I Will Not Suffer In Silence

Yesterday was Day 1. George was a day late. I suspect he was a day late because I went swimming on Saturday and also drank two Sangrias. The swimming was fun, I treaded water and moved my arms back and forth a lot to get in an upper body workout. We were at our friend’s apartment that day.

Sunday morning, I began spotting, and it was dark brown with clots already present.

At Noon Sunday, I attended a free Alexander Technique pain management class through my local dispensary. I intend to go every Sunday. The instructor helps train us to make better choices with the way we move our bodies relative to our pain issues. Yesterday there were three of us in the class.

After that class, which lasts an hour, my husband took me and our friend G to the movie theatre to see Inception. The movie was a nice little mindtwister, I liked it. After the movie, I used the toilet, and discovered a greyish mass in the dark brown and maroon blood clots when I wiped myself.
GREY! Like I’d see on my surgery photos of what colour the endometriosis is INSIDE of me! I was not okay with this!

Twelve minutes ago, I ingested a zero sized veggie cap filled with medical grade cannabidiol. The dispensary had them in 00 capsules, but I thought that since I’m already so sensitive to everything on the planet, I should try a 0, instead. So here we are, Waiting For It.

…

Twenty-three minutes have passed and I am now feeling a bit mentally cloudy, and I am burping up the taste of cannabis. I’ve always hated the taste and smell of this stuff.
The pain is still with me and has been hovering at about a 7 on the pain scale, with sharp twinges on the left ovary shooting me up to 8.5 on the pain scale every so often.

…

Thirty minutes in, and I’m feeling a bit nauseous. My stomach is gurgling a lot and I’m still burping up the icky taste.
I am drinking Hobee’s Cinnamon Orange tea, which contains black tea, orange peel, cloves, rose hips, and oddly, no cinnamon.

…

Forty-six minutes in, and I’m getting sharp uterine pains which radiate to my lower back. I don’t feel blitzed on the stuff like I would had I smoked it, but I am still waiting for pain relief. I am bleeding heavily today, and have already bled through a thick fabric pad to my underwear.

I am still sick and coughing up thick green mucous in the morning. My husband entered the bedroom after his morning shower and I began gagging on the scent of his shampoo again. He got all offended as he always does when I told him his shampoo is killing me. I told him it’s worse for me right now because not only am I on my period, I also have an upper respiratory tract infection going on, so my sense of smell is heightened, and along with that my chemical sensitivities. He promised tomorrow morning to use the unscented shampoo I bought weeks ago. I think he’s enjoyed not having my chemically sensitive self around while I’ve been at school. I spent all of last week in a motel, and I’ve been staying in a motel on and off for six weeks, so he’s not had to worry about chemicals and fragrances. I shocked him back to reality this morning.
We think we traced the source of the illness - the friend I suspected (M) says she suspects our other friend (P). The timing makes sense - we were both hanging out with P on Thursday, July 15th. M and her husband had given me and P a ride. That night, P had a cough. Then on Friday, M & P hung out again. M said P looked really bad by then. By Saturday, M was sick, and P had lost her voice, but still came out to another event - a friend’s birthday - which I also attended.
P showed up again for the AIDS Walk on Sunday, July 18th; we gave her a ride and hung out all day with her. M also showed up for the AIDS Walk. While P was not coughing so much, M was full on sick by now, coughing a lot.
By 7pm that night, I developed a cough. Four days later, I sounded like a barking sea lion in the evenings and mornings, and that’s where it is even today, another four days after that. My ears have been plugging up and my eyes have wanted to stick shut, they’ve been so gooey. My friend M says I have perhaps another week before I start to feel better, and her husband also caught the illness and has a full blown ear infection, now. UGH.
Despite all this, my husband keeps insisting on kissing on me, because he’s missed me so much. I warned him, and he doesn’t care. Boys.

…

We are at the hour mark now since I ingested the cannabis. As long as I don’t move around, the pain is about at a 4.5 at the moment. I am sitting with one leg crossed under the other on a hard wooden chair. I am uncomfortable and the foot tucked under my leg is falling asleep. So I will have to move. Let’s see if I can relocate to the bedroom and what that does to the pain level.

…

Okay, that was about 20 minutes of moving supplies and myself to the new location, from the kitchen table to the bed. I had to make the bed, set up the wooden bed desk, unplug and move the laptop to the beddesk, plug it back in, and move my homework 3-ring binders and supplies to the bed so that I can attempt some homework today.
At first, while doing all this, I noticed that there was a spike in pain, but I was happily dissociated from it. I could tell there was tightening in the pelvic region, down through my hips. I could feel a burning sensation, but it didn’t hurt. However, after nearly 20 minutes of movement, the pain screamed through the medication, and now here I am, sitting on the bed with a heating pad on my pelvis and a heating pad on my lower back, doing my breathing exercises.
All the movement required to transport things to the bedroom also kicked up the effects of the medication, and now I am even more fuzzy-headed than I was before. I think I may need to sleep, soon. Not moving is in my best interest.

My review of the edible cannabis so far is that although it takes an hour to kick in, I think it might be a viable alternative to the Tylenol 3, if I remember that I still should stay home from work and force bed rest. I accept the fact that there is nothing on the market that will both alleviate my pain and keep me alert and sober.

…

It’s been nearly an hour now since I moved location from kitchen to bedroom, and the sharp pains are still with me, dammit. I should not have poked the hornet’s nest. I am considering taking half a Tylenol 3 and some Ibuprofen at this point. The pain is at 7.5 on the pain scale, and burning.

…

Just over an hour since moving location, and two hours since I ingested the cannabidiol. I sat up instead of reclining back, and that helped the pain go down momentarily, but now it’s back again. The pain is still burning throughout the uterus and radiating to the lower back. Still 7.5 on the pain scale. The heating pads are not hot enough. I am going to rewarm them and also ingest 600mg ibuprofen and half a Tylenol 3.

This concludes today’s medicinal experiment.

Results: recommended alternative to Tylenol 3, as long as I do not move around. Experiment needs to be repeated when I have the emotional strength to try it again. Right now however, I have reached my emotional and physical breaking point with the pain, and I feel that I need the codeine, acetaminophen and ibuprofen cocktail.

4:52pm Update:
About four hours ago, I took a half a Tylenol 3 and 600mg of Ibuprofen, and I did that just over two hours after taking a dose of cannabidiol.

I slept for two hours.

Roughly 45 minutes ago, I took a second dose of the Tylenol 3 - only half a pill, because the pain started ramping up again.
Just over the half-hour mark, I was suddenly supremely stoned. Holy shit. I’m never this freaking high on one half of a Tylenol 3. I know this is the remnants of the cannabidiol, because of the way the high feels. I feel like I just keep ramping up and up, I feel like I’m being launched into outer space.

I uh… I’m gonna go lay down again.

I remembered that which I’d forgotten in last night’s blog entry - herbal tea.

My acupuncturist had prepared an herbal tea for me to take as part of my treatment through her. I had stopped taking it some months back because I suspected it was making my dermatitis worse. One of the ways my food allergies manifests is through atopic dermatitis - specifically on my left thumb. At my last visit with the acupuncturist, I said I wanted to try the tea again. I said this because I’m freaked the hell out over the endometrioma on my left ovary, and I don’t want the sucker to grow any bigger. I’m willing to take on as many new therapies and treatments as possible - like a hammer to the problem - if it will help.

A dermatologist I saw a year or two ago told me it’s impossible for wheat or any food to cause or agitate the dermatitis on my thumb. He said it is caused by my skin reacting to direct touching of detergents and other chemicals. My argument stands to this day that it is ALSO caused by ingesting allergenic food and drink. I fired that guy after the first visit - I’ve had enough of doctors telling me what they think is going on in my body, when I have repeatedly proven them incorrect. Remember the doctor who wrote off my endometriosis entirely and said I just have IBS? Remember the surgeon who said I don’t have endometriosis - that I only have dysmenorrhea, and so she refused to give me a laparoscopy? Remember all the doctors for years who fought against me asking for antibiotics right off the bat because they didn’t believe I can have an immediate sinus infection? Remember the E.R. doctor who said and wrote in my chart that the only cause for my acute pancreatitis at the age of 21 was because I must be an alcoholic? (the nurse told me the pancreatitis was from doctors giving me Cipro for repeat sinus infections every month for a year). Remember the humiliating experience of having to submit to STD testing because the doctor was sure my husband was running around on me, since that’s the ONLY way I can POSSIBLY have gotten cervicitis? She even tried to counsel me right there in the office about my relationship!!!!
So ah, yeah. Sorry for the lashing out. Guess I’m not ready to forgive people/doctors, yet.

Back to my thumb:
Within 24 hours of starting the tea again, my left thumb, which had been doing well, split open and started bleeding again. It has to remain fully bandaged when it does this, and looks like I have a broken thumb or something.
And of course, I’m being stubborn and still drinking the tea, because I’m sitting here thinking, “well maybe it’s the dish soap I used - it contains orange oil and I’m allergic to oranges.”
I’m still drinking the tea because yesterday my cramps were minimal, and I want to try to keep it that way by any means necessary - even at the expense of my poor little left thumb.

My current treatment plan:

• 1/4 teaspoon endometriosis blend tea in a cup of hot water, 2-3x/day
• My regimen of vitamins and supplements
• Acupuncture every 2 weeks (I want to increase this to every week)
• Massage when I can (I want to increase this to every week)
• Elimination of refined sugar
• Elimination of all dairy
• Elimination of caffeine
• Resumed elimination of alcohol (I’ve had some to drink every now and then since May 2010 but I’ve stopped again because I don’t like how it makes me feel in the moment anymore)
• Continued adherence to No Fly List (I’m still failing on stuff like butter, salt and chocolate)
• Continue with trusted pain medicine cocktail (Tylenol 3 and Ibuprofen)
• Continue with consciousness to posture, correcting gait, and administering large hip circles and yoga pose.
• Keep getting on my bicycle as often as possible.

And yes, I know, I need to get back into the gym, and I need to ride my bike farther than just running errands or going to/from work.

My current surgeon will not give me another laparoscopy until the pain becomes constant and unbearable. She wants to take a wait and see approach to the endometrioma. She says if she goes in and carves the sucker out, another one will just grow back in its place. She knows I don’t want to remove my ovaries because I don’t want to go on Hormone Replacement Therapy, because synthetic hormones make me suicidal (tried and proven twice!).

I had my little three-day pity party, and now I’m ready to formulate a new battle plan.

Friday night I hung out with my husband and our friends, and we had game night. I drank two vodka drinks that night. I got a buzz but did not get drunk. I ate a lot of chocolate covered espresso beans and cheese. I was in ’screw it’ mode with regards to my diet. I felt like nothing I do makes any difference - my body is going to continue to be diseased - so why not just live my life the way I want to, and eat the junk I want to eat?

Well, Saturday morning I found out why I can’t do that.

When I woke up, all my joints were aching, and I had a new round of pelvic pain going on, and my breasts were so tender that I wanted to cry. I knew the culprit was firstly all the caffeine and secondly, the booze. I know this because Tyler knows this I have direct experience with noting how my body reacts to caffeine and to alcohol.

However, the brain weasels were still invading en force on Saturday (yesterday).

I went to my friend for a massage (she is trained!) and had a lovely session with her. I started out wanting to cry my eyes out, and my voice was very shaky. I ended up with a lovely state of relaxation that carried me through the next five hours. Alas, the brain weasels are a strong lot.
However, as I was going out the door last night, a co-worker called and asked me if I’d like to share a hotel room with her for the next training class on July 5. I was confused as to the dates, and so she called her mom (who runs the school I work at).

Get this - I thought my next class was this coming week, but it’s not! It’s not until NEXT week! Hooray! I was soooo stressed out about getting all my homework done from the last class, and now I have another week to do it. My co-worker told me not to stress, that I actually have all summer to get my homework done. This jives with what two other co-workers have told me. But the teacher I had for this last class was telling everyone the homework was due June 21, and I was all stressed to hell that it was late already. So glad I have more time. And on top of it, now I have a room to share instead of footing the entire bill for a room myself. Commuting down to Sunnyvale had been quite a bitch last time. Getting a hotel room is much more preferable.

As I was saying, I was on my way out the door. I went with my husband and two friends to see Concrete Blonde’s 20th Anniversary Reunion concert last night (OMG it was so awesome!!), but I was still such a spaz that I felt I needed a drink. I would have taken a half a Tylenol 3 were it not for the fact that I’d left my medication in the car. So I drank to quell the brain weasels, instead. I only had one drink - Mount Gay rum with club soda and some lime. It was godawful but that’s the best the bartender could come up with outside of corn syrup-infested alternatives. I should have just had the rum neat. Ah well. It did its job in the end.

I wore a corset to the show last night, hoping it would stabilise my back, because I always get bad back pain when standing at concerts.

The corset didn’t help. So there I was, in moderate back pain by the middle of the show, and I didn’t have any meds on me, and I didn’t want to drink any more booze in case the back pain got worse, or even worse, in case the pelvic pain returned.

On the drive home from the concert, my mid back began to spasm. I laughed hysterically and kept saying, “at least it’s not pelvic pain, this is actually manageable!” I tore at the corset strings and ripped the thing off, and dug my hands into my back to try to work out the spasm. Things didn’t calm down until I got home and smooshed my back to a tennis ball to the wall and rolled on it to try to work the blood flow in the back.

A TMI note - I was intimate with my husband and right afterwards, the pelvic pain kicked up. I need to note this because I am clinically diagnosed with dyspaneuria, and now I’m ever aware of the cysts on my cervix thanks to the latest MRI report. There was a tiny bit of blood in the vaginal discharge after intimacy. The nerve pain began immediately - first a tiny tickle near my cervix, then fringing out slowly to a burning sensation inwards, radiating throughout my entire pelvis. I reached about a 4 on the pain scale, but I did not take meds because I’d had one rum drink earlier in the night.

Today I’m going to review the list of inflammatory foods, and resolve to cut out sugar and ALL dairy (including goat milk) from my diet. The Budwig diet however calls for yoghurt, so I dunno what to do with that, yet. Maybe I’ll make an exception and just have goat milk yoghurt in the diet and keep the restriction to no cow’s milk anything, no bottled goat milk, no cheese, etc.

The point to the new battle plan is that I want to try to stave the growth of the endometrioma on my left ovary.

Wish me luck. The last time I cut sugar out of my diet, I had an emotional meltdown from the withdrawals.

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.

I began spotting yesterday at work but ignored it as much as I could. I got through the workday without being in pain. I was actually too hungover to be in pain because I’d gone out for tiki drinks the night before and went overboard again. I slogged through the day as best I could. Working with children doesn’t allow you to take it easy in the least. I still had to run across a playground to get to fighting children before bodily harm could take place. I still had to leap over things in the classroom to get to hurt or frightened children quickly. Some young children just spontaneously erupt into tears before lunchtime - they have such a long day and just can’t take it sometimes.

When I got home from work, my endorphins from work were still going, but I was happy to sit and just zone out on the Internet for a bit. My husband got home from work and we proceeded to get ready to go out to dinner. Suddenly my energy dropped to zero and I thought I might have to go to bed right then and there, but I pushed on.
We had a tasty sushi dinner (yay payday!) and went to see friends for game night. Throughout dinner and game though, I sighed or yawned and was generally not completely there. I wanted to be, but my body just refused to cooperate.

I went to bed as soon as we got home from our friends’ house - just before midnight.

I woke early this morning in pain and confirmed that yes indeed everything was officially flowing and ramping up. Tried to go back to sleep but tossed and turned. Finally got up around 8:30am. Finally gave in to the pain around 10:30am and took a Tylenol 3.
It’s after 11am and I am envious that my hubby is still sleeping in like any sane person would do on a Saturday morning.

I already feel trapped. It’s a sunny beautiful day outside - supposed to be a lovely 70°F, and I can’t enjoy it without the pain and the pain goggles. Vision really does look muted because of chronic pain. It’s totally not crisp and vivid. Even when one is not on pain medication, the world through the eyes of someone in really bad pain is a bit matte and fuzzy, if not surreal, and it sucks.

I’m bitterly jealous that I don’t get a weekend mini-vacation before having to return to work on Monday.
Maybe my hubby will have a cunning plan for us today - we’ll see. I certainly can’t go anywhere on my own. I can barely decide what to feed myself when in this painful state.

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.

WTF!!! I thought mittelschmerz was supposed to last UP TO 48 hours! We’re at 96 hours of worsening pain!

It started on Tuesday. The pain was centered low in the uterus. That makes sense since the endo that was left behind at time of surgery is on the bottom of the uterus where it meets the bladder. The pain was mild but annoying, as it usually is during ovulation.

On Wednesday, the mild pain ramped up by afternoon to moderate and very annoying. I devloped low back pain and was very tired. At work, it hurt to pick up the baby. However, I did not take any pain medication. I wanted the pain meds but I kept putting it off, because I wanted to drink wine with my friends later that night.

For pain management, I began doing the pelvic exercises and slow stretching throughout the day.

However, I got so mad at my body for putting me in moderate pain. I got into that “nothing I do will ever stop the pain and the progression of this illness” mentality again.
So when I was with my friends Wednesday night, I drank not one but four glasses of wine.

On Thursday, the moderate pain continued, same as it was on Wednesday. I wanted pain meds but again I kept putting it off, because I get tired of all the pain pills I have to take. I wonder what hurts my body more, 23 years of taking up to 1,200mg ibuprofen a couple times a day when the pain hits, or drinking wine? I mean, come on…
More pelvic exercises and slow stretching throughout the day.
The pain was so bad on the way home that I went into dissociation mode. My face dropped, my eyes stayed straight ahead and were out of focus, and I just … drove.
By bedtime I wanted Tylenol 3 but again I put it off, instead grabbing for my friend’s progressive relaxation tapes he loaned me.

This morning I woke up groggy, even though I went to bed a full hour or more earlier than I’d done all week. I was slow and tired. The cramps ramped up again on the way to work.
Before 8:30am I gave in and took 600mg ibuprofen.

I think the reason I fight so hard against taking meds when I’m not on my cycle is precisely BECAUSE I’m not on my cycle. It’s not time yet dammit! I shouldn’t BE this way!
So I deny myself the meds and push through it with the mentality that this will pass because I’m not on my cycle and besides, the pain is a 3 to 4 on the Mankoski pain scale.
I end up declaring to myself, “This!? This is nothing! When on my cycle, I’m at an 8 or higher!”

But this morning, I couldn’t take it any longer. This has been going on for four days!!! WTF!!!

The pain just makes me want to cry because not only has it been going on for 4 days, it’s that the pain returned just 8 days after my period ended. And the pain is just dull, looming, constant, spread out.

To describe it emotionally, it’s like the feeling a child has when they can’t get their way, and they stew for a moment, then stick out their bottom lip, then melt down. Or to place the emotions as an adult…picture it like this: you’re told after having worked 8 hours without a lunch that mandatory overtime has just gone into effect…again… and you can’t leave for another 2 hours…and this is day 4 of management doing this to you.

To physically describe the pain, it is not in my ovaries, which is what normally happens with mittelschmerz. It’s been low and centered in the bottom of my uterus where it meets the bladder. I have the low dull feel a woman might experience with a bladder infection starting. But this isn’t a bladder infection - it’s just how my endometriosis behaves.
The pain as of yesterday began spreading to my anus. It’s not shooting pain - that happens when I’m on my period.

I guess the closest I can think to describe the pain coupled with emotions again would be a hang nail or paper cut that is ever constant and enough to drive you mad - or the feeling of being constipated and not being able to have a bowel movement for 4 days or more - THAT feeling - and that alone can drive you mad.

Yes yes, I called my GYN and left a message.

It’s been 4 hours. I’m taking 600mg ibuprofen again.
I’m beat down. It’s sunny outside and I could take the baby for a walk in the steep-hilled neighborhood. I may be viewed as a slacker if I don’t take her outside for a bit, which in turn makes me feel guilty and brings up the resentment for things this family has said to me over the months regarding how my illness impacts their careers.

WELL WHAT DO YOU THINK IT DOES FOR MINE?

I was telling the mother about how some friends want me to go into business running a daycare. Her sister in law runs a daycare, so we talked shop for a few minutes. The mother then told me I’d need to make sure to hire someone who could always be there and be reliable.
I was taken aback. I replied with, “yeah I’d definitely need a co-director because of my illness”.

There is a large rant there but I don’t have time for it.

People who suffer what I suffer already know the rant because they live with such insults all the time, too.

I am reliable when my illness doesn’t claim me. I gave full disclosure at the outset, including time off monthly. They decided to hire me anyway.

Dammit, I don’t feel well.

I’m ready to cry on the job.

I don’t feel well.

1pm update: The on-call GYN called back and we discussed all the symptoms at length. She had my history and everything. I am so thankful. She said it’s likely not mittelschmerz but an endo flareup.
She said that if i am not better by Sunday, I am to call the emergency on call doc and go back in for yet another ultrasound to check for more cysts.

She addressed my fears about being flagged for using too much Tylenol 3, and authorised me to take the Tylenol 3 as needed (I can’t on the job though). She said my regular GYN would see the note in my file and would have no prob prescribing more before it’s time again, should I run out.
Instead of absent-mindedly saying ‘have a good weekend’ before hanging up, like the receptionist and everyone else does, this GYN said, “hang in there.” I nearly cried - I’ve been on the verge of tears all day but that almost did me in for sure.

Well I guess I prefer one thing following another rather than having it all at once!

TMI to follow, may be triggering…

Between January 31 and February 3, I got over the cold virus that was plaguing me. And then that allowed my body to start in with the premenstrual stuff.

Since about February 5, I have felt like I was developing a urinary tract infection, and overnight, I got a pea-sized bump on my right outer vulva. I’ve also been experiencing the worst anal shooting pains in probably ever.
It got to the point on Friday night while I was at a Taiko drumming show that I thought I’d need to leave and go directly to the emergency room. My entire abdominal region extending into my pelvic region felt bloated and inflamed, and it felt like someone was intermittently shoving what can probably be described as a splintered broomstick up my ass, plunging, then pulling it back out again. Dear gods. On several occasions, I gasped and elevated out of my chair. Same thing on the drive back home. I took medication when I got home.
The next morning, I was feeling better. The bump on my vulva even went down significantly. I had only a few moderate anal pain instances on Saturday, which can be described as someone shoving a safety pin into my anus. The pain was over much quicker.

Now, the first thing I think of when I get such pain is, what have I been eating or doing differently?
I have not had a drop of alcoholic beverage since January 1…but in the past week, I’ve added dried apricots to my diet, and I’ve been chowing down on gluten-free chocolate chip cookies out of PMS cravings. In the past week, I began drinking skullcap tea once a night before bed because it’s a calming agent (I’ve had a lot of self-induced anxiety over the past couple of weeks, centered around self-manufactured blogging deadlines).

I looked at the ingredients on the gluten-free cookies - they’re safe.

I looked up apricot allergy and found this webpage, which helped me a lot. Parts of the second paragraph really applied to me. It says, “Symptoms are more severe including generalised urticaria, abdominal pain…Individuals with apricot allergy also tend to develop adverse reactions to other fruits including peach, apple, cherry, plum, and nuts (such as hazelnut and walnut).”
Fascinating…I cannot eat the skin of apples or peaches without feeling like my intestines and asshole are being ripped apart. Now I know it’s all tied as an allergy. I don’t normally eat cherries or plums, so I can’t comment on whether I have a reaction to those. I haven’t paid attention to whether I have a similar reaction when I eat hazelnuts and walnuts, so now I can pay attention to that.

I looked up skullcap, and while I found that it won’t give me any abdominal or intestinal side effects, the webpage I found did go a long way in explaining why my anxiety was increasing rather than decreasing. I’ve been using the max dosage for my tea (30 drops of tincture) instead of the minimum (15 drops). So I’ll scale back on that and see if I notice any results.

With my thoughts on the apricots, on Friday, I phoned up my allergist and requested to go forward with the endoscopy that he wanted me to do last year. He wanted me to do this because he felt the blood test for celiac was not enough to go on, and he wanted a better test to rule out celiac. He really thinks I have it. I have not wanted to do the endoscopy out of fear, but now I feel that it is time I do this, to get definitive diagnoses ruled in or out. I spoke with the nurses there and they told me that peaches were tested for but not apricots, and the peach panel turned out negative for allergies. The doctor is to call me back this week and we’ll go over what all needs to be done in preparation for an accurate endoscopy reading.

In keeping with my ever-expanding goals for 2009, I am also trying to locate a rheumatologist so I can get my osteoarthritis looked at again, and rule out whether it’s rheumatoid arthritis or just osteoarthritis. This could be an important distinction, because of the fact that I have other immunological problems (endometriosis, allergies, spontaneous onset of acute pancreatitis at age 21).
I would also like to know definitively whether osteoarthritis is also considered an immunological disease like rheumatoid arthritis is.

I have osteoarthritis in my cervical spine, with bulging discs at C5 and C6. I thought this was from the car accident in 1994 but it may be that I’ve had degeneration since childhood. I definitely have osteoarthritis in my knees for example, and I had to have doctors notes exusing me from certain activities in gym class all my life. It’s possible that the car accident severely exacerbated the osteoarthritis and that’s why I now have bulging discs.

I also recently found out that I have osteoarthritis in my thoracic spine! I was looking back through all of my medical reports through the years and found a report from my chiropractor. In that report, it is noted that I have a diagnosis of Hyperlordosis and mild levoscoliosis, or curvature of the spine. Okay, I’ve known this since I was about 12 years old, and my family never had the money to fix it. And several of my aunts, as well as my maternal grandma also have/had this.

But the real kicker of this report was what I found at the bottom of the report: I also have osteoarthritis in the thoracic spince, from T6 - T8. I don’t recall this ever being properly explained to me. I’ve always focused on my neck injury. This totally explains the out-of-alignment bump on the spine that I have in my mid-back, which my husband likes to play with, because he finds it so weird-feeling. ;)

Now I wonder, did having this out-of-whack thoracic vertebrae CAUSE my acute pancreatitis when I was 21 years old? Hmmmm.

Anyway, to wrap up, the more immediate issue had been the abdominal/pelvic/anal inflamation and pain. I’ve not eaten any apricots since Friday, and the pain hasn’t been a problem at all today. Hopefully my system will get back on track in the anal region before the pain really sets in within the pelvic region by Saturday.

With all the pain in the past week, I was really depressed. The depression was already setting in the week prior - it’s my annual winter blahs, which always hit pretty badly by February. The pain just made the depression REALLY BAD for a few days. I hope I’m coming out of it, cuz I really need to be emotionally strong in the next week to be able to battle the endometriosis pain - and the fact that I’ll be bedridden for days again.

Happy New Year!

Today we slept in til 11:30am, got up, ate smoked salmon w/ cream cheese (B had his w/ baguette, I had mine w/ rice crackers), drank mimosas and also had some Peerless pumpkin spice coffee, and we watched Gonzo.

This year, I will:

• Become more of an advocate for Endometriosis awareness and humane treatment for those of us who suffer from it
• Put my life’s worth (1985 - present day) of diary entries about my chronic Endometriosis-related pain all in one place publicly on the Internet
• Travel to the U.K. for the first time
• Buy my first ever kitchen table
• Finally stop consuming alcoholic beverages because I know it will kill me based upon the medical condition that I have, and it’s time I started loving my innards every minute of every day instead of cursing myself for an illness I was born with
• Learn and practice yoga
• Live my first year of many decades under the new title of WIFE to my superhero
• Re-read every book I have on Tibetan Buddhism, and seek out more, because that more than any other belief system still really speaks to me 14 years after I found it
• Begin pardoning people who have incurred my wrath in years past (I’m not talking about small tiffs here, I’m talking full on silent treatment for years or decades)
• Generally start to practice true forgiveness on a grand scale

And I’d also like to quote my friend. This is second-hand as I do not recall the words as they were spoken last night, but Damion says that Chase said something last night that is so full of awesome, that I shall put it as my signature file in email…

“Let’s not hope for a better year, let’s MAKE a better year.” - Chase Worthington

Love and hugs and all that mushy crap,
steph

Overall, I had a nice weekend!

Friday in particular was great, because I got a lot of good news that day.

I was told that the company that fired me will settle for the last dollar figure I threw at them, PLUS they will revamp their disability training, PLUS they will remove the ‘fired’ status from my record and call it a ‘voluntary quit’, PLUS they will give a good review for me if employers call for reference check.
HOLY CRAP THOSE THINGS ARE THE VERY LAST THINGS I EVER EXPECTED TO COME OUT OF THAT COMPANY. This excites me to no end to know that they will restructure how they treat disabled people.
I can’t help but wonder if fellow coworkers finally found the bravery to step forward and also complained about how they were being treated.

On Friday, I was able to get a wagon and a boombox on loaner from a friend to use on the AIDS Walk, which I participate in every year.
Also on Friday, I went and did what I threatened to do - go looking for a wheelchair. I posted on freecycle.org looking for a wheelchair - someone actually had one right here on the island! I went and picked it up - it fits in the trunk of my car! I nearly cried, I was so relieved at having found a wheelchair, that it was free, that it was local, and that it fits in my trunk. I had no idea the amount of stress that would be lifted from me in just knowing I have a wheelchair handy in case I’m too debilitated at any event now or in the future. It’s not admitting defeat to my illness - it’s being prepared. *big happy sigh* I just didn’t know what a weight that would lift. I’m so happy.

We spent all of Saturday running around town, preparing for the AIDS Walk and a friend’s birthday party. And then we stopped in at the local German restaurant to see a friend who was celebrating her graduation from massage school. It was a coincidental delight to also see my other friend’s friend playing there that night - his band is called the Frisky Frolics.

We got home with sore feet last night and wondered if we’d be up for the AIDS Walk, after having such a long exhaustive Saturday running all over town. Our feet already hurt from that alone.

But we did it - we got up bright and early this morning and packed up my car with the wagon and a portable ipod speaker system that we got (we decided that would work better than the old boombox, and we can use the ipod thingy for the wedding, too), and we drove off to San Francisco for the AIDS Walk.

We met up with our friends - there were only six of us this year but we still got recognition from some of the other walkers who see us there every year, and we got compliments on our team shirts as usual. :)

I have blisters on my pinky toes after completing the 10km walk, but otherwise my feet and other toes survived just fine, as did my calves. All that walking the baby around town for my job has really paid off!

I had mild cramps on and off today - mostly when I *wasn’t* walking, but taking a rest. George showed up when I got home and went to a friend’s birthday BBQ party. I have been premedicating with Motrin so when the cramps did finally hit this evening, it’s been mild overall.

Oh! One last thing! This weekend I went to two different places where alcohol was present, and I did NOT take a full drink. I had nothing to drink last night, and today I only had a couple sips of peoples’ homemade vodkas, just to see what each tasted like. Never even came near catching a buzz. Even in the highly charged social situation where I ran into two unexpected people who at one time hurt me (one much worse than the other), I was not driven to drink. I am very proud of myself for this.

Now if I can just get through the wedding and dealing with family without needing to get drunk. Shit, THEY’LL be drunk, they’re promising it. They’ve said it’s not a wedding if people (themselves) aren’t trashed. Emotional cycles with certain people take longer to change than with others.