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Hell or High Water

Thus far all field research has proved I am immortal. Well, at least more difficult to kill than anticipated. The side effects of the Benlysta lasted quite a bit longer than anticipated. The psychological impact was a surprise for all involved, luckily I’m doing better now. Through some act of god my teachers allowed me to finish my school work over winter break [well one JUST got finished]. In fact, upon receiving my email explaining the situation they had a group meeting and figured out what needed to be done in order for me to graduate on time and finish out the semester.  I realize I am incredibly lucky/blessed to have teachers who are so willing to go up to bat for me. Not a single one asked for a shred of evidence, they took me at my word. This is absolutely amazing considering the nature of my situation and how damn weird it is. Thanks to them I was able to keep my internship and am almost done with my student teaching. This is not to say there haven’t been issues.

For instance:

  • Right now I am having hip and shoulder issues and doubled up on my Celebrex.
  • I can’t feel my hands and feet intermittently due to peripheral neuropathy.
  • Steroid shots.
  • My rheumatologist wants me to seek treatment for my hands [who has time for that?]
  • I’m still getting headaches even though I just had my Botox treatment.
  • Fevers.
  • Intermittently needing my cane.

Despite this laundry list of grossness, I need to focus on my goals. My husband and I are buying a house [we move in 3 weeks, I have packed nothing], I graduate in a just over a month, and I am fielding multiple job offers. These are all things I had at one point or another seen as impossible. These are the things I strive for, this is what beating RA looks like. I know I will never be who I was before I was sick, just like I know there is no cure. My definition of beating RA has been altered, I once thought that meant a cure. I now know that beating RA is living your damn life.

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Let It Go

i have loved the stars too fondlyWhelp this winter just keeps on punching me down. Everytime the weather starts to improve a massive cold front comes through and knocks me on my ass. This last front was no exception BUT I did do something pretty awesome yesterday, I woke up with burning/stabbing pain [as I do] and decided I was going to do life as planned. This happened to include work, a long meeting, class, and a massive test [which I got a 92% on]. I did all of them and then crashed hard. My sympathies go out to those who are also struggling after storms Hercules and Pax brought in these aweful fronts. ANYWAYS, so I started trying to get in contact with my neurologist [my rheumatologist thinks this is all Fibro no RA this round], after multiple calls I finally got a hold of the nurse and asked if we could increase my Lyrica due to feeling like I’m “in a hamster ball of staligtites and lava” [the burning sensation is new] and “brain fog that makes alzeimers look tame”. She assured me she would call me back ASAP as she talked to the doctor and FINALLY called me back today telling me that they were going to change me from 150mg to 200mg of Lyrica and see is it makes a difference, I really hope it does. While I fel like a boss when I play life on hard mode I would rather not. My most fabulous and awesome boyfriend will be with me Saturday and will be hanging out with me should the extra 50 mg knock me on my butt.

I have been attempting meditation as a way of coping with the pain [pain pills really aren’t doing anything]. In attempting to find some suggestions online I happened accross something called a  “float tank” [http://imgur.com/gallery/7rZco], it was suggested that this may help with the chronic pain situation, if not by helping the pain itself than by helping calm me. It’s a scary realization that you are literally trapped in a body that is trying to destroy itself. Knowing there isn’t a way to just walk away from the situation is enough to make anyone panic a little. On my last trip to the ER I started panicking when I realized the doctor was not going to help me and my boyfriend had to calm me down. Needless to say, I need to figure out a better way to deal with it. I am hoping to give the “float tank” a try the next time I’m in Dallas, the downside is it is roughly $85 a session… It’ll be great ya’ll 😀 I will update with news on the Lyrica adventure.

Two doctors walk into a bar…

taxidermy for the ladiesAlrighty! So I went to both my Neurologist and the Rheumatologist yesterday and we learned a couple things. First I saw the neurologist who thinks that the pain issues are related to RA, she wanted to hear what the rheumatologist said. This is the part of the story where I tell you about the longest rheumatologist appointment I have ever had including the one when she diagnosed my RA. We sat there talking about specifically what type of pain it was what I had done for the last 48 hours leading up to it, what was going on in my life, school, work, everything. The best pain descriptor I could come up with was it felt like I was in a hamster ball full of stalactites. She believes that this was a pure Fibromyalgia flare up worse than any I’ve ever had due to the increased stress of failing my first college course, my boyfriend graduating, and the intense cold in the area I live in. She did an incredibly thorough physical and showed that NOT A SINGLE ONE of my joints was swollen granted I had had my Orencia IV two days prior. We did discuss the possibility of me having a minor RA flare as an explanation and she expressed that if we found swollen joints in the near future that she would want to change my IV to Actemra [I feel Orencia is doing a great job though]. The end result of the appointment was no medication change for the time being and both doctors urging my to go to the Mayo clinic’s ‘Pain rehabilitation center’ for the 3 week program. I will be resuming my yoga in an attempt to help with the day to day pain and we will re-assess my medications in 3 months once the cold weather is really gone. On the bright side while I’m not thrilled about not being able to fix this with medication at least I’m not on Methotrexate injections again.

Keep on walking 😉

So it has come to this…

bioticsThe last month has been a little [lot] rough RA/Fibro wise. I had to be taken to the ER twice in 3 weeks [in 2 states] the combined trips resulting in 2 Benedril, 2 Morphine, 1 Torridol, 1 Ativan, 1 steroid shot, and an allergic reaction. I find this to be an unacceptable way to live my life, being in pain to the point of throwing up is rarely a good sign. Tomorrow I will be meeting with my Rheumatologist and Neurologist to discuss options with them though there aren’t many ways this could go. The most likely option seems to be being put back on Methotrexate, which I cannot express my hatred of enough. It made me so nauseous all the time. I am so very terrified that they will put me back on this drug that I’ve had a tough time sleeping for the last couple nights. More than anything I don’t want my boyfriend to have to worry about me/ see me in bad shape. I am actually kind of hoping this is Fibromyalgia related then we can adjust that medication instead of the MTX. I will update after my appointments tomorrow.

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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