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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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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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Court or No Court? Consent or No Consent? Panic Attack or No Panic Attack? PLUS UPDATE and VLOG

Trying not to have a panic attack right now… woke up to a call from the social worker at the psych ward my mother is currently in. Apparently, she can’t tell me much, due to some confusion as to whether or not my mother has given consent to release information.

HIPAA law is an asshole, in my opinion, at this very moment.

I am her POA (Power of Attorney). I’ve been having her ‘flag down’ a nurse every time I talk to her to give VERBAL CONSENT on the telephone since she’s been in this facility.

We did not have this type of runaround at Pine Rest, so it is very frustrating.

Things my mom’s current social worker DID/was able to tell me:

1. No, my parents aren’t compelled to divorce as per the group home owner’s questioning.

2. She is compiling a list of ‘safer’ homes that would be (in their mind) a better fit. AFC homes aren’t locked facilities. The doctor recommends a locked facility right now, as she is not stable on meds.

3. When I asked about the paper I received last night re: the mental health court hearing on the 6th, I was told that I should contact the court house- specifically a person in the probate court that the hospital itself deals with.

Apparently, there may not even BE a court hearing that day, as she was given 3 options and one was to waive the hearing- which would mean she would be agreeing to treatment.

UPDATE:

Left a message with the guy the social worker directed me to and received a call back. He confirmed that my mother had indeed met with her court-appointed lawyer the other day and signed a waiver agreeing to comply with medical treatment… when I asked if this means I should still pursue the guardianship or not, I was told to absolutely do so.

Now I have to go to visitation tonight and have her sign a written consent form to allow these people to talk to me.

I am really anxious about this, all of it.

Pursuing guardianship is a lot of work and a lot of responsibility. I do already make almost all of the health decisions and do the legwork for my parents, but not in any official sort of capacity. My sisters don’t want the responsibility- they live far away and are very ill themselves.

Leaving guardianship up to a stranger would be unhumane and irresponsible, in my opinion.

I am going to vlog the rest. This is too much too type for me this early in the morning.

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I am have been gone for quite a while-

My sister still has cancer, my mom is in a facility getting her bipolar/dementia meds leveled out, I am going through serious family problems and experiencing long term ptsd as a result of past child abuse.

Maisie is doing wonderfully! She is in Montessori school and is three now. She also does ballet/tap and adores it.

I have been on a ketogenic diet this year since July 10, 2017 per my cardiologist’s suggestion. I have also been using/wearing a fitbit charge 2, which has absolutely changed me from sedentary to active and I love it!

I am starting a vlog to chronicle my keto journey and just to be able to vent… xo

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Something horrible happened to us yesterday- If you have a parent with bipolar and/or dementia, you’ll understand- maybe

the boys and maisie before the shit hit the fan yesterday

the boys and maisie before the shit hit the fan yesterday

I am super exhausted and depressed today. My lupus is flaring from the stress and I can’t get out of bed.

I will probably get a lot of flack from relatives for posting this, but I simply don’t give a SHIT. I cannot fathom bottling this up and hiding this like we have for so many years. It’s killing us all.

I am rarely ever depressed and spent most of yesterday crying- so did my oldest son, Sam.

My lack of depression is due to years and years of therapy, high doses of vitamin D3 (NOT antidepressants, they don’t work for me), and changing my mindset/lifestyle.

Yesterday was my youngest son, Connor’s, 17th birthday. For the first time in years, all three of my sons were home for this occasion.

Connor's birthday yesterday- he loves his Papa so much

Connor’s birthday yesterday- he loves his Papa so much

Sam, the oldest, recently moved home from Chicago, where he’d been at college and living for quite a few years. Jay, my middle, spent a year at college in Houston, TX with his father-before that, he’d been living on his own. Only Connor and Maisie are at home now.

My mother has battled her entire life with Bipolar NOS. When I say “battled”, I mean she mostly battered US when she lost her mind and had her cycles, because she surely didn’t get help for it. There was nothing to be done about it when I was growing up- psychiatric medications and treatments simply did not exist as they do today. To compound things, she now has early dementia at 71- which is likely due to small strokes from her Factor V Leiden genetic clotting disorder (which I also have and take heparin daily to prevent. I had 2 small TIAs- little strokes- before being diagnosed). Her memory isn’t the greatest, at least the short term. Her long term has always been selective at best as well.

Little things have ALWAYS ‘triggered’ her. To her credit, she’s been much less violent since getting older/dementia, but it’s still no cakewalk.

When she is “GOOD”,she is funny, charismatic, charming, engaging, loving. When she is “BAD”, someone may end up in the hospital, things destroyed, people may get hurt physically.

I feel so horrible for my poor father, who has always had to care for her and now is in bad health himself. She leaves on the 21st of September to go back to the Philippines and we’re all waiting with baited breath for this.

I have a unique form of PTSD, my therapist says, due to years of abuse from her. It is called “Complex PTSD“.

When she goes off, I FREEZE… and fall to pieces, as if I cannot defend myself at all. Oddly, if anyone ELSE tried the same shit she did to me, I would defend myself and others probably to the death. I am so not submissive- except with her, I turn into a scared, anxious, frightened child again. What I have is not uncommon in people who suffered long term physical and mental abuse as children- and luckily, I am not as bad off as my poor sisters.

As a result, I want better/calmer/more peaceful for my own kids. I cannot live like this anymore. I can’t. My older 2 were exposed to her/my mom helped raised them and the oldest is very like me in his responses- the middle is EXACTLY LIKE HER, down to the bipolar and rages. Connor was not around her much during her worst times/when he was small because I lived in Wisconsin. He’s probably my most well-adjusted kid. I am a much different type of parent with my younger children than with my older 2. I feel guilt and shame when I think back and realized that I ALLOWED my mother’s ‘wisdom’ and will to color my parenting style- and that I left them with her at all, truth be told.

Now she also has dementia on top of this and my dad and I are the only caregivers she has in this country. My siblings won’t help- they live too far away and she’s much more abusive to those girls than to me. My oldest sister can handle her to a certain extent, but the poor woman recently was diagnosed/is going through a horrible lupus flare and works 12 hours a day.

So, anyway, yesterday I tried to make EVERYTHING perfect: I baked Connor’s favorite- a New York Cheesecake with sour cream topping. R bought cookies and snacks for my mom. The boys tidied up the house, made coffee in preparation for their grandparent’s arrival. It was just the children, my ex, R, and my parents. We were so excited.

Poor R hadn’t showered that day and left his ball cap on because he felt grubby and had been running around town buying last minute gifts and food goodies. The boys rough housed in the dining room like old times. My oldest, Sam, got on the piano to play “Happy Birthday” so we could all sing while Conny blew out his candles.

My parents arrived and mom sat down. R came from my office with his hat on. She yelled at him that it was disrespectful to wear a hat indoors and he said “I haven’t showered”- AND SHE LOST HER FUCKING MIND ON HIM.

So, R STORMS out, the door slams- which isn’t like him at all, but she is always mean to him, calling him “That fucker”, etc. She starts screaming at ME, at Connor, at EVERYONE. She SCREAMS at Jeff about him ‘allowing’ R in our house and Jeff says quietly to her: “Mama, I have no idea what’s going on”- so she screams more and chucks her car keys at his face.

In the midst of this, I am behind Jeff and holding my baby in my arms. I see the knife near the cake and whisper to Connor- “grab the knife, please hide the knife”- because I HAVE SEEN HER TRY TO STAB PEOPLE IN THE PAST. I am getting yelled at and holding my baby and looking at my feet, scanning for escape routes just in case, just flight or fight mode x10000.

My older sons eventually somehow get her out to the porch and try to calm her down. Jeff says to me “I want her to leave”, but nobody makes that move. I can’t call the police, because she has DEMENTIA on top of this and my father can’t afford the damned bill of hospitalization again so close to her departure date for Manila. Dad ended up finally taking her home and I spent the rest of the night worrying how he was faring at home alone with her, but I did not dare call him lest it cause her to go insane again.

It went from joy to feeling like a fucking FUNERAL.

We eventually were able to blow out the candles and let Conny open presents, but his poor face was so sad. I won’t even post the videos. They make me cry every time I watch them. We took C out for a huge dinner at our favorite restaurant. He received a new Xbox One and tons of games for his birthday, which he did not expect at all.

I kept having flashbacks to an earlier birthday party at our old house, many years prior- I think it was Sam’s- when she threw hot coffee in my face and I had to lock myself in the bathroom and brace the door closed with my legs while calling 911 because I LIT THE BIRTHDAY CANDLES BEFORE SHE TOLD US TO. This was when she was still reasonably young and healthy…

…or the time when Sam was 4ish and Jay was a year old and I lived at their house. It was winter and I wanted to take them outside to play in the snow. Jay was bundled in his little snowsuit and Sam was almost ready, but she lost her mind because we COULDN’T FIND A GLOVE. I was not dressed, barefoot, in the snow holding my baby. My father was outside, too. I had a DREAM OF THIS EXACT SCENARIO A MONTH PRIOR BEFORE THE SNOWS CAME AND TOLD MY DAD ABOUT IT- in my dream, she shot us all and our blood was over the white snow. My dad called it bullshit when I told him about the premonition…

Dad and I were in front of the house and she came outside. Dad held baby Jay and she tried to beat my father with a snow shovel. She abruptly went back inside the house and I exclaimed “OMG DAD, THIS IS EXACTLY LIKE MY DREAM I TOLD YOU ABOUT!!”- so he tosses the baby to me and sprints to the barn.

I only got as far as to hide behind the tire of one of the cars with my hand over my year old baby’s mouth.

I hear the door open and I see her with the shotgun and she is SCOPING. Suddenly, I hear shots fired- I peep around the corner of the car where I am crouched and SHE IS SHOOTING INTO THE PUMPKIN PATCH.

She went back in and I ran to the barn where dad was and said “WE HAVE TO CALL THE POLICE- WE NEED TO GET HELP” or something similar.

He agrees and I walked BAREFOOT IN THE SNOW through the woods holding my baby- where she cannot see me (we lived on an isolated 20 acres, about 1/8th of a mile from the road) to the neighbors… and called the cops (this was before cell phones).

When the cops came, my dad told them I was lying.

Did I mention that my dad was ALSO a cop?

When I asked my dad later why he lied to them, his answer was:

“What good would it have done anyway? It’s embarrassing, yadda…”

So I took my children to my best friend’s and moved far away for many years.

Since my middle son started to go through similar as a teen, I have been a HUGE ADVOCATE for getting healthy mentally/mental health screening/therapy. My father never came around and didn’t support this at all until my middle boy moved in with him and he had to go through this himself.

Hiding and making excuses for mentally ill loved ones is DANGEROUS AND LONG LASTING IN IT’S DAMAGE.

I am still crying typing this. I can barely function today.

I hate untreated bipolar. I hate abuse. I hate dementia. I hate living in fear.

If you want to beat someone- become a dominatrix. If you want to be beaten, hire a domme.

DON’T FUCK INNOCENT PEOPLE’S LIVES AND YOUR OWN.

My 2 stories are mild ones in my family. I have more that are far worse.

If anything resonates with you, if you’ve been through the same, I send you hugs.

If you are like this- get FUCKING HELP NOW- YOU *CAN* DO IT. DON’T WAIT TIL IT’S TOO LATE AND YOU’RE 71 YRS OLD AND HALF YOUR FRONTAL LOBE IS GONE.

End of my rant.