I'd written a post for this blog yesterday and then later on, came back and deleted it. Why? It was about pain and how I was feeling at that moment, which was suicidal and full of despair in the face of a steel wall of pain that was not on front of me, but which was on TOP of me, crushing me to the ground. I've been in horrible pain for many years. And I'm really pretty tough about it. Most people do not have a clue about the degree of pain I'm in because I've always taken some kind of pride in hiding it and in acting like I'm "fine." But there come moments, and while they are rare, they have been increasing in frequency and in intensity; when my "iron will" becomes rusted and flimsy and collapses under the weight of a pain that defies description, it's limitations, the fact that I have no hope of any improvement over time but only a worsening of symptoms... In these times I fall prey to self-pity, some anger, and absolute despair.
That's how I felt yesterday. My pain was in a terrible flare (possibly due to the approaching hurricane and the low resulting barometric pressure) and I haven't slept more than an hour or two in a night in many weeks. Combine those two factors and you have a recipe for collapse. And I did. I even cried. And I am not a "crier." I finally called my pain management doctor whose male nurse called me back and I sobbed out, "I need help." Unfortunately in that conversation, I mentioned the word "jump" (as in: from something very high). This of course blew all the man's alarm buttons. It took me a while to calm him down and to understand that it was a FEELING and not a PLAN. And also to reassure him that that feeling had passed. And it had. Why? Because of a website that I'd found that morning.
The website: http://www.foresttennant.com/, is written by a doctor who is a pain specialist. And in this website he offers a large amount of literature which he has written for the person who suffers, not "chronic pain", but "intractable pain" (IP), which is, he explained, an entirely different condition...Much more rare (only about 1 in 1000 chronic pain sufferers actually have IP ), much more deadly (a person with untreated IP will suffer numerous physical problems as a consequence of the severity of the pain itself, many of which are life-threatening, and all of which are life-shortening.), and extremely difficult to treat and to manage.
He then put, in PDF files, some literature he'd written in a nice combination of medical terms and layman's terms, for the pain sufferer, many different recommendations and actual necessities for the IP patient to follow in order to attempt to manage their pain. Some of these were things that I'd already discovered for myself simply through many years of attempting to "self-manage" this illness. And some of them are things that I'd never heard of, but which make complete medical sense. He also displayed an admirable openness to herbal and supplemental remedies and recommended some of those as well. But none of it was "quackary"...and he wasn't selling anything! The information is all free and downloadable and was simply published on the web for the purpose of aiding people like myself.
So why am I telling you this? Because reading this website did three things for me:
1) It let me know that I am not crazy; it validated the fact that my pain is intensely different from the aches and pains of the people around me...and there is a NAME for it.
2) It showed me that I must get serious about treating this problem medically and not just toughing it out. There is no honor in that. It is only stupidity. And it will kill me.
This will involve taking ON A REGULAR BASIS, opiod medication - which I've already been taking...but on a regular schedule...so that there is no time, when I am without medication in my system. I'd been in a great state of denial. I was wrong in thinking that I could "beat" this pain into submission with my own "iron" will, because even while I was "enduring it" and even exercising despite it-- it was destroying my nervous system, my brain, and most of my internal systems...quietly and insidiously. In the end, the pain would win. And I stand to lose everything.
3) It gave me hope that there are still some treatments available which I had not yet tried. And they are not really difficult things to carry out. Some supplements, some exercises, new medications and combinations of medicines, a diet plan, the creation of topical creams which I could make myself using my own medicine, some supplements and a base, hot and cold, understanding my triggers and avoiding them, and most of all, an attitude. The attitude is one that knows that I have a serious, life-shortening illness, but rejoicing in life anyway. It is one that takes in all the facts and uses them to my own best advantage. It is one that works hand in hand with my doctors and pharmacists and doing everything in my power to survive despite my enemy: pain.
Now, how do I know that I have IP? Dr. Tennant carefully described the illness: its symptoms, its complications, the indicators of it, the damage that it does to one's body...and it was like reading my life story and my own medical history. I have IP secondary to spinal degeneration and joint degeneration and inflammatory arthritic disease. Not just ONE primary cause, but three. And in the list of problems that are caused by this disease? I have almost every single one of the physical and dangerous complications which result from having this.
There is a lot of ignorance out there about crippling pain...the kind of pain that goes on year after year. There is massive ignorance about opiod drugs and their importance and in fact, necessity in the treatment of some illness, IP being a good example. One of the reasons I'd resisted medical advice and not taken these drugs consistently despite my need for them, was that I KNOW that I will, once more, be lumped together with every drug addict and dealer imaginable. And I will constantly have to defend myself, my medical need and condition, and also to constantly attempt to educate people whose prejudices and ignorance runs deep... the list of the "ignorant and uninformed" includes pharmacists and some doctors and nurses as well, who believe (with the best intentions) that no one should take these drugs and that there is never any real need for them. I know that when I get admitted to hospitals, very likely, my medication will be taken from me and that I will have to fight--legally if necessary--to be able to get the care that I need. And I didn't want to deal with it all. But now I see what is at stake if I don't ....and it's no place that I want to go.
No comments:
Post a Comment