Came home ill

Well I went to work this morning. I was sore but had no cramps.

I had slept all balled up and stressed out, my shoulders trying to touch each other, so I was pretty sore. It was a combination of feeling really cold last night and being sore in general because of menses forcing my body to take the pill-bug stance. I spent the morning before and during work doing slow, methodical stretches to stop my body from folding up on itself.

I got through set-up of a preschool assembly today, endured the assembly with a turkey hat on and parents snapping pictures (the kids did great!), managed tear-down after assembly, and was pulled from my class to substitute in the 4 year old class.
I was fine, then I wasn’t fine. I was outside with the kids for morning recess, walking on the playground when suddenly I was seized with sharp, stabbing pain in the lower right pelvic region. I gasped, doubled over, clenched my teeth, remembered to breathe…and then it was gone. I straightened up and carried on walking. I didn’t turn to see if the teacher saw me or not, because I didn’t want to draw attention and I didn’t want to be dismissed if it was only just a quick pain.

While we were outside, the fire alarm went off. I knew we’d be having a fire drill today, but they never tell us when exactly it will be, of course. I herded the children off the playground and the head teacher directed the children to follow me, since I was closer to the exit gate. I called to the children and they scrambled to me. I reminded them to form a line and move against the wall as they filed out into the back driveway. I saw the other preschool classes forming up in line behind my kids, and I opened the gate and led everyone out safely.

After the fire drill, when everyone was back in their classes and had calmed down and resumed work period, I began to feel the pelvic pain ramping up. No more quick sharp bursts – it was a constant level of pain rising up. It started at 3 on the pain scale, then jumped to 5. I let the head teacher know, and then I went and took 2 Ibuprofen gelcaps. I got back to class, and convinced myself I’d be fine, that gelcaps kick in quickly.
Within ten minutes of taking the gelcaps, I was at 7 on the pain scale, rapidly becoming disoriented. The teacher checked in with me and I told her I was poorly. She told me to go now and find another substitute for her, since the class was still in work period and manageable. She told me she didn’t want the pain to ramp up further and me having to leave right when she needed someone to help the kids wash hands and get ready to go outside for lunch. She was totally right. I thanked her and left her room. I stopped by the bathroom on the way to the office. I looked ashen-faced and felt like I would vomit at any second.

I let the secretary know, and added that we’re down a person in the 4 year old room as well as down TWO people for lunch duty. The secretary sent me to the director. I began to explain all of this but she wanted to ask me a bunch of questions about how I cope with the pain. She used to be upset with me for not telling her at interview time that I had a chronic illness, but in the past couple of months, she shared with me that she used to have really bad pain, and now her daughter does. I really appreciate her curiosity and want to give her all the info I have for the sake of her daughter, but I had to gently steer her back to the current pressing need – a substitute to replace me in a teacher’s class, as well as the need for two people at lunch time.
We got that all hammered out while I went to collect my belongings to go home. I had to keep stopping and asking what I was supposed to be doing, because I had lost most of my capacity for concentration. The director would nod knowingly and remind me – “we are going to your locker… we are going to get your coat…do you have your keys?”
I kept breathing through pursed lips. The director said, “my daughter does that, too!”
The poor girl. :( I remember how hellish it was to get through high school and my first years battling this illness, trying to understand its behaviour, wondering what if anything I did to deserve such pain… my heart goes out to young women struggling with endometriosis. I want to talk to every single gal to let them know what’s going on.
Funny that – the director said she’d really like it if her daughter could talk to me sometime. I told her yes, definitely.

Once I had everything, the director stayed in the teacher’s room, and I went back to the office and signed out. I was no longer ashen-faced; I felt flushed and my cheeks burned. Another hormonal surge – the pain would be ramping again soon, I knew all too well. And now I was feeling really light-headed, like I might pass out. Ugh.

The secretary asked how I got to work this morning – I told her I drove. She gave me a long look and said, “do you need someone to walk you to your car?” I giggled and assured her I would not be wandering in the street, this time. She didn’t stop looking at me, so I said, “you don’t believe me, do you…”
She told me to call her when I got home.

I live only a mile from work, but it took what seemed like forever to just walk the block from work back to my car. I started off with a quick shuffle, but once outside the school, the pain ramped up a notch and so I slowed the hell down. I walked like a granny and had to keep trying to stand up straight as I walked, but it hurt. Once back at my car, I realised that in all of this trying to exit work business, I’d forgotten to take the Tylenol 3, so I took half of one as soon as I got into my car (I fired the Vicoprofen after two rounds of trying it out in October. It makes me severely depressed and agitated).
I’m pretty sure I drove under 25 M.P.H. all the way home, because I was so fuzzy-headed from the pain. But I did remember to call the secretary to let her know I made it home.

TMI notes to self for posterity: I was still barely spotting this morning, but it fluctuated all night between pink healthy blood and dark brown sticky goo, getting more icky as the morning went on, finally turning to dark red flow around 9:30am.

Also: it has taken two hours to write this journal entry, because of pain and pain meds and nodding off.

It’s that time again

I stopped bicycling to work yesterday. I had a good run of 10 consecutive work days in which I biked to and from work (even when dealing with pelvic pain)! I think this is a record.

I’ve been having cervical and general pelvic pain since November 8th – the last time my husband and I were intimate. As I’d mentioned before, being intimate often sets off the endometriosis pain. Having pain since the 8th means that I’ve had pain for 11 straight days leading up to george, who is 2 days early.

The fatigue, muscle and joint pain started on Monday – I’d ridden the same route I’ve been riding – one mile each way – but I was really winded on the way to work. I chalked it up to the Bay Area having a moderate air day (particulate matter was up). The muscle and joint pain set in once I got home – it felt like I’d spent the last three days working out in the gym.

Tuesday morning, the weak legs and nausea began. I want to say I’ve been experiencing mild nausea on and off since the 12th, but I didn’t document anything past the 12th insofar as nausea. Anyway, Tuesday morning I had nausea and my legs were super weak, so I drove to work instead of bicycling. I got to work and the rest of my body felt weak and tired. I was taking down the fasteners from the top of a partition wall, which seals off my outdoor classroom when not in use, and I injured myself because I was so weak. It’s hard to explain – the partition wall has fabric panels on it which were painted with some weather-proofing paint, and now the fabric is hard and sharp – jagged in some areas. My hand came down from the top of the wall and sort of slid down the wall because I was feeling weak.

The hand sliding down the wall of course scraped against the wall, and I managed to split open four of my five fingers on my right hand. It felt like a razor – the bleeding began immediately. I had to wear band-aids on my fingers all day and all last night.

I made it through a full day of work yesterday, and even stayed an hour late to do some homework, even though I was exhausted.

This morning I had a hard time waking up. My body still felt seriously exhausted, but I forced myself out of bed and drove to work. The shooting pains started around 11am today. I popped 400mg Ibuprofen gel caps and resumed work.
The spotting started around 2pm, just as I was preparing to open the afternoon class.
I forced myself to stay two hours late after work, to get some more homework done, and to make sure the classroom was fully prepped and clean for tomorrow. I even left notes to my co-teacher about class and curriculum-related things I’m supposed to talk to her about tomorrow, in the event I cannot make it in.

I got home at 6pm and just could not do any more homework. I thought I’d pass out if I didn’t eat, so I forced myself to make dinner. I really wanted to just order food, but I don’t have the money to do so. My husband just took me grocery shopping last night, and would frown on me asking him for money to order restaurant food.

I made dinner – instead of mac ‘n cheese, I steamed some southern greens, then fried ’em with some baked chicken in some olive oil, and added 1/3 cup of goat’s milk yoghurt which was mixed with fresh pressed garlic. It was a tasty and healthy dinner!

The pain so far has been stabbing but thankfully intermittent. I have not taken any pain medication since 11am.

I need to go to bed – it’s already 10:30pm. Who knows if I’ll be able to go in to work or not tomorrow, but I need to get in bed AS THOUGH I’m going in. I always operate that way. If you ask me if I’m taking the next day off because of the pain, I’ll usually say I don’t know, that it’s hard to know hour by hour, sometimes minute by minute with the pain.

Motivational dream

This morning before waking, I had a dream that I was back in time, working at the daycare in Michigan. I had been off work bedridden with endometriosis when a friend stopped by to chat.

I realised that this friend had also been grade school buddies with another friend of mine, whom I happened to work with, and who was filling in for me at work that day, so I convinced my visiting friend to drive me to the daycare so she could see where I worked.

We got there and found the teacher assisting some children. I walked slowly and with difficulty up to the teacher to introduce her to my other friend. As soon as she turned and saw my friend, they both lit up and hugged and it was a reunion of grade school buddies again. The teacher filling in for me was my friend Rain. I don’t know who the other woman was.

While the two old friends chatted, I went to the back of the class and sat down uncomfortably due to the endometriosis pain, holding onto my pelvis the entire time. I was on medication and a bit fuzzy. Children and co-workers alike began asking what I was doing there. The director and/or assistant director saw me and made offhand commentary about how I didn’t look sick, and wondered aloud why I came in at all, after I had earlier called in sick. They were not discreet at all in their accusatory tones that I was faking my illness.

This of course pissed me off, and I found myself trying to explain to co-workers what endometriosis is and how it affects each woman differently. I tried to defend myself by my glassy eyes and told them I was on too many pain meds to be able to work, but I really wanted to reunite two friends that day.

Talk about bad timing – I could have waited to do this and not jeopardized my employment.

I think at one point the children were at recess and I finally had to tell my friend to take me back home, because I could no longer handle all the accusing glares I was getting. I shuffled out of the workplace, still holding my pelvic region, the pain having subsided, but still on pain medication. I felt completely like a liar and a fake, despite how very real my situation is, because I had no VISIBLE way to defend myself other than this shambling and holding that I was doing.

I got back home and sat down on my couch, clearing some of the clutter from my coffee table, and said aloud what I had been thinking the whole time I was at work that day – “I need to create some sort of picture book to show people exactly what a woman with endometriosis goes through.”

And then I woke up, and I was in pain – low back pain and minor pelvic pain – a combination from sitting on the couch for long hours doing homework yesterday, and having been intimate that night.

I don’t have enough shit on my plate right now, so why not add a picture book to the queue?

Here is my call out to anyone with endometriosis reading this blog entry – CREATE YOUR OWN PICTURE BOOK and add it to my eventual voice. The more books and the more personal stories out there – published and in book stores – tangible rather than web logs – the better.

Go!

Endometriosis and intimacy

Today is Day 8 or 9 in the new cycle, which means I am likely ovulating. It explains why I was receptive to intimacy last night, for sure. That’s one very sad fact about women with endometriosis – interest in intimacy becomes dull or nil over time because of how much pain we’re always in. So I take advantage when the moment strikes.

I had 12 pain-free days in October, and miraculously 5 of them were consecutive. However, that was mitigated by the fact that I was sick throughout October, leaving me with a total of 4 days total in the month of October where I felt healthy and fit, and sure that I would not pass any sort of virus to my husband, since I work in a school, where children are natural germ factories.

So in dealing with being sick all month, I had zero interest in being intimate. I forced myself to be in the mood on the eve of our one year wedding anniversary. No penetration actually took place, either, but at least I made my husband happy. So unless I forgot to record it on my calendar, we were only intimate ONCE in all of October, our anniversary month.

Both of us were emotionally crushed when george showed up ON our anniversary, but I think actually my husband was mad and disappointed. In a depressed voice with shoulders and head bent forward, he asked quietly if he could get a rain check as soon as I was feeling better. GUYS, I AM HERE TO TELL YOU THAT ASKING SUCH A THING IS THE ABSOLUTE WORST POSSIBLE THING YOU CAN SAY TO A WOMAN WHO IS ALREADY SUFFERING EMOTIONALLY AND PHYSICALLY. DON’T EVER DO THAT AGAIN.

And so I was the one who was crushed – traumatised even – that I allowed all the stress and chocolate-eating to catch up with me on such an important day to us, because I felt for sure that my husband would stray, ESPECIALLY in light of his fecking “rain check” comment.
Even though we’ve been together for eight years, it was the first thought in my head; “Now that we’re married, it’s different, we didn’t want for it to be different but there are in fact different expectations, now, and he won’t be able to handle me in this new role of culturally-defined expectations.”

An acquaintance, who was having marital troubles from the start, once told me that once we got married, “Everything changes. It will be different, you’ll see.” And she was not saying this with a smiling congratulatory face. She kept saying, “I’m serious. It all changes.”

Well now I see one way in which she was right.

I was suicidally depressed for the week following menses, and part of it had to do with having taken a lot of vicoprofen. Part of it had to do with being overwhelmed by all the homework I’ve had for one class for work, part of it had to do with the amount of light in the day being drastically reduced throughout the month of October (stupid earth rotation), and part of it had to do with my husband CONTINUING TO ASK ABOUT THAT RAIN CHECK every couple of days.

The “rain check” was cashed in last night – a full week after menses stopped, because of the major depression and the homework and full time work schedule…and well because my body was ready for intimacy again.

So far, six days into November, we’ve been intimate once. I have to try to find ways to kick up the intimacy again, and remember to record it more diligently for posterity. It looks like March was a record month, as we were intimate five times.

I need an aphrodisiac I can take like a supplement. Too bad anything on the market right now billed as aphrodisiac is actually a scam.

The most sexually charged I’d ever been on a continual basis was when I was taking anti-depressants.

However, I also went even more insane while on anti-depressants back in 2000.

Zoloft made me clinically schizophrenic inside of 11 days, so I was put on Paxil, which dulled all emotions except the desire to hump anything that moved.

The problem with Paxil is that it also gave me akathisia, which in turn led to further suicidal ideation – the very thing I went on anti-depressants to stop.
While on Paxil, the emotional part to the suicidal ideation was removed. That means I was now TOTALLY FINE with going ahead with various ways of killing myself, because I no longer felt conflicted over it!

I had enough wits about me to realise this, and got off Paxil and onto Celexa.
But Celexa didn’t do much for me and I got off of that, too, finally firing anti-depressants for good a year or so later.

The gym remains the only viable solution that I can think of for the intimacy thing, except that I’m only pain-free enough to get into the gym a few precious days a month. But it’s worth a try, isn’t it?

Everything’s worth a try, to convince myself and others that I’ve at least tried, before the full weight of insanity bears down on me and I wink out.

November 9, 2009 Edit:
My husband and I had a record weekend of intimacy – Friday, Saturday and Sunday! Things got off to a rough start on Saturday when he once again asked to cash in that “rain check”, and I had to put him in his place, reminding him we’d already been intimate on Friday, so THAT was his damned rain check. He now knows never to use those words again, and why. I dressed up for him anyway, though – that is the part of the “rain check” he’d wanted – all because he’d seen some nice shoes I’d brought with me back on our anniversary weekend, and got some fanciful ideas in his head as to what I would be wearing to bed. When in reality, I just threw a bunch of clothes and nighties together along with the shoes, to go with whatever mood would strike me.

Anyway…

Yesterday after our intimacy, the cervical and pelvic pain began. It’s still with me today. I have moderate low back pain as well. I feel like I’m getting another infection. I hate this. THIS is a big reason why I avoid sex – if I’m going to constantly get infections, why bother being intimate? It’s not the condoms – they’re latex-free now, and I even get this same pain if I pleasure myself.

Time to Wait And See if the pain goes away or gets worse.