We’re in the middle of a sweaty, suffocating heat wave right now. Just running across the street to grab the mail this morning was miserable. So, I’d say this means no bike rides for me anytime in the near future. We’re supposed to have temperatures in the upper 90s at least until Wednesday, I think. The dew point is also extremely high, reaching tropical levels (75 deg. last time I checked online). I know talking about the weather is boring and I should be grateful it’s not snowing right now (I am). I do love summer yet the heat and humidity is hard on my body and causes a definite increase in swelling and pain in my joints. My ankles especially are both puffy and very sore to the touch. I’m sure I would be better off living in a drier climate, however Minnesota is home for now – with its sultry mosquito-filled summers and bone-chilling endless winters. Today I’m mostly annoyed that I can’t go on a bike ride or just sit in the backyard reading a book without melting into a puddle on the patio.
In other RA-related news, unfortunately the steroid injection I had in my right ankle almost two weeks ago did not help. I had a feeling it wouldn’t, because I suspect that the problem is in the soft tissue of my ankle and not the actual joint itself. The numerous other cortisone injections I’ve had in the past never helped, but I was really hoping it would be different with this one. I’m dreading calling my orthopedic doctor again about this because I’m afraid he’ll say what he said the last time I saw him in December after he looked at another new MRI scan – “I don’t know what to do.” What DO I do next? Try the Mayo Clinic again? The ankle isn’t that complicated of a joint (not compared to the wrist, for example); I just don’t understand how no one can figure out the problem. I’ve been dealing with these bad ankles since 2005 and it’s come to the point where I’m about ready to have the right one fused. I don’t want to do that but I don’t know what else to do to ease the pain. Does anyone have any insights or experience with this? If so, I’d really appreciate your input.
It’s about a small-town “renegade” doctor who is passionate about her job and lets patients pay with whatever they can afford, whether it’s cash, check, or eggs from the farm. My friend told me about the story this morning which is perfect timing since I’m driving up to Osakis tomorrow to spend the weekend there. I’ve loved this little town for years and it’s great to see one of its residents making the news for doing something good for the community. As a patient myself, who is continually fighting against rising health insurance costs and just the health care industry in general, Dr. Wasson is certainly a breath of fresh air.
Today was a really beautiful, perfect summer day. However what I had to do this afternoon did not bring me carefree summery happiness. This afternoon I went to CDI to get another steroid injection in my right ankle’s subtalar joint. At this point I can’t even remember how many injections I’ve had in this poor battered ankle. Four years ago I had synovectomy surgery on it which barely helped. I keep joking to various friends that I should nominate myself to be on that show “Mystery Diagnosis.” After six years of “mystery” pain and swelling in both ankles and countless trips to various doctors and foot/ankle specialists (even a trip to the Mayo Clinic in Rochester which yielded zero results other than a motel bill), I feel ready to give up. But I don’t want to give up. I want to be able to walk and just stand on my own two feet like a normal healthy person. The good/bad news is that MRI scans continue to not show any damage or active inflammation. That’s great, but why does my ankle hurt so much? Just looking at it you can see very obvious swelling.
So last week I decided to call the orthopedic doctor who did my surgery in 2006 to ask again if there was anything that could be done to relieve the pain. He ordered a fluoroscopically-guided injection which is what I had done today. Basically, the radiologist uses an X-ray/CT scan to locate the exact location of the joint and where the steroid medication will be administered. Luckily I didn’t have to wait long once I checked in and filled out the annoying paperwork (that I have filled out a million times already for MRIs). I was escorted to a procedure room and was then told to climb up onto the table. The doctor instructed me to lie on my left side with my right ankle facing up. He washed and sanitized the area with alcohol and disinfectant. Then he inserted the needle with a general anesthetic to numb the joint. That hurt pretty bad since my ankle is already very tender and sore to the touch. After the anesthetic was administered (and I was silently gripping the sides of the table trying to not wince from pain), the doctor injected the contrast dye. This felt very strange and despite the numbness, I could feel the liquid of the dye worming its way into my joint. Then, with the aid of the X-ray and the dye, the doctor injected the steroid. “That’s it, you’re done.” Thank God. Once the needle was out I felt a lot better and proceeded to sit up and then hobble off of the table and limp back into the waiting room. I’m really crossing my fingers that this will work and I will finally have some answers about this stupid, frustrating ankle. The technician told me that it can take up to a week for the medicine to really take effect, so I need to be patient. I thought to myself – yeah right, more patience. It seems no matter what is going on with my RA – waiting for steroids to take effect, waiting for flare-ups to go away, waiting for medications to get covered from health insurance, waiting for my next doctor appointment – this disease is constantly testing my patience. Some days I’m amazed that I have any left.
I can already tell this is going to be a long day.
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.
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.
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).
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.