July 20, 2011

Heavy Things

I haven't done a lot of talking about my RA. My mom has always tried to get me to focus on the positive and just live as much as I can, so I haven't looked at it much even though it keeps rearing its head and demanding my attention. I keep trying to ignore it and find a new normal, but it's hard--and now that I'm seeing blogs of other people with RA, I'm realizing all the things I haven't admitted to myself.

It took me a long time to get my diagnosis, at least a year. I have no RA blood factor, so I was sent for blood tests over and over, x-rays and finally MRIs (limited to my hand since I have metal in my upper spine).

It was only the erosion in my left wrist that convinced the rheumatologist to treat me; before that, she told me she felt for my pain but she didn't want to give me anything. She sent me to my other specialists and for nerve tests, saying that perhaps it was my nerves causing me so much dehabilitating pain. I tried to survive by soaking my hands in hot water constantly. Luckily someone I met warned me to be careful about getting it too hot; I would just put it as hot as it would go.

The neurologist I was sent to wanted to do an hours-long test of my abnormal muscles and nerves (I was born with Arthrogryposis). She wanted to hook leads to my whole body and send electrical pulses to all my nerves to see how they'd react and what the Arthrogryposis had left me with. A lot of doctors I've worked with have expressed a lot of interest and curiosity in my condition, putting me through test after test. They usually express fascination that I can talk so fluently and communicate my experiences. Sometimes I feel like a Magic Eight Ball. My bones are so unique that a bevy of young medical trainees going through my hospital ward immediately recognized my x-rays from their class.

I have a very rare condition and a very high pain threshold from all of my bone surgeries and from having to walk in KAFOs from the age of 2 to 14. Yet when I mentioned the test to my other doctors and to people who had had them (usually of one limb) they'd grimace and tell me how painful it was. I started thinking about it, and suddenly realized that the doctors were only satisfying their curiosity--how many muscles did I have? How would my nerves work? If they were really looking for an answer to my problem, wouldn't they study my arms and hands? I told them no, and I've been glad ever since. I think that was the first time I was allowed to say no--when I was younger, my mom and dad thought I should be polite to the doctors. Sometimes they'd agree I shouldn't have a surgery, but that was the extent of it (and one of my other doctors agreed with them and disagreed with the doctor who wanted to do the surgeries).

At the time, I hadn't had the MRI yet, but I knew the doctors would find an answer eventually because I wasn't going to let go of it. I knew my pain and stiffness was not in my head. I'd learned the hard way not to let my doctors brush me off: for four years, they brushed off my lower back pain and heat flashes, saying that I was only sympathizing with my mom, who was going through menopause. Then they found an infection crystallizing its way up my spinal rods, one that had to come from my first back surgery, four years prior. It's a miracle I'm still alive. I've never understood why some health professionals act like I'm only trying to get attention. I don't talk about a lot of things that affect me; I'd rather be out living! I'm introverted by nature; I don't mess with things unless they make it impossible for me to live.

Anyway, without talking about my whole medical history in one post, the rheumatologist started me on Methotrexate weekly and a half pill of Plaquinil morning and night. She gave me Tramadol for the pain--I was started out taking two pills every 6 hrs, and then backed it down to 8 as I started my treatments and it got bearable. Sometimes the pain is as bad as my bone surgeries were, and they gave me Morphine for those. Why they don't believe me when I tell them this is the same, I don't know. I'm not asking for anything, just stating a fact.

Anyway, the rheumatologist changed my prescription to half of a pill instead of two, without talking to me, and made herself unavailable to discuss it. Since it was a clinic from the lower income area of town, I had to submit to drug tests frequently as well--but they wouldn't let me schedule them while I still had meds; they'd wait until I ran out and then tell me I needed to take a test and that we'd schedule it. The clinic's personnel acted like there was all the time in the world and like my pain wasn't bad enough to keep me from sleeping at all. I once went for three days with no sleep; sitting reclined in my wheelchair because I could not find any position to be in. I was a zombie, somewhere between waking and sleeping, unable to do anything. I cried intermittently until I got too tired to keep it up.

Waiting in the clinic's waiting room after my mom managed to get me in, they had me waiting for hours in my manual wheelchair that doesn't recline. (My mom has no way to transport my electric wheelchair). Finally they'd grudgingly give my my meds, looking at me suspiciously as though I were a drug addict. I would fill them as soon as I could, but never take any more than the bottle said, and never sooner than the alarm went off.

I knew I was going to be in trouble on half a pill though, when I was told--a crushing desperation came over me--how could I live? My pharmacist told me that I needed to talk to my doctor because he didn't think my pain was being well managed. Then my rheumatologist quit! No letter, no notice--the clinic told us when we tried to schedule an appointment to talk to her about my meds. I had been forced to call my primary care doctor for some Finergan, since the MTX had me dry heaving with no breaks and I was exhausted and having trouble breathing between heaves and I couldn't reach the rheumatologist.

I broke down, when I found out that the rheumatologist had quit--I had held it in, forcing myself to stay together even when I felt like I was flying apart, but that was the last straw. I bawled. My poor family.

Anyway, mom took me to my primary care physician, who evaluated me and said she would keep prescribing my meds so my joints wouldn't deteriorate further while she helped me look for a new rheumatologist. She gave me the two Tramadol pills every 8 hrs and started me on 3ccs (I was supposed to have five) and said we'd see how that went. I found that it gives me some flexibility, though I get more flexibility (and sickness) the more I take. I've been trying to take a little more each week. So far I'm up to 3.5-4 ccs.

I have my bucket days, but I usually have at least two good days a week, which I think is good. I still struggle with guilt and depression over my pain meds, although my doctor and the pharmacist tell me that I'm not an addict and that I have nothing to be ashamed of. I can't help but wonder if other people have to take all these meds too...or am I taking too much? I can't help but wonder how badly my bones are eroded--one of the xray techs noticed it before I even knew I had RA, but quickly refused to say anything when he found out I didn't know about it already. My bones were already mishapen and abnormal from the AMC. Now some days, my right shoulder freezes up so badly I can't change my own shirt by myself. My doctor still hasn't manage to find me a rheumatologist who will take my Medicaid--she tells me I should sign up for Medicare as well. Yet the government is cutting back on everything....but I can't let myself think about these things or a black panic wells up and threatens to swallow me whole.

I try not to talk about what I'm going through too much--I don't want to depress people and seem like a whiner. The hardest thing right now is trying to be there for my family and friends and fiance. I hate being so unreliable--my stupid body is so fickle. As it is, it already ruined my perfect 3.98 GPA. In my last semester, when I was waiting for my diagnosis, I made two Ds by the grace of my professors. I dragged myself to the finals with barf-bags, but I hadn't been able to do the research and write the papers. It was only through the grace and sweetness of one of my professors that I didn't curl up into a little ball and stop eating. She talked to me in her office, told me not to give up and sent me to the college counselor. He said he didn't know how to deal with people who had chronic illness, but he helped me try to set positive goals for myself and keep my thoughts positive. That professor, Professor Pizzola of the English dept, got me through to my diagnosis--she and my mother and the counselor. I owe her my degree--I would have given up if not for her.

Still, sometimes I think about my life before RA--my old profile picture was from May 2008, before my diagnosis and before all the pain--I was newly engaged, almost graduated from University, and thought I had my whole future ahead of me. It looks a lot different now.

I'm learning to be a lot more patient; to take things one thing at a time--and to expect less from myself. I'm still working on that one. Life goes on...

Posted by Rachel at July 20, 2011 09:33 PM

dear, dear rachel...

as i read this, i found myself wanting to say all sorts of things to comfort you and tell you you're not alone, that you are understood, and that i wish there was something i, personally, could do to take away the pain. there was too much to write, though, and i welled up with stinging pain trying to find the right words without overwhelming you. of course i have not had the conditions you have had/continue to have, but i have had others that put me in exactly the same place emotionally, as you know, and i, too, have a high tolerance for pain, which leads others to think that i'm not so bad off. it's so hard for people like us, rachel, and i know it feels like you're alone a lot of the time. i'm so glad we happened to meet, because i'm able to show you that you're not alone (and you show me the same). you never sound whiny to me - if you ever need to vent, don't be ashamed to let it out. i am always here. you don't have to shoulder your burdens alone.

your sister in pain, and hopefully someday, relief from it,

Posted by: melissa at July 20, 2011 10:58 PM