I became violently ill, extremely weakened and no longer had the balance to even walk. I crawled to get to the bathroom and could only wash off in the bathtub. The EMS calls became more and more frequent. One night, I remembered being in the ambulance and clutching my husband’s hand as tightly as I could, crying and just repeatedly saying “Don’t Let Me Die.” Once again, I was hospitalized. I was evaluated by a Neurologist, and then diagnosed with probable Lyme disease, as one test had come back positive, although another marker was negative. I was thrilled to have a more established diagnosis and firmly believed I would be on the road to recovery. Little did I know! At the time, I was so grateful towards the doctor and began crediting him for basically saving my life.
I was referred to who was supposed to be a fabulous internist in NYC. I went in for a consultation, and I was told “I know you are really sick, but I just do not know with what”. We awaited the Lyme disease test reports, and it was decided that it was conceivable for me to have Lyme disease. I was referred to another Neurologist who did extensive, highly expensive, extremely painful muscle and neuropathy testing. I could not complete the testing on both sides of my body, as it was just too painful.
I was once again hospitalized, this time in NYC in the frigid, cold dead of winter seemingly hundreds of miles away from my family. I was admitted over the weekend and began IV doxycycline for the supposed Lyme disease diagnosis. The burning pain was indescribable. I remember having to go to the bathroom at one point and calling for the nurse to disconnect the IV. I headed to the bathroom and noticed that drops of blood were forming a trail as I took each forward footstep. I rushed back to my bed and called for the nurse to take a look at the IV. I was extremely squeamish and almost wanted to pass out, as I watched my blood splatter onto to the floor beneath me and leaving traces of red markings all over my shoes. It turned out that my IV was not completely locked and came undone from the tubing. I underwent a spinal tap during that hospital stay. I had arranged for my husband to be present at the time, but there was a change in scheduling. The procedure itself was not terrible but the aftermath instead. My high school girlfriend LR came up to the hospital to visit and tried to comfort me in any way she could. By the time she arrived, I was in pain, as I was sitting on a bed pan having to go to the bathroom but not being able to push the urine out. After several hours, I was finally able to relieve myself. During my stay, I was transferred from a cozy, warm, comfortable room to a freezing cold room into a bed next to the window. It turned out that the heat was not working properly in my new room despite several late night attempts to try to correct the problem. I was covered from head to toe with 5 blankets and still could not get warm. I finally fell asleep in the wee hours of the morning only to wake up in a pool of sweat. Everything was soaked. That night was almost unbearable. At the point of discharge, I was in really bad shape. I rode home in the back seat of the car with several chucks wrapped around me in case I had to go to the bathroom, and we were unable to make a restroom stop.
My son Jared, who was a first grader at the time, was worried about how I was going to travel with all the medical documentation and medical supplies that were beginning to accumulate. He presented me with his Spiderman backpack to ensure I would have a safe place to transport my growing number of records and medications. I was so deeply moved. To this day, with every continued round I make, the Spiderman backpack accompanies me to each and every doctor visit. Talk about a momentous occasion!
I visited with my new internist 2-3 times a week, none of which were covered by insurance. It’s truly amazing how quickly you can deplete your life savings with the blink of an eye. I was poked and pricked at each visit to undergo blood tests that would ultimately fill hundreds of tubes. I guess I was becoming more accustomed to it and always tried to think happy thoughts. Somehow or another, my mind always escaped to Disney World, a trip we had taken in December 2005. I only hoped and prayed to bring my daughter back to Disney World, as she was really too young to really appreciate the sights at that time, and my son back to Universal Studios.
I began IVIG treatments. That was the beginning of what would be grueling treatments for me, as I am horrific when it comes to IV’s, and my arms were pretty beaten up by this time. The phlebotomists would often tell me that I looked like a junkie despite the fact that these medical necessities were the only occasions that any needle entered my body. Nurses S and S were great, but nevertheless, the whole process was draining. My mother came to each home infusion, and we got through the 6-8 hour time blocks by renting movies from Blockbuster and sharing personal stories. The March treatment was abbreviated, so it was manageable. My nurse and I shared stories about the weird sensations we felt in our bodies. He could relate to what I was talking about, because he had a bout with Lyme disease. It would feel as though I had bugs crawling through my body, and I would refer to the sensations as creepy crawlies.
I continued with the IVIG treatments, this month lasting for 5 days. I hated starting the IV’s, and more so, I hated having to leave the line in for several days and sleep with it in. I believe during the month of April, my IV line backed up, and the nurse was not scheduled to come until late morning or early afternoon. At about 8:15 AM, I anxiously waited by the front door to ask my neighbor whose husband was an ER doctor to please see if he could come to flush out my line, as she walked her child to the bus stop. She said he couldn’t, as he worked the overnight shift, was sleeping, and she did not want to wake him. I was stunned and speechless all at once.
It became more and more difficult to start an IV, as the veins kept collapsing on the right arm. We finally and excitedly made it through the treatments.
Written by Tara Notrica