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Bilateral Pulmonary Embolisms (blood clots in lungs)- in pain and in hospital, but still alive, so far

I haven’t been updating my hysterectomy saga, as I’ve been recuperating- or trying to.

Almost died this week, and am still in hospital. I have Factor V Leiden, a genetic condition that makes me prone to blood clots- and they formed after my surgery.

More:

I am in shock.

Dr came in, they found two blood clots, on either side of my lungs. One had already burst into many bits- or ‘fillings’-I am being put on Eliquis to dissolve them and must be on this med for at least 3 months… then I see the hematologist again after.

It feels like pneumonia or bronchitis with a bloody copper taste in my mouth- stabbing pains, numbness, shortness of breath, and chest pains.

They are likely a result of my surgery and Factor V Leiden.

I am very fortunate, as they somehow bypassed my heart and didn’t kill me instantly. I had been having chest pains and difficulty breathing everyone at first presumed was anxiety.

They are keeping me at least another day or two for a heart study, to make sure I don’t have a hole in my heart.

(Update: heart is great, no holes)

MRI of brain is clear of stroke, thank goodness. My headache is still crazy bad, so they are going to give me toradal once and put me back on my usual bp meds.

I KNEW something was wrong- when they say ‘feelings of doom’, it is real. I was worried I wouldn’t be leaving here at one point today. My chest hurt so badly. I try joking things away, but this is still a bit of a shock to me.

As of Aug. 9, still in hospital. I just had another chest xray, pain comes and goes and I sometimes feel like I am suffocating. Doc says this is definitely from my surgery. Even on lovenox injections, these can still form. SO scary.

FYI, I am not wanting to die.

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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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Update on the crazy wasp sting

More on it here: https://missmaisieandme.com/2018/06/17/breaking-fast-and-going-back-on-tomorrow/

Took 25 mg of Benedryl after the initial sting today- and it helped a ton, though I had very little energy.

So, I somehow got almost 2 hours of cardio (to date), mostly while I slept. I also had super low blood pressure at the same time- so weird.

Thinking this was PROBABLY not a good thing, I texted my doctor.

Since the site where I was stung (paper wasp inexplicably on my Windex bottle- I reached with my right hand, it stung my middle finger- how apropos!) didn’t swell and I could still breathe, she said to take TWO Benedryl pills (50 mg). I was not to take my usual blood pressure meds (Lisinopril, damn my horrible genetics) until the morning, if my blood pressure goes up by morning, that is.

She called in an Epipen to the pharmacy for future snafus.

So, for now, still alive. Maybe not kicking. Pissed off it put a dent in my day.

I am a freaking health nut so I stay alive. I will be damned if a little Windex fetish’d insect will fell me like a log.

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6 Day Water Fast Journey Log – 14 LBS LOST IN 6 DAYS!

UPDATE: LOST 14 LBS IN 6 DAYS!

I decided to water fast again because I’ve attempted and failed so much lately since being diagnosed with my female issues.

I still haven’t heard back yet from the oncologist to see if my first biopsy was malignant or benign, so it’s a bit nerve-wracking.

I am doing this primarily for spiritual reasons- this year has been incredible intense, with some negative things that I am not used to. I also gained 20 lbs since coming back from California in March, so that is also a motivator. It’s been really difficult for me to stay keto lately… I tend to eat my feelings, even if I am generally pretty active. My activity level has also plummeted in the last month.

Doc says my uterus is enlarged to the size of a 3-4 month pregnancy at the moment, so this probably also has a lot to do with my weight gain issues and bloating.

Mostly, I want my body to heal itself before my surgery and I want to reset my immune system.

Water fasting, from my previous experiences, has always been the best way to regenerate yourself.

I am a huge believer in intermittent fasting, cleanses, juice fasts, and the most extreme version: water fasting. In the past, I’ve gone up to 40 days on various cleanses, multiple times, and kept my autoimmune disorders in check by diet and fasting alone.

A word of caution: if you are prone to eating disorders or are already too skinny to begin with- I don’t recommend you do this. 

I have never in my life been ‘too thin’, as I am naturally muscular and more prone to gaining a few pounds if I don’t keep a strict eye on myself, but I’ve always been able to drop weight when needed as well.

It’s getting more difficult the older I get, so the activity had to be adjusted to match my infernal appetites (I eat like a farmhand).

Periodic and intermittent fasts are a great way for the body to rest, heal, restore. It’s also almost spiritual and relaxing for me.

I started my fast on 12 June 2018, after seeing pictures of myself at my son’s high school graduation. Yikes!

I will be keeping this as a journal and not posting this until it is completed… so here goes:

DAY 1 (JUNE 12) IDK how much I weighed on the 12th, but last week when I was at the doctor, I was 20 lbs heavier than when I left San Diego in March. Experienced some intense headaches at night. I am not typically prone to headaches. Wasn’t very hungry.

Imbibed 130 ounces of liquid. Got just a tad over 10k steps for the day and 62 minutes of exercise.

DAY 2 (JUNE 13) DOWN 7 LBS FROM MY DRS OFFICE VISIT LAST WEEK OVERNIGHT!!!  I realize I didn’t lose that much, obviously, but I will take it. Woke up with a crazy caffeine withdrawal headache. Felt good mostly, but tired and had to nap. Spent most of the day in and out of bed.

Was starting to get hungry from watching all the Anthony Bourdain memorial shows. I honestly DO NOT RECOMMEND that you watch food shows or read about food during the first days of your water fast.

Drank 124 ounces of liquids. Did 50 squats with a band. Got 11k steps on the Fitbit and 52 minutes of exercise.

DAY 3 (JUNE 14) down 2 MORE LBS this morning- 11 lbs away from my California weight.

Today I was a bit dizzy and out of sorts, but spent it scrubbing and cleaning my porch. That is a lot of work- plus we repainted furniture, painted some new art, cleaned the inside of her playhouse and bleached it… then I made a little bed for her and Filipino style kulambo mosquito net from scratch out of pink and purple tulle.

I wasn’t able to hit my 10k steps, but I don’t give a shit because I worked my tail off. I actually don’t know how I didn’t hit my step goal, I barely stopped moving today. I will be super sore tomorrow.

I am not going to lie- today sucked, especially the evening. I laid in bed and was SO hungry for the first time since the fast began. Will definitely be staying away from Anthony Bourdain episodes tonight.

Drank 120 ounces of liquids. Did 40 squats, with and without a band. 8500 steps, which is far below my usual Fitbit count. I also found my old mini-trampoline rebounder and set it up for Maisie- we spent a lot of time bouncing on that thing- which is good for the lymphatic system.

DAY 4 (JUNE 15) down another 2 lbs (total since drs appt, which is probably not accurate, is 11lbs less than my drs appt last week).

Had a bit of a headache when I woke, but slept an entire 8+ hours, which is unheard of! Spent most of my sleep state dreaming, dreaming, dreaming. I love dreaming, for the most part. I guess everyone does.

I haven’t had any BMs since embarking on this journey, so I took some potassium and magnesium today. My uterus is laying on my bowel, which is another reason for it to have to come out, so I already have issues. Let me just say- the potassium and magnesium worked a little bit too well. It actually interfered with my day, lol. While I was pleased that I was no longer clogged up, I was not happy with the repeated running to and fro the loo.

Feeling good so far, going to work outside today (can you tell, I update this journal haphazardly? I just post my daily updates to this fast journal as it happens or after)

-Endometrial biopsy of my uterine lining came back negative for cancer!

That being said, they still want to go ahead with the hysterectomy, as I have severe adenomyosis- and they still have to actually biopsy the rest of my tubes and uterus as well, once removed.

I am not looking forward to the 2 month recovery time. Hoping this fast helps get me down to my pre-MI weight, so I can recover without gaining.

-I am finding myself to be more tired as the day wears on, even though I haven’t gotten out of bed and it’s 2 pm already. I am also a bit hungry- was hoping this would go away soon.

As the day wore on, realized hunger wasn’t abating. Everywhere I looked- food or food references. I was scared I would break. I didn’t. I also didn’t eat the neighbors, children, relatives- and much to his regret, R.

The idea of going to bed at 8 pm sounded really great, but I had to get 10k steps today, minimum. I missed my step goal yesterday and I hate not meeting my goals.

All that being said, today sucked by the evening. Probably worst day so far on fast. Lots of detoxing. This ain’t my first rodeo- I know if I push through, I will hit the sweet spot. It’s just getting through the detox phase that really blows the most.

Imbibed 120 ounces of liquid. Did 50 squats minus the band. Gardened ALL day.  Got about 13,500 steps on Fitbit and 69 minutes of cardio.

DAY 5 (JUNE 16) lost another 2 lbs– back in CA range- 13 lbs gone so far!  I look thinner because I am not lifting weights, though. I will gain at least 5 lbs back after I go back to keto, but regular IF should keep the weight loss and good benefits humming along.

My REM sleep has been off-the-charts since starting my fast. It is so nice to sleep now. I sleep MORE at night now that I am fasting, which is a great thing.

Woke up hungry, again. Am waiting for that blissful loss of hunger part of the program. It usually kicks in by now. Blah :/

Later, was not really hungry, but super tired in the afternoon. Having trouble getting my steps and getting my work done. I am detoxing heavily and really need a nap. I may have to take it easy on myself today, but I have houseguests coming in a week and I need to get this house cleaned.

Discovered that LaCroix key lime tastes exactly like key lime pie if you haven’t eaten in 5 days- and not just like bubbly water a key lime pie farted into.

Today was foyer day (yeah, I have a huge 106 yr old house)- I cleaned the LL Bean Waterhog mat, with the help of Miss Maisie and youtube tutorials- and we scrubbed and polished woodwork and mopped. My three year old LOVES to help clean. I loathe cleaning, but soldier on because of her joy in doing it.

 

The guys also helped, when I decided I could no longer stand and needed a bit of a nap, just before 7 pm… which lasted til 8:30 pm.

I am really thinking of breaking this fast early and going back to intermittent fasting and keto. I have been detoxifying really hard- this is probably the most intense fast I’ve ever done in my entire life. I feel so weak tonight, like I am dying. I know if I power through this, it will be ok. Still, if I quit before 10 days, this is still the longest fast I’ve done in years. It’s all good.

I think part of it is my inability to allow myself to rest- my brain says  ‘get those steps’, when my body says ‘lay down, damn it, and REST’. What usually made for successful fast before (pre-fitbit) were days and days of allowing myself to lay in bed and ride it out.

Here are links to the stages of fasting:

https://www.globalhealingcenter.com/natural-health/stages-of-fasting-what-happens-when-you-fast/

http://www.anti-aging-plan.com/en/fasting_by_stages

Tomorrow is Father’s Day and R is enticing me to quit this by offering to make low carb enchiladas (a dish I never had in my life til this year) and a big breakfast.

I am now torturing myself and fast by watching “Parts Unknown”. I adored Bourdain. He was a snarky asshole and his shows were charming. I am a snarky asshole foodie, so he appealed to me even more, in the way people recognize their tribes.

Tonight’s episode is from season 8, with Eric Ripert- a Sichuan odyssey of burning spices and cultural musings- and sadistic torture of Ripert by Tony, which I love the most.

One can almost imagine the hellacious heartburn and anal ring burner after these men consume staggering amounts of chili pepper flavored foods. It MAY keep me on my fast, after all.
Imbibed 124 ounces of liquid. Did 0 squats today- screw that. Cleaned foyer like a madwoman.  Got about 10,500 steps on Fitbit and 52 minutes of cardio.
DAY 6 (JUNE 17) Lost another 1 lb- so down 14 lbs in 6 days. Going to call it quits today and get back to intermittent fasting and keto.

I expect to gain back 3-4 lbs once I start eating, but short IF will keep it off and get weight lower.

Woke up today with minimal pain, which was a first in EONS.
Means my inflammation is probably down and my immune system is feeling better.
This was tough. It reminds me to stay keto in the future. Eating improperly is so bad for inflammation and the immune system.
I am back within 6 lbs of my California weight, so the rest should be easy to drop. I need to the energy to clean house as well, as I have a houseguest coming this week.
Not going to lie, this was the hardest fast I’ve done- and I’ve done loads of 10-20-40 day fasts- pre- Maisie. I’ve only done short 1-3 day fasts and intermittent ones since her birth.


I love how much thinner I look and feel when I wake up. Indeed, even with the annoying bouts of dizziness, I feel pretty damned good on the whole- when I am not in crazy detox mode. I am not much for letting myself get ‘too thin’, but the bits of me that harbors a lot of pride in my looks enjoys it when I am curvy and feel sexy and fit.

Aging, for me, hasn’t been a huge issue psychologically. I feel stronger and clearer the older I get. I am certainly happier, with more joie de vivre. I like the evolution of my face, the character of it. The increasing innocence that has crept in since Maisie’s birth.

However, I have to maintain a certain weight to feel my best- and that is generally 140-150 lbs. Any less and I look emaciated. I am built like a brick shit house French pony- muscular and strong. Thank goodness. I eat like a farmhand usually and move as much as I can possibly muster.

Fasting is amazing, even with it’s drawbacks and psychological tortures.

TOMORROW, I will hopefully do a short 2 day fast, then ease back to the 1 day one, 1 day off intermittent thing combined with keto.

I only have 5 lbs to lose to get to the CA lowest weight- and 15 to get to pre-preggo weight.

I’ve been heavier than I was before the kid for nearly 4 yrs now, so I’m not sweating it as much. I like the way I look.

It is more important to FEEL good, in my opinion. Healthy is what I am aiming for.

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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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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)