Fighting the Pain and the V.A.

  This has been a strange year for me so far. In some ways it was really great, but again my health has stopped me from enjoying life the way I want to. My daughter gave birth to my grandson, Colton James, two months ago and in April I published my first book. You would think I would be really happy, and I am trying, but pain is a real big problem and I keep having to go to the hospital.

Since I moved to Florida at the end of 2012 I have noticed that the V.A. here is just not really that together. I had my share of problems everywhere I have lived, but Florida is just really screwed up for the most part. I seem to have to fight with clerks, nurses, and doctors – sometimes on a daily basis. I should not have to do this. I don’t have a lot of fight left in me.

Today is a scary day. I am fighting to breath and fighting severe pain from my neck to my feet. I just got a catheter taken out, but now I am again having to push hard to urinate and I seem to have to go every five minutes. I don’t sleep much these days; maybe three or four hours if I’m lucky. After a few days of this I pass out for about six hours and then I wake up with chest pain and trouble catching my breath.

In case you were wondering where I have been and why I haven’t been writing here I think the last paragraph sums it up. I also have been in the hospital for various serious issues six times this year. I just don’t really have a lot left to say sometimes. It’s hard to write when you feel like you’re dying.

I can’t help but wonder if this is maybe what the VA wants. I am a problem child to them. Every time I go to a doctor they are like, “Okay, tell me what your priorities are – I only have so much time.”

I understand that other veterans are waiting and I don’t want to take up too much time, but this last time I asked for a longer appointment and the clerk assured me that the doc would take as long as I needed. Of course, he was wrong. So it would be much easier if I passed on than to take the time to actually deal with me. I also have a claim for service-connection so I am a big problem to them. They don’t want to pay me what I deserve and what my family does for sure because they are the ones who care for me and watch my back, they deserve it. My time is short, I know that, but they deserve something for taking care of me daily. My wife has health issues too, but yet she does everything for me and I am helpless to do anything about that.

This was taken on a day when I was having severe pain and nothing seemed to work. But I made it and I am just documenting it – not looking for anyone’s pity. Do not pity me – just ask your congressman, your physicians, the VA or whoever is supposed to be working on trying to help vets with symptoms of Gulf War Illness. And I also want to say that I am not complaining. I am merely trying to make a point. I talk with so many vets that say they don’t know where to turn and I am just trying to use myself as an example of a vet with the same problems. I have been told by certain individuals that I would rather not name because I don’t want to implicate any one organization. Let’s just say that certain people working at vet orgs have conflicting views with the way things are supposed to be according to the mandates or regulations or press blurbs or whatever you want to call them – the sec of the VA says that he wants to help us and that’s great – but then I am told by certain people that it would take years to help me and that I am looking at conspiracy stuff online and getting excited about that. I have not dilusions about what happened to me. I was obviously exposed to something that made me unable to be employed at the age of 38. I would say that is a good reason to be inquiring why. I have a letter from the VA that states that they do take responsibility for the rare condition I have called Polymyalgia Rhematica or PMR. (look up on wikipedia) if you don’t know what it is – it basically makes my joints hurt all the time especially when it is raining or snowing etc.. and on top of that I have arthritis, and fibromyalgia. I just want to be seen by specialists. I have an appt with a new doc next week and I am hopeful that I can be sent to places like Wash DC or JAX, Fl = there are supposed to be testing places for gulf war illness there. I took the test for GWI and then they wanted me to take it again for some reason. I can’t afford to go to all these appt’s. on the pension I get. The gas is too expensive and now with sequestration I can’t get my travel pay! But I am trying to remain positive.Thanks for all the support and I know that you guys are going through it too – I am thinking of you first – I want you to know that. Of course, not all the time, this day I certainly wasnt, but my hope is that this blog might inspire more vets to try and get the help they need. More on my next post! God bless…

I recently tried to receive home health care and I got called by a nurse practitioner who had a problem with my request. She said I was too young. I agree, I said, but I didn’t choose to be sick. I have so many issues that I have to carry around a list of meds and conditions. She was so rude. She asked me a series of questions about whether or not I was in diapers and things like that. I think she missed her calling as a drill sergeant. She kept harping on my age and I have heard it before. Kids get cancer – why can’t I have gulf war illness? I was, after all, in the gulf war! If you go to the website for home health care at the Orlando VA they state that age does not matter. I guess she didn’t get the memo. Typical.

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Proof of Gulf War Illness with Not Much Media Attention

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.”

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.

Veterans | Congressman Lamar Smith

“Psychological Interventions That Effectively Ameliorate The Symptoms Of PTSD Exist But Are Not Widely Used”

Blind Veterans UK – No One Alone campaign

British Geriatrics Society

Blind Veterans UK provide their members with practical and emotional support, helping them to recover their independence and discover a life beyond sight loss.

Last autumn Blind Veterans UK (formerly St Dunstan’s) launched the No One Alone campaign, which aims to raise awareness amongst the general public that there are more than 68,000 National Service and Armed Forces veterans in the UK who are currently battling blindness and severe sight problems.

These are people that Blind Veterans UK can help in very practical and supportive ways that will enable them to start to live a more independent life again, and relieve pressure on their friends and families as well as on overstretched health resources.  Many people are referred to Blind Veterans UK through a healthcare professional, such as doctors, nurses, carers, or opticians. So if you are currently looking after or caring for a blinded or partially-sighted older person, or if you…

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Depression

vabenefitawareness

Depression is a very common problem. It affects individuals differently, affecting their mood, actions, body and thoughts. It impacts daily life and functioning. Depression is not a sign of weakness and says nothing about your character. It affects all walks of life and no one is immune to it. There are many life events that can cause depression from loss of your job, loss of a family member or friend, stressful events, seasonal blues, medical issues, or change in habit; such as when a person quits smoking. There are a lot of people who suffer from depression and many people are going through the same situations in life as you are, you are not alone.

Many veterans suffer from depression; it is more common in woman than men. Then again, women are more likely to get help for their mental health then men are and men are more likely than…

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HARTMAN: World War II veteran learns to read

Legion Claims “Man Has Conquered Gulf War Syndrome”

Read this story and then come back to my post and see why this really pisses me off!

http://www.legion.org/washingtonconference/214028/has-man-conquered-gulf-war-

I’m really happy that the “Great Conqueror” has no more tummy aches, but the rest of us in the real world have the real Gulf War Syndrome! It doesn’t have a darn thing to do with having a bad meal in Iraq for most of us. In fact if you read the Federal Benefits Handbook for the VA it does not even come up. I don’t know about you, but I was warned about not eating the local cuisine. Anyway, this is all about how he ate a bad meal and then figured out he had some rare stomach virus.
Now, I’m just going by what is in the story, maybe there’s more to it, but according to the story am I wrong in saying:
What on earth does that have to do with GULF WAR SYNDROME?? And thank god there’s a cure now – I guess I can go to the VA and get it? Oh, what’s that, NO? Why not??…. I’m confused!

I believe the editors of this article and American Legion really were reaching when they talked about “conquering” and “cure” for gulf war syndrome knowing that those two words would come up in searches for those of us who are desperate for information about why we are all sick with things that have nothing to do with what this man has according to the article. I feel that the editors and the Legion should retract this headline and make a statement on behalf of the editor’s mistake in trying to pull readership with a cheap shot. I was an editor and a publisher for several years and I know how it works and I never stooped this low. They have a responsibility to their readers, veterans and members to publish the facts and use journalism for the good of this audience, not to sell magazines and get hits on the site. I am just going out on the limb here and I really hope I’m wrong about him “curing the disease” but I bet we never hear another word about this guy. This will just fade away just like the rest because all he did was for his own self-interest not for the good of us all in my opinion. But, hey, I’m not a Major in the Army and so I guess my opinion doesn’t matter.

I wonder if anyone at the legion has read the Federal Benefits VA Regulations on what the definition of Gulf War Illness is. Fibromyalgia, respiratory Disorders, Chronic Fatigue, Mental Disorders, Sleep Disorders etc.. I didn’t hear anything about that from him. Just that he had some bad chow. Wow, and then he figured how to cure himself and now he’s a big hero? Seems like he should either get a reward or a reprimand. You decide.

Vets Coming Home Today Showing Signs of Gulf War Syndrome

 A one-size-fits-all approach to treating U.S. veterans with Gulf War Syndrome does not work, and therapy needs to be tailored to meet each patient’s needs, according to a new Institute of Medicine report released Wednesday.

The document — written as part of the institute’s congressionally mandated Gulf War and Health series — evaluates the various treatments for Gulf War Syndrome in veterans of the 1991 conflict and recommends best approaches to managing their care.

The official name for Gulf War Syndrome is chronic multisystem illness (CMI), which is defined as having symptoms in at least two of six categories — fatigue, mood and cognition (thinking ability and memory), musculoskeletal, gastrointestinal, respiratory and neurologic — for at least six months.

The condition affects at least one-third of veterans of the 1991 Persian Gulf War. Similar symptoms have been reported in many military personnel who served in the more recent wars in Iraq and Afghanistan.

“Based on the voluminous evidence we reviewed, our committee cannot recommend using one universal therapy to manage the health of veterans with chronic multi-symptom illness, and we reject a one-size-fits-all treatment approach,” committee chairman Bernard Rosof, chairman of the board of directors at Huntington Hospital, in Huntington, N.Y., said in an institute news release. “Instead, we endorse individualized health care management plans as the best approach for treating this very real, highly diverse condition.”

The report listed many treatment approaches that might help these veterans, including certain antidepressant drugs and cognitive behavioral therapy. Other possibilities mentioned for further research include biofeedback, aerobic exercise and acupuncture.

The U.S. Department of Veterans Affairs should adopt a new strategy of creating “CMI champions” to help its health care providers better assist Gulf War Syndrome patients, who often have complex symptoms and needs, the report said.

To improve the government’s ability to identify veterans with Gulf War Syndrome, patients’ electronic medical records should prompt health care providers to ask patients about possible symptoms, the report recommended.

In addition, veterans should undergo a comprehensive health examination immediately after they leave active duty, and the results of these exams should be available to health care providers both within and outside the VA health system to ensure continuity of care.

The cause or causes of Gulf War Syndrome will never fully be determined, the report said, but this does not mean that veterans’ reports of symptoms are not legitimate.

SOURCE: Institute of Medicine, news release, Jan. 23, 2013

Researchers Still Actively Examining Gulf War Syndrome