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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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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.

Hand adventures [Part 2]!

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So over the past few months I started dropping things and not being able to feel my hands, additionally I started tripping and falling everywhere I went. All put together we were concerned it pointed to MS [keep in mind this is all a week before our wedding. My neurologist essentially said ‘we will table this until after the wedding it’s not going to be horrible but I’m not doing it now’. Flash forward a month or so, during this time I manage to fall down a full flight of stairs twice. One majorly unfun neurological test later we have found the following, my right hand has carpal tunnel [possibly caused by RA], my left hand is allegedly fine [though it’s beginning to feel like the right] and finally I have peripheral neuropathy in both of my feet. For those of you who haven’t had the fun of a neuropathy test it is conducted by hooking you up to a machine that reads your nerve and muscle responses as they shock you with what I think looks like a miniature taser, they then stick a needle into the muscle in key places and have you flew in order to see how the nerves and muscles are interacting. All in all the test itself is pretty interesting and not too painful.

So what to do about these things that are luckily not MS you may ask? Well, I can wear a wrist brace at night to help with the numbness in my hand and I was told to enroll in a aquafit class so I could strengthen my core as that can help with the lower limb neuropathy. Later this week I’ll be working with my massage therapist to see if there’s anything else we can do to improve feeling in my feet.

The Foot Chronicles [Part 3]

Posted on

avocuddle

So today I went back to my fabulous orthopedist to review my MRI results and talk about my options. Upon arrival I met another one of his residents [he has a LOT] who poked around my foot a bit then called my doctor in. It would appear that I will have the distinct pleasure of major bunion surgery. Now there’s several different ways to operate on a bunion but given my RA and its severity I will be having the more extensive version. This means they will loosen the joint capsule, shave the bone protrusion down, and break the base on my big toe and reset it straight. My orthopedist did say that were I a 60+ patient he would have fused the joint but didn’t want to do something so extreme on me at my age [thank god]. The recovery time is 6+ weeks so we are waiting until after the wedding and have it done in December. I’m not thrilled about this but we have tried all of the alternatives with little success, additionally the skin near the bunion is paper thin due to steroids and bone pushing against it. I asked my  orthopedist why I had such a severe bunion at my age and he said he felt the RA fed the bunion and vice versa causing it to just keep getting worse. To put icing on the cake my Orencia IV will have to be pushed off post-op. I’ll have surgery 2 weeks after my IV then can’t have it for 6 weeks after the surgery for fear of the foot not healing. I’m going to be talking with my rheumatologist about this as I’ve never gone that long without treatment before and see what she says. In the meantime I was prescribed a topical anti-inflammatory to get me through to December and given a standing appointment should my foot get too bad between now and my pre-op consult in November. I will update as this progresses.

Let’s Talk About Drugs

leslie knope your life.

Alright gang, as many of you know I completed a pain treatment program at Mayo Clinic PRC and discontinued my Vicodin, Tramadol, and occasional Percocet. For those who don’t have prior knowledge, I attended PRC to learn to better manage my pain not because I was addicted to pain medication [nothing against those who better their lives who are coping with addiction]. It has been 6 months and I have not taken any pain medication since completing the program. I had turned over all of the pain medication I had with me after completing the program but found duplicates of all the medications in my medication drawer back home that I had forgotten about. For 6 months I have sat on this medication due to either some sort of emotional attachment or because I was afraid I would legitimately need it. Today I turned over all, and I do mean ALL narcotics to the police station narcotic disposal. It may not seem like much but I got rid of my ‘safety net’ of pain medication and somehow feel more prepared to stay pain medication free.

I’m really good at this game

teslaSo in keeping with the general theme of “why not” my rheumatologist and I suspect that my RA may in fact be active again. There is a possibility that this is a temporary flare up but my lack of response to the doubled dosage of my NSAID [Celebrex] is concerning. We believe this could have been triggered either by my increased use of my hands due to my ASL class or my increased stress level [I forgot what being a full-time student was like]. Regardless of the cause we will just need to keep an eye on it, my rheumatologist has assured me that Methotrexate is not in my future if she can help it, and I have decided that regardless of severity I will not be going back on pain medications.

Additionally should my RA be active again it would not be considered uncommon, below I’ve included the link to a study regarding the rate of remission in RA patients. most notably it states, “Long-term ARA [American Rheumatism Association]defined remission was rare, constituting 7% of follow-up for the entire cohort. For those 20% achieving remission, this period represented 34% of their follow-up. A total of 56% had a relapsing-remitting disease pattern and 44% had a persistent disease pattern.” Additionally this study states that the average length of remission is roughly 20.5 months. Bearing this in mind statistically my chances of remaining in remission are slim, but we knew this from the get go. Regardless of whether my RA is active or this is a blip I will continue to attend school full-time and fully intend to graduate on time and continue to pursue ASL for as long as I can.

http://rheumatology.oxfordjournals.org/content/37/12/1324

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