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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.

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Bed Rest: Week 1

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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.

Battle Report

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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.

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.

Finals Are Coming

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Hello my lovely friends! I have several bits of news to share:

FEET: AKA Foot Adventure [Part 2]

Alright, so I went to the orthopedic specialist in Oklahoma City with the hopes of getting some help with my foot pain. After some extensive x-rays and an hour wait a resident showed up and asked me to explain my pain. I said, ” the pain is behind the bunion right here [point to big toe joint]”. He looked very confused and asked if I was sure, I assure him that as the keeper of my foot I am certain. He says he has to review my x-rays and disappears for 30 minutes. Then the actual doctor came to see me asking me again to explain my foot situation. I tell him the whole pain here [point to joint], not there thing. He asks if there’s exterior pain on the bunion itself. I explain that it is a little painful but the joint hurts worse hence all the steroid shots. He then tells me he has to review my x-rays and disappears for 30 more minutes, at this point I have missed my classes and am not thrilled. When he finally returned he didn’t look thrilled, he explains that my x-ray reveals no RA related joint damage. I all but scream “yay I’m not getting frog feet!”. I then explain that frog feet it what I call it when late stage RA runs your feet making them fin like. I asked him why this wasn’t extremely good news still just excited that frog feet aren’t in the cards, he explained that the x-rays provided no insight into the cause of the pain. I’ve been scheduled for an MRI on Thursday in the hopes that some sort of edema will become apparent on the x-ray. We are to reconvene next week to go over the images and decide a course of action. While this wasn’t the most productive trip one thing he told me was worth the hours of waiting. He said, “Maddie, I assume that you haven’t travelled all this way and endured foot spacers, orthotics, drugs, and foot injections for the fun of it. I believe that your foot is hurting you and while I can’t make any assurances I would like to help you”. That alone makes me want to work with him in the future.

BELSOMRA:

I am now a little over a month into Belsomra and have the following the report. Over time my ability to instantly fall asleep has dwindled but I am still falling asleep in less than 30 minutes. I think this could be related to my stress level right now [wedding, finals, etc…]. I am still experiencing NO and I mean NO side effects! My sister has also begun taking it [also an insomniac] and is responding to it well also.

FINALS:

This past semester I was attending every class until about half-way through when I started having health issues again. Because of this there are a couple classes with grades that could use a boost. This week is dead week and I am taking both halves of my ASL final this week. Next week I have my math, children’s lit, and health exams. I’m getting to the point where I’m overly stressed and am actively working on that.

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