I don’t know how much more I can take.

My period came yesterday and I’ve been home and bedridden ever since. On top of it, last night my neck/shoulder went out because I slept wrong. I wanted my husband to stay home with me today but he wouldn’t. I hitched a ride to the doctor via my neighbor and got some muscle relaxers. I took a whole Tylenol 3 and shuffled home because I did not have exact change for the bus and can never remember how much it is, anyway. It is a 0.4 mile walk, but a bit harrowing when in pelvic pain and trapped nerve pain in the neck/shoulder.

The thing I’ve been saying to my husband since last night is that I just want to be put out of my misery. I told him repeatedly that I need a caregiver, but he needs an equal partner. I told him for that reason, the marriage probably isn’t working out in his favour. He insists he wants to keep me around, but I don’t see the point. I don’t want to be disabled. I don’t want to be needy. My body is broken and has other plans for me.
He won’t take me out back and put me down, though. I told him he’s selfish for that.

Then again, I’m selfish for wanting him to do the deed. But I won’t do it, myself. I told him it’s a really good thing I’m seeing a psychiatrist, today, because between the trapped nerve in the neck and the ongoing/worsening endometriosis pain alone, I NEED the psychiatric help right now.

My psychologist has ideas about what my diagnosis is, but I’m going to wait til the psychiatrist has also evaluated me before I start educating myself on how to care for myself with yet another diagnosis.

And a large part of me wonders why I keep seeing specialists for all these problems. It does nothing but take my money and insurance, and makes me miss more work because of the appointments, and none of this has actually HELPED or CURED me, anyway. I should just go on like all the other broken people in the world, until I decide like a lot of them that I’m DONE and just hit the reset button on my own, in peace.

So there’s going to be a second surgery.

On Friday, September 10th, I started feeling low pelvic discomfort/fullness. I had the need to ‘check’ myself all day to see if menstruation had begun.

Saturday morning, my husband and I were intimate, and I experienced pain as I often do. :( I noticed bright red bleeding right afterwards. I assumed this was just the little pool of blood that sometimes leaks out from the cervix and sits at the end of the vaginal canal right before menstruation begins. Within half an hour of intimacy, I experienced uterine cramps which lasted all day. However, as I had hoped, the bleeding turned to spotting quickly enough, and then stopped by afternoon. For the pain, I took 600mg Ibuprofen in the late morning, then took half a Tylenol 3 and more Ibuprofen in the late afternoon.
My husband and I went to a housewarming party that night, and I brought my heating pad with me. I did need it. :( I took another half a Tylenol 3 around 9:45pm, and got all the codeine effects – dizziness, fuzzy-headed, super sleepy, heightened sensitivity to light and noise, etc. Those things don’t mix well with a very alcohol-ladden house party. We were home a few minutes before midnight…on a Saturday night…because of my pain. LAME.

The night out, despite the pain, was not too bad. I had my usual bout of social anxiety, and I was a bad girl and took a few sips of whiskey (it had honey it it, how could I not?). As we were saying we wanted to leave, the hostess said she needed to re-introduce me to a friend of hers, who also has endometriosis.

So I talked with another endo sister and stayed awhile longer at the party. ;)
She highly recommends Dr. Cook down in Los Gatos. He’s the guy who only accepts one’s money, not insurance, but the woman I talked to last night is three years post op and says the pain has not returned. She had stage IV endometriosis, and had to have one ovary removed, as well as part of her vagina, her cervix and her uterus. She also had to have part of her bowels resected, because of the endometriosis. Really bad stuff. I asked a lot of questions about the one ovary thing – since I am convinced that I’ll have to lose my left ovary eventually (this is twice now that it’s been pulled by adhesions to my uterus).
She told me that because she had so much removed, her body freaked out. She told me that although the endometriosis pain disappeared, she had to contend with nerve damage on her bowels, and all of her organs trying one by one to shut down on her. She ended up with asthma and skin lesions and extreme fatigue and all sorts of stuff, which took over a year to clear up, and only with the help of some kind of metabolic therapy. She said she was dying a slow death. To this day, three years later, she still has issues with either keeping in or letting out a bowel movement, I forget which.
Despite such horrific issues, she says she’s glad she had the surgery.

My opinion is: given the choice between knowing the behaviour of my illness and not knowing if I will die from all the pain and suffering caused by a surgery such as described above, I will always choose my illness. Given the choice between a one year recovery and my current illness, I’ll take my current illness because I miss less time off work and thusly less money. Given the choice between possible permanent nerve damage from surgery and my current illness, I might prefer my current illness. Depends on where the nerve damage, is, I guess. I don’t think I would like to have to live with bladder or bowel control issues for the rest of my life. That stuff isn’t supposed to happen until I’m elderly. :p

For over a year now, I’ve been going on about needing excision laparoscopy to properly treat my pain, and now that I’ve talked to a woman in person who has had excision done, now I am chickening out. This is silly. I can easily get just as much nerve damage from electrocoagulation surgery as I can from excision surgery. Hell, I can get organ damage just from the laparoscope going into me. So this fear stuff needs to stop.

…there’s something else. When I did a search on my blog for how many times I mentioned ‘excision’, I read back through my entries and got really mad. You know, the human brain forgets things, and there’s something to be said about that. I feel like had I just left all those feelings forgotten, then I wouldn’t be so angry as I am right now with doctors who wrote me off, with all the time I waste trying to find the right specialist, only to be slapped in the face by people saying stuff like, “DO YOU LIKE BEING IN PAIN? THEN GO GET ANOTHER ELECTROCOAGULATION SURGERY” or “I TOLD YOU ABOUT THIS PERSON A YEAR AGO, WHY DIDN’T YOU LISTEN TO ME”.

If I hadn’t read through my old blog entries, then I might not be so mad as I am right now at my husband. But the thing is, forgetting also destines one to repeat history. And this is recent history – the blog entry I’m referring to is from February – only seven months ago. We’re in a cycle, and it does no good to keep forgetting that the finances issue is a HUGE issue. I DID go to school this summer after my husband insisted that I go, and insisted that our tax return money would cover it. When the tax return money ran out towards the end of the summer and my husband had to foot $1,000 more of his own money, all hell broke loose. We’re still reeling financially and emotionally, and then I get told I must have another surgery ASAP.

Back on February 4, I said I could EITHER have surgery OR go to school because we don’t have enough money to do both. This was before our tax return. Once we got the tax return filed on February 20, my husband said I should go back to school, and I agreed. We both thought at that point that surgery could wait.

Who knew that surgery would be deemed necessary the same year? There was no way of knowing that.

But the same frustrations I expressed about our finances are still at the forefront of our relationship today. We did have that talk back in February, and he did say that he would support and help me and that he would stop being wishy-washy. The one point we did not cover was him also promising not to be grudging or angry when I need money. He never made that promise and his behaviour is still that of grudgingly handing over money when I need it.

Last Wednesday, when I got the surgery summons, I told my husband we needed to talk about finances and planning for the surgery. Friday night, we had that talk. Once again, we got into our modes. He wanted to pledge chivalrous yet ambiguous support for me during and after my surgery. I wanted to run the numbers. I broke out the calculator and my recent timecard and compared it to my earnings before summertime to get an estimate of money that could be saved between now and December, while telling my husband about bills and groceries and things that would need to be taken care of. He sat there, eyes glazed over, zoned out, then began playing a video game on his iPhone.

While running the numbers on my end, and noting his lack of engagement after he initiated the talk, I kept working but did not look at him as I spoke, telling him, “Here’s what I need for you to be doing. I need you to go through your bills and expenses and the last three months of the grocery bills, and tell me roughly how much money you have at the end of the month each month, so that I know what you have to contribute towards the surgery, since you said you would in fact take care of me during and after surgery.”

He stopped playing his game, stared at me for a moment while I continued to work without looking at him. Then he got up in a huff and stomped off to the computer room to run his numbers in angry silence.

And this is how it always goes. He’s all talk and then when it comes time for action, he gets his panties in a twist.

He DID do his numbers and we DID compare things.

The end result of my own assessment was that I cannot afford to save money for surgery to cover the co-pay (up to $1,400 out of pocket) AND any post-op care, AND bills that will still be coming due after surgery while I’ve been off work without a paycheck.

My husband’s assessment showed that he was left with just over $200/mo out of his paycheck, if he had to continue to cover all of the groceries, cat maintenance, and all of my bills post op.
I asked if my husband could set aside money out of his paycheck every payday from now until mid-December in order to have that padding available – to cover all the expenses for up to 2 months post-op. He shared that he has about $1,476 left over after bills are paid each month. I asked if he could carve out $400/mo from now until mid-December (leaving him with $1,076 total in the bank each month, but saving $1,200 to cover me), since my bills due on top of everything else are about $316/mo ($632 if he had to cover me for 2 months).
He replied that he could logically swing it, but would feel uncomfortable doing so, in case other emergency expenses came up. He said it would be cutting it too close.
The end result of his assessment is that he cannot afford to save money now to cover me post-op in December.

This pushes my surgery out to either spring break, which is one week optional work in March, 2011 (holiday daycare week), or sometime in the summer 2011, which is a fixed amount each employee can work during the summer, anyway, due to low enrollment.

At first, I was silently very angry with my husband’s refusal to save $400/mo from now until December. But I calmed down and realised that yes, $1,076 really is in fact in the red for two people, should any tiny emergency crop up. It’s just not doable, and I have to accept that.

After doing our assessments on Friday night, I did not feel any better about how we both emotionally handle things related to finances. I still do not trust that my husband will make good on his word to be there for me. It’s all on me to save the money towards the surgery co-pay and taking care of myself after surgery. I have to start saving now.
When we got married, we agreed to keep finances separate. We only got the joint account to pool money for the honeymoon. That was the only reason we got that account. And even then it didn’t really work out so well – I still put a bunch of shit on my credit cards, and used my money, and he still used his money. The fact remains that he is very guarded over the ginormous amount of money he makes in a year, and is resentful that he has to foot all of the rent and groceries. He makes roughly sixty-five thousand dollars more than me each year, and so when he has to split his income in two to support both of us, he gets pissy.
I make sixty-five thousand dollars less than him each year, so when I easily run out of money and need something, I get all pissy when he won’t just provide the money. I don’t look at it as a spoiled princess or entitled bitch thing. I look at it as a fracking charity thing.

Another thing I found out from my assessment is that missing two or three days of work each month loses me roughly $4,000 every year at the current pay rate. At my highest earnings in the dotcom days, I was losing up to $7,200/year of my paycheck because of missing work due to endometriosis. I posted a study about this on the main Living With Endometriosis site back in April, 2010. My personal cost is much higher, but I don’t know if their costs were net pay or gross pay. My assessment was gross pay.

I still feel the same as I did back in February: “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 am a can of mystery meat

I had it in my head that I have been experiencing nausea for the past month, even when I am not on my menstrual cycle, and that this must somehow be a new development.

Then I got word of the MRI results, saying I have cysts in my liver, kidney, cervix, and I have an endometrioma on my left ovary. I thought for sure the nausea had to be tied to one or more of those, but fixated on the endometrioma, because I recalled being pretty nauseated in the past when dealing with ‘regular’ ovarian cysts.

So yesterday I’d had enough of the nausea – it got so debilitating that I could not read my homework anymore. Friends on facebook asked if I’d contacted a doctor about this. Uh..no, I haven’t, heh! So I did.

My local doctor’s office – the on-call doctor of the day – called me back after 9pm last night, and I asked him if he could prescribe Cesamet, which I heard about through a Canadian endometriosis buddy a couple of years ago.
He said no, his office doesn’t touch the stuff. He went on to say he did not think my nausea is being caused by the endometrioma or the liver or kidney cysts. He said he has never heard of nausea being brought on by an ovarian cyst, and says he’s been practicing medicine for many years. He was condescending and talked down to me and was authoritative, and suggested something else is going on that I should get checked out for. He said I should come in for a checkup. In the meantime, he suggested I try taking peppermint tea or ginger tea for the nausea. I told him I’ve already done that to no avail. He then sent in a prescription for Phenergan. I looked it up and decided the side effects were once again worse than the problem, and so I will not chance taking the stuff. Remember that I am the person who hallucinates on Tagamet and could only handle 6-8mg of any SSRI medication at a time without severe side effects, and over the long term, I am *still* trying to recover from the two years I spent on SSRIs.

ANYWAY, so Phenergan is out.

This morning, one of my gynecologist’s minions assistants called me back, and I talked to him about the nausea. He was MUCH more diplomatic than the local asshat doctor. He said that their office does not have experience with prescribing Cesamet, and so he unfortunately could not help me with that. He also said it seemed unusual that I should be experiencing nausea with an ovarian cyst. He told me that he felt the endometrioma was way too small to be causing problems for me at this stage. He also doubted that the liver and kidney cysts could be stirring up nausea, but he suggested I speak with a gastroenterologist if I am still concerned. I thanked him for his time and we hung up.

Gastroenterology, eh? Well I’ve already ordered the liver and kidney detox supplements, and they’re on their way. So I’ll try that first, before hiring on yet another specialist.

Today, just to say I have covered all my bases, I contacted one of the two Cannabis dispensaries I am registered with under Prop 215, but they would not speak to me by phone, and said I’d have to visit in person or send an email. So I emailed both dispensaries to ask if they carry or can get Cesamet. No one is available to take me to the dispensaries today, and I’m in no shape to go out on my own.

I do not have confidence that the dispensaries can get Cesamet.

This leaves me wondering about the nausea. So I searched my own blog, and was frustrated to find that I had posted about this 98 times throughout the life of my journal! I went back and made a category for this one keyword, to make it easier for me to search next time. Ugh.

So what does this mean?

This means that the nausea is nothing to be alarmed by, whether it’s on cycle or off. I usually had this only on cycle, but apparently having nausea between cycles – it’s just part of living with endometriosis.

Go me.

I am truly frustrated and feeling at my wits’ end by having to continue residing in this meatsack. I feel I am reaching the bottom of the emotional pit this month. I hope that means that after today, the pain and bleeding will ease up, and I will be able to emerge once again from the Underworld.

Each month that I must pass through the Underworld, I grow weary of ever making it back out alive again. I fear that one of these days, I’m just going to give up and make it my permanent home out of sheer exhaustion with having to battle this illness.

Current treatments

I remembered that which I’d forgotten in last night’s blog entry – herbal tea.

My acupuncturist had prepared an herbal tea for me to take as part of my treatment through her. I had stopped taking it some months back because I suspected it was making my dermatitis worse. One of the ways my food allergies manifests is through atopic dermatitis – specifically on my left thumb. At my last visit with the acupuncturist, I said I wanted to try the tea again. I said this because I’m freaked the hell out over the endometrioma on my left ovary, and I don’t want the sucker to grow any bigger. I’m willing to take on as many new therapies and treatments as possible – like a hammer to the problem – if it will help.

A dermatologist I saw a year or two ago told me it’s impossible for wheat or any food to cause or agitate the dermatitis on my thumb. He said it is caused by my skin reacting to direct touching of detergents and other chemicals. My argument stands to this day that it is ALSO caused by ingesting allergenic food and drink. I fired that guy after the first visit – I’ve had enough of doctors telling me what they think is going on in my body, when I have repeatedly proven them incorrect. Remember the doctor who wrote off my endometriosis entirely and said I just have IBS? Remember the surgeon who said I don’t have endometriosis – that I only have dysmenorrhea, and so she refused to give me a laparoscopy? Remember all the doctors for years who fought against me asking for antibiotics right off the bat because they didn’t believe I can have an immediate sinus infection? Remember the E.R. doctor who said and wrote in my chart that the only cause for my acute pancreatitis at the age of 21 was because I must be an alcoholic? (the nurse told me the pancreatitis was from doctors giving me Cipro for repeat sinus infections every month for a year). Remember the humiliating experience of having to submit to STD testing because the doctor was sure my husband was running around on me, since that’s the ONLY way I can POSSIBLY have gotten cervicitis? She even tried to counsel me right there in the office about my relationship!!!!
So ah, yeah. Sorry for the lashing out. Guess I’m not ready to forgive people/doctors, yet.

Back to my thumb:
Within 24 hours of starting the tea again, my left thumb, which had been doing well, split open and started bleeding again. It has to remain fully bandaged when it does this, and looks like I have a broken thumb or something.
And of course, I’m being stubborn and still drinking the tea, because I’m sitting here thinking, “well maybe it’s the dish soap I used – it contains orange oil and I’m allergic to oranges.”
I’m still drinking the tea because yesterday my cramps were minimal, and I want to try to keep it that way by any means necessary – even at the expense of my poor little left thumb.

My current treatment plan:

  • 1/4 teaspoon endometriosis blend tea in a cup of hot water, 2-3x/day
  • My regimen of vitamins and supplements
  • Acupuncture every 2 weeks (I want to increase this to every week)
  • Massage when I can (I want to increase this to every week)
  • Elimination of refined sugar
  • Elimination of all dairy
  • Elimination of caffeine
  • Resumed elimination of alcohol (I’ve had some to drink every now and then since May 2010 but I’ve stopped again because I don’t like how it makes me feel in the moment anymore)
  • Continued adherence to No Fly List (I’m still failing on stuff like butter, salt and chocolate)
  • Continue with trusted pain medicine cocktail (Tylenol 3 and Ibuprofen)
  • Continue with consciousness to posture, correcting gait, and administering large hip circles and yoga pose.
  • Keep getting on my bicycle as often as possible.

 

And yes, I know, I need to get back into the gym, and I need to ride my bike farther than just running errands or going to/from work.

My current surgeon will not give me another laparoscopy until the pain becomes constant and unbearable. She wants to take a wait and see approach to the endometrioma. She says if she goes in and carves the sucker out, another one will just grow back in its place. She knows I don’t want to remove my ovaries because I don’t want to go on Hormone Replacement Therapy, because synthetic hormones make me suicidal (tried and proven twice!).

Pet Peeves

I know people need to make a living. I know there’s a food chain, even and especially where it comes to health care and caregiving.

Knowing this about people doesn’t mean I like or condone their actions.

Ever since being officially diagnosed with endometriosis, I have been seeking out alternative health remedies for my illness, because the surgery did not provide pain relief.

The biggest pet peeve I have regards what I call information hoarders.

Here we are, women suffering horribly with an incurable, debilitating disease that we were born with, and all we want is to find out what we can do to ease our symptoms.

Someone comes along and says, “I have found the secret to what works best and my pain is GONE! Click here to BUY my online book for just $23.95!” No snippet of remedies or anything, just trust this individual and buy the book.

Others come along and hawk their Nattokinase and Lycopene supplements, insisting that for only 49.95 you can CURE endometriosis!
Well get this, buddy, FIRST OF ALL, there is no cure for endometriosis. SECOND OF ALL, I am allergic to tomatoes and nightshades! Take your Lycopene and shove it!!

And yet others will come to you as well meaning, caring, alternative health practitioners. They promise to ease your pain, but really they are promising to rob you blind!
Take for example the “Clear Passage” people – they are using half-assed Chi Nei Tsang and charging people $5,000 to travel to them for a week of treatments! The cost of travel is NOT included in their fee!
I got their brochure awhile back because they’d refused to list any prices on their website. Once I saw the pricing in the brochure, I saw red.

And now, the whole point of today’s rant – it had to have a prehistory to lead up to this, but this week’s “winner” for bringing out the rant is the Qigong/Chi Nei Tsang practitioner who got back to me the other day and sounded urgent for me to come back in for treatments again.

What I didn’t tell you was that she wanted to charge me three times what she was charging me previously. She says she’s changed her sales up and now the detox treatment has to come bundled with two Chi Nei Tsang touch treatments, for a total of $325.

I talked with my husband about it. We looked at my bank account and looked at our joint account (which is supposed to be for my schooling). We couldn’t find the extra money for the treatment. My husband said he didn’t feel comfortable ponying that amount of money to this lady, when he doesn’t believe her previous treatments have helped me. I argued the point, saying I hadn’t seen her often enough to know for sure, and with that, should I also stop seeing the acupuncturist, because I sure as shit haven’t experienced pain relief from that, yet. Or should I increase the visits to these people and see how it goes for a few months?
My husband remains doubtful that I will gain pain relief from these treatments. I called the Chi Nei Tsang lady back and left a message letting her know I could not do the package deal, sorry.
I told my husband however that I refuse to stop seeing the acupuncturist, and that she and I have an open dialogue and are trying to figure out the best continued treatment for me, AND she is keeping her pricing affordable to my situation.

The Chi Nei Tsang lady called me back and offered her condolences, and said that if I still wanted to come see her in the future, she could give a discount. She didn’t offer anything for the here and now. She didn’t offer to cut out the Chi Nei Tsang sessions and only give me the supplements for the detox diet. I began to suspect her so-called caring and sincerity.

So I decided to find a way around the Chi Nei Tsang lady’s road block. She’s previously given me the ingredients list of the detox diet, now all I have to do is hunt the ingredients down, right?
I found a few old bottles of supplemental pills that still have not reached their expiration date. Looks like I could buy some vegetarian pill capsules and fill them with clove for example, like what I’m seeing in the bottles.

I examined the bottles closely.

Well look at that! I thought I’d examined the bottles before and hadn’t seen a web address, but this time around, I found a web address! I think I’ll check it out!

And lo and behold, the entire detox ingredients list is to be found, supplemental pills and bulk tea treatments and all – FOR HALF THE PRICE I WAS BEING CHARGED – on a website called Self Health Resource Center (http://www.shrc.net/).

Again, ladies and gentlemen, my pet peeve. Here I am, trying to get honest advice and treatment for my debilitating, chronic pain, and instead of being told to check out a website called Self Health Resource Center, where I can buy some supplements, I am instead given the idea that she works with some supplier somewhere only for practitioners such as herself, and that I can’t get this on my own, and more to the point, she blatantly marks up her prices to make a profit off of MY suffering!!!

I AM NOT OKAY WITH THAT!

Now, here’s a thing…
That website is also known as “The Original Dr. Hulda Clark Products Manufacturer.”

Who the hell is Dr. Hulda Clark?

Apparently she was a quack and a charlatan!

You can read about her here, here, and here.

GAAAAHHHH!!!!

Why is my Chi Nei Tsang practitioner, who supposedly is schooled through the Chi Nei Tsang Institute (http://www.chineitsang.com/cnti/Welcome.html), buying products from another school of medicine, so to speak?

I looked up the person who founded and runs the Chi Nei Tsang Institute – his name is Gilles Marin. I have always taken issue with this Gilles guy, because in the detox diet instructions, there is a recipe for 7 Vegetable Soup, where it says, “This is an old family recipe that has been passed down to Gilles’ grandmother from her grandmother who was the witch-doctor of her native village from Southern Provence in France.”

Riiiiggghhhht. I wanna see a genealogical workup on this guy.

Instead, I will look him up on the Internet.
Gilles Marin has written a book called Healing From Within With Chi Nei Tsang.
This book cites “The Cure for All Diseases” by guess who?

Hulda Clark.

wonderful.

I was also curious as to whether Gilles Marin shares my Chi Nei Tsang practitioner’s idea that I have manifested my own illness – that it’s all my fault that I have endometriosis and other autoimmune disease. I wanted to know if she learned this from him or if she thinks this independently of him.

According to an article on Open Exchange, Gilles Marin is quoted as saying, “The spirit revolts in an attempt to bring us to our senses, in a fit of rage or act of rebellion, sometimes without a cause or apparent rational meaning. This rebellion can manifest in our behavior but also as physical symptoms and illnesses. From this perspective most chronic illnesses are an attempt from the spiritual body to make us pay attention, heal, and change. These illnesses are healthy reactions to unhealthy situations. Without such reactions from our spirit, we fall off the way (Tao) that serves our life purpose. Enthusiasm disappears. When we live a dispassionate life, there is only senseless depression with its inner message saying that since we are not enjoying life, we don’t deserve to live!

So let me get this straight. I began having chronic urinary tract infections from early childhood. I started my period late, at the age of 14, and from the very first year, I was in debilitating pain, often vomiting from the pain. But it is I who brought this upon myself? I caused endometriosis?

Gilles Marin also talks on the Daily Om about negative emotions creating disease. Again my argument stands – my illnesses came to me in utero, assholes.

So now here I sit, knowingly just having spent money last night on the Dr. Hulda Clark website to obtain the same supplements for far cheaper than my Chi Nei Tsang practitioner was charging me for them, and I have to wonder:

When I went on the detox diet in November, 2008 – did my 4cm ovarian cyst shrink back to 1.6cm within a month because I was taking those supplements, or because my body just naturally began reabsorbing the cyst?

I can’t really do a control test – I can go through another month of the supplement detox diet, and then ask for another ultrasound in August to see if my ovarian endometrioma has gotten any bigger, but the thing is, an endometrioma on the ovary is NOT a regular ovarian cyst. It’s a mass that doesn’t reabsorb.
But it can’t hurt to see if the growth is staved, right? My GYN and my primary care doctor both say there’s nothing I can do about the endometrioma but watch it to see if it gets any bigger.
It grew .5cm in a 36 day period. Gods knows how much bigger it’s grown since the MRI on May 27th.
Once it gets to 5cm, I need to go get a cancer test. Which will of course come out flagged, because I have endometriosis, which always sets off a flag on the CA 125 test.

My choices are:

  1. Sit back and wait (i.e. do nothing)
  2. Modify my diet again NOW
  3. Start the detox supplement diet in addition to modifying my diet.

 

I am going to choose #2 and #3.

And I’m also going to practice calming the hell down and forgiving all these damned charlatans out there for using me and abusing me.

Hind sight

I’ve been going back through the past year of my endo blog in order to get as much detail as possible into MyMonthlyCycles.com, an online symptom tracking tool which will print out nifty data and charts for me to take to my new GYN. My second appointment with her is on June 23, and we’ll go over the MRI results and talk about my treatment options.

In going back through my blog, I found the following, which made me cringe:

“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.” – April 16, 2009

Earlier this year, I was feeling slighted by someone on the web who admonished me for not seeing a reproductive endocrinologist yet. I wrote, “I’d tried in January and again in April 2009 (last year) to see an endocrinologist. I forget why the appointments fell through.” – January 25, 2010.

When I finally did get in to see a reproductive endocrinologist (in San Francisco) in April, 2010, a friend wrote me to say, “I told you last year you should go see that doctor!”

Of course, the mail conversation we’d had about our doctors was in a shell-based email account that dreamhost was in the process of screwing me out of, and I’d lost my inbox, containing the past year’s worth of email, including the above doctor conversation.

I did see the gynecological oncologist like I said I would – I saw her in August, 2009. I don’t like her personality, her treatment of me on that visit, or her choices for me to consider, so I will not be seeing her again.

I am acknowledging that the delay of a year in getting to a reproductive endocrinologist was caused by me.

It was initially caused out of fear of losing a newly acquired job.

It was secondarily caused by me wanting to see a specialist in the East or South Bay rather than having to cross the Bay Bridge and navigate San Francisco. At this point I tried to see Dr. Adamson and then Dr. Cook, and was told by Dr. Adamson’s office that he’s only treating endometriosis patients who also want to get pregnant. I was told by Dr. Cook’s office that I have to pay out of pocket for all visits, because they’re too good to deal with insurance companies. This of course delayed me further, until I went back to my insurance book and went down the list of reproductive endocrinologists (R.E.) there, and accidentally stumbled upon the one my friend wanted me to see a year earlier.

I had been saying I didn’t know why it took so long to get in to see an R.E., so now I’m admitting it was because of myself.

Mind you, getting in to see an R.E. even a year later than stated goal is better than not getting in at all. I want people to know that even with seeing an R.E., I could continue to live with this debilitating pain for another year, five years, twenty years, etc.

People act like I’ve wasted my time and went through unnecessary pain for a year longer than I should have. People make it out like I’m some dumb hick who doesn’t know better for her own self.

The reality is that the R.E. I saw in April 2010 might not be able to help me, either.

I saw an R.E., okay?

She (Dr. Giudice) offered me gabapentin, which everyone I talk to who has taken it or who has a degree to study it (note: three friends and one biopsychologist), plus many more acquaintances on the Internet endometriosis forums who have been on the stuff…. ALL SAY it turns you into a friggin zombie. And there’s also the fact that it makes you twice than the ‘normal’ population to become suicidal. Which, I dunno if you’ve been following along at home, but I’m already diagnosed Major Depressive and I wrestle with suicidal ideation as par for the course in battling chronic pain for the last 25 years.

Dr. Giudice also talked to me about another surgery, understands that I will not undertake further hormonal treatments because I became suicidal on the last two (yasmin and loestrin), and from there she ordered an intravaginal ultrasound and an MRI to have a clearer look inside of me. She also told me point blank that my refusal to try out further hormonal treatments and my hesitancy at trying gabapentin limits the scope of what she can do for me.

Not getting to Dr. Giudice a year earlier has not shaved off a year of my life expectancy.

I am defensive because of the person back in January who gave me such shit. I am defensive because of all the doctors who continually tell me to Just Try It, despite me being right in every instance that shit won’t work out for me, because my body is so sensitive to “medications”.

I was originally mad at myself when I read my old journal entry today. Now I’m back to just being mad and frustrated in general.

Endometriosis sucks. Immune Deficiency sucks. The Industrial Revolution and Automation and the discovery of how to create Plastics and Chemicals sucks. The 20th century ruined my life. Read Silent Spring, by Rachel Carson. I’ll be glad to leave this poisoned planet when the time comes, anyway. Stupid people for killing the planet. Stupid humans.

The Qigong practitioner is fired.

I was just entering phone numbers into my hand-me-down iPhone, 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.

Round 2 of Medical Marijuana

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:

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.

Still trying to find a new GYN/surgeon

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.

More and more, I just can’t keep up appearances

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.