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.

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.

July 14 was our eleven-year dating anniversary. We had celebrated early this year, when we took a trip to Boston to see a friend get married. On our actual anniversary day, I experienced moderate low back pain and fatigue. I was still spotting from the previous day, though I knew this was the last of it for this cycle.

Despite the pain, I had an appointment that afternoon in town, and I chose to walk to it. It was a mile round-trip walk, and I was dismayed at how much pain my legs, thighs and hips were in after said walk. This alarmed me, because just three weeks earlier, I had walked all over Cambridge, Salem and Boston, Massachusetts. The bulk of my pain then was foot- and calf-related, because I’d chosen the wrong footwear.

After my appointment on July 14, I went on to babysit for a friend around the block. That was low-key and doable, because the kid is a third-grader.

July 15 also found me in moderate low back pain, but I would not be denied a night of dancing. It had been three weeks since I’d been dancing (I danced a bit at my friend’s wedding), and I was itching to get out. Besides, it was another friend’s birthday celebration, so I wanted to meet her there. A night out and dancing was successful. :)

I rested on Saturday the 16th, and then we did the big 10km charity walk on the 17th. This is the walk we do every year. My husband and I have been team captains for three years now, ever since our friends nominated us for the position when they went off to raise pure-bred puppies for a second living.

Because my husband and I had so much going on this year, we did not devote enough energy to fundraising or team cheerleading, and as a result, we saw our lowest numbers for actual team members on the day of the walk (there were four of us total), and we did not raise enough interest to even print up the team shirts this year. Quite sad. Still, we made the best of the situation. So far, nearly $900 has been raised from our tiny team this year, and the final tally still isn’t in, yet.

Here’s a couple photos of us:

Doing the AIDS Walk, 2011

I brought my spare spoon to help me through the walk!

 
For the next four days after the walk, I was miserable. I had pulled every muscle from my hips down to my toes, and my feet and toes were blistered. I think this was the most injured I’ve felt from this charity walk. I don’t know what happened. I’ve been able to go hiking right after a cycle. This to me appeared no different. Meh. I guess I’ve just gotten very out of shape since surgery last December. I haven’t been good at bicycling or walking around town like I was before surgery. I have to change that.

On Thursday, July 21, I experienced moderate stabby pain - this would be a few days early for mittelschmerz, I think, but hey, who knows with me.

Today is Saturday and I’m helping my husband out at home. Next week I work as a head teacher for summer school. I am excited and terrified all at the same time. ;)

I’m happy to be back in uptime, and I need to get with the exercising, already. I have been doing stretches for the past two days, so that’s something at least.

I graduated from the Montessori teacher training center on June 24! Yay!

 
That night, my husband and I hopped on a plane to Boston, Massachusetts to see a friend get married.

 
We hung out in Cambridge, Boston and Salem for five days. We literally walked until my feet bled. Granted, I didn’t have the best shoes with me for the trip (a pair of dress shoes and a pair of combat boots being the only choices).
We flew back home on the 28th, arriving late at night.

I was home for roughly 30 hours before having to board another plane, this time without my husband, to go visit my family.

As you can guess, the timing worked out well for both the wedding and the visit to family, as I was between pain cycles.

I flew in to Detroit, stayed the night at my Ma’s house, and drove with her down to Kentucky for a family reunion, in which she reconnected with a bunch of her first cousins for the first time in 8 years (the last time being at her mother’s funeral). She connected with even more family she’d not seen in something like 45 years.
It was like pulling teeth to get my hermit mother to commit, but once finally there, she really enjoyed herself.

 
We stayed in Kentucky for two days, then drove back up to Michigan, where I dropped off my Ma and bolted for a friend’s house to enjoy a reprieve between family visits. I stayed two nights with my best friend, Heather, and her family.

 
After some R&R, I headed up north to see my dad. It’s the same amount of time driving as I had spent going to Kentucky with my Ma. She’s nearly 5 hours from her cousin’s family farm, and my dad is about 5 hours from my best friend’s house. All told, during my week-long stay in Michigan and Kentucky, I did just over a day and a half worth of driving.

 
The trip was necessary but exhausting. My folks aren’t gettin’ any younger, as my dad likes to say, so it’s important that I try to see them every year. I really need to figure out though how to do this again next year without nearly killin’ myself with exhaustion.

I got back on July 7 and spent two days severely jet-lagged and barely coherent. On July 9, the pre-menstrual cramps kicked in. George arrived this morning. So even though I’ve now had two surgeries, I still only get about two weeks of uptime each month before the pain.

The good news is that the pre-menstrual pain hits a day beforehand, rather than up to a week beforehand. The great news is that instead of 7 to 11 non-consecutive pain-free days each month, this time around I had, if I marked the calendar correctly, nearly 17 consecutive pain-free days!

The bad news is that once george arrived, the pain kicked in immediately, which is a turn for the worse compared to the past four or five months, when the pain was hitting me around Day 3 of my cycle.

Maybe it’s just this month, cuz of all the stress and travel, not to mention coffee and alcohol drinking. I dunno. There’s a saying in Michigan - one that I probably used to use all the time but have forgotten about since I no longer live there. It’s a fatalistic life view, which is part of the reason I left Michigan. The saying goes, “It is what it is.” Basically, no sense in trying to understand or change something - it is what it is.

I think it might be easier on my sanity if I just say ‘It is what it is’ regarding my illness, rather than always trying to rationalise the pain - rather than trying to find a common denominator in all of it - rather than figuring it out at all.

Endometriosis is what it is. I can’t do anything to not be in pain. It’s not my fault. I was born this way. It is what it is.

But I’ve never been one to just roll over and be all fatalist. That’s a whole other discussion I could go on for days about.

June 14, 2011: light cramping. Upper respiratory tract infection, thanks to a friend who attended a birthday party I went to. The coughing began on June 13 and worsened on the 14th.

June 15, 2011: moderate cramping. Went to work that day. Dealing with horrible upper respiratory tract infection.

June 16, 2011: george arrived. Went to work that day. Drugged on Tylenol 3 and Ibuprofen. It was setup week for Summer Session, so there were no children to have to look after. Since I’m supposed to be a head teacher for one week during the Summer Session, it was important that I be at work to help set up the classroom from the top down, and go over lesson plans and such so all the summer teachers would be on the same page. Dealing with horrible upper respiratory tract infection.

June 17, 2011: heaviest day. Went to work that day. Drugged on Tylenol 3 and Ibuprofen. Was pretty useless. Kept wanting to go home, but was too stubborn to do so. Dealing with horrible upper respiratory tract infection. Convinced at this point that it’s Whooping Cough. No health insurance to get looked at. They’d just tell me to ride it out, anyway.

June 18, 2011: Fed up with being ill and went out with husband to a monthly club night. It’s a low-key club to begin with, so it was no problem to be sitting and looking pretty with the others. I had some conversation with friends. It was alright, but I was severely exhausted from the pain and the meds. Dealing with horrible upper respiratory tract infection.

June 19, 2011: I felt well enough to go out to a Pirate Fair, which was happening by Mare Island. I knew that the ‘last gasp’ was going to happen, but I was so fed up with being in pain and being drugged, that when a break in the pain came, I went out for some fun.

The ‘last gasp’ occurred shortly after we arrived. We had walked probably one and a half blocks worth of shops at the fair, when I felt a trickle. I knew that once the bleeding resumed, the pain was not far behind. A few minutes after that, the nausea set in, and then the pain.
The other thing that sucked that day was the outside temperature. It was supposed to be in the low 80s, but ended up being over 90°F outside. I was in terrible pain, trying to pass huge clots, which elevated my body temperature, and so I was absolutely miserable. Here’s me sitting behind a jewelry booth in a spit of shade. Notice that I’m wearing a corset while trying to deal with this pain. Yeah yeah, I knew the pain would come and I still rebelled and wore a corset. How mean I am to myself, I know.

 
I took a half Tylenol 3 and Ibuprofen. Half an hour later, I took the other half Tylenol 3. I wandered around the fair in a daze. The heat was horrible - people of all ages were puking from heat exhaustion because there wasn’t enough water stations around and nobody thought it would get that hot outside.

Despite all of that hell, we came back from the fair, washed up, changed, and went out to dinner with my husband and his father for Father’s Day. The intense bleeding and pain had subsided, and I was spotting. The fatigue was still with me, and I was still dealing with the horrible upper respiratory tract infection.

I had residual coughing fits which lasted until around June 30th. There was bitter resentment at having gotten sick from a sick friend who attended a party or gathering - AGAIN - it happened twice within 12 months. I’m thinking too that it was the same person. There are two in our group who refuse to abstain from social events when they have a barking croupy cough. From now on I must remind myself that when they are sick, I will not go to the same events they are at, because they too easily give me their germs.

Oh - one last thing I just remembered: during the June cycle, I bled through every single one of my cloth pads. That has never happened before. Every last one of ‘em got bled through, even the thickest ones. I didn’t resume eating meat until towards the end of June, so I wonder if my anaemia was up because I hadn’t been eating meat. We’ll see, because I went back to eating chicken. Now I eat chicken and fish, but still no cow, pig, deer or other red meat per the geneva convention of endometriosis treatment.

Friday, January 21, 2011

I was still spotting. On Thursday night, I had set my alarm to wake after 8 hours sleep, to try to get back into the routine of waking to an alarm.

I woke between 2 and 3 am after a dream that Ms. Wendy, surrounded by her husband and her Ashram folks, had died. Her husband quietly proclaimed, “she has awakened.” The mood in the room was joyful, everyone was proud of Wendy for ascending. I felt this joy, but the moment I woke from the dream, I was filled with sadness. I was immediately aware of the idea of not letting go, of holding on to material things, including people. My husband happened to be up at that moment - he had come back from the bathroom and was climbing back into bed, so I told him about the dream and he held me. I was able to drift back to sleep.

When I woke for the day, I had breakfast, posted a memorial to my departed uncle and wished love to my family, and arranged to meet up with a friend at a local park. I wanted to ride my bicycle, but it’s behind a bunch of stuff in storage unit, so I got the bright idea to roller skate!

It was a 15 minute trek from my home to the park, so I put my skates on and tried it out. I only stopped for a few seconds before continuing on in my clunky, out of practice way. My arms flailed, my legs felt like Frankenstein walking.

About 2/3 the way to the park, I finally fell into my groove and skated more like a hockey player. I was still clunky but getting there. A nice, even asphalt street would have made things perfect for me; alas, the road was patchwork for most of the route to the park.

By the time I arrived at the park, I had used up most of my spoons. :(
I was tired and sore. My friend and her toddler showed up, and we hung out. I ran into two parents from the school I work at and chatted with them for a bit.

After hanging out at the park, I walked home, which took about half an hour. I was too exhausted and sore to put the skates back on.

When I got home, I ate some junk food, went to Costco with my husband for some school supplies, came home and endured a horrible sales transaction between a friend and a mental neighbor. I popped 1mg lorazepam to deal with it, and then my husband and I went off to cheap sushi to make it all better.

I came home, exhausted from all the exercise I’d gotten, and went to bed. However, it didn’t stop my husband from making eyes at me, LOL. Guess I wasn’t so tired after all!

Firsts: intimate with husband for first time since surgery.
Complication: dry. This never happens. Further exploration of this matter needed! ;)

Friday, January 14, 2011

Had a sad dream where I was in a stonemason’s shop, searching for my own headstone.

When I woke, I became alert to the fact that my pelvic pain had worsened overnight. The pain did not feel like post-op pain. It felt like my “usual” menstrual pain. My period was due on Monday, but because I had pelvic surgery 28 days ago, who knows…perhaps my period would be early or late. All the organs being fiddled with and such…

I called my surgeon’s office and my family doctor and asked if anyone had gotten my blood test results back, yet. My family doctor was the first one to call back with the info.
I was told that my red blood count was at 33 (low again) and that my liver count was normal at 42. However, my white cell eosinophil count was still high - it was 1,100!
I asked what I do next, and the doctor replied, “you go see your surgeon!” I asked if there was anything I should be doing in the meantime, should I go to E.R.? Am I contagious? The doctor replied she does not get to make recommendations, that this is on my surgeon. She said to just wash my hands thoroughly in case of contagion. So I called and left another message with the surgeon.

Flustered, I sat straight up on the couch to adjust my sitting position, and I screamed because I was hit with a sharp pain at the site of my pubic incision. It was a deep pain, not a surface pain. Maybe the pain was not in the incision itself but the same area where prior to surgery I would say “the pain was low in the uterus near the bladder”.

You know, I had been truly surprised when, right after surgery, my surgeon told me she had not found any endometriosis on the bladder reflection like my previous surgeon in 2007 had. My new surgeon said she found on evidence of endometriosis on or near the bladder or bowels. So all the pain I have is just radiating, then? It feels like it’s bladder pain but it’s really just a large aftershock of pain that had radiated out from the uterus?

I hate endometriosis so much.

After my screaming episode on Day 28 post-op, I whimpered and emotionally caved in to medication. I had barely been taking any medication at all, and had not taken ANY Tylenol 3, since December 27th when I was terrified I’d killed my liver.
But after the screaming pain, I caved in and took 400mg ibuprofen with a half a Tylenol 3.
Shortly thereafter, I went for walk with my husband because I was too stubborn to lay down and submit to the pain. I figured if I walked, that perhaps I would loosen up adhesions and such.

We walked 2 miles and stopped at grocery along the way!

Half-way through the walk, I had to sit down for about 15-20 minutes before hitting the store because the pain had ramped up in my lower back and my pelvis. It had made it difficult to continue putting one foot in front of the other. We sat at a bench and just hung out in the warm sun for a bit.

My husband

Me, sitting straight up cuz of the pain

A view of San Francisco and the smog...

Closer view of San Francisco in the smog

Alameda beach and Bay Farm peninsula in distance

Alameda beach and Bay Farm peninsula in distance

When I felt ready, we continued our walk and went towards the grocery store. As soon as we got to the store, my surgeon’s office called back. It was Dr. Wang, and she insisted that whatever infection is going on with me is NOT directly related to surgery. She suggested allergies or at worst, a parasite infection. She told me they do not specialise in this area, and that my family doctor has to see me. At that point, my family doctor called on the other line, so I took the call. She’d been briefed already and apologised to me for pushing back to the surgeon. I told her it’s okay, I think the surgeon is the one passing the buck, here. The family doctor said I’ll have to submit stool samples to rule out parasites. HOW THE HELL WOULD I HAVE GOTTEN A PARASITE INFECTION.

UGH.

Family doctor told me to stop in on Monday to pick up the collection tubes. I went back into the store to find my husband and finish our shopping.

When we got home, to my surprise, I had increased mobility! We made and ate dinner, but within two hours, the pain returned. I took another 400mg ibuprofen and another half Tylenol 3.

We spent the evening at a friend’s house playing card games - I could not sit in the provided hard chair because I kept getting sharp pelvic pains whenever I laughed or sat up straight. I was given a plush computer chair to sit in and that helped a bit, though I still had to get up and stand or walk around every half hour or less.

After game night, we came home, and I crawled into bed.

Firsts for today: Walked two miles despite having premenstrual pelvic and low back pain.

Complications: Sharp pains beginning in afternoon and lasting til evening whenever I laughed or sat upright.

Tuesday, January 11, 2011

I completely exhausted myself between Friday and Monday, and this was evident because on Tuesday, I slept all day. During my waking moments, I was depressed, because I’d discovered that my cat was still peeing on stuff. On Sunday, he’d peed on the bathroom rug. Sometime between Monday and Tuesday, he peed on my homework on the kitchen table. The last time he did this, I had to tear apart my entire Mathematics album and reassemble it (thank [insert deity here] for page protectors, but my handwritten notes were ruined, because they were the only things not in plastic page protectors).

Upon seeing that my cat had peed on my homework again, I broke down sobbing.
Thankfully, upon closer inspection, he’d only gotten the box of page protectors and the outside of my Language Arts album. I threw away some plastic pages and cleaned up the outside of the album, and cleared off and disinfected the table, all while sobbing. My husband stood near me, arm around my shoulders, the whole time. He had asked if he could help and I let out a muffled ‘no’ and continued cleaning. He knows me well enough to know that he was giving me all the support I needed by just being there with his arm around me.

And then, the old idiom, “when it rains, it pours”. I discovered that my surgeon’s assistant (not Skillern, but Wang, the more polite one) had left a voicemail for me about my December 28 blood work. You know, the blood work results that they didn’t bother to fetch from the front desk at my post op appointment on January 5th. The blood work that I had gotten a call about the day after my blood was drawn, saying everything was fine. That blood work.

I called the surgeon’s office back and played phone tag, and fretted. Finally, Dr. Wang called back again.

Turns out that AFTER my post-op visit on January 5, my surgeon decided to actually go and look at the report herself, rather than rely on the “ummm” and “uhhh” of the assistants and front desk people. Good call on her part - turns out they had missed something: abnormally large white blood cell count (eosinophils).
They had kept telling me everything was normal when I insisted it was not - even at my post-op appointment on January 5. HAH. This did NOT help my emotional state that day.
I quickly made an appointment with my local doctor as instructed by Dr. Wang. I was able to score an appointment for the next day, but less than 24 hours was even too long for me to wait at that point.

That day, I took 1mg Ativan, but still refused to take pain meds, even though my emotional meltdown set off instant cramps and fatigue. I can’t say enough how much stress and anxiety bring on and worsen endometriosis pain. Even though I have relaxation techniques and books and podcasts and MP3s on stress management, I still struggle with becoming master of my emotions.
Here’s a good article from an author I trust.

Complaints for Day 25:
My belly button still hurts.

Firsts for Day 25:
Did 10 slow stomach crunches and 10 sit-ups before bedtime:
Lying on my back, I put my legs in the air, bent at the knee. My hands rested on the sides of my body. I held the pose for as long as I could, and then I slowly extended my legs forward and back again, 10 times.

Sit-ups: I laid on my back with my legs bent, feet flat on the floor. I rested my hands on my thighs and sat up slowly until my hands touched my knees. Note: do not sit all the way up.

Sunday, January 9, 2011

It was my husband’s 40th birthday, and he had planned to go to breakfast and then wine tasting all day. I had recently gotten news that my car was leaking brake fluid, so the driving was left up to my husband - unless we rented a car for me to drive. Upon checking, none of the car rental places save for the airport were open on a Sunday. I was ready to pursue this angle, but commented that my husband would have to pay for the rental, since I’ve been out of work for almost a month.

His reply was that if it was okay with me, he’d like to take our chances with my car.

I was NOT happy. I protested. I grumbled. I caved in. I remained NOT HAPPY.

I drove him to breakfast, and two friends joined us. I was very delighted to be able to hold down leaded coffee with cream, a scramble consisting of home fries, tomatoes, spinach, green onions and cow’s milk cheese. I also had some sliced bananas to go with the almond-milk vanilla pudding I’d brought with me in the event that I could not eat anything on the menu. Quite a yummy brekkie I had!

The birthday boy surrounded by friends!

The birthday boy with friend and wife!

We sussed out wine tasting route and caravan plans, and off we went. On our way back to the car, my husband stepped in dog poop. To ensure his entire day was not ruined, I took the job of jovial and optimistic and helpful Wife. Sticking his boot in mud encased the poop for the short term, until he could address the issue later. Disaster averted, but ooops, we lost one of our caravan to impatience. We tried to warn her that the first winery was difficult to get to…

As expected, we and our friend who did follow behind us got to the winery with no sign of friend #2.
Good Wife phoned friend #2, who was in an agitated panic over being lost, and calmly guided her to me as I walked perhaps a third of a mile. Once retrieved, I hopped into her car and guided her to the parking lot, allowing her to vent in her red-headed way that I so often do myself (being a red head).
I was even able to convince her, after a few drinks, to join us in my car for further wine tasting. I got my exercise in for sure - getting into and out of my go-kart of a car all day and walking to and from wineries. I was moderately tired all day. The day was beautifully sunny, even though it was still very cold for me. The wind did not help matters. I do not thrive in 50°F weather. I’m comfortable in upper 60s to low 70s. That’s my range.

We didn’t die that day. No brake failure, which of course made me feel SUPER guilty for bailing on my teacher seminar the day before.

Firsts for Day 23:

• I drove my car all day, getting into and out of car repeatedly.
• My face and neck did not rash out with all the red wine and port I was trying, and I had not taken a Benadryl!

Complications:

• I experienced stabbing, searing bladder pain/urgency whenever my bladder was full. This was possibly due to sulfites in the wines I was tasting.
• I was still experiencing loose stool from the previous day’s coconut oil overdose.
• Since I am no longer in continual pain, I forget that there are things I still cannot do without causing pain; jumping, hip-checking car door or the front door to make sure it’s closed.

What I did for pain management was sit down often. I noticed that when standing at a bar, I stand to one side and sort of lean into the bar. Being post-op, this hurt a lot, and yet I could not stop myself from assuming that stance. So I would find a folding chair and sit down away from the bar. This meant I did not get the full range of wine tasting, but I rarely go for the whole range, anyway. I’m very partial to only certain reds.

January Birthday buddies wine tasting as I sit and rest.

After we got back into town and dropped our friend off at her car, we headed home to drop off some goodies my husband had purchased on our wine tasting trip, and then we went out to dinner. We were starving, and to my happy joy, there was something on the menu that I could eat - baked salmon with mashed potatoes and sautéed spinach! It was divine.

Birthday dinner with hubby at Speisekammer

The day ended on a sour note when we arrived home and I went to use the bathroom and stepped in cat pee. I began the usual line of questioning - was it because we had a friend over on Saturday who owns big dogs? Is my cat’s renal condition worsening? Was he mad at us for being gone for long stretches of time over the weekend? Does he have a bladder infection?
Alas. Only thing to do was to clean up the pee and monitor the cat’s behaviour again. Never a happy job. We’d gone weeks before he started up again. It’s always something different it seems.

Saturday, January 8, 2011

I have lost about 7lbs since surgery, because I was on the BRAT diet for an extended time due to continuing digestive tract issues after surgery. I am convinced these lingering issues are because my mesentery received blunt force trauma at time of surgery.

I think that part of my problem with bending forward and the pain kicking back up is because of the loose flesh from the weight drop. I tried wearing a back support belt in hopes of improving mobility, but all it served to do was irritate my abdominal muscles further.

It does not help the fact that I drank alcohol again the night previous, to the point of getting drunk. I did not black out, but this is the third time in a week that I had consumed alcohol. First it was just a few ounces on New Year’s Eve, then it was a glass and a half of wine and two or three drinks at the Tiki bar for a friend’s birthday, and then last night it was three strong vodka and 7-Up drinks at another friend’s birthday party. If the alcohol isn’t bad enough, I broke my “no corn syrup” rule with the 7-Up.

I was supposed to attend a teacher seminar but I was not feeling up for it, and I did not want to drive my car, because I’d just found out a few days earlier that it was leaking brake fluid. I’d taken the car in to get a low tire looked at - turns out there was a nail in the tire…AGAIN. And then they found the leaking brake fluid.

Anyway, I was not feeling up to going to the teacher event. I was really tired (likely due to being hungover), and I was melancholy because it was the death date of my cousin Andy, who died seven years ago in a fiery crash. I spent the day creating a photo memorial for my cousin, and continuing work on the first semester teacher self-evaluation, which apparently consists of 98735087435023948753 questions.

Diet-wise, I put myself back on the BRAT diet, because of the stupid hangover. Ugh.

Saturday night, my friend Elezar came over - he’d just flown in earlier that day for work, and so I told him to come join us for dinner. When my husband got home from an all-day gaming event with his friends, we all walked over to , where more friends greeted us. We gave my husband a very nice pre-birthday dinner party. To my absolute glee, I was able to stuff my face with sushi and not have any ill consequence. HOORAY for room in the gut finally returning! HOORAY for things healing up inside!

After dinner, we walked up the street to our favourite ice cream joint, and I tested the waters with some cow’s milk ice cream and two lactaid pills. Sadly, I still get stomach gurgles and had to pass a lot of gas. I didn’t have much hope that the lactose intolerance would have gone away with the so-called gastrointestinal reboot from surgery. :/

Once we finished our ice cream, we all parted ways, and I wanted to fall into bed after such a long day, but that was sadly not an option for me. See, it was my husband’s birthday weekend, and he had plans to go to see Rocky Horror Picture Show. Everybody else had bailed…and that left just me. So we went.

We stood in the near freezing cold for over a half an hour to get in the theatre. When I say near freezing cold, I mean it - it’s not just me being a whiny Californian. It was roughly 36°F outside, and I had on a knee-length skirt with stripey tights and Converse shoes, which have no proper insulation on the soles. I swear I thought my feet and toes were going to get frostbitten. They really did sting!

When we finally gained admittance to the theatre, it took another half hour before everything got started and all the show virgins were dealt with.
I was cold, uncomfortable, and tired. But I did remember a few lines and I did laugh several times, so it wasn’t all bad.

I cannot even remember what time we got home - I pretty much dove into bed and slept.

Medication-wise, I do not think I took any meds that day.

Exercise for that day - I will say shivering to death for most of the day counted, cuz seriously, I was starving again after the Rocky Horror show. I’d shivered so much that I’d burnt up all the calories!