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Tag Archives: RD

Tis But a Scratch

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So I recently drove down to Texas to see my rheumatologist for a checkup. It was a bit discouraging to say the least. Right off the bat she told me I looked a little worse for the wear between my dark under eye circles and super sexy hobble. It would appear that the stress of my current course load combined with life has made for one hell of a flare. She gently suggested I take some time off of school to try and get my health back on track. I informed her that as someone in the 6th year of a bachelor’s I was going to graduate this May even if it killed me. I told her I just need to make it 7 more weeks, then off to student teaching. We did find that I am developing some hip problems on the right side. She is concerned about the potential of a labral tear developing due to the amount of stiffness and clicking. To me it almost feels like something is stuck in my hip socket, sort of like my joint has a small marble or some sandpaper in it. The rheumatologist said that we may need to look at treating it if it doesn’t improve in the next few months. She didn’t go into what treating it would entail, honestly I think we need to backburner the issue for now. The largest issue in my world right now is the crippling exhaustion. I’m back to sleeping 12 hours and feeling like I have only heard rumors of sleep. It is possible that this is tied to finally being off of my prednisone or me discontinuing my thyroid treatment [due to accidentally being over-medicated]. The current plan is to drag myself through this semester and meet with my rheumatologist in December.

GOOD NEWS [because we need some]: We figured out what those terrible side pains are! It was caused by the intercostal muscles on the right side spasming. We are not exactly sure as to what caused them initially, but an extremely talented massage therapist has been able to get them under control. More or less they now appear to be gone! I REPEAT GONE!

My friends and family have been really encouraging despite all of the current weirdness. They are seriously the best and have helped me stay afloat this long ❤

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Because I’m Crazy [Pre-PCT 1]

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I have decided to do something absolutely insane, allow me to explain. I have decided that I will be hiking the Pacific Crest Trail [PCT] roughly a year from now. This trail goes from Mexico to Canada, is 2,650 miles long and takes 4-6 months to complete on average. This is about the time that people say “But what about your rheumatoid arthritis [or fibro, or sjogren’s, etc…]”. To which I say, “doesn’t that make it all the more impressive”. I have done my due diligence to ensure I take care of myself on the trail. I have spoken with my rheumatologist about how to get biologics on the trail. We decided switching from my Actemra IV to Actemra subq may be the way to go. She is fully supportive of this endeavor and is amazed with my turnaround. Considering 2 years ago I was so sick I wanted to die and practically crawled to Mayo Clinic, this is nothing short of amazing. I read about the PCT a few years ago and thought, “I wish I was healthy enough to do this”. Now I can, and I will.

“Why now?” is also a question I have been hearing a lot. Well, about that. My RA/RD is currently under control and I intend to take advantage of this. Additionally I will be graduating next May with an education degree. In Oklahoma. During a hiring freeze. So, due to the fact that only rural districts are hiring [which you always get stuck in] I will be taking off for 6 months and praying Oklahoma can figure out it’s current budget crisis. This is the only time in my life that I have limited responsibilities, I only have my husband to worry about.

Now they say you only need 12  weeks of training before leaving for the trail. Then I thought to myself 52 weeks of practice seems pretty good too. I have begun my doing 60-90 minutes of cardio 4-5 times a week and began resistance training to strengthen my core and back. I’m 4 weeks into this training and so far my body has held up with no, I repeat NO issues. My calves are so muscular I could probably just hop into a low flying helicopter*. My amazingly kind and understanding husband will be mailing me my oral medications as I continue down the trail. I have started making my own dehydrated meals, can make a fire out of anything, and learned how to layer like a pro. I will not be unprepared. I will continue to update as we get closer to my departure.

PCT (1)

Hart’s Pass, Washington

*Please do not attempt this.

 

 

 

Oral Fixation

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Similarly to how smokers crave oral stimulation long after they quit individuals who have used oral pain medication for long periods of time have the same issue. Some take up smoking, drinking copious amounts of soda, or eating when in pain. This is when an oral fixation becomes a ‘pain behavior’. For those of you who are not familiar with the phrase, a ‘pain behavior’ is an act that an individual partakes in when chronic pain is flaring up. It can be anything from rubbing the site of pain to compulsively eating. I am one of the lucky ones who has manifested with compulsively eating when in pain. In part it is because of my brain thinking, “Oh you want pain medication, what else can you consume instead? FOOD!” This has caused me to gain a decent amount of weight since Mayo PRC, an issue that I continue to want to address yet continuously fail to. This is in part because I feel that if I didn’t have this pain behavior that I would easily get sucked back into the constant pain medication cycle. I mention this because so few people talk about this aspect of chronic illness, I only know a handful of other people in similar positions to mine. In the not too distant future I hope to get a better handle on the ‘food as a pain behavior’ thing. If anyone has had any similar struggles I am more than happy to receive advice on the issue.

Something Wicked This Way comes

courageWeird news everyone, in the last month I have had the pleasure of not 1 but 2 steroid packs! Until recently my medication cocktail has kept my RA/RD under control to where it wasn’t a constant issue, this may no longer be the case. My rheumatologist and I tend to use steroids rarely on me as I am overly sensitive to them and get mean, nauseous, and hungry very quickly [not fun]. The fact that she has just started throwing steroids at me concerns me, what worries me more though is that my joints are beginning to feel as though they are being ripped apart again. For those of you unfamiliar with this sensation imagine that there are weights you can’t drop that are pulling your shoulders and hips in ways they do not want to go, but all over, all the time. This could in part be due to my insanely heavy workload at school and the intense stress that comes with that. I’m meeting with my rheumatologist in a month to discuss our options. I have already missed more class than I had hope to for the entire semester, it’s not a ton but it’s more than I am comfortable with. What concerns me more is I am not controlling my pain as well as Mayo Clinic PRC taught me to. There is unfortunately a little seed in the back of my mind that toys with the idea of taking pain medication just until I graduate. Fear not, I have not forgotten how groggy and mean I was while on Tramadol and Vicodin. Nor have I forgotten the lovely sensation of withdrawal, not something I would recommend. Hopefully my rheumatologist and I will be able to alter my treatment plan and possibly switch me from my current biologic agent [Orencia IV] to another biologic. At this point in my treatment we have tried the biologics Humira, Remicade, and Orencia. Orencia has by far been the most successful in terms of effectiveness and minimal side effects. I will post an update on this issue once I have met with my rheumatologist.

REQUESTED BELSOMRA UPDATE:

I have now been on Belsomra for several months with no side effects whatsoever, we did have to increase my dose from 10mg to 15mg. All in all it has been highly useful, I continue to recommend it to people who suffer from insomnia. The only thing I have to report is YOU MUST allow yourself 7-8 hours after taking your medication before attempting to function, it makes me super groggy whenever I cut the cycle short. Other than that it’s been smooth sailing, for any further questions feel free to ask me in the comments or on the RA Supergirl facebook page.

Why I Joined the RPF [and you should too]

what is rheumatoid diseaseSo in honor of Rheumatoid arthritis [rheumatoid disease] awareness day on 2/2/15 I finally joined the Rheumatoid Patient

Foundation or RPF. Now the RPF was formed in 2011 shortly after I myself was diagnosed. I haven’t had the funding until recently [or the motivation] to officially join until today. Rheumatoid Arthritis is sadly a very misunderstood disease, I myself had no knowledge on it whatsoever when I was first diagnosed. Almost everything I know about RA I learned from the Mayo Clinic website, medical journals I dissected, and fellow RA bloggers. I have been faced with many frustrating encounters with people who were not willfully cruel but simply not educated in what RA really was. So few people not affected by RA understand that RA is more than arthritis; it’s waking up in the morning with pain and stiffness consuming you, it’s constantly being concerned about the degenerating not only of your joints but also your heart and lungs, it’s constant fevers and brain fog, it’s fearing what you’re life would be without health insurance, it’s being afraid of winter [and other triggers]. RA changes how you see yourself and the world around you, many things become risk calculations, you alter your life and alter what others expect from you.

The thing I most love about the RPF is that while it is a young foundation it perpetuates the sharing of information and promotes support within the autoimmunity community. Many individuals who have not been personally affected by RA underestimate the impact it has on someone’s life [especially in it’s more severe forms] and the RPF aims to remedy this. I’ll get off my soap box now.

For more information on the Rheumatoid Patient Foundation or to join go to:

http://rheum4us.org/

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