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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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Bed Rest: Week 1

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My foot operation on Monday went very well, they only had to break one bone instead of two! MY oh-so-clever doctor opted to give me some steroids prior to surgery as I have been on them for a while and he wants me to not only heal correctly but to help keep my RA/RD in check. They said they were able to align my foot to where it will be significantly better. I was really sick from the anesthesia for the first few days but finally got t where solid food was doable. As of right now I’m taking Oxycontin twice a day and have halved my Percocet doses already [from4 a day to 2]. What is both very neat yet strange is that I can feel the arch of my foot being… new. That’s the best way I can describe it, it just feels new. I get my splint off on Dec. 29th and will then have boot though I am still not allowed to bear weight until January. My excellent husband has been taking care of me around the clock despite some family health issues that have arisen with his parents. Our excellent friends have stopped by to give my husband breaks and brought us delicious food. I will continue to update as time goes on.

THINGS WE HAVE LEARNED:

  • Oxycontin makes me think everyone hates me.
  • Oxycontin makes me dizzy.
  • Percocet makes me nauseous.
  • Pain medication is like eating cork, I’m calling the doctor for the big guns on Monday.
  • I am the master of adult coloring books.
  • I need more colored pencils in my life [and more colors]
  • Benefiber does nothing.
  • I’m WAY too bossy to let other people do anything [need to work on that].

Bed Rest Prep

12249679_1195716180579577_864640948855096318_nAnyone who has spent more than 5 minutes with me will tell you I absolutely HATE staying still. Luckily I am headed toward 4-6 weeks of bed rest in 6 days! While I am excited to FINALLY have my foot dealt with I worry about bed rest, logically I know all I can do is prepare to the best of my ability. Here’s what I’ve managed so far:

  • Loose fitting clothes that will fit around a surgical shoe [limited selection, but at least there’s some]
  • Some meal planning of things my husband can cook
  • Stockpiling crafts
  • Stockpiling books
  • Arranging for visits from friends and family
  • Planning my couch nest
  • Working ahead on holiday gifts. Almost everything is bought and wrapped already.

This is all I have been able to think of doing so far, if anyone has experience with bed rest I’d love to hear your thoughts. The longest I’ve ever been off my feet was 2-3 weeks after my double knee surgery.

SIDE NOTE ABOUT PAIN MEDICATION:

As most of you know I went through treatment to get off of Vicodin and Tramadol as it was not controlling my chronic pain and causing issues. Due to the fact that I’m at risk for dependency I have created a dose schedule which tapers my dose and have requested to be put on a less potent pain medication. Mayo Clinic PRC protocol states that use of pain medication in acute situations is permitted. More on this to come.

Reckless Optimism

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Good morning everyone! So I have begun discussing my options with my professors, I will be finishing out my semester despite recent setbacks. Some of my instructors have granted me extensions on work and I will be discussing the possibility of an incomplete with another professor. It’s important to remember that ensuring you provide your best work is not a failure, something people in my position tend to forget this. To anyone who feels they are stuck and can’t make it through remember that you are worth quite a bit to those around you and that asking for help is not a failing of character. Some of you know this is something I have openly struggled with throughout my illness. I’ve had to adapt so that I would be able to continue to tread through the minefield that is chronic illness. It is all too easy to feel that you are asking for too many exceptions and that you are not worth the trouble, don’t. There is no correct way to handle chronic illness, there are no handbooks for how to handle chronic illness [well there are, but they are horrible].

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.

Remember: Power, wisdom, courage

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.

Hand adventures [Part 2]!

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So over the past few months I started dropping things and not being able to feel my hands, additionally I started tripping and falling everywhere I went. All put together we were concerned it pointed to MS [keep in mind this is all a week before our wedding. My neurologist essentially said ‘we will table this until after the wedding it’s not going to be horrible but I’m not doing it now’. Flash forward a month or so, during this time I manage to fall down a full flight of stairs twice. One majorly unfun neurological test later we have found the following, my right hand has carpal tunnel [possibly caused by RA], my left hand is allegedly fine [though it’s beginning to feel like the right] and finally I have peripheral neuropathy in both of my feet. For those of you who haven’t had the fun of a neuropathy test it is conducted by hooking you up to a machine that reads your nerve and muscle responses as they shock you with what I think looks like a miniature taser, they then stick a needle into the muscle in key places and have you flew in order to see how the nerves and muscles are interacting. All in all the test itself is pretty interesting and not too painful.

So what to do about these things that are luckily not MS you may ask? Well, I can wear a wrist brace at night to help with the numbness in my hand and I was told to enroll in a aquafit class so I could strengthen my core as that can help with the lower limb neuropathy. Later this week I’ll be working with my massage therapist to see if there’s anything else we can do to improve feeling in my feet.

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