Where I Am Now

Its just under one month shy of when my world completely changed. January 2014 was a time I will never forget.  I had gotten the flu, my great aunt was in the hospital dying, I was still misdiagnosed with multiple sclerosis (injecting myself daily) and I had never been more sick in my life.  Little did I know things would only get worse.

I left work on January 2nd, 2014 to rush to my great aunt’s side, she died the following morning.  I had taken off of work for a week to deal with funeral planning and the funeral itself with some time to grieve.  She had been like a grandmother to me.  She was also the last of 12 children, the end of an era.  Following the funeral, I began to crash hard.

When I left work on the 2nd, I had every expectation of returning to work, doing a job I very much loved.  I went out of work on the Family Medical Leave Act (FMLA) because my own health had declined so much and so rapidly.  I was dying but I didn’t know it.

So began my fight against time, I had 12 weeks to figure out what was wrong with me and to fix it.  Doctor after doctor.  Diagnosis after diagnosis.  I was running out of time both at work and in life. 

Forward to March of 2014, I found a provider who believed I had Lyme (which I thought I’d had for years) and co infections (which I never heard of.) A month later the answer to my prayers came with a confirmed Lyme diagnosis with 3 co infections (Babesia, Bartonella and Mycoplasma.) With no medical intervention I would have been dead in 10-12 months. 

Since then its been a long, hard and windy road.  I have fought the best I know how to,  by perseverance.  This morning a very close friend told me that I was her hero.  I was completely shocked, amazed and humbled by those words.  And so here I sit reflecting on the last nearly 3 years.  I am a completely different person than I was the day I walked out of work for the last time.  Life changes in a moment.  We never know when our last goodbye will come.  We never know when we will be forever changed and we often never know when we will change someone else’s life. 

My diseases have taken so much from me…family, friends, the ability to work, the ability to take care of myself (for a long time.) I could go on and on about what I have lost and what I miss about my “old” life but I choose to see what this disease has given me and allowed me to become which is worth so much more than I have lost.  I have forged friendships that are unbreakable.  I have gotten back so much of the humanity that I had lost.  I’ve learned to be humble and kind and caring.  This year I think I’ve said “Merry Christmas” to more people than I have in the last 5 years combined.  I want to be the light in this dark world.  I want to shine. 

  Hero is a strong word and even though I still can’t let myself say it about myself, I feel honored to have impacted someone’s life so much.  That was my mission from day one when I started writing…I wanted to help someone, inspire someone, change someone for the good and today I feel as though that finally happened.

Three years have changed me and changed my life completely.  I feel more connected to the world around me, more at peace than I ever have, more comfortable in who I am as a person.  I’m less jaded, softer, kinder, more tolerant (though I still struggle with patience.)

Its been a long three years with more ups and downs than I could have ever anticipated.  Treatment was only supposed to be 18 months but the set backs I’ve had have caused treatment to only continue.  But I think I can finally see some light at the end of tunnel.  Dosing remains difficult for me at time but my highs are higher than they have been in years, the lows not nearly as low as they once were.  I continue to fight and even when I am considered to be in “remission” I know this is a battle I will continue to fight for the rest of my life.  I try not to think about the forever part of it because its overwhelming.  I live one day at at time.  I measure that day on how I feel.  Some days are still captured by the disease, days where I am stuck in bed and feel useless.  But I have days where I feel like I am fairly “normal” again.  Its all about the spoons.  Some days I have more spoons than others.  I’m still pretty bad with borrowing spoons from one day to get through the current day to do the things I want to do.  Some times it leaves me near crippled but I just try to smile through it all.  I want to be the light and not the darkness anymore and the only way I can figure to do that is to smile as much as I can.  Please don’t misunderstand, there are still days where I lay in bed with the blankets pulled up over my head just counting the minutes as they pass, when I’m too sick to do anything and I let the feeling wash over me, I bathe in it and then when I am able to I pick myself back up and move on.  I’ve learned to let go of the resentments and what ifs and the poor pity mes (with rare exception.) Its the only choice I have in all this, my attitude as to how I handle this. 

I’ve talked to a few people over the last couple of days and told them the “hero” story.  My mom put it best, I think.  She told me that if she was in the same situation she would have gotten through it because she had to but she knows she wouldn’t have handled it as well as I have, reaching out to people, having a positive outlook and not only surviving but conquering.  Hearing my mom say that was a real eye opener to me.  Not just as a compliment but as a testament to how much I’ve changed.  I know the “old” me wouldn’t have been as positive. 

Everything happens for a reason (or so they say.) I think I was meant to have my diseases to understand people and myself better.  I think that it was God’s way of teaching me a lesson, albeit it very hard way.  All I can do now it hope that I’ve learned the right lesson, that I’ve made my God proud and that I make those around me proud and to give a little light to the rest of the world.

This entry was posted in alone, Amen, Babesia, Babesiosis, bartonella, being ok, Being prepared, Blessed, chronic illness, chronic pain, Coinfections, Comfort, Death, Depraved, dreams come true, Dying, emotional, emotions, faking being ok, Fighter, fighting back, finding your way, Freaks, getting better, getting worse, go your own way, growing, growing stronger, healing, healing yourself, helping yourself, highs and lows, I am the fire, I will get better!, illness, Immune problems, Immune system, Its not your fault, Journey, let go and let god, LLMD, Lyme, lyme disease, lyme's disease, Medical, Mycoplasma, No Stamina, oral medication, reflection, religion, spiritual, spoon theory, spoons, TBD, TBDs, Team Lymestorm, thankful, the spoon theory, tickborne, tickborne diseases, ticks, Treatment, Uncategorized. Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s