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Tag Archives: rheumatologist

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.

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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.

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.

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

Hand Adventures and Wedding Jitters

fkphPSrSo first of all I would like to apologize for the lack of posts lately. My wonderful fiance and I will be getting married August 1st, 2015 and things have been crazy. Now when planning a wedding for not one but two people with chronic conditions it can feel like a huge game of chance. Luckily I have had a lot of help from both our mothers and an amazing MOH who has helped plan for everything imaginable. I’m looking forward to a nice relaxing honeymoon and some time with my new husband.

Hands, they matter. You would think this would go without saying however in the last two months my hands have been the biggest party poopers ever. Not only are all my fingers almost entirely numb but I keep dropping things due to the fact that I can’t feel how much pressure I’m applying when gripping something. So yesterday I went to see my neurologist for my botox injections and while getting them told her what was going on. At first she was a little vague saying it could be a lot of things and not to worry. She had a knowing look on her face that gave me the impression that she had a more specific idea of what could be causing this. After a bit of prodding she told me she thinks it could be a few things, the most likely being neuropathy due to rheumatoid arthritis. She explained that most RA patients eventually develop peripheral neuropathy due to the inflammation of the vessels in the hands and feet. She didn’t want to put me through a neuropathy test 10 days before the wedding so I will be going back in a month for some extensive testing. She did say that if I am just now developing neuropathy it could be a sign that my RA is less well controlled than we previously thought. Between that and the issues with my foot [also tied to RA] signs point to me possibly no longer being in remission. That being said just over a week ago I saw my rheumatologist who told me that my hand numbness wasn’t her department. She did however strongly agree with my upcoming foot operation but warned that it would not be an easy recovery. I will post updates as information rolls in.

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

Let It Go

i have loved the stars too fondlyWhelp this winter just keeps on punching me down. Everytime the weather starts to improve a massive cold front comes through and knocks me on my ass. This last front was no exception BUT I did do something pretty awesome yesterday, I woke up with burning/stabbing pain [as I do] and decided I was going to do life as planned. This happened to include work, a long meeting, class, and a massive test [which I got a 92% on]. I did all of them and then crashed hard. My sympathies go out to those who are also struggling after storms Hercules and Pax brought in these aweful fronts. ANYWAYS, so I started trying to get in contact with my neurologist [my rheumatologist thinks this is all Fibro no RA this round], after multiple calls I finally got a hold of the nurse and asked if we could increase my Lyrica due to feeling like I’m “in a hamster ball of staligtites and lava” [the burning sensation is new] and “brain fog that makes alzeimers look tame”. She assured me she would call me back ASAP as she talked to the doctor and FINALLY called me back today telling me that they were going to change me from 150mg to 200mg of Lyrica and see is it makes a difference, I really hope it does. While I fel like a boss when I play life on hard mode I would rather not. My most fabulous and awesome boyfriend will be with me Saturday and will be hanging out with me should the extra 50 mg knock me on my butt.

I have been attempting meditation as a way of coping with the pain [pain pills really aren’t doing anything]. In attempting to find some suggestions online I happened accross something called a  “float tank” [http://imgur.com/gallery/7rZco], it was suggested that this may help with the chronic pain situation, if not by helping the pain itself than by helping calm me. It’s a scary realization that you are literally trapped in a body that is trying to destroy itself. Knowing there isn’t a way to just walk away from the situation is enough to make anyone panic a little. On my last trip to the ER I started panicking when I realized the doctor was not going to help me and my boyfriend had to calm me down. Needless to say, I need to figure out a better way to deal with it. I am hoping to give the “float tank” a try the next time I’m in Dallas, the downside is it is roughly $85 a session… It’ll be great ya’ll 😀 I will update with news on the Lyrica adventure.

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