Can't Write, Can't Type, Can't See... Oh My, Oh Me #5 in General Mental Anesthesia

CONTINUED FROM PREVIOUS ENTRIES #1, #2, #3 & #4

MAY 6, 2019

(Another emotional one, you may need to grab the tissues…)

I just had an epiphany of sorts.

Last week, I had x-rays done on my heels, but the pain turned out to be injuries to my back pinching nerves. That aside, I was given surprising news…

Many years ago, I worked on a live interaction / theatrical production that involved patrons that paid to act out scenarios / story lines using airsoft weapons and the like. It was a lot of fun.

One day, 6 groups had paid. That’s 6 individual games all approximately an hour long. On this particular day, they were short an actor, a main character. Now I worked there, but as the Stage Manager, not as an actor; I did however know all of the scenes and dialogue. So I volunteered to play that role as there was no one else.

The first five runs were flawless. Basically, it was a zombie scenario & the character that I had to play that day was the scientist that could stop it. The goal was for the patrons to sneak in and rescue me.

This shot however was just me goofing off between shows.

On the 6th run, the group found me, but they panicked when the horde descended upon them. I got killed. So I’m laying on the ground in this basement. Another actor (a zombie, and a very big guy) got pushed by a scared patron and fell with all his weight on my foot.

This picture is near where I was killed.

I immediately knew I was hurt, but as an actor, I couldn’t move, besides… he was laying on my legs.

When the room cleared a minute or two later, I shouted for him to get off and grabbed my ankle, then called for help. I really couldn’t walk on it and thought it was a bad sprain. I was helped to my car and somehow (very cautiously) drove home.

The next day, I was scheduled to work (volunteer) with the EWA (Everglades Wildlife Alliance) a non profit organization that I often worked with shooting footage out in the glades.

The whole day I was limping around carrying a 40lb backpack full of gear/batteries etc… carrying a tripod, cameras etc…

My foot/ankle was killing me! I did have it wrapped in an ace bandage I had on hand and made it throughout the day.

The next week, icing, elevating and trying to keep off it, it wasn’t getting better, but without health insurance, I couldn’t afford to go to a Dr. and I didn’t want a huge ER bill, so I just continued limping until the pain slowed / stopped.

Going back to the beginning, I get the results of the x-rays. I was told that I had an old break in my ankle. Broken in two places where the foot connects to the ankle. I had no idea I had ever broken it!

Thinking back, this had to be when it happened.

The purpose of the story is… even if you can’t afford it, go to the emergency room for any injury you think may be serious. The breaks in my ankle may not have healed correctly, causing me to walk differently which may have induced stress on my back which inevitably led to permanent damage and my death in March, 2014 when I had bulging discs pinching nerves.

To this day, I have a plethora of back injuries that have eaten away at my life. My broken ankle may have nothing to do with it, but on the other hand… you never know.

So please… If all I can do now is give advice; my advice to all of you… is to take care of yourself.

MAY 15, 2019

Well, shit just got real.

I may have made a mistake this week.

I had an appointment with pain management and I’ve not been happy with the way they’ve been treating my pain.

The med just wasn’t effective, and it was less & less effective each time. Words cannot describe my daily pain; to say it’s excruciating is laughable!

So, I made the decision not to take ‘ANY‘ meds at all. No pain killers, no muscle relaxers, nothing… so they could see just how I’m really feeling everyday.

I was in so much agony, I cried.

Which led to going from Oxycodone with acetaminophen & an additional 500mg Tylenol aka: (Percocet) to Fentanyl. My idea worked; I’ve got a better med, but, I broke down in tears 2 more times that day. The pain has just completely broken me.

Specifically, I was given Introductory Fentanyl patches which are slow release, that I replace every three days.

We’ll see if it helps because I’m stopping the chemotherapy if it doesn’t. I don’t care what happens to me if I do. I can NOT tolerate the pain it causes. The joint pain (in every joint). Remember a couple of posts back (Can’t Write, Can’t Type, Can’t See… Oh My, Oh Me #3) I posted a video where I couldn’t bend my fingers? Imagine that in your ankles, knees, elbows, shoulders etc… I am barely mobile and when I do move, I’m screaming in pain! Life is HELL!!!

Honestly, I’m expecting higher doses in my future unless I get to be treated by Dr. Mackey (my holistic Dr.) in which case I get to get off ALL my meds!!! (at least for ulcerative colitis anyhow).

PLEASE HELP ME HERE

Since my last chemo infusion I’ve had the flu/bronchitis. Been over a month now! Constant coughing / hacking / wheezing… 2 different antibiotics haven’t worked, cough meds haven’t worked, Advair hasn’t. They actually just increased the Advair from 100 to 500.

Bronchial spasms are so bad that my resting heart rate has consistently been in the 130’s. Today - 137.

More antibiotics… means I’m on high c-diff alert. I really need to double up on my probiotics (if you take them, then you know that good ones are expensive).

I did just find this though (see pics) tastes great, didn’t upset my stomach and reasonably priced. I hate Walmart, but I got it there for under $2.00. I’d drink it more often if I could. I’d love to buy cases of it! I’d drink a few a day!

Ugh, soooooooooooooooooooo

Sick and tired of being sick and tired.

MAY 19, 2019

I apologize for posting this.

I am truly sorry for posting it here, there’s some content that I do not wish to share, especially with those I’m closest to. Been just staring at the screen for a bit hovering over the Enter key with tears in my eyes, but today is #worldibdday and so…

What a hellacious few weeks!

I’m still suffering with some flu symptoms and horrible bronchitis 5 weeks after my last chemo infusion. Dr’s have had me on multiple antibiotics and as a whole my ulcerative colitis is still so severe, the pain is just unmanageable.

Food is going through me so quickly, sometimes there’s no stool when I go to the bathroom, food just looks exactly the same as when I ate it. Most times I take one bite or sip of something and immediately I’m sick. Other times, I eat and ten minutes later I’m sick and what I just ate went through my system that quick! It’s quite remarkable actually, but my system can’t be taking in / absorbing any nutrients. And I’m absolutely terrified about getting c-diff again if I don’t already have it. Be a fitting way for me to die I guess, but not the way I want to go out.

Imagine going to the bathroom 20x/day. Now imagine that every time you go, it’s the most painful experience of your life. Now imagine that every minute of every day outside of the bathroom is just as painful.

Moving on, I’m just coughing and coughing, bronchial spasm after spasm. That alone is hurting my gut, my back… speaking of which… man… idk. Things are confusing.

Last week (as you may have read in my previous posts or just above this one). I went to pain mngmt. I made a decision as I was unhappy w/my care there. I needed a med that might actually help w/all this pain. Back pain, colitis, joint pain. I am hardly mobile at all! So I decided to take NOTHING no pain meds, no back meds or colitis anything; I had to let them see how I am in real life.

The pain was so severe that I broke down in tears (multiple times) just unbearable! They put me on a Fentanyl Transdermal patch because I’ve tolerated Fentanyl well in the hospital. Starting dose of 12mcg/hour. Each dose is 3 days.

Issues:

1. They are so small, it’s impossible to get on without crimping it / ruining it. I’ve wasted 2 so far because I can’t get them on.

2. When I got it on, I felt no pain relief (ZERO). All night, suffering, crying, moaning. The next day I called pain mngmt: “How long does it take before this is supposed to work?” Six hours they replied, it had been 18.

3. After 72 hours, no pain relief, I removed it & went to put on my 2nd patch.

Now, according to my Dr. I’m supposed to be able to continue my other meds like Baclofen (a minimally at 20mg effective muscle relaxer) for my back and other meds, but it’s scary because if you research Fentanyl patches, you’re NOT supposed to take Baclofen or Ondestron (nausea) or if you have respiratory issues (which if you’ve been reading my updates (above and beyond bronchitis) I have serious problems with. I can’t take my cough medicine (Robafen AC) because it has codeine in it and I can’t even use a heating pad when my back hurts because it’s dangerous if your body temperature elevates too much while on the patch. (it can release too much of the medication).

So, my back started spasming. Sometimes the pain is a 10! Other times it just feels like excruciating tightness, like there’s a claw pinching everything and it’s not pain, pain but a dull crimping sort of thing (pain level 5 - 6) but it causes 1 of 2 things. searing pain down my leg (heel pain in both heels) which I’ve learned is a direct response to L4 - L5 / L5 - S1 discs which I have herniated / bulging among others. Or restlessness.

Now, that’s difficult to describe to those who don’t have it. A constant feel to move, bend your knees, sit, stand, walk, lie down, stand, lie down, walk, sit… it drives you f*cking INSANE!!! I absolutely understand the high suicide rate related to it, I even brought it up to my mom while it was happening to me last night. I am heartbroken over it. You don’t talk about killing yourself in front of your mom. I hate myself for doing it! (and it’s not the first time). :(

Now, mentally, yes, I’m depressed, but I’m not suicidal. My greatest passions in life are my work. I’m going to help solve homelessness one day and positively change the environment forever (I KNOW HOW) I have the shows all mapped out, but I need to survive this first!

So, I was freaked out, took Ropinerole (for restless limb syndrome) but it kept getting worse. My back was stiffening up, but I wasn’t thinking clearly, I wasn’t thinking that it was all related to my back. I was panicking! I wanted to take a scalding hot shower or use a heating pad, but I was afraid to with the Fentanyl. You can’t get hot, overheated etc… while on it, it may cause you to absorb the medicine more quickly which as I mentioned previously can be dangerous, even lethal. But it kept getting worse, I couldn’t be still, I couldn’t relax, I was FREAKING OUT!!!

I thought maybe because I struggled to get the Fentanyl patch on that I got some on my fingertips (which increases absorption). So I ripped the patch off of my arm, waited about an hour and took Baclofen. Things continued to get worse!!! I was so panicked, am I overdosing? I’m so cautious about meds, I HATE drugs… WTF was going on???

Finally, I decided to use my heating pad, It gets extremely hot!!! After about 2 hours, things calmed down.

Everything was because of my back going into spasm. It wasn’t the Fentanyl. I was completely overreacting, I’ve never done drugs, as I said, I HATE them, so that’s just where my mind went. Now, I’m sitting here, no pain meds and my overall pain is through the roof. Back, hurts, tummy hurts, joints all hurt… my heart hurts (emotionally) I’m hacking my brains out… I can’t get a higher dose of this patch without having the 12mcg one on for a while, it has to be incremental. But if I need this for pain, I may not be able to manage my back issues and if I can’t manage that, I might as well be dead.

Pic is from this night (after the heating pad) but still in so much pain (physically and emotionally) that I was crying. I’m not happy about posting this and I’m not trying to be brave; I just think it helps others to know that pain hurts everyone. I even tried listening to some music to get my mind off of things… IT DID NOT WORK! (Not to mention, these my nice (expensive) head phones that I used for film making / editing and are now broken, so the sound quality is poor and one ear piece is snapped off, it didn’t feel very good). It’ll be quite some time before I can replace these!!! I paid nearly $200 for them 6 years ago. ☹️😭

Idk what to do? (other than call pain mngmt tomorrow - Monday, which I’m of course going to). I also have a GI appt tomorrow, ugh… That won’t go well. I may be hospitalized again this time tomorrow. I just can’t get any relief no matter what I try.

Oh btw… in the last 2 months, I’ve lost about 34lbs. (Sigh…)

Wish I had my friends here, but everyone is 1,000 miles away or more. I really need them.

Last updated June 16, 2019