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For The Spouses

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I know it’s not easy. I know that it’s difficult to be the 25 year old guy in the office who has ‘the sick wife’. As a kid you didn’t dream of one day telling your boss you’re taking a month of leave to care for your 24 year old, bed-ridden, wife. You didn’t expect to know what biologics, NSAID’s, or vestibular therapy was. I know watching me cry in pain, wrack up medical bills, and needing extra help is exhausting. Spouses of people with chronic illness deserve so much more credit than we give them.

When my husband and I met I only had one diagnosis [RA/RD] but told him upfront that it was going to affect his life if we were to date. For whatever reason he ignored this warning and I am so grateful that he did. Several additional diagnosis [Fibromyalgia/Sjogren’s] later Ethan is still hanging in there. My husband does his best to cheer me up of my most difficult days and helps me take advantage of my good ones. Ethan is my constant cheerleader who provides me with some much needed optimism on my worst days.

So cheers to the Spoonie Spouses,

RASupergirl

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.

 

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.

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 ❤

Avoidance

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I haven’t been writing. Not here, and not at all. If/when I write about something it makes it more real to me. However I set out with the intention of full transparency when I started RA Supergirl years ago. So let’s get honest, things have been bad. I was in a fender bender over the summer and it kicked my RA up in a really weird way. Then I started the most difficult semester I will ever be in. People in my program tend to average 3-6 hours of sleep and are under immense stress. This has only made things worse on my end. I am failing a class despite making Dean’s List last semester. I’m so tired and my pain level so high that I can’t focus on my assignments. There are times when I become so anxious that I want to curl up under my desk and stay there. I’ve started to develop rheumatoid nodules on my hands, this indicates things may be worse than we thought. I feel like a failure as a wife, I have been too sick to grocery shop for 2 weeks [thank god for Blueapron]. I just started a month-long Prednisone treatment in an attempt to arrest what is going on.

All that aside there have been some positive developments in my world as well. I have an interview for an excellent opportunity in urban education next week. I finally went off the thyroid medication that was making me sick [more on that later]. My crazy supportive husband has been doing his best to help me despite being in grad student hell a the moment. Rosh Hashanah is just around the corner along with the other high holidays, I’m really excited for that. Finally, I started a job as an entomology lab technician, I really enjoy it! As a whole I’m trying to look at what could be rather than what currently is.

I’m sorry this was not an inspirational post, but it was an honest one.

 

Because I’m Crazy [Pre-PCT 1]

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I have decided to do something absolutely insane, allow me to explain. I have decided that I will be hiking the Pacific Crest Trail [PCT] roughly a year from now. This trail goes from Mexico to Canada, is 2,650 miles long and takes 4-6 months to complete on average. This is about the time that people say “But what about your rheumatoid arthritis [or fibro, or sjogren’s, etc…]”. To which I say, “doesn’t that make it all the more impressive”. I have done my due diligence to ensure I take care of myself on the trail. I have spoken with my rheumatologist about how to get biologics on the trail. We decided switching from my Actemra IV to Actemra subq may be the way to go. She is fully supportive of this endeavor and is amazed with my turnaround. Considering 2 years ago I was so sick I wanted to die and practically crawled to Mayo Clinic, this is nothing short of amazing. I read about the PCT a few years ago and thought, “I wish I was healthy enough to do this”. Now I can, and I will.

“Why now?” is also a question I have been hearing a lot. Well, about that. My RA/RD is currently under control and I intend to take advantage of this. Additionally I will be graduating next May with an education degree. In Oklahoma. During a hiring freeze. So, due to the fact that only rural districts are hiring [which you always get stuck in] I will be taking off for 6 months and praying Oklahoma can figure out it’s current budget crisis. This is the only time in my life that I have limited responsibilities, I only have my husband to worry about.

Now they say you only need 12  weeks of training before leaving for the trail. Then I thought to myself 52 weeks of practice seems pretty good too. I have begun my doing 60-90 minutes of cardio 4-5 times a week and began resistance training to strengthen my core and back. I’m 4 weeks into this training and so far my body has held up with no, I repeat NO issues. My calves are so muscular I could probably just hop into a low flying helicopter*. My amazingly kind and understanding husband will be mailing me my oral medications as I continue down the trail. I have started making my own dehydrated meals, can make a fire out of anything, and learned how to layer like a pro. I will not be unprepared. I will continue to update as we get closer to my departure.

PCT (1)

Hart’s Pass, Washington

*Please do not attempt this.

 

 

 

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