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.

After 16 consecutive pain-free days, george reared his ugly head once again. The term “pain-free” is really a misnomer, though, because I was in a ton of pain during those 16 days, but it wasn’t endometriosis related. I had a pinched nerve in the neck, which radiated down my left shoulder and arm, and caused much of my upper and mid back to go into spasm. I had little to no mobility of the head without intense pain. The pain also radiated upwards, causing migraines. It all began when I tilted my head back to put in antihistamine eye drops before work on December 14.

The uptime that I would have had for 16 days was completely removed by the pinched nerve. I went through two different muscle relaxers, and was also eating Advil like candy and taking regular doses of Tylenol 3. I was scheduled for physical therapy and potentially a cortisone injection to quell the pain. I bought a TheraCane, which helped only a tiny bit (but having that cane long term is a good idea).

And then, just as I was entering the next menses cycle, with lower back pain ramping up, the upper back and neck pain eased up! Thank goodness, because I can only handle one big pain mess at a time!!

Since the first day of my cycle this month, I have not had any pinched nerve in the neck issues, and I’ve had full mobility back again.

ON TOP of the pinched nerve and the endometriosis, I ALSO developed pink eye for the SIXTH time in three months, because I wore eye makeup with some kind of ingredient in it that hates my eyes. This time mascara was not the culprit - it was black eyeliner with glitter in it, which I wore on New Year’s Eve. The pink eye hit about 36 hours later, on January 2.
Perhaps I had used that eyeliner during one of my other bouts with pink eye, and it was therefore contaminated and reinfected my eye. I don’t know, but I threw it away this time, along with my other eyeliners. Ugh, it’s getting to be too expensive for me to wear makeup, I swear.
I had leftover antibiotic eye drops, so I have been putting those in four times a day for the past week, while dealing with trapped nerve pain (so THAT’S been interesting, having to lay down or lean back, because tilting the head hurt too much) and also dealing with premenstrual cramping.

The cramping had set in on December 30, and was likely the result of me drinking coffee during vacation. Caffeine always kicks up pelvic pain for me. I know better. I was a bad monkey. I could have given myself a few extra days without premenstrual cramps had I just stayed away from the caffeine.
By January 2, I thought for sure george was going to be early. I was urinating more frequently, and felt a fullness in the uterus, so I was checking for bleeding all day Monday and Tuesday. On Tuesday, I actually had no cramps until 8:40pm, when began an increasing stinging pain in my hips, moving inward towards uterus, triggering my bladder.

On Wednesday, I had intermittent pain throughout the day, worsening in the evening when I was at a meeting for a paranormal group that I volunteer for. That night, my entire back from top to bottom was seizing, because I was still also dealing with the pinched nerve pain.

George didn’t actually show up until Thursday - a day late - while I was at work. I had been wearing a pad for a few days, so I was prepared. The low back pain was brutal that day, and was aggravated by all the stooping and bending that I do as a preschool teacher. I ate 2 half pills of muscle relaxers that day, and 800mg Advil gel caps. I looked pretty ill at lunch hour that day, and two teachers commented on it.

On Friday, my head teacher and the two teachers from the previous day were surprised to see me at work. My head teacher said she was told I wouldn’t be in. I gave a contemptuous look and assured my head teacher that I would have phoned her myself, as well as the school, if I were not coming in. She replied that she thought so, and said she was confused by what people had said. I told her that it was likely the two teachers from the previous day, who saw me in pain at lunch hour, and who also know about my endometriosis. My head teacher asked me if that was acting up, and I said it was. I told her I was doing well at the moment, and that I hoped for the best, since I’d been pre-medicating for days.

The pain set in not long after class started, because as a preschool teacher I had to go right into the stooping and bending to interact with children. I consciously used the Alexander Technique as best I could the entire day. Between that, the muscle relaxers and Advil, I was able to get through the work day. That’s not to say it wasn’t a bad day; I bled through two pads, to my underwear, TWICE. Good thing I was wearing black slacks. The pain was at 6.5 on the pain scale for much of the day, though I had entered the workplace at about a 3 on the scale.
It took 2 half muscle relaxers and 1,200mg Advil gel caps to get through the day. The pain ramped further when I got home, despite taking a whole Tylenol 3, a half muscle relaxer, and 400mg Advil.
Before bed, I took another half Tylenol 3 and a whole muscle relaxer. I had intermittent cramps throughout the night.

That brings us up to Saturday - which was yesterday.
I conserved my energy, missing out on one of my husband’s birthday functions during the day. He was at a local game store playing table-top games with friends from 11am to 7pm, while I stayed at home playing it safe, trying to avoid the pain.
I took a continual amount of Advil gel caps throughout the day, and the pain level stayed at about a 4 on the pain scale.

I was able to accomplish some minor housework, which pleased me greatly.

Last night, I joined my husband for dinner at a local German restaurant. I have not had any alcohol in the New Year, because I knew the endo flare was on its way. For dinner, I chose grilled salmon on a bed of spinach.

I made all the right choices, and yet, the pain flared while I was out at dinner. One of our friends remarked that I was looking ‘green’.
I was in fact about a 7 on the pain scale. I broke the ‘no booze during an endo flare’ rule in order to attempt faster drug delivery to the blood stream. I drank some brandy with my Tylenol 3 and Soma. It really did help.
After dinner, my husband and I came back home, and I curled up in bed with the heating pads and passed out from the pain meds.

This morning, I awoke to debilitating pain from one end of my spine to the other, spread out across my back and throughout my pelvis. I was at 8.5 on the pain scale and whimpering a lot. I took a full Tylenol 3 and a full Soma, and the drugs took hold within 20 minutes. This thankfully lowered me back down to a 4 on the pain scale.
Moving around wasn’t really an option, as it brought the pain back up again.
As a result of having to take drugs first thing in the morning, I was barely functional, falling asleep at the keyboard from the drugs. My husband made me a bit of breakfast to eat, and then I passed back out again until afternoon.

I have spent the entire day in bed. I got out of bed long enough to make myself a late lunch, and this rekindled the pelvic pain, so back to bed I went, with my food, even.

This is not how I like to spend my weekends. I’m tired of doing this for 26 years. I’m tired of having spent thousands of dollars on two surgeries that have not made me pain-free. This is no way to live.

I really hope this endo flare is done by tomorrow, because I have to be back at work.

It is now 6pm, and I will get out of bed and move around. I’ve been getting out of bed every one to two hours to move around and test the waters on my body’s mobility and threshold.

…6:37pm: so far so good. I’m leaving the house to go grocery shopping with my husband!

…7:52pm: At the grocery store, my legs got weak and felt like giving out several times. I walked slowly and forced one foot in front of the other. Leg weakness is common with endo and me. The nerves radiating down from the pelvis must still be inflamed or impinged with the endo flare, because the signal does not reach correctly in the legs.
When we got home, I was helping put groceries away when I almost fainted. I literally felt myself go dark and dizzy, and then my eyes popped wide and I held onto the countertop. Now I have nausea. It’s not hypoglycemia - I ate 4 hours ago and I’m not feeling hungry. This is different from hypoglycemia. I know this feeling. It happens right before crushing pain from passing more clots. The rest of tonight should be interesting. I hope it all gets itself over with before work tomorrow!

Holy Moly, how did we roll into another year already?!?

Rather than chronicling all the bad stuff, let’s catch you up on some good things:

My uptime (no endo pain) began on December 14, and continued for 15 days!
December 22 was the last day of work for the winter break, and I got to spend good quality time with my husband and our local friends. I don’t normally celebrate winter holidays with family, because I live clear across the country from them, but I did get to talk to my family by phone. I even got to attend a party with my Michigan friends via Skype!

 
Giftmas, as I call it, was happily low-key. I am quite loved by my students and workplace, as there were a great many gift cards, hand-made gifts, and other wonders! From the gift cards, I received a bounty of new books to read. My husband got me a digital EMF detector, because I like to ghost-hunt, and because I’m also sensitive to EMF, so reducing it or avoiding it early and often is key for my well-being!

We spent Dec. 25 at a friend’s house; they are like family, so it is a relaxing, cozy environment. We went dancing on Dec. 26, and for New Year’s Eve, we went to two local bars to celebrate with friends and acquaintances.

 
My husband and I also watched a lot of Rome - an HBO miniseries. Our friend loaned it to us on DVD and we’ve been enjoying the hell out of it. I’m a bit of a history nerd, so we’ve been watching the series with the historical captions function activated. :)

During the endo uptime…actually from day 1 of the endo uptime…the discs in my neck pinched a nerve, and I have been dealing with that since December 14. It was the second time in a month that the discs pinched on a nerve in my neck; the same happened back on November 20, but the pain only lasted 3 days before righting itself. The pain this time was so bad for so long, that I missed 3 days of work. I spent all of winter break moderately to heavily medicated on muscle relaxers, Tylenol 3 and Advil. The doctor wants to do cortisone injections, which I put on hold until I got the results back from allergy patch tests to see if I have a sensitivity to cortisoids (I don’t, according to the patch test). My Ma had a really bad experience with cortisone treatment, and she and I are both highly allergic to penicillin. Because I share similar allergies to hers, I wanted to be tested before undergoing further treatment.

The joke during this time was that although I had pain, it was nothing compared to the endo pain!!

Excerpt from Facebook:
Definition of stubborn: driving self to doctor & errands on Tylenol 3 & Soma (pinched nerve is worse after trying new neck pillow). HEY, this is nothing compared to endometriosis pain! lulz
-December 30, 2011 at 1:05pm

I’d love to have muscle relaxers for each endo flare, too, but A) they’re addictive and B) they make me fat and depressed, so I usually steer clear of muscle relaxers unless the discs act up.

Of course, now that I’m cleared for cortisone injections, my neck decided to ease up! It was the longest period of time that I can recall pinched nerve activity. It was pretty brutal.

On Dec. 26 and Dec. 31, I wore eyeliner when I went out with friends, but for some reason, my eye hated the same eyeliner on NYE. Two days later - that’s today - I developed pink eye. It’s the SIXTH TIME since October 3, 2011 that I’ve had pink eye, all of which started around the time I began using Maybelline Great Lash mascara. I got a chemical and environmental allergy panel done at the end of December, and it did come back as suspect for sensitivity/allergy to cosmetics ingredients. I say suspect, because one doctor said YES it’s positive, and one doctor and one nurse said NO, it’s inconclusive. Damned doctors. No, of course there was no blood test - only skin patch test.

 
So although I’ve been sick with one thing or another throughout December, I am still happy to report 16 days of consecutive uptime between menstrual cycles. There is positivity in there, I swear!

I also went to the dispensary during winter break, which has become famous overnight, as it’s now part of a television series called Weed Wars. I re-signed up for acupuncture, reiki, chiropractic, yoga and the alexander technique. Most of these services are now experiencing a 3 month wait due to recent fame for the dispensary, and of course it’s wall-to-wall people at all hours, now. I’m really happy for the dispensary, and also feeling a bit selfish for wanting services sooner. ;)

I will finish my New Year’s entry with a list of goals for 2012:

• Go sugar-free again.
• Do a better job from abstaining from alcohol again (I know, that few-times-a-week glass of wine is awesome tasting and relaxing, but may not be doing your cramps any good!)
• Be serious about gluten-free baking at home, so I cut down on processed foods.
• Start biking to work every day again.
• Start posting more positive entries - what I can do, as opposed to what my limitations are. It doesn’t have to be one or the other, but just not all negative chronicling all the time.
• See if I can manifest the idea I had recently to gift fellow endo sisters, to share positivity and love.

(reposted from facebook)

Yesterday was really rough for me emotionally. I hadn’t even fully emerged from several days of endometriosis pain when my upper back/neck went out. This is the second time in a month that a pinched nerve issue has cropped up - it used to happen all the time when I worked at a desk, but since changing careers, the pinched nerve issue is rare. This is a really bad one, and is still on fire today, despite pounding myself with muscle relaxers and Advil all afternoon/night. I’m tired of being in pain. You have no idea how tired.
December 15, 2011 at 6:59am

(Reposted from Facebook)

 
December 10, 2011 at 8:11pm via mobile
Spent the day drugged to the gills on Tylenol 3, but at a friend’s house playing my first ever Call of Cthulhu game. Bonus - one of the gamers is an acupuncturist who did some work on me during game!
It’s pretty awesome when your friends allow you to play the game while doing various pain management stretches and maneuvers. The lady of the house even had a heating pad for me! ♥

 
December 11, 2011 at 12:36pm
Yesterday after gaming with friends, my husband drove me to my tattoo consultation. Still drugged with pain meds, I walked baby steps from the car to the tattoo parlour. The tattoo artist and I discussed the piece and made some changes, and then I bought a pair of wooden earrings. I’ve been wanting to change out all my jewelry from metal and plastic to natural wood and stone jewelry. One of the women at the shop misjudged my earring size, and I ended up with a stretch nearly a gauge in size. I was about 6ga - she took me to 4ga when she put the wooden earrings in. However, the resulting endorphin rush had a positive effect on my endometriosis pain…as in it nullified it for a couple of hours!

YAY!!! I was even able to walk up a San Francisco hill to get back to the car. Holy crap, you have no idea how cool that was. I should do endorphin pain management as endo treatment every month.

 
December 11, 2011 at 3:57pm
(Attempting to keep some positive thought up)…

Something that I have done which you may not have:

I have ridden on a donkey in a Bedouin village near Netanya, Israel.

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.

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.