The Astrophysics Lab

Sam's Official Piano Recital

2010-05-23T22:23:00.006-05:00

Today was the actual piano recital. Three days ago was the rehearsal one. Two songs.

First: America/My Country 'Tis of Thee

Second: Auld Lang Syne

Sam's Piano Recital 2010

2010-05-21T20:08:00.003-05:00

Sorry the camera is shaky, I was holding it without a tripod. This is his trial recital, with the "real" one coming in a few days. But, still, fun stuff. :-)

Video try #2, this one is uploaded directly from my computer, not copied over from Facebook.

Alexander broke his arm

2009-10-21T20:35:00.003-05:00

Just wanted to let everyone know that Alexander broke his arm today. He fractured his radius bone in his left forearm. Not a full break, but not a hairline fracture either, a real one that we were able to see on the x-rays. In one angle, there was a visible dark line all the way across the bone, and on another angle, you could see that the bone had been compressed and misplaced, like crushing a coke can by squeezing the top and bottom together. It looked like land after an earthquake, when a fence has been moved over a few feet.

Anyway, he's fine, very fine. He was playing at a friend's house and did some funny twist-fall and fell off a swing. The mom and I and Alexander talked on the phone a lot, and keep in good monitoring of the situation. The mom they were with was so wonderful in taking care of him for me! I decided to just let him rest for a while and see if it still hurt later. Usually my kids are perfectly fine after 30 minutes of resting, so I wanted to see if that was the case this time. So, they watched a movie and put ice on it. Later, when I went to pick him up, it still hurt. He said it stinged. He never cried or anything, so it was hard to tell how much he was hurt. He's very stoic, my friend said. It's true. There was one direction he couldn't turn his wrist at all. He was up, and playing with his friends, and moving around, but he wasn't using that arm at all. Those things, plus the fact that he was still in sharp pain led me to take him to the Urgent Care Center to get it checked out.

Right now he's fine, he's just resting. He's just on Jr. Tylenol, so it's really not the worst pain in the world. He's good unless he tries to move it. He's fine and just getting used to doing things one-handed. Thank goodness his right hand is okay, his school teacher doesn't want to have to write out all of his homework for the next month! hehe :-)

Right now, he has a half cast on, held on with ace bandages. They call it a splint. He'll wear that for a few days. He also has a sling. The immobilizing with the splint and sling has helped a great deal, since it was the bumping and moving that caused him pain.

Tomorrow, another doctor is going to look at his x-rays. She'll determine if it's something she can cast herself, or if he needs to go to a specialist. Either way, he'll be getting a full cast in a few days, probably on Monday. They don't know yet if it will be just below the elbow, or above the elbow. The cast will probably be on for 3-4 weeks.

That's it for now, just wanted to keep everyone informed. A few pictures are attached, and a few more are on Facebook. If you want to contact Alex, you can use email, Skype, or call my phone.

He's still going to go to everything, all of his normal events, but he may not be running around quite as much.

Fun Quotes & Lessons Learned

2009-10-09T23:10:00.004-05:00

Sidney: Is it true that God answers all prayers?
Cpt. Chandler: Yes, but sometimes the answer is no.

-- from M*A*S*H. My dad used to always tell me the story of this quote, and now I'm so glad he did because it perfectly describes my life, and gives me lots of comfort. :-)

Just when the caterpillar thought

her world was over,
She became a butterfly

-- I just read this on someone's blog. I don't know where they got it from.

As God is my witness, I thought turkeys could fly!

-- from WKRP, another show my dad used to watch, and a funny quote that I was remembering earlier this week for no apparent reason, other than it was funny.

I just had a really bad week just now, and somehow everything I was sad or mad or upset about from the past 1.5 years just welled up inside of me. I felt a lot of anger for a day or two there. I think it was good for me to let myself fully feel all of it, I really needed that.

But -- I needed to stop it before it went on too long.

Fortunately, I started reading conference talks from last week's conference, and found one from the Prophet during the men's session that applied to me. It was about not being angry. http://lds.org/conference/talk/display/0,5232,23-1-1117-21,00.html Well, it was exactly what I needed! I guess the spirit can speak to us through conference talks, because I somehow learned more lessons than were taught in that talk. :-) That, combined with the loving friendship of my friends and some inspiration from my ultra-romantic husband, who is teaching me to focus on the important things in life, like love, and not focus on stuff that doesn't matter as much, like disabilities or hassles in life.

I watched "50 First Dates" today. We had recorded it when it was on tv earlier this week. I love that show because it's so funny, and has great people in it (not to mention the scenery!). But this time the movie really spoke to me. I was crying the whole second half of the movie pretty much -- in a good way. It was a love movie, just like Brian likes. But more than that, the woman had a physical problem that no one wanted her to have, but everyone had to deal with. Adam Sandler didn't want her to have the problem, but he loved her anyway, and just had to work around it in order to get to love her. And what he did for her changed her life, and allowed her to live her life, which she might not have been able to to do if he hadn't come along. Most importantly, at the end of the movie, everything is great, and they are living a wonderful life -- EVEN THOUGH she still had the exactly same physical problem she had at the beginning. It was wonderful. It showed me that you don't let the thing stop you, that it can still be there, and you can still life a great life. That's life. I loved it.

And just like that movie, my husband loves me a lot, and doesn't care at all that I don't stand up anymore. I mean, he cares, but only that he also wishes it wasn't so, but it doesn't affect his love for me. How fortunate am I?! So, I need to take his lead and just be happy like he shows me to be, and not worry about everything.

Follow my lead, oh, how I need
Someone to watch over me

-- from "someone to watch over me", which as far as I'm concerned came from Mr. Holland's Opus, even though I hear that it was a song before that. and that show, by the way, reminds me of John Holt. :-)

I wanted to report back that I'm feeling much better today! It's appears to be over. I love rain, and it rained a lot today! :-) And I got to get caught up on laundry, and school work with the boys, and other things I needed to do, and I took a nap which I desperately needed. So, I feel much better, and somehow, the weight of the world has literally been removed from my shoulders. I feel much better. :-)

I really need to find a hobby, something that I like to do, for me, to replace hiking and other stuff I used to do in my prior life. I'll have to keep you updated on that search.

Response

2009-10-09T13:42:00.006-05:00

FROM TARA, ON FACEBOOK:

Tara Ford

I can understand where you are coming from. I had a dear friend that was diagnosed with breast cancer when she was in her mid-twenties. I probably prayed harder for her than anything I ever had for myself. She passed away about a year and half after her diagnosis.

A few weeks after she passed, a man gave his testimony in church on a fast Sunday. He had a family member that was diagnosed with cancer and was healed. His testimony was about how "prayer works" and can heal people.

It made me so mad!! The pain of my friend's loss was still fresh, so hearing about something positive for another person just felt like salt in the wound.

I know that sometimes we just need to vent to feel better--not sure if that's all you needed when writing this note. But if you do need some positive words I want to let you know that you are an amazing person. Maybe you can't do some of the activities that you enjoyed before, but I think perhaps you are finding new perspective and joys. One of those things is your photography. I don't know if you did much before, but I've enjoyed seeing your nature pictures and all the pictures of your family. I think that is something that everyone is going to treasure down the road. And perhaps you take those activities that you love and reinvent how you do them. Have you done much container gardening?

Don't want to turn this into a sermon, so will stop there. But if you feel like you need to vent more or need some words of encouragement I'm around.

MY RESPONSE:

Yes, I just needed to vent. I was having an angry day yesterday. That's really rare for me, but I decided to go into it deep yesterday, to finally feel all of the anger I had been building up for so long. I'm feeling better today. I totally know what you mean about your friend. Some people are telling me that I'm choosing to be disabled because I don't have enough faith. But that's just not how it works sometimes. They're like "what did God say when you got a blessing?" And I answer "he said get used to it, this is your life now." Then it's like they don't believe me.

People ask why I don't pray to get healed anymore. I did. I tried a lot. But God said no. So, I eventually moved on to pray for things he said I could get, like a basic diagnosis. Now I'm praying that my new medicine might give me relief from the lifelong hormonal problems I've had. So, I'm praying for things that God's said maybe I can have. There's no point in praying for something for over a year when he says No every time.

But it is hard. When I first stopped being able to walk, in our ward we also had two other people that were potentially dying. So, needless to say that got all the attention. One lady died of cancer a few months later. Tragic, so unfair, you know? The other kid got lots of medical treatment and after a very long year is now fully healthy again. Then there's me, who will have several decades worth of life changing as a result of how my year went. Life definitely isn't fair. Yes, prayer helps some families, when God approves it, but sometimes he doesn't approve it. But it doesn't mean they weren't praying enough. It just means God said no.

Thank you so much for your kind words, Tara. They really helped. Yes, I'm desperately in need of a hobby to replace hiking. I loved walking on rocks. I did container gardening a bit last Spring, but there are too many problems with it since it is so hard to get to my tiny back porch, and then I'm trapped on the tiny back porch, not enough room for the bag of dirt, and I can't get to the grass. And in the kitchen, all of the counters are so high that I can't use them for potting, because my arms tire really quickly when I have to raise them over my head. So, I hope to container garden a lot more once we move, in a few years. Or maybe now, if I can find a way. I'd like that. The photography I've always done, but not seriously. But I feel it has really suffered because I can't climb over rocks like I used to do to get the good shots. I guess I don't want to feel like I'm giving into a gimp hobby. But any hobby is better than none.

See, I'm just complaining again. I'm sorry. I'll work on it. Eventually I'll find something I like to do. Brian says I need to think outside the box, and think of things I've never thought of before, instead of just wishing I could do what I used to do. So, he's wise, as always. :-)

Brian's also really inspiring me lately with his romantic movies. He loves, not so much chick flicks, but movies about love. His favorite right now is Enchanted. He loves singing love songs too. He's a complete romantic. But I'm learning from him, learning that love can be more important than the crap in our lives. And that maybe if I focus on the love, and remember that it's more important, maybe I'll worry less about the crap.

Just a theory, but a good one. :-)

2009-10-09T01:28:00.002-05:00

I just read this from last week's conference. I have heard stories like this forever. What's my change? How will I improve my life now that I'm broken? I don't see it. How does everyone else get a problem, then see something they needed to fix, and then they feel better? I get a problem, and just have to stop doing things, like hiking, gardening, cleaning my house, being active. I just stop more and more. What have I gained?

Recently I observed such a mighty change in a man whom I first met about 10 years ago. He had come to a stake conference at which his son was sustained as a member of the new stake presidency. This father was not a member of the Church. After his son had been set apart, I put my arms around this father and praised him for having such a wonderful son. Then I boldly declared: “The day will come when you will want to have this son sealed to you and your wife in a holy temple. And when that day comes, I would be honored to perform that sealing for you.”

During the subsequent decade, I did not see this man. Six weeks ago he and his wife came to my office. He greeted me warmly and recounted how startled he was with my earlier invitation. He didn’t do much about it until later, when his hearing began to fail. Then he awakened to the realization that his body was changing and that his time on earth was indeed limited. In due course he ultimately lost his hearing. At the same time, he became converted and joined the Church.

During our visit he summarized his total transformation: “I had to lose my hearing before I could heed the great importance of your message. Then I realized how much I wanted my loved ones to be sealed to me. I am now worthy and prepared. Will you please perform that sealing?”⁷ This I did with a deep sense of gratitude to God.

September

2009-10-04T18:57:00.015-05:00

Above: Just a pretty sunset picture I took last month.

Hey everyone. Just catching up here. Here are a few pictures below of things we've done lately. See flikr and facebook for many more pictures. They are harder to upload here, so I don't upload as many on blogger. We've been good here. No flu, thank goodness. But Brian and I seem to have had one, or many, small colds, for about 3 weeks now, and they don't appear to be going away any time soon. So, who knows what's going on with that.

I'm sticking with the belief that spinal cord nerves, like arms and legs and eyeballs, can't be regrown just by wanting it to be so, and meditating on it. That is causing me some friction with people. So, that's too bad. If I inform someone that something is permanent, it's not because I'm saying I want it to be permanent, but because it is permanent. Lots of things are permanent, and lots of things happen that we didn't really want to happen. Accepting that fact is different than wanting that fact to be true. Very different. It just is real. That's reality.

I've rediscovered the band Rush, which I used to love in High School. I finally got around to hearing their 2007 record, which I only barely listened to when it came out. MalNar is great! I'm loving remembering all of the songs I used to hike to, and went to concerts to hear, and I love the new ones, and how they generate the feeling of motion. I always feel like they are driving or hiking songs, and I love that feeling. It makes sense, really, since the author of the lyrics, the drummer, also loves travel and writes of it often in the songs.

Our oven appears to be broken, so we're going to have to replace that. We've been living without it just fine, and just using the toaster oven, but we have a goal to replace it in time to cook Thanksgiving dinner. Also, we are shopping around for homebuilders. Soon, we're going to check out Tilson, a custom homebuilder in town. They tell us they can make all the modifications we need, like wider doorways, lowered counters, and accessible things I need. We're not in a hurry, but someday we do need to start building ourselves a one-story house. So, talking with them will be a nice first step.

I need to find a way to satisfy my hiking desires. I've tried handbikes again, and confirmed that I really don't have the arm strength for them, which means I'm out of options for self-powered vehicles to replace hiking, as I had hoped. So, I'm looking to motorized things. Maybe 4-wheelers or something would be fun. For now, I already have that electric scooter, so I think I should use it more often to get out there, go over the rocks, and get some speed. I spent most of yesterday outside in the rain with my kids, running and scootering around the neighborhood. It was great!

Here are the boys in front of part of a huge pumpkin display.

Alex on the climbing rock at the RISE Adventures End of Summer Bash. No, that's not me you see there, that's another mom. I'm taking the picture.

Alexander and Brian climbing together.

Sam reached the very top of the structure.

The event took place by a beautiful lake in Dallas.

Nothing much here.

2009-08-26T21:07:00.007-05:00

Hey everyone. Nothing much happening here. I just thought I'd enter a new blog entry to announce a boring, wonderful, nothing new life. I love it!

We had lots of friends over today, for the kids to play with, and for the moms to talk -- always fun!! So glad we did that.

Went to my other doctor yesterday, and we're going to try new types of medicine for a whole other thing I have. It should be a nice improvement.

I'm so done with diagnosing and doctors and stuff, it was so nice, very refreshing, to go to a different doctor for a whole different reason. I love it, because it symbolizes where I am in my life, which is a place in which I couldn't care less about the wheelchair. It's just so not a big deal anymore. I can't even seem to answer anyone's questions about it anymore -- sorry for those of you whose questions I haven't been able to answer, you're not alone -- I just can't think on it anymore. I'm just done, and I've moved on. For me, it's a wonderful thing! I'm very happy. Just like with the doctor yesterday, I've been trying to figure that other problem out for decades, and yesterday I was just like "sure, I'll take whatever you think, I have no opinion or preferences on the matter. I've done no research, and I'm totally happy to just go with whatever you think." :-) Brian is totally there too. We are happy to just play video games, visit our friends, cook dinner, go places, and live our little lives now. :-)

You can tell I'm resting tonight after the playing today -- I just joined Twitter finally. It seemed like the thing to do. :-) I probably won't be tweeting, but just reading updates. If anyone is on Twitter that I should be following, please let me know!

I love Warehouse 13, a new show on SyFy (cable). I really love it, lots of fun! I'm so glad there's a new show out there that I love. That's a rare and precious thing! Artie is my favorite, love Claudia too. And the Studio 54 disco ball thing was hilarious!!

Homeschooling is going well. We're in our 4th week and everything's going great! This is the most organized we've been in school ever, by far, and it's really paying off. It's a great benefit to go into the school room every day and already know what is set out to do that day. I love the history books we're using. The science books are a bit boring, though-- don't be surprised if I switch to something better before the semester's out.

P.E. starts up again for the kids next week! Woohoo!!! Truly the worst part of summer is no PE. The kids love it! It'll be so much nicer when it starts up again, and they can see their friends one extra day of the week (though they already see them plenty now), and get the outdoor exercise they so need to be balanced and calm kids. Can't wait!

If any homeschoolers in town want to join PE, let me know and I'll email you their webpage. You can attend the first day for free, to try it out.

That's it for tonight. Have a great week! :-)

A Song Dedicated to Me

2009-08-17T11:42:00.012-05:00

I couldn't believe it, but a real musician has dedicated a song to me! He wrote it just a few weeks ago, hasn't even posted it to his MySpace page yet. Then he found me via this blog a few days ago, and realized that the song and I are a match, so he dedicated it to me. Both he and his lady have both told me that the song seemed as if it was meant to find me. :-)

You can read the lyrics and listen to the song with this link......

http://www.songramp.com/mod/mps/viewtrack.php?trackid=73875

Above the lyrics, in the green box, click by where it says "play".

His name is Terry Alan Wade. Here is his site, where you can read about him and hear his other songs:

http://www.myspace.com/terryalanwade

Facebook: http://www.facebook.com/home.php#/terryalanwade

It's a great, slow, kind, country song. Very nice! He's still trying to get it published, or get signed to a label, so if anyone out there is looking to sign someone, look this guy up.

He and I have emailed back and forth this weekend. Here's part of what he wrote me:

"Would like to dedicate the song to you, and kind of make it your song in a sense. Who knows, maybe something good can come out of people hearing it. If it makes them aware of the condition you have and others learn from it I think it will be a good thing. If nothing else, maybe people will realize that folks who have difficulties: have, want and need all the same things everyone else does, they just have a heavier load to carry as they pursue them."

Isn't that sweet? He's a great guy, very thoughtful. And I like that the song isn't about lots of sympathy or pity, but is saying that she's a regular person, just with a heavier load. I am truly honored to be asked to be the person that this song describes. It really means a lot to me. It's so wonderful!

Follow Up Dr. Appointment

2009-08-10T11:34:00.003-05:00

I went in for my last doctor's appointment this morning. This time Brian and the kids came with me. I knew it would be a short, simple meeting, so it was a nice time for Brian to meet my doctor. Also, Brian was a huge help in pushing me up the steep downtown streets.

I forget my doctor's exact words, but he said something like "well, we've beaten you to death, there's nothing left to do with you." :-) He said that while smiling. He went on to say "we've tested you for everything that could possibly have any treatments. So, it's got to be the Hereditary thing" (that's what he calls HSP sometimes, for short). "But HSP is a mysterious disease, and we don't know anything about it, so that's all we can do."

We finally figured out today why my doctor spent so much time testing for Stiff Man Syndrome. It's because he actually had a patient with it a few years ago. He had seen it, so he knew it was a real possibility. Now he's had a patient with HSP, so now he's seen that too.

He checked my reflexes again, like he always does, and says that my legs and feet are still hyper-reflexive, which is typical for what I have. He also tested some range of motion and was happy that I still have a good range of motion in my legs. He wants me to keep doing all of my stretching that I'm doing, he says it's working well to keep me healthy. :-)

Brian liked the doctor too. We both like how straight forward he is in his speaking. We're very glad to have him as our doctor because we know that most neurologists wouldn't have the background and knowledge needed to diagnose me with my rare condition. This may have taken a really long time, but it did work out in the end.

The doctor gave me a longer-term prescription for the spasms, and says I have to go back every six months to continue it. No problem.

So, it's done. Afterwards, Brian went to work, and the kids and I made our monthly run across town to the Boy Scout office for this month's Cub Scouting awards.

Frequently Asked Questions

2009-08-02T21:27:00.003-05:00

Frequently Asked Questions

Hi there. Today, I thought I’d answer some commonly asked questions that people have had for me recently regarding my diagnosis of Hereditary Spastic Paraplegia. I hope this will answer those questions for everyone else as well. :-)

They are listed in the following posts, for easy reference. See the ARCHIVE list on your right.

If you have more questions, feel free to add them to the list. Enjoy! :-)

Q: How genetic are we talking? If I’m related to Brooke, do I need to worry about my kids or grandkids getting HSP? Or, did I give it to her?

2009-08-02T21:26:00.002-05:00

Q: How genetic are we talking? If I’m related to Brooke, do I need to worry about my kids or grandkids getting HSP? Or, did I give it to her?

A: There are few different ways of genetically transmitting the disease, but from what I have seen, both in my research and the people I’ve met, it’s either really prevalent in a family, or practically unheard of. Everyone I’ve heard of and everyone I’ve met with HSP is either like me, where they’re the only ones in their family that the know of with it, or they are the other type, and their mother, 2 sisters, cousin, son, daughter, and 2 of their dogs also have HSP. (I actually know 2 families for which I didn’t really exaggerate much there.)

Since there is no one in our family who has had this disease prior to me, that I know of, my research shows and my honest belief is that it’s really rare in our family. It will probably be many, many generations until this shows up again, if then. This section from an HSP website describes it better than I can…….

How can it be HSP when no one else in the family has it?

“There are many explanations for why individuals who have all the signs and symptoms of HSP do not appear to have a family history of the disorder. The most common reason is that the condition may be recessive or X-linked. These forms may have passed down silently for generations until the correct circumstances existed for someone to have the disorder.

“Even someone with a dominant form of HSP may not appear to have a family history of the disorder. Since HSP can vary greatly in severity of symptoms and age of onset, a parent may have had a very mild case. His or her symptoms may have gone unnoticed or been attributed to other problems such as old age or arthritis. In addition, since symptoms can develop later in life, the person may have died before showing symptoms, or if still living, may not have developed them yet. Finally, it could be a new gene mutation, making the affected person the first in his family. “

Q: Does it hurt?

2009-08-02T21:26:00.001-05:00

Q: Does it hurt?

A: Yes and no. Usually, no. There’s no nerve pain, so that’s great. My muscles do get really tense on their own, though. I treat this with prescription gabapentin, which is my muscle anti-spasm medication, and with a daily stretching routine. I won’t lie to you, the stretching hurts!

However, if I didn’t stretch, and take the medication, my leg muscles tighten on their own, a lot. Such that if I’m just sitting and minding my own business, I can get sprains on every part and joint of my body from the waist down. The muscles pull so much that my knees and ankles get sprained, they hurt, they get swollen and red, just like a normal sports injury. The same thing happens in my hips, only stronger. These things are very painful!

I put a lot of time every day into stretching, icing my muscles when needed, and other things I do to keep my body flexible and pain free. Also, my shoulders get sore from pushing too hard,
but that’s to be expected. So, most of the time I am pain free.

Q: Are they doing research to cure HSP? How’s that going? What about stem cells?

2009-08-02T21:25:00.007-05:00

Q: Are they doing research to cure HSP? How’s that going? What about stem cells?

A: Yes, research is being done. The problem is, and the thing to understand, is that this is a very rare disease. It is listed on the official list of Rare Diseases with the National Institute of Health. It’s really rare. Therefore, there is only a relatively tiny amount of research currently being put into HSP and its cures. Right now, they haven’t even fully identified what’s going wrong in most types of HSP, nor do we even have a diagnostic test to identify easily when someone has HSP. I would imagine that finding those things will necessarily precede finding treatments and cures.

Research is ongoing, however. Currently, you can see more information on current research into HSP here: http://www.sp-foundation.org/research.htm.

Q: How does Brooke feel about research and cures?

2009-08-02T21:25:00.006-05:00

Q: How does Brooke feel about research and cures?

A: Personally, I’m happy to hear that someone is working on this. But to be honest with you, I don’t expect anything they find to be of use to me in my lifetime. I would expect to see people with spinal cord injuries walking before I am. This is because their injury is far more common, and more people are donating to that cause and more research is being done in their area of disability. More common diseases tend to get more energy put into them, which makes sense.

I’ve seen people who spend their lives waiting for a cure. I am not judging that lifestyle choice, but it is not for me. If there is a cure for me someday, that’s great, I’ll take it. But in the meantime, I won’t be following the latest research, or get excited every time some stem cell research shows something.

No one is yet walking from stem cells, or any other nerve repairing cures, that I know of. It’s just not part of my reality. I worked hard to get used to this life, and I don’t want to miss out on my life or my happiness because I’m waiting for something.

I also don’t like following research and cures because I guess I don’t like the idea that my life is not perfect already like it is. I am very happy, I love my life. Until there is actually a cure, I guess I don't like being reminded that something is wrong with me.

Q: Do you have any plans to move to a one-story house?

2009-08-02T21:25:00.001-05:00

Q: Do you have any plans to move to a one-story house, or will you be staying in your current two-story house?

A: Oh yes! We decided in June of 2008 that we will someday move to a one-story house. It’s just a bad time right now with the economy. Houses are hard to buy and hard to sell right now, and our current one has a great mortgage on it. Currently, I have a stair lift, so I can definitely live in this house a few more years. Eventually, we will get a new house. We will probably one we build from the ground up in order to make it completely wheelchair friendly. We will need all wider doorways, tiled floors, maybe lowered sinks and surfaces in the kitchen, and ramps to the outside. I’m sure there are lots of other options too that will make my life easier. I will research those things when the time is a little closer. I know I want access to the food pantry, that will be nice!

Q: How do you get around your house now? Do you drive?

2009-08-02T21:24:00.003-05:00

Q: How do you get around your house now? Do you drive?

A: Yes, I drive. I have hand controls. See my photo journal on those topics at flikr.com: “A Day in the Life” http://www.flickr.com/photos/blueginger125/sets/72157620142799018/

Q: If I’m sad about Brooke’s diagnosis, do I have to go through the stages of grief too?

2009-08-02T21:24:00.001-05:00

Q: If I’m sad about Brooke’s diagnosis, do I have to go through the stages of grief too, or is she the only one?

A: Usually the person who has been affected is only one of the people who will need to grieve and adjust to a new life. Everyone has different depths of relationship to me, and everyone grieves in their own way. But, on average, anyone close to me, who’s known me for a long time, and/or who is related to me will need to go through their own grieving process in their own time. The general process is the same for any loss or major sadness in life. There are 5-7 steps in the process, depending on who you ask. This is a good site that lists the general stages and what they mean. http://www.recover-from-grief.com/7-stages-of-grief.html. I have been told that these steps are not necessarily linear, as people can move back and forth between them, or go through them in a different order altogether. For example, I had a long time where I was mostly in stage 4, and would occasionally visit stages 3 and 5. Some people can stay at stage 1 for a very long time before they move on. Any variation is possible.

1. Shock & Denial. 2. Pain & Guilt. 3. Anger & Bargaining. 4. “Depression”, Reflection, & Loneliness 5. The Upward Turn 6. Reconstruction & Working Through 7. Acceptance & Hope

I went through these stages in the past year or so. I’m happy to inform you that I believe I have completed these stages, for I am very happy and well adjusted now. Last year was a very dark year for me, though, so I have learned a lot about how real these stages are and how much they can affect a life. A person can not force their way through the levels, they must happen in their own time. A faked “recovery” will only relapse. Take any time needed, usually years, and fully go through whatever you have to go through.

Q: Will it get worse?

2009-08-02T21:23:00.002-05:00

Q: Will it get worse?

A: Yes. HSP is a degenerative disease. I have had it all my life. I can recognize very mild symptoms of it as far back as when I was six years old. Every decade it got worse. It has been getting worse my whole life. In the past 3 years, the pace has greatly quickened, and I’ve gotten much worse, much more quickly. This is common with my disease around my age.

The hope is that the pace will slow down again, and my degeneration will be very slow now throughout the rest of my life. There will be a point sometime in the future when I will not even be able to stand for a few seconds like I can now. There will come a time when I will need to use a power wheelchair part of the time because my torso will become more and more affected. So, it will get worse, but it will happen very slowly, and I will adjust to it, like I’ve been doing all of my life.

Q: Will your arms be affected?

2009-08-02T21:23:00.001-05:00

Q: Will your arms be affected?

A: Some versions of HSP leave the arms and hands completely unaffected, and some affect them as much as the legs. My version appears to closer to the torso and legs version. My arms are already slightly affected. Neither of them can do what they used to do. My right arm is much weaker than my left arm. I can do daily tasks, but, for example, I can’t lift my right arm up in the air for more than a few seconds, and even though I’m right-handed, I usually prefer my left arm to do things because there is so much less effort required to move it.

The hope and the theory is that my arms and hands will not get any worse, that they will stay the same as they are now. Arms are rarely fully affected in this disease. The minor impedances to my arms and hands have not gotten worse in the past few months like my lower body has. Evidence now shows that in the future I will only get worse from the chest down. I can live with that.

Q: Can you improve with therapy and muscle training?

2009-08-02T21:22:00.000-05:00

Q: Can you improve with therapy and muscle training?

A: No. I do benefit from daily stretching, which is important is keeping me flexible since I have muscles that want to become incredibly tight and stiff. This also helps eliminate pain due to stiff muscles. However, the damage is in my nerves in my brain and brainstem. My muscles have been tested several times, and they are perfectly healthy. My muscles are also very large and strong already, due to the hypertonia (http://en.wikipedia.org/wiki/Hypertonia) I have from all the muscle spasms. Therapy and muscle training only work to improve muscle tone (which I have plenty of), they can not improve the ability of an electrical signal getting from my brain to those muscles. Because my problem is in my nerves and not my muscles, there is nothing that can be done to fix the neurological error.

Q: Are you okay, Brooke?

2009-08-02T21:21:00.001-05:00

Q: Are you okay, Brooke?

A: Ya, I am. I realize it’s probably a little odd to say that. I always wanted to just be happy and get on with my life, but at first I was just really sad and had a lot of adjusting to do. I looked forward to the time when I was diagnosed, fully adapted physically (strong arms, adapted house) and emotionally (used to it and okay with it). When I got close, I still had one part of my brain which always said to me: “how can you be happy like that?” But a few months ago, I realized that it was Satan whispering to me, and not an actual legitimate concern. So, I told him to go away. I also took my time, and went through all of the stages of grief, and wallowed for as long as was necessary. It was a sad time, but I had to go through it, and it’s over now. And you know what? I’m great! My life is indeed much better than it used to be.

I think it helps that this was a slow-onset degeneration, because the transition from barely walking to wheelchair was less of a change than going from perfectly healthy to completely paralyzed. My change wasn’t that big, and I really think that helped me. Also, I’ve had like 5 or 6 other major long term illnesses and health problems in my life, though none of them are visible. From these many health problems, I’ve grown used to “things are just different for me than they are for most people.” I’ve had many decades to get used to that, and I’m good. I have come to understand and to know that my body can have little nicks and scratches and imperfections and I can still be a wonderful me and still have a happy and completely fulfilling life! This is the first visible health condition I’ve had, but to me, it wasn’t that much more than some other things I’ve gone through. It was just a little more, like each contraction in childbirth is just a little stronger than the prior one. And if I can handle the last one, I can handle the next one.

Also, many things in my life are better than they used to be, and I want to keep those better things. For one, being disabled means I’m not always in complete exhaustion from the days when I could walk but it completely wore me out. I used to think that if I could walk, I should. But this thinking made me have to rest and nap every day, not go anywhere, be in pain all the time, and not be the best parent in teaching and feeding my children. As long as I had the ability to walk, no matter how hard it was, I pushed myself way too hard in order to do it. My heart rate then was always high, as if I was exercising. I had a metabolism test during that time at my endocrinologist, and it said my metabolism was as high as the test would go, and indicated that I should eat over 3,500 calories per day! Of course I don’t eat that much, but that’s how much energy I was expending in those days.

When I got to the point where I could no longer walk across a room, and began using a wheelchair, it was actually a relief in many ways. It’s been an adjustment this past year, as my walking ability went from across the room, to just standing for a few seconds. But also during that time, my arms have grown stronger, and I have learned how to fully use a wheelchair. My energy is no longer wasted trying to move heavy legs, and I have energy to play with my kids, to teach them, and to buy and prepare food for them. I am not in pain from overexertion anymore, and I am free to have energy to pursue hobbies and fun for the first time in several years.

There may be things I can’t do anymore, but my life is truly better. My husband and children and I get to spend more quality time together as they help me do things that I could do but are difficult, such as unloading groceries from the car. I expect less of myself now. I’ve always pushed myself really hard, so even this gift from myself is a great relief. I have a great appreciation of my family, and of the things my body can do well. I have to spend a lot of time each day taking care of my body now, but it's teaching me to love myself more.

So yes, everything is just fine. :-) No need to worry about me. :-)

Hereditary Spastic Paraplegia

2009-07-30T17:14:00.011-05:00

Done at last! Done at last! Thank God Almighty! It is done at last!!!
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Looks like my post below, from this morning, worked like washing your car before it rains! I posted that he'll never call with the test results, and he calls! Yay!
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The blood tests for the last two things he was checking for did, in fact, come back negative today. That was the last of the tests. My doctor told me just now that I am now diagnosed with Hereditary Spastic Paraplegia (HSP).
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I know it's odd to be celebrating receiving a diagnosis of a degenerative uncurable cripping disease, but I've already had really serious symptoms of the degenerative uncurable cripping disease for a year and a half. I've already adapted to the knowledge that I have such a disease, so it's a celebratory thing now to actually have a name for it! Yay!
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I'd like to thank the Academy, I'd like to thank God, and I'd like to thank my friends and family all over the country and world who have been there for me, and have prayed that I would someday get diagnosed. Thank you!!
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It's so nice to know what I have. I was pretty darn sure that these last blood tests would be negative, so I joined some national HSP clubs and email lists like a month ago, and have met lots of other people online who have this disease too. It's nice to have a disease with a home. I just can't go on anymore telling people that I don't know why I can't walk. It's a pretty big thing, and to not know why, was also pretty big. I thank God that that part of my life is over. :-)
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Hereditary Spastic Paraplegia isn't really one disease, it's a category of similar diseases. We'll never know which version I have. There are many, and there’s no way to test for them all with current medical technology. So, one person with HSP can have symptoms a little different from another, because of the variety of the types of HSP.
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The condition is genetic, which means it’s simply in my DNA. There was nothing anyone did that could have or did cause it. I was just born to be a paraplegic. Isn’t that a weird thing? I never used to know that could happen to a person.
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If you want to research it more, this is a good page of information:http://www.sp-foundation.org/hsp.htm.

There is also a brief description here: http://www.ninds.nih.gov/disorders/hereditary_spastic_paraplegia/hereditary_spastic_paraplegia.htm

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The thing that is going wrong, in technical terms, is: "axonal degeneration in the corticospinal tract". This is permanent nerve breakdown in the portion of the brain and brainstem (and spine in some people) that control voluntary movement. Everyone has genes which make the proteins needed to keep nerves and axons between the nerves functioning. My genes were programmed to stop providing some of those proteins as I age. Therefore, some of the nerve signals to move can’t get through.
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There is no treatment or cure for HSP. All I can do is take anti-spasm medication, which I'm already on, and get mobility equipment, which I took care of a long time ago. That's it. Just get used to it and get on with life.
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I got worse three times last year, which was fast. That’s why I went from walking to wheeling in less than six months. Then it was stable for a long time. Over the month of July just now, I've gotten worse again. This will keep happening the rest of my life, though it used to happen more slowly (less often) when I was younger, and will probably slow down again in the future. Apparently it’s normal for the disease to really manifest itself when people are in their 20’s, 30’s, or 40’s. I’m 35, now, and it’s been really affecting my life for about 7 years now, so I’d say that’s right on.
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Now, my torso is as effected as my legs are. I can't sit up without support for more than a few seconds anymore. I used to be equivalent to like a T10 paraplegic, but now I’m like a T1 paraplegic. Incomplete, of course. I can still feel everything, and there’s plenty of moving I can still do. I even take a few steps every morning. I've ordered some taller back posts for my chair, and we've adjusted how my wheelchair gets into my car, and I use my scooter more around the house now. Basically, I've adapted again. :-)
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Nothing Yet

2009-07-30T14:01:00.004-05:00

Well, I don't know what's going on with the doctor now.

The blood test should have taken 1-2 weeks. Today marks 3 weeks since I gave the blood for it.

Monday I called my doctor, and he said he checked Friday and that day, Monday, for results, but they were not there yet. He promised he would call me back Tuesday or Wednesday and let me know if he had received results yet.

By Wednesday afternoon, he had still not called. I called the lab that my bloodwork was sent to. They weren't able to tell me the results, but they were able to tell me that they faxed the results to my doctor on Monday, two days prior.

Then I called my doctor again, to make sure he knew that I knew he'd had the results for 2 days now. He got mad, said he was very busy, and that the lab where he picks up results already closed at 12:30 that day, so he'd get them tomorrow. He promised to call me Thursday with results.

Now, it's afternoon on Thursday. 3 weeks after blood was given. Over 3 days since the results were faxed to my doctor, and the third day that my doctor has "promised" to call me.

I kept not posting here to my blog because I figured that at any moment in the last 1.5 weeks I would have that damn test result. But alas, I do not. So, I thought I'd just update you anyway.

It has been almost a year since I first went to a doctor to try to get diagnosed. It was too much for me after a while, I was at my doctor limit, like I am now, so I took a break. Not including that break in between doctors, I've been seeing doctors and getting tests and waiting for results for 179 days so far. That's 6 months! I've been a chair user for 14.5 months, so I'm already used to it and fully adapted, and I just want to get this darn diagnostic stage over with. Homeschool is starting up, I need to get on with my life. 6 months and still waiting! Could you imagine how it would be on nationalized medicine??!! I'd probably literally never get diagnosed.

I really want to get this over with. I have no more energy for this, it must end soon. Please hope with me that it ends really soon! Like that he calls me back this week!! It's not too much to ask, I don't think.

Thank you!! :-)

Photos on Flikr

2009-07-19T21:42:00.007-05:00

Hi there. Time to update the world with photos! :-)

I started a Flikr account about a month ago and have been slowly filling it with photos. Not family photos, those are here. Mostly pretty photos, nice clouds, sunsets, and other scenes. This weekend I also did a Day in the Life serious, and took and posted pictures of all the equipment and tools that I use to get around my house, and to do things around my house and in my car.

http://www.flickr.com/photos/blueginger125/sets/

I thought it would be a nice informational piece, since I have so many dear family members that are so far away, and don't get to see my daily life, I wanted to share it with them. Now you can see all of my fun toys, and how they get me around everywhere! :-)

Below is a video I made to show you the new school room. Pictures just weren't showing the 4 walls very well, I thought, so here's a video. :-)

Fireworks

2009-07-19T00:00:00.003-05:00

Here's a great video. You can't see him, but it's Sam with a sparkler in each hand, while spinning in circles! We had a fun 4th of July! :-)

Doctor Phone Call -- Good Progress

2009-07-02T17:13:00.021-05:00

My doctor just called me. He found the amphysin blood test he was looking for, and how to get it processed, so he wants to send me for that. We talked about what else it could be, and what comes next. I pushed him to think of things other than Stiff Man Syndrome, this last test, because it's really looking like I don't have it, since the first and most common blood test for it was negative, and I want to know what we do next. So I asked him what else we're going to do.

We talked about Hereditary Spastic Paraplegia (HSP), and how those symptoms really match me better than anything else there is. It's a mostly untestable disease, so he wants to eliminate everything else. He does think I have HSP, though, especially because I have two major markers for it: 1) two people in my immediate family (sister & brother) have scoliosis, and 2) I have incredibly highly arched feet. Scoliosis genetically runs in the same families as HSP. And my podiatrist a few years ago said I had the most highly arched feet he had ever seen (and he looks at feet all day, every day!!!). Highly arched feet is a sign of HSP. So, those things, combined with the fact that my symptoms match it exactly, really got my doctor excited about HSP just now, and he said it is a very possible diagnosis.

His only hesitation before he declares that I have HSP is that we eliminate the one remaining blood test for Stiff Man Syndrome. Diagnosing HSP is all about eliminating everything else. And we've done that! Muscles, MRI for brain and full spine, all Autoimmune Tests, Peripheral Nerve tests, everything!! So, he's going to mail me the lab paperwork, and next week I'll go to the hospital to give blood for that last test. Approximately two weeks after that, he should have the results, and then we'll know.

Just to tell you why I'm so sure that test for Stiff Man will be negative, 1) the symptoms really don't match me, and 2), 85% of the people with stiff man test positive in the blood test I already took, and was negative on, and only about 1.7% of the people with stiff man test positive on this second blood test. So, the odds of me still having this disease are bottomed off the chart, they're so low.

This is why I so wanted to ask him what is next, because it's something we needed to get ready for. So, it was a great conversation. At least I won't have to get a babysitter next week for a doctor's appointment, that's nice. I can take the kids with me to the hospital, easy.

So, just to introduce HSP to you a little.... it isn't one disease, but it is a CATEGORY of diseases. Genetic diseases. Currently, there are over 30 varieties that gene tests can be done for. There are also a very large number of other varieties that can't be tested for. So, a person could test negative on the first 30, and still have one of the many other untestable forms of HSP. The other problem is that each of the genetic tests for the 30 known types run about $6,000 each, my doctor tells me. Unfortunately, I don't have the kind of insurance that will allow me to pursue that.

If you want to research it, this is a good page of information: http://www.sp-foundation.org/. Some pages that describe it, I've found, describe me exactly, and other webpages are not quite on. This is because, again, it's a category, and there are slight variations in the different diseases.

The thing that is going wrong, the techincal terms, are: "axonal degeneration in the corticospinal tract". This is permanent nerve breakdown in the portion of the brain stem that controls voluntary movement.

There is no treatment or cure for HSP. All I can do is take anti-spasm medication, which I'm already on. That's it. Just get used to it and get on with life.

Hereditary Spastic Paraplegia is genetic, passed down from my family, but appears to be very rare in my family even, since so one we know of has anything like it. So, that's really good news, meaning it most likely won't get passed down to my kids or grandkids. It'll probably just be recessive for many, many generations, or maybe Brian's genes will knock it out of the gene pool completely. :-) Either way, no worries there. Big relief.

It's an incredibly rare disease. Because it's so rare, there isn't any research being done on HSP. There are a few tiny groups trying to raise money, but it's the more common diseases that get all the research money. So, maybe I was right, maybe I am like FDR, and have a disease that will be diagnosed someday, just not in my lifetime. I'm amazed right now, actually, with how accurate that analogy is turning out to be. Must have been inspiration from God, to help me understand everything! :-) Thank you!

So, this is excellent news, really! It means we're down to only two possible diseases. One more test, and then it'll only be one possible diagnosis. Yaaayyyy!!! Back in April, I prayed that I really wanted this done by the end of July, because we start homeschool every year on the first week of August! Wow, it looks like it's going to happen! It's a miracle!!

Well, that's it for now. It'll be about three weeks, I estimate, until that last test result comes in, but I gotta tell ya, it's such a relief to know that testing is almost coming to an end!!! I did the math, and with appointments, testing, and waiting, I've been actively pursuing this for 5 months now! I look forward to a break. :-)

I can really feel the help of all of your prayers and thoughts for me. I'm so happy we're at this point, and that we're almost done. And I'll actually know what's wrong with me. Thank you, again, to everyone!! I'll keep you updated as more happens. :-)

What Do We Do Next?

2009-06-30T21:46:00.004-05:00

It's been a week since my doctor called me with "I just want to do one more blood test, I'll call you and we'll set it up." I haven't heard from him. Lab tests are usually quite simple, and can be ordered like a prescription -- just write it on a piece of paper, then I go do all the legwork, like finding a lab, etc.

I think what's happening is that he can't find the test. I don't think it exists. I can't decide, as I watch from the outside and guess, whether he's lost the name of the thing he's testing for in translation (he's from South America and has a strong accent), so maybe he's just saying the name of the test wrong for English or something -- or, if the thing he wants to test for just isn't something people test for anymore (he's also really old), maybe that test was eliminated in favor of a more accurate test or something.

Anyway, that my pure speculation, as I wait. So, I called the office today and requested an appointment. I'm actually hoping he forgets about this blood test and moves on. I say this because I don't think the test exists. I've looked it up on the internet, with his spelling and other spelling variations, and can't find it!! Seriously, how many things exist and are no where on the internet. I've found some things that are similar in word, but are pronounced completely differently. Those things merely test for Stiff Man Syndrome, which he already tested for and got a negative result.

So, since we seem stalled here, my goal is to go see him face to face (where he can't cut off my questions abruptly on the phone like he did last week -- not his fault, he just has no social skills), and ask him if we should get that last test, if it's even possible, or it if really is redundant, or what. And then I can ask what we're doing next.

I don't think there are any more things to test, so I really want to ask him what we do next. We've covered spinal, autoimmune, and brain. That leaves the untestable, and there are a few of those that we'll look into next. The nurse says I may get an appointment with him next week. I'll let you know how it goes, of course! :-)

One More Thought

2009-06-24T19:32:00.007-05:00

So, I was thinking last night and this morning. Seeing as how my doctor has now gone through every testable thing that even somewhat describes my symptoms, I was feeling at a loss, and not knowing where we would go next. It will be weeks before I can see my doctor again and ask him what comes next. I was wondering, what if he has no ideas? Should I get ideas for him?

Then I remembered that many months ago my doctor and I talked about how it could be Hereditary Spastic Paraplegia. This is a disease that you can't test for, you merely eliminate everything else. So, we just had to wait and run the tests. I had forgotten about it. However, now that we've eliminated everything else? hmmm. :-)

I looked up the condition again today, to remind myself about it, and was shocked at how exact the symptoms are to mine! Of all of these autoimmune and spinal cord diseases we've been testing for, none of them described me exactly, and most didn't even describe me much at all. It was quite a relief to read something again that really did describe me.

So, I called up my doctor's nurse, in attempt to get a message through to my doctor. I asked her to please remind him that we once talked about HSP, and to ask him to see if he thinks it describes me now that we've run all these tests.

Who knows if the message will actually get through, or what my real diagnosis really is. Time for more waiting. Someday, I'll get another appointment, and then I'll get to see what he thinks of all of this. :-)

Thanks to all of my great friends and family for hanging in there with me through all of this! I couldn't do it without you and your support and your prayers!! Thank you so much. Lots of love back at ya!! :-)

Oh --- and bonus points to anyone who knows where this picture (above) was taken! :-) I didn't take it, I found it on the internet.

My Doctor Called

2009-06-23T18:12:00.007-05:00

Ok, my doctor called while we were at the pool today, so it was kind of an unexpected time for his phone call. He said the tests for the GAD antibodies and for the Voltage-Gate Potassium Channels (VGKC) antibodies both came back negative. So, good. More diseases we've eliminated. The problem is that he ordered a third test, for Amphysine antibodies. That test got lost in the runaround because no one knew where to send it to. Apparently even the Mayo Clinic doesn't do that test. So now my doctor and his staff are trying to find someone in the country who can do that test, then I'll go give them more blood again. Another 4 hours checking into the hospital just for a blood draw, and another at least two weeks waiting for test results.

The worst part is that I really don't think this one will be positive either. From what I've read on the internet, it looks like that test is for some disease in which you get stronger the more you try to move a muscle. I'm the opposite, getting weaker the longer I use a muscle. So, I don't think we're going down a very good path here. But what other paths are there? Are there any other paths? Maybe I should just get used to no diagnosis.

I've been thinking about FDR. He thought he had polio, but scientists now are looking at his symptoms and think he probably had Guillan-Barre' syndrome instead. There are a few differences, but his life was the same either way, with polio or with GB. There was no test when he was alive to identify what he had. When I first heard about this, I was shocked, thinking: "How could he go through his whole life thinking he had some disease he didn't have?" But now I'm thinking: "Maybe it doesn't matter what it's called. Having a more accurate diagnosis wouldn't have changed his life at all. Neither was treatable during his lifetime."

For me, maybe it won't matter what my diagnosis is either. Nothing that it could possibly be has any treatment or cure. So knowing probably won't change anything. Except maybe it would help when people ask "What happened to you?" Right now I keep getting tempted to answer: "Nothing. Nothing happened to me. I'm just living my life day by day, and I don't know why I can't walk." Of course, I'm sorry to all of my sweet friends and loving family when I don't have an answer for you. I've tried. I've taken many tests, and have been patient waiting for weeks between each of them. And I'm still taking them. But maybe there won't be an answer that we can find. Maybe whatever's wrong with me won't be discovered and diagnosable for another 100 years.

Doctor Update

2009-06-23T11:28:00.003-05:00

Just writing to let you know that my doctor's office just called me. We sent my blood to the Mayo Clinic 2 weeks ago today to test for antibodies for rare neurological autoimmune diseases. We expected to get the results back by last week at the latest. However, they were calling to let me know that my doctor has not yet received my test results. He will call me when he receives them.

Sunday Night Family Bike Ride

2009-06-22T12:44:00.009-05:00

A video I took while we were on our bike/scooter ride.

Stopping to let cars pass. The boys are on their bikes, and I'm on my scooter. I love that I can join them on their bike rides now! It's hard to tell, but Sam just got a new bike Saturday. Not only had he outgrown his old bike, but it was falling apart. The brakes weren't great, and always had a time-delay on them; and the chain came off at least once a day. Now, one day into using his new, bigger and fully functional, bike, he's riding like a pro again!

Oh, and Brian and the boys made a great house of cards yesterday, too. They used every card in the deck by the time they were done! What a great Father's Day! :-)

Sam and Brian.

Alexander.

Lots of natural sunflowers and great pillowy clouds decorated our evening!

Georgeous man!!

Videos -- Sam Being Sam

2009-06-22T12:31:00.002-05:00

This is such a fun video. He was doing this naturally, so I started the camera rolling!

Sam playing piano. He plays it a lot faster in the second half of the video, lots of fun!

Time for School Pictures & Alex at Scout Camp

2009-06-21T19:12:00.013-05:00

Here they are, the official school pictures for 2009-2010. I know you were waiting for them!

We do this every year, partially to have annual school pictures, like they would've had in public school. That's fun, because you can see them grow year by year. Also the pictures are for their Homeschool IDs, from homeschoolid.com.

Alexander

Sam

The boys together.

and, of course, the crazy picture!

Here's a great video Brian took of Sam going down a water slide at Cub Scout Day Camp two weeks ago.

Scouter Alexander!!

He earned belt loops in: Ultimate Frisbee

BB Gun Shooting

and Archery!

Scooter Thank You Letter

2009-06-17T20:29:00.003-05:00

I just wrote my thank you letter to the people from whom I won the scooter in Dallas. I'm not trying to show off that I wrote a thank you letter or anything, I did it because I really wanted to. But I thought you guys might like to read it too, because it describes all of the new things I can do with my scooter, and I wanted to share with you how wonderful that is! :-)

Oh, also, it was a good chance to remind my kids of the Bible story about the 10 lepers, and how the one said thank you. Trying to be a good example for my kids 'n all. :-) I hope it worked. :-)

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A few weeks ago, my family and I attended Turning Point’s 2009 Dallas Extravaganza. At that event, I won the Pride Celebrity X electric scooter in the raffle! I am so incredibly happy that I went to this event, and that I won your scooter. I love it, and it is really raising my quality of life! I wanted to take the opportunity to fully express my gratitude that this item was available in the raffle.

I didn’t even know I needed a scooter, but now, after only two weeks, I don’t think I could live without it! I was the type who pushed my wheelchair hard, even over very rough terrain and extreme hills, and my shoulder was suffering for it. Now, I am able to use the scooter to get around outside without over-exerting myself!

I’m so happy it’s the outdoor type scooter. I even love the blue color! They are exactly what I would have chosen. Having a scooter to use outdoors is exactly what I needed. The two things I really miss since I became a wheelchair user a little over a year ago are gardening and long walks and bike rides. Your scooter has given them back to me!! Now I can move all around my hilly, bumpy lawn quickly and with ease, and I can access all of it to water my lawn! Last year all the grass died because I couldn’t access most of it. I love lawn watering, it was a fun hobby of mine, and I’m so thrilled to be able to do it again! I can also access all of my potted plants all over the property easily. Looks like I may have to really start gardening again. :-)

The other joy that has returned to me is long walks and bike rides. My husband and kids ride bikes around the neighborhood and on trails quite a bit. I was considering buying a handcycle, because I desperately want to join them, and I can’t push my manual wheelchair fast enough to keep up with them. However, I couldn’t afford a handcycle. Even if I could, I was concerned I’d hurt my shoulder more. Now I am going with them on all of their biking tours! I love it, I love getting out, and I love feeling like I’m part of the family again!

When my kids used to go bike riding without my husband, I had to have to follow them in my car in order to watch over them. That was just wrong! My kids and I are so happy that I’m “with them” now when they ride bikes! I’ve been heartbroken this past year thinking of all the things I will miss doing with my children. I don’t worry about those things anymore! I now chase my 9-year-old and 7-year-old sons around my yard and around my neighborhood! I feel like a mom again! We have been having so much fun playing together now that I can move around better. I love it!! I also look forward to taking my kids to grassy and rocky parks and trails around town. I’ve missed all of these things so much! Now I feel so free to be able to go almost anywhere I want to go outside, no matter the terrain, the incline, or the distance. Thank you so much for giving that back to me!!

I’m very impressed with this scooter and its technology. It’s very sturdy, and well made. I like that it’s rugged, and I’m very happy that I won an outdoor scooter, since that is mostly how I will use it. I also use it in my kitchen sometimes, such as when I am tired, and when I have to go back and forth carrying lots of items as I cook and clean. I can carry so much more with my new scooter. That basket is a lifesaver!

I am also impressed with how slow it can go. When I’m making tight turns in my kitchen and living room, it’s comforting to know I can take my time and get the turn right. It really helps me to not run into things too often. Very slow, or as I call it, Full Turtle Mode, is a very great invention. Don’t get me wrong, I use full rabbit mode as well. Many evenings I can be caught joyriding in my scooter at full speed up and down the street in front of my house! Whee!!! Sometimes, a wheelchair-bound person just needs a little speed!

Also, and this may seem like less of a big deal, but I’ve found it to be really wonderful: it’s nice to be able to move around in something other than my wheelchair from time to time! It’s such a freeing feeling to know that I have more than one set of wheels that I can use to get myself from place to place. And it’s all mine! Just knowing that makes me feel more mobile!
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As you know, that first year in a wheelchair is the toughest. I completed my first year only a month ago. Winning this wonderful scooter has also changed my life because, for the first time since that awful year began, something really good happened to me!! I can’t express how much that means to me, or how much I needed it! You have done a wonderful thing by donating this scooter, and I will never forget it!

Thank you so much for this great gift, and for the great sporting opportunities you have now provided for me and my family. We had a great time! I know you probably hand out many donations, but for me, this gift changed my life! I thank God for your kindness in offering this scooter to someone like me. Please know that your compassion and your thoughtfulness are fully appreciated!!

Sincerely,
Brooke

Dallas Extravaganza 2009!

2009-06-11T13:27:00.046-05:00

This past weekend was very busy for us! I think it doubles as both our week of Summer Vacation activities and as my 15 minutes of fame. :-)

Thursday night, Alexander and I went to see Glenn Beck in the movie theatre, just a fun thing for the two of us, since we both like him.

Cornfield near Dallas

Friday, we packed our bags and drove to Dallas, 4 hours away. The next day, Saturday, was a huge event with 25 different sports activities for the disabled. Here’s the organization. http://www.turningpointnation.org/ We just showed up, signed in, and had a great time. We got to go fishing, shoot bb guns, archery, bowling, rock wall climbing, and the best: waterskiing! The waterskiing was fun. While I was skiing, my husband and kids got to ride in the speed boat that was pulling me. That’s why the pictures are from the angle they are from, instead of from the shore. Here are some of the pictures. …

Friday: Sleeping on the drive there.

Sam and Alexander bass fishing, in a pool. This is the best way to fish, because you catch a fish about every other minute!

Archery!

Yay Brian!

BB Gun shooting.

Rock wall climbing. Alexander.

Brian reached the top!

Sam liked to climb over and over. He couldn't get enough. This is mom's silly attempt to climb. I didn't go anywhere.

Waiting for my turn at waterskiing!

In the "cage", the sitski, about to be lowered into the water.

The guys are helping me get in position before we take off!

Wheeeeee!!! I giggled for the first ten minutes straight!

Alexander on the boat during the skiing.

What great looking men!

Afterwards, they carried me back up to shore and to my chair.

You can see all of the pictures from that day here: http://www.facebook.com/home.php#/album.php?aid=18130&id=1617935716

It was a great day. They had a raffle at the end of the day. Every event you do gives you one entry into the raffle, so, just because we followed little active Sam around, we ended up doing a LOT that day, and had a lot of entries.

The awards waiting in the middle of the gym.

We didn’t expect to win anything, of course. I was the last person to go waterskiing, and the raffle was about to begin, so we thought we’d missed it entirely. But we’d been waiting hours to go waterskiing, so we wanted to do it. After skiing, we went to the raffle location, and turns out we didn’t miss much. They apparently had some basketball scrimmage while I was skiing. Cool.

Enjoying our first three raffle winnings.

After a lot of things were handed out, they called out “Brooke Hook?” I raised my hand high and said “that’s me!” I’d heard the guy mess up on names before that, so I decided that if he called anything remotely close to my name, I would say it’s me, and we could work it out later. It was funny, we told him I wasn’t Brooke Hook, but Brooke Hack, which arguably isn’t much better. :-) We won a pool float, which I love and will totally use, since I can’t swim anymore. :-) I was happy, I actually won something, so cool! Later, he pulled my name again, “Brooke Hack!” – and all the people near me yelled back “Brooke Hook!” while laughing. It was so hilarious! I still smile remembering it! :-) I felt so happy. We won a disc golf set. Brian’s been meaning to play more disc golf for about 8 years, so now he can! :-)

Soon after that they called my name again, and by now, I’m starting to feel really special. We won a $50 gift certificate to Bass Pro Shops, who sponsored the event. Some people who won these just returned them, but we were thrilled to have it because my two boys have wanted their own fishing poles and equipment for about 4 years, and I kept putting it off because of the money. But the coupon was only good at a Dallas location. So, instead of driving straight home after the event, we went to the Fishing Store, and picked up poles and fishing gear that afternoon. It was 8pm before we even left Dallas for the 4 hour drive home. Good thing Sam and Alexander fell asleep on the way home – since Sam had a piano recital the next day. (See my next blog entry for video of Sam's recital).

Then, and we still can't believe this... he called my name again. I wasn't paying attention that time, so I didn't even know what I had won. It was a top of the line electrical scooter!

My favorite parts: it's a beautiful blue, and it's indoor/outdoor. And since I'll mostly be using it outdoors, that's perfect for me! Most are just indoor types. But this one is made to go over rocks, dirt, bumps, and grass, which is exactly what I'm going to use it for! I don't know how they knew, I mean, they didn't. But it's been my biggest sad point lately, is when I want to go over rugged ground, and I really can't, because I end up injuring my shoulder too badly. So, it was very limiting. Now, maybe, when the boys go fishing, I can go with them!!!

Here's another shot of it, from my phone camera, while it's charging in the garage. It's a Pride Celebrity X, 3 wheel. I'm having some trouble sitting in it, without sliding off of the seat. I need help sitting up, and my wheelchair is specially adjusted for me to hold me in it, since my torso muscles don't work that well. This is why the seat cushion is missing in the photo above. We are adding some modifications to make it work for me. Hey, you know, free scooter! We'll make it work.

So, this is the 4th thing we won at the raffle! Seriously, lots of people won nothing, and we won 4 times! They only gave stuff away to disabled people. Anyone standing had to explain what was wrong with them. One guy was an amputee, leg, but people were blocking his legs, so the guy in charge couldn't see. So, the guy in charge joked "show me your leg!" It was hilarious.

The top prizes for the day were trips on Carribbean cruises for a week. I somehow, thanking God, won this scooter!!! It's a $2,000 value, and they just handed me the keys and said "can you get this home?" And I'm like, ya!! (Good thing we had extra room in the back of our van). We used the long 7 foot ramp in my living room to get it out of the car (it's 191 pounds!).

I can use it to go on trails and such, and not destroy my shoulders! It's going to be a lifesaver! I'm so excited. And I can go around my neighborhood, like I used to do when I went on walks for years, and I can go with my kids when they ride bikes! I couldn't keep up before, in my w/c. Plus, in the neighborhood, the sidewalks and roads are all graded, at an angle, for rain runoff. But it makes me have to push with just one arm, which is a killer on my shoulders. I can't do it. Another thing we've been wanting to do is find a way for me to keep up with Brian when he goes running. This will solve that problem!

And it's BLUE! It's so pretty. I actually cried when they gave it to me. They called me out into the middle of that gym, as seen in an earlier picture. And it started to hit me what was really happening, and I started crying. They gave me the microphone so I could thank everyone. I didn't know what to say, but I did my best.

Later, at the fishing store, people actually recognized me from the event! I think this is my 15 minutes of fame! It was lots of fun.

I'm so happy about this scooter, because it's really going to open up the world for me. Yesterday, I was able to water my grass, while being on the grass! I can go over grass in my chair of course, but our front yard has very steep hills which are too much to do in a w/c. It's such an amazing feeling to go up the hill in my front yard without killing myself! I'm really going to be able to do a lot more, and maybe not need shoulder surgery in 20 years like some people need.

Thank you God! I'll use it well! :-)

First Scooter Ride

2009-06-11T13:01:00.000-05:00

Yes, I know, I really need to name this thing! I think I'm just going to wait, though, until the perfect name comes to me. Until then, we're just playing around and calling it whatever: Matilda, Josie, Denise, Shelly, whatever. It'll take time.

We still haven't completely worked out the seating, but it's already much better. But I couldn't wait anymore, I went on a fun scooter ride around the neighborhood last night!

I'm at the park, and I'm not exhausted! That's a first!!!

We've had some really beautiful sunsets lately.

Sunset at the lake behind the neighborhood. I haven't been able to get back here in 3 years!! I've missed it.

The scooter back home in my living room. You can kind of see the changes we're making to the seating and backing.

Oh, mom, I talked to my tax guy, and he told me what we'll need to do next year to claim it. It's all taken care of.

Sam's Piano Recital

2009-06-11T13:00:00.008-05:00

Sam had his first piano recital last Sunday. He's been playing for six months now, and he's having a great time! Here is the video of the song he played for the recital....

Sam and his instructor, Tricia.

All of Tricia's students who performed that day. She teaches both children and adults.

Doctor's Appointment Today

2009-06-09T20:43:00.002-05:00

Hey everyone. My doctor's appointment was today. Here's what happened, and what he told me.

He said the MRI results don't show anything. That the variances on it are just normal variety, like if someone's ears are different sizes on each side, it's normal, and doesn't mean anything.

He reperformed my EMG test. I had this done 8 months ago, but he didn't trust the results, which showed that my muscles were fine. He did it again, in MUCH greater detail. We were in his office over 2.5 hours, mostly doing the test. Result: yep, it's true, my muscles are still perfectly fine.

He said it's good to know. We have a lot of eliminating to go through, and that was one more thing we eliminated. He said I'm an interesting case, though he's sure I don't want to be interesting. :-)

The test stressed out my muscles and nerves a lot. It involves electric shocks and needles stuck into muscles, so it was painful. My leg was in full spasm mode by the end, even more than I've ever seen it before! So, now I'm tired and sore, but it's all necessary if we want to finish this.

Next, he wants to test my blood for very rare things. So rare, that I had to wait in the office for 1.5 hours while they called around town to find out which hospital could take the blood for these tests. We finally found one, so next, I went there.

I checked into the hospital, another hour. Then to the lab. They took I think it was 8 vials of blood. The trick is not the taking of blood, but that it then has to be sent to the Mayo Clinic to be processed. So, I guess that would be the on in Phoenix. The tests are that rare!

So, we've eliminated central nervous system, brain, and muscles. These new blood tests are testing for antibodies for autoimmune diseases that attack nerves.

The good news today is that I was able to get the doctor to give me a prescription for an anti-spasm medication, which I needed. I was on a weak over the counter version, so this should be nice.

So, that's it for now. I'm tired. I was at various doctors, hospitals, and pharmacies, and driving, from 9am to 5:20pm straight. It was a long day of diagnosing.

Appointment

2009-06-03T10:19:00.005-05:00

For those of you who've been waiting with me -- and I know there are many of you -- I have a doctor's appointment! It's in a little more than a week, so I won't be able to tell you how it went until after that time. But, rest assured, I'll post here as soon as I get home from that appointment, and let you know how it goes.

The appointment will probably consist of him reading my test results, thinking out loud, asking me if everything's still the same, which it is, and then him ordering more tests. So, then, over the next few weeks, I'll take more tests at various locations, and then I'll wait for another appointment with him to review those results, maybe another month or so in the future.

Thanks for everyone's support and love.

Waiting is a killer...

2009-05-26T12:24:00.003-05:00

Maybe the nurse shouldn't have told me that the doctor would be in on Tuesday. That's today. Probably only the 2nd day he's been in the office all month. Please, please, call me! She said she couldn't make an appointment with me until he was in the office --that's today!! I'm dying here, I can't walk, this is urgent. Call me and let me get a #$%#$n appointment!

No doctor's appointment yet

2009-05-22T11:07:00.002-05:00

Just wanted to keep everyone informed. I called my doctor's office Tuesday, to see when they were going to finally let me make an appointment.

They called back today, and said "we'll call you when we're ready". Apparently this guy is doing something else with the rest of his time, like maybe teaching. Sometimes he only comes into the office once a month.

She said he'll be in next Tuesday, at which time she can ask him when to next schedule me. I hope it's not a month away.

One Year Today!! I made it! :-)

2009-05-21T17:39:00.009-05:00

Zoe the wheelchair today, with new tires, rims, and wheels. Much better looking, and much easier to use!! :-)

Zoe last year, when new, with grey tires, spokes, and handrims.

I wanted to tell everyone that I'm celebrating my 1st anniversary as a wheelchair user today! I know celebrating might seem a funny way to look at it. I'm not celebrating that I have to use it, rather I'm celebrating how much I've been through this past year, and that I made it a whole year! I'm quite proud of myself! Yay!

At the grocery store today, as I was thinking about the "whole year", I realized that I'm no longer uncomfortable in the chair. I don't feel odd or unusual around standing people when I'm sitting. That's so wonderful to me. At first, I didn't even care what other people thought, because I was too busy feeling really uncomfortable myself, knowing it was so unusual, and such a big change. Now, it feels completely normal to me to be at this height, and to move around as I do, and I am very happy about being me again! So, it's been a good day!

Also, yesterday I got new wheels, which I've wanted for the whole year. It was finally time, financially, to get them. They are very lightweight, all black, black spokes -- only 12 spokes per wheel instead of 36 on my old wheels --, they roll a lot easier, easier to push, I have anti-marking black tires which I've also always wanted, and vinyl coated handrims, which are actually a medical necessity for me. My hands don't work well enough for me to grip the slippery aluminum handrims that I used to have. I got the aluminum last time because it was cheaper, so I hoped it would work, I've learned my lesson. I had to use gloves and wrap the rim in tape half the time, and all of the time I had to push while grabbing the rough, dirty tires. Yesterday is the first time ever I actually crossed a room without touching a tire! I'm so happy, my hands are finally being taken care of. It's so much better on my arms and my hands with these new wheels, tires, and rims.

Plus, look how pretty Zoe is now!! I've always wanted her to be all black with the purple accent. Now, she's all black, sleek, and looks great. Before, those wheels, tires, and handrims were all different shades of gray, how boring! I didn't like it.

Life is very good.

For the last 4-6 months (we've lost track) Sam has had night coughs. Evening, while sleeping, and morning. Strange, huh? Not productive, no congestion in chest or nose. They are dry coughs, and they are causing everyone in our house except Alexander (who can sleep through anything) to lose lots of sleep. No signs of illness or allergies. We tried cough medicine, cough drops, allergy medicines, and humidifiers. Nothing helped. Sometimes he coughed so much it led to vomiting.

Anyway... Brian did some online research on it last week and found out that one thing that can cause night coughs is a mild form of asthma, especially if it's in the family! I was excited. We tried my inhaler on him that night, and it worked! But, it made his chest hurt, it was too much medicine for a kid. So, I knew right then he needed to go to the doctor. Of course, we ended up taking Alexander to the doctor last week instead, so Sam had to wait till this week. We went in today, explained what he's been going through, and that I had asthma as a child, and that the inhaler worked.

She checked him out, and says he has what's called cough-variant asthma. It means it's a mild version, where the only symptom is dry coughing. Yep, that's him! So, we got prescriptions for Singulair, which should work long term, and an inhaler for acute situations. Our whole family is really happy that this will be getting better in the next week. We're tired! Especially Sam, who has been lethargic half of every day for the past few months. We're hoping to get our energetic, happy Sam back! :-)

Alexander didn't need stitches!

2009-05-12T19:14:00.002-05:00

Ok, so the boys were playing a "friendly" game of baseball in the backyard, and for some reason Sam threw the bat, and warned Alex to move, but not in time. It's a rubbery kind of bat, but with a hard plastic tube at its core, which is currently exposed because some of the rubber is missing at the top. So, the hard plastic tube hit his head pretty hard. I didn't know if it needed stitches or not, I don't have a lot of experience with that, so I took him to urgent care, just to be safe. They super cleaned it out (much better than I would have, so that's good), and they said since he's a mature boy, they can trust him to keep it dry, not to pick at it, not wash his hair for 3 days, and wear this pressure bandage on it for the next 3 days. With all of those things, he doesn't need stitches. If he were a little kid, it probably would've gone the other way. I never would have known to not wash his hair, or to wrap up his head for 3 days, so it's a good thing we went. Alexander was such a great trooper in all of it, and was so brave, especially during the harsh cleaning of it. I was very proud of him. The doctor even said he was "very articulate" when he was describing what happened. :-) Of course, it was all a little traumatic, so Brian's picking up chinese food for dinner, and we're going to go rest now. Love you all!

MRI Results

2009-05-12T14:52:00.005-05:00

Hey there friends. After another longest week in history, I finally got the MRI results today. This is just the written report from the radiologist doctor. It has yet to be interpreted by my doctor. That will happen next time I see him. He's not in the office that often, so his nurse is supposed to call me someday to make an appointment to see him again. But first, we have to give him time to come up with possibilities for further tests for me.

The lumbar scan was clean, as I expected it would be. For the thoracic: there is "dilation of the central canal within the cord at T11". Based on my abilities, I was guessing the damage was around T10, so I was close.

So, whatever that means, I guess we'll know more in a few more weeks. The interesting thing here is the central cord part. My cervical spinal scan (neck) that was done a few months ago showed "slight prominence of the central canal of the cord from C4 to C6-7."

So, whatever's wrong with me, it's definitely in my spine, and it definitely involves the central cord. It's such a great relief to know that much! I'm so happy for this knowledge and that they were able to see it with modern technology!! :-)

I can't wait to see my doctor again and see what he thinks of this, but I know it'll probably be a while, so I'll try to be patient.

Pokemon from Grandparents

2009-05-07T14:33:00.005-05:00

Grandma and Grandpa. We just got your box today. The kids are so excited!!!
Here are videos below for you.

part 1

part 2

part 3

MRI test done

2009-05-06T10:27:00.007-05:00

I think I'm going to always start off a new blog post with a pretty picture, if there are no relevant pictures to include. I have a collection of just nice pictures I like, so I can always grab from them to decorate any visually boring blog post.

I can't believe it's only Wednesday. I feel like I've already done a week's worth of stuff with all of these doctor's appointments.

I got my thoracic-lumbar MRI with contrast last night. Late last night, they started late, then the procedure was really long, so I wasn't out of there until 10:30pm. I was in the tube for just over an hour. At least it was the "open" tube. So, during parts of the procedure I could see some of the ceiling. I hope I stayed still enough, I always worry about that. At least I'm not dizzy now like I am after brain MRIs, that's tough. Today I just have to drink a lot of water to help get the gadolinium out of my system.

So, trying not to be nervous. See, if this test doesn't show anything, then we move on to the painful, and rare tests, where we only test for one rare thing at a time, that will be hard. So, I'm hoping that this test will fhow stuff and we won't have to go randomly taking chunks off me to do more tests. But, God's will be done. I'll just do whatever comes next.

I'll get a written report of the MRI results sent to me in the mail in about a week, so I'll let you know what that says. Then, sometime after that, probably in a few weeks, the doctor's office will call me to make another appointment, so we can decide which further tests to take. Yes, it's all about the patience.

A wise man told me yesterday, though, that I should remember that my life is still occurring. If this takes several months or longer with the doctors, for example, I should remember that it's in the background, and I'm still living my life. Not to put my life on hold while I wait and hope for an answer. That's good advice for me. I needed it. I always like to wrap things up tight and then move on, so when we can't do that, I need guidance of how to get through. This was perfect for me. Thanks!

And thank you again to everyone who is thinking of me and praying for me at this time. I again, could really feel those prayers working while I was in the MRI tube. It gets a little intense in there sometimes. My mom said it's like they put you in a coffin then bang on it with a sledgehammer. She's right (and very funny). This is my 4th MRI, so I already knew what it was like, but this was a double, being both throacic and lumbar, so it was twice as long. But I didn't feel alone, I felt comforted by the Spirit, and I am so grateful for that! Thank you to all of you who are helping me through this!! :-)

Oh, the bike. I haven't decided what to do about the handbike that's for sale that I'm thinking about (pictured above). We've finally determined through email and pictures that it's an XLT Pro, not an XLT, which means it has lots of extra features that will actually be not what I wanted, and that the starting price for a new one is $3k instead of $2k. So, obviously, they want more for it used than I wanted to pay, since they're starting with the higher price. Throw in that the following are all wrong for me: seat size ($400 to replace), wheels, tires (replacable), brakes, and gears. I wanted the XLT versions of all of these. So I'm not sure if it's better to pay a used price for a bike that's not right, and is only a few hundred dollars below what I would pay for the cheaper bike I originally wanted. But then, this is a lot of money we're talking about. I don't know what to do. I'll let you know how it goes.

So, time for homeschooling now. Have a great day!

That Went Well

2009-05-04T10:28:00.011-05:00

Hey friends. I went to the doctor's appointment this morning. It was with the 3rd doctor I've seen trying to get diagnosed with why I can't walk. This guy was great, he was exactly what I wanted in a doctor. He was a little eccentric and unusual, but he had his mind wrapped around the facts and the medicine and the symptoms I mentioned, and I know he was working hard to find the best answer. He was even open to ideas I shared that might help. I really liked him!

Oh, and the one thing I was really worried about, only getting 5-10 minutes to explain everything, didn't happen! He talked and examined me for 1 hour and 15 minutes! It was very thorough, and I'm so grateful that he put that time and effort into helping me.
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He says he doesn't know what it is yet, he doesn't even have a category. He says it's very rare, or a rare form of something. And when you're on your third doctor, I think it's pretty well agreed that you don't have something common. He listed a lot of really rare and far-out-there diseases, most of which require invasive hospital-based tests, so before we go there, he wants to think about it. (...did I use the word "rare" enough just now?) :-)

I'm all for that! I don't like waiting, of course, but at least someone will be working to help me, that's wonderful! He says he needs time to think, research, and make a list of possibilities. Then later, his nurse will call me and set up another appointment so we can work on which tests to take.

He said this is a zebra. I knew what he meant when he said that. I've heard, I don't remember if if was from reading online or from TV (House or Scrubs), but I've heard that in medicine they teach them to always treat the mystery diagnosis as if it's a horse, which is much more common -- look for the common things first. Because if you see an animal and it's either a horse or a zebra, it's usually a horse. He said this is a zebra, which means medically very rare.

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In the mean time, he did order that thoracic-lumbar MRI that I was secretly hoping for! So that's wonderful. So I'll probably end up getting that done later this week.
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So, it's going well. I'm going to have a hard time calming down today, I was so nervous. But it went well. I just hope he can eventually find it, and not send me to yet another doctor.
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Thanks so much for everyone's thoughts and prayers. I could tell they helped me there today, and I'm so grateful to each of you for them!

Bowling

2009-04-27T21:44:00.011-05:00

Ok, no real updates today, except to say that I confirmed that my new doctor takes my insurance. So, that's good.

Brian

Alexander

Sam

Who took this picture? No wonder Brian wanted to "hold my phone for me".

We just went bowling for my first time since. Well, the first time bowling that I actually tried to bowl. The trouble is that I didn't get 2 frames into it before everyone I knew and perfect strangers were coming over to offer unsolicited advice. I had been planning this for 4 months, that I would come one day and try it out and try all the different possibilities of how to bowl and to find out what would work best for me. I saw lots of YouTube videos, and everyone did it a different way, so I was excited to find out what my way would be. I needed more than two frames to find that out. This lady was a caretaker, helping a very handicapped lady in a powerchair to bowl two lanes over, using a ramp for the ball to fall down towards the pins. Nothing wrong with that, except that this lady is apparently used to helping the helpless, and she's probably used to them accepting any help she can offer. Only one problem, I'm not helpless. She's never met me. She could've asked before just telling me what I was doing wrong.

I told everyone that I needed more time to try it first, to find my way. The lady answered: "sorry about your bad attitude". She really hurt my feelings. Just because I wanted to try it myself, they think I'm being rude. I really didn't mean to be, I was trying to be nice and to explain myself. This was actually quite a breakthrough for me, in the past, I would have just left without speaking to her. I tried really hard, by speaking to her, to show her respect.

Anyway, I did figure it all out, mainly I was concerned about hurting my chair with the ball, so I figured that if I bowl slowly, it all works best. :-) And of course, the kids had a great time!

Today's Update

2009-04-23T20:06:00.003-05:00

Thank you so much for all of the kind words here and in emails!! I have the best friends in the world. Thank you. I really appreciate all of your prayers and thoughts, I know it will be of help during my quest. :-)

Today, I got the results back from the Second Opinion doctor looking at my cervical spine MRI. He agrees that there's something there from c4-c7, but doesn't know what it is. Could be an artifact or not. He recommends redoing that MRI, but this time doing cervical-thoracic, both with contrast.

I think that's a great idea, since the thoracic scan is my ultimate goal here anyway. And contrast can only help, right? :-)

Anyway, that's all that doctor could do, he's a neurosurgeon, which I don't need. So, I went back to my first neurologist (who couldn't figure me out), and got a referral for another neurologist, and made an appointment with him today.

That appointment isn't for another two weeks, but at least I finally feel like I'm headed in the right direction. I feel like I might be going to a doctor that can help, and I know I'll have lots of records and test results to show him that might help him find out what he wants to test next.

I've done about 5 rows in my knitting so far, I think I'm getting the hang of it. Of course, there are errors, but hey, it's my first time. I'll bring it tomorrow and you can all show me what to do better. :-)

11 Months!

2009-04-22T18:30:00.024-05:00

Hey there everyone. Yesterday marked 11 months since I've been a wheelchair user, and almost 14 months since I began having serious mobility problems. The problem is, just because a person gets a very visible problem in their life, it doesn't mean they also are given the ability to be able to talk about it. So, I'm very sorry to those who have asked in the past year, I really am, I just wasn't ready. But I think I am now. :-) .......

I've decided to try to include you, my friends, more in my life, and to not be so private. This blog will be like my "CaringBridge" website. I'll try to keep it updated with how I'm doing and what the doctors find as it happens.

What's wrong with me? We still don't know. It started small, with just leg pain and the strange inability to run far as a child, no matter how hard I tried. It grew. Ever since I was 17, I very much wanted to be a runner and/or a tennis player. I tried running, a lot, and it was always awful, my whole life would spiral down when I tried; no energy in the days after a run, leg pain that wouldn't go away, and the highest stress levels I've ever known. I didn't know why, but I couldn't run. Bikes haven't been useful to me since childhood either, I've just never had the leg strength for it as a teenager or an adult. Walking is simpler than bike riding, just fall on one leg then fall on the other. Bike pedaling was too complicated for my legs.

So I took up long hikes in the desert. I loved hiking, it was my way to get out, think, listen to music uninterrupted, exercise, and to test myself towards continual improvement -- which I loved! I decided many times that I would hike until I die, that it would be my thing. I loved it.

Hiking has always hurt, I just thought it was part of the experience. At ages 18 through 21, I used to go on great long hikes at Sabino Canyon, and by the time I was on the last few miles, I experienced so much left leg pain that I began to wonder how long that leg would last. I was so scared I used to have dreams that I didn't have that leg anymore. But once I got home from hiking, I usually tried not to think about it.

After I had kids and moved to Austin, hiking became walking around Town Lake trail with a double stroller -- I loved that too. I went many miles, many times a week. It hurt more though, with the pain in both legs and especially in my hips now, too. My left ankle was sprained most of the time. I never "injured" it, just something caused by simple walking. My podiatrist says that I've permanently stretched out two of the three ligaments in that ankle, apparently from repeated sprains. Now, if my foot it turned for a moment up on it's side and my ankle is at an angle, and this is while sitting, it will get sprained -- no joke!

For the past 6 years, I've been seeing a physical therapist/massage therapist every two weeks to try and fix my aching leg and hip muscles, and realign my leg and hip bones. It's been very painful, in the last year of my walking, seeing the therapist was more painful than the unmedicated childbirth I had with Sam.

About 3 years ago, it got to the point where if I just walked a mile, I would sprain both of my ankles, both of my knees, and do some kind of equivalent damage to my hips and butt muscles. This happened every time, I had to stop hiking in order to save my body.

In the next two years after that, I also had to give up gardening and home improvement, both of which I was avid at doing and gave me great joy. Life had gotten sadder and sadder, as I no longer wondered what it would feel like to be very, very old. I knew, and I didn't know how much longer it could go on like that. I didn't think about wheelchairs as a solution, but I did think about dying.

On March 1st, 2008, the changes became a lot more rapid. I don't know why. Instead of pain being my biggest problem, it was weakness. Incredible weakness from just above my belly button down. Inability to put one leg in front of the other while trying to walk, so I learned to just swing it from the hip, that sort of thing.

Grocery shopping became more and more impossible, I had to buy only a small part of my list at a time, and even then, I'd have to sit down in the middle of the store often. Plus, that would mean going to the grocery store more often, and one attempted trip would leave me completely exhausted for the next two days. I never caught up.

I would pick one floor of my two-story house stay there all day or most of the day, even if it meant not eating because the kitchen is downstairs. Yes, walking was so hard that I gave up eating. Even on the days I got downstairs, I couldn't stand long enough to make a sandwich or prepare any food. During this time, I tried a cane, then forearm crutches. My arms got very strong, and they helped me get around a little, but they only bought me a little time.

Many of you were so kind and tried to ask me what was going on. But I didn't know. I didn't even get to a doctor by this time. I was struggling so hard just to survive, I didn't have any extra energy for anything! So, I didn't answer people's questions, and I didn't make doctor's appointments. I was too exhausted from living.

Eventually my hunger and the hunger of my family motivated us to buy a mid-cost wheelchair. The plan was just to use it in the kitchen and for grocery shopping. That plan lasted about two weeks. Before that chair, I had given up all moving around except the attempted grocery shopping trips, and church. No errands, no cleaning, no preparing food, no being with the kids unless they came to me, extremely minimal walking around the house, just sitting all day. I could do no more. The wheelchair helped me get around more without using all of my energy to try to move my legs. But the house wasn't accessible, so I still had to use arms and crutches to get around some places, and I'm a girl, my arms aren't that strong!

After those first two weeks, I tried to walk at church for the last time. It was horrible for me. I walked about ten steps into the building, then had to rest on the lobby chairs for 20 minutes. Then 10 more steps into the first meeting. Second meeting, same place, third meeting, 10 more steps. By now, I'm many steps away from my car. I had to stop and rest 4 times between the Relief Society room and my car! I cried it was so hard. I was in shock. I was only 34, how come walking to my car is suddenly the most difficult thing I've ever done in my life?!

So, I became a rather full-time wheelchair user. I didn't want to ---REALLY, REALLY didn't want to! It was either that or stop living. Like from Shawshank Redemption: "Get busy living, or get busy dying." I was doing the latter. The wheelchair allowed me possible access back to the world of the living. ...if I was brave enough to go there.

In July, we bought a second wheelchair, a better, lightweight, everyday chair. That's the one you see me in now. The cheaper chair is now my upstairs chair. We also bought a stairlift, for me to get up and downstairs. With this economy, we decided it was better and cheaper to buy a 2nd chair and a stairlift than it was to move to a one story house. Eventually we'll get that one story house, someday! We've also purchased three ramps, sturdy bar grips, a long-armed grabber, and other household accessibility aids. In late summer, my legs were too weak to push down the pedals in my car to drive (I could push them, but only for a few seconds, not long enough to drive). After using my forearm crutch to use my arm to push on the pedal for 3 weeks, we finally got hand controls installed in my car. Driving has never been so easy in my life!

Finally in September, I gathered the balls to go to a doctor. I guess I was too scared that he would say there's nothing wrong with me, and I should be up and walking around just fine. Or that I was a fake vying for attention and a parking permit. Especially since I do have some movement in my legs, I can stand briefly, I can usually move my legs around a bit (if I have tons of energy stored up for it), and I have full feeling in them, I just can't pull off all that is required for walking to actually get anywhere.

Also, I didn't know when to go to the doctor because I was like the frog in the pot, who notices that that the water is getting slowly warmer and warmer. But who doesn't jump out, because it's always just a little more than it was before. It was never a big event. It was just always a tad worse than last week. Like labor in childbirth, I can handle it. It only gets worse in small increments.

The doctors were able to determine that it's not my muscles, it's my nerves. It's some sort of neuromuscular disease, meaning something neurological that affects my muscles. My muscles were good, and my brain scan was clean. The closest we got to anything was my cervical MRI (which was ordered because I have mild weakness in my right hand too). I’ve seen the MRI, but I don’t have a copy of it to show you. It showed a little white line that looked like this:
http://www.uiowa.edu/~c064s01/nr083.htm

It’s kinda hard to see, on the upper part of this picture I found online, in the middle of the spinal cord, there is a vertical white line. The line, on this page, is said to represent a demyelinating disease. In fact, the case mentioned on this webpage sounds an awful lot like me.

There was also an edge artifact, basically a photography error, on the edge of my scan. They're normal and are to be ignored. My doctor, however, figured that if one part of my scan showed an artifact, then maybe all the scan was affected by artifacts. So, he said he couldn't diagnose me. He referred me to a Parkinson's doctor in San Antonio who was making appointments 4 months out. He admitted I didn't have Parkinsons, so I decided to not waste my time with that doctor; it didn't feel right. I've just been trying to survive and get on with my life since then.

About every other day from June 2008 through March 2009, I tried to walk. I seemed to be on a three or four day cycle alternating between:

Day 1) I'm perfectly fine, life is good, I can totally do this, what are you looking at?
to...

Days 2 & 4) Nah, this can't be real, surely I can get over to the other side of the room by myself, and I try, and I get up and take a few steps while holding onto furniture for dear life. I either fall after a few steps, or I make it, after which, I am completely exhausted and no longer able to move my legs at all for several hours, and then a few hours later I get that awful pain in my legs and hips that will last for the next few days. I can sprain them all in 4 steps now. I ice everything down, and vow that I will never try that again (until the cycle repeats again in a few days).

to....
Day 3) The I-Hate-Wheelchairs-Day. On this day, I hate all things wheelchair, and I try to refuse to use them. Of course, I eventually give in to the need to pee, and use the damn thing to get to the bathroom. Then I go back to bed and homeschool from there. Usually I give in around the afternoon and go downstairs to eat (thus using 2 wheelchairs and a stair lift, to my utter horror.)

to...
Day 4, The Nah, this can't possibly be real Day. See above. Then back to day 1. This approximate pattern has been repeating for 8 months.

Well, it's been 7 more months now since my last attempt with a doctor. I didn't immediately go to the next doctor I was referred to because, frankly, he didn't have an office set up yet. I had to wait for that. I almost went to another doctor in the meantime, but it really didn't feel right, strangely really didn't feel right, so I cancelled that appointment.

I think I've finally convinced myself that this is real and not going away, and not a dream. I guess I'm leaving the bright, sunny Land of Denial now. It's too bad, my inner goth was quite happy there. I know I've waited too long to see the doctors, it's one of the things that I'm bad at - going to a doctor and trying to explain a long, complicated, highly emotional story, and one that I hardly believed myself, in only a few minutes. Just believe me that I had too much going on in my life just trying to survive that I couldn't handle the added stress of finding and going to doctors. There were, of course, times when I wished someone would take me to the doctor, or that I could just be in a hospital, explain my story once, then have a bunch of tests and a diagnosis all at once, but that's not how it works.

In the past few months, Brian and I have tried to get active. We've always wanted to, but I was never physically able in my walking years. Maybe now, with enough equipment, I can be, and we can get out more. I've started finding organizations that plan sporting events for disabled people. They let us borrow their expensive equipement, such as tennis wheelchairs, and handbikes (thousands of dollars when purchased new), and I finally get to do activities again! Of course, they're mostly in Dallas, and we can't go there every weekend.

So we're looking for a used handbike, so that I can ride along while Brian runs. I'm hoping that biking will replace hiking for me, and allow me exercise and a chance to clear my mind again, like I had many years ago. I think I would be a much happier person if I could get that back! Not being able to hike is the hugest loss to me in all of this, and I hope that handbiking can make it all a little more okay.

Beginning around the end of March, last month, standing is now hard. I've been slowly declining in my abilities, almost imperceptibly at times. For example, last summer, I could walk for about 10 minutes a day. Last fall, it was more like 4 minutes a day. In December, even taking one step required enormous effort, but I could stand for 30 seconds before that became difficult. January was 20 seconds (yes, I timed it). April: now any standing at all requires enormous effort, and I feel like I may fall back down the second I stand up. I've had to learn how to do seated transfers, and much harder, the seated putting-on-of-the-pants. I still do standing transfers about half of the time, but somehow, the loss of effortless standing made this turn serious/real for me.

I saw a poster on St. David's hospital two weekends ago, advertizing a speciality neuro center. I went to their website, and saw that they provided an MRI Second Opinion service, and that's exactly what I needed! So, last week, I got my MRI scans and took them to the hospital. They are reviewing them now, and I should hear back from them sometime this week. It's possible they won't see anything, and I'll have to either beg for more tests or go on my merry way. However, I'm hoping and praying that if there is really something on my cervical MRI, that perhaps this doctor will see it. And perhaps then I could get a thoracic MRI, which would possibly show any damage that is causing my legs to be far weaker than my arm. Or, if not that, then at least this new set of doctors might be able to know where they should look to find answers for me.

The truth is I don't expect a really accurate diagnosis. If I'm lucky, I'm hoping for a category. Right now, from my previous doctor, my category is "neuromuscular disease". I'm hoping maybe we could narrow it down a little to something more specific. Who knows? The lack of urgency here is because none of these possible diagnoses will lead to anything they can do to help it get better. It would be nice to know, though, if I really am disabled; to hear someone say it, I guess. Since I still deny it to myself, but yet I have to live the life of a disabled person, which is why I'm so confused.

When it's done, and they've diagnosed as much as they can, I am going to ask for help with living: Prescriptions for medical equipment that I've been buying out of pocket. Ideas on how future pregnancies and deliveries might be different from my past ones. Referrals to counselors or group psychology so that I can talk about this with someone other than my sweet husband (who's heard way more than his share). :-)

I remember clearly, the first few times I went to church in a wheelchair, and every single person wanted an explanation. I wasn't able to give it to them, I didn't know, I guessed, plus I was heavily in shock. I'm sorry about that. It was hard, too, because they wanted a simple 2 word explanation, and then they would walk away, where I couldn't reach them. They still do that sometimes. No one sticks around for a full sentence anymore, and I can't follow them, and I can't go sit by them. Throw in the fact that I have to take sacrament at home (thanks Brian!) because I can't eat wheat, and going to church is looking more and more pointless for me.

Going to the temple is incredibly complicated, and for no good reason. It could be just fine if everyone left me alone. It's just that everyone assumes I'm a complete invalid who literally can't push her own chair, much less change her own clothes. It's very hard to go there and get any work done while trying to avoid running over all of the people lining up to "help" me who are actually in my way. I don't want to hit them, so I just have to wait till they move. And there's no room for me, I feel so unwelcomed. I actually had to sit sideways last time, facing the men's wall, instead of facing the front of the room, because there was not even enough room for my chair to face forward. Not to mention that if you can't raise your right arm up in the air, which I can only do for about 5 seconds total per day, the whole thing is pretty pointless anyway. So, I'm taking a long break from going there till I figure it all out.

I was tempted last year to just stop going to church for a while, so that I could get used to the new "me", and be comfortable with me before I could give back to others. My cup was most decidedly empty, and it was hard to go to church and try to give friendship out when I had nothing to give. I'm regretting now that I did go, because I know I've been less than social lately, and I think it would have been better if no one had to see that. I'm sorry you had to. But someday, I'll be ready to give again, that will be good.

In the mean time, even though I'm not very good at giving in general, I am ready to talk about it (finally!). So, please don't hesitate to ask me whatever you'd like to ask me.

Fear not, though, my faith is strong, as strong as ever. My testimony of the Lord Jesus Christ is flourishing. No one has ever taken away emotional pain for me like he has!

Right now, I would like to do something I've never done before. Well, actually, I'm spilling my guts here, which is nearly unprecedented too. :-) But, I'd like to ask for help. It's true, I never do that. I'm sure that learning to ask for help is one of the thousands of lessons the Lord would like me to learn throughout the rest of my life.

For those of you that are willing (and are still reading this ultra-long story), please pray for me that my doctors will be able to find out what's wrong with me. Please pray that they will be inspired to know what to focus on, and where to look, and to be able to possibly find what it means and why. Please God. It's all I ask, just tell me what went wrong in my body, and tell me that it's as real as it feels.

Thank you for praying for me. I believe in prayer, and I feel that now is the time to ask for it, and to ask my friends for help. Thank you again for your friendship and your love. I know I couldn't get through this alone!

Oh, and by the way, I'm going to learn how to knit! I just bought my first yarn and sticks today!

Alexander's New Trick & Sam Graduated 1st Grade

2009-04-18T11:34:00.007-05:00

School was great yesterday, Sam finished the very last of his first grade work! Yes, he's early, he actually finished a few weeks ago and I've been making him double go over things just to make sure, but the boy is done. Alex needs more time, but that's normal. I make the kids a certificate like this every year when they graduate, and Sam collects them. He has 4 now! (starting in home-preschool). :-) We'll start him on 2nd grade work on Monday, so that his summer break lines up with Alex's.

Alexander has been working on writing a story in school for the past 3 days. He's learning handwriting, phonics, spelling, punctuation, endurance, and most of all - story writing. It took a lot of work, but he finished it! He's completing a school requirement for this and also his last scouting requirement needed to earn his Religious Knot. So, that'll be cool!!

We had a very rainy day yesterday (yeay!! we needed it!!). Anyway, after school was over, the kids took advantage of the indoor time to learn new tricks. Alexander played with a motor, a fan, and our entire collection of multi-sized batteries, with different voltages, so see how the different one made the fan go faster or slower. He also set up magnetic switches to turn it on and off. He's way beyond me in this stuff.

Sam practiced a ton of piano work, and is about to finish his first set of piano books already. I should get you a video of him playing! The teacher says he's going much faster than she's used to seeing in kids his age. He's doing a great job.

In this video above, Alexander also created a new trick. He made a homemade whip out of a plastic stick with a rope attached to it. He learned how to turn these light and fan switches off using his whip! So cool.

Then after dinner, we watched the movie Enchanted, which my husband loves, but I've never seen before -- and I learned a lot more about just how much of a sweet romantic my husband really is. :-)

Handbiking Day in Dallas

2009-04-13T14:50:00.013-05:00

It was a beautiful day in Dallas last Saturday. We went up there for the Quad Rugby game Friday day (to watch), and to ride handbikes Saturday. This is a pic of the trail where we rode bikes, it was beautiful!!

Sam's all ready to go.

and so is Alexander!

and I have a bike too. I got to borrow this great handbike from the group! I loved it!

Here is the webpage that they posted about the event:

http://www.riseadventures.org/2009/04/12/rise-golfhand-cycle-picnic-recap/

The "family driving up from Austin" and the "paraplegic mother"

are both references to me and my family.

This was fun. At one point, we tried to set up a wheelchair-friendly tent. No able-bodies were allowed to help. Here is Steve, Jonathan and I. Mike was there too, just not in this shot.

Here's Jonathan and I trying to get that tent up.

Ooh, here's a picture of "my" bike, again. We're seriously thinking about trying to find one of these, since we can't very well travel to Dallas every weekend to borrow this one. Anyone have a used TopEnd XLT for sale? :-)

Alexander and Sam LOVE handbikes. I don't know why, but they love them more than foot-pedaled bikes.

Look! We finally got the tent up! There's a place inside with a roof and walls, but no floor, to park your chair, like a front patio. Then, you enter the second part of the tent for sleeping. Cool design. We might need one of these too! :-)

Two guys trying out access to the inside of the tent.

One last bike ride.

Whew! That was fun! I haven't gone hiking/walking/biking in 3 years due to this blessed disease, and now I finally did again!!! Yay!!!!

It's easily the thing I missed the most. Gotta do this more often!

Oh, and it's hard to see here, but the roads were lined with blue fields, just covered with bluebonnet flowers this time of year! Beautiful!

Quad Rugby in Dallas

2009-04-13T14:39:00.007-05:00

Ok, I just realized that I uploaded this pics in reverse order, sorry about that. So, we'll start with after the game...

Here, the kids got to try out the chairs and play. Sam is in the red t-shirt. That's me watching in the white t-shirt.

Sam still playing with the other kids, and one player.

Here's how the kids-o'-gimps occupied themselves during the game. They liked the video game better than the actual right-in-front-of-them game.

The game. The green shirts are the Dallas normal rugby team, ablebodied. Our team is in the black shirts.

A good collision.

Here's a great guy I was talking with, named Smiley. He was telling me that my chair is perfectly fit for me. He said you usually don't see that in someone who's only been a chair user for a year. So, it was a big compliment. :-)

Brian was sitting behind us, and took all of these great pictures.

Tennis Day!

2009-03-29T10:03:00.019-05:00

We went to San Marcos yesterday to try out wheelchair tennis. They had a big event and tournament there -- so I got to try it!

The kids played lots of games.

Here, Sam is playing Musical Chairs with the extra court wheelchairs.

The tires on the ground are the goal locations when the music stops.

I got to borrow a real-life tennis wheelchair. Here, after an hour of Brian modifying the chair because the back was too low for my level of injury (good thing we brought the tools), and two people strapping my feet in, I'm finally ready!

We also got to try out handbikes for the first time!

Looking more and more like dad every day!

Musical chairs again, Sam won the spot!

Sam on the handbike.

Brian on the good handbike
(the lower-to-the-ground ones are better.)
Sam in the background.

Brooke on the good handbike, with Brian close behind.

Brian and Brooke having fun!
.
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The tennis result was: not so much.
.
The handbike result was: oh ya, I've gotta try this again!
.
I played with the tennis training warmups for the first hour, before the matches began.
It was nice having a guy train us, basically for free. He thought I did great, but then, there was no moving around for that training. In the games, I just had no success whatsoever in actually getting to the ball. If I could've reached it, I could've hit it, since I know tennis as a standing person. But this was something I didn't know how to do.
.

So I stuck with it past the first game, hoping it would get better. I never touched the ball unless I was serving -- and when I served, we won the point! But the rest of the time, my partner was doing all the work. I just couldn't get to the ball in time.
.

The other hard part is that this is a sport that requires a good working right hand, which I don't have. My right hand and lower arm, well, they work better than my legs, but they are definitely less talented than my left hand and arm, which are practically normal. There's lots I can't do with my right hand. My hand controls in my car were actually installed backwards because most people are right handed, like me, but my left hand can do more, like steer. I can't steer my car with my right hand.
.
I can't even push my wheelchair normally with my right hand, I have to grab the whole tire, and palm it, like a quadriplegic would. I've put some rubber tape on my right handrim which helps with grip a little.
.

But when you add in that in tennis you have to hold a racquet and push your chair around with the same hand, with a hand that I couldn't even push the chair around with before, it was too much for the hand. I'm glad that one guy yesterday told us that wheelchair tennis is the most difficult wheelchair sport there is, because of the right hand requirements. This ended up being comforting news by the end of the day.
.

By the middle of the second game, two things overwhelmed me, and I got out of the game. One, the realization that tennis is lost to me. Over the past year, some things have been lost, some things gained, many things remain, and some things are on a list to find out what their status is. Tennis was on the maybe list, which is one reason we went to play yesterday. --Also we went to meet other wheelers, which I've never done since I joined their ranks. And after almost a year in a wheelchair, it's nice to know you're not alone.
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Brian and I think the tennis was actually made worse because I already knew how to play. So that information confuses me when I'm strapped to a chair, I can't play my instincts, my experience. My upper body kept moving normally, swinging, moving, but without the lower body taking me where I needed to go, I kept missing what would have been very easy shots for me before.
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It's like my dad, who taught himself how to type, but chose different home keys, sdfg. Then, when his school wanted to teach him the asdf home keys, he soon realized that he needed to drop out of the class or else he would lose all ability to type.
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The second thing that overwhelmed me was my now injured right hand. I was asking way too much of it, and by now it was screaming at me. Later that night, there was lots of ice, ice water, not using the hand, and tylenol. The hand was incredibly swollen. It's just not a hand that I can use for holding a racquet and pushing a chair at the same time.
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It's probably a good thing though, like an excuse for me, since I'm pretty sure I don't want to completely relearn tennis, which is what I would have to do. I'll still play tennis informally with my husband and kids, just for fun, but just for fun, with no expectations. :-)
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My right hand and arm also prevents me from swimming (can't swim for more than a few minutes with only one good working limb) and basketball (can't shoot up in the air). Basketball is no loss, I never liked the sport anyway. I'll just add swimming and tennis to the list of things I got good at as a kid, that will remain in the past, like roller skating and soccer. I'm so glad I did those things, I don't miss them now. I probably wouldn't play them anymore anyway. I'm fulfilled in those areas :-)
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I used to think, a long time ago, that a person who can't move everything must still know in their head how to do lots of stuff. So, those things are still real, even if he can't show them to you, he really does know how to do them. I'm glad I had that thought, or that it was given to me, because now I am comforted, I'm fine knowing that I can play real tennis, roller skate, swim, shoot a basketball, and play soccer. I won't demonstrate them right now, but at least I know how to do them ! :-)
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So, now, my dad can still type, and I'm going to leave tennis in the past. I have a list of other sports and outdoor adventures still to try, we'll go down the whole list and make that my spaghetti on the wall: we'll see what sticks!

.

New Cell Phone

2009-03-13T17:11:00.002-05:00

I got a new phone. My old one finally died, yay!! I know it's funny to be happy when something dies, but when it's a 2.5 year old bulky cell phone with bad reception, it's a happy time because you get to replace it with the newest technology, which doesn't cost hardly anything because our previous 2 year contract has been fulfilled.

Above is a stock photo, so not mine, but this looks exactly like mine. I've finally been able to combine my Palm organizer with my phone. Now I'll really kick butt in the keeping track of things department!

So, feel free to call, text, email, or IM me anytime. I can get it all on my phone. :-) It also has a Facebook program, so I can check that on my phone. Technology!! :-)

Spring Gardening and Flowers

2009-03-13T17:06:00.006-05:00

We've also been doing a lot of spring gardening. I planted some great flowers in our front yard, as seen in the pictures above. The purple and pink colors are so great!!

Some beautiful pink, hot pink, and yellow flowers. Amazing shape and colors!
Purple petunias in the front yard. There are three groupings of them, here is one of those groupings.

These are the kids' flowers and herbs. They chose them (so it's an eclectic collection).

LDS Site on Disabilities / Getting Out There

2009-03-13T16:22:00.012-05:00

Brian found this site about disabilties from our church. This page that I linked lists Ways to Help. .
I like what they said here:
"People with mobility and movement impairments may find it difficult to participate when facing social and physical barriers. Quite often they are individuals of courage and independence who have a desire to contribute to the fullest level of their ability."
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This is my favorite:
"It is okay to ask if someone would like help, but do not assist a person without his or her permission. Consider safety and liability issues. "
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Just yesterday, I had one person grab my groceries from behind me so that she could "help", and then when I got to my car, another lady grabbed my car door to open it for me. Neither of whom spoke to me first. I didn't even see them until after they had touched my stuff. This happens about every other day! I know people are trying to be nice, but at some point, it's just plain inappropriate to touch someone else's purchased groceries and car without their permission. If I had a nickel for every time....

No wait, I think this one is my favorite too!:

"Show compassion, sensitivity, and sincerity by respecting the individual’s wishes. Maintain a balance between helping and allowing the individual to grow by providing for him or herself."

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That’s been my argument all along, that I need to learn to do things for myself. People are always trying to help, and I know they’re trying to be nice, I really do, but I also really need to learn this.
.

March 1st was my one year anniversary of when my physical abilities began declining incredibly quickly. With that anniversary, I realized that I’ve completed my basic lessons on how to do things. I can do pretty much anything I want. I use a grabber for high things, can cook, clean, homeschool, do laundry, and grocery shop. I can also drive a car, go up and down ramps, go over grass and rocks, pop a wheelie, and my newest trick, going in and out of a stepped up doorway.
I can go up the doorway by pulling on the door frame, which I why I can’t use that trick on any step, I have to pull on something. But, I can go down any one step now. From a single outdoor step, to a doorway threshold plus step combined. Anything up to 5 inches high, I have learned to drop from. I can’t just go straight down because my footrest will get caught on the ground.

What you do is balance on the back two wheels, which I’m great at now, the go forward to the edge of the step, then in one move – with no hesitation – push forward over the threshold, while at the same time bringing your front wheels down (just like landing a plane) to meet the ground at the same time or immediately after your back wheels hit down on the lower step. It has to be in this order. If the front goes down first, you’ll hit footrest instead of wheels. If the back wheels go down alone, you have to be really talented to keep from falling backwards to the ground. So, it’s like falling, and timing the fall to let the wheels land at the proper times in relation to each other. At first it was very scary, falling and being in mid-air for a moment, with no control. But I’ve been practicing for a month now, and now that I’ve got it down, it’s fun to do!

Anyway, the point of all this is that I think I'm ready to allow more help when people want so much to give it. I just needed to know that I could do it first, and now I know. So, I'll work on this. Of course, I've said no to help 7 out of the 8 times it's been offered in the past week since I made this decision, so clearly I have more work to do on it.

I've also hit a phase in my life where I'm starting to understand why there's a prevalence of people on wheels who do a lot of sports and activities. I need those things too. I need to seriously get out there and have fun. Fear be damned. Murderball (wheelchair rugby) is looking pretty good right now. I think that would be a lot of fun. I've been searching the ends of the earth and finally found some groups, mostly in Dallas however, who have activities I can go to. They have handbikes I can borrow, they have boating trips, and rugby. On our own, our family also wants to try kayaking and archery.

So, we're using the chair as a motivator to get ourselves to finally get out there and do the activities we've been dreaming about for years but were too unmotivated to schedule. My stronger desire to actually do something physical, combined with the fact that I live with 3 boys who thrive on physical activity has left us no choice -- we've got to go have some fun!! :-)

By the way, I love this guy and this chair he made (see above picture): http://www.axessoutdoors.com/

Facebook / John

2009-03-13T14:53:00.005-05:00

Hey there friends. I've been behind in blogging because I discovered Facebook. Here's my profile. My mom got me on a while ago. She started a group for our family to keep in touch. That is working well.

Then, a week and a half ago, I found out that you can find old friends from High School on there, as well as people I know now! My whole world has expanded. It's so great getting in touch with all of my friends. I can combine the worlds of my past and my present. I love it!

One friend I tried to get a hold of but then found out why I couldn't find him. I found out last week that my good friend John Holt died last October. He was only 53! It was quite a shock to me, my old friends, and even some people at "I went to Mt. View a long time ago" group. It's a good thing I didn't hear about it then, I couldn't have handled it with all the other stuff I had going on in my life. But now, in March, I was ready. I don't know how his wife is doing, but I know she's a strong lady, and I wish her all the best.

John was originally our English teacher. Brian and I were in his class together in 10th grade, 1989-90. After high school though, he became our good friend. We and some other friends shared our poetry and writings with each other often. He and his great wife Suzellen were some of the few, if not the only non-family members who were at our wedding. He was a great friend and a great motivator. He always saw a lot more potential in me than I did. And now, I'm starting to wonder if he was right. He was one of those guys who is very smart, is always nice, and is always genuinely trying to help others. You don't meet many like that. He and his wife also loved horses. They owned many and his wife teaches centered riding. He had moved on to become a middle school principal in his last years, and from what I hear, he was excellent at it.

So that's a hard thing, to know that someone you care about isn't here anymore. Very complicated, lots of emotions with that. I wish him well on the other side, and look forward to meeting him again in person someday.

Dance Party -- my house -- be there!

2009-03-13T14:48:00.005-05:00

We've been holding our dance party more often. We're trying to do it every week.

Dance Party is a thing we do on Friday nights. We clear out the furniture from the middle of the living room, turn out the lights, get out some blinking colored lights and flashlights, and listen to the dance music that's on the radio. Usually we just rotate through the channels and can get a pretty good mix from 70's & 80's through to current alternative rock. If we ever run out of good music there, we can hook up Brian's computer to the speakers and listen to MP3s. It's a lot of fun!

The kids dance, and also make forts that they play in, and do tricks with the flashlights on the ceiling. Brian and I like the occasional slow dance too. :-) We all just dance and jam like there's no tomorrow.

It's so fun that everytime we do it, I wish I would've invited some friends to come over and dance with us. So, if you want to come over and dance with us, great! Let me know and I'll tell you when our next one is!! I figure we could fit at least 2 more families with kids in our living room/kitchen dance floor. :-)

It's great. Like dancing as a teenager again, but with your husband and kids, which is even better!!

Krysten's blog

2009-03-13T14:42:00.007-05:00

My nephew Jacob

My newphew Jordan

Krysten, my sister, started a blog! Yay! It's at http://livedeliberately.net/. You're so cool Krys. I love the title, I wanna be like you! I really look foward to following along and seeing how she's doing. Love ya Sis!

Marley went home!

2009-03-13T10:51:00.000-05:00

Kim, my sister, holding baby Marley (she's small -- get your magnifying glass out!), her husband Michael, and their son Sebastian.

My niece is home! I forgot to mention that earlier. She was allowed to go home from the NICU on February 27th, when she was 10 days old, at 3 pounds, 10 ounces!!! They had lots of car seat problems, since kids are almost never allowed to leave the NICU that small. She’s doing so great at home. She’s already up to 5 pounds now! That’s my niece! She and my sister are doing great, I’m so proud of them!! Love ya Kim!

Barenaked Ladies Breaks Up

2009-02-28T17:56:00.007-06:00

Steven Page explains why he left Barenaked Ladies

Ok, well, I've never had a favorite band before, so I've never had a favorite band of mine change this much. Steven Page is leaving BNL. He's the one with the glasses, on the far left in the picture above. He's the great singer.

The rest of the band is staying together. I'm going to stick with the band, instead of Steve. I mean, yes, the man can sing! But Ed and Kevin and Jim write all the good songs. So when it comes down to it, that's what matters.

The real hard part is that having two lead singers/songwriters is part of what made the band great. Like the Beatles. However, that much talent and ego probably can't stay together too long.

I never got to see all of them in concert personally, and I've been waiting two years for that chance. But I guess I'll still see most of them in concert when they come by next year.

Pictures of Marley and the Boys

2009-02-23T13:11:00.009-06:00

Marley lost a few ounces after birth, which is perfectly normal. Now it looks like she's gaining some weight again! She's up to 3 pounds, 11 ounces!

Close up of Marley. She looks more like her dad than her brother does. With mom's lips.

Here's a great picture of Marley with her mom, my sister, Kim. You can tell that Marley is tiny. They are both so beautiful!

Last Friday we went to the Nature and Science center for a Cub Scout achievement. The achievement was listed as "go to a museum with your family", so we thought, why not have some fun as well?

We spent a lot of time inside looking at and playing with the exhibits, then spent even more time outside playing in the "Dino Pit".

My little archeologists! (You can see the fake dinosaur skeleton backbone in the sand behind Alexander.)

Alexander has a new hairstyle / haircut. Now the front is spiked straight up! He looks so mature. I like it.

My niece is born!

2009-02-17T23:14:00.001-06:00

Baby Marley is here! My only niece. She is perfectly healthy!!

February 17, 2009. 6 weeks early.

3 pounds, 14 ounces. 16 3/4" long 9/10 apgar

no wires or tubes at all. no oxygen.
breathing completely on her own. very healthy, especially for such a small baby.

they say if she eats well, they can release her from the NICU in 24 hours. this is amazing, we thought she'd be in there a month.

Kim did a great job! She had a pretty serious c-section, and is in a lot of pain and stress right now. Hopefully she will sleep well tonight.

Marley has dark brown hair, blue eyes, round face, and very big lips. She is beautiful!

The Last Hike

2009-02-16T09:05:00.009-06:00

I guess the dry spell is over. I've finally written something again. A poem, no less. I haven't written a poem in over 10 years. I was once quite prolific as a teenager, but nothing lately. Then, last night, I was a little restless, and before I knew it half of these lines were in my head. So, Brian, sweet man that he is, got up out of bed to get pen and paper for me so I could write it down. :-)

The Last Hike

To half of my body,
You know who you are
Where have you gone,
And have you gone far?

We used to go hiking
To many distant places
Now you’ve left me alone
With all the staring faces

Perhaps you’ve gone off
To the old rocky switchbacks
But you forgot me this time
And now you’re not coming back

How will I do this,
Living without you?
This is not what I had planned
I don’t want to see this through

But no one asked what I wanted,
Did they?
No one warned of what was to come
Or told me it would be okay

The hikes are over now
And the days, they will not end
If only I could find the strength
To push these wheels past that bend

I must push on, I must push up
That is the way it will be
Because now, only when I use the wheels
Can I truly be free.

Brooke Alayna Hack, 2/15/09

Box Turtle on Wheels

2009-02-13T09:39:00.004-06:00

What do you get when you combine my mode of transportation with my favorite animal?.....

Article From Boing Boing:

"Little Bit, a young Eastern Box Turtle was hit by a car in September of 2000. Her shell was crushed and she was left partially paralyzed. There was no way she would ever be released to the wild as happens with most successful rehabs. I repaired her shell using velcro strips epoxied to anchor points on her carapace. After some weeks Little Bit seemed to have made a full recovery except for the use of her hind legs. So some wheels seemed to be the way to go. Some lightweight model airplane wheels on a wire frame did the trick. The removable wheels were secured by a velcro strip epoxied to her plastron. The velcro strips on the carapace were removed after four months. She was eating, drinking, and exploring all the rooms of my house. Eventually she was able to move around outside as well. "

Brian on the Piano

2009-02-05T16:03:00.007-06:00

Brian is very creative. He doesn't even have any formal training in music or piano, but that doesn't stop him from using the piano to get his creative juices flowing. I really admire how he just tries, and creates new music.

Here's a little clip I took of him fiddling around the other day. He's so cute! :-)

I had forgotten...

2009-02-05T11:47:00.005-06:00

It's been such a long past year, that I had forgotten what I was doing a year ago. Two days and one year ago, I was giving the presentation on the book that I wrote January 2008. It seems like a whole different lifetime now. I feel like I haven't achieved anything since then. I did really well writing that book, I'm glad I did it. I miss that sense of achievement.

I've been looking over my old articles. Here's one that I've linked to on my site that I liked: Kids' Moods. It's a good one to reread. It's about helping kids be in a good mood by taking good care of their bodies. It works so well with my son Sam!

Glenn Beck on Socialism and Communism

2009-02-05T10:53:00.004-06:00

Great Video that Drudge Report listed on Glenn Beck. He hit the hammer directly on the nail this time!

Of course, you'll need to scroll down a little and pause the music first.

My Birthday, Plants, and Flowers

2009-01-24T16:43:00.006-06:00

I tried bulbs this year, for the first time. These are paperwhites. I think they turned out pretty well.

It's hard to tell here, but the boys each bought and planted their own grape vines here. Sam on the left, Alex on the right. Right now, they're just dormant sticks, but we hope for more in the springtime! :-)

Here are some of the indoor plants that we've started.

Also, tomorrow is my 35th birthday! So, that's fun. I bought myself a bottle of Fiji water, a little container of bath salts, and a rose that was yellow with pink tips. :-)

Playing in the Backyard

2009-01-24T15:13:00.012-06:00

These are just some pictures from a day in December when we were playing in the backyard. I think it was on Sam's birthday, actually. The falling leaves were very pretty. They're all gone now, but the pictures remain. There's a video at the bottom here of a game the kids made up involving a swingset and a hula hoop!

Beautiful Things

2009-01-11T21:44:00.009-06:00

Here are some screen caps of views from me flying on Flight Simulator. I decided I could start sharing those with you from time to time, for fun. :-)

Somewhere over a beautiful ocean at sunset.

Philipines

South Padre Island

The Leaning Tower of Pisa, Italy

Take off, somewhere.

Ok, so some of these are old, and I don't remember where they were taken. It's a fun program, though, has the whole world programmed in there!

Next time on Beautiful Things... my new hobby, container gardening (gardening with pots). :-)

Music by Joss Whedon

2009-01-08T22:17:00.007-06:00

Recently I discovered that even things I saw a long time ago have been placed on You Tube. We had a wonderful time in December reliving the episode of Buffy the Vampire Slayer, the musical. Here's the first song from that episode.

And here's arguably the best song of the episode... Enjoy!

Anyway, the point of this is that I really like Joss Whedon's songwriting, so I looked to see if he has written any more. Turns out he wrote an internet-only show/musical called Dr. Horrible's Sing-Along Blog. It's great. It's about an hour long, and it's really funny. My boys and I enjoyed it. Here's the promo, which is really funny...

Here's part one. There are six segments: 3 Acts, 2 Parts each. (Just thought I'd tell you so you don't waste time like I did looking for Act 1, Part 3.) :-)

So, enjoy the show, and see whether or not he gets into the Evil League of Evil. :-)

House Modifications & 14th Anniversary

2009-01-06T18:32:00.011-06:00

I know, I'm really behind in my blogging. Sorry about that. I hope to do better now that it's the new year. It's a nice relief now that the holidays are over, so much more free time. :-) Also, I'd like to take a moment to say:

HAPPY ANNIVERSARY TO BRIAN AND ME!! 14 YEARS!!! YAY!!!!

Ok, that was fun. I'm hoping this will be a great year, with a great anniversary. I'm happy that we are starting the next year of our marriage. :-)

Below, I have some pictures to show you of modifications we made on the house over the Thanksgiving break....

This is the new ramp for the back door, to the back patio. It's also a portable, foldable, ramp, so it can be taken to other places when needed to help me get into some one-step houses and such. It's really heavy though, so Brian has to carry it for me. I love that we have this ramp now, because I can go in the backyard. I didn't go in the backyard, other than rare instances where I walked one step to a chair on the patio, at all since last May, so I really missed it! I feel so free being able to go back there!

This is the doorway to the master bathroom. It was 24" wide, but we hired a carpenter who took it out, cut the wall, installed more framing and bracing, and installed a new 32" door! It's great. For the past 6 months, I was transferring at this doorway to a rolling office chair that was in the bathroom. Those extra transfers were really wearing me out. Now I'm free to go in and out of my bathroom with ease! You can see the other doorway in the distance, that's the doorway to our closet. It's 24" wide, the same size that this door used to be. It's a huge difference.

The new door, closed. It's not painted yet (it came primed), so we'll do that someday.

Downstairs, we added a landing and a ramp. This step is 7" tall, so we got a 7' ramp, which is what is needed for that height. The landing is a wood box that was custom made by Brian and the carpenter for that spot. Pedestrians can walk straight off the edge of the box, while wheelers can turn and go down the ramp. I must've been upstairs when this pic was taken, since you can see my downstairs wheelchair, Zoe, on the left there.

The box. We want to get some matching carpet to staple to it, but it's too small for a carpet remnant, no one will sell us a piece this small. They told us to go through their trash bin, which I can't do and Brian hasn't gotten around to yet. So, last week I painted it the same color as the surrounding walls. Temporary (possibly), but at least it doesn't look like we're in construction anymore. :-)

Here's my view, about to go down the living room ramp.

Family Pictures

2008-12-07T22:00:00.013-06:00

For the first time, I mean, EVER, we took pictures of our whole family! We finally got down and found the tripod, and set the camera to a 10-second delay, and took advantage of the photogenic trees in our backyard, and took a picture! I'm trying to make it a new family tradition. We did it on Thanksgiving Day, right before the big meal. I'm hoping that timing will remind us to do it again next year! :-)

I call this one: The Evil Power Twins.

Brooke and her boys. I love this one!

The crazy picture. :-)

Brothers.

Sky Triangle

2008-12-03T10:18:00.002-06:00

This is the Astrophysics Lab, after all, isn't it? I probably should list some sort of astronomical phonenoma every once in a while. Thanks to my computer program, Stellarium, which is available free online, I found out that two nights ago was a great night to take this picture.

This is a crescent moon, of course, with Venus (the brighter one), and Jupiter (more dim). Beautiful, isn't it? :-) We had fun taking pictures out there. I should do that more often!

Miniature Golfing

2008-10-23T22:15:00.008-05:00

About two weeks ago, the kids talked us into going miniature golfing. It turned out to be a great idea, and we had a lot of fun! The only bad part about it was that we had to drive an hour to get to the nearest mini golf place that was wheelchair accessible. The close golf place is up on a high hill, with lots of steps, and no ramps, so there's literally no way to get to it. But, the good news is that now we have a mini golf place we can go to. It was lots of fun. There's even a movie of it below!

Alexander's 9th Birthday Party!

2008-10-23T22:04:00.007-05:00

Alexander is a Bear in Cub Scouts now!

I didn't know Yoga was Inaccessible.

2008-10-18T13:15:00.007-05:00

I wish there were more greedy capitalists. 'Greedy capitalists' is a phrase my Dad says. I thought it was a bad thing when I first heard it, when I was young, but he taught me that it means a person who wants to work hard to earn more money. That's a very good thing. He used to have his own store, and if someone wanted to use his business a few minutes after he closed, but he was still there, he would open the doors, and stay a while longer. That's how you make more money. This was a great lesson.

I just took my first offical yoga class. I've been doing it at home for 11 years. I was inspired to keep doing yoga even with my new limitations by a guy I heard of in Minnesota whose legs are paralyzed and who teaches yoga. I've been doing it at home, what I call "floor yoga". And I'm hobby-shopping right now, so I thought a real class would be fun. I wasn't too concerned about it. I can get on the floor, and do lots of things, just not the standing stuff, or the raising your legs stuff. I figured I would just do my best, do what I can..

I went on Monday to check out the place. It was nice. I asked the lady who showed me around if I could just stay on the floor for the standing poses, and just do what I can do and not do what I can't. She said it was fine.

I picked Yoga Yoga's easiest class, called "Gentle". The class flyer descrbes the Gentle class by saying "These classes support people with limitations." I know I can do harder yoga than "gentle", but I went to that class anyway, in attempt to follow the ways of the yoga studio.

I was late. I wasn't really late, but I was made to be late. There are only two disabled parking spaces near the studio, with a reserved space in between them. Look at disabled spaces next time you're out, there are reserved spaces between the spots, with yellow stripes, some on the left and some on the right of the parking spot. Since I am on the drivers' side, the left, I need extra space on the left to assemble my wheelchair. I lift it over my head in the car from the passenger seat to the ground out the left door. Then I have to put the wheels and cushion back on it to assemble it, and then turn it around into position for me to get in it from the drivers' chair. Anyway, the parking space with the left space was taken, so I went to the other one, and attempted to assemble my wheelchair, but it was physically impossible. It was too close to the next car on my left. I had to lift the chair from the pavement up over my head, while sitting in the drivers' seat, and I still didn't have enough room to turn it around, it was stuck. By now my arms are killing me, I'm sweating like crazy, and five people are resting at the sidewalk in front of me not caring at all. Then, a lady who can walk without visible ailment comes to the car on my right, in what I'd like to call "my parking spot". So, I lift the chair high in the air again, mostly with just my left hand, to disassemble it to put it back in my car, so I can move over one space. Assuming it was physically possible for me to get my chair unstuck between those two cars, and that wasn't looking promising, I also had the high risk, since I was parked pretty much on the yellow line, that a new car would be parked even closer when I returned to my car, thus completely preventing me from accessing my car. I had to take the extra time and effort to move. Unfortunately, the other lady took her sweet time to get out of the parking space. By the time she did, my class had started. Once she moved, I quickly moved to the other space, and unloaded my chair, again.

I "ran" into the yoga place, handed them my first-day form, then went to the class. I was 4 minutes late. I felt awful about it, but it really wasn't my fault. I would've been at least 5 minutes early if I could've used any parking space like everyone else can. Anyway, this probably started me out on the wrong foot with the yoga instructor. One lady and her mat were blocking the door, so she and a few others had to get up and pick up their mats in order for me to get to a space in the back of the room. The instructor asked if I wanted to use a raised platform space at the side of the room, it was about 3 feet off the ground, higher than I was seated in my chair. Unfortunately, the parking experience made my "kindness" factor a little low, so I just answered logically instead of super-politely. I said, "how would I get up there?"

Class resumed, and we did some floor things. My left arm was killing me from all the overhead chair lifting, so I kept trying to sneak in some arm stretches. It was unfortunate that I couldn't focus on what I was doing in the class, like the others there, because I had just injured my arm while trying to do something they take for granted: parking and getting out of my car.

When it came time for the first pose I couldn't do, a forward bending pose on all fours, I just sat with crossed legs and bent forward. I was quite proud of myself, that I was adapting and doing well. The instructor came over to me and said you have to do this pose in order to stretch your lower back. I said, yes, that's why I'm leaning forward like this. Then, he tried to talk me into doing it correctly again, up on all fours, and I just looked at him, surprised. I said, "am I making you uncomfortable?" He answered no, but it was clear that he wasn't okay with me not obeying his every word.

The class continuted. It was hard, because I had to work a lot harder than everyone else to do similar things, but I worked hard, and I got some good stretching and exercising done. I felt good about it. Though, I did feel like it was kind of a waste of my time, and that I should just do yoga at home like I'd been doing for years, because some things they do I just can't do, and are a waste of my time. Likewise, because of my leg spasms, and because my arms are getting so strong, I needed extra work for those issues. I should just do it my way.

At the end of the class, I hadn't yet decided if I would continue coming or not. I thought I wouldn't burn any bridges, and I would ask the instructor what might make him more comfortable about me being in the class. I just asked, "are you okay with me coming to your class and just doing what I can? I did my best, I'm just not physically able to do some poses." (and I was expecting that the wheelchair was a big tip-off to him) I continued , "I spoke with a lady about this on Monday and she said it would be fine." He said something to the effect that no, it's not okay to not do every pose. Then he said "you should just keep doing yoga at home."

That was a shock. I went to the front, and paid for the class. The great lady, the same one I spoke with on Monday, offerred to give me a free class, but I don't like to be in debt, so I paid anyway. She said "ah, first class." I said "last class," and I told her about it. She said she would talk to the management and call me back. I told her that I specifically went to that class because it was for "people with limitations." I also said that this was a business, and I figured they'd rather take my money, than require that I do every pose, even when I'm physically unable.

I was quite surprised by all of this. Why would they care what I did, as long as I did my best? I've heard it said that the disabled are actually the largest minority group in the country, from a population point of view, and I never thought much of it. But, I think, today I was discriminated against, and for no good reason.

At least I won't let it get me down. I just wanted to write about it, now I feel better, having recalled the story. I can take care of myself, do my own yoga, and keep my money. I'll be fine. I did ask the nice lady, however, to remove the phrase "These classes support people with limitations" from their paperwork. I told her I want other disabled people to know that they're not welcome in that yoga studio before they take their first class.

Picture Tag

2008-10-18T13:12:00.003-05:00

Anna tagged me.

Here's my 4th picture in my 4th folder...

This is a newborn Alexander, he's about 5 days old here. He just had his 9th birthday a few days ago, so this picture is almost EXACTLY 9 years old. Cool!

God Bless the USA

2008-10-08T11:25:00.002-05:00

We were teaching the kids about our great country, and the freedom that makes it great. We also talked about the men who created the country and those in the military who protect our country and its freedoms. While doing that, I introduced the kids to this song, which is a great song honoring the troops and the freedoms of our country. Here, I thought I would share it with you as well. :-)

Done with Doctors. :-)

2008-09-25T21:45:00.006-05:00

Well, I think I'm finally finished with doctors. We've been seeing a very good Neurologist. Over the past month, I've been going to get even more tests done. I've had 2 MRIs, an EMG test, blood tests, reflex tests, and we've transferred our doctor all the records from other doctors I have seen, including the Endocrinologist I saw last year. Unfortunately, after all of the testing, the Neurologist gave us the same answer that the Endocrinologist did last year... that there's something wrong with me, but they're not exactly sure what.

When I last wrote on this topic, I had old information, and now I have new. At the time, I told you that I had cerebral palsy. I, indeed, had been told that I did, but that was a long time ago. However, doctors I've been seeing these past few months have now ruled out cerebral palsy. I guess it was easier to see what I have/don't have now that the symptoms are worse. My current neurologist says that it is some sort of neuromuscular disease, though he doesn't know exactly which one. My muscles are fine, but they have found atrophy in my spinal cord, which explains the loss of movement. I still have almost complete sensation in my legs and torso, so that is great. This is because my spinal cord damage is on the inside of the tract, where the nerves go down to the legs, whereas the outside of the tract, where the nerves send sensation up to the brain, is mostly unaffected.

It could be Hereditary Spastic Paraplegia, which fits my symptoms perfectly, or if not, it's something similar to it. Our doctor has told us that there are cases like mine in which you can find what's going wrong, you just can't find what caused it in the first place. He says that happens a lot in neurology. I guess it's a complicated field of study, with nerves being so small and all. :-)

As for a prognosis, I'm expected to stay the same. It's possible that it could get worse in a decade or two; we just don't know until it happens. At least I won't get any worse for a while. That's fine with me. Staying the same is better than the quick changes I went through at the beginning of the year. I'm so happy to just stay where I am, so I'm glad that's what we were told to expect. So, that's it.

I'm glad that Brian and I have adapted to our life. It looks like there isn't any sort of treatment or medicine available for me, even if I was completely diagnosed. Nothing that could help me walk better. The doctor did offer botox shots to help with the muscle spasms in my legs, if I am interested. But I'm really keeping that controlled with lots of yoga, but there's nothing that can be done about the too-weak muscles.

That's the story. I wanted to let you all know what we had learned. Oh, and by the way, I finally got around to getting a disabled parking permit. Yay! That's been really nice! It's nice not living in fear that someone will park too close to the driver's side of my car and I won't have room to roll up to the door and disassemble my wheelchair. Now I feel much more taken care of.

Last Sunday, at church, all of the disabled spots were taken, so I parked far away in the back, and I parked in the middle of two parking spots, so that I would have the extra room I need on the driver's side of the car. I hoped no one would mind, but I also hoped that my disabled plates and the full disabled parking section gave me the permission to take up two spots. No one complained, so I guess it was okay. :-)

We got handicapped plates put on my car, and there's a rear-view-mirror placard we can use when I'm in someone else's car. About two months ago we had hand controls installed in my van, which are wonderful. Let's see, what else... all of the plates and cups have been moved lower in the kitchen, the boys are getting good at doing all of their new chores, we have a stair lift chair and a second wheelchair for upstairs, and a ramp to get down to the garage which is one step down.

I've learned how to open any door and get through it by myself. And I got some wide and cushiony tires on the front of my wheelchair, so now I can go over dirt, grass, and occasional rocks just fine. So, life is all settled once again. I'm so glad that this crazy summer is over.

Great Cafe Press Pick

2008-09-04T13:38:00.004-05:00

I can't seem to get the image to show up here, but this link takes you to my new favorite slogan:

"I'm voting for Sarah ... and that guy she's running with!

McCain - Palin '08"

http://buttons.cafepress.com/item/225quot-button/300241759

Sun Makes History: First Spotless Month in a Century

2008-09-02T21:09:00.001-05:00

The following article is copied from dailytech.com from this link:

http://www.dailytech.com/Sun+Makes+History+First+Spotless+Month+in+a+Century/article12823.htm

Drop in solar activity has potential effect for climate on earth.

The sun has reached a milestone not seen for nearly 100 years: an entire month has passed without a single visible sunspot being noted.

The event is significant as many climatologists now believe solar magnetic activity – which determines the number of sunspots -- is an influencing factor for climate on earth.
According to data from Mount Wilson Observatory, UCLA, more than an entire month has passed without a spot. The last time such an event occurred was June of 1913. Sunspot data has been collected since 1749.

When the sun is active, it's not uncommon to see sunspot numbers of 100 or more in a single month. Every 11 years, activity slows, and numbers briefly drop to near-zero. Normally sunspots return very quickly, as a new cycle begins.

But this year -- which corresponds to the start of Solar Cycle 24 -- has been extraordinarily long and quiet, with the first seven months averaging a sunspot number of only 3. August followed with none at all. The astonishing rapid drop of the past year has defied predictions, and caught nearly all astronomers by surprise.

In 2005, a pair of astronomers from the National Solar Observatory (NSO) in Tucson attempted to publish a paper in the journal Science. The pair looked at minute spectroscopic and magnetic changes in the sun. By extrapolating forward, they reached the startling result that, within 10 years, sunspots would vanish entirely. At the time, the sun was very active. Most of their peers laughed at what they considered an unsubstantiated conclusion. The journal ultimately rejected the paper as being too controversial.

The paper's lead author, William Livingston, tells DailyTech that, while the refusal may have been justified at the time, recent data fits his theory well. He says he will be "secretly pleased" if his predictions come to pass.

But will the rest of us? In the past 1000 years, three previous such events -- the Dalton, Maunder, and Spörer Minimums, have all led to rapid cooling. One was large enough to be called a "mini ice age". For a society dependent on agriculture, cold is more damaging than heat. The growing season shortens, yields drop, and the occurrence of crop-destroying frosts increases.
Meteorologist Anthony Watts, who runs a climate data auditing site, tells DailyTech the sunspot numbers are another indication the "sun's dynamo" is idling. According to Watts, the effect of sunspots on TSI (total solar irradiance) is negligible, but the reduction in the solar magnetosphere affects cloud formation here on Earth, which in turn modulates climate.
This theory was originally proposed by physicist Henrik Svensmark, who has published a number of scientific papers on the subject. Last year Svensmark's "SKY" experiment claimed to have proven that galactic cosmic rays -- which the sun's magnetic field partially shields the Earth from -- increase the formation of molecular clusters that promote cloud growth. Svensmark, who recently published a book on the theory, says the relationship is a larger factor in climate change than greenhouse gases.
Solar physicist Ilya Usoskin of the University of Oulu, Finland, tells DailyTech the correlation between cosmic rays and terrestrial cloud cover is more complex than "more rays equals more clouds". Usoskin, who notes the sun has been more active since 1940 than at any point in the past 11 centuries, says the effects are most important at certain latitudes and altitudes which control climate. He says the relationship needs more study before we can understand it fully.
Other researchers have proposed solar effects on other terrestrial processes besides cloud formation. The sunspot cycle has strong effects on irradiance in certain wavelengths such as the far ultraviolet, which affects ozone production. Natural production of isotopes such as C-14 is also tied to solar activity. The overall effects on climate are still poorly understood.
What is incontrovertible, though, is that ice ages have occurred before. And no scientist, even the most skeptical, is prepared to say it won't happen again. Article Update, Sep 1 2008. After this story was published, the NOAA reversed their previous decision on a tiny speck seen Aug 21, which gives their version of the August data a half-point. Other observation centers such as Mount Wilson Observatory are still reporting a spotless month. So depending on which center you believe, August was a record for either a full century, or only 50 years.

Why is the veloway handicapped accessible?

2008-08-23T21:00:00.003-05:00

Below is a letter that I just wrote and submitted to the City of Austin. There is a wonderful 3 mile paved trail through nature on my side of town. I want to use it to exercise and get out like I used to when I hiked a lot. It is only for bikers and roller bladers. Originally, it was just bikers, the roller bladers were given permission about 15 years ago. Anyway, to be brief, I think I'm a lot more like a bike than a roller blader is.

Here is the official rule from the city's website: http://www.ci.austin.tx.us/bicycle/veloway_info.htm

"This is a recreational bicycle and roller blade track. All other uses, such as foot traffic or hiking are prohibited. "

Sounds to me like wheelchair use is just fine. But I called the city and they said no. Time to fight!

Here's my letter .....

Why is the veloway handicapped accessible?

It is listed as such on this site: http://www.homeandabroad.com/viewSiteDetails.ha?mainInfoId=170527

I have recently become disabled and wheelchair bound, and I would like to use the veloway for exercise and to train for our city’s many races. I used to love hiking and my heart is breaking at not being able to hike anymore. All of the trails in Austin are very rocky, and I need a nice paved surface for my "hiking". I called the city of Austin last month and they said wheelchairs are not allowed on the veloway.

I'm not slow. I'm very athletic, I push a manual chair, and I go very fast - as fast as a sprinting runner, though not as fast as a bike at full speed. I’m definitely faster than a roller blader. My wheelchair has much more in common with bicycles than with roller blades. Also, allow me to mention, my wheelchair has wheels! I am not a pedestrian, and I would not be using my feet at the veloway.

I strongly feel that I qualify to use this city’s resource, and I ask for the rules to change to allow me to use the veloway.

I have two sons who would be riding with me on their bikes. I can not bike along with them, and they love to bike and use the veloway. They are not old enough to go alone. If I can ride on the veloway, then they will be able to as well.

The veloway does not have many parking spots, yet of those few, three are handicapped spots! My only guess is that those spots are for those with handbikes. The problem is that handbikes are $3,000 each! There is a huge difference between requiring someone to own a $100 bike and requiring them to purchase a $3,000 handbike in order to use the veloway.

Just because my chair has four wheels instead of three, I believe that I should still be allowed to use the veloway for my exercise.

I can't go the miles I want to go on Austin's many rocky trails, and every sidewalk and street in town are graded, angled, so that rainwater can run off of them. This means that when going down a sidewalk, half of my body is lower than the other half of my body, so in order to not roll down into the street, I must push with only the street-side arm. This is incredibly exhausting and provides no exercise for the arm that is facing away from the road. It’s clearly not a method of exercising.

There are no paved hikes available to me in Austin. I only want a trail to use, just like all other bikers, joggers, walkers, and roller bladers have throughout our great city. Such a trail does not even need to be built. I just ask that the City expand the definition of the veloway as has been done in the past: when roller bladers were given access to the wonderful trail. Now, please give wheelchair users access to the trail as well.

There are probably no such things as Rights regarding trail usage. It’s not required by the law that gave me three parking spaces and full access to a trail that I am not permitted to access. However, in a progressive and health-oriented city like Austin, I ask that I be allowed to use the Veloway without spending $3,000.

Thank you for your time.

Top 5 All-Terrian Wheelchairs

2008-08-21T20:40:00.002-05:00

Now this is what I'm talking about.....

Top 5 All-Terrian Wheelchairs

Wheelchair Etiquette

2008-08-18T00:55:00.003-05:00

I saw this on a site, and thought it was a good list. So, I thought I'd post it here, just in case anyone is curious. I especially like #1, #2, and #6. :-) Have a great week!

When You Meet a Person Who Uses A Wheelchair

from: http://www.dizabled.com/wheelchair-etiquette/

1. Do not automatically hold on to a person’s wheelchair. It is part of the person’s body space. Hanging or leaning on the chair is similar to hanging or leaning on a person sitting in any chair. It is often fine if you are friends, but inappropriate if you are strangers.

2. Offer assistance if you wish, but do not insist. If a person needs help (s)he will accept your offer and tell you exactly what will be helpful. If you force assistance it can sometimes be unsafe as when you grab the chair and the person using it loses his/her balance.

3. Talk directly to the person using the wheelchair, not to a third party. The person is not helpless or unable to talk.

4. Don’t be sensitive about using words like “walking” or “running.” People using wheelchairs use the same words.

5. Be alert to the existence of architectural barriers in your office and when selecting a restaurant, home, theatre or other facility, to which you want to visit with a person who uses a wheelchair.

6. If conversation proceeds more than a few minutes and it is possible to do so, consider sitting down in order to share eye level. It is uncomfortable for a seated person to look straight up for a long period.

7. When children ask about wheelchairs and people who use them, answer them in a matter-of-fact manner. Wheelchairs, bicycles and skates share a lot in common.

8. Make sure meeting places are architecturally accessible (with ramps, modified bathrooms, wide doors, low telephones, etc.) so that people with disabilities can be equal participants.

9. Encourage your community to put “curb cuts” in sidewalks. These inexpensive built-in ramps enable wheelchair users to get from place to place independently.

10. Make it a point to try to reduce barriers in your physical surroundings. Often these barriers have been created by architects, engineers and builders who were unaware. A simple “How could someone using a wheelchair get in here?” will help identify any barriers.

Taken from the handbook entitled Free Wheeling published by the Regional Rehabilitation Research Institute on Attitudinal, Legal and Leisure Barriers, Washington, D.C.

It's Neither!

2008-08-03T19:03:00.015-05:00

Sam and Al on Quantum Leap

I'm tired of so much. I'm tired of the question "do you have MS or MD?" 'It's neither! It's CP, not that you need to know.' (I don't really say that, it's just what I feel.) I got asked that today for like the 7th time. I'm tired of little kids asking why I'm in a wheelchair. I just want to answer: "I can't walk, ok. Want me to have to admit it to you? Because I won't admit it to myself, so why should anyone else get the honors?" I don't wanna talk about it sometimes.

I had a hard day today. There's a term I've heard on the internet called supercrip. And you know, some days, I just don't feel like being the supercrip. Today was one of those days. No big deal normally, I could just slink around the building, and not draw attention to myself. Those days are gone, my friend. Never again will I have the sweet pleasure of entering a room without drawing attention to myself. :-(

Usually, I'm fine, and I can do all the sweat and toil it takes to get ready to go out, and to get around the church building, and to field way-too-personal questions from people. Either deal with not knowing, or get to know me and I'll tell you everything. :-) But when they just want the soundbyte, and otherwise don't talk to me at all, sometimes it feels less like they care and more like they're just using me for information.

I'm tired of going for a door at church, and having MANY people try to help me. I want to say it's 18 people, but really it's more like 4 or 5. Still, that's a lot. It's a door, how do they think I get around the rest of the week? One person helping would be fine, not that I need it on those interior doors. Now, the outside doors are worse, though, because there you've got the combination heavy door with bumpy threshold on the ground. Not to mention that it's one of those things where you have to go through two successive doors just to get in the building. I have to use both hands to do a minor wheelie to get my front tires off the ground in order to get over the bumpy threshold. That's easy, unless of course, I'm holding a door that's so heavy I can't push it out at all to make it swing open for the 2 seconds it takes to pop that wheelie to get over the bump. So, I almost fell today trying to get into church. So embarrassing!

At least I figured out that if I go backwards up the ramp in the parking lot that it's possible to get up that steep hill. That ramp is too steep by ADA standards for a self-pusher in a wheelchair. They probably don't care, though. The only people to use that building are those in motorized chairs and those being pushed. No one's ever had to go through these hoops before like me.

That ramp isn't actually so bad. The worst part is when folding chairs are set up with too narrow of an aisle for me to even enter a room without people and chairs being moved to make space for me. That happened TWICE today!!!!

Brian and I have been going rounds this weekend over something as simple as who should hang up the clothes. Because I just can't do it. Not only am I too short, but the doorways into the boys' room and into my closet are too narrow for a wheelchair. I just can't do some stuff. He says I should make Alex do that too. Alex is doing so much. He already does all the grocery shopping and all of a lot of other stuff too. I feel so bad for him.

I feel awful that I have to make Alex do sooooo much. He's really not tall enough, but still he stands on our 2 step ladder and dives down into our washing machine repeatedly on laundry day to get the clothes out so that we can dry them. He's really too short for it, he has to stretch so much to reach every last sock, but it's the only way to wash clothes.

I'm just not in the mood to be supercrip today. I wanted to stay home.

Pictures

2008-07-28T22:43:00.008-05:00

This is one of my nephews, Jordan.

My other two nephews. Sebastian, one sister's son, on the left, and one of our other sister's sons, Jacob, on the right. Jacob is Jordan's older brother. I love my nephews!

Sam likes to sleep holding something, so recently I gave him Purple Bunny to hold. Then we decided to put him in Sam's stuffed animal sling. Purple Bunny is 31 years old -- my mom got him for me when I was 3 and in the hospital. I love that bunny! :-) Now I get to share him with my son.

Here's a picture of Zoe, my new wheelchair, for those of you who don't live in Texas. (Because the people here have already seen it.) It's a very nice chair and I am a lot more free in it than in the previous one. :-)

And for those of you from Tucson: A view of Sombrero Peak from my Dad's backyard.

The Pollywog Blog

2008-07-20T11:50:00.004-05:00

What happens when my favorite band puts out an album of children's music? ..... Finally... music that my kids and I all like to listen to!!! Yay!

The Barenaked Ladies is a odd titled band that is now almost 20 years into their bandhood, and now they're all dads. So, they made an album of all new original kids songs. Below are the videos for probably the two best songs on the album (though I really like a lot of them.) If you like BNL at all, or if your kids are ready for more songs, I highly recommend "Snack Time" by BNL.

Pollywog in a Bog -- by Jim Creegan, bassist

789 -- by Ed Robertson, guitarist

There are a few other videos from this album on You Tube as well. Click here for all of the Snack Time songs on You Tube. I also really like "Things" and "The Ninjas" and "Raisins" and "Crazy ABCs". Sam's favorites are "789" and "Here Come the Geese" and "Drawing" and "Popcorn" and "Pollywog in a Bog". Ok, we like them all!! :-)

School Pictures and the new Stairlift

2008-07-14T16:40:00.008-05:00

It's that time of year again. Time for school pictures for our annual new Homeschool IDs. Here are today's pictures for those IDs.

They protested against having their pictures taken while they were dressed up for church this year. So, instead, they picked out their favorite shirts.

Last Saturday, Brian and two of his friends installed my new stair lift. At first, I was really sad and in shock, because, you know, I'm under 85 years old, I shouldn't need a stairlift. But, then, I started using it, and I'm getting so much more done now. It's really helping me to do things again, instead of being trapped on one floor like I've been for so long. Much thanks to my Dad for talking me into getting it. :-)

Carnival rides at my house for 50 cents a ride! hehe. :-)

Hack Look-alike Meter

2008-07-11T10:31:00.001-05:00

MyHeritage: Family tree - Genealogy - Celebrity - Collage - Morph

Hack Look-alike Meter

2008-07-11T10:23:00.001-05:00

MyHeritage: Look-alike Meter - Roots - Pedigree

It's been ordered!

2008-07-07T23:37:00.003-05:00

I really shouldn't blog tonight, since I only have two woking fingers on each hand today. The thumb and the index fingers work almost all the way, the rest are curled up and won't come out to play, probably not until sometime tomorrow mid-morning, as usual. That happens often, so I'm getting used to it. I guess this is what they call 'hen picking' at the keyboard. But I'm just so happy that I've told everyone about my life now, so I don't have to keep it all to myself anymore and I can keep you updated as things happen. :-)

After a very long week of researching, I finally placed two very big orders this morning. I ordered the stair lift, which might be here for Brian to install as early as this weekend. Also, I ordered my new wheelchair. Since I needed a 2nd one for upstairs, we decided to make my current one the upstairs chair and get a new, much better one for the rest of the time. I didn't get a very nice one the first time because I was thinking it would be for part time use. But, since I'm using it more and more all the time, it's time to get a good one that will allow me to go off-roading! --ok, maybe not off-roading, but not quite confined to sidewalks so much, I can't wait to show it to you, but you'll have to wait 2-3 weeks while they make it.

I'm thinking today that I might name it Zoe. It's dark blue, which seems more Zoe to me than Ellie. But then I have synesthesia, and I think of colors when I think of numbers and letters, so that's why I have to change the name if it's the wrong color. Zoe is blue-black to me, whereas Ellie is yellow, so that doesn't fit. (My sister says that the scientists would love to study my brain!) :-)

Thank you, and an Update

2008-07-04T10:21:00.003-05:00

Thank you to everyone for your kind words. Yes, we're doing better now. Yesterday Brian took a day off of work. He moved everything stored in the garage from one side of the garage to the other, and we added my first ramp. Now I can get from the house down to the garage all by myself. And also, now we can park my car on the far side of the garage from the door, so I have room to ramp down and still get to my car. What a huge improvement! I just realized I should be showing you a picture instead of describing something so complicated. Well, I'll have to get pics when all the work is done.

I guess you could say that it's simpler to be able to not need the wheelchair every minute of the day, but I wouldn't call it easier. It's a whole lot harder to walk a few steps for me than not to, but that's just life. The problem now is that I keep having to walk in our non-accessible places in our home, like upstairs, out to the garage, into the bathrooms, etc., when necessary, and it's completely wearing me out. Either that or I just sit still and don't do anything, which is what I have been doing most of the past 2 years. I'm too young to stop living, I need to keep going. If I go upstairs, I need Brian to lift my legs for me step by step to help me climb the stairs. He lifts the leg onto the next step, and I push up with my crutches to shift my center of gravity up, then we doing it again with the other leg. And once we get up there, I have to lay down and rest or take a nap. It's a huge waste of time and energy. So, the goal is to make the house accessible enough for me that I can still have enough energy to homeschool once school starts up again in about 1.5 months. So, that's my "deadline" to get it all done.

The, what I call a stair chair, is technically called a stair lift. I'm going to order it from this company: http://www.jamesonmedical.com/stair_lifts.htm. So, if you'd like to see what it looks like, you can go to that site. We're also going to order a 2nd wheelchair, so that one can always stay on the top floor. I've been fighting this inevitiblity for a while now, because those two things will be SO expensive. But, I'm just too exhausted without them to do anything, and that's no way to live if it can be helped. I talked with my Dad, with Brian's Dad, and with Brian, the three men in my life, two of whom (the Dads) can build anything and know a lot about house modifications, and all three of them said it's cheaper to do the stair lift and the 2nd wheelchair than to move to a one story house. So, as much as it costs, it's still the better way to go, I guess.

So, now that the garage ramp is in, we're spending the rest of this weekend on small house maintenance chores, partying tonight of course, and picking out all the details for the stair chair and the 2nd 'chair.

Speaking of which. She'll need a name. My crutches are Abby, or Abigail if they're falling and I can't catch them and need to use a stern voice with them, hehe. My chair now is Charlie, named by my sister Krysten. I'm thinking of maybe Ellie for the next one. I'll have to wait until I order it and then when it gets here, then I'll know which name to go with.

Have a great 4th of July!

Adaptation

2008-07-02T11:44:00.006-05:00

Picture from Disaboom.com

Hey there old friends! Sorry I haven't written here in a while. My life has been changing a lot. Kelley, congratulations on your new baby. Brian, congratulations on the move to Georgia. Lisa, congratulations on the move to Kansas. Anna, yes, I actually wrote in my blog! :-) Miracles never cease! hehe :-)

I hope everyone is doing well. Since about February, my mobility has been quickly declining, and I've been dealing with and adjusting to that, so I haven't had time for blogging. But, things appear to be stabilizing out now, and life is attempting to return as much as possible to normal. So I've been eager to write here and to reconnect with my friends all over the country.

I wanted to take this opportunity to let everyone know that yes, I look different than I used to, but that it's going to be okay. I'm doing alright. I use crutches and a wheelchair to get around now. These are just tools for travelling, like a bike or a car. To quote Christopher Reeve: "I'm still me." :-) Actually, I'm a whole lot more social and talkative than I used to be. Interesting side effect. :-) I like it!

I write this to inform my friends, and not to complain. I was born with a spinal cord disease that has been slowly getting worse the older I get. I didn't know how bad it was going to get, and so I thought it was best that I didn't tell anybody, so as not to worry them with something that couldn't be fixed. If I had known that I would be where I am today, I would have told everyone years ago, in order to prepare them for what has come. But, I didn't know either.

In the past 4 years, I've slowly done fewer and fewer things that I love. I've stopped hiking, going on walks at town lake, biking, gardening, home improvements, and other recreational activities such as going to Sea World. In the past 2 years, I've cut down on even required things, such as some grocery shopping, cooking food, doing laundry, cleaning the house, and following my kids around. Going to the beach last year meant mostly sitting on the shore watching everyone else try to surf, and being in incredible pain from trying to walk on the uneven sand.

Earlier this year, around February, everything progressed a whole lot quicker. In addition to the pain of spastic muscles, I began to also have incredible weakness in the affected areas. It has become incredibly hard for me to move my legs and feet and sometimes my right hand. I went from a cane (which I really should've started using about 2 years ago, but I wasn't humble enough back then), to crutches, to now, in which I use crutches for really short distances and a wheelchair for medium to longer distances. It takes a great deal of effort to do what I used to do with a lot less effort when I was younger, so I can only walk a very small amount each day.

This is just how it happens with some people, and it appears I'm one of them. It should steady out soon, if it hasn't already. I have it in my legs the most and also on the right side of my body, so my right hand, for example, isn't nearly as useful as my left hand. I have a therapist who helps me, and I do lots of stretches to help the muscles not get too tight. Since I'm not a young child, though, that's about all that can be done. So it's just a matter of adjusting.

I know it's a big shock for a lot of people, and I'm sorry for that. Anyway, I don't write this here to complain or anything, but because I know so many of you care about me, and I wanted you to know what's happening. It is permanent, but because I can still take a few steps now and then, it's still better than a complete spinal cord injury, and I'm grateful for that.

Our home has stairs. We considered moving for a while, and instead we've decided to modify the home with ramps and stairlifts, etc. It's cheaper to modify than to move, plus we love our home, so we're staying put.

Well, that's all I can think of. Don't hesitate to ask me questions if you want to. At first, earlier this year, I was very hesitant to tell people something was wrong with me because I'd been hiding it for so many years, and it was a strange adjustment for me to start telling people. But I'm over that now, and I'm sorry that I was so shy about it for so long.

Anyway, Brian and I are adjusting, and are beginning a new chapter in our lives. Brian is a wonderful help, and has really been a great support to me. I'm so grateful for him! He's taking such good care of me that I feel he needs more support than I do right now. We know it'll be okay, the Lord is taking good care of us.

Change is in the air!

2008-04-18T22:13:00.014-05:00

Alex's Cub Scouts had their Pinewood Derby last week. Brian and the boys had fun making cars. Here, you can see Alex's car, it's the blue one with racing stripes in this lineup.

Out of 13 boys, he placed 5th in the race, which is really good! He also won the award for the Sportiest Car. (He actually enjoyed himself that night, he just didn't feel like posing for this picture.)

We had some sub-floor leaking and mold in our master bathroom, so it was time for renovation. Brian's dad came and spent all week reflooring it and retiling the bathroom. It looks gorgeous!!

It's a basic tan tile that we picked out, with bone colored grout. I love the baseboard perimeter tiles too! They really class up the joint.

We also took the opportunity to change out the boring light fixture and replace it with this, which I love.

The toilet had to be removed for a week, and has now been reinstalled. It's a whole new bathroom! Much thanks to Brian and Brian's dad who did all of this amazing work.

(The chair there is just for when I get ready in the morning or brush my teeth, since I can't stand very long.)

We also bought a used sports table from our neighbors who moved last month. Under the foosball level, there's also ping pong, air hockey, pool, shuffleboard, and a few other games. We placed it in Sam's room, partially because he loves it the most, but also because it was the only space in the house where it would fit.

Brian's parents were just here for a week. It's my kids' favorite time of the year when they come! They brought us a Christmas present for last Christmas and for the one this year, a Wii! So, you can guess what we're doing with our spare time now.

An aerial shot I took from above them while I was on the stairs.
(Or maybe I was hanging out of a helicopter like my dad!)

Happy Spring

2008-03-31T23:05:00.005-05:00

Hi there. I know it's been a while since I've updated this blog -- so I thought I'd get back into the habit by just saying a few words here tonight. I downloaded our camera to see what was in it and found these pictures...

Sam took this picture of his animals.

Now he's "feeding" them.

And here's a picture someone took of Sam all ready for church.

The boys recently planted seeds in their gardens, so when those seeds sprout, I'll show you pics of that as well. Have a great week!