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 14, 2010
MRI update: I went back to my orthopedic doctor last week to find out the results of the MRI on my right ankle. Once again I was presented with good and bad news. The good (great) news is that my ankle LOOKS fine and there is no damage to the joint or cartilage. This is a huge relief, of course. But then he told me that there is nothing he can do for me based on the results of the MRI. Tears sprang up in my eyes and began to roll down my face despite trying to control myself. How can there be nothing “wrong” when I’m in so much pain? I appreciate that he doesn’t want to do unnecessary surgery, yet I can’t understand how nobody can figure out how to fix my ankle after all of these years (the ankle problems started five years ago). So basically I left the office a crying mess wondering what to do next. Second, third, fourth opinions? Mayo Clinic again? It’s almost too exhausting to even think about much less go through. Back to the beginning, back to “square one.” All I want is to be able to walk normal again, or as normal as possible, with less pain.
In better news, I have rediscovered the joys of riding a bike and have established a goal of biking 3-4 miles a day around a small lake near my house. I went yesterday and Monday and it felt great, despite being a sweaty huffing-puffing wimp by the end of the ride both days. It’s raining right now but I still want to try to go before I work tonight. RAIN WILL NOT STOP ME! Nor will this disease, dammit.
I don’t know what I’m going to do about this ankle, but I’ll have to figure out something. I just can’t believe that there’s nothing that can be done.
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).
February 22, 2008
Once again time flew by and I haven’t written in here for a while. Apologies again to my maybe two readers (ha ha).
For the past month+ I’ve been trying very hard to improve my health and lose weight. I began an aquatic whole-body conditioning class that meets twice a week (I wrote about this once before but deleted my post in embarrassment because my instructor found this blog and told me about it at class one week. I’ll probably repost it sometime soon once I stop acting like a baby). I also started this “Colorful Choices” program through work that helps a person eat more fruits and vegetables, as well as giving up all soda and drinking a lot of water. I’ve been doing pretty well with these things, yet I’m growing more and more frustrated because I’m not seeing ANY results – not pounds-wise or in clothing fit. What is the DEAL? Do I have to run miles each day and starve myself to lose even a tiny bit of weight? I’m so unbelievably sick of this weird weight gain (from the last 5 years) that never goes away despite my efforts. I just want to be my “normal” self, 25-30 lbs lighter, which isn’t even “skinny.” I’m working hard yet the flab is hanging around (literally).
December 4, 2007
I went to an orthopedic ankle doctor/surgeon at the University of Minnesota today whom I have seen once before (1.5 years ago for the same problem). He actually referred me to the doctor who performed my ankle surgery a year ago. My appointment was at the Riverside Orthopedic Clinic and I have to say the place was hectic and an unorganized mess. Despite that I had called them multiple times before my scheduled appointment to make sure that they had received my records, there were no records to be found today. More than one woman who works there assured me the records had been faxed and received (note to self: next time write down the woman’s name who says such things). So, despite having to wait extra long because the doctor was running behind, I had to wait an additional amount of time while the nurse got my records re-faxed over to the clinic. What is the point of me even calling to assure that my IMPORTANT records and information are there in time for my appointment if I’m not being told the truth anyway and they are NOT THERE? Frustrating.
November 24, 2007
In a brief effort to improve my health and lose weight a week or so ago, I decided to try lifting these little 3 lb orange weights a few times a day, every day. At first I was huffing and puffing and “feeling the burn” at the end of each mini “workout,” but also feeling good and energized and happy that I had exercised a bit. I really hoped that this would help me lose some weight, too.
I’ve been 20-25 lbs overweight for the last 5-6 years, mostly due to medication side effects and lack of exercise (my suspicion). Feeling fat and ugly and sluggish and like a disgusting old lump on the couch only adds to the frustration and depression of having R.A. But this is a topic that deserves its own post(s), so you’ll have to wait to read about that another time.
Let’s get back to me looking ridiculous pumping iron in my pajamas in front of the TV every night. So yes, hooray! I can lift these weights and shave off some of my fat arse in the process. Good plan, right? WRONG. After about a week of weight lifting I am having an arthritis flare-up in my left shoulder, both elbows, and both wrists. At first I hoped it was only muscle soreness, but now I fear my gut instinct is true and it’s the arthritis (it’s not going away – always a good indicator). I’m off my exercise plan and today I reluctantly started taking 10 mg of prednisone to try to get this flare-up under control.
The presecription: prednisone daily, rest, rest, rest, and wait. Don’t move the shoulder unnecessarily. Don’t move the arms, in particular the elbows, excessively or in a weird manner. Wrists? Well, might as well try to not move the hands either (hands are connected to wrists, in case you forgot – I do sometimes).
What’s the next exercise plan that won’t land me in an iron body cast? Swimming/water therapy could be it. The warm water pool at the Courage Center feels like heaven; it just may be a fair enough trade-off for having to appear in a swimsuit in public. Hmm.
It really is a shame I can’t continue with these weights, though. Anybody have any other ideas?