Saturday, June 25, 2011

The Distant Lady is a War Veteran

Please enjoy this poem written in my honor. It moved me to tears.

Wednesday, June 8, 2011

All blogs have been combined.

I recently noticed that the title of this blog was misspelled. I have combined all of my old archives into one new blog.

Saturday, March 26, 2011

Part 2 GWI and CFS/ME Research Update Conference

Part 2 Continued....
Chronic Fatigue Syndrome
In Chronic Fatigue,there is increased chondroitin sulfate in cartilage and connective tissues. There is also increased Aurora A which can lead to mitosis and malignancies like cancers.
In Gulf War Illness, the network is being pulled in several different directions at one time. Again, Gulf War Illness is not like Chronic Fatigue. It is more connected and it is chronically overactive in the body. All the major systems of the body are on high alert and overreacting. I found this encouraging as it could be the reason why i have fibromyalgia, complex Gulf war illness, hypertension, diabetes, systemic lupus erythmatosis(SLE),chronic diarrhea(Saddam's Revenge),chronic pain,sjogren's syndrome,female disorders and sterility, premature menopause, miscarriage,chronic lymph node involvement, chronic urinary tract infections, shingles,continuous findings of masses and tumors in the breast,kidney,uterus,pancreas,swelling of the spleen, need i go on? I am exhausted just having to write all the illnesses i deal with on a daily basis.
In Gulf War Illness, there is distinct porphyrin (hemes) and ceramide (apoptosis)signaling. All of the body's networks, highways, and biways are more active in Gulf War Illness. Ceramide is THE hub among hubs in the body. There is too much immune B cell activation, angiotensin is up(this could explain the arrythmias, hypotension, hypertension that is active in Gulf War vets and CFS. That alone is why it is important to monitor your blood pressure before, during and after exercise and especially important here in hot South Florida to keep fluids going to keep your blood volume up. The hypothalamus, pituitary gland, the adrenal glands and ATCH are super important in energy regulation in the body. You must really try hard and keep a log book of your sleep, stress, blood pressure, pulse, etc, so you can know the BEST Time for YOU to expend some energy. You must try to figure out the waves of energy and other symptoms you feel to optimize the best treatments,exercise times,etc,. for you and only you.
On a final note, More healthy Desert Storm veterans ,including NonDeployed Gulf War Veterans are needed asap to get in some of the studies so the work can continue to identify possible treatments, therapies, and medicines that might make living a little easier on us. Donations are needed to help continue the work too, whatever one can give. For the couples study, call 305-355-9200. Again that is a study conducted by televideo. You can donate to the Morton fund for Chronic Fatigue at the University of Miami or you can donate to the Southern VA Foundation for Research at the VA. Dr Klimas needs healthy vets and sick vets for studies in her practice at the VA. She also consults with vets by televideo conferences. You can write her a letter at the VA :Dr Nancy Klimas,Veterans Affairs Medical Center,Dept of Medicine (111-1), 1201 Nw 16th st, Miami Fl 33125. You can also send an email to Fanny Collado at In your communication, please indicate if you have CFS or GWI,also if you are a vet or active duty.
P.A.N.D.O.R.A., a 501(3)c charity organization has funded alot of these studies. It was founded by Marly Silverman, a patient herself and a tireless advocate for those sick with CFS,Lyme, Fibromyalgia, and Gulf War Illnesses. They also accept donations and need volunteers to help lobby the government,Congress on May 12,the International Awareness Day for Neuroendocrineimmune Disorders. Please help us on that day to advocate for all of the people affected by these illnesses.
Please join us.

Disclaimer: I am not a medical doctor. I am a very ill sufferer of multiple neuroendocrineimmune chronic illnesses of the past 20 years since Desert Storm. I have done extensive research, read journals, written various doctors by email, etc,. Please view the video of the conference when it is posted on If you have any questions, please send me an email at

I would like to thank all the participants of the studies, Dr.Klimas, Dr Broderick ,Marly Silverman and everyone else who is reading this for your help and support.
I am looking forward with hope and belief that in the next 1 or 2 years, one of these doctors will have some answers and things will turn around. After all,i have a 50th birthday in 2012.
Again, thank you so much for reading this.

There's a Light at the end of the tunnel for sick Gulf War Veterans

Today i attended a conference at the Miami VA hospital entitled:"GWI and CFS/ME Research Update". It was held to give an update on all the research completed and to inform the audience of future research plans. The principal player for Miami is Drl. Nancy Klimas, Director of the Center for Multidisciplinary Research on Gulf War illness and Chronic Fatigue Syndrome. A video was filmed and will later be presented at
I did notice there were very few regular VA doctors there. I was disappointed because i feel the primary care doctors and other doctors on my team or anyone else's team should have been there to learn more about it.
In introductory remarks, Dr. Nancy Klimas said that anyone suffereing from Gulf War Illness or Chronic Fatigue Syndrome needs an immunologist on their team. Gulf war Illness involves many body mechanisms and affects the following areas or necessities: clinical ( a good primary or internist),immunology,endocrine,autonomic nervous system,sleep, exercise physiology,PNI, and genomic medicine. It has so many subgroups as you can see.
For those of you who may be hearing about Gulf War Illness for the first time, 700,000 American troops deployed to Kuwait,Iraq,Saudi Arabia, and other Gulf nations. Other nations also deployed and many of their troops also suffer with this illness. These American troops were exposed to biologics(chemicals)like sarin gas from the Khamisiyah dump blowup in March 1991. They had to breathe in smoke from the Kuwaiti oil fires that spread far and wide over the area. They had to deal with major sand storms, all kinds of desert insects, bugs, scorpions, nasty living conditions. Many troops in Kuwait had oil dripping on them or over them when they trying to deal with the disaster of the oil wells being blown up by Saddam. I myself as an Air Transportation Supervisor breathed in lots of jet fuel exhaust overseeing the loading and unloading on troops and baggage at King Abdul Aziz air base in Dhahran, Saudi Arabia.Also the major stresses of the situation had a huge psychological effect on Desert Storm Veterans. That psychological aspect is often referred to as psychoendocrineneurology. Just like CFS/ME,GWS is a neuroinflammatory disorder.
An eight year study of Gulf War Illness concluded recently. They used several different methods of trying to identify what exactly is involved and what makes it worse or better. For further in-depth explanation, please keep checking the CFS knowledge website for a detailed discussion. It should be up within the week. They used exercise in the study where the Vet would exercise, have blood drawn, rest 4 hours, and have blood drawn again. They studied a microarray of genes, longitudinal biomarkers, Dynamic Modeling (DDD),and murine retroviruses.
In the twenty years since Desert Storm, there has been no NATIONAL study of Gulf War Illness or CFS for that matter. These illnesses are just as debilitating as heart disease like congestive heart failure.
ONE THIRD of the 700,000 American troops deployed for Desert Storm are sick with Gulf War Illness or components of it. I,myself, have one of the most complex cases of it my doctor has ever seen. Very few women were deployed to Desert Storm but out of those, they have a 16 percent higher chance of being sick with Gulf War Illness.
Like CFS, Gulf War Illness has the following components: fatigue,depression,arthralgia,myalgias,sleep disturbance,cognitive dysfunction,diarrhea(or as i like to call it, Saddam's Revenge),asthma or COPD-like symptoms, chemical sensitivity, and allergies. Fibromyalgia, which affects 1 out of 4 Desert Storm veterans has symptoms that overlap Gulf War Illness and Chronic Fatigue Syndrome.
One of the possibilites that even i as a layman pondered is that something, the vaccines or the oil smoke possibly activated genetic predispositions to immunologic disorders like systemic lupus(which i have), sjogrens syndrome(me), rheumatoid arthritis, diabetes (me),etc,. There was a trigger event or events. The meidators(organ systems)then worked like a domino effect. First the immunology of the veteran was affected, then the endocrine(hormones)system, then the neuroendocrine system, then our sleep,then our psychosocial affectations or reasonings,(depression,anxiety,etc,.)then our bodies had a viral reaction which appears to be triggered most likely by possibly being injected with Human Herpes 6 vaccine. Also another vaccine which most likely was a trigger event was the last vaccine i received , the 21st vaccine was 2.5cc of gamma globulin in each butt cheek. This is the one that I think started it all. I asked the panel what gamma globulin would do to our immune system and it's an activant. Here's the shocker: it is a manmade acquired immune defienciency virus similar to but NOT HIV. Gulf War Illness is NOT HIV. AFter our bodies had a viral reaction and the persistence of everything previously reacting in our systems,we got Gulf War Illness.
Dr. Lina Garcia conducted a Good Day Bad Day Study. She studied Natural killer cells which are the body's first line of defense. She studied the patients when they were having a good day and when they were having a bad day by checking their bloodwork and looking at the NK cells and neuropeptide X, a neurotransmitter. it connects the immune system to the autonomic nervous system. This results in chronic immune activation. This is the key to understanding the difference between Gulf War Illness and Chronic Fatigue. Chronic fatigue SUPPRESSES the immune system. Gulf War Illness is a result of OVERACTIVATION of the immune system. Although the two diseases have similar symptoms, they are two different unique illnesses. Of course, a veteran could have both of these illnesses most likely.
Cytokines were also discussed. They ar proinflammatory and antiinflammatory. Excessive cytokines cause fever, fatigue, and pain. Interleukins are also involved in the immune system. One of the key interleukins involved in Gulf War Illness is IL-5. It causes chronic complex disorders in the body.
The next speaker was Dolores Perdomo, PHD. She discussed a CFS Telehealth Study that was conducted. They swabbed the patient's saliva to check the cytokines.A SMART study was conducted and still needs more volunteers. In this study, they used cognitive behavior therapy to deal with emotions, stress, and stress management to see if that would deliver any type of relief. The health status of the patient was checked and that included checking the immune regulation. They took a good hard look at the quality of life of the patient. There is another study being conducted for couples.This study is called the Chronic Fatigue Syndrome Videohealth Study. you must have CFS and have a partner willing to participate between ages of 21-75 and you must speak,read, and write fluent English. You receive 100 per couple for your participation.
The keynote speaker was a chemical engineer/research scientist, Dr Gordon Broderick. I would kiss the ground he walks on. He is a godsend for sick Gulf War Veterans. Finally, after 20 long years of suffering and pure hell, i feel hopeful that in the next year or so there are going to be real answers and medicine to help us deal with this horrible, debilitating and disabling disease.
Dr. Broderick's subject was "Shifting Immune Conversations: A Systems Biology Approach to Gulf War Illness and CFS/ME. Just seeing that projected on the screen was encouraging to me. In a circular pattern, there are 3 major components: The Brain and Nervous System,the Energy Utilization,altered immune communication and altered immune homeostasis. High levels of TH1 and TH7 were found along with TH2 which causes allergic inflammation. There is a diminished Natural Killer Cell (NKCC) responsiveness to IL12 and LTa. This is similar to what is seen in latent viral infections like shingles or herpes simplex 1 or 2. The immune messenger proteins, IL-6 and IL-10 make the "engine hotter", so to speak. Everything organwise, systemwise,cellwise heats up and acts up, if you will. Neurotransmitters in the brain are also affected like dopamine,norepinephrine, and epinephrine. This is usually why serotonin uptake inhibitor drugs like Paxil or Prozac don't generally work in the brains of sufferers of CFS/GWI. Check your psychotropic meds and talk to your mental health provider.
Again i am not a doctor but i have done 20 years of research on my own reading lots of studies and medical journals and reading medical textbooks so i could advocate for myself and help others get treatment for this horrible disease, Gulf War Illness. No two sick Gulf War Veterans are going to have the same symptoms or be alike. Here is another piece i had found so fascinating:"The immune system is more unique to a person than a fingerprint." That is fascinating to think about. The doctor advised to be careful with immune therapies or anything that is supposed to help the immune system. It could result in septic shock and you could do if you overdo it.
In Gulf War Veterans,there is suppressed immune metabolism communication. Immune communicators like L-DOPA,tyrosine, and phenlalanine.These are all involved in the biochemistry of stress response in the human body.
A graded exercise study in Gulf War Veterans was also conducted. They looked at immune signaling proteins, stress hormones,immune cell populations,and gene expression in the immune system. They concluded that the immune system in Gulf War Veterans is disorganized. There are more resources(activation) but the body is less efficient to respond to physical challenges. This is why you may golf on Friday and then you may find yourself in severe pain and unable to do anything 10 days later. There is a massive downward effect in the immune system of Gulf War veterans even just four hours later in some of the veterans involved in the study. IL-1 ,involved in fatigue and concentration was high. There also was an increased vulnerability to hydrocarbon exposure. This might explain the chemical sensitivity some Gulf War vets have to gasoline, oil and related products. The name for it is methylnapthalenedegradation. The key word there is napthalene. This most likely was caused by the oil dripping all over the veterans, the oil raining down on them in Iraq and Kuwait, breathing in the jet fuel, the smoke of the Kuwaiti oil fires burning, etc,. This degradation caused platelet activation and increased ATP processing.

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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