I Will Not Suffer In Silence

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.

I made it through work today! It took 1,200mg Ibuprofen and half a muscle relaxer (the back/neck are still locking up, but not all the time), but I made it! YAY!

And then I took my husband out to sushi dinner, cuz today’s his birthday! The owners made him a special dish:

Now that the endo flare is over, I’m golden until the end of the month. Gotta be strong and adhere to the goals:

• Go sugar-free again.
• Do a better job from abstaining from alcohol again.
• Be serious about gluten-free baking at home, so I cut down on processed foods.
• Start biking to work every day again.
• Keep posting more positive entries - what I can do, as opposed to what my limitations are - and post between cycles, as opposed to during or right after an endo flare.

I have a few additional goals:

• See if I can manifest the idea I had recently to gift fellow endo sisters, to share positivity and love.
• Make a video update on how my life has been since surgery in December, 2010.
• Finish editing and then upload two more humourous videos I’d done in the past year or so.

Reposted from facebook:

November 14, 2011 at 8:08 am
In the You Have Got To Be Kidding Me department, one of our listed helper substitutes just told me she can’t come in for me today because she has to go grocery shopping.
I’m in too much physical pain because of endometriosis, and you have to go grocery shopping? Are you leaving for the store right now? Will it take 8 hours to get your damned groceries?

November 14, 2011 at 9:25 am
This morning, while trying to convince myself the pain was not ramping up, I consumed two bowls of gluten-free granola cereal and a protein bar, and STILL got a hypoglycemic attack, headache and nausea.
I only get hypoglycemic during an endo flare.

November 15, 2011 at 7:57 am
Going to try to work today, despite the endometriosis pain.

November 15, 2011 at 5:40 pm
Thanks, everyone! Your thoughts helped me survive the day! I also needed a ThermaCare heat wrap and 1,100mg of Advil, but I got through it amazingly enough!

November 17, 2011 at 7:44 pm
Unexpected recurrence of endo pain today - thought it was over by now but no…another cylon attack. Then I came home to cat pee all over the kitchen counter…AGAIN.
FML

(Reposted from facebook). The date today is actually Feb. 1, 2012, but I went back in time to put this journal entry as a followup to the Tired Of Always Having To Play Catch-up entry.

Morning Dream
October 20, 2011 at 6:01 am
I had been hanging out with Patricia somewhere on the peninsula, when it was time to return home. Something happened, where my car broke down or I missed my train or something. I called Catie, who agreed to come pick me up. I gave Catie the wrong directions, and we ended up going North on Highway 101 instead of South. We didn’t want to get caught up in San Francisco traffic. Catie knew a short cut, and suddenly we were on a skyway. Catie was no longer driving; we were alternately on a fast rail transport and in the back seat of a limo, heading along this skyway which ran along Highway 101 and the 280 interchange.

Suddenly there was a 3-year-old boy with us in the limousine; he had dark brown wavy hair and reminded me of a boy at the school I work at, but in the dream he was Catie’s second son. I don’t remember his name. He was walking around in the back of this limo, and for a moment stood in front of my sitting body. He placed his hands on my knees, put his head on my lap, like children do when being affectionate. He had been talking with me about something while I also had conversation with Catie.

I got a cramp, and my face twisted in pain. The child looked up at me in pure empathy and asked, “You feeweeng otay, Miss Step?”

I looked into the child’s caring eyes and softened my face. I smiled and replied, “Yes, I’m feeling better, now.” I tousled the child’s hair, and he smiled. Then I added, “Miss Steph needs to take her medication.”

Right at that point, I woke from the dream with level 8 endometriosis pain. I managed to get out of bed. It was 4:27am. I found and took a whole Tylenol 3 and promptly burst into tears from the pain.

I put myself back to bed with the heating pad, and laid there gritting teeth, moaning in pain, and doing breathing exercises for the next 30 to 40 minutes until the drugs kicked in. Finally, I was able to drift off to sleep again for a bit.

During sleep, my brain has always found creative ways to tell me I need to wake up to take care of myself.

 
October 20, 2011 at 11:58 am
I’ve already consumed 1,400mg ibuprofen today while barely maintaining at work. Severely short-staffed, otherwise I’d be home in bed. :(

 
October 20, 2011 at 2:41 pm
An actual 4.0 earthquake hit while we were performing our classroom’s first earthquake drill of the year, on the same day as the California ShakeOut drill. Much of the state did their drill at 10:20am, but we put ours off til the afternoon. The director came into the classroom and told us to keep the students under the desks, as we’d had an earthquake. She had no idea we didn’t feel the quake, and had no idea we were doing a drill. Some classrooms did feel the quake and dove under desks. So strange that we did not feel it!
Once the children learned there really had been an earthquake, some began to cry as we were given orders to evacuate the building. The school was given a quick examination, and officials let us back in. We talked about the quake, and the children finished off the day. I cannot remember what my pain level was through all of that, or if adrenaline set in from all the chaos.

 
October 20, 2011 at 8:16 pm
A 3.8 earthquake hit while my husband and I sat on the couch, either watching TV or eating dinner or both. I was drugged up on Tylenol 3 and still in pain from endo. I posted to facebook, “2nd quake in a day - as big as the first. I wanna go home!!!”
By ‘home’, I meant Michigan.

 
October 21, 2011 at 12:41 am
My husband had come into the bedroom to say goodnight. I was laying there in bed, all drugged to the hilt, talking with my husband, when another earthquake hit.
I couldn’t take it anymore, I burst into panicked tears, sobbing that I’m bedridden, and earthquakes keep happening, and how am I to get to safety if The Big One hits next, etc…my husband looked at me like I’d lost my mind. I was grabbing for his arms to pull him close to me for protection. I explained that we’d just had another earthquake. He didn’t believe me, so I grabbed my iPhone, which thankfully was right next to me, and called up the USGS website. Sure enough, a 2.1 earthquake had just occurred, in the same spot as the other two quakes. Now, a 2.1 is a minor quake - most people might not even feel it. This is the smallest quake I have ever felt, but I think I was in a heightened state of awareness/sensitivity that night. Three in one day freaked me the f**k out, I will tell you right here and now.

Think about it for a moment.

You’re bedridden with an incurable chronic pain illness, and a natural disaster occurs. You may or may not have one person with you at that moment. You are unable to react in a quick and potentially life-saving manner to get yourself to shelter. This was the first time in my life that I saw my illness as something that could kill me, because in my worst state of pain, I could DIE from not being able to move fast enough to safety.
That thought made me want to live in a bunker and never chance going out during an endo flare ever again.

I don’t know how I did it - maybe it was all the pain medication - but I was finally able to get to sleep that night, and as per my usual, I was stubborn the next morning and tried to go in to work.

On October 21, I had finished more than half of my work day before the pain ramped up around 3pm. I had been taking Ibuprofen all day to manage the pain, but just as my class let out for afternoon daycare, the pain spiked up and I nearly blacked out from blood loss and pain. Here’s what I wrote in facebook:

“My workplace is severely short staffed and my head teacher is always bitter about me taking time off due to the pain. Today the workplace got to see what it’s like when I don’t stay home on bedrest like I’m supposed to during an endometriosis flare. I nearly collapsed on a child while fastening him into his carseat at the end of the day. What happened was I was blacking out from all the blood loss and pain. Then I lost my balance and nearly fell over before opening the door of the next car.
The extended care supervisor thankfully is empathetic enough to sense when I’m in trouble, and took me by the arm, helping me to get my things. Then the owner of the school, also very kind, insisted on driving me home.
Now I take Tylenol 3 and go fall over safely in a bed.”

The next day thankfully was a weekend, not a work day. Again, my posts to facebook:

October 22, 2011 at 11:47 am
Heading into another endometriosis flare, after a morning of minimal pain. Just popped the Tylenol 3. The pain is ramping up faster than the drug will have time to kick in. I was stubborn AGAIN and did not overlap my meds. When will I learn; just because I was not in pain doesn’t mean I wouldn’t be soon.

October 22, 2011 at 12:12 pm
pain… winning

October 22, 2011 at 1:04 pm
guilt…pain…tears…frustration.

October 22, 2011 at 2:00 pm
Dissociation from pain finally kicked in after over an hour. I’m on 1 Tylenol 3 and 600mg Ibuprofen.

For those who ask why I only take Tylenol 3 and Ibuprofen for the pain, please see the growing list of all drugs (and therapies) I’ve tried to manage the pain.

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.

September 1: Day two of george. Took half a Tylenol 3 by 10:30am while at work because the pain kept ramping up. Came home from work after only three-and-a-half hours there, took a full Tylenol 3 and went to bed. Slept for five hours, completely missing my appointment with my shrink. I was bedridden from 2:30pm - 7:30pm, and couch-ridden for the rest of the night. Called everyone I needed to for work to let them know I probably would not be in the next day.

September 2: Tried to go to work, despite the pain, because I’m afraid of being fired (the PTSD from the company who fired me in 2007 for missing work due to the pain still wells up every month). I took 600mg of Ibuprofen before work in an effort to stave off the pain.

I came home after one hour.

I took half a Tylenol 3 when I got home, took another 600mg of ibuprofen at 12:30pm, and also took another half Tylenol 3 at 12:30pm. I cannot remember how much more Tylenol 3 I had that day.

We had a standing invite with our friends that night, so I tried it out. They live up one flight of stairs now, instead of three, but any stairs are a nightmare for a person suffering from chronic pain. I slowly climbed the stairs, holding onto the railing like one who is holding a rope to climb a rock. The thing is, one of our two friends who lives there also suffers from chronic pelvic pain (fibroids) and back injuries, so having one flight instead of three flights of stairs to climb is a definite improvement for her.
While visiting, I was able to sit in a chair and chat with our friends. We did not play card games or board games that night, which was for the best, because minimal movement was best for me. Sitting upright in a chair or reaching back and forth across a table for a table top game would not have worked out for me. I was on Tylenol 3 and Ibuprofen while at our friends’ house, but again I cannot remember how much I took in total that day.

September 3: Saturday. The cramps were very heavy that day, but the bleeding was subsiding. This was the day of the annual Scottish Highland Games. Again being stubborn, I did not want to miss this event, so my husband and I agreed to bring the wheelchair along. I was in minimal pain, but I still popped 400mg Ibuprofen and a half a Tylenol 3 just to make sure I was ahead of the pain game. I was coherent all the way to the fairgrounds. My husband got the wheelchair out of the trunk and I pushed it. I walked slower than my normal pace so as not to stir the hornet’s nest of pain, but by the time we made it from the car to the front gate, the pain had returned.

I ended up taking a total of 2 Tylenol 3 that day, and 1,200mg of Ibuprofen if I recall correctly. I alternated between pushing my wheelchair and being pushed in it, but I was so drugged that I walked in a stupor. I felt like a mental patient whenever I was pushing the wheelchair. I felt the usual embarrassment with having to rely upon the wheelchair, but I did not let it consume me.

My dashing husband

Already exhausted from the pain, but ready to see the games

Caber toss

Caber toss

Weight For Height competition

Weight For Height - ball

Wheelchair bound

Standing upright - towards the end of the day

Glad I had my spare spoon with me!

 
September 4: Sunday. Again, we had plans to be somewhere, and I refused to let the pain stop me from living my life. I was experiencing moderate to severe low back pain, and intermittent pelvic pain, but I gave the thumbs up to attend the monthly Alameda Antiques Fair. I was in search of a dress and accoutrements for my upcoming birthday party, which was to be a 1930s costume theme.

I was on Tylenol 3 and Ibuprofen all day. I cannot remember how much I took. I had my wheelchair in trunk of my husband’s car, but I did not use it. However, I did want it at times, but I wasn’t as bad off as I was the previous day, pain-wise. I rested often and walked slow. Bleeding had slowed, and I spotted all day.

Giant flea market on Alameda Naval Base (photo from web)

 
September 5: Monday. Labor Day - I was off work. I was feeling much better, and my energy was up, but so was my anxiety for some reason. I was near panic attack all day.

The next day, I was back to work. It was my uptime, at last!

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 Things™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.