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

CBHNBKSWYAE0HUF

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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The Decline of My Kishkes, or Retroverted Uteruses & Reproductive Health Scares Part I

Screenshot-2014-11-01-21.34.33

I have a tipped/tilted/retroverted uterus and it can be annoying, to put it mildly

WARNING: THIS POST MAY CONTAIN GRAPHIC AND/OR HILARIOUSLY DISGUSTING DESCRIPTIONS OF DOCTOR’S VISITS, BIOPSIES, RETROVERTED UTERINE ISSUES, AND ADENOMYOSIS/CYSTIC OVARY SYMPTOMS. IF YOU CAN’T BEAR TO READ STUFF LIKE THIS- SPOILER ALERT- GO AWAY NOW.

“Pet Peeve #545:

When ALL your specialists and primary care doctor feel your issues are gynecological, yet your male gyno thinks everyone is wrong and refuses to listen to you OR EVEN TEST YOU until you stick a proverbial foot way up his ass”

This blog started out primarily because of my freakish reproductive system (hint, Maisie).

It is only fitting that I update the trials and tribulations of my nearly 50 year old reproductive organs.

Let me preface this by saying, I am not in menopause and my body doesn’t seem to know it is a-coming. My menstrual cycle is consistently 28-30 days.

I also was born with a retroverted/tilted/ass backwards uterus. Such conditions can worsen over time from childbirth or other uterine issues.


According to Wikipedia, it is defined as:

A retroverted uterus (tilted uterus, tipped uterus) is a uterus that is tilted posteriorly. This is in contrast to the slightly “anteverted” uterus that most women have, which is tipped forward toward the bladder, with the anterior end slightly concave.”

“Tilted posteriorly” means tilted towards your ASS, ie, posterior. Mine is particularly tilted waaaay back, which makes basic bodily functions more difficult over time- more gross details to follow later.

Oddly, I started having some very strange symptoms that became progressively worse in the years after Maisie was born. I went to specialist after specialist to no avail. Gastro docs, urologists, nephrologists, rheumatologists, gynecologists, pain specialists who simply wanted to get me hooked on pain pills, which I refused- nobody could figure out what the hell was wrong with me.

I had lower back pains and kidney infections that did not start out as urinary tract infections- and I’ve never really had bladder infections prior to this, though I’ve had kidney stones before. They kept coming back, no antibiotic seemed to help. My doctor sent me to every specialist she could think of. My bowels stopped working regularly. I had to take massive stool softeners and even that didn’t always help. 

Everything, every test came back normal. I was starting to feel like I was losing my mind, but I KNEW something was wrong.

(for my rant on what I pay for my crazy expensive healthcare insurance, go here)

I KNOW my body and I am pretty much a health nut. I live a Ketogenic lifestyle. I rarely drink and never have been much of a drinker. I don’t ‘party’. I love to cook healthy meals. I work out a lot- I am a FitBit freak and try to get at least 10k-20k steps a day, mostly for the endorphins. The few prescriptions meds I must take, for high blood pressure (another genetic pain in the ass) and GERD, I do religiously. I don’t have depression.

I mean, I HAVE to take care of my health. I had a baby at 45.5 and I want to live to see her grow up. There can be NO room for error at this point. My child needs me to be healthy.

In mid-December 2017, my primary care physician ordered an ultrasound of my pelvic region. The results were complex septated cysts in my left ovary, thickening in my uterus, etc. Complex septated cysts are considered a bit more dangerous than regular ones.

My paternal grandmother died of ovarian cancer at my exact age. Her daughters and one son all carry the BRCA1 mutation. 3 out of the 4 girls had BRCA1 breast cancer. My father was fortunate- he was the only child out of 6 to not have the mutation. Unfortunately, even though I am not a carrier, this still increases my own chances of gynecological cancers.

A MRI was recommended as a follow up. Because we couldn’t get the MRI approved by the insurance company, we had to go with a 6 week follow up ultrasound.

On top of this, I take care of my family- and I mean everyone, including extended family. I am the medical POA for many and the patient advocate for the rest.

I spent months in San Diego this year (and the end of 2017) sleeping in a trauma unit with a family member who was in a catastrophic motorcycle accident- and taking care of them once they were discharged. I only came back to Michigan because of my own health issues.

While in Encinitas, CA, I had my follow up ultrasound at Scripps hospital. It showed no change in the cyst size, but my uterus was getting larger, with new polyps and fibroids and thickening of the uterine walls.

Armed with this info, I sent the ultrasound results to my primary doctor in Michigan. She felt it was urgent that I come home and get this checked out, since my ‘fancy’ insurance didn’t work in the state of California and my pain and symptoms were worsening by the day.

We set up an appointment for March with a gynecologist and I forwarded all of the info from CA to his office a month ahead of time.

I planned for fly back home to MI in March for my scheduled appointments and be back in CA to take care of my family member after the appointments, as they still could not care for themselves.

It didn’t work out this way.

Little did I know, there was going to be a fight on my hands just to get my MRI and to be taken seriously, as his staff did not put the 2nd ultrasound in my chart…

(to be continued in part 2 with the discovery of adenomyosis, cancer biopsies and testing, and my journey towards hysterectomy)


 

 

 

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Je houdt alleen van jezelf…

I knew a girl who went to Boston

Opportunity knocking at her door

Dreams of editors to save her soul

That she’d known once before-

 

So she planed this glad reunion

And wanted so to be his muse

Said the kids would stay in Europe

With their papa, what the deuce?

 

I cannot fathom heartless women

Who leave their families in dismay

Chasing dreams of lust and scandal

While motherhood slips fast away

 

We should let this be a lesson

Hold to ourselves those most dear

Instead of freaking drugs and aging

When abandonment is surely near 

 

The moral of this little story

Jotted down by this kind elf

Is the truth, when you tell them

Je houdt alleen van jezelf 

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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.