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Almost Human

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I’m excited to announce that I’m starting to be a person again. Not simply in terms of my physical health but my emotional health as well. It is difficult to explain to individuals who don’t suffer from chronic illness, but I’ll try. When you become life-alteringly ill you hopes and dreams sort of cease to exist. It sneaks up on you, sometimes over a few months, others a few years, but it happens. You begin to become “sub-human”, or at least feel it, you aren’t what you were and basic tasks seem impossible. For this reason [and others] many individuals with chronic illness become depressed. For me this has shifted, I no longer feel like a muted and broken person, I feel whole again. I largely attribute this to the incredible success of the Actemra IV along with making a conscious effort to try and pull myself out of my “sub-human” state. I am feeling so well in fact that I have begun training for an endurance backpacking trip in a little over a year [more on that later]. All of this has been to say, don’t lose hope. Even though you cannot control your health you can control your reaction to it, you either get bitter or you get better, I choose better. I’m not saying you can’t acknowledge your negative emotions on the issue, just don’t let them rule you. Ranting aside, I’m just so happy to feel functional again, it has been way too long.

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Actemra and Spines

whoop ass

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.

Oral Fixation

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Similarly to how smokers crave oral stimulation long after they quit individuals who have used oral pain medication for long periods of time have the same issue. Some take up smoking, drinking copious amounts of soda, or eating when in pain. This is when an oral fixation becomes a ‘pain behavior’. For those of you who are not familiar with the phrase, a ‘pain behavior’ is an act that an individual partakes in when chronic pain is flaring up. It can be anything from rubbing the site of pain to compulsively eating. I am one of the lucky ones who has manifested with compulsively eating when in pain. In part it is because of my brain thinking, “Oh you want pain medication, what else can you consume instead? FOOD!” This has caused me to gain a decent amount of weight since Mayo PRC, an issue that I continue to want to address yet continuously fail to. This is in part because I feel that if I didn’t have this pain behavior that I would easily get sucked back into the constant pain medication cycle. I mention this because so few people talk about this aspect of chronic illness, I only know a handful of other people in similar positions to mine. In the not too distant future I hope to get a better handle on the ‘food as a pain behavior’ thing. If anyone has had any similar struggles I am more than happy to receive advice on the issue.

Bed Rest: Week 2

8flkNgqThis week I got my splint removed and got to see my foot! The incisions are significantly larger than I anticipated but are healing nicely. They removed half my stitches yesterday and will remove the remaining ones in 2 weeks. The doctor was impressed with my lack of pain meds [I’ve been off them for a week now] along with my limited range of motion. Apparently my toe wiggle is pretty impressive, it would appear they thought that wouldn’t happen for another week or so. Despite being a fall risk they went ahead and put me in a boot rather than a cast so I could shower more easily. I’m trying to adjust to having a giant boot on my leg while sleeping, not to mention how freaking heavy it is. My fantastic husband wins all the awards for putting up with me and taking care of me.

Muscle atrophy, what is it? This past week we have learned that my calf has turned into a gelatinous blob. I expected some atrophy in my leg but not so severe or quickly. I am less than halfway through my recovery so building the muscle back up is going to be an interesting adventure. I won’t be walking for 3 more weeks so I suspect this will get much worse before it gets better.

The storm systems that came through kicked my untreated RA/RD into high gear and caused a system failure resulting in a random couch nap on christmas. I am so very excited to start my IV in 2 weeks.

I am officially becoming stir crazy and feel like a shut in. I did get some excellent coloring books, a dinosaur building kit, and some books to help distract me.

Bed Rest: Week 1

lazy kangaroo

My foot operation on Monday went very well, they only had to break one bone instead of two! MY oh-so-clever doctor opted to give me some steroids prior to surgery as I have been on them for a while and he wants me to not only heal correctly but to help keep my RA/RD in check. They said they were able to align my foot to where it will be significantly better. I was really sick from the anesthesia for the first few days but finally got t where solid food was doable. As of right now I’m taking Oxycontin twice a day and have halved my Percocet doses already [from4 a day to 2]. What is both very neat yet strange is that I can feel the arch of my foot being… new. That’s the best way I can describe it, it just feels new. I get my splint off on Dec. 29th and will then have boot though I am still not allowed to bear weight until January. My excellent husband has been taking care of me around the clock despite some family health issues that have arisen with his parents. Our excellent friends have stopped by to give my husband breaks and brought us delicious food. I will continue to update as time goes on.

THINGS WE HAVE LEARNED:

  • Oxycontin makes me think everyone hates me.
  • Oxycontin makes me dizzy.
  • Percocet makes me nauseous.
  • Pain medication is like eating cork, I’m calling the doctor for the big guns on Monday.
  • I am the master of adult coloring books.
  • I need more colored pencils in my life [and more colors]
  • Benefiber does nothing.
  • I’m WAY too bossy to let other people do anything [need to work on that].

Bed Rest Prep

12249679_1195716180579577_864640948855096318_nAnyone who has spent more than 5 minutes with me will tell you I absolutely HATE staying still. Luckily I am headed toward 4-6 weeks of bed rest in 6 days! While I am excited to FINALLY have my foot dealt with I worry about bed rest, logically I know all I can do is prepare to the best of my ability. Here’s what I’ve managed so far:

  • Loose fitting clothes that will fit around a surgical shoe [limited selection, but at least there’s some]
  • Some meal planning of things my husband can cook
  • Stockpiling crafts
  • Stockpiling books
  • Arranging for visits from friends and family
  • Planning my couch nest
  • Working ahead on holiday gifts. Almost everything is bought and wrapped already.

This is all I have been able to think of doing so far, if anyone has experience with bed rest I’d love to hear your thoughts. The longest I’ve ever been off my feet was 2-3 weeks after my double knee surgery.

SIDE NOTE ABOUT PAIN MEDICATION:

As most of you know I went through treatment to get off of Vicodin and Tramadol as it was not controlling my chronic pain and causing issues. Due to the fact that I’m at risk for dependency I have created a dose schedule which tapers my dose and have requested to be put on a less potent pain medication. Mayo Clinic PRC protocol states that use of pain medication in acute situations is permitted. More on this to come.

Something Wicked This Way comes

courageWeird news everyone, in the last month I have had the pleasure of not 1 but 2 steroid packs! Until recently my medication cocktail has kept my RA/RD under control to where it wasn’t a constant issue, this may no longer be the case. My rheumatologist and I tend to use steroids rarely on me as I am overly sensitive to them and get mean, nauseous, and hungry very quickly [not fun]. The fact that she has just started throwing steroids at me concerns me, what worries me more though is that my joints are beginning to feel as though they are being ripped apart again. For those of you unfamiliar with this sensation imagine that there are weights you can’t drop that are pulling your shoulders and hips in ways they do not want to go, but all over, all the time. This could in part be due to my insanely heavy workload at school and the intense stress that comes with that. I’m meeting with my rheumatologist in a month to discuss our options. I have already missed more class than I had hope to for the entire semester, it’s not a ton but it’s more than I am comfortable with. What concerns me more is I am not controlling my pain as well as Mayo Clinic PRC taught me to. There is unfortunately a little seed in the back of my mind that toys with the idea of taking pain medication just until I graduate. Fear not, I have not forgotten how groggy and mean I was while on Tramadol and Vicodin. Nor have I forgotten the lovely sensation of withdrawal, not something I would recommend. Hopefully my rheumatologist and I will be able to alter my treatment plan and possibly switch me from my current biologic agent [Orencia IV] to another biologic. At this point in my treatment we have tried the biologics Humira, Remicade, and Orencia. Orencia has by far been the most successful in terms of effectiveness and minimal side effects. I will post an update on this issue once I have met with my rheumatologist.

REQUESTED BELSOMRA UPDATE:

I have now been on Belsomra for several months with no side effects whatsoever, we did have to increase my dose from 10mg to 15mg. All in all it has been highly useful, I continue to recommend it to people who suffer from insomnia. The only thing I have to report is YOU MUST allow yourself 7-8 hours after taking your medication before attempting to function, it makes me super groggy whenever I cut the cycle short. Other than that it’s been smooth sailing, for any further questions feel free to ask me in the comments or on the RA Supergirl facebook page.

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