Friday, December 18, 2009

This might be a dead end

My bloodwork is normal! I prepared myself for this because a huge part of me felt that the bulk of my symptoms were related to the Dandy Walker. Also, I didn't want to be disappointed with the results. I think I was a bit desperate for a blood test to give me a definitive answer. I am relieved that nothing serious appears to be going on. My family doctor suggested I see my neurologist, which I had already planned to do after my MRI on December 27. Maybe the neurologist can bring me closure.

Here I am preparing myself for good news again. I don't think the neurologist will find anything wrong with me. I can see him agreeing with me that my leg weakness, aching after activity and loss of balance, all of which I used to experience as a young child, is again related to the Dandy Walker. It still seems strange to me that all of the symptoms became more severe with the virus, though. Is that a coincidence or can illness provoke symptoms of Dandy Walker? Or maybe it's not Dandy Walker at all.

A conclusion of Dandy Walker doesn't explain the abdominal pain or feet and ankle swelling, though, so I'm thinking that might be a separate issue. My family doctor didn't have much to say about all this, so I think I'll see my internist again for her opinion. I think I'll see my cardiologist again too because my Digoxin is a little low and my heart races when I'm standing or walking. Could that just be because I have to exert myself to stand and walk? I don't think so. It races even when I'm just sitting down too. Could it be that my heart is contributing to the leg fatigue? The heart racing hasn't been for the past six months, so I'm assuming that it's not related to my illness.

If my main issues are indeed related to the Dandy Walker, then that means since my virus ended I've been suffering from a disability, not an illness! I keep thinking about all of those times I've been telling people I'm sick! I'd be happy to seek physical and occupational therapy to manage my symptoms -- anything to help me feel stronger and more comfortable. There must be exercises and mobility devices for me! I'm getting excited to learn how to live with this rather than complain and then put my feet up. With therapy I will feel actively involved in my recovery or the management of my disability.

Sometimes I feel that a cane would help me, but I'm afraid that people might think I'm looking for attention or exaggerating my situation. That's not it at all! A cane would relieve pressure from my feet which are already sore because they're flat and I sometimes strain the muscles in them to keep my balance. It would also prevent me from winding my back when I walk, help me keep balance and stay on my feet comfortably for longer periods. I think I would only need the cane for walking long distances or standing for long periods.

And I can see exercises helping me too. I often practice "tightrope walking" and standing on one foot for as long as I can. I remember when I was about seven I went to some sort of physical therapy and had exercises to do at home like playing wheelbarrow with someone holding my legs up. I was also instructed to practice walking like a penguin, but I'm not sure how that was supposed to help. Maybe some sort of strength training would help my legs, but I'd like to do that with a trainer who can help me figure out what weight would be good for me, length of training, etc. I feel really optimistic that I can help myself. I considered seeking help in these areas earlier, but I figured these would just get better on their own or that it would be better to go to therapy when I felt better.

I'm a bit upset to think that maybe this manifestation of Dandy Walker is permanent. Regardless, I'll always have to deal with it, my arrhythmia and my asthma. Lately I've found myself asking "What if?" a lot, mainly "What if I can only work part-time someday?" or "What if something else is going on that my doctors aren't looking for or haven't been able to detect?" Everything is unknown, but at least the bloodwork ruled some things out.


  1. You're amazing Leybee! Who else talks about "my" cardiologist and "my" internist and "my" neurologist with such casualness. Good golly woman, you're just amazing.

    Know what you should try for strength for your legs? Swimming. It works the muscles but is a lot less taxing on your body. I think a lot of people recovering from injuries do some therapy involving exercise in water. Could always try looking into that?

    PS. I'm glad that the bloodwork is ok.

  2. Thanks Lindsey! Maybe people who haven't always had these issues wouldn't write so casually about it. They'd remember life without them! It hadn't occurred to me that I write casually about it all. Nothing feels daunting or unusual about my experiences.

    I didn't think about swimming! It would help with my co-ordination, too. I'd better make use of my pool, but not now because we closed it up. Also, it's probably frozen.