Wow! My last entry was all over the place! And you ain’t seen nothing yet!

I owe you all apologies, but if you came here to read the bits ‘n pieces of a person’s life, you’re in for one hell of a ride! Lot’s of media for your viewing pleasure as usual. Hop on.

Oh and welcome DE’ers!!!

First, allow my to apologize for not writing since mid February. To my regulars, yes, you are correct in assuming it’s bad news… A LOT of bad news and yes, it’s unfathomable to think about if you’ve been following me since the beginning.

This ‘update’ will not be 1 page, or 2 or 3 or 4… so buckle up buttercups, it’s story time!

I’ll start off by saying (I’ve been writing this now for a couple of weeks) I can only do little bits at a time because I’m going through so much nausea & dizziness that I can’t look at words or at the screen for more than a second or two at a time. I’ve been dealing with (and still am) dealing with severe, chronic bronchitis, so trying text to speech etc… has it’s challenges with non stop coughing. Physically, I can’t even use my fingers most of the time… But I digress, let’s go back a few months shall we?

FEBRUARY, 15, 2019

Just hobbled into orthopedic surgeon’s office, getting x-rays and more, trying to fix my literal broken body.

The colitis, blood work, chemo, hematologist, urologist and all those other Dr. Appts I absolutely hate!!! This one may inevitably end in a lot of pain, (not today, but at some point) but I can grin and bear it (surgery, therapy etc…) much better than the rest. Happy to be getting things looked at.

ADDENDUM: Gee wiz… Getting lab work done now (blood draws) at ortho… Only me… 😞

ADDENDUM 2: That was one of the most painful blood draws I’ve ever had! She was NOT gentle! Instead of pushing the needle in, she STABBED me! I actually thought the needle went clear through the vein.

Instead of a normal draw where it almost feels like the phlebotomist has to pull the blood out; this time it felt like I could’ve sprayed the entire room with blood… there was a ton of force behind it! It was and is, unpleasant.

She also did a shitty job wrapping it up.

FEBRUARY 18, 2019

It’s that time of the month, chemotherapy for colitis… Because my former primary care Dr. wouldn’t send the forms to Medicaid, I couldn’t get any home care and with how incapacitated I am the 2-3 days after these treatments, I’ll be fasting over the next 48 hours +.

… and to think, on Thursday I have to have a CT scan with contrast (to which I have to fast beforehand (damn I’m going to be hungry!!!)) and my veins (if you’ve watched the videos on my previous update on PB) I don’t do 20 gauge needles very well!

Time to man up, and probably cry uncontrollably.

FEBRUARY 20, 2019

I can’t wait until I no longer have to see a Gastroenterologist. They’re just idiots!

I personally believe that you shouldn’t be allowed to become one unless you suffer with IBD or some sort of gastrointestinal disorder. Anyone can learn about it from a book, but unless you suffer with it, you can’t possibly fathom what the patient is going through; it’s impossible!

I can talk your ears off on what I’m dealing with and still, you’ll get maybe 10% of what it’s REALLY like.

I have no qualms about being alone, but these last 2 days post chemotherapy are tough man… Having no help at all… I can barely open my eyes and lift my arms, let alone drive to Dr’s appts.

I always knew what it was like having read about it in books, medical websites and through the personal stories of others, but now that I’m going through it; I have a completely new understanding of the HELL your body goes through. I just feel wrecked!

So, I had an emergency GI appt today (funny how they have no appts for months, but as soon as you have an allergic reaction to chemotherapy that only 3% of patients get, BAM! An appt opens up…) freaking magic!

I told them I wanted to stick with it, I mean… I know more then they do or so it seems. I’m directly quoting from the infusions website that only 17% of patients feel any positive effects for the 1st 6 weeks to 3 months; and only 42% after 1 year of treatment. I just had my 3rd and they’re surprised I’m not better. Seriously? Then she went to go verify the information I sprung on her and when she came back she said, “ok, we’re going to keep you on it for another few months and then we’ll re-access the situation”. Basically saying: “You were right”.

It’s clear to me that Dr’s in general don’t like when their patients are knowledgeable about their illnesses, medications and healthcare. How can you not have a vested interest?

But here’s what I mean about GI Dr’s that don’t have IBS / IBD. She says: It looks like there’s been a slight improvement. Really? ok. I just got done telling her that I’m bleeding more now than when I saw her last, the pain was the same and I’m still going to the bathroom 10-12x/day. She followed that up with: “Last time you were here, you were going 15-20x/day”.

This is where the line has to be drawn. When I was going to the bathroom 15-20x/day on average, I still had the occasional day where I might only go 5 or 6x (but even when you go less, the pain is just as severe, sometimes more severe). Just like now, I might have a day when I go 17 or 18x. It’s irrelevant unless I can also say the pain is less, I can be more active, I’m sleeping at night, there’s no bleeding etc… It’s a package deal. If you’re truly improving, you’ll improve in all areas on a consistent basis. She would know that if she suffered as I do.

And I say “she” but it goes for every GI Dr. I’ve EVER seen. Not one of them in 26+ years ever had a GI issue and NONE of them understood what I was going through.

Tomorrow I have the ct scan with contrast and as discussed here on my pb page this past week… I fear that it will not go well as it never does. Video’s are posted (again in my last entry on here) if you dare to watch why I say that. In the meantime, I need to fast, rest, and just
feel crappy. These first few days after a chemo infusion truly are difficult, Flu symptoms, I’m not gonna lie… I can’t lift my arms, I have no strength, sweaty, I can barely keep my eyes open (yet I can’t sleep) but I could really use a hug or two.

FEBRUARY 25, 2019

Going in to the CT scan with contrast… those that read my posts understand the difficulty, so I asked for a heated blanket to wrap my arm in to try and dilate and raise the veins to hopefully make things easier and less painful.

I wrapped my right arm because I’ve had 4 or 5 blood draws in the past month, mostly in my left; of course… after several failed attempts in my right arm… they had to go into my left anyway.

My life…

smh

FEBRUARY 28, 2019

Well… I did what I’m very much against doing.

I had a VERY painful medical procedure just now at my urologist. I don’t want to talk about it, but I’ll tell you… (and I was well aware of the risks, such as death) but because they were unwilling to knock me out, I went to my new primary care Dr. explained the situation and how my anxiety was through the roof and long story short… I took a Percocet and a Xanax to try and be as out of it as I could be. For those of you who know me: I HATE DRUGS!!!

It was like getting a colonoscopy, but in a different body part… Except they knock you out for those and I had to be awake for this!

Despite the danger, the meds were working too, I was extremely drowsy. However… once the procedure began… I was completely sober! I mean, I am wide f*cking awake right now! I still couldn’t drive, but I am far from relaxed; I wish I was though.

… and I hurt.

The good news, no cancer. The bad… We still have no idea why I was bleeding so profusely a few weeks ago. 😕 Now I have to pee (PTSD)

I hope you can all avoid days like this!

For my real story summed up (with 38 updates and counting) Please visit:

TRYING TO SURVIVE

To be continued…

Last updated June 12, 2019