In Your Own Words

October 21, 2011

Dear Andrea,

After you died, I found a lot of stuff you wrote.  My Space, Twitter, Facebook, files on your computer.  I came across this in the days right after your death,and again the other day. 

Last week, while I was at the Writer’s Refuge on Whidbey, I brought a box of my journals and some of the files you kept. In it, I found the medical records from your days with Military Sealift Command.  There, in the file, were the test results you got back in January 2005.  The ones that said you had Lyme disease.  I am trying to reconcile this with the test results from your autopsy saying there was no evidence of Lyme disease.  What happened between January 2005 and September 2009?  I only know I lost a daughter.

………………………………..

23 March 2007

“Ticked Off”

When you’re called in to a doctor’s office at 23, there’s not much that runs through your mind, other than “I’m dying.” That’s what I thought; my life was over, nothing to will away but a suitcase full of shoes and the training t-shirt from the marathon I missed out on. Amidst the single anxious tear, I chuckled when I was told I had Lyme Disease, a couple of weeks of antibiotics, and I was in the clear – no big deal, right? Wrong. My career as a merchant mariner is now over, I moved across the country to Virginia Beach, and I have a permanent port implanted in my chest to administer IV antibiotics daily. Now 25, I live one breath at a time – sometimes holding it to take in the fading moment.

Coming off of vacation in January of 2005, I returned to Virginia (from the Pacific Northwest) to report back to work as an able bodied sea woman at Military Sealift Command. After slicing my thumb open, and losing feeling in my hand, I wound up in a shoebox of a neurologist’s office - to get a diagnosis in a hurry. Not wanting to accept a diagnosis of Carpal Tunnel Syndrome (a painful, progressive condition caused by compression of a key nerve in the wrist), I pressed for more testing. The doctor mentioned there was a small chance that I had Lupus (a chronic autoimmune disease in which the immune system, for unknown reasons, becomes hyperactive and attacks normal tissue), and sent me for a complete blood workup and nerve conduction studies. Within a week, I got a call that the neurologist needed to speak with me.

I remember the fear like it was yesterday, I clutched on to my then my boy friend, Scott’s hand as we walked into her office together. It seemed like forever, as she read through the list of negative results, before I interrupted her for an actual diagnosis. Sometimes, I wish I’d been more patient, just so I could have a couple more seconds of health. When she said that the Lyme titer came back positive, I started to cry. I feel foolish now saying it, but my only thought was – “Irene from MTV’s Real World: Seattle had Lyme Disease and left the show, but there wasn’t anything wrong with her.” I have to take a moment to apologize to Irene, because, two years later, I know that’s not the case.

When I started antibiotics to cure the disease, a barrage of new symptoms appeared. I was bedridden, from the first dose, with severe headaches and vomiting, and I couldn’t stand the light peeking through the hotel curtains.  A couple of mornings later, I couldn’t feel the right side of my face. I was petrified. That “I’m dying” thought returned, and I drove myself to the hospital. After various testing, I was discharged, and heard that “it’s just the Lyme Disease,” and “it’ll get better.” Unfortunately, that wasn’t the case, I returned to the ER two days later, and was diagnosed with Lyme Meningitis and Encephalitis. I was told, before I could think it, that I was going to die.

Being quarantined in an unfamiliar hospital, with eight states separating you from family and friends, is scary. I may have actually died, had Scott and his mother not been there. I was warned that many doctors would examine me, because they’d never seen someone that looked so healthy, but was so sick, and had “white coats” in and out of my hospital room for eighteen hours a day. No one could figure out how to make me better, though they had no problems figuring out that I was getting worse. When the Meningitis and Encephalitis were thought to be under control, I was discharged with a catheter that ran from my bicep to my heart, which I had to push antibiotics through every couple of hours. (A PICC line) With six weeks of IV antibiotics to look forward to, I checked out of my hotel, and returned home.

After six weeks of calling my doctor every day, demanding that the damn line be taken out of my arm, my time on IV antibiotics was up, and I could return to work, and take a shower without wrapping myself in saran wrap (the IV couldn’t get wet). For the first time in weeks, I was excited, and, almost two months after the initial diagnosis, I was told that I was done with Lyme Disease. Unfortunately, no one told the Lyme.

I returned to work in May of 2005, after the Lyme Disease broke me down physically and mentally. In June, I was sent to a tanker in the Middle East and, though I wasn’t feeling like myself, I was happy. After all – I had dreams of becoming a captain, and absolutely nothing was going to stand in my way. I’d told a doctor that said my sailing career was over that I was the only person that could make that determination.

To stay on the ship, and keep my doctors happy, I had checkups and MRIs in Singapore, and, when I started to get really sick again (in October), I went to the hospital in Japan, where I determined that I couldn’t keep my back turned on my declining health forever, and it was time to leave. 

With little time to talk, Scott and I arranged to get an apartment together in Virginia Beach, where I’d still be close to work, and one of the best Lyme literate doctors in the world (I didn’t even know such a thing existed until I visited an online Lyme Support Group). We also picked out a dog online, and I made arrangements to have her sent from Missouri to my parent’s house, in Washington state, where I was packing for the move.

Towards the end of October, 2005, Sadie (our furry baby) and I moved from Washington to Virginia Beach, where Scott and I picked out an apartment. We quickly set up shop and I got in touch with a nearby Lyme doctor (generally these doctors specialize in internal medicine or infectious diseases, and have done extensive research on tick borne diseases such as Lyme), and was put on her waiting list. I waited patiently for five months, as my health declined, and eventually, I was unable to dress myself in the morning. My original infectious disease specialist, who’d said that the Lyme Disease was gone, sent me to specialist after specialist to treat each symptom individually. At these “specialists,” I was always given a random diagnosis, whose symptoms hardly matched mine. Each of the visits left me feeling worse, and like I was making things up. After all, could one little bug, do this much to me?

It was after I was told I had Fibromyalgia (a chronic syndrome characterized by muscle, joint, or bone pain, fatigue, and a wide range of other symptoms. Many will be diagnosed with Fibromyalgia before Lyme Disease is apparent in tests), that I broke down in tears, and called my “last resort” doctor in Charlotte, North Carolina. Coincidentally, he had an appointment for the next week available, and Scott, Sadie, and I made the seven hour drive down. Though he had a very scary and intense treatment protocol, he was all I had left, and the only hope for a restored life.

My first appointment with him, in March of 2006, was nearly three hours long, and cost me 27 vials of blood. During this appointment, with my past in mind, we made arrangements for another round of IV antibiotics, to begin six weeks later, at my next appointment. Scott and I yo-yoed back and forth from Virginia Beach to Charlotte with Sadie every other week from April to July, when I entered remission.

Remission lasted precisely three months, and, after oral medications failed, I was put back on IV medications two days before Christmas. In the Lyme community, there’s a phrase “one tick, many diseases.” This phrase rang true when I was clinically diagnosed with two other tick-borne diseases that are suspected to be hindering my recovery. This round, I’ve been on IV’s since December 23, 2006, and my PICC line had to be unexpectedly removed two weeks ago. Last week, I had surgery to implant a subcutaneous catheter (medi-port) in my chest, which will be accessed on weekdays for IV medications. While they were cutting my chest open, I learned that sedation no longer works on me, a neurological side effect of the Lyme Disease. Lying on the table, crying and screaming in pain, my whole experience with Lyme Disease was summed up. The anesthesiologist didn’t believe that I could feel the doctor slicing me up and jamming a tube through my veins, just as many doctors watch me walk through their doors in agonizing pain, and don’t believe I am sick.

The last two years have matured me. I know not to take things for granted, and that things can always be worse. I’ve gone through stages of denial and acceptance, and have settled between the two with these three rules: 1. this is not “my” disease. I did not choose it, it is not welcome, and it can go away. 2. Before making life altering decisions, research (and lots of it) is needed. If I had read more about Lyme Disease, I would have known that I needed to be on antibiotics longer during the first round. 3. “Denial” is a river in Egypt, not a proper state of mind. Without accepting things as they come, it is nearly impossible to get over them.

*** I now run SEVA Lyme, a Hampton Roads Lyme Disease Support Group that focuses on Lyme Disease activism and awareness. Many people are affected by this debilitating disease, and there aren’t enough doctors who know how to treat it.

…………………………………………….

And I am not 100% convinced the doctors you had knew how to treat it either.  Treatments ranged from high doses of iv antibiotics to a suggestion that you have your aura read.  What am I, as your mother, supposed to make of all of that?  Except that none of the doctors really knew anything. 

And they still don’t.  Medical politics.  You were one big experiment to them. Cash up front.  

You were my child. 

I feel the eye of a hurricane building inside of me.  Storm clouds, high winds, rain spinning out, gaining force traveling across open waters. 

I hope it hits land soon.

                                    Love,

                                    Mom