January 24, 2011
I dragged myself out of bed and rushed around the house like a maniac trying to get out the door and to my doctor appointment on time this morning. I had an appointment with my rheumatologist for which I had been waiting three months. So I sped over to the clinic, nearly ran a couple blocks and then raced into the office not wanting to be too late (I am always late…for everything). Well, lucky me, I was indeed far from late. Standing at the check-in counter like an idiot the woman told me that my appointment is TOMORROW morning. Oops. Me: “ha ha ha ha…uhhh…ok, I’ll….uh…see you tomorrow.” Duh.
So yes, now TOMORROW morning I have my rheumatology appointment along with an appointment with my endocrinologist right after that. If I’m late tomorrow I’m going to punch myself in the face.
In other news, I had a pretty good weekend. I went to see The King’s Speech which was fantastic. Sunday I puttered around in my pajamas all day drinking tea, watching public television, and playing Scrabble like an old lady. Last night I made a fool out of myself singing karaoke with my “karaoke krew,” which is always pretty awesome. I screwed up singing “Maps,” which my friend then aptly referred to it as “Craps” for the rest of the night. It was really good to get out and have a fun night at the Vegas again like old times.
RA update: Still off caffeine and prednisone (YES!). Joints feel pretty good, which is a wonderful feeling.
January 17, 2011
Not a lot is going on right now with my RA, thankfully. My ankles are painful but they always are, so that’s nothing new. Otherwise my joints feel pretty good. I’m staying away from caffeine, which I believe is helping to keep my RA under control (but who knows, really). However I am still having issues related to my thyroid and anxiety. I went to my internist today to talk to him more about this and left feeling rather disappointed. He seemed to rush through the appointment, not really listening to me that closely. He also contradicted himself in major ways a few times, which I also found frustrating and distressing. I know that thyroid conditions can be very tricky and there is no exact science when it comes to diagnosis and treatment (which is similar to rheumatoid arthritis). Every patient is different and every body reacts differently to medications and the disease itself.
So, long story short, I believe that I have been over-medicated (levothyroxine) for an underactive thyroid (slightly high TSH) which has been causing the anxiety and other hyperthyroid symptoms. I’ve been completely off the thyroid drug for about two weeks now, and I do feel better, yet I’m still having anxiety problems. I’m really hoping that I just need to wait it out a bit longer and that I’ll go back to feeling normal again. In the meantime, my doctor prescribed an anti-anxiety medication for me to take on a temporary basis. It’s supposed to be non-habit forming with no withdrawal symptoms. I hope that will start to kick in soon and give me some relief. This has all been so incredibly stressful. I think I’d prefer to have an RA flare-up rather than deal with this anxiety crap.
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).
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 16, 2007
I called my case analyst this afternoon at the Minnesota Board of Medical Practice regarding the medical complaint against my former rheumatologists. Bad news – the case was closed because the board thought there wasn’t enough evidence to justify disciplinary action. This is very disappointing, yet I’m not really surprised. Doctors are so well-protected and even untouchable, it seems. The arrogance, apathy, negligence, and complete disrespect of my doctors put me through months, years even, of hell. In a just world something should have been done to try to remedy this situation. But no. They get off without so much as a slap on the wrist and are free to treat other patients like dirt. Below is the full and actual complaint I submitted as a result of the most recent mistreatment by my doctors. Thanks to them, I was basically left stranded in France last winter unable to get crucial medication and medical help while abroad.