Friday, December 16, 2011

Long Time. Weird Hands.

It's been quite a while since I posted here. Many times I blogged in my head. I wanted to share my musings on all kinds of stuff personal, political and spiritual. Physically I couldn't. Since my last post I have been in the midst of a flare caused by Rheumatoid Arthritis (RA). The onset of the disease was in September. My right wrist was bugging me at my job as a barista. I rested it and went to work again hoping all was well. Instead I could only make about three drinks before my wrist gave out. Initially a GP thought I had tendinitis. Two days later after the pain spread to my left wrist an orthopedist thought I possibly had RA and referred me to a rheumatologist and took a blood test and scheduled me for physical therapy. The blood test confirmed something was wrong.

Quickly the pain and swelling spread to my fingers, elbows, knees and ankles. Eventually my toes, hips and jaw became inflamed too. My doctor told me I couldn't work any job involving use of my hands... the only jobs I had really ever had. I had to quit Starbucks and decide if I was going to start my first term at Portland State University as planned. School was only days away by then and so I called PSU's Disability Resource Center. I made an appointment with the DRC and said "fuck it" and began school wearing wrist braces, stretchy fleece pants and a really good concealer (thank you MAC!).
Getting into the rheumatologists was tricky. The next available appointment was months out and the pain I had was just too much. I called the office and literally begged in tears to get in. The receptionist took pity on me and I only had to wait two weeks. This was a miracle. My rheumy (short for rheumatologist) started me on 40mgs Prednisone. After one week I had only gotten worse. So she had me take 10mgs Methotrexate and 60mgs Prednisone. Worse! After an increase to 80mgs Prednisone and 20mgs methotrexate, my rheumy decided to finally get me on Enbrel because I was not having any improvement. Apparently this is not typical. Most RA flares stop after a month or two. I've been in a flare now for over four months.

Enbrel is a once a week injection that suppresses the immune system. Rheumatoid Arthritis is really not like what one typically thinks of when they hear the word arthritis. Yes joint pain is an issue but the problem stems not from the inflammation itself but the immune system. I really think RA should be renamed degenerative autoimmune disease or something because that is what it actually is. With autoimmune diseases the immune system goes haywire somehow and attacks the person's body. For RA folks it's the joints and eventually other areas. For other folks it can be different areas like the liver (Sjogrens), skin and organs (Lupus), and myelin- the nervous system protector (Multiple Sclerosis). Because RA has the word arthritis in it a lot of folks don't realize how serious, debilitating and even deadly it can be. Thanks to modern medicine though, drugs like Enbrel work to stop the damage to joints caused by inflammation. It's a $2000 a month solution that has thus far helped take the edge off my pain and swelling. I'm still on 20mgs Methotrexate and now only 10mgs Prednisone.

So how am I? It's a very hard question to answer. Like I said the Enbrel combined with the other meds has taken the edge off, but that's all. I still can't pull on a pair of jeans. I still need a two hour nap everyday. I can't wear my wedding ring due to swelling. Physical therapy has given me a much greater range of motion in my wrists, however I still have pain and inflammation. Laundry is now done in a day instead of three, but if I attempt to do laundry, make a meal and do some other chore in a day, I have to rest all the next day. I made cinnamon rolls last week and my wrist has been in biting pain ever since. No kneading for me. Not yet.

All this is pretty hard on my ego too. My 98 year old grandma asked me if I was able to work yet and I felt ashamed to say no. I feel like folks think I'm lazy and trying to get out of working. The sad thing is I love to be engaged and would very much like to make the money our family needs right now. But I can't, at least not in the industry I was in. And because of the exhaustion, there are not a lot of jobs for folks who need to wake up late, take a nap in the middle of the day, rest, and go to bed early. I can't hand write. Typing is done in increments or by voice command (like this post). I even have to take breaks when leisure reading. I want to be better and prove to everyone that I am a hard worker but I just have to be where I'm at. Kinda disabled. Kinda sick. Kinda sick of it!

The truth is I am not lazy. Somehow through the grace of the Goddess and the support of my wife (who some days had to put my clothes on for me) and friends, I managed to get through my first term at school. I got all A's and made the President's list. It was no small task and I have to remember that. There were days I cried one minute from the pain and the next because I was afraid of getting an assignment in late. I gave up several times and had to pick myself up and keep saying "do your best...forget the rest." Sometimes things were turned in late or not completed to the level of competence I wanted. But I had to keep going even if I was afraid of disappointing a teacher or myself. In the end all my teachers believed in me, though none of them made special allowances for me, beyond what was within my disabled student rights. I am so grateful for the grades and hope to do more of the same. And I must remember at the same time, no one ever died from getting a B.

My antidepressants had to be increased and I started seeing a mindfulness counselor. The truth is I had some very hard days. Most of these last four months I have not felt like myself. My joking, dancing, goofy self. My body just hurt and the pain kept me from feeling much of anything other than that. It wasn't until I started taking Enbrel that I've had the energy to goof off some. Today I actually did my 1st little bit of impromptu performance art in front of Little Bird. But I had a few days where I just wanted to give up. Not die or anything, just have all the pain, swelling, exhaustion, and sadness go away. I wasn't trying to be sad. I think for the most part I mentally maintained a positive attitude. Emotionally though I felt something so deeply awful in my heart that waking up felt...undesired. It was at that point I knew I needed to talk to someone. Depression is common for people with RA. It's been better the last couple weeks, but I know that it's not the last time my gray friend will visit.

And let's not even get started on finances. You know I can see why so many people become homeless after becoming ill. And when a person has a chronic illness that may or may not permanently affect them... it's even harder because in order to get federal government financial assistance you have to have a variety of qualifiers that some folks, despite being very sick, don't have. Not to mention even if you do qualify they usually reject the claim the first time and take months to approve a claim. I have had to apply for various levels of assistance because I cannot work. At first I felt bad but a good friend reminded me I've been a taxpayer for years and that I in a way have paid for the services I'm receiving. If I wasn't ill I'd never ask for the help. Anyway I'm grateful because we've been able to maintain a roof over our heads, food in our mouths and utilities to use. We stick very close to a budget and this year we can't afford to give Christmas presents.

There is no way to know what the future holds. Maybe this flare will go away once and for all (though my rheumy says that is impossible) and I can become the princess rock star I always wanted to be. The reality is this is a life long disease. Even if I can get the inflammation under control, it's likely to rear it's achy head again at some point. I already have tissue damage in my hands, but no bone damage, thank goodness. My hands are already permanently changed and four of my fingers are now crooked. The loss of my beautiful tapered fingers has been one of the hardest things because I was always secretly proud of the shape of my fingers and hands. Now though I focus on what my hands CAN do. I can still make a hella good chocolate cake or bake delicious thumbprint cookies or gooey beet brownies (all from scratch mind you). I can dress myself (mostly) and get up from a chair on my own again. I can pick up my dog or cat and kiss them and I can wave hello to friends. My hands almost always hurt even when someone asks "how are you" but I don't mention it because what can they do about it? Instead I look at my now weird hands and say "I'm okay" and then do whatever I can to focus on them, because when I'm not thinking of myself, I don't hurt as much. So "fate keeps on happening" as Anita Loos once said. I'm not afraid of my fate. I accept that I have RA. Still trying to make peace with it, but at least for today, I'm okay with it.

Thumbprint cookies made with my weird ass hands


1 comment:

Jill from The Juicy Joint said...

I love the caption on these cookies because it describes exactly how I feel sometimes. It's so funny how little things like this can mean so much! Thank you for sharing. This made my night :D