This morning I got up, ate two bowls of cereal, leaned over to pet my cat, and the nausea and weakness set in. The pain and bleeding, which had stopped overnight, also resumed.

I hemmed and hawed for a few minutes, then called in sick to work again. My body wanted to puke and the pain was only a 6 on the pain scale.

At 8am, I took a whole Tylenol 3 pill. Within 18 minutes, the drugs kicked in. Sweet!

I have determined that I’m alright, as long as I *don’t move*. I can stand, or I can lay down with heating pads. Sitting or otherwise moving around is right out.

The part that sucks the most is that my mind is feeling better, but my body is not. My mind is awake, alert and ready to tackle housework. But then I take one step and my pelvis cries out in agony.
The Tylenol 3 is not just good for pain dissociation, it’s also good for knocking me flat, so that I’m forced to rest.

Like, right now. I’m super light-headed and need to go lay down.

9:40am Edit:
Just woke with the most mother effing cramps ever. Too nauseous to eat. Take more Tylenol 3? Take Advil? Call an ambulance?

9:50am Edit:
Heating Amy’s freezer brand gluten free mac ‘n cheese. Will take 4 advil gel caps. Already have 2 heating pads on me. breathing.

10:20am Edit:
Got the mac ‘n cheese down. Got the Advil down. Also took another Tylenol 3. Breathing. Waiting. Pacing. Acupressure points.

11am Edit:
I am effectively dissociated from the pain once more. Trying for sleep again.

1:30pm Edit:
Slept for an hour and 40 minutes (until 12:40pm), pretty good.
Problem is, I wasn’t breathing. Had Tylenol 3 induced nightmares. Woke up choking for air. It’s now nearly an hour after I woke up, and I am still drawing deep breaths and hoping for the full return of my faculties, and I have a headache.

I had crazy dreams/nightmares about my ma’s side of the family, like I *always* do when on a lot of Tylenol 3. We had some sort of reunion in someone’s house, which had an upstairs and a basement. There were small dogs, I think. The family was glad to see me but didn’t know how to act around me - as usual I was the weird one. The family acted as though I was cursed, or worse, an imposter of the blood line. But they tried to be nice to me about it. Then it faded to ignoring me. I tried to get photos but no one would stand still. The photos I did get looked creepy, so I declared the house to be haunted. At the end of the dream, I asked the family to all post skeletons as their user pix on Facebook.

The dream is just my fear of rejection surfacing, again. In the past year, I have reconnected with 23 family members on my ma’s side, mostly cousins. I am supposed to have a family reunion with them sometime this year.

I called in sick today because I am still bleeding like a stuck pig, and I knew the pain would return.

As seen on Yahoo chat:

My Husband: 10:25 AM how’re you? *smooooch*
Me: 10:26 AM tired if you can believe it
Me: 10:26 AM pain is about a 2 on the scale
Me: 10:26 AM will be taking meds after i eat

Ten minutes later…

Me: 10:36 AM zenaide forgave me*
Me: 10:36 AM she’s wriggled into my lap
Me: 10:36 AM of course, just as the cramps are ratcheting up
Me: 10:36 AM *carries cat to bathroom to pop pills*

(*I had pushed my cat away from me around 10:20am, as she had tried to crawl onto the keyboard of the laptop. She was furious with me, glared at me and went to the living room and overturned something from a bookshelf, which left a gouge in the pergo flooring).

Seventeen minutes later…

Me: 10:53 AM pain ramped up
Me: 10:53 AM what was i, a 2?
My Husband: 10:53 AM aye
Me: 10:53 AM now i’m a 7.5
Me: 10:53 AM i took an entire tylenol 3 right after eating

I went on about how I should have just taken the meds as soon as I woke up. My husband just last night was telling me not to leave any gaps in the medicating, because pain has leaked through, before. I felt like I left a huge gap this morning, and was beating myself up over it.
My husband said, “but you had to eat in order to take the meds….so it’s not like you were stalling.”
He’s right, of course. I’d gone all night without meds and woke up with an empty stomach - I had to eat. I should have eaten earlier than I did. I woke up around 9am but didn’t eat til after 10am.

This morning I have tried pressure points but my legs are bruised from putting pressure on the points all weekend already. I also tried doing the large hip circle belly dance move, but it hurt like hell, as though I pulled muscles while exercising. I did a lot of hip circles and stretching Saturday night, perhaps I pulled something, or perhaps I’m just so inflamed right now in that region from the endometriosis pain, that any stretching or hip circles are going to naturally make the pain that much worse.
I tried pacing the house. That never works. I tried my breathing exercises; sometimes I swear the more I breathe, the worse the pain spreads.

Now all I can do is wait for the Tylenol 3 to kick in, and take more if necessary.

No alternative medication for me, today. No hippie dippy drug trips. Give me pain killers and lots of ‘em.

My gods, the anal pain just started up again.

WHY.

I got about 7 hours of sleep before having to wake for the day because the pain forced me out of bed.

I stood groggily in the bathroom, staring in the mirror, trying to figure out if I should take Tylenol 3 with Advil, or eat some more medicated butter with Advil. The pain rose to a 7 on the pain scale.

I remembered eating just a few slivers of the medicated butter on a gluten-free waffle last night. The effects took 20 minutes or longer to kick in, and then I was pain-free for about an hour to an hour and a half. Then the pain returned, but was not an alarming pain. I went to bed with heating pads. Within half an hour, I was awake again and severely stoned. What?!? How did that happen? I was dizzy and slightly nauseous due to being so stoned. Was it the fact that I’d been on half a Tylenol 3 before eating the medicated butter - did it prolong the high? It just seemed like a new wave of stoned was washing over me - after I had gone to bed. Kinda scary.
When my husband crawled into bed around 3am, I woke suddenly and was dizzy and discombobulated. I cried out. I had no idea what was happening. I was on the verge of hallucinating.
My sleep remained broken and full of strange dreams all night.

This is why I stood in the bathroom this morning, contemplating which drug to medicate with. I know the Tylenol 3 like the back of my hand. The medicated butter is new and scary for me, especially since the dosing is completely up to me to figure out, and is not so cut and dry as pill splitting.

TMI FOLLOWS:

When the pain got to a 7 this morning, I also got the urge to defecate. Usually this is bad news - whenever there is pressure on the bowels or the bladder, the endometriosis pain becomes excruciating. While having a movement, I sometimes yell or cry out in pain, and sometimes I get quite nauseated from the pain, but once I’ve had the movement, the pain subsides, leaving me exhausted physically and emotionally. It does not matter if I have a soft stool, or diarrhea - if the bowels are agitated, it can get real bad for me, pain-wise. Of course, if I’m constipated, forget it, I’ll be on the verge of passing out from the pain.
Thankfully this morning the pain did not reach nauseating levels, and I was not constipated. Thankfully the pain abated immediately after the movement, and I’ve been about a 3 on the pain scale for the past hour.

That means I have delayed taking any medication, but the question still faces me - Tylenol 3 or medicated butter?

Today is Sunday. It is only my second day of full on menses and pain. I estimate I’ll be missing work tomorrow, based on years of experience as to how long my cycle lasts and how many days of bleeding and pain go with it.
That means I should not feel guilty over whatever medication I choose to take today, and if it leaves me too groggy to go to work in the morning, it’s okay, because I am taking care of myself today and in the here and now while the pain is present.
I spent too many years pushing myself to go to work despite still being in a lot of pain, or being exceedingly groggy from the pain and the medication to treat it. When my body tells me it is ready to return, and that could be tomorrow, then I will return. If it is not ready to return, then I will take the day off. No more of dad’s words in my head, telling me to “crawl in to work if you have to“. No more bullshit in my head from the Celestine Prophesy/The Secret/What The Bleep? cultists out there who say that I’ve manifested my own illness by way of pessimistic thinking or as they call it “Law of Attraction” (I’ve ranted about this in the past).

I’m tired.

I’m tired because of my broken sleep last night. I’m tired of proving myself to the entire world that I really am doing the best I can to treat the illness as it exists in my own meatsack. I’m tired of going through the pain every month, and the side effects of various treatments and medications. I’m tired of losing sunny days to the pain (this is Day 2 of not being able to go out into the warm sunshine and bicycle or go for a walk or run around town with my husband in a care-free manner, enjoying the weekend).

I’m currently at a 3 on the pain scale, with intermittent ass-shooting pain, which takes me up to a 7 on the pain scale. Need more breakfast food. Will report back later.

On December 5, I developed a mild cough. Two days later, I had the flu. I found out later from a doctor that it was likely H1N1.

A week after getting the flu, I fell ill with endometriosis pain and was bedridden for a few days. I was on a lot of Tylenol 3, which was good not only for the cramps, but also for managing the fever (acetaminophen) and the cough from flu (codeine is great for supressing coughs).

The moment I came off the Tylenol 3, the cough and flu-symptoms returned. And then my husband fell ill with the flu. And then my symptoms turned into a sinus infection. This was the week of December 20. By the end of that same week, I was experiencing Mittelschmerz.

I have all the flu stuff detailed on another journal here and here.

My husband and I began to feel better by December 29, and on NYE we were able to go hang with friends.
On Friday and Saturday (Jan 1 and Jan 2), I went out dancing with my husband, because we were screwed out of our vacation and because it’s the last dancing I’ll likely get to do before falling ill with endometriosis pain again…it’s due by January 7…which is two days before my husband’s birthday.

So I missed work on account of flu, then on account of endo pain right before Christmas/Winter break, and now I’m going to return to work and immediately miss more work on account of endo pain.
Good times. The fear of not having job security continues.

I tend to forget about journaling when I’m NOT in pain… I noticed that the last time I journaled here was 16 days ago.

Well! I am happy to report that for 10 straight days, from November 23 to December 3, I ranged from pain-free to low intermittent pain! Yay!
I must note that I’ve done nothing drastically different with my diet. This of course gets a yay and a boo, because I keep holding onto the idea that my diet is what exacerbates a lot of my pain. I’ve been eating chocolate, cheese, refined sugar, caffeine … all “forbidden foods” … and no pain resulted.

I did have about half a cup of champagne - maybe less - on November 28, and two days later, I experienced intermittent shooting pains in the front uterus/bladder region. However, that was also day 7 of the new cycle, when I ovulate, and will often experience mittelschmerz. So even consuming booze can’t likely be directly linked to causing pelvic pain in that instance.

This leaves me feeling that there’s nothing causing this good health aside from the endometriosis WANTING to behave. I had not embarked on any new medical treatments until December 3rd.
I’m getting as much exercise as I normally do. There’s no new medications or supplements in my diet, but I have been a bit more regular with taking evening primrose oil and niacin.

While I am ecstatic for having a nice run of pain-free living, I am absolutely furious because I cannot say for fact that I MADE myself pain-free via diet/excercise/medication/supplements/etc etc. It seems that it’s only because the bastard disease wants to behave right now.

But throughout those 10 straight pain-free/low pain days, I smiled, breathed and enjoyed each minute of healthful living.

On December 3, I went to a new acupuncturist. According to my calendar, I’ve not been to an acupuncturist since June 12, 2008. I had given up on acupuncture for awhile, because I didn’t feel the Chinese herbs were helping, and the Chinese male acupuncturist didn’t make an effort to try to see me regularly. This new acupuncturist is female, anglo redhead, and wrestled with endometriosis for years. I was referred to her via a friend. So I think I’m off to a better start this time around.

After my acupuncture session, my husband and I went to our friend’s house for dinner, and they were getting into the wine and whiskey (not together mind you, some had wine, some had whiskey!) I took a small sip of a nice whiskey, and I drank two shot-sized glasses of port with our friends.

The next day, on December 4, I experienced right side ovarian pain, which was stabbing intermittently throughout the day.
Today, I experienced (and am still experiencing) ovarian pain on BOTH sides. The feeling is of stabbing intermittently, with continually low dull pain in the ovaries, including the lower front uterus. Low back pain is also noted, and all day I have had moderate pain radiating down the outer hips to my outer thighs. There is occasional stabbing pain in my hips/thighs when I bend forward or sit.

Is it because I drank a small amount of alcohol Thursday night? Or is it just that my period is due in one week?

I’d like to note for the record, according to my calendar, that in 2008, I did not consume ANY alcohol for 77 straight days. Five days later, I ended up in the emergency room because my cramps were so bad that even I was scared.

So I’d like to officially NIX any idea that consuming alcohol recently is what brought on my cramps, and make the motion that my cramps have set in simply because It Is Time - I’m one week out, and this for my body is normal to be getting cramps.

The cramps in question this time around have been hovering at 4 - 5 on the pain scale.

Still, I’d like to give up cow’s milk-based cheese and ice cream for a few months straight and see if that has any effect. It’s the only cow’s milk-based food I still consume directly.
Indirectly, whey is in a lot of foods, and so I know I still consume cow’s milk indirectly on a regular basis. I’ll go with omitting the direct ingestion (cheese, ice cream), first. I rarely eat cow’s milk-based ice cream anymore anyway, so that should be easy enough.

I have a lot of pessimism in this - I firmly believe that any lack of pain is simply due to the illness behaving itself, and therefore the blame game on my part emotionally just really needs to stop already. I was born with this illness for cryin out loud. It has a mind of its own. I don’t think anything I do will influence it without adding side effects and/or consequences to the rest of my system.

This doesn’t mean of course that I’ll go out and get smashed, gorge myself on ice cream, and eat 50 pizzas. I still have allergies out the wazoo to contend with, and a desire for overall healthfulness in general.

I am so thankful for the 10 straight pain-free days I was able to have this month. I hope that once I emerge on the other side of the coming cycle, that my body can meet, if not exceed that record.

Oh - one more thing - I cannot remember if I told you where I’m at on the medication front. I spoke to my gynecologist by phone last week, and she expressed disappointment that I wanted yet another Tylenol 3 refill. The vicoprofen just wasn’t working out for me - I was getting dangerously depressed on the stuff after just a couple of doses during my period. I go through about 10 Tylenol 3 a month, which exhausts my 30-day supply in 3 months. So I call my gyn every 3 months. She told me she thought I was going to see a pain managment specialist. I told her I’d not been able to find one to see me in the evenings or on weekends, because as a teacher, I NEED to be at my job at my scheduled time Monday through Friday. She didn’t care for my answer. So She’s given me a deadline - no more refills after this one. Come February/March, I’m on my own, she’s done prescribing for me. Yet another doctor who thinks I’m drug seeking. This is totally common for women suffering with endometriosis to be treated in this fasion by their doctors, and it’s pathetic.

I told my gyn I had an appointment with an acupuncturist, but she didn’t count that as “pain management”. Many doctors still consider acupuncture as folk remedy. Whatever. I’m giving it another shot. I’ll of course also be contacting her pain management and surgeon recommendations.

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.

I got my period twice this month, hence a ‘Blue Moon Menstrual Month’. The last time this happened was in April, 2009.
I wonder how often this happens for me…gonna go back and look at the calendar for a minute…

…According to my calendar, I got my period twice in a month for the following months:

June 2006
November 2006
December 2007
June 2008
November 2008
April 2009
October 2009

So it looks like my ‘Blue Moon Month’ occurs twice each year (2007 being the odd year because I had been on hormone therapy after pelvic laparoscopic surgery that year).

For the record, it does not coincide with the Blue Moon for the actual Moon. Those instances were July 2004, June 2007 and December 2009 so far; occurrence averages about every 2.7 years.

Now, since I’m looking at planets, this gets me interested in Astrology, so I looked it up - Jupiter, Uranus, Neptune and Pluto are all still out of whack in the sky. That is to say, all four were Retrograde, and two have since stopped going Retrograde (which means they are now considered Direct).

Jupiter went Direct on October 12, and Pluto went Direct on September 11, but Uranus and Neptune are still completely Retrograde.

Jupiter and Pluto are still playing catch-up and won’t be in their place of Return until December 2009.

Neptune won’t be in its place of Return until February, 2010, and Uranus won’t be in its place of Return until March, 2010.

Why the heck would I consider astrology?, you may ask.

Well! This leads to a much larger discussion, but the short of it is that in the 24 years that I have wrestled with endometriosis, I have tried so many things to try and figure out the why and wherefore of this damned pain, and that includes such strange things as astrology and belief in deities.

The longer answer begins with two statements:

1. Likely due to my fundamentalist upbringing, I have conditioned my thought process from an early age to leap to punishment to explain why I am in such pain all the time.
2. Also likely due to my fundamentalist upbringing, I harbour a lot of guilt over having this illness.

With #1, I have a constant unconscious dialogue that begins with asking myself, “What did I do to deserve this?” I answer my question with, “You must have brought it upon yourself, somehow.” I proceed therefore to lay blame to everything from my recent diet, habits, thoughts, illnesses, exposures to contaminants, vitamin intake or lack thereof… you name it. And that’s just on my end.
I also go the pity-party route and blame the environment I grew up in, the birth control pills my mother was taking just before conceiving me (and which she’d been on for something like 12 years straight), the fact that my mother smoked like a chimney throughout and after her pregnancy with me (and still smokes a lot to this day), and my mother’s genes (her mother and sisters all had/have classic symptoms of endometriosis, as do my female cousins).

With #2, I miss a lot of things in life because of this illness. I’ve missed a lot of work, concerts, birthday parties, being there for friends in the hospital, babysitting gigs, charity events, activist events, doctor appointments and more. This leaves me feeling like I’ve flaked on people and let people down. I feel this way because so many people still do not understand much about what it means to live with endometriosis. The clearest example I can give you just happened yesterday:

I awoke on my first year wedding anniversary YESTERDAY and without warning, gushed forth like the bathtub scene in Stephen King’s “Carrie”.
I had barely any symptoms leading up to this menstrual cycle, which was two days early. I had no spotting, no low back pain for days, no intense fatigue, no feeling of having to repeatedly ‘check my undies’ that I get up to 48 hours prior to menses. I had three days of minor right side ovarian cramping. That’s not unusual - sometimes I get that for a week straight, and not even right before my period. The low back pain came in the wee hours before waking yesterday, and I thought it was the bed I’d slept in (we were out of town).

On my fricking wedding anniversary, I bled like a stuck pig and was not prepared in the least for it. I had no pads, no wheelchair, no security blanky and pillow, no rice heating pads.

My plan was to wake, use the bathroom, then snuggle with the husband. Instead, I woke, used the bathroom, and sat crying with my head in my hands, on my first year wedding anniversary.

I began immediately with the blaming dialogue. My husband tried to talk me down, but I’d catch myself returning to the topic over and over again, muttering aloud that this or that could have brought on the pain and bleeding. Everything from all the chocolate we’ve been eating to the half hour we spent in the jacuzzi the night before.

I spent all day high as a kite on Vicoprofen yesterday. We were in Mendocino, hours away from home, and I had refused to be taken home right away. I took the drugs and we visited as many little shops as we could. We ate brunch. We explored one of the cemeteries. We walked out on the bluffs and stood watching the ocean together. We indulged in a chocolate orgy yesterday - we had cake from Mariposa Bakery that we’d brought with us, and I’d gifted my husband with handmade chocolates from Gaslight Emporium in our own hometown, and we bought even more chocolate from a place called Frankie’s, as well as buying truffles from a street vendor.

We left Mendocino when we said we would, and got in some of the last sunset pictures we could on the way out of town. We had decided at the outset of the trip to take Highway 1 home, to enjoy the scenery and the ocean view.

However, my pain ramped up considerably on the way home, and I took a whole Vicoprofen pill in the span of one hour to combat the pain. This was my first time taking that much Vicoprofen at once, cuz I’ve been consuming only half a pill at a time.

What resulted from being on a whole pill of Vicoprofen (7.5mg Vicodin and 200mg Ibuprofen) was very similar to the experience I had when I had taken a whole pill of oxycodone; “I thought I was drowning/suffocating to death. I literally didn’t think I’d make it through the night. That was 5mg though.”

In addition to that, we were on some very twisty/turny ocean-side roads. I had the spins real bad from the medication.

Ibuprofen is a bit of a diuretic, so I continually had to have my husband pull over so I could pee or so I could stand in one place and get some fresh air so as not to vomit. I kept a paper bag in the front seat with me just in case I had to throw up.

The drive, which is supposed to take about 3 hours, took TWICE that because of all the stops I needed, because of how slow I needed us to drive because of the dizziness and nausea, and because of road work (in some areas, there had been mudslides and the road was down to one lane!). What a harrowing experience it was to get home last night.

I cried, I moaned, I begged for my death, I hallucinated.

It didn’t help that due to the season being Autumn, there was a lot of wildlife on or near the roads after dark. I’ve never seen so many deer in my life. There were possums, raccoons, hares, and, I shit you not, there was also a large brown cow sitting on the cliffside next to the road at one point. Just sitting there calmly, chewing as we drove past. I flipped my shit and my husband had to reassure me it was not another hallucination.

I was convinced a deer would land through our windshield before the night was over.

I think the worst trip I ever had prior to this is probably the first time I ever ate a pot brownie. Back then I felt like I was continually going backwards on The Gemini roller coaster. What a horrible night that was.
So last night, on the full pill of Vicoprofen, I felt like I was on a continuous roller coaster from hell - picture a giant wooden roller coaster like The Gemini with steep hills that won’t let you off for six solid hours. That’s what it felt like. Every muscle in my body was tensed to the max, which made the pain worse. I tried and tried to relax. I tried to start with just my eyebrows and I could not do it. That’s when the crying started, really.

We got home around 1:30am, according to my husband. I washed my face, put on my pajamas, and put a few things away that we’d brought in from the car, and prepared for bed. Despite all that I’d gone through, I was lucid enough at that point to be sensitive to my husband’s needs. He was all jacked up from the stress of the ride, too. He was the one having to steer us through all those roads and having to endure my crying and whining (to the point where he just blasted the radio for a long time to drown me out, but I didn’t care that he did that cuz seriously, I was a mess and it was making him a mess).
I warmed up all available heating pads in the house, gave my husband a massage as he sat in front of me on the bed, and then ordered him to take half a Vicoprofen and lay face down on the bed.
Then I put the heating pads all over his back and just let him lay there while I settled into bed.

My husband said that when he woke this morning, he had no trace of back pain, thanks to the care I’d given him. :)

As for me, you know I stayed home from work today. I’ll be staying home from work tomorrow, too. I’ve already called in sick. There’s no way I’m playing the “wait and see” route this time. I need the extra day and I have no false hopes that I “might” not bleed as heavily or be in as much pain tomorrow as I was in today and yesterday.

After 24 years, I’m tired of this constant every month battle of wits, this false notion of “thinking positively and the pain MIGHT go away” bullshit.

The reality of the situation is that I have an incurable illness which is an immune deficiency, which means it ravishes my entire body, and I HAVE NO CONTROL OVER THIS ILLNESS BUT TO LET IT RUN ITS COURSE when the pain flares.

I want to get this through my head as well as through everyone else’s heads - go look at my list again of what I’ve tried over the years.

Eventually we will all have to come to a place of acceptance - that there is no overcoming or beating this illness - only living with it…if we are up for the job.

Some days I wonder how much longer I’ll be up for the job.

On Monday September 28, I woke with very very slight spotting, but feeling like a mack truck had run over me. I attempted to call in sick an hour before the start of my shift, but couldn’t reach anyone. After talking with the director, I agreed to come in for a half day, which for me is 3 hours.
I got to work and immediately popped 400mg of Advil liqui-gels. The low back pain and occasional stabbing uterine pain had me walking like a little old lady all morning. As I was cleaning up my classroom at 11am, I slowly picked up a full bucket of water and cried out in pain from the stress it put on my pelvic muscles. My eyes welled with tears and I set the bucket down, whimpering.
I let the bucket sit and told my co-teacher I could not lift it. I went about closing up other parts of the classroom, which entails putting plastic sheeting over the shelves to keep dust and dirt off of the classroom materials, since we’re an outdoor classroom. As I neared one of the shelves with a plastic sheet, I tripped over it. The act of me trying to catch myself mid-stumble set off my pelvic pain anew. I about started crying, and declared out loud that I was definitely done for the day, and that my previous guilt and doubts could now shut the hell up.
I went home and spent the rest of the day on the couch medicated on Tylenol 3 and Ibuprofen. I went to bed that night freezing cold, so I put the heating pad on and rotated it from my feet to my thighs to my pelvis and back to feet again until I warmed up. I think the house was 68°F to 70°F but of course my hormones thwack my core temp regulation.

On Tuesday, September 29, I woke feeling fine. I got ready for work, ate my breakfast, and marveled that I was not in pain, though I was still spotting. I was pleased that I didn’t have to call in sick.
However, just as I was about to go out the door, I was seized with full body hot flash, hypoglycemic attack, and nausea. The spotting increased and was dark brown in colour, whereas on Monday it had been brownish/pink.

I tried to call substitute teachers to fill in for me but since it was half an hour before the start of my shift, I could not reach anyone in that short of time. I left messages and went to work, anyway, taking a wait-and-see attitude, thinking maybe the pain would not get too bad. I popped 400mg of Advil liqui-gels as soon as I got to work. The director was shocked to see me after I’d gone home in such pain the day before. She talked to me about her daughter, who also suffers from bad menstrual cramps. She told me how her daughter says she gets a numb like feeling in her upper thighs/tops of legs, and that’s how she knows the pain will be bad. I explained to my director that there’s a whole mess of nerves in the pelvic region, and that when pain flares up, these nerves become irritated - these are the same nerves that also travel down the legs, and so the pain travels, too:

She said her daughter often vomits from the pain, and that it lasts only the first day of her cycle, and then she’s alright. My director further added that she too used to vomit from the pain and only had it really bad on the first day.

The pain for me abated, and I was able to get through an entire morning just fine! However, when the last students left my room at 11am, I realised I was very hungry. I began snacking before the lunch rush - three classes of children come outside to have lunch around 11:30am, and I turn into part of the lunch crew. So I snacked a bit and then the nausea started. Oh no, I thought, the pain can’t be far behind. A hot flash followed the nausea, and the spotting increased with some pain, but I stuck it out, and the pain again subsided. I made it through an entire day of work. I came home and still had good energy, which lasted into the evening. I picked my husband up from the BART station and we went to dinner, even. I felt energetic and cheerful and enjoyed every minute. The pain didn’t return again until around 9:30pm, at which point I put myself to bed.

I got up this morning and wanted to cry. The pelvic pain has so far been dull, achey and minimal, but my emotions are seriously fubar, so if anything, today was needed off work as a mental health day, anyway.

For the past several days, I’ve been doing the large hip circles I mentioned last month, because it helps me stave off the pain.

I got back in touch with my Qigong practitioner to see if she’s teaching Qigong class again - she’s not. Says no one is showing enough interest to justify it. But what about one-on-one sessions? Meh.
She wants to perform Chi Nei Tsang on me again, though. I will do that and another Liver/Gallbladder cleanse, which is a dietary program which lasts for a month.

I’ve also gotten back in touch with my masseuse, and requested regular sessions with her, citing that the muscle memory in regards to the chronic pain is getting beyond my control to manage, and I need her help. She’s more than happy to see me. She wrestled with endo for years before finally giving in and getting a hysterectomy. She found that the pain didn’t stop, and realised her muscles still held the memory of the pain. She had to train her muscles to let go of that. It took years, but she succeeded.

So that’s where it’s at.

I normally type in this blog when I’m bedridden from the endometriosis, when I’m reporting about a doctor, or when I’m chronicling my body’s reaction to foods and/or meds.

However, this evening I would like to talk about what my life is like when I’m not in debilitating pain!

A week ago last Wednesday was the last of the endometriosis pain for a few weeks. Since that time, I’ve been bicycling to work, which is a two-mile round trip. I pedaled on Friday, September 11, Tuesday, September 15, and today.

Several years ago, I used to bicycle 17-35 miles all in one go, once a week. I stopped doing that after I had laparoscopic surgery to diagnose me with endometriosis in 2007. That same year, I lost my bicycling buddy (she got married and moved away). Since that time, I’ve not had the motivation to continue biking, and I feel bad about that. It did take a few months after surgery before I even began to feel healthy again, but still. I should have gotten right back on the bike.

Anyway, I biked to work on the 11th despite heavy fatigue from the last of my painful cycle. On the 14th I did not bike to work, because I had a dermatology appointment to drive to immediately after work. I would have pedaled were it not for that appointment. That afternoon however I did have some pelvic pain, so that would have sucked while biking anyway.

Now that I work very close to where I live, I can bike to work. So when my body allows it, I pedal two miles a day round trip, and it’s hard work until I build up all my muscle and stamina again. There aren’t even any hills right where I live - it’s flat! Alas, it takes time to build myself back up. Which brings me to the next statement -

Today I bicycled FOUR miles!

I forgot a portion of my lunch at home today, so on lunch break I pedaled back home to get the rest of my lunch, then pedaled back to work. It took 20 minutes to go 2 miles with a quick pit stop.
Now get this - back when I was an avid cyclist, I could go 7 miles in 20 minutes, INCLUDING hills.

This of course is a personal challenge - to get back to where I used to be as a cyclist.

Next week is already going to be one week pre-menstrual again. I’m not looking forward to it. So far this month, I will have about 10-13 days all told of feeling healthy and vibrant before the symptoms return and I get all worn down, heavy fatigue, PMS, cramping and then the bedridden again. I’ve already used up two of those 13 days. I sigh heavily but then resolve to live the next 11 days as well as I can, and enjoy life the best that I can, until the darkness falls once more.

People who don’t have chronic issues can’t understand the darkness - the severe depression that comes with not being able to leave the house for two or more days at a time. This statement does not apply to just chronic PAIN, but to all types of chronic illness. If you have a chronic issue that prevents you from living your life for two or more days each month, you know you are a soldier and that I march right along with you.

Live when you can, and breathe patience when you cannot, but don’t ever give up.

When I got home from work on Friday, an ant invasion awaited my attention. I had just wanted to take it easy but that was not to be. I spent the next four hours stooping, bending, vacuuming, spraying, ripping up the carpet and killing more ants who had come up through a crack in the foundation.
Ugh. That did me in. I was in a lot of pain in my low back, thighs, knees and calves all of Friday evening, lasting through to today - Sunday.

Today I need to get more laundry and dishes done and I’m not looking forward to it. :(

I really wish I had a helper.

My husband is not a good helper. He has band practice twice a week on Tuesday and Sunday, and sacred gaming with his buddies every Sunday night. He absolutely refuses to give these things up, even to make time for his stubborn dying father.
For example, his father’s wife called this morning to tell us they’d be stopping by to drop off baseball tickets and their house key for him, and to generally stop by to see him. She BOUGHT the baseball tickets for him and his father to spend a day together for his father’s birthday this coming week.
My husband responded by asking ME if I’d be around to collect these articles from his father because he’d be busy with band practice.
Mind you, he’s in a local band with no gigs on the horizon. But he HAS to be at band practice twice a week, no questions asked, or else he bristles.

Through the week, my husband works until 6pm, gets home by 8pm, then spends the rest of the evening working on several side projects for three different publishing companies who have contracted him.

I feel like I’m the only one dusting, vacuuming, doing dishes, washing the floors, cleaning the bathroom, kitchen, cat box and managing the continual ant invasions. In the three years we have lived here, this is the first time we’ve had such forceful ant invasions. The landlords have even sprayed around the outside of the building and have put ant gel bait inside for us. We have used cinnamon oil, Bugs-R-Done spray, and even the ultra toxic RAID in some cases, plus ant traps - all to no avail. It’s a bad year for ants.

My husband does dishes maybe twice a week. Granted, the dishes are more mine than his, cuz he eats out all the time, but it’s still overwhelming for me. He vacuums maybe twice or three times a month. He rarely remembers to change the filters on the hepa vacuum or the filter fan in the bedroom.

He has been saying for about a year now that he wants to get a dishwasher because he cannot stand doing dishes by hand all the time (and neither can I). But we have yet to see a dishwasher grace this household. He promised again this weekend, then hemmed and hawed and said that a used one he found sounded good but an hour drive each way was not worth it for him.
WTF!!! Everything is up to an hour drive each way in the Bay Area!!!

I keep telling him verbally and often that the housework is too much for me to do, that I need help, that I need a maid who we can hire off craigslist who WILL do dishes and laundry because I simply do not have enough spoons to do all this on my own.
I will have to spell it out for him that I NEED for HIM to hire us a maid, because I cannot afford it.

We’ll see how that goes.