CONTINUED FROM PREVIOUS ENTRIES #1, #2 & #3

APRIL 22, 2019

Pics / Vids / it’s all here!

So, I just had my first real incident w/Xarelto. (The blood thinner for the pulmonary embolisms).

I’ve been having nosebleeds since my last chemo infusion (7 days ago). Additionally, the 3 days of flu-like symptoms that I always get have gotten worse, MUCH worse!

I’ve been sick all week, so I went to the Dr. Today. I have the flu and the early stages of bronchitis. Had I waited until my scheduled visit (on the 29th) I would have had pneumonia. That’s the good news, I caught it in time.

The bad news, it’s been impossible to completely stop my nose from bleeding and I just sneezed.

The real gore was on my shirt & bed sheet (literally COVERED in blood) it looks like I was stabbed in the chest; currently being washed.

Now I’m standing over the bathroom sink as it drips everywhere trying to get it to stop.

Tilting my head back, pinching… It has been DAYS of this..

Xarelto has no coagulant.

Ugh…

Help me.

sick #Health #healthcare #horror

APRIL 24, 2019

Like books? Here’s one.

Update to my last post and some nostalgia.

That intense burning heel pain I described, happened several more times, once more with both heels and many with just my right. It’s so bad, it wakes me up after I finally go to sleep. It’s starting to become not just a daily thing, but during the day and at night!

I’ve also had some severe pain shooting down my right leg, across my knee and down to my foot. I KNOW what causes that! Went to the Dr. and as it turns out, some of my herniated / bulging discs are currently pinching nerves and that is also what’s causing that searing heel pain.

I almost wish I was going in for back surgery next month instead of knee surgery as it affects so many areas of my body and just cripples me completely. My pre-op is Apr, 29th though I still haven’t got the ok from my others Dr’s yet to see if they think my body can handle the surgery. 😕

Today is the first day in the past 9 where the nosebleeds have finally stopped! Thank G-D! Monday night I had a nosebleed for 7 hours straight. As soon as I’d remove one tissue, blood would just come streaming out like a runny nose. Xarelto will be the death of me. I hate that I need to be on it indefinitely because of my blood clot problem. It’s ridiculous that I’ve lost more blood this past week from my nose, than colitis!

My mind is just in a dizzying haze of confusion and not just because of all the meds. I’m just so messed up from everything.

You know what almost hurts the most?

My heart.

I’m heartbroken.

I’m beyond depressed. I’m so sad, I don’t even know how to describe it.

I’m sad because I feel like I died, yet I’m still alive and trapped; forced to exist in a flesh and bone prison that is literally rotting and broken. Like a walking eggshell under constant pressure; constricting me in every conceivable way.

I used to write. Now most of the day, not only can I not think straight or create, physically I can’t bend my fingers. (See previous post). My mom told me yesterday that I wake her up in the middle of the night with my screaming out in pain. I don’t know how to share it with you. Overnight and throughout the day my fingers are stiffened like rigamortis. Suddenly a finger or two will twitch and if I told you the pain is like bending your finger back until it breaks… that would be enjoyable compared to what this feels like!

I used to be a Filmmaker and a Director. My love and passion. I see and read about my friends working on this production or making this movie… I’m so happy and excited for them and it utterly destroys me that I can’t be a part of it. I feel like I was once needed and relied upon and I’ve let everyone down. If I wasn’t the one landing a gig, then I’d be getting calls all the time. “Hey Jay, are you available for this or that? Hey man, can you shoot this event or I need a 1st AD, are you available?” I’m all but forgotten… Yesterday’s news, yesterday’s trash.

I used to be a photographer. I can’t hold my camera let alone shoot for a client. With my back injuries and nerves spasming and me crying all the time… it’s just not very professional.

I used to have hobbies and things I enjoyed. Other than my work, I hiked mountains and chased storms, I played & listened to music, spent time with my pugs and enjoyed sports. It’s all just a memory now and a faded one at that. What’s worse is that if any of you truly know me, you know that no matter what I’m doing or what time of day or night it is, even if I’m sick or hurt; if there’s a severe storm outside or even nearby, I drop everything to go chase it. Camera in hand… always at the ready. But I feel so horrible now, I just lay down through the storms. I can’t even enjoy what I enjoy most.

I’m not alive. I died in November, 2015 when my ulcerative colitis came out of hiding. All this time later and I’ve lost my home, my car, my belongings, my friends, my job and any pleasure I ever managed to squeeze out of this miserable life.

The loneliness is truly indescribable.

I do want to thank two particular individuals. My friend Kevin McCarthy We’ve known and worked tirelessly on environmental projects with one another since 2004. Always trying to make the world a better and safer place. He’s one of the very few people in my life that has thrown me a life line, not just once, but over and over again. He’s relentless in his pursuit to help me get well and it makes me feel as though I can’t quit because he hasn’t. Sometimes you can’t see the silver lining, but through the actions of certain individuals, you know it’s there. Thank you.

Also, my best friend Ken Rubin (aka: Alice). We’ve known each other since 1987 & have been best friends since 1988. I had to move away from home after highschool (it was a matter of life or death) and he’s always gone out of his way to stay in touch. Whether it’s a phone call, voice message just to say ‘hi’, a letter, an email, a text… He makes sure that I know he’s by my side no matter how far away I am. I nearly died 3x last year, the first of which was during a 3 week hospital stay. Without notice or thought, he drove over 1,000 miles just to take me home from the hospital & then had to leave the next day. Life wouldn’t be worth living without you my friend, you truly define the word.

.

My entire life now is in nostalgia.

I came across this video of a friend & I playing racquetball. We played at my apartment complex from midnight to about 2am. These are clips I had strewn together years ago. I even titled it with our old Opendiary names. Damn I miss those days. Best time of my life!

No regrets. Even as I face the first of many surgeries, if I could, I’d play racquetball tomorrow the exact same way; sliding, losing skin on the floor, slamming into walls, sacrificing my body for the point… just letting my competitive nature take over.

If you notice, I always had random body parts wrapped in ace bandages depending on what was hurting me that day. Though I think this particular collage was just over 2 days and we played 200 times, ah well.

(sigh…) I really, really miss it.

Good times.

APRIL 30, 2019

Next to Sprint, I’ve never dealt with more incompetent people than the surgery center for my pre-op.

Last week I get a phone call from there, they said: “We have you scheduled for 8am on the 29th” Our address is 603.... I said, “That won’t work for me, I can’t do early appts,
Additionally, I have a primary care appt that day at 2pm. Can you try to do late morning”? She said: “I’ll see what I can do and hung up”.

Two days later I get a call from my primary cares office. “Ok, we have you scheduled for your pre op appt at 2pm on the 29th”. “No you don’t” I replied. “You have me scheduled for a primary care appt at 2pm”. She said: “No, they changed that appt to your pre-op”. I’m like. “Who’s they? No one has permission to just cancel my primary appt! I don’t care what you have in front of you or who did what, I know my primary wants to see me that day, that appt has been scheduled for over a month and that appt is more important than any other”.

So she changed it back to my primary care at 2pm and then said that we still need to schedule my pre-op and I said: “Late morning if we can”. She said, there’s a 10am 11am, 11:30…”
I said: There’s an 11:30? Why wasn’t that scheduled initially, that’s perfect!” So, 11:30am on the 29th and it’s at the same building as my primary care, awesome!!!

The following day, I get a call from the surgery center. “Hi, I’m just confirming your 12:30pm appt for pre-op…” I actually said to her: “Who over there doesn’t know how to use a calendar”.
Her response to me: “A great many”. (and she laughs). I said: “You guys have 1 job. You need to be able to count to 31 and tell time, ok so 60. Why is no one there capable of these rudimentary tasks?” Then she shut up. I told her that I was sick and tired of making appointments, writing them down, putting them in my phone only for them to magically change them on me. I said I’ll do the 12:30, it’s at “xyz” address (my primary care) yes? She says: “No, it’s at this address 603.... etc…” Whatever, and I hung up.

Yesterday, my navigation can’t find 603…address. Now, I’m limping severely with bad knee pain, after all, this is for knee surgery and I get out of my car and walk a good half mile up and down this road looking for this address. I finally find a place called: Surgery center. No number on the door. I go in and they confirm that I’m at the right place. I ask for the address, she ignores me… I ask for a business card, they don’t have any. Frustrated, I sit down.

I get called back and they have me watch a video on how to wash my hands…

Then the pre-op.

I was told that the purpose of the pre-op was to have all my questions answered. I had a lot.

She couldn’t answer a single question! NOT ONE!!!!!!!

She didn’t even have a copy of my records from my orthopedic surgeon, I mean wtf???

She didn’t have any info on if my GI even called to approve my surgery…

I ended up walking out of there having learned nothing other than I can’t have surgery right now because I have too many questions that no one has answers to.

Actually, I did learn 2 things.

1. The surgery is 5 hours long.

2. I would not be able to recover at home. I’d have to spend time in a care facility so that I could be tended by nurses 24 hours/day etc…

I spoke with my orthopedic surgeons office a few minutes ago. My GI said he was incapable of approving me and that they’d have to go through other Dr’s.

No one wants any responsibility, no one gives a shit!!!

It was eventually determined that my #ulcerativecolitis is too severe for surgery on my knee. Blood thinners is another issue. I’d have to stop taking the blood thinners a week before surgery, but I can’t even go a day without taking them or a new clot could form and if a new clot were to form in a bad area, it would be lethal. My blood clots were in my lower lungs, had they’d been upper lung, I would have died last year. And when I say lethal, if a clot were to form in a dangerous area, I may have minutes to live

Additionally, I’m not on any Prednisone, and the chemo isn’t working at all; so the only thing keeping me alive (and barely at that) are the few herbs I’m taking. (Slippery Elm, Marshmallow Root, Myrhh Gum, Licorice Root, Boswellia). I would also have to stop taking them a week prior to surgery. If I did that, I’d be hospitalized before then because of the uc & bleeding. As it as, I’m down 27lbs in the last 6 weeks.

So… no surgery.

But it still has to happen at some point because it’s not a matter of ‘if’; it’s a matter of when the Avascular Necrosis gets to the point where I’m wheelchair bound for the rest of my life. It will only keep rotting and eating away at my bones.

But… I have to be in remission to have this knee surgery. The risk of infection is too great having to get up and go to the bathroom so often, plus a lot of strenuous movement / motion could reopen the wound, also risking/causing infection.

Just one more reason why this is sooooo important:

PLEASE HELP ME HERE (Please share… Please help me market it, help this go viral). Pretty please???

Twitter, blogs, Facebook,church’s, at work etc… Somewhere there’s help for me. Somewhere out there. Thank you.

P.S. If you risked boredom & repetitiveness by reading up to now, you’re in for a treat! A reward if you will. I had a visitor recently.... (my beautiful niece Talya) in from California and she showed me a game that was quite apropos if I do say so myself. See vid.