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Inside Out


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Hi everyone.. I have decided that I am backwards, or inside out or something. Seems that things have the opposite effect on me.. say medication, non drowsy..will put me to sleep. Or if I get a sinus infection, it seems to be 100+ times worse for me than the average person. I have had this for 4 1/2 years now.. And honestly I feel like at times I am loosing it. My bad days are about 50/50 to the good. So that is good, at least I have spurts where the times are good. However, I feel like I am loosing this battle. I see myself change daily. I often wonder why, how, when things will go from bad to worse. I have often said to my family, it won't be pots that kills me.. It will be something simple like an ear infection. Or an allergic reaction to something..

I thank God for this place.. Not for the fact that so many many other people suffer with this illness, but I thank him for being able to talk to others, to know I am not alone. To know that I am not the only one on this planet who is inside out.

Jan (and I have as of tomorrow morning, the 26th, made it to my 40th birthday)

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Happy Birthday, Jan! :)

No, you are not alone with med reactions and "kooky" body stuff. I have so many allergies, I need a wheelbarrow to carry the list it seems! (then I run into "brilliant" ER docs who ask me why I have so many allergies......ARGH! :) )

I agree, I have said to my family it won't be POTS that kills me (although, right now, POTS + cold/flu=pretty close) but some infection that will be antibiotic resistant, since I can only take about 2 types of antibiotics. Or it will be some other weird thing....I will faint and split my head open.....gosh, if I let it, the list of my fears about this could go in that wheelbarrow, too! It's scary to feel your body coming unglued, huh?

Jan, I hope you will feel better and stay strong in your faith and hope. I am grateful for this forum, too. Even though no one here can cure me, it helps to know I'm not alone and to have some support. I have had it for 8+ years (probably longer) and shudder at all the times I have truly believed that that day would be the day I just LOST IT (sometimes it's an almost-daily occurrence!). I wonder if I'll ever really get better, too. I guess we just have to take one day at a time, or hour at a time, as cliche as it sounds. What else to do?

I wish you a very merry birthday and a year of joy, continued courage and strength,

with love and light,

Lulu :)

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