zeptember

I had a moment of “Oh god, my past has caught up with me”, and I’m not doing too well as a result. The mental demons are with me, and they won’t leave.

I’ve been putting off this meltdown all day because I had to get other stuff done. I had to be functional. I knew that the later I put off the meltdown, the more it will affect me for work tomorrow. But I didn’t have time for it. I had to get other stuff done.

What started all of this was realising this morning that I’ve missed yet another committment. I’ve broken yet another promise I’d made to someone, because I forgot about it. My life is full of unfinished projects and broken promises because I can’t remember things.

I’ve not been able to remember things ever since the car accident in 1994. I explained this on LiveJournal today to my friends, and I feel that for the first time I’ve really outed my situation fully and publically. That was really hard to do but I need HELP with remembering shit.

I’m reposting here what I said on LiveJournal so I have it saved for posterity:

The reason I am so forgetful is due to a car accident in 1994 in which I bowed out the windshield with my head. I was not wearing a seat belt. My boyfriend at the time made a left out of a shopping center driveway in rush-hour traffic after oncoming traffic stopped to let us go. Who didn’t stop was an SUV speeding down the center lane to make the light. They hit us going approximately 50MPH head on, while we were doing roughly 20MPH out of the parking lot.

But I’m here to tell you that I was NOT this way before the car accident. My entire personality changed because of that car accident, which is common with brain injuries. Just because a doctor tells you you’re fine, doesn’t mean you are fine. You know your body. You know when you’re not fine.

This is not the first time I’ve mentioned the forgetfulness. Perhaps the first time on LiveJournal, but I’ve mentioned it here before.

I’ve mentioned my car accident in general several times in my old journal, on Wed Feb 12 13:33:38 PST 2003, Fri Jul 11 18:13:31 PDT 2003 and Thu Jul 1 16:24:52 PDT 2004.

I’ve mentioned forgetfulness in my old journal, but it was always in context of being really stressed out due to unemployment, so I can’t say definitively that the forgetfullness in those cases was due to the accident. There’s the entry on Sun May 16 16:15:18 PDT 2004 where I mention “I’ve forgotten to attend no less than three events in the past week for various friends and aquaintances, even though I’ve had these things marked on my calendar and even though I’ve talked with my bf about going to these events. This is horrible and it doesn’t make for keeping the respect of my friends. I’m so sorry.”

Yep, stings like missing my friend’s opening night last night.

Also mentioning the Tourette’s-like condition right there in the open on such a public forum today, what was I thinking? I got even more depressed after I posted. I felt like I couldn’t take it back. I felt like I’d truly admitted that I’m a fucked up invalid type mental patient who needs institutionalised care.

I’ve mentioned the babble here before, and I’ve mentioned the babble thing in the old journal too, on Wed Sep 10 00:43:44 PDT 2003.

But this journal is not a public forum, linked to friends lists and such. Sure, the journal itself is public, but it’s not widely linked and advertised the way LiveJournal is. I dunno why that matters to me, but it does. It always has.
As with my post here back in December, I started drinking upon even mentioning the babble issue in LiveJournal today.

Oh the drinking thing… I’ve not been able to remain fully sober ever since my grand falling off the wagon three weeks ago, September 10, 2007, at a local nightclub. I had a bad day at work and off the wagon I went, in pure Edina Monsoon style.

I’ve not gotten trashed since September 10th because I don’t feel like being a living tribute to Eddy again. But I have continued to drink here and there. Like, tonight. To dull the noise. To quiet the demons.

I don’t like having to admit I have so many problems. I don’t want to be dependent on people. I want to be tough and cool, to quote my friend Justin, the way I used to be a dozen years ago.

But no. I’m broken. Life and my past doings and abuses to myself have all caught up with me. I have Endometriosis, bulging disks in my neck, scoliosis, gluten allergy, yeast sensitivity, chronic forgetfullness, congenitally misaligned knees that crack loudly and squick people when I walk up the stairs or bend my legs, Tourette’s-like babble that I can barely control, and major depression.

YEAH, GO ME, I’M A WINNER.

Why am I not institutionalised, yet? How is it that someone like me can still run around all free range?

Lock me up. Give me the good drugs. Remove me from this constant awareness that I’m only going to keep getting worse.

I’ve even forgotten to tell you about the raging wildfires last month, and about the car accident that shut down one of the bridges, whereby I had to take a day off or risk being fired for friggin being TARDY again.

And I had such a good day, yesterday, too. I would have continued that good streak, had I only remembered that I had to be somewhere last night. I kept checking in with my man, kept looking at the calendar. But there was nothing on the calendar.

But there was.

I went out shopping today for Halloweeny stuff with anaguma, tabbykittie and gloomcookie, and I bought my child! Yes! I am a proud parent! I have the cutest baby EVAR!

I got her at Toy Safari - she was the last baby but they say the’ll be getting more!

Immediately I got new parent rabies and began looking for outfits for her. I want a creeky cradle for her! At one point, we were in a pet store of all places, and I saw a party hat - well you know it matched my daughter’s skin!

We then took her to Applebees, where she got all excited over the dessert menu, just like mama!

I’d say I’ve hit the motherload of girliness, but I found the Krypt Kiddies website where my daughter came from, and the proud parents include men, so… I’m not the only rabid parent out there, chick or dude.

Her given name is Kitsune but I want that as her middle name. I’m thinking Jessica for her first name - not completely sure, yet.
I do happen to have a baby name book in the house, though! (I bought it to name my kitties eleven years ago).

This is the best present to myself for my Birthday Month! (™podle)

Well I went and did it. After all these years of railing against myspace…

Just over a week ago I found out my nephew, who I’ve been denied access to all these years, had joined myspace at the tender age of 12. His father told me this a week before his 13th birthday.

I’ve been denied access to both of my nephews from their births because my brother is fundamentalist Christian and I am openly so very not Christian, and also openly a freak to boot.

I’ve never even been allowed to change their diapers, let alone take them for a stroller ride, a walk, a romp in the park, a drive to the zoo - any of it. Lord knows I might convert them to Satan’s ranks or something. Cuz you know, the Lord hates a non-Christian something fierce.

Right, so… I found out my nephew was on myspace and BAM after a day’s thought, I joined up. I need SOME way to reach out to this kid, who has never been allowed to read Harry Potter for example, because it deals with witches, who of course are the work of Satan.
I have got to let this kid know that I am there for him. The very fact that he got on myspace purporting to be a 16 year old (hee, 17 now), and the fact that he’s showing pix of himself on myspace with various chix tells me he’s about to go on the worst rebellion of his life, and I want to be there to help guide him so he’s not self destructive about it, if I can, even remotely.

My Christian fundamentalist cousin for example turned to Christian punk rock, then to real punk rock, then went on a wild chase one night trying to elude police for some reason down Woodward Avenue and 8 mile area, and died in a firey crash when his car, exceeding speeds of 100MPH, crashed into an underpass.

Please don’t let that be my nephew.

I got out.

So can he.

THAT ALL SAID, if you’d like to add me, look for ztepf on myspace.

Thank you.

THE BEFORE:

THE AFTER:

…and the collection, all the bad, all the good.

I keep looking at myself in the mirror. :p And I think now that I should have gotten more purple streaks added. I can still do that, of course…

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.

When I hopped back into bed last night, I finished a book I’ve been reading, called Two Ravens: The Life and Teachings of a Spiritual Warrior. I cried - I didn’t want the book to end.
Two Ravens was a member of the American Indian Movement (AIM), the members of which I’ve followed for over thirteen years, starting with Leonard Peltier, whom I learned about in college. The last news I’d heard on AIM members was in 2005, when the feds were on the hunt for John Graham for the murder of Anna Mae Pictou-Aquash in 1975. Turned out the feds were trying to get Arlo Looking Cloud, already in prison for her murder, to indict Graham in the murder, and they even started going after Peltier again as a main suspect, too. More info here and here.

Back to Two Ravens - he had been a warrior for AIM, and like many Native Americans, suffered from substance abuse, mainly alcoholism, as well as (justified, IMO) racism against white people for what the whites have done to the natives since their arrival in the Americas. But over time, Two Ravens became a spiritual leader for his people, and later started building a bridge between all other races and his own. He was persecuted by his own people for this. It’s such a moving book.
The only other book I have in the house by a Native is Custer Died For Your Sins, by Vine Deloria, Jr. I need to read more books from Deloria, and seek out authors and storytellers from other tribes.

Growing up, my Ma always told me I am of Cherokee descent, and that her grandmother was “a full blooded Indian”, but we don’t know from which tribe. In a lot of the U.S., Native Americans are still commonly called Indians - a misnomer dating back to Columbus.
Ma always told stories about how there’s an Indian burial ground on the hill above the family farm in Kentucky, and that although the land was purchased with this old burial ground, the family never went up there to disturb it. Ma always liked to braid my hair and tell me I had high cheekbones and that I was her little Indian girl. Bugger the fact that I’m so pale I could blind someone. Nevermind that, Ma said - when I *do* tan, it turns golden (only after I fry lobster-red, first). Once I am golden, I’m definitely Indian, Ma would insist. It wasn’t until college, when I learned about Leonard Peltier and Vine Deloria, JR., that I stopped telling people that I was part Indian.
However, I had the love of Native Americans in me because of my Ma’s stories all those years. That’s when I became interested in the history of AIM. I started to donate to the Free Leonard Peltier fund. I started becoming angrier with the white race, listening to the band Rage Against the Machine.

In recent years, I’ve given to the Native American Rights Fund.
With my genealogy research, I’ve tried for years to get information on one Dolly Burke, the one who Ma says is the full blooded Indian in the family. If I can just discover if this is true, and from what tribe she came, then I will feel less restless in my own spiritual development.
Genealogy has already helped me discover that I am part Polish and part Scottish and part Canadian on my dad’s side of the family. Genealogy has helped me to discover that I’m not Scotch/Irish on my Ma’s side of the family, as they’ve always told me - I’m actually Appalachian. Sure, the Appalachian people originally came mostly from Scotland and Ireland, but come on, in my family, there’d been no immigrants from Scotland and Ireland since the 1630’s. I’m sorry, but you can’t claim lineage to the motherland if it’s been that long a gap in time. You become a new breed - Appalachian.

All of these things help piece together my spiritual puzzle.

I don’t want to claim any one ancestry, because I am from many. I do want to claim CORRECT bits of ancestry, however. I don’t want to go around adding JEWISH Polish customs when we actually came from CATHOLIC Poles, who had different customs, for example. The same will be true once I find out whether our family really did have any Native American descent. I’ll want to know WHICH tribe and find out THEIR customs, and incorporate THEIR beliefs into my overall spiritual and belief system.

Of course, I’m not hellbent on ONLY finding out my various ancestry just so I can ONLY utilize and revive beliefs and spirituality from those fronts. I also go into world culture - I have a deep respect for Tibetan Buddhism, for example, and I am fascinated with folk magick the world over.

Alas, something is still lacking for me - I want to find out who Dolly Burke was. If I find out she was *not* Native American, will I continue to be so enamoured with the Native American legacy? The answer is most definitely yes.

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 fucking 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.

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.