I Will Not Suffer In Silence

I missed work on both Monday and Tuesday due to george. On Monday, my birthday, I had not pooped in 3 days, so I had extra misery on that end. Tired of that, I took a vegetarian laxative (Perdiem) which someone else with Endo had recommended to me a few years ago to help with all the constipation that comes with the pain meds.

I made it out to the doctor for an emergency visit, where I nominated a new member of the staff as my official doctor – no more of this “anyone in the office who is available” crap – I need someone who knows my situation first hand and in depth.
She – Dr. Fisher – said she’s up for the job. She wrote me an excuse note for school work, to return by Wednesday.
It was at the doctor’s office that the laxative kicked in, but in a bad way. I got sudden horrid intestinal cramping – the kind that I get when I’ve eaten food with yeast (baked goods). This of course began happening while I was also having pelvic/uterine pain due to george.
I made it home and sat on the toilet and cried, clutching the wall and shuddering from the pain – the intestinal pain further set off the uterine pain and well, it was just horrible. I thought I’d puke from the pain. Glad I didn’t.

Screw laxatives, even the vegetarian kind which purport to be gentler – I’ll stick to apples, greens and lots of water when I need to poop.

By the end of the day Tuesday, I felt much better. George is still tapering off today – very light spotting yesterday and today.

That’s it til next month…

Today I sent off a letter to my surgeon, asking for an explanation as to why the endometriotic implant was not excised. Stay tuned…

Events I missed this month due to being bedridden:

Saturday, September 15, 2007:

• 2 birthday parties
• participating as an extra in a film a friend is making
• New Wave City (an 80’s dance night)

Sunday, September 16, 2007:

• another birthday thingie – gelato crawl instead of pub crawl!

Today I’m calling in sick to work because I’m still a bleedy painful mess of do0m.

Oh and … today is my birthday. :(

George showed up yesterday on time. I thought for sure he was a day early but looking at the calendar… nope, he’s totally on time.

I did pretty well this month, pain-wise, leading up to george.

I had a couple instances of minor uterine pain during the week of the 9th, but nothing like last month’s pre-george pain.
Then on Thursday, September 13th I started getting intermittent uterine pain. It started out light, then by the end of the day was moderate pinching pain. I made an appointment to see the local doctor, and told them I need to be seen every month for this. I told them I have a stage III disease and that my work is still trying to fire me for it. I have an appointment on the 18th.
The next day, Friday September 14th, provided more of the same – it started out light and by late afternoon was moderate.

I had become very depressed by Friday again – about this whole disease, about my social alcoholism, about why I continue to go back to that goddamned job every day. I’ve been looking for work but I’ve been too afraid to apply to jobs outside of the tech industry because I don’t know how to tailor my resume appropriately, despite having two really good resume books to work with for this.
There’s also very few jobs out there that I’d WANT to take at this stage in my life. Truth be told, I just don’t want to work anymore at all, and I don’t currently care what impact it has on me.

On Saturday, September 15, I awoke at 6am and I knew george was here. I went into the bathroom and turned on the light so I could see for myself, and sure enough, there he was. I put on a pad and went back to bed.
I got up around 10am and became worried that the pain would start ramping up. I ate a quick breakfast, finished the journal entry previous to this one (which took seven days to write because of lack of time), and headed out to the bank and two stores. I found the finishing touch for something I’ve been putting together for friends, came home, assembled it, and was all set to head back out to the postal/shipping stores when the pain really set in.

I thought it was just me sugar crashing at first. I’d eaten a protein bar while I was out at the stores. But then my legs got shakey. For me, when my legs get shakey during my period, it’s a sign that really bad george pain is on the way. And that was certainly true. Within an hour, I had very bad uterine pain – so bad that the first Tylenol3 didn’t cut it, and I had to take a second pill.
This of course ensured that I’d be down for the day, sleeping. I just had to accept that my present to my friends will be delayed yet another week. Good thing they aren’t expecting the present.

The pain refused to abate for most of the day yesterday. At one point, totally stoned, I got out my extra heating pad (my heating pads are washcloths sewn into rectangular bags which old a pound of rice, each), filled it with rice, sewed up the top, and put it in the microwave so I could have not one but TWO rice pads on me – one on my pelvis and one on my lower back. Then I went back to bed and finally the pain abated for awhile.

The pain started up again after dinner, though. Oh glorious dinner! My man brought me pad thai for dinner. How I love that man of mine! We watched MST3K while we ate, and then I cozied up next to him. I was still quite sleepy from the meds, because I’d taken an Ibuprofen 600 before dinner. However, the pain ramped up again after dinner so I took my third Tylenol3 for the day, and got back into bed.

Another thing I found out recently (the same day my gallstones acted up) is that I have Deep Endo.

I’d read back on August 21st in The Endometriosis Sourcebook by Mary Lou Ballweg that

Several other researches have found depth of disease to be important. Belgian researcher Freddy Cornillie and co-workers found deeply infiltrating endometriosis (penetrating more than five millimeters [0.5 centimeters]) to be strongly related to pelvic pain. In a related prospective study, Philippe Koninckx found depth of infiltration to be the single most important factor in pelvic pain.
Association advisor David Olive summarizes these findings: “It seems that the anatomic location and the depth of penetration of endometriosis lesions are the critical factors in determining pain – that is, very superficial lesions tend not to produce much pain unless they are in a crucial anatomic location. Deep, penetrating lesions seem to produce a lot of pain almost no matter where they are located, but if they are at a crucial location, the result can be excruciating pain.”
As readers will appreciate, these are important findings for surgeons – and for women with endometriosis who choose surgery to relieve pain. Dr. Olive continues: “Running a laser beam or electrical current over the top of the lesions isn’t the way to go, as far as we know, because the depth of the lesions does seem to be a factor in causing pain. Surgical treatment requires excision or destruction of the lesion to its full depth.”
Deeply infiltrating disease seems to be found more often in certain parts of the pelvis, particularly the cul-de-sac, the uterosacral ligaments, and the uterovesical fold (between the uterus and the bladder). Some forms of deeply infiltrating disease may be more palpable (felt by touch) than visible, and these may be missed easily at laparoscopy. Endometrial lesions in the rectovaginal septum (the membrane separating the vagina and the rectum) may be very difficult to locate through the laparoscope and can perhaps be palpated only during menstruation. -pg. 38

After reading that, I wondered, if the reason why I still have pain after a laparoscopic surgery is perhaps because I have Deep Endometriosis? So I called up my surgeon the next day and ordered my surgery report to be sent to me.
I got the report and skimmed it and set it down to read in more detail when I had more time to delve into further research.

On September 1st, I woke up with gallbladder pain AND pelvic pain. The pelvic pain receded much faster than the gallbladder pain, which scared me and took up all of my energy that day.
However, that morning I decided to take time to read through my surgery report carefully.

Of particular note in the report was the following (bold text is mine):

She was noted to have significant adhesions of the patient’s left ovary to the posterior uterus and the left pelvic sidewall. There was a small, approximately 1-cm endometriotic implant on the right aspect of the lower uterine segment near the bladder reflection.
…with a combination of blunt and hydrodissection, the left ovary was carefully dissected away from the posterior uterus. In addition, we took down the adhesion from the right ovary to the pelvic sidewall with sharp dissection. The peritoneal edge was noted to be slightly oozy following this takedown, and we cauterized the tissue with the Harmonic ball…the Harmonic ball was also used to cauterize the superficial surface of the left ovary which was noted to have a small amount of bleeding. In addition, it was also used to ensure adequate hemostasis on the posterior surface of the uterus. Finally, the small endometriotic implant on the right aspect of the lower uterine segment was caterized with the Harmonic ball, and all of our dissection sites were noted to be hemostatic.

So I have a 1cm implant of Endometriosis, which by definition of the Endometriosis Association qualifies as Deep Endometriosis, and my surgeon simply tried to cauterize the SURFACE of this implant??!?! WHY DID SHE THINK THIS WOULD HELP ME!?!?
Specifically noted by one of the Endometriosis Association’s surgical advisors, David Olive, is “Running a laser beam or electrical current over the top of the lesions isn’t the way to go, as far as we know, because the depth of the lesions does seem to be a factor in causing pain. Surgical treatment requires excision or destruction of the lesion to its full depth“.

After reading my surgery report, I felt SO sad…hurt…betrayed. Here I thought I’d found a doctor who could really help me, and it seemed like she hadn’t kept up on her Endometriosis studies. I became angry. As a matter of fact, I’ve been in an angry and depressed funk ever since reading that report after having read The Endometriosis Sourcebook by Mary Lou Ballweg.

Alas, I wished to journal about all of this on August 9th, but I ran out of time because of housecleaning and prepping to go back to work and whathaveyou. Just two days earlier, at work, I’d been told by the director of support that I’d been passed over for a job interview by the Director’s Superior-NotCEObutAssKissingRearAdmiral because I’d been TARDY too many times in one week. On the very day and time of my interview, NotCEObutAssKissingRearAdmiral stayed over in another meeting and refused to come get me after his powwow. He never emailed me. He never talked to me. Neither did the director, til I finally cornered him Friday after work and he told me.

So anyway, Sunday I was already still fuming about having to go back to work, when I got even more pissed off about the surgery report.
And then the next day I was launched back into the work week.
Monday went horribly. I can’t even remember what was so horrible at work, now. All I know is that I was on the verge of being suicidal by the time I had to commute home.

I got home from work and immediately set to drinking. I believe I had FOUR rum drinks before suddenly deciding it would be a GREAT idea to go to the local Monday night goth club. I convinced my man to take me. We picked up another friend along the way, who fed me a shot of liquor as soon as I entered his house. When we got to the club, I immediately bought ANOTHER drink – a chambord and vodka, made with thee worst bottom shelf variety of vodka EVAR.

I don’t remember much of Monday night, but I’m told I laughed a lot, and tried to look up my friend’s skirt…I’m also told I vanished a couple of times, and my man wonders if I had puked, because my eye makeup was askew. I have no memory of any of this.
This is how I get when I drink. I black out.

I woke up with THEE worst hangover on Tuesday, but knew I still had to go into work. I can’t afford to take one of my paid days off for a hangover, when george is due in the next five days. Tuesday was a pile of suck for me as I slogged through the workday, wanting to puke. I barely ate anything.
On the way home from work, I went to Boston Market fast food joint, got a side-dish meal of mushy foods (mashed potatoes, creamed spinach, and squash casserole), and went home. I ate dinner and went directly to bed.
I inadvertently left my keys in the door, according to my man.

When I woke up Wednesday, I felt better, and became humble and embarrassed about what I’d done. I looked and acted mess at the nightclub in front of alot of old aquaintances. I feel like Edina Monsoon from Absolutely Fabulous, all over again. I’m just not a sophisticated drunk in the least, in the least.

So my pledged three months of sobriety lasted a whopping 23-days.
Hail Eris, goddess of Discord.

That bitch.

I’m not an every day alcoholic, mind you. I drink socially when I’m at a club or out with friends, but when I do drink, I always drink til very drunk. I was in the midst of clearing out my body and mind for a few months when work harrassment and the surgery report got to be too much for me to handle. I started feeling like nothing I do in life will ever help my pain, so why bother reeling in bad food and drink habits? Why does it matter? Who cares if having Endometriosis means I have a higher risk for cancer, and drinking alcohol can accelerate that? Who cares?

It was in that mindset that I fell, as it were.

Anyway, my next step is to stop drinking again and also to be diplomatic with my surgeon, and find out WHY she chose to cauterize instead of dig the damned implant out – was it because she was afraid to damage my bladder? I need to be nice and patient and get her side of the story before deciding whether or not to bring out the verbal knives.

January 18, 2009 Edit: I can’t find it anywhere in my diary but I wanted to note that my surgeon DID call me back, and she told me that the endo was not 1cm DEEP – it was 1cm LONG. She insisted that she cauterized it because it was not deep enough to warrant digging out, but noted that she was afraid of puncturing my bladder should she have tried cutting the endo out in that area.
The fact that I still have as debilitating pain today as I did before the laparoscopy to me demonstrates that she did NOT get all of the endometriosis out.

I’ve been meaning to update you about something my friend told me about last month. It’s called the Petal Study. Quoted from their website, “The purpose of the research study is to evaluate the safety and effectiveness of an investigational medication for the management of pelvic pain associated with endometriosis”.

I filled out a questionnaire and qualified for the study, and was really excited about what this could mean for me. A representative phoned me and went over the details. The “investigational medication” is a “lupron-based” injection that must be taken regularly. They insist it’s better than Lupron itself, but note that side effects are firstly hot flashes and secondly depression, same as with all other birth control pills and Hormonal treatments.

This “lupron-based” medication is known as a GnRH agonist, which has already been used to treat women with Endometriosis. It’s just that this would be added to the list of other GnRH agonists out there if approved by the FDA.

What GnRH agonists do is they eliminate estrogen from the body. I told the researcher that without estrogen in the body, this produces the hot flashes and she said “yeah the hot flashes are a big problem so far”. I asked if there’d be any “add-back therapy” such as a synthetic estrogen or a progestogen of some sort, and she said NO.

That’s strike one, because, and I asked and had the researcher confirm, the side effects of GnRH agonists are bone loss/osteoporosis, hot flashes, insomnia, reduced sex drive/vaginal dryness, headaches, muscle cramps, severe acne, and depression. My surgeon tried to get me to go on a GnRH agonist nasal spray after the Yasmin synthetic hormone therapy nearly killed me. I told her no friggin way.

Strike two is a branch of strike one: depression. I’m diagnosed Major Depressive and was at one time on anti-depressant and anti-anxiety medication to treat my condition. I’ve had depression since about age ten. I told the researcher about this and she said no problem, all I have to do is get on anti-depressants while enrolled in the study.

I told the researcher that the whole reason I got off the anti-depressants was because after trying several of them over a two year period, they all had really negative side effects, most notably muscle cramps and joint pain, to the extent that I had to go to physical therapy on a weekly basis while on the anti-depressants.
The researcher said no problem, all I have to do is take Ibuprofen regularly for the muscle cramps that result from taking the anti-depressants that I have to take to combat the side effects of the “lupron-based investigational medication”.
That’s strike three.

I thanked the researcher at that point for her time and declined to participate in the study.

This sent me into a ranty tizzy, and I thank my man for listening to said rant AND agreeing with all the points that I made against participating in the Petal Study. There are so few people on my side who truly have seen and empathise with what I go through – those who do not have the disease themselves but who have educated themselves about the disease on my behalf, or who take me at face value on this disease. I can count these close people only on one hand. Not even my own family is amongst these people.

So, my hopes about this study were actually dashed as soon as the researcher uttered the words “lupron-based”. I’ve witnessed recently what a friend goes through on a “lupron-based” injection – she turns beet red and says she feels like her body is on fire – this can last for over 20 minutes at a time, and she has to strip down to a tank top and shorts no matter where she is. She has electric fans blowing on her all the time at work. But she doesn’t have the depression/suicidal side effect like I get.

My only options to treat this disease are more surgeries because the stuff grows back, continued vigilance on diet modification to eliminate foods which trigger pain or contribute to the pain, and continued use of pain medications to treat the pain, which offer up their own breed of side effects, most notably constipation and destruction over time of the lining of the stomach, intestines and bowels.

It’s been a couple or a few weeks since this phone call took place with the Petal Study researcher. I’d been meaning to sit down and write about what took place, but I’ve been depressed about that conversation, depressed about my job situation, and busy with stuff on the home and work front.
So I’m just now taking the time to catch up on that. My next journal entry will be a rant about the surgery issue.

So I did the horrible nasty gallstone flush last night, which consists of 2/3 cup of olive oil (slowly warmed to body temp in a pot) and 1/3 cup of fresh squeezed lemon juice (slowy stirred into the heated oil).

As I was sipping the concoction, it started to cool and therefore congeal, faster than I could drink the nasty stuff. I thought I might vomit, then had to remind myself that this was actually somewhat tastier than the DXM I used to take willingly and for recreation (read: a 4oz bottle of Vicks 44 cough syrup, to get high) years ago.

I had gotten through a third of the concoction when a fellow Cabal member whom I’d been corresponding with on IRC about the gallstone flush discovered an article. She had been considering doing the flush after all my talk about it, but decided to research it a bit further, first.
Now, this is what I normally do, so why didn’t I? The answer is that I’m paying a woman $150/month to do this research for me and present me with health counseling and advice. That woman gave me an article detailing the gallstone flush, approved by her.

However, what this fellow Cabal member, who is a graduate in cell & molecular biology from San Francisco State University, found, was an article by a doctor with UCSF credentials, which goes into detail as to why the olive oil/lemon juice remedy is bunk.

I was already over a third of the way into the nasty drink, so I braved it to the halfway point and dumped the rest, which was rapidly congealing, anyway, and I didn’t feel like re-warming the crap.

Thankfully, I didn’t puke.

I went to bed immediately and lay on my right side as instructed, and began to fume about the article I’d just read, and fume about my health counselor.

This is not the first time my health counselor has done this to me. The first time was right after I told her about all of my gluten issues, and she went and bought me a bag of oats to make for breakfast. Oats cross-react with wheat, (tried and tested for me) and if she was paying attention in her classes, she’d have known that.
She’s fresh out of a certificate program for health counseling – not even a credentialed 4-year university.

I took her on because 1) she’s my neighbor, which lends extreme convenience and 2) I was desperate for help.
With convenience there’s always a price. Here it is.

I’ve just finished a bowl of millet – also a gift from my health counselor. She’d given me a cup of millet to make porridge out of. It took getting used to the consistency but adding a banana and some vanilla rice milk helped a lot. I’m feeling a bit light headed but that’s likely because I’ve had no protein.

I really have to figure out how to do protein in the morning without eating eggs or meat, because of the gallstone issue. I can’t do the flax shake every day – I’ll get sick of it too quickly.

So far I have decided not to take any pain medication for this gallstone issue – since I’m not eating well, I feel it will only add to my troubles, as pain medications are known to cause stomach bleeds unless taken on a full stomach. That and I’ve been taking LOTS of pain medication steadily for the past 21 years for the endometriosis, so my g.i. tract is not exactly robust to begin with.

The pain from pancreatitis vs. gallstones is similar. It starts off feeling like a pulled muscle around the ribcage, and it hurts to breathe even tiny breaths, beause of the pressure.

With pancreatitis, the pain is centered above the bottom of the breast bone / solar plexus area. It feels like burning, like a torn muscle.

With gallstone inflammation, the pain is under the right ribcage. It too feels like burning, like a torn muscle. The pain then radiates to the lower back and to the shoulders, so you feel like you have two conditions going on – your back is going out AND you have this lovely torn muscle feeling under the ribcage.

As previously mentioned, the medical establishment LOVES to rip out gallbladders when this happens. It’s an expensive laparoscopic surgery.
Well, I’m not vomiting and I don’t have the chills and I’m not unconscious, so screw surgery.

Last night, I bought the following, all which are supposed to help, according to “Healing With Whole Foods”, by Paul Pitchford, which I got from my health counselor:

Green (granny smith) Apples
Raw Radishes
Horseradish
Pears
Lemons
Limes
Tumeric
Flax oil

Also recommended (and I already have it in the house) is chamomile tea – five cups per day.

Yesterday I drank fresh squeezed lemons and limes mixed into water with ice cubes. Mmmm, mmm good.
For dinner I had two apples, two mugs of chamomile tea, and a half a teaspoon of horseradish every ten minutes for an hour.

I woke up this morning and PRESTO! The pain was gone!

For a short while…then I got a different pain…lower…in the bladder region.
That’s good though! The stones are moving! And this pain, although it has me limping, is actually much more tolerable than the gallbladder pain under the ribcage. I have been highly functional today (although slow going), and I’ve cleaned the hell out of the house.

I’ve had two more apples today, a raw radish, and right now I’m eating mashed yams with garlic, tumeric, non-dairy-gluten-free butter and flax oil.

Joooyyyy….These are the best yams EVAR.

I’ve had two Ensure protein drinks in the last 24 hours as well – these are leftover from my endometriosis surgery back in February.

But other than that, I’m lacking in the protein and fatty food department, and so I’m quite light-headed at the moment. I eat fish and eggs and chicken every day, and sometimes red meat. So this lack of the meats has me feeling like I’m fasting.

Whooo boy fasting is a bit like tripping…

Wheeee…..

Tonight! I drink nasty 2/3 cup olive oil and 1/3 cup lemon juice concoction so I can poop out the stones tomorrow!

I knew you wanted to read that, really.

My life, ladies and gentlemen…. this is what happens when you live fast punk rock oi oi for too long.
Suddenly, you find yourself in your early to mid thirties with all the health problems of a geezer.

Not exactly the way I wanted to spend my three-day weekend, but there it is.

Remember back on August 19th, I mentioned that I’d had gallstones back in 1993?

Well, I saw my health counselor on August 21st, and we discussed a gallbladder cleanse after I explained my history and risks to her. She researched a cleanse and on August 30th, she sent me instructions for both a cleanse and a flush of the gallbladder.

I got paid on August 31st and planned to go to the grocery store today to get the items on the cleanse/flush list.

Well, this morning around 5am, I awoke to searing pain on the right side, underneath my rib cage. I had no idea what it was – was I developing breast cancer? The pain felt so deep. Was it torn muscles, and how would that have happened?
Hours earlier, around midnight, I laid on my back on the bed, legs hanging off the side of the bed at the knees, slowly stretching my back, because for the past couple of days, my shoulders and upper back have been hurting me again.

I contemplated waking my man and going to the hospital, but I didn’t want to go unless I was SURE it wasn’t a pulled muscle.

I finally got back to sleep and woke up around 9am, again in pain.

I got up and started scouring the web for information on what breast cancer feels like. I ruled out my breast cancer fear right away.

I then put down my fears for a bit and stopped searching online for clues as to the pain. The pain was intermittent all day. It’d be gone, then be mild, then it would be really bad for minutes on end, where I’d gasp, which made the pain worse, because it hurts to breathe, even with teeny tiny breaths. It was around noon when I really started to worry that I could be developing pancreatitis again. However, the pain is in a different place. With pancreatitis, the pain was centered above my solar plexus. This pain is on the right side.

It wasn’t until about 7pm that I started to panic from the pain. I was supposed to go meet my friends at their house to just hang out, but I called and told them I wasn’t feeling well.
I looked up images of human anatomy online to figure out what organs live under the rib cage, and that’s when everything came full circle – the organs on the right side are the liver and the gallbladder.

So now I know it – it’s official. I’m having a gallstone attack. Lovely.

I frantically researched the web for what foods to avoid for gallstone disease, and of course I know eggs are at the top of the list and of course I haven’t stopped eating eggs since I last spoke to my health counselor. I eat eggs nearly every morning for breakfast because that’s the best source of protein I found that tided me over til lunch and didn’t have me sugar crashing.
Alas, eggs are now fired for good.

At the top of the list for gallstone treatment on U.S. medical websites – LAPAROSCOPIC SURGERY.

Oh hell no, I’m not doing THAT again. That’s thousands of dollars I don’t have, fully insured or not.

I finally found some advice from around the web and culled together an emergency diet for tonight: horseradish, camomile tea, apples, and plenty of water.

I’ll continue to eat apples throughout the day tomorrow, and then drink the nasty gallbladder flush, which consists of 2/3 cup of olive oil and 1/3 cup of lemon juice. I was hoping my health counselor could find a much less repulsive recipe but that seems to be the best one out there.

In related news, I was talking with my man yesterday about the last time I drank alcohol. We think it was on or just before August 18th. It was on August 21st that I pledged to my health counselor that I would abstain from alcohol for three months AND do a gallbladder purge to see if that helped relieve my menstrual pain a bit. So it’s been roughly 14 days without drinking booze. Go me! And I STILL got sick!

The gallstone issue was already in the works. All of this is happening for a reason – I knew it was coming intuitively, that’s why I’ve taken these steps towards the cleanse. I should have stopped eating the goddamned eggs sooner.

On a humourous note, I’ve been joking about buying Alcoholics Anonymous chips from eBay to mark each month of sobriety. I’m doing this all on my own without the help of such support groups, but thought it would be funny to piggyback on their award system.
I’m just twisted that way.

Time to ingest some more chamomile tea … and horseradish. I’ve had two apples this evening. I’m feeling a bit light headed because I haven’t eaten dinner. For most of this week, I really didn’t want dinner, even though I was hungry. Another sign I think of my body telling me it isn’t well.