I Will Not Suffer In Silence

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. :)

I just went for a slow 1.5 mile walk with my husband! I haven’t been out of bed due to the pain in 2.5 days, so this is a HUGE accomplishment! We were talking about what to do after dinner, and my legs were restless and twitchy. I began doing slow stretches and my husband said he’d be up for a walk if I was.
It took awhile to get some street clothes on, since I’ve been in pajamas for the past two and a half days. I was winded just putting clothes on, so I felt a bit nervous about venturing out. I took my water bottle with me, and my medication.

We walked down to the beach and stood looking out at the water and the San Francisco skyline. We watched planes coming in for a landing at Oakland airport. After standing for a bit, we walked along the recreational trail just off the beach, and then cut through the shopping center to come back home again. I’m seriously exhausted, some of the pain returned on the walk and I had to take a Tylenol 3 (plus, it was time for my next dose), and my legs wanted to stop moving one in front of the other for the last half mile, but I did it!

Now I go to bed. :)

I woke Tuesday morning with no cramps! I checked to be sure my period had actually started. Well, there was bright blood, and it was within a few days of the start date, so it had to be my period, right? I got ready for work, marveling at my body. I have to admit, I had a little smile on my face. I was truly enjoying this no-pain thing.

At work Tuesday morning, I only got the slightest of cramps. As soon as I began to think, “oh no, I feel a tinge of pain, the cramps could get worse any second…” I immediately quashed that thought and replaced it with, “Oh wow, that’s SUCH a tiny pain, I am so happy I can function!” And I’d smile again. I started thinking, “This must be what it’s like to have a ‘normal’ period!”

All day Tuesday, nothing - just teeny tiny rumbles of pain every now and again. The most pain I felt was while having to rub a child’s back for naptime at work - I have to sit on the floor, and the child is on a thin nap mat on the floor. I used a pillow chair but it was still uncomfortable. So the pelvic pain did make itself known while sitting low on the floor.

You have to realise though that it wasn’t just the lack of pelvic pain through most of Tuesday - I also was not feeling the usual joint pain or the extreme fatigue that I always get with each endometriosis cycle or ‘flare’. This definitely was not starting off as one of my ‘normal’ periods. Since I have been in debilitating pain from endometriosis for about the last 24 years now, I know full well what the behaviour of my illness is. So I began to wonder if the blood wasn’t from menstruation/endometriosis at all - I wondered if it was instead from the yeast infection and having taken a Monistat treatment two nights prior, which I’d had really bad side effects to. The swelling in my labia had gone down quite a bit by Tuesday, but what if the blood meant there was internal damage from the Monistat? Every time I used the bathroom on Tuesday, I’d notice that the bleeding wasn’t getting any darker, nor was it becoming more of a flow. It was still bright red/pink, and there were long, stringy clots - also not the usual for me. Blood clots during menses for me are usually really dark red, squat and thick.

Tuesday night, when my husband got home, we went out into the pouring rain to get some groceries, so that we’d be well stocked in case I did become bedridden. While out grocery shopping, my blood sugar took a dive. I’d spent Monday and Tuesday eating and either still being hungry, or becoming hungry again within an hour of eating. That is ‘normal’ premenstrual behaviour for me, as is becoming hypoglycemic.
Eating dinner when we got home brought my blood sugar levels and thusly my mood back up again.

When I woke on Wednesday morning, I had minor cramps. Since I count the day the blood shows up as Day 1 of each menstrual cycle, I was now on Day 3, and I still was not experiencing debilitating pain. Again, I wondered if the bleeding wasn’t from the infection and/or the treatment. I wondered if I’d know if my period really did show up, and would it show up Wednesday, as originally thought?

Around 11:30am on Wednesday, the bleeding and pain began to ramp up a bit. I checked myself in the bathroom and saw that the blood had begun to darken. My legs felt funny - they were weak, especially at the top of the thighs. For me, this usually means really bad cramps are coming soon. I hadn’t had the leg pain or weakness until now, so I took this to mean that my menstrual cycle had officially hit the green light.
By 1pm when I took my lunch break, I required 600mg of Ibuprofen gel-caps, and it didn’t really help all that much. I notified the teacher I was working with that day that I was in pain and might not make it through the day. I asked if she knew what endometriosis was, and she said yes, and showed sympathy for me. She told me to sit down and take it easy. The class (I was working with the 1st and 2nd graders that day) was watching a marine life documentary, so thankfully all I had to do was sit there, or stand there as the actual case may be (sitting was too painful) for the next hour, until class was dismissed. After the first half-hour documentary, the children began to get restless, so I had them all stand up, shake their bodies, stretch way up high, and then sit back down to watch the second and last documentary on ocean life.
The stretching up high thing…I should not have done that. It spiked my cramps to a 7 on the pain scale for a few minutes. Ouch. I stretched slow, like one does in the morning when getting out of bed, yawning. But george didn’t like that.
At 3pm, I organised the children who were to be picked up by their parents and herded them out the door. After parents picked up their children, I headed to the playground to see if I’d be needed for after school daycare. Thankfully, I was not needed, and I went home.

Wednesday afternoon/evening at home, I took it easy on the couch. Around 7pm, I ate another 600mg Ibuprofen gel-caps, and slept on the couch, and for a little while I even went to the bedroom to nap. My fatigue had grown infinitely between noon and 7pm Wednesday - pain takes a lot out of a person and makes one very tired. Ibuprofen also makes one a bit tired, and I had consumed 1,200mg of it within a six hour period.

And that’s where I’ll leave it for now, cuz the next part of my story requires some background info, and this post is already too long. I’m working on making shorter journal entries from now on…

Today was my first day back to work, after having missed Monday and Tuesday.

It is my intent each month to give a “postmortem” or summary of what I went through, and my thoughts on what I went through. I don’t always remember to do this - let 2010 be the year I begin remembering this crucial type of blog entry.

The bleeding subsided by yesterday evening. Residual cramps pestered me throughout the night and into today, but it was minor enough that last night I was able to go to a friend’s house and watch the season premier of LOST, and today I was able to work a full day with minimal to moderate pain. I did have to take 400mg Advil gelcaps once today.

I cannot recall if I have laid out exactly what my job entails, so let’s do that now - I just created a page called A Work Day In The Life Of Steph.

When I got home from work, I threw off my work clothes and got into my pajamas, and tucked myself in bed with the laptop and some heating pads for the rest of the evening. I so need the extra rest.

Reflecting back on this past weekend, it was pretty scaring emotionally. If I had my way, I’d never touch marijuana again. I had gone into the weekend expecting that my new medical marijuana ‘card’ would bring some sort of good alternative treatment into my life.
Although I have misgivings about the last two times I tried marijuana (I smoked it and the pain grew worse), and although I’d read one study which showed that in vitro, “THC exerts palliative effects in cancer patients, but produces adverse effects on the endocrine and reproductive systems“, I was still hopeful that cannabis edibles could still help me relieve some of my pain.

On Saturday, while medicated on Tylenol 3 for the pain, my husband drove me to the local smoke shop, where I priced some vaporizers in case I wanted to try that route again. He then drove me to a medical marijuana dispensary, where we registered ourselves, toured the facility, and checked out some tinctures, powdered mixes and butter. That day, we bought an undetermined cannabis blend put into a peppermint mocha mix, and a blend of butter called “Kush”. A friend had told me to get a strain called Indica to treat pain, but I forgot to ask specifically for that while we were at the dispensary, and it didn’t seem that the labels on the edibles stated directly whether something had indica or not.

Saturday night, I tried the butter around 11:30pm. I only had about a teaspoon’s worth on a gluten-free waffle. It took over half an hour to kick in, and the high kicked in first, but what I remember is that for about an hour and a half I was completely pain-free. Now, this could just be as simple as my cramps abated on their own.
Or there was something to the butter. But after an hour and a half, the cramps did return, and I was still uncomfortably high from the butter, so I did not want to consume more.

On Sunday around 1pm, I tried 1tbsp medicated mocha mix to ease the pain, and mixed it with a cup of hot goat milk and 1tbsp Trader Joe’s sipping chocolate. I did not want to gulp it all down at once, because I was unsure of the dosage. The mocha mix was a single serving, but I know my body better than that, and eased way off, only digging out one of the estimated three tablespoons available in the “single serving” pack.
Again, it took too long for the medication to kick in. Once it did, the high hit me and I went on a 7 hour bad drug trip, accompanied by a pathetic pain dissociation attempt. I bled like a stuck pig all day. I experienced maddening gnawing uterine and pelvic pain, which led me to agonising choking sobs twice that day. I could not take any other pain medication for fear of getting even higher than I already was, which was very uncomfortable for me. I did not experience any pain relief until after 7pm - when I consumed 800mg of Advil gel caps.

On Monday and Tuesday, I stuck to Tylenol 3 and Advil all day and was made much more comfortable. As I stated of the Tylenol 3 on Monday, February 1, “I knew when my body was in pain, because the top of my skin would twitch, or my whole body would jump. Then it would take up to three full seconds for my brain to register that the twitch meant huge stabby pain was happening. But by the time it got to my drug addled brain, all my brain had as a message to give to me was a faint recording of a scream, if that makes sense.” The pain dissociation was full and complete compared to the medical marijuana’s lame attempts.

I looked up the word my friend had told me - indica - to find out more about it. According to Urban Dictionary, “Indica is not slang for marijuana, but one of the three species of marijuana; Sativa, Indica, and Reduralis. Sativa is more of a skinny, tall, lanky, and less yielding plant that produces a mind high. Whereas Indica is more of a small, broad, and usually a higher yielding plant that gives you a couchlock body high.”
MarijuanaStrains.com pretty much says the same thing.
I agree with my friend, I need the Indica.

I looked closely at the packaging for the medicated mocha mix and found no info whatsoever as to the blend of medical cannabis in it. LAME.
I examined the package for the butter and could only find the word ‘Kush’, so I looked that up. According to wikipedia, “Kush refers to a subset of strains of indica cannabis”. Over at MarijuanaStrains.com, they say that the Kush blend gives a cerebral high.

Alright, lesson learned. Ask more questions about what can give the best “body high” or dissociation, and make it abundantly clear that I do not want anything that is not Indica.

And then we’ll go for round 2 of medical marijuana treatment. As I said earlier, if I had my way, I’d never try medical marijuana again.
Alas, I am also sick and tired of people constantly asking me, “have you tried…?” down to the finest detail. So my answer for “have you tried medical marijuana?” is incomplete, until I can, with authority, say YES I HAVE TRIED BOTH SATIVA AND INDICA STRAINS.

In the alternative medication department, this coming Sunday, I have a phone appointment with my acupuncturist to discuss further herbal remedies for endometriosis. On Sunday January 31, I stopped taking the herbal pills she’d prescribed for me in early December, because I was upset with the side effects that were manifesting.
Throughout December, I was only taking one pill a day, when I remembered at all.
Starting mid-January, I finally started remembering to take two pills twice a day, and according to which blend I needed to be on during my menstrual cycle. This is when I began to notice the negative side effects - first I started getting manic-depressive. I attributed it to the New Moon. Then I got manic again, around the Full Moon. Instead of blaming it on the moon, this time I became consciously suspicious of the herbs.
I normally do not suffer from mania, you see. The last time I did, I was on Yasmin.
Now, here’s another problem - I told myself I would research the herbs before taking them, but then I felt pressured by my acupuncturist to start taking the pills NOW, because she wanted me to start getting better NOW.
It’s not her fault I felt pressured. I wanted to start feeling better NOW, too. So I threw aside the research I had started and just took the damned pills, hoping for pain relief.
What I got instead was manic-depression, to the point of being super hyper and anxiety-ridden to sobbing uncontrollably within the span of a few hours. And it happened on more than one day. And then my fingers started splitting open and bleeding again. I checked my diet - nothing I could think of to be causing this allergic reaction….

…except maybe the herbal pills.

So I emailed back and forth with my acupuncturist last weekend, and just stopped taking the pills altogether on January 31. She says her supplier told her that the pills are both gluten and yeast free, but something is triggering the atopic dermatitis, because my fingers cleared up perfectly within 24 hours of stopping the pills.

It’s getting too late tonight to do it, but I would love to go meticulously through the ingredients list for each brand of herbal pills - both the Unicorn Pearl and the Harmonizing The Moon - to try to root out the dermatitis. I already know the ginseng and/or the dong quai is what brought out the mania. And I find it quite interesting that those two herbs, which are touted to acupuncturists as being ‘warming’ and ‘good’ for gynecological problems, are listed as BAD elsewhere.
For example, MedicinePlus says “Avoid use of ginseng in patients with hormone sensitive conditions, such as breast cancer, uterine cancer, or endometriosis.” Also noted on that website for side effects of ginseng:
“heart palpitations, rapid heart rate, leg swelling, nausea/vomiting, or manic episodes in people with bipolar disorder”.
I’ve never been diagnosed as bipolar on my own - but I did exert bipolar tendencies when I was put on SSRIs back in 2000-2001. It is thought by later psychologists that the meds pushed me from my official Major Depression diagnosis into bipolar territory.

But the ginseng made me bipolar.

Good thing I saw a new psychiatrist today.

Regarding dong quai, MedicinePlus says, “It remains unclear if Dong quai has the same effects on the body as estrogens, if it blocks the activity of estrogens, or if it has no significant hormonal effects. It remains unclear if Dong quai is safe in individuals with hormone-sensitive conditions such as breast cancer, uterine cancer, ovarian cancer, or endometriosis.” Also noted as a dong quai side effect on that website is skin rash. Same with ginseng.

In the physiological department, I am still spotting this evening and will likely continue to do so for another day. I am constipated from consuming the Tylenol 3, and I still have moderate low back pain. I am super tired like I always am after having spent a few days writhing in pain and medicated to the gills.

Oh, and my gym membership card is ready to be picked up - I need to give the personal trainer a call and see if Monday February 8 is a good time to get together. Hopefully she can work well with me and my mobility issues, both with the osteoarthritis and with the endometriosis.

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!

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

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

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

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

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

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

Today I bicycled FOUR miles!

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

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

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

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

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

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.

I experienced pelvic pain within an hour of being intimate with my husband on Saturday. The pain was dull and continuous, but if I sat down fast or sat on a hard chair, the pain would be immediate, severe and knifing. That only lasted for a moment, then I returned to the dull continuous pain.

Saturday night, we had plans to go out dancing. Even though I was having pelvic pain, I wanted to go out, so off we went.

The pain became moderate within the first couple of songs, and spread to my lower back. And at the same time, my knees began complaining a lot. I have congenitally misaligned knees, which over time have become quite crunchy and arthritic. Normally I know before I go exercising whether I need to wear my knee braces, but this time the pain came on without warning.

Still, being the stubborn person I am, I continued dancing to songs I liked all night.Towards the end of the night, my husband was still boogyin’ on the dance floor and my body just had enough. I tried to walk gracefully off the dancefloor but staggered a bit because my knees were giving out and the pelvic pain was so bad. I felt faint. I had not drank any alcohol tonight at all. The pain had me staggering. I had to go down a set of stairs and holy crap, I thought I was gonna collapse, mostly because of the pain and weakness in my knees though.

I was able to collect everybody (there were three of us) and get us to my car. The drive home was pretty painful for both my knees and my pelvic region. And I realised that now the bulging disks in my neck were joining in the chorus. When we got home, I could barely get out of my car because my knees were so weak and painful.

My question to myself is, is all the pain I’m having stemming from the pelvic pain? Is there a full auto-immune response going on? I have arthritis in my cervical spine cuz of the bulging disks, and also in my knees which are congenitally misaligned.   That’s something for me to research, cuz right now, I gotta get myself medicated and in bed.

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.

Elliptical: 25 minutes at incline 1 and resistance 1, slow to moderate pace, and I STILL managed to pull a muscle in my left calf. 200 calories burned - I quit 5 minutes before the 30-min mark to avoid really screwing myself up.

Arm/Torso machine: 10 minutes on medium-high resistance. 50 calories burned.

Treadmill: 10 minutes at brisk walk (2.5 on the monitor), which actually helped my calf to feel better. 50 calories burned.

After the workout, I went and washed my car, which of course is upper body workout when handling the soap brush and keeping the power wash hose nozzle depressed. Wheeee!

I really need to clean the inside of my car - not that it’s too messy - it’s just that the upholstery hasn’t ever been cleaned and so it kinda smells like old lady in the car.

But first, I’m recharging with breakfast. I ran out of strawberries, apples, walnuts and almonds, so instead of my usual fruit salad, I blended up yogurt, flax seeds and flax oil, honey, cinnamon, a splash of vanilla extract, a splash of orange juice, and a splash of vanilla almond milk. I’m eating 2 fried eggs on top of two gluten-free waffles for protein.

Note to self: pay attention to how you feel after eating the eggs, as they are suspects in a plot to murder you, along with other known killers; caffeine, wheat, yeast, corn syrup, beans and cow milk.

January 6, 2009 Edit: Sorry it took so long to get back to myself regarding the eggs…what happens is I get racing heart, itchy and anxiety/panic attacks within an hour of eating straight up eggs. I can eat eggs mixed into stuff, like in gluten-free baked goods. But eggs by themselves cause a reaction. I stopped eating eggs on their own permanently sometime around November, 2008.