I Will Not Suffer In Silence

Back on January 21, I saw Dr. Streitfeld, who referred me to Dr. David Adamson, who is a reproductive endocrinologist.
I’ve been leaving messages for his office and for a regular endocrinologist named Dr. Grace Eng, who I tried to see in 2009 but for some reason never got to.

Anyway, today I finally got a live person on the phone at Dr. Adamson’s office, and within seconds my heart was broken, my hopes dashed.

“I’m so sorry, but Dr. Adamson is no longer seeing patients with endometriosis - he only sees patients with endometriosis who are trying to have children.”

I was shocked. I thought some sort of cruel joke was being played on me. I could hardly believe what I’d heard was real. I thought, he’s no longer giving endometriosis patients the time of day UNLESS they want babies?!?!?! What the hell kind of slap in the face is that?!

I kept my voice even and as sweet as the secretary’s voice. I asked if there are any other doctors that Dr. Adamson is referring endo patients to.
I was told he refers patients to Dr. Andrew Cook.
Well thankfully, Dr. Cook is on my short list, so I called his office, next.

I was all set to schedule a new patient visit, when the secretary gave me the lowdown:

They don’t DO insurance - they want prompt payment from my bank account or credit card. But they are happy to submit a claim to Aetna insurance company on my behalf for the rest of the money to maybe be returned to me. From their website, “We believe in health maintenance rather than just control of disease. This type of care is not accommodated in the billing contracts of insurance companies that require a rushed schedule. For this reason, Vital Health does not contract with insurance companies. Vital Health Institute specializes in excellence!”
The first visit is a $200 consultation fee, and if my insurance deductible has not been met, then it will be an additional $395 for the office visit. That’s a total of $595 out of pocket for a single office visit. Then there’s the idea of surgery with this guy, also out of pocket. My first laparoscopy was $19,000 and was covered in large part by Blue Shield, our old insurance plan. My out of pocket cost on that was $1,500.

I told the secretary I’d have to talk it over with my husband and give her a call back.

When I got home, I also remembered that Dr. Streitfeld had said he thinks I could have adenomyosis, which could be detected on a MRI or a PET scan. If I want to skirt around seeing Dr. Cook in the short term, perhaps my current GYN can just send me for a MRI or a PET scan…so I logged into Aetna’s website and looked up the pricing. I did not see PET scans being offered, but MRI is. For in-network, a MRI will cost $1,772. Of that, I am unsure how much my co-pay will be. I had a echocardiogram in 2009, which cost over $4,000. There were two or three insurance adjustments made, and I ended up paying around $470, which is still a lot of money, and took me a year to pay off, because I only make $11/hr and my husband doesn’t like shelling out his own money, even after he assures me he will (but that’s a whole other can of worms).

I sulked.

Here I am, trying to do the best thing for my health; I am trying out alternative therapies, which are costly and out of pocket. I am trying to find a new gynecological surgeon so I can get surgery number two after the first one three years ago never gave me any pain relief, and now I find out that the type of surgery I am interested in (excision vs. cauterisation) is also going to be an out of pocket experience.

On top of that, I have been at my recent job for 10 months with only partial training for the job. This keeps me at assistant status, which keeps my pay low. I need to shell out $1,700 for classes THIS SUMMER, which will bump me up to head teacher, which will increase my salary.

The dilemma is this: stay on the job and take the courses, but continue to miss work each month due to the pain, OR start seeing Dr. Cook, save every penny I can, and get surgery number two, which will require me to take weeks off work to recover from the surgery. When I get back to work, I’ll be playing financial catchup for a year or more.

I even mentioned my financial frustration to my husband in chat when I got home from work.

Me: i’m beginning to feel the reality - i can EITHER start on a new path with a new surgeon and get that second surgery in hopes of long term pain relief, OR i can go to montessori teacher training.
Husband: at least for now?
Me: right
Me: this year
Me: those are my choices
Husband: well, there is the lottery…:/

This exchange left me feeling not only frustrated, but mad.

Before you even think to ask me about credit cards, yes, I have two, and they are already maxed out since our honeymoon in May, 2009, and my having to live off of them since that time because my husband doesn’t like to spend his money to support me. Even though he says he’s fine with it, the money is not there whenever I need it. I had an acupuncture appointment last week, and forgot about it til the last minute. I asked my husband for financial assistance ($50) the night before the appointment, and he got real upset with me. He grudgingly wrote out the check.
On Friday, I asked my husband if it would be possible for him to withdraw up to $100 in cash on Saturday so we could look at what the dispensaries had to offer me in the way of alternative medication. He said yes, and seemed to not have a problem with this. He patted himself on the shoulder that day for supporting Prop 215 “by putting my money where my mouth is”. We got inside the dispensary and I priced out a few items. I wanted to try the butter, the mocha mix and a tincture. The cost would come to just under $60.

My husband told me I could EITHER get the butter OR the tincture. His face went grey with how expensive each was (about $22 and $36 respectively).

So for a man “putting his money where his mouth is”, he withdrew $100 for me to get what I wanted to treat my pain, and then only permitted me to use $28 of it.

This is a man who makes $65,000 MORE than me each year, and he’s suggesting I try the lottery to cover basic needs of raising my income via schooling, and surgery to alleviate or minimise chronic pain.

We have a joint bank account. It has been empty since the honeymoon.

We’ve had several talks - or rather the same talk over and over. Nothing is changing.

He pays all of the rent on our apartment, and he often helps pay for my expensive groceries (see my list of allergies and whatnot). He has taken over the long distance phone bill and the land line bill.

I pay for my cell phone, my auto insurance, some groceries, my two credit card balances, the DSL connection, our renter’s insurance and earthquake insurance. That alone takes up most of my paycheck every two weeks.

My husband is on his way to band practice right now, and I will be asleep when he gets home, so I emailed him, requesting that we have yet another financial talk. If I could only get official confirmation that he will not support me financially, instead of this wishy washy bullshit, then I can formulate a plan to care for myself.

If I am on my own financially, I think it’s best that I just go back to pretending that this is what all women go through every month, and stop trying to treat something which ultimately probably can’t be treated, anyway. I won’t die from my condition. No matter what I’ve tried in the last 23 years, nothing has worked anyway, so why bother to continue trying to fight it. I don’t have anyone but myself to help me financially and emotionally, anyway. Same as it ever was.

I got about 7 hours of sleep before having to wake for the day because the pain forced me out of bed.

I stood groggily in the bathroom, staring in the mirror, trying to figure out if I should take Tylenol 3 with Advil, or eat some more medicated butter with Advil. The pain rose to a 7 on the pain scale.

I remembered eating just a few slivers of the medicated butter on a gluten-free waffle last night. The effects took 20 minutes or longer to kick in, and then I was pain-free for about an hour to an hour and a half. Then the pain returned, but was not an alarming pain. I went to bed with heating pads. Within half an hour, I was awake again and severely stoned. What?!? How did that happen? I was dizzy and slightly nauseous due to being so stoned. Was it the fact that I’d been on half a Tylenol 3 before eating the medicated butter - did it prolong the high? It just seemed like a new wave of stoned was washing over me - after I had gone to bed. Kinda scary.
When my husband crawled into bed around 3am, I woke suddenly and was dizzy and discombobulated. I cried out. I had no idea what was happening. I was on the verge of hallucinating.
My sleep remained broken and full of strange dreams all night.

This is why I stood in the bathroom this morning, contemplating which drug to medicate with. I know the Tylenol 3 like the back of my hand. The medicated butter is new and scary for me, especially since the dosing is completely up to me to figure out, and is not so cut and dry as pill splitting.

TMI FOLLOWS:

When the pain got to a 7 this morning, I also got the urge to defecate. Usually this is bad news - whenever there is pressure on the bowels or the bladder, the endometriosis pain becomes excruciating. While having a movement, I sometimes yell or cry out in pain, and sometimes I get quite nauseated from the pain, but once I’ve had the movement, the pain subsides, leaving me exhausted physically and emotionally. It does not matter if I have a soft stool, or diarrhea - if the bowels are agitated, it can get real bad for me, pain-wise. Of course, if I’m constipated, forget it, I’ll be on the verge of passing out from the pain.
Thankfully this morning the pain did not reach nauseating levels, and I was not constipated. Thankfully the pain abated immediately after the movement, and I’ve been about a 3 on the pain scale for the past hour.

That means I have delayed taking any medication, but the question still faces me - Tylenol 3 or medicated butter?

Today is Sunday. It is only my second day of full on menses and pain. I estimate I’ll be missing work tomorrow, based on years of experience as to how long my cycle lasts and how many days of bleeding and pain go with it.
That means I should not feel guilty over whatever medication I choose to take today, and if it leaves me too groggy to go to work in the morning, it’s okay, because I am taking care of myself today and in the here and now while the pain is present.
I spent too many years pushing myself to go to work despite still being in a lot of pain, or being exceedingly groggy from the pain and the medication to treat it. When my body tells me it is ready to return, and that could be tomorrow, then I will return. If it is not ready to return, then I will take the day off. No more of dad’s words in my head, telling me to “crawl in to work if you have to“. No more bullshit in my head from the Celestine Prophesy/The Secret/What The Bleep? cultists out there who say that I’ve manifested my own illness by way of pessimistic thinking or as they call it “Law of Attraction” (I’ve ranted about this in the past).

I’m tired.

I’m tired because of my broken sleep last night. I’m tired of proving myself to the entire world that I really am doing the best I can to treat the illness as it exists in my own meatsack. I’m tired of going through the pain every month, and the side effects of various treatments and medications. I’m tired of losing sunny days to the pain (this is Day 2 of not being able to go out into the warm sunshine and bicycle or go for a walk or run around town with my husband in a care-free manner, enjoying the weekend).

I’m currently at a 3 on the pain scale, with intermittent ass-shooting pain, which takes me up to a 7 on the pain scale. Need more breakfast food. Will report back later.

For the last three days, I have been experiencing right side ovarian stabbing pains. It’s intermittent, but enough to take my breath from me.

Yesterday I began taking Ibuprofen gelcaps. This has in the past been known as “premedicating” before the menstrual cycle, in some sort of bid to soften the pain. I am here to tell you it does not work. The premedicating is simply medicating the premenstrual pain, nothing more. One of the myths doctors will tell women with endometriosis is that if they premedicate, the Ibuprofen remains in the system and helps mitigate the pain. What a load of crap. It’s another lie doctors tell because they only want us to be on Ibuprofen - they don’t want to prescribe narcotics or opiates. They don’t want to believe the severe pain we are in.

I have a more protracted rant about doctors and ibuprofen, and I need to port over more diary entries from the old website to this one, but as usual, there’s not enough time in the day. I need to be fed and dressed for work and be out the door in 30 minutes.

Last night around 9pm, my vaginal mucosa turned a pale brown/pink colour. I expected george to be here by today but he’s not. So I Wait For It. He’s officially due tomorrow.

Gotta get to work.

WARNING: THIS ENTRY MAY TRIGGER SOME PEOPLE, PLEASE PROCEED WITH CAUTION

I’ve had a combination of not enough time in the day to finish writing about my doctor experience last week, and ongoing emotional trauma over the whole visit. That’s why it has taken so long to continue all that I want to say. I still may not say all I want to say by the end of this post, but I will give it a try…

One of the things the gynecological oncologist told me about my pelvic exam is that I have what’s known as an everted cervix. She said this is nothing to worry about, she sees it all the time. But when I got home and looked it up, the Internet scared me because I kept reading that an everted cervix could be a precursor to cervical cancer. I read that maternal usage of DES could lead one to be born with an everted cervix, other reproductive abnormalities, and autoimmune disease. I read that an everted cervix is considered a lesion and that the best treatment for this is to cauterise the cervix!

WTF!!!

I am so sick of doctors torturing my private parts! I had a flashback to the gynecological surgeon back in 2001 who emphatically told me I did not have endometriosis, so she wouldn’t give me surgery, but she insisted on a cervical biopsy without any anesthetic or pain meds. I went home nauseated and shaking from the pain and trauma of that visit and have hated her ever since. I filed a formal complaint against her in 2007 after her colleague operated on me and found stage III endometriosis with my left ovary stuck to the back of my uterus and my right ovary stuck to my pelvic sidewall, and more endo found between the bladder and the pelvic sidewall.
An inquiry followed, with the panel finding the previous gyn not at fault - no wrongdoing - no censure, nothing.

GAH, I hate people.

ANYWAY, after the Internet made me panic about having an everted cervix, I called up my two most recent gynecologists and requested they tell me if they’d noticed whether I have an everted cervix. The one who mattered most called back. I say she mattered most because she saw my cervix before surgery in 2007. The eversion was present even before surgery. How far back does this go, I wonder?
Anyway, she left a message saying she has no idea what this new gyn is telling me, but I don’t have an everted cervix. I have what’s known as an ectropion cervix, and that too is nothing to be concerned about.

After listening to her message, I looked it up; ectropion cervix is the SAME THING as everted cervix.

These doctors, I tell ya I wanna strangle ‘em.

I read up a bit more on ectropion/everted cervix and found that it’s considered to be a non-malignant disorder:

“Nonmalignant disorders of the cervix (the narrow opening at the mouth of the uterus) include cervicitis, cervical eversion, cervical polyps, and cervical dysplasia. Cervicitis is a broad term for an inflammation or infection of the cervix. Cervical eversion, also known as ectropion (often mistakenly termed cervical erosion), is the migration of cells from the lining of the endocervical canal (endocervix) to the outer portion of the cervix (ectocervix). The cells from the endocervical canal are more delicate than the cells of the ectocervix and thus more susceptible to infection. Actual erosion or abrasion of cervical tissue is quite rare but may occur following childbirth, certain medical procedures, sexual intercourse, or the use of an intrauterine birth control device (IUD).”

Further, the website states that “Cervicitis may be caused by vaginal infections, sexually transmitted diseases, and pelvic inflammatory disease. Tears or lacerations in the cervix occurring during childbirth or abortion may lead to cervicitis. The cause of cervical eversion is not known. The condition is normal in early puberty, and some women are born with it. Pregnancy and long-term use of oral contraceptives may increase risk.”
Well, I’ve had two abortions in my lifetime, one which had complications. I’d taken RU486 and nearly passed out from the pain. I thought I would die. I went through it without pain meds because I’d barfed up the vicodin I was given. Four days later, I nearly passed out again because the placenta decided to finally pass. Perhaps this abortion is what created the cervical eversion. I really wish I knew if I was born with it, but none of my previous gyns still have my records on hand.

The other thing that scared me during my visit to the gynecological oncologist last week was that she’d asked if I’d gotten the CA125 test, yet. I looked at her funny and said, “No, no one will give me the test because of my age and the fact that I have endometriosis creates a false positive for that test.”

The gyn/onc nodded and said that yes, the test does give false positives for women with inflammation and disease such as endometriosis, but she would like to run the test, anyway. She wrote me up a prescription to go to a lab and get my blood drawn. That was just one more thing to stress me out that day. My head swirled with, “why is she insisting I get the CA125? Did she see something during the exam? Will she use the results of the test to try to convince me further that I must get a hysterectomy?” I mean, seriously, “because CA 125 can be elevated in so many non-cancerous conditions, only about 3% of women with elevated CA 125 levels have ovarian cancer.”

I’m actually terrified to have a hysterectomy. I’ll be 38 next month and had no relief from my pain from my first endo surgery in 2007. Everyone has underlying issues other than the big issue placing them into the hands of the hysterectomy surgeon, and that’s why so much can get complicated for a hysto. I just don’t trust that this doctor can effectively remove all of the endo from my body before putting me on estrogen-only HRT for the next 30 or so years.

And there’s that too - HRT until I’m in my 70’s.

I’ve started to research estrogen-only therapy for women under age 45. I want to know - did any of those women get cancer quicker?

Sites such as this do NOT help me to want to have a hysterectomy.

Big sites like HERS Foundation and HysterSisters look fishy to me - they look like they’re supported by radicals and/or big pharmaceuticals with their own agendas, while saying they’re there to help women. I’m far too pessimistic to trust that they’re really there for altruistic purposes. I can’t find stats and medical journals to back up info on the HERS Foundation for example. I need non-manipulated data, please! And HysterSisters keeps plugging hormone treatments like Vivelle-Dot and surgical stuff like da Vinci surgical system for hysterectomies. I don’t want corporate sponsorship and advertising!

And then I found this article:

Researchers continue to weigh in on estrogen monotherapy arm of WHI study
December 14th, 2004

Yet another group of researchers, this time from Germany, has commented on the termination of the estrogen-only arm of the Women’s Health Initiative.

“The study arm of the Women’s Health Initiative (WHI) with estrogen monotherapy for hysterectomized women was terminated early after an average of 6.8 years - only 1 year before the planned ending - due to increased risk of adverse effects (HR 1.39, per 10,000 women 12 additional cases). However, according to the regulations of Good Clinical Practice, the early termination was not necessary, as the fixed termination criteria such as exceeding a defined ‘absolute excessive risk’ were not met,” stated A.O. Mueck…

From there, I found an article from OB/GYN Clinical Alert, which reads:

The updated breast cancer results in the canceled estrogen-only arm of the Women’s Health Initiative (WHI) are based on 237 cases of invasive breast cancer and 55 cases of cancer in situ, diagnosed by the February 29, 2004, date of study cancellation.
…The breast cancer results in the WHI do not allow us to answer the above questions with any confidence. Exposure to estrogen-progestin either has a greater risk of breast cancer, or pre-existing tumors respond differently to various hormone regimens, accounting for differences in epidemiologic reports.

…Many of the WHI conclusions are the result of statistical manipulations.

And you can see the progression in the study’s fumblings here.

Now, what is important about the Women’s Health Initiative articles is that all the conflicting data arises out of the 2004 study, but all the quotes the gynecological oncologist uses to make her case FOR hysterectomy without negative side effects are from the 2001 WHI report. She uses the following language in her patient handouts: “We know finally, from the WHI Study, that for women age 50-59 without a uterus, needing estrogen therapy for their symptoms, there is virtually no risk [bold hers] to taking estrogen alone for many years: no increase in breast cancer, heart attack, stroke or blood clot. For women over age 60 still needing estrogen for their symptoms, some unfavorable risks appear: the rate of stroke increases from 0.33% to 0.44%, an increase of .12%. Also, the risk of blood clots in the legs increased from 0.15% to 0.21%, an increase of .06%. The risk of heart attack decreases from 0.24% to 0.14%, and breast cancer risk decreases from 0.29% to 0.21%. All of these changes are teeny-weeny and frankly ignorable for the woman with significant symptoms who needs to feel like her normal self.”

Now…looking at the 2001 WHI report, they had to stop THAT trial, too, because of HRT danger to women! And I quote:

“A review of preliminary data found a 26 percent increase in breast cancer in women receiving the hormones compared with women receiving a placebo. In addition, instead of a heart benefit there was a 29 percent increase in heart attacks and a 22 percent increase in total cardiovascular disease among women receiving the hormones.
…”Dr. Jacques Rossouw, director of the NIH, noted, “the increased risk of breast cancer for each woman in the study who was taking the estrogen plus progestin therapy was actually very small.” It was less than one-tenth of 1 percent, he said, adding, “if you apply that increased risk to an entire population and over several years, the number of women affected increases dramatically and becomes an important public health concern.”

Talk about statistical manipulations!!!! The gynecologist I saw last week is clearly a lying, manipulative sack of shit.

And that’s where I’ll end Part II of my ranting over that one visit to a new doctor.

When I got home from work on Friday, an ant invasion awaited my attention. I had just wanted to take it easy but that was not to be. I spent the next four hours stooping, bending, vacuuming, spraying, ripping up the carpet and killing more ants who had come up through a crack in the foundation.
Ugh. That did me in. I was in a lot of pain in my low back, thighs, knees and calves all of Friday evening, lasting through to today - Sunday.

Today I need to get more laundry and dishes done and I’m not looking forward to it. :(

I really wish I had a helper.

My husband is not a good helper. He has band practice twice a week on Tuesday and Sunday, and sacred gaming with his buddies every Sunday night. He absolutely refuses to give these things up, even to make time for his stubborn dying father.
For example, his father’s wife called this morning to tell us they’d be stopping by to drop off baseball tickets and their house key for him, and to generally stop by to see him. She BOUGHT the baseball tickets for him and his father to spend a day together for his father’s birthday this coming week.
My husband responded by asking ME if I’d be around to collect these articles from his father because he’d be busy with band practice.
Mind you, he’s in a local band with no gigs on the horizon. But he HAS to be at band practice twice a week, no questions asked, or else he bristles.

Through the week, my husband works until 6pm, gets home by 8pm, then spends the rest of the evening working on several side projects for three different publishing companies who have contracted him.

I feel like I’m the only one dusting, vacuuming, doing dishes, washing the floors, cleaning the bathroom, kitchen, cat box and managing the continual ant invasions. In the three years we have lived here, this is the first time we’ve had such forceful ant invasions. The landlords have even sprayed around the outside of the building and have put ant gel bait inside for us. We have used cinnamon oil, Bugs-R-Done spray, and even the ultra toxic RAID in some cases, plus ant traps - all to no avail. It’s a bad year for ants.

My husband does dishes maybe twice a week. Granted, the dishes are more mine than his, cuz he eats out all the time, but it’s still overwhelming for me. He vacuums maybe twice or three times a month. He rarely remembers to change the filters on the hepa vacuum or the filter fan in the bedroom.

He has been saying for about a year now that he wants to get a dishwasher because he cannot stand doing dishes by hand all the time (and neither can I). But we have yet to see a dishwasher grace this household. He promised again this weekend, then hemmed and hawed and said that a used one he found sounded good but an hour drive each way was not worth it for him.
WTF!!! Everything is up to an hour drive each way in the Bay Area!!!

I keep telling him verbally and often that the housework is too much for me to do, that I need help, that I need a maid who we can hire off craigslist who WILL do dishes and laundry because I simply do not have enough spoons to do all this on my own.
I will have to spell it out for him that I NEED for HIM to hire us a maid, because I cannot afford it.

We’ll see how that goes.

I stayed home because of the pain and heavy bleeding today. I took a Tylenol 3 and within an hour had to go to sleep. I have no idea how I got through work yesterday because I was on Tylenol 3 then, too. Being at home I guess allows me to just go pass out with freedom.

I was on the couch at first but couldn’t get comfortable - I needed to stretch out my legs and couldn’t, and then my cat was meowing incessantly. So I got up and moved to the bedroom. It took awhile to settle - the Tylenol 3 made me VERY cranky and my anxiety was up again, too.

My first dream entailed me being at some diner somewhere, trying to order something as I sat at a small table near a partition. Suddenly, my left eye began to twitch and droop. Eventually my eye stuck itself shut and couldn’t open, and my vision was getting blurry in the other eye. I couldn’t order when the waitress came to me. I began to panic and went to the restroom. I may have been at Tillie’s diner across town….anyway, when I went to the restroom, I looked in the mirror and my eye was puffed out and stuck mostly shut. I tried to pry my eyelids open and could see my eyeball stuck in a downward position in all its viscous horror.
I then began to get tremors, not just in my eye but my whole head. It felt like a seizure coming on. I ran back into the diner and appealed to the horrified waitress. I asked her to look at me and tell me if I looked okay. The look on her face confirmed that I really wasn’t okay; I wasn’t imagining things. I began to shake, told her I might be having a seizure, and to please call 911.
As she did so, I was somehow able to get on chat or text my husband and ask him to call 911.

When the police officer arrived, I was no longer at the diner, but in a place considered to be my home (it didn’t look at all like my home in real life). I get the feeling I lived alone in this place. The police officer asked me “what seems to be the problem” and looked completely put out to have to have arrived to pick me up. I told him I needed an ambulance and needed to go to the hospital. The cop wasn’t buying my story and said I looked fine. I ran to the mirror and checked my eyes and face. Although the swelling went down a bit, I was still in bad shape. I went back to the police officer and explained to him that I was having seizures and eye twitches and my eye is still sealed shut and I can’t drive in this condition, I need an ambulance NOW!
The officer tried to tell me that maybe if I just wait it out, I’d be fine. The dream ended with me trying to convince him to allow me to go to the hospital.

I can’t remember if that dream flowed into the next or if I’d awakened for a few seconds and drifted back to sleep again.

My second dream had me encountering a kid as I walked back to my house from somewhere. I think I was in Michigan near my first childhood home. The kid was between the age of 10-12, short for his age, curly short black hair but not frizzy or too tightly curly, and darker skinned than me but not ebony. I can’t remember how we first encountered each other on this walk, but he began to follow me and beg. I think he was a homeless kid that everyone in the neighborhood knew. There’d been some teenagers hanging with him who followed us for a few seconds but seeing that I was interacting positively with the kid, let us go on alone. I remember saying something to him about when I was little, then added that he is not little anymore, not like the kids I teach at school.
But the kid got annoying and acted out. I had to pick him up and carry him as though I were carrying a preschooler in my class to the observation chair for having acted out and refusing to go of his own accord to said chair.

Once back at my house, which was very much like my first childhood home, the kid began going through my stuff. There was something that he made fly through the house, a heavy paper object or toy of some sort. We played with that for a few minutes. The house was starkly empty and there was an echo when we talked.
After a few minutes, the kid began trying to steal stuff. I chased him through my house and swatted his hands away from stuff and emptied his pockets and scolded him and told him I’d given him things already, he didn’t have to take MY stuff. This just made him act out even more, in a mad grab session, running through my house.

As I chased him, the house began to get creepy. It began to shake like an earthquake. We ran outside and there was no earthquake. The kid still had stuff belonging to me so I resumed trying to pry stuff from his hands. He wasn’t laughing - he was serious about taking it, and we struggled with each other. I began hitting him. At this point, two young teen boys (probably about 13 years old) came by to check on the younger boy and saw us struggling. They joined in, picking through comic books and games and other stuff that my husband had on some bookshelves just outside of the house, against the exterior wall of the house in the driveway and on the porch. I tried grabbing stuff back from them, too, telling them it belongs to us, it belongs to my husband, it belongs to me, etc…
The younger boy had run off - we’d come to the house from the left side of the street facing the house, and he’d taken off across the lawn to the right side of the house and ran up the street. I tried to chase after him but that’s when I noticed the two older boys, who were now ripping pages out of my husband’s comic books and graphic novels. When I tried to stop them, they explained that the pages are supposed to be ripped out and placed on a laminated mat of some sort. I told them ‘but that’s for my husband to do when he wants to because it’s his!’ but the boys continued.
Enraged, I began hitting them, too. Striking them, bashing them, anything I could do to make them stop taking our STUFF.

That’s when my haunted house began acting up again - things rattling inside, crashing about. I want to say we all went inside and experienced the rumbling shaking of the house, the swinging flickering lights and all that, but it’s fuzzy now upon recollection. Either we all went in or I went in and came back out again. There had been a 12 or 13 year old girl at this point who was also with the boys, also rifling through my STUFF, and I struggled with her, too, attacking her. She got all upset and I told her to go tell her mommy, then. She gave an evil grin and I shrugged and told her I looked forward to the exchange.

I needed to go back into the house and by this time, it was getting dark outside and the lights that were on in the house made a yellow glow. The rooms were dark. I went through the empty house, wondering where all my STUFF had gone. The house smelled like a basement. In fact, perhaps I was in the basement (The house in the dream looked nothing like my real childhood home on the inside). I was in a large room and diagonally to my left there was a doorway leading to the next room. At the far end of that room was a small bathroom, and the light was on, and water was running. I walked towards it.
Something either told me to run BECAUSE it was going to get very scary and possibly a murderer lurked in that back room - one of the kids- or something popped out at me. Either way, I booked it outta there, and began screaming because I knew something was closing in behind me, and fast.

That’s when I woke up, and my eyes felt puffy…

I got out of bed and checked myself in the mirror. Thankfully, I did not look like my first dream…

Have I mentioned how much I hate Tylenol 3’s side effects? The nightmares are caused by me likely not getting enough air, because the codeine has suppressed my respiration.

But of all the meds I’ve tried, I have the least amount of trouble with Tylenol 3.

Regarding the dreams… they do hold meaning, drug induced or not. I’ve been having a problem with my left eye spasming for about two months, now. The spams are minor but I need to talk to a doctor about it, because magnesium and potassium, which I was once told would help with that, has not. I have a doctor appointment this Saturday.

The cop not taking me seriously in the dream is directly attributable to the secretary at my GYN office who I spoke with this morning. I was explaining that I’d like to speak to or see my GYN because I’ve had abnormal periods since February, and also having endo, I’d like to just get checked out to make sure nothing bad is going on. She totally brushed me off and said cycles change as one gets older and it’s nothing to worry about. She didn’t believe I had endo and asked me accusingly, “Are you DIAGNOSED with endo??”
Uh, yeah lady, stage III, and it’s been two years since surgery, and the shit grows back, so piss off already. I wanted to say that, but instead I shot back, “Yes, Stage III, diagnosed in 2007.”
She put me on hold, came back and said, “so you’re having pain?”
I retorted, “LOOK, I *always* have pain, it’s what happens with endo. This has nothing to do with the pain. It’s the cycle switching up on me when for many years it NEVER DID THAT.”

She said she’d leave a message for the GYN to call me back. Bitch.

So yeah, the cop not taking me seriously in the dream? Same bitch.

I don’t know about the stuff being stolen or about the kids in the second dream. I never hit children, though older children like the ones in my dream, I have to say it is difficult to work with them. That’s why I only choose to work with the wee ones.

Being chased by the kids or the haunted house towards the end of the dream may refer back to my recent job harassment, or may stem from a jealousy issue I’ve been wrestling with.

DreamMoods says, “To dream that you have been robbed, denotes that you are experiencing an identity crisis or you are suffering some sort of loss in your life. Alternatively, you may feel that someone has stolen your success or has taken credit for something you did.”
Again, tied to the job harrassment because I left one career field after harassment, went back to my old career, and have been getting harassed there, and now I don’t know what to do with my life, what career options I have, how I’ll make it financially, etc.

DreamMoods also says, “To dream that you a seizure, suggests that you need to have more control in your life.”
Yeah well lots of dream topics end up translating to that.

DreamMoods says, “To dream that you are being haunted, indicates early unpleasant traumas and repressed feelings or memories. You are experiencing some fear or guilt about your past activities and thoughts.”

*sigh*

And now the cramps are back again.

Friday afternoon, I was amazed and proud at how well the pain denial thing was working, until I realised it wasn’t just pain denial or “mind over matter”. I’d also taken medication to help me along. Regardless of that, the pain could have come through the meds, it could have been so much worse like it has been in months past.
So I hope it’s really my brain along with the medication effecting the lessened pain, rather than the pain just behaving itself for the most part.

I started the mindset that there must be real actual pain denial in effect. I did this for two reasons:

1. I just started a new job and I can’t afford to be off sick again. I’ve already missed one day and one hour from this job because I caught a virus from someone there. I’ve been going to work hacking up green and yellow goo, getting dizzy, and I’ve had a constant sore throat. I shouldn’t have been going in but it’s clear they’re giving me the wary eye if I miss any more work than I already have. I feel that missing more work on account of endometriosis pain could jeopardise my continued employment.
2. An acquaintance who means well keeps telling me to “think positive” thoughts - affirmations if you will - that the pain will simply not happen. Whenever I try to tell her how the pain works, she narrows her eyes and starts to tell me I’m not thinking positive. She’s not the first person in my life to tell me that. My folks still tell me that all the time, going back to when I was a kid in high school barfing from the pain. My Qigong practitioner, my homeopathy practitioner, my masseuse, various doctors over the years - they’ve all told me the same thing. “Think positive in an effort to overcome the pain”.

I’ve also had friends, neighbors, relatives, and coworkers over the years tell me to “think positive”.

These people all have the same thing in common - they all give me a look of disapproval when I reply that thinking positive is not enough to stop the pain.

It kinda reminds me of when I was in middle school, and I came home crying after having been picked on and beat on all day. This was almost a daily occurrence for me throughout my school years. I came home crying and my mother told me a bible story about turning the other cheek, and basically ignoring the abuse these people gave me, and eventually they’d give up.
Tearfully I exclaimed, “But ma! They follow me!”
I explained to her that I’d tried repeatedly to just ignore the taunting, but the kids would lay in wait and attack me, and it was relentless, it never stopped. They never tired of it.

Seriously, you need to understand this, people. Telling me to just “think positive” and/or ignore the pain is not enough to stop the pain, just like it was not enough for me to ignore the kids who hurt me.

You may be frustrated at this point, trying to refer back to the opening sentences of this journal post. This is the thing people are not willing to understand - that the pain lessens when it wants to lessen, and worsens when it wants to worsen, despite medication, despite dietary modification, despite prayer, despite thinking positive.

What I’ve started doing in recent months is that every time someone gives me unsolicited advice on how I should manage the endometriosis pain, I take their advice and closely monitor the effects, then record it on my Things I’ve tried to combat endo page. When something doesn’t work out, I have my notes to show you. Once I have my notes, I don’t want to hear your unsolicited advice repeated.

I consider pain denial and thinking positive to be closely related, because in my world view, people who “think positive” all the time are totally in denial of reality.

The last vivid memory I have of doing the pain denial tactic was back in November, 1989. I had just started a full time job, was going to school full time, was trying to make ends meet, and then my maternal grandpa died. I was stressed to the hilt and grief-stricken on top of it. I couldn’t take any time off to go help bury grandpa down in Kentucky. I made the choice to stay behind and continue to be responsible for my own future. Besides, I’d just seen him five months prior when we went down to Kentucky to visit, when grandpa was in the hospital.

The thing is, what if all that was happening to my body really was just being overtaxed, and so the pain just couldn’t come through because of too much other emotional trauma going on?
Or what if for those particular menstrual cycles, the pain just wasn’t that bad, just because? Because sometimes I do have much less painful periods. Rarely, but it’s happened.

What I’m saying is, what if there is no mind over matter going on? What if it’s all just playing out as it would play out on its own, without major life stress going on?

Then again, it’s been proven that a lot of stress and anxiety actually brings on the cramps. And there’s no better proof of that than my time working for that company that fired me for having endometriosis. The more they harrassed me, the sicker I got, until I was missing up to four days in one week each month from the pain. So with all the stress back in November, 1989, and then again this cycle, wouldn’t I be getting bad cramps instead of not getting cramps?

I just don’t know… I mean, to contemplate not being in control of my body at all, and the pain just being willy nilly - that scares me. If I could know that I positively did have a mind over matter effect on my body, and I mentally stopped the pain from making me bedridden - If I knew that to be a FACT, then I wouldn’t be so afraid of believing in mind over matter and perfecting this skill.

What prevents me from believing that “thinking positive” actually works and is not mere coincidence is that as a devout Christian at the tender age of 14, the first thing I tried when such horrific pain hit was to think positively about the situation. I prayed to God to take the pain from me, and I thought for sure I’d be absolved, as though a case of mistaken identity for punishment had happened. “It had to be a fluke, it had to just be a bad cycle. It couldn’t be like this all the time. I’ll be fine next time.”
My ma reinforced this behaviour and for months I worked at it. I begged God to stop the pain. I had renewed hope each month that the pain would not be so bad again. Not every month in the beginning was so bad, so one month I would feel like my prayers were answered, and the next month I’d be sobbing, wondering what happened, because I was suffering again. My ma began to tell me I was being tested for my strength of belief in God. She retold me the story about Abraham and his son Isaac. I carried on valiantly, trying to prove to God that I was a true believer.

All to no avail.

In the 23 years since I’ve been menstruating, I can probably count on one hand the amount of times out of those 276 months that I’ve been pain-free during my period.

Now here’s the thing…I DO think positively about my condition. I do it in form of thankfulness.

I am thankful that I have about 17-20 good days in every month before the pain hits, because many women with endometriosis have between zero and 16 good days in a month.

I am thankful that I am only bedridden between one and four days each month, because some women with endometriosis are bedridden for a week or more each month (my maternal grandma was).

I am thankful that I know almost exactly when the pain will hit me every month, because many women with endometriosis have pain all the time, or the pain comes on without warning at any time of the month, leaving them bedridden.

So if anyone thinks I’m just a pessimist, or that I don’t think positively enough, or that I lack faith, the only thing I really have to say to that is that I’m seriously insulted by their brainless comments. The people who tell me to “think positive” and who encourage pain denial are overlooking the very real fact that I have an autoimmune disease which behaves like a cancer, because endometriosis is characterised by rogue abnormal cell growth which sets off pain receptors in the places on which it grows. People overlook the fact that I was born with this illness - I did not bring it upon myself through poor diet, poor sexual relations, drinking alcohol or anything like that.

To tell a person with a congenital painful autoimmune disease to “think positive and maybe the pain won’t bother you anymore” tells me that you are selfish and just don’t like being around anyone who suffers, because you don’t know how to deal with it.

My advice is: Don’t put your mental problems on those of us who suffer from chronic pain and incurable illnesses. Keep your selfish proclamations to yourself, because they just stress us out further and only serve to make us feel guilty or otherwise at fault for our pain.

I don’t have the energy to spend listening to people who make me feel bad for being in pain. I don’t need that in my life.
People who keep that up will find that I don’t have time for them anymore, as I’ll be taking their advice and practicing aquaintance denial as my “thinking positive” tactic.

I’ve not journaled about this until now because I wanted to make sure I got the test results back, first. And well, it was humiliating to have to go through this.

I alluded to my problem back on March 25 and March 26.

Well, on March 28 when the pain happened again during and after intimacy, I made an emergency trip to the doctor’s office.
I wasn’t due for my annual pap smear until April 20, but was told I should have it done, NOW. I want to let it be known that this is the same doctor I complained about in October, 2007 and in January, 2009. But she was the only doctor available who could see me on such short notice that day, who had access to my medical file relating to endometriosis.

During the pap smear, I was also tested for sexually transmitted diseases (STD), and was told that the test results would be due back on Thursday, April 2.

After the exam, I got dressed and waited. The doctor came back in and said to me, “How do I say this tactfully…uh…are you sure your boyfriend hasn’t been stepping out?”

First of all, he’s not my boyfriend, he’s my HUSBAND, and NO, he hasn’t been sleeping with other people. I was infuriated that this would be the first thing a doctor would suspect, given MY personal medical history, which this office has been made aware of several times.

She told me the reason why she asked the question was that the pap smear came back positive for cervicitis. I asked her if there was anything else that might cause cervicitis, because I know I don’t have a friggin STD. I cited examples of clean pap smears three times within the last ten years. The doctor shrugged and said she didn’t know of any other cause of cervicitis. What a crock of shit.

So I went home and researched it and found that a latex condom allergy could lead one to cervicitis. I thought about it some more and decided that digital play with improperly cleaned fingers and fingernails could lead me to cervicitis, as could bumping up against the anus during sexual intercourse. In my case, these are all plausible, because I am so sensitive to infections.

I called my gynecologist on Monday, March 30 to let her know I had my annual pap smear early because of an infection. We talked about everything that might lead to cervicitis. She totally agreed with me that digital play with improperly cleaned fingers and fingernails could lead me to cervicitis, as could bumping up against the anus during sexual intercourse. My gynecologist was really upset with the doctor who saw me on Saturday, saying she should have put me on antibiotics right away, to avoid the infection spreading to the fallopian tubes and ovaries and causing permanent damage. She called in doxycycline and flagyl over the phone, and I started on the antibiotics on Tuesday.

Two days later, I saw my gynecologist and she did a follow-up pelvic exam. This time I had no pain. She performed additional testing and told me the antibiotics were obviously working.

Despite knowing the above-mentioned things about my reproductive health, the STD test results from my primary care doctor were not back by Thursday, April 2.
I called on Thursday the 2nd, Friday the 3rd, Saturday the 4th, Monday the 6th, Tuesday the 7th, and Wednesday the 8th, and the goddamned results were not in. I grew angrier with my primary care doctor because she’d not checked in on me once that whole week. I would have been made to suffer an additional 12 days had I not spoken to my gynecologist.

Sometime after 8:00 at night on Thursday, April 8, the primary doctor called me to tell me that the STD tests came back negative for gonnorhea and chlamydia (DUH, AS EXPECTED), and that the pap showed no abnormal cells, no pre-cancer worries, nothing.

She stated that she doesn’t know what’s wrong with me, and to please follow up with my gynecologist.

I took the opportunity to tell her my gyn was already in the loop and was not happy with her decision to not put me on antibiotics right away. The doctor said she’d had a reason at the time for not putting me on antibiotics, but had since forgotten it.
Nice, eh?
I repeated what my gyn said - that she was afraid of permanent damage to the tubes and ovaries if the infection were allowed to proceed, and given that the lab results didn’t come back for two weeks, this is a HUGE problem for my health and safety. The doctor apologised but didn’t seem sincere in her apology.

Because I took a new job, I can no longer make my appointment with the gynecological oncologist or my endocrinologist. I had to cancel both because they are during working hours. Of course, they do not offer weekend or evening appointments, so I will be forced to take time off work. I’m going to see if I can get the appointments on Friday, may 29 - the day after I return from our honeymoon.

In the meantime, I’m glad to have proof once again that I don’t have an STD, just to shut these damned doctors up, because it’s the first thing they always leap to whenever there’s a gynecological issue, regardless of the fact that I have a documented non-STD illness in that region.

GAH THIS MAKES ME SO MAD TO HAVE TO GO THROUGH THIS EVERY TIME I HAVE ANOTHER COMPLICATION FROM THIS ILLNESS.

But on the other hand, I’m even more scared. They say they don’t know what’s wrong with me.

So what’s wrong with me then?

The fear creeps in. The big ‘c’ word looms regardless of the family doctor saying she saw no abnormal cells on the pap.

In an update to yesterday’s post:

The company that harrassed me and discriminated against me and refused to make reasonable accomodations for me, and who fired me for missing 1-3 days of work per month on account of a chronic, incurable, congenital stage III illness (Endometriosis) told me yesterday that they’d get my 1099 tax form out to me sometime in February. If I recall, the woman had told me mid-February, but don’t quote me on that. In any case, today they called me back.

They said that this year, they were told that since January 31 falls on a weekend, they have until February 2 to postmark 1099 and W2 tax forms in the mail.

I told them they’re full of shit and that if the 31st falls on a weekend, they need to get the tax forms out BEFORE then. I threatened to call my lawyer. I shit you not, I was told to update my lawyer on the current news that they have until Feb 2. However, they told me that since I’m so insistent, they’ll get my 1099 in the mail today.

I then went to H&R Block on the way home from work today and asked, “Since January 31st falls on a weekend, when technically do tax forms have to be in the mail to employees?” I was told regardless of weekend, all forms must be in the hands of employees NO LATER THAN JANUARY 31…BY LAW.

The company is in the wrong and I once again am right. They will always be in the wrong, because of what they did to me, and the fact that the federal and state authorities agreed with me, and the fact that the company settled rather than go to court. So there’s no amount of their bullshit they can dish at me that I will just take without a raging fight. I rest confidently and guilt-free in the FACT that this company is wrong, I am right, and I will be victorious.

I just wish this goddamned company would finally learn its lesson so I don’t have to get flashbacks and the whole PTSD going on every time I have to interact with them.
I can only hope that with receiving and filing the 1099 form, ALL of it is officially behind me, and I can get on with my life.

I am SO MAD!!!

I’ve been wondering where the hell my 1099 tax form is from the company that fired me in October, 2007 for having Endometriosis. I took them to the labor board and the company settled. Now I have to file a 1099 but HELLO they’ve not gotten it to me, yet.

(Note to my friends: if you know what company I’m talking about, DO NOT NAME THEM BECAUSE THIS WILL SCREW ME LEGALLY)

I tried to get ahold of them last week but couldn’t get a live person or even connect because somehow the place was operating on phone tree labyrinth.

Today I tried again and got through to the secretary (perhaps she was out last week and that’s why the phone tree labyrinth of do0m?). She patched me through to H.R., who had to check with Finance. Got a call back a bit later and was told I’ll get my 1099 sometime in February. I said, “What?!? Isn’t that a bit late?” and I was told sorry, that’s how they do it there.

So I consulted with my current employer and my husband, who all said tax forms have to be sent to employees no later than January 31st by law.

And the interwebs concur: “The returns must be filed with the IRS by the end of February immediately following the year for which the income items or other proceeds are paid. Copies of the returns must be sent to payees, however, by the end of January.”

So I called back and asked for the Finance department. I was patched through to voicemail. I left a message telling them they have until January 31st by law to send me my 1099 and to contact me ASAP. Tomorrow I’ll be calling the labor board again to see if this is still their jurisdiction or not.

And so after that, all I can say is, the PTSD returned. My back is locked up, I’m having flashbacks to how I was treated for seven months before my illegal firing, and goddammit I thought I had all their bullshit behind me!

Gah.