Thursday, May 6, 2010
My story for Paint May Lyme Green
I have sat down and started typing this many times but usually end up deleting after the first few sentences. I have a hard time opening up and sharing my story…so, please, be kind if I make a few mistakes. I am 35 and I have Lyme.
I always have known something was a bit off. Through my twenties I struggled with many emotional difficulties..meaning my emotions were a bit all over the place. I figured I was just young and had always been told I was over-emotional and too sensitive. I drank too much at times because I couldn’t keep my head clear…I did things that never settled well with me-seemed out of character-but I couldn’t remember who I was exactly. I slowly was losing touch with me. In my late twenties the migraines began. These blinding, pulsating migraines…so I started taking pills to help with the pain. The allergy problems started to creep in….so they gave me more pills for that. There was a bad bought of knee pain…so I was sent to the orthopedist. They couldn’t find anything so gave me some steroids and suggested exploratory surgery. I declined…..it finally went away. My knees would grind when I walked up the stairs, I would get tired after putting in too many work hours. I figured I was getting older…I just was slowing down…at 29.
At 31, things started happening fast. There were days I would cry…for no reason what-so-ever. I called the doctor and asked if my tear ducts could be broken….she laughed and said I was suffering from depression. After repeated attempts to explain I was not depressed, that something was wrong, she handed me a script for an anti-depressent. I didn’t take that. I went on a date and thought to myself, “I am all tingly and dizzy….I must really like this guy”. We went out a few more times….One night after a drink I was walking down the path and my legs crumpled beneath me. I shrugged it off thinking maybe I had just tripped on something. The allergies were getting worse. The doctor visits more frequent. I was coming apart at the seams and my doctor wouldn’t listen. My mother knew something was wrong.
Then the petite seizures started. I didn’t fall to the floor and shake….no….that would have been recognizable. I would get this strange sensation through my body and the world would start going gray. My hands would tremble and I wouldn’t be able to speak. I could hear people calling my name but I couldn’t respond. I would come out of it and gasp for air and heave giant sobs begging my mother to help me. She went with me to the doctors….again…are you depressed? Pregnant perhaps? Mom stepped in and they refered me to a neurologist. In the mean time….I was losing my strength. I needed my mother to help me walk to the car, my right leg was dragging, my hands were curled in fists that I couldn’t open. My vision was declining daily, I was hunched and unable to sit up, I had sharp electrical pains shooting down my legs. The simplest tasks of washing my hair or pouring a drink were unmanageable. I had difficulty chewing and swallowing my food-to the point that sometimes I would have to take the food back out of my mouth so I wouldn’t choke. My body was shutting down.
My neurologist order an MRI and a spinal tap-ASAP! Someone finally was taking this seriously. He recoginzed that my slurred speech , gray skin tone, and extreme muscle weakness was a problem. I slowly and painfully got through the test. The nerves along my spine had swelled out around my spinal column…making my Spinal Tap dangerous and painful. He called within 2 hours of the Tap…I needed to come back to his office right away. The MRI was in too. The MRI showed multiple white spots on my brain and my Cerebral Spinal Fluid had a very high white cell count. The next day my life was changed forever….I was diagnosed with Late Stage Central Nervous System Lyme with Brain Infection (Meningits/Encephalytis). I was relieved to have an answer and my doctor was afraid for my life. There was nothing humorous when I said I feel my body dying….it was.
I was then referred to an Infectious Disease doctor…I was told he was very good, “Head of the hospital”. H e saw me right away, took one look at me and replied “There is no way Lyme can make you this sick. We need to test for HIV and various other diseases.” The blood was drawn, my IV was started, round the clock care was decided upon. Keep me home and comfortable with my family. The blood tests came back….and wouldn’t you know. Clean as a whistle. The good doctor shrugged, said one month of IV antibiotics will cure me and that I would just be sick for a few years. There was nothing they could do.
We found my LLMD days later. I spent 2 ½ years being treated for Lyme, Bartonella, Babesia, and Ehrichliosis. It has been a long, torturous journey….and I do believe that hell lives right here on earth with us.
Today, I have been antibiotic free for 6 months. I still get sick. I still have some funky days. I have my life though….and I have found new friends to replace the ones that walked away from me. I have my family, my sense of humor…I can walk, talk and work from home. I still have to pace myself but I am working on that. I go to Physical Therapy for full body reconditioning…and I am getting stronger. I talk to a therapist who gently guides me away from my fear of death and illness. Who helps me understand that I will not be forever broken…that I will get to live and maybe even love again. I am learning to forgive myself and my body.
Special Thanks to my dream team: Mom, Wynn, Dr. Bock, my IV nurses, my massage therapist, Toni, Dr. Ng, my girl Cindy….and a bunch of others who helped make a miracle happen!
Update: May 6, 2010-
As many already know, I fell flat on my face. I am sick once again. I started treatment (zithro/malarone) a week ago. While I am so sadden by this....I am hopeful. I think we caught it quick and am responding really well to my medications.