I Will Not Suffer In Silence

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Good night.

This morning was Staff Development Day at work. It consists of all-day meetings and guest speakers and whatnot. I am still ill but was expected to show up. I wore the loosest fitting slacks I could find, and a sweater. The idea of sitting in a metal chair all day made me wince, but I needed to at least try.

The pain and bleeding had abated overnight, and I was down to a minimal pink flow - almost spotting, when I woke this morning. But I knew that wouldn’t last long.

I packed my heating pad, some extra cloth pads and my medication, popped 600mg Advil, and off I went.

I lasted an hour before the pain and bleeding ramped up again (about 9:30am).

The first inkling I had of renewed pain was actually anal pain while I sat in the metal chair. Even though I had a chair pad, I was very uncomfortable. When I stood up with everyone to go outside, I felt weak. As I watched my co-workers do a music and movement routine outside, the menstrual flow returned. I slowly made my way to the bathroom, and chuckled to myself as a very pregnant co-worker waddled hurriedly past me. She’s in her last month and has to go to the bathroom all the time. I had a mock image in my head of me and her fighting for the bathroom. Ahh, it’s the dark humour that sees me through…

The pain continued to ramp up as I waited for the bathroom. I could wait no longer, so I shuffled to the other bathroom in the building. Yep, super red flow and clots had returned, and I felt I still had a much bigger one yet to pass. I took a full Tylenol 3 plus 400mg Advil, and waffled on whether to just leave work right then or try to hang on and make it through the guest speaker’s presentation.

That’s when the director saw me and asked gently if I could try to make it through the guest speaker’s presentation. So that was my decision. I heated up my corn heating pad and sat back down. I knew that by staying, I’d be toughing out the pain til the meds kicked in. I knew that by staying til the pain meds kicked in, that I’d be too medicated to drive anywhere for awhile. I knew that by being on an entire Tylenol 3, I’d become very sleepy. But I chose to stay, because I knew that there were still two meetings to get through today after the presentation.

Well, the presentation lasted til 11:30am. The director told me it was okay to go home, but I was far too stoned on meds by this point to make rational decisions anymore. I hung out for a bit, hoping that the Internship teacher would be speaking, soon, but the wrap-up from the directors on the guest speaker took a half an hour. During this wrap-up time, I sat by the front door of the school, then moved to the library of the school and snoozed on a pillow chair. The whole time, I was within earshot of the wrap-up commentary by the directors, so I was still there in attendance, just not in the same room with my co-workers.

When everyone was dismissed to lunch at noon, I found my head teachers, my afternoon supervisor and my internship teacher, and got whatever notes and details I could from them about the meetings I would be missing this afternoon. Everyone was understanding and said it was okay for me to go home. I was wavering on my feet, after all.

The pain was dissociated enough by this time that I was able to drive home, even though it was too bright outside and my eyes hurt (thanks to the Tylenol 3).
I only live a mile from the school, but it was a grueling mile to drive when so medicated and brightly lit outside.
But I made it home safely.

I got in the door, changed into my jammies, and crawled into bed. My husband is thankfully working from home today, so he went out on his lunch hour and brought us back some Thai food.
I ate half of my meal, then tried to crawl back into bed, but the pain was returning again. It had been nearly four hours since my last dose of Tylenol 3, so the pain was already leaking through again.

I took my second full Tylenol 3 of the day, tried to crawl back into bed again, and could not get comfortable.

This afternoon is officially the part of my cycle where everything is annoying and uncomfortable and I’m just DONE with dealing with the endometriosis.

Part of it is because I didn’t see the warm sunny days for the past three days. Part of it is because no matter how much time I’ve spent in bed, my body is still unable to hold itself upright for too long. My back aches from all the laying around, and yet I can do little else but lay around. And part of the frustration and annoyance is due to all of the codeine I’ve ingested over the past three days - it’s definitely a CNS depressant, and it does make me super grouchy every month after I’ve been on it for two days.

I hate this part of the cycle, because I turn into a three-year-old and can’t use my words. I huff and puff and growl and cry out ARRRRGGGGHHHH!!!! a lot.

This too shall pass.

If you think that’s bad, you should see me on morphine. Not looking forward to *that* hangover after my second surgery in December.

Two last things I want to touch on before I sign off:

Diet - I’ve caved in and have eaten a lot of chocolate in the past seven days. Chocolate is BAD BAD BAD for me. But I keep rebelling, and I keep demanding a play-by-play of how chocolate affects one’s brain and hormonal chemistry. I once got a play-by-play on what happens to one’s body when one drinks Coke. I would love to see the same thing written up for chocolate. Anyone stumble across it? Let me know! Because until I read it, I know myself well enough to know I will still rebel and eat chocolate.

Pain Management - I’ve been going to an Alexander Technique class as often as I can for the past four months. While it does not help immediately relieve my pain of endometriosis, I am convinced that in the long term, applying this technique will do wonders for my pain management overall.

I have not gone to the acupuncturist since July. I simply could not afford her anymore, and my husband is very skeptical that acupuncture works at all, so he’s reluctant to pay for weekly or biweekly sessions. The Alexander Technique, on the other hand, is offered for free through a Prop 215 dispensary near our home.

As far as any other pain management for “in-the-moment” pain, I have lapsed. I really need a devoted teacher to train me in the ways of mindful meditation and progressive relaxation. But again, those classes were unaffordable, because our insurance would not cover the classes through UCSF, where I’ll be getting my surgery in December. They were billed as psychiatry instead of pain management, and so they were considered out of network, because there are only certain psychiatric providers I can see under our health insurance. It makes absolutely no sense to me at all. :(

I noticed today at work that my breathing came in short bursts because I was hunched over my heating pad in the chair, with every muscle tensed in the moment of pain. I tried to sit up straight to open my lungs and draw some air, but it hurt so much that I hunched over again. Being at home on my yoga mat or in my bed allows me the proper comfortable time and space to do my breathing exercises, but out in public, I just want to roll into a ball and disappear. That is what I noticed today.

I’m sad to not be participating in the staff meetings and classroom cleanup today. But I am, at the same time, much happier to be at home where I can allow the pain to BE what it is, and I can freely express how I feel about being in pain within the safety of my own home.

I now have the weekend to recover, and Monday will start a new work week, hopefully with energy restored by then.

I did not take Plan B.

My period was only a day late.

Actually, it was on time. My period was a day early last month, so I had revised the next due date from November 2 to November 1, but it arrived anyway on November 2.

The mucosa changed colour to pink Monday afternoon, along with increased anal bleeding, which is so common right before every period.

By late Monday night, I thought I was spotting, but it was so faint and intermittent that I wasn’t sure.

By Tuesday afternoon, I definitely was spotting. It was still intermittent though, and it consisted of dark pinkish-brown debris. This continued all day. I needed 1,200mg Advil gel-caps to get through the day.

It was not until 9pm Tuesday night that the first few drops of dark reddish-brown blood appeared.

I was so exhausted that I wanted to go to bed at 9pm, but I forced myself to shower, first. I fell asleep immediately after my shower.

I woke at 4am in pain, to find that the bleeding had increased. The colour was and remains now a dark red.

I woke three more times before my alarm went off this morning - each time to empty the bladder & uterus.

When my alarm went off at 6:30am, I woke to discover the splitting headache and trapped nerve in my left shoulder had resurfaced. Great. This is what, the fifth time since September 14? I called in sick to work between that pain and the pelvic pain.

I took 1/2 Tylenol 3 and 600mg Advil gel-caps with my breakfast, which consisted of two gluten-free waffles with non-dairy butter, and a chopped banana. I had goat milk to drink.

I tried to go back to bed but was freezing cold, despite the fact that the house was/is at 69°F.
The pain increased, and I could not get comfortable. The pain was a steady gnawing in the low uterus and lower back. No sharp stabs, but the gnawing was enough to drive me crazy. I writhed about and moaned and cried. I was easily an 8.5 on the pain scale. I asked my husband for a full Tylenol 3 pill, and I placed three lidocaine patches on me (left shoulder, low back, low pelvis). I got the lidocaine patches from my neighbor, and I definitely want to ask if my doctor will prescribe them for me.

I passed out within 20 minutes of one and a half Tylenol 3, 600mg Advil and the lidocaine patches, as well as doubled-up blankets and higher setting on the heating pad took effect. I slept for about three hours (waking up 4 times to bathroom) before being rudely awakened for the day by my head teacher texting me with a condescending message about my sub being late to work today. As if it was MY fault! WTF!!!

After this cycle is over, I have an appointment to see my dentist for a jaw splint. It will be the first time in 15 years that I’ve needed to wear one. I blame the high stress of the summer courses, the unfinished homework for the practicum, my first year as a teacher intern, as well as my bed and pillows for the resurfacing of the TMJ that I sustained in a head-on auto accident in 1994. I’d managed the TMJ so well all these years, but it’s all just too much right now. We just got a new bed and pillows a year ago, but one year on already, it’s not the right bed for me. It’s too soft once again.
I also have not had the bulging discs in my neck looked at in 3 years. It’s probably time to have another X-ray or MRI to see if the discs have degenerated further.

As to my mental state, which some have fretted over on my behalf, it is stable. I have been remembering to take No-Flush Niacin every day, along with my other vitamins noted here.
I have been less depressed overall in the past week.

Anxiety remains high, and my shrink just refilled my Lorazepam prescription at a lower dose (.5mg) but I have not started taking it again because I fear it was contributing towards my depression. Still, because my surgery is only 44 days away, I picked up the prescription, because in the days just before surgery, I know I will need the anti-anxiety medication.

I am guessing that the minor delay in my period, as well as the intense pain on the first day, is related to either me eating red meat (steak and ham) on several occasions this past month, and/or due to the amount of corn-syrup-ladden candy I consumed over this past Halloween weekend. It’s not something I do all the time, of course, but I do have my lapses.

5:26pm Edit:
I’ve taken Tylenol 3 continuously today:
around 8am (half pill)
around 8:40am (whole pill)
around 2pm (whole pill)
around 5pm (whole pill)

Despite that, I’ve been at 7 or higher on the pain scale all day today. The pain right now is much sharper than it has been all day. No longer only gnawing with molars, now its using its canines, too!

I still have on the same lidocaine patches from this morning and am thinking about renewing them. I also have been gifted almond oil from my same neighbor - I can try massaging that in and see if it helps.

The pain is sharp, continuous and grating. It has been four hours since I took Tylenol 3, and two hours since I took Soma, and yet the pain relief was only about an hour.

 
I woke around 7:30am after having nightmares all night (likely medication-induced). I woke with heavy flow, and ate some yoghurt so I could take my first Tylenol 3 of the day. I intended to go back to bed, but then could not fall back to sleep because of the pain.

I sat in the hard chair for awhile, until I became tired again, and then I set up camp in bed with the heating pads, laptop and phone. I needed the heating pads super hot, and I did something I’ve never done - I put the electric heating pad on the hottest setting. The sharp pain just wasn’t being touched, it seemed. How terrible.

It wasn’t until I took the Soma two hours into the Tylenol 3 that I got any pain relief. I passed out and enjoyed peaceful, pain-free sleep in a reclined position with my heating pads all over me. But as I said, it only lasted an hour, when I was awakened by the need to empty the bladder and uterus. The flow is really heavy, today.

Because of my tipped (retroverted) uterus, when I am laying down, the blood does not flow down in normal fashion to the vagina and on out of my body. Instead, it pools at the back of the tipped uterus, until I wake with pain or a full feeling. The moment I try to get out of bed, I get the gushing forth of all the pooled blood. Sometimes I’m able to make it to the toilet in time. Other times, the blood squirts with such force that it goes through everything and makes me feel like I’m in my own personal horror flick.

So I woke from my drug-induced nap with a fullness, immediate pain, and the urge to urinate. The pain did not get better upon emptying the uterus and bladder.

I *did* find some relief by sitting in the damned hard wooden kitchen chair. But after eating a meal (another gluten-free pizza like the one last night, only with chicken instead of ham), I took a new round of drugs - one Tylenol 3 and 600mg Advil gelcaps. I also took a Vitamin C and a Niacin.

It took an hour and a half all told to do the following:

• Make and eat my meal
• Write this journal entry
• Create the image above for this journal entry (that of course took the most time)

And now the drugs have made me sleepy again. My husband has suggested I sleep on my stomach, to let gravity pull the menstrual fluid down and out, instead of having it pool up like that. But laying on my stomach aggravates the bulging disks in my neck. :(

Good times. Good times.

As is typical when I am suffering from endometriosis pain, I either do not want to eat, or I want only to eat cereals and grains.

On Tuesday, I had moderate nausea for much of the afternoon and into the evening. The nausea came and went on Wednesday. Even when I’m not experiencing nausea, I don’t really want to eat much when I’m experiencing pelvic pain. It doesn’t matter the level of pain.

This morning I had one bowl of “EnviroKidz” Peanut Butter Panda Puffs sweetened corn cereal, with some goat milk. I haven’t had goat milk to drink in awhile - I began craving it this week. I also ate a Trader Joe’s gluten free waffle with Earth Balance “butter” and some sunflower seed butter.

The pain started as I was getting ready for work, so I called in sick. One of my head teachers phoned me as I was texting her - she figured today would be the day I’d be out. She’s pretty on top of things.

I don’t think I ate again for awhile. I know that around 8:30am, I curled up in bed with the electric heating pad on my back. My husband put my two (unheated) rice pads on top of the electric pad to add desired pressure. I konked out and didn’t wake up until 9:45am.

I spent the day in a super tired pain haze, sitting in a wooden chair in the kitchen. The less I moved, the better. Ever since discovering back in July that the pain is lessened by sitting in this damned chair, I’ve made a point to keep the kitchen table clear so that I can use the laptop and also keep doing homework even when in pain.

I do not think it has a lot to do with my posture in the chair - I often find myself slouching in the chair. What I think is happening is that the nerves in my butt and in my legs get compressed when I sit on the chair, and this acts like crimping a hose, and therefore dulls the pain.
I dunno. Maybe my posture is being forced more upright. All I know is, sitting in a hard wooden chair for the past four cycles/months seems to lessen the pain somewhat.

Sometime around 11am today is when the bleeding ramped up from dark brown spotting to dark red flow. It’s been dark red all day. It has been thick, sticky, and slow to come out. I’ve only gone through two light fabric pads today.

I got into my usual refusal of meds funk again today. I finally relented and took 600mg Advil gelcaps sometime around 1 or 2pm.

While trying to get some homework done around 7:30pm, the pain became sharp and continuous, so I put my homework away. This sucks. I got exactly two drawings done for the fifth and last Language Arts binder tonight. I still have 23 more drawings to go. I’m still only half-way through the Math binder illustrations, and I still haven’t even started the Cultural binder. These are all 3 months past due. I spent my day ranting on my endo blog and generally being mentally irritated, and also in moderate pain. I did not want to do homework. I had to force myself to do some.

I also had to force myself to eat.

I ate a bowl of rice cereal (Trader Joe’s version of Rice Krispies) with some Almond milk.
I ate a rice-chocolate candy bar.
I ate a “Yo-baby” banana flavoured yoghurt cup.

I seriously think that’s all I’ve had to eat today, until now.
Right now I’m eating a brown rice tortilla, topped with Trader Joe’s Alfredo sauce, some dill flakes, some basil flakes, some white mushrooms, diced forbidden black forest ham, and shredded goat milk cheddar cheese.
This is the biggest meal I’ve had all day, and I ate it not only because my stomach was finally officially rumbling, but also to be able to take my first Tylenol 3 of the day.

I’ve got 7 Vegetable Soup thawing in the fridge - just took it out of the freezer today. I’ve got some chicken breast tenderloins cooking in the oven to force myself to eat tomorrow.

We’ll see how I’m functioning tomorrow, and whether I can bring myself to eat more than cereal.

Three last things to note:

1) Either it’s seasonal allergies, or 2) I’m getting sick, but there’s a lot of sneezing and thick phlegm going on today. There’s been a lot of phlegm in general for the past week or so. Being a preschool teacher will guarantee that one gets a virus or two or three on a pretty regular basis.

3) My ‘trapped nerve’ in the neck/left shoulder keeps acting up, then settling down, then acting up again, but I’ve refused to continue taking the remaining muscle relaxers. I think there’s 4 left. I’ll take them with Tylenol 3 if the endometriosis pain gets really bad.

Right now, the pain is radiating down the top of my leg nerves, to my knees. So I’m gonna call it a night and layer myself with all manner of heating pads in bed.

This morning my husband confirmed that he would be late to work so that he could take me to the DMV to renew my license. I hopped in the shower and made myself all pretty and off we went. We made it in time and only had to wait 15 minutes, thanks to me having made an appointment. That standing around though, first for the fee paying for the new license, and second for the photo, caused a lot of pelvic pain. There literally was nowhere to sit. I was on 1 Soma and a half a Tylenol 3 plus 400mg Advil, so I was sleepy and yet still in pain. The trapped nerve in the neck was behaving, at least.
Once I got through everything, I was told my new license will be in the mail in 2-4 weeks.

My husband had parked a few blocks away because the DMV was so packed - I overheard a woman telling someone that the Hayward DMV had closed down, that’s why the Fremont DMV, usually a quicker adventure, was now looking like Oakland (packed out the door all day long. So my husband had parked a few blocks away. I shuffled along and my husband was impatient and worrying about getting to work, so I told him to go on ahead of me. We agreed to meet at the half-way point - at the Smog Station across the street. I went in and used the restroom, and met my husband outside. We drove back home and on the way, I took another half Tylenol 3 for the pain.

The bleeding had subsided ever since my shower this morning, which I was grateful for, but of course the continuing pain let me know that more gushing will be on the way.

I got home and rested a bit, then got a burst of energy, so I tackled the pile of homework still waiting to be finished. I got five illustrations done! I hope to finish off Binder #4 tonight for my Language Arts class, and do some more work on the Rationale paper for that class. Any homework I have left to do is LONG overdue, but I will eventually finish it and hand it in, and will still receive a grade. I’ve not stopped being anxious and guilty about it but I’ve stopped freaking out over it. I come to accept the fact that I’ll still be proud of myself no matter when I turn the homework in, and that all of their threats to have people turn in homework in a 2 week turnaround were mostly empty threats poorly designed to try to motivate people through fear. Which is hilarious, considering the book Positive Discipline, which is so encouraged throughout our Teacher Practicum seminars. But who says anyone ever listens to their own advice or reason. This training center certainly doesn’t.

Around 1:50pm, I re-upped my medication and took 1 Soma and 400mg Advil. I have not needed the Tylenol 3 since this morning, because the cramps abated, and the bleeding still had not resumed.

The Soma made me sleepy, and around 3pm or so, I took a nap in my own bed. I slept for nearly two hours, and woke from some crazy dreams, which I’m sure were medication-induced. I can’t even remember them, now. I think it had to do with a classroom.
I noticed that the bleeding had resumed, but only by a tiny amount, and I was still free of cramps. The trapped nerve in the neck however was agitated again, but it wasn’t time to take meds, yet.

I made myself some late lunch just after 5:30pm, and have been on the couch ever since, just resting. I am groggy from the Soma. I am still feeling really guilty for having taken today off of work, even though I have been drugged all day and know that without the drugs, I’d be in a lot of pain. The early part of the day, I had pelvic pain despite no bleeding. So it’s still valid and it’s still reasonable that I called off for another day.

What is unreasonable for me is that my body chose to have the calm between the storm in the middle of the day, which means the Last Gasp might not happen until tomorrow. This means I stress out, wondering if I’ll have to come home sick from work tomorrow, too. FOUR DAYS! I have NEVER taken four days off work from this job because of the endometriosis. Ugh. Is it because of the new endo growth? This is month two of really heavy bleeding. Is it due to perimenopause? Is it because of leftover stress from the summer training classes? Four Days!!! I don’t even usually take THREE DAYS off in a row like this. It looks so very bad on the résumé, so to speak, and makes me consider whether I should file for disability again. Bah. I don’t miss 14+ days of work in a month, so there’s no sense in filing. They will reject me again. I really hope this job does not fire me for my increased absences. I cannot afford surgery until spring or summer, so absences will happen every month. :(

Something else I accomplished today - I checked back through my diary to see when the last time was that I took Soma when also dealing with endometriosis cramps, and it seems like it was in 2007.
I also found out from my own Things I’ve Tried page that “Soma dissociates me so nicely from the pain but leaves me moderately to severely depressed after taking it for even one day, contributes vastly to weight gain“.

What was I saying recently about how some things are best forgotten? In this case, it would have done me good NOT to forget. Now I have to monitor myself for further depression. I have already been gaining weight - I’ve gained 6lbs in the past month, and my whole body is feeling it. I don’t know if you can relate but I swear, my FAT hurts in my hips and arse. No joke.

Let’s hope I can undo the trapped nerve in the next couple of days, so I can get off the Soma again. But DAMMIT, it DOES dissociate me so very nicely from the endo pain. Blah.

My period came yesterday and I’ve been home and bedridden ever since. On top of it, last night my neck/shoulder went out because I slept wrong. I wanted my husband to stay home with me today but he wouldn’t. I hitched a ride to the doctor via my neighbor and got some muscle relaxers. I took a whole Tylenol 3 and shuffled home because I did not have exact change for the bus and can never remember how much it is, anyway. It is a 0.4 mile walk, but a bit harrowing when in pelvic pain and trapped nerve pain in the neck/shoulder.

The thing I’ve been saying to my husband since last night is that I just want to be put out of my misery. I told him repeatedly that I need a caregiver, but he needs an equal partner. I told him for that reason, the marriage probably isn’t working out in his favour. He insists he wants to keep me around, but I don’t see the point. I don’t want to be disabled. I don’t want to be needy. My body is broken and has other plans for me.
He won’t take me out back and put me down, though. I told him he’s selfish for that.

Then again, I’m selfish for wanting him to do the deed. But I won’t do it, myself. I told him it’s a really good thing I’m seeing a psychiatrist, today, because between the trapped nerve in the neck and the ongoing/worsening endometriosis pain alone, I NEED the psychiatric help right now.

My psychologist has ideas about what my diagnosis is, but I’m going to wait til the psychiatrist has also evaluated me before I start educating myself on how to care for myself with yet another diagnosis.

And a large part of me wonders why I keep seeing specialists for all these problems. It does nothing but take my money and insurance, and makes me miss more work because of the appointments, and none of this has actually HELPED or CURED me, anyway. I should just go on like all the other broken people in the world, until I decide like a lot of them that I’m DONE and just hit the reset button on my own, in peace.

On Friday, September 10th, I started feeling low pelvic discomfort/fullness. I had the need to ‘check’ myself all day to see if menstruation had begun.

Saturday morning, my husband and I were intimate, and I experienced pain as I often do. :( I noticed bright red bleeding right afterwards. I assumed this was just the little pool of blood that sometimes leaks out from the cervix and sits at the end of the vaginal canal right before menstruation begins. Within half an hour of intimacy, I experienced uterine cramps which lasted all day. However, as I had hoped, the bleeding turned to spotting quickly enough, and then stopped by afternoon. For the pain, I took 600mg Ibuprofen in the late morning, then took half a Tylenol 3 and more Ibuprofen in the late afternoon.
My husband and I went to a housewarming party that night, and I brought my heating pad with me. I did need it. :( I took another half a Tylenol 3 around 9:45pm, and got all the codeine effects - dizziness, fuzzy-headed, super sleepy, heightened sensitivity to light and noise, etc. Those things don’t mix well with a very alcohol-ladden house party. We were home a few minutes before midnight…on a Saturday night…because of my pain. LAME.

The night out, despite the pain, was not too bad. I had my usual bout of social anxiety, and I was a bad girl and took a few sips of whiskey (it had honey it it, how could I not?). As we were saying we wanted to leave, the hostess said she needed to re-introduce me to a friend of hers, who also has endometriosis.

So I talked with another endo sister and stayed awhile longer at the party. ;)
She highly recommends Dr. Cook down in Los Gatos. He’s the guy who only accepts one’s money, not insurance, but the woman I talked to last night is three years post op and says the pain has not returned. She had stage IV endometriosis, and had to have one ovary removed, as well as part of her vagina, her cervix and her uterus. She also had to have part of her bowels resected, because of the endometriosis. Really bad stuff. I asked a lot of questions about the one ovary thing - since I am convinced that I’ll have to lose my left ovary eventually (this is twice now that it’s been pulled by adhesions to my uterus).
She told me that because she had so much removed, her body freaked out. She told me that although the endometriosis pain disappeared, she had to contend with nerve damage on her bowels, and all of her organs trying one by one to shut down on her. She ended up with asthma and skin lesions and extreme fatigue and all sorts of stuff, which took over a year to clear up, and only with the help of some kind of metabolic therapy. She said she was dying a slow death. To this day, three years later, she still has issues with either keeping in or letting out a bowel movement, I forget which.
Despite such horrific issues, she says she’s glad she had the surgery.

My opinion is: given the choice between knowing the behaviour of my illness and not knowing if I will die from all the pain and suffering caused by a surgery such as described above, I will always choose my illness. Given the choice between a one year recovery and my current illness, I’ll take my current illness because I miss less time off work and thusly less money. Given the choice between possible permanent nerve damage from surgery and my current illness, I might prefer my current illness. Depends on where the nerve damage, is, I guess. I don’t think I would like to have to live with bladder or bowel control issues for the rest of my life. That stuff isn’t supposed to happen until I’m elderly. :p

For over a year now, I’ve been going on about needing excision laparoscopy to properly treat my pain, and now that I’ve talked to a woman in person who has had excision done, now I am chickening out. This is silly. I can easily get just as much nerve damage from electrocoagulation surgery as I can from excision surgery. Hell, I can get organ damage just from the laparoscope going into me. So this fear stuff needs to stop.

…there’s something else. When I did a search on my blog for how many times I mentioned ‘excision’, I read back through my entries and got really mad. You know, the human brain forgets things, and there’s something to be said about that. I feel like had I just left all those feelings forgotten, then I wouldn’t be so angry as I am right now with doctors who wrote me off, with all the time I waste trying to find the right specialist, only to be slapped in the face by people saying stuff like, “DO YOU LIKE BEING IN PAIN? THEN GO GET ANOTHER ELECTROCOAGULATION SURGERY” or “I TOLD YOU ABOUT THIS PERSON A YEAR AGO, WHY DIDN’T YOU LISTEN TO ME”.

If I hadn’t read through my old blog entries, then I might not be so mad as I am right now at my husband. But the thing is, forgetting also destines one to repeat history. And this is recent history - the blog entry I’m referring to is from February - only seven months ago. We’re in a cycle, and it does no good to keep forgetting that the finances issue is a HUGE issue. I DID go to school this summer after my husband insisted that I go, and insisted that our tax return money would cover it. When the tax return money ran out towards the end of the summer and my husband had to foot $1,000 more of his own money, all hell broke loose. We’re still reeling financially and emotionally, and then I get told I must have another surgery ASAP.

Back on February 4, I said I could EITHER have surgery OR go to school because we don’t have enough money to do both. This was before our tax return. Once we got the tax return filed on February 20, my husband said I should go back to school, and I agreed. We both thought at that point that surgery could wait.

Who knew that surgery would be deemed necessary the same year? There was no way of knowing that.

But the same frustrations I expressed about our finances are still at the forefront of our relationship today. We did have that talk back in February, and he did say that he would support and help me and that he would stop being wishy-washy. The one point we did not cover was him also promising not to be grudging or angry when I need money. He never made that promise and his behaviour is still that of grudgingly handing over money when I need it.

Last Wednesday, when I got the surgery summons, I told my husband we needed to talk about finances and planning for the surgery. Friday night, we had that talk. Once again, we got into our modes. He wanted to pledge chivalrous yet ambiguous support for me during and after my surgery. I wanted to run the numbers. I broke out the calculator and my recent timecard and compared it to my earnings before summertime to get an estimate of money that could be saved between now and December, while telling my husband about bills and groceries and things that would need to be taken care of. He sat there, eyes glazed over, zoned out, then began playing a video game on his iPhone.

While running the numbers on my end, and noting his lack of engagement after he initiated the talk, I kept working but did not look at him as I spoke, telling him, “Here’s what I need for you to be doing. I need you to go through your bills and expenses and the last three months of the grocery bills, and tell me roughly how much money you have at the end of the month each month, so that I know what you have to contribute towards the surgery, since you said you would in fact take care of me during and after surgery.”

He stopped playing his game, stared at me for a moment while I continued to work without looking at him. Then he got up in a huff and stomped off to the computer room to run his numbers in angry silence.

And this is how it always goes. He’s all talk and then when it comes time for action, he gets his panties in a twist.

He DID do his numbers and we DID compare things.

The end result of my own assessment was that I cannot afford to save money for surgery to cover the co-pay (up to $1,400 out of pocket) AND any post-op care, AND bills that will still be coming due after surgery while I’ve been off work without a paycheck.

My husband’s assessment showed that he was left with just over $200/mo out of his paycheck, if he had to continue to cover all of the groceries, cat maintenance, and all of my bills post op.
I asked if my husband could set aside money out of his paycheck every payday from now until mid-December in order to have that padding available - to cover all the expenses for up to 2 months post-op. He shared that he has about $1,476 left over after bills are paid each month. I asked if he could carve out $400/mo from now until mid-December (leaving him with $1,076 total in the bank each month, but saving $1,200 to cover me), since my bills due on top of everything else are about $316/mo ($632 if he had to cover me for 2 months).
He replied that he could logically swing it, but would feel uncomfortable doing so, in case other emergency expenses came up. He said it would be cutting it too close.
The end result of his assessment is that he cannot afford to save money now to cover me post-op in December.

This pushes my surgery out to either spring break, which is one week optional work in March, 2011 (holiday daycare week), or sometime in the summer 2011, which is a fixed amount each employee can work during the summer, anyway, due to low enrollment.

At first, I was silently very angry with my husband’s refusal to save $400/mo from now until December. But I calmed down and realised that yes, $1,076 really is in fact in the red for two people, should any tiny emergency crop up. It’s just not doable, and I have to accept that.

After doing our assessments on Friday night, I did not feel any better about how we both emotionally handle things related to finances. I still do not trust that my husband will make good on his word to be there for me. It’s all on me to save the money towards the surgery co-pay and taking care of myself after surgery. I have to start saving now.
When we got married, we agreed to keep finances separate. We only got the joint account to pool money for the honeymoon. That was the only reason we got that account. And even then it didn’t really work out so well - I still put a bunch of shit on my credit cards, and used my money, and he still used his money. The fact remains that he is very guarded over the ginormous amount of money he makes in a year, and is resentful that he has to foot all of the rent and groceries. He makes roughly sixty-five thousand dollars more than me each year, and so when he has to split his income in two to support both of us, he gets pissy.
I make sixty-five thousand dollars less than him each year, so when I easily run out of money and need something, I get all pissy when he won’t just provide the money. I don’t look at it as a spoiled princess or entitled bitch thing. I look at it as a fracking charity thing.

Another thing I found out from my assessment is that missing two or three days of work each month loses me roughly $4,000 every year at the current pay rate. At my highest earnings in the dotcom days, I was losing up to $7,200/year of my paycheck because of missing work due to endometriosis. I posted a study about this on the main Living With Endometriosis site back in April, 2010. My personal cost is much higher, but I don’t know if their costs were net pay or gross pay. My assessment was gross pay.

I still feel the same as I did back in February: “I think it’s best that I just go back to pretending that this is what all women go through every month, and stop trying to treat something which ultimately probably can’t be treated, anyway. I won’t die from my condition. No matter what I’ve tried in the last 23 years, nothing has worked anyway, so why bother to continue trying to fight it. I don’t have anyone but myself to help me financially and emotionally, anyway. Same as it ever was.”

My husband had woken me up about two hours after my last journal entry, to say he was going to take off to game night, unless I needed him to stay with me. I pleaded with him to stay. He said he would, but that he just didn’t know what to do if I was going to spend the rest of the day sleeping.
I told him that made me feel guilty - that he should just go to game, then.

It was clear he didn’t want to leave me alone, but he didn’t want to not be with his friends. It took me about 20 minutes or so to rouse myself out of my pain and pain medication stupor, but I told him “why don’t I just go with you to game, then?”

He liked that idea.

We collected my heating pads, my meds, the laptop in case I wanted to blog or attempt any homework, and two books; one for school and one for pleasure.

We got to our friend’s house and to my dismay, it smelled like smoke. I have a smoke allergy/chemical sensitivity. I was grouchy at my friend C - “WHY DID YOU SMOKE IN YOUR HOUSE.”
C replied, “Yeah but that was hours ago.”

I resigned to my fate - I was stuck here. My husband was already setting up the kitchen table for game night.

I was told where I could make myself comfortable, and I was told that a friend J, who lives in that house, was downstairs with a burst ovarian cyst. I didn’t want to disturb her unless I heard her crying out in pain, so I stayed upstairs in my own little world of pain.

I tried to heat up my heating pads, only to be reminded that they do not have a microwave in that house. I was directed to a big heating pad and was allowed to use that.

The offending smoker friend also helped set me up on his wireless network, but the moment I was set up, I was suddenly exhausted again and so I put the laptop away. I couldn’t even keep my eyes open long enough to hold conversation with anyone, watch TV, or read a book.

A third friend, also named J, who lives in that house, was also not feeling well. He sat in the living room on his laptop the entire night. He’s had spinal cord injury and had surgery after surgery to cauterise nerves. He thinks nerves are growing back or something, and is in a lot of pain again. I gave him one of my Tylenol 3 because he did not have any Norco on him.

At one point, around 8pm, the stabbing right side ovarian pain returned. I ended up on the floor, moaning in pain, rocking to and fro, with the heating pad. I was on all fours, then on my back, and then I settled into an arm chair w/ ottoman for the rest of the night. Their crazy cat October decided to be nice for once, and curled up on my tummy and purred all night. I was told she only likes women, and likes women best when they are in pain - that is the ONLY time that cat is nice.
Crazy cat.

So, the pain I had on Sunday lasted through until after 10pm, despite the fact that the bleeding had subsided again. My abs and ribs still felt bruised all that day.

I got home, showered, changed into my bedclothes, and went to bed.

Woke up Monday morning pain-free and got ready for my first day back to work. I was still spotting a little. I decided to try riding my bike to work, but as I went out the door to go to work, the pain set back in, and so I abandoned the bicycling idea and drove the measly one mile to work, instead. Glad I did. I needed my energy at work to move stuff around and help set up for the new school year.
I required a total of 800mg Advil to get through the day.

Got home and was very tired, but went on to my psychology appointment. I’m seeing a shrink again ever since I had a major depressive episode at the end of July. I’m still trying to figure out if it was JUST all the stress I have been under from school and finances, or if the Cannabidiol I tried for pain management set off an even worse episode of pre-existing stress and depression.
I evened out by August 18, but that was three weeks of pure hell from one menstrual cycle right up into this next menstrual cycle, which started on August 19. I am still on anti-anxiety meds (ativan).

I spent the rest of Monday evening hanging out with my husband, making and eating dinner, and watching TV. No homework got done on Monday.

Today is a new day - I start the clock so to speak - I have 21 days til next bedridden. Today I will go to work (not sure if driving or biking yet - it’s supposed to be in the 90s today so I guess biking would be better on the ozone), and when I get home, I will force myself to do some more homework.

In about 8 days, I will have Mittelschmerz - so the middle of next week - the first week the children are back to school. Hopefully it will go easy on me while I navigate my first week in the classroom.

One last thing - about last week sometime, I developed a cough again. So this is the second virus / cough since July 18 that I have caught. And now I’m going to enter a new school year with preschoolers. I expect to be sick continually in one form or another until December. I am pounding Vitamin C and Zinc and all the rest of my supplements, and will be back in the gym by no later than Thursday this week, once the heat wave cools down. Today is Day 2 of the first heat wave of the Northern California Summer.