Some of you reading this may know me as a friend or family member. I am 38, a mom, a full time employee, a supervisor, a colleague, a local hospital volunteer. Others may know me more distantly, a Pinterest addict or that mom at Target wrangling my very curious and impossibly cute little girl.
What you may not know about me is that I am a person with a disability. More specifically, a person with a cluster of auto-immune diseases. My illness is chronic and so is the pain.
For those of you untouched by auto-immune disease, let me explain (briefly). My immune system can be described in many ways: confused, hyper-active, faulty… In short, instead of attacking just exterior sources of infection or injury, it attacks itself; my body, fighting with vigor.
I did nothing to obtain this disease and there are no clear ways to clarify why they occur. Trust me, I read the literature and stay on top of the research. Oh yeah, I am a geek too.
My journey began long before my diagnoses, but 10 years ago, I was diagnosed with Crohn’s disease. Crohn’s is an inflammatory bowel disease (sounds sexy, I know) resulting in severe pain. Symptoms vary, but like so many other Crohnies’ it results in reduced gastric motility, internal bleeding, malnutrition, intestinal strictures, bowel obstructions, distention, fatigue, spasms, intense “urges” to eliminate, chronic diarrhea, and oh yeah, and did I mention… severe pain.
The sneaky underbelly of auto-immune disease is that like Lay’s potato chips, you are unlikely to have just one. Over the past 10 years, my immune system has I’m sure protected me from some foes, but it has also caused inflammation in my iris (iritis), skin (psoriasis), joints and spine (psoriatic arthritis and ankylosing spondylitis). Had I known all this beforehand, I would have taken Latin back in Catholic School.
Right now, I get by, I do ok and for all intents and purposes, I am fine. I have a great deal of privilege in my life. I work a full time job where I can be open about my disability and be accommodated, if need be. I am white, middle class, married and educated (I’ll let all my super-smart social justice friends explain to you the importance of that). I am far from perfect, but in just the place to advocate for change, with the least amount if judgment.
I follow a gluten-free diet, I exercise, I practice yoga daily and yet for right now, I am just a half-step away from a true loss of mobility.
I’ll admit it. I have some fears about the future, my future. The pain and the worry awaken me in the night. To provide you a little context, right now, I am up at 3 am on my bedroom floor, stretching my joints and writing this, having surrendered my side of the bed hours ago to my little one, who is now sleeping in full starfish pose. But I digress…
I would be foolish to think the worst symptoms are behind me. Statistics inform me that the likelihood for another surgery to remove and hopefully reattach my intestines is likely. As is the possibility that I may lose some sight if the iritis returns. I gave up my beach body days back in 5th grade, so I am less concerned about the cosmetic aspect of the psoriasis, but like anyone, i pray it does not re-occur on my face or hands. I have seen the expressions on people’s faces when they’ve see my dad’s big, psoriasis scaled hands. It is not the honor I see of 2 hard working hands that always supported me; it is disgust at the peeling, cracking and flaking.
The spondylitis and arthritis are degenerative and as we “speak” flaring like gang-busters. I share this joy with my brother, who also has AS. We reminisce over how many hours we can sleep (averaging about 3) before we have to stretch and re-locate to keep up with our busy lives. We don’t talk about it much, but I know our mom worries about the long-term effects poor sleep will have on us. We have to remember to not tell her about the times we have fallen asleep at red lights.
Right now I am doing my best with diet, exercise and supplements to improve. I see an awesome chiropractor regularly and even have a little timer in my office that reminds me to get up and move every 20 minutes to reduce the likelihood of repetitive stress injuries.
Unfortunately, my rheumatologist (and core to the point of this post) informed me that conventional medicine to reduce inflammation to my spine and sacral joints are not appropriate for me because most are NSAID or anti-inflammatories which would exacerbate my Crohn’s disease and can cause internal bleeding. He wants to put me on Humira (a self-injectable biological medication) and when I told him I did not feel comfortable doing that, he said, “well, that is all we have to work with, so come back when you are ready to take it”. Gulp! If you haven’t had the pleasure of watching a Humira commercial, side effects include rare cancers, lymphoma, inability to recover from infection, increased risk of tuberculosis, death. So yeah… I am not ready!
I, like so many others with auto-immune, digestive disorders, some cancers, etc, are not able to take some of the medications that reduce pain. Nearly all pain meds result in decreased gastric motility, which leads to more pain and other health problems. The last thing you want when you have a bowel obstruction is to drag it out even longer. So, we persevere and quite honestly, we struggle.
I don’t use drugs. I don’t smoke pot. That said, I do want more tools available to me to care myself, should I need help with pain management. I want no more than anyone else; to live a full life. I want to be able to maintain as my symptoms progress with age and determination. I do not feel that I should be denied any reasonable opportunity to seek relief. Medical marijuana is tricky. I have done my research there. It is no panacea either, that I know. But at the end if the day, when you’ve done everything you can and are in pain, day after day, through no fault of your own, I see no reason to deny anyone the right to some relief.
I strongly urge all MA voters to vote Yes on 3. Do it for me, do it for you. Remember, we are all one birth, one illness, one accident or some aging away from having a disability.
An interesting little ditty to consider (this came out on 10/9/12)