This weekend Lyme protests and rallies are being held around the world. In addition to blogging we've been challenged to hold one person's hand and tell them "our story." Well, there's nary a hand to hold, and due to the opposable thumbs issue, Larry is a no go.
Lucky you! Hold out your cyper hands and let me tell you a little story. Really. Let me hold both hands ... you and me, knees to knees.
Previous to 2000 I had been married for 20 years and was/am the mother of four, with whom I stayed home.
* A divorce that was finalized on December 24th, 1998 left me the unmarried mother of four, with sole physical custody.
- No alimony or spousal support of any kind.
- My sons' father paid his "mandated child support" and that was all. No help with school clothes. No assistance with sports/music/art lessons. No trips for the kids. No spending spring vacations with them.
* It was very clear that "sole custody" meant "flying solo." I needed to find a very real job very quickly. Which I did.
I won't bore you with the details but it was a pretty bumpy road for awhile. I dusted off my BA in Psychology and a provisional Elementary Teaching Certification and started working on my M.Ed while substitute teaching/taking care of kids/living life. And finally, I was hired at a local school in town.
That spring break, the first week in April of 2002, I caught the same flu my sons did. I sat on the couch for a week completely drained. At the end of the week they were better. I wasn't. But I dragged myself back to work where I began to sweat and run HIGH fevers of 104. I took time off to "heal." After several ER visits and a diagnosis of "Fever of Unknown Origin" I was sent home and told to drink lots of fluids.
By May I was unable to work at all. I literally couldn't make it through the day. With GREAT sadness and shame, I had to get a sub for the rest of the year. During a routine body scan to find out WHAT was wrong with me it was discovered that my gallbladder was about to rupture. I was asked, "Aren't in you in any PAIN?" Well, yeah people, I've been telling you this for about six weeks now. I have CRAZY pain and you call me "drug seeking." I'm not an idiot. I don't trust ANY of you anymore. Give you fuel for the fire over which you roast me? I think not.
I had my gallbladder removed but didn't "bounce back" as did the rest of the patients in my room. I noticed my abdomen was turning black. I asked the doctor about it and was told, "Oh, that's a little blood in there ... your body will reabsorb it." Not one to complain, I lay in bed looking out at what was finally SPRING in Michigan, and then I saw them. All the little white Christmas tree lights were on in all the trees! It amazed me and I asked a nurse why the holiday lights were on in May. Things began to happen very quickly. My bed was inverted and I heard my doctor's name being called, "STAT! STAT!" He rushed in and explained to me that my gallbladder had been so infected that it had adhered to my liver which tore during surgery. I was "bleeding out." He asked me to sign paperwork so he could go back in and fix my liver. I refused. Nope. I had just HAD surgery the day before. I was SICK. NO MORE SURGERIES. He explained that he NEEDED to go back in. Nope. Not having it. No more surgeries. Let me repeat ... I just HAD surgery the day before. NO WAY would my insurance cover it. Finally a friend offered to pay for the surgery. I signed the paper. We "ran" down the hall and I was being told to take my contacts out. I started to cry realizing that something was VERY wrong. I prayed for my sons and begged G-d to let me see them again. Please, please, please ... don't let me leave w/out saying goodbye to them! I was put into a little room with about five nurses hooking me up to something. Things in both arms, bags of blood. Lots of intense, curt voices. Lots of urgency. I watched from the upper left corner of the room. This very pale woman looked back at me. I watched this woman being rushed into surgery where the doctors were ready and advancing with scalpels. She SCREAMED, "Noooooo!!!! I'M AWAKE! I'M AWAKE!"I stayed with her.
I woke up in a room covered with blood and an INSANE need to use the restroom. I was not given permission to get up. I just kept leaning on that call button and reminding them that I WAS going to relive myself. Even if it was all over their bed. Finally my doctor rushed in ... also covered with blood. I asked, "What happened to YOU?" and he responded with, "Yup. It was a geiser." I laughed, RELIEVED that I was finally going to be ok. When I was out of recovery and back in my room a nurse asked, "Did you know?" Well, yeah, I did. I knew something was really wrong. She leaned closer to me, took my hand and said, "I know. Most patients do." My fever came down to 102 and I was released. I cried when my friend left me at home. My sons' father refused to drive me to one of our son's 8th grade graduation so I missed it. Whatever was wrong wasn't fixed. None of it.
I actually taught for the next five years "crashing" every summer. BIZARRE high fevers. Hair loss. Drenching sweats. Delirious. And sooo ashamed. In 2007 I began to notice new symptoms. The sleeping pill I'd been taking since 2002 stopped working. My body began to go numb. I couldn't keep a thought in my head. The ANXIETY was nothing I had ever experienced. We're not talking "generalized" or even "situational." We're talking insane. I could have clawed drywall off the walls.
In late June I went to the doctors where I was pronounced mentally unstable and anorexic. I was eating 3k calories a day, keeping a food diary, and was being called anorexic. I grew up in NY, I know "the rules." I asked to be tested for Lyme. My doctor looked over her shoulder and laughed at me, "YOU don't have Lyme Disease!" I fired Doctor #1. This went on through about 30 more doctors until I read Dr. Ritchie Shoemaker's "Desperation Medicine" and saw myself there. I read "Mold Warriors" and saw myself THERE. I flew to MD to see him. In December of 2007 I was declared a "moldie." In January of 2008 I met with a doctor here in MI and was given the diagnoses of Chronic Fatigue Syndrome and Fibromyalgia. I lay on the couch three or four more years ... volunteering where I could, and reading everything I could get my hands on. Even if I had to reread it 1,000 times because I now have the attention span of an ADD five year old. By this time I was sporting a PICC line for IV fluids as I was on that what-the-heck weight loss program again. I was interviewed both in a local newspaper and on local TV about ME/CFS. The emails poured in and the reporters forwarded them to me. Other than the people who wanted to tell me I had demons or some sort of unrepentant sin in my life, the general consensus was that I had Lyme Disease. To prove them WRONG I called "the lab of all labs" and ordered a test kit from IGeneX. (DO NOT SETTLE FOR ANYTHING LESS!) My doctor agreed to sign the requisition form and I literally hyperventilated myself to the lab down the street and had my blood drawn while mentally rehearsing my response to all those who thought I had Lyme and were wrong.
Two weeks later my test came back positive. I do not have ME/CFS or Fibromyalgia, both of which are a collection of symptoms. I had found the mother lode of root causes ... the diagnostic black vortex. I have Lyme Disease.
Stay tuned for Part 2: 18 months of treatment so far ...