Learning to Live with Lyme...

I never thought I would find myself in this position, in some way we all see ourselves as invincible.....but that all changed for me in May 2009. I had decided not to blog about Lyme because I didn't want lyme to define me.....but as time has passed I find myself reading other lyme patients blogs just to reassure me that someday I'll remember what normal is again. Lyme is such an unforgivable foe.....it affects every organ system of the body and can migrate from one place to another from one hour to the next or from one day to the next. It all began with some mild confusion and what seemed to be panic attacks. I've always been a very emotionally stable person never waivering between good moods and bad moods. I was always happy and always focused on the good in every situation. But I found that I would feel tearful for no reason at all, I would get disoriented to the point that I was afraid that I was loosing my mind. Embarrassed at first by the symptoms.....I didn't tell anyone what was going on. I had recently started a new job and my nurses would come up and talk to me and it was a surreal out of body type of experience as if I was standing aside watching what was going on but not really being able to comprehend what was being asked.....Ohh, I did the best I could at covering up the symptoms, but then I began developing a fever, swollen and very painful joints. I worried about rheumatoid arthritis as the joint pain had affected my toe joints which was very uncommon. Then the dizzy spells began....my commute one way to work was an hour and on many days when I was the opening coordinator I would get up at 3 am to be at the surgery center by 4:30 so that I could get myself together and begin to prepare for the nurses arrival at 5 am. I would have many days that pulling over 4 or 5 times on the way to work to vomit was not uncommon, many days where the center line moved back and forth on the road and I would find myself not knowing if I was in the correct lane or not. As the lyme began to take its toll, I ended up having to resign my position (a job that I loved dearly) as my mother had been diagnosed with terminal cancer at the same time. It's hard to help people to understand the face of lyme unless you've experienced a day in it. A lyme patient can change on a dime. Great one moment and useless the next. I've went to bed on more occasions than I care to remember wandering if I would awaken the next day. Then only to be tied up in a political battle over the treatment of lyme. It seems that the CDC has its set of guidelines to treat lyme which entails a month of antibiotics and then they say your cured. I settled for this for about a year. While on the antibiotics life was at least functionable but off.....life was a living breathing hell. Most doctors steer clear of treating lyme because many doctors that treat long term lyme are being sued for doing such by insurance companies. I was sent to see a rheumatologist due to the ongoing joint pain and he immediately says its not lyme its rheumatoid arthritis. I've got the positive lyme results in my hand, know that I've been bit by a tick and know that I've been sick ever since. WHAT part of that do they not understand. I've been told that its just post lyme syndrome and that the symptoms just have to run their course.....easy for them to say when they aren't running daily fevers up to 100.6, living in excruciating joint pain, so dizzy that a drunk could walk a straighter line than I could, heart arrhythmias, nausea, vomiting, migraine type headaches and oh the inability to sleep the one thing you would like to do when you feel so bad. But yet they say this is normal....finally after much research and a God moment I was given a phone number of a lyme specialist that has actually had lyme himself. I have come to learn far more than I ever knew or wanted to know about lyme disease. I want my life back, I want to wake up in the morning and be ready to tackle a full day of work, mowing, landscaping and all the things I love to do...but instead I wake to joints that are froze up and find myself having to soak in epsom salts just to be able to move. I've tried to keep active and walk up and down the driveway.....many a time carrying a phone with me because I wasn't sure if I could make it down the driveway and back without blacking out. Lyme has though given me the ability to slow down and see whats really important in life. I now see how hurried everyone else is and the impatience of people today. I have learned that life is full of uncertainties and that each day that I have a good day is a gift from God. It's my hope that through this writing people can begin to understand the devastating toll that lyme presents and how important it is to prevent this disease. This is the card I've been dealt right now....not the card I asked for but the one that I have been given. Life today is definitely different than what I thought it would be at this time of my life but I'm learning to appreciate even the small gifts in life. Don't make an illness wake you up to the beautiful gifts of life that surround you everyday.