Tuesday, February 02, 2016

The Face of Facing Rheumatoid Disease

I have done it again. 

Somehow 6 months have passed, without a single post to this blog. It's not that I didn't have things to post about. There have been trips and transitions and adventures aplenty. There has been spinning and weaving--so much weaving. There have been developments and changes and growth and frustrations and....all those things people blog about. 

I hesitate to call it "writer's block", but, really, that has been the problem. I have had much to write about, but each time I sit down to write, there is nothing. There is much to say, there just are not words to say it with.

But today, I have words. Today, I am inspired to write. Because today is Rheumatoid Disease Awareness Day. Today is a day to share and to write about the true face of rheumatoid disease. To write about the root of my writer's block.


I am still relatively new to rheumatoid disease. This month marks the third anniversary of the sudden onset of the symptoms that led me to a rheumatologist and the eventual diagnosis of rheumatoid arthritis and/or lupus. Three short years, yet a lifetime.

When I was first diagnosed, I was told I had mild to moderate disease activity. That we had caught it early and that I could be in remission within 2 to 3 years with minimal treatment. Blood tests indicated that I fell into a category that required minimal treatment. That didn't seem too bad, though I did have to learn to inject myself with methotrexate, a chemotherapy drug with a rather frightening reputation for nasty side-effects. (It turns out I tolerate methotrexate quite well. Side effects happen, but they are mild.) But, hey, 2 to 3 years. I could handle that.

And then the circus began. I was referred to an education program, where I was monitored and trained by a team of physiotherapists, occupational therapists, and dieticians. A joint count was done, finding moderate to severe  inflammation in 57 out of 60 joints. After three months, it was determined that there was permanent damage to multiple joints in my hands and a series of splints were fitted for different joints and for different functions. X-rays and MRIs and nuclear bone scans became a thing I did. Monthly blood tests are routine now. Medications were tried and discarded, dosages were fiddled with. Blood tests levelled out, with little to no inflammation showing up, but my joint symptoms spread into my tendons. I now have chronic tenosynovitis in and around all of my joints, from the tiny joints in my toes to the big rotational joints in my hips and shoulders, and inflammation ateach tendon   insertion (called enthesitis).

I have symptoms in other parts of my body too. Shortness of breath and wheezing and even occasional crackling in my lungs. Hoarseness caused by the inflammation of the joints around my vocal chords. Chronic bursitis has developed in my large joints, and I get injections into those bursae every 3 months. I get dizzy spells that last for weeks, but are completely without any physical cause. I have bouts of fever, and every now and then I get a rash on my torso and shoulders. Headaches and fatigue are my constant companions. I have something wrong with my wrists that does not have name. The doctors all just call it "hmmm, that's weird".

This is my "mild to moderate" disease.

This past summer, I hit my biggest roadblock yet. I had to change rheumatologists when my first one moved away. The new guy was very thorough, and very kind. He told me that all of my indicators for RA appeared to be well controlled. But. My other symptoms suggested to him that I was still quite sick. That the tenosynovitis and the lungs and the headaches suggested an ra/lupus overlap to him. And that, bottom line, this was as good as it was ever going to get.  

Dosages were upped again to their safe maximums. But this is as far as they go. There are other drugs called biologics that may help, but my original diagnosis of mild-to-moderate and my new diagnosis of lupus keep me from qualifying for those drugs at this time under the protocols in place here in Alberta. The physios, the OTs, and my GP have all done a marvellous job of supporting me and offering pain management and joint protection. I am not well, but I am functional.

So this brings me back to that writer's block thing. My block began the day I was told "this is as good as it's going to get". It has taken me until now to realize that, at that moment, I lost hope. That I had been expecting remission within 2 or 3 years. That I was going to have to live like this for...who knows how long. And I stopped.

It has taken me 6 months to accept that pain and stiffness are just part of the deal for now. That there are ways to work with the disease, and to work around it. To truly understand the limits placed on me, and then to work with and around those limits. And to recognize that just because those specific limits exist, that my life is not limited. This may be my new normal, and while I may miss the old normal, it's really not so bad. I am learning what is truly important to me. And I am embracing it. I am moving out of the hopelessness and forward into...something new.
And today is another day. Today is the day to share my story. To show you the face of Real Rheumatoid Disease. That face can look like fear and frustration and hopelessness sometimes. But it can also look like resolve and courage and acceptance. It can look like the face of a warrior who has taken some time to study her enemy and understand her own vulnerability and choses to go forward into battle in spite of the dangers. It can look like a woman sitting down to write on a neglected blog to share her story and reclaim some of her power back from a disease that is misunderstood and undertreated.

This is my RD face. There are many, many others. Look on Twitter and Facebook today for the hashtag #therealrd and read their stories, too.