An Update

Hey Everyone. I really wanted to be more proactive with this site and document my journey a little more. Unfortunately, with being denied STD and having to fight with that, and additional appointments added into a short time frame, I wasn’t able to keep everything updated as I had hoped. I’m still planning on recapping some of the testing and experiences I’ve had throughout this journey, but didn’t want to focus on the negative emotions I’ve been dealing with. Now that I am in a better place emotionally, I’ll update more often. 

Been feeling extremely awful lately. Not sure if it’s the stress, the lack of actual nutrition, or my condition actually getting worse. The big test we’ve been waiting for (the upper endoscopy and colonoscopy with biopsies) got canceled morning of procedure due to the anesthesiologist not being comfortable with a family history of malignant hyperthermia and complications, although the sedative they were planning to use typically doesn’t cause any complications with MGHT. I was told when I scheduled that they had the best anesthesiologists and it was already noted by my doctor to be prepared, but unfortunately that wasn’t the case. But I guess it is better to be safe than sorry, especially in the chance that I do have it. Only testing or a bad reaction could tell me, which I’d rather not go through it to know and the testing is not covered by insurance (and would have to be sent out of state). So the doctors are playing it safe and meanwhile I’m in pain. But I guess when you’ve waiting FIVE years, another week and a half is no big deal. I’m just ready for answers.

And as scared and anxious as I am about this procedure, I know I HAVE to do it to hopefully see what’s wrong. The CT Abdomen and Pelvis did show possible Nutcracker Syndrome, a renal cyst, and a small umbilical hernia. At least that is something. Finally found a specialist to see me to assess, but unfortunately is ALSO an hour away from home (like my current doctors), but in the OPPOSITE direction. They seemed super nice when I called and hopefully the Urologist will be great. As far as what my GI doc says, it could explain all, some, or none of my issues. So we shall see, but luckily I will have more answers (either towards and away from some considered diagnoses).

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