Tuesday, November 08, 2011
Sometimes I look back to where my life was a year ago and can't even really process where I am at now. How do you go from running a marathon to barely even being able to walk some days in less than a year? I am doing better now and can walk pretty well almost everyday. Stairs are a little slow and I have to be more careful than ever on ice since my joints are not able to react like they used to. And sometimes my foot hurts really bad so I walk kind of funny or can't get certain shoes on.
Today I left my house to go babysitting wearing old running shoes, white socks, a dress that wasn't all the way zipped and wet hair. My foot hurt from the arthritis, hence the cushy white socks. I couldn't pull my boots on because it caused too much pain so I wore my old running shoes. The zipper on my dress is kind of fidgety and goes up the back and I didn't feel like putting that kind of stress on my wrists and fingers since I was just going to be changing in about 15 minutes. I had just gotten done with another one of my long, hot showers that help ease joint pain, which is why my hair was wet. Since I was going to be driving my car on snowy, icy roads in the dark I figured I should get my joints as loose as I could. It was a ridiculous outfit and the really vain part of me said a prayer before I left home so that I wouldn't get into a car accident and have to have some doctor see me in that goofy get-up. And from all my trips there over the last few months I know there are some cute ones!
Spent some time today looking into push button ignitions since one of the things that I do on a day-to-day basis that really aggravates my wrists is turn over the ignition on my car. Bottom line is that I can't get one installed on my car and if I want to buy a new car with that option I'm basically limited to cars that not only pricey but ugly. I can deal with expensive or unattractive, but not both.
My husband is working on replacing my sink faucet with a lever handle. My current faucet is an old knob faucet that I can't turn on when I am having a flare. A new lever faucet though could be turned on with an elbow if needed. Trust me. I've done this.
I am doing a lot better than I was a couple months ago, before I started the ridiculously high-priced, biologic, self-injecting drug that thankfully my insurance covers. However, I do feel an almost overwhelming panic when I think about how easy it is for someone to get laid off or lose their job and consequently lose their health insurance. I am not poor, but I cannot afford a drug that costs over $1500/month in addition to all the other medical bills for doctor's visits, lab work, etc. I don't think most people could afford that.
But I'm not quite ready to accept a life without distance running, or at least the occasional half-marathon. This time last year a six mile run was a nice, easy relaxing run. These days it's impossible, especially with the fresh snow on the ground. It is too hard on my knees to plow through the snow. I used to love to jog in the snow and then turn around and see my shoe prints. I could literally see how far I had come on my journey.
When I got married two and a half years ago I intended to wear my beautiful engagement ring and wedding band every single day. I got them professionally saudered together and everything. They have spent a lot of time sitting in a little pottery dish by my sink the last few months. Many days my joints are too swollen to get them on and if I did get them on I wouldn't be able to get them off. My grandma was three days away from turning 97 when she died. My grandpa, her husband of 73 years, had passed away earlier in the year, a month after he turned 100. A couple of months before my grandma died, she fell, sprained her finger and due to the swelling had to to have her wedding band cut off. I don't want that to happen to my rings.
I fly over 2500 miles to Denver to get medical care. When I moved to Fairbanks 13 years ago it never even crossed my mind that I was going to need consistent medical care that I couldn't get up here. Now, I am even more anxious to move back to Colorado so I can get help a lot easier. I'll go to the emergency room here before I go back to the local rheumatologist, but I'd rather just be able to see my rheumatologist in Denver.
And kids. Oh, kids. Never really wanted one until I thought I might die young. That was a strange night in March right before I got my first echocardiogram where they had to drop a camera down my throat. I was googling what it all meant and it occurred to me that the doctors had ordered this complicated procedure because they thought I might be that young, otherwise healthy patient that all of a sudden dropped dead and they didn't want that to happen on their watch. That's when I finally realized I didn't just have a glorified head cold or something. And all I could think was that I wish I had been a mother and that I may never get to be a mother.
Now that I know I am not going to die young (at least not from this disease), I learned that I am not supposed to pregnant while I am on this medication. The medication that lets me walk, drive, work full-time and sometimes even run. So, getting pregnant isn't an option for me right now and although I've always been open to the idea of adoption, I worry about other issues now that my health isn't quite as guaranteed as I thought it was.
By not dying young, I mean that this disease won't likely get me in my thirties or forties. Actually, it's not fatal at all, but odds are I am going to have consistent, chronic arthritis that is only going to get worse for the rest of my life. Arthritis breaks the body down faster than average, so even if I don't die young, the years leading up to my death will probably be painful with increased visits to the doctor and more attempts at different medications to try and get me to feel better. Not to be a downer, but that's just the reality of it.
This summer there were days it was so painful to walk that I would seriously contemplate whether or not I wanted to get out of bed to go to the bathroom or if I should just pee in the sheets. I always made it to the bathroom, but how does that even happen? At the same time last year I was trail running up and down hills.
I am pretty sure this is all a lot harder on my family than it is on me though. I get help and do the best I can do each day while my family that loves me has to watch me (from a distance for now) struggle and not be able to do anything about it. I think they were all really relieved when I decided to go to Denver for help, not just because I wasn't getting better up here, but because then they could see me and be more involved in me getting better and feel like they were actually doing something. My dad got me the recommendation for the hero of a rheumatologist that I currently see, so I think that makes him feel good.
I have some plans to get involved in patient advocacy, but this blog has gone on long enough. That blog will be for a day when I am happier. I am not unhappy today, nor am I depressed, but the reality of this disease just really sets in sometimes. There is always silver linings and ways to make lemonade out of lemons and any one of a hundred other corny sayings, but some days that is not what I want to think about. Some days I just need to try and wrap my arms around the enormity of it all so I can squeeze it into something tiny and manageable.