Second Laparoscopy: Day 45 – 52

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’m nearly two months post-op now, and I am just getting back into my regular old mobility mode. I’m due for a period on February 11, so we’ll see if the pain comes back or what. I have been experiencing symptoms (alternating ovarian stabbing pain), and I still have the pain with sex (but I’m told that’s a different diagnosis altogether – dyspareunia).

For medication, my cocktail is Tylenol 3 and Ibuprofen gel-caps. I have tried all the NSAIDs, I have tried opiates and narcotics all the way up to Dilaudid and back again. I have tried medical marijuana. The only thing that helps dull the pain with minimal side effects to me is the Tylenol 3 and Ibuprofen.

For pain management, there is yoga, and also the Alexander Technique. I like bicycling, dancing and roller skating, but I cannot do these things when the pain hits.

I went back to not eating pork, beef and other red meats, as well as fowl. I’m vegetarian plus fish, now, though I also omit crustaceans because they are said to set off the pain, too, and in my case, it held true. :/

I have a whole list of foods I avoid on my No Fly List, and then there’s the vitamins and supplements list.

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

Second Laparoscopy: Day 36 to 44

This is going to be a long journal entry, possibly with fragmented notes, because I am getting tired of trying to make time for translating my raw notes into narrative and posting one day at a time. ;)

Before I get into the rough notes running log of recovery time, I have to note that four mantras have had to be repeated to myself during this surgery’s recovery:

  • This surgery recovery could not possibly track exactly as last time, because this time my mesentery was bumped with surgical instruments, and I also received a fourth incision.
  • This surgery recovery could not possibly track exactly as last time, because I got my period on time five days after surgery.
  • This surgery recovery could not possibly track exactly as last time, because last time, I was put on Yasmin two weeks into my recovery time.
  • This surgery recovery could not possibly track exactly as last time, because last time, I did not have endometriomas on both ovaries.

Keeping all that in mind was/is difficult, and I have often been impatient during this recovery.

And now, the running log….

Day 36
Saturday, January 22, 2011

I feel like my old self again after my period. The period still felt as painful as it always is, but it’s only a month post-op. I HAVE to keep thinking that once I’m all healed up inside, that the surgery will have provided benefit.
I had Thai food for dinner. Mmmmmm!

I had phoned one of my head teachers on Thursday to set up a meeting with them on re-entering the class next week, and was told she and the other teacher would do a conference call with me on Friday.

On Friday, I got a voicemail saying I need to talk to the Director if I have any questions. Whaaa?

So today I called the Director at home and she reminded me that I’ll be moved to a different classroom when I return to work. I told her that she and my intern supervisor had been bantering the idea around, but I had no idea it was official, now. She sounded incredulous that I would not remember. I was incredulous that she was incredulous, because I’m sure there was never an official say-so to me. It was all phone convo, so no proof for either side of the story.

Further, I was asked if I had my release for return to work signed by my physician. Whaaa?
I replied that I had submitted my time-off request back in October or November, and that should have taken care of everything. I was told nope, I need to have a signed release from my doctor before I can return to work. I panicked inside – it was Saturday afternoon – my regular doc and surgeon were not in the office, so there was no way I’d be returning to work on Monday!! I let the director know this, and she said to just get the note in as soon as I can, then.

Oh well, extra day off work, I guess. :/

Day 37
Sunday, January 23, 2011

8pm: Whoa. The director of the school I work for just called and said not to come in tomorrow and possibly this week at all cuz there’s a nasty bug going around! She’s out sick with barely a voice, and so is my head teacher! Gonna check back tomorrow afternoon, hopefully will have my lab results by then, too.

10pm: Just made Budwig Butter(TM), and now I’m grinding seeds – all to have ready-to-eat now that I’ll be going back to work after a month off. Time to get serious about the dietary changes I promised I’d adhere to after surgery! For one, I’ve been pesco-vegetarian for nearly a month!

Day 38
Monday, January 24, 2011

Got up at 6:30am, ate breakfast, prepared lunch bag, put internship binder into bike bag with lunch and my med kit, finished getting dressed and doing hair, and walked out the door. Test run to see if I can walk to work and back.
Results: it’s a mile walk each way, carrying a 12lb bicycle saddle bag which converts to an open shoulder bag. I was exhausted when I got to my destination, and was glad I didn’t actually have to report to work this morning.

9:08am
This just in: I’m seriously frustrated. A certain someone went back on their words and insisted they never said what they said. I’m totally going to tape every conversation from now on. I was just lectured that I was never told not to come in to work. I can’t come in anyway, I still don’t have the release notes from my doctor and surgeon. SO frustrated. Anxiety level super high right now.

I ended up spending the rest of Day 38 in bed, and had a crying spell in between long naps. I think the children’s Benadryl that I had taken that morning was partially responsible for making me so tired and moody to the point of crying. The other thing was having walked so far with the 12lb bag on my shoulder. I used to take children’s Benadryl every day before work because of how allergy-ridden the place is for me, and because I had some notion in my head that it would help ward against the chemical onslaught of perfumed children, staff and parents.

Day 39
Tuesday, January 25, 2011

First day back to work!! I was bumrushed by a few of my young fan club. :)
I have a new addition to my fan club! His name is Justice and he’s 3 years old. He followed me everywhere after I defended his right to have a next turn during a playground ball game. :)

When I got home from work, I discovered that my co-worker Ms. Wendy had written an update about her life celebration last week, and published it today:

I tried hard to stay here through the celebration. I wound myself up. Now, turning within seems more challenging. I love my life and everyone in it. Part of this process for me is letting go of those closest to me.

I remembered I have the habit of giving to everyone I meet, but I forget to give to myself all the things I need. Giving and nurturing to myself is really more easily said then done.

There is also a great tiredness deep within calling me to rest…I do not need to struggle anymore for anything…At this time the needs are simple-silence, meditation, chanting, contemplation, and study. My friends and family all wish me success in my goal to let it all go.

Reminds me of my dream and how I am having trouble letting go.

Day 40
Wednesday, January 26, 2011

Day 2 of my return to work. More children in my little fan club coming up to greet me.
There was gossip from a co-worker about my being moved to another class, thus displacing an assistant who’s already been in there since the start of the school year. How annoying that this person has to gossip to me, and how irritating that I have to be moved mid-year like this. I popped a couple of .5mg lorazepam that day to deal with re-entry to work (to a new room) and to deal with the gossiping co-worker. It’s the same person I’ve had a personality conflict with forever.

Day 41
Thursday, January 27, 2011

Day 3 return to work. I wore slacks this time because I was already tired of wearing skirts. This was a bad idea, as the belly button was highly irritated all day. I experienced pelvic pain and low & mid back pain all day.
The same co-worker as the day before was still at the gossip on this day, and it really got to me, so I told her I would confront the person I am displacing and see if she really is inconsolable over the fact that I was moved into her room. As we set up the room for naptime, I apologised to my co-worker for being moved into her room and displacing her. I told her I did not push for this move, that it was the decision of the director. She told me it’s alright – she said it’s time she learns the more administrative side of running a school, anyway, and that she’ll be working a bit in the office as well as in the room I came from. She’s gone through all the training and has her Montessori head teacher certificate. She just needs a head teacher position to open up for her, now.

By the time I got home from work, I was thoroughly exhausted and still having a bit of pain. I wanted to go to sleep and also eat dinner simultaneously. Much whining abounded. I settled on gluten-free freezer mac ‘n cheese, and some gluten-free chocolate cake for dessert, then went directly to bed – at 6pm. I woke at 8pm and half an hour later, I went out to the local German bar with my husband to help a friend celebrate her birthday. I thought I would fall asleep in my chair, I swear. I was back in bed by 10:30pm after having only had an elderflower soda to drink at the bar.

Day 42
Friday, January 28, 2011

Day 4 return to work. Endured parent-teacher conferences today. I was there as an intern to observe the process. I was traumatised by only one parent! I popped one .5mg lorazepam that day and straddled world of assistant and intern again. I had high energy but it ended up hurting me because I was too enthusiastic while doing “Head, Shoulders, Knees and Toes” with the kids.
There was a crazy parent for a conference at the end of the day – she’s the one who traumatised me (and my head teacher). I came home, popped 1mg lorazepam, and demanded a sushi dinner with my husband. Then I got coffee because I was so exhausted and refused to go to sleep before midnight on a Friday night. It worked – we hung out in a book store for a bit after dinner, then came home and stayed up til 3am with my hubby, watching TV!

Day 43
Saturday, January 29, 2011

Blissful sleeping in!
However, the day did not stay blissful for long. I found myself depressed and crying before my husband even woke up. After analysing the situation, I realised much of it is that I need to be ME again, and after only 4 days back to work, I’m already sick to death of wearing the Mary Poppins monkey suit. My husband was happy to help remedy the situation with clothes shopping!!! I got a new dress and a new skirt at local shop. My hubby drove us to Berkeley but the store there was rude and overpriced, so did not get my money. We hit up a bookstore before coming back home – I bought a used book called Indian Removal, by Grant Foreman (I have always been very passionate about the Native American plight). When we came home, I was exhausted and took a nap. When I woke, I made mac ‘n cheese for dinner, but only after forcing myself to think of something to make for dinner, and then I had to force myself to eat. I was still depressed. Later on that evening, we attended an independent film festival for a friend’s film, and had a good time. We came home and I went directly to bed.

Day 44
Sunday, January 30, 2011

Finally resumed Alexander Technique classes at the local dispensary today. Ow, practice hurts. Also did laundry & dishes, & took nap in between. Still tired as hell. Slowly getting back into the swing of daily life – it usually takes a few months.
In the TMI department, my husband and I were intimate before I headed off to class. During class, I suddenly experienced sharp anal pain, then sharp left side ovarian stabby pain. Ahhh, Dyspareunia, how I hate you.
The wife of the instructor held me after class for an hour talking at me, in my personal space, and told me not to say MY illness, and told me not to BE the illness. I’ve heard it all before. I was so annoyed. I came home, did 2 loads laundry, attended the grand reopening of a local store & bought a cute bracelet. All day, I had intermittent low back pain and cramping – again I attributed it to intimacy earlier in the day.
I did some dishes, bills, and made dinner, cleaned out the wonder washer, put new linens on bed, and planned to shower, but that’s when I ran out of spoons. I went to bed.
I certainly am not knocking the amount of spoons I had that day, though!!!

Special note: I did not experience Mittelschmerz this month!! :D

Second Laparoscopy: Day 35 post-op

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! ;)

Second Laparoscopy: Day 34 post-op

Thursday, January 20, 2011

I woke with moderate to heavy bleeding and cramps, but by late morning it died down. Alas my life is not stress-free right now. My male cat Kiki keeps soaking the wall by the front door, for the past few days. We clean it up with “Anti-Icky Poo” but it seems to only encourage him to urinate with more volume. We plugged the Feliway back into the wall for round 3 of pheromone therapy and took Kiki to the vet for another eval.

I had moderate to heavy bleeding and cramps ramp up while running cat-related errands around 1pm, lasting til about 3pm. I took half a Tylenol 3 and 400mg Ibuprofen.

By 5pm we got great news that Kiki’s urinalysis came back already, and he has no further descent into renal failure, no elevated white cell count, no diabetes! So health-wise, he’s totally stable. The peeing is behavioural only, which of course is another fun trip. He’s gonna be 15 in March – he’s an old man. We’ll keep doing what we can.

The pain and bleeding had settled down again until I ate mashed potatoes and creamed spinach for dinner at around 6pm; then I got plugged ears, headache, cramps, bleeding once more. I must be allergic to something in the Trader Joe’s freezer creamed spinach. Since allergic reactions are immune responses, it’s no wonder the endometriosis flared again, since it too is an autoimmune disease. I took half a Tylenol 3 and 400mg Ibuprofen at 7pm.

Second Laparoscopy: Day 33 post-op

Wednesday, January 19, 2011

Just before a bowel movement, I took 600mg ibuprofen. The pain was worse right before the bowel movement, and settled down after.

Throughout the day, I was able to be up and out of bed.

That day, my chosen sister’s husband phoned me to tell me that my sister had lost her baby. She was nine weeks pregnant, and less than a week earlier had announced it to everyone. I broke down and cried.
So January 5, January 15 and January 19, people I know lost their babies, all for different health-related reasons, at different stages (two in utero, one newborn). Two are endo sisters. The third is my chosen sister, who does not have endo, but who is RH positive and has had to take RhoGAM shots during each pregnancy. Her doctor assured her the RH factor likely had nothing to do with it, and that she did nothing wrong – just that sometimes development just stops. But of course she’s devastated. Three women I care about have been basket cases this past month for good reason, and then there’s my dying co-worker. I really have cried a lot this month for people.

I worked on homework on Day 33, sitting at the kitchen table on a hard wooden chair. Around
5:40pm, a migraine set in. I am not prone to migraines, but this past week I had been back on narcotics (Tylenol 3) for menstrual pain, so perhaps that is what kicked up the migraine.

I had to stop my homework because I had developed light sensitivity on top of the crushing head pain. A shower did not help. A heating pad to my face and head did not help. Shut-eye in a dark room with a heating pad over my eyes did not help. An endo sister suggested I try Zomig so I looked it up. I took 5-HTP instead, because I had it on hand, and it contains 5-HT. Similar enough, why not?

That damned migraine lasted until I drank caffeinated Irish tea and put a cold pack on my neck (thanks to endo sister Lhia-Clare!). At that point, the migraine downgraded to headache. It was 9:10pm – the migraine had lasted three and a half hours. Ouch.

At 10:30pm my husband massaged me, centering mostly on my upper back while I lay on my stomach.

Forty minutes later, at 11:10pm, I guessed I was having what we call my “last gasp” – a bloody spurt and lots of blood clots and pelvic pain, along with low back pain. I took a whole Tylenol 3 pill, applied multiple heating pads, and went to bed whimpering.

Second Laparoscopy: Day 31 and 32 post-op

Day 31 Post-op
Monday, January 17, 2011

First day of george. Dark brown and thick w/ some debris and clots. Took 1/2 Tylenol 3 and 2 Ibuprofen (400mg). Then an hour later I had to take another 1/2 Tylenol 3. I was stoned for much of the day. Had to lay down for much of the day. I wasn’t totally bedridden, but I was super stoned and tired.

The pain is same as it ever was, but now I’m also experiencing a painful pubic incision; it feels like the bleeding is going to come right through the incision. UGH.

I must stay positive & give it a bit more time – see if things even out.

Day 32 Post-op
Tuesday, January 18, 2011

Second day of george. Woke and took 1/2 Tylenol 3 and 400mg Ibuprofen. Then an hour later I took another 1/2 Tylenol 3. Another stoned day. At least my tolerance levels went way back down, and I have more mobility such that I don’t have to take 2 at a time every three hours like I did after surgery.

Again, the pain is the same as it ever was. The heavy bleeding is the same as it ever was. Today the colour went from dark brown to dark red. It’s still thick. I have more clots today.

At 11am state disability called. Apparently the assistant surgeon (Skillern) screwed up my disability forms! He didn’t say how but the guy sighed a lot. Still no pay for the foreseeable future! Thanks, Dr. Skillern! Hate you! This is the same assistant who was always demeaning and rude. I want to set her car on fire.

Today I did nothing all day. I was fully bedridden all day. I am really not okay with this. I’m so impatient to be healed up and for the surgery to have ‘worked’.

When my husband got home from a day of gaming with friends (he’s still unemployed), he ordered Indian dinner for us. I went to the couch and sat down to eat with my husband (I had Saag Paneer). While eating, my male cat backed up against the wall by the door and peed all over the wall!!! It of course totally ruined our night. Adrenaline kicked in and I got up improperly (not watching my body movements to be gentle on myself), I scooped up the cat, we shoved his face in the urine soaked wall, and I put him in the shower and closed the shower doors. I then cleaned up the piss and went all over the house bending over and stooping down and looking for more piss. There wasn’t any more that we could detect.

I swear it was an hour later when the adrenaline wore off, and I got insanely tired.

But I did not want to be tired, so I stood up and walked around the house. This of course kicked up the cramps. OF COURSE. At that point, I took a full Tylenol 3 pill and back to bed.

From bed, I wrote an article for my website, so at least I can say I did something today.

Second Laparoscopy: Day 30 post-op

Sunday, January 16, 2011

I would like to share a life profile about a co-worker, but first, I need to provide you with background:

In September, 2009, I began working my first school year as a co-teacher in the new Outdoor Classroom. I was also enrolled in a college-level intensive teacher training class for “Practical Life” curriculum every other Saturday. From the moment I began the Fall Semester, I began to get chronically sick. I fought upper respiratory infection after infection, which turned into a full on lung infection by February. It was hard to pin-point at first what the cause of my illness was, because in August I had gotten new foam pillows and a foam bed, gotten my home sprayed (on the inside) to take care of massive ant invasions (they were even coming up through the foundation!), and I had started working outside five days a week. I was by this time using an inhaler for the first time in my life. My doctor decided to pull me from the Outdoor Classroom and said I had to work indoors for three months, to see if my lung infection cleared up. (It did – so the result is that the outdoor classroom is toxic to me).

But that is only the background info – here is the real story I want to share:

At the beginning of March, 2010, I was placed in Ms. Wendy’s 1st & 2nd grade classroom while she was on a three-month leave of absense for a medical reason, which at that time, was not publicly available.

Wendy’s co-teacher Janelle became the head teacher, and I became the assistant. While working in Ms. Wendy’s room, I kept in email contact with her. At one point, I wrote back to her to let her know I had to go home early because of endometriosis pain.
Wendy wrote back to me, saying, “I know how painful it can be. I had it in my twenties and had the laparoscopy. I went on a wheat, dairy and sugar free diet for 6-12 months and that did it for me.”

This was the second teacher in my school to let me know that she had battled endometriosis. The first teacher, Ms. Kim, who worked in one of the pre-kindergarten classrooms, was diagnosed during laparoscopic surgery for fibroids if I remember correctly. She told me that up til that point, she never even knew she had endo, because she was never in the kind of pain that I exhibit. She said apparently she has a bad case of endo, but it doesn’t bother her. She didn’t even know that the stuff grows back after surgery.

So I am teacher #3 with endometriosis in that school – and two out of three said they either manage it well or are not symptomatic.

I began to wonder about Ms. Wendy’s condition, though. She had managed her endometriosis, but what else was going on? Nobody would tell me.

In May, 2010, Wendy returned to her classroom – frail but determined. She looked like she’d been run through chemotherapy, and her fingertips were often blue and cracking.
I finished out the school year as a floater and substitute assistant teacher.

Over the summer, I did not see Wendy for two reasons – not all head teachers wish to work in the summer months, although all employees get the option to work summer daycare classes if they want to, and I had also taken the summer off to finish up the teacher training courses that I had begun in August, 2009.

When we all returned to school for the Autumn 2010 school year, Ms. Wendy had taken a position as head teacher for the 3rd/4th/5th grade classroom, and I was assigned to one of the pre-kindergarten rooms. Every year it seems, teachers can be moved around to gain the widest possible experience (Ms. Janelle stayed on as the 1st/2nd grade teacher, and Ms. Kim took the Kindergarten head teaching position)

By November, however, Ms. Wendy’s health had faltered again, and she once again went on medical leave. It was at this point that the mood of the whole school administration could be easily read – Ms. Wendy was dying. Although information about her condition was still kept secret, rumours leaked that Wendy had in fact battled cancer.

On Tuesday, November 9, while I and another co-worker were enjoying lunch in the break room, the financial director walked in and was teary-eyed. I asked her could she please tell us what is going on with Wendy. She informed us that Wendy came back for a visit, and that this would be our last chance to see her, and that she had chosen not to take any further medical treatments. It came to light that yes, Wendy had cancer, but that was a long time ago. The financial director didn’t know or didn’t want to say any more than that. So we turned to the secretary, who told us that Wendy has something going on with her lungs, that it’s not cancer, but that it is terminal, because she’s chosen not to continue treatment. My co-worker, who I’d been eating lunch with, just lost it at that point as tears ran from her eyes. She sat silently but said she didn’t know if she could compose herself in time to go say goodbye to Ms. Wendy. I gave her a few minutes. This co-worker had grown up in that school and had had Ms. Wendy as a teacher. Incidentally, Ms. Kim, who also has endometriosis, is this co-worker’s mother.

After she composed herself, we walked across the street to the auxilliary classroom to find Wendy exiting the building. We caught her just in time to give gentle hugs and say goodbye. Ms. Wendy asked me how I was doing with my condition. I told her I would be having surgery the next month and that hopefully I would see beneficial results like she had. I told her we are fighters. She smiled, and we watched her get into the car with her family and support network, and drive off.

After that, the school secretary told me without my prompting about an online community that Wendy had organised for people who want to send love and good thoughts to her. Two days later, the secretary emailed me the link, and I sent a request to join. I was approved the same day.

The same day as my surgery, on December 17, 2010, an email went out to the parents of the school, and all of the school staff was copied on the email:

December 17, 2010
Dear Elementary Parents.

It is with great sadness that we have some news to share with you.

We are giving you an update on Ms. Wendy’s condition. Wendy recently informed us that she is now under hospice care for the terminal condition, Pulmonary Hypertension with complications. This means that the constriction of her blood vessels has become a strain on her heart.

So I finally learned what the deal was – the thing that is taking her down is called Pulmonary Hypertension. That explains why her fingers are always blue, and I guess explains how skeletal she’s become.

By being part of Wendy’s online community, that’s how I was invited to a beautiful celebration of life ceremony on Day 30 post-op, Sunday, January 16, 2011.

I had already had an emotional day on January 15, dealing with the loss of babies from two endo sisters. I had spent that day listening to Dead Can Dance and Lisa Gerrard, and the album Duality by Lisa Gerrard stuck in my head and made perfect sense for me to give to Wendy. So before we left to go see Wendy, I burned a copy of the Duality album to gift Wendy with.

My husband drove me because my car’s brakes are in bad shape. I was also cramping because my period was due the next day. I had called my doctor the previous day and asked about my high eosinophil white cell count – I wanted to make sure I was not highly contagious or anything like that. My doctor told me to just wash my hands really well, and that if I were contagious, it would be through contact with my hands. I must have washed my hands five times while at Wendy’s life celebration, because I had repeatedly mopped my eyes and nose. I tried to keep from crying, but the beautiful things that people said to Wendy, who sat at the front of the room in a wheelchair with her husband next to her – it just moved me to tears.

During the two hour event, chanting, thankfulness and love filled the room. We did meditations, and I sent out a blanket of love to enfold the entire room. Literal hearts popping in the air above the blanket of love. It was a very powerful group meditation.
The people who had organised Wendy’s life celebration had printed out lyrics to the chants, and that’s how I found out that Wendy’s belief system is through her Siddha Yoga family. According to wikipedia, “Siddha Yoga is a spiritual path (or new religious movement) based on the Hindu spiritual traditions of Vedanta and Kashmir Shaivism.”

When I was in college, I studied world religions, trying to find a new spiritual path for myself. I remember studying Hindu, and it almost gelled for me, but not quite. Then I discovered Buddhism, and it clicked with me in a way that Hinduism could not. I was seeking to get away from the idea of monotheism or an ultimate creator, and Buddhism allowed that for me, and still does. I became attached to Tibetan Buddhism in 1995, and have always held that close to my heart, even when for years I was a practicing Wiccan, then in general a Pagan.

To give you an idea of the similarities and differences of Hinduism and Buddhism, I found this site for you.

During Wendy’s life ceremony, as I said, I shed tears. The emotional power in that room that day overwhelmed me, and my cramps set back in. I had to take my last Ibuprofen and a half Tylenol 3 while sitting there in the audience. I left a half hour before the end of the service, but my husband had not returned yet, so I stood by the door to the room and watched the rest of the service. When Wendy and her husband Madhu bid the crowd goodbye and began to make their way out, I set the CD I had burned for Wendy on a gift table, and quietly left the building. I did not want to chance me being contagious as causing any further immune problems for Wendy. As it was, on the last chant before they left, Wendy was clutching her chest and wincing at times from the pain. And yet she was also so happy to be there in that loving cloud of people chanting with her. It was definitely addictive.

I met my husband in the parking lot, and saw Ms. Kim coming towards her car, so I said hello. We talked for a moment about our endometriosis and I told her how I was doing after surgery, and that I’d be back to work on January 24th. I told Ms. Kim that I’ll be adopting her, “nope, I don’t have endo, there’s nothing wrong with me, must be mistaken!” attitude that she has had since her surgery, and we giggled.

Here are some photos from Wendy’s Life Celebration. All photos courtesy Libby Pink:

Madhu and Wendy

Madhu and Wendy

Live instruments and chanting for Wendy

Live instruments and chanting for Wendy


Madhu, Wendy & Durga, chanting

Madhu, Wendy & Durga, chanting

Gurumayi Chidvilasananda

Gurumayi Chidvilasananda


We went from the celebration of life ceremony straight to another friend’s birthday party that day.
When we walked in, my friend, yet another sufferer of endometriosis, came to me from across the room and said, “Well hello, floaty!” I told her I’m always amazed at how quickly she can recognise my drugged or emotional state, hehe. I told her about the ceremony we’d just come from, and how I was a bit discombobulated. I sat there next to my friend and just listened to conversation for a bit, until I was ready to fully be present in the room.

During the course of the birthday gathering, which was thankfully mellow, I took another half Tylenol 3 for the pain, and had a forbidden glass of red wine to help further calm myself from all that I had experienced that day.

We got home by midnight, and I’m pretty sure I just went right to bed.

Second Laparoscopy: Day 29 post-op

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

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. :)

Second Laparoscopy: Day 28 post-op

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

My husband

Me, sitting straight up cuz of the pain

Me, sitting straight up cuz of the pain


A view of San Francisco and the smog...

A view of San Francisco and the smog...

Closer view of San Francisco in 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

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.

Second Laparoscopy: Day 27 post-op

Thursday, January 13, 2011

Every muscle in my stomach felt pulled that day, probably from all the exercise I had since Monday night. I went dancing Monday, I lifted a 19lb box Tuesday, and did leg lifts Tuesday night.
Because of the pain I was in on Wednesday, I barely took any exercise. My left leg had increasing calf pain all day, too. It felt like I pulled a muscle. I realised after analysing it for hours that my calf muscle was strained because while sitting at the kitchen table doing homework the day before, I had been bouncing my leg the entire time.

I spent most of Wednesday in a bad mood. I was pretty sure it was PMS at that point.

On the good news front, I finally got my patient records in the mail. The bad news is that it did not include the original copy of my disability paperwork. I was very angry. I wrestled with the phone tree for Mt. Zion patient records, was transferred over to UCSF patient records, who said they cannot send originals of anything once it goes into patient file, and they referred me back to the assistant surgeon (Dr. Skillern) who put it in my file instead of giving the disability paperwork back to me in the first place. Oh and I love how she blamed my husband for not getting the paperwork while we were in the hospital:

“I spoke with Dr. Skillern regarding your disability form and she said she filled it out and file it in your hospital chart. Per Dr. Skillern she mentioned this to your husband after the surgery. I thought she filed it in your chart for our clinic. This means that you form is in the hospital medical records department. Either you will request a copy of the form from UCSF medical records department or you can send us another blank form and I will have Dr. Skillern fill it out.” (email correspondence w/ one of the nurses on December 23, 2010).

You know, obviously it’s my husband’s fault, because he did not have enough on his plate already with his wife having gone through surgery with complications, having to be admitted overnight, and he had perhaps 2 hours sleep the night before my surgery due to nerves, and he had to drive home and come back the next day, again on very little sleep, with the urgent notice that my red blood cell count had taken a dive and that I might need blood transfusions or more surgery. CLEARLY it is his fault for not recalling that Dr. Skillern mentioned to him that my disability paperwork was in my patient file and to retrieve it before we left the hospital. OBVIOUSLY Dr. Skillern was far too busy to just set the fracking paperwork on the table next to my hospital bed, and instead had to go the long way around, like she always does.

Had I mentioned how angry I was on Day 27 post-op?

After spending an hour going through phone trees and email with the UCSF nurses, I finally just made copies of the copies so that I had something for my home file. Then my husband drove me to the nearest disability office. To our utter joy and amazement, there was no one else in that office, and someone took my paperwork and said that copies were just fine and everything was in order! I was told that I should be hearing back in a week or so!

Spirits lifted a bit, I did a little bit of homework at the end of the night.