Why Can’t I Reach my VA Clinic by Phone?


pain14I was really excited when I was able to go to the Orange City, Florida VA clinic. I thought it would be closer to my house than Daytona, but with traffic and the indirect route it is still almost a two-hour drive. I am amazed by the fact that you cannot call this clinic. Well, I should say you can call all you want, but if you want to actually speak to somebody than I don’t think you’ll want to spend a week on redial with them while the phone rings and rings.

smlkeI should be able to reach my clinic. I just got out of the hospital for 10 days and nobody seems obligated to reach me by phone, however, they love to make appointments I can’t make on my VA pension. I don’t have enough money for gas. They do reimburse me, but it is about a month later. That doesn’t help me this month.

pain5I tried to complain about some of these issues and more and they have just blacked out communication. If you try to call Orlando VA it’s often voice mail. I tried several times to reach the Orlando patient advocate’s office and they don’t answer. You leave a message and unless you raise holy hell like I did last time about how I had never received a call back in 4 tries to contact them in the last few months.
stomachThe woman who called told me that I should make my appointments. Apparently my wife and I should starve because we need to make medical appointments. Oh, did I forget to mention that my wife has serious stomach issues and other things to do with personal issues. Let’s just put it this way – she does not do anything but puke every meal out. Not on purpose, of course, but, because that’s how bad her stomach is.

A surgeon did not tie off right on an ulcer operation for her and she almost died. She had her stomach in a triple hernia and she was very ill. She also has had other issues to do with hyperglycemia.

I have so many issues myself to do with the Gulf War and they are not recognized. Nobody seems to have the time or inclination to help me. I am not worthy of a VA doctor or PA, in my case which is typical here, who probably hates his position there and is going to show it, to actually read my record. To actually see the many issues I deal with on a regular basis. I cannot hardly move from the chair to the bathroom or the bed to the kitchen.

mean docIt seems that things are much different here in Florida. I hate to say it, because it is something locals hate, but I was spoiled in Wisconsin. I know that there are many, many more veterans in Florida. The most of any other state, I belive it is 8 million, but why can’t they ask for more staff? Probably a budget issue. The employees get more money this way? I don’t know, but for whatever reason there’s not way to get people to answer phones, read records, and you can’t even get an introduction, at least not a proper one, from a VA doctor. They don’t want anything but a quick in and out from you. I’m not an in and out kind of patient. I have had my rights violated in so many ways for too many times and it needs to end.

So what do I do now? Well, I saw that the VA “Secretary Bob” has given out his cell phone number and well, I decided, “What the hell!” I’m going to call the number? I was nervous as could be, but I did it. I complained.

My main complaint now is something that I probably should be so ashamed of, according to the VA, I smoked a joint when in pain before I signed a contract not to smoke anymore after they gave me a very small amount of pain killers.

mjI came up positive for cannabis and suddenly I am a “drug addict” I was told I have to “jump through hoops!”

I don’t do hoops since I got out of the Navy and I don’t plan on jumping through any damned hoops again! I grow my hair to the damned length I wish, I don’t shave if I can’t stand in front of the mirror very long and I just don’t take orders anymore.

I have earned that right by the six years I gave the Navy. I wasn’t a perfect sailor, but I wasn’t the worst one either. I did some things that I think are commendable and the point is I shouldn’t have to defend my reputation.
mean doc 2So, I was told I have to see a drug counselor and then report promptly to the Pain Clinic again. After Gainesville and the treatment I got there where I was told I was fat, lazy, and uneducated, I will not go to another pain clinic in my lifetime. I will not see there “pain psychologist.” Which is like “military intelligence,” to me! The two words just don’t go together. It’s a major mismatch of terms. What am I going to use Freud to stop the pain?

TVI_cameramanNext, I plan to contact the local newspaper, TV stations, maybe the VFW in Washington, D.C. or whoever will listen and let them know that even the social workers at the VA are unable to help. They don’t seem to have the time from the things I was told. Nobody wants to do their job or they are just too unorganized and incapable to keep up to the standards of the treatment of veterans that are in serious need of some help like me. They make excuses and say how busy they are and I know they are, but I have also been in the lobby while the phone rings and people who are not busy are just ignoring the phones.

God help you if you are planning to move to Florida. My advice if you are a veteran is go somewhere else if you want good healthcare. I have been to both local VA systems in Gainesville and Orlando and I am so frustrated with both that I am just ready to burst with stress and I don’t need it and neither does my wife. God help you too if you ever become sick or disabled. This country isn’t helping people like me or my wife. They have all these programs and they don’t seem to want us to use them. Isn’t that what they are intended for? That’s what I thought, but I was told that home health care was a program I had never heard of. I could actually get a doctor to come to my house.

The social worker said, “It’s usually for people who are wheel-chair bound or who can’t hardly get around and have no wife to drive them.”

cathyI almost burst a blood vessel in my head when I heard this comment! She has no idea how much it hurts my wife, who also suffers from sciatica and hip trouble, along with some mental health issues, and anxiety. How dare her just assume that I am not a candidate when I can barely walk, I have been hospitalized four times in this year alone. I spent New Years to Easter in a damn hospital. I am completely fed up with the Florida V.A.

 

 

A Day in the Life


Gulf Illness Veterans (G.I.V) at War Still

pain6It’s not easy to bare your soul and let complete strangers into your life. I realize that this blog isn’t terribly popular, but this is on here as long as I don’t delete it indefinitely and anyone can view it. That being said, I want to let you into my life and what I am going through. I also want to tell you that I know that some of you may read this and think I am whining, looking for attention, or maybe trying to get sympathy. That is definitely not the case. I cannot emphasize this enough. This blog has never been about me. I’d be lying if I said I don’t want help, but I am not a selfish person and I would like to think that my creative gifts are being used to help others, not just myself. If my blog can in any way help even…

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Beware of Pain Clinics


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About a year ago I went to the Emergency Room of a VA Hospital in Florida where I live. I was having severe pain in my sciatica. Despite the fact that I was taking Morphine or MS Contin and Oxycodone I was still in pain. The doctor did an MRI on me and they basically said there was nothing that could be done. They suggested I go to the Pain Clinic to ask about hydrotherapy, acupuncture, and other means of therapy. This sounded good so I said I would talk to my doctor. They also said I should be on some sort of muscle relaxer. I then went to my doctor and told her everything and she asked why I need a muscle relaxer (a non-narcotic) and made it sound like I was a drug addict. She agreed to send me to the Pain Clinic. What I didn’t know was that she had suggested I be taken off all narcotics to get the muscle relaxer.
When I first went into the Pain Clinic I was greeted by a doctor with broken english and a very young doctor who was supposed to be a pharmacist. I was confused by this because I thought I was there to talk about therapy, not my medicine.
Right away the focus was all on my pain medication. He said they were going to ween me off all narcotics because several veterans have overdosed. I said that I take them the way I am supposed to and that I have a family to live for. He then said that it was because of my sleep apnea. He maintained that I could fall asleep and not wake up. I said that I thought that was what my CPAP machine was for.
pillsNext he told me that I should stop taking Prednisone because that’s most likely the root of all my problems. This was the funniest excuse to me. I was prescribed Prednisone due to a condition called PMR that causes severe inflammations and pain in my left shoulder. I couldn’t believe what I was hearing. I naturally thought this guy was a quack so I did some research on him. He is not even a pain specialist, but an internal medicine doctor.
When I stated my objections over several more visits this doctor got real defensive about his service. He is an officer in the National Guard and has been to Iraq twice. I find that very commendable, but irrelevant. I told him it didn’t matter, but he continued to sing his praises and try to impress me with his war record. I could care less. He tried to say it was nothing personal, but it’s very personal. He has ruined my life by taking away the one thing that helps me hold on and get through the day. I’d say that it’s personal when it affects your sleep, your relationships, and your attitude.
painclinic3I then saw this doctor’s supervisor and he was a big jerk. He examined me and was very nice at first and then proceeded to call me fat, lazy, and uneducated. I was really insulted and wanted to smack him. I almost did. I had to get up and leave. I tried to go to a patient advocated, but anyone who has tried this route knows that they don’t get involved in this kind of thing and always take the side of the doctor. I also tried going to my Senator and that was no help. He wrote to the Administrator who then sided with the doc.
So, basically now I have been without pain meds for 8 months. In some ways I do like the fact that my head is more clear, but there are moments where I want to just scream and pull my hair out. Nights are the worst for me. I smoke cigarettes and wonder why I can’t be normal like everyone else. My wife is sound asleep, there’s absolutely nothing to do and nothing seems to help. I really have tried everything and there’s nothing that works. As time goes on unfortunately you learn to deal with it because you have to, but I really don’t think I should. I did my time and I didn’t ask for this. I think it should be up to the VA to fix this problem. I warn all of you to stay away from these Pain Clinics unless you have Cancer they will not help you. I am now red flagged and can’t get anything without an override. I am miserable most of the time and do things like write here to keep my mind off of the pain. Also, if you live in Florida I would especially keep an eye on your pain meds because they are really cracking down here on the label of the “drug capital of the world.” or the pill-mill state. Now it’s the “no pills at all” state. My wife is disabled also and she can’t get anything for pain either from a regular doctor. They tell her “tough luck.”

Alternative Medicine & Therapy


I am not a doctor, nor do I pretend to give medical advice so anything written below should be considered by you and your medical prokratom leavesvider. I am only stating what has or has not worked for me. I am listing many different options for anyone looking to try something new. I also have included several links for more information on the links page. Here you can find many useful links to websites and books and more.

kratom powderKratom: I have tried Kratom recently and found that the powder in tea or a hot drink like coffee works well to relax my muscles and my back. I use about a teaspoon and a half in my cup. There are different blends and strains of Kratom for different ailments such as anxiety, headaches, energy, and more. Do some research. For now this is legal and I buy mine at a smoke shop, but it can be bought online as well. I have not had any harmful side effe

cts from this, but check with your doctor if you have any concerns.

Marijuana: I have used marijuana if I can afford it. I’m not alone as many Americans are finally marijuanarealizing the benefits of marijuana medically. For years many Cancer patients have used to get through chemotherapy and to relax aching muscles and more. It can also relax you and aid in sleeping more regularly. I am not encouraging anyone to break the law at all. If you are lucky enough to live in a state where it is legal you really have a lot of benefits available in edible cannabis and better strains of this plant which holds so many possibilities of treatment. Personally, I don’t drink alcohol as it makes me very mean and for some reason I used to like to drive while drunk often so marijuana to me is much better than drinking as all I want to do is relax and watch a good movie instead of raising hell and getting into legal trouble.

Charlotte’s Web: This is a cannabinoid oil that can be smoked to relax muscles and has been effective for the use in children or those who benefit from the use of THC pain relieving qualities, but doesn’t give the euphoric feeling. It is legal in all states now.

pain3Chiropractor: I have used one of these and it didn’t help much for me, however I have friends who swear by their chiropractor. They work on your muscles and spine mostly to prevent further damage. They also help with joint pain. If you have a chance you might want to just meet with someone at the office of a chiropractor and see if you can discuss how this could benefit you.

Integrative Medicine: This type of treatment combines mainstream medicine with alternative remedies. It seems that some doctors feel compelled to find out about certain treatments that are just simply ridiculous and then those that may have acutal benefits toward the patient. This type of medicine also emphasizes a close relationship between the medical professional and his or her patient.

I have benefited from some other things that may or not be labeled. I know that some of you may not believe in God or practice religion for whatever reason, but I personally have found a lot of help from my spiritualism. I don’t think I’m extremely religious and I don’t go to church because I don’t care for crowds and when I have been involved with a church they seem to be hypocrites to me, but of course not everyone is like that. I just prefer to worship in my own way. I also enjoy just trying to improve myself in any way possible whether it be learning to speak French, reading a self-help book, or looking at a bible. I also have enjoyed some books by authors listed below that are about spiritualism or self-help. I also enjoy trying to meditate sometimes. I’m not really a meditation type of guy. Being a big, clumsy oaf looks funny when your wife walks in on you repeating “OHHHMMM.” I was really embarrassed, but my wife knows I’m certifiable most of the time anyway! But if you focus your breathing and your mind to a silent place it can do wonders. I have managed to block out hours of pain with this type of behavior and with the help of music. I usually put on some Neil Young or similar softer rock that I can sleep to. The Eagles are my favorite to chill. All the good times associated with my favorite music is the key for me. I dream of when I was younger and healthier and I also imagine that some day I  will be healthy again.

dogs3Hopefully we can all agree that there is a force in this universe that seems to somehow regulate karma and things like that. So if you can get behind a “higher power” you might want to try to work on being open to new things. Just try a book on self-help even if you swore off them forever years ago. Maybe Tony Robbins pissed you off as much as he did me. I just think there are some good books that everyone should read. I will list the ones I can think of below with some links. There are also fiction that deals with spiritual type plots. One of my favorite is:

I also recommend trying to lose all anger you may carry around. Think about your frustration and how it is ruining your life. You may also want to try to let go of all guilt, resentment, and any other negative feelings that will sure bring you down and affect your health. It especially doesn’t pay to just lose your temper. Believe me I have had to learn the hard way. Next time you feel yourself wanting to explode just take a walk, listen to music or anything to get your head straight. One thing that always freaks out a bully or somebody who is acting strangely is to be super kind back to them. They are caught off guard and may even start treating you with more respect. Smile as much as you can and you may find your body responds with a happy feeling. I know that this stuff may sound a little strange to some of you, but if you spend as much time as I do trying to deal with chronic pain you will try anything! Good luck, and I hope that you find a good place to start dealing with getting your life back on track as much as that’s possible.

Visit the links page for links to great books on all kinds of alternative medicine, herbal remedies, spiritual and self-help type books.

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The Burn Pit Registry


burnpitRecently the president approved a new burn pit registry for veterans who were exposed to burn pit fumes in Iraq and Afghanistan. This is in order to keep track of the veterans who were around the pits and to notify them of new treatments and monitor their existing health problems and health history. This is a long over-due step in the right direction. The provision was strongly supported by the Disabled American Veterans and other veteran’s organizations and is part of the Dignified Burial and Other Veterans’ Benefits Improvement Act. Many veterans lived and worked in and amongst burn areas and it was painfully obvious that health risks were there, but as always following orders is what the military members do. For the troops deployed in support of contingency operations in a location where a burn pit was used are encouraged to register as well.
The National Adjutant of the DAV said, “This is a long overdue step in the right direction.” This same legislation also ensures the VA provide a casket or urn for veterans with no known next of kin and sets aside funds for a military cemetery in the Philippines.
burnpit2In addition the president also signed legislation that will give veterans access to better resources to achieve a quality education. It is called the Improving Transparency of Education Opportunites for Veterans Act.
For more information about how to register for the burn pit registry:
http://www.publichealth.va.gov/exposures/burnpits/action-plan.asp

As of this post I don’t believe the registry is ready yet, but the VA is working on it and if you have questions you can contact your medical facilities’ Environmental Hazards Coordinator.

The Potential Causes of Gulf War Illness


new1It seems funny that after over twenty years we still have no cause. There seems to be no interest by the media other than back page stories in newspapers and no television that I have seen or heard of. Most of what I could find for the causes of Gulf War Illness is the same today as it was twenty years ago. It’s becoming evident to me that the only people who really care about Gulf War Illness are those of us who have it. I guess we are lucky that it’s not the same for Cancer, Leukemia, Aids or other diseases that affect far more people in our society. Then again, if we really cared we would find a cure and stop letting big pharmaceutical companies run the country. Right now there are lobbyists lurking in the halls of congress waiting to trade favors in exchange for getting another big drug approved so that when you get sick, and god help you if you do, they can give you a bunch of pills instead of trying to find a cure or a cause for what is wrong with you.

The following factors may have interacted to bring about specific symptoms in veterans. Obviously, the combinations of factors differ with individuals, hence it is likely that there is not one single explanation of the whole spectrum of symptoms. However, the following main categories are candidates for causal relationships with illnesses reported by veterans:

Administration of three vaccines intended as protection against nerve and biological warfare agents. These were:
gw3Pyridostigmine, normally prescribed for myasthenia gravis and known to have serious side effects, especially when the person taking it is exposed to heat. It is also known that exposure to pesticides and insecticides (Baygon, Diazinon and Sevin) should be avoided when taking pyridostigmine because they can accentuate its toxicity. Some women who took this drug during pregnancy and have breast-fed infants have seen side effects in their child.
Botulinum Pentavalent, an unproven vaccine intended to counteract botulism. It is unlicensed in the United States.
Anthrax, to protect against the disease anthrax. This was apparently selectively administered to troops during the war, and women receiving it were warned not to have children for three or four years.
du1Depleted uranium was used for the first time in this war. It was incorporated into tank armor, missile and aircraft counterweights and navigational devices, and in tank, anti-aircraft and anti-personnel artillery. The scientific information on this deadly chemical has been reported in “Radium Osteitis With Osteogenic Sarcoma: The Chronology and Natural History of Fatal Cases” by Dr. William D. Sharpe, Bulletin of the New York Academy of Medicine, Vol. 47, No. 9 (September 1971). There was no excuse for this human experimentation because the effects of this exposure were known.
Smoke and chemical pollutants released by the continuous oil- well fires. Levels of soot, carbon monoxide and ozone have been studied by an Environmental Protection Agency Task Force. The National Toxics Campaign, Boston, Massachusetts, found five different toxic hydrocarbon products in the smoke (1,4-dichlorobenzine, 1,2-dichlorobenzene, diethyl phthalate, dimethyl phthalate and naphthalene), any one of which could induce serious health effects.
Old World leishmaniasis, a parasitic disease transmitted by the bite of many species of sand fly indigenous to the region. Non-indigenous people who enter an infected area are known to be more seriously affected by this parasite than the inhabitants. If left undiagnosed, and therefore untreated, it can be fatal. Diagnosis requires bone and spleen biopsy, and the disease can have a three-year incubation period without causing symptoms. It can be transmitted by blood transfusion, and transmitted by a woman to her unborn child. Leishmaniasis was reported as widespread in Iraq and Saudi Arabia. This disease is thought to be responsible for the Pentagon ban, November 1991, against blood donations from Gulf War veterans. This ban was lifted, for unknown reasons, on January 11, 1993.
du5Pesticides and insecticides were used extensively throughout the war to protect against pestilence. It is known that large quantities of DDT, malathion, fenitrorthion, propuxur, deltamethrin and permethrin were used. They are all toxic nerve agents, and many are suspected carcinogens and mutagens.
Destruction by allies of Iraqi chemical, nerve and biological warfare weapons resulting in widespread distribution of these toxins in the environment. This problem has now been, at least in part, documented by the U.S. Department of Defense. They are focusing on this potential cause as if it were the only candidate cause.
Depleted-Uranium-Mortar (1)The electromagnetic environment which permeated the battlefield during the war. Veterans were exposed to a broad spectrum of electromagnetic radiation created by electricity generated to support the high-tech instruments, thousands of radios and radar devices in use. This intense electromagnetic field causes both thermal and non-thermal effects, and potentially interacts with the other hazardous exposures and stresses of the battlefield. Electromagnetic radiation can alter the production of hormones (neurotransmitters), interact with cell membranes, increase calcium ion flow, stimulate protein kinase in lymphocytes, suppress the immune system, affect melatonin production required to control the “body clock,” and cause changes in the blood-brain barrier.

Proof of Gulf War Illness with Not Much Media Attention


English: A British Challenger 1 main battle ta...

You would think that the recent findings by a Georgetown University Medical Center report proving Gulf War Illness is real would make a great headline. Perhaps it’s been too long for younger demographic of news media outlets to run with. Is it just old news and no longer worth reporting? I wanted to find out, but my calls and e-mails did not get much response. Most journalists I contacted at the New York Times, the Chicago Tribune, NBC News, CNN and FOX News did not even respond. If they did it was mostly just a form type response and it was clear they did not read my question or did not wish to respond.

If you have heard the news the report shows that scans of brain matter in two regions of the brain associated with pain regulation when tested on Gulf War veterans show a loss. This affects cognitive deficits, autonomic dysfunction, severe fatigue and chronic widespread pain that is implicates the central nervous system. You would think that maybe the VA might get the word out to those of us who are Gulf War veterans, but that hasn’t happened either. Perhaps my doctor would be concerned for my health and would wish to run more tests on me, but that definately did not happen as she does not want to treat me for it. When I asked about treatment for Gulf War illness she told me to talk to my veteran’s service officer. This is the fourth doctor to tell me this.

One of my major concerns is that the test also showed that any type of physical or mental effort considerably worsens symptoms. This means that the more I try to do light stretching exercises and walking, swimming or other daily activities along with things such as typing this blog make me worse. I guess that’s not really a surprise to me, but it is very scary and it makes me wonder how much worse it will get over the years. I want all of you reading this who have Gulf War Illness or have a friend or loved one with it to discuss this and find out how it is that we are not getting all the benefits that we deserve for this debilitating condition. We have to do something now before it is too late. We are at a much higher risk for Cancer and ALS and as we age there is no telling how much we can get. I urge you to take action now. Contact your congressman and insist they do more to push for your rights and benefits.

One of the scientists who was involved in the study stated, “Our findings help explain and validate what veterans have long said about their illness.”

English: An American serviceman examines an Ir...

Another doctor, Dr. White said “We don’t know the cause of these differences in the veterans’ brain volumes, but the hypothesis is that they are related to exposure to hazardous substances during the first Gulf War. Many troops were exposed to hazardous substances such as pesticides, and other studies have shown that exposures to these substances affect the central nervous system.”

As test results and studies from major accredited universities, government agencies and others continue to be revealed nothing more seemed to be done. In fact, I receive updates from many governmental agencies daily via e-mail and I haven’t seen a thing about this study. I found this on my own and may not have found it had it not been for a routing google search for this blog. It is a very advanced study and shows the most conclusive and revealing results so far in the history of this illness, yet we are still at square one. I fear that if we do not do something to stop this the trend will continue for generations to come.

Discuss & Raise Awareness for Gulf War Illness

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