More continuance from my absence ranging from of course #1 - #6

MAY 31, 2019

Due to many #Health issues, constant pain, #depression, #ulcerativecolitis & #dental issues because of it; a very common issue with this disease. I haven’t smiled in over a decade (actually closer to 15 years). Having gone 22 years without health / dental insurance while living paycheck to paycheck; what should be a necessity for everyone became a privilege. It’s painful to even admit.

But I do miss it. I want to smile again someday soon & not just on the inside.

I like these pictures… reminds me that I have had good moments in my life.

If you can smile, never hold back!

If you can’t… I totally understand & hope that you can and do again soon.

NationalSmileDay

JUNE 3, 2019

Now let’s delve head first right back into the muck, shall we?

Just left the pulmonologist. More tests, more blood work, need a 3rd CT scan (some kind of special scan… Idk). I’ve never smoked or done a drug a day in my life! And they suspect I may have COPD! G-Damnit!

I’ve had bronchitis now for 7 weeks. My resting heart rate is averaging in the 130’s. Today is 137; Dr is concerned about a possible heart attack.

The CT scan won’t even happen until Aug 29th.

The waiting is the worst!

I don’t feel my age, I can’t even breathe without pain. I don’t just have inflammation in my lungs, but in my back around the left side all the way to my chest. Tight, sharp pains! Pleurisy, I believe it’s called. #ulcerativecolitis of course is also responsible. In very severe cases such as mine, the inflammation can travel outside of the colon. It’s like a war zone in that if you have a weak area in your body (such as bronchitis) the Uc travels there and attacks you! That’s what autoimmune diseases do, they attack your own body.

I feel ravaged. Words can not describe what any of this is like.

Btw… Can I just go one month (ONE MONTH!!!) without being stuck with needles???

Geez Louise man… give a guy a break!

😥

PLEASE GIVE A GUY A BREAK HERE

JUNE 6, 2019

Pulmonologist called me today. Results came back from some of my tests.

*”Can you come in and see me today?”

“Today? Really? When?”

“I can get you in, in an hour”

“It’s going to take me an hour to get there”.

“We could do first thing tomorrow morning…”

“I’ll be there in an hour”.*

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Turns out my bronchitis is bacterial.

TO RECAP:

After my last chemo infusion, I got sick (as usual) but it was getting worse each time. A few days later, I started coughing & went to the Dr. I had bronchitis and it was treated with antibiotics.

Antibiotics didn’t work. Went back to the Dr. Got different antibiotics, didn’t work, then got a refill… Still no progress, in fact I was getting worse (c-diff - severe dizziness, lightheadedness, nausea and nonstop vomiting). GI said: “NO MORE ANTIBIOTICS! Then I ended up in the hospital.

The HOSPITAL said my bronchitis was viral, which is why the meds didn’t work.

Made appt to see pulmonologist. Had more tests done.

Today… (Seven and a half weeks later) tests show that I have bacterial bronchitis. Some of my numbers are OFF THE CHART! Things were thrown around like a parasitic infection, some asthma thing that will require ongoing injections, my gallbladder could be a factor as well. If you remember, early last year… (or to those of you whom may be new (Welcome)) while admitted to the hospital for 3 weeks because of my #ulcerativecolitis; I was also diagnosed with gallstones. I said, ok, then just remove it, but they refused saying they wanted to wait until it burst. Go back and read my post; THAT’S ACTUALLY WHAT THEY SAID!!! Not… Let’s wait until some of this inflammation goes down and we’ll schedule surgery in a few weeks. No, no it was, let’s just wait until you come in screaming in pain, then we’ll do it.

(Personally, I believe it was because I didn’t have health insurance… but I digress).

Now my gallbladder may be a contributing factor as to why I’ve been having so much difficulty breathing this year.

I mean, just WTF is going on here!

Check back with this post, I’ll add to it when I have more information in a bit. 😡

STILL JUNE 6, 2019

So…

My heart rate continues to be high, today was 127. Still dizzy, lightheaded and nauseous.

My ferratin levels are considerably low = iron deficiency. Makes sense that I’m anemic with how sick I am and all the blood loss. My pulmonologist is recommending that I have an iron transfusion since I can’t digest iron pills. I’ve had an iron transfusion before… It is Very, VERY unpleasant.

I’m going to be tested for possible Aspergillus.

Oh, don’t know what that is? How about the possibility of mold in my f*cking lungs!!! It can be quite lethal to those with weakened immune systems. Remember (Again… sorry newbies, but you have a lot of catching up to do) when we came back from evacuating during hurricane Florence? There was black mold in our rental home and I slept in the car for a month (with a broken back) and they never ever fixed it! They just did a bleach wash, then cut holes in the ceiling and wall; it’s still like this now! Well, due to the exposure, I may have a lung disease caused by mold in the air. We’ll find out!

(This is TODAY!!!)

BTW… What is that black shit falling from the hole in the ceiling? Dirt, Rot? Mold? All of the above????

‘IF’ it is determined that I do have Aspergillus as a result of black mold… I’m getting this stuff tested and if it checks out… I am suing the pants off the owner of this place who has flat out refused to fix anything despite our complaints!!!

I’m also being tested for intestinal parasites. Requires another stool sample at the hospital of course, where else?!

My pulmonologist as stated earlier is forwarding a request to my other Dr’s that I get my gallbladder removed.

Of course now that my bronchitis is bacterial again (sigh…) it’s back to antibiotics. And just like that I have to worry about C-diff again!!!

Now I’ve saved the best for last.... Every Dr. that I’ve seen over the past 7 weeks in regards to this bronchitis has reluctantly suggested I go on Prednisone to help with the inflammation in my lungs. I refused, over and over and over again. (Had you been keeping up with my ongoing health struggles over the years and these: “Can’t Write, Can’t Type, Can’t See… Oh My, Oh Me” recent updates) you would have read that long term Prednisone use to treat my extreme #IBD has caused “Avascular Necrosis” or incurable rotting bones!

Today, the bronchitis is so severe, the wheezing, the chest pains, not being able to breathe… the pulmonologist also recommended I go back on Prednisone 4 - 6 weeks @60 mg (I refused 60). I might be days away from pneumonia, so I said… ‘ok’ to 40mg. Can’t wait to have even worse knee & joint pain (I already limp like a drunken peg-legged pirate) yay!!! more rotting bones, more side effects… I’ve been off it for 3 months now and there’s been no diminishing of any of the side effects, but I know it’ll take years as it did in the past, while some things (avascular necrosis, degenerative arthritis of the spine) are permanent. All I can say is… it better freaking work! I’m so done with all this incessant coughing already!!!

Lastly, as I mentioned earlier this week (and I quote)

“Btw… Can I just go one month (ONE MONTH!!!) without being stuck with needles???”

Please allow me to change that…

Can I just go one week (ONE WEEK!!!) without being stuck with needles???

Today is brought to you by my “Oye Vey face”.

Last updated June 17, 2019