July 21, 2010
Rheumatoid arthritis is such an obnoxious, sneaky disease. Example: I went to bed perfectly fine last night (well, my normal “fine” that is). This morning I was cruelly awakened by a sharp stabbing pain shooting through my left knee whenever I moved it. My initial thought was, oh no…not this again. I had had this happen once before when I had to go to the E.R. because the pain was so intense. Luckily this morning I was able to carefully roll out of bed without passing out from pain. I hobbled into the living room and noticed that my left knee was swollen compared to my right one. So now, here I sit writing this blog with a bag of frozen peas icing my knee while I wait for my rheumatologist’s assistant to call me back about a plan of action. I’m pretty certain that the doctor will order me to go back on prednisone. Hopefully I won’t have to go into the clinic today. This flare-up is especially frustrating because today would be Day 3 of me being prednisone-FREE again. I so badly want to get off of that medication and STAY off of it. I’ve been tapering down/off for the last three weeks. If Dr. B puts me back on it, we’ll have to start the entire process over again. However, I’d rather take prednisone right away if it will knock out this flare-up. Anytime something like this happens, I get extremely nervous, of course, that damage is being done to my joint and that it will never return to normal.
Another depressing thing about this flare is that I’ve recently been enjoying riding my bike a lot. I’ve been trying desperately to lose weight by biking but have also come to really love it and look forward to my daily rides. I’m assuming that there will be no bike rides for a while thanks to this knee.
RA is really a jerk sometimes. It obviously doesn’t care that I have two medical appointments I need to go to today. Nor does it care that I also had to call in sick to work for tonight. I know life is full of surprises and interruptions for everyone, chronic disease or not. However I’ve noticed that my R.A. seems to get a kick out of rearing its ugly painful self in my life when it’s most inconvenient. It’s a very helpless feeling when a disease controls you, forces you to lie around with a bag of peas on your leg when you feel perfectly fine otherwise, and stops you from doing the things you love – like those wonderful summer bike rides.
April 30, 2010
I’m driving up to St. Cloud tomorrow morning (EARLY! auuugh…6:30) to take photos for the Arthritis Foundation. There’s an arthritis fundraising walk going on there, similar to the annual one in the Twin Cities and the JAM walk I volunteered for in March. It’s a really nice course/path by the river and I’m looking forward to it. I just hope I can drag myself out of bed and get there in time. I am NOT a morning person, and I’ve had to wake up super early every day this week for Census training. It will be worth it though. Let’s hope I get some good pictures (I’ll post them on here sometime soon, probably).
Sleep…sleep…I JUST WANT TO SLEEP. uhhhhhh.
And my body is hurting worse as I wait to get accepted for Remicade assistance. I worked two hours this morning for the Census and then 5+ hours at Dan’s typing/data entry. By the time I left there my wrists, hands, and shoulders were throbbing. My right hand is starting to swell, too, which is worrying. I just hope my application with the Health Well Foundation goes through next week. Why must these things take so long? I need my drug now! I refuse to go back on prednisone.
ok, goodnight invisible readers
April 28, 2010
Spring is finally here, it seems, and I should be joyous and giddy and rolling around in the grass with happiness. Right. I would be skipping through the dandelions right now if I weren’t so exhausted from working two jobs and trying (unsuccessfully so far) to get ready for a fast-approaching art show/event. Dealing with large medical bills that keep pouring in and problems getting medical assistance for the Remicade infusions I desperately need are also huge weights upon my mind and body. (Sorry if this isn’t a very cohesive post, by the way, but I’m just trying to type out the mess that’s jumbled in my brain at the moment)
I just started a new Census “operation” and I’m in training this week. This is the fourth Census job I’ve worked on since last year and the training is the same as all of the others – HELL. And by hell I mean boring as hell. I’m not entirely sure if hell is boring, but Census training is definitely a form of slow tedious torture which seems like hell to me. It also doesn’t help that I sit next to an irritating blabbermouth woman who watches me like a hawk and constantly asks the leader, the class, and me stupid questions (such as demanding to know what I’m eating for lunch every day, among other things). By the time I escape for the day my head is about to split apart and all I want to do is go home and sleep for a week or two. But no, then I must race to my evening debt collection call center job for another four hours spent being bored out of my mind with a few interruptions from people swearing at me over the phone. This is not my “dream job” either. My tension headaches have returned and my fingers are starting to swell a bit and become painful because I’m due for my next I.V. infusion. I’m actually getting really worried about this but what can I do? I have no choice. I cannot afford to pay almost $1,000 out-of-pocket for this treatment. I’m currently awaiting another medical assistance charity/foundation to review my application to see if I can get assistance from them for Remicade. They’ve helped me out in the past, for which I’m truly grateful, yet I’m reminded once again how they have a bad tendency of screwing things up. My application is now being held up because they apparently have not yet received the form from my doctor. After several phone calls, I was told my doctor DID fax it to them already. So. Is it lost? Do they not know what they’re doing? Was it faxed to the right number? So frustrating. I have to call there yet again tomorrow to try to sort this out. I’m afraid that it will probably be June before I can have my medication/treatment again. This is stressful and worrying because I do NOT want to have to go back on prednisone in the meantime. I’ve been so happy and relieved that I’ve been able to stay off of it for the last three months.
Anyway, sorry for the bitch-fest but I’m just really fed up with everything now. I’m tired of working multiple jobs that never earn enough to pay the bills. I’m tired of fighting with my insurance company and just medical stuff in general. I’m especially disappointed because I found out tonight that I’m probably not going to be able to get the time off work I requested to get ready for the art show. I hope I don’t have to bow-out of it. I just don’t have time to do the things that I actually care about, and that’s what bothers me the most.
Ok, done whining. I’m going to read now for a bit before bed. Oh! Here’s some GOOD news – I managed to get back on my bike today quick before work and did another 4-mile ride around Palmer Lake. I haven’t been biking for two weeks now (SHAME), so I’m glad I made myself do it despite being exhausted from work. It was so beautiful riding along the trails, too, with everything in bloom.
April 3, 2010
Once again I can’t believe how long it’s been since I updated this thing. I am truly sorry, if there’s anybody out there missing me (hello? hello?). I’m still alive and unfortunately I still have arthritis and all of the joys and pains that go along with it.
So what’s new? After a seemingly failed synovectomy surgery on my right ankle three years ago, I basically had given up in frustration on the stubborn joint. Just recently I decided to take up the fight again and try to see if there’s anything else/new that can be done to help me. I’m so tired of having to limit myself and being forced to sacrifice little things that I desperately want and enjoy, such as taking a simple WALK, and being able to travel. I can’t stand to be on my feet for very long due to this constantly swollen and painful ankle. I don’t understand why it has been such a mystery and struggle to figure out what’s wrong with it and to fix it. So, I have started the “process” again of doctor appointments, X-rays, fighting with my insurance company, and having to hand over most of my paychecks to pay the bills. I just had another MRI yesterday and will find out the results in time for my doctor appointment Tuesday. I fear that another surgery is on the horizon, but what other choice do I have? I need to get my life back. Soon.
Despite all of this complaining, I do have some wonderful news that I saved for last. I have been PREDNISONE-FREE for almost two months! You have no idea how happy this makes me. Well, maybe you do. I’m extremely thankful for this and I hope it can continue for a long time.
OK, that’s all for now. I’m also very happy to be back writing on this blog. I have some exciting and positive things coming up soon with the Arthritis Foundation, but I’ll save that news for another time.
EOB = Explanation of Benefits = how much money I have to shell out for medical bills
PANF = Patient Access Network Foundation – I just found out that they are currently out of funds for rheumatoid arthritis patients, so now I’m on the waitlist. This is bad since I have an upcoming remicade infusion at the end of the month and have no way to pay for the out-of-pocket portion ($900).