I Will Not Suffer In Silence

During my July uptime, I spent part of a day helping my husband with the technical side of his website, which felt good because it reassured me that even though I’ve been out of the computer industry for the past four years, I still know enough Linux to get around. My husband uses WordPress for his blog (like I do for this blog). Making the blog look exactly how you want it to involves a bit of waving dead chickens over the evil php files. I prefer to use ssh and edit the files in vi, because I’m awesome.

Anyway, the same day, we got a replacement bed, since our Keetsa mattress failed us. Thankfully it is under warranty. A bit of housecleaning and mattress wrangling was required, so chalk that into the “exercise” category for the day, heh…

I also was a bad monkey in July. Our friends, whom we crossed the country to see all married back in June, came out to visit those who could not be their on their wedding day. We were fortunate to hook up with our newlywed friends the day before they were to jet back home. We went to the tiki bar and I got blotto. Ah well. I love to tiki.
I did penance the next few days after that by bicycling to and from work.

Speaking of work, that was the week I was telling you about! I was a head teacher, even with a hangover! Wooo! I’m totally badass. I survived the week perfectly, despite two parent issues I thought might become nasty. Parents are crazy. I say this not having once ounce of parenting experience in my body. :p

I celebrated the end of the week of teaching by meeting with a tattoo artist. I hope to get a back piece by Winter Break. :D
I had wanted the tattoo by the time of my birthday, but I did not manage my money well … again.
This will be my first ever tattoo! I have body piercings, but I’ve always been too afraid to commit to a tat. The thing is, I’ve had the same idea in my head for a back piece since the early 1990s. I think it’s about time I finally committed.

So I had a good time during July uptime. I was free of endometriosis pain for three days before mittelschmerz, which lasted only a day. Then I was pain-free again for nine whole days before I got a jabby lower back pain, and then I was pain-free for another whole day before the slide to downtime began.

The uptime was a total of 13 days, of which nine were consecutively pain-free.

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.

So what I’ve been doing is keeping a running log of tidbits from my day, thinking that later each day, I would expound further and make a good narrative journal entry for you. And then it wouldn’t happen. So the next day, I’d type up some tidbits from that day, hoping to put it in more readable narrative…etc. And what you get instead is me being way behind and playing catch up.

Day 45
Monday, January 31, 2011
Day 5 of my return to work. I don’t recall the order of the day. The big news that day happened when we got home and got a call from my husband’s step-mother, saying his dad was in the hospital again due to complications from Type II Diabetes. His left foot had swelled up, and he had to have his left big toe amputated. Now he has no more big toes. His right toe was amputated back in July, 2005.

My husband endured a long rant from his step-mother, and looked depressed when the call ended. He said, “I seriously wonder if he’ll be able to ever walk again after this.”

That’s not all - father’s wife is screaming divorce because she’s tired of him not taking care of himself. It’s been going on for over 20 years.

Day 46
Tuesday, February 1, 2011
Day 6 of my return to work. I wore slacks again, and no, the belly button wasn’t any happier - 46 days after surgery!!!

I was stressed out at work, and had little water intake because I forgot to take my water bottle to work with me, and it was my first day of recording the childrens’ work. Recording entails walking around the classroom with a clipboard and noting what the children are working on, checking their work with a Three Period Lesson, and noting on the clipboard next the activity whether the child has mastered it, needs to redo it, or is just having a sensorial experience with it.
The class usually has 20 children, and at any time, three or four of them are tapping me on the shoulder or arm while I sit with another child, or they’re calling out across the room when they’re not supposed to. Then there’s four to six children playing instead of working at any given time, whom I have to continually resettle. It was a very busy day.

That night, we visited my husband’s father in the hospital.
I experienced sharp ovarian pain on the right side as we walked down the corridor to my father-in-law’s hospital room - this was after climbing stairs - and I had just told my husband that I was fine to climb stairs, since I had been active at work.
It’s a workout to do Head, Shoulders Knees And Toes every day, along with squatting down and getting back up again several times a day to check children’s work…in Montessori, many children work with materials on the floor.

We visited probably for an hour, and my husband’s father seemed not to be too put out that he’d just lost his other big toe. He talked about the trip to Alaska he wants to take this year, and refused to discuss serious matters of his health - you know - reality.

When we got back home from visiting my father-in-law in the hospital, I mentioned online about my crazy mood swings I’ve been having since surgery, and an endo sister suggested I try taking Zomig. I don’t have any Zomig, but it does have the ingredient 5-HT in it. I took a 5-HTP supplement, instead.

Within an hour, my tummy was burning and nauseous, and I had moderate indigestion all the way up the esophagus.

Note to self: 5HTP contains sulfites and B vitamins. You know you can’t take B vitamins because it upsets your tummy.

I took a shower, and discovered that the first scab had fallen out. It looks burnt to a crisp, just like last time. My scabs didn’t fall out til around Day 61 last time.

Right before bed, I experienced sharp pain towards the left side - it was more uterine in nature this time.

So, now I have to go back on what I said in my last post - I had said I did not experience Mittelschmerz, but actually, I think it was just a bit late - Day 10 of the new cycle instead of Day 8.

Yeah. I still get Mittelschmerz. :(

Day 47
Wednesday, February 2, 2011
Day 7 of my return to work. It was my second day of recording the students as they worked, and I was still running around all frazzled, trying to keep up. No pain that I can remember - no notes about pain so I must have had a pain-free day!

Day 48
Thursday, February 3, 2011
Day 8 of my return back to work. We had Chinese New Year celebrations and only half an hour of work period, but I recorded what I could for the head teacher. I came home from a good day at work but the moment I got home, I was full of angst the likes I haven’t seen since I was in my early 20s.

I realised that it is because I am sick to death of LOOKING and DRESSING like a preschool teacher five days a week, and coming home every day with songs from The Wiggles or Dora or some such stuck in my head. I also realised I was PMSing.

Day 49
Friday, February 4, 2011
Day 9 of my return back to work. It was my last day shadowing the person who is leaving that room to work in the classroom I was moved from.

That night, I went dancing! I wore a corset! Sadly, no pix. My husband is really bad about that, and well he’s been depressed about his dad being in the hospital. That night, I blew out my right knee while dancing, and had to ice it right there in the club. The staff were FANTASTIC about coming to my aid - they didn’t have to do that but they did. To my fellow endo sisters, I know you understand when I say the blown out knee pain was HILARIOUS compared to what we normally go through. I iced it for a bit and went back dancing!

I must note for posterity that I did drink alcohol that night. Alcohol is known to be a bad actor for endometriosis, so it’s something I need to stop consuming. I struggle with this.

Day 50
Saturday, February 5, 2011
Sharp right knee pain. I got up after only 6 hours or so of sleep and went to have my blood drawn again (still dealing with follow-up to Dec. 28 high eosinophil crap). From there, I went over to a sports shop and bought another knee brace. ACE bandages don’t take care of the pain anymore - I have congenitally misaligned knees, so over the years, the pain has just gotten more annoying. Stretchy knee braces don’t take care of the pain anymore, either. So I bought a cool knee brace with hinges. It worked superb! I wore it all day and my knee felt SO MUCH BETTER by the end of the day!

And then the depressing news - I also experienced sharp pain on my left side - ovarian area - after eating breakfast (frozen mango, frozen banana, goat milk yoghurt, gluten-free vanilla extract, cardamom, cinnamon for a nice smoothie, and two gluten-free waffles with cream cheese).

Meh.

Day 51
Sunday, February 6, 2011
Intimacy with husband the night before resulted in pelvic pain that morning. We’re not doing anything fancy or kinky, mind you, and I’m still getting pain pretty much every time. I was told by my last surgeon that surgery won’t change that - I have dyspareunia and that’s just how it is. I had asked my current surgeon to please fix my retroverted uterus during the December surgery, as I’m convinced that it accounts for the dyspareunia and for some of the pelvic pain during menstruation, but she said there’s no easy fix to a life-long retroverted uterus. She said that the tendons or whatever it is that connects the uterus to the bladder and other organs would become to strained or weakened if she lifted the uterus up and clamped it into proper positioning. She said it would result in even more pain for me. I have to trust her on that, since she’s performed hundreds of surgeries for endometriosis and pelvic conditions. She’s probably seen the gamut.

The day started off great - I woke before the alarm, ate breakfast, showered, and went to my Alexander Technique class. The panic attack wanted to happen the moment I drove off towards the appointment.
WHY.
My hands were shaking. I couldn’t breathe. I felt the flutter in my throat. I took .5mg lorazepam on the way to class, and when I got out of my car, I thought for sure I was going to faint, so I took another .5mg lorazepam.
I got to my class and was the only one for a bit. I was honest with my instructor that I was not emotionally well grounded that day for some reason. Class began, and two more filtered in and joined the conversation - all of us regulars - all people I’m comfortable with. Then halfway through the class, a staff member opens the door and asks if a new patient could be admitted to class. This is where the session went downhill. This woman made the conversation all about her, and was verbally defiant and combative the entire time with the instructor. The other three of us may as well have ceased to exist. I began doing my breathing exerises. I dissociated and put myself into a fixed state, staring down my nose at the floor, just focusing on breathing so I would not have a panic attack and lash out at this horrible beastly woman who kept saying, “I can’t do this. I can’t do that. I want you to teach me how to properly sit so I can play flute and not be in pain. I can’t do what you are asking me to do. I want you to help me.”

Back and forth. UGH.

When the class ended, I bolted.

I got home and locked my keys in my car, I was so frazzled after that class. I mailed two bills by walking to the mailbox on the corner, came home, and my husband gave me a spare key to go get my keys out of my car.

I got back home and started sorting laundry. I left the room to go through my closet to double-check whether more clothes need to be pared down, came back to the living room, and saw my cat actively sniffing around on the laundry piles on the floor. This cat has a bad history of peeing on my stuff since November 2009 so my heart sank. I knelt down and began to go methodically through my clothes. I found four pair of underwear and a work shirt, all damp from my cat having just peed on them. WHY. WHY.

My husband guessed that perhaps we’re not keeping the litter box clean enough again. This was all I could take for the day, and I feel immediately into a black depression. My posture slumped. My face fell. My eyes glazed over. It was 72F outside for an unseasonably warm February weekend, and emotionally, I was not up to it.

After I threw away the underwear and shirt, I bagged up the remaining laundry and took it out back to the laundry room. Then I took some crocheted blankets (two are from a thrift store, and one is from a friend) to the laundrymat because I like the front loader machines better for such delicate washing. I tossed in some scarves and my Dickens Fair skirt I had made in 2009 and had worn again in 2010.

When I returned to the laundrymat to retrieve my items, I found that everything reeked of mothball.

WHY!   WHAT THE HELL!   HOW DID THIS HAPPEN?   Was it one of the thrift blankets? Was it the washer I chose?
I hung up all my items when I got home. Airing out was good enough for most of the items, but a scarf and a thrift store blanket still reeked horribly, so I washed them twice by hand with baking soda, vinegar and oxobrite cleaner.

I had already been deeply depressed over my cat peeing on my stuff again, and then the mothball chemical assault happened. I’ve refused to eat or do homework all day. I did another load of laundry here at the house, but that was it. Even as I sat here typing this out, I was hunched over. My stomach was hurting. I wanted to sleep. I wanted to just go away.

8:19pm update:
I think I got the mothball smell out of everything except for our tartan scarf. :( I’ll keep trying at that before giving up, though.
There are two culprits now - the green crocheted blanket I got from the thrift store, and the purple microfiber blanket I just bought from the neighbor last night. Two different smells at that! The green one is the mothball and the purple one smells like a dog or cat had urinated on it at some point and it was incorrectly washed and dried. This makes a good argument for me never getting thrift store or yard sale blankets ever again.
I’m wondering how sick I’ll become now that I’ve exposed myself to nasty mothball fumes all day. One day I’ll learn to just flee the situation or throw the offending items away instead of trying to save things. ugh.

Day 52
Monday, February 7, 2011
Continued pelvic pain from late Saturday night’s intimacy.
Lots of intestinal gas noises, and pressure on the low back extending to rectum. This is “normal” pre-menstrual activity. Alas.
I awoke around 4am and finally got up to use the bathroom around 4:30am. I took .5mg lorazepam. I was never able to get back to true sleep after that. I hit snooze on the alarm four times, being stubborn about getting out of bed. I was exhausted and I still had a whole day ahead of me.

I got through the day but had to take 600mg Ibuprofen gel-caps by 9am to get through the day, because of low uterine pain. I seriously had to go check to see if I’d started bleeding, the cramps were strong enough. I’d wager about a 4 on the pain scale.

Postscript:
My first surgery was February 1, 2007 and I never did get any pain relief from that surgery. That’s why I had the second surgery on December 17, 2010. Both surgeries were electrocoagulation type Laparoscopy. I wanted excision surgery this time around, but my surgeon told me that the latest research out there shows that both excision and electrocoagulation have benefit. She prefers electrocoagulation but will not hesitate to do excision where necessary. The bulk of what I ended up “needing” was electrocoagulation, according to my 2010 surgery report.

I am hoping that with each month post-op, the pain relief will increase. That’s where I’m at…

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! ;)

Saturday, January 15, 2011

Woke up feeling better, though my face was flushed like fever and my temp was 99.3F.
I enjoyed decaf coffee with my breakfast of gluten free waffles and coconut milk ice cream. I had a second breakfast of pan-fried onions, spinach, broccoli and mushrooms with cow’s milk cheese all stuffed into a brown rice tortilla quesadilla.

I was able to accomplish some light house cleaning & purging, and found a pile of socks and other clothes that need darning. I can’t remember what ended up distracting me from the sewing, but other stuff happened that day…

At one point an Internet friend’s comments on my blog led me to worry, so I asked her if she was alright since her surgery. She’s got endo and she’s pregnant. Some women have undergone surgery while pregnant but red flags went off for me over the lack of updates on her site since before surgery. She wrote back to me, confirming the worst - she had to lose the baby during surgery because her own life was in danger. She was about three months pregnant. I actually cried upon receipt of this news. It was the second time in a month that a friend had lost their baby. Earlier in the month, on the same day as my post-op appointment (January 5), a friend had lost her newborn. She thinks it was SIDS. She is still awaiting the autopsy report. I cried for her, also. She had fought so hard to even conceive, and then was in pain and bedridden through most of her pregnancy. Her baby was born tiny and fragile on December 23, 2010, but the hospital sent her home the very next day. I do not know why the hospital did not keep the baby for observation, or send the baby home with a breathing machine, or what. I just don’t have all the info, and I’m feeling a whole lot of IT’S NOT FAIR for my friend. For both of my friends.

Call it oversensitivity since surgery (my ovaries were mucked with, which causes hormonal upset), or call it PMS. Call it whatever - I’m hugely empathetic and emotional right now, and seeing others suffering physically and emotionally just registers so much more intensely than usual for me.

Saturday night, we went dancing. I had been looking forward to it all week, to test out my mobility again, and because I knew there’d be a lot of swirly music to dance to.
Sadly, no photos from that night - I simply forgot. Well, there is my Daily Mugshot photo:

Going out to dance at Solace

I had been melancholy all day for my two friends, and was listening to a lot of Dead Can Dance and music I used to perform ritual to, so that I could send love and positive energy out to my two friends. I wasn’t even sure of my own mobility, but I knew I would at least request and dance to Cantara by Dead Can Dance.

And I did.

By the end of the night, I was on Tylenol 3 and Ibuprofen, but it was worth it. I also got to see another chronically ill friend that night - she has fibromyalgia and was having a low-pain day and also decided to make the most of it and go out that night. She danced, too. :)

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.

Monday, January 10, 2011

4:19am: “WHY am I awake”.

I wondered if it was because I had drank alcohol throughout the day on Sunday. We had gone wine tasting for my husband’s birthday.

“My legs are bouncing and my brain is spinning and my stomach is gurgling and my heart feels like it is pounding, even though my pulse is normal. I need to be “sleeping with prince valium” I think.” - Monday at 5:11am

I took 1mg Ativan and went back to bed at 5:30am and slept til after 11am. I woke groggy, of course.

So it was Monday, the start of another work week, and I was still home recovering from surgery. The week off was approved long ago, but I felt guilty for being out of work anyway, because I had not been in constant pain for over a week at that point.

Simple movements were still painful, and I was still easily fatigued, so I reluctantly adhered to the 6-week recovery recommendation from my surgeon. I didn’t want to irritate my surgical wounds by going back to work too soon, since preschoolers have no concept of restraint when it comes to their physical activity.

I spent Monday finishing the first semester self review for work, and I emailed it off to my director at school.

Monday night, we went out to dinner with my husband’s father and step-mother. It was quaint. I had more alcohol to drink. Why have I been drinking so much alcohol? I have blatantly violated my post-op rules to myself! Why is my will so weak?

After dinner, my husband, still on a birthday high, wanted to go out to our favourite nightclub. What the heck, we’re both off work, right? Why not? I was zombified but my hubby really wanted to go, and he hadn’t arranged for any other buddies to join him. So I went. I thought, “Hey, at least I can practice my stair climbing!”
I took .5mg Ativan before going out, because my nerves and guilt ramped up. Anytime I’ve done something enjoyable during my time off work for surgery recovery, I have felt guilty about it, as though I’m somehow cheating the system or playing hooky on purpose from work. It’s pretty lame that I am capable of so much guilt.

Once we were at the club, my mood elevated. It was good to be among my people again! I was all dressed up and the music and scenery were sweet heaven on my ears and eyes. Because I had been active and out and about all weekend, I decided to take the plunge that night. I danced!

Of course, I overdid it, and before long, I was holding my stomach and breathing rapidly in panicked fashion because of the abdominal cramps that I’d set off. But I refused to take my medication. I’d been too afraid to take Tylenol 3 since December 27th, when I had the “oh crap I’ve killed my liver” scare.

I drank a lot of water that night, and crawled into bed, whimpering, as soon as we got home.

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!