Learning (Dis)Ability

Background
 
This is me. Six months ago, well on December 23 to be exact, I started learning what I would now call a disability. I call this blog Coping and Hoping because that's what I've been trying to do. Every morning I wake up and the first thought that comes to my mind, is will my knees hold me this morning; how much will it hurt to walk, sit, stand, etc.  However, it's no longer just my knees - now it's my lower back and shoulders ... the pain seems to mainly be the inflammation - but also knees and hips that click out of place at random.

On Dec 23, after two days of cross-country skiing in the mountains, I was barely able to get out of the car. I knew something was happening to my legs a couple weeks previous to this as I went to my doctor and told her; She moved around my lower body a bit and said everything seemed fine. ... Dec 23 also marked the beginning of a five month stretch of guessing, misdiagnosis, and appointments with all kinds of healers and medicine in hopes of finding out what was wrong.

On Dec 27 I hobbled into the doctor's office again, this time with a cane. She sent me for x-rays. The x-rays showed osteoarthritis in both knees, an old fracture in the left (no recollection of what this might have been); and wear and tear in different forms on both knees. I was referred to a knee surgeon and for physiotherapy. The physio was initially good and then I realized it was literally a tread mill and the therapist had no time to talk to me - just in, out, do the exercise and repeat. My mobility was not changing after one month.

Doug and I went to Costa Rica. Some people said that heat was good for arthritis. Doug realized there really was something wrong with me on this trip - especially after pushing me on wheelchairs through airports and carrying me to the beach (can't walk on shifting sand).  The heat didn't help me. I saw a applied kinesiologist - it was an interesting treatment for $170 and he mentioned problems with my kidneys ... but no answers.

 After two months the knee surgeon met me, said my pain was not typical of osteo and referred for an MRI. The MRI showed more problems - bursitis, cysts, ACL (ligament) damage and more. I was worried and of course, began researching alternatives to knee surgery - at least, for the short term. He put me on celebrix for the inflammation.

I went to the pediatrist and got new orthotics.   Finally at the beginning of March, the knee surgeon met with me again - he said there was nothing he could do for me. He suggested my doctor test my blood to make sure the celebrix was not affecting my kidneys. I did. There was/still is blood in the urine. He also suggested my doctor refer me to a rhuematologist. Her initial response was that she doubted this was necessary as my blood tests were fine. I tried to find another doctor. After waiting five weeks, I had an appointment with another doctor. When I got into her office, her first statement was,  "I hope you don't think I"m taking new patients?" (My father had a tia stroke the day before; her statement was too much for me at that point).

I started taking acupuncture - Dr. Li thought it might be circulation. I never thought I'd have acupuncture as I am terrified of needles (I have to lay down to get them so that I don't faint). I was successful in visioning large mosquitoes biting me and, imagining that, got me through the first two sessions. After that it ceased to be painful.

I researched osteopathy and found out there was one in Saskatoon. I asked my doctor for a referral. She said she'd never heard of osteopaths (they work on the whole body system instead of just an affected area). She reluctantly wrote me a referral. I went and had a 45 minute family history taken (longest I had ever had) and started treatment. Probably the most telling sign from this was when the osteopath said, "I feel like something is coming from your stomach." I also learned that this young woman (the osteopath) had been to Nicaragua and assisted with personal training (something I continue to hope can be part of my recovery if (no, Pam told me to say when) my body has recovered enough to accept exercise.

I went for massages - sometimes the lymph drainage seemed to give temporary respite. I also did some very mild yoga -- with mixed results. I iced my legs regularly with ice packs, ice machines, etc. Several people suggested heat (people always have suggestions). I went to the spa at Manitou Lake. I swelled up like a balloon.  For me, the healing waters had become a curse. My body was a curse. I felt betrayed by it.

I went to Dr. Ho - a well respected Chinese doctor in Saskatoon. He asked me what I dreamed about. I told him that I dreamed about falling and not being able to get up. .. that in a recent dream I was trying to pass someone walking in front of me and they pushed me down - I couldn't get up. His first reaction was to go to my lower back. He pointed out a cyst on my lower back. He said that is where the pain was coming from. He gave me drops - Thuya - they originate from the cedar tree.

Finally a chance to see the rhuematologist. I spent 1.75 hr in his office and getting the associated tests. I felt confident that he knew what he was looking for. He suspected some form of spondolo-arthritis and auto-immune disorder. Two weeks later I went back to meet with him again. He confirmed that I had an auto-immune inflammatory arthritis of the large joints - likely a cross between psoratic arthritis and Ankylosing spondylitis - both because of my genetic pre-disposition to them and my lack of mobilitiy in my back. 

web-sites, reading, thinking, crying, hoping, back to Dr. Ho - he is giving me drops to slow down my immune system and fight bacteria in my system. The literature does not say for sure what causes the onset of Psoratic arthritis but it's possible that it is viral or bacteria. 

I've kept teaching and going into public. That's the next story.