My story: part II Background issues
My story Part Two: Background:
Feel free to use anything you see here ( or anywhere here on my blog) in any way you see fit. You have my permission to publish or use it as long as you link back here.
I figured it would be a good idea to get this down in print so everyone could know *all* of the details of my case.
I have (currently)
– Congestive Heart Failure -We found this out a year ago when I went into the hospital for pneumonia. It is not enlarged, it is *very* enlarged. (Though
The thickening of the walls isn’t Too bad.) It is compressing
My left lung and causes pinpoint bleeds on occasion.
– COPD- What can I say? I smoked 2.5 packs a day for 20+ years.
– High Blood Pressure- Controlled through lifestyle changes and medication.
– Diabetes (Typo 2)- Also controlled through lifestyle changes and medication . My AIC is 6. Down from 14 last year. I have Been borderline for 15+ years.
– Severe Chronic Pain- I tore the Ileo-psoas muscle on my left side where it fuses to the
Hip bone. I also have a compressed sciatic nerve (left side) that constantly feels like I have a red-hot wire/rod stuck through me from the left groin through the left, middle of my back. *Any* Movement of my waist / legs makes it worse. (If that’s possible.)
– Peripheral Neuropathy- My hands and feet are partially numb with bands of no feeling
Running up my arms and legs. Untreated, they feel like I have been “steam-burned’. *ANY* touch is painful. And it hurts whether they are touched or not.
That’s it. That’s me.
Last year, while in the hospital, the doctors stood in front of my wife Shawna and I and told us in no uncertain terms that I probably wouldn’t live a month. Any one of four or five conditions would end my life. They said to get our affairs in order. That my smoking was not only *killing* me, it had *already* done so…
After walking around in a daze for a day or two, we went to work. I quit smoking. I cut *WAY* back on carbs, fats, and junk foods. (I rarely eat white bread or fried food now.) I tested my blood sugars and tested them OFTEN. I shot insulin and watched as my sugars slowly dropped into *acceptable* range. (A fight I continue today.)
I went on supplemental O2. *All* the time. They said use 2, I used 4. They said sleep with 3, I sleep with 6. Just to make *sure* my O2 levels stay up. The lung doc I saw said I *had* to have a CPAP. I tried telling him I couldn’t wear a mask at night because I am VERY claustrophobic. He said “I’ve heard that before. You’ll get used to it.” I tried telling him I scratched the cannulas off my face (and often skin as well) in my sleep. He said I needed to “stop being a drama queen” and do as i was told.
I bought an oxymeter and recorded my sleep breathing, adjusting how much and how I wore O2 until I was *Positive* my O2 saturation *NEVER* dropped below 90% I recorded more than a week’s sleep/awake cycles to prove this. He didn’t care.
When he realized that I couldn’t and wouldn’t wear a CPAP mask (And missed an appointment his office set with me without ever talking to me – I saved the message) he wrote a letter to my pain doc saying to take me off my pain meds. “For my own safety”, of course.
It had nothing to do with the fact that he thought I was blowing him off. Nothing punitive like that! Heaven’s no! Of course my “Critical” condition” was *SO* critical that when I called in repeatedly for an appointment *his office* blew me off for months and when, after he had decided to destroy my life, I called for an appointment, they set it a month and a half away. SOOO “critical” his office would not respond to any calls or letters I wrote them. Yeah. *face palm*
My chronic pain(s) were fairly well-controlled on roughly 360mg of morphine a day. I never abused my meds. I followed all the rules. I did every test, procedure, or exploratory test the office asked of me or that I brought in myself. We tried all the non-narcotic medicines first, to no avail. We tried facet blocks (painful as hell, btw) epidurals, and many other techniques. The only treatment that would hold was the morphine. This was never about the drugs, just about the treatment for my pain!
I was on a stable dose for over 3 years. In that time I lost weight (wanted more but took what I could get.), started exercising, and began to *live* again! I washed the dishes, walked the dog, cooked dinner for my family and could even go to a school play or picnic every now and again. I was nowhere near as active as before I was injured, but I felt like I could actually be a part of my family’s lives, instead of just a constant drain on their finances and energy.
A year ago today I was applying for jobs working from home. Think about that for a minute… I was almost *OFF* Social Security! I could *finally* be a working citizen again! A lot of hard work and sacrifice had gone into that moment. I had trained for over 12 months, undergoing both basic and advanced certification from home, I had gone through the Voc. Rehab program, and saved up for whatever equipment, internet service, they couldn’t provide. I was nervous but excited. Then I got sick. Very, very sick.
In the hospital, when I could barely breathe, pain control was no problem. They just increased my morphine until the pain stopped. No biggie. In the months after is where things started to get twisted. The lung doc, Dr. Rollins-Billings Clinic, said I was merely being melodramatic and a drama ‘queen’. That my pain just couldn’t be as bad as I said. That I was just being stubborn and obstinate, and that I would be dead from it. That people don’t really need pain meds, they just need to ‘buck up’ and focus on something else. (Almost his exact words, by the way.) That attitude then pervaded every decision he made in my case.
Even though I showed him positive proof that my O2 levels were good, that I was being *very* proactive about watching for any problems the pain medicines might cause, he didn’t care. All he cared about was whether or not I was doing *exactly* what he said. Claustrophobia? Pssht! He’s heard that before! I was just faking it, and that was that! Bastard.
I went to another lung doc last week. Showed him some fresh recordings. Discussed options. He said it looked like I was *very* prepared and proactive. He didn’t understand why the pain clinic would titrate (take away) my medicines when any problems had been so *thoroughly* taken care of and watched. Yes, I have some diminished lung capacity, but I was taking all the right steps to deal with the issue.
The pain clinic didn’t care. I offered to wear a 24/7 monitoring bracelet so they could verify my O2 levels stayed ok. (It would send them up to the minute reports vie WiFi.) No response. I have called them repeatedly asking what I should do now that I am in agony 24/7. No answer. No return calls. I called their after hours line asking what I should do. No answer. No return calls. Just a letter a few days later saying they will see me on Oct. 3. (Two weeks away.) Not just “we can’t help you.” SILENCE. NO RESPONSE AT ALL. Nothing.
That’s not right.
And it is *NOT* about the medicines. It about the reduction in my pain! When I asked them what we were going to do insteadof using the opoids, they just stared at me with a blank look. Silent. No ideas. When *I* finally brought up a pain pump (spinal) he said they would “think about it”. WHAT?!
What am I supposed to do, go crawl into some corner and howl why they “think about it”? Maybe die?
***A trapped animal will often chew its OWN leg off to escape from a trap. What can a person that cannot escape their pain do? Exactly. The hold out for as long as any kind of hope lasts, then they quietly ‘off’ themselves. Just to make the treatable, controllable pain stop. All because the war on pain pills by the DEA has doctors and pharmacists running scared. Made them too afraid to treat high or moderate risk patients the way they so badly need to be treated with one of the greatest analgesics every found.***
It was one of those “Don’t go away mad, just go away.” moments.
And that is *WRONG*.
If I was someone’s dog or cat, I would get treatment immediately or the owner would go to jail for animal cruelty!
And that is what has set me on the path I now take.
To be a voice for those thousands of other human beings being thrown out into the cold darkness by the FDA’s war on pain pills.
See, one of the nurses at the ER said something in passing that brought it all into focus. ‘She was surprised that with my conditions I could find anyone to treat me at all. It was career suicide to do so. If I died on their watch, while using narcotics, they would be finished as a doctor. (Whether they had done anything wrong or not. Look up the case of Dr. Nelson from around 2205. They closed his office because two of his chronic pain patients had died. He had never had *any* problems with the state medical board. NO complaints. In over 30 years in practice. And then, to add insult to injury, his patients then found it impossible to find another doctor to see them. Anywhere. It wasn’t until a state Senator stepped in that a local clinic would “see” them (though not *treat them*, just pat them on the head and say “There, now you’ve been ’seen’. Aren’t you happy” and shoved them out the door. Most of those patients then committed suicide.)
This “War on Drugs” has *real* victims. I am one of them.
And there are thousands of others suffering silently across this country due to the DEA’s war on pain doctors and Pain clinics. And it has to STOP!
When a CVS pharmacy is shut down for filling “too many” LEGAL prescriptions, it has GONE TOO FAR!!
When a person in agony is left untreated out of fear of Gov’t retribution, IT HAS GONE TOO FAR!!
These are PEOPLE you are hurting!
These are Human Beings you are killing!
You may not pull the trigger or tie the knot, but their blood is on YOUR hands if you don’t stand up and help make this victimization of the weakest amongst us STOP!