Holly's Lyme Disease Fundraiser

“I’ve had my adventure. I don’t need something new.” -Elsa, Frozen 2

I thought that when I dealt with my endometriosis and prolapse I was all done being the “chronically sick girl who didn’t ‘look’ sick. Well, except for the joint pain I’ve had since I was a child. That, apparently, was “undifferentiated connective tissue disorder” (fancy medical talk for “we don’t know why your connective tissue sucks”) and was something I would “have to learn to live with,” said my rheumatologist. I’ve had it for almost thirty years… I know “how to live with it” but I don’t love it.

Then the prolapse happened again. Fixed it. Now I’ll be better, right?

But then, right after my grandma died, seemingly out of nowhere, my eye started hurting terribly. Then my trigeminal nerves in my face, into my head, into my neck… Searing pain increased over the next few months into a climax of agony. Additionally around that time, other neurological things started happening: “pins and needles” in my hands and feet, numbness in my face, tongue and arms (I thought I had a stroke!) It became too much to bear. I ended up getting quite a battery of tests from my neurologist who ruled out tumors and MS, but the answer to me was still devastating: “We don’t know.”

Crap. I’ve already done this journey. Here we go again with pain that’s ruining my life and they. don’t. know.

Then my adenomyosis also flared up. I had a hysterectomy for that and an appendectomy as well which revealed a sickly appendix that had been undergoing some kind of chronic infection. Hmm…

The nerve issues persisted. Out of desperation, I have been a guinea pig for all sorts of medications. Half my body weight is probably gabapentin. I travel to San Francisco to get shots in my face and head every few weeks. I have been getting more and more exhausted. I was referred to Stanford to look into nerve ablation or a possible nerve compression, but just as that journey started, I threw another line in the water…

I started seeing a brilliant naturopath. Over the past several months, she has discovered some important information:

I have Lyme Disease as well as a host of other tick-borne infections as well as Epstein Barr Virus.

Well THAT explains a lot, doesn’t it.

Lyme attacks connective tissue, nerves, and many other things and can GO CRAZY during periods of extreme stress.

These diagnoses explain EVERYTHING.

I am not sure when I was bitten.

Turns out, everything you know about Lyme is probably wrong. I’ll give you some facts:

Most bites don’t leave a bulls eye rash even if they are carrying Lyme.

The little nymphs (size of a poppy seed) are particularly dangerous because they are hard to see.

Many ticks are carrying multiple infectious disease agents.

Most people don’t know they were bitten.

Bugs can transmit disease quickly. No, they do not need 24 hours.

Mosquitoes and other blood suckers can also transmit Lyme.

Untreated Lyme and co-infections can lead to very serious problems.

The usual tests for Lyme are insufficient and miss most positive cases of Lyme. They do not even test for the co-infections.

So, here I am, grateful for answers and trying to FINALLY GET WELL.

I have a confession. The “put-together mover and shaker” you see is not the reality most of the time. I am struggling more and more. I have many days I cannot get out of bed. I have days where it hurts to open my eyes. I’ve been to the ER for the pain and would live there now if not for the specific cocktail of medication that keeps me mostly managed. I am exhausted beyond reason. I learned a long time ago with endometriosis that if you can paint on a face every day you can trick a whole world into thinking you're okay even when you feel you cannot go on. Well that trick keeps on working although for the last few years my face nerves hurt so bad it is painful to put on makeup.

The good news is that there is hope to feel better!

The bad news is that this treatment I’ve started is bleeding us out financially and is only going to get worse.

I’ve tried and tried to figure out a way to deal with this on our own, but it’s just too much. That being said, Sonoma County locals please consider my purchasing floral designs http://buttercupandholly.com/

Soon, my other gift and home decor commissions will be available as well on Etsy.

And then, there is this Go Fund Me... If you're able and willing to donate, I would be so grateful.

Please do not feel obligated to donate. We all have our own challenges in life and I know the economy is not in the best shape at the moment. This is just *if* you have the resources and *if* you feel compelled.

Thank you to everyone who is able to donate and to everyone who has encouraged me through everything and for everyone who prays for me and my family. You remind me that better days are on the horizon and to keep my head up.

The LOVE of the people around me is invaluable.

I may not yet be blessed with great health but I am certainly blessed with great friends and family!

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Cost Breakdown

(this is approximate for one year. I don’t know how much more will be after that but a year is for sure…)

$550x12= $6,600 (herbs/supplements/meds)

$310x 8= $2480 (visits)

$4500 (6 weeks iv)

$1500 retesting

=

$15,080 for a year