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Life As We Know It

945139_3182536500269_984301105_nRight after I got home I went to my rheumatologist for a check-up following my trip across the globe. After doing the normal check up she ran a few tests and FINALLY confirmed what the Mayo Clinic had determined in May, I am really in Remission! I am very excited to finally go into winter without active RA as I LOVE the cold but it always caused my RA to flare up. To be absolutely honest, I was and still am so grateful to be in remission but at the same time I am having a hard time adapting. I hadn’t realized how much of my time and energy was spent on being sick. To someone without a chronic condition that may seem like an odd statement but in my own personal experience I spent so much time looking up new treatments, scheduling appointments of all kinds, physical therapy, trying to save energy [spoons] anywhere I could, not going out with friends, or just downright feeling crummy. I would like to remind everyone that 3 years of my life were spent that way and while I do still have very active Fibromyalgia, it is GREATLY helped by the Lyrica. This massive change in my life actually sent me into a depressive state, luckily someone close to me realized something was off and got me to talk to them about what was going on and came to realize I was struggling with the fact that my state of being was changed. I am still working on accepting what my life is like now that I am doing better, which has been hard because this had hit me when I was 17-20 which is when many individuals truly find their identity, apparently my identity was a little tied up in being the sick girl who pushed herself too hard. Since realizing this I have actually gotten much better and am now able to really appreciate being better. To any CI patients out there who are in a similar place right now I want you to know that you are not the only one who feels this way and you do adjust. Because I am doing better now my life feels much more balanced, I am going to school, working a real job, and am able to have more healthy relationships with the people around me.

On another note my right shoulder has been painful for the last few years and it had been attributed to the RA. Since I am in remission my rheumatologist said it was a ‘mechanical issue’, she thinks it is hypermobile in a bad way or that the tendon is messed up. Either way I need to see a orthopedist about it, I have already done PT for it twice though so the referring doctor actually sent me to a surgeon. I DO NOT want shoulder surgery, the recovery time alone is enough to make me hesitant. I plan on asking if he has any suggestions other than PT, if not I guess I have to grow-up and get it taken care of as it does seem to be getting worse. I see the doctor for the consult on the 11th and really hope it goes well, the same day I see the AMAZING doctor who has been giving me botox injections for my horrible migraines [caused by occipital neuralgia, caused by fibromyalgia] for my 6 week check up. The shots have been helping me more than any other treatment tried on me in the past.


You said how many shots?!

Posted on

Inevitable betrayal fireflyI 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.

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