So it’s official - I have re-emerged from the underworld to enjoy life once more, for about 19 to 22 days, hopefully consecutively.

After whining about missing two parties Saturday night, I ended up attending yet another party via Skype. My friends in Michigan were having a party and so I chatted with them first on IRC and then on Skype so we could do video/voice instead of chat. :)

And then after that, my husband decided he was going to head over to one of our local friends’ parties, so I said ‘hang on’ and quickly changed out of my pajamas. I was still on Tylenol 3 Saturday night for the pain, though the bleeding was subsiding again. I took it easy at the party, which appeared to be winding down by the time we got there, anyway.

On Sunday, my husband did not have band practice or game night scheduled, so we decided to hang out together and do something other than housework, which we hate. I was feeling much better, so we decided to go for a hike. The walk we’d taken on Friday had struck something in me - I was determined to really get the ball rolling on taking back my body this year - so having lived after going for a walk during the throes of endometriosis, I decided that coming off of all that pain, we’d go hiking. I wanted to be near the ocean, since it was still brimming with energy after the horrific earthquake in Chile had triggered tsunami advisories and warnings.

My husband mapped out Muir Beach, and we headed out.

Of course, that’s when the bleeding and cramps decided to return.

Determined, I loaded up on 600mg ibuprofen gel-caps, extra pads and water, and off we went.

Once there, I was super relieved to know there were portable toilets on site, cuz I really had to go. I wondered if this might ruin my hiking experience if my body was going to keep bleeding and cramping and doing the “i really gotta pee” thing every half hour or less.

Still determined, I used the bathroom and we set off on our hike, no turning back.

I walked reeeeeeally slow and was out of breath almost immediately. I was afraid I wouldn’t even make it to the top of the first hill off the beach, much less try to complete the entire hiking path. People of all ages, including the elderly, passed me as though I were a turtle.

I remarked to my husband that I wished I’d worn my yellow shirt for endometriosis awareness, or a shirt that reads, “I have an incurable debilitating illness”. I felt like I owed people an excuse for why I was so slow. I felt like every person who passed me was judging me. In fact, one yuppie couple did judge us as they passed us. They were talking about fat people and not being in shape and all that, and as they passed us, they stopped talking about the subject. I wanted to yell out HONEY! I SURE AM IN A LOT OF PAIN FROM MY INCURABLE AUTOIMMUNE DISORDER, BUT I COULD GO FOR A HOT FUDGE SUNDAE RIGHT NOW!

heh…maybe next time I’ll be openly snarky.

Throughout the hike, my husband asked me if I needed to stop and rest. He was very patient with me and did not get too far ahead of me at any time. He encouraged me the whole time, despite my fears and insecurities about being able to go very far.

When we got to the top of the next hill, we got an amazing view of the cliffs and the ocean. That’s when I got my courage and strength.

I think we went two to two and a half miles all told, and as the sun was really beginning to set, I told my husband we should turn back around. We had been looking for Pirate’s Cove, but hadn’t found it. I was sad about that, but at the same time I was so proud of myself for how far I had come. On the way back, I had bursts of energy that had me nearly running down the path. Then I tried to leap over a muddy spot, and jarred my pelvis at just the wrong angle, and it set off intense cramps.

The rest of the hike back to the car was painful - I had to urinate, my pelvis hurt, my legs were beginning to shake nearly uncontrollably, and I was getting very cold.

But we made it back! We did it!

We were both so happy to get back to the car - even my husband said he’d gotten quite a workout. I had to pop 600mg more of ibuprofen gel-caps and a half of a Tylenol 3.
To celebrate my awesome trek after having been bedridden 24 hours prior, my husband took us to The Melting Pot, where we ate ourselves into a coma.

TAKE THAT, YUPPIE HIKERS FROM HELL. :)

Wow, déjà vu.

Just like last month, I went from being bedridden with endometriosis to being sick with a virus.

Once again, I’m kicked when I’m down, thanks to my immune system being deficient, thanks to endometriosis and allergies and lord knows what else I have going on immunologically.

Friday night I was at a taqueria eating dinner with my husband when suddenly I didn’t feel well.
That night, I had 3 episodes of diarrhea. I was uncertain whether it was a food reaction or food poisoning.

On Saturday, I had 17 episodes of diarrhea. I was more certain that it had to be food poisoning, since I’ve never had an allergic reaction this bad before. I barely ate a thing that day, and it was a struggle to even take water.
My entire trunk region was sore. I felt like I’d been doing too many situps - the stomach muscles were strained.
My husband took me to the store, and I am not kidding - I bought baby wipes and diaper rash cream for myself.

On Sunday, I began eating Cream of Rice with mashed banana. However, Sunday evening, we were at a friend’s house and he’d made some wonderful food, as did his other guests. I partook of a thin slice of steak, some kielbasa and onions, and some cole slaw. I drank a Vernors soda, even though it has corn syrup in it, because where I grew up, Vernors is what you drank to soothe an upset tummy.
Within an hour and a half, I had moderate to severe stabbing stomach cramps. I had to steel myself from the pain. When we got home at 9pm Sunday night, the diarrhea began - 8 episodes of it.

Today is the second day in a row that I did not have diarrhea upon waking. Today is the second day in a row that my stomach and intestines tried to stabilise - until I fed myself something other than Cream of Rice with mashed banana. This afternoon it resulted in moderate nausea and stomach and intestinal gurgles. I’m worn out. I’m tired as hell. And I worked a full day today on top of it.

I didn’t want to go in to work today, but I was still partially in denial about actually being SICK sick…even though on my way to work, I called to cancel my appointment with a physical trainer. To be fair, I took my temperature at work and it was 99.8°F at 11am. I hinted that I should go home, but the director told me I was fine. The secretary told me I was fine.
What they meant was, “Lunch rush is coming up in the next half hour, and we’re short staffed. You have to stay, we need you.”

I did stay on, but that’s when I called my doctor and scored an appointment after work. The doctor told me that it’s not JUST a food reaction I’ve been having, and it DEFINITELY WASN’T food poisoning.
The doctor is certain that I have an enterovirus. She said it’s going around - she’s seen patients with my exact symptoms for over a week, now.

I know that what’s going on with me IS also a food reaction on top of the enterovirus, because my left thumb is covered in flaky dermatitis, and my thumb is cracked and will probably start bleeding tomorrow.

According to MedScape, I was harbouring the enterovirus for up to a week before the diarrhea hit me on Friday. It says, “The average incubation period is 3-10 days, during which the virus migrates to regional lymphoid tissue and replicates. Minor viremia results, which is associated with the onset of symptoms and viral spread to the reticuloendothelial system (spleen, liver, bone marrow).”

Another MedScape article says, “The enterovirus enters the human host through the GI or respiratory tract. The cell surfaces of the GI tract serve as viral receptors, and initial replication begins in the local lymphatic GI tissue. The virus seeds into the bloodstream, causing a minor viremia on the third day of infection. The virus then invades organ systems, causing a second viremic episode on days 3-7. This second viremic episode is consistent with the biphasic prodromal illness. The infection can progress to CNS involvement during the major viremic phase or at a later time. Antibody production in response to enteroviral infections occurs within the first 7-10 days.”

I could have caught it at my neighbor’s house when we went over there last Tuesday to watch the season premier of the last season of LOST.
I could have caught it from my new psychiatrist’s office on my first visit.
I could have caught it at work.
I could have caught it anywhere.

The bum deal out of all of this is that I went from being bedridden with endometriosis pain right into being laid out flat with massive diarrhea for three days. I lost two weekends of fun out of that deal. I didn’t get to see an old high school acquaintance who was in town for the weekend. Worst of all, I went out on Sunday to a party while still sick with the virus, because I was convinced it was food poisoning and/or food reaction I was still dealing with, and now I may have infected other people.

When I left out of the doctor’s office, it was raining, and I hadn’t brought my raincoat with me. I walked in the rain back to my car, parked a block and a half away. When I got home, I took a blow dryer to my hair, put some dishes in the new dishwasher my husband recently bought, scooped the cat litter, and got into my jammies and crawled into bed. I crawled out of bed to eat some yoghurt while my husband ate dinner - we sat on the couch and watched TV. Well actually I laid on the couch wrapped in blankets. Viruses make me feel like I’m freezing. The house is 71°F right now…

I’ll be staying home tomorrow - I made sure to get a doctor’s note the moment the doctor suggested I stay home. I called work the moment I left the doctor’s office to let everyone know I won’t be in.

Stupid immune system.

I guess if one can find a silver lining… I lost 6 pounds in 3 days. I’m down to 158lbs.

Last night I went to bed around 9:30pm. Tonight I’m doing the same. I’ve been thoroughly exhausted for the past two days. I’m bloating like crazy. My lower legs and ankles are swollen. I get worn out and breathe laboriously just by walking or having to get up.

I take my vitamins and I’ve upped my Chinese herbal supplements to 2 pills twice daily. I got anxiety so bad around 3:30pm today that I thought I’d have a panic attack at work. I had to do my breathing exercises and it almost didn’t help. I had to fight through it with anxiety, racing heart and feeling of being suffocated. I left work at 4pm. I wonder if it’s PMS and I’m just stressed out by the data collecting I have to do on the job - I’m just an assistant - my head teacher should be doing all of this. She should have the long day, not me. Ugh. Give me the damned title and pay already, people.
So perhaps it was just that. But part of me is now wondering if it’s the herbs. I’ll talk to my acupuncturist tomorrow. I’ve got to ask her questions about how to deal with bloating and fatigue, as well.

I’ve been feeling low dull pain with the bloating since Monday. On Saturday and Sunday is when the right side ovarian stabby started - at least that abated by Monday.

I took 400mg Advil gel caps before bed last night - doing the same thing tonight.

On a bright note, my husband’s gym is offering a special so I signed up today after work. Half of what he pays per month, plus a month free, plus a free session with a fitness trainer. I told the trainer what my physical restrictions are, about my illness and what my goals are - we are to meet after this upcoming round of doom is over.
We are also experiencing a break in the rain - I think it’s rained constantly for a week and a half, I forget. Today there was no rain. Tomorrow is supposed to be dry, too, and then the rain returns on Friday. Imagine my mixed feelings at this - it’s bad timing for my health, cuz I’m winded just getting up out of a chair right now, and my body feels like lead. I want to bicycle but if I bicycle the one mile to work in the morning, I’ll have used up too many spoons to get through the workday, which involves literally running after children on the playground, both to entertain them and to get to them before or right after injury happens. There’s also the lunchtime cleanup, which involves sweeping around and under 3 picnic tables. It may sound easy to some but operating a broomstick really hurts my back and sides and abdomen a few days before menses. Then I’d have to bicycle back home - if I made it back at all without collapsing, I’d surely collapse for the night as soon as I got home from work. So bicycling this week is out of the question - not enough spoons.

I’ve been doing slow stretches of my arms up as far as I can reach and holding it, then tilting to one side, then the other - very slowly. My back feels like I’ve pulled the muscles. This is ‘normal’ and happens every single month, right before menses, as my body tries to fold in on itself like a pillbug. I’ve also been doing the large hip circles I always do to try to manage the pain. Sometimes it’s really painful to begin working the hips, but after awhile things loosen up and I really do feel better. So it is part of my pain management process.

Gah. It’s nearly 10pm now. I really need to be sleeping but I really needed to provide an update on the premenstrual madness.

Goodnight!

Saturday (yesterday) I had upper and mid-back pain upon waking - I think it’s my pillow again. I got out of bed, stretched slowly, got moving around and felt a lot better. The bleeding had stopped overnight, but I knew it wasn’t the last of it. I went about my morning, anyway, and shortly realised I was very cranky. This is from having taken medication with codeine in it (Tylenol 3). Every month I get angry and aggressive, not just because I’m fed up with being in pain, but as a side effect to the codeine. I react the same way to marijuana, which is why I’ve been hesitant to go and get a medical marijuana card from the local pot club.
I’m also wondering if my upper back and neck pain is attributable to the codeine - I’ve been noticing TMJ symptoms again since being on Tylenol 3 this round.

Because I was cranky, I was snapping at the cats. My husband asked me to please calm down, because I was making him uneasy on his birthday. So I took the last .5mg pill of my Lorazepam stash.

By the time we got out of the house around 1pm, I had some minor pain again, but was feeling quite mellow from the Lorazepam. As we walked from our car across the street to the computer shop to pick up our laptop and my external drive, however, the pain reached about a 4.5 on the pain scale.

I continued to deteriorate over the course of the afternoon. My husband got some coffee at our favourite coffee shop (Peerless), and I ordered a raspberry tea. It was quite tasty - and I took some ibuprofen with the tea. When we got home from our errands, it was just about 4pm, so I took a nap while my husband stepped out to visit his favourite game store.

He woke me at 5pm to tell me we needed to get ready for dinner. He’d organised a sushi outing in honour of his birthday. I dragged myself out of bed, and as I woke up, I felt okay - no cramps. Yay!

While at dinner however, the pain returned. At one point I gasped and clutched the table, and decided enough was enough, so I dug out a half a Tyelnol 3 and swallowed it down with some green tea.

Within half an hour, I began to feel very light-headed, then outright dizzy and floaty. I became concerned for myself, wondering what was bringing this on, since I’d only taken half a Tylenol 3. I wondered if something in the sushi acted as an accelerator for the Tylenol 3. I wondered if I’d not had a full enough stomach when I took the Tylenol 3, then scoffed at that idea.

After dinner, we enjoyed a very nice dessert of gluten-free chocolate decadence cake, purchased earlier that day at Mariposa Bakery. My husband requested the cake all on his own - I had nothing to do with it. :)
This was the same torte-like cake we had gotten for our one-year wedding anniversary back in October. Everyone got to enjoy a slice, and judging by the empty plates, they all loved it. Even the owner of the sushi restaurant got to have a piece, and asked me where he could get one of those cakes for himself!

After dinner and dessert, we went on to the local tiki bar. I had forgotten my purse in my car, so I went back out to fetch it. By the time I got back inside the bar, I thought I might pass out from the dizziness, and people could actually tell I was not well.
It finally dawned on me what was going on - even though I’d taken .5mg of Lorazepam some six hours before the half Tylenol 3 pill, there obviously was a drug interaction going on. I stepped outside to phone the pharmacy, nearly tripping over people on the way out. My husband’s friend accompanied me, despite my gentle protests, and waited next to me while I talked to the pharmacist. The pharmacist acknowledged that yes, despite the time lapse, there could still be an interaction, though it shouldn’t be dangerous - it just enhances what side effects are already present in each drug - namely dizziness and fatigue.
I was okayed to take some more Ibuprofen, though.

I went back inside and let everyone know what was going on, and that I’d be fine. People suggested I should go home and rest. I told them meekly that I was afraid to be alone at this point. The pain was ramping up, I was having a drug interaction, and I could not take more Tylenol 3 to combat the pain. So I hung out, and people kept a wary eye on me. Bleh. It’s just, if I passed out, fell and hit my head, or the pain got to be a 10 on the scale, I didn’t want to be alone when it happened - I’d much rather be where people could see it and immediately rush me to the emergency room.

Sometime after 10pm, the pain was too much to bear, and I called it quits. I assured everyone I could drive home myself, that I live only a mile away. My husband’s friend (the same guy) walked me to my car, and I thanked him. When I got home, I texted my husband and his friend that I made it home safely.

I was able to sleep deeply on and off, for only about 20 minutes at a time. Then either the endo pain or the neck pain would bother me awake again. I texted my friends from time to time to see how they were all doing at the bar.
My husband’s friend is so awesome that he also tended to my hubby for the rest of the night, and was the one to bring him home “marinated” - probably sometime after 1am. I thanked him for being such a good friend and hanging out with my husband. They don’t get to hang out enough, those two.

Once my husband was home, I slept like a log, until sometime near 4am, when the damned cat began howling and scratching at the door again. I think the cat’s got dementia, I swear. He’s nearly 14 years old.

The pain got to a 6 on the pain scale on Sunday December 6, and I took half a Tylenol 3 while working behind the scenes at the Dickens Fair with my friend. The pain encompased my entire pelvic region into my lower back, and down the front and sides of my hips and thighs, nearly to my knees. Every time I bent forward, I got a sharp pain in my upper legs.

Also on Sunday is when the ass bleedy began. This happens every month right before george.

The pain dissipated by Monday morning, and I found out later that the pain was overshadowed by my body coming down with the flu. By 3pm I had a 100°F fever and was coughing a lot, had a horrible headache, and my left shoulder/neck/back had gone out in the same way a pinched nerve takes me out. I developed diarrhea as well. Initially, before I realised I had the flu, I thought my shoulder was going out because of how stressed I’ve been over finances lately. The shoulder/neck pain started upon waking, and grew worse over the course of the day. By 3pm when the fever set in, I had to rethink the stress theory and go with the flu as reason for shoulder/neck pain. My lymph nodes in my neck are HUGELY swollen, and I’m sure that’s impinging on my buldging disks in C4-6, setting off the pinched nerve.

This morning, the flu continued ravaging my body, and the pre-george pelvic pain also returned. I’ve been wrestling with it all together, all day. As of Sunday I’ve been dipping into my supply of Tylenol 3, which is supposed to only be for the endometriosis, but holy cow, the neck/shoulder/back pain is freaking unbearable.

I went to the doctor this afternoon - she showed no sympathy - said my fever is due to not hydrating enough. Won’t give me Soma (a muscle relaxer) for bum shoulder/neck, says it’s part of having the flu. Bitch.

I did not work on Monday because it was in the 40s fahrenheit outside, so I was dismissed for the day by just after 9am. Good thing since I hopefully didn’t infect anyone. Today I did not go to work, and because I still have a fever (currently 101°F), I will not be going to work tomorrow, either.

I hate to have my period when I also have the flu, but honestly if my body makes my period late in order to deal with the flu, I could end up missing next week at work, too. I am NOT happy about this. I NEED the money BADLY. :(

I am confident that I got the flu from working at Dickens Fair. The first weekend of Fair (Thanksgiving weekend), several of my cohorts fell ill for days. This past weekend, more of us fell ill. This happens every time we all work faire, anywhere we work faire, whether it’s outdoors or indoors, whether Renaissance Faire or Dickens Fair. This means I am rethinking attending or working faire ever again. Filthy humans.

Back to the pelvic pain update - since I’ve been consuming a lot of coffee, I noticed that the cramps I’ve been having come in short, sharp piercing bursts, rather than the usual dull achey drone. So for me personally, caffeine should remain a no-no.

Next update probably when menses actually arrives.

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.

This morning I woke and cautiously moved about the house, getting ready for work. I’ve only been spotting today, and I’ve had minor pelvic cramping and low back pain intermittently throughout the day.

My energy has been good all day, and my mood has been stellar compared to the past week. I’ve felt good today.

I am a bit tired but not excessively tired. I wonder if the lack of Tylenol 3 killing my liver has had anything to do with the lessening of fatigue. Maybe tomorrow I’ll be super tired, who knows. I do know that I’m still insanely constipated.
In any case, the first few days after bedridden is always different. Sometimes I feel I could go dancing, other times I feel like I should spend another day in bed.

I have a confession to make, though. I am convinced that this month was so rough for me with pain and heavy bleeding because I’ve been eating my weight in chocolate for the past couple of weeks. :p
It’s that time of year - Hallowe’en - when all the yummy spooky chocolate is being made by our local awesome chocolatier.

I went back through my calendar and realised I’ve been counting from start of period to start of period to predict health for the coming month. That was incorrect because from the starting point of menses to the finish point of menses is anywhere from 3-5 days…sometimes as many as 7 days. So I need to count from the END point of menses to the next starting point of menses for health predictions.
When I went back and did that on the calendar, I saw that just as ovulation is consistent at 8 days into the new cycle, my bedridden time also seems to be consistent - every 21 days with hardly ever a deviation.

So I start the clock. I look out into the depths and squint, cautious and always anticipating the next pain attack could be sooner. And I remember to live my life until the next bedridden time comes for me.

Too bad it’s not every 33 days. Then I could start calling george a cylon. Oh hell why not. George has gone from punk rocker to cylon. Like cylons, the bastard won’t die, and grows back…

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.

Back on September 16th, a day before my birthday, I wrote a wishful thinking post. I had resolved “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”.

The very next day, on my birthday, while at work, I was suddenly seized with severe bladder pain, which lasted a few minutes. This happened around 11:45am, during the lunch rush, where I’m supposed to be monitoring children aged 3-5 eating their lunches, keeping them in their seats, resolving fights, reminding them to wipe the table and sweep up after themselves, and help them open up their food packs. During the lunch rush is when I am needed by no less than three children at a time, for over an hour, for one thing or another. All told there are around 50 children at lunchtime, and there’s about five or six adults. It’s about 1 adult per 8-10 kids. For some reason, once you mix the age groups, the 1:4 or 1:6 ratio for the 3-year-olds no longer applies. So it’s constantly overwhelming at lunctime, and here I was getting unexplained knifing pain in my bladder. It wasn’t uterine. It wasn’t ovarian. It wasn’t cervical. I don’t normally get bladder pain.

Now, about a week prior, I’d had a yeast infection, which I promptly took care of with Diflucan. I got it because I didn’t shower before intercourse. Women with endometriosis are prone to yeast infections at the drop of a pin, and you and your partner both need to be clean before intercourse to spare you the chance of infection. I lagged in my duties.
Anyway, I wondered if Diflucan can cause a bladder infection, but in checking the side effects lists, I don’t see evidence of that. Perhaps the yeast infection had turned into a bladder infection? I’m still wondering about that.

So the bladder pain I had on September 16 only lasted a few minutes, then was gone. A few minutes of course feels like an eternity while it’s happening, but it did pass.

I did pretty good for the next two days - Friday and Saturday - though I did have some pelvic pain twinges on Saturday September 19. So perhaps I was good for only ONE day if you wanna get technical.

On Sunday, September 20, I woke with severe low back and pelvic pain.

As I was getting dressed, my back went out - my upper left scapula was pinched the most, and it was hard to breathe. I could feel the pain under the back of my ribs. I had no range of motion. I spent most of that day with intermittent back, pelvic and shoulder pain. I took half pills of Tylenol 3 and whole pills of Ibuprofen all day long. The pain would seriously disappear for minutes or an hour and then return again. It was crazy.

On Monday I had continued flank pain, and a cankre sore popped out around 11:30am. I went to the doctor right after work and was told I had swollen lymph nodes, that I was fighting something, but that I wasn’t contagious. The low back pain continued through the evening, and I went to bed with a heating pad that night.

Tuesday was more of the dame - low back pain, but get this - I awoke with shin splints. WTF!!!
I also had developed a sore throat, sores forming under the back of my tongue, moderate fatigue, and sore shoulders again. That day I also had some pelvic pain, and my left thumb broke open again. I had a nagging headache by 8pm that night. I napped when I got home, and my body temp dropped during the nap - I got goosebumps, I was so cold, and the house was 73°F.

I seriously started feeling like I was going crazy. But now, after reading the side effects for Diflucan, it all makes sense. I just wish I’d been more intuitive the last times I’d taken Diflucan, to establish whether this is always true - whether I always have these side effects - or if it’s something new because my body continues to grow weaker because of this stupid immune system disease called endometriosis.

Wednesday - sigh a breath of relief - I felt better.

But we’re not done, yet!

On Thursday, September 24th, I felt quick knifing very low uterine/bladder pain 2-3 hours after consuming 1.5 cups of Sierra Mist pop, which I was craving. I never crave pop anymore, so this must be a serious bout of PMS coming on. Of course, pop contains corn syrup, which ALWAYS causes pelvic pain whenever I consume it.

I didn’t bike to work at all that entire week.

On Friday, September 25th, I experienced intermittent dull uterine pain all day. However, after work, I decided to bike to my therapy appointment and from there bike over to the company BBQ. I was tired but I did it, in a show of stubbornness.

That night, around 10 or 11pm, I became very dizzy as I was leaving my friend’s house. The pelvic pain had ramped up while I was hanging out with my friends, and so I’d taken 600mg Ibuprofen. I don’t think the dizziness was from that, since I take Ibuprofen so frequently.

On Saturday - yesterday - our town was experiencing another heat wave. Despite being 87°F outside, my husband and I shopped at some local Halloween stores. Yesterday I consumed a white chocolate raspberry blended mocha (with cow’s milk) because I was really fatigued and craving the caffeine (HELLO PMS!).
Last night my husband and I were intimate and right afterwards, I felt nauseated, and then the cramps started. I checked myself and there was brown blood. I thought for sure I’d started my period. I went to bed wearing a pad but the bleeding stopped, never touching the pad.

Today I’ve been seriously tired. I slept for about 10 hours and haven’t wanted to get up all day. The low level nausea has been with me all day. I’ve had the feeling that my period is starting but every time I check, it’s not there. I’ve had annoying low back and pelvic pain all day.

It’s nearing 5pm and I’ve been on the couch the entire day. I had planned to attend a birthday party for a friend, a parking lot sale, and then see another friend play with his band tonight.

I’ve missed everything so far but the band, and I’m not sure I’m up for that, either.

So let’s recap - where did those 11 days go that I was so excited to live for?

Of those 11 days, I got to enjoy 2 days pain-free.

2 days.

Out of the past 27 days, I have enjoyed roughly 8 days pain-free.

I have not gone back to yoga class, and I’ve been in too much pain to do the yoga video that I own.

I have continually doing slow stretches and fighting through the pain. I often do the wide hip circles when not out in public (cuz doing those makes one look like a pole dancer, heh) in an attempt to ease the low back and pelvic pain.

To anyone who doesn’t suffer from chronic pain, I hope this gives you an educated visual, and I hope you understand it a bit better when I tell you just how tired and depressed I am.
Just because I have high hopes, doesn’t mean my body wishes to cooperate.

Oh and to those of you who still think wishful thinking and being positive will end my pain, you can go to hell.

I am so tired and weak. I went to bed after 2am and got up at 8:30am. That’s not bad - I usually sleep about 6.5 - 7 hours per night through the week anyway. I’ve been feeling very sore all day - my hips, thighs, knees and ankles hurt. But I did not walk intensely or exercise a lot yesterday. Maybe I’m so sore *because* I’ve not been running around all day since Friday at work?

More likely it is george. He always makes me feel like I’ve been run over by a mack truck. Then again, I’ve not been eating so well, lately. That will do it, too. I’m still waiting for george to show up. My personal computer calendar says he’s due today. The laptop calendar says he was due yesterday. Who knows anymore. My cycle has been off since February.

I have done nothing physically active all day today. Sunday is usually my day to get all the housework and laundry done before the work week begins again. Today there was so much going on and I totally cleared my schedule.

• There was afternoon tea in the backyard, courtesy the neighbor upstairs.
• There was a sheet rock party at a friend’s house - a work party to help him get his new house in order so he and his wife and infant can move in.
• Another neighbor in the back of the house needed help getting her digital converter box all set up because as of last Thursday, broadcast television as we’ve always known it in the U.S. ceased to be. I called the FCC and we got a guy to come out and wire everything up for my neighbor, because I didn’t know how. I have not had regular TV or cable TV for probably six years now, by choice. We just have DVD and VHS hookup when we want it. We did not purchase the digital converter for our home.
• A neighbor two doors down wanted me to babysit her toddler.
• A neighbor almost three blocks down wanted me to babysit her toddler.

I cleared all of it off the schedule because of george. I even asked my husband to go to the grocery for me because I couldn’t even manage that.

Regarding my diet, I’ve not eaten well for over a month. I spent 18 days in the UK and my fingers were cracked open and bleeding from all the gluten and yeast that kept creeping into my diet. Some of it was accidental, some of it was on purpose. I drank whisky because it’s friggin Scotland for chrissakes. You cannot deny me that experience! I had bandaids on no less than four fingers and my fingers were constantly in pain. I put lotion on several times a day to no avail because well, it’s a dermatitis allergic reaction after all.
I also found out that “glucose syrup” is corn syrup and wheat, because the UK has to explain what it is on all their labeling. I had been eating fudge because the UK apparently is known for its fudge. And it seems all the damned fudge has the glucose syrup in it. I didn’t check the label until I was back home in the states. Stupid me!

I know this month’s cycle is going to be crazy, if not downright brutal, because of the way I’ve eaten and all the alcohol I’ve consumed socially over the past month.

So yeah, I’m starting to record what I eat again, and I’m going to have to do more diet elimination again soon to find out why I’m still getting allergic reactions now that I’m back home eating my ‘usual’ diet again.

The thing that pisses me off the most is that despite all the allergy tests I’ve had, despite all the research related to diet and endometriosis, despite my own findings for my body with regards to food sensitivities - none of it has been proven as a direct link to endometriosis pain. I get so sick of the anxiety I suffer over eating something and then wondering if I’ll have immediate pain while menstruating or if my next cycle will be affected by something I ate days or weeks ago that somehow may still be wreaking havoc on my system. None of it has been scientifically proven for my body. It’s all speculation. I need some solid scientific findings for MY body.

And y’know, with how off kilter my diet was, I actually LOST weight on our honeymoon, because of all the hiking we did. And since I’ve been back to work, I bicycle to and from work every day. While at work, I run around with children all day, literally. And I kneel and bend and stand. I’m constantly going. With all that exercise, plus all the constant walking and hiking and climbing we did in the UK for 18 days, you’d think building up muscles and toning myself would have a beneficial effect on my system.
But no.

Hell, I’d be happy to just know whether or not the endo is growing back again, and where, WITHOUT having to have surgery again. Because if someone can say yes, it’s grown back, then I don’t have to feel like I’m going insane or imagining things.

In the meantime, I can’t focus. I started this journal entry around 3pm and it’s taken all day just to get this far.

I rarely take Tylenol 3 to quiet an anxiety brain but tonight I did. I’ve taken Tylenol 3 about three times in the past week before bed because of severe joint and low back pain as related to endometriosis symptoms. Tonight it’s just doing double duty.