Well I didn't sleep as well last night as I did the prior two, but I did sleep some which I'll take. Yesterday started out so well, but in the end it was Wed the 11th, not Fri the 13! Worse I think..the jury is still out.
Here I sit waiting for Kolym, nothing new to report. I was actually contemplating having my Lawyer draft a letter to AARP informing them if something should happen to me while they drag their feet deciding if I'm worthy of a New and only FDA approved drug to treat my unknown and rarest of diseases, that I would hold them financially accountable; but then again that could simply be my Roid Rage acting up again.
Its one thing to be sick, to not feel well, to have to push yourself everyday to accomplish things that the average person takes for granted, but then have to fight an insurance company or pray your Doctor finds time in his busy schedule to facilitate the necessary information needed by said insurance company is just so exhausting in and of itself.
Since it's out of my hands, I think I'll curl up to my Kindle outside today and catch up on a novel that has been calling my name for awhile.
HI CYNDIE MY NAME IS STACEY. GLAD YOU ARE WILLING TO SHARE YOUR STORY! hOPEFUULY YOU FIND IT A GOOD OUTLET AND AA WAY TO INFORM OTHERS. I SEE THAT IT TOOK YOU 5 YEARS TO GET A DX. I REALLY CAN BELIEVE THAT. I HAVE BEEN STRUGGLING WITH THE HEALTH CARE SYSTEM FOR MANY YEARS. I AM DEALING WITH CHRONIC PAIN ALL OVER MY BODY, RAPID WEIGHT GAIN 60 LBS IN ONE YEAR, SEVERE JOINT PAIN, SWOLLEN AND PAINFUL LYMPH NODES, SWOLLEN FACE TO THE POINT I HAVE PERMANENT MARKS ON INSIDES OF CHEEKS WHERE I HAVE BITTEN THEM. i RECENTLY HAD TO HAVE GALL BLADDER REMOVED AND SURGERY FOR FIBROIDS AND ENDOMETRIOSIS.i CAN'T KEEP A JOB BECAUSE I AM SICK ALL THE TIME, THE WORST BEING BODY ACHES AND FATIGUE. nOW DUE TO WEIGHT GAIN I HAVE OSA AND HAVE TO USE A BIPAP MACHINE. I HAVE BEEN GIVIN ALL SORTS OF DX, DEPRESSION, CHRONIC FATIGUE, FIBROMYALGIA, PTSD
ReplyDeleteTHOSE ARE SOME THAT I HAVE BEEN TEATED FOR. ON TOP OF THAT I HAVE RESTLESS LEGS, ASTHMA, ALLERGIES, AND BOUTS OF VERTIGO. IF YOU CAN OFFER ANY ADVICE AND CAN RELATE TO ANY OF THESE SYMPTOMS PLEASE HELP, HOW DID YOU GET THEM TO FINIALLY LISTEN.
ReplyDeleteHiya! I've just found your blog and been reading through. Good luck getting the Korlym, I hope they get their act together and you get your medication. Is there any news on that front?
ReplyDeleteI have a pituitary tumour myself - not Cushing's though, mine's a thyrotropinoma, so it produces thyroid stimulating hormone instead of ACTH. I saw in your earlier posts that you go between being hypo- and hyper- thyroid, are your doctors sure this is to do with your thyroid gland and not your pituitary? My tumour sometimes is active and sometimes isn't, so I alternate between being hyperthyroid and normal. It's a tricky thing to diagnose though, I had so many thyroid blood tests before they worked out what was going on!
Anyway, don't know if you're interested but I blog too at http://www.pituitaryademoaner.blogspot.com if you're interested in comparing experiences sometime!
-Emer
I have Graves and Hashimotos, my Pit TSH is usually normal when my T4 and T3 are normal. Thank you for the comment!! I will Definitely check out your blog!!!
ReplyDeleteStacey, Getting through the Health care system is so difficult. They tend to want to treat every single ailment instead of looking at the big picture as like a syndrome such as Cushings, or Lupus, or Insulin resistance. Have you had any cushings testing done?
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