I Will Not Suffer In Silence

Okay this is driving me nuts. I am constantly behind at updating about my condition, and it’s only hurting ME when I cannot track things in a timely fashion!

I have been in a relationship for seven months, so the whole “new relationship energy” should have died down a bit in order for me to get back to taking care of my blogging and whatnot…but it hasn’t died down. I mean, it’s good that the energy hasn’t died down, but I need to FOCUS! lol

Back in August, my doctor got back to me and reluctantly told me to stop taking 600mg/day of Gabapentin because of the side effects I was getting. So I went down to 500mg/day and stayed there until I felt comfortable increasing, again.

It wasn’t until October that I felt comfortable, so I increased to 600mg/day again. I’ve stayed at that dose for 13 days, though after this latest round of endo pain, I’m ready to continue increasing dosage!
Then again…I did have a terrible migraine today, which made me seriously light sensitive and nauseous.
One of the side effects of increasing Gabapentin last time was a bad headache, so I will wait at least another day before continuing the dosage increase.

This month, I finally began seeing a physical therapist for the latest diagnosis: Pelvic Floor Dysfunction. I received this diagnosis back on August 7th from a doctor who refers out to physical therapy. I was told that this diagnosis is NOT to replace Endometriosis or Dyspareunia. I was told I ALSO have Pelvic Floor Dysfunction ON TOP of the other two diagnoses. This is why I came home and sobbed back on August 7th.

Going to the physical therapist only confirmed what the referral doctor suspected. The first appointment was on October 1st. I told my story to Dr. Hale. She wanted to know as much detail as possible about my pain and cycles, what worked and what didn’t, what surgeries I’ve had, what meds… everything going back to age 14.
Afterwards, she said based upon my case history, and knowing I was so close to my next cycle, she would not perform an internal exam. Instead, I was hooked up to a biofeedback machine (with electrodes attached to my pelvic area and labia) and was instructed to bear down, then relax several times. It was very hard to relax the region at all, and it showed on the monitor. Tensing my muscles set off mild cramps, but I was able to get home without dying. The next day, george showed up.

For the second physical therapy appointment on October 17, my girlfriend drove me, as I was unsure about the amount of work to be done.
This time, an internal exam was done, but very lightly, as Dr. Hale could tell how intensely tight my pelvic region is. She winced several times and said she felt very bad for me. At first, I wanted to say, “Oh, it’s not that bad”, but I held back. She’s the doctor – she knows this is bad news. Me? I’ve just developed ways to cope with it all these years, and this is SO FAR FROM BEARABLE PAIN. So very far. Dr. Hale assured me of that.
Despite the lightness of her internal examination, I cried out in pain a few times. Again, I felt like a wuss for doing so, and was reminded that I am in no way a wuss, that my condition is severe! She told me, “You and I are going to be friends for a long while.”

I came away from that appointment with a directive to NEVER cross my legs again; something that is SO DIFFICULT to break!
I was also told that I must NOT sit like a lady anymore. I have to sit with my knees far apart, and I have to sit my pelvic area downwards, bearing down. This means I have to sit up straight.

I must also do exercises a few times a day for a couple of minutes each time.

So. My third physical therapy appointment is going to be this Wednesday. Unfortunately, most of the pain from my current flare will be tapering off by that point. She had wanted to catch me in a pain flare. But I cannot get in to see her any sooner due to work obligations already in place.

The goal of physical therapy is to retrain the pelvic floor and hopefully also end up mitigating the pain of endometriosis, and cease the pain of dyspareunia.

We shall see what happens.

On the medication front, I have hopefully ended the battle this month with Kaiser doctors refusing to refill more than 15 pills of Norco at a time for me. After going round and round between multiple doctors, I was finally granted 30 pills at the beginning of October’s pain flare.

I have 14 and a half left as of tonight. This will definitely see me through this pain flare and November’s. So the next medication battle isn’t until end of November so I’m prepared for December.

So the threat of cramps was real. I’ve been bleeding heavily all day, and the cramps got to me at work twice today. I consumed 1,600mg of Ibuprofen, and now at 9:25pm I’m crying “Uncle” and took 800mg more of Ibuprofen, for a total of 2,400mg today. I’m camped out in bed with the laptop, and a rice heating pad on my pelvis. I wager I’m at a 6.8 on the pain scale right now.

This recent bout of cramps began soon after I lifted 3lb weights. I had stretched my torso out doing some of the weight exercises, and that may have stirred things up a bit. Ouch.

I really want half a vicoprofen, but I’m down to my last pill. Time to get in touch with a Kaiser GYN. I’m new to Kaiser again. I had Kaiser through my work for a short time in 2012 when my husband was unemployed. Then I got on his insurance once he became re-employed. Then, this year I had to get on Kaiser through my work again, because my husband divorced me to go be with the woman he cheated on me with…who lives in welfare housing and has two children under the age of 6. Good luck with that new life. He has to support her, her two kids, AND me (through alimony). Good luck with that. [expletives deleted].

I’m bleeding like a stuck pig, I swear.

I wanted to update you on the alcohol consumption. The fear of side effects on Wellbutrin did not last long, and so I went back to drinking while out at the clubs. So far I have not had any seizures, but I have been seriously hungover from only 3 drinks. :p

The depression still comes in waves, and is no longer tied to being bedridden from endometriosis. Nowadays, when I talk about depression, it’s because of the affair and divorce.

But the endometriosis is still there with me. Right now, the pain is radiating from my uterus down both of the outsides of my legs, down to my knees. I have been super fatigued all day. I came home from work and just parked my ass on the couch for hours before finally crawling into bed out of resignation to the cramps.

I hope tomorrow is a better day.

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

• Attended two Alexander Technique weekly classes.
• Attended one Iyengar Yoga weekly class (I would have gone to a second class but work held me over)
• Got free acupuncture

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

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

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

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

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

This is AWESOME.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Here’s a couple photos of us:

Doing the AIDS Walk, 2011

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Despite having cramps this morning, I did not want to chance taking my car to work, and I had forgotten again to see if there was a quick bus to my workplace…so I bicycled to work. This is the first time in 134 days that I have bicycled! It felt so good. Granted, I live only a mile from my job, but still, any exercise is good exercise. The weather has finally turned from constant winter rain to unseasonably warm and sunny; yesterday it got up to 83°F and today it got up to at least 86°F, so there was no excuse not to bike to work.

Speaking of exercise, I’ve been weight lifting again. Don’t get excited – they’re only 3lb weights. But as I said, any exercise is good exercise. I typically do the weights before bedtime, but I’m trying to get better at lifting when I wake up in the morning, too.

This month has been stressful for three reasons:

• I’ve been sick all month
• My father-in-law’s been in the hospital and just underwent a Transmetatarsal Amputation on Monday of this week
• A classmate who wanted to work with me on the thesis project for graduation has not done anything useful, and I have to fire her.
• Mercury turned Retrograde yesterday.

I detailed my getting sick in this post. I felt like I was getting worse, not better, on that day, but instead of starting in on a new pack of antibiotics, I decided to give it a few more days, since my doctor said the z-pack was supposed to have benefit for 5 days after the last pill. I just didn’t want to have to get a yeast infection. I have enough going on down there as it is with the endo.
I’m still coughing up junk, but not as much. I’m still needing what’s left of my inhaler once a day, usually in the morning. My ears are still clogged and the left ear is still painful, but not all day long anymore. So I guess I’m getting better…

Around about March 25, my arse started bleeding again. Same as it ever was, always a week before my period. It lasts a few days and happens during bowel movements, and then stops.

This week my symptoms were near-debilitating low back pain on Tuesday, and intermittent uterine cramping throughout the day on Wednesday and Thursday. Then last night I went to bed with the heating pad, woke with worsening cramps at 3:30am, took a half Tylenol 3, and went back to bed with the heating pad. This morning when I got up for work, I had moderate low back pain and the pelvic pain was about a 4 on the pain scale.
I kept forgetting to take ibuprofen all damned day, but after biking to work, I felt like I was more limber throughout the day. So that’s excellent.

Regarding my stress level…my father-in-law spent February in the hospital and then in physical therapy rehab after having his left toe amputated. Five years ago, he had his right toe amputated. He has mismanaged his diabetes for 20+ years, and is now shocked that he’s losing digits. When, two weeks after being discharged from rehab he was back in the hospital with another gangrene toe on the left foot, all hell broke loose (again) with his wife.
She told him he can’t come home until he can properly care for himself. Then she went on a previously planned vacation with her son and wasn’t back in time for her husband’s surgery. The surgery was a much agonised-over foot amputation.

His wife got back the day he had surgery, showed up at the hospital once he was out of the recovery room, and then fled in a hissy fit a couple of hours later. I’m the one to thank for that, because I got tired of her talking about him as though he wasn’t in the room with us, bitching about how he doesn’t take care of himself and it’s all his fault he’s back here again (not entirely true – he has a calcified artery in his leg, so no amount of dietary management or exercise was going to stop the toes from dying. She even told me earlier in the day that she was throwing out all of the “liquor”, even though he only has wine in the house. I tried to explain that his occasional glass of wine isn’t what set all this off but she wouldn’t have it.

Sure, yeah, it’s still his fault over time due to gross mismanagement of his illness, but he didn’t do it in the past two weeks as she keeps claiming). Anyway, I told her she and he need to work this out, it’s not for me and my husband to figure out for them. And apparently that’s talking down to her and I was told, “You can’t talk to me like that!” and she fled. Left her husband there, eyes welling with tears. Refused to answer her phone for roughly 15 hours. Wasn’t at the house when we drove by after hanging out in the hospital awhile longer.

I found out later that she’d had a previous marriage and that the guy was an alcoholic who literally drank himself to death. So it seems she’s having a giant triggering flashback that she can’t escape, and she’s projecting her previous marriage partner onto her current partner. Wow, serious mental issues, there. I’m told she refuses to do therapy. The way she freaked out when I said they need to work on their stuff kinda indicates her refusal towards therapy. I dunno. I don’t actually want to talk to her again for awhile.

The other stress I’ve had revolves around continuing homework and internship responsibilities, and the classmate who wanted to work with me on the thesis but who has barely done anything at all towards it. I’m going to see what she produces for the seminar next weekend and then fire her if she doesn’t have enough to show for. Ugh. Hate it. But she can’t take the credit for all my work. I won’t let her.

In the food and drink department, preceding this menstrual cycle, I have imbibed on wine, port and nigori to the point of drunkenness, but not anywhere near the point of making an ass out of myself. I have gorged on chocolate and cheetos – staging a rebellion I guess – I have no excuse. I know these things hurt me and I did it, anyway. I wanted comfort food to deal with everything.

Regarding the astrology thing with Mercury going retrograde – I’ve been feeling the effects of that for the past two weeks. Ugh. It becomes harder for me to control my mouth. It becomes impossible for me not to drink or spend money or in general do unwise things to my body and mind. Most people find astrology to be hogwash. That’s fine, we’re all entitled to our quirks. If you don’t like my quirk, I don’t need to hear about it. Plus, I’m PMSing. Telling me how illogical astrology is will just get you thrown into a pit of rabid weasels.
I’m probably PMSing so badly because of all the junk I’ve been putting into my body. But it’s too late, now. I just have to go through this month and hope all the damage I did isn’t long-lasting in my body tissue.

The PMS is pretty harsh. I’m extremely moody and my body temp is all over the place, but mostly I’m freezing. I just spent a day in hot weather, came home, stripped down to my underwear, and within an hour I was freezing and now I’m still freezing, even though the house is 70°F inside (it’s down to 73°F outside). I’m literally wrapped in a velour blanket. Oh and the cramps are back again, now that I’m cold. Awesome. Good thing I just ordered some leafy green saag from the local Indian restaurant. Oh yeah, spending money again. *sigh*
George will be here officially in a minute – the mucosa changed colour this afternoon.

Lastly, I don’t think I’ve experienced mittelschmerz this month. I know I said the same thing in January and went back on it, and then in February it was difficult to tell for sure because it could have either been dyspareunia or mittelschmerz, or both. This month, I was just too stressed out to remember to record whether I was having mid-cycle pain.

The last day of george was February 13. There had been nearly no bleeding overnight from the 12th to the 13th, and then the cramps and bleeding ramped up by 9:30am.
I still went out of the house despite the pain, and an acquaintance helped me return the rental car I’d gotten for the weekend seminar. I came home and took a whole Tylenol 3. The pain radiated down the inner side of my thighs almost to my knees. I was nauseous. The pain reached 7.5 on the pain scale.

This of course proved to be the “last gasp” as we call it – the bleeding and pain abated by late afternoon and then I spotted on the 14th and 15th.

The good news of the February menstrual cycle is that I was not bedridden at all!
The bad news of the February menstrual cycle is that had the pain struck me on a week day as opposed to the weekend, I still would have missed two days of work, because the pain was above a 6 on the pain scale and required narcotic medication to treat.

Eight days later, like clockwork, mittelschmerz (mid-cycle pain, a.k.a. ovulation) occurred and lasted for two days. The symptoms consisted of sharp, intermittent stabbing pain in the uterus and left ovary (that damned left ovary!!!), which lasted for hours. On February 22, I took half a Tylenol 3 before bed. On February 23, I took 600mg of Ibuprofen before bed. The pain lessened but was still present (less stabby) on February 24 (today). It’s difficult for me to know if the pain would have been less sharp, because on February 21 and 22, I was intimate with my husband (funny how ovulation and an increase in libido happen at the same time, huh? ;). It could be the dyspareunia OR the mittelschmerz OR both. I’m special that way.

So the bad news is:

• The pain still got to 7.5 on the pain scale, which is unacceptable.
• I continue to have mittelschmerz.
• I continue to have dyspareunia.

Still, I am excited about what promise the March menstrual cycle holds. Each month my body recovers from surgery means hope that the really bad pain has been ameliorated by surgery. Hope is strong. Only at six months post-op am I allowed to throw in the towel with the hope that surgery worked. I am fully aware of the statistics of actual pain relief amongst endometriosis sufferers with surgery, and by that I mean I know full well that our numbers are low. But I am not one to give up so easily.

I am hoping with this next paycheck on February 26th that I can start up the acupuncture and massage treatments again. My masseuse also has endometriosis. She got a hysterectomy and had no relief even after that! She went to massage school and also had massage therapy on herself. What ultimately helped to relieve her pain was PUSH therapy. My masseuse is certified in Swedish massage, acupressure, Shiatsu, sports massage, deep tissue massage, reflexology, Dynamic Reposturing, and PUSH Therapy.

I also need to get back on the bicycle again. I’ve been a weather wuss, which is hilarious because when I lived in Michigan, I bicycled in 48°F weather all the time. The rain is another issue, I have never liked to bicycle in the rain.

Challenges to continue working on: omit alcohol, sugar and chocolate intake entirely.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Yeah. I still get Mittelschmerz. :(

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

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

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

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

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

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

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

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

Meh.

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

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

Back and forth. UGH.

When the class ended, I bolted.

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

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

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

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

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

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

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

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

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

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

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

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