I Will Not Suffer In Silence

A New Year is supposed to be a time of New Beginnings, New and Wonderful Things.

Instead, the year starts off with a horrible diagnosis, hate-filled and self-serving drama, more clashes between “protesters” and police, and well, the same old same old as far as my endo pain.

The horrible diagnosis is Stage II squamous cell carcinoma for my father. The news was received on January 4th. I spent 48 hours trying to get as detailed information as I could, but it was all couched in panic and high dramatic emotion from my father and step-mother. I keep being told “it’s melanoma, but the doctors say it’s not.” Well, squamous cell carcinoma is by definition non-melanoma skin cancer. It’s dangerous if left untreated, and the doctor did tell my dad that if he’d gone for a few more months, it could have been fatal. My dad and his wife are acting like it IS fatal.

It’s been hell on all of us, emotionally, to get dad to calm the hell down and take charge of his emotions and get some courage up for the treatment ahead of him. He’s chosen to take an experimental chemo treatment called Efudex for two weeks, and then he will have a Mohs surgery on February 27 to excise the cancer, which is on his temple. He’s already had upwards of 16 other cancerous lesions excised and frozen off the surface of his back, chest and hands. Now what remains is the one on his temple. He fought for over a year to get treatment, but his small-town doctor did not take the lesions seriously, and kept telling him it was psoriasis.

The hate-filled and self-serving drama relates to endometriosis support groups on the Internet. There have always been a number of splinter groups forming once a new group springs up. There have always been nasty women saying nasty things about other women, going so far as to blame women as being attention seekers and drug addicts. YEAH, JUST WHAT I WANT IN A SUPPORT GROUP. GO HUMANITY! WOOO!!! This is nothing new – it’s been going on since before I even discovered online support groups in 2007, after my first surgery.

There’s (again) been a rash of women who opened up and admitted to being suicidal, ever since an endo sister did try to end her life in December, and gained the top headlines so to speak in some endo forums as a result. The nasties lashed out, saying the others who were suicidal were just attention whores. Can you believe that?!?! OMG. Here you are, finally able to say, YES, ME TOO, I’VE BEEN IN A DARK PLACE, PLEASE HELP ME, and what you get in return is being called a drama queen attention-seeker.

Then there are those who are actually bitter about not getting replies to their posts or questions in the forums in a timely fashion, who instead of re-posting the questions until they do get an answer, simply go around bad-mouthing the group for not paying attention to them. GROW THE HELL UP, PEOPLE. There are hundreds of people on some support groups, and thousands of people on other support groups. If you post something and nobody replies to it, think of the following:

• What time of day is it – maximize your posting for a time frame in which most people will likely be on the computer. Keep a world time zone chart handy!
• Either bump or post your question or story a second time if you have gotten no feedback the first time.
• Write to an admin on the support group to elicit further help to getting your story or question some air time.

It’s not rocket science. People need to stop being so selfish and childish. The support groups are made up of people who suffer from the same illness – not of 24/7 on-call doctors and psychologists FFS. We are there to support each other, but we are all in pain, we are all enduring family stuff, we are all trying to get work done in some fashion, and then we come to the support groups online to help ourselves and others like us. The ones who are being abusive need to be expelled.
It’s a good thing I’m not an admin, and I have been asked plenty of times to help admin different lists over the years. I’d have kicked off hundreds of people by now, I swear. I have gone through many online support groups; they start out well enough but almost always devolve into a damned Lord Of The Flies novella. It’s sickening. You could be reading this rant in the year 2000 or in the year 2027 and the same frustration will still be there. Humanity often remains so very disappointing to me.

The clashes between “protesters” and police reference is regarding the continuation of the “Occupy Wall Street” movement, specifically the branch of it that is going on near where I live. Here we are, three months later, aggressive protests and police brutality still happening, and still no direct words from the President of the United States. He was mic-checked in November in New Hampshire, but again, spent but a sound byte of time on the entire movement:

The Governor of the State of California finally broke his silence on the occupy movement on December 27, when he said he will do everything in his power, just shy of bringing in the National Guard, to keep the Port of Oakland open, should the protesters try to shut it down a third time.

Governor Brown also said, “I think the Occupy movement is focused on city halls and universities and maybe other institutions…It’s an expression of disapproval and discontent, but it’s not incorporated into the political process at this point, at least not the political process where you vote Yes or No on an initiative.”

The same old same old as far as my endo pain is just that. I’ll write up a separate journal entry, as this entry was mainly to blow off steam.

Holy Moly, how did we roll into another year already?!?

Rather than chronicling all the bad stuff, let’s catch you up on some good things:

My uptime (no endo pain) began on December 14, and continued for 15 days!
December 22 was the last day of work for the winter break, and I got to spend good quality time with my husband and our local friends. I don’t normally celebrate winter holidays with family, because I live clear across the country from them, but I did get to talk to my family by phone. I even got to attend a party with my Michigan friends via Skype!

 
Giftmas, as I call it, was happily low-key. I am quite loved by my students and workplace, as there were a great many gift cards, hand-made gifts, and other wonders! From the gift cards, I received a bounty of new books to read. My husband got me a digital EMF detector, because I like to ghost-hunt, and because I’m also sensitive to EMF, so reducing it or avoiding it early and often is key for my well-being!

We spent Dec. 25 at a friend’s house; they are like family, so it is a relaxing, cozy environment. We went dancing on Dec. 26, and for New Year’s Eve, we went to two local bars to celebrate with friends and acquaintances.

 
My husband and I also watched a lot of Rome – an HBO miniseries. Our friend loaned it to us on DVD and we’ve been enjoying the hell out of it. I’m a bit of a history nerd, so we’ve been watching the series with the historical captions function activated. :)

During the endo uptime…actually from day 1 of the endo uptime…the discs in my neck pinched a nerve, and I have been dealing with that since December 14. It was the second time in a month that the discs pinched on a nerve in my neck; the same happened back on November 20, but the pain only lasted 3 days before righting itself. The pain this time was so bad for so long, that I missed 3 days of work. I spent all of winter break moderately to heavily medicated on muscle relaxers, Tylenol 3 and Advil. The doctor wants to do cortisone injections, which I put on hold until I got the results back from allergy patch tests to see if I have a sensitivity to cortisoids (I don’t, according to the patch test). My Ma had a really bad experience with cortisone treatment, and she and I are both highly allergic to penicillin. Because I share similar allergies to hers, I wanted to be tested before undergoing further treatment.

The joke during this time was that although I had pain, it was nothing compared to the endo pain!!

Excerpt from Facebook:
Definition of stubborn: driving self to doctor & errands on Tylenol 3 & Soma (pinched nerve is worse after trying new neck pillow). HEY, this is nothing compared to endometriosis pain! lulz
-December 30, 2011 at 1:05pm

I’d love to have muscle relaxers for each endo flare, too, but A) they’re addictive and B) they make me fat and depressed, so I usually steer clear of muscle relaxers unless the discs act up.

Of course, now that I’m cleared for cortisone injections, my neck decided to ease up! It was the longest period of time that I can recall pinched nerve activity. It was pretty brutal.

On Dec. 26 and Dec. 31, I wore eyeliner when I went out with friends, but for some reason, my eye hated the same eyeliner on NYE. Two days later – that’s today – I developed pink eye. It’s the SIXTH TIME since October 3, 2011 that I’ve had pink eye, all of which started around the time I began using Maybelline Great Lash mascara. I got a chemical and environmental allergy panel done at the end of December, and it did come back as suspect for sensitivity/allergy to cosmetics ingredients. I say suspect, because one doctor said YES it’s positive, and one doctor and one nurse said NO, it’s inconclusive. Damned doctors. No, of course there was no blood test – only skin patch test.

 
So although I’ve been sick with one thing or another throughout December, I am still happy to report 16 days of consecutive uptime between menstrual cycles. There is positivity in there, I swear!

I also went to the dispensary during winter break, which has become famous overnight, as it’s now part of a television series called Weed Wars. I re-signed up for acupuncture, reiki, chiropractic, yoga and the alexander technique. Most of these services are now experiencing a 3 month wait due to recent fame for the dispensary, and of course it’s wall-to-wall people at all hours, now. I’m really happy for the dispensary, and also feeling a bit selfish for wanting services sooner. ;)

I will finish my New Year’s entry with a list of goals for 2012:

• Go sugar-free again.
• Do a better job from abstaining from alcohol again (I know, that few-times-a-week glass of wine is awesome tasting and relaxing, but may not be doing your cramps any good!)
• Be serious about gluten-free baking at home, so I cut down on processed foods.
• Start biking to work every day again.
• Start posting more positive entries – what I can do, as opposed to what my limitations are. It doesn’t have to be one or the other, but just not all negative chronicling all the time.
• See if I can manifest the idea I had recently to gift fellow endo sisters, to share positivity and love.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

I’m due for my 5th cycle since surgery 3 months ago. Why so many cycles, you may ask? I have a 25-day cycle. Sometimes I get my period twice in a 30-day stretch. I call these my ‘blue moon periods’. This month may end up as a blue moon period if it arrives today, cuz it certainly feels like it’s going to be a day early.

Whether it arrives today or tomorrow doesn’t matter – it’ll be crappy either way. Arriving today means I had two periods in the same month. Arriving tomorrow means it happens on April Fool’s Day. HAR HAR.

I’ve been experiencing moderate low back pain and intermittent sharp uterine cramps for the past three days. Starting a week ago, my ass decided to gush bright red. This is nothing new and has not changed despite surgery, and despite the surgeon saying she found no sign of endo on my bowels.

I have eaten like complete shit for the past three weeks, and moreso within the past week, because I have been stressed the hell out. I have subsisted on coffee and chocolate and cheetos. There is going to be a heavy price to pay for that. I woke at 3:30am with cramps so strong that I needed half a Tylenol 3.

We’ll see how this cycle goes…

Wednesday, January 19, 2011

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

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

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

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

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

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

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

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

Five days ago, on the same day I got bad news from my ultrasound, my sister-in-law had an emergency laparoscopy for a 6cm ovarian cyst. I didn’t find out til my Ma called, two days later. Ma still doesn’t really understand what all a pelvic laparoscopy involves, but she did go over and see her daughter-in-law to help out, since she only lives a mile away.

I gave my sis-in-law a call Saturday morning, and we talked about the surgery and how recovery is going for her. Apparently while under the knife, the doctor found endometriosis and ablated what he could. She still doesn’t know what stage of endo she is at – she says the doctor talked to my brother (her husband) after the surgery. It kills me that my brother never shares what he’s told, even with his own wife…in this case about her own body. I dunno, maybe the doctor didn’t stage her. Mine just told me I was ‘moderate’ and I had to go back and confirm whether she meant ‘stage III’ or not (she did).
We talked about endometriosis, and how this unexpected label might affect her from here on out. She never thought she had endo – she knew the first day of her period was always very bad, “but not like what you go through”, she told me.

You know, I really am uncomfortable with all the women who have pelvic pain who tell me, “but it’s not like what you go through.” Here is a woman who was diagnosed with the same condition as me for cryin’ out loud, so how can she still sit there and say, “but not like what you go through”?
I had to remind her that her pain is very real and valid, and it doesn’t matter if she can work through it or has to take time off work for it, even for one day, it’s still bad pain and NOT NORMAL.

I haven’t been able to feel that anyone out there has really understood that, yet.

She’s hoping she won’t have any further pain or complications, and that the ovarian cysts won’t happen again. She declared herself all fixed up and good to go. I rejoiced with her, because I want to think that she and the doctor is right.

Her own mother had a string of pelvic surgeries for chronic pain and complications in the 1980s, and ended up getting a hysterectomy years before menopause. Here’s hoping the same does NOT happen to her daughter.

August 25: my husband and I were intimate.

August 26: Intermittent vaginal and pelvic pain all day – ever since intimacy the night before. This is common, since I am clinically diagnosed with Dyspaneuria, and it’s depressing.

August 31: I was scheduled to see the pain management psychologist at UCSF for our third visit, but I cancelled it because my husband’s health insurance carves out psychological treatment to some third party company called Magellan, and therefore my pain management clinics at UCSF are NOT covered. This has thoroughly pissed me off to no end, and I spent a large part of July and August in rage over it.

August 31 was also Day 8 – when mittelschmerz was supposed to hit, but I did not! I made no mention of pelvic or ovarian pain in this blog or on Facebook, or in my iCal endo notes. So this is awesome, I did not have mittelschmerz this time!

September 5: Right side ovarian stabbing pain, and low back pain – by evening. Took 600mg Advil and one half T3 at bedtime. We had driven down to Southern California (8 hours) to visit my husband’s ailing grandmother, and it was 95°F (35°C). Grandma refused to turn on the air conditioner or the fan because she was convinced it was already on. I swear we got heat exhaustion – both of us nearly passed out at varying points of the afternoon. I finally turned on the fan, and when my husband’s aunt showed up for her evening routine of caring for her mother, she switched the unit from fan to air conditioning.
I think the long drive down there is what set off the ovarian pain, or it could have been the mocha I had that morning (caffeine).

September 6: Continued right side ovarian stabbing pain all day. Took 1,200mg Advil and 1.5 T3 over the course of the day – but it did not mitigate the sharp stabbing pain. I was in pain during our second visit to grandma, and all the way home.

September 7: back to work – the ovarian pain was intermittent and mild throughout the day – possibly because I was back to moving around again, the pain was lessened?

In other news, the light cough I developed around August 18 left again by around September 2, and has returned again as of today. I’ve begun to wonder if it’s my newest nervous tick, or if I really have been getting virus after virus since July 18. The last two have been just a mild cough, though yesterday I ran a 99°F temp all morning. Ah, the wondering that I do. My husband and I talked about this on Monday – the so-called Twenty Questions I do to myself all the time with the endometriosis, and how it never really gets me anywhere. Sure, my questioning of my diet led me to discover the gluten, yeast and sulfite sensitivities, and it helped me to realise that cow’s milk, coffee and corn syrup set off immediate pelvic pain, but more often than not, it’s just too hard to really know what causes the pain, and yet I punish myself with this never-ending cycle of guilt.