I Will Not Suffer In Silence

During this month’s uptime, I accomplished the following through the Prop 215 dispensary:

• Attended two Alexander Technique weekly classes.
• Attended one Iyengar Yoga weekly class (I would have gone to a second class but work held me over)
• Got free acupuncture

 
During this month’s uptime, I accomplished the following:

• spent several hours aboard the U.S.S. Hornet walking around, ascending and descending stairs, and sitting on hard floors
• attended two going-away parties back to back
• got reeeeeeeally drunk
• went to the circus for father-in-law’s birthday request
• bicycled to work three days in a row, for a total of 8 miles
• went for walks
• continued my yoga lessons nearly every night before bed
• helped pack away a classroom of its summer theme and helped prep it and another classroom for the coming school year

 
Along with the getting drunk part, I also ingested more caffeine and more sugar than I should have allowed myself to do. I felt stressed out this whole month. My sister-in-law was hospitalised with a pulmonary embolism (she’s now home and managing it with medication), and the aftermath of my drunkening had me seriously in the doghouse with my husband, and had me feeling very depressed for a whole week. Oh, and both of these things happened the same exact week. Being on the U.S.S. Hornet was draining, because it required heightened psychic sense (we were ghost hunting), and there was some national news that triggered me emotionally (also in the same week as my sister-in-law’s hospitalisation). The week of August 14 – 20 was a really bad week.

Despite the emotional roller coaster, I experienced SIXTEEN, count ’em 16 pain-free days in a row! Sixteen consecutive pain-free days!

WOW! I definitely have a trend showing itself five months after surgery!
From May to June’s cycle, I had 20 consecutive pain-free days.
From June to July’s cycle, I had 17 consecutive pain-free days.
From July to August’s cycle, I’ve had 16 consecutive pain-free days.

This is AWESOME.

What’s even better is that no matter what I’ve done to myself diet-wise, the number of pain-free days has barely wavered. Not that I’m gonna go on a booze, caffeine and sugar binge from here on out, mind you. That shit still affects my mood something fierce.

I will say that this month’s PMS has been HELLISH. Perhaps that is tied to the poor diet. I’m angsty, depressed, angry, weepy, and desirous to claw myself out of my own skin. I feel like a three-year-old who can’t tell you what the trouble is and who resorts to screaming and kicking everything in site.

The libido thing is about the same as it is for many women with endometriosis – I enjoyed three intimate days this entire month. There were three in July, two in June, one in May, two in April, two in March, FOUR in February, and three in January. None of that has changed much since surgery, because due to endometriosis, I’m also diagnosed with dyspareunia, which happens with deep penetration. The cramps can often last for days, and the deep cramps not something I want happening between cycles, during my “uptime” or my sacred pain-free time zone. Thankfully, truly thankfully, I have a life partner who understands and respects this, as rough as it can be emotionally for him to have to deal with on his end. My husband is a super hero. We’ve been together for 11 years, and have been married for almost three. :)

I fear today may be my last day of work before I’m stuck at home in pain again for a day or three. I’m hoping I won’t miss work at all this week. On Monday, I required 600mg of Ibuprofen to get through the workday. On Tuesday, I required 1,000mg of Ibuprofen. Both days, I woke up feeling like a Mack truck ran over me. My muscles have been tired, my joints have been aching. I have increased my calcium/magnesium intake, and I’m trying to add more green vegetables to my diet for iron. I should be taking my iron supplement – I’ll do that at lunch today.
So far today – Wednesday – I have not needed to take ibuprofen. I’m heading off to work right now. Wish me luck!

My Prop 215 card expired in July, and I finally scraped up the money to renew it so I could start up the pain-management services again. I saw Dr. Ellis last weekend and paid the $135 to renew my prescription for another year. He asked me if I’ve had any adverse reactions to the medical marijuana, and I told him again about my reaction to trying out CBD.

Dr. Ellis replied that I should not be renewing my Prop 215 card at all, then, and he’d like to make the recommendation in my file that I quit ASAP. I told him that it’s not the medical marijuana I’m after – I haven’t had any in a year. What I’m after are the free pain-management services that come with having a Prop 215 card. I told him that since April, 2011, I have been without health insurance (my husband’s job downsized in December, but continued to give us health benefits until April).

Dr. Ellis understood my request and wrote down in my file that I react adversely to any form of marijuana, but that I may continue to renew my card for dispensary services and discounts. Yay! That’s all I wanted, so I’m a happy camper.

I also filed a name change. I’ve been married for three years but just got off my lazy ass to do the name change this year. After my appointment with Dr. Ellis, I phoned up my local dispensary and made an appointment for the Alexander Technique.

The next day, at the dispensary however, they could not process my name change (some company they had to call was not open that day – maybe it was Dr. Ellis himself), so I simply rescheduled it for today. My name change was processed on Monday and so today I was able to go to the class. The instructor I saw last summer is still there, and remembered me and the illness I suffer from. I received a warm welcome and had a good class with three other students, one of whom I also remember from last summer. :)

The dispensary also offers yoga, chiropractic, reiki, naturopathy, acupuncture and hypnotherapy. I’m going to try to get in on the yoga, chiropractic and acupuncture classes, since they are offered after work hours.
I’d love to go to the reiki and hypnotherapy classes; alas, they happen during work hours.

I am due on August 31st but have not had any mittelschmerz or other pelvic pain since my last cycle ended. I made it through the day of work on August 10 and so the clock was set for uptime.
While I have not utilised my uptime to its fullest this time around, by getting back into the swing of pain management, I feel that I still can do a lot before the next cycle. :)

I was couch-ridden for three days during the August cycle; Saturday, Sunday and Monday. What made it more convenient for me to not push my limits this time around was the fact that my husband was away at a game convention. Normally on Saturdays, we bum around town running errands or just being out of the house for fun. Because he wasn’t here, I not only lacked the desire to be out and about, but I had no one to drive me around while I was all medicated to the hilt.

Had my cycle fallen during the work week, I would likely have missed THREE days of work. Thankfully, it fell on the weekend again. So in the grand scheme of things, I’m still getting lucky so to speak.

I woke up Tuesday morning unsure of whether I could go in to work. The bleeding subsided overnight again for the second night in a row. Unlike Monday when I woke and the bleeding and pain resumed, on Tuesday there was no such mess. Figuring Tuesday was “Last Gasp” day, I thought that if I did go in to work, I’d maybe get two or three hours in before I’d have to go home in grave pain again. But I called work, cleared it with the director, and went in. I chanced it.

And you know what? The Last Gasp never happened! Or rather, perhaps it did, because a little bleeding did resume during the course of the day, but the pain level never got above a 4 the entire day! I did require 1,200mg of Ibuprofen in an 8-hour time frame to get through the work day, but I did NOT have to come home early in agony! This to me is simply amazing!!!

The bleeding tapered and stopped by late afternoon.

My husband took me out to sushi and ice cream last night. :)

This morning, I’m back to feeling uncertain again. I’m still spotting, and I had an uptick in hormonal hot flush and nausea again before breakfast. Because I feel like I got away with something yesterday (no ‘last gasp’), I am now worrying that today might be it, even though it’s not logical according to the ‘usual’ behaviour of my cycle. I should technically be home-free until August 31st.

We’ll see. If I make it through today, then I’m golden for sure.

On Sunday, July 31, I was driving with my husband when suddenly my lower back screamed in agony, leading me to cry out in a high-pitched wail mid-sentence. The stabbing pain lasted less than 30 seconds and was gone without a trace. What the hell!?

The very next day, PMS set in just over a week before I was due, in the form of Cleaning All The Thingsâ„¢Allie Brosh. The day after that, I got left side ovarian stabby pains, which lasted for two straight days. I ate a lot of Ibuprofen.
At this point, I knew the party uptime was over. I actually became quite depressed about this.

Befuddled by my depression, knowing I have dealt with this illness for almost 26 years now, I wrote the following:

Dear Steph:
You must acknowledge that you have entered Downtime. You are not lazy, you are not slacking – it is just time to go. You cannot fight this. You are Persephone. Just go to the Underworld quietly and do your time, as you have done for two and a half decades. You will emerge again – you always do. Stop thinking diet or depression or laziness might be bringing on the pain. It’s none of that. Just go under and do your time. Look out the window or go outside and enjoy the sunlight for one more day, but mark my words, by the end of today, you will either go of your own power or I will take you forcibly. Stop whining – you’ll be back by Monday. Sheesh. Be thankful that it’s only a cumulative of 3 months out of every year you spend in the Underworld. It could be consecutive. You don’t want that, do you?
-Hades

Still getting left side stabby ovarian pain, and having struggled through a hypoglycemic morning, I got my ass up off the couch and said, “FINE! I will go and enjoy the sunlight for one more day, you bastard!”
Well, I said a lot more cuss words than that, but you get the point.

I put on some sweats, a tee shirt, bicycle arm warmers, knee braces, bike helmet and off I went for a bicycle ride while my laundry was washing.

Here's me telling endo what it can do with itself.

Foeniculum vulgare (fennel), a pretty but invasive plant on our shoreline, along with Spartina alterniflora x foliosa (smooth cord grass), another horrible invasive, in the background.

My highest speed that day was actually 17 M.P.H. -pretty good for one on the verge of an endo flare.

After two days of stabbing pain, I then spent the next four days dealing with hypoglycemic attacks while my body went down the drain hormonally.
Despite all that, I still managed to exercise every day that week leading up to menses. I weight-lifted, I did aerobics, I bicycled, I cleaned house like a rabid meth fiend. After the bicycling, I got nauseous and weak in the way that only I know means it was pre-menstrually-related.

On Friday, August 5, the vaginal mucosa turned pink, and I knew the do0m was upon me.

So naturally I went dancing.

I wanted to go out to a club, but I could not predict how rapidly my body might go downhill, and besides, I’m flat broke financially after the traveling I did this summer, so I stayed in and held Club Steph:

Club Steph: A Gothic Nightclub Of One, held irregularly.

In short, I went to the underworld to do my downtime kicking and screaming, like I always do. After dancing, the nausea set back in. Nausea has been big during this menstrual cycle, making me think I have another ovarian cyst.

Regarding the kicking and screaming…before my second surgery even happened, I had regressed to a crying, sputtering three-year-old, throwing a fit every time I was about to go into downtime again. After 25 years, I’d just had enough of it. I was no longer stoic, I was no longer accepting of my fate, or even willing to work with what uptime I had each month.

I had a lot of hope that the second surgery would give me more uptime, and you know what, IT DID, but not enough so that an employer would notice. This is what keeps my stress level up – the fact that I know there was some benefit to both surgeries to my quality of life, but yet it didn’t make enough of a difference to employers. I had to call in sick today, and I wonder if I’ll be well enough to go in tomorrow. This of course makes my employer unhappy. She has stated to my face that she is concerned about putting me in a head teaching position because of my illness. Because she has not denied me of the position yet, I cannot take action. Because all of her discriminatory remarks as regards my illness have been verbal, I don’t have much solid proof of things to take action with, and so I am in a constant state of mental anguish and a feeling of gross job insecurity.

In order to feel a bit more justified and dignified, I went back through the past five years’ worth of data on my menstrual cycles. It looks like it wasn’t until December, 2008 that I caught on to the idea of trying to pinpoint when mittelschmerz was happening.
Though I had caught on to the idea of tracking my uptime between cycles in November, 2007, it remained an abstraction. It wasn’t actually until August, 2010 that I actively employed this tactic on my calendar.

We already know that my first surgery in 2007 barely helped me in the grand scheme of things. Sadly, I did not have the tracking discipline that I now have going on, and I use the term ‘discipline’ loosely.
All I remember from the 2007 surgery is that it felt like I gained a week of uptime back in my life each month. This means that instead of getting pain and other symptoms two weeks before menstruating, I was, after surgery, only experiencing pain a week to a few days before menstruating. This meant that my uptime between cycles had lengthened.
Once menses hit, however, I was still bedridden every month and missing work. That part hadn’t changed a bit.

I wanted to find out if my second surgery fared better, so I have spent the last two days going through my calendar and my blog posts to gather data. Again, record-keeping was crappy in 2008 and pretty much non-existent in 2007 going by calendar alone, so I just focused on the past two-and-a-half years’ worth of data.

You can see immediately that surgery provided benefit where job loss and uptime is concerned. The fact that I’m still missing one day of work per cycle is still troubling to my employer of course, but dammit, I’ll take what I can get. Check it out:

It’s not much, but it’s what I have to work with. And I did all this data compiling while stoned out of my head on Tylenol 3. Too bad I am completely useless in my current line of work when I’m on the Tylenol 3. Maybe I should just go back to tech work and find a job working from home full time.

One last thing that is very important to note for my morale:

I had my second surgery in December, 2010. Upon recovery, I was not bedridden from endometriosis in February, March, April, May or June. I was couch-ridden from the pain in July and August, but there has been moderate nausea with these last two cycles, and as I keep saying, I think there’s an ovarian cyst going on, on top of the endometriosis. But I have not spent 12+ hour days in bed in my pajamas with the heating pads on me at all hours of the day and night like I used to before surgery. This is a vast improvement over the first surgery I had in 2007.

There is still hope that my condition will improve. I just need to get back on track with the dietary restrictions. I lapsed from May onwards due to graduation, travel to see family, and general summertime fun. I need to cut sugar and alcohol again. It will be difficult. I will cry again. I will wail and gnash teeth over it like I did last time, but I’m doing this to further the benefit of surgery.

During my July uptime, I spent part of a day helping my husband with the technical side of his website, which felt good because it reassured me that even though I’ve been out of the computer industry for the past four years, I still know enough Linux to get around. My husband uses WordPress for his blog (like I do for this blog). Making the blog look exactly how you want it to involves a bit of waving dead chickens over the evil php files. I prefer to use ssh and edit the files in vi, because I’m awesome.

Anyway, the same day, we got a replacement bed, since our Keetsa mattress failed us. Thankfully it is under warranty. A bit of housecleaning and mattress wrangling was required, so chalk that into the “exercise” category for the day, heh…

I also was a bad monkey in July. Our friends, whom we crossed the country to see all married back in June, came out to visit those who could not be their on their wedding day. We were fortunate to hook up with our newlywed friends the day before they were to jet back home. We went to the tiki bar and I got blotto. Ah well. I love to tiki.
I did penance the next few days after that by bicycling to and from work.

Speaking of work, that was the week I was telling you about! I was a head teacher, even with a hangover! Wooo! I’m totally badass. I survived the week perfectly, despite two parent issues I thought might become nasty. Parents are crazy. I say this not having once ounce of parenting experience in my body. :p

I celebrated the end of the week of teaching by meeting with a tattoo artist. I hope to get a back piece by Winter Break. :D
I had wanted the tattoo by the time of my birthday, but I did not manage my money well … again.
This will be my first ever tattoo! I have body piercings, but I’ve always been too afraid to commit to a tat. The thing is, I’ve had the same idea in my head for a back piece since the early 1990s. I think it’s about time I finally committed.

So I had a good time during July uptime. I was free of endometriosis pain for three days before mittelschmerz, which lasted only a day. Then I was pain-free again for nine whole days before I got a jabby lower back pain, and then I was pain-free for another whole day before the slide to downtime began.

The uptime was a total of 13 days, of which nine were consecutively pain-free.