I Will Not Suffer In Silence

…Annnnd a pain flare, 7 on the pain scale, shaky and nauseous, hits right before a school assembly. Kill me now.

…

12:30pm – I pounded 800mg of Ibuprofen on the way to work, and it kicked in by the time I was leading the children to their assembly. However, I had to be up and down, sitting or kneeling on the ground, and it was still quite painful. Add to that a woman with a broken foot seated next to me, and so I could not navigate around her with ease in order to sit in front of the class to direct them during their assembly song. As a result, the children did poorly, and I got in trouble from my head teacher for not moving back and forth from next to the students to in front of the students and back again. I told her about my pain and about the woman’s broken foot in my way, but she was still upset. Of course, she herself could have gone in front of the children, now, couldn’t she?
One of the parents (a friend’s significant other) told me not to worry about it, but I am. The whole ordeal was just bad, because the owner of the school’s husband insisted that my first and second graders learn and sing California Dreamin’ by The Mamas and the Papas.
WHY. WHY did my head teacher allow that song for a Secretary’s Day assembly? I went to her weeks ago vetoing the song, and pleading with her to confront the guy and ask for another song. But she told me she picks her battles with him, and caved in for that one, but won’t cave to him for the graduation songs. Of course, SHE picked the graduation song to be You’ve Got A Friend by James Taylor. It’s a more poppy version by another artist, but still, it’s that song.

I meant to rant about my pain, and it turned into a rant about work politics. But there you have it. And I’ve popped another 800mg of Ibuprofen for the pain to keep it at bay.

Let’s start with a review:

My second laparoscopy was December 17, 2010, in which I was diagnosed with new endometriosis growth, and put at Stage I.

My surgeon found endometriomas on both ovaries, and cleaned out as much as she could. She removed a 1.4cm endometrioma from the right ovary, and had to leave the endometrioma in the left ovary, because it was too deeply embedded, and I did not want to lose my ovary. There were adhesions pulling the left ovary back towards my uterus again, just like in 2007, so she cut away the adhesions and repositioned the left ovary as best she could.

I spent the next three months healing from the surgery, and still experiencing debilitating pain. However, between pain cycles in May and June 2011, I experienced 20 and 17 consecutive pain-free days respectively – the highest number of consecutive pain-free days EVER since I began meticulously recording my cycles.

In fact, for the entire year of 2011, I never fell below 10 pain-free days in a single monthly cycle, which was an improvement over the year before.

Beginning in April, 2012, I experienced moderate nausea on the 14th, 17th and 19th (throughout my cycle). I had to take ginger tea, the nausea was so intense. This to me usually signals an ovarian cyst, so I called my surgeon and scheduled an ultrasound.

Then, on May 3, 2012, something unexpected happened, that has (I think) nothing to do with the endometriosis.

On May 2, 2012, the workplace had the carpets cleaned as per routine, but when I walked in the building on the morning of May 3, I immediately had respiratory distress. Now, I have a history of breathing problems and chemical sensitivity dating to 2009, when the interior of my apartment was sprayed by an exterminator for ants at the landlady’s request. But I’d never had wheezing issues or felt like I was drowning in lung fluid before.

On May 3, my breathing got worse over the time I was waiting for a backup assistant to come into the classroom, and by the time someone arrived, I was a sobbing basket-case from not being able to breathe. The director of the school drove me to my doctor’s office, where I had some preliminary tests run, and was given an albuterol inhaler and an epi-pen. I was told I probably have asthma.

Three weeks later, I finally got to see my allergist, who ran me through a computerised breathing test, and detected a ‘lung blockage’ and gave me a steroid inhaler. Within 2 days on the steroid, I had ‘roid rage’ and discontinued it. I continued taking the albuterol inhaler, though. Four weeks after that, I was given another computerised breathing test, and nothing had changed. I was given another steroid, and this one worked for about three weeks, at which time I became clinically Manic on the stuff, so discontinued it. I have used the albuterol throughout, as a ‘rescue’ inhaler.

So the ovarian cyst took a back seat to a new health condition; asthma.

I researched whether asthma is also an autoimmune disease, and was dismayed to find that people don’t really know much about how asthma develops. Even my own asthma specialist doesn’t know if asthma is autoimmune.

The reason I want to know is twofold: first, endometriosis is autoimmune, and when a person has one autoimmune disease, it means they have other concurrent as well as other undiscovered autoimmune diseases.
Second, there have been cases of lung endometriosis.

My family has a history of bronchitis, emphysema and endometriosis, so this is something I should be concerned about. I’ve never smoked cigarettes, but I did grow up in a heavily industrial and polluted area with pack-a-day cigarette smokers. I’ve always been sick with sinus infections and bronchitis every winter and/or spring.
Oh and hey, as of a 2010 study, it appears that emphysema may be autoimmune. File that away for potential future reference…

In the meantime, my periods were getting worse, and I was back to being fully bedridden during each cycle – something I’ve not had happen regularly since before surgery in December, 2010.
This means I had just over a year and a half of slightly improved health from surgery. That is to say, I had a longer uptime between periods, and one or no bedridden days per cycle, BUT I am still getting up to 7 or 8 on the pain scale at times, I am still experiencing heavy bleeding, and I am still consuming Tylenol 3.
Basically, it boiled down to “I’ll take what benefit I can get from the surgery.”

Once I was being treated for the asthma, I went back to address my worsening symptoms, still suspecting an ovarian cyst. On July 11, 2012, I saw my surgeon, who performed a vaginal ultrasound. She detected a 7mm (0.9cm) endometrioma on my right ovary.

For those who are questioning, YES, it IS possible to detect endometriomas through vaginal ultrasound. My surgeon visualised the 1cm endometriomas on both ovaries in September, 2010; three months before my surgery (more on sizing in a moment).

So my suspicions are correct in that I once again have an ovarian cyst, but I had not anticipated an endometrioma. I thought it was just an ordinary cyst, and I wanted to get specs on it to make sure it wasn’t too large to reabsorb.

What I got instead was really bad news; an endometrioma does not reabsorb or go away.

Ovarian cysts are formed when the egg doesn’t fully release from its follicle, and just keeps growing inside of the follicle. The cyst can live in or on the ovary, or in the fallopian tube, and most often goes away on its own, despite causing some nasty pain and/or nausea while it is present.

An endometrioma is “a tumor containing endometrial tissue.” Endometriosis has traveled outside of the endometrium and has embedded itself onto or into the ovary, where it begins to grow. It is called an endometrioma when it goes from being an embedded implant to a growing, swollen, fluid and blood-filled foreign mass. It is now called a tumour.

I’m told that endometriomas are not considered a threat under 4cm in size. Past that, one should be closely monitored in case the tumour turns malignant.

We discussed how to manage the endometrioma and the endometriosis in general for the long term. My surgeon knows I will not take hormone therapy. I made it clear to her that I also do not want any further surgery unless my life depends upon it. I told my surgeon that I just want to be made comfortable til I hit menopause. I want pain medication and pain management. I’ve already put myself back into acupuncture, massage and naturpathy for alternative healing.

My surgeon exclaimed that it’s such a long time before I hit menopause. I told her no, my Ma hit menopause by age 43. My surgeon has referred me to a pain management clinic, and is still urging me to try the Mirena IUD, which puts out a small amount of levorongestrel (the same ingredient as in emergency contraception called Plan B). Due to my extreme sensitivity to hormones in the past, I don’t care how small the dose is, I’m not touching any further hormonal therapies.

I had a phone call with my Ma today, and confirmed that she hit perimenopause by the time she was 40, and was definitely in menopause by the time she was 43. She said her mom also had early menopause.

So that’s where I am at…waiting for menopause to hopefully burn the endometriosis out. It’s a hope, with full knowledge that it might not work.

February 2, 2012
~7:30am
Today is the cautious day. I am moving slowly about the house, trying not to stir up the Endo hornet nest. Gonna try to go to work today.

8:05am
And the doom just ramped up, but I hadn’t arranged for a sub cuz I was sure I’d be able to go in. Now I have to go in and wait for the late morning shift to arrive to hopefully stand in for me. It’s going to be grueling. Why do I do this to myself? Oh yeah, cuz I’m stubborn.

~12pm
barely maintaining on 1,400mg of Advil

~1pm
Today’s my long day. Working til 6pm. Kill me now.

~7pm
Today was brutal, but I survived work on 1,400mg of Ibuprofen and a heating pad. The children were super at helping me out. ♥

February 3, 2012
~11am
Rough day for me today. I thought the endo flare was over, but it returned while at work. Came home sick for the third time this week – just like old times before the last surgery. :(

~6:50pm
Feels later than it is. Normally that would be a good thing, but with all the pain and meds I’ve had today, I just want the day to be over.
> > Nate (my friend): did you rest?
Me: Hah, of course not. I’m stubborn. I have been couch-bound all day, though, does that count?

~11:59pm
Okay, I’m finally giving in and going to bed. I spent the day couch-ridden, but productive. I have gone through most of my stockpile of news articles and research bulletins – I have enough to post one a day for the month of March (National Endometriosis Awareness Month)! Will continue stockpiling research, of course.

February 5, 2012
Saturday was a cautious day for me physically after spending a week w/ an endo flare. I was excited that my body was able to do the Time Warp at the Castro Theatre. HOORAY FOR UPTIME! Time to LIVE LIFE until the next flare, around Feb. 24. I want to go out dancing every Friday, and I’m going to really try to get to another favourite dance club on Mondays right at 9pm as often as I can.

(Later that evening…)
Whoops, I guess I’m not officially in uptime, yet. Had great energy all day, cleaning the kitchen and bathroom. Went grocery shopping with my husband, and on the way out, I zoomed the grocery cart like a giant scooter all the way back to the car. Now my legs are shaky and I feel a bit nauseated. So I’ve been saying for the past few days, “okay body, TOMORROW then.” I say it again. Okay body, TOMORROW then…it will be uptime.

February 6, 2012
You have GOT to be kidding me.

This is the second woman in the last two years to have completely faked an attempted suicide and resulting coma. I now doubt whether she has endometriosis, or any of the listed medical conditions she talks about. Trust is completely destroyed, and now I’m hearing rumour there’s a third. Seriously, I gave these strangers a chance. I accepted them at face value, because they said they go through what I go through with endometriosis. I am ready to unfriend all of them because of three women. I am ready to shut down again on humanity – the way I used to be back in the early to mid 1990s. I was Mean Not Nice. Everybody deserved my wrath. Everybody was guilty until proven innocent, and even then, people got a squint of mistrust. Is that what I need to go back to? I know it’s not, but damn that’s how I feel right now.

I had a lot of pre-george pain this cycle, to the point where I was taking over 1,000mg of ibuprofen to get through the day.

I had intermittent right side ovarian stabbing pains all day on Tuesday, January 24.

On Wednesday evening, January 25, I got a sudden droning headache, shivers, 
G.I. issues, crushing fatigue, runny nose. But because I have allergies, it could EITHER have been a food reaction OR a virus.
 People are dropping like flies at work from the stomach flu and bronchitis.
Interesting to note; the crushing fatigue started before dinner. Everything else began during dinner.
So was it a combo of PMS and fighting off a virus, PMS and food reaction, or just PMS?

On Thursday, January 26, I woke feeling much better. However, by afternoon that day, I had the distinct feeling of adhesions pulling deep inside my abdomen. I forget what side; I want to say it was the right side. I had forgotten to record it til Sunday in my calendar. According to facebook, I ate 1,200mg Advil to get through the day on Thursday.

On Friday, I was so busy that I don’t remember if I was having intermittent cramping. It was daycare day at school, and parent/teacher conferences were happening. I was floating from the preschool yard to the elementary yard to parent conferences all day long. Then I picked up one of my students after work and babysat him and his brother til 9:30pm that night.

The next day, on Saturday, January 28, I experienced mild uterine cramping. I chose to drink with friends rather than take any pain meds, because it was an all-day birthday gathering for one of my friends. I wasn’t ready to admit downtime was coming for me. I still wanted to play. I never got drunk that day, but I did have five drinks over the course of about 7 hours. I paced each drink and also consumed water.

I was not hungover on Sunday – like I said, I never got drunk. Sunday however was brutal. I experienced moderate uterine fullness and soreness, and spent the entire day on the couch near tears from the pain. My entire lower back was on fire, and deep inside my pelvis there was a volcano of death brewing. 

I took 800mg Advil, half a Tylenol 3, stretched slowly in doorways, used my TheraCane on the lower back, and used heating pads. I was close to having an emotional meltdown, because my period hadn’t even started, and yet I was in so much pain. Later, I dug into the Tylenol 3, which helped, so I took half pills of that for the rest of the day.

I had 15 pain-free days in January (non-consecutive). The good news though is that nine of those 15 were consecutive.

George arrived on time on Monday, January 30. I’d like to note that January is a “Blue Moon” menstrual month for me, since I got george twice (January 5 and January 30).

Sunday night I had gone to bed nauseous and expecting to get george during the night. Thankfully, I awoke on Monday with minimal pain and no nausea, so I went in to work. Of course, by the time I was leaving for work, the pain and nausea set back in. I was able to make it through the day on 1,100mg of Advil, a hamster bladder, and some whining.

On Tuesday, January 31, I wrote in facebook:
“So is it bad that I’ve been sitting here for the past 43 minutes, waiting for the pain to stop so I can eat food and get ready to go to work?

I guess the 800mg of Advil for breakfast so far didn’t do the trick.

I have 30 minutes before I have to leave for work, but I need to make the judgement call in the next 10 minutes in order to attempt to find substitutes for the day.”

Just under an hour later, I wrote, “Can’t find substitute – still short-staffed. Going in with heating pads strapped to my body like incendiary devices. Hoping for the best. I may very likely have to take a half of a Tylenol 3 on the job just to get through.”

I tried 800mg Advil, then 3 hours later I took 600mg more Advil to no avail, then a protein bar and half Tylenol 3. Finally, the extended care supervisor found some staff to juggle, and gently pushed me out the door around 11:20am. She’s super empathetic and in general awesome that way.

The pain hovered between 6.5 and 7.5 on the pain scale all day and all evening. I saw that I still had some Vicoprofen in the medicine cabinet, so I decided to give it a try again, since the Tylenol 3 didn’t appear to be dulling the pain enough for me. I took half a Vicoprofen and half a Robaxin muscle relaxer I also had left in the cabinet. The pain during this cycle has been centered low on the uterus and pressing into the bowels through the anus. It’s enough to make me whine and cry like a three-year-old. It’s been REALLY brutal.
Tuesday night, I was in bed before 9pm because of the strength of the medications I had taken.

In the middle of the night (3am), I woke from a crazy dream in time to find myself bleeding through my bedclothes. George had circumvented the thick overnight pad and went through my underwear and pajama bottoms to the bed. I had to change my clothes but was not about to change the bedsheets at three in the morning! Thankfully the bed wasn’t a disaster.
Wednesday morning, I awoke with heavy flow, nausea and grinding uterine pain. Thankfully, the woman I had asked the night before to sub got back to me and said she would come in. I took another half vicoprofen and half robaxin pill. Within 20 minutes, maybe less, I was higher than a kite, so I went back to bed. I was fine as long as I was bedridden. If I tried to get up, I was super dizzy and cranky from the medication.

The pain hit me again four hours later, so around 10:30am I took a half vicoprofen and half robaxin. Once again, it took roughly 20 minutes and I was higher than a kite from the meds. This time, however, I decided I was just DONE being so stoned. I was done being bedridden, and now I was depressed over it, because I couldn’t just stop being high. And besides, the pain was leaking through the meds – just as it had done with the Tylenol 3.

That’s when my memory kicked in – didn’t I have a problem with vicoprofen in the past? I turned to my own journal, knowing full well I’d find out that I had a big problem with vicoprofen. OH LOOK, THERE IT IS…
http://www.livingwithendometriosis.org/steph/2009/10/vicoprofen-review/

And so I spent much of the day stoned – trying to leech the meds out of my system. I took only Advil for the rest of the day and the pain crept back in, but I was adamant that I did not want to take any more opiates or narcotics til the bleariness of the vicoprofen wore off. And here I am, at 6:15pm, STILL FUZZY from that shit!!!

All I can do is smack my forehead and label the bottle THIS WILL KILL YOU or some other means of avoidance. I don’t want to throw the stuff away, because in case of emergency, I’d rather have something in the house.

Now…going back to the end-of-January pain cycle. I was saying it was really painful pre-george.

My question is, am I having a bad pain cycle because of the stress at work during the last two weeks of January (parent observations, prep for report cards, and parent conferences)

OR

am I having a bad pain cycle because I chose to drink with friends two days before george was due?

OR

am I having a bad pain cycle because of BOTH the stress and the drinking?

OR

am I having a bad pain cycle for no reason other than It’s Just Endometriosis?

It’s my age-old question, steeped with guilt over the possibility that I am doing the wrong thing to bring more pain.

Whatever the reason or lack of reasoning, the fact is that in the new year, 13 months after surgery, I am still missing work and still on occasion bedridden from endometriosis.

I was bedridden one month after my surgery when the first real menstrual cycle hit. I was bedridden nine months after surgery.
I was bedridden 10 and 12 months after surgery.

The good news is that since my surgery in 2010, I was only bedridden for FOUR cycles, and only couch-ridden during TWO cycles out of 14 cycles total in the year 2011.
That’s much better than I was doing before surgery, where I was bedridden nearly every cycle of the year.

Doing the numbers helps me keep focus, helps me keep a semblance of morale up.

I’ll continue to track bedridden times through the year 2011 and see if I’m edging back towards pre-surgery illness. I’ll continue to tweak my diet, even though overall, dietary changes have not in my opinion shown vast improvement to the overall pain level during each cycle. If I don’t keep doing something to fight, then there’ll be no reason to fight, and the endo really will consume me.

My workplace, some friends and family, and total strangers will not see any improvement in my condition. I see little fluctuations that to me are major. I must continue to point them out so you can see how major in the scope of my illness these small changes are, and why I must keep fighting.

While many of my friends get to sleep in on a Saturday morning, or get to enjoy the Lunar eclipse this morning, I get to be awakened from slumber with such pain that leaves me stupefied with my mouth agape as I stagger about in the dark to get my heating pad and medicine.

Before I can take my medicine, I have to eat something, and all the while, the pain grows ever more intense, and all I can think while being up before the sun on a weekend is, “at least I was able to finish the work week before the endometriosis flare went full bore”.

But I really want to see the Lunar eclipse, and I can’t even get several blocks down to the parking garage to get an elevated view of town because of the pain I’m in, though I’m reeeeeally tempted. Me, trying to walk a mere 4.5 blocks, putting one foot in front of the other, with radiating nerve pain. Or…me, getting into my go-kart of a car, and pressing the accelerator with the radiating pelvic nerve pain at 7.5 on the pain scale…when I’m nauseous from the pain by any slight movement. =(

Yes, I’m wallowing in the pain and depression of being a dependent invalid at the moment.

One of my friends told me she is jealous that my debilitating pain is at least localised and cyclical, which means I have windows of time which I can predict there will be little to no pain. I have critical windows of time to live my life and not worry about every minute consequence an action or a food or a drink will have on my pain level, while she cannot predict the pain – it strikes anywhere in her body at anytime, and so often that she is on medical disability and can no longer work.

While I am sad that many people, including women with the same condition I have (endometriosis) are disabled by the pain full time, it does not lessen the reality of my own anguish, which I have been suffering for 26 years. Before surgery, I did apply for disability and was denied, because although I could barely work, I could still work 14 (non-consecutive) days in a month. As long as you can work 14 days out of a month, you’re not sick or disabled enough to qualify for disability insurance.

I have had two surgeries 3 years apart, to minimal effect on the pain. I am still bedridden from the pain. I am still missing work from the pain. I am still taking narcotics for the pain. Doctors still do not know how to control or manage the pain. There is still no cure or proper treatment for endometriosis. Doctors are still arguing over theories of what even causes endometriosis, while millions of women world wide suffer a pain so severe that most men would die of in minutes if they had the same condition, because the pain is akin to going into labor every 2 – 4 weeks for 26 to 35 years in a row. Hell, there are women with endometriosis who have said that actual labor and childbirth was LESS painful than the endometriosis pain, I kid you not.

Cyclical pain or full time pain, it does not matter. The pain is real, and it is debilitating, and it is crushing. It slams one into a depressed mental state faster than you can say “ouch”, and the depression sinks one to the depths of the murk so fast, that if you don’t pay attention, you might miss critical cues telling you that the person is finally just DONE enduring all this pain.

Endometriosis may not kill us directly, but the illness is always in danger of killing us indirectly. There is no benefit to feeling jealous over someone who “only” has cyclical pain. Jealousy diminishes the harsh reality of the sufferer, making one feel a sense of survivor guilt, making the emotional pain even harder to bear.

So I wallow in my very real pain as it strikes me early this morning, while I miss a beautiful Lunar eclipse and wait for 2 Tylenol 3 to even try to make a dent in the pain, while I sit on the couch with a heating pad on my broken body and breathe those shallow breaths that one breathes when in so much pain, while trying to remind myself to do relaxation techniques and breathing exercises to get through this flare.

I want the pain to stop. I want it all to stop.

Last night, I developed uterine cramps after eating pasta alfredo with Langostina tails for dinner.
I also had a cup of caffeinated tea with dinner. The pain started on the way to a concert, and got worse throughout the night. Standing or sitting did not matter, the nerve pain stung and radiated from the uterus, settling in the lower back, causing debilitating pain by the time I left the Peter Murphy concert. I descended the stairs of the concert venue slowly, wincing with each step, clutching the railing.

By the time I got to the bottom of the stairs and was out on the street after the concert, I was nauseated from the pain. On the way home, every time the gravity changed in the car (turns, changing lanes, curving highway), the inflamed nerves screamed, and I cried out in pain.

However, once I got home, I refused to take meds, because I wondered if it was my kidneys acting up. Other organs are easily afflicted by endometriosis, and if the kidneys were suffering, then adding pain meds might make things even harder on me to process. Instead, I used an exterior pain relief gel, and did some Chi Nei Tsang around my pelvic cradle to see where the pain was coming from, and how it was radiating out.

Though the stinging, burning nerve pain felt like it was in the sides of my pelvic bones, in my lower spine and radiating down my legs, the Chi Nei Tsang helped me realise that the originating source of the pain was actually in the uterus. It was so inflamed that the nerves broadcasted a pain party to the entire pelvic cradle. It grabbed hold of the trunk of nerves in the pelvic cradle and shot down the sides of my legs, almost to my knees.

The pain relief gel comes from NationalAllergy.com, and it is called Super Blue. I rubbed that on my lower back, and then situated a heating pad over my pelvis.
Further, I moved my body slowly to figure out the best position for rest. It was one of those times where I wished I had my old futon mattress again, because our bed was far too soft given the level of pain I was in.

Last weekend, I had developed pelvic pain on three occasions right after drinking coffee, so I have since gone back to drinking caffeinated tea, and only in moderation; one cup at a time, and not every day. I had not recently developed pelvic pain with the tea, so I’m suspecting the langostino shellfish as the culprit to my pain. Shellfish is said to contain lots of dioxins, which feeds endometriosis growth and flaring, though there has not been any in-depth studies that I know of to show you to prove this. It’s just one of those things that I know to be a solid suspect, based upon my pain history when consuming shellfish, especially at or near my cycle.

This morning, I am running late for work, and the stinging pain resumed once I crawled out of bed. I will be taking 800mg of Advil gelcaps to get through the day. I am two to three days away from the onset of my next cycle; george will be here by Wednesday or Thursday, in time to ruin weekend plans. However, I have a consultation with a tattoo artist about a design I want on my upper back, so I plan to be there, drugged to the gills or not.

George arrived on Monday, September 26th. The pain was minimal and well managed with Ibuprofen, and I was able to work a full day.

However, Day 2 of my cycle had things ramping up considerably. I woke with moderate pain and bleeding, but still went to work because it was “parent observation week”, and my head teacher made it quite clear that she needed me there, and was not pleased that my health chose such an inopportune time to not be cooperative.

These are not her exact words, but damned near close. When I had given her a heads-up about my health the Friday before parent observation week that my next endo flare was due, her exact behaviour and words were to let out a tsk, a fed-up loud sigh, drop her shoulders and give a look of disdain as she exclaimed, “You’ve GOTTA be kidding me.”

She later apologised, but told me she was feeling overwhelmed/anxious at the prospect of anyone else being in the room with her that week, because the children would be more out of sorts with a substitute around, and she did not want the parents observing the children under those circumstances.

I understood where she was coming from, but I did not appreciate the giant guilt trip because of her anxieties. Her guilt trip is what led me to make the choice to be there to support her, thus pushing the limits of what my body could handle during an endometriosis flare.

So on the second day of parent observation week, I managed my pain with 1,600mg of ibuprofen. Here’s me first thing in the morning, popping 800mg of Ibuprofen in an attempt to get the pain under control (it worked):

Popping 800mg Ibuprofen before work

I stayed for the whole school day, more than fulfilling my obligation to my head teacher, since parent observation hours were over at 11am. However, there were resource classes that I needed to take the children to (library and computer class), so I stayed. Then there was naptime, so I stayed. At the end of the regular school day, before extended care started, I experienced a sudden flare of pain and sympyoms, right after consuming my last dose of meds.

Dammit, I tried to do overlap but the pain snuck in, anyway. My whole body went weak, and I got dizzy. It became hard to walk. I felt like lead for hours. This is ‘normal’ for endometriosis. The lead weight and crushing fatigue sucks. I know part of the fatigue is from all the Advil I was taking, but at least the pain never got above a 6 on the pain scale that day.

I went home and slept for 4 hours.

I then woke in a panic – it was 7:30 and I had not set my alarm! I scrambled out of bed, heart racing, thinking I would be late for work! Then my husband told me it’s PM, not AM.

And I hadn’t even had any Tylenol 3 that day. I was just that screwed up from the pain and fatigue. I was up for a couple of hours and then went back to bed.

I woke in searing pain the following morning, on September 28, just before 5am. I had nausea with the pain. I gingerly got out of bed and took half a Tylenol 3, because I needed to be up for work in the next hour and a half. It took about 35 minutes for the medicine to kick in, with me suffering there in bed the entire time. The Tylenol 3 mostly managed the pain once it did kick in. When my alarm went off, I got up for work and took a shower. I experienced heavy bleeding and moderate pain.
In a daze, I ate breakfast, and went to work. I took a total of 1,400mg of ibuprofen that day, and worked a full day in pain, because of the above-mentioned parent observation week.

Thursday, September 29:
Once again, I was awakened by searing endometriosis pain. This time it was 1am. I popped a Tylenol 3 and 600mg Ibuprofen, and waited for it to kick in. By 2am, I was dissociated enough from the pain to go back to bed. My alarm went of four hours later.
I still required 1,200mg additional ibuprofen to get through the workday. I was very tired and crampy, despite the bleeding tapering off to spotting.

Friday, September 30:
This was a daycare-only workday, as the head teachers were conducting parent conferences all day. This is usually loud and high energy, and wild, as three classrooms’ worth of children are condensed into one large classroom for the day. Despite abundant assistant teachers and teacher-trained assistants in the room, it’s like trying to get monkeys to come down off the chandeliers on a daycare-only day. I had low energy and was spotting, but I managed to get through the work day. I did not take any medication that day, because I was fed up with how much I’d taken all week.

Saturday, October 1:
I was still experiencing low energy post cycle, but I was expected to be at a Child Development refresher class all day. I accomplished this with my inner child kicking and screaming the entire time.

Sunday, October 2:
As happened after my last menstrual cycle, my anxiety was way up after this cycle. It’s not normal, but it’s happened twice in a row, now. Hmmm. I had to do another full day in the Child Development refresher class, and woke up with swollen eyes. As the day progressed, my right eye got worse. By 2:30pm, half of the eye was blood red.
Wonderful. I’d developed pink eye – and likely got it from training center the day before. My pupil in the right eye was bigger than in my left eye by 6pm. I called Kaiser Permanente, who freaked out about the pupil because of my age, and they urged me to go to an urgent care Kaiser center. This, after my whole weekend was shot by being in a training class, and now I have to sit in an ER? I was NOT happy. The result: contagious pink eye. I was given antibiotic drops, which I had to take for 10 miserable days.

Monday, October 3:
I missed work due to the pink eye. Had I not gone to the training class, which was foisted upon me last minute, I would not have gotten pink eye, and I would not have missed work. On top of that, I experienced left side stabby ovarian pain all day, despite the fact that my period had just ended. How’s that for a kick while I’m down?

My immune system hates me. I wish I could fire it. I’d pushed it to its limit by working during an endo flare, and the pink eye was able to sneak in. It’s always something.

So I made it to the end of August. I only missed one day of work (on August 8, during the last cycle).

I’m starting off September by missing half a day of work on the 1st. I am likely to miss the entire day of work on September 2nd. I cannot reach anyone to sub for me for the whole day, though one teacher said she’d cover me for the early morning daycare-before-school-starts shift.

Yesterday was the first day of george. Right as I was about to go out the door to work, the cramps began, so I did actually take 600mg of Ibuprofen before work. Then I began spotting while at work, but I still made it through an entire work day.

The pain ramped up last night while I was at a friend’s house checking out their place for party space for my upcoming birthday. I took half a Tylenol 3 but the pain and bleeding kept ramping up. When I got home, I think I took a whole Tylenol 3 and went to bed. I can’t remember.

This morning, despite the pain and bleeding, I ingested 600mg of Ibuprofen again and went in to work. I lasted til 10:30am, when I could stand it no longer and took a half Tylenol 3.

An hour later, with the pain still ramping up and nausea also welling up, I quit five minutes before my lunch break. I went in search of people to fill in for me for the rest of the day. I shuffled around the building, found two people to help me out, and listed the gaps in coverage for the secretary to help figure out the rest, and I came home.

I ate a full Tylenol 3 with my lunch at 12:30pm, and was bedridden from 2:30pm – 7:30pm.
Whoops, this means I completely missed the appointment with my shrink.
I’ve been groggy and couch-ridden for the rest of the night. It’s 9:38pm now and I’m just now entertaining the idea of dinner. Normally I’m prepping for bed by now.

I’ve already notified everyone’s voicemails that I likely won’t be in tomorrow.

Sad, disappointed and depressed describe my current state of mind. I wasn’t bedridden in February, March, April, May or June. I was couch-ridden from the pain in July and August, and now officially bedridden and couch-ridden in September.

The caffeine and sugar have got to stop. I’ve said this before. I know what a huge challenge this is for me. I might even need to go vegetarian again. My caffeine intake rose sharply at the end of June, so I am definitely blaming my rekindled addiction for part of the pain. Caffeine is a known inflammatory agent. I reintroduced white meat (birds only) towards the end of May or sometime in June. I’ll cut caffeine and sugar, first, then wait a few months to see what all evens out before deciding if meat has to go again, too.

Stress management is also key, but I’ve already set that in motion with the Alexander Technique and Yoga classes, and the monthly acupuncture (too bad I can only get monthly acupuncture through the dispensary, but I’ll work with what I’ve got available). I just need to remember to also add in the daily progressive relaxation tips again.

This too shall pass.

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.