I have Gulf War Syndrome (GWS) AKA Gulf War Illness (GWI); I only distinguish between them as a time reference or Political Statement: that said a lot of people still don't understand that; the cause is not what I want to discus here, but its Genetic Damage that I am talking about, but its dealing with it that I want to talk about: so let me tell you what it means to me.
First off, the VA defines Gulf War Illness to effect some Military personal during the Gulf War from 1990 to 1991 and to includes these symptoms:
I'll address the things that I have problems with the most: Sleep Disorder, Chronic Fatigue, Headaches, Gastrointestinal, Respiratory, Neurological problems, Muscle and Joint Pain; well that covers most of the symptoms of Gulf War Illness; so it is safe to say that what I want a new drug for is related to GWS.
I have tired about every Pain Medication I know of; like: Morphine, MS Contin, Codeine, Napproxen, Naprozyn, Idocin, Percocet and Demerol, including off brand use of Psychiatric medication like: Lyrica, Gabapentin, Effexor, Elavil, Flexairil, Prozac, Zoloft, Pamelar,Temazepam, Klopin, Trazodone, Depakote, Serzone, Paxil, Robaxin, Valium, Wellbutrin, Citaopram, Luvox, Ludiomil, Nardil, Parnate, Asendin, Anfranil, Norpramin, Sinequan, Tripramine, Triptil, Surmontil, Cyclobenzapppine, Lansopprazole, Clarithomycn, Remeron, Zanax, Ambian, Quietipine Fumarate, Rabeprazole sodium, Methyphenidate, Ranitidine, Prednisone and Lorazepam just to name a few; none of them helped all that much if at all.
I have a rare sleep disorder called sleep misperception; basically it comes down to Lucid Dreaming that I am awake; since my REM sleep is interrupted by involuntary muscle movement; I do not get much REM sleep; nor do I have normal dreams. Its incurable and it affects people with GWS more then people without it; why is that? Maybe the type of Brain Damage that GWS caused to create so many ill affects on people; at least this is my theory. The damage started when the Military forced us (armed guards and threats of court Marshall) to get the Anthrax Vaccine; then they sent us to Kuwait during Desert Storm; where we were subjected to Depleted Uranium, Oil fires, MUD (a chemical used in oil production, it is a Bio-Chemical), Chemical Warfare, contaminated water supplies and things we don't even know about. Then we got sick and became lab rats to test some of the drugs listed above. Its no wonder I have Chronic Fatigue; you don't sleep good for the last 20 years; you'd have it too. My headaches are in the cluster headache group; like a lightning bolt shooting through my brain. Muscle and Joint Pain are all from all the chemicals that are now part of my body or damage from them passing through my body, and the Genetic Damage, which destroyed our 14th Chromosome and attached itself to the 6th and 7th, destroying them as well.
I remember feeling good; back before 1990; then I remember feeling bad; since 1990; like time is drawn into two lines; those before 1990 and those after 1990. Feeling bad to me is hard to define; like having the flu and a very bad hangover after running a 100 mile marathon with full gear and falling down a mountain for the last 5 miles hitting every rock on the way down. My back hurts, my hands hurt, my feet hurt, my jaw hurts and every joint in my body hurts. Hurt is not a strong enough word for it sometimes; they call it Neuropathy; its when all the nerves fire off for some unknown reason; it can feel like a burning sensation like its on fire or like its gone to sleep and you feel like thousands of needles are being stuck in you. I ca not begin to describe how much it hurts at times. As a result I suffer from Major Depression. I will go days without any good sleep and the pain will become overwhelming and I will start having anxiety attacks; this is a cycle I go through. I have a very bad ringing in my head; I use to think it was in my ears; but its not; its in my head; it drives me crazy; some days its louder than others; sometimes its so load its painful at times. My threshold for pain is lower than it should be; just a small cut or bump from falling down can be a major problem (as is falling down since I feel dizzy at lot); just little pains can become overwhelming at times. I smell things that no one else can spell; sometimes a smoky smell like rubber is on fire, other times it smells like something died. Emotionally I am a wreck; everything upsets me; I'm sensitive to everything; I ca not stand to be around a lot of people; sometimes I do not want to be around anyone. I get paranoid and feel claustrophobic at times. I do not have any good days; just days I do not feel as bad.
I want a drug that will make me feel good or at least better. I want a drug that will not make me tired, drugged out or strange. I would like to be able to think while I am taking this drug; most drugs make it hard to think. I hate drugs that make everything look like I am looking through a view finder; I do not like feeling like I am walking on sponge rubber floors either. I want a drug that I can sleep well on; not be so out of it that my body skips the REM state all together; not that this part of my sleep is all that good anyway since it always wakes me up. I do not want a drug that will make me not care about anything; most anti-depressants work like that. I do not want a drug that makes me feel drugged.
Problems with Narcotics and any Drug "God" did not make is that our bodies reject it; by God I mean Nature, when I say man I mean Human. Nature made Opium and Marijuana, man made Morphine and Marinol, Opium and Marijuana are easy on man and have little to no side effects; Morphine and Marinol have many side effects; they are known to cause panic attacks, depression and shut down your immune system and digestive process; thus making you sick or sicker than you should be. Morphine makes me shit a brick; its a figure of speech that best describes the full effect I get when on Morphine. I have more panic attacks, more depression and feel like I am dying; overall you feel like you need more so you increase your dosage; which makes things much worse. My body started to shut down; I would start having bowel movements once a month and it was literally like shitting a brick; I now have Diverticulitis as a result of that experience and that hurts so the doctors prescribe more pain medication. You see the cycle here; its ground hog day; you wake up every morning and Deja Vu, didn't I go through this yesterday. Man made drugs have not helped me at all; in fact they have made things worse; yet if I do not take them the doctors want to tag you with words like "Malingering:, faking an illness; you will never convince them that the medication does not work; its like if you have this disease take this; if that does not work then you do not have that disease. Doctors are not that smart, in fact all they know is what they were taught and that is a bunch of shit and since its was taught in a brick building, you can say they are shitting bricks also, their Practice is just that, which Doctors am I talking about, you got it, Witch Doctors, that is what they all are.
Pain is a pain; dealing with it is a pain; living with it is a pain; living with someone who has it is a bigger pain. I say that pain causes depression and depression can cause pain; but which comes first? Once you are in the cycle it is endless; like a dog chasing its tail. People always want to compare their pain to yours; like it will make you feel better; its a slap in the face so do not do it to others; my first reaction is to kick them and ask if that hurts, its that irritating to me, when someone wants to share their pain with you just listen; their pain is theirs and yours is yours. If your pain makes it hard to sleep at night and makes you wish you were dead and all you can do is cry, then its a pain I am talking about. Doctors want to know on a scale of 1-10 how much it hurts; if you crying when you tell them; then its a 10; if you feeling like grabbing them somewhere it will hurt and asking them the same question its a 9. No one has the right to judge how much your pain is; only you know; and you have to know how much pain you can live with or how much of your pain people around you can live with. Pain is like a face; everyone has one; some are uglier than others; but everyone has pain.
Is Opium or Marijuana going to be that drug? I doubt it; but it has to be better than all these other drugs. It might help me sleep so I do not need to take drugs during the day; that would be my biggest hope for this drug. In some states you can get a license for Marijuana, I doubt if they will be giving out licenses to grow Opium any time soon. God gave us a drug to help; the Government took it away; what gives them the right to do this?
Legality has been one of my biggest concerns; I do not want to get into trouble by the Law, State or Federal Government or the VA.
Although you can get a Medical Marijuana Card; it gives you very little protection at all.
The cost varies from state to state, I have seen some states that have a reduced cost if you are on food stamps;
but not if your on Disability, go figure that one out,
this is nothing more then the states way of making money and nothing to do with helping people.
In fact I would say a great deal of people in this program are using the drug for recreational use only;
which is why no one takes Medical Marijuana as being a drug seriously.
If you use just the right amount you can get pain relief without getting high;
you can do the same thing with narcotics or alcohol; you take too much and you feel drugged;
there is a fine line between taking a drug and abusing a drug;
if you take it just to get high; your abusing it.
This is why the laws were invented to begin with, at least that is what they want you to believe;
besides the fact that the Federal Government was not making any money selling it;
besides the CIA and DEA that is; now that the State found a way to make money off it again,
the laws are changing again.
But will the VA see Marijuana as a legal drug to take?
The VA screens us for illegal drug use all the time; what will happen if Marijuana starts showing up in those test?
The VA makes you sign a contract stating you will not take any illegal drugs (as if the legal ones are any better); but if Medical Marijuana is legal in your state does the VA consider it legal? Recently the VA directives have changed to allow Medical Marijuana in states where its legal.
For Marijuana to be made into a drug; it would have to be processed into a pill form; smoking it will do more long term damage then the benefits could out way, not that it causes cancer, but all that tar can not be good for you; it has more tar in it than cigarettes; but its not as harmful, nor does it seem to cause long term health problems, as cigarettes do, and I do not want to smoke pot, there are vaporizers that work better. I want a drug that will help me deal with pain; to be at ease, with the dis-ease; I do not care what people think, smoking pot is always going to be just that; getting high; for some that is OK; to each their own. Now the law steps in again; if I get a permit to grow it; then I process it into a usable form like a pill; that I can take in a more controlled fashion; like knowing how strong it will be; how much I need to take; will the Feds look at it as a new drug? Will the laws allow me to process the Marijuana into a usable drug? I have come up with one solution; Medical Cannabis Butter, or MC-Butter, its easy to make and works great.
Note about Marinol and products like it: They can cause Panic Attacks; its not the same as Medical Marijuana; it has THC but none of the other 60 compounds.
A pharmaceutical product, Marinol, is widely available through prescription. It comes in the form of a pill and is also being studied by researchers for suitability via other delivery methods, such as an inhaler or patch. The active ingredient of Marinol is synthetic THC, which has been found to relieve the nausea and vomiting associated with chemotherapy for cancer patients and to assist with loss of appetite with AIDS patients. Morphine, for example, has proven to be a medically valuable drug, but the FDA does not endorse the smoking of opium or use of heroin. Instead, scientists have extracted active ingredients from opium, which are sold as pharmaceutical products like morphine, codeine, Hydrocodone or Oxycodone. In a similar vein, the FDA has not approved smoking marijuana for medicinal purposes, but has approved the active ingredient-THC-in the form of scientifically regulated Marinol; so its clear that as long as a Pharmaceutical Company is making it; then it does not matter, it can be poison as long as its a prescription based poison.