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Updates on Last Hospital Visit/Pulmonary Embolisms

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at Kalamazoo Hospital- warts and all, no fuckin’ filter. 

Consolidating everything here:

I had a DaVinci Robotic hysterectomy on 12 July- they kept my ovaries (and doc says I may not go into menopause til near 60, as I apparently have abnormally young bits, yikes)- this surgery cured a lot of pain, but caused even worse. I almost died suddenly from blood clots to both lungs which were directly from the surgery, they surmise.

3 Weeks after my initial diagnosis and my embolisms on both sides are exactly the same as they were on August 8, but have not gotten new ones and they haven’t grown- had chest CT at Bronson last night.

Doc believes the first embolism may have occurred on July 27th, as I had an ‘attack’ that I thought was a newfound food allergy- but consistent with PEs.

However, it doesn’t sound like they’ve gotten any smaller, either…

I need to see a cardiologist at Bronson ASAP and have a Holter monitor done to find out what is going on, but they cannot do that In the ER.

They seem to think that my symptoms are because of this PE and I need to take it easy until the cardiologist fits me with a Holter- 

I feel very frustrated that I am basically supposed to be bedridden. The doctor said it was more important for me to hydrate than to move around at this point

Hospital cut me loose last night with a long acting beta blocker (metoprolol)- I am only supposed to take a fraction. He wants mr to start with half at bedtime, but I’ve played this bp med game before. I will do a quarter tonight.

I am waiting for the referral to go through with the cardiology department at Bronson in Kalamazoo, MI- which is 45 min from me, but a better hospital than the one around the corner.

Until then, I am basically supposed to act like a vegetable and keep hydrated.

My resting heart rate is higher daily, no matter what I do. This morning I woke up to it being 83 on avg while flat on back. I am power hydrating. My old avg per fitbit was 69-70. It goes up every day now this week. If I stand, it shoots up to 120-130 minimum.

Took over a dozen sticks, an u/s, and 1.5 hours to get a 20 port IV into me so I could have a CT. The head mosquito vascular nurse said I broke her streak. I’m a horribly terrible poke. LOL. Basically, I am the micropenis of the vein world. That’s a comforting thought. 

However, probably the nicest hospital experience I’ve had in years. Immediate, prompt care- real eye contact. Immediate info and they didn’t hold us hostage for 3 days and keep trying to drug me with hysterical Victorian woman meds.

There you have it.

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Still recovering or holding steady

Went to the ER again, this time in Kalamazoo. CT shows that both pulmonary embolisms have not grown, though they’ve not shrunk yet. I am having tachycardia (high heart rate), even if I walk across the room- so I am bedridden a lot, which is not cool.

I used to have to run or workout hard to get to 140 beats per minute- now I can do that walking down two flights of stairs to my kitchen. My resting heart rate is around 81 right now, which is INSANE for me.

I was pretty fit right up til 20 min before my clots (for someone with my genetic and age related crap). I ran, I walked, I was a fitbit freak. I don’t do drugs, I don’t smoke, I rarely drink- but when I do, it is with friends and family- I stopped eating carbs until my surgery. I felt amazing til the hysterectomy… ok, well, I AM a little reclusive by nature. I like just being with my kid and doing stuff quietly. I can’t even do that now.

I was right about the robot trepidation, I guess. They suspect that surgery caused this shite.

I am getting referred to a cardiologist to be put on a Holter monitor- and see a blood specialist about my genetic clotting disorder this week.

I am too stubborn to die. I refuse to leave my little girl. I’ve advocated for patients in the past- it is more difficult to advocate for yourself when you are infirm.

This morning I dreamed of my childhood bestie, Roger. He died about 6 yrs ago, suddenly. Had the same thing the actor John Ritter died from, just fell down and died at not even 40. He’d broken up with his boyfriend some time earlier, but had his room mate living with him at the time, who called the paramedics when he heard it happening.

I dreamed I was in Roger’s old bedroom from when we were teens on Red Arrow Highway in Watervliet. It was empty except for a waterbed and a little dog was hiding under the covers, and I pet it- it was a white small dog, not like the ones he owned that I remember. I had to go in his old closet to get a checkbook and get some of his bills paid- and his old closet was far deeper and larger than it had been. He was nowhere to be found, but I talked to the air and told him his bills were paid, then I saw another old friend (not Rog- and I presume still alive) whom I haven’t seen in over 2 decades- but none of my friends in the house could see him and asked me who the hell I was talking to…

The most comforting thing was seeing my other friend, who I believe is still alive, but lives abroad. It was so real. I put on a brave face to most people and really don’t get into the emotional aspects or fears associated with this crap, but it does scare the shit out of me.

People EXPECT me to be the tough bird, the crutch for them… except for this blog or my other writing outlets, I tend to not let people in. I suspect a lot of folks are like me, IDK.

Life, for me, is stop whining and get the fuck on with it, usually.

I almost died this month, suddenly, from bilateral pulmonary embolisms. I don’t want to die. I REFUSE.

Rog, I love you, but I don’t want to see you anytime soon. Maybe in 40 yrs. XO

My other friend/s. I love you all, too- even the ones I haven’t seen or neglected to reach out to for a million years. Thank you for reading this and I am sorry I have not been updating very often.

 

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Rough morning after 2 weeks of smooth recovery

Been feeling better than anyone could have imagined, with having pulmonary embolisms in both lungs. My lung sounds and functions were clear, my ‘spells’ less so- I felt fantastic… until this morning when I woke abruptly this morning.

I woke up at 6 am, sweating and not able to catch breath. It’s 2 weeks since I was diagnosed with bilateral PEs and I haven’t had a ‘spell’ like this in over a week. I’d been feeling better.

I feel like it burns all the way into the middle of both lungs, hard to catch an inhalation, feel like I have to cough phlegm, but nothing.

My bp is lower than normal 102/80. I woke with tachycardia (fast heart rate) over 120, that went down to the 90s.

I’ve not had spells this bad since the hospital. My pulse ox reads anywhere from 93-98, depending.

I still can’t take a deep breath right now… it’s getting better, but it’s scary nonetheless.

I don’t drink, don’t smoke. I just started getting my steps back up from nil to 7k the last three days. I’m on the ketogenic diet.

When they said recovery is a process with pulmonary embolisms, they were not kidding. I can have relatively normal, excellent days- then BAM! Scary, back to square one.

Some folks in my support group say it takes months to years to recover.

My stubborn self was hoping for WEEKS. I push myself too hard. I am depressed, as much as I can be. Mostly because I don’t like to be idle.

Saw my gynecological oncologist this week and everything in that area is looking great since the hysterectomy. This surgery caused my PEs, btw.

I am too ornery and cantankerous to die. Too much to do… and I have a child to care for.

I refuse to succumb, but if anything happens to me, tell my baby I loved her.

So far, I am told I am lucky to be alive as it is. For this, I am absolutely grateful.

I have so many people I love and have loved. I don’t want to go anywhere.

I want to celebrate being alive. 2018 was rough. I am not the only person in my family to nearly lose their life in a sudden accident this year. We are blessed to be here right now.

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Mourning the impending death of my uterus

 

Not only am I creepily naked and sobbing in the above photos, I am also disgustingly smearing my lipstick, so that it symbolizes the last period I will ever have in my life.

A lot of women hate their periods. I really didn’t until the periods became unbearable. Going into the crone phase, even if it is partial, scares the shit out of me.

Pretty emo for someone of a half-century, I will admit. It’s my crotch party and I’ll cry if I want to…

While my first inclination, as always, is to make snarky jokes about the robots coming for my lady parts tomorrow- I can’t stop crying.

Words fail me.

The fact that I’m having essential organs- parts that are meaningless and useless now- that somehow DEFINED THIS MEAT SUIT for me- removed permanently really is messing with my brain right now.

If I leaned more towards the esoteric, I could just say this is all illusory… this body, this gender, this glove we wear.

I can’t fucking do it. I am grieving, mourning- an anxiety ridden mess.

All the worst case scenarios run through my head:

What if I die on the table?  What if I am that small percentage that has cancer and it causes it to spread?

https://www.usatoday.com/story/news/nation/2014/02/18/hysterectomy-laparoscopic-morcellation-amy-reed/5347093/

Luckily, now very few hospitals combine DaVinci robotic surgery with morcellation:

https://www.hystersisters.com/vb2/showthread.php?t=588404

The entire thing is usually pulled out of the vagina, presumably after the robotic bits sever the organs from their places.

Still, fucking scary.

My friends and family who have gone through this say it’s a piece of cake- I will no longer be in constant pain, I will love it, etc.

As a consolation prize, they will take my fallopian tubes and keep my ovaries- as long as I agree to ultrasounds every 6 months to monitor the cysts. This means I can go into eventual natural menopause and not instant menopause, as I have Factor V Leiden and can never use hormone replacement.

Also, what makes us female? Is it biological, is it physical, is it a dangly bit of spongy flesh in our innards- is it a hardwiring of of hypothalamus? Is it a spiritual choice made prior to incarnating?

WTF IS it?! Do I become some gender fluid, non-pronoun using being after this?

I don’t know why I am so hysterical right now- I just know that I am.

I know I won’t cease to be ME, who or whatever that may be (unless I die, of course).

I surely didn’t freak out like this when they took my gallbladder almost 2 decades ago.

I’m just scared, I guess. Scared shitless.

My stomach is fat, like a woman 4-5 months pregnant- the adenomyosis has me swollen like a tick on a dog.

I feel miserable. This procedure is supposed to make it all better.

I hope it does.

Losing pieces of ourselves, I wonder if zombies feel the same way, if they were real and could think.

“Oh, shit, my whole crotch just fell out… need more brains…”

Yeah, I need more brains.

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I should be blogging, but life & bleeding & Bourdain & grads & ballet get in the way…

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I should be blogging about my female issues, part 2, but at the moment my innards are weeping the bloodiest of tears. I’ve slept so much this week since the endometrial biopsy- and it jump started my period early. I had no idea that simple uterine biopsies could take so much out of a person. The pain is better, the fatigue is not.

My hysterectomy is scheduled for 12 July.

My endometrial biopsy (the first) should be back early this week, the oncologist says.

My son graduated from high school last weekend, I still need to add this to the blog. I am so proud of him.

Maisie has her 2nd ballet/tap recital of her life tomorrow. I will be herding cats/taking care of the tots back stage, like I did last year. Someone has to do it and I’m evolving into a stage mother at this point.

The other crazy things happening in the periphery are dying down, for now. I’ve had my say and will continue to work through this, as a reminder to myself and others- don’t let people walk all over you. There are some seriously chronically messed up opportunists out there- and yeah, while addiction can account for a lot, that still is not an excuse for what was done to us.

I think about Bourdain and his fragility- and the fragility of those around us. This world will eat you up and spit you out if you don’t stand up for yourself and for what is right. Tony Bourdain stood up against the tides, championed his girlfriend’s #metoo cause against Weinstein- and it still wasn’t enough.

I saw a chilling post Bourdain put up on his Twitter on 22 May. It called out some guy re being found hung (I’m paraphrasing) in a lavatory from auto-erotic asphyxiation. It kind of gave me chills. While I don’t know the circumstances surrounding his death any more than the rest of us (a bathrobe belt, found tied to a door)- suicide or accident- neither is preferable.

He had his child at 50. That alone would make it impossible for me to take my own life, but I don’t live in anyone’s skin but my own.

It’s sad, sad, sad in this mad world.

Death comes to all of us, sooner or later. I think about my own mortality a lot right now. I’d fight tooth and nail against it, just like I fight tooth and nail against any other injustice levied against others and myself.

But life goes on, children grow up and graduate and do their recitals and play with their toys. We grow older. We die.

Over and over, in different bodies and different lives, it is all the same. We all share this common thread- even though we believe we’re unique.

We’re not unique. That is the beauty of it. The sameness, the threads that bind us- that’s the wonderment.

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Frauds & Old Broads

I’m too old for this bullshit”

At least that’s what I say

While muttering under my breath

Judging the other old broad

Who is simply clinging to dreams

Long since shattered by genes

and drugs

and other people’s opinions…

“I am too old for this bullshit”

I keep telling myself these lies

While I, too, am just as insecure

Aging not as fast as the other bird

But clinging fast to a pipedream

Fostered by hard work

and artifice

and expensive fucking fillers…

“We are both frauds, you and I”

I will say I’m almost 50

while I pop my heart meds

and stare at my smooth face

in the mirror

made deceptively young

while my insides rot away

like everybody else’s…

“We are both frauds, you and I”

Hiding your real birthday

popping your pills

photoshopping your wrinkles

in photos

made deceptively young

while your soul rots away

with your own delusions…

———————————————–

But the biggest truth this old bitch can spew:
I am still glad I am nothing quite like you

That, too, is fraudulent,

we’re both the same

The only difference

Lies in our pain.

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AU REVOIR, ANTHONY BOURDAIN

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He was a rockstar of the culinary world. Rest easy now, Bourdain.

http://www.chicagotribune.com/entertainment/ct-anthony-bourdain-dead-20180608-story.html

One of the few idols I had left is dead. I watched his shows religiously. Bourdain’s culinary adventures became my obsession- I was able to travel the world through HIS eyes. His show was my foodie porn. What a masterpiece it was!

A few years back, Bourdain filmed his Filipino episode at my former co-star’s flat in Manila. I was so star struck by this fact and pumped my friend for all the info I could get.

My friend said he seemed tired and overwhelmed- or something to that effect. I don’t doubt that at all. His shooting schedule had to be extremely grueling.

CNN reports that he was found dead by hanging, in an apparent suicide, by his friend Eric Ripert. He left 2 ex-wives, a daughter, and his current girlfriend, actress Asia Argento, to mourn him along with the rest of us.

I don’t understand suicide, I wish I could understand it more. This tragedy brings to mind all of those people who survived loved ones that died in this manner. The families who will weep forever over the loss. 

If you are contemplating suicide, I urge you, please rethink it. Get help, there is help available. Don’t let the world mourn what could have been. Don’t let your children grow up without a parent. Don’t let your parents have to bury their child.

When you kill yourself, you kill a bit of everyone around you.

We are all one, connected to each other through our joys and tragedies.

http://www.dailymail.co.uk/news/article-5821039/Anthony-Bourdain-died-suicide-age-61.html

http://www.dailymail.co.uk/news/article-5821861/Anthony-Bourdain-smiles-swigs-beer-Asia-Argento-final-video.html