279 replies to this topic

[bdutton]

Shit. 

[Hines]

I'll throw some prayers up for the family.  This is shocking.

[toonces]

Speechless 

[AspenLeif]

Holy shit.... holy shit....  My heart is broken for them.  

[Buscotucky]

Damn, so sorry to hear Scott...

[BobG]

My condolences to Scott and the rest of the family. She was a terrific person and will be sorely missed.

[Gusso]

Wow, so sorry to hear the horrible news. Scott, prayers for your family. She will be missed.

[Dave McG]

I'm so sorry Scott. We all knew that she has been in bad shape for ages, but I never would have guessed that it would take her so soon.

[dondewey]

I was always so impressed by Julie. 99% of people would have just laid down and given up years and years ago. Julie fought mentally and physically way beyond what could be expected of anyone. Oh, I gained 60 lbs of water and my legs stopped working, guess I'll have to crawl around my garden for 6 hours before dragging myself inside to cook for everyone and then do hours of computer work. What a badass.

[ScottS]

Man, life went to shit super fast.  I don't know if you all remember, but Julie got bit by a spider in Feb 2020.  She nearly died from it, but recovered within about a month and a half.  When the pandemic hit in March 2020, we put her into hard quarantine in an apartment attached to the house because she was in such a fragile state.  Then the pandemic made Annie's sales go up 5x overnight.  It was bonkers.  Customers were freaking out, we didn't have enough labor to handle the sales, we couldn't hire more labor, the labor we had was scared to come in.  Julie and I handled most of the operation.  To stay in quarantine, Julie worked from 2am to 7am.  It was awful, but we paid off everything and put some money in the retirement fund, all in a couple of months.  That was about when I left the board.  Between business going crazy, still sick wife, full time job, lonely girls because they couldn't see anyone or do anything, and asshole son still being an asshole at every opportunity, I just couldn't handle it all.

 

Fall rolled around, all indications were that sales were going to be bonkers again, we decided there was no way we could keep that pace for a full season.  We decided to sell.  Found a buyer and closed the sale in Jan 2021.  The operation stayed in our house until April 2021, which caused a ton of stress because the new owner was kind of a bitch to Julie.  She spent almost all day every day at her best friends' house.  Julie basically became a second mom to her kids, and despite the circumstances, it was a great experience for all of them.

 

At that same time, Julie's doc suspected he figured out what Julie's underlying health problem was - babesiosis, a tick-borne infection similar to Lyme disease that hides in your capillaries and slowly multiplies over time.  Your immune system doesn't really know what to do with a systemic immune-evading infection, so it touches off autoimmune disorders and causes random inflammation all over the body.  The way to test was an anti-malarial drug, as babesia are so similar to malaria that the same drugs work on both.  The hardest part with treating these things is that dead ones are 3-5x more immunoreactive than live ones, so as soon as you start attacking them, your body completely freaks out.

 

Well, her body freaked out.  Mental and physical misery, with MS-like symptoms escalating from instability, to needing one cane, to needing two canes, to needing a wheelchair, to seizures.  Starting in about April 2021, I haven't been able to leave the house for any length of time without having someone come keep an eye on her.  After four months of the anti-malarials, she was threatening suicide, so I made her quit.  The mental symptoms went away, but the physical symptoms continued to escalate.

 

Fall of 2021 we went to see her doc.  He did a capillary blood smear and confirmed the diagnosis by spotting the little fuckers in her blood.  He proposed an aggressive treatment given her advanced state.  She said "no way, that will kill me", and proceeded to try everything else she could think of to knock the population down.  Marijuana and it's antibiotic properties were one of her primary tools.  I believe she was posting on the board for awhile at that time.

 

March 2022, she had been escalating her marijuana dose to absurd levels.  Concentrating it into RSO and taking it many times a day.  She never really got high from it, despite her trying.

 

Eventually something broke.  I suspect what happened is that she succeeded in killing some of the parasites in her brain.  The MS symptoms went away almost overnight.  They were replaced with dementia, hard dementia that persisted for over a week with no signs of abating.  At that point I talked to our doc pleading for help.  He said she probably set off some inflammation in her brain, causing encephalitis.  First we've got to get the swelling down, then we have to get the parasite load down.

 

We got the swelling down, and she became lucid again.  She was fully lucid for about 36 hours, and that was the last time I was every really able to talk to her.  Getting the parasite load down required putting her on the aggressive treatment that she thought would kill her.  Julie and I talked about our options during that lucid period - dementia and a nursing home, or fight and hope for the best.  As she did at every opportunity, she chose to fight.

 

The next two months were hell on earth.  The treatment caused incredible pain, confusion sometimes escalating to dementia, short-term memory loss, incontinence, weakness, everything.  She'd wander the house destroying things.  She'd call for me every hour all night because she forgot that she had already called me an hour ago.  She'd sleep 2 minutes and wake up convinced it was morning.  Over and over again.  She'd lie face down on the bed moaning in pain.  She'd poop the bed, and in her demented state, fight me while I tried to clean her up.  She usually remembered who I was, and sometimes who she was.  By the end, she was so weak that she couldn't really even help me get her out of bed, to the wheelchair, to the toilet, and back to bed.  She was a 160 lb ragdoll.

 

By early June she was so demented that she got belligerent, trying to hit me and refusing to take her meds.  Refusing her meds was guaranteeing a one way trip to a nursing home, so doc and I decided we had no choice but to escalate further.  Two big doses of a strong antimalarial medication.  She was suffering through it, and then one morning she had asymmetric swelling in her legs and incredible difficulty breathing.  Doc suspected she had a pulmonary embolism.  Run her to the ER, yep, run her to ICU.

 

ICU docs handled the clots, stabilized her, but did not acknowledge the underlying parasitic infection and the impacts of treating it.  In fact, they refused to do all of the testing that her doctor requested and launched an ethics investigation against him for poisoning her with antimalarial drugs.  He screamed at them for days, begging them to run the right tests.  They ignored him and basically let her fade away.  Eventually her heart gave out and I was standing there at 3am holding the lifeless hand of my wife.

 

Our 25th anniversary is next week.  I'm still going to celebrate it.

 

Now we're fighting over an autopsy.  ICU docs wanted one to prove our doc poisoned her.  She was too stubborn to die quickly enough for them, so the medical examiner said doing an autopsy now won't prove anything.  I'm seeking an autopsy to prove that the ICU docs were negligent in their treatment by ignoring our doc's communications for so long.  They actually had finally relented and ordered a bone marrow biopsy for 11am on the day she died.  Too little too late.

 

Now I'm alone and I hate it.  Everything we had planned involved her.  I don't even know who I am without her.

[EWW]

I don’t know what to say….

Just wish I could give you a hug Scott

[orudis]

This is about as terrible as can be. I was always impressed by her ability to forge on even though the docs kept not understanding the issues. I’m so sorry to hear this Scott.

[Dave in Indiana]

No words.

[SnowMan]

Vibes. 

 

She was a great person and you had a great life together. Both of those should be celebrated. Don't get trapped in your grief that you forget the good times.

[Brownbeard]

I'm shocked and sickened by this. I can't fathom your grief right now. I'd be inconsolable. I'm so sorry. I'm fighting back tears typing this.

[jimdkc]

So sad to see this. Vibes to Scott and family...

[Hines]

I don’t know what to say….

Just wish I could give you a hug Scott

 

Exactly this.   That was hard to read, I can't imagine living it.  You are a good man Scott.  I'm glad you got to experience your soul mate.

[VolFan]

My heart is broken for your family.

[Corbin]

I am so sorry Scott. Please don’t be a stranger and reach out if there is anything we can do for you.

[toonces]

 

 I don't even know who I am without her.

 

Of all the things you wrote, I probably understand the statement the most.