Lääkäreiden mukaan Suen olisi pitänyt parantua 10 päivän antibioottikuurilla. Sue on kuitenkin edelleen sairas ja hänellä on vaikeuksia saada lääkkeitä sillä hänellä ei ole vakuutusta. Kivun hoitoon hän käyttää Bowen tekniikkaa. Sue on kirjoittanut kokemuksistaan kirjan "No Compassion Observed".
The Military and Lyme Disease
When we have so many soldiers over in Iraq and our country is supposedly under a watch for terrorists, one tends to forget we are in a war everyday with the Lyme Disease Discounters (LLDs). It's not a war we read about in the newspapers or see pictures of -- no battlefield where this war is raging; it's not making the cover of "TIME" magazine, or splashed on our television sets, nor is there talk about it on the radio. However, it's a war! Lyme Disease causes just as much destruction as we saw on 9/11 when the Twin Towers were hit; has more wounded than the final count, and finally, just as many, if not more, casualties. But, there are survivors, too. I am a survivor, in spite of or the military's handling of Lyme Disease!
The military has an unusual take on this disease. They choose to ignore it! Where the civilian world prefers to argue over the diagnostic tests and treatment protocols, the military follows the CDC (Center for Disease Control) protocol to the letter. However, they have failed to actually understand the CDC's protocols that state it is clinically diagnosed and reporting is for tracking purposes. The military has chosen to interpret or decode the CDC's view of this disabling and deadly disease in their usual military fashion -- "MDMP" or the Military Decision Making Process. I know this firsthand, as do thousands of other members of military families, because I was a military spouse (U.S. Army).
My husband served over twenty years. He ate, breathed and lived in camouflage; was an outstanding Non Commissioned Officer; and, was illegally listed as AWOL because I have Lyme Disease and was literally dying from complications. Yes, BECAUSE I have Lyme Disease, a seasoned soldier was humiliated, disgraced and forced to live in poverty. Some end to an unblemished service record!
Our lives were going pretty well. We were a model military couple and enjoyed our green-suit lives. Then, in 1997, while my husband was away on duty, I met a tick. It was a hungry little bugger and I ended up with three EMs (bulls eye rashes) on my upper, left arm. It wasn't long before I had the "flu" that beat all others. The diagnosis was a comedy of errors; treatment was a hit and miss therapy; and, the outcome was one I would never have suspected.
The military ran me through Doxy and Motrin; the ELISAs were negative and no Western blot was done (according to their understanding of CDC's protocol); and, I started going downhill. I got lost on roads I used everyday; could no longer retain what I was reading; my eyesight started failing; weight gain was now a problem; and, I was testy, to say the least. I suffered with terrible headaches; my hands and one toe were tingly and numb (as occasionally were other extremities); sunlight was now a hindrance; and my memory was deteriorating. I was a mess! But, like the "Energizer bunny", I kept on going, even with pneumonia every year now. I just knew that if I kept working and taking the medication (when I could get it), I would beat this "thing."
Then, the new orders came and I was not going. It was a blow, but we had lived through worse. Besides, after this tour, it was retirement for us and a trip to Australia! I researched Lyme Disease and happened to stumble onto a civilian doctor in southern Texas who would be willing to treat me. Right after relocating to Texas, I had a gallbladder attack that required immediate surgery. But, the move was made, I recovered alone and my husband was on his way to The Land of The Morning Calm -- better known as South Korea.
Eight months into the tour (which, per U.S. Army regulation is a complete tour), he decided to take mid-tour leave. He made the arrangements to come home and was "appalled" when he stepped off the plane. "She was white as a sheet and looked so pale that I could tell she was in so much pain," explained my husband. I hadn't let on that the pain was so bad that there were some days that I couldn't move or stand long enough even to make a peanut butter and jelly sandwich. I couldn't remember who to call if there was an emergency and I had no family that could help me -- only the military family and they refused to assist. But, I surely couldn't bother my husband with any problems at home. That just wasn't the military-way and besides, what could he do when he was more than half-way around the world?
Within 24-hours, my husband had me in the military medical clinic. The doctor there stated that I "should have been cured with 10-days of antibiotics" and promptly tried to dismiss me. I insisted that I was ill and was referred to the main medical facility. Here, they decided that I had a "cyst" that had been missed during the gallbladder surgery, ordered a round of tests and wanted to schedule surgery, but it would have to wait -- Iraq was flaring up. This was the U.S. Navy. After much fuss and involvement from the Navy establishment's commander, I was given permission to return to the nearest U.S. Army's medical facility.
I was poked, prodded, experimented on and was ultimately classified as a lost cause -- a fake. The Air Force doctor fought for one more test. It took weeks, but the medical board agreed. If he found nothing, no more would be done. In the meantime, my husband asked for an extended leave since he would have to drive me to and from these appointments (130 miles, one way). It was granted.
The Air Force doctor scheduled the test and I was sedated. What was supposed to be an out-patient procedure, turned out to be a 2-day stay in the hospital -- pancreatitis. My symptoms were expected to subside and they assured me that the original problem, now repaired, had been a completely blocked part of the intestines. But, within a few hours after getting back home, the vomiting and pain started up again.
My husband put in for a compassionate reassignment and was denied five times -- because it was Lyme Disease (and not cancer or an eviction, which are reasons for compassionate reassignments). Six different physicians wrote letters stating that my husband needed to be here to take care of me as there were more necessary tests and surgeries; documentation and medical reports were forwarded; and, even President Bush was called for assistance. My husband had less than 8 months until retirement and I was given less than 5 years to live -- every day counted now. With legitimate orders in hand to stay another 21 days, the South Korean command illegally listed my husband as AWOL (absent without leave). No one seemed to care...not even President Bush.
Congressmen were called; the Pentagon was called; and even South Korea was called. No one would listen and our world, as we knew it, stopped existing. We lost the paychecks, benefits, privileges, and most importantly, our dignity. We went from paying our bills to being evicted; buying a months' worth of food to selling my wedding rings to eat for a few days; and, eventually had to garage-sale our belongings to survive. Lyme Disease and the military's treatment weren't going to get us down. We still had our will to live -- even if it was on hand-outs while living in a dive.
It was the military's understanding (or lack thereof) of Lyme Disease that landed us into hot water; not something we had any control over or that there was any cure for. And, in the military, there was neither understanding nor compassion. After two years, we are still fighting to get our lives back. I have written letters, made many calls, enlisted help from other Lymers and agencies, and have even written a book about this experience (NCO-No Compassion Observed, American Book Publishing, soon to be in book stores). But, the military has never made good on their promises of getting this wrong rectified and has now gone silent -- swift, deadly and silent, as they say in the military. Swift in passing judgment without all the facts and totally ignoring Lyme Disease as a reason for any compassion; silent to pleas for help or understanding from a soldier who gave 20 years of his life for this country and a wife who sent hundreds of care boxes to other soldiers and South Korean orphans; and deadly, if that brave soldier, my husband, had not legally stood firm in seeing me through this brush with death.
We still live in poverty, but have survived. I no longer write letters or make calls, the book will be hand delivered as my last stand. I still have Lyme Disease, but have found the Bowen technique (Bowen Research and Training Institute) for the pain. I barter for medications since we still have no insurance. And, I have learned the art of dumpster-diving, using clothes pins for more than laundry, and the 101 dishes that hamburger will make. You see...this disease may get us down and take away our lives as we knew them; the physicians may refuse to treat properly and take away our right to wellness; the government can stand on their protocols and deny there is a Lyme Disease problem; the drug companies can still slip medications by the FDA (Food and Drug Administration) and continue to put our lives at risk; and the insurance companies will continue to make their millions while playing doctor...BUT, one thing that they can't take from us is our will to live! Our will to survive! Our will to adapt! And, our will to connect!
So, my Lymer friend, if you have seemed to have lost it all and are feeling depressed and alone, remember your will to live and connect. Find a support group, in person or on the internet; barter for things you need; get involved with something positive; listen to a taped book; get on the NeedyMeds.com for free medications; take a walk; write a poem or a letter; research everything you can on Lyme Disease; find someone less well-off than yourself; pet your dog or cat; meditate; watch your favorite movie; exercise, even if it is in a wheelchair; listen to a good talk-show on the radio; clean something (as my dear grandmother always told me); take a nap without any guilt; surprise a friend with a card or a call; relieve stress any legal and alcohol-free way; or, take a class on Suite 101 and expand your mind. Whatever you do, don't give up, always know that there are others like you, look for ways to shake the Lyme Disease complications that you can control, and seek a Lyme Literate Medical Doctor (LLMD) nearest you. Always remember -- you are not in this alone!