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Category Archives: College

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.

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.

 

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.

Reckless Optimism

reckless optimism

Good morning everyone! So I have begun discussing my options with my professors, I will be finishing out my semester despite recent setbacks. Some of my instructors have granted me extensions on work and I will be discussing the possibility of an incomplete with another professor. It’s important to remember that ensuring you provide your best work is not a failure, something people in my position tend to forget this. To anyone who feels they are stuck and can’t make it through remember that you are worth quite a bit to those around you and that asking for help is not a failing of character. Some of you know this is something I have openly struggled with throughout my illness. I’ve had to adapt so that I would be able to continue to tread through the minefield that is chronic illness. It is all too easy to feel that you are asking for too many exceptions and that you are not worth the trouble, don’t. There is no correct way to handle chronic illness, there are no handbooks for how to handle chronic illness [well there are, but they are horrible].

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

Chronically Awesome

space tiger is best tiger

Hey folks! Alright so I’m a little over a month into school and I haven’t crashed and burned yet. Last week was a rough once as I missed a majority of my Math class however managed a high B on the exam. I need to improve my overall attendance again however regardless of this past week my attendance is still at an all time high. I’m very excited to be heading back up to Rochester, MN to go to my PRC aftercare at the Mayo Clinic. I’m hoping they will be able to help me get back on track with my PT or at least remind me of what I need to be doing to help myself. I’ve been slacking in that department as my energy level is depleted. However in spite of this my involvement in the Deaf community, my sorority, and my friends is at an all time high, however both my roommate and the boyfriend have expressed alarm at me beginning to overload myself as we all know I am extremely prone to do. What has helped my the most this year so far has been the amazing support system I have, I honestly do not know how I would do any of this without them. Knowing someone has your back and is encouraging you goes farther than anyone realizes, especially to those with chronic illness.

Additionally I have made the decision to discontinue my botox shot protocol temporarily, possibly permanently. It is just one more thing to deal with that has helped minimally and is honestly more trouble than it’s worth at this point. At this point in time is just is not hitting the “worth-it” line, Imitrex is a joke to my body and messes me up so I’ll revisit the issue with my neurologist as a means of handling acute situations.

My boyfriend has been fantastically helpful as of late with helping me get more active, there was a kayaking adventure yesterday with only one casualty [rest in peace boyfriend’s fitbit, the fishes have you now]. Prior to PRC I would’ve told him that it was not something I could do but by limiting our time on the lake and positive self talk I was able to allow myself to be excited for a physical activity. Hopefully more adventures to follow, I am considering getting a bike [which is kind of a big deal guys], I haven’t ridden one since before I got sick [one of the weird limitations I’d put on myself]

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