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Subj: re: exchange post
Date: 1/26/99
From: Izz9850
hi,
I would like to take a moment to thank all that have worked so hard in creating and keeping up this page.
Second I would like to add a bit of information to all this about
GWS. I am the wife of A DS Vet, and there is also something else that I
believe
is adding to our loved ones' illnesses.
How many of them were taking the PSB? Remember that this "drug" was supposed to be an antidote?
Well, I find this hard to believe. If it were an antidote, then why was it distributed to only select personnel?
Why were our men and women FORCED to take it during formations,
every 8 hours, and why were they checked, basically INSPECTED
to make sure
that the pills were taken?
It was not only what our men/women came in contact with, but also what they were forced to injest.
I have had some help from a wonderful friend that I met on here, a
VietName vet, and there IS a place that will give better answers to a lot
of
the questions, and they won't treat you as a nut, or that you are imagining
things,
Get a hold of someone from a VET CENTER. They are funded by the
VA, but the red tape, and all the garbage is limited. They honestly
believe
that there is a real problem. And they will help in whatever way they can.
My husband suffers from the form of GSB that is IDENTICAL to nerve
agent poisoning. All of the symptoms, along with the rash, it seems
that
every internal organ is effected.
He also has a severe problem with any type of pesticide contact.
We can't let him walk in the grass, until after a rain has diluted the
substance,
he also cannot be outside when it is being sprayed, or he becomes
violently ill.
THere are many things that they were exposed to, but please also
remember to tell whoever you have them seeing, if they took the PSB,
which
is ( please excuse the spelling) PyraStigmaBromide. ( something like that)
This is not what they were told it was. anyone wishing to
talk, give me an email izz9850@aol.com sorry if I sounded like I was on the
proverbial soap box, but I
too, am scared, furious, betrayed, as well as a multitude of other emotions.
And thanks so much to DSMOM, for all the hard work.
and to every vet, THANK YOU AND WELCOME HOME !!!!!!!!!!!!
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Subj: PTSD
Date: 11/22/98
From: cnrsturgis@mpinet.net
Dear DStorm Mom:
I have spent the last two hours just trying to hold back the tears as I'm reading letters people have sent you--finally I have found a site that really relates...others who are experiencing the same things we are...it's so good to finally not feel alone in all this. My husband was diagnosed with PTSD (& eventually medically retired) after being badly hurt in the Khobar Towers terrorist attack in Saudi Arabia in June of 1996. He also served in Saudi during D/S/S. We had been married just a little over a year when he was sent TDY to Saudi--and as far as I'm concerned the man I married died in that bombing...the man that came home to me was alive at least, but so hollow and empty inside. our lives were irrevocably changed...nothing has been the same. Even now, going on 2 & 1/2 years later, we still deal with things we can't explain--there are no rule books...no guidelines...every day it's a different battle. some days are good, some i don't even know where my husband is he's so far away. we are wading through the red tape of the VA process to get him a rating, but often get so frustrated we'd like to just give up. it seems that if you don't know the right questions to ask, the information won't be offered. it's all so confusing. not to mention the financial aspects of all of this--we were forced into a bankruptcy because of his retirement, and struggle constantly with living on the edge...if a major catastrophy were to happen, we'd be on the streets. it's hard to put into words what this has done to me as well--sometimes, although i love my husband, it gets to be just too much for me. i worry constantly that our marriage won't survive this...there's got to be someone out there going through this too...can you help??? i'd appreciate any comments or just a chance to talk with someone...anyone who has "been there...." thanks.
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3/25/98
A Canadian Gulf War
Spouse shares her story
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Subj: Desert Storm
Date: 98-03-07
From:
mldunn@bellsouth.net (michael l. dunn)
Hi!
It is a wonderful thing you are doing with this Page. I am the
wife of a Gulf War vet who is suffering from unexplained illness following his
return from the Gulf. Despite extensive military and civilian evaluations,
nothing has been found to explain his deterioration. All I know is that this is
not the same healthy man who left for the war. All the military wants to say is
that he has PTSD.
Being in the medical field myself, I am fully aware
that he does not fit the criteria for PTSD. Being his wife, I see, daily, his
struggle to continue to function despite debilitating headaches, tremors,
myalgias, arthralgies, extreme fatigue. Yesterday, my middle child, born exactly
two months before he left for the Gulf, asked her father why his right hand
shakes all the time. I didn't realize that she had noticed.
Oh, well, enough of my concerns. I am looking forward to following the Gulf War Homepages. It seems that those directly affected are going to have to discover the cause, treatment, cure for this constellation of illnesses ourselves. Heaven knows, the DoD, et al, don't seem to want to.
Thank you for allowing me an outlet. I can't really say these things to friends who have no experience with the problem.
I wish the best to all who are going through this terrible episode.
Sempre Fi!!!
Peace,
Donna
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Subj: A spouse is a soldier too
Date: 97-04-19
From:
tsmith@valley-internet.net
I am the wife of a ten year Marine that has been thru the VA
process, CCEP only to be diagnosed terminal in Nov,94. We have just won a 5 year
battle for service connerction and compensation. This was a hard battle won only
with media and political help. He is now receiving some help but as we learned
in Los Angeles in 94, there is not much they can do
for him.
I miss the man that I fell in love with AFTER the war. He was a
powerlifter and weighed
264lbs. Today he weighed in at 195lbs. His illnesses
had changed our lifestyle. My time is
spent as a Public Affairs Officer for
the Idaho Chapter of the Desert Storm Justice Foundation in Idaho. I use the net
daily to research as much as I can about his diagnosed/undiagnosed problems.
Life has changed so much.
But we still have each other and a post war baby that is pretty health. Keep faith in each other and try to have as much patience as possible with your spouse. Don't give up the fight!
Semper Fi!
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Subj: Hello
Date: 97-03-25
From: LETDOG
My name is Sharon. I met my husband 6 years ago next month when he came back from Desert Storm. You see, he was my pen-pal from the war. We were married 4 months after we met for the first time.
A few years ago, my husband and I noticed that he was suffering from every symptom of DS Syndrome in the book. He has gone to the VA for the physical for this horrible syndrome, and is registered in the registry.
Recently, my husbands headaches have become increasingly painful and intense. An MRI was done of his brain, and an abnormality was found. One of the possibilities of this abnormality is something called demyelinating process which is the destruction or deterioration of the nerve lining. My husband knows his unit was hit with gas. Of course the Pentagon denies, and that's a whole other story. My question and purpose for e-mailing you is this: DO YOU KNOW OF ANY OTHER DESERT STORM VETS SUFFERING FROM THIS? We go to see a neurologist April 4th, and thought some information regarding studies might be helpful. We're at a loss. My husband is only 28, I'm only 26. And we're scared to death.
Please help if you can. Please help me get the word out about my question. I need some people to respond so that I can go into the doctor's office with some information instead of being at their mercy to find and provide it.
I thank you for your time.
Sharon
E-mail: LETDOG@aol.com
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Subj: Looking for answers, info.
Date: 97-03-25 01:43:04
EST
From: LancezGrl
My husband is currently active duty army. He served in Desert Shield/Desert Storm from 8-90 through 4-91 with the 82nd ABN Div. out of Ft. Bragg N.C. He was attached to B Company 1/505. His Platoon Sgt. at the time was a man by the name of Sgt. Kelly. In November 1996 my husband was notified by DoD that his unit (mentioned above) was in Khamisiyah Iraq March 1991-April 1991. I am curious to know if anyone from who served with my husband has suffered from any aftereffects from the Gulf. My husband does not have the headaches, muscle aches, joint pain, memory loss, etc. that other vets seem to be suffering from. He does, however, suffer from mild fatigue. Since November 1996 my husband has been seen by many doctors (military & civilian) in a military treatment facility near where he is stationed. So far the tests that have been run show nothing is wrong; i.e. blood tests appear to be normal, EKG is normal, the results from wearing a Holter Monitor for 24 hours also came back normal. I would like to hear from some of the other Airborne soldiers who served with my husband in the gulf or even from their wives. There was a young man who served with my husband who was a son of an Illinois Congressman. In fact, there is an article in the People Magazine featuring this young man (People mag. is a weekly publication - I believe the article came out sometime in Oct. 90.). I believe his name was Jerry Costello. He and my husband were friends and I believe that he got out of the Army after the war. Please e-mail me at: LancezGrl@aol.com if any of the names mentioned in this letter are familiar and/or you served w/ a young man with the last name of "Trevathan" during the Persian Gulf War. Thank you.
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01/05/97
Angry, scared, you name it!
I have sat and thought about all of this over the holidays. I had a woman tell me the weekend before Christmas that we might need to get our affairs in order. That's a chilling thought. One year and two months ago life was very normal for us. I mean my husband was having some of the very minor problems, but it was things like an aggravating rash or some headaches. Our son that was born after the war has some of the same rash, and our daughter was born with a heart murmur. These are all things that you just survive though. Well, as I said, all things changed one year and two months ago. My husband and I were having lunch together when he all of a sudden announced that I needed to take him to an emergency room. He LOOKED normal, but within 20 minutes he didn't know his name, where he lived, or anything. This was the beginning. We have just been dealing with things one day at the time when his father, and brother mentioned to us that alot of other vets were having similar problems. That's when I started this fact finding mission and at first I just got real scared. Then, the more I learned, the more mad I got. I was watching a Montel Williams show and heard one of the Senators say that on the hill we were just thought of as malingerers. That bumped the anger up to a new level to say the least. I could care less about the millitary, the VA, and frankly the government, but I WANT MY HUSBAND BACK!!!!! I love my husband with all my heart and always will, but the man that I am married to now is completely different from the one I married. Actually, to be more to the point, he is completely different than he was one year and two months ago. We have been through the Veteran's affairs guy (the one that's supposed to be on your side. HAHAHAHAHAHAHAHA!!!!!) and he just doesn't seem to care unless you are a Vietnam vet. Let me say at this point that I have the utmost respect for any man that has ever donned a uniform. I realize that some of them are not the most savory people, but for some, that was mainly due to the military. The military makes warriors, not respectable citizens. I would never want to take anything away from any veteran at all. I just want them to see and realize that our fight is a valid one. There are a lot of Vietnam Vets here that help because they are determined not to let the Gulf Vets be treated the same way that they were, but there are some that think that they got shafted by the government so screw everyone else. But as I was saying before I got off on this tangent: I don't feel like fighting the VA, the Government, and the guys that are supposed to be on our side too. I have found a group called the Veteran's Consolidated Rights Association and the man that I have spoken with seems to be extremely helpful. He says he can file our claim, which the VA patient advocate told me to file. I really would like to hear from anyone that has heard of this organization. My grandfather told me to be careful about private organizations that say they can help. I just want them to tell the men what they were exposed to so we can tell our doctors and treat them. Who cares about money!!!!!! It's my husband I want back not thier money. Do they think that money will keep me warm and safe at night? Will thier money listen when I have a problem? Will thier money explain to my children why I am so stressed out that I snap at them over the smallest thing? The answer is a resounding NO! I certainly do not wish this "syndrome" on anyone. What I wish is that those stuffed shirts up on capital hill including our president would know what it was like just one 24 hour period to be us, the spouses. I want them to be scared. I want them to be afraid that thier spouse is going to die and for what??? So they could put one more dollar in thier pocket. I want them to know what it's like to not know if their spouse is going to walk through the door and go off the deep end because the kids are playing a little loud or left something in the driveway or just because you said "Did you have a nice day at work?" Let them deal with this just one day and see if money woudl make it all better.
Sorry. I think I did it again, the soap box thing.
I hope that all have a happy New Year and I hope it brings us all some good news!
S. B.
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01/26/66
DStormMom,
Well you know my story pretty well, but I thought I'd share
it with others.
No answers - but understanding.
My brother was an MP in Hafar al Batin at an EPW Camp. He
experienced SCUD attacks
and chem alarms. In April 1991 he was hospitalized
- unconcious three days and in the
hospital for two weeks. Then light duty
for the remainder of his stay. He was undiagnosed
during his stay - but had
severe neck spasms and also could not walk.
He lived with me upon his return for three months. Was still ill
with what we called the
"Saudi flu". Of course, it has never gone away -
just more symptoms added over the years.
He has recieved no VA compensation
(on appeal for the last three years) and the medical treatment has been
inadequate - to say the least.
In 1993 he returned to live with me because he was unable to do
his job in construction.
For the next two years he stayed with me. In May
1994 I became significantly ill. I have
been diagnosed with GWS (?!),
peripheral neuropathies, movement disorder NOS, Lymes disease, fibromyalgia,
CFIDS, allergies, MCS, depression, and others. I continue to be
pretty ill -
have been fired from my job and have no income. My brother continues to be ill -
and is staying with friends and trying to get by.
I have no answers to questions from spouses, and other close
living contacts, except to preservere, don't give up, it is not in your head,
and many others are in the same spot as you. Keep up your spirits, keep in touch
with others in the same situation, write your Congress members - keep up the
pressure. Maybe someday we will find out what happened to our
loved ones and
what is effecting us.
All my best to all of you,
Erika Lundholm (lundholm@cruzio.com)
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12/04/96
My husband was a Radio Operator - Cdn. Hq Sgnls Squadron. Served in
Persian Gulf 1990-91 ... I may not be a veteran but as the wife of one of the
veterans I also have to deal with my share of the aftermath of this
non-chemical war yeah right and I'm willing to buy that swamp land without
looking at that too. I'm excited by all the encouragement from the different web
sites that we have been told about by other vets. Continue the fight
...
June Cainey
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Date: 96-11-02
My husband was forced to retire in August because he couldn't pass the Army
PT test anymore...of course, there was "nothing wrong with him," according to
the doctors. All the
stuff that's being brought to light these days kinda
vindicates him.
I'm still hanging in there and although most of my symptoms seem to have
subsided, I still
have a weird rash on my face and neck that no one can
explain. Have you heard of anyone
else with an unexplained rash that itches
like crazy and looks like large red welts that seem
to be photosensitive,
especially to sunlight? I'd like to hear what other people have discovered and
any treatments proposed. They thought it was a fungus but that was proved wrong
when the fungal medication made it even worse.
Karen
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Any comments??? Any other wives having similar problems? Let's hear from you. Send in your responses to Karen or something you would like to share or exchange with other Significant Others... Your letters will be posted here...
DStormMom
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Dear DStorm Mom,
I have a son who served in Desert Storm who is disabled now from the "mysteries" of the war. He appears to have Parkinson's Disease. But he also appears to have Post Tramatic Stress Disorder to complicate all of it. None of this has been diagnosed by the military hospital.
It is difficult for me to talk to anyone about all of this. I have
so much anger and bitterness.
It fills me with disgust. I just
wanted to touch base with you. In some way I hope to have
a person to
converse with that will help me find some acceptance of this situation.
Just
a little support...because my family and friends don't really understand
the depth of
my angry feelings. I would like to do something to help with
bringing out the whole story.
Let me know is there is something I can
do.
Thank you......
Dianne M.
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My fiance was in Desert Storm and is experiencing the "Desert Storm Syndrome." He is having chest pains and stomach pains and has frequent headaches. At first I thought that maybe what he is feeling is somewhat in his head but a doctor that he went to see recently told him that what he is feeling is real and not to let anyone tell him otherwise. I now realize that this is real but no one is giving us any answers. My fiance, has been going to VA hospitals for months now and all they do is give him the run around. He finally went to the VA hospital in Boston and might have actually found a doctor who cares or is willing to go out on a limb and maybe diagnose something; not until the blood tests come back in another month,though.
So while he is not feeling well , I don't know what to tell him,
because I have no idea what
he is feeling and I get frustrated when he stays
home from work day after day because he is
not feeling well. I want to be
able to help him but I don't know who to turn to and all I want is answers too,
after all I want him to get better more than anything.
If you would, I was wondering if you could send me any information about answers that you may have about this "syndrome." How are your sons doing and how are they coping with not feeling well? Any information that you could give me would be greatly appreciated.
Thank you very much.
Sincerely,
Jennifer
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My husband was in the Marines during the Gulf War. He spent seven months there and was part of the first operation to cross the enemy lines. He has shown some of the symptoms of the Gulf War syndrome. Our biggest concern now though is our children. We have a two year old girl who is by all standards healthy and normal. She has a few allergies that we can't find on either side of our families, but it's not real serious. But our son who was born on September 20, 1995 has been a medical nightmare. He was born with eleven fingers to start with and then developed severe upper respiratory problems due to they believe allergies. And his biggest health problem is that he was born with two medium size holes in his heart. His condition is called Ventral Septum Defect (VSD). It is not an unusual condition but the majority of them close on their own by the time the child is two months old. Our son's has not and because of the size of the holes they have said now that they won't. They will probably due open heart surgery on him to correct the holes some time in November. We have heard that this defect in common with Gulf War Vets but are unable to find any information to support this. We are hoping you might know of someone doing research or where we can find the information. Right now his medical bills are killing us and we are limited as to where we can search. Hope to hear from you soon.
Thanks Again,
[ Name withheld for respect for author's privacy ]
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NOTE: Anyone knowing or having information that may provide or be of some help to the above Mom, PLEASE email me at DStormMom, so that I may pass it on, and/or put you in touch with her..
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