Wednesday, October 18, 2017

It's All Coming Back To Me

Dad found out today that he will be starting chemo again; this time for the 2 nodules behind his ribs, on his lungs.  I worked a 10 hour shift  standing in one spot on less than 5 hours of sleep.  I couldn't sleep because I spoke with my mom on the phone last night and I have to admit,  I've been pretty selfish lately.  I've been avoiding talking to my family on the phone because it stresses me out and gives me severe anxiety which disrupts my sleep for days.

My mom, dad, and sister live in Ohio and I've lived in Washington State for the past 10 years or so?? My mother and father have never come to visit.  I find myself lying to others when they ask about my family visiting because I'm too embarrassed to say that they haven't come to see me.  My sister visited once.  I don't hold it against my mom and dad for not coming out, life always seems to get in the way.   I definitely don't get back to Cleveland as often as I'd like strictly because all of my money is spent on my health and Lyme disease treatment.

My family is stressing me out because my sister married a man who ended up not being the man she thought she married.  It hurts to be so far away and to see her in such distress and unable to help her. Even though she's my older sister I always felt the need to protect her.  Heather is drop dead beautiful, really smart, and a stickler for cleanliness.  The nickname I gave her growing up was Miss America...because she was just that perfect.  I was the total opposite.  When we were kids she wouldn't let me walk on her bedroom floor barefoot because she hated feet and when I was older she always knew when I was at her house because the trail of crumbs I left behind.

 I headed home to Cleveland about 8 years ago to surprise my dad at his 60th birthday party; By the end of the weekend my sister had myself, my new boyfriend at the time Josh, and our immediate family eating  spaghetti outside on a chili October evening because she was at her crumb threshold! She was done cleaning up after the messy festivities the weekend brought.  After she had her girls things changed and the last time I was home visiting I didn't even have a funny crumb story to take with me when I left.   

Another reason I couldn't sleep was because I found out my sisters pug Olive got sick and has LYME DISEASE.  I was up all night with anxiety about how exposed my family is to this disease.  Weird anxiety surrounding ticks and Lyme happens more often than I'd like to admit.  My sister has two little girls and the thought of them getting ill makes me sick to my stomach.  I toss and I turn at night but can't keep what those tiny creatures can do to ones body and mind away.

Dad, the girls, and the newest edition, Hazel. 

With all of this. All of this stuff going on.  One thing that is kind of at bay is my own horrible Lyme disease symptoms.   My current symptoms include:

-Sjorgrens symptoms of eye dryness, ear tubs getting clogged which results in clicking while I speak.
-Laryngitis like symptoms of wheezing while lying down and losing my voice slightly by having dryness in my throat.
-Sinusitis like symptoms.  Pressure in my sinuses, headaches, watery eyes.
-MY EYES.  Redness, swelling, pain.  The norm for the last 8 years.
-TMJ.  Clicking in my jaw.
-Exhaustion but I think that's because my life is insane.

All of these symptoms are Lyme related and all of them except my eye issues are pretty new to me.
It's all from the neck up, of course the hardest places to kill the Lyme bacteria.  The Lyme has come back enough to be troublesome and I will not know the next steps to take in my treatment plan until I speak with my doctor next week.

-I have to be careful of Mast Cell Activation Syndrome triggers.  I was having loads of headaches from Chiropractic adjustments or Sinusitis or new food allergies surfacing and due to the pain I needed to take Excedrin, Tylenol or Ibuprofen.  I discovered I can't metabolize Excedrin and Ibuprofen; they are a triggers for Mast Cell and give me muscle pain in my upper back.  These are things I have to constantly look out for!

Another thing I have to look out for are food allergies.  In the last few months I've developed new ones to peanuts and rice.  I haven't counted, but I'm reaching twenty some food allergies at this point.  It's insane and challenging.  Currently doing LDA injections so hopefully that will help.

Overall, things could be way worse.  My brain function is great so that's awesome!  My symptoms are sticking to the neck and up.  Which is good.  Not great and not over but getting there.  I can't be cured but I can be controlled and I'm getting things under control slowly but surely ;)

Everything I've done for myself and for others, it's all coming back to me.
This ones for the Lymies I'm so happy to help you.

Thank you for reading


  1. I thought John Musarra was a scumbag and mental midget way back at Harding Middle School. Good riddance that the John Musarra garbage has been kicked to the curb.

    Go Hawks!

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