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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.

Rheumatoid Disease Awareness Day and What it Means to Me

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Rheumatoid Awareness Day [Feb. 2nd] is once again upon us, and in keeping with the theme of today I’d like to share what my experience with RD/RA has been like. Fair warning this may not be the heartwarming tale you are hoping for.

A little over 5 years ago, 17 year old me sat nervously in a rheumatologists office. My mother knew, I’m still not sure how, but she did. I had no idea. The rheumatologist came in and addressed both my mother and I solemnly stating that I had moderate to severe rheumatoid arthritis that required immediate treatment. I looked down at my hands, swollen beyond recognition and curled in on themselves. The hands I used for my art, completely unusable. I asked how common it was to be diagnosed at my age, the answer confirmed my suspicions that I was always, the exception. No one got sick at my age, I was an anomaly, an outlier, ‘special’. We agreed on an aggressive treatment using injectable Methotrexate, Prednisone, NSAIDs, pain meds, the whole shebang. Some of what they gave me helped, some just seemed to piss it off. Much of my senior year is a blur of DMARDs, Biologics, NSAIDs, pain, so much pain, depression, anxiety, and uncertainty. This was not supposed to happen, I was supposed to go to college anywhere I wanted, supposed to go be something, people my age didn’t get sick like this right? Right? Wrong. I managed to graduate despite missing 1/3 of my senior year and [poorly] teaching myself from home. I considered my options and in an act of reckless optimism, decided college was not too far fetched despite the fact that I was in iffy shape at best. Armed with a mini-pharmacy and encouragement from my teachers and family I left for a school 4 hours from my hometown.

College was tricky with chronic illness but not impossible, I had accommodations, an unwillingness to fail, and amazingly supportive parents. From my Freshman to Junior year I relied heavily on pain medication, ER trips in the middle of the night, and the kindness of others. Some days were better than others and not all of this time was bad. I met my best friends, learned how to be a person again, I even met my now husband. I went to Mayo clinic, I saw there were others my age just as broken. Knowing there were others gave me hope, if they could do it so could I. I spent that summer at the Mayo Clinic Pain Rehabilitation Center and have since been without any pain medication. It has in no way been easy to do this especially given how active my RD/RA had become. I am still in school and when it is all said and done will have been in college for 6 years. Not great, but pretty good given my situation.

Rheumatoid arthritis/disease took from me, it wasn’t as advertised and simply arthritis. I demand a refund. My RA/RD caused secondary sjogren’s disease, carpal tunnel, peripheral neuropathy in my feet, and joint issues ranging from aches and pains to dislocations. I have had to have major foot surgery, steroid injections in my shoulders and feet, and double knee surgery. More operations are on the horizon for me and I sleep in all sorts of braces. This disease took too much from me this is true, however I also gained something. Strength. My illness gave me a sense of resiliency few people my age, or any age are able to develop. For this I will always be grateful, it has helped me survive in a world that is at times unkind.

I am happy, I am strong, I am determined, I get depressed, I fail, I am not a super star. These things are okay, what matters is that I continue moving forward.

What’s important to understand is that Rheumatoid Disease is not just arthritis. It is vascular damage, secondary illnesses, fevers, joint issues, fatigue, widespread inflammation, muscle weakness, lifespan reduction, and pain. It is time to bring this illness out of the shadows and find a cure. For more information visit the Rheumatoid Patient Foundation, an organization which I am ever grateful exists.

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Actemra Adventure Part 1

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Actemra, what is it? Actemra is a rheumatoid disease specific drug that can be injected or in my case infused. Actemra is the only drug of its type as it is an IL-6 inhibitor, which means it works differently than TNF-inhibitors like Humira, Orencia, Enbrel, and Remicade. I had my first IV of Actemra 3 weeks ago and have good news and bad news. Bad news first, during the IV my blood pressure dropped to 84/62 and I almost passed out, I also was nauseous for the next few days and felt as if I were back on Methotrexate [which made me nauseous always]. Additionally my hair started to thin [specifically on the right side] and is visibly different, hair loss is not a common side effect of Actemra so I’m attempting to pin down what happened there. Good news, I FEEL LIKE A PERSON! After months of feeling gross and immobile I can move around more easily, even with my boot. I am treating the hair thinning with Lush Cosmetics hair products. I am willing to have a few days of feeling like hell in order to function on this level normally. Hopefully I will continue to operate at this level for some time, I remain hopeful that the Actemra will do its job.

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.

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