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