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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.

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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.

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.

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]

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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.

The game is a foot [Foot Adventure Part 1]

not today satanGreeting my fantastic friends! Today we will be talking about something new and different: feet! As some of you may know I have developed a bone island and bunion on my left foot and started getting one on the right. I’ve been getting steroid injections into the big toe joint for almost a year and my doctor has informed me that I’m “above his pay grade”. I’ve been referred to an orthopedic specialist who works with individuals who have rheumatoid disease and foot issues. We are hoping he may be able to come up with a non-surgical alternative. The typical treatment for those with increasingly worsening bunions are as follows [in order from most conservative to least].

  • Change in footwear [Done]
  • Braces, spacers, orthotics [done]
  • Daily NSAID [done]
  • Steroid injections [done]
  • Surgery

I will update with how things progress. Fingers crossed that I get some guidance on this. Also I would like to give a shout out to my amazing fiance who after watching me limp around and rubbing my gross feet encouraged me to seek out a better solution.

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