The Pain Relief Network

I was diagnosed with prostate cancer, at the age of 44, in 2003. We were surprised to see that the cancer had spread; and that the cells greatly resembled virus cells.

My doctors jumped on this, know it would affect the treatment. It turns out, and NIH will deny this forever, that a trial study I did for an HIV vaccine went terrible wrong.

I was and am HIV NEGATIVE, and that is what they needed. This was a DNA of the virus vaccine. I was in the last dosing group, getting the highest amount – thought this was a double blind study, when things went wrong it was opened up.

In my group of seven who had received the vaccine, two had HIV – but, there is no way to be sure it came from the vaccine and not behavior. Then another person came down with RA, and next, someone died of something never released.

The study was stopped and I seemed fine. Then, about six months later during a routine exam my doctor, having done blood work found my PSA to be high. We moved fast for it was moving fast. I had surgery, we found the cancer had spread and we did the highest level of radiation allowed, in a wide form moving to a smaller area as time went on. I also had hormonal therapy and drug therapy.

Things seemed okay, but I was having urinary issues and I had what is called a male sling. They use part of another muscle, then a plastic device and metal to build a new bladder sphincter.

When I woke up from surgery, a few hours later they asked what my pain level was. I was honest and said an 8. Fairly normal for the day of surgery. The problem is that the pain has never stopped.

Every second of every day it feels like someone is kicking me in the boys – just over and over – never ending. And my left upper leg was numb on one side and felt on fire on the other side.

I have been to a few pain clinics and my primary physician likes the one I am at now. But the amount of pain killers and other drugs I have to take just not to CRY is very high. By 2 pm each day I am exhausted from the internal fight of my body.

Then things decided to get worse. After a lot of lower back pain – I mean scream and cry pain, it was found that five (up from two) vertebrae were falling apart and three (up from two) of the bladders were rupturing. A new pain to go with the old. Together they win, though this pain clinic really gets it – they get the emotional, physical and even spiritual side of living in such pain.

I applied for disability insurance through my policy with Mass Mutual. They took a look at all of the medical records and gave me the highest amount, based on my policy. It begins three months after my primary doctor says I was totally disabled. And, he had wanted to do that for some time, especially how the pain and the meds were affecting my natural cognitive abilities.

By night, even though I have meds, I dread it. They don’t really work and I just can’t wait for sleep to take over. I may not sleep real well, but it is easier than trying to stay in a good mood all of the time.

In the end, I will be fine somehow – through the surgery, I assume. But, things can’t get too much worse, can they? I do know there is no silver bullet.

As I found out, they can. The pain also intensified in both hips. Most likely I will need hip replacements on both hips, or that is the current thinking.

Also, we are taking out the male sling to see if that will relieve the pain from two nerves which are under one of the thirteen screws in me.

Then, this from a few weeks ago:

Nothing seemed to be bothering me, or none that I could admit or feel at the moment. I took the correct amounts of my nighttime vitamins and minerals, then the same with the last of my meds for the day. That was until I got to the last medication. I opened the bottle and chewed over 300 mg of Klonopin. That night I just picked it up and opened the bottle and emptied all into my mouth and chewed away. I just kept chewing and swallowing.

Within milliseconds and while the last of it went down my throat I knew I was wrong, and most likely not going to live to make things right. But more, two thoughts hit me at once: 1) I didn’t want Howard (my partner of 16 great years) to come home to find me dead, he deserves so much more from me than doing that to him, especially since we had just celebrated our 16th anniversary together. And, with that thought was that my Higher Spirit just didn’t want me to leave this earth in that manner, there was more to do here. There was not fear, which surprised me.

I made it to the phone, got to 911 and was able to get out where I was and what happened before I was out cold. Though, I did wake up in the ambulance as I threw up the charcoal they gave me before the vehicle even moved, they new this was probably going to a successful suicide.

It took the doctors, and even the chemists who created the drug, and my oncologist to figure out how to change the direction I was going, mostly down. My heart held strong, though I stopped breathing for a few days. I woke up to find myself choking on what I thought was a plugged ventilator, though I don’t think it was, plus my hands were tied across my chest to keep me from pulling out the ventilator should I wake up. I have never seen these restraints, but the straps were soft and strong, and from there it was like a plastic covered cable, though small. I somehow ripped the restraints from the sides of the bed and pulled the ventilator out, while it was still inflated to keep it in me. I really messed up my throat and severely damaged my vocal chords. At this point I lose my voice by mid-afternoon. I also kind of sound like I have laryngitis most of the day.

I was in and out of consciousness, and listed in grave condition.

Meanwhile, Howard got off work and came home, to find the police still here. They had called my mother (I belong to http://www.emergencycontacts.com, with lists contacts, doctors and numbers, a brief description of my health, and a list of my various prescription drugs and supplements – some of which are as deadly as the prescription drugs). Howard called her to let her know he was on his way to the hospital, only five minutes away. Once there he found out how I was doing and called my mother back. He had to talk her out of driving down here at 4:30 a.m. He asked that she trust him and that he had total faith, though it rarely happens, that I would move up to serious condition from grave condition. The clock was against me. But, the doctors and the full team worked hard.

When daylight broke Howard called Frank, my sponsor, my brothers and sister, his parents, and his sisters (one whose husband was just down the hall waiting for a donor heart.)

It took some hard work, but they got me back to a serious, but stable state. Yet, even now we don’t know how long some of the side effects will last. From the ICU Step-down Unit I was supposed to go to the psych ward for 1 day to 4 days, my call. It was an agreement I had made with Howard and the Head psychiatrist. Unfortunately, the damage I did to body led to almost 6 full of intensive vomiting. This is normal for me and happens about once every three months. I usually vomit in the morning, only once, about twice a week. So, when I was ready, they moved me into the main hospital ward.

After a lot of work on the part of one doctor in particular on day six we hit the mix and I stopped getting sick. I was actually able to keep some water down, plus a piece of French Toast, which they made me eat in an hour. Then I had to take an hour to drink one glass of water, which had yet to stay down. By the afternoon they were ready to discharge to the Psych ward, but my insurance company balked and would only approve an intensive, daily, two-week treatment plan. The crazy thing is, no pun intended, is it costs more than double, but is a much better fit; I just can’t figure the insurance guys out. My doctors feel this will really help me understand what is called, “pain depression, ” which doesn’t present as other depressions. The person is almost totally unaware of it, making the assumption it is the pain bringing him or her down a bit, they think that they are not isolating, when they are and a list of other things. I was released with a diagnosis basically stating that they believe it was a one time event brought on by acute stress and Pain Depression masked by an overarching medical condition (pain). They did not give me a clinical diagnosis, which is great should I want to go to work somewhere rather than re launch my company Blink Communications, Inc (www.blinkcommunications.biz. There is time for making that decision.

Once we get Social Security Disability in place, and we have great people who know the system helping us out, I plan on going to our house in Costa Rica (www.atriptoparadise.com. My partner thinks I should take ten days to two weeks, whatever will work for me.

I am taking him up on this wise idea of his.