Self Expression Magazine

For My Health Groupies…

Posted on the 27 December 2011 by Drowqueen @theburnedhand

I haven’t posted a health piece in a while, but I found something many of you would find interesting.  I feel that it is important to stay in the know about whatever condition you have.  If you use the search button on my blog, you can look up things I have written about Hashimoto’s disease, porphyria cutanea tarda, and hereditary hemochromatosis, or the “Celtic Curse” as some have nicknamed it.  Even if you don’t have these conditions, it is always good to get regular blood work.  I certainly never dreamed at the age of 22 I would be diagnosed with PCT; however, it is what you do after a diagnosis that matters.

Phase one: you go through many emotions.  First, you think the doctor is wrong or some underpaid lab person has totally messed up your results.  Next, you do what the doctor says NOT to do.  “Don’t Google this disease until we are certain.”  Ha ha ha.  Yeah, that was funny.  As soon as I told my mom, between the two of us we had read everything there was written at the time on porphyria.  That was a fun evening.  Finally, comes the acceptance of the results.  You already knew that every symptom sounded like you, but sadly, you didn’t want to admit it to yourself.  You are now ready for phase two, living with the disease.

Someone posted this in one of my groups, and I think you will find it true…Health Central has an article on the top 10 things not to say to a Fibromyalgia patient, but it actually applies to all chronic pain/fatigue conditions.  Try not to wring the person’s neck when they tell you to get more sleep. Oh yeah, and for some of us, the part where someone says at least it’s not fatal, well it can be if it goes undiagnosed. We know you mean well.

“I’m exhausted trying to stay healthy.”  ~Steve Yzerman

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