Can't Write, Can't Type, Can't See... Oh My, Oh Me #9 in General Mental Anesthesia

NINE. That’s the magic number to get everyone caught up to current day and it doesn’t contain many high notes; though it does include a plethora of well executed exclamation points.

JUNE 17, 2019

At Gallbladder surgery Pre-op…

I am NOT liking what I’m hearing. G-D almighty get me to South Florida so I can be seen by someone with a brain in her head and that actually CARES about me!!!

TO GET ME TO A DR. THAT CARES ABOUT ME AND CAN SAVE MY LIFE!

I’m not trying to be melodramatic, this isn’t a sad story; it’s not fiction… it’s my life! Literally, my life is at stake here.

Didn’t get to take anything for my back, my knees, Uc everything hurts.

Blood pressure is 169/94 🤕

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JUNE 18, 2019 (PART 1)

That’s A LOT of mini stabs! Between my back and arms somewhere between 50 - 75.

3+ decades and allergy testing and NOTHING has changed.

I mean… seriously....

I’m dancing around the room right now because things are reacting on my back… Arghgh… ITCHY ITCHY, STINGY STINGY!!!

ARGHGHGH!

Now my arms…

Then asthma testing…

(CONT JUNE 18, 2019 / PART 2)

OK. So, I need to update from yesterday and today. No one needs to read my posts, I just have to keep writing everything down so that I can remember. Between my health and medications, I have no short term memory, so if I don’t make these posts, I won’t be able to recall all the stupid & idiotic things that Dr’s say to me etc… but for those who do read and comment, I thank you and I appreciate you. Everyone is welcome. I WILL get to all comments, I promise!!!

CAPS, inappropriate punctuation, it’s all here!

Alrighty then.

Oh and if swearing upsets you, you might as well turn around and leave now, because I’m upset and I’m not going to apologize for my colorful language brought on by the unending incompetence that surrounds me!!! Let the unapologetic purging commence!!!

So, In a post not so long ago (a week or 2) I mentioned that I was now seeing a pulmonologist, She had mentioned that my gallstones / gallbladder may be affecting my breathing; and I quote:

“If you remember, early last year… while admitted to the hospital for 3 weeks because of my ulcerative colitis, 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 from last year; 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.

Assholes! (The truth is, I didn’t have insurance, and say what you will, but THAT was the reason why!)

So she was shocked when I told her that because they should have taken it out right there and then. Now she is advocating that I have gallbladder surgery.

Additionally in that same post (I just looked it up, it’s from June 6th) I said:

“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 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!!!

(If I were in a position to rent out a home, I could NEVER be ok with tenants living like this!!!)

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

Now onto yesterday and today.

EVERYONE… RIGHT NOW, YOU SHOULD PREPARE YOURSELVES; STRETCH YOUR FINGERS AND ARMS, CRACK YOUR KNUCKLES AND NECKS FOR A BIG COMMUNITY SLAP ON THE FOREHEAD SMH!!!!!!!!!!!!!!!!!!!

In fact: this should be positively delightful if you’re a fan of sarcasm.

I went to see a gallbladder surgeon yesterday. (With me so far? I ask because it’s important). I had a pre-op appointment.

When he comes into the room, the very first thing he says is:

(In a serious tone) “So what brings you in today?”

DO I HAVE TO DO EVERYONE’S FUCKING JOB FOR THEM???

“Why do you think I’m here dumbass?

I just walked in from the street and I thought maybe you wanted to play some Jenga.”

I mean WTF???

So immediately I know this is a waste of time! I essentially repeat the above.

I’m going to go into more detail, but in the 10 - 15 minutes that he was in the room, he spoke about my gallbladder for less than a minute! All the rest of the time was spent trying to convince me to have surgery. (ARE YOU STILL FOLLOWING ALONG? Because you won’t be in a second).

ULCERATIVE COLITIS SURGERY!!!!!!!!!!!!!!!!!!!!!!

This guy is in collusion with my GI Dr’s. I tell him about pains that I have directly where my gallbladder and pancreas are and says: yeah, that’s your ulcerative colitis.

Now I know that my UC DOES reach that far, I have ulcerations that far up and you all know the severity of my colitis if you’ve been following me or visited my GoFundMe page, but he’s blatantly ignoring all the concerns that my pulmonologist is expressing. He tells me that my UC is the sole cause of my breathing troubles, not my gallbladder issues and refused to schedule surgery. He also went so far as to say that my GI agreed.

Again, WTF?????

In the year and a half that these Gastroenterologists have been treating me, they haven’t so much as whispered one single fucking syllable about an inability to breathe with IBD in ANY FORM!!! According to documented research 3 out of 1400 IBD patients experience respiratory disease (caused by IBD) and most of those are Crohn’s patients. Also in reference to reactive airway disease and IBD (Patient Care Online) states: “The paucity of literature on this topic is rather astonishing, considering that IBD is a common ailment”.

Is it possible? Yes, especially with my unique severity, but to flat out tell me that my gallstones and my gallbladder as well as former pancreatitis and sharp stabbing pains in that area are of no concern, particularly when my pulmonologist is concerned is fucking concerning!!!

Then he goes on to say… (and this gets good…)

“It’s possible that you have something called (CROHNS/COLITIS).

(Sigh…) Let’s go back again to last year. My GI’s thought that I might (after 26 years & 25 or so colonoscopies) of diagnosed UC suddenly entertain the idea that I may in fact have Crohn’s disease; even going so far as to say that I have BOTH (which is impossible) you either have one or the other.

In regards to surgery (WHICH I WILL NOT DO BECAUSE I AM NOT STUPID) A (J-pouch is the only option) Actually, I need to stop myself here. People who have had surgery, are not stupid. They were pressured, coerced and convinced to have it by ignorant & uneducated gastroenterologists who don’t know or (more likely) won’t admit that there are better options; causing all their patients to suffer needlessly. Possessing the education that I now have, not pursuing it and having surgery… THAT is stupid. A J-pouch is the complete removal of my large intestine. The small intestine is then sewn to the anus and cut open to form a pouch (a new rectum) but it’s so much smaller than the one we are born with that “IF” the surgery is a total success (which is not likely) you still have to go to the bathroom 6 - 8x a day because it can not hold very much. GI’s consider this a ‘cure’ - then again, they do not know the definition of the word.

Going back to “Crohns/Colitis”. It’s a strange term that really just means you have Crohn’s disease (only in the large intestine) and this “gallbladder surgeon” keeps telling me that if I have the J Pouch surgery, I’ll be cured!!!!” (I’m not going to get into the word ‘cure’ and it’s blatant misuse here, so moving on…) He also told me that the J Pouch surgery cures ULCERATIVE COLITIS, NOT CROHN’S DISEASE because (and I’ve written about this many times) but the biggest difference between the two is that Crohn’s can happen anywhere in the digestive tract whereas UC only occurs in the large intestine.

ARE YOU GUYS FOLLOWING ALONG??? BECAUSE I’M NOT!!!!!!

“If” I have (Crohns/Colitis) THEN I HAVE FUCKING CROHN’S DISEASE!!!!!

If I have this surgery, and I DON’T have UC, I’M SCREWED!!!

Once you start removing organs, you can’t go back.

Once a hamburger is burnt on the grill, you can’t uncook it!

So now, I’m getting a 2nd opinion on the gallbladder thing.

There’s more, but I’m done talking about it… I just can’t.

OK, yes I can.

I HAVE to. Do you know why? BECAUSE IT GETS EVEN WORSE!!!!!!

Try and figure this shit out!

So this schmohawk asks me: “Have you even talked with a surgeon about a J-Pouch surgery?”

I said: “Yes. At the behest of my GI Dr’s during one of my hospitalizations last year. I agreed to speak with the EXACT surgeon who would have performed the surgery on me (if I were to have gone ahead with it). I even liked the guy, he was professional and courteous and we had a pleasant conversation”.

Schmohawk replies: “No, not that kind of surgeon; you need to go to a surgical center”.

“Listen fucktard, a colorectal surgeon IS the only surgeon to talk to about this, and HE would be the one doing it!”

Believe it or not, this back ‘n forth bullshit went on for a few minutes before I finally said:

“WHY AM I HERE? Because according to YOUR logic, I need to see a different surgeon about gallbladder surgery since you’re just the gallbladder surgeon that would PERFORM the surgery whose (based on what you’re telling me) clearly not qualified”.

The appointment essentially ended after that.

(Sigh…) Every - fucking - day. Why? Just Why???

I really don’t need the stress, I’m tellin’ you.

I’m going to go to the bank though and see (despite having a credit rating lower than the core of the earth) if I can get a loan. I can’t keep doing this. Help exists, I’ve experienced it, I’m only alive today because of it, and on my dying breath, I will see my holistic Dr. Dr. Mackey in South Florida and get well. Otherwise, there’s just no point in going on.

and don’t you dare come to my page and talk to me about suicide, I will delete and block you so fast it’ll make your G-Ddamned head spin! No one and I mean NO ONE!!!!!!!!!!!! knows more on the subject than I do!! This is my space to express myself as I see fit!

and that’s all I have to say about that.

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TODAY (Part 2 from earlier)

I saw an allergist and asthma Dr.

Not as much as drama.

My lungs are at about 75% capacity; meaning that when I take a breath, I only get about 75% of one.

This is not a new diagnosis, I’ve known this for about 15 years now, but I have some permanent lung damage to my lower lungs caused by second hand smoke when I was a child with developing lungs. (I’ve never smoked a day in my life!!!) My dad however chain smoked everyday around me since I was born until my parents divorced when I was 8 or 9. This has led to my asthma and chronic bronchial infections.

More Advair 500, Claritin D recommended in the interim (too rich $$$ for my blood though (what little I have I have left)). Trying to get Spiriva Inhaler as well, but of course Medicaid isn’t covering it.

So then I was itchy and stingy and got stuck with a crazy amount of needles. Apparently, I’m allergic to planet earth now. Like 12 different trees and a few other things. I’m allergic to (3 DIFFERENT KINDS OF DUST! Yeah, that’s a thing). I’ll have to go back for more testing, but regular allergy shots (like I had for 3 years when I was a kid) is the current recommendation.

If NASA is still looking for someone to start colonizing Mars, I’m your guy. To hell with this place, I’m outta here!

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JUNE 19, 2019

Primary care appt this morning, then iron transfusion. Good times.

Honestly (as miserable as they are) I’m looking forward to it. I’m so extremely dizzy, nauseous, lightheaded, I’m falling over all the time, I can’t see straight, (every couple of seconds I have to look away from my phone or computer). I’m insanely fatigued, but it’s mostly because my hemoglobin is barely at a 6 (or just below). In layman terms, I’ve lost so much blood lately (2019) I have two and half times less blood currently in my body than the average person. So, I’m looking forward to a little energy because I just can’t function at all.

I’ve been working on this post for almost 2 days!!! I’m tired, wicked dizzy and sick to my stomach, so I’m going to go lay down.

CONTINUED

IRON TRANSFUSION

Not a moment too soon; I didn’t want a wheelchair, so I almost fell walking into the infusion room because my iron levels are so low. Nurse caught me, all is well.

Recommendation: Do NOT let anyone stick a needle in this location!!! $&#!@$!*#!!!

Had 2 #ulcerativecolitis attacks during the transfusion, that was exciting!… 😕 It should be an Olympic event - trying to make it to a bathroom in 5 seconds while hooked up to an IV, plugged into a wall behind you. Dangling cords, dizziness, nausea, rotting bones in your knees, excruciating contraction pains in the gut…

Yeah, I’m on the toilet here! So what!

NOTICE THAT THERE ISN’T A HUGE POOL OF BLOOD ON THE FLOOR???

Kind of funny though, in that, my Pulmonologist, Primary care Dr, and the nurses at the infusion center all said the exact same thing when they looked at my hemoglobin (6) and ferratin levels: If you know anything about ferratin (I’m at a 6.9) that alone should explain to you how I feel and have been feeling the last few months and why I’ve been absent all this time).

“How are you even able to get out of bed? You shouldn’t be able to function at even the most basic level”.

Idk… It’s not easy, I just force myself to. I mean, the last few months I’ve been falling a lot and can’t see straight or concentrate etc… but I just try not to give in to my failing body. It wants to rest, to do nothing and I force it to move around, that’s all. 😒

I don’t feel it though; the iron. I have absolutely no energy. It will probably take a few transfusions. I feel like they filled up a lawnmower, but I’m driving around in a Hummer. I need A LOT more liquid steak!

All in all, no big deal, not like they used to be, so i guess that’s a positive.

Regarding my primary care appt today; she VEHEMENTLY DISAGREES with my GI’s & the gallbladder surgeon I saw this week and has a staunch position AGAINST #IBD SURGERY!

I like her. By far and away the best Dr. I see. She reminds me a lot of my holistic Dr. back in Florida that I’m desperately trying to get to. She’s not just forthright, but she’s kind and caring. She looks at me with empathy, not pity and doesn’t speak down to me as most Dr’s do. She is incredibly intelligent, open minded and tells me that she needs to research something if she doesn’t have an answer right away.

She doesn’t shove meds down my throat and take a lot of time making sure that when she does need to prescribe something that it is safe for me to take.

Speaking of meds, she wants me to try something called: Ursodial 300mg capsules which ‘may’ dissolve certain types of gallstones. Relatively safe, if it works, GREAT! If not, back to square one.

I wish we could be friends, but if we did that, I’d have to get a new Dr. and no friendship is worth that. I need her in my life, but unfortunately just as my primary care.

I’m very thankful though that I finally have someone I can rely on. It’s emotional to be honest because I’ve never had that. I’m so accustomed to being treated like garbage by Dr’s. Like a number, like cattle. She treats me like a human being; it’s a new experience for me.

It’s nice.

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ADDENDUM:

July 21, 2019.

I know I owe you guys an entry or 10. I’m working on it. (Been a rough few weeks).

Last updated July 22, 2019