Day 143: My Lyme Story

A while back, a friend asked me why I don't share more about my experiences with doctors on this blog.  Privately, I messaged him.  Publicly, I didn't touch it; there was no quick answer and I didn't have the energy to discuss it ...even if I wanted to.

The truth? This blog was never meant to be a health blog.  When I started it, I knew I was sick.  But without "concrete evidence" of what was wrong (other than cysts on my ovaries and fibroids), I thought it was hormonal.  I thought it was caused by stress.  I thought it was in my head. I thought I needed a “lifestyle” change.

I tackled illness like I tackle everything in life, do the right thing, have the right attitude, and “fix it.”  Frantically, I started cutting back my hours at work, rearranging my house, doing more artwork, reading books... anything to get "balanced" and eliminate my symptoms. I removed the tv from the bedroom, created an art studio, took a vacation, started an Etsy store. 

I didn’t know that this “thing,” whatever this "thing" is...doesn’t work that way.  “It” can’t be told when to come or when to go. “It” won’t be willed into submission.  “It” doesn’t care if I do art or watch TV.  “It” takes pain-free moments and fills them with misery....literally within seconds.

Eventually, I will share the whole story.  For now....it’s too exhausting.  The short version?


I’m sick.

And from August 2010-December 2010, I was told that I wasn’t.

I was told: my blood work is normal, there’s nothing wrong with me, stay off the internet, it’s all in my head.

I was told I need antidepressants.

I was told I am getting old.
I was told I was having an "abnormal" period.
After a cyst (or something) ruptured and fluid ran down my leg, I was asked “Are you sure you didn’t pee on yourself?”
Even my acupuncturist--the most helpful of anybody--questioned my “random” symptoms.  “Maybe you stubbed your finger,” she said, when I told her about aches in my hands.  “Perhaps it’s just sleep?” she said, when I complained of discharge coming from my eye.

The symptoms were as vast as they were crazy: stomach pains, rib aches, random shooting/stabbing stuff everywhere, stiff neck, painful joints, aversion to lights/smells/sound, rashes, fevers, coldness in my chest and stomach, feelings of glass in my throat, insomnia, nightmares, hypersensitivity to chemicals, chest pains, swollen eyes, periods that came like somebody turned on a faucet.  I could go on and on and on....

I told EVERY doctor I saw (three before my current one) the same thing: "Before this happened, I got bit by something.  I broke out in hives, then a rash..."  None of them thought that it mattered.

Finally, I found a MD/ND (an Internal Medicine and a Licensed Naturopathic Physician) who would listen. 

He read all two-pages of my symptoms and held my hand. 

I cried the entire time.  


He cast a wide net: testing my hormones, my blood, my spit, my organs, and my stool.
The result?  I wasn’t crazy.  I was sick, very, very sick:  Adrenal exhaustion, low/almost absent immunity, reversed TSH levels, multiple viruses, cysts in my liver, high killer T-Cells, high c4a levels, and yes....antibodies for Lyme Disease (specifically bands 23 and 41).

Today, I take 33 pills--six times throughout the day--and two liquid supplements....just to keep going.  I have stuff to boost my cortisol, stuff to calm me down, stuff to give me energy, stuff to help me sleep, stuff to slow the viruses, and stuff to build immunity.

New to the regime is Doxycycline...something I just increased my dose of today.  They have been easing me into it for over a week, 1 pill every other day, 1 pill three days in row, now 2 pills daily...fearful it could cause a substantial reaction.

If I get a fever over 105, have a seizure, start passing blood, or lose function in one side of my body, I need to stop and get medical attention immediately.  If I get sick--like hardly able to move or like I got hit by a train--that is considered progress.   Officially, I am not diagnosed with Lyme Disease, but suspected of having it. Unfortunately, that puts me in the middle of a political nightmare; one riddled with red tape and ignorance.

Some days, I think I will get better. I will kick this thing. I will have a life again.  Other days, I feel defeated.  Months have gone by, time is passing, and I’m still here...not working, barely functioning, sometimes without enough energy to feed myself.  It feels like a slow and painful death. 

I am not looking for pity, but for understanding. I have not fallen off the face of the earth.  I have not disappeared.  I have not lost my mind.  I am dealing with something.  I HATE when people say stuff like “Wow, you went to the beach...you must be feeling better” or “If you can write, how come you can’t work?”  With chronic illness, there are good days and bad.  I try to highlight both. The really awful stuff (like worms in my poop or thoughts of ending it), I often don't mention.

Sometimes, it takes all day to write one, three-paragraph blog post (drenched with typos); something I used to do in 15 minutes.  Other days, I can’t recall words or spit them out.  Other days, I can’t lift an egg because it is too heavy.  

I have fallen down from pain, woken up from pain, and “it”--not sunshine--greets me first thing in the morning.

My experience with doctors?  They are human...and biased by their own pre-conceived notions.  
I have no interest in finger pointing, picking sides, or blaming; I just want to get better. I want everyone I know who is suffering to get better. I just want to move on.

I am writing this, not only for myself, but for others--hopefully to encourage some kind of curiosity and understanding. 

Lyme Disease is real. It is here and it is in Florida.  If you are reading this, you could be affected and may not know it.  If you know someone who has MS, Autism, Chronic Fatigue, Fibromyalgia, ALS, or Rheumatoid Arthritis, or random symptoms, so could they.  



Don’t wait until that happens to start caring. 

Altered Today: Letting it out, telling the whole story (almost), answering Mark’s question.

UPDATE 5/24:  Finally, A Diagnosis. I Have Chronic Lyme Disease. 

Comments

[Cindy]

We will get better, we will kick this thing, we will have a life again!!! Love you!!!

[Pam]

You wrote:
"Finally, I found a MD/ND (and Internal Medicine and a Licensed Naturopathic Physician) who would listen. 

He read all two-pages of my symptoms and held my hand. 

I cried the entire time. "

Wow, this brought me back to the day this very same man, who was the first to FINALLY listen to me, reached his hand out and said, "I will walk you through this and hold your hand. I will help you get back to your job you love." And I clomped to the floor and cried like a baby. Just being listened to and heard and treated like a human being was worth gold.

You're gonna beat this. I just know you are.

[KTag]

Cindy and Pam, Thanks for reading. Even though I know you are both going through your own journeys, it never ceases to amaze me how much you support mine. I would be lost without my Lymie friends. Thank you for understanding and loving me.

I can only imagine how many people have wept in that office...

[Lynn Garcia]

Thank you for words, I feel like I am reading my own diary but ( but much better written. ).

[Laina]

I'm so proud of you for opening up more here. You're such an inspiration to many people. Love you, Kathy!

[Cathysintersection]

You are such a strong person my dear, and a total inspiration. I love your positive attitude, and lack of bitterness. That is amazing. I will be rooting for you!

[Alyson]

This is a beautiful post!

[Deb]

Thank you for sharing your story, I understand how painful it is to do, and often so long we are too exhausted to tell all. I relate to the feeling of a slow death, it is exactly how I feel. It is like a puzzle in a box wanting to come together, make some sense of this all, but it never does! I too suffer with Chronic Lyme, my first bite/infection began when I was just a child. It is now over 25 years later and I am still sick. Maybe on my blog I will share my story, you have inspired me. <3 I send positive thoughts for healing and love to surround you always.

[Alter Everything]

Thanks for reading, Deb. Sometimes I wonder if I share too much, but the internet SAVED my life in the beginning. If I can help one more person feel less alone or know what's happening to them, it's worth it to me.

Would love to hear your story when you write it. Will you send me a link???

Love to you as you heal....