Waiting is a killer...

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

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! :-)

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!

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

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

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

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

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!

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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?) :-)

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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.

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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!

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