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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

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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.

Finals Are Coming

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Hello my lovely friends! I have several bits of news to share:

FEET: AKA Foot Adventure [Part 2]

Alright, so I went to the orthopedic specialist in Oklahoma City with the hopes of getting some help with my foot pain. After some extensive x-rays and an hour wait a resident showed up and asked me to explain my pain. I said, ” the pain is behind the bunion right here [point to big toe joint]”. He looked very confused and asked if I was sure, I assure him that as the keeper of my foot I am certain. He says he has to review my x-rays and disappears for 30 minutes. Then the actual doctor came to see me asking me again to explain my foot situation. I tell him the whole pain here [point to joint], not there thing. He asks if there’s exterior pain on the bunion itself. I explain that it is a little painful but the joint hurts worse hence all the steroid shots. He then tells me he has to review my x-rays and disappears for 30 more minutes, at this point I have missed my classes and am not thrilled. When he finally returned he didn’t look thrilled, he explains that my x-ray reveals no RA related joint damage. I all but scream “yay I’m not getting frog feet!”. I then explain that frog feet it what I call it when late stage RA runs your feet making them fin like. I asked him why this wasn’t extremely good news still just excited that frog feet aren’t in the cards, he explained that the x-rays provided no insight into the cause of the pain. I’ve been scheduled for an MRI on Thursday in the hopes that some sort of edema will become apparent on the x-ray. We are to reconvene next week to go over the images and decide a course of action. While this wasn’t the most productive trip one thing he told me was worth the hours of waiting. He said, “Maddie, I assume that you haven’t travelled all this way and endured foot spacers, orthotics, drugs, and foot injections for the fun of it. I believe that your foot is hurting you and while I can’t make any assurances I would like to help you”. That alone makes me want to work with him in the future.

BELSOMRA:

I am now a little over a month into Belsomra and have the following the report. Over time my ability to instantly fall asleep has dwindled but I am still falling asleep in less than 30 minutes. I think this could be related to my stress level right now [wedding, finals, etc…]. I am still experiencing NO and I mean NO side effects! My sister has also begun taking it [also an insomniac] and is responding to it well also.

FINALS:

This past semester I was attending every class until about half-way through when I started having health issues again. Because of this there are a couple classes with grades that could use a boost. This week is dead week and I am taking both halves of my ASL final this week. Next week I have my math, children’s lit, and health exams. I’m getting to the point where I’m overly stressed and am actively working on that.

A Case For Belsomra

looking for alaska**I am not a medical professional nor do I receive any money for my opinions about any pharmaceuticals**

Now that we have that out of the way lets talk about a brand new medication called Belsomra. Belsomra is a new sleeping medication that works differently than any other drug on the market. It targets the neurotransmitter ‘Orexin’ which allows wakefulness and shuts it down for a 7 hour period thus allowing for sleep.

Now I personally have struggled with chronic insomnia literally my entire life, as a child I’d stay up for days on end and survive on little to no sleep. It’s been especially tough since leaving PRC and no longer have my pain medications sedating me. I have tried all sorts of medications including but not limited to Trazidone, Ambien, Lunesta, Restoril, and Rozerem. None of which offered any real relief or sleep. A month ago I was talking with my psychiatrist after an especially rough night [only 1 hour of sleep] she said she wanted me to be her first patient to try a new medication that just hit the market. I started taking Belsomra and for the first time in my life I not only fall asleep in under 30 minutes but also wake up feeling rested and not waking up every hour throughout the night. This has been a bit of a game changer as it is the first thing in my entire life that has actually let me sleep without waking up feeling drugged. The best part is that regardless of my pain level I have been able to sleep. It’s easier to manage the pain and fatigue I do have due to the fact that I’m actually sleeping.

Below is  a link to the official Belsomra website:

http://www.belsomra.com/?utm_source=google&utm_medium=cpc&utm_term=belsomra&utm_campaign=Branded+2.0&utm_content=sfHq7EgOy|dc_pcrid_62893172885

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