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Almost Human

safe

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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Hormones Gone Wild

Morticia

Today I met with a hormone specialist due to a suggestion from my mother. She told me she had low thyroid and it was likely genetic and urged me to pay a visit to her doctor, good call mom. After some blood tests and thyroid tests it was determined that I have incredibly low thyroid and the metabolism of an elderly sloth. This explains why I can’t seem to lose weight no matter what I do and why I have such bad fatigue even when my fibromyalgia is under control. I start taking adrenal support supplements, iodine treatments, and thyroid medication this next week and anticipate positive change. They told me I may feel better immediately or it could take several months, I am hoping for the former. They also told me my difficult periods and fibrous breast tissue is related to most of my hormones being out of whack and even explain my nausea and vomiting! As a result of this information I am thinking I will postpone my endoscopy for a few months and see if this helps the nausea. Something that was interesting was that my blood results mimicked those of someone with Hashimoto’s which is an autoimmune thyroid disease. I say mimicked because the doctor felt the high inflammation and white count were results of the RA/RD and sjogren’s. So that was interesting, he wants to keep an eye on it to ensure I do not actually have Hashimoto’s. In short I’m very glad I listened to my mother and look forward to feeling more like a functional person.

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 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].

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

PRC Graduation!

patrick the wombatHello to all! I can now happily say that I’ve completed my 120 hours of chronic pain management courses and have safely driven back to Oklahoma. I apologize fo such a late update, I’ve been up to my ears in school work and rehab related stuff.

Alright so I graduated from PRC along with one of my good friends I met in PRC, there were tears and encouragements as we left. I was legitimately surprised by the overwhelming support I received upon my graduation from both PRC patients and the PRC staff themselves, honestly it was emotionally overwhelming but also the most support I’d ever felt in my life which really encouraged me as I prepared to go home. Prior to my departure I met with occupational therapy, physical therapy, and my care nurse. When I met with OT we discussed how I would adapt to life back home and how exactly I was going to moderate and modify my life. During my OT meeting it was determined that I am overly involved and needed to scale back, we identified what activities I partook in that could ne modified and what had to go. When I met with physical therapy I completed all the PT tests I had done when I first arrived and my improvement was drastic! PT helped me evaluate what tools I would need to exercise at home. Finally I met with my care nurse [who was fabulous]. My care nurse and I evaluated where I was at overall in terms of PT, OT, group therapy, cognitive behavioral therapy, and medication management. I chose to leave both my Tramadol and Vicodin at Mayo Clinic and go home pain-killer free. It has been a challenge but by no means impossible. Coming home was more difficult than I thought it would be. Not being surrounded by like-minded people who support you in a particular way that only one in a similar situation could provide is difficult. I was doing all my PT exercises until I over did the running aspect and appear to have developed a bunion [which I’ll deal with eventually]. I am still getting back into the swing of things and am worried that 2 summer classes overlapping will be hard for me [that started today] but I know I can get through it. I’ve had a couple bad days since being released from Mayo and I’m not going to lie, I wanted my pain medication. However I managed to get through it with the use of biofeedback and diaphragmatic breathing.

I would like to thank my friends and family for being so supportive of me and helping me get through. Additionally I would like to thank the wonderful individuals I met in PRC who have encouraged me and supported me through my struggles. Without the support of certain individuals I met at PRC I’m not sure I would have made it through the program, I’ve kept in touch with several of them and intend to offer support to them as they did to me.

My ukulele got here in the mail, her name is Penelope and she is bright red. Regrettably my hand stiffness is acting up so learning to play has been temporarily halted BUT I shall prevail eventually! Additionally when I have time I hope to add copies of my graphs showing my progress at Mayo Clinic soon.

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