My story thus far… Part I
I thought I should write my story. Just in case.
You’ll understand that last sentence if you bother to take the time to read this entry. (Or many of the other posts I have dealing with pain.)
MY STORY SO FAR
15 years ago, I was married to a vibrantly beautiful wife, was raising 6+2 kids, owned and operated my own small business that supported us and was doubling in business every 8-12 months. After years of struggle and hardship, welfare, and food stamps and all the other programs, we were finally almost debt free. Only 4 months to go! Then *it* happened. And all of our lives changed forever. Gone were any hopes of being debt free, owning a vehicle worth more than $500 dollars. Any of it.
And what was *it*?
I was carrying a console TV up a flight of stairs from the basement of a customer’s house. It was one of those 6 foot long, 3 foot high wood models that contained the 27” TV, a stereo, 8-track and other assorted bells and whistles. About half-way up the stairs, the customer (who was on the ‘top’ side with the least weight) tripped going backwards. Instead of sitting down with the TV, he instinctively threw the console TV out and away from himself. I was at the bottom, with most of the weight, when I was suddenly thrown forcefully backwards down the narrow wooden stairs. With 200-odd pounds of steel and oak on top of me. I twisted and landed badly. The only thing I could think of at the time was “not Good.”. How little did I know how BIG an understatement that was!
It took me weeks to recover some semblance of normal movement. Thank God we still had ‘blood and bone’ medical through the Fed! As it was, I was able to get enough pain med to continue working. I could no longer work at the break-neck pace required to grow the business, but through sheer will and some decent narcotics, I could keep the wolves on the other side of the door. After a year of this, my primary care doctor said it was just to risky for him to continue to write the size and quantity of pain meds scrips any longer (the “war on Pain” started back then, you see…) and referred me to the pain and rehabilitation department in the local hospital/clinic combo.
For the next six months, while still trying to work days and nights, I underwent various pokes, prods, spinal injections, cat scans, chiro, excruciating “therapies” that just made things worse, all to no avail. Months rolled by as my dose went from level 3 to level 2 drugs, though at a snail’s crawl. It finally reached the point where they told me to stop working or stop walking. Some choice, huh? I applied for disability, was rejected, appealed, then approved. At this point my med file was fully 4 inches thick.
It took 20 months for SSDI to finally come through. I think maybe they try to “starve you out” before finally approving you, personally. (In and of itself a travesty!) We lost *everything*. House. Cars. We were actually homeless for 4 months at one point, and only were ably to move into another home because of work we did (all the while I was in crippling pain) and the generosity and sacrifice of family and friends.
The head of the rehab dept took my case history and file to a symposium in Seattle and presented it. They suggested high narcotic doses and maintenance. The head of the clinic, in one of his last acts before he left told me they just “couldn’t risk writing scrips for you at that level. The Feds would shut us down and we have other people that we can help.” Sound familiar? It was 2007. This was no idle threat. A doctor in our area was crucified in the press and courts for daring to treat chronic pain patients with narcotics! His patients found themselves cut off from *ALL* pain meds and seemingly black-listed by the FED. They would travel many miles only to be suddenly turned away because the clinic had received a call from ATF. Several I know killed themselves shortly after.
I was referred to and accepted at the regional (and only) pain clinic for around 300 miles. At my very first meeting I was told “You are almost criminally under-medicated.” and my dose was raised by a factor of 10. For the first time in my memory I didn’t “hurt”. Not much anyhow. I could actually watch my kids at play! Go to their schools! Cook them dinner! Clean (a little) and even wash dishes again! I could even go camping again! I had forgotten what it was like to be anything but in a balled up haze of pain.
As I adjusted to my meds, we had to up and down the dose to “dial it in” properly. I learned that when on opoids, just like with other meds, the body could build tolerance over time. Fortunately, I was actually able to cut mine down a bit and still begin to rebuild my life! I started moving more, walking, going shopping, driving. I started relearning computers, typing, web protocols. Slowly but surely I was rebuilding my life! My wife no longer had to watch me slowly descending into a hellish world of agony every minute of every day. Sure, there were flare ups still, but overall the progress was good.
I was stable for 3 years on a dose and had gone through the Voc. Rehab. Office to retrain to work from home. Since I had a few other disabilities, we found work-arounds for them, and planned a future of me working from home via the web through a gov’t backed company that specialized in finding contracts for the disabled. I would never be able to work the way I did before, but I could WORK again. And that was more important than anything else! I studied hard and passed the basic and advanced certifications and received high marks and praise for my abilities. It looked like I might even be able to make something more of my life that having to depend on the gov’t dole for the rest of my life!
In late September of last year I got pneumonia. I had been feeling poorly for months, even losing some of the feeling in my hands and feet. (I had to relearn how to type at least 45 words per minute without using four of my fingers. Now THAT was interesting, let me tell you!) When I finally couldn’t take it anymore, we went to the ER. (I hate hospitals with a holy passion.) In the ER they delayed putting me in a room for 9 or 10 hours. I heard the nurses talking. They didn’t think I would survive the night. There were new directives in place since the ACA was passed, and they didn’t allow for wasting space on the soon to be dead. And I was apparently in that category.
They did an echo cardiogram in the ER and the tech left without saying anything. Then the head of the dept said there must be something wrong with the equipment and did the test himself. He patted me on the shoulder and also left the ‘room’. The nurse’s station was right next to my ‘curtain’, so I got the joy of hearing that they were to put me in a room and give me whatever I wanted/needed to make me comfortable. No restrictions. He told them if I lived through the next 24 or so hours, he would retest me. Apparently my heart was not just enlarged, it was *very* enlarged.
I spent the next 24 hours in a painful haze as they did everything they could to clear my lungs and help me breath. They worked overtime to save my life and the nurses there were phenomenal. I may not have given them much to work with, but they soldiered on and kept me alive! (Much to the chagrin of the kitchen, they didn’t understand why I should be allowed to order hand-made drinks at 3am, but they grudgingly did so.) Over the next 40 or so hours, multiple teams of doctors, nurses, clergy, and others paraded through my room. Few even spoke to me. (Other than the clergy. That was just too odd to go into here.) They just thumped, measured, took blood, and inserted iv’s of steroids, insulin and morphine. I just slept, mostly. Or tried to.
At 5 or 6 am on my ?second? Morning there, the head of the heart dept came in and chased all the nurses and others out of the room and told them he and the equipment he brought were NOT to be disturbed. They listened. The doc did another, more advanced ECG using the latest imaging gear. He told me that Medicare wouldn’t cover it so he was doing it on his *own* time and not even billing it. He was there for about an hour and concluded by sitting on the edge of my bed and talking with me for a bit.
He told me heart was bigger than any he had ever seen. It was compressing about half of one of my lungs. There appeared to be pinpoint bleeding along the lung due to the compression and movement of my heart. The prognosis was not just poor, it was abysmal. He said if I lived to Halloween, he would be surprised. I needed to get my affairs in order and say my goodbyes. (Almost his exact words, btw.) He opened the door to the circus and silence reigned as the machines were removed and replaced with my belongings again.
My wife and daughter would stop by every day at lunchtime to visit, so I would order extra food and sodas they could eat off my tray. (Most of what I needed came through the IV’s at that point anyway.) It was funny when the “diet manager” stopped my cart and replaced all of my *non diabetic* foods with “proper” alternatives. I called down to the kitchen and the head cook said it would be taken care of. (I had filled in the nurses and the cooks what I was doing ahead of time and had done so for two days now. They were monitoring what went in and out, so they knew I was telling the truth.) Within 5 minutes a brand new tray with *extra* “goodies” was wheeled into my room just ahead of the girls. It makes me chuckle, but it demonstrates just how poor my prognosis was. I had a blood sugar of 256 and an AIC of FOURTEEN at this point. (Normal blood sugar is 80-120 and AIC is 4-6.)
At the end of the third day I told them I wanted to go home and they said okay. (There wasn’t much they could do at the hospital anyway.) The care coordinator ‘Doctor Mary’ came by and spent an hour or two with Shawna and I explaining how things would probably progress over the last thirty or so days of my life. We spoke candidly, asked and answered questions truthfully, and tried to prepare ourselves. (In truth, we walked around bawling our eyes out for the first week or so. Shawna managed to keep up a 4.0 during all of this, btw. I am SO proud of her!)
Over the next few weeks I increased my O2 use at home and did what I could to lower my AIC. There were major shifts away the southern fried cooking I grew up with and loved. I did sleep studies that showed I had a *very* minor problem with panting in my sleep, and we watched as I shed around 40 pounds. (Mostly retained water.) I followed every directive except getting a CPAP mask. (I’m HIGHLY claustrophobic and actually claw things off my face in my sleep.) I explained this to the lung doc and purchased a home oxymeter (pricey!) to make absolutely *SURE* my O2 saturation stayed above 92%. I recorded a week’s worth of sleep and awake cycles to prove it and thought it was dealt with.
In about Feb. my pain doc said he wanted to bring my lung doc into my treatment team. (Whether I wanted it or not.) I expressed my reservations with that particular doctor since he seemed to think pain relief meds were ‘evil’ and just an excuse used by the weak. I was over-ruled. I attempted to get an appointment with his office for 4 MONTHS, only to be told time again that I need to call back in a week or two and try again because he was booked solid. (Yes, I took down dates and times.)
Finally, In August I dropped off yet another set of recordings showing my saturation stayed well above 92% and asked again for an appointment. A few days later, (I later found out) his office left a message on my lousy cell phone saying “we have a few openings if you want them tomorrow, give us a call if they will work for you.” which somehow translated into a confirmed, then missed appointment. (I kept the message.) It was at this point things went insane!
Said lung doctor then wrote a letter to my pain doc saying I should be removed from “all” narcotics “for my safety”. Huh? Suddenly my “minor” problem was life threatening? I found out about the appointment only after my pain doc then wrote me a certified letter saying they would be taking me off ALL my pain meds. Within 5 weeks. I took them my reports and tried to get in touch with the lung doctor only to be told that his “earliest” appointment was now more than a month away.
I went to an emergency meeting with my pain doc where he said he had no choice but to take me off my meds. I begged for time for a second opinion, I tried to show him proof I *had* no problem that wasn’t dealt with, but he didn’t care. When I asked him what we were going to do about my pain, he just sat there staring at me. When I brought up a pain pump, he said he would talk it over with his team. Next week. Maybe.
For the last month I have rapidly descended into a living hell of pain. I went in to a different lung doc and queried him extensively about my condition and appropriate therapies. He said I was the most pro-active patient he had seen and that any therapy would be acceptable. I immediately wrote a letter to my pain doc saying what he found (my condition was no worse than two years ago and he saw no reason not to treat my pain.) but got back, again,…. Nothing.
Over the past ten days I have called the pain clinic 5 times. Because they have so many patients, you are diverted to a ‘triage’ line. I left messages telling them the pain is so bad I haven’t had more than a bite of food or a few sips of water each day for over a week. I asked what I should do. I begged for *ANY* response. Nothing. I called the after hours number asking about going to the ER (I have a pain contract forbidding such things without authorization.) only to be told (After a long wait and a call back) that I could go in for a shot but NOT a prescription.
I called them 3 more times today asking the same thing and reminding them that it isn’t withdrawal causing this, but the mind-numbing, soul-searing level of pain I am in. I reminded them that they are my Doctors, and simply deciding to not treat my pain was unacceptable, illegal, and unethical. Again, I got back….. Nothing.
And I am angry. And frustrated. And not a little bit suicidal.
More if I am still here tomorrow or the next day….