Friday, August 28, 2015

One Year Ago Today

*The last two and a half weeks, Lyme has been kicking my ass, it all started with the side effects of Rifampin. That drug knocked me on my ass, I had to stop taking it due to the extreme fatigue and nauseousness.  Food was hard to tolerate and it literally gave me narcolepsy.  During times like these, I try to remember all my symptoms that have dissipated, and the moments when I feel great. A year ago, I was at my absolute worst, so scared, confused, and sick.  Today, there is progress and I'm fighting hard to regain my health.  I want to get better, in every way :)

One year ago today, I left work in tears because my eyes had swollen yet again.   One year ago today, I would find myself curled up in a ball on the floor in hysterics.  What is wrong with me?!  I couldn't take it anymore.

This was my rock bottom, not months later when my world fell apart.  My rock bottom was when this illness was at it's absolute worst.  Yet the people closest to me were in denial.  I was dying, every part of me had been taken away.  I traveled to Maine a year ago, from Washington state.  Travel was always ridiculously hard for me to do.  Making travel plans, immediately put me in a state of anxiety, because I knew half the battle would be getting out the door.  Airplanes hurt my joints and made me retain water for days.  I felt horrible while visiting Maine, I did everything I could to try to be normal, but normal was something I just couldn't be anymore.  I ended up in tears on the last day, hours from having to go back to the airport, on 3 hours of sleep.  I just couldn't bare the thought of what the next 24 hours of travel would look like.  My body was shutting down and I didn't think I could physically make it back to WA.  I wanted to be left in the hotel room for dead.

One year ago today, my brain wouldn't allow me to write or read.  Going outside caused horrible allergies, and eating food would result in swollen eyes, stomach pain, and rashes all over my body. Work became difficult, because I found myself slurring my speech, losing my train of thought, and forgetting simple things I'd known for years prior.   It was hard to see, because my eyes felt like they constantly had dirt in them and my vision would come and go in blurs.  New and scary symptoms began appearing daily, preventing me from socializing.  Overall, I was in so much physical pain, and mental distress, I could barely leave the house.  If you go back to this blog below, you can review my symptom list.  The list had reached it's maximum and my body had shut down. 

Looking back to a year ago, a lot has changed, in fact my entire life has changed.  Parts of it I don't even remember.  Symptom wise, there has been a great amount of change.  Here are some things that have improved from a year ago, when I was at my absolute worst.

Last year my skin looked like this:

I had melasma and brown spots all over it, I hated it, it made me very self conscious and gave me anxiety in public.

Today it looks like this:

This was not achieved by Hydroquinone, or any prescription lightening products used to erase dark sun spots.  This was achieved by killing Lyme bacteria.  So hey, dermatologists out there, maybe try to find the source of the problem, and not try to tell me to throw some shitty cream on my face.  I knew even going to visit mine was going to be a joke.

I had a hugely painful, swollen joint that came after eating dinner one night.

I was told I had the beginning stages of Rheumatoid Arthritis????  Hmmmm, not really sure that exists.  I even went back after my Lyme diagnosis to tell the doctor it was Lyme, like I suspected, and she gave me a pamphlet to read about a new RA drug that was on the market.  Are you kidding me?
Today, my hand looks like this:

-Outdoor allergies diminished.  Yes, I am talking about the girl who could no longer ride her bike because her throat would swell, or ride with the car windows down.   I went to my allergist one summer and he did a scratch test on me.  The nurse got so nervous watching my back, she ran and grabbed the doctor, he immediately had me take benedryl and told me my immune system was going crazy, but he didn't know why. I informed the office staff of my diagnosis later, and I can only hope he learned why the immune system may be "going crazy" on people.

This is before things got too out of control.

-My thyroid is officially balanced!   I worked extra, extra hard at the gym, while living with Lyme and never saw any results, now I workout way less, and can see my body change daily.  Another side note, for anybody who doesn't see results while working out.  Go get your thyroid checked! Including t3,  most doctors never check t3, that's what was off with mine.  Also, when your readings are on the low end of the shitty, "scale" doctors go by, find a naturopath who will get you on some thyroid meds, it will change your life.  You do know that the "scale" system doctors use is a bunch of bullshit, from symptom data years and years ago.

-My hair is almost back to normal!  It was severely damaged 3 years ago, and could never bounce back.  I had to wear clip-in extensions.  For the first time in 3 years, I can leave to house without my fake hair in. Woot woot.

-The big food test.   I've been pretty hungry since getting off Rifampin, I can eat large quantities of food lately, and my body is craving things like grains, that I normally do not eat.  Generally, this would be a big problem...but lately, I've been experimenting with more foods, and taking risks at restaurants, with no ill effects.  Throughout the past  5 years I've come to expect swollen eyes in the morning, stomach pain, and bloating if I eat anything out of the ordinary.  This has not been happening lately, so I'm thrilled that there will finally be more foods rotated into my diet!!

-85% muscle pain free.  Muscle pain was one of my first symptoms, my entire body was on fire, and I had knots all over.  My skin hurt, and if you touched me anywhere, it would feel like a bruise. There were many sleepless nights with back pain.  Yes, some may say that was the Fibromyalgia, but not me, I knew that it was just a symptom of something much bigger.  Currently, I only get some pain in my upper back and neck, on and off.

-No more anxiety.  I didn't have anxiety on the list, but boy was I living with Lyme related anxiety. I've calmed down quite a bit in a year.

-Brain Stuff.  There is still brain stuff going on, but it is much better now.  I may have a flair with treatment and herxing, but for the most part my brain is ok.

With treatment I do still have herx reactions that bring some symptoms out and make for some bad days.  For example, muscle twitching, heart palpitations, light and noise sensitivity, headaches, dizziness, brain fog, tingling in fingers, and eye problems.  This is to be expected with treatment and herx reactions.  But overall, things have gotten better, I don't feel well yet, but there are good days :)
Every time I go to the doctor, she asks me what my top three symptoms are.  I'd say as as of today:

1.  Neck and back pain
2.  Eye swelling and irritation
3.  Brain exhaustion.  This one is hard to explain, but it feels like you are functioning on no sleep, but you slept 8 hours.  My body is awake, but my brain checked out, kind of feeling.  It sucks!

Everything else has pretty much diminished, unless it pops back in for a herx, or for just a day or two.
Now that's pretty good, considering my symptom list from a year ago!  So Lymies out there, remember, there was a period where things were much, much worse. It will get better with time, and treatment.  If you're at your rock bottom, I'm here to give you hope, that things will get better.  I have to remind myself of this DAILY, in order to get up in the morning, and remain positive, in my thinking.

Here is an updated treatment video, minus the Rifampin, that has now switched to another Bartonella killing drug.  I'm going to make a video on my horrible experience on Rifampin soon.

Sometimes you just need somebody to tell you everything is going to be alright...But that's for my next blog.

Thanks for reading