Tick Girl

 Tick girl:   Ten Years Ago

Ten years ago, this month I realised something wasn't quite right.   I was walking on my parents farm and my hands started going numb.   I kept dropping things.  They swelled up like baseball mitts.   I remember walking with my dog and felt like someone was squeezing my feet with a vice.   I wasn't sure what was happening to me; however,  a decade later I now realise that was the last day I had where I felt quote 'normal'.

I started getting severe headaches that didn't go away, earaches, unrelenting sore throats and strange nerve spasms in my back and in various places in my body.   

I went to several doctors and heard the same story.   That could be anything.   Wait it out.  After going to multiple physicians and finally a rheumatologist who thought that I had an autoimmune disorder.   I was tested for Lupus, MS, rheumatoid arthritis, and a slew of other illnesses.   I had MRI's, neurological tests consisting of sticking long needles up and down my spine and into my hands and feet.   I have a high pain tolerance, but I think you could hear my screaming from down the hall.    I was then given the diagnosis of Fibromyalgia.   Which interestingly enough, I did my graduate thesis on ten years before that, not knowing I was going to be diagnosed with it years later.

I continued feeling ill for a year and a half.   Finally, a specialist I had, ordered the Western Blot Test in November of 2011.   One month later I got a phone call..   It's amazing how a phone call, a conversation, a diagnosis in just a few seconds can change your life forever.   I was told "you have Lyme disease and a Co-infection called mycoplasma.   I sat on this for a few hours, relieved that I finally had an answer for what what happening to me.   I was told 2-3 years of treatment and I would be okay,   Ten years later, I can tell you that was optimistic at best. 

I used to have a good sense of humor, friends, a good job, owned my own house.   Ten years later I have progressively lost all of those things and don't really recognise myself or my behavior anymore.  I describe it almost like Invasion of the Body Snatchers.  Its like you have an alien inside of you that is your constant companion and takes over your physical and psychological health.

I now have not only Lyme and Mycoplasma, but Babesia Duncani (similar to malaria), Bartonella, and Lyme induced Mono or Epstein Barr Virus.   I progressively treated each thing, which are called Co-infections.. for two to three years and got rid of each one.    The treatments had side effects called 'herxing'.   Nausea, pain, severe fatigue and more side effects that you can count.  40 plus meds a day, my day consists of when I take my next dose and will I be able to function that day or leave the house.

A year ago after my constant lab workups, I found out everything had come back.    I have used various treatments including antibiotics, tinctures, herbal supplements.  I have been hospitalized and have three times a week IV treatments three hours, three days a week.   I don't think I've had more than three days that I have felt well in 10 years.   I don't remember that last day..   the last day where I felt normal.   The last day where I felt healthy.   The last day I didn't feel discomfort or worry.

I try to take things day by day.   There are some days I can't get out of bed.  There are some days I have anxiety and panic attacks that are so bad I stay home to avoid being around people or noises that now bother me.  

When I am home, I want to be outside.   When I am out, I want to be home.   I feel very 'unsettled' is the best way to describe it..a majority of the time.  It is a hard feeling to manage.  No-one understand unless they have this.   My parents don't.   My friends one by one disappeared not understanding or wanting to be around someone who couldn't do things anymore and didn't want to hear about it.   I stopped talking about it, because I realized noone cared.   So I decided to start writing down my feelings just to help me process things.  

I'm sorry if this comes of as complaining or too negative.  It is simply the life of a woman with Lyme disease.  I didn't ask for it.  There is no cure for it.   And I feel like my life has been snatched from me.   Sometimes I wonder if I have a future or if this is what life will be like for me for the rest of whatever amount of time I have left.   

It is depressing and isolating.  I would not wish this on my worst enemy.   One of my healthy friends said to me that it made her realise how lucky she is, despite having her own problems, that she and her family are healthy.  I don't remember what that feels like, but I will continue holding out hope that someday there will be a cure, someday I'll feel better, someday I will be 'normal' again.    If not, this is my new reality.  I have made a bucket list of things I want to do.  Covid has interrupted many of those things like wanting to travel to some exotic location or move across the country.   

I have a dog that makes me smile.   I take pleasure in small things like going to the park to walk him for an hour.  It's the little things that make me forget if only for a few moments that I'm sick.  I've started taking pictures, doing yoga when I can and taking small steps to find a few moments of contentedness.  If that's even a word.  

Don't take anything for granted, especially your health.  Live life fully and honestly.  Try to find your own sense of peace.

Melissa K. 😌