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Category Archives: RA/RD

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.

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.

Actemra and Spines

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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.

Rheumatoid Disease Awareness Day and What it Means to Me

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Rheumatoid Awareness Day [Feb. 2nd] is once again upon us, and in keeping with the theme of today I’d like to share what my experience with RD/RA has been like. Fair warning this may not be the heartwarming tale you are hoping for.

A little over 5 years ago, 17 year old me sat nervously in a rheumatologists office. My mother knew, I’m still not sure how, but she did. I had no idea. The rheumatologist came in and addressed both my mother and I solemnly stating that I had moderate to severe rheumatoid arthritis that required immediate treatment. I looked down at my hands, swollen beyond recognition and curled in on themselves. The hands I used for my art, completely unusable. I asked how common it was to be diagnosed at my age, the answer confirmed my suspicions that I was always, the exception. No one got sick at my age, I was an anomaly, an outlier, ‘special’. We agreed on an aggressive treatment using injectable Methotrexate, Prednisone, NSAIDs, pain meds, the whole shebang. Some of what they gave me helped, some just seemed to piss it off. Much of my senior year is a blur of DMARDs, Biologics, NSAIDs, pain, so much pain, depression, anxiety, and uncertainty. This was not supposed to happen, I was supposed to go to college anywhere I wanted, supposed to go be something, people my age didn’t get sick like this right? Right? Wrong. I managed to graduate despite missing 1/3 of my senior year and [poorly] teaching myself from home. I considered my options and in an act of reckless optimism, decided college was not too far fetched despite the fact that I was in iffy shape at best. Armed with a mini-pharmacy and encouragement from my teachers and family I left for a school 4 hours from my hometown.

College was tricky with chronic illness but not impossible, I had accommodations, an unwillingness to fail, and amazingly supportive parents. From my Freshman to Junior year I relied heavily on pain medication, ER trips in the middle of the night, and the kindness of others. Some days were better than others and not all of this time was bad. I met my best friends, learned how to be a person again, I even met my now husband. I went to Mayo clinic, I saw there were others my age just as broken. Knowing there were others gave me hope, if they could do it so could I. I spent that summer at the Mayo Clinic Pain Rehabilitation Center and have since been without any pain medication. It has in no way been easy to do this especially given how active my RD/RA had become. I am still in school and when it is all said and done will have been in college for 6 years. Not great, but pretty good given my situation.

Rheumatoid arthritis/disease took from me, it wasn’t as advertised and simply arthritis. I demand a refund. My RA/RD caused secondary sjogren’s disease, carpal tunnel, peripheral neuropathy in my feet, and joint issues ranging from aches and pains to dislocations. I have had to have major foot surgery, steroid injections in my shoulders and feet, and double knee surgery. More operations are on the horizon for me and I sleep in all sorts of braces. This disease took too much from me this is true, however I also gained something. Strength. My illness gave me a sense of resiliency few people my age, or any age are able to develop. For this I will always be grateful, it has helped me survive in a world that is at times unkind.

I am happy, I am strong, I am determined, I get depressed, I fail, I am not a super star. These things are okay, what matters is that I continue moving forward.

What’s important to understand is that Rheumatoid Disease is not just arthritis. It is vascular damage, secondary illnesses, fevers, joint issues, fatigue, widespread inflammation, muscle weakness, lifespan reduction, and pain. It is time to bring this illness out of the shadows and find a cure. For more information visit the Rheumatoid Patient Foundation, an organization which I am ever grateful exists.

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