My Time Away is not a Vaca... in General Mental Anesthesia

Apologies for my absence.

I had another GI visit on Monday (and I was also supposed to start Humira, Moday) but my first dose (considering my current health what it is) is a major dose (4 injections) and they wanted to do the first series in the office.

Now, 7 weeks ago, I had a cough (which became bronchitis). Ulcerative Colitis being an auto-immune disease makes getting over any illness extremely difficult, combine that with Prednisone (an immune suppressant, especially at a high dose (60mg) and long term (2 years)) exacerbates that greatly!

Waiting for test #1…

I was given Tessalon Pearls for the cough which I’ve had before (200mg) but it was a week’s worth and no refill. After the week, my cough was 80% better and stayed that way for another week before getting worse. Now I’m right back where I started nearly 2 months ago. Because of the cough, they couldn’t start the Humira. (Another immune suppressant btw…) Instead I had to go to the hospital for various tests. A tuberculosis test, chest x-rays etc… The hospital wanted to put me on a breathing apparatus, but I had already been there for hours and just wanted to leave (while I still could).

After the TB test and waiting on getting chest x-ray’s. You can see where the test was done via band-aid.

I did have a tb test back when I was hospitalized for 16 days this past March, but I was so out of it, I didn’t remember getting it done. Either way, the test was “inconclusive” which my GI thinks was caused by the Prednisone. In the hospital, I was on 120mg/day. I’m still on Prednisone, a high dose (currently at 40mg) so I don’t know how or if that will affect Monday’s test. I’m so frustrated!

On the way home, my Gastroenterologist called me, but didn’t leave a message. Dr’s don’t generally call with good news (no news is good news) and they never leave bad news on a voicemail. So… I don’t know what the deal is, guess I’ll find out tomorrow, but I do know that the tuberculosis test takes a couple of days. If you have never had one, it’s an injection in the (tender) inner forearm that creates a bubble under the skin. After a couple of days, if the bubble becomes an indentation, that’s bad new apparently. I just took the band-aid off, it’s flush at the moment.

The Dr. can’t start the Humira if I have any sort of infection as taking the medication will make it worse and it can ‘CAUSE’ Tuberculosis even if I don’t have it, but do have an infection while taking Humira… Geez, I just want to see my homeopathist in So Fla and say “to hell with all this whacked out bullshit already!!!!!!!

Like always, it’s another waiting game, but I wasn’t hospitalized, so that’s good. And I have a new script for Tessalon Pearls, this time with a refill, but only at the 100mg dose :/ When will Dr’s learn???

There’s more, but I’m exhausted (I’ve had 17 nights of zero sleep so far in June) The nights when I do sleep… it’s less than 2 hours. :’(

If anyone wants to send me a Kit Kat bar (I’ll give you my addy) because Jay needs a break!!!

I Need All The Help I Can Get

Share’s of the above link are still of course welcome as I can not work and although I’m receiving financial assistance for the Humira; I don’t for my $316 GI visits every 4-6 weeks (which do not include tests / other meds). The chest x-ray’s alone were $275. I’m still quite far away from getting the help I need because of my constant failing health; I simply haven’t been able to keep up… so the more you guys help me share the gofundme link and get others to share it, post it, promote it etc… the better the odds of getting donations and with enough donations, I know I can turn this all around!

I also want to say “Thank you” to my friends and those that just randomly find my posts and comment etc… here on PB for all of your love and moral support over the past couple of years (a ridiculous amount of time) but you guys have always been there and I’m truly grateful!

ADDENDUM:

I spoke to my GI office today (or tried to throughout the incessant coughing). The phone call was to tell me that my x-rays were negative. So I’m a go to start Humira on Thursday even though I’m coughing and have bronchitis. :/ Yes, I’m worried. It’s also when I’ll find out the results of the tuberculosis test I had done. It just looks like a bruise right now.

Can you believe though that my GI office was going to charge me another office visit this Thursday (tomorrow) when I just paid to see them Monday? They don’t want ‘me’ starting Humira (because I need 4 injections at the same time) without them showing me / explaining things to me etc… and doing it themselves the first time.

Thursday is NOT an office visit! I’m not seeing my GI Dr. Just someone that deals with Humira and does the office lab work. I was not happy on the phone, I told them I’d just stick myself because truthfully, I can’t afford these visits. They put me on hold then came back and said: “I just spoke with the office manager and we aren’t going to charge you anything on Thursday”.

Damn right you’re not!

Here’s a picture of me every single time I have to talk to a Dr or to a Dr’s office…