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.


mack2380 said...

Mary, thank you for writing that beautiful piece. I never realized that being of service to your country could set off so many chronic illnesses. Thank you for being so brave, and fighting for our rights even though it cost you your health. I never really thought about joining the service, because I was already dealing with some invisible illnesses at that point. Even if that wasn't in my life though, I don't know if I could have stepped up as bravly as you did. I wish you luck in managing all of your symptoms and your continued success with the VA. Just know that in writing those words, you showed a great deal of us what a hero can be.

mary said...

That is so nice.