it's been a while- update

Hey! I hope you're all doing well and are slaughtering some bugs with great success!

I've been off treatment for the last month since my last episode with the drug reaction. I finished my course of steroids recently. I have infusion appointments tomorrow and the next day to start Flagyl and azithromycin. To say I'm nervous is an understatement considering my skin still isn't completely healed.

A lot of symptoms have poured back in. My suicide headaches are back, my joints hurt, I'm fatigued and irritable, I'm hallucinating again, the anxiety is out of control, my oxygen drops and my heart is struggling, the rashes.....etc. I haven't been myself the last few weeks. Plus my fiance injured himself so 2 days after I got out of the hospital with chemical like burns covering my entire body I worked 11 hour days with his crew. I haven't had the help I'm used to with my young son. Or the house or the animals or anything. I've been on my own in a very real sense. It amazes me how far I can push myself under these literally dire circumstances.

Yesterday I had to go in for a declotting on my picc. That was quite the experience. But they fixed it no problem. I started crying. Like a baby. The entire drive in I had my head in my hands and couldn't breath. This isn't normal air hunger. I turn purple and my numbers drop. My heart is compromised during these episodes as well. I thought I was going to die. I texted my fiance to tell my son how much I love him because I was worried I may not survive to see them again. I've been living like this since June or July.

My blood pressure was low as well as my oxygen. My picc nurses have seen this before so they weren't shocked. They are all really nice. But nice doesn't make me feel safe from mortality. So ya. I lost it. It had been building for a few months and yesterday was my breaking point. I'm used up in the strength department. I was with my mother in law. I think part of it was the obvious culmination of the recent events but I was away from my son and could let my guard down. I felt embarrassed. I felt weak. I think my nurse was in shock because she's used of me having "these bugs picked the wrong host" attitude.

So. I'm exhausted. I'm in pain. My mind is reeling. I've lost sight of my optimism for the moment and I'm actually OK with it. It takes a lot of energy to be sick AND happy as I'm sure only you brave souls are capable of understanding. I'm letting myself be a little sad and beat up. I've earned it. I've had the crap beat of me wveey.step of the way since my diagnosis.

So please send me some good vibes and good cheer to get through my new infusions. I'm incredibly nervous. I hope you're all doing well :) thanks for being here

Oh IHL, I have thought of you often and hopped you were doing well. Traveler keeps us updated, so I knew you were struggling. I honestly wish there was some way I could help. I know I am just some words on a forum, but I really mean what I said. I would help you if I could. If there is anything, please let me know!!!

You have been thru so much and I will pray for you, that you can start healing now. Find peace and comfort! You don't deserve the pain and struggle you have been thru. I believe you that there is peace in accepting what is.

Here are the good vibes~~~~~~~~~~~~~~~

Feel better and hug your baby.

DB

Sweet IHL~
Been thinking about u. Your tears cannot be confused with weakness!

(As a odd aside, I was just reading about tears containing something called lysozymes which are antibacterial & antimacrobial. It's been cited that these lysozyme molecules could be used in antimalarials. Ironic, eh?)

So cry away, as your body needs to release these tears to help heal!
I, too, wish there was some way to help you. In the interim, I will send love thru this electronic keyboard, in hopes of it carrying across the miles, & thus being absorbed on your end. (((hugs)))

Sending thoughts and prayers your way IHL. Keep hanging in there, it is so darn mentally exhausting trying to make it through setbacks and physical pain, etc. I hope you feel better soon.

Gosh IHL, it stinks that you are having to go through all of that. I hope that you find it within you to keep going and to not give up. I am sure that your son and many around you need you to be strong. Tell yourself that you are bigger than these bugs so you can kick their butt!

A huge hug and all the best to you.

IHL, I'm new but boy is your story a test of persistence. You cannot imagine how much your son needs you, so I am glad you are pushing on. You make me feel like a wimp. I cry about every other day. Actually, the last couple of times it made me feel better. I get tired of being strong and together. I am learning a lot from lyme about me and about others.
Here's hoping your next treatment is easy peasy lemon squeezy

~Annette