Complimentary Medicine

It's been more than a year now since PSA hit - autoimmune, inflammatory condition. I am still on a DMARD  - Sulphasalazine-  but nothing else except herbal and complimentary medicine. I also engage in yoga. acupuncture, diet modifications, osteopaths, etc. The good news is my mobility is coming back (primarily in my legs/knees and one shoulder) and the pain is subsiding. Sleep and stress reduction seem to also make a difference so I try to get lots of sleep and reduce stress (always a challenge) . Walking is still slow, but I biked about 15 km the other day. I am hopeful but it is hard work. Tonight I start a mindfulness-based stress reduction course. I am doing exercises from physio daily. I am taking nothing for granted - including the fact that I have health benefits and an income that allows me to try different remedies. The learning curve is huge and encompasses a lot of time and energy. I fully believe that the path is somewhat individual but that by supporting each others' efforts and demonstrating compassion we can make a difference. I am very grateful to the friends that have given me constant support.

New Year ... more hopes

I'm glad 2013 is over. I'm hoping that 13 is really an unlucky number and now it's over! Several people, mainly of Indigenous ancestry think that I had bad medicine put upon me. In any case, my condition continues to improve (go into remission). I was able to travel again in November - this time to Chile for research and then a short trip to Buenos Aires and Uruguay (the latter is definitely a place I'd like to visit again in the near future). I was able to walk up to 10 blocks as long as I don't rush and rest when necessary and cycle for much longer. Here is a photo from Montevideo- reading a paper in the same restaurant where Eduardo Galeano does much of his writing.

Of course little setbacks remind me of the disease and how it still controls my body. I worry about going back to teaching (something that has put me into a wheelchair on two occasions). I also have my first cold in over a year and wonder how this will affect me - so far it's my stomach that seems upset but because of the autoimmune nature of this disease I have to constantly be wary. Overall however I am optimistic that I will gain more mobility and slowly make a physical recovery that permits long walks and avid cycling - something I long for in many ways.

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