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Tag Archives: chronic

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.

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Throat Ulcers: Because why not?

money slothThroat ulcers, because why not. My throat has been killing me for 2 weeks and I’ve been toughing it out until today. I went to the urgent care near my house [I don’t have a GP in town yet] and it took him all of 10 seconds to tell me I had major throat ulcers that “could have been brought on by anything’ I then told him about the chemo vs. thrush sores that have been an issue and he said it wasn’t related to either but could be RA based or a complication from the immunosuppressants. He said it could be a long term issue and that he could treat but not cure them. So as the situation stands I’m just using a ton of magic mouthwash [which is a liquid combination of Lidocaine, Kenalog-4, and diphenhyd] and hoping for the best.

Exhaustion

states that partyIf you’ve ever pulled an all-nighter [or two in a row] you know the true meaning of exhaustion. Now imagine feeling like that most of the time with no way of making it any better. No matter how much coffee you drink, what you eat, or how much you sleep you will continue to feel like you ran 20 miles with lead weights around your ankles. The biggest issue with this [besides feeling gross all the time] is that you have to ration your energy for the day. Some days you start with more energy than others. It’s frustrating fo all involved, sometimes I feel like if I could just pause life so I could take a nap and rest that then everything would be better. I wonder if my particular fatigue is potentially fibromyalgia [I have other Fibro symptoms as well] or Chronic fatigue syndrom [CFS]

This woman explains chronic fatigue way better than I ever could. I strongly recommend reading this if you or a loved one is chronically ill.http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Advice for chronically ill patients: Take life slow as much as you hate it be kind to your body.

Advice to friends/family of patients: Don’t push activities, be understanding, maybe plan a night in with a rented movie. Staying in is always easier than going out [it seriously makes a real difference energy wise].

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