Can't Write, Can't Type, Can't See... Oh My, Oh Me #2 in General Mental Anesthesia

CONTINUED FROM PREVIOUS ENTRY #1

MARCH 4, 2019

Although I’ve had pain in both knees for nearly 20 years, I’m finally getting an MRI today on my right knee (the worse of the two).

Two decades of limping and pain on the verge of getting fixed? We’ll see what the damage is and face the surgical options next.

Ulcerative Colitis, my back injuries, the blood clots in my lungs are all worse than this and more painful, but I’m excited to have this opportunity. I know that knee surgery isn’t always successful and recovery is difficult, but if that’s what it comes down to, I’d much rather have this done than have my colon/large intestine removed which has a very poor success rate and in many cases life afterwards is just as bad if not worse.

I’ve had a few MRI’s in my life and they’re no big deal, but I do have 2 concerns.

1. Will I be able to lay down on the table with my broken back? Last time they had to knock me out. I have healed a bit since, but I’ve had trouble as recent as last week lying down for a cat scan which is just a few minutes compared to the 45 minutes to an hour that an MRI takes.

2. You guessed it… Ulcerative Colitis. It’s only 11:30am and I’ve already been sick 8 times. :(

These two things aside… putting on some scrubs now, bring on the MRI!!!

MARCH 11, 2019

Well, here it is…

I went into the Orthopedic Surgeon’s office today to go over my MRI results from last week. (I have the exact same pain in both knees, some location, but my right one is worse, so that’s the
knee they looked at).

I’ve walked with a bit of a limp (especially after long days on set filming) for 15 - 20 years now. Over time of course it’s gotten worse, but as brains do… my brain altered the way I walk, to negate some of the pain. This of course caused long term back injuries.

Getting back to the point; we both expected to be discussing surgical options for a likely torn meniscus.

Something that didn’t even phase me what with everything else going on.

The diagnosis: Worse.

“Avascular Necrosis” in layman’s terms: Rotting knee bones.

Bone is alive and dynamic; it needs to be bathed by blood. Blood vessels enter the humerus in various locations, and branch out inside the humeral head towards the periphery. In avascular necrosis, the blood supply to a segment of the humeral head is lost, and that segment dies… basically disintegrates and collapses.

It is incurable.

Treatment? I have to see yet another specialist that will talk to me about (if Medicaid covers it) total knee replacement surgery.

The cause…? G-Ddamned F*ing Prednisone!!! Yes, you heard that right. I never wanted to be on it, Dr’s didn’t want me on it, but my ulcerative colitis is so extremely severe, not being on it means I’m hospitalized, and what do they do in the hospital? Put you on even more Prednisone at higher doses. It’s a doubled-edged sword, a catch 22. Without it, I live in the hospital (on it) or I just die. (The latter being far more appealing).

The only way I can get off of this drug is to see Dr. Mackey (the holistic Dr. that saved my life in 1998) the only living person that literally got me off of Prednisone (and other dangerous meds) and healed me like no one else can. For years you’ve heard me talk about it, perhaps now you understand.

How Dr’s treat my disease, causes other diseases. I’m so depressed over everything I often can’t put it into words. Most of this damage was done in the 1990’s. 1992 - 1998 - GI’s had me on very high doses of Prednisone for 6 years!!!! from 40 mg to 80 or 100/day. The last three years and now chemo… has just made things worse.

I’m even contemplating stopping the chemotherapy. It’s not working. I want to give it more time, but it’s really killing me. I can deal with being incapacitated for a few days after an infusion. I can deal with the severe itchiness and increased back pain, but one thing that has me against the ropes… absolutely excruciating bone/joint pain in my hands!!! Early morning to early afternoon the last 2 months, I can’t use my fingers. They won’t bend without me almost crying in pain trying to get them to move. The other day I couldn’t even hold a pencil. A couple of days, that hand pain was throughout my entire body!

Not having the use of my hands… I’ve tried so hard to suck up the pain, to deal with it, to walk it off so to speak, (and this is while on painkillers) but I just don’t know if I can continue.

I’m making one last desperate attempt to share the gofundme page with you all in the hopes that you’ll share it with others (on and off of PB). Facebook, Twitter, blogs, at work, school, church etc… More eyes (different eyes) need to see it.

Also, does anyone know an internet marketer? For ex. Someone on Fiverr.com that you can pay to have them blast out your website, business, gofundme campaign etc…? That might be the help I need. Anyone willing to volunteer??? I’m considering that option as my social network is rather small these days, and that just won’t cut it.

Guess you could say I’m having a case of the Mondays.

Thank you to everyone that has helped me along the way. Through friendship, financially, through shares of the gfm page, through calls and messages… none of it is lost on me. I cherish you all. Honestly. Truly.

TRYING TO SURVIVE- This is my GoFundMe Page.

APRIL 12, 2019

Hi all,

I’m sorry, I know it’s been a while. I’ve really not been feeling well (above and beyond everything that’s going on).

The chemo is just destroying me!

I can’t use my hands most of the day. At night I’m either crying or screaming out in pain (and this is while on pain killers). Not just my fingers, my whole body; my hands, knees and back are the worst.

A side effect of the chemo is severe joint pain and G-ddamnit I’m feeling it. My fingers literally won’t bend! Sometimes I can’t hold a pencil, let alone my cell phone. In fact, it’s taken me over a week just to write this post. I can’t use my hands to turn over in bed, I can’t sit on the toilet (I have to fall on it) and half the time I can’t get up. Last week, I couldn’t get out of my mom’s car; she didn’t have her phone nearby and I was stuck for a half hour!

I can move my fingers a little right now which is why I’m trying to get this done.

When I found out that Prednisone (prescribed to me over the years for my chronic ulcerative colitis) has caused (AVN) Avascular Necrosis, I stopped it cold turkey, which of course is dangerous and I’m still feeling the effects of withdrawal. I type a word or two and then I have to rest my arm for a few minutes. Not to mention, without Prednisone, I’m bleeding more (1/4 cup / day blood loss) as well as increased pain and going to the bathroom anywhere from 10 - 20x/day.

Speaking of AVN, I had a surgical visit to discuss my options. I was under the impression that I would need a total knee replacement, however… I’m not that lucky.

If I had AVN in one area of my knee, that would be the correct course of action, but my MRI shows that I have AVN in 3 areas in my right knee, so a total knee replacement wouldn’t work. Instead it was recommended that I do IntraOsseous Bioplasty. Long story short, they drill a hole and extract bone marrow from elsewhere in my body, then they drill 3 holes in my knee and inject the marrow (stem cells) into the rotted areas in the hopes that new bone will grow. The only guarantee is that it’s painful, but it may be my best option. (See Video).

I spent my birthday in the hospital getting tests done and I’m in the hospital now. I’ve been having a very difficult time breathing and when I was administered a test last week, hooked up to wires etc… apparently I failed it which brings me to today and a battery of more tests which thus far have been extremely unpleasant to put it mildly. One test included locking me a clear box while I breathe into a machine using certain patterns.

Not as easy as it sounds and I hope I never have to do it again. Dr’s are looking into various lung diseases such as copd. I’ve never smoked a day in my life!!! I won’t know until next week sometime.

Needless to say, my depression has been hell as of late. A depressed person suffers with depression every single day; but will have depressive ‘episodes’ which are extreme. That’s when suicides and cutting happens, not that I’m at that point. Generally my episodes will last a few days, maybe a week, but this one has been over a month. I feel like I’m drowning emotionally; I just can’t get out of the gutter. (Another reason I haven’t been around). I just can’t shake it. Every bit of joy that I’ve ever been able to squeeze out of life has been stripped from me. I’m nothing but a broken, diseased pile of shit.

Anyhow, I just wanted to update you all and say thank you to all of you whom have reached out to see if I was ok. I know I haven’t responded to most of you, please just know that it’s been tough. I am barely mobile and constantly sick. It’s tough to talk, tough to type, tough to think and things aren’t going to improve anytime soon. I have a tooth abscess and on antibiotics which likely means I can’t get my next chemo treatment which is supposed to be on Monday. I may also have to cancel my next Orthopedic surgeon consultation on Wed, as he was hoping to see me shortly after my infusion because he wants to see just how incapacitated it makes me. Idk… maybe it might have a bearing on the surgery.

I hope everyone is doing well, I know that isn’t always the case, but it is my wish for all of you.

Thank you again for reaching out and keeping in touch.
G-D bless!