Life with a Flare

Okay guys I have been meaning to post this update but I have had no time to write it. Last week I had an appointment with a new pediatric rheumatologist , usually it is a long wait to see one but there was a cancellation so I got in really fast. During the appointment I was diagnosed with two things. The first is Enthesitis, with is an autoimmune disease were the the things that attach ligaments and tendons to the bones in joints become inflamed, it can also cause Uveitis. The first line of treatment is NSAIDs like like Voltaren but I had to switch to Mobic because I was having a lot of GI issues, so the new one will hopefully have less side effects. At this point we a re sticking to NSAIDs because it is hard to tell how severe the disease is because of the 2nd condition I have. The second thing is Amplified Musculoskeletal Pain, this is a nerve condition that is a result of the fact I have had untreated chronic pain for so long. Basicly my nerves no longer know how to turn off pain si...

First some exciting news, I get to wean myself off crutches! Basicly my PT has decided I can make my own decision, so right now I do not use them at all in the house and bring them with me when I go out, tomorrow I will have a day with a lot of walking but then I plan on definitely being down to one or none all the time. Heat then Ice and Stim @ PT (my favorite parts) Thursday I went to the rheumatologist. She thinks I had gastritis (which is the inflammation of the stomach) caused by long term NSAID use, which is what caused the horrible stomach pains. Currently NSAIDs still seem lie the best treatment option since we finally had found one that works. She decided to switch me from Prilosec to Prevacid for the side affects and restart the Voltaren, so today was the I took Voltaren with Prevacid for the first time and hopefully I will not get gastritis again. My rheumy thinks the two things that are my biggest problem right now are my crutches and how lax my joints are. She ...

This past week has been really rough, although my hip is doing really well. Last Tuesday I had my 2 week post op appointment. It went pretty well, everything looks good. The biopsy of the inflammation came back negative for RA. The OS mentioned I toe in when I walk, something which my PT has been telling me for 2 years. Still had to stay at 50% weight bearing for another week (which is disappointing because I thought since I started out with more weight on the leg then last time around I would get to wean sooner not later). I also got a letter to send to my insurance company to try to get them to cover more PT. Wednesday I woke up extremely tired. I took a shower and then went right back to sleep, I even fell asleep in the CPM, which I have tried to do before but never been successful unless I was still on narcotics. I woke up just in time for my weekly PT session, where I noticed my right shoulder hurt and my left ankle did as well. Thursday I went to college orientation, I had ...

This morning I woke up to a red painful swollen wrist. My right wrist was not happy or useable for the better part of the morning. Of course my mom wanted to make a rheumatologist appointment for this week but I really did not think it is worth it. Since I am now in the 2 week period before my hip surgery I can not take anything but Tylenol anyway (no voltaren or fancy cream), so there is not a whole lot that can be done. We finally settled on me going to my GP (for the 2nd time in one week as I had a pre-op appointment with him on Monday), and I took a picture so I can show my rheumy at my next appointment. I managed to get an appointment at 11AM because my GP was in the office this Saturday. By the time of the appointment my wrist looked pretty normal, although I had the picture so he could see something was up. He had it x-rayed just to rule out any issues non rheumatology related, and as we both guessed the x-rays came out normal. My Lovely Wrist this Morning I was left wit...

My new NSAID cream came in the mail today, it is very fancy and actually contains 5 active ingredients. What is really cool is it came with a sheet that explained how each one works. Note: most of the below explanations come from previously mentioned sheet (which is why they sound so intelligent. Diclofenac: (The brand name of the oral from in Voltaren, aka my favorite NSAID cause I am cool enough to have a favorite NSAID) If you haven't guessed by all the stuff in the parentheses, it is an NSAID, and as the cool sheet says, it works by blocking the arachodonic pathways of the inflammation ( I really wish I actually knew what this meant, maybe I will google it) Baclofen: A muscle relaxant and anti-spasmodic that reduces the neurotransmitter release from pain receptors generating ectopic impulses. (I understood everything except the second to last word, not bad) Cyclobenzaprine: A muscle relaxant that helps control muscle spasms and tightness residing in the area of localize...

Yesterday afternoon I went to the rheumatologist, then today I had x-rays, then OS, then the PT from HSS. I will start with the rheumy appointment. It was actually pretty uneventful because I am doing pretty well right now finally. The one thing we discussed was lowering the dose of Voltaren because of some GI issues. I am pretty reluctant to mess with the Voltaren at the moment, between my internship at a preschool, my nannying job, and prom coming up I really do not have the time/energy for a flare (not that it makes a difference). Since I have to stop 2 weeks before my hip surgery anyway I am waiting until after then to change anything. I was also given copies of my blood work from a week ago to give to the OS, so with any luck I could not have to get more pre-op blood test. Apparently they need blood tests from 30 or less before surgery, so the last test misses the window, but it was worth a try. At my OS appointment appointment we talked about the issues I had with the last ...

I have been writing less frequently because I am too busy living life. I have had very little pain since starting Voltaren. I must say I much rather be living life then just be blogging about it! Even my hands haven't been getting painfully cold or turning colors lately! This weekend I went to a Temple admitted students day. It was so much fun to see the campus again  and even more exciting since I will be there next year! The fact I am going to be in college next year has not totally sunk in yet. The only think I am freaking out about a bit is orientation, since freshman sign up for their courses when they go to orientation. The earlier you go the better selection you have. The assistant dean of the College of Education was encouraging me to go to the first or second one. The first one is June 27(or that weekend anyway) and I am having surgery on June 24. I was really hoping to wait till after I was off crutches, but after talking to the assistant...

In the past two years it seems like my medical issues have become part of my identity. I am the girl always on crutches or limping, the one who doesn't participate in gym. No one asks where I am if I am not it class, they know I was probably at a doctor's appointment or if I come in a period or two late my friends know my shoulders are probably having a bad day so I had to take a bath to get rid of morning stiffness. I am not sure when it happened but people are now more surprised when I can walk then when I can't.  Sometimes it is really hard for me to move past the medical parts of my life, because it does affect all the others, but it is important that I do. I try to do everything I used to do, which is hard but aside from athletic activities I have done a pretty good job managing. I can't always do everything I want to but I prioritize.  There are a couple things I refuse to let my health affect. Debate is something I don't let get affected, since I have ...

Today I had a busy day at HSS, 1st was a my 8 week post op appointment with my OS, next was a PT appointment with one of the HSS hip PTs, then we went to see the rheumy, and finally I had shoulder x-rays. The OS appointment went ok. The hip part was good, the right hip is doing really well and I scheduled surgery for my left hip, which is not as great of a candidate for surgery (not as clear cut of a case) but we are taking the fact my right is doing so well as a predictor that hopefully. That will be on June 24, two days after I graduate from high school. I was less happy about the knee situation, he said he thought it was a combination of referred pain from my hip and an autoimmune issue so besides the PT he prescribe the rheumy should really be dealing with it. Next of was the PT at HSS. This appointment was not as horrible as I thought it was going to be, but pretty pointless. I was just given a few more strengthening exercises. The PT gave me a pri...