Saturday, November 13, 2010

Saddam's Revenge-20 Years of Gulf war ILlness

i got 21 vaccines in March 91 to deploy to Saudi Arabia for Desert STorm. After i got the last shot of 2.5cc of gamma globulin in each bottom cheek, my legs burned for 48 hours or more. I also had other eruptions from other shots. Before we... could get off the plane, we had to swallow 2 pills. In 2 months, i had a bleeding stomach, pelvic pain, chronic bone pain in my lower legs, Saddam's Revenge(chronic diarrhea). The MASH tent became my second home. We had to breathe in the smoke from the Kuwaiti oil well fires. We experienced severe sand storms where the sand goes in every crevice and your eyes burn. All kinds of bugs, insects, scorpions, sand fleas, sand flies, etc,. When i first got out, they gave me Metamucil. When i got to ORlando, the VA said "it was all in my head." I would take 2 bites of food and have to go to the bathroom. IT was terrible. It got to where i couldn't stand up.I had multiple laparoscopies to find the source of pelvic pain so severe , i couldn't sit up straight. It was terrible. All of the stress trying to get the VA to do something increased the anxiety i had from the war. When i first got home, i would jump at the sound of a fire engine's siren and my body would go into Air Force mode to prepare for an attack. The severe chronic pain led to reactive depression. Then my muscles started aching , 10 yrs after the war i got diagnosed with fibroymalgia, neurogenic bladder. Over the years, i had multiple tumors pop up in major organs, breast, kidney, uterus, ovary and recently, a huge pancreatic cancer scare that took over 1 year to see if it was cancer. I am still not out of the woods. The "thing" is actually in my common bile duct and i need a 2nd colonscopy this year. I was diagnosed with ulcerative colitis in 2006 and given the proper meds. I felt alot better. I did deteriorate quite a bit up until 2005. I was using a cane, then a walker with a seat, and then a wheelchair. I lost all my friends because i couldnt stand up or very long, or go too far without a bathroom. It's been a living hell. In 1997, i was diagnosed with lupus. Then the VA said it was RA, then they said the lupus was "psychosomatic". Love that one. Then of course, it was validated again when i moved to Miami and i have had lupus 13 years. I did lose my ability to concentrate or focus but it is coming back. I am ambulatory again, thanks to National Pain Institute and Medicare. The VA in Orlando wasnt doing anything for my severe pain so i used Medicare and got private help. Some of the best medical care i have ever had. They sent me to War Related Injury clinic in DC and that didnt turn up much. I moved to Miami in DEC 07 and now i have a Gulf war illness doctor.
Those vaccines and the toxins made me infertile so i could not have children and then i went into premature menopause so there is no hope of having my own kids. But that's ok. Dr Nancy Klimas has been a source of relief. I think i realize i have had CFS since right after the war. My autonomic nervous system is out of whack and i have orthostatic intolerance, severe at times. I fell more than 7 times last year. Luckily, it is getting better. I dont have an appetite, who knows why? I am in the VA hospital 4 days a week, and then Aventura hospital sometimes on Wednesdays. I go to Dr Maldonado for my FM and Lupus. He has been the best for me as well. I have MCS from breathing in jet fuel in SAudi Arabia. They didnt have time sometimes to turn the jets off. We had to load or download the passengers and bags and let it go. I remember standing out there overseeing and smelling that fuel. Right after the war, i couldnt even go put gas in my car due to the smells giving me asthsma.
I have new spots on my lungs and will get that checked in the New Year. I am deconditioned again now and i have had muscle wasting again but i am walking and going to physical therapy. I am trying to get more into writing my story. I hope this helps at least one other person understand that Gulf war illness, FM,CFS are all real diseases and please dont tell me "But you dont look sick." I know that and i cant explain that either. ...

Sunday, September 12, 2010


Turns out this week is Living with Invisible Chronic Illness Week. I can certainly relate to that. I live with several invisible illnsses-lupus, fibromyalgia, hypertension,diabetes, Gulf war illness, Ulcerative colitis,....I think that is enough to start with.I have 14 diagnosed illnesses and 57 prescriptions at last count. I was diagnosed with Irritable bowel right after Desert Storm. It started with several stomach and intestinal problems in Saudi Arabia. Chronic pelvic pain also started and it lasted for several years until i went into premature menopause. Another thing that goes hand and hand with being in Saudi Arabia is skin problems.
In March 1991, i received 21 vaccines and some pills we had to take in Saudi Arabia. From that day in March, i had severe pain in the bones of my legs. Of course,it spread to joint and muscle pain and i have had chronic pain since 1991.I went to Saudi Arabia a young, healthy,beautiful and vibrant woman. It has been downhill ever since. However, things are better some now. I used to use a wheelchair, a walker with a seat and a basket, and a cane.
The biggest adjustment i have had to make is not being able to work due to the high number of chronic illnesses and the level of care needed.Most people assume i am 100 percent healthy and able to do anything anyone else can do.
The hardest thing about mornings is getting out of bed in severe pain and not feeling good. Regardless of what time i get up in the morning, some days i have too much pain and it's difficult to get going. When i know have doctor appointments 4 to 5 days a week, it doesnt make it any easier to deal with the malaise, pain, and general sense of feeling "ill."
My favorite medical tv shows are Dr Oz, the Doctors, and House. House really hits close to home because he is a chronic pain sufferer. I couldnt live without my health buddy machine. it communicates with the VA hospital. Other machines important to me are my Cpap, my blood pressure machine and my blood sugar kit.
The hardest part about nights is not knowing if you are going to be able to sleep somewhat well and not wake up too much. You hope the pain doesn't wake you up or in my case, you don't wake up with severe pain and stomach problems.
Like i said, earlier, i have 57 VA prescriptions. Of course, i dont take al of those daily. That doesn't count medicines from CVS. Regarding alternative treatments, in Winter Park, Fl i used to get magnesium IVs and B 12 injections every Friday and i would have energy for at least 4 days. It was great. I really miss those. I also did Biofeedback too. I am willing to try anything at least once. LOL
If i had to choose between an invisible or visible illness, i think i would stay with the ones i have. Either way, you are going to get comments,good or bad,depending on the situation.
Regarding work and a career, i had to give up on that in 2001 when all of my illnesses sort of came to a head and were exacerbated by injuries of a head on car crash. I had to give up so i could focus on getting better. Now, i would not say a career is possible but i think this writing thing is the best avenue. Thankfully the VA has recognized most of my illnesses are from Desert Storm and they pay me accordingly. That with Social Security Disability makes things a little easier.
People would be surprised to know i have so many serious chronic illnesses. When people look at me, they probably don't see that. They would be surprised to know that i am a woman veteran and my name is inscribed at the Women in Service for America memorial at Arlington National Cemetary.
The hardest thing to accept about my illnesses/challenges/disabilities is that i have had to give up on the ideas of having children,having a big career with lots of perks and income. I was hoping to be a televison pundit after i finished my two degrees in Journalism and International Relations. It's ok,though.
Something that i never thought i could do with my illnesses was travel on my own, but i proved myself wrong in 2006 when i decided to go by myself, cane,walker, and all to a cabin at Oleta River State Park in North Miami Beach and stay by myself there. It turned out to be a major turning point in my life. When i left there, i knew the place where i wanted to move to and i felt that God had spoke to me and said that i needed to be among the sunshine,ocean, and palm trees every day.
The commercials about my illness would include my rheumatologist, Dr Maldonado and the great pain center i went to in Winter Park, Fl. Those people have been crucial in my health taking a turn for the better. They gave support and encouragement. It would show a happier person trying to encourage others. Something i really miss doing since i was diagnosed with lupus is going out to the beach all day and being able to stay out there for hours having fun in the water and on the beach. You cant have all that sun exposure with lupus. It was really hard to give that up. I enjoyed going to Haulover Park every afternoon and sitting under my favorite palm tree on the beach for 3 or 4 hours. A new hobby i have taken up since my diagnoses is writing on a blog about my experiences as a Desert Storm veteran trying to get proper medical care from the VA. If i could have one day of feeling normal again, i would go to Universal Studios and ride all of the rollercoasters and go to everything the park has to offer. Then,after that, i would put on a pair of high heels and go out to the clubs and dance all night like i did in my 20s. Oh those were some fun days!
My illness has taught me to have even more compassion then i had before. I have finally realized that when negative incidents occur, the other person may be dealing with something also. This is something important to remember, but not all of us do in the heat of the moment. My illness has taught me more self reliance and more about me.
Want to know a secret? One thing that people say that gets under my skin is "It's all in your head." That is what i heard for the first seven years that i was going to the VA trying to get medical care for chronic diarrhea and chronic pain from Desert Storm. It was a battle but it only made me stronger. But i love it when people say:"You look great" and even sometimes, when people say:"But you dont look sick!" One of my mottos i go by is on a little magnet i bought at Barnes and Noble. It says" When you're going through hell, keep going." The past month i have been telling myself "Rome wasn't built in a day!" Going through cognitive behavior therapy to erase old tapes and get rid of the bag of negative emotions and thoughts that seep in when you have chronic illness or several of them!
When someone is diagnosed, i like to tell them not to worry, that things will be ok. I try to encourage them whenever i can and if there is any way i can help or something i can do,i sure will do whatever i can to help.
Something that has surprised me about living with chronic illness is that it makes you a lot stronger than you ever imagined you could be. It makes you mentally tough but still the negative does creep in sometimes.
The nicest thing anyone ever did for me when i wasn't feeling well was clean my apartment while i was at the VA hospital then cook dinner or bring me dinner any time i didn't feel good. My ex-boyfriend Ian ,he took really good care of me that way for 15 years.
I am involved with Invisible Illness Week to raise awareness and to garner understanding about invisible illnesses like the ones i have. I have been verbally assaulted in a Publix parking lot over not looking handicapped enough for my placard. I have been questioned over looking well but being so sick on the inside.
The fact that you read this list makes me feel validated and happy. Know that sick Desert Storm veterans have many invisible illnesses under the umbrella of Gulf War Illness. For more information, go to Thank you.

Monday, August 23, 2010

Eric Shinseki's message to Gulf war veterans[/

August 2010 marks the 20th anniversary of the beginning of the Gulf War, launched with Operation Desert Shield and followed by Operation Desert Storm. VA honors this milestone with a renewed commitment to improving our responsiveness to the challenges facing Gulf War Veterans.

First and foremost, VA is an advocate for Veterans – we are committed to finding innovative solutions to long standing issues and to empowering Veterans and other stakeholders to be a part of the solution.

VA recognizes and values the selfless service and sacrifice of Gulf War Veterans and their families, and continues our efforts to address the unique health needs of Gulf War Veterans.

Today, more than 250,000 Operations Desert Storm and Desert Shield Veterans receive disability benefits from VA. VA has treated nearly 150,000 Operations Desert Storm and Desert Shield Veterans for illnesses associated with their military service. We vow to reach more of these Veterans and have taken steps to do so. Earlier this year, VA proposed a new rule to make it easier for Gulf War-era Veterans to obtain disability compensation and related health care. This rule, once it takes effect, will grant presumptive service-connection for nine
infectious diseases associated with military service in Southwest Asia and Afghanistan.

In addition, VA’s ongoing Gulf War research and Task Force efforts continue to examine multisymptom illnesses, and other conditions associated with service in this conflict. VA continues to participate in Federal research efforts on Gulf War illnesses, contributing more than $158 million of the $406 million in total Federal commitment.

VA is taking bold steps forward in how we consider and address the challenges facing Gulf War Veterans as well as the challenges facing all Veterans. Our commitment to the Nation’s Veterans is unwavering.

As your Secretary and fellow Veteran, I pay tribute to all of you who so bravely served and thank all Gulf War Veterans for their heroic efforts. Our Nation owes you a debt of gratitude. We acknowledge and honor the contributions of your service. Thank you.

--Eric K. Shinseki

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Sunday, June 27, 2010

Veterans and loved ones shouldnt have to work so hard for simple things..

I just happened to catch some of 60 Minutes and Dateline NBC tonight. The first featured a wife seeking answers about the crash of a Blackwater plane in Afghanistan. You see her husband, another officer, was killed in that crash. It happened in 2004 after the aircraft took off from Bagram Air Base in Afghanistan. The terminal had no aircraft tracking equipment and destination, a landing strip in Farah,western
Afghanistan had, well, nothing. It was just a landing strip. The only way they found out the plane crashed was that the soldier waiting for the plane on the landing strip notified his CEO that the plane never showed.
60 Minutes aired a clip of the conversation between the pilot and the mechanic. The pilot said he "hoped" they would make it over the mountains, the tallest mountains in Afghanistan. Unfortunately, the pilot took off in the wrong direction. The officer,a passenger in the back, mentioned that the route didn't look familiar. When the pilot realized the plane didn't have the lift to get over the mountains, he tried to do a 180 to turn around and then they crashed. Everyone died. All those people killed by yet again, Blackwater, the infamous company that did questionable things in Iraq. Now they are ferrying our soldiers around Afghanistan with no tracking devices, no communication at the destination sites. I mean , seriously, i have about had enough of this stuff. It is a downright shame that they put our soldiers at risk.
On Dateline,a father was seeking answers about the death of his son in Afghanistan in the Battle of Wanat. The government has been slow to provide answers about his son's death. This is the inspiration for today's blog. I haven't written in awhile due to medical appointments at least 4 days a week. I am dealing with so many chronic illnesses on my own. These two stories moved me to write again.
It ought to be a crime for government officials who are slow to provide answers when loved ones die in service to their country. These men and women have made the ultimate sacrifice and their loved ones have the right to ask questions and get answers so they can have some type of closure, if that is even really possible in these cases.
Government officials, like VA employees, really don't want to do any real work to help veterans and soldiers that need alot back from their government. Two weeks ago at the VA, i needed my phone number changed. It's a simple thing to change a phone number. However, the ordeal i went through just to get a phone number changed was ridiculous.
I was told to go to elibility desk number 3. Well, i went there and the sign said they were out to lunch. I went over to the counter where the woman admits you to the emergency room and she was busy. I waited and waited. Another woman at the desk was just passing the time,actually wasting time. So the woman on the right passed me over to the woman killing time. She told me to go to transportation. I went to transportation and the clerk said she was too busy to change the number right then. I went to my primary care team and waited and waited until someone asked me if i need help. I said i had just gotten a big run around and that my cell phone number was wrong in the computer. That took at least an hour going around and around for a phone number change. Can you imagine what happens when someone is asking for information or details about the way their son, husband, daughter, father, mother, sister, brother, husband, wife died in Iraq or Afghanistan or Djbouti or Pakistan?
I mean, seriously, do you see my point? This is all, in one word, shameful.
Shame on you , DOD,VA,Blackwater. I don't even know why Blackwater is still working for the US Government. Like i said, all of it, is downright shameful.

Thursday, February 11, 2010

Lost posts

Just to let everyone know, 3 years of posts were lost when Google or Blogger did something to their site last month. I am so sorry about that. I will be blogging more soon. Thanks for your patience.