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Hell or High Water

Thus far all field research has proved I am immortal. Well, at least more difficult to kill than anticipated. The side effects of the Benlysta lasted quite a bit longer than anticipated. The psychological impact was a surprise for all involved, luckily I’m doing better now. Through some act of god my teachers allowed me to finish my school work over winter break [well one JUST got finished]. In fact, upon receiving my email explaining the situation they had a group meeting and figured out what needed to be done in order for me to graduate on time and finish out the semester.  I realize I am incredibly lucky/blessed to have teachers who are so willing to go up to bat for me. Not a single one asked for a shred of evidence, they took me at my word. This is absolutely amazing considering the nature of my situation and how damn weird it is. Thanks to them I was able to keep my internship and am almost done with my student teaching. This is not to say there haven’t been issues.

For instance:

  • Right now I am having hip and shoulder issues and doubled up on my Celebrex.
  • I can’t feel my hands and feet intermittently due to peripheral neuropathy.
  • Steroid shots.
  • My rheumatologist wants me to seek treatment for my hands [who has time for that?]
  • I’m still getting headaches even though I just had my Botox treatment.
  • Fevers.
  • Intermittently needing my cane.

Despite this laundry list of grossness, I need to focus on my goals. My husband and I are buying a house [we move in 3 weeks, I have packed nothing], I graduate in a just over a month, and I am fielding multiple job offers. These are all things I had at one point or another seen as impossible. These are the things I strive for, this is what beating RA looks like. I know I will never be who I was before I was sick, just like I know there is no cure. My definition of beating RA has been altered, I once thought that meant a cure. I now know that beating RA is living your damn life.

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.

 

Tis But a Scratch

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So I recently drove down to Texas to see my rheumatologist for a checkup. It was a bit discouraging to say the least. Right off the bat she told me I looked a little worse for the wear between my dark under eye circles and super sexy hobble. It would appear that the stress of my current course load combined with life has made for one hell of a flare. She gently suggested I take some time off of school to try and get my health back on track. I informed her that as someone in the 6th year of a bachelor’s I was going to graduate this May even if it killed me. I told her I just need to make it 7 more weeks, then off to student teaching. We did find that I am developing some hip problems on the right side. She is concerned about the potential of a labral tear developing due to the amount of stiffness and clicking. To me it almost feels like something is stuck in my hip socket, sort of like my joint has a small marble or some sandpaper in it. The rheumatologist said that we may need to look at treating it if it doesn’t improve in the next few months. She didn’t go into what treating it would entail, honestly I think we need to backburner the issue for now. The largest issue in my world right now is the crippling exhaustion. I’m back to sleeping 12 hours and feeling like I have only heard rumors of sleep. It is possible that this is tied to finally being off of my prednisone or me discontinuing my thyroid treatment [due to accidentally being over-medicated]. The current plan is to drag myself through this semester and meet with my rheumatologist in December.

GOOD NEWS [because we need some]: We figured out what those terrible side pains are! It was caused by the intercostal muscles on the right side spasming. We are not exactly sure as to what caused them initially, but an extremely talented massage therapist has been able to get them under control. More or less they now appear to be gone! I REPEAT GONE!

My friends and family have been really encouraging despite all of the current weirdness. They are seriously the best and have helped me stay afloat this long ❤

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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