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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.


Oral Fixation


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.

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.


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.

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:|dc_pcrid_62893172885

Now That’s What I Call A Blaze of Glory

sad dino suitSo. For those of you who have followed me on facebook you may know that I started a small fire last Wednesday. Not in an ‘arsony-crazy-chick’ kind of way though so don’t get too worked up. So I had a candle that I’d moved to my nightstand and a box of issues was a little close. When I looked down I thought “hmmm, that’s toas– OH MY GOD FIRE”, in a fit of panic and not wanting to die I picked up the fiery ball of tissue death, ran towards my bathroom, drop the fiery ball, pick it back up, throw it towards sink, lands on mirror somehow sticking, I scraped fire monster into sink [RIP toothbrush]. At think point I’m amazed I didn’t burn down my damn house, I also realized that my right thumb had 2nd degree burns. My roommate was kind enough to drive me to walgreens because I thought I just needed some burn ointment [for the record I’m actually first aid trained], while in Walgreens my skin started to blister and hurt like crazy. My roommate took me to the ER where the nurse practitioner told me “I don’t give female patients ‘Silvadine’ [RX burn cream that EVERYONE uses] because it can discolor your delicate hands”. I told him I didn’t care and that fire also has that effect on hands. Here’s where things take a turn. They wrapped my hand and gave me something for pain. I thought it was a fairly low dose hydrocodone mix [like Vicodin] NOPE.

1 Lortab later I lost my house key and don’t remember going home. I do however remember waking up from my codeine induced coma thinking 2 things. 1) this is the most I’ve slept since Mayo PRC 2) Everything hurts and I feel like death. SO. I ditched the remaining Lortab I was given and got all eye of the tiger and soldiered on. This adventure made me realize that I really can’t have pain medication no matter the situation, at PRC they say that it’s okay if it’s an acute issue but for my own sake I can’t. On the upside I’m only 1 week out and my hand is bandage free for the first time today, the skin is still messed up but it’s not terrible.


The girl on fire

Let’s Talk About Drugs

leslie knope your life.

Alright gang, as many of you know I completed a pain treatment program at Mayo Clinic PRC and discontinued my Vicodin, Tramadol, and occasional Percocet. For those who don’t have prior knowledge, I attended PRC to learn to better manage my pain not because I was addicted to pain medication [nothing against those who better their lives who are coping with addiction]. It has been 6 months and I have not taken any pain medication since completing the program. I had turned over all of the pain medication I had with me after completing the program but found duplicates of all the medications in my medication drawer back home that I had forgotten about. For 6 months I have sat on this medication due to either some sort of emotional attachment or because I was afraid I would legitimately need it. Today I turned over all, and I do mean ALL narcotics to the police station narcotic disposal. It may not seem like much but I got rid of my ‘safety net’ of pain medication and somehow feel more prepared to stay pain medication free.

PRC day 1: The new kid

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i hate it when jesus rides a dino in my house

As some of you may know today was my first day at the Mayo clinic’s “Pain Rehabilitation Center”. I am still going through orientation and will officially start the program on Wednesday but have already met with most of my care team. Today we evaluated what health, social, emotional, and mental concerns I had and what I would like to focus on. I also had my first biofeedback session today and am practicing some of the relaxation and breathing techniques they showed me today. I met and spoke with a lot of the people on ‘Team 2’ which will be the team I start working with on Wednesday, they were all very friendly and had advice to help with the program. It was determined that I am the youngest patient on Team 2 by 10 years, I feel like an  [awesome] anomaly 🙂  After speaking with my care coordinator at length today I am even more excited for this program! I really look forward to making as much progress as possible in order to improve my quality of life. I [hopefully] will be updating on the program every other day. So excited for what has yet to come!

In unrelated news I am all done with the semester and seem to have made decent grades. I FINALLY have in state tuition and am returning to full time this summer.

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