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Lucky 🍀

xxx52bzThese past few days I have been trying to focus on the good. I am lucky that I didn’t get something worse in my IV. I’m lucky that I have the friends and family I do that support me. Honestly if I didn’t have the support system I do, this would have been a devastating hit. While this is no means ideal, it is not going to be the end of me. I have worked with all but one professor to ensure my ability to work from home and finish out the last few weeks of of this semester. My professors have rallied around me in a way I had not anticipated, for this I am eternally grateful. I owe all my professors so much for how gracious they have been regarding the situation. I am hopeful that I will be able to finish out my semester and begin my student teaching in January as planned.

Now as far as the physical symptoms from the Benlysta go, they have been pretty consistent. I have been sleeping between 13-16 hours and waking up exhausted. I have a hefty dose of headaches and nausea. I have been drinking stomach soothing tea and eating candied ginger like no ones business [I strongly recommend both for medication induced nausea]. Thankfully the chills have let up but I am still rocking a fever. Hopefully things will start to level out as my body has a chance to process this crap out of my blood. We will see how things are going once we start running labs.

 

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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 ❤

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.

 

 

 

Almost Human

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I’m excited to announce that I’m starting to be a person again. Not simply in terms of my physical health but my emotional health as well. It is difficult to explain to individuals who don’t suffer from chronic illness, but I’ll try. When you become life-alteringly ill you hopes and dreams sort of cease to exist. It sneaks up on you, sometimes over a few months, others a few years, but it happens. You begin to become “sub-human”, or at least feel it, you aren’t what you were and basic tasks seem impossible. For this reason [and others] many individuals with chronic illness become depressed. For me this has shifted, I no longer feel like a muted and broken person, I feel whole again. I largely attribute this to the incredible success of the Actemra IV along with making a conscious effort to try and pull myself out of my “sub-human” state. I am feeling so well in fact that I have begun training for an endurance backpacking trip in a little over a year [more on that later]. All of this has been to say, don’t lose hope. Even though you cannot control your health you can control your reaction to it, you either get bitter or you get better, I choose better. I’m not saying you can’t acknowledge your negative emotions on the issue, just don’t let them rule you. Ranting aside, I’m just so happy to feel functional again, it has been way too long.

Hormones Gone Wild

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Today I met with a hormone specialist due to a suggestion from my mother. She told me she had low thyroid and it was likely genetic and urged me to pay a visit to her doctor, good call mom. After some blood tests and thyroid tests it was determined that I have incredibly low thyroid and the metabolism of an elderly sloth. This explains why I can’t seem to lose weight no matter what I do and why I have such bad fatigue even when my fibromyalgia is under control. I start taking adrenal support supplements, iodine treatments, and thyroid medication this next week and anticipate positive change. They told me I may feel better immediately or it could take several months, I am hoping for the former. They also told me my difficult periods and fibrous breast tissue is related to most of my hormones being out of whack and even explain my nausea and vomiting! As a result of this information I am thinking I will postpone my endoscopy for a few months and see if this helps the nausea. Something that was interesting was that my blood results mimicked those of someone with Hashimoto’s which is an autoimmune thyroid disease. I say mimicked because the doctor felt the high inflammation and white count were results of the RA/RD and sjogren’s. So that was interesting, he wants to keep an eye on it to ensure I do not actually have Hashimoto’s. In short I’m very glad I listened to my mother and look forward to feeling more like a functional person.

Actemra and Spines

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Good News! As of a month ago my rheumatologist told me I’m in the best shape she has ever seen me! We also decided it was finally time to begin treatment for the chronic dry mouth my Sjogren’s has caused. I started Evoxac roughly a month ago and it has been FANTASTIC! I had no idea that it was possible to eat without food getting stuck in my throat or to talk without my mouth being so dry it clicked. My insurance covers most of the generic so I am most excited. The Actemra has continued to help massively without needing to increase the dose. I am now experiencing significantly less side effects; my mouth sores are considerably less severe, the fatigue is no longer crippling, my kidney’s stopped getting infections, and it no longer gives me a headache. Apparently it is surprisingly common for Actemra to cause some not-so-fun side effects right off the bat but tends to become more mild over time.

Spines, we need them. Much of my life I have had back pain for one reason or another, be it sports, rheumatoid disease, car accidents, or simply sleeping wrong. My spine has become hypermobile in some places and hypomobile in others. Essentially that means that certain vertebrae tend to get pulled out of alignment and others refuse to move at all. Since I my RA/RD is suddenly under control I have been able to identify this problem which has likely been going on for a reasonably long time. I started attending physical therapy for the 9th time last week. I cannot speak highly enough of my new PT! Both him and the student he is teaching are incredibly knowledgable about the joint complications that RA/RD, fibromyalgia, and my various surgeries. They have designed a special care program for me that is working around my cervical vertebrae as the ligaments are at risk due to the RA/RD [the most dangerous/lethal part of RA/RD]. I will be in PT for 2 weeks and then evaluated for change, should I not improve in this time I will be sent to a back specialist due to concerns of long term damage.

The one thing that is giving me a tough time currently is the liver spasms that continue to cause pain, nausea, and vomiting. I  am waiting to see my GI in 2 weeks to find out what/why this is happening. I no longer have a gallbladder so it can’t be that at least.

Overall this has been a month of good news health wise and I am very hopeful.

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.

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