Just checking…

(reposted from facebook)

Droning headache? check.
Crushing fatigue? check.
Low-grade fever? check.
Puke-burps? check.
Increasing dizzy spells? check.
Accompanying an endometriosis flare? CHECK.

Autoimmune disease: because chronic pain and flare-ups aren’t enough; you also have to get cold and flu viruses as a sidecar.
December 8, 2011 at 8:28pm

Early December cycle

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.

November cycle

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

A nightmare

(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.

Tired of always having to play catch-up

How is it that October’s cycle never got recorded here? I have a memory of writing it up!

I’m so upset that I have to first catch up on October before proceeding to November.

This blog is firstly for my own good, so I can track changes cycle to cycle. I can’t believe I didn’t make time to chronicle October.

Every month, it seems that I have to go back through my iCal, Twitter and Facebook accounts to piece together what the pain was like. I no longer keep a running log on this site.
It’s all real-time, in the moment on social networking sites. But the problem with that is once the feed scrolls, it’s gone. Out of sight, out of mind. What caused the pain to increase or decrease over a certain cycle? Oh I dunno, I posted about it over on Twitter and/or Facebook instead of HERE!

GAH.

End of September cycle

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

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.

Dismal September “uptime”

I enjoyed a mere four pain-free days before pelvic pain returned. I don’t know if this was early mittelschmerz or what, but on September 9 and 10, I endured intermittent stinging and stabbing in the uterus all day long.

Then, on September 11, I had to contend with dyspareunia all day. I had intense low back pain with stabbing uterine and cervical pain all day after intimacy.

For two days after being intimate with my husband, I had right side stabbing ovarian pain all day. It made me cry out “OW!” or yelp in pain each time. Around 4pm on September 12, there was continuous pulsing pain for several minutes, and on September 13 I had intermittent stabbing ovarian pain all day again. Despite this, I bicycled to and from work on September 12 and 14.

I was able to enjoy three more pain-free days from September 14 to September 16.

On September 17 (my birthday), dyspareunia ruined all the fun again, and lasted for two days.

I then had three pain-free days before the pre-menstrual pain cycle set in on September 22. To make things worse, I contracted an intestinal virus, which caused mean stomach pain on September 23, leading to diarrhea, which lasted for two days. I felt like I could die. My entire body ached and my mood was more foul than my worst PMS.

Speaking of PMS…stomach flu aside, I have to say that this month’s PMS was the most aggressive and depressing since I was on synthetic hormones. The level of rage I had in the past two weeks equals that which I experienced when I was on Yasmin back in 2007. I phoned my mother to ask when she started menopause, and she thinks it was right around the time we moved houses back in 1983, which would put her at 39 years of age. She gave several instances of being a raging psycho hose beast from hell (which my diaries corroborate).

Well here I am at age 40…so I wonder if I’m starting down the path to menopause. Half of me shouts HOORAY! because the hope is that with menopause, the endometriosis will burn out.
The other half of me is freaking the eff out for two reasons: #1 I still look, act and feel like I’m in my late 20s, and #2 all the other crap that goes with menopause is terrifying to ponder.

Going back to the whole pelvic pain thing…
On September 25, I attended the annual Alameda Home Tour, despite getting over the stomach flu and enduring more pre-menstrual cramps. I was on Tylenol 3 and Ibuprofen all day, but not to the point of stupor - I took half pills of Tylenol 3.

To cap off the day on September 25, I developed a migraine.

I have started tracking the migraines. I also had a migraine back on September 7, and I complained on facebook that I felt like I was having an increase in migraines each month ever since my surgery last December. My friend Wanda is the one who told me it could be tied to my cycle, and to start tracking it, so I went back as far as I could online and in my iCal to see if there was a connection.

Well wouldn’t you know it, there IS, and it goes back YEARS:

September 7, 2011 - Migraine lasting several hours (two days after period ended. Also, it was 86F outside and I was at work in the heat for a couple of hours, then bicycled home).

April 27, 2011 - mild to moderate cramps, migraine from hell, lasting 5 hrs (on first day of period)

January 19, 2011 - light to moderate pelvic pain two days after my period started, “with migraine that lasted five hours, then major pelvic pain and bleeding with cramps at 11pm.”

October 12, 2010 - Migraine noted in facebook (1 day after period ended)

January 29, 2010 - Migraine lasting for several hours on same day spotting started.

January 8, 2010 - Migraine noted in facebook (During period)

December 26, 2009 - Migraine noted in facebook (during Mittelschmerz)

July 9, 2009 - pounding headache two days before period.

April 6, 2009 - moderate headache on 4th day of period.

January 26, 2009 - Migraine noted in facebook (3 days after george ended)

In all, during my supposed uptime, I enjoyed TEN total pain-free days, which were non consecutive. This is dismal compared to the last few months.

Early September cycle

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

My dashing husband

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

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


 

Caber toss

Caber toss

Caber toss

Caber toss


 

Weight For Height competition

Weight For Height competition

Weight For Height - ball

Weight For Height - ball


 

Wheelchair bound

Wheelchair bound

Standing upright - towards the end of the day

Standing upright - towards the end of the day


 

Glad I had my spare spoon with me!

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)

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!

Missed 1 day of work in August…

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.

Entering end of August downtime

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

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

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

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

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

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

This is AWESOME.

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

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

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

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