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Avoidance

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I haven’t been writing. Not here, and not at all. If/when I write about something it makes it more real to me. However I set out with the intention of full transparency when I started RA Supergirl years ago. So let’s get honest, things have been bad. I was in a fender bender over the summer and it kicked my RA up in a really weird way. Then I started the most difficult semester I will ever be in. People in my program tend to average 3-6 hours of sleep and are under immense stress. This has only made things worse on my end. I am failing a class despite making Dean’s List last semester. I’m so tired and my pain level so high that I can’t focus on my assignments. There are times when I become so anxious that I want to curl up under my desk and stay there. I’ve started to develop rheumatoid nodules on my hands, this indicates things may be worse than we thought. I feel like a failure as a wife, I have been too sick to grocery shop for 2 weeks [thank god for Blueapron]. I just started a month-long Prednisone treatment in an attempt to arrest what is going on.

All that aside there have been some positive developments in my world as well. I have an interview for an excellent opportunity in urban education next week. I finally went off the thyroid medication that was making me sick [more on that later]. My crazy supportive husband has been doing his best to help me despite being in grad student hell a the moment. Rosh Hashanah is just around the corner along with the other high holidays, I’m really excited for that. Finally, I started a job as an entomology lab technician, I really enjoy it! As a whole I’m trying to look at what could be rather than what currently is.

I’m sorry this was not an inspirational post, but it was an honest one.

 

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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.

 

 

 

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.

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.

Bed Rest: Week 2

8flkNgqThis week I got my splint removed and got to see my foot! The incisions are significantly larger than I anticipated but are healing nicely. They removed half my stitches yesterday and will remove the remaining ones in 2 weeks. The doctor was impressed with my lack of pain meds [I’ve been off them for a week now] along with my limited range of motion. Apparently my toe wiggle is pretty impressive, it would appear they thought that wouldn’t happen for another week or so. Despite being a fall risk they went ahead and put me in a boot rather than a cast so I could shower more easily. I’m trying to adjust to having a giant boot on my leg while sleeping, not to mention how freaking heavy it is. My fantastic husband wins all the awards for putting up with me and taking care of me.

Muscle atrophy, what is it? This past week we have learned that my calf has turned into a gelatinous blob. I expected some atrophy in my leg but not so severe or quickly. I am less than halfway through my recovery so building the muscle back up is going to be an interesting adventure. I won’t be walking for 3 more weeks so I suspect this will get much worse before it gets better.

The storm systems that came through kicked my untreated RA/RD into high gear and caused a system failure resulting in a random couch nap on christmas. I am so very excited to start my IV in 2 weeks.

I am officially becoming stir crazy and feel like a shut in. I did get some excellent coloring books, a dinosaur building kit, and some books to help distract me.

Battle Report

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So I met with my rheumatologist today and learned several things; my RA/RD is fully active again, I have Sjogren’s syndrome [not a surprise], joint damage in my hands and feet, and my Fibromyalgia is fully active. Obviously most of these things are less than ideal, however we have a course of action. I am a fan of practicing reckless optimism, so let us explore! I will be changing my infusions from my IV Orencia to IV Actemra. We will be taking advantage of me not being allowed to have my IV for 8 weeks due to surgery for me to transition over to my new biologic. For those who are not in the know Actemra is an IL-6 inhibitor which works with a part of the immune system no other drug currently addresses. In addition to this I have had extremely dry eyes and mouth for months and finally asked about it, I was told I had sjogren’s syndrome which my doctor had several medical solutions to help with symptoms. We decided to just take care of the imminent RA issue for now and to explore these options at a later date. At present it appears the joints in both my hands and feet are finally showing signs of irreversible deterioration however we had been aware that we were headed toward that for some time, we had just hoped we could stave it off until I was a bit older. She strongly encouraged my foot operation due to the fact that they are re-aligning the bone, shaving the bunion, and evaluating the deterioration of the joint capsule. My foot operation is scheduled for December 14th and I am to be off my feet for 4-6 weeks. I only have the option of 3-4 weeks so we will be hoping for the best. My husband, younger brother, and close friends will be helping me not lose my mind I also have adult coloring books, movies, and Fallout 4 to help distract me. Due to my history with pain medication I will be attempting to go off of it as soon as possible. They want me on Oxycodone and Percocet for almost a month, we are aiming for less than 2 weeks.

BELSOMRA UPDATE:

DO NOT ACCIDENTALLY DISCONTINUE, I did this due to a refill error on my part, this caused me to not sleep for close to a week. Prior to getting it back into my system I experienced mild withdrawal symptoms that made me a grouch. After 3 days back on my regular sleep schedule, all is well with Belsomra and my world.

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