I Will Not Suffer In Silence

I was just entering phone numbers into my hand-me-down iPhone my husband gave me, and I got to my Qigong practitioner. I did a web search on her to make sure I had an updated phone number, and wondered if she had a new website out yet.

Boy was I disappointed when I found a meetup group she’s formed. It’s called Law Of Attraction. On her meetup group’s homepage, my Qigong practitioner lists herself as a member of “The Oakland Law of Attraction / The Secret / Abraham Hicks Group”.
Yep, it’s the same “Law Of Attraction” I’ve ranted about before. This bullshit comes from the book and film called The Secret, which came out four years ago (in 2006).

I was SO pissed off when I first saw that film. I think it was in 2008 - that’s when I began ranting about it in my journal - because in the film, there’s this “metaPHYSICIAN” who goes on about how all of people’s complaints - including medical complaints - are created by the individual against oneself (minute 15:22 and minute 23:52 in the video).

After viewing that film, an experience I had a year earlier, back in 2007 or early 2008, made a lot more sense to me.
While I was attending The Business of Metaphysics classes at the local coffee house, I met a Qigong practitioner who described what she does for a living. I was so excited based upon her job description - I wanted to see if she could help me with pain management.

However, upon talking with her after class, she was openly hostile towards anything I told her about my endometriosis pain.

She kept correcting me whenever I said ‘my illness’, for example. She dismissed me right away and told me she could not help me because I refused to see that basically I was to blame - I had manifested the idea that I am sick (a.k.a. she belongs to the “Law of Attraction” cult), and she said that in reality I am not sick at all. I proceded to start calling this woman but she never called me back. I became really angry at this person and at any person who would tell me that even before I was born, when the genes were being passed to me via my mother, that I was somehow responsible for the endometriosis that would rear its ugly head once I began to menstruate at the age of 14.

But I continued reading up on Qigong and really liked what it was about, so I became determined to find another practitioner, telling myself that the first woman I met is seriously flawed as a human.

I found another woman - the woman I saw for the next year or so. I was really happy with her services, and wished that she wouldn’t be so flaky - she offered Qigong workshops but it never lasted long. I attended what I could, but then she’d be out of reach again - after awhile, I stopped asking her when she thought her next workshop would be. I did go to her house to get Chi Nei Tsang treatments, however. It was during one treatment - it might have been my last treatment - where she gently suggested that I had created the endometriosis because of a traumatic experience I had with a boyfriend when I was 18 years old. I had told her no, that I’d been vomiting from severe pain from endometriosis for 3-4 years previous to that. She kept trying to impress upon me though, during the Chi Nei Tsang treatment, that I likely was the cause of my own illness, and that all of my negative experiences in life, all my sadness and woes since birth had eaten at my ovaries and uterus, as that is where emotions gather in a woman and create illness, she said.

Since I had enjoyed her services for several months, I basically brushed off what she was telling me. I was in denial. After all, she wasn’t being rude or hostile at me like that other Qigong woman. But after the session and from then on, it did stick in my craw a bit that she’d say those things to me.
As it turns out, I really couldn’t afford her services after that, anyway, but I guess it’s for the best, since she’s one of THOSE people.

And now she’s fired.

I’d like to remind the world that one is born with endometriosis, one does not acquire it - especially by negative thoughts. Oh but that research came out in January, 2009 - three years after The Secret appeared. I guess the charlatans and the medical community at large haven’t caught up with the times.
Ah but doctors are still telling patients to have a baby; that getting pregnant will cure endometriosis, too.

On February 13, my neighbor and I went to check out a medical marijuana dispensary really close to where I live. She’d told me about it - I hadn’t known there was one so close. I decided to put her on record at that place as my caregiver - backup if you will - in case my husband is not around and I am unable to go to a dispensary. My husband is on the list as my caregiver at another dispensary in Berkeley, so now I have two places I and my caregivers can go to.

The place looked as new and wonderful as the place I’d been to in Berkeley. There’s even a whole slew of rooms for massage, Reiki, yoga - all complimentary to the patient. How cool! At this new location, patients cannot medicate on site, like they can at the one in Berkeley. I also liked how this location wasn’t surrounded in barbed wire and looking like an armed compound from the outside, like the one in Berkeley does.

I talked at length with two different people about what might work best for my pain, and chose some pure indica strain marijuana, since I was told the butter was not very good there, and the only other edibles they had to offer contained gluten. I cannot afford a vaporizer right now, so I knew that I’d be smoking this indica strain out of a pipe. I was given a butter recipe so I can make the stuff myself, but I was warned not only by the staff but also by my friend that the entire house, and potentially the entire property would reek of marijuana in the process. Uh, I’m not okay with that. I hated it when my ex boyfriend used to make his rudimentary pot cookies (some weed and peanut butter slapped onto a wheat thin and baked for 20 mintues in the oven - yes it’s as gross as it sounds), because even that little bit of weed he cooked stunk up the entire apartment. I wonder now if it stunk up the entire floor and surrounding units…ugh…the poor neighbors!

So that was back on February 13th.

Eleven days later - last night - I got a chance to try out the indica for the first time.
When I got home from work, I decided to not take any Tylenol 3 - my drug of choice in battling endometriosis pain - because I wanted to try out this new round of medical marijuana.

When we got together with our neighbor last night to watch the latest episode of LOST, I asked her to show me how to work a pipe to smoke marijuana. Seems silly, but I’ve not smoked the stuff in at least eight years, and I’d never used a glass pipe before, so I wasn’t sure if it needed a wire mesh screen put in before the buds of marijuana was put in the pipe, or if it needed to be placed in whole or crushed, or what. So my neighbor showed me how to use her glass pipe.

I took two small hits off the pipe, and that was all it took to get me high. I didn’t want to do any more than that, because I wanted to gauge my personal dosage. I was high right away, but not experiencing pain relief. Sometimes the Tylenol 3 does that to me, so I let it go. I also noticed that right after smoking the stuff, my throat felt thick, and it was hard to breathe and swallow. I felt like my throat was closing up on me.
I didn’t get this reaction with the edibles, so I know it is a negative side effect from the smoke.
Another negative side effect is paranoia. I was hearing sounds inside the house that I thought were coming from outside the house. For example, the gas heater cracked and banged every now and again, and I thought someone was outside sneaking around, trying to listen in on our conversations…
Along with this paranoia came my inner demons. Insecurity, codependency and jealousy kicked up to levels I’d not experienced since I was with my ex-boyfriend. This is wholly unacceptable to me.

During that first hour on the indica, I noticed that I really wanted to stretch a lot, like I used to do whenever I consumed ecstasy. Every time I stretched my arms up or arched my back, I got a lot of pelvic pain. But my body needed to stretch, it didn’t want to be in pill bug stance. But stretching brought on the pain.

While on the indica - although I knew I was in pain, the message being sent to my brain was slightly dulled or delayed in registering the pain.

Compare with January 30th - my first test run of medical grade marijuana made into butter - in which the pain completely went away for an hour and a half. That was a sativa-indica blend. However, last night, just like on January 30th, I still got too high for my comfort, and did not like having to ‘take a trip’ just to get some pain relief.

My experience last night was similar to my experience on January 31 - I could give a detailed report as to how the pain felt. I was really high but could still feel every bit of the pain. I had moments last night where I was completely dissociated from the pain, but it didn’t last long. When we got home after watching TV with our neighbor, I began nearly uncontrollable nonsensical babble. I’m usually able to keep this at bay - it is a nervous tic of mine - but the marijuana kicked it up fiercely. I do NOT like that. I do not have Tourette’s Syndrome, by the way. This nervous tic began after I sustained a head injury in a head-on auto accident in 1994.

This morning, my alarm went off for work at 6:30am and I knew I’d be in too much pain to go in today. I hit snooze a few times before crawling out of bed at 7am. The pain ramped up to a 6.5 on the pain scale within minutes, and reached 7.5 within an hour.

I prepared the pipe my neighbor loaned me, and went out to the backyard to take a hit. I started off with one small hit and held it as long as I could, then slowly walked back to the house. I was stoned immediately, and could still feel the pain, which as I said, was a 7.5 on the pain scale.

Around 10:30am, I walked to the backyard again and took a big hit from the pipe. I held it as long as I could, and staggered back to the house, high as a kite. I tell you, I had the same experience as last time, where I was ready to break from the pain.
My entire pelvic region was angry and inflamed, and were I not high, I would definitely be crying from the pain. However, being as high as I was, the pain signal was somewhat muted. It still reached my brain, and I still felt the pain, and I still knew the pain to be severe, but my brain wasn’t receiving the signal in a crystal clear fashion. That is thanks to the marijuana, but also no thanks. I don’t want slight dissociation. I want full pain relief!!!

The nonsensical babble kicked back up again this morning after the first hit, and of course got a lot worse after the second hit.

I tried to get some sleep, because the marijuana incapacitated me, but I whined in pain on the couch. I then crawled into bed, thinking it would be more comfy, there.
It wasn’t. I writhed in pain in bed for minutes on end. I cried dry tears - sometimes the pain is so bad that I’ll cry, but no tears spill out. Finally, I drifted off to sleep, and drooled like an infant. It didn’t last long.
I woke from the pain again only 15-20 minutes later, and had to relocate back to the couch again.
No position was pain-free for me.

I want to also note that once again this morning, on both hits off the pipe, it was again hard for me to breathe, and my throat felt thick, like it was closing up on me. I did actually cough and gag after a short time, and I nearly threw up. I had to open my mouth and consciously remember to breathe and open my throat. This forced conscious breathing lasted for two hours, and was quite annoying to have to maintain.

Around 2pm, I declared myself not to be so high anymore, and so I split a Tylenol 3 pill in half and consumed it. The pain still did not abate. Nearly an hour after that, I took the other half of the pill.

By 3:30pm, the cramps finally went away - completely - and this was due to the Tylenol 3 - not to the medical marijuana.

I hopped on chat and told my husband that I’d just completed Round 2 of the medical marijuana testing, and had fired it again.

This could be it for me. If I am even willing to go for a Round 3, I will give the vaporizer a try - IF I can find someone willing to loan me their vaporizer, or IF I can take the indica I purchased to the dispensary in Berkeley and use one of their vaporizers. But honestly, I really don’t want to chance enduring another day without relief from the pain when the pain gets to or near 8 on the scale.

I must also note that on February 18, 2010, I saw my acupuncturist again, and she presented me with a new round of herbal medication to try. This is in powder format, and consists of the following ingredients:

• Cinnamon
• Lindera Root
• Cortex Moutan
• Red and White Peony
• Cyperi Rhizome
• Safflower
• Cat’s Tail

Today is my trial run with the new herbs. I have been taking this powder with hot water as a tea, and have consumed it twice so far today. Each time, I use only a teaspoon per one cup of hot water. So far, I’m really noticing the diuretic effects of the tea.

Right now, I’m on another round of Tylenol 3. This time, I consumed an entire pill. I am dissociated from the pain in a way totally different from marijuana. With the Tylenol 3, much of the pain is eliminated, and any remaining pain is detached - I know it’s there but its signal to my brain is severed. I can’t give you a full report of the pain, because it’s not nagging or annoying me. With the marijuana, the pain is muted, yet still nagging.

Also with Tylenol 3, I am high functioning. I am not knocked out from it like I am knocked flat and stupid after only one hit of marijuana. I am not rendered mentally ill with insecurities, jealousies, and babbling. I am able to carry on conversation; I am able to do online research and type up my journal post. I cannot do any of that on marijuana - I’m too busy staring off, drooling, and moaning from the continued pain.

Tylenol 3 remains the only medication I can use, which provides excellent pain relief and causes very few side effects. Of course, the one big problem with the Tylenol 3 is that using it every month for the past 5-6 years, it is in fact slowly destroying my liver.

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.

Today I am super tired, have mega pms cravings, and low dull uterine and ovarian cramping. Doom is due by Sunday at the latest.

Yesterday I allowed myself to feel slighted by some stranger on IRC. I felt like she gave me a bunch of shit about my pain issues, and basically wrote me off because I have not yet seen a reproductive endocrinologist, nor will I try further hormonal treatment for my pain issues.

The whole conversation on IRC started with medical marijuana questions - I wanted to know if Prop 215 had worked out well for anyone locally. I did get some good advice, but this one person stuck in my craw.
She asked what my pain issues are. I told her I suffer from stage III endometriosis. What happened next is what often happens - people ask me the same tired old questions - “have you tried this for the pain?” YES. “have you tried that remedy?” YES. “have you had surgery?” YES.

Honestly, people, do you really think I would live with this illness for 23 years and NOT try all the basic shit in the books, first, then surgery, then go from there?

Then she asked if I’d seen a reproductive endocrinologist. I told her no, I’ve not been to one, yet. This is where she got all huffy with me and basically wrote me off as some ignorant wretch.
I looked back through my records - I’d tried in January and again in April 2009 (last year) to see an endocrinologist. I forget why the appointments fell through.
The person on IRC seemed like she was telling me that I obviously didn’t try hard enough and therefore I must be happy to be in pain all the time.
I told this person that I’ve seen other specialists in the past 12 months, but she stopped talking to me.

I wanted to yell at her and say IF I HAD THE INSTRUCTION MANUAL TO MY BODY, I’D HAVE READ AND IMPLEMENTED IT.

Why did I feel so slighted by someone I don’t even know?

The answer is that I’m in defensive mode with the world at large over my illness - all the time.

People range from well-meaning to outright abusive towards me with regards to my illness. The people in question range from absolute strangers online and on the street to co-workers, friends and family. All. the. time.

I can tell the same people what I’ve tried and what I’ve not tried, what I’ve been through with what treatment - several times - and still get the same questions asked again and again. This is precisely why I started blogging about my pain, the what I’ve tried, the doctors, the vitamins, the diet in general. I’m always repeating my story to people, and therefore I’m always defending my rationale for trying or not trying this or that treatment. Everybody’s got an opinion. Everybody thinks they know best. Hell, it seems like everybody thinks I must be a total fracking idiot, living with endometriosis and not doing a damned thing about it.

Even presenting all this information on my website goes unnoticed it seems. People still ask me the same tired old questions. I copy and paste a url to them. They don’t care. People just want me to shut the hell up and be healed already. They want me to quit my whining. They want me to stop bringing them down.

This same type of write-off I get from people extends to my doctors and specialists. They all get tired of me after awhile and cast me off. That’s why I’ve seen 15 doctors in 9 years and am now on my 16th and counting. My current gynecologist lost her patience with me about a year ago because I wouldn’t get another cauterisation type laparoscopy by a different surgeon - I want an excision laparoscopy and I need to be sure of the doctor before I go and get the surgery. Also, I work very hard for miniscule money - I make $11/hr the expensive Bay Area of California, and I have a very expensive diet, no thanks to all of my damned food allergies. Also, I cannot take time off work just like that. I need 11 or more days off work to recover from surgery. It took 11 days and I was still in a heap of pain upon my return last time, and that was a desk job. I have a preschool job now. Also, there’s the co-pay. It cost me $1,500 out of pocket last time, but I was making $19/hour. I have different insurance now and it’s a different surgery that would be performed compared to last time. The co-pay could be much more. It doesn’t matter though - my gynecologist thinks I can easy peasy just take the time off work and get that “minor” surgery taken care of anytime! Oh and you know, I was not told about in advance, and did not ask for those hideous stretch marks I got from being inflated with carbon dioxide for the laparoscopy.

She actually used phrasing suggesting I liked being in pain because I would not schedule a second surgery.

She actually gave me an ultimatum of January 2010 to find pain management and other specialists, because she will not be refilling my Tylenol 3 prescription anymore.

Goodbye, Dr. Lisa Bernard-Pearl. You worked so well for me in the beginning, but in the end you turned out to be just as mean as the rest of them, casting me aside, giving up on me. You gave up on me. You threw me away.

On January 6, 2010, I had an apointment to see a pain management doctor. I was on my way there when traffic got snarled. I phoned to say I would be a few minutes late, and the receptionist told me to just turn around and go home, because the doctor would not see late patients. I told her I left work on time, but there was unforseen construction holding up traffic. She asked me if I had the new patient paperwork. I asked her WHAT PAPERWORK.
Apparently paperwork is usually snail mailed to new patients, but a particular receptionist at that office emailed it to me. I told the person on the phone I never got it.
I came back home in tears and looked through my email. I found the email - it had been sent in an unprofessional manner - it looked like spam because it had no subject line, was from a stranger’s first name only, and contained an attachment. OF COURSE I never opened it. I called the office back to complain about the woman, and they did apologise. However, there was no seeing that doctor again - it was her last day in that office - she’s moving to an office 50 miles north of me. They told me another doctor in that office would call me but that never happened. In the meantime, I’ve been too angry to call that office back, and too apathetic to find another pain management specialist this month.

However, on January 21 I saw gynecologist Dr. Streitfeld, on January 23 I saw Dr. Ellis, and on January 29 I will see Dr. Fredian. Today I put in a request to see Dr. David Adamson (referred by Dr. Streitfeld), who is a reproductive endocrinologist, and I also put in a request to see Dr. Grace Eng - the same endocrinologist I tried to see last year around this time.

All of this costs money. Most of this takes time off work. Both are difficult for me, because I miss enough work as it is by being bedridden, no workplace I’ve ever been with wants me to also miss more work on top of that for doctor visits, let alone recurring surgeries.

You know, the record on repeat is enough to make me spit. Really. I was sick of it three years ago. I was tired of it five years ago.
Just go back through my entire journal. I’ve got diary entries dating to the 1980s. Have a good read. And don’t offer me any more insight, suggestions or advice about endometriosis and treatment options unless I ask for it.

Postscript ~
I felt damned near homicidal tonight. I spent all night writing this blog entry. I stepped away to do laundry and grocery shopping, and ported over some more really old diary entries. I took half a Tylenol 3 to medicate against the rage. Rage is the best way to describe how I felt all day today and still feel to a degree even now while drugged.

I’m feeling bad for myself today.

I saw a new GYN today - his name is Dr. Hank Streitfeld and he was referred to me by two of my co-workers. We went over my surgery report, all the doctors I’ve seen for endo, my diet and herbal remedies, other specialists I’ve seen, my expectations, and what he does, can do and can’t do.

Basically, he thinks both cauterisation type laparoscopy and excision laparoscopy has its place. He prefers Lupron as his drug of choice for fighting endometriosis. He agrees with me that I can’t be on hormones or Lupron to treat the endometriosis; he is able to cite enough studies where women are as sensitive as me to drug therapies and went cuckoo. He agrees with me to steer clear of the Nezhat brothers. He had good things to say about Dr. Andrew Cook and Dr. David Redwine, and he also mentioned a Dr. David Adamson who also does excision surgery - said I should definitely see both him and Cook to get all my questions answered.

Then he told me that due to the lack of pain relief from surgery, I should consider that I might have a condition called adenomyosis. I’ve seen the word mentioned in the endo forums, but never researched it. According to the Mayo Clinic website, “Women who have had prior uterine surgery, such as a C-section or fibroid removal, are at greater risk of adenomyosis.” Well does laparoscopy count as prior uterine surgery? Did I have adenomyosis before the laparoscopy or do I have it as a result of it? Did it just come on naturally in addition to the endometriosis?
Dr. Streitfeld said that adenomyosis may be detectable on an MRI - so that’s something I can consider - cuz the only other ‘real’ diagnosis of adenomyosis comes through removal of the uterus and dissecting it to find whether adenomyosis is present.

Dr. Streitfeld was every bit the cool doctor my co-workers said he would be. I liked his no bullshit demeanor, his relaxed and calm style and his staff. I’ll totally recommend him to people. I’m just sad he couldn’t be the doctor for what I need.

I’m at T-minus 11 days until the next bedridden. Even though I got good referrals out of Dr. Streitfeld, it’s just the idea that I’m still going doctor to doctor, trying to find help for the debilitating endometriosis, and on top of it, now I’m told I should consider the idea that I might have adenomyosis on top of the endometriosis. And so the fighting spirit is drained. I’m crying like a scared child; “Mama, I don’t wanna go to that bad place again!!! Why can’t anybody help me mama?”

I tend to forget about journaling when I’m NOT in pain… I noticed that the last time I journaled here was 16 days ago.

Well! I am happy to report that for 10 straight days, from November 23 to December 3, I ranged from pain-free to low intermittent pain! Yay!
I must note that I’ve done nothing drastically different with my diet. This of course gets a yay and a boo, because I keep holding onto the idea that my diet is what exacerbates a lot of my pain. I’ve been eating chocolate, cheese, refined sugar, caffeine … all “forbidden foods” … and no pain resulted.

I did have about half a cup of champagne - maybe less - on November 28, and two days later, I experienced intermittent shooting pains in the front uterus/bladder region. However, that was also day 7 of the new cycle, when I ovulate, and will often experience mittelschmerz. So even consuming booze can’t likely be directly linked to causing pelvic pain in that instance.

This leaves me feeling that there’s nothing causing this good health aside from the endometriosis WANTING to behave. I had not embarked on any new medical treatments until December 3rd.
I’m getting as much exercise as I normally do. There’s no new medications or supplements in my diet, but I have been a bit more regular with taking evening primrose oil and niacin.

While I am ecstatic for having a nice run of pain-free living, I am absolutely furious because I cannot say for fact that I MADE myself pain-free via diet/excercise/medication/supplements/etc etc. It seems that it’s only because the bastard disease wants to behave right now.

But throughout those 10 straight pain-free/low pain days, I smiled, breathed and enjoyed each minute of healthful living.

On December 3, I went to a new acupuncturist. According to my calendar, I’ve not been to an acupuncturist since June 12, 2008. I had given up on acupuncture for awhile, because I didn’t feel the Chinese herbs were helping, and the Chinese male acupuncturist didn’t make an effort to try to see me regularly. This new acupuncturist is female, anglo redhead, and wrestled with endometriosis for years. I was referred to her via a friend. So I think I’m off to a better start this time around.

After my acupuncture session, my husband and I went to our friend’s house for dinner, and they were getting into the wine and whiskey (not together mind you, some had wine, some had whiskey!) I took a small sip of a nice whiskey, and I drank two shot-sized glasses of port with our friends.

The next day, on December 4, I experienced right side ovarian pain, which was stabbing intermittently throughout the day.
Today, I experienced (and am still experiencing) ovarian pain on BOTH sides. The feeling is of stabbing intermittently, with continually low dull pain in the ovaries, including the lower front uterus. Low back pain is also noted, and all day I have had moderate pain radiating down the outer hips to my outer thighs. There is occasional stabbing pain in my hips/thighs when I bend forward or sit.

Is it because I drank a small amount of alcohol Thursday night? Or is it just that my period is due in one week?

I’d like to note for the record, according to my calendar, that in 2008, I did not consume ANY alcohol for 77 straight days. Five days later, I ended up in the emergency room because my cramps were so bad that even I was scared.

So I’d like to officially NIX any idea that consuming alcohol recently is what brought on my cramps, and make the motion that my cramps have set in simply because It Is Time - I’m one week out, and this for my body is normal to be getting cramps.

The cramps in question this time around have been hovering at 4 - 5 on the pain scale.

Still, I’d like to give up cow’s milk-based cheese and ice cream for a few months straight and see if that has any effect. It’s the only cow’s milk-based food I still consume directly.
Indirectly, whey is in a lot of foods, and so I know I still consume cow’s milk indirectly on a regular basis. I’ll go with omitting the direct ingestion (cheese, ice cream), first. I rarely eat cow’s milk-based ice cream anymore anyway, so that should be easy enough.

I have a lot of pessimism in this - I firmly believe that any lack of pain is simply due to the illness behaving itself, and therefore the blame game on my part emotionally just really needs to stop already. I was born with this illness for cryin out loud. It has a mind of its own. I don’t think anything I do will influence it without adding side effects and/or consequences to the rest of my system.

This doesn’t mean of course that I’ll go out and get smashed, gorge myself on ice cream, and eat 50 pizzas. I still have allergies out the wazoo to contend with, and a desire for overall healthfulness in general.

I am so thankful for the 10 straight pain-free days I was able to have this month. I hope that once I emerge on the other side of the coming cycle, that my body can meet, if not exceed that record.

Oh - one more thing - I cannot remember if I told you where I’m at on the medication front. I spoke to my gynecologist by phone last week, and she expressed disappointment that I wanted yet another Tylenol 3 refill. The vicoprofen just wasn’t working out for me - I was getting dangerously depressed on the stuff after just a couple of doses during my period. I go through about 10 Tylenol 3 a month, which exhausts my 30-day supply in 3 months. So I call my gyn every 3 months. She told me she thought I was going to see a pain managment specialist. I told her I’d not been able to find one to see me in the evenings or on weekends, because as a teacher, I NEED to be at my job at my scheduled time Monday through Friday. She didn’t care for my answer. So She’s given me a deadline - no more refills after this one. Come February/March, I’m on my own, she’s done prescribing for me. Yet another doctor who thinks I’m drug seeking. This is totally common for women suffering with endometriosis to be treated in this fasion by their doctors, and it’s pathetic.

I told my gyn I had an appointment with an acupuncturist, but she didn’t count that as “pain management”. Many doctors still consider acupuncture as folk remedy. Whatever. I’m giving it another shot. I’ll of course also be contacting her pain management and surgeon recommendations.

I got my period twice this month, hence a ‘Blue Moon Menstrual Month’. The last time this happened was in April, 2009.
I wonder how often this happens for me…gonna go back and look at the calendar for a minute…

…According to my calendar, I got my period twice in a month for the following months:

June 2006
November 2006
December 2007
June 2008
November 2008
April 2009
October 2009

So it looks like my ‘Blue Moon Month’ occurs twice each year (2007 being the odd year because I had been on hormone therapy after pelvic laparoscopic surgery that year).

For the record, it does not coincide with the Blue Moon for the actual Moon. Those instances were July 2004, June 2007 and December 2009 so far; occurrence averages about every 2.7 years.

Now, since I’m looking at planets, this gets me interested in Astrology, so I looked it up - Jupiter, Uranus, Neptune and Pluto are all still out of whack in the sky. That is to say, all four were Retrograde, and two have since stopped going Retrograde (which means they are now considered Direct).

Jupiter went Direct on October 12, and Pluto went Direct on September 11, but Uranus and Neptune are still completely Retrograde.

Jupiter and Pluto are still playing catch-up and won’t be in their place of Return until December 2009.

Neptune won’t be in its place of Return until February, 2010, and Uranus won’t be in its place of Return until March, 2010.

Why the heck would I consider astrology?, you may ask.

Well! This leads to a much larger discussion, but the short of it is that in the 24 years that I have wrestled with endometriosis, I have tried so many things to try and figure out the why and wherefore of this damned pain, and that includes such strange things as astrology and belief in deities.

The longer answer begins with two statements:

1. Likely due to my fundamentalist upbringing, I have conditioned my thought process from an early age to leap to punishment to explain why I am in such pain all the time.
2. Also likely due to my fundamentalist upbringing, I harbour a lot of guilt over having this illness.

With #1, I have a constant unconscious dialogue that begins with asking myself, “What did I do to deserve this?” I answer my question with, “You must have brought it upon yourself, somehow.” I proceed therefore to lay blame to everything from my recent diet, habits, thoughts, illnesses, exposures to contaminants, vitamin intake or lack thereof… you name it. And that’s just on my end.
I also go the pity-party route and blame the environment I grew up in, the birth control pills my mother was taking just before conceiving me (and which she’d been on for something like 12 years straight), the fact that my mother smoked like a chimney throughout and after her pregnancy with me (and still smokes a lot to this day), and my mother’s genes (her mother and sisters all had/have classic symptoms of endometriosis, as do my female cousins).

With #2, I miss a lot of things in life because of this illness. I’ve missed a lot of work, concerts, birthday parties, being there for friends in the hospital, babysitting gigs, charity events, activist events, doctor appointments and more. This leaves me feeling like I’ve flaked on people and let people down. I feel this way because so many people still do not understand much about what it means to live with endometriosis. The clearest example I can give you just happened yesterday:

I awoke on my first year wedding anniversary YESTERDAY and without warning, gushed forth like the bathtub scene in Stephen King’s “Carrie”.
I had barely any symptoms leading up to this menstrual cycle, which was two days early. I had no spotting, no low back pain for days, no intense fatigue, no feeling of having to repeatedly ‘check my undies’ that I get up to 48 hours prior to menses. I had three days of minor right side ovarian cramping. That’s not unusual - sometimes I get that for a week straight, and not even right before my period. The low back pain came in the wee hours before waking yesterday, and I thought it was the bed I’d slept in (we were out of town).

On my fricking wedding anniversary, I bled like a stuck pig and was not prepared in the least for it. I had no pads, no wheelchair, no security blanky and pillow, no rice heating pads.

My plan was to wake, use the bathroom, then snuggle with the husband. Instead, I woke, used the bathroom, and sat crying with my head in my hands, on my first year wedding anniversary.

I began immediately with the blaming dialogue. My husband tried to talk me down, but I’d catch myself returning to the topic over and over again, muttering aloud that this or that could have brought on the pain and bleeding. Everything from all the chocolate we’ve been eating to the half hour we spent in the jacuzzi the night before.

I spent all day high as a kite on Vicoprofen yesterday. We were in Mendocino, hours away from home, and I had refused to be taken home right away. I took the drugs and we visited as many little shops as we could. We ate brunch. We explored one of the cemeteries. We walked out on the bluffs and stood watching the ocean together. We indulged in a chocolate orgy yesterday - we had cake from Mariposa Bakery that we’d brought with us, and I’d gifted my husband with handmade chocolates from Gaslight Emporium in our own hometown, and we bought even more chocolate from a place called Frankie’s, as well as buying truffles from a street vendor.

We left Mendocino when we said we would, and got in some of the last sunset pictures we could on the way out of town. We had decided at the outset of the trip to take Highway 1 home, to enjoy the scenery and the ocean view.

However, my pain ramped up considerably on the way home, and I took a whole Vicoprofen pill in the span of one hour to combat the pain. This was my first time taking that much Vicoprofen at once, cuz I’ve been consuming only half a pill at a time.

What resulted from being on a whole pill of Vicoprofen (7.5mg Vicodin and 200mg Ibuprofen) was very similar to the experience I had when I had taken a whole pill of oxycodone; “I thought I was drowning/suffocating to death. I literally didn’t think I’d make it through the night. That was 5mg though.”

In addition to that, we were on some very twisty/turny ocean-side roads. I had the spins real bad from the medication.

Ibuprofen is a bit of a diuretic, so I continually had to have my husband pull over so I could pee or so I could stand in one place and get some fresh air so as not to vomit. I kept a paper bag in the front seat with me just in case I had to throw up.

The drive, which is supposed to take about 3 hours, took TWICE that because of all the stops I needed, because of how slow I needed us to drive because of the dizziness and nausea, and because of road work (in some areas, there had been mudslides and the road was down to one lane!). What a harrowing experience it was to get home last night.

I cried, I moaned, I begged for my death, I hallucinated.

It didn’t help that due to the season being Autumn, there was a lot of wildlife on or near the roads after dark. I’ve never seen so many deer in my life. There were possums, raccoons, hares, and, I shit you not, there was also a large brown cow sitting on the cliffside next to the road at one point. Just sitting there calmly, chewing as we drove past. I flipped my shit and my husband had to reassure me it was not another hallucination.

I was convinced a deer would land through our windshield before the night was over.

I think the worst trip I ever had prior to this is probably the first time I ever ate a pot brownie. Back then I felt like I was continually going backwards on The Gemini roller coaster. What a horrible night that was.
So last night, on the full pill of Vicoprofen, I felt like I was on a continuous roller coaster from hell - picture a giant wooden roller coaster like The Gemini with steep hills that won’t let you off for six solid hours. That’s what it felt like. Every muscle in my body was tensed to the max, which made the pain worse. I tried and tried to relax. I tried to start with just my eyebrows and I could not do it. That’s when the crying started, really.

We got home around 1:30am, according to my husband. I washed my face, put on my pajamas, and put a few things away that we’d brought in from the car, and prepared for bed. Despite all that I’d gone through, I was lucid enough at that point to be sensitive to my husband’s needs. He was all jacked up from the stress of the ride, too. He was the one having to steer us through all those roads and having to endure my crying and whining (to the point where he just blasted the radio for a long time to drown me out, but I didn’t care that he did that cuz seriously, I was a mess and it was making him a mess).
I warmed up all available heating pads in the house, gave my husband a massage as he sat in front of me on the bed, and then ordered him to take half a Vicoprofen and lay face down on the bed.
Then I put the heating pads all over his back and just let him lay there while I settled into bed.

My husband said that when he woke this morning, he had no trace of back pain, thanks to the care I’d given him. :)

As for me, you know I stayed home from work today. I’ll be staying home from work tomorrow, too. I’ve already called in sick. There’s no way I’m playing the “wait and see” route this time. I need the extra day and I have no false hopes that I “might” not bleed as heavily or be in as much pain tomorrow as I was in today and yesterday.

After 24 years, I’m tired of this constant every month battle of wits, this false notion of “thinking positively and the pain MIGHT go away” bullshit.

The reality of the situation is that I have an incurable illness which is an immune deficiency, which means it ravishes my entire body, and I HAVE NO CONTROL OVER THIS ILLNESS BUT TO LET IT RUN ITS COURSE when the pain flares.

I want to get this through my head as well as through everyone else’s heads - go look at my list again of what I’ve tried over the years.

Eventually we will all have to come to a place of acceptance - that there is no overcoming or beating this illness - only living with it…if we are up for the job.

Some days I wonder how much longer I’ll be up for the job.

Back on September 16th, a day before my birthday, I wrote a wishful thinking post. I had resolved “to live the next 11 days as well as I can, and enjoy life the best that I can, until the darkness falls once more”.

The very next day, on my birthday, while at work, I was suddenly seized with severe bladder pain, which lasted a few minutes. This happened around 11:45am, during the lunch rush, where I’m supposed to be monitoring children aged 3-5 eating their lunches, keeping them in their seats, resolving fights, reminding them to wipe the table and sweep up after themselves, and help them open up their food packs. During the lunch rush is when I am needed by no less than three children at a time, for over an hour, for one thing or another. All told there are around 50 children at lunchtime, and there’s about five or six adults. It’s about 1 adult per 8-10 kids. For some reason, once you mix the age groups, the 1:4 or 1:6 ratio for the 3-year-olds no longer applies. So it’s constantly overwhelming at lunctime, and here I was getting unexplained knifing pain in my bladder. It wasn’t uterine. It wasn’t ovarian. It wasn’t cervical. I don’t normally get bladder pain.

Now, about a week prior, I’d had a yeast infection, which I promptly took care of with Diflucan. I got it because I didn’t shower before intercourse. Women with endometriosis are prone to yeast infections at the drop of a pin, and you and your partner both need to be clean before intercourse to spare you the chance of infection. I lagged in my duties.
Anyway, I wondered if Diflucan can cause a bladder infection, but in checking the side effects lists, I don’t see evidence of that. Perhaps the yeast infection had turned into a bladder infection? I’m still wondering about that.

So the bladder pain I had on September 16 only lasted a few minutes, then was gone. A few minutes of course feels like an eternity while it’s happening, but it did pass.

I did pretty good for the next two days - Friday and Saturday - though I did have some pelvic pain twinges on Saturday September 19. So perhaps I was good for only ONE day if you wanna get technical.

On Sunday, September 20, I woke with severe low back and pelvic pain.

As I was getting dressed, my back went out - my upper left scapula was pinched the most, and it was hard to breathe. I could feel the pain under the back of my ribs. I had no range of motion. I spent most of that day with intermittent back, pelvic and shoulder pain. I took half pills of Tylenol 3 and whole pills of Ibuprofen all day long. The pain would seriously disappear for minutes or an hour and then return again. It was crazy.

On Monday I had continued flank pain, and a cankre sore popped out around 11:30am. I went to the doctor right after work and was told I had swollen lymph nodes, that I was fighting something, but that I wasn’t contagious. The low back pain continued through the evening, and I went to bed with a heating pad that night.

Tuesday was more of the dame - low back pain, but get this - I awoke with shin splints. WTF!!!
I also had developed a sore throat, sores forming under the back of my tongue, moderate fatigue, and sore shoulders again. That day I also had some pelvic pain, and my left thumb broke open again. I had a nagging headache by 8pm that night. I napped when I got home, and my body temp dropped during the nap - I got goosebumps, I was so cold, and the house was 73°F.

I seriously started feeling like I was going crazy. But now, after reading the side effects for Diflucan, it all makes sense. I just wish I’d been more intuitive the last times I’d taken Diflucan, to establish whether this is always true - whether I always have these side effects - or if it’s something new because my body continues to grow weaker because of this stupid immune system disease called endometriosis.

Wednesday - sigh a breath of relief - I felt better.

But we’re not done, yet!

On Thursday, September 24th, I felt quick knifing very low uterine/bladder pain 2-3 hours after consuming 1.5 cups of Sierra Mist pop, which I was craving. I never crave pop anymore, so this must be a serious bout of PMS coming on. Of course, pop contains corn syrup, which ALWAYS causes pelvic pain whenever I consume it.

I didn’t bike to work at all that entire week.

On Friday, September 25th, I experienced intermittent dull uterine pain all day. However, after work, I decided to bike to my therapy appointment and from there bike over to the company BBQ. I was tired but I did it, in a show of stubbornness.

That night, around 10 or 11pm, I became very dizzy as I was leaving my friend’s house. The pelvic pain had ramped up while I was hanging out with my friends, and so I’d taken 600mg Ibuprofen. I don’t think the dizziness was from that, since I take Ibuprofen so frequently.

On Saturday - yesterday - our town was experiencing another heat wave. Despite being 87°F outside, my husband and I shopped at some local Halloween stores. Yesterday I consumed a white chocolate raspberry blended mocha (with cow’s milk) because I was really fatigued and craving the caffeine (HELLO PMS!).
Last night my husband and I were intimate and right afterwards, I felt nauseated, and then the cramps started. I checked myself and there was brown blood. I thought for sure I’d started my period. I went to bed wearing a pad but the bleeding stopped, never touching the pad.

Today I’ve been seriously tired. I slept for about 10 hours and haven’t wanted to get up all day. The low level nausea has been with me all day. I’ve had the feeling that my period is starting but every time I check, it’s not there. I’ve had annoying low back and pelvic pain all day.

It’s nearing 5pm and I’ve been on the couch the entire day. I had planned to attend a birthday party for a friend, a parking lot sale, and then see another friend play with his band tonight.

I’ve missed everything so far but the band, and I’m not sure I’m up for that, either.

So let’s recap - where did those 11 days go that I was so excited to live for?

Of those 11 days, I got to enjoy 2 days pain-free.

2 days.

Out of the past 27 days, I have enjoyed roughly 8 days pain-free.

I have not gone back to yoga class, and I’ve been in too much pain to do the yoga video that I own.

I have continually doing slow stretches and fighting through the pain. I often do the wide hip circles when not out in public (cuz doing those makes one look like a pole dancer, heh) in an attempt to ease the low back and pelvic pain.

To anyone who doesn’t suffer from chronic pain, I hope this gives you an educated visual, and I hope you understand it a bit better when I tell you just how tired and depressed I am.
Just because I have high hopes, doesn’t mean my body wishes to cooperate.

Oh and to those of you who still think wishful thinking and being positive will end my pain, you can go to hell.

The low back pain was so intense that I rolled out of bed around 8:30am this morning and hobbled like a little old lady to the microwave so I could heat up my corn heating pad.
Today again I have been refusing medication. I’m continually testing how much pain I can withstand before taking meds. This is much easier to do when I’m not moving around doing housework or chasing after young children at work.

Around 11:30am, I got tired of being couch-ridden, so I got up and carefully loaded up a basket of laundry. I placed the basket onto a luggage dolly and took the laundry out to the back of the house to the little shared laundry room. By the time I got back inside the house, the bleeding and cramping had returned. That’s all it takes to set off the pain.

Still stubborn, I set my meds out but did not take them. Instead, I set about cleaning under the kitchen sink, which was still a mess after the last ant invasion. I removed all the items under the sink, sponge-cleaned it, carefully applied a new layer of AntEater along the back wall, and replaced and organised the items.

Next, I took care of the food recyclables in the fridge and took inventory of what grocery shopping needs to be done tonight or tomorrow, and then I had a light lunch.

It is now 1:30pm and I am finally crying ‘uncle’. I will take the ibuprofen and Tylenol 3. But this makes me mad, because now I’ll be a useless zombie for hours. My husband will be home from a gaming convention in the next hour, and I wanted to go to Daiso. Perhaps we’ll go anyway, even with me as a zombie.

All day I have tried to stretch out my back to no avail. It’s so locked up and painful. I cry out in pain to just arch my back a teeny bit. My body wants to completely fold in on itself like a rollie-polie.

One thing I forgot to mention was that on Friday, Doctor Bernard-Pearl, the gynecologist who referred me to the oncologist, called me back about my cervix question. She told me that I do have an ectropion cervix, but it’s not something to be worried about. She said she sees this all the time in women, and told me that basically my cervix looks like a 16-year-old’s cervix to her, where ectropion is quite common in teens. She said it is in no way tied to the cervicitis issue, and to not be worried.
Then we discussed my visit to her referral. I told her how arrogant the surgeon was, and that she wanted me under the knife ASAP, to remove the uterus, the ovaries and the cervix as the only ‘cure’ for endometriosis and my pelvic pain in general.

Well wouldn’t you know, Dr. Bernard-Pearl was shocked! She was disappointed! She told me she would never have referred me to this surgeon if all that would be offered was total hysterectomy. She told me she does NOT think hysterectomy is the answer for me. She told me that the gynecological oncologist she referred me to is one of the best excision surgeons around, and that’s why she sent me to see that surgeon - for excision - not hysterectomy.
She then asked me if that surgeon had any other alternatives to offer me, such as medicinal treatment. I told her no, the surgeon outright refused and referred me to yet another doctor - Pollycove - who might treat medicinally.
My gynecologist huffed, and said she herself could just keep treating medicinally at this point. She apologised to me and expressed again her disappointment, saying that this gynecological oncologist is one of the best surgeons in the region, along with Dr. Nezhat.

I fell silent at that point. My own gyn likes and respects Dr. Nezhat?!?

I drew a breath, then told her not to refer me to Nezhat next, cuz I refuse to see him - he has too many lawsuits and has a shady past and I won’t have any of it. I asked if she knew Dr. Cook. She said no. I asked her if she knew Dr. Redwine. She said no. I sighed. I told her I’d seek out Dr. Redwine myself, then, since of the two, he’s more well known and openly respected on the endometriosis forums.

So that’s that. I will continue medicating and trying yoga and Qigong and other stuff to manage the pain, and save up money and vacation time to go to Portland to see Dr. Redwine.

I’ve had many numerous ant invasions this summer - seriously determined ant invasions this year where no matter what you do, they won’t go away.

This morning I woke up to another ant invasion, and this is after we had Omega exterminator spray INSIDE the f@#$&!* house on Tuesday. I broke down immediately. I’m seriously about to be committed after all the ant invasions. They got in under the sink, and didn’t even touch the garbage can. They just bee-lined straight on top and into the sink for teeny scraps of food left in the garbage disposal after I ran it last night.

I spent half an hour first thing out of bed performing an ant massacre, when I needed to be eating right as soon as I woke up. Needless to say, another hypoglycemic attack hit me, as happens when george is near.

And then george himself showed up.

Now I do the ’should I go in to work or just stay home’ routine. The pain will be here. I just don’t know when.