Poor mommy has to deal with my strict diet when she’s never had to do that before. I don’t like it either but my doctor is mean and abusive.
#XLH
#raredisease
#crysvita
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#XLH
#raredisease
#crysvita
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The thing about XLH is it makes no sense. One week the left knee hurts, the next week the right ankle hurts.
#XLH
#raredisease
#crysvita
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Uuugghhhh!!! So annoying my knee is still giving me problems! Knee brace and rest all day when I have stuff I wanna do is no bueno!
#XLH
#raredisease
#crysvita
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Damn knee decided it’s had enough of me me.
#XLH
#raredisease
#crysvita
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Was supposed to have a fasting lab today but it snowed and I’m driving in that. I’ll do it tomorrow.
#XLH
#raredisease
#crysvita
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Got my medication ordered and set for delivery on Saturday!
#XLH
#raredisease
#crysvita
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Of course United Health denied my medication.
#UnitedHealthSucks
#XLH
#raredisease
#crysvita
xlhnetwork.org
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Tomorrow is a fasting lab. No food or drink before the lab work then I can eat and drink what I want!
#XLH
#raredisease
#crysvita
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I just want everyone to know my hip hurts really really bad.
#XLH
#raredisease
#crysvita
xlhnetwork.org
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I had a good doctors visit! She’s happy with my progress and these old bones are healing!
#XLH
#raredisease
#crysvita
xlhnetwork.org
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Oh my gods, my nurse is going to be here in an hour and I need to pick up this apartment!
#XLH
#raredisease
#crysvita
xlhnetwork.org
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Really hope a new mattress and box spring will help with this back and hip pain. It's hard being old with a rare disease.
#XLH
#raredisease
#crysvita
xlhnetwork.org
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I have lost 30lbs! Guess my doctor riding my ass about my diet and physical therapy has paid off. Also, my doctor is mean and abusive.
#XLH
#raredisease
#crysvita
xlhnetwork.org
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I am honestly say that fasting labs are my least favorite labs.
#XLH
#raredisease
#crysvita
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