This is why we can’t have nice things

Whelp in keeping with the theme of my life. Something weird happened with my health. I have a physical with my GP in Texas once a year and we make believe that my body works like a normal persons. Well this year we found something cool in my blood work. In the past I’ve been pre-anemic but as of this year I have big kid anemia, which isn’t a big deal unless you can’t take iron supplements due to an unidentified GI issue that causes you to vomit EVERY kind [flinstones chewable, slow FE, bifera, etc...] and those are the type made for people with sensitive stomachs! So I get to go to an oncologist/hematologist who works with individuals such as myself, my GP’s assistant mentioned the possibility of an iron IV and honestly I’d be fine with that, at this point I will do whatever it takes to get myself even a step closer to feeling borderline normal [or normal for me anyways].

 

In other AWESOME news, I leave for London in 4 weeks!

Balancing Act

For quite a while I’m had issues with my balance. It’s never been enough to warrant serious concern but just enough to be noticed by others. I’m especially bad with clipping my shoulders on door frames and corners. I’ve heard that balance issues can be related to fibromyalgia so I started looking into it more and found several studies that support an overwhelming difference between an individual with fibromyalgia’s balance and the control group. If I could just find a fibromyalgia specialist I could ask them about this! I’m a little frustrated because on days that I feel unsteady I have to use my cane just in case, which makes me feel really lame [haha, get it?] but really. I feel that is I had a fibro specialist that my unanswered questions would at least be slightly fewer in number. Anyways, this is just my slightly angry rantings at a lack of understanding of my current predicament.

Decisions

I will make this post brief as the dose of Vicodin that I finally caved in to is kicking in about now. I have decided to attend the 3-week long Pain rehabilitation program at the Mayo in Rochester. At present it is scheduled at a time that absolutely will not work, I am hoping that they will have appointments in October as there would be a lull is schoolwork around then. While the thought of missing 3 weeks of school appalls me to my core, the reason I am part-time this year is so that I can get my health under control. A fact that my best friend and roommate pointed out. The Lyrica is helping a lot but I’m still having some intense pain, the Tramadol barely takes the edge off and I’m trying to stay off of narcotics if I can hep it. As I am trying to find a job this trip may prove problematic in that regard, but I really need to go and will find some way around it. If I have to work a terrible job I can just quit [fast food maybe?] and then get a decent job upon my return so be it. Point being I WILL MAKE THIS HAPPEN. I am going to discuss it with my family very soon.

Breathe Easy

As some of you may remember last summer I tested positive for tuberculosis and went through a particularly nasty round of drugs [Isoniazid and Priftin]. I had already scheduled an appointment with my pulminologist [lung doctor] regarding my alleged ’reactive airway disease’ or RAD. I hade an appointment with said doctor today who assessed my lung function and checked up on my TB status. GOOD NEWS! My lung function is at 117% [not sure how that works], my X-ray was TB free and pretty awesome looking. I have been released into the wild with a rescue inhaler and told that I didn’t have to come back and that my yearly chest x-rays can be handled by my rheumatologist. My doctor was actually very surprised by the level of lung improvement he saw from my lung function test, he said that such improvement rarely happens and he can’t explain it.

 

My Lyrica and Tramadol regime has continued to help my fibromyalgia, I have however learned that if I forget a dose of Tramadol my body turns on me. I’m a bit worried abut the long run regarding my Tramadol use but for now as long as I stay on schedule I think I’ll be fine. I’m on the hunt for a rheumatologist closer to OSU that works with fibromyalgia and RA.

FREEDOM

Today I went to see my rheumatologist. At the beginning of the appointment I was straightforward in telling her about my trip to the Mayo and what they had told me regarding my lack of RA symptoms and the presence of Fibro symptoms. She was very attentive and listened to my whole spiel. I asked if this meant that we questioned my initial diagnosis of RA and she said no, she pulled up a chart on her computer showing my total swollen joint count over time and pointed out how many swollen joints I’d had initially and how they decreased over time as we became more agressive in our treatment. She checked my trigger points and said that they had not been this bad previously and showed me a chart of my previous positive trigger points, neither of us are sure why it is suddenly worse but we agreed that continued use of Lyrica and Tramadol was in my best interest [due to the use of Tramadol I am COMPLETELY off of the Vicodin!]. Then I asked the question I have been dreading and fretting over: “Can I stop my methotrexate?” For those just tuning in Methotrexate [or MTX for short] is a chemotherapy drug that in small doses is used to treat autoimmune diseases such as RA. It is very harsh on your body and I personally have had the unfortunate side effects of mouth ulcers and nausea. In short I would very much like not to be taking MTX injections once a week. So I asked her if I could stop this horrible drug AND SHE SAID YES! I am officially off MTX! This is kind of a big deal. I then asked about my other RA medication Orencia, she said that if my RA is still in remission [which she confirmed is what happened] in 6 months that I can discontinue Orencia! BUT she was very adamant about this disclaimer, once RA is in control getting back to remission after a major flare can be hard to come back from, so from here we proceed with caution. On a positive note I begin tapering off of the NSAID Celebrax tomorrow as they think it may be contributing to my stomach issues.

Additionally I went to the ENT that my mother is very fond of to seek out help for my oral ulcers, he was very helpful and gave me MEGA oral ulcer solution with more drugs in it than I can remember [mostly used on chemotherapy and radiation patients] and some oralgel paste. They are already getting better!

You said how many shots?!

I have been being treated for ‘occipital neuralgia’ by a very talented pain and back doctor, what we have been doing up until yesterday was injecting small amounts of lidocaine into my head and neck to relieve the muscle tension leading to pain and migraines. The down side of this treatment [besides the GIANT needle they use] is that I need new injections once a month. As I live 5 hours away from my doctor this has been very inconvenient. She had mentioned another option where they would inject small amounts of Botox mixed with saline into my head and neck instead as this prevented muscle spasms for 3 months. After going through hell with the insurance [I was the first patient she's done this on in the practice she's in], I finally, FINALLY got to get them. I showed up nice and early yesterday with my best friend for support, the doctor came in and told me she would start the injections in my forehead and work her way back. I had not anticipated that many shots and had foolishly assumed it would only be 4-6 injections like it was with the lidocaine. She then slowly injected me with the botox, the fluid itself didn’t hurt but the needle going into the muscle [they go deep] makes a terrible crunching noise and hurts. 23 shots later I was done. My friend decided to take me on a trip to the aquarium as a reward for not crying once [yes I'm slowly turning into a small child]. As of today the injection sites are a little tender but overall okay. My doctor told me that the botox wouldn’t take full effect for 2 weeks, I will update as to if they help.

 

I am back in Dallas and am in the process of attempting to find a new rheumatologist, the thing is I leave Texas in 2 weeks for school and usually any doctor who has openings that soon isn’t worth seeing. I see my original rheumatologist tomorrow and am  anxious to see how she reacts to my new diagnosis. I hope she accepts in and agrees to treat me as currently my neurologist [who made it very clear that she is not a fibro specialist] is doing the best she can and has been writing me Lyrica and Tramadol. I’m overall better but there a certain points that are so bad that I feel the need to try and dig them out with a vegetable peeler [you'll understand that someday when you have deep, shooting pain].

 

P.S. I have realized that in an ideal world I would live in a quiet room with minimal [soft] light that was roughly 64 degrees.

I’ll be back [Mayo 5]

Alright gang here’s the deal I went to the “teen PRC [pain rehabilitation center]” as referred by my doctor. I met a very nice psychologist, we discussed my situation and he told me that pain rehab was really all there was left for me to do. I asked what kind of doctor I needed to find to perhaps prescribe me something weaker than Vicodin (Like tramadol) and who would be dealing with my Lyrica. He didn’t really answer me on that front which I found frustrating. He did however pick up on my personality and said that he suspected that I only had two speeds, 110% or 0%. He told me that I needed to start accepting my limitations and need to slowly work my way back to normality. He said that he felt going to the specialty fibromyalgia program would be a mistake as they mostly dealt with diagnosing followed by a two-day cram session of how to cope. He instead referred me to the Adult PRC program (he said he felt I would connect better with adult patients, which is right) that is 3 weeks long and very intensive. He then told me that it was booked solid and that I probably would have to wait a decent amount of time. We went to scheduling where they told me that the earliest they could see me was late August. In short there is no way for me to do this without missing school. I’m not going to lie it was really disappointing to me that there wasn’t more that could be done with my case for the time being. Hearing that I had to wait for more help made me want to cry but I know there’s not much else they can do and that it isn’t anyones fault.

Pending a set date I will be returning to Mayo Clinic for PRC in the fall.

Sorry I don’t have better news :-/

Adult PRC: http://www.mayoclinic.org/pain-rehabilitation-center-rst/threeweekprc.html

 

My MRI results are in and confirm no synovial inflammation they did however find “a small ganglion cyst just medial to the ulnar base of the 5th finger proximal phalanx”, I’ve had a cyst in my wrist before so it’s not really anything new.