My Open Letter to Doctors, Nurses and all Health Agencies about Lyme

I don't know if this letter will be given much credit, I am just an average individual who has been battling Chronic Lyme for 4 years.  ...

Thursday, February 16, 2017

Lost in Lonely Lyme

This is not how it was supposed to go.  I was very social, loved being out, active and involved.  I was incredibly active, competitive and adventurous.  I managed 50 properties and parks, taught health and fitness, loved the outdoors and inspiring others to do the same.  So how is it that I am sitting bundled inside on a snowy day, grateful for my puppy companion, trying desperately to figure out how I got here.  Is it possible that a one second move, an improper removal of a tick,  derailed my whole life, the existence of who I thought I was and who I was going to become? I dare say, it was.

I don't know this person, who just four short years ago was doing a 300km hike, in record time, by herself, training for an ironman and always rallying her friends to join her in something active and outdoors.  That person is so non-existent now, that it is almost hard to believe she ever existed.

That person now, has used up most of her savings on treatments, has no income, tries desperately to make plans that usually she can't follow through with, has a Doctor in the US that will only treat Lyme, a GP that won't treat lyme and another doctor, that won't treat Lyme, nor someone without a GP and an insurance company that denied her claim because her diagnosis' don't match and a government that for 3 years has promised to do something about this epidemic, but has done nothing. Lost and lonely doesn't begin to describe how that makes someone feel.

I never imagined life in a country where a major epidemic that I suffered from would be ignored, or a doctor who would say "I don't want to hear about it", or decades of hard work and commitment that would pay into a benefits plan that would deny with one quick stroke.  All of those simple promises that were made to me growing up in a privileged country have been denied.  This is not how it was supposed to go.  This is not how I was promised my life would be, not even close.

So I sit here fighting this lonely disease that stops me from doing all the active things I love to do, that keeps me from friends and social activities that I enjoy and makes me feel abandoned by a system that I believed in and yet, I feel blessed.    I have family who have stepped up and helped me along the way.  I have friends who have changed their schedules and accommodated my needs at every chance.  I have co-workers that check in and remind me there is a place when I am better.  Local businesses have offered assistance in amazing ways and community groups that have funded and helped in unusual ways.

As I sit here feeling abandoned and alone I realize I am anything but.  I am blessed. I am not alone. Somehow, at the other end of this will emerge me, the real me.  The new me that will from now on, will believe in my instincts instead of only the professionals that so badly let me down.  The me that now knows I don't live in a country with equal rights and care for all.  The me that will fight for a cause knowing that justice doesn't always prevail.  And the me, that will find a way to help others, much like me, who are lost and lonely.  I look forward to meeting that version of me when I get to the other end of this battle.  Until then, I will have to believe in all of that or I will become bitter and hurt by the system that let me down.

I have to believe there is a greater purpose in all of this. I have to believe that we deserve better. I have to believe justice will eventually prevail. I have to believe that someone with influence will soon listen.  I have to believe action will take place sooner than later.  I have to believe that this insane reality will end someday and solutions will be available.  I have to believe that someday, someone will admit they wronged us.  I have to believe it will all sort itself out, because until then I am lost and lonely in Lyme with only my blessings and my belief.

Sunday, February 12, 2017

My Wish, my one and only wish - for Lyme

There is so much wrong with Lyme disease, the testing, the medical system, the insurance benefits, the symptoms, the treatment, the understanding, the financial burden and the list goes on. There is so much wrong that I feel overwhelmed with all that has to happen to find help for (likely) millions worldwide.  And yet nothing, almost nothing is happening.  
I have spent, days, weeks and months through my battle with this disease trying very hard to figure out where and how to concentrate my efforts to find help for those needlessly suffering as I have.  A fight that would not be so hard if people understood this disease better, if doctors weren't being charged after treating appropriately, if the regulatory bodies didn't restrict the appropriate treatment for this illness, if researchers could get the science out showing most tests and treatments are inadequate, if insurance didn't decline those suffering, if we didn't have to travel to another country for treatment, if we didn't have to remortgage or use our savings to find health, if people could truly understand what it feels like to suffer from Lyme.  And that's when I realized what had to happen to solve it all.  
If I had one wish and could only be granted one wish for Lyme patients, it would be  this.  It would be that people could see, feel and understand the symptoms of Lyme. Because if they could then:

- My husband could have felt the pain in my joints and muscles, because he would have not let me convince myself, it was from a workout or lack of
- My doctor would have felt how hard I had to work to breath to just walk up my stairs when a year before I had completed an ironman 
- My coworkers would have not passed off my balance, memory and comprehension issues as me rushing, overworked and too busy 
- The cardiologist would not have accepted my maximum 9 mins of stress testing as normal, seeing I could run, bike and swim for 7 hours without fatigue before. 
- The health units would not claim that a tick had to be attached for more than 24 hours, when the Lyme, Babesia and Bartonella entered my body after 8 hours, because I unsuccessfully detached it cleanly. 
- My friends who saw my shaking, twitches and weird illnesses could have known how frequent they were and not let me dismiss them 
- I could have realized how slowly I had declined over 3 years and not made excuses for the 50 plus symptoms I had acquired 
- The list of diagnostic symptoms for Lyme can be realized years before they are so extreme, you can no longer deny what is going on 
- The insurance companies could wake up in my body and know what it is like to not be able to get out of bed easily and need to hold railings and the walls to be sure your body can support you 
- Anyone I encountered could feel a dose of the extreme fatigue, that is unlike anything I have experienced in an ultramarathon, endurance race or the hardest workout, and to know the illness, nausea, dizziness and weakness that follow rest, only making it worse 
- Every specialist could feel the appropriate symptoms that fall short of being detected by the diagnostic testing 
- False positive, false negative and useless testing would be unnecessary 
- Every employee could feel what it is like for their staff to work with so many things wrong and know they are giving all they have to remain committed and faithful 
And if my one wish that others could see, feel and understand the symptoms of Lyme, is too much, then I could make it less.  It would be that I (and other Lyme sufferers) could realize how bad symptoms are before its too late...the symptoms that develop so slowly over time, I was able to dismiss them, to believe the multitude of doctors and specialists who said I was fine and allow me to blame myself for everything that was going wrong.  And in that, to know the longer you deny this disease the harder it is to battle it.  Oh how hard the battle is.

So if I break my wish down into tiny actions, it becomes this: 
- share my mistakes 
- share what is wrong with the system 
- share solutions  
and most of all share hope...
My hope that one day everyone will understand Lyme and not because they have experienced it.  But because they know how it ruins lives, how valid it is and how important it is to believe, diagnose and treat immediately.