zeptember

At the beginning of last month, my friend’s brother told me about the Budwig diet in relation to helping me with the Endometriosis. I couldn’t find the books in the local libraries, so I ordered them.

Yesterday was my first day trying the Budwig recipes and you know, they’re pretty tasty! Though there’s no meat, so I was pretty loopy all day yesterday because my blood sugar was going WTF?
I’ve incorporated more nuts and a protein bar today.

I can’t seem to find coconut fat - it’s a main ingredient in the Budwig diet. I’ve gone to two chain stores and called a third. I was directed to a Latino grocery but I only get a fax line there. I just called a health food store in Pacifica that I used to frequent when I lived over that way, and they have coconut oil, so I’m gonna go check them out this weekend.
In the meantime, I’ve omitted that recipe, even though it’s one of the primary parts of this diet.

There’s other changes, too. Like, I can’t have cottage cheese - it brings on the pain even before my cycle is due. I’ve been subsituting yogurt in place of cottage cheese (the book says I can do that). I can also have the small amounts of milk called for in recipes - it only make my stomach gurgle and I can live with that.

And the Linomel™ meal - I might still need to order that. In the meantime, I’ve been creating it myself with flaxseed meal, some milk and some honey, cuz that’s what the Linomeal is made of, anyway.

Today I’m not so loopy. My blood sugar feels stable.

All of this is just another step in the series of holistic self treatment for the Endometriosis and cancer prevention. And for years I’ve had GI tract issues anyway, so this diet can only help with that. Of course, I’m definitely hoping that it helps calm the Endo.

SnotFest invaded our home on November 24 and slew my man for two weeks. Three days later, SnotFest hit me for a total of five days, with three really bad days.

Our household appeared to be Snot Free from December 8 - 14.

On Friday December 14 or Saturday December 15, I woke up unable to breathe again, and yacked from trying to get all the SnotGlue out. Then I was fine for the rest of the day.

Sunday, woke up with sore throat, scratchy throat, and developed a cough over the course of the day. Had trouble sleeping last night due to sore throat and SnotGlue lodging in nose and throat.

Today, I sound like Old Lady 30-Year-Pack-a-Day Smoker and I even have the trademark same sounding cough/hack that my Ma gets every morning til she’s had her first three ciggies.

This shit had better go away quick, because I am NOT going to go into another round of Endometriosis bedridden this month AND have SnotFest again. I’ve already done that combo this month, thx.
Yeah, yer readin that correctly. I get girl do0m TWICE this month. Happy Holidays!

This post is categorised under ‘Alcoholism’ too, because I keep promising myself I’ll go completely sober and I haven’t been able to do it yet.

On Friday, I had some sake and the equivalent of a shot of plum wine. That went fine if I recall correctly. But my memory sucks.

Last night, I had a shot of vanilla vodka and immediately, my face, neck and chest rashed out, and I immediately felt tired and run down. That’s an allergic reaction. I recently googled and found out that most vodkas today are made with some kind of grain, likely wheat or some other glutenous grain. So if I want to have vodka, I’m going to have to try potato vodka instead, and go back to my Polish roots on my paternal grandfather’s side of the family.

When the one shot of vodka in a drink didn’t work out, I went for a shot of rum. But the damage was done - my face was already hot and rashed out. I ended up drinking a second shot of rum over the course of the evening - both times with some heated apple juice.

Then I was dumb again and had more vodka - this time from Hangar One because it’s so spicy-good. However, a quick trip over to their site also reveals that they too use wheat in making their vodka.

I didn’t have a hangover or anything this morning but I definitely realised immediately upon drinking booze last night that it didn’t really make me feel good.

SO.

Whenever I crave an alcoholic beverage, I will need to make sure it’s only rum, potato vodka or sake.

Most if not all wines are made with yeast. Same with champagnes. And yes this includes plum wine. I looked it up.

Most if not all scotches and bourbons and whiskeys are made with wheat, other glutenous grains, and yeasts.

I was reading my newly delivered Budwig Diet book today, and she keeps mentioning champagne and natural wine with breakfast to help speed the delivery of oils and proteins into the system. Well, I can’t have champagne anymore so I’ll check with the natural grocery in town and also some health food stores as to whether they have natural wines.

This is my last week and a half before the dreaded pain returns and I’m bedridden once again. So I’ve been making a grocery list of the Budwig Diet stuff. It would help if I hadn’t consumed mass quantities of popcorn and corn chips and chocolate and alcohol last night with friends, and it would help if I could remember to take my Chinese herbal pills more than once a day (I’m supposed to take them 3x/day).

But at least I’m cognisant of what I’m doing and what my goals should be. That’s a start, eh?

Oh, I bicycled on the trainer for five minutes today, too. Five solid minutes worked up a sweat and it’s better than nothing at all.

Songs have been stuck in my head so I have to share.

When we were at the Tool show, my man leaned over and asked me if I knew the meaning to one of the songs that Tool had just started playing. I shook my head. It’s off their latest album, which I’d not given a good hard listen to, aside from in my man’s car when we’re travelling somewhere local.

My man told me the story of Maynard’s mother, and how she’d had a stroke and became paralysed and wheelchair-bound for many years. He told me that Maynard’s Ma eventually died, and this song is about how long her suffering went on for - 10,000 days - before her liberation.

I thanked and hugged my man, and gave the song a good hard listen right there in the concert hall. I was very moved and honoured that Maynard wanted to share this part of his life with all of us. The only thing that sucked was realising that my man and I are not typical Tool fans, because we were not waving our arms and shouting TOOOOOOOOOL!!!! and WOOOOOO!!! throughout the song, or drinking copious amounts of beer, or smoking our weight in pot to enjoy the show.

I stood there and *listened*.
I know a lot of Tool fans do this, it just seems that we are in the minority - the ones who do actually LEARN and take something positive from Tool’s music and their shows.

So anyway, the songs Wings for Marie and 10,000 days have been stuck in my head since the show. Very sad, but Thank you, Maynard.

Wings For Marie
You…
You believed …
You believed in movements none could see.
You believed in me

A passionate spirit
Uncompromised
Boundless and open
A light in your eyes
Then immobilized.

Broken
Fell at the hands of those movements that I wouldn’t see
Yet it was you who prayed for me.
So what have I done
To be a son to an angel?
What have I done
To be worthy?

Daylight dims leaving cold fluorescents
Difficult to see you in this light
Please forgive this selfish question, but
What am I to say to all these ghouls tonight?
“She never told a lie,
… well might have told a lie,
But never lived one.
Didn’t have a life,
Didn’t have a life,
But surely saved one.”
See? I’m alright
Now it’s time for us to let you go.

10,000 Days
Listen to the tales and romanticize,
How we’d follow the path of the hero.
Boast about the day when the rivers overrun.
How we rise to the height of our halo.

Listen to the tales as we all rationalize
Our way into the arms of the savior,
Feigning all the trials and the tribulations;
None of us have actually been there.
Not like you.

Ignorant siblings in the congregation
Gather around spewing sympathy,
Spare me.
None of them can even hold a candle up to you.
Blinded by choice, these hypocrites won’t see.

But, enough about the collective Judas.
Who could deny you were the one who
Illuminated your little piece of the divine?

And this little light of mine, a gift you passed on to me;
I’m gonna let it shine to guide you safely on your way,
Your way home …

Oh, what are they going to do when the lights go down
Without you to guide them all to Zion?
What are they going to do when the rivers overrun
Other than tremble incessantly?

High is the way, but all eyes are upon the ground.
You were the light and the way they’ll only read about.
I only pray, Heaven knows when to lift you out.
Ten thousand days in the fire is long enough;
You’re going home.

You’re the only one who can hold your head up high,
Shake your fists at the gates saying:
“I’ve come home now!
Fetch me the spirit, the son, and the father.
Tell them their pillar of faith has ascended.
It’s time now!
My time now!
Give me my, give me my wings!”

You are the light and way that they will only read about.

Set as I am in my ways and my arrogance,
(With the) burden of proof tossed upon the believers.
You were my witness, my eyes, my evidence,
Judith Marie, unconditional one.

Daylight dims leaving cold fluorescents.
Difficult to see you in this light.
Please forgive this bold suggestion, but
Should you see your Maker’s face tonight,
Look Him in the eye, look Him in the eye, and tell Him:
“I never lived a lie, never took a life, but surely saved one.
Hallelujah, it’s time for you to bring me home.”

I’ve been forgetting a lot of things again lately, even before the news of my uncles came in. I just haven’t had the time to journal about it.

On Tuesday, I totally forgot I was going to see Tool in concert, even though I talked about it with my man that morning. He came home from work and I was washing dishes in the kitchen, hanging out in my “fat pants”, and wondering what to do for dinner. My man gave me that wary look, the one that says, “Don’t…don’t you remember?” And I had to ask what was wrong. He told me we needed to get on the road for the concert.

AIIIEEEEE!
I said, and ran around assembling myself quickly.

COME ON PEOPLE, IT’S TOOL, WHO COULD FORGET THEY WERE GOING TO A TOOL SHOW THAT NIGHT?
We got to the show on time, no worries. But STILL. I keep wondering fearing how much worse this memory loss will get.

When I got the oil painting replica sent to me the other day, I meant to call my Uncle C and thank him - but I couldn’t call til 4pm Pacific cuz he doesn’t get home til after 6pm Eastern Time. I even left myself a note. But I forgot to call.
Though I left a note again yesterday and did remember to call. When I did call, I had a pleasant hour and a half conversation with my Uncle C. The problem with the conversation is that I spent most of it saying, “Uhhh, what’s that word…uh….” to get through nearly every topic we talked about. Simple, every day words. They can’t be found in my brain. It’s like hide and seek. I’d finally remember before Uncle C could tell me but it was still frustrating and embarrassing.

I meant to journal about other things I’ve forgotten about, but well… I forgot what they were already.

…and someone just called me and wanted to know why I’d called them yesterday afternoon. Uhh..I have NO idea. I asked for the name of the business. She told me and I had to sit there, thinking frantically WHY I would have called.
Then it finally hit me and I was able to carry on the conversation.

Friends continue to tell me in so many words to stop being a drama queen about this, and that they forget stuff all the time, too. But I honestly think this is NOT the type of forgetting that goes on with them.

Do you always feel like a dumbass because of the myriad things you forget? Do you just brush it off because “everyone forgets”? Is the forgetting I write about here, also the types of stuff you forget?

I just don’t think this is right. I maintain my theory that this is brain injury from the car accident.

11:41am Edit: It just happened again. I put on my clothes after a shower. I put things into my pockets. Then I couldnt’ find my phone. I patted the outside of my pockets… nope, no phone. Searched the house. Picked up the land line, called my cell, and…..

My pants rang.

Bowing out that windshield in 1994 - it’s with me for all time.

And that reminds me that last night, we were driving somewhere and a fire ambulance whirred past. My man drove us down a street to our friend’s house and there was a dumpster on the side of the road. He went towards it, being funny.

Well, it would have been silly except for my brain decided to go into flashback mode and I steeled against the seat and held my breath and memories played back vividly - the grill of the SUV, the gasp - waking up in the fire ambulance.

As soon as the flashback occurred, it was gone, but it left me nauseated, and I told my man never to do that again.

Bowing out that windshield in 1994 - it’s with me for all time.

For those of you who don’t know, I’m a huge fan of genealogy. This is due in large part to the fact that my Appalachian family has such a rich oral tradition, and by my early teen years, I wanted to start writing all this stuff down. My Ma had a lot of my Dad’s family photos and paintings for a time, and in the boxes of photos and such, there was an oil painting. It may be the most treasured thing next to the family bible on Dad’s side of the family. Now, Dad’s side of the family doesn’t have a lick of Appalachian blood in ‘em. Dad’s mom’s family (my paternal gramma’s side) is Scottish and Canadian. Dad’s dad’s family (my paternal grampa’s side) is 100% Polish.

Well, in time, my Uncle C became keeper of Dad’s and his side of the family’s historical artifacts, and collected it back from my Ma.
Uncle C just got the painting hermetically sealed so no further weathering can come to it, and in the process, he had 8×10 photo replicas of the oil painting made.

I just got mine today! I present to you, ladies and gentlemen,

George Bannerman Milne, chief engineer of many steamer boats up and down the St. Lawrence waterway, father of eleven children, brother to three other sea captains, father to yet another, and son to THEE man who started this family of sea captains, Alexander Milne, who emigrated from Aberdeen, Scotland.

You can read all about George’s family here and view photos of the family here.

*phone rings*

Me: Hello?

Ma: Zept?

Me: Hi!

Ma: Are you driving?

Me: *hesitant* … No… what’s going on?

Ma: Oh nothing… are you at home?

Me: Yes…Ma WHAT’S WRONG?

Ma: Oh! Uh… I just wanted to update you on your Uncle Bob…

But before we get to that, I realise I never journaled about her phone call to me last week. She called me on Friday or Saturday to tell me that Uncle Bob was in the hospital, but that he was fine. She told me he’d had severe pain in his stomach, so they did a cat scan. They found “a tumour size of a man’s thumb” and did a biopsy and we were waiting to hear back on the results. But Ma told me not to worry, that everything is fine, he’s doing fine.

He’s not fine.

Ma called today to tell me that Uncle Bob has stage IV (metastatic) cancer in the stomach lining, and that he was told he has between 6 weeks and 20 years to live, depending on his attitude. His doctor emphasised that attitude is VERY important, that miracles DO happen, and that he CAN beat this.

Ma told me that they’ve done a port and are putting chemo in there, and we’ll see how it all goes.

Meanwhile, his wife, my Aunt B (Ma’s sister) had been diagnosed with emphysema in the past four years, and despite that, she went back to smoking, just like their brother, my other Uncle B did. Sorry for all the B’s… all their names really do start with B.
He’s got emphysema and is on an oxygen tank, and still smokes, and laughs at us when we chide him.

Anyway, Aunt B told Ma that she’s already had her breakdown and is now strong and positive and keeping it together for Uncle Bob and the family. I’ve emailed her and her kids - my four boy cousins - to tell them I’m thinkin of ‘em all. I don’t have a phone number for any of ‘em anymore - I called my Ma back, and left a message asking for numbers.

To go into family history with Uncle Bob - he’s always had a great sense of humour. He’s always been a teaser, a clown. All his four sons have never called him ‘Dad’ - they call him ‘Bob’.
Their family never divorced like mine did - Aunt B and Uncle Bob and the four kids all lived and stayed together.

I have such fond memories of the holiday gatherings our huge Southern family used to have. It’s what keeps me tied to these people even now, despite the fact that so many of us have moved away from the Detroit metro area and even out of state.

Now, to add insult to injury, while on the same phone call, Ma told me that she also found out that Uncle M has kidney stones, and while getting a cat scan to diagnose him, the doctors also found a nodule on his lung.
Uncle M he refuses to talk about it even with his own wife. - She’s told the family what she knows and that’s about it. This is the same Uncle M whose son died in 2004.

I just… I can’t take much more of this and yet I’m angry and want to do all I can. I’m sending the Budwig books to both my uncles. I dunno what else to do. I feel helpless to what’s going on around me.

Uncle B, Aunt B and their kids - Family Christmas, 1986

Part of our family at the Family Christmas in 1986

Uncle B, Cousin J, and my bro - Family Christmas, 1997

Aunt J, Aunt B and Uncle M at gramma’s funeral in Kentucky, May 2003

Lots of Tool. Listening to Lots of Tool today.

Just got home a bit ago - I saw Tool in concert.

HOLY CHRIST what an amazing show!

Though it’s a learning process to /ignore the fuckton of stoner/drunken assholes at a Tool show.

AND JELLO GOT ON STAGE AND THEY DID HOLIDAY IN CAMBODIA!!!@!$#%$%^%$

And the drummer from Primus got on stage too and joined in a drum thingy, heh…

And I’m diggin Maynard’s hairstyle, too.

I didn’t have a camera, but I found some guy’s pix on flickr from the tour in June this year in Florida - he took some really good pix that sum up what I saw tonight.

And… I just have to say that Tool is great psychotherapy.

We barely remember who or what came before this precious moment,
We are Choosing to be here right now. Hold on, stay inside…
This holy reality, this holy experience. Choosing to be here in…

This body. This body holding me. Be my reminder here that I am not alone in
This body, this body holding me, feeling eternal all this pain is an illusion.

Alive

This holy reality, in this holy experience. Choosing to be here in…

This body. This body holding me. Be my reminder here that I am not alone in
This body, this body holding me, feeling eternal all this pain is an illusion…

Twirling round with this familiar parable.
Spinning, weaving round each new experience.
Recognize this as a holy gift and celebrate this
chance to
be alive and breathing
a chance to be alive and breathing.

This body holding me reminds me of my own mortality.
Embrace this moment. Remember. we are eternal.
all this pain is an illusion.
                                  - Parabola, by Tool

After my daylong drama fest through my journal was relayed yesterday, my surgeon called me back finally. She said, “I got a message here about your fibroids??? You don’t have fibroids.”
I clucked my tongue and told her, “YES, I KNOW. Your staff is hellbent on misrepresenting and berating me.”

I then told her about my day last Tuesday, how I’d sunk to the floor twice in screaming pain and was panicked that I’d hemhorrage to death, not knowing what was going on inside. Her reaction?

“How long were you unconscious for?”

…

I WAS NEVER UNCONSCIOUS was my reply.

I tried again with this woman…. Let’s rehash that fucking story ONE MORE TIME here, shall we?

I told her how the pain set in and I’d taken a darvocet, and the pain ramped up so fast that I was crying. Within a half an hour, I took ANOTHER darvocet when the first one did not kick in. I told her Tylenol 3 always kicks in faster. At this point the pain was so bad that I felt like my uterus and all organs in that vicinity were in the process of trying to detach and fall out of me. I told her how heavy the bleeding was. I told her that due to all of this nightmarish pain, I sank to the ground in the bathroom and couldn’t get back up.
Sobbing, I used my left leg to balance and that proved WRONG MOVE, because most of the pain was on the left ovary through the uterus, through the cervix, back to the anus, and forward into the vagina.
I staggered to the bedroom and collapsed again and stayed there to ride the pain out with a heating pad that I’d been clutching the entire time I was sobbing from the pain. I tried not to puke from the pain.

I told her that BECAUSE the pain was SO bad, and it’s not been THIS bad for years, WTF is going on. I asked for an ultrasound to see if I have fibroids.

She said, “You don’t have fibroids. I’m looking at your surgery report (from ten months ago) and there were no fibroids there, nor at your post-op checkup in August. You have really bad Endometriosis. The disease was all over the back of your uterus and on your bladder. Unfortunately, that’s what it is - maybe it’s getting worse again. This is JUST your disease doing its thing. I really wish I could help. I feel so badly for you.”

I asked if since surgery or since August fibroids could have manifested - she said unlikely.

So after we hung up, I did some research and found that fibroids LOVE the birth control pill and thrive and grow like weeds under its influence. I was only on The Pill (Yasmin) post-op for a couple of months, though. Could that have started something, I wonder?

I don’t know, that’s where my surgeon/GYN is supposed to come in, but apparently she’s done with me after surgery based upon her continual brushing off of all my comments, questions and fears since surgery.

*sigh*

For the past 48 hours, I have felt like I do just before george arrives. I have the mild uterine cramping and bloated feeling. Only, he just left on Wednesday, December 5th, after nearly killing me the day before. My period this month was all of THREE AND A QUARTER DAYS long, when usually it’s five.

Today I had a job interview. When I got home, I took out the recyclables and put the empty cans back in their places in the kitchen. I went towards the kitchen sink to wash my hands, pain suddenly seized my entire uterine area down and over through my anus. I grabbed the countertop with my right hand and turned and bent forward, gritting my teeth for roughly 12 seconds til the pain passed.

And my surgeon/GYN tells me this is JUST part of having Endometriosis. My goddamned menstrual cycle is over this month and you’re telling me this is NORMAL for Endo, when the Endo IN ME never acted this way before?

Thankfully the place that I interviewed at wants me to have a current physical exam (because the job is to be a teacher of children). I’m due for a physical through my local physician. I am using this opportunity to get said physical AND a referral to a new GYN - I went straight to the doctor’s office right from the job interview to schedule the appointment.
Then I can get the fucking ultrasound I’m asking for, thankyouverymuch.

The medical establishment in the U.S. is a load of crap.

At least I’m not depressed as all hell today. I’m angry but eh, I guess that’s a better start. To quote Johnny Rotten, “Anger is an energy”, and I’m motivated. Off I go to continue my day.

I’m a bit overwhelmed lately.

When I try to go back through my journal and my mind to piece things together to make a coherent journal entry, I end up feeling sick and wanting to cry, because it feels like there’s too much wreckage scattered over too wide a range to sift through.
This in turn brings on a feeling of panic.

So then I start thinking, I don’t NEED to go back through any of my journal or my mind to piece stuff together, do I?

I could live in abject ignorance and therefore bliss, couldn’t I?

The reality is actually no, I can’t.

See, the next time the pain comes around, I’ll start wondering what I did to deserve it this time. I’ll start eliminating this or that food or beverage and things won’t improve like they never do, and I’ll be there feeling sorry for myself.

The reality is that I do know a lot about my condition, and I do have an obligation to share that information with others who also suffer from the same disease I do.

Okay, okay, this brings on another side conversation:

Whether those people choose to use the information I share with them is up to them.

So why is it my obligation when people might not listen to me?

Well… some does not equal all.

Right.

So I have this obligation to share the information that I find about my condition - namely, Endometriosis.
I’ve been creating a webpage on this site for nearly ten months now, which will be a resource for people suffering from Endometriosis, and I’m frustrated because I’m bogged down in the design and functionality of the site, when really I just want the information out there. This is the same thing that bogs me down in my astrology business - the design of the site vs. providing the service.

I’m not a webmaster. I just need to get my stuff out there.

I have the same problem with writing books. I don’t know how to publish the goddamned things, I only write them.

Clearly I need minions assistants.
I feel like this is what is holding my life back.

Ok, now to the point of this post; The C word, and the proverbial digging up of pieces of wreckage over the large geographical range. Let’s do this.

The C word started for me as a personal attack back in June 1st of this year. I was at a friend’s birthday party and someone I’d met at the previous year’s birthday party - someone I found out last year who also has Endometriosis - began telling me that the latest news on Endometriosis is that it’s a CANCER.
She told me that to get people to finally give her the respect she deserves with this disease, she’s been telling them all that she HAS cancer, and people suddenly are now sympathetic and understanding, whereas before that, she was treated like a hypochondriac.
I remember panic piercing my heart, and at the same time thinking she was full of shit with her cancer story. I told the woman that I’d have to research this myself, and that I wasn’t ready to hear that a disease that I have is actually cancer.

So I did some reading up. Turns out, the Experts had in fact been debating for some time as to whether or not Endometriosis is a cancer, and many have been calling it cancer-like because of its cellular behaviour.
It was then that I found out that women who have Endometriosis have a higher incidence of breast, endocrine and brain cancer according to the studies done over time.¹, ², ³

Further research today shows that survivability of the above cancers is dependent upon the stage at which it is found.
Here’s a nifty chart noting Breast Cancer survivability.

Endocrine cancer is quite a bit more difficult to research at the moment, since so many organs are involved. This is where fear really comes into play for me - I had Pancreatitis when I was 21 years old. Once the pancreas is inflamed, you always have a higher probability of a) getting pancreatitis again and/or b) getting pancreatic cancer.
So I guess for my own health history, let’s go with pancreatic cancer. Once again, fear is here. There’s only a 15 - 20% survivability rate if I’m reading the information correctly. It looks even more dismal on this site.

A preliminary search on brain cancer survivability doesn’t appear to turn up much info to go on, but this article from 1999 doesn’t help when it says doctors had recently doubled the survivability of patients with glioblastomas (a primary tumour) to 98 weeks. Uh, that’s a brain cancer survivability rate of a year and a half. Great.

Anyway, I had said when I found out that Endometriosis is cancer-like that I just have to keep my spirits high, but in truth this has been very hard for me to bear emotionally. I thought that I would have some pain relief from the surgery that I had back in February of this year. My surgeon said she was convinced I’d be pain free for a time. Even if the pain went away for months, I thought it would be a great thing. I believed my surgeon would help me. I simply opted to live in denial of the facts, because at that time, I had NOT been reading the stories of other women who go through what I go through. I just didn’t want to be bothered with other peoples’ pity parties. MY doctor said I’d be okay.

It wasn’t until my first week after surgery, when I’d had complications, that I sought out stories of other women who have Endometriosis. I was beginning to distrust my surgeon. I wanted to know from the horses’ mouths. So I sought out the stories of women who’d had surgery and what happened to them post-op.

That’s when I really started grasping the fact that my disease won’t ever go away.

Two weeks after surgery, I had my first period, and thought I would die, the pain was so bad. This was because on top of having the menses activate the Endometriosis I did not know was still inside me at the time, I was also still healing and my body creating scar tissue from the surgery just two weeks prior. So it was all very bad. I had started taking Yasmin on that first period after surgery. Yasmin is a birth control pill, so it has synthetic estrogen and progesterone in it. The medical establishment says it’s one of the lowest dose pills out there.

What they failed to tell me and countless other women is that the disease we have THRIVES on ANY type of estrogen.

Yet I felt like I *knew* that already. But yet I took the poison hormone pill because my doctor insisted that it would make me all better.

Within two months of starting the Yasmin, I was sobbing in the doctor’s office of critical suicidal ideation, with my man trying to convince the doctor not to lock me up in a mental institution, just get me off the goddamned hormones safely.

I’d only gotten to have ONE month free of the pain that leaves me bedridden, but at the expense of constant mild breakthrough bleeding, and more to the point, at the expense of my SANITY and well-being, while on the Yasmin.
As soon as I went off the Yasmin, all the heavy bleeding and massive pain returned.

Months later, on September 15, 2007, I’d discovered in an Endometriosis book what Deep Endometriosis is as compared to … I dunno… “regular” Endometriosis. I wrote to my surgeon to inquire why I was still in pain. I think I forgot to update my journal with her phone reply, and sadly I cannot do a transcript of the phone message because I accidentally deleted it. Anyway, she’d told me that the Endometriosis was not 1cm DEEP, it was 1cm LONG on the uterus, and she removed all that she could find. However, she said, there is still Endometriosis on the bladder itself, and that she could NOT remove it, lest she chance puncturing my bladder and therefore damaging me for life, as I’d have to wear a catheter for the rest of my life.

This was the first time in SEVEN MONTHS that I’d heard that I still had Endometriosis in my body. She’d told me at the time of surgery and at the followup that she’d in fact gotten it all out. Why the fuck would she lie to me?

In shock, at the time I received her voicemail, I had called my surgeon back and thanked her for not puncturing my bladder. It was then that she urged me to try a new drug. She wanted to put me on Lupron. She wanted to remove ALL estrogen from my body, and finally admitted to me that it is the thing what feeds my disease. She said I’d have to live with perpetual menopause though - and didn’t see a problem with that, because it’d be BETTER than what I go through, now. I told her that I don’t see how hot flashes, night sweats, insomnia, decreased libido and dry cooze, as well as cancer risk is BETTER than what I go through now, cuz the above side effects to Lupron are DAILY, whereas my disease only takes me out MONTHLY.

Going back in time a bit now - from June to August of this year, a friend was sharing more stories and a website about her sister-in-law, who had terminal cancer. I’d been reading the website on and off for over a year, thanks to my friend, and I was trying to develop courage like this woman had. This woman - Lori - had Stage IV adenocarcinoma (cancer of an unknown primary); i.e. the doctors don’t know what caused her disease.
Sounds familiar? Doctors don’t know what caused my disease, either.

First was Lori’s story, then there was the acquaintance who told me that Endometriosis is a cancer. Then my own research confirmed that Endo is in fact so cancer-like, that when the medical Experts were trying to guage this disease, they chose to use the cancer staging system for Endometriosis.4

Then on September 21, 2007, I learned that another acquaintance had thyroid cancer (which is an endocrine cancer btw), so I read back through her journal to catch up and LEARN what thyroid cancer is all about. When discussing her condition with two other acquaintances in September, they both replied something like, “Oh yeah I had that, too! No big deal, they just cut it out and give you radiation for it…”

Meanwhile, I’m sitting there going OMG HOW DID YOU GET THROUGH THAT AT THE TIME…

Then last night I read that an acquaintance’s mother has Stage IV terminal cancer, after having been in remission for many years.
After reading that story, I felt ready to crack. I’d had enough with the C word already. I’m tired of this piece of shit disease and I’m tired of the Experts saying my disease is associated with it. I’m tired of being guilty by association so to speak. I’m tired of having to constantly research whether or not the Experts have determined that Endometriosis IS a cancer or only cancer-LIKE, but in the meantime, nope, sorry, still no idea how it’s caused or how it’s cured.

I just want them to find a fucking cure already for cancers and cancer-likes.

Then this morning, another acquaintance posted this website about lymphoma - it was the first I knew that he’d ever battled it. I listened to his and another woman’s story on that site, and listened to the music and looked at the art - which was all created while going through their cancers.

That’s when I finally cracked.

I am afraid. I’m afraid for what my future holds. I’m afraid to go through upwards of another twenty years or more with this disease without a cure (after reading countless women’s stories, Endometriosis isn’t even guaranteed to go away with menopause). I’m afraid that doing all these holistic treatments in search of relief will prove to have either a) been in vain or b) not stalled or stopped getting one of the cancers described above (see numbered citations above).
I’m afraid that all these people entering my life with their cancer stories is meant for a reason - a message - to try to let me know that the Endometriosis will either turn out to be cancerous or will have already allowed my body to develop one of the cancers listed above, and that it’s important to learn their strength as early on as possible.

But right now, all it’s doing is causing fear.

I don’t like living in fear. This has GOT to stop. I have got to get ahold of myself. I have spent EIGHT HOURS journaling all of this today, with several crying spells during the course of my writing.

I know too that I just came off my period, and I’m still detoxing from all the pain medication. That tends to make me very emotionally volatile.

*sigh*

At least now I can start my day. There was no starting until I expunged my head here.
I feel a bit better, now.