Sally's Health Update - Don't feel guilty if you skip this one!

9/15/2023 Personal from Sally...feel free to scroll if you don't give a sh*t.... lol:
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To those in my corner:

This is one of those "If I died tomorrow, I'd regret not saying this publicly" things....

You're going to see things happening again - but don't think I'm out of the woods yet, please.

To those that don't know, misdiagnosed Shingles in 2018 resulted in severe nerve damage in one side of my face. You'll hear it called Trigeminal Neuralgia (TN), Post Herpetic Neuralgia(PHN), and with a nickname of "Suicide Disease" because the pain is the worst pain known to man. Horrid. Makes a kidney stone a walk in the daisies. Or having a baby less painful than a stubbed toe. I digress.

I'm feeling better than I did last year, and waaaaaay better than how things were 2 years ago.... but I hurt like a bad toothache every day.
I'm commonly up and working at about 4-5 AM - because if I can be quiet, I usually don't hurt. At least as bad.

The long-awaited trip to the Neurosurgeon Specialist in Omaha in late July was a BUST... a TOTAL BUST.   And I had jumped through hoops to see this guy - I as so hopeful before the trip. 

 What a total waste of $1,500. If I get a surgery to numb the pain, it will also kill the nerves in half of my tongue - which of course, would affect talking, eating, swallowing, appearance... for the rest of my life. Because I am doing better, I guess we're just gonna have to work harder at self healing & med dosages to cope with life, huh?

I drove all night to get to Omaha.  Got in to a Starbucks and made this diagram to show the good doctor all of the places I have hurt.  For a 2500 mile drive, and this diagram, I got 15 minutes in his chair and a stupid shot of novocaine: 

So you all know, I don't get the 5 minute "Hell Attacks" that would cause me to scream in pain anymore. (So don't be afraid to zoom with me! lol) BUT... if I get triggered, I'm getting better at getting through them in less than 15 seconds - usually - but they still can be quite bad. Rare. But bad. This is why I prefer to zoom than talk on the phone. If I'm getting a zinger, the other person can see that I can't talk for a few seconds. Or if I'm talking slowly, I'm not stooooopid.... lol..... (see me pointing at my jaw?) ... I'm just trying to reduce the pain I'm in.

I never hurt if I'm sleeping - so sometimes, it takes a nap to "reset" pain. Two years ago, I met a guy that has a construction company - he hurts the same way I do. It was interesting to hear him say that his couch at his shop/office keeps him able to do his business or he'd have to close his doors. He taught me how to just lock the door, walk away from computers and phones, and go crash if I need to. So that's what's kept my business hanging by a thread and me alive. Just so you know. lol

So I have more "naps" than any of you, probably - because it's the only way I sleep anymore. I try hard to sleep 6 hours in a row and I just can't do it. If I even lightly wake up to reposition myself, I often get a zinger of "electrocution" sort of pain and then I'm wide awake again. Sucks.

But seriously.... I'm becoming reliable again.... because I'm learning what to avoid - and if I'm going to have a day that I know is gonna be bad, then I can resort to a handful of pills that I really try hard to NOT take. I've got my own mini pharmacy here these days. lol. On that note, I have learned that THC is an amazing thing - I can't smoke it (yuk!) but another TN Sufferer taught me that a gummy gizmo every once in a while helps me through an afternoon. It's just that they're waaay more expensive than narcotics - Thank You, Greedy Government & Pharma!

We're getting things done - but my ability to talk is still severely impaired more often than I'd like to admit without a hit of narcotics 30 minutes before demands are put on me.

Obviously, this makes doing videos difficult. So for right now, I've got some great help and we're cleaning up the PDFs & getting legal work done. Yup, you heard it right - I'm still up to my eyeballs dealing with the jackasses that all but killed this business in 2014 - now. They almost killed me - but they have no idea how much stronger I am now than when my daughter died. Game on.

I'm trying to sort out where to put different types of content so we can still talk transparently - so as I do that, you should see my Linktree grow. I'm here for all of you, and for this business. We'll move rest of this stuff to other places. BUT KNOW - that the other stuff is important to me and to many, many other people. We all learn from each other. And that's more important than any sewing pattern will ever be.

I'm incredibly grateful to those of you that have hung in there with me.... this has been so dreadfully difficult the past couple of years. I can see now why I get emails and messages quite often from people that say we helped them greatly when they were met with challenges. Many of you have done amazing things for each other - and now, for me. Much love to all of you that can relate and have participated in some way.

I sure know I wouldn't be here without the true friends that have had empathy and compassion for me!

Remember, sewing is just the excuse that brings us all together.

Love you all,
Sally and her growing Rock Star Team

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