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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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When I am coherent again, I have to talk about the body shaming going on STILL in 21st century reproductive healthcare

When I am coherent enough, I am going to blog some super TMI issues re women’s health post hysterectomy.
 
I am really shocked and alarmed by the ignorance of the ‘counselors’ at my oncologist’s. When describing symptoms, after having to google a lot of things on the wonderful site Hyster Sisters, I had to refer the damned PA to the site.
 
Every time I mentioned something, her response was “I never heard of that”. I felt body shamed. I had to tell her to go to the web boards and google it herself, so she would not have to use those words again with someone else- someone perhaps a bit more trusting of her doctors and less able to do their own research.
 
Same thing happened in Borgess after I couldn’t urinate when the catheter was removed. I had a male AND female nurse with me and I said:
 
“This is a bit TMI, but the only thing I can liken it to- and I’ve never had any issues peeing after previous abdominal surgeries- is when a person has an orgasm and cannot pee after from the swelling”
 
Well, shit. The female nurse turned BEET RED and I was left with the male nurse, who was patting my hand and commiserating with me. The female never came back, btw.
 
WHY are women in the 21st century STILL too scared to talk about their bodies?! WHY is it taboo to mention things to your own health care providers?!
 
Eff this shit. There needs to be a change.
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Bored and In Pain- Send Slaves in Loincloths and Amazon Gift Certificates

Me (to R): “What are you feeding me? I feel so full”
 
R: “Hon, I keep making you drink protein shakes when you take your meds- you haven’t actually eaten today”
 
Ok, weird. That works, too.
 
I’m groggy. I’m bored. I feel accomplished when I get 250 steps.
 
I am not a good patient. I want to go swimming (can’t for 2 months), take a long bath (can’t for 2 months), and am bitching that R hasn’t sent me long love letters while I am incarcerated (in my bedroom).
 
The only sports I am allowed are power farting (encouraged) and being able to use the toilet without crying (also encouraged). I am, however, not good at either of these sports currently.
 
I am not allowed to lift anything heavier than a cup of coffee and technically not allowed to bend myself in half.
 
HOW THE HELL DO YOU STOP YOURSELF FROM BENDING IN HALF?!
 
From R, just now:
 
“She is such a sweetie. Her thing today is “you’re a good cook Daddy”
 
Every time I give her something to eat”
 
Yeah, I’d probably say the same, if he brought me a margarita. Or coffee. Or anything besides a protein shake and sedatives.
 
If anyone wants to send me long love letters, while I am incarcerated to my bedroom, at this point and on the meds I’m receiving, I may only think it’s kinda weird and may or may not laugh.
 
I’m bored- so bored.
 
I’d love a makeover, to wear furs and all my jewelry, and to be fanned by slaves in loincloths.
 
This would also probably bore the fuck out of me.

Also, amazon.com gift certificates would be great.

Yeah, I am a horrible patient. Laying here is driving me insane.

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this is actually from the day of surgery. no makeup. no fake nails. au naturel. yay… Not bad for almost a half-century. I’m ok with it.

 

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today’s post surgery updates

1. no, I am not well enough to do x, y, z
 
2. I am in pain, still. Called my doctor, waiting for a returned call.
 
3. If you’ve asked how I am, I am mostly sleeping. If you haven’t asked and think I should be recovered from this now, then f*ck off. Forever. Don’t pass go, don’t collect $200 dollars. Not having a good day today.
 
4. I cry a lot. I didn’t expect that part. This wasn’t easier than gallbladder or c-sections. Maybe it was the fact that they took my cervix and tubes that made it a bit worse- or the fact that they had to shove a huge piece out of a too small incision, from what dad and R told me (as I’ve not spoken to my doctor since before surgery).
 
5. I feel like I’ve been stabbed in the abdomen multiple times and I am still bleeding through the dressings.
 
6. I am not dead, people can text me or message me. Unless you’re one of the few that seems to want a reading, then you can forget I have a number.
 
7. My belly swelling is going down. It’s bruised nicely.
 
8. Food is gross. All food. I had to negotiate down to 1 piece of toast this morning to take my pain meds. I don’t feel the need to eat two pieces of what taste suspiciously like charred assholes, hair still on.
 
9. Told R to stop trying to give me a menu. If I have to eat food with my meds, just bring me the minimum and don’t torture me with the prospects.
 
10. GasX is amazing. If you ever get pumped full of CO2, you will want to eat these things after, just to keep you from screaming in pain. Gas pains are hideous.
 
11. Please send me funny memes. Anything funny. IDGAF how tasteless. It’s boring being bedridden.
 
12. Pooping is miraculous after abdominal surgery- and appalling. All hail the workings of the kishkes. Once they start functioning again, it’s like the heavens have opened up. If the ‘heavens’ were closer to your rectum, that is.
 
13. I cannot discuss food right now, people. I don’t like it, possibly for one of the rare times in my life. Even the thought of it makes me wanna puke.
 
14. I love coffee. Coffee and tea are the only two things keeping me sane right now.
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day 3 post hysterectomy and I am absolutely miserable- and thank you to everyone who’s sent msgs and balloons and flowers etc

nausea, dizzy, sleeping all the time, horrible pain.

Yay!

I will try to post my very loosely written diary soon when I am coherent enough to do so.

Thank you to those who have sent the loads of flowers and balloons xo. Maisie has been caring for the balloons personally.

I am not in the most communicative of moods right now.

Doc sent photos of my uterus and ovaries and tubes… will post them when I am able.