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Tag Archives: arthritis

Hormones Gone Wild

Morticia

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.

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Actemra and Spines

whoop ass

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.

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.

amen latice royale

Bed Rest: Week 1

lazy kangaroo

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.

Battle Report

polly pocket lizards

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.

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