zeptember

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.

I created a new version of the george F.A.Q. today. You can also click on the “george” link at the top of my journal to reach that page.

I spent all day yesterday on Tylenol 3 with a heating pad, just like old times. The pain was bad and then non-existant and now it’s bad again this morning and I’m about to take more Tylenol 3.

This is really depressing, but I must note that I’m no longer suicidal.

The Yasmin is still in my bloodstream, as is evidenced by my still-bouncing legs, but I don’t feel the rage anymore. I don’t feel like sobbing uncontrollably anymore. And as I said, I don’t feel like killing myself anymore.

I had a horrible nightmare that I was fired from my job and that I got so verbally violent about it that they decided to also withhold paying me my last paycheck.
Of course, that won’t happen in reality, but it was still a shitty nightmare to have, and reminds me that I still need to get the hell out of that place.

And now, I’m off to drug myself and start looking for a new job.

Nobody took care of the issue I left behind on Wednesday, so when I got in on Thursday, I called and left messages for the customer. I don’t know if she ever got back in touch with the company.

I was emotional and kept to myself all day. Both of my fellow disgruntled cow-orkers were not in, yesterday. Neither was my boss. But yesterday was supposed to be Mandatory Team Drinky Outing at a stupid restaurant/bar not unlike ChiChis in the movie Office Space.

Every hour that passed was grueling. Time dragged on forever. With nearly every call, I wanted to burst into tears. The only relief I had was that since my boss was not there, there was nobody to overload my inbox with email assignments. Still, I took seven from queue and worked on those.

By 3pm, I could stand it no more, and asked the director of the department if I could leave. He said I could. I called my boyfriend at work and asked if he could also come home. I knew I’d need babysitting.
All the way home, I thought of ways to kill myself again. The noise wouldn’t go away. It had been 27 hours at that point since my last Yasmin pill. I got home and began taking more Lorazepam and washing it down with brandy. My boyfriend came home and I talked crazy talk again, said I still couldn’t handle being in my head and wanted out. The Lorazepam made me sleepy, so we took a nap. My legs were still twitchy - it’s from the Yasmin, they’re always bouncy and twitchy to the point that it hurts. My boyfriend has been such a sweetheart - he’s been massaging my legs for me. So he did that as I laid in bed, and then he laid down next to me for awhile.

Finally, I couldn’t stand the leg twitching anymore. On top of it, I was getting more annoying george cramps. My man suggested we go for a walk. We’d done that on Thursday, too, and the sun felt very nice, and it helped calm my legs down. We’d walked 2 miles (3 km) round-trip. This time, the sun was setting. My man took me on a much longer walk inadvertently, and unfortunately, the cramps began to really set in. On top of that, I was very emotional this time around. I saw a woman with two young girls, all walking back from the store and each holding bags. There was a shopping cart abandoned at the end of the street, so the mom unloaded the bags of groceries from her young daughters (who looked to be around ages five and six) and put the bags into the cart. I got all teary-eyed because I remember being so poor that we didn’t have a car, and we’d have to help mom carry groceries a mile from the local store, too. And their clothes are old, so I know this family I was looking at is poor. The mom rushed past us with the shopping cart, probably embarrassed like my mom always was. The girls, oblivious to poverty yet, skipped along behind her. After they were out of sight, I began to cry. A block later, we passed an apartment complex called the Capri. This reminded me of the hotel by the same name that my father and his wife operated for about ten years after my dad retired from Ford Motor Company. Being reminded of my dad made me cry because I’m so ashamed to be so emotionally broken. I’m supposed to be strong like he is - a survivor. And what would he think of me planning to off myself? And the Capri - it’s no longer there - some big corporation handed my dad a lot of money to move off the property so they could demolish it and put in a bank. I only got to stay at the Capri once during the ten years my dad owned it.
Not half a block later, I looked down and saw some thistle. As soon as I had looked down and saw the thistle, I thought of Scotland, and of our honeymoon that we want to have in Scotland. I began to cry harder, realising that there never would be a wedding or a honeymoon in Scotland.
My man held onto me and we crossed the street towards the beach. This made me continue to cry, because the beach is exactly where I wanted to go so I could drown myself. The tide was in, too.
We sat on a bench and I cried and my man held me. I watched the waves roll onto the shore - it’s just the bay - not the actual ocean, but waves are waves and make a little crashing sound that’s nice to hear. The wind was up out on the bay, so it wasn’t like lake water lapping up onto the shoreline - there were little crashing waves.

After a time, I told my man about the three images that had made me cry. This in turn upset him. On top of this, my pelvic cramps were getting worse, and we were still a mile away from home. My man felt even worse, apologising for taking me “on a death march”. I told him my legs at least felt better for it. In all, we walked about 3.5 miles (5.6 km).

When we got home, we decided to meet some friends at the tiki bar. It wasn’t pissup night but two of our friends had said they’d be there last night. We decided to join them - we needed a distraction. However, I still wasn’t out of the mental health woods. I popped a Tylenol 3 on top of all the Lorazepam I’d been taking all day. My pelvic cramps weren’t that bad as to need Tylenol 3. But I took it, anyway. I knew too that I’d be drinking. I didn’t care.
We got to the tiki bar and it was packed. Our friends weren’t there. It was the first time it was just me and my man there. Eventually we got two stools at the bar to sit on, and we watched the master bartender do his magic. On top of it, he was chatty and funny, and we got to sit right in front of his work space. So that was a nice distraction. I had three drinks last night. As soon as I stood up to leave, the full weight of the drinking plus the Tylenol 3 hit me, and my man said I was “near slobbering drunk”.
Great.

I don’t remember a thing after my man paid the check so we could leave the bar. He tells me I staggered out to the car with his help, I staggered into the house, and passed out on the bed. He kept waking me to feed me water. I woke up with a mild hangover.
When I woke up, something had changed. I didn’t feel suicidal. I felt relieved that I didn’t have to work, that I have all day today and tomorrow to just chill the hell out.

Of course, that’s when george took his opportunity. I’m full on bleeding, now, and the cramps are just what they used to be before surgery. I’m on two Tylenol 3 for the pain, just like I always used to be. This alone makes me want to cry. I never get a break. I’ll always be broken. The surgery was a fucking waste of money.

My man told me that he’s been considering comments made by Kahleida to my April 5th post, wherein she wrote, “I would sugest somehow finding a part time job and also getting into a good therapy”. My man says he’ll help support me during that time and thinks it’s a good idea for me to consider. I still think of it as being a dependent, though. I guess that’s where the therapist part comes in, heh.

The drugs have finally kicked in, and the heating pad helped with the pain. So far today, I’ve had no Yasmin, no Lorazepam, and no suicidal thoughts. I’d wondered if the Lorazepam could also be exacerbating my mental health issues (a topic also raised by Kahleida in her comments to my April 5th post), but even well before the meltdown on Wednesday, I’d been taking Lorazepam during the week but not on weekends and I was fine. I really do think it was the Yasmin doing all the nasty work.

I am still very emotional today, and I’m very pissed off that I have pelvic pain. I do know that I just need to be patient - that perhaps it’s the sloughing off of the interior scarring and scabs this time around, plus going off the Yasmin, that has me in pain. I don’t see my surgeon again until June, so that’s two more periods I need to allow myself to have, to see if the pain lessens.

I’m just so tired of being in pain.

I know it could be so much worse. I know that. Some of my friends are in much worse physical health condition than I am, and they persevere.

So, enough of the feeling sorry for myself for a second. I have gossip!

My friend didn’t announce anything to me or our circle of friends but hops onto IRC and leaves a cryptic message about getting married. She set her nickname to ‘IEsherpa’ which makes us think she’s in Ireland. So I called her voicemail and apparently she’s left the country as of March 31 and won’t be back til April 15.

So now we’re all waiting anxiously for the next episode of “Days Of Our Sherpa”.

Sherpa, thank you for the distraction. NOW SPILL THE DETAILS!

My surgeon called me back yesterday and sounded argumentive at first, because she thought I’d already quit taking the Yasmin in favour of the progestin-only pill called Micronor.
Whereas I had told her that I’d research the Micronor and decide if I wanted to take that, or stick with the Yasmin, or do nothing at all.
The surgeon got it in her head that it would be Micronor or nothing, and so thought for the past month I’ve been on nothing.

When I told her all that I’ve gone through on this latest mental breakdown, she changed her mind as to the culprit. Before this, she kept saying it was the synthetic estrogen component in the Yasmin that was making me so whacky. That’s precisely why she’d wanted me to try the progestin-only Micronor.

Well, after hearing about the loose cannon mouth and attitude and 5150 label, she told me it was the progestin in the pill that was making me this way. Now if ya’ll read several entries back in my journal, you’ll see that I was the one to pin this originally. But noooo. Once again, nobody ever listens to me. Even when I raised that question on an IRC channel, someone said, “are you sure it’s the estrogen?

But I digress.

Yesterday was spent being babysat by my boyfriend. In the evening, two more friends came over, and we went out to dinner. I was hungry but didn’t want anything to eat. My boyfriend fed me tidbits off his plate, and that’s all I had the stomach for. I really just wanted a bottle of vodka, but I drank water.
After dinner, we went and got dessert. I’d wanted a banana split and kept asking for that all afternoon. When I finally got it, I forced it down. I’m glad most everyone joined me, because otherwise, I’d have taken three bites and had been done with it. We all made a good stab but still didn’t finish it. I was happy to sit there with the guys in an ice cream palour, though.

The whole time we were out, I was super tired from all the anti-anxiety meds I was on. And my brain STILL wouldn’t shut up. I’d just stare off, brain still whirling, but not loud enough to make me wail and clutch my head like I’d been doing the night before.

Today I’m going to go in to work. I’ll see how long I can take it before I come home. If I need to come home, I am to call my man and he’ll come home, too.

I feel I somehow understand a comment one of my friends made months ago. She’s sick, too, but not with major depression or side effects from Yasmin. With her disease, she declared she’s only seeking help for the peace of her husband, but she doesn’t really want it. I didn’t understand that at the time.
I do, now.

I’m only trying to get better and get past being suicidal for my man, who still talks marriage with me even now. Even others - friends - family - don’t have the kind of sway my man has right now. I don’t mean to be cruel by that. I love my friends and family.

But given my own life, doing it for me alone, how I feel right now, I’d press the reset button.

I’m told the Yasmin takes like 48 hours to leech out of the body. We’ll be at the 24-hour mark around 11:30am today.

Last night I took 800mg Ibuprofen for george cramps. We’ll see how bad that gets, too. On a regular schedule, he wouldn’t have been due til the 12th.

Lastly, I wonder if anyone at work took care of the issue I requested when I called in sick, yesterday. I HIGHLY doubt they did. And I also wonder if I’ll be fired for absence or the one they love to use - performance issues. Even though, just last Friday, I was told the director of support loves me and doesn’t want me to go. That all changed on Monday when I didn’t get through my assigned mails in time and HR was still stewing over some comments a full week prior to that.
My boss is off work today, though. We’ll see.

Time for more Lorazepam.

A great gift to me would be to send me on a 100 day retreat to a Dzogchen camp.