I Will Not Suffer In Silence

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.

As previously mentioned, this is the 5th cycle since surgery. I had three days of cramps leading up to george, who started on time on Friday, April 1st.

I was spotting by the end of the day on Thursday. It increased by Friday morning. I really didn’t want to go to work, but I pushed through the cramps, which were at a 4.5 on the pain scale. I loaded up on 600mg of Ibuprofen, looked up the bus schedule, walked to the corner, and waited for my bus.

The bus passed me, stopping three blocks up. I was so pissed off. I had relied on a local transit planning tool online, and also checked the schedule mounted at the bus stop. After the bus passed me, I looked up nextbus.com and found that there is no longer a stop where I stood. I then remembered that last year, there had been three different cuts to service routes, and I recalled that people were really upset over it. Proposition 22 passed in November, but it was too late by that time - AC Transit had suffered and made cuts before the prop passed.

I wasn’t personally affected by it at the time, because I still had a working car.

I walked back to the house and woke my husband, asking what I should do. I told him I was cramping, so I didn’t want to ride my bike to work. I told him my car is about to die, because it’s sputtering (spark plugs need changing), the exhaust is fubar, the rear brakes are leaking fluid and the drums are fubar, and the alignment is off due to a hit and run while parked last weekend when I was not paying attention to my car because we spent that weekend at the hospital visiting my husband’s father. Oh, and the “check engine” light had just come on this week on top of everything else.
I asked for advice - should I rent a car, take a cab, or did my husband want to drive me to work? And I could then have time to find a bus home later.

My husband said he’d drive me to work, much to my relief.

I got through the work day on only 600mg of Ibuprofen, simply because I was too busy to take more Ibuprofen throughout the day. The good news is that the pain did not ramp up enough for me to say, “Ok stop, I need medication NOW.”
The bad news is that since the pain was merely a 4.5 on the pain scale, that meant it was a continuous low drone of pain throughout the day that I neglected to properly manage. Thus, I made my day rougher than it should have been.

The pain started to ramp up by the end of my work day, and so I was pleased when a co-worker offered me a ride home. She also suffers with chronic pain (Interstitial cystitis) and multiple food and environmental allergies, so we’ve had many conversations, as misery loves company.

I cannot remember what I did when I got home, aside from taking half a Tylenol 3 and more ibuprofen. I think I just sat on the couch in a pain haze.

My husband got home from work a bit earlier than usual, so I thought we were going to the hospital to visit his dad again. Turns out he is just burnt out and wanted to leave work early. I get that. He whisked me off to grocery shopping for junk food, and we went to a friend’s house and hung out for the night.

During that time, I consumed another half Tylenol 3, some wine (yeah bad monkey, so sue me), lots of popcorn, cheese, strawberries and other sundries, and about 3 pints of water. I also had another bronchospasm - I’m still prone to those after getting bronchitis in February. What set me off was her husband having gone downstairs for a smoke and coming back into the house with smoke still on him and in his lungs. UGH. And my inhaler had been emptied the day before, so I had to push through that, too.

So that was Friday.

Saturday, we slept in, and then my husband dropped me off at the BART station, where I took the train to my long-awaited hair appointment (no sitting on the nasty seats this time - I stood and held onto the aluminum poles).

It’s been 3 months since I last saw my awesome hairdresser. It was right after surgery that I saw her, so I was excited to get something new done to my hair. It was my ME day and I wasn’t about to let the pain destroy it!! I popped 600mg Ibuprofen and half a Tylenol 3 and got on the train no problem.

Once I got into big scary San Francisco, however, things changed. Despite having GPS on the iPhone, as well as printed out street maps, I still could not get my bearings once I emerged from the subway BART station. I walked around in circles, trying to find the imaginary bus on California Street.
Within 10 minutes I realised the same thing that happened to me the day before in my hometown was also happening in The City - the buses are on tighter and changed schedules, now. Prop 22 didn’t do a damned thing to change that. GRRRRRRRR.
I called the hair studio and spoke to my hairdresser friend, who guided me to the next street over. I got to Sacramento Street and hopped on the 1. I got to my hair appointment 22 minutes late, but my friend still graciously accepted me and cut my hair exactly as I wanted it.

Before

After!

After :)

The pain had spiked when I sat down for my haircut, and I’d told my friend that I was at a 6 on the pain scale. I had popped another half Tylenol 3 by this time, too.

When my hair was done, my hairdresser instructed me on the best way to get back to the BART station. She suggested that since it was a lovely warm day, that I just walk the one mile back instead of dealing with the fubar bus system. I waffled at first, wondering if the just-recently managed pain would flare again. My hairdresser suggested I just hail a cab if the pain returned. I gave her a hug and set off into the unusually warm San Francisco day.
On the corner, I ducked inside the Out Of The Closet thrift store for a few minutes, before deciding I was far too distracted on the pain meds to pay any real attention to detail, so I set back off again, walking.

A half-mile into my walk, which was thankfully on a slight downhill step, I paused to get some photos of my hair (which you see above). After photoing myself, I felt a presence behind me, so I turned. There was this tall man, standing mere inches from me, and more to the point my backpack on my back. He turned away suddenly and began muttering to himself. He shifted on his feet, stumbled back a few steps, and lingered for a moment, looking at me out the corner of his eye.
I just glared at him, took a “I am going to KICK your ass” stance, and began swinging my very large, wide, heavy aluminum water bottle. He turned on his heel and disappeared around the corner.

This experience of course set off an adrenaline rush, which allowed me to walk the rest of the way to the BART station. When I got on the train, I was exhausted and drip-sweating. I refused to take off my hoodie, though. I stood the whole ride home, preferring to look like a speed freak, drip sweating and darting my eyes around, so people would leave me the hell alone.

When I got off the train, I waited for maybe 10 minutes before my husband arrived to pick me up. I thought I could go home at this point, but he reminded me that we were to visit his dad in the rehab center he’d just been moved to the previous day.

I ate a protein bar, got some hot lemon-ginger brew from the local free-trade coffee and tea house, and popped more ibuprofen, and we set off for the rehab center to visit dad.

Admiring a new iPad

His wife also came to visit him in the rehab center, but left after eating a meal in front of her husband that she knew he a) wanted and b) could not have due to his diabetes restrictions. Her total visit was about half an hour. I wanted to strangle her. But that’s another story for another time.

After a couple of hours, we told dad we’d hunt down his lost glasses at the dialysis center, and then we were off to dinner. The center was closed, so we’ll have to return again next week. We ate some sushi at the local hole-in-the-wall we love so much, and then returned home for the night, where I hung out on the couch with the heating pad, finally.

It was a rough night. I woke several times with gushing and pain. I stained my bed clothes, I am bleeding so heavily. I woke again this morning and had to take 600mg Ibuprofen and half a Tylenol 3 off the bat. I’ve been on the couch with a heating pad the entire time.

No idea what I’ll be able to accomplish today, though we do have to get our taxes done, so I guess I’ll start organising all my schooling receipts.

Today is Day 3 of george, Day 2 of pain at or above 6 on the pain scale, but most importantly, my third cycle where I have not (yet) been bedridden. Hope abounds.

My husband dropped me off at the surgeon’s office for my second post-op appointment yesterday on his way to work. I was already on Tylenol 3, as the pain had woken me around 5am.

I was very early to my appointment, so I had brought my laptop and was attempting to do homework. However, the pain ramped up, and it was very difficult to concentrate. As a result, I kept running into technical difficulties, which frustrated me, and likely didn’t help with the pain level. I estimated my pain got to 7.5 again at the surgeon’s office.

Around 10:30am, I made the judgement call to not go in to work. I phoned my workplace and made the arrangements for an afternoon substitute to cover the rest of my shift.

When my appointment time arrived, I was barely able to stand. I was shaking from the pain. I had just taken 600mg of Ibuprofen and half of a Tylenol 3 because I wanted to be coherent throughout the appointment. While my vitals were being taken, the director from where I work phoned and wanted to know what was going on. She said what I expected her and anyone who does not suffer with endo to say:

“But I just saw you yesterday and you were fine!”

Yes. But that was yesterday. The pain hits when it wants to. I was woken from my sleep with the pain.

The director asked me if this was Day 1 of my period. I told her, “Nope, it’s actually Day 3!”

I assured her I had no idea why the pain is now delayed after surgery, why I’m still getting pain at all, and that I was already at my post-op appointment and would be discussing it with my surgeon.

I appreciated that the director said she was concerned, and had wanted to check in with me herself, and that she was thinking of me. Most workplaces wouldn’t do such a thing. I did thank her for calling me like that.

My surgeon’s assistant and surgeon could see immediately how much pain I was in. They both catered to me sincerely, and made sure to bend down and look me in the eyes before speaking. Then they situated themselves in their chairs in the surgeon assistant’s office and we discussed how I’ve been doing since the January post-op appointment.

I noted how my January period had been shorter, but the pain and heavy bleeding was the same.
I noted how my February period had not left me bedridden, and how I did not have debilitating pain until Day 4 of my cycle, but that when the pain did hit, it still was 7.5 on the pain scale, and had it not been for the weekend, I’d have missed work the same as I always have before surgery.
I noted that my March period had also not left me bedridden until Day 3 (the day of this post-op appointment), when the pain reached 8 on the pain scale and woke me from sleep and caused me to cry.

My surgeon went over my surgery results again, saying there wasn’t much endo found this time around (stage I), and that she suspects neuropathy for the lingering pain. She went over the available options again, and said she knows most of them are out of the question for me, but wants to let me know that from current medicine’s standpoint, this is all that is available for me:

• Danazol
• Lupron
• The Pill
• Mirena IUD
• Presacral Neurectomy
• Hysterectomy
• Pain management classes

Out of all of that, the only thing I’m willing consider is the IUD and further pain management classes.
I actually broke down and started crying at this point. I told them that I had seriously tried to do the UCSF campus pain management, but my insurance would not cover it.

I further lamented that our insurance runs out at the end of April, because my husband was laid off in December. I said my workplace offers Kaiser, and I had no idea what to expect with Kaiser.

My surgeon and her assistant comforted me, and assured me they know people in the Kaiser system, and would do some homework for me to help get me transitioned over there in their pain management program.

I am SO fortunate to have these awesome doctors! I do not want to lose them because of insurance limitations!!!!

And now for the rejection list of treatment options:

The Pill has already made me clinically insane on two occasions in my lifetime.

I refuse to go on any hormone, GnRH agonist or male cancer drug to try to treat the endometriosis, because of the side effects of bone loss, male hair growth and lowering of voice, worsening depression and suicidal ideation (if not outright psychosis for me).

My surgeon herself said hysterectomy was useless unless she takes my ovaries, which are the main things that the endo is attacking. But if she takes my ovaries, I have to go on HRT, and that puts me back into the infinite loop of insanity.

Presacral neurectomy had never been mentioned before, and I was told it’s not recommended often at all - it has to be a special case - and my surgeon is starting to think I fit the bill for the special case.
I was told of the most common side effects and I asked smart questions, and I probably won’t go with the neurectomy. I will post more about that in a separate entry.

So again, the only thing I’m willing to consider is the Mirena IUD.

I got the prescription and referral in case I decide to go with the IUD.

When the appointment was over, I phoned my husband and told him I’d be hanging out at a friend’s house until the pain passed, and maybe I’d try public transit to go home.

I then walked to my friend’s apartment nearby and we hung out all day. By hanging out, I mean that we sat at her kitchen table, and spent a lot of time hacking up our lungs (I am still getting over the flu, she is still getting over whooping cough and yes I am immunized).

The pain did pass, and after awhile we left the apartment and got on a bus to go four blocks up hill to a coffee house. The bus ride set off a new round of pain. I thought that standing on the bus would be better than sitting, but nope - doesn’t matter. The muscles used in keeping oneself balanced and upright on a moving bus is enough to aggravate endometriosis pain. This is the second time it has proven true for me.
After we hung out in the coffee house, and my pain was only worsening, I asked if we could go back to my friend’s place. We walked back, since it was downhill, and actually the walking did help the pain a bit!

It wasn’t long after that that my friend had to go to work herself. I thanked her repeatedly for letting me spend the day with her. I spent an hour more at her place, trying to do homework again, and then my husband got off work and came and picked me up.
I thanked my husband profusely for dropping me off and picking me up.

I am very fortunate to have such emotional and physical support right now in my life. I wish all of my endo sisters had this level of support. I do not take it for granted because I have not always had this kind of support myself.

It’s a basic right to be treated humanely when you have a chronic, painful, incurable autoimmune disease, and yet so many are not treated humanely with dignity and respect.

Today is a new day, my pain level is low, and I will try to go in to work.

Friday when I woke up, I debated staying home from work. My whole body was seized up from the pain. I did light, gentle stretches to work out the kinks. I ate breakfast. The pain hovered around 6.5 on the pain scale.

I waited til the absolute last minute, then said ’screw it’, got dressed, took 600mg Ibuprofen, and went to work. While walking from my car, I saw the director, still sitting in her car. She rolled down the window and with a jaw-dropping grin said, “HEY! YOU’RE HERE!!!” I stopped and smiled back. I said, “I’m doin it! I’m gonna do this!” And she gave me the thumbs up.

Friday was the heavy flow day, but I did it, dammit. I worked a full day. It took 1,000mg of ibuprofen to get through the day, and the pain was much worse after lunch again (sitting on the hard floor, rubbing backs for naptime. I need a zafu because the flat chair cushions we have aren’t cutting it for me).

But I did it. I went to work on the first, second and third days of my cycle. This is unheard of pre-surgery. So there HAS been benefit. It is showing.

After work on Friday, my husband took me to get a rental car, because my car is on its last leg and I needed to get to a teacher seminar over the weekend.

On Saturday, I woke up before dawn and prepared for the teacher seminar (second Saturday of every month, until June 2011, during my internship). The bleeding was still heavy, but the cramps were not so bad. To my dismay, I discovered I was already out of Ibuprofen, or at least I thought I was. I just couldn’t find the spare bottles anywhere at that moment (I have since found not one but three spare bottles, LOL). I drove off to pick up a classmate and fellow endo sister, and watched the sun rise from the Bay Bridge. We made it to class on time and got the seats I needed (right by the door in case someone’s fragrance is overpowering for me).

I have to say, Saturday and today have been my worst pain days this cycle, and if it would have fallen on a weekday, I would have missed two days of work just like usual. :(
However, that said, the pain did not get really bad until Day 4 of my cycle.

I consumed four half Tylenol 3s throughout the day, and 1,000mg Ibuprofen as well yesterday, but I made it through the teacher seminar, got my friend safely back home, and I came home and I drove my husband and I to get Indian food for dinner. The pain ramped up again during dinner, and I was antsy to leave and just be in bed. I really did go to bed right after dinner. The bleeding subsided that afternoon, even though I was still experiencing pain. The flow stopped overnight, only to return heavy and painful this morning around 9:30am. I got to about a 7.5 on the pain scale, complete with nausea this morning.

I have consumed a whole Tylenol 3 so far today, and now I’m off to visit my father-in-law in physical rehab while he works on trying to walk again after having his second big toe amputated due to complications of diabetes.

Day 53
Tuesday, February 8, 2011
Woke at 4:30am again and spent the rest of the night in twilight sleep again.
High burst of social anxiety while at work; had lots of vocal tics at lunch time, which was embarrassing, though thankfully no co-workers were around to hear it. Going for a walk did not calm me down. I took 1mg of Lorazepam, and still was not calmed down. Not surprisingly, the children did not nap for me. My energy was probably keeping them awake.

When I got home from work, the exhaustion set in. I took an hour nap, woke and did not feel refreshed. In fact, my whole body felt like it was seizing up. I went to bathroom and discovered my vaginal mucosa had changed colour. That means two things: 1) george will be early, and 2) nothing has changed with this second surgery with regards to my body wanting to become a pillbug right before menstruation each month.
My mid and upper back kept trying to seize up on me, so around 8:30pm, I took half a Tylenol 3. I could have taken Ibuprofen, but I also did not want to chance becoming wound up again, and did the ‘whack-a-mole’ or ’shotgun’ approach by taking the Tylenol 3 to keep me down. I went to bed at 9:30pm after I was falling asleep trying to catch up on all these damned journal entries.

Day 54
Wednesday, February 9, 2011
I woke at 5am and spent the rest of the night in twilight sleep…again.
When I got out of bed for the day, my body was still feeling seized up, and I was experiencing pelvic pain at about a 4 on the pain scale.
Took 400mg Ibuprofen, did stretches, loosened up a bit. Went to work.

During music and movement with the preschoolers, I pulled my abdominal muscles too taut and it stung inside. :(
By mid-morning, I felt something wasn’t right, so I went to the bathroom to check, and sure enough, I was spotting. It was dark brown and stringy. I was officially 2 days early. >:(

I wanted to see how bad the pelvic pain might get, if it came on at all, so I did not take Ibuprofen. The pain never happened! My entire back kept wanting to seize up on me all day, though. I toughed/stretched it out. When I got home, I meant to take 600mg Ibuprofen, but forgot, because it took all my energy to focus on getting internship practicum paperwork done, getting a load of laundry done, and making myself something to eat for dinner. I was in total zombie mode.
The spotting I had experienced earlier seemed to be a spurt, rather than anything continual, so I hoped I would make it to Friday before actual flow began. Still, being that exhausted did not bode well.
I slept on the couch between 8:30 and 9:30pm, waiting for my laundry to finish, and once it was done, went right to bed at 10pm.

Day 55 - TODAY.
Thursday, February 10, 2011
I woke at 5:30am and spent the rest of the night in twilight sleep again. :(
I was aware of the fact that I had pelvic pain, but I kept pushing it to the back of my mind. I was also aware of the fact that the knee pillow had actually made my knee pain worse overnight. The knee pain was sharper than the dull, gnawing pelvic pain.

When I finally did get out of bed for the day, I discovered that the spotting had turned to bright red flow. The moment I saw the blood, I began a mantra for today: “But it’s okay, because I’ve had the surgery.” On a deeper conscious level: “I will not let fear win out. I will be fine.”

I have two more days of work to get through, and a weekend to enjoy. I had sugery. I will be fine. No room for ‘but’ and other side thoughts. I will breathe. I will live. I will be fine. I had the surgery, after all.

The pain was managed on 600mg Advil for the morning! I got through an assembly and a work period - lots of kneeling & bending - I was ok!

Then the pain ramped up after lunch. :(

This was the EASY part of the day, and yet the pain ramped up. The director used triggering words with me; “I thought surgery was supposed to stop all the pain?” Even though I told her before surgery that it’s a HOPE, never a guarantee that the pain will stop.
The last job that uttered those words fired me.

Will I be fired from a second job because of Endo?

This is my 3rd menstrual cycle since surgery. I have reduced pain, but not enough - I still had to come home from work. I’m trying not to have a PTSD freakout over this.

When will pain relief start? 3 months post op? 4 months post op? Ever?

And then the anger sets in. I AM SO EFFING MAD!!!! I have spent the evening wavering between wanting to sob inconsolably and wanting to throw heavy things through the windows. I ended up sobbing for a bit.

To add insult to injury, one of my high school friends took over a thread on my facebook account, telling me I “should just have them remove the shit” so I won’t be in pain anymore. Then she went on and on about how grand life would be and that I won’t have to go on HRT at all and that I’d be totally pain free. She then literally said, “if you like the pain then keep your ovaries. I don’t have to have endometriosis to understand long term chronic pain.”

Seething with rage (which set off more pain), I publicly declared I was unfriended her, and followed through immediately so she would not have a chance to comment again. Then I wrote, “if anyone else wants to insinuate that I like being in pain, you can just remove yourselves now and spare me the fucking effort!!!”

She didn’t stop attacking me, however. She wrote me a facebook email with expletives, so I reported and blocked her.

I am so hurt and angry.

This led me to post a video from Kill Bill, which contains my favourite line: “…Now if any of you sons of bitches got anything else to say, NOW’S THE FUCKING TIME!”

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

Day 20: Thursday, January 6, 2011

I swear, all I wrote on my notes for that day was that I was able to lay on my stomach for half an hour while I napped. I was really tired all day that day. I don’t remember anything else. That’s what happens when I get behind by almost a week!

Day 21: Friday, January 7, 2011
I had lots of energy that day, and used it to get some paperwork done, work on my first semester self-evaluation report, and to get some exercise in.

At 2pm, I climbed the stairs to the split Victorian house we live in. I climbed the stairs three times! The pain hit once I got up to the top of the stairs the third time, so I called it a day for exercise. Sadly, I experienced increased pain and discharge within 10 minutes of stair climbing. :(
I took 600mg Ibuprofen for the pain.

Despite the cramping from the stair climbing, I began feeling guilty for missing work, even though I still had the entire next week slated to be off work. I was itching to get back and I was feeling like I was milking this whole time off thing. So I called my head teacher after she’d gone home for the day, and spoke with her. I also phoned the director on her cell phone. I even spoke with the school secretary. All three of ‘em said I need to take the time off to let my body heal up, and not come back to work too soon and risk injuring my surgical incisions or worse, tearing anything inside.
We agreed that because my return date was the same date that my next period is due, that I would also err on the side of caution and take part of, if not all of that week off, too. That means I’m off work for six weeks instead of four. Of course, six weeks is what my surgeon wanted me off work for, anyway. I am the one who originally thought three to four weeks would be sufficient.

Taking more time off work brings up my old PTSD issue, because after my first surgery, I was fired from a job when they thought I’d be ‘cured’, even though I told them from before surgery, after surgery and each time they brought it up that there is no cure for my condition, and that surgery is not a guarantee for pain relief. All we can ever do is hope for the best. Endometriosis is brutal. It sucks. It’s not fair. IT’S NOT MY FAULT THAT I WAS BORN WITH IT.

I DIDN’T BRING THIS DAMNED DISEASE UPON MYSELF.

Friday night, my husband and I went to a nightclub to celebrate a friend’s birthday. It was the first time I’d set foot inside a nightclub, but not a bar, since surgery. The bar was on January 4 for another friend’s birthday. This night, it would be a full on dance club venue, and I would be tempted to see if my body could dance.
We got there and the music was nothing I’d like to dance to, anyway. My husband took my coat upstairs to coat check, and I hung out with friends and acquaintances until he returned. Because I didn’t really know anyone, naturally I wanted a drink. Old habits never die. I ended up getting pretty drunk that night. This is the third time I’d had alcohol since surgery.
I didn’t make an ass out of myself or anything, but I do feel guilty that I drank so much. I was indeed a bit hungover the next day.

?, My husband, me, Caroline.

Sharon and me

Thursday, December 23, 2010

I had my third emotional breakdown in 24 hours, when the surgeon’s office called to say the assistant surgeon left my disability paperwork in my patient records at the hospital. I never heard my phone ring so by the time I called back just after noon, the surgeon’s office was closed for the holiday weekend.

I called the main line at my surgeon’s office, and I also called the nurse who had left me a message, and I left messages but never heard back.

I called the hospital and they said I have to fill out and snail mail a form to release my information, and that they’d have it to me in 10-15 days.

For some reason, I had it in my head that the disability paperwork was due no later than 11 days after becoming disabled, so that’s when I had a full on nuclear meltdown and sobbed for what felt like an hour.

On Day 5 post-op, I sobbed because my husband was in a bad mood over his upcoming birthday (he gets into this funk every year, and every year I forget that he gets into this funk). He is also in mourning over the loss of his job two days before my surgery, so he’s depressed as hell. I’m super empathic to begin with, and I needed him to be my everything for support right now, so I broke down as well.

Earlier that morning on Day 5, I cried while watching my own endometriosis video about my surgery. I just sat there and sobbed, because I actually went through with the surgery that I didn’t want to go through until next June. As a result of doing the surgery now, there were complications as I had feared, so I was full of “I should have…”

In brighter news, I took my first unassisted shower on Day 5, but I had to nap afterward. I was a good girl and took the Tylenol 3 before the shower. After the shower, I was a brave girl and went for a car ride with my husband (he drove my car this time, at my request). The bumpy roads were easier - I did not cry - but they were still hell at times on my innards. We went to my workplace so I could pick up some cards left for me, then we went to Mariposa Bakery for some gluten-free goodies and an almond milk mocha, and then we went to Whole Foods to get some vitamin D3.
I’d been having a hell of a time finding D3 again, and that day, my friend said he’d located some at Whole Foods with no soy ingredients. Every other place near my home has the D3 with soy, now. While at Whole Foods, we also found a cotton flannel unbleached cloth specifically for castor oil packs that my naturopath recommended, and we found vitamin A with the ingredient my naturopath requested. So that turned out to be fruitful shopping.

While we were out, the bleeding ramped up to the point where it now looked like my usual period. This alarmed me at first, but then I realised that had I not had surgery, my period would have been due this day, anyway. I called the hospital and left a message inquiring about it.

We got home and the gas company was there waiting for us - I had called two days prior about a droning noise which had been going on since August or September. PG&E said they’d be out sometime on Thursday, and that we didn’t need to be home. However, once they were at our home, they found that the earthquake alarm on the gas meters was hooked up incorrectly or something, and in order to do any work on the meters, they had to shut off gas to all the apartments in the house. PG&E called me to tell me they’d be at our house til 6pm, and if they missed us, to just call them back out to hook up the gas again. We got home at a quarter to six, and saw two trucks and a gaggle of PG&E guys were on our block, hanging out. The moment we entered the door and turned our light on, we heard a guy call out, “Hey! They’re home!”
The head dude came right over to us and told us that noise was in fact found on three of the six meters, and that on one of the meters, it was so loud that it reminded him of a car with exhaust issues! So they fixed all that. They came in and lit the pilot lights to our gas stove and wall furnace, and that was that. :)

Day 5, Thursday night, my husband bought us Thai food. I ate seafood curry for dinner. mmmm, foooooood.

I had a bowel movement after dinner, but was still constipated. By that point, I was using butt cream. I took some more Miralax after dinner and had to go again. I took 2 calcium/magnesium pills and a vitamin D3 right before hitting the bathroom. I was still constipated. :(
The bowel movement was very thick, long and paste-like, just the same as it was on Day 4 post-op. After all the pain and pushing, I sat for a moment and had to go again. This time it was much softer. I was glad I took a Tylenol 3 and 400mg ibuprofen for the pain, but I wished I’d taken it sooner than right before I had to go.

Total bowel movements that evening was 4, and as a result I had muscle spams on the left side from pushing so hard. :(

Weather-wise, the rain had subsided for us a bit on Day 6, which lent toward our being able to go out of the house for a bit without me being afraid of slipping on wet pavement.

I wanted to say that after my last journal entry, I tried to go to bed but could not sleep. All kinds of work-related stress was rushing through my head, and I couldn’t make it stop. I really need more muscle relaxers. My body was clenched. Even when my husband came to bed and cuddled with me, my body was tense. I tried to melt into my husband but it was extremely difficult to just let my muscles relax. He fell asleep before I did! I finally got up around 2am and took 1.5mg Ativan and waited for it to kick in. It was another 45 minutes before I finally fell asleep, but I did not sleep well because of the tense muscles everywhere.

Of course, Ativan makes one groggy and forgetful, so when my alarm went off this morning, I turned it off instead of hitting snooze. And then when my husband’s alarm went off, I got up to turn my alarm off before realising it was his alarm.

His alarm going off meant that it was 7:30am. I have to leave for work at 8am. I got up, went to the bathroom (the spotting that had stopped after my shower hadn’t returned), ate some cereal, threw some clothes on, and told my husband I would take my homework in to work today instead of him doing it for me, since I was up and about, and there was no visual sign of george. Although I was cramping at about a 3 on the pain scale.

I got in at work to drop off the homework, and to my dismay, up on the board in the office, were the names of two other assistant teachers in my room. I whirled around and exclaimed to the secretary, “They’re out? But I’m not even supposed to be here today! That’s half the adults in the room out today!”

I decided right there to sign myself in to work. I was ten minutes late but I knew I was needed so I didn’t care about being tardy.

My head teachers were relieved to see me! I told them I wasn’t supposed to actually stay, but upon seeing two teachers out, I promised to stay until the pain became unbearable. For the first 10 minutes, it had been two teachers with 22 children. Then I came in, and about five minutes after that, our newest assistant came in. Four adults is better than two!

I was able to retain enough focus to see a group of children through snack and work period, which lasted an hour and a half. I even helped a child who had a potty accident. I took the opportunity to use the bathroom myself, after cleaning up from the child’s accident. That’s when I discovered that today was the day actual flow had started. So I’m counting today, not yesterday, as officially Day 1 of george. The flow was thick, dark reddish brown, and contains debris. As the day goes on, the color is getting more brighter red.

I forgot to bring my water bottle to work, so I had nothing to take any medication with. I decided to see how bad the pain would get.

When the lights went out to signal cleanup time, that’s when the pain ramped up for me. I was suddenly doing a lot of bending over or kneeling down and getting up again to help children put their materials away, and my body said it wasn’t having any of that.
As soon as we got all of the children settled at group time, I turned to one of my head teachers and told her I’d need to go. She thanked me sincerely for the time I was able to be there today, and for helping get the class through work period.

I then set off to find the lunch supervisor to let her know I would not be there for the rest of the day. I could not find her - seems she was late to work - so I let the office staff, including the director know. I made sure to point out that the other two assistants in my room were also absent, so the lunch staff would be really short-staffed today. I apologised for me being part of that problem. I let the director know that the extended care supervisor said she would sub for me on Tuesday, and that one of our helper co-workers (not a full on Assistant Teacher) would be there on Wednesday for me (as that is my pre-op appointment).

I signed out and began my slow walk out the door and down the street to my car. Every step made me wince in pain. I knew I’d be home soon and could take my medication.
I drove home in the pain haze that comes over one’s eyes, and had to force myself to be alert enough not to drive over any curbs or worse.
I made it home just fine, got out of my car, locked the door, closed the door, walked away, and … realised I’d just locked my keys in the door. I searched all of my pockets. No keys. I peered inside the car. There were my keys, still in the ignition. *sigh*

I called my husband and a neighbor. No answer. I knocked on another neighbor’s door. Thankfully, he was home. Thankfully, he still had our spare house key from when he did catsitting for us!
I called road service and put in a request. Then I ate some yams and drank some blueberry juice so I could take my medication. With a heating pad on my abdomen, I waited for the road service guys to show up. It took about 35 minutes, and they got my keys out fast, with no damage.

I came back inside, finished my yams and juice, took .5mg Ativan, and now I will finally, after about an hour of saying I will sleep - now I will finally allow myself to sleep.

The mid-cycle pain (mittelschmerz) started on November 16 and lasted through November 17.

On November 18, I was highly fatigued, and missed a friend’s concert. I was however able to get some teaching internship homework done that night, with my remaining spoons.

I got through work on November 19, and had to return to work on November 20 for the annual Fall Harvest Festival. Parents of the children who attend the school were put into groups and had a continent assigned to them. They all had to cook or bring foods found or popular to a particular continent. Each class did songs and dances relating to the continent/country they are studying. My class has been studying the Philippines in Asia, and so they counted from one to ten in Tagalog, sang Sampung mga daliri (see another cute rendition here), attempted a traditional dance, and sang I Am But A Small Voice (which went so well that they got wild applause).

After the Fall Harvest Festival, I needed downtime. I’d used up all my spoons, but I still wanted to go out dancing that night. I was pretty upset with my body for being so tired and achey. I was mad at my mind for being so moody and premenstrual.
I ended up staying home and joining a party of friends 2,500 miles away in my home state. They were having a party and so I joined them on Skype. They were all super drunk and having a fun time, so my husband and I decided to have elderflower fizz - it is elderflower liquor with champagne.

Well, the champagne hated me worse than I expected. I know I’m not supposed to have anything with yeast or sulfites, but this particular champagne must have been loaded with them. My stomach hadn’t hurt that bad or been that upset in a long time. What a shitty day overall it had turned out to be, health-wise and emotionally for me.

On Sunday, November 21, I went to a matinee with my husband and two of our friends - we saw Harry Potter and the Deathly Hallows. When I got home, I spent the rest of the evening once again catching up on teaching internship homework, and practicing my presentation for Monday.

Despite the weekend’s ups and downs, my husband and I were able to enjoy each other intimately. I note this because with endometriosis, it is often difficult to be intimate without grave pain. Twice a month is the norm - anything more than that and we’re jumping for joy. Such as it was this month - a veritable jumping for joy.

On Monday, November 22, I began to experience gnawing uterine cramps, and I knew this was the result of having been intimate with my husband over the weekend, because I am diagnosed with dyspareunia. Same thing happened which set off the mittelschmerz last week.
So on Monday, I had sharp stabbing pain on the right, then on the left, then radiating through the rectum as day/night progressed. That day, I took half a Tylenol 3 + 400mg Ibuprofen at lunchtime at work. Later, I ingested half a Tylenol 3 + 400mg Ibuprofen at dinner time, and then another half Tylenol 3 after dinner while at a friend’s house catching up on The Walking Dead.

When I got home, I experienced a painful bowel movement, which set off some nausea and shakes, and reminded me what I’ve known for years - that I have rectal involvement with endometriosis. I went to bed with a heating pad on my abdomen and lower back all night.

This morning, I woke nearly two hours before my alarm clock went off, and could not get back to sleep. I had only had five hours of sleep. Despite that, the pain level was very low, so I went to work. I did not bicycle to work because the pain has been too unpredictable, and it has also been raining.
While walking from my car to the workplace, I was so shaky that I thought I might collapse. I couldn’t tell if the shakiness was from nerves or from my body becoming so weak from fatigue and recent pain, but I forced myself to keep walking.
I got through the morning in a moderately agitated state, with frequent bouts of ‘warm flashes’ because my hormones are doing acrobatics inside of me.

The gnawing uterine cramps started up again at lunch hour. I experienced intermittent sharp stabbing pain on the right ovary. I took 600mg Ibuprofen at lunchtime at work, but the pain radiated to my rectum, which left me debilitated, shaky and nauseous. Right before I was to end my lunch break, my bowels went into a painful tizzy, and I spent many minutes on end at the toilet, trying not to vomit from the recto-vaginal pain as a painful bowel movement tried to happen. When I finally did defecate, there was blood in the stool. My anus did not hurt, so I wondered if it was from hemorrhoids or from endometriosis perforating my bowels. Either way, I was feeling really ill.

I can handle a certain amount of uterine pain more than I can handle the ovarian pain, but I cannot handle the recto-vaginal pain at all. May as well beat me senseless, it’s all the same.

When I got home from work today, I applied a heating pad to my bottom, half a muscle relaxer (Soma), .5mg Ativan, and a nap. I slept from around 3pm til nearly 8pm. I woke to urinate, then had cereal for dinner, which caused a new round of painful defecation - loose this time, with some more blood, and nausea. I took my temperature - it’s 99.4°F. But then it’s been 99 point something more often than not for months, if not over a year, now.

I began to wonder if I have an intestinal virus. I’d spent the better part of last week fighting off an upper respiratory tract infection. Preschoolers - they’ll kill ya.

Now I’m back in bed, journaling all of this before returning to sleep for the night.

Good night.