I Will Not Suffer In Silence

I’m all better as of today. Well, except for the fact that my lower back pain has moved to my mid back, but I think that’s cuz the baby’s demanded to be held more often than usual because she’s sick.

My endometriosis clock resets for 22ish days.

The baby however is not better. Today she puked in my lap. Good thing I bring a change of clothes with me when working with children! Later, she peed through her diaper, then right after I changed her diaper, wiped her down and put new clothes on her, and sat her down, she filled her diaper with diarrhea, which spilled out everywhere. I’m definitely investing in surgical gloves, now.

There was also a tiny bit of a bloody nose because she’s so stuffed up and then sniffly and then stuffed up again, and she cried moreso than usual because she’s sick, and there’s more drool than usual because she’s teething.

So today I’ve had every body fluid spilled upon me except for sweat.

Did you know that people with Endometriosis also always have weak immune systems?

If I’m not sick by the end of the weekend, I will find a deity to praise.

August 26, 2008 Edit: Well I think I managed to stave off The Sick, so I closed my eyes and pointed to a random deity to praise. That deity is Rauni. :p
Lots of Vitamin C and Calcium/Magnesium/Zinc vitamins have been my friend over the weekend.

I’ve already heard that red meat makes the endometriosis pain worse, but now I’m hearing that cows are being fed potato chips and M&Ms (which are made out of corn syrup, which personally makes my pain much worse)!!!

Thanks to my friend Johnny for telling me about the video!

Edit The video was taken down but you can read the story here.

The bleeding and cramps set back in at 11:20ish in the morning, about half hour after the baby woke up from her morning nap.

I was fighting to maintain.

600mg Ibuprofen didn’t help so I took half a Tylenol 3.

The baby was contained and happy in her exersaucer, and I was thankful that I’d already set up the play mat and pillows as well. I figured she’s got two places to play today in the living room so everything would work out, right?

At 12:07pm I took it back. She started crying so I took her out of the exersaucer but she didn’t want to leave my arm. Wouldn’t sit on the play mat. Wouldn’t just sit on my lap. Wanted to be held and rocked. Which is reeeeally painful for me right now. Finally she just broke down and cried and rubbed her eyes while I held her and rocked her, so that signaled naptime. Weird since she’d only been up for an hour but then again, she is teething.

So I put her in her crib, and after half an hour, she cried herself to sleep.

I checked on myself in the bathroom and passed a huge.. HUGE clot. That’s what all the pain was for.

The baby’s mom told me the baby’s only had 3 naps in the past two days. Compare with the usual – 3 to 4 naps each day.

Poor thing. She’s got a runny nose, a cough and two first teeth. She’s probably as miserable as I am.

Here’s hoping that’s the last of it for the next 26 days. I’m back at work today and taking it easy because I still have lower back pain. Thankfully I only missed one day of work this month. Missed two last month from the pain. In this case what helped is the fact that I only work Tuesdays – Thursdays. Otherwise I’d have missed three days last month and two days this month.

Taking it easy on this job means not carrying the five-month-old around so much if I can avoid it. We usually go through the house naming objects twice a day but we can resume that tomorrow. Not sure if I’ll be able to take her for a stroller ride but if worst comes to worst, it’ll just be around the block and then I can set up her exersaucer in the backyard.

The baby is down for nap at the moment. I may nap as well.

This morning around 6:30am the lower back pain returned and was moderate enough that I called in sick on a hunch that the pain would worsen. Well, I had very little pain and bleeding all day.

Until around 3:45pm. Right after I finished lunch. I had jaw dropping, gaping mouth, eyes wide, no utterance, no breath … sudden onset of severe pain and gushing blood.

I took two Tylenol 3 and knew that I must wait as many as 30 minutes for it to kick in.

I knew that nothing could be done until that time except to start the relaxation breathing. Went and laid down on the bedroom floor. Did the ‘turtle’ pose. Then laid on my back and breathed. And breathed. And focused. And tried hard to relax from the head down.

4:21pm – the drugs just kicked in to make me high but hadn’t gotten rid of the pain, yet. Though the pain was less sharp than it originally was, it had radiated down to my knees (this is common).
I suspect eating carb-o-rific lunch without protein is the culprit. I had gluten-free macaroni and cheese, with some white grape juice to drink. My blood sugar likely became unstable, creating a hormonal reaction within the pancreas, which set off the cramping because the uterus is hormone-rich and is susceptible to reactions from unstable blood sugar.

It helps if I have something to suspect. If it’s just pain out of nowhere, it’s too depressing for me and lends to me feeling like a terminal patient.

4:21pm – beginnings of clot coming out. Now I know why the pain was so severe.

4:30pm – passed clot. Still heavy bleeding. Still in a lot of pain. Wondering if there’ll be more.

4:38pm – remembered to apply heating pad to coax the rest of the gunk out, and laid down in bed.

Edits begin:
‘Passed out’ from the medication when I laid down.

5:30pm – woke up, another clot had passed. Fell back to sleep.

7:54pm – woke up again. Everything finally tapered off. But now it’s two hours before bed and I’ve had this three and a half hour ‘nap’. Good times.

I spent all day yesterday in bed, and all evening on the couch. I actually lost track of how much Tylenol 3 I was ingesting. Whoops. So today I start off with Ibuprofen 600 when the pain ramps back up again.

Right now the pain is manageable, but I’m a stuck pig. My eyes have that opiate hangover feel to them. I want a shower but would be in danger of falling. Right before the pain comes back, the symptom is usually weak, shakey legs. I’ve fallen in the shower before. Getting one of them shower chairs wouldn’t help – it’s the stepping into or out of the tub that’s the danger. I’d need a walk-in shower or one of those posh walk-in tubs to feel safe when I’m ill. But for now, warshing up old style will suffice. ;)

In the comfort realm, my cats have been very kind to me as usual, sitting on my lap purring, or laying squished right up against me. At one point I was bookended by my kittehs.

Ok, pain ramping up. Need to eat something, take the Ibu and get the heating pad.

It’s still easier for me to refer to my illness as ‘george’ when I am discussing the illness, hence the subject line. It’s simpler to say ‘george is late’ than to say ‘i started bleeding later than expected’. It’s more polite in a way – people don’t want to go right into a conversation hearing about blood. But hearing about a person being late to something, that’s tolerable. ;)

Tuesday, August 12: Warned the lady I sit for that I was feeling severely fatigued and achey and I didn’t know if I’d have to go home early or miss work that week. Started pre-medicating with Ibuprofen 600 as of Monday or Tuesday. One per day.

Wednesday, August 13: The lady and her husband were late to work because of me – well because of a misunderstanding. I told them I’d call IF I couldn’t make it in to work. I didn’t call, so I went to work. Still very fatigued and feeling crampy but less so than the previous day, so I went. Turns out they were just covering their asses and wanted to be sure I’d show up, so they waited on me. They didn’t appear upset with me.

Thursday, August 14: Got my energy back – took the baby on two walks that day. I started spotting around 10pm and was sure george would arrive full on by morning.

Friday, August 15: George is officially due but doesn’t arrive. But all day I was tired and had mild to moderate cramps again. I was still taking Ibuprofen but took 2 over the course of the day on Friday. I had very light spotting on and off.

Saturday, August 16: Woke up at 6am with severe low back pain. Decided to ride it out instead of getting up and eating some food just so I could ingest Ibuprofen (taking Ibu on an empty stomach causes me severe stomach pain – causes most humans stomach pain). Got up because of the pain every hour after that until 9am, when I got up for good, ate some breakfast, and took an Ibu600. More spotting and light cramping on and off. Pain ramped up a bit Saturday night, especially in the low and mid-back region. By about 9pm I took a Tylenol 3 rather than deal with the pain.

Sunday, August 17: Up again from back pain and this time uterine pain too, every hour from about 7am to 10am. Full on bleeding and cramps started by 10:30am.

So my question is, did george arrive one day early, on Thursday, or did he arrive two days late, on Sunday?

In either case, I’m happy to report that I still have a full week clearance around the wedding. If I continue to be good to my body, george will not be early in September or October, either.

I know a lot of women must fret a bit over the whole getting their period on their wedding day thing. But the general populous of women don’t outright panic over getting their period on their wedding day, because most women can just take birth control pills or the morning after pill to stave off the menstrual cycle, or they can just not even care if they get their period because it’s such a non-issue for them.

But for women with endometriosis, I’d wager a lot of us look at our looming wedding day in abject fear that it could be ruined, all because of the pain and heavy bleeding we go through.

It is because of my illness, and also because of my father and my brother, that I spend about half of the time not looking forward to my wedding day, and just want it to be over with.

The other half of the time, I promise, I really am having a blast with my man planning for our wedding. We’ve gone on several wine tasting excursions because we want to serve locally produced wine. We’re about to burst with anticipation because next weekend is a big sale on last year’s surplus Halloween stock at a local boutique, and the weekend after that are the Scottish Highland Games, where my man hopes to get the rest of his wedding ensemble put together.
We have worked together on creating our own wedding invites and reply cards. My chosen sister gave us a sinister idea for favours that we ran with like children squealing in the park. We tasted cake until we were bored with the ordeal, because nothing was appealing enough to us as the expensive cake we wanted. So we finally gave in to that. Funny thing is, the expensive cake wasn’t expensive for being a wedding cake (the dreaded ‘wedding tax’ just because it’s for a wedding) – it’s not a wedding cake at all!
It’s just that the design and shape of the cakes this particular baker does is so much work that she has to charge accordingly.
We can’t wait to show people what we chose for our wedding cake!!!!

Back to the reality I am in at the moment – bedridden from the Endometriosis pain and hopped up on Tylenol 3…
Because the pain and bleeding did not start on time last Friday, this has messed with my weekend and at the same time denied me the upcoming work week.
Had the bleeding and pain started on Friday like it was supposed to have, then I’d have been bedridden Friday, Saturday, maybe Sunday, and feeling better by Monday, then returning to work as scheduled on Tuesday.

But no.

Now, with the pain starting today, I am bedridden Sunday, Monday, likely Tuesday, and feeling better by Wednesday but not sure if I can return to work Wednesday or Thursday.

When I only work Tuesday – Thursday right now, this means I lose pay this week. This in turn gets me pissed off at the company that fired me all over again, because although a settlement was reached, they still have not PAID it out. I am still waiting for these goddamned people. They still hold the upper hand and have the last word as it were. They are still harassing me in this regard. They are still abusing and taunting me.

And I want them to combust for it.

I hope they get caught up in a hostile takeover and then parted out.

I’d be worried about my employment were I not mostly self employed.

The daycare agency I work for seems to only call me in to work when I’m already on my way to the nanny job or when I’m sick from the Endometriosis a few days each month.

The agency just called me and asked how I’m doing. I said, “actually, I’m not well today.”

The woman on the phone exclaimed “I knew it! Every time I need you you are not available!”

Were this my only job, I’d be in that headspace – I’d have The Fear of being fired again because of my illness.

Prior to getting work on my own as a nanny, this agency was only calling me once per month when a substitute teacher was needed, ever since the daycare from hell discharged me for whistle blowing. Maybe it was intentional that the agency no longer had work for me. Maybe substitute work really is hard to come by in all the Bay Area daycares. I dunno. In any case, if you’re going to call me to work only once per month, chances are you might run into the Downtime – you might reach me when I’m bedridden from the Endometriosis.

Let me state for the record that I have near 100% accuracy in predicting when I will be bedridden each month, because the illness is tied to my menstrual cycle, which has a history of appearing on time every 26 days. So again, if the agency only calls me in once a month, they might run into the Downtime. If they do this often enough, they have me refusing work more than three months a year, and they then consider me high risk – unreliable – not worthy of retaining as an employee.

And that would place me back in the same emotional position I was in with the dotcom that fired me for missing 1-3 days of work each month. I’d be afraid constantly of ‘will this be the month they fire me?’

But the agency is no longer my only job. So emotionally, I finally have the upper hand.

I have also covered my ass by sending the agency documentation of my illness and a schedule of when I am ill through September. After the woman at the agency had her hissy fit, I asked her if she lost the schedule and if she needs me to resend it. She told me no, she has it in her email and even printed it out, but then lost it and decided to call me up when a sub was needed today, as it was the quicker thing to do rather than dig through her email again. *rolls eyes*

Also in that email I had sent the agency, as of mid-September, I have asked the agency to deactivate me as a substitute teacher, as I will have full time nanny work. The agency is only there as a very loose safety net (not that they have been reliable for me as stated above, but any work is good work should I need it and not be too ill to work should something happen to the nanny position).

So again, I have the upper hand.

But when I hear, “I knew it! Every time I need you you are not available!”, it does tend to dredge up some of the PTSD I suffered from the dotcom, which harrassed me on a weekly basis for eight months before going through with their threats of firing me for ‘violating’ their attendance policy.

While I am happy that I was able to complete my work week before getting sick, I am sad that I now lose my weekend to the illness.

Have extra fun this weekend for me! I will be back strong again in about five days to come out and play.

Well the bleeding just started.

I am going to refrain from saying “thank you george for allowing me to make it through the work week before attacking me” and instead say:

I thank myself for treating my body right this week in preparing for menses to begin on time.

This is a first for me in terms of the way I view my body and its functions.

I’ve always viewed my menses as something external and terrible happening to me, not something that is a natural part of me because I was born female. Before menses, it was my pubic hair and my breasts that freaked me out and were bad things happening TO me. I have viewed the very things that make me female with such abhorrence since I hit puberty at age ten.

I remember liking pink and red as a child. I had several red and pink friendship pins. I remember picking out my favourite white dress with red hearts to wear for my fifth birthday party, and my favourite peach coloured dress to wear for sixth grade school photos. My favourite pen in middle school was a thin pink Jordache pen. And yet I was also a total tomboy from age five or six. I had more female friends than male friends but I’ve always identified more with males. I loved climbing trees and climbing on top of the garage at the first house I ever lived in. I loved throwing a racquetball my dad gave me onto the roof of that house and running to catch it in the baseball mitt the teenaged boy next door neighbor gave to me. I loved playing stick hockey with my brother and his friends in the creeks that froze over in the woods in the wintertime.
I loved playing with matchbox cars in the dirt and mud. I loved playing in the muddy rainwater that flooded our street each summer.

But when puberty hit at age ten, all I remember thinking was that the boys I was friends with at school would hate me now. I knew how they talked shit about the other girls. I considered myself one of the boys, and now I’d be betraying them. I sobbed and begged my mother to make the puberty stop happening. She had no idea how to react. I sat on the stairs to her bedroom and just sobbed.
Within days it was confirmed. My best friend Jack disowned me and began making fun of me, just like he and the other boys did to any girl who grew boobs or filled out in any way. At age ten, the opposite sex has cooties. That’s just how it goes.

That was pretty emotionally scarring for me, and so I’ve never forgiven my body for what it did to me.

So this now is a huge step for me – that I would correct my thinking mid-stream tonight when I saw the blood. With this change in verbiage, I have finally acknowledged that there is no asshole attacking me as an innocent. This is not some outside force happening to me. I’ve realised that my body is sick and has been for a very long time, and if there’s any asshole abounding, it’s my own Self – ME – if I don’t do everything in my power to avoid getting sicker.

SO, I thank my own Self for not drinking alcohol this week, for not eating cheetos or anything with MSG, corn syrup, caffeine and partially hydrogenated crap.

Although I did splurge on sugar a bit this week (On Sunday or Monday I baked a gluten free, yeast free cake and frosted it with non-hydrogenated, corn syrup free frosting), and although I also splurged on breads this week (gluten free, yeast free pizza crust, mmmm SO good), I am happy to report that I did not cause harm to my body intentionally like I normally do when PMSing.

It took a lot of courage this week to stand tall in the face of my PMS demands. I wanted chocolate. I wanted caffeine. More than caffeine itself, I wanted coffee. I wanted ice cream and milk shakes. I wanted Cheetos and that horrifying Fritos brand Jalapeño cheese dip (which I call nuclear cheese dip because of the neon colour of the cheese). These are all on my personal No Fly List, because over time, I have observed that the above have directly caused the pain to get worse right after ingestion while menstruating.
I also wanted red meat. I wanted hotdogs. I wanted ham and cheese sandwiches.

I held my courage and said no to this every time I was in the grocery store or near a place where the above could be obtained. I was good. I was strict. I am proud of myself.

I did all this so that my menstrual flow would begin on time, because I do not want to allow for the possibility of menses arriving early anytime before my wedding. I only have one good week leeway. If I am early next month, my wedding day the following month could be doomed. I can’t let that happen. I refuse to be bedridden for my own wedding. I refuse to be in pain on my wedding day. I refuse to be on painkillers on my wedding day.

I must take care of myself. I am taking care of myself.

This is how it starts off – where previously I could do a three mile walk at a medium pace no problem, for the past two days I’m suddenly so tired I want to cry, and my walking pace has sunk to nearly a shuffle. My body is preparing for what I call Downtime. My limbs are super heavy. I get out of breath just getting up off the couch. Is it the water retention?

I’m severely distracted. I look at my chores list and have to read it five times to comprehend anything. Same thing with grocery lists.

Oh, and I’m cold. All this week I’ve been alternating between freezing cold and overheating. It could be 80°F outside and I’ll be shivering and asking for a sweatshirt and slippers. Earlier this week, it took three blankets and a heating pad to warm me up when I went to bed – and I didn’t get warm enough until all this had been applied to me for over an hour.

That’s of course when I’m not having a hot flash. YES I do get a mild case of what menopausal women do. This has been happening since I was a teenager. My hormones are whacked during girl do0m and so I’ll go from freezing to boiling and back again. Doesn’t make for a pleasant mood, let me tell you.

Yesterday I didn’t want to accomplish any of the chores I’d set for myself because as I said, I was so tired I wanted to cry. I’ve had enough sleep. My body is just demanding more sleep at this time.
Thankfully?!? I got some of my energy back after a call from my father’s wife (‘Ol Johnny Rotten sez Anger Is An Energy ya know), and so B and I went grocery shopping.

The grocery shopping is because it is imperative that I get easy-to-make foods for Downtime. When I’m in Downtime, I’m bedridden, I’m listless, I’m an emotional wreck, and I’ve no way to think about what meals I’m going to be consuming that day. It has to be such that I open the refrigerator, I see readily-prepared foods, and I grab something, shuffle to the microwave, and press the button. I cannot function further than that during Downtime, whether I’m drugged or not.

One time, I tried to make tea in the teapot.

I remember the smoke alarm going off – all the water had boiled out of the pot – did I even hear the whistle or was the heat not turned up high enough? – and the bottom of the pot had begun to disintegrate, releasing smoke.

So uh.. it’s just me and the nuker. It’s safer that way. No cooking on the stove or using the oven when in Downtime. Even the toaster oven is highly dangerous for me.

Now, regarding pain and medication…

For the past three days, I’ve been premedicating with Ibuprofen 600 (Motrin). On and off I have had low dull uterine pain, and when I came in to work yesterday, I wondered if I’d make it through the day without the pain and bleeding arriving. I made it through but when I got home, my legs were swollen. It’s that damned water retention around this time of the month. So I elevated my legs after a shower. Then as I said my father’s wife ruined my evening (my eyes still hurt). Because of that bitch, I needed 1.5mg Lorazepam to calm the hell down to be able to sleep last night.

This morning, I have slightly less fatigue (but still exhaustion overall), and now the uterine pain is back. I keep checking again to see if girl do0m has arrived. Once the do0m does arrive, I’ll be eating 1-2 Tylenol 3 pills every 3-4 hours, PLUS a Motrin every 8 hours. I will be using my rice bag heating pads.

Tomorrow is Friday. Tomorrow is the actual due date for the do0m. I will be missing out on a fun Tiki weekend, complete with zombies. Firstly cuz we can’t afford it and secondly because of the girl do0m. I’ll be down for the count from Friday to Tuesday at the latest.

After next Tuesday, I’m golden again and will be wanting to go to Gaslight Emporium on the 23rd and possibly the 24th, and to the Scottish Highland Games on the 30th. There may be some Death Guilding in there somewhere, too.

I WILL have my life back. But right now I am Persephone and I need to make a trip to the underworld. I’m down there nearly a quarter of the year all told.