When Life Gives You Lymes, Make Lyme-Aid
I was misdiagnosed with Lupus 15 years ago. 8 years ago I just happened to mention to the doc that I couldn’t even go horseback riding or camping & hiking anymore, just didn’t have the strength or energy for it. He decided to test me for Lyme because of all of the outdoor activities I enjoyed. One of the strains is true Lyme and I was one of the lucky ones that tested positive (or I’d still be misdiagnosed). Many people test negative for years until the damage is so significant that it can’t be reversed.
Unfortunately, because it went so long the damage for me is permanent and irreversible. I went from being an office manager for a car dealership, running 5 miles a day, and being extremely energetic to a person that would look at just getting ready for work as a hurdle that I struggled to jump.
This disease is often misdiagnosed as Alzheimer’s, Lou Gehrig’s disease, M.S., Rheumatoid Arthritis, Lupus, Parkinson’s, or Fibro-Myalgia.
At first, when the doc told me I had it, of course I googled it. I thought it was an easy fix with anti-biotics. WRONG! It had gone so long mistreated that I needed a picc line that went into my heart. I had to run an I.V. twice a day for those 3 years. It caused kidney problems, heart problems, and more. But you don’t just give up. I did have to make the choice to stop the antibiotics, but have learned to respect the disease and its limits.
I now have a brain stem tumor & 2 cysts in my brain that can’t be surgically removed, so now it’s a waiting game. I have a wonderful neurologist that was on the board of John Hopkins. He has only seen this in 1 other patient. He has sent me to 3 different neurosurgeons, all of them agree that surgery is not an option, and pin point radiation could destroy my respiratory, sight or hearing, so that is not an option.
The day this was discovered, my left side felt extremely weak. My infectious disease doctor admitted me to the hospital. After an MRI my doctor had to come in and explain what was happening. The man stayed at the hospital with me all day. After introducing me to the neurologist, they called in the neurosurgeons.
I felt like I had been taken to a new level in this fight. Do you give up and let it win? This was about 12 years into this and admittedly, I was tired.
My son, mother and brothers were devastated, they had always been my support, and I wasn’t certain if I could do it without their optimism.
Somehow we have managed to find the inner strength to continue functioning, while respecting the limits that this disease gives you. Yes, it does affect everyone. The fear that I just may not wake up tomorrow is real. From that I have taken each day to be a gift, each day represents another day I celebrate life.
Each morning I wake up and force myself to get out of bed. I have a cat. He’s an old man that will whine at me until I’m up and the shades are opened, the bed is made (he lays on it to look out the window), and his litter box is cleaned. There are days I would much rather just stay in bed. Those simple things can take 2 to 3 hours. On a good day, it takes about an hour to do my structured daily routine.
I’m not complaining-I’m alive, I’m happy to be watching my son grow in to a fine man, and I’m grateful for that. I visit with friends and family on good days. I have a tom tom in the car to keep me from getting lost-it’s become my independence. At times I’ll look at the road and draw a blank. Where am I? Where am I going? Tom Tom is right there to lull me back into that comfortable place of security. Before I got it, I thought I’d have to quit driving. Something I love.
There is no easy fix. There is a lot of praying.
The American Medical Association is backing the insurance companies. The medication is $300 a day. Then there is the in-home nursing care to add to the cost. Many doctors have lost their license because of the A.M.A. guidelines for Lyme Disease.
Yes, it is in Michigan, my doctor’s all asked, “Had I traveled out of the state?” No, I’ve just stayed in Michigan. It is everywhere. The patents are still going through on the info, and the government is holding them with red tape.
There are only 2 doctors in Michigan that will even take late stage Lyme patients. I was fortunate enough after making over 20 phone calls to infectious disease doctors that refused to see a late stage Lyme patient, to find one that was not only Lyme literate, but caring and conscientious.
I belong to the Lyme Disease Assoc, and they have been a wonderful form of support.
Watch for those ticks! Only 25% of the people who get the disease actually get the bulls eye rash associated with it. White mice carry them, birds carry them, dogs carry them, and of course deer carry them.
If you go outside a lot, hunting, gardening, playing with the kids-a simple check could save your lives.
There is a dvd called Under Our Skin by Andy Abrahams Wilson. It explains everything. This is the best DVD I have ever seen! I encourage people with Lyme to get the DVD. It not only taught me about the disease, but it also explains why premium care is so hard to get.
This is larger than AIDS!
The scariest part is, someone looks at you and says, “You look so healthy.” They don’t see the days in bed. The days in the hospital. They don’t see the days you can’t walk or when everything hurts so bad you just want to keep crying.
I push through a lot of it. Life’s too short!!!! I love the beach, and have recently re-discovered the outdoors. I’ve missed it, and I’ll never be frightened again, but I will proceed with caution. There are 6 strains, I only have 5-I don’t want the 6th!
So to everyone I know, to everyone I love, stay safe. Please. Use Deet products outdoors. Check each other after coming inside (especially your hair). And never be afraid-just cautious!