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Category Archives: Medication

Lucky 🍀

xxx52bzThese past few days I have been trying to focus on the good. I am lucky that I didn’t get something worse in my IV. I’m lucky that I have the friends and family I do that support me. Honestly if I didn’t have the support system I do, this would have been a devastating hit. While this is no means ideal, it is not going to be the end of me. I have worked with all but one professor to ensure my ability to work from home and finish out the last few weeks of of this semester. My professors have rallied around me in a way I had not anticipated, for this I am eternally grateful. I owe all my professors so much for how gracious they have been regarding the situation. I am hopeful that I will be able to finish out my semester and begin my student teaching in January as planned.

Now as far as the physical symptoms from the Benlysta go, they have been pretty consistent. I have been sleeping between 13-16 hours and waking up exhausted. I have a hefty dose of headaches and nausea. I have been drinking stomach soothing tea and eating candied ginger like no ones business [I strongly recommend both for medication induced nausea]. Thankfully the chills have let up but I am still rocking a fever. Hopefully things will start to level out as my body has a chance to process this crap out of my blood. We will see how things are going once we start running labs.

 

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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.

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.

Actemra Adventure Part 1

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Actemra, what is it? Actemra is a rheumatoid disease specific drug that can be injected or in my case infused. Actemra is the only drug of its type as it is an IL-6 inhibitor, which means it works differently than TNF-inhibitors like Humira, Orencia, Enbrel, and Remicade. I had my first IV of Actemra 3 weeks ago and have good news and bad news. Bad news first, during the IV my blood pressure dropped to 84/62 and I almost passed out, I also was nauseous for the next few days and felt as if I were back on Methotrexate [which made me nauseous always]. Additionally my hair started to thin [specifically on the right side] and is visibly different, hair loss is not a common side effect of Actemra so I’m attempting to pin down what happened there. Good news, I FEEL LIKE A PERSON! After months of feeling gross and immobile I can move around more easily, even with my boot. I am treating the hair thinning with Lush Cosmetics hair products. I am willing to have a few days of feeling like hell in order to function on this level normally. Hopefully I will continue to operate at this level for some time, I remain hopeful that the Actemra will do its job.

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

Quick Spoon Theory Recap

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do not waste spoons
At the PRC today [which I will be posting about later] a woman in group brought up an ideology that I have become very fond of called “the Spoon Theory” while discussing moderation in group. I haven’t addressed this in a while so let us recap. The spoon theory is formed around the idea that an individual with chronic illness wakes up every morning with a certain amount of energy [AKA spoons], the individual then has to carefully choose how their day will be based on how many ‘spoons’ certain activities take. I have found this to be an IMMENSELY helpful tool when speaking with friends and family about my situation. I suggest that everyone takes a look at the original article [link below] whether you’re a patient or a friend/family member.

 

The original author: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

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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