Going to try to travel

Traveling has always been a big part of my life. Since my disease onset (Dec 23) I haven't tried to travel along and this week I'm going to do it. I'm going to Dominican Republic for a UNWomen meeting. I'm a bit nervous about it and I've booked airport assistance for all along the way ... staying in a fancy hotel so I hope it all works out. I'm facilitating a meeting for UNWomen on challenges in Training for Gender Equality.

I've slowly been gaining more mobility and have increased and moved  to physio that allows me to actually do exercises that will strengthen my legs. Sometimes I feel like I'm learning to walk again. I've also developed coccydynia which is inflammation at the bottom of my tailbone and it hurts to sit. The positive thing is that I have a wonderful physiotherapist and hope.

I'm also off of diary and glutin and it seems that especially the absence of dairy is helping out my stomach. What a journey. What a roller-coaster. I want off.

One of the interesting things that happened this week is that I met another woman with rheumatoid arthritis - it was so nice to have someone understand what I was talking about and going through. Then tonight I opened up my blog (after a month away) and another woman who had psoriatic arthritis had replied to me. We are not alone. SUpport is SO important. 

Support Group

I have been struggling to find a support group or people who can understand psoriatic arthritis. Finally I found a group at 
http://www.livingwithpsoriaticarthritis.org/
It turns out I'm not alone!! The thing about psoriatic arthritis is that it's so rare you start to feel really rare (okay maybe I always was). But in any case it makes it hard to discuss the disease, the symptoms and the possible interventions. At least I can now do that with a group who are living with the same. What's also interesting is that the site was only started this year.

What to Say, Not Say or Accept

One thing that I really noticed over the last few months is that people have a hard time knowing how to respond to someone who is obviously in pain or cannot walk. Often what is said or the way people view you, displays this. One day after I used the wheelchair at Costco, I was trying to leave and the staff at the door said that I couldn't take the motorized chair outside. I had a small box of food but I walk with great difficulty and adding the weight of the food or anything for that matter, puts pressure on my legs and consequently pain. Suddenly I felt eyes on me from all around (I've always hated getting attention when I'm not trying to). I tried to stay composed. Thankfully a woman with two small children and a cart of food offered to help me. The rest just continued looking at me with pity. Please, if you see someone needing a hand offer it. But keep in mind that not everyone will accept and that's okay too.

In May I was in Victoria for a conference and ran into someone from UBC who said don't you wish you could just have 3 buttons that you flip depending upon how you feel -- one says "I need assistance please" one says, "fuck off" and one says, "I will discuss it later."  Yes, I do. A visible disability means that people see it and that seeing, for the one experiencing the disability, creates additional discomfort. Further, my mind is active and I do other things and I don't want to talk about my physical being all the time. However there are other times when I do, but let me control that. Further you don't have to know someone who has the same problem and certainly you don't have to have something similar either. Many people compare what I have to someone else or themselves. For example, saying, "My grandmother has problems with arthritis" does not make a me, 52 year old woman feel good. It makes me bitter - I'm not old. Sometimes I don't want to talk about it and I want that to be okay too. Finally saying it must be really hard as you were so strong and independent makes me wonder -- am I not still strong? Okay maybe not as independent and that's hard, but I'm working at it. Tell me you're proud of how hard I'm struggling to fight this - that makes me feel good. And, it is the truth, I am.

If you want to help, offer a hand and realize that it's okay if it's not accepted. I have learned this the hard way - hopefully my thoughts on this are shared by others. Also fight for disability rights. Wheelchairs should be available in public places and curbs should be accessible. It reminds me of the Occupy movement: "Whose streets?" Response: "Our streets" Let's make them ours - all of ours. It's a small but important gesture.

The entry is rambling because I am tired. We went to Batoche Days today. Not exactly a good place to go as I couldn't walk around and they didn't have enough accessibility carts. And to top it all off, I got shat on by a bird - argh.

Coping with Metaphors - Dancing on a Magic Carpet

Solstice has come. It was at the end of a good week. I saw a great physiotherapist (Ann Marie Graham) who left me feeling hopeful and learning more about my coccyx than I ever wanted to. Yoga once again a possibility - she said to use the 24 hr rule - after trying exercise (bicyle, swimming or yoga) if I wasn't in pain for 24 hr later , I likely had not hurt myself. I need to exercise - body falling apart; lots of flab. THis was followed by 2 days with movement without pain and the opportunity to cycle 6-8 blocks on each day. Then another setback. The physio suggested that I not focus on pain because pain has a short memory; instead focus on function - what can I do now that I could not do before.  I'm trying.

On the morning of the 21st I went for a massage. I was needing support; spiritually as well as in other ways. Pam, my massage therapist, did cranial-sacral; we worked toward finding a metaphor or representation that I could work toward - by the end I had found one. It was me dancing on a magic carpet. I saw someone levitate in India once (below the Red Fort) and later came to learn it had something to do with an out-of-body experience. I think for me the idea was a freedom of movement - something I no longer have and I desperately crave. The metaphor was helpful.

On the evening of Solstice we were invited to a party up at Anglin Lake - in Marcia's round cabin. We engaged in a talking sunflower circle - like an Aboriginal talking circle but we passed around a beautiful sunflower. I found within me that the event reminded me that I had now gone from the winter solstice (dark) to summer solstice (light). Indeed dancing on the magic carpet was my image for moving into the light. (My body has yet to cooperate with the image, but I'm working toward it).

TED talk from Sasha

Sasha just shared this TED talks with me. It relates to how difficult dealing with bad health can be. It's a bit hard to connect with at the beginning but interesting after. Thank you Sasha. Here is the link http://www.youtube.com/embed/lfBpsV1Hwqs

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.