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You Did WHAT?!?!

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Dear friends, something terrible has happened, let me explain.

Today I received a call from the infusion clinic I go to informing me that they accidentally gave me the wrong infusion. That’s right THE WRONG CHEMO ENTIRELY. They informed me that I received a round of a high dose Lupus drug called Benlysta. My doctor then told me I couldn’t receive my actual RA infusion for a month. I am already in survival mode so this is quite the disaster. The doctor told me in her 10 years she had never seen this happen, the RN at the IV center said never in her 11 years, and finally the hospital told me a switch like this has literally NEVER occurred. Lucky me. The Benlysta they game me has given me some pretty gross nausea, fever, chills, and headache, luckily that seems to be the extent of it [EDIT: it was not, there was more crap]. I am still livid with the hospital for making such a preventable mistake. For christ sake it passed through 3 checkpoints and no one caught it. I am pissed off that things are about to go sideways and there isn’t a damn thing I can do about it. Moral of the story, I am literally the unluckiest patient in Oklahoma.

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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.

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.

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