Ehlers Danlos Syndrome and Snow Storms

Ehlers Danlos Syndrome and Snow Storms

I’m on day 3 of terrible headaches and joint pain that’s worse than usual.  My Ehlers Danlos FB group is filled with members reporting the same thing.  They all agree that the incoming winter storm is bringing us headaches and extra joint pain.  It’s another symptom of Ehlers Danlos.  This has me thinking of moving to Florida!

Living on the East Coast and preparing for a “historical” snow storm, means going to the store and standing in line with all the other southerners who think they must buy about 3 weeks worth of food.  So, we couldn’t even get our normal weekly shopping list filled….ugh.  There wasn’t even one can of chicken broth in the entire store!
Unfortunately, I’ve been unable to help around the house this week.  I’ve been so tired and have taken many naps.  Hubby drove me to the allergist.  Seeing a different doctor this time was a little nerve-wracking, but he was wonderful.  He agreed with all of my diagnosis’s, including the Mast-Cell disorder.  He felt that my auto-immune disorder was probably a lupus disorder, but not conclusive.  He doubled my Mast-Cell medications and changed my “as-needed” medicines into “needed”.  So, I’m taking many more pills.  My pill box is much bigger and my stomach is soooo sensitive to all these pills.  The first night I took them, I woke up kinda vomiting a little.  But, then I was ok.

I’m trying to spread out the pills and take them with plenty of food.  This plan is why I keep gaining weight, though.  The side effects aren’t so great either, including what I read about the long-term side-effects.  I always said I didn’t ever want to get like this……living on pills.  But, what is a person to do.  You’re hurt if you do and hurt if you don’t.

Taking medication is not for a cure, but just to improve my quality of life.  There is no cure for Ehlers Danlos.  We are only able to treat symptoms, such as pain.  So far, I don’t feel like I’ve gotten to a point of real help.  When I get to a point of feeling better, then some other disease attacks.  That’s the problem: we usually don’t just have EDS.  Having an auto-immune disorder, Mast-Cell disorder, POTs, chronic migraines, and more, means that something is always flaring or bothering me.

That’s why I say I’m chronically ill.  I want to be all better.  I try to psych myself up to do what the inside of me wants to do each day.  I just can’t “Will” myself to do that.  So, I’ll continue to get up and do things when I can.  I’ll rejoice when I can cook, clean, change the sheets, or whatever!  I love being able to do a normal activity 🙂  Try to be grateful for the days you can live normally.  You never know when that may be over.  God is good to give us our days, and I’m so thankful to be alive!!!
@2016, copyright Lisa Ehrman


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