Yup

This is Heather posting.
After a lifetime of doctors thinking her demise was imminent, my mom finally died. February 20th, at 10:30 pm.
People at her apartment complex are surprised it actually happened, too. She’s always bounced back before, even after clinically dying twice over the years.
It sucks I don’t have a mom any more. But I’m glad her pain has ended.
We booked a last minute ticket to come here, leaving 5 hours after we booked it. I told her not to feel like she needed to hang on until we got here, and she actually listened to me.
We’re now in Salt Lake, making sure everything is taken care of. Her cat Olive is in a good home, with a neighbor in the same apartment complex.
I’ve arranged to have my mom cremated. We’ll scatter her somewhere pretty.
Before she died, she was describing to me how wonderful it was that so many people wrote to her. She was touched that she had a positive impact on so many. She had no idea until the letters poured in the last two days. Thank you.

I have necrotizing fasciitis

I have a few hours to a couple of days to live. In 24 hours, the infection has spread all through me and is destroying muscle and everything else.

I had imagined many different endings…but not necrotizing fasciitis. Figures it would be dramatic.

I’d love to hear your parting thoughts. If you don’t want to leave a comment on a public forum, my email is wendysuewyatt@gmail.com  I probably won’t be able to respond, though.

See you on the other side!

Hanging by a thread

It feels like I am too sick to go on living. Last night I reached down to get a second blanket because I was having massive chills. The darn swollen groin that I have been trying to get someone to care about…popped! I was in a world of hurt last night.

Today the fantastic woman missionary brought back my clean clothes and cleaned my apartment. I don’t really remember much about her being here. I was sort of in and out of consciousness. I went through 6 hours of chills at night, then was in varying degrees of consciousness for hours and hours. Look what happened to me 😮

help red what-is-it awful groin

purple-groin

I’ve been barfing and sweating all day. Soooooo sick. So what happened to the surgeon who was going to admit me? He never called today. Am I a goner?

My worst/best friend, the crazy surgeon

omg

Oh, my gosh!!! Thank goodness I have not been as sick today. No naps so far. Lot’s of sweats, though.

I had a doc appointment at 9 AM. My blood tests show low albumin and my pee shows high protein. Even weirder is that my potassium is too high. I’m glad I quit taking those monster sized potassium pills. I asked the doc why he gave up on finding me hospice. He thought they were taking care of me! My doc decided I need to be admitted to the hospital. He does not have admitting privileges anywhere, so he called the clinic’s overseeing doctor. Guess who that is? The crazy surgeon I couldn’t wait to escape from in December. So the guy decides to admit me to Davis in Bountiful. I looked it up online and it looked too nice. I figured my insurance would never pay. The surgeon’s second choice was back to the U. So…I quick came home…made arrangements for Olive to stay with Kent, I packed up my CPAP, undies, toothbrush, etc, tried to clean the fridge a bit, gathered my laundry and a bunch of other tasks. I was expecting the call any minute telling me what hospital to go to.

furrrgot

I did get a message from my doc’s nurse, but all it said was they had faxed the info to the hospital. I called back for clarification and later wrote them an email. Around maybe 3:30, I decided to call again. I picked up my phone and was looking up the # and my phone vibrated. Scared the heck out of me 😛 It was the crazy surgeon! OMG!

He said I could not go to Davis after all. Must have been my crummy version of Medicaid, because he asked me all sorts of insurance questions. We talked 25 minutes. He seems clueless about poor and disabled people. Now he says he is sending me to Health South. I just looked them up…..Designed to return patients to leading active, independent lives, HealthSouth Rehabilitation Hospital of Utah, is a 84-bed rehabilitation hospital that provides a higher level of comprehensive rehabilitation services. I seriously doubt that my insurance will pay for that! In 2013 when Heather and Huntsman hospital were trying to get me in a rehab place, the only ones who said they would take my insurance were rated bottom of the barrel….and none of them was actually willing to take me. With that in mind, I will be astounded if HealthSouth takes my insurance.

awesome

The surgeon said it was bad for me to lay around in bed without doing anything. I assured him the only time I am in bed is when I’m asleep. I didn’t say it….but I don’t come close to even averaging 8 hours of sleep….even when it’s broken up. I wish I did! I love the rare times when I can sleep 12 🙂 It’s usually from pure exhaustion.

5 PM and the surgeon just called back and talked 13 minutes. He was asking me about a few of the diagnoses on my medical records. For each of our conversations, I have told him how much IVIg helps me with each of my problems. He says he is convinced and wants me to get it to prove the idiot neuros at the U wrong. Well, gee….it didn’t even convince the idiots when I went into documented MG crisis in 2015 and got 5 IVIg’s thanks to another hospital’s ICU. I think I will just shut up and stroke the crazy guy’s ego. He says he wants to get the idiots in trouble. I know he hates them from way before me. Snicker…

Seriously….I have been trying to complement the surgeon in between times of being abrupt with him. He is a formidable foe. Very bad idea to be on the wrong side of him. He’s reminding me of Trump. The surgeon will do anything to trash people he doesn’t like. The only reason he is “being nice” to me and spending hours pouring over my records is because I am so complicated and intriguing medically. He wants to be the mastermind that figures me out. Go for it! If he is the smartest doc in Utah….I’m all for him proving it! If he cracks the code, I will go from skeptic to admirer.

whoa

I guess I won’t be going to a hospital today. It’s too late now. I reminded the surgeon that Monday is a holiday. He did a lot of swearing. I told him I have an appointment with my internist on Tuesday and could just wait until after I see him. Whoa! Them’s fighting words! He repeatedly said the internist could do nothing for me compared to what he….the surgeon, could. This guy runs on pure ego. Yup, sounds like a politician we all know 😛 I need to keep the guy excited about helping ME!!!!!

You know what sucks the most about still being here? I have to unpack and put together my CPAP. That’s more than I have strength for right now. There’s also a shopping cart in my living room full of all things Olive. I don’t mind the cart, I just don’t want to get in trouble for it. It will go up to Kent’s apartment, along with Olive, when I leave. Good thing Olive was still here! She reminded me to take my meds. I had to go get her treats from the cart.

Only God knows how all this is going to turn out.

trust

 

Mortifying? Awkward? Embarrassing? And then some…

poison

This has been one heck of a day! I’m not so sure how much of it I remember. The usual for me lately….a night of torturous chills. When I woke up, I was so queasy I wanted to die. I don’t know how to adequately describe the pain and nausea. My skin and lungs were stinging and raw. The queasiness was more like a whole-body poisoning.

I spent hours coughing up crud out of my lungs. What was weird about that today was the extreme saltiness with a hint of bitterness. I wonder what that means?

I kept falling asleep sitting up in my chair. I doubt there has ever been a day in my life like this. I would be so sick that I would fall asleep in my chair…then I would get in bed and nap…back to the chair and I would fall asleep again….repeat a zillion times.

foot

Leg spot in the bed

Then the cold sweats started. I had to have the fan on me in an attempt to get drier. Then the next time I got in bed, I woke up with the entire bed and bedding soaked. I sat partway up from the wedge pillow and fell back on it. Water splashed like I was in a pool 😦 This time I had the presence of mind to take pics.

wedge-pillow

Wedge pillow sweat print

I never did eat anything today….but my blood sugar went up and up. I can only guess it’s because of my mystery infection. I went and looked in the fridge a couple of times, but that was all it took to make me want to barf.

I left the fan on full blast and hoped my bed and bedding would be dry a few hours later. I turned on the oxygen and CPAP and was holding onto my walker, about to get in bed. It all happened so fast that I’m not exactly sure why I fell. It might have been that I slipped on the puddle always under my left foot. I pitched real hard into the wall with my head. I saw stars. I could also feel my left knee bend the wrong way and my left foot fold up in an unnatural way.

bloody-little-toe

Little toe was bloody.

Ummmm….great! Here I was on the floor with a totally numb leg and I was extra MG weak because I was late taking my Mestinon. I realized I needed Mestinon once I got to the bedroom. Duh. I tried getting up, but my left leg was useless. The longer I sat there, the more other parts of me hurt. I knew there was no other choice but to call 911.

scuff-on-knee

The knee just looks a little scuffed, but it hurts deep down.

I warned the dispatcher that I am a very large woman. She wanted me to stay on the phone with her. Soon after, it all hit. I was shaking like a leaf and then I started sobbing. Everything hurt pretty bad and here I was….an old, fat woman in her nightgown, wallowing on the floor, unable to get up 😦

The first crew showed up. I was a dead weight. They could not even begin to lift me up. Then I heard a fire truck come in. Soon my whole apartment was full of paramedics. By that time I had an actual pool of edema on the floor the length of my left leg. We had to keep mopping it up.

Thanks to all the people here, they put sheets around me from different angles and got me on my feet. Then they put me in my wheelchair. The lead paramedic wanted me to go to the hospital. I said I had already been there, done that, and it was useless.

swollen-knee

It’s hard to tell there’s a knee there. My whole leg/knee is swollen.

Now that it has been a few hours, I am in soooooo much pain! There’s a lump on my head, all parts of my leg and foot are more swollen, it feels like my little toe is broken or badly sprained and I am finding more cuts and scrapes. I have been extremely lucky in the past that each time I fell, I was able to stop my fall. That luck ended today.

An hour or so after the paramedics left, a finger on my right hand was bugging me. I looked down to find a bloody bandaid. I have no recollection of the injury or anyone putting a bandaid on me. When I hit the wall, somehow I split the area between my pinky and the next finger on my left hand. That hand is hurting more and more.

cut-between-fingers

Dang! It all slowly unfolds. Bit by bit I can feel more pain from parts that were injured today. It’s probably going to be really painful in the morning 😦 I am still sweating like crazy, too.

pain

Nightmare night

kill

I am sooooo glad to be awake! Even if I woke up at 4 AM! I went to bed after 10, woke up at 1:30 and again at 4. It was one long torture. Despite the heat being on, I had non-stop chills. Have you ever had chills that felt like they were going to kill you? And when I woke up to pee, the pee burned my skin. Then this morning when I took my meds, my mouth felt hot with cold liquid touching my lips. My lips were numb. What the heck? I’m also real sorry I had kefir and a banana. It went thud in my gut 😦 This is my worst bout with nausea in a long time. I just can’t get the awful taste of my kidneys not working out of my mouth.

cannot-deal

Well I started to feel like I was going to pass out…so I got back in bed. Woke up a couple of hours later very soaked in sweat. Way better than chills! A while later, I got up from my chair for something and saw the MedSource truck in the parking lot. Maybe 10 minutes later, my phone rings to let him in the door. The fix-it guy took my chair for a spin. It needs new motors! The loud noise was coming from gears not meshing in the motors. I have hardly gone anywhere in the #$%^&*! thing. He says the chair has 43 miles on it. Really? My old chair must have a couple thousand miles. I’ve only used the new chair to go shopping a few times, to the hospital once, to the Natural History Museum. Hard to remember! It has been months. What a lemon 😦

temps

We are supposed to have a high of 50 today. Might make it. At 11:30 AM it’s 43. I wish I felt well enough to go somewhere. Yup! 50 by 2 PM. I have the window wide open. This place desperately needed airing out.

lifeishard

So at 4:30, I suddenly remember I’m supposed to call my internist for an appointment. Every. Single. Word. was painful to say. I got a chatty phone person 😦 I came within seconds of flipping out on her…or maybe I did flip out 😛 I wanted an appointment for next week…preferably Tuesday for the good traveling weather. There were 2 times available….before 8 AM. I told her I did not think I could get there at 7 or 7:40 since the trip takes an hour and a half. She went and talked to someone when I started going nuts because she was telling me a bunch of different days and times. I have less than zero patience after that office sent me on a worthless trip to the ER last week. Gee, miracle of miracles, they could give me an afternoon appointment. Crap! Between 4:30 and 6:30, the forecast switched. See forecast above. Sigh…..

pink

Around 5, the stupid chills hit. Now my muscles are seized up. Not a happy camper. I am burning up, but shaking cold. I just took a pic to see what I look like. Neon pink. I REALLY can’t take much more of this! Today I started a new kind of cough. Brian stopped by my window. A few sentences and my eyelid slammed shut and the coughing wouldn’t stop. Ack! I am covered in goosebumps and sooooooo queasy!

goosebumps

The nightmare nights march into nightmare days and back to nightmare nights…. 😦

nutella

And…have you seen the graphic about what’s in Nutella? Bummer! I want more hazelnuts. Well…not now. Ick, food…but a few years ago 😛

big-nut

Only $52 for 105.8 Oz.

 

Nobody wants to look at me naked

naked

Today I went to a female doc. She is listed as an APRN…that’s an advanced practice registered nurse. She does things like PAP smears, which I don’t need because I had a hysterectomy in 2013. I wanted her to look at my pubic area, which is grossly swollen. There’s a hard painful mass as big as my fist. It hurts like heck and makes me nauseous. Somehow looking at it never made it to the agenda today.

Instead, they had me pee in a cup and they actually tested it. There was no obvious infection, but there was protein in my urine. I am supremely pissed off that the hospital never bothered to test my pee. The clinic is also going to do a culture to look for hidden infection. They did more blood tests, too. And they are asking the hospital for all my records from last Wednesday. I have another appointment at the same clinic on Friday.

I was supposed to come home and call my internist. Instead, I got my hair cut, I went to Trader Joe’s and then napped until after business hours. While getting my hair cut, I asked the woman when I was there last…October! No wonder I needed a haircut 😛

People with West Nile Virus often get kidney damage a few years down the road. I haven’t even peed a whole cup all day. I have that yucky taste in my mouth again from my kidneys not working 😦

In my 20’s, I lost a 7 month along pregnancy due to preeclampsia. For years in my 30’s to 50’s, I had kidney problems thanks to lupus (MCTD). Then in 2012, I got WNV. That was another insult to my kidneys. Diabetes is also rough on the kidneys. In the past, high doses of steroids and monthly IVIg saved me. I think at 61 years old, it has all caught up to me. Sigh…

wnvlogo

West Nile virus may be deadlier than thought

After not picking up my mail for a week, all that was in the PO box was a piece of junk mail and a letter from a neuro’s office saying a colleague had jumped ship and the 2 remaining neuros were taking up the slack. Pffffftttt. Utah needs some good neuros….especially ones who know something about MG. The University seems to have poisoned the waters.

Me, forget?

party

Yup. I can talk about or think about my past with relative ease. But what did I plan to do this month or this week? Did I promise anything? What am I forgetting? Sigh…I don’t know.

forgot

A couple of weeks ago, I got a postcard saying I missed an appointment at Huntsman on my birthday….but it doesn’t say for what….and I was there that day getting my port flushed. I’m confused. I never remember to call during business hours.

This week I have to be at a particular place at a specific time for 3 out of the next 4 days. Will I get it right? Will I remember to ask the important questions? Will I be at the right place, at the right time?

This morning Kent knocked and used his key to come in. I just had on a flimsy nightgown. Oooops! The heat was going and I was not warming up. My voice was broken. After a few sentences, my left eyelid slammed shut. Soon I felt like I could barely stay conscious. I was listing to the left.

On his way out the door, Kent asked if he could take out the garbage. I’m still kicking myself for not just plain old saying YES. Instead I said I needed to gather up garbage from all the rooms. He left. I began putting all the garbage in one place. My legs gave out from under me. It scared the beejeepers out of me 😮

stinky

That’s when the chills started. I had to turn the heat way up. Every once in awhile, I tried to do more. It’s as if all my strength drained out of me. The smell of the garbage all in one place was making me queasy…but I was too weak to do anything about it.

leaking-leg

My guts have hurt today. My lungs are mad. Even my leaky leg looked like it was trying to get infected. It soaked through 2 hand towels and a bath towel. Yuck. While transferring recycling into a cardboard box, I realized there were 5 flattened Kleenex boxes in there. Geeze! My most annoying but least painful problem today was my eyes. I never did have clear vision today. It was always double and blurry.

sun

The good news is our weather forecast is for sun and warm-ish temperatures. But…that means an inversion is setting up. It’s harder to breathe….and will undoubtedly get worse. At least we don’t have the worst air in the country…yet.

boo-hiss

air-quality

Beautiful sunshiny day

sunshiny

The sun is out today. No more rain. It would be as good a time as any to trek to a hospital. Last night I endured 6 or 7 hours of intense chills while sort of asleep. All of me was seized up. I then slept for maybe 3 hours without chills. Each time I got up, my groin was hugely and painfully swollen. Something I haven’t mentioned is my left shoulder. It hurts sooooooooo bad! It’s the exact same pain I had at the beginning of WNV. Excruciating! I wanted to gnaw my arm off then and now. It has been getting worse each day for at least a week

hosp

It figures! I took a shower and was trying to get psyched to go to the hospital. At 10 AM, I gave up and got in bed. I remember waking up for a second to take off my sleeping mask because it was soaked, but I remember nothing else…until I woke up 6.5 hours later. Wow! It was another one of those deep, cleansing sweats! My wedge pillow was soaked through, the bedding was soaked and so was my nice, clean underwear.

sweat-print

I took everything off the bed and draped my quilt over the laundry bin. I repositioned the wedge pillow in front of a fan on full blast. It was awful hard getting my soaked undergarments off me. My left arm quit hurting and all of me is more flexible. Yes! If only I could stay feeling as well as I do at this moment 🙂 At least I don’t have to think about visiting a hospital today. It’s not long until dark.

Quite dark now. Still haven’t been out of my apartment since Wednesday. I want to go out and take some pictures. A couple of days ago in the rain, the forsythia buds swelled huge and looked magenta from here. Later that day, the first hints of yellow appeared, Now there’s more yellow. Spring happens fast 🙂 A guy on the news said his neighbor’s tulip leaves were out. Maybe he meant daffodil? Or maybe everything is bursting forth. I never did get to go to Temple Square for the Christmas lights. Now it’s time to go there and see what is starting to grow.

Oh, pffffffttttt…my arm hurts again and my head wants to explode in pain. The swollen parts of me are incredibly itchy! Not feeling very well. The few hours of respite was nice 🙂

hurts

Too intense

worst

Last night was awful and today has been awful. It sums up most of my life right now. I’m either having wicked painful chills, or sweat is pouring down me and my hair is soaked. Well….sometimes I am going from one to the other.

strange-bumps

Friday night the swellings were horrific. It felt like I was going to split my skin. I had noticed bumps before, but this time I took pictures. What the heck is going on with my skin? Is it a consequence of the edema or are the bumps for some other reason? They feel like hard little pebbles.

close-bumps

This morning was the pits! I sat here in my chair with the heat up ridiculously high and had teeth chattering chills while my arms were covered in goose bumps. The ice went all the way through me. After enduring hours of chills, I got in bed and only napped an hour. It seemed like forever.

napping

The grossest thing is my leaky leg. It has been leaking a lot each day. My whole apartment stinks 😦 I have towels everywhere like on the ottoman, on the floor near where I sit, on top of my bed, etc. But…when I walk across the floor, I leave a trail of puddles. In bed the juice soaks into the memory foam and bedding. It’s everywhere 😮 I was reading about what the edema is made of. It’s the fluid that leaks out of blood vessels.

The cold sweats I had while sleeping yesterday are happening today while awake. The slightest exertion and sweat starts pouring down my head as if someone turned on a spigot. As it hits my face, it’s cold! Feels weird. I wonder what it means? For example….all I was doing was filling 3 little tubes of insulin for my pump from a vial. How hard can that be???

tigger

I have not been out of my apartment since Wednesday. I need to get mail and take out garbage. When it comes to food….I have plenty. I have hardly eaten anything in days. The only person I have talked to since the hospital is my shrink. A woman came to my door while he was here, but never came back. Truthfully….I am a bit scared of human interaction. If someone shows up at one of my worst times, I cannot talk intelligibly, let alone think. I hate being a whiny, crying idiot 😦 I can look out my window, watch folks go by and feel not alone.

pooh-and-friends

At some point of each day, I consider going to a hospital. But I feel too sick to clean up and leave, so just stay home and hope it will all disappear. That’s a strategy, right?

I never did talk much about the ER visit. That’s because I am all talked out about it on one of my support groups. From the time I got there until after I was home, we kept up a running conversation. I copied and pasted it. It’s a 16 page Google document! I struggle over writing a blog post on my sickest days. It’s hard to think.

pooh_think