I Will Not Suffer In Silence

My husband had woken me up about two hours after my last journal entry, to say he was going to take off to game night, unless I needed him to stay with me. I pleaded with him to stay. He said he would, but that he just didn’t know what to do if I was going to spend the rest of the day sleeping.
I told him that made me feel guilty - that he should just go to game, then.

It was clear he didn’t want to leave me alone, but he didn’t want to not be with his friends. It took me about 20 minutes or so to rouse myself out of my pain and pain medication stupor, but I told him “why don’t I just go with you to game, then?”

He liked that idea.

We collected my heating pads, my meds, the laptop in case I wanted to blog or attempt any homework, and two books; one for school and one for pleasure.

We got to our friend’s house and to my dismay, it smelled like smoke. I have a smoke allergy/chemical sensitivity. I was grouchy at my friend C - “WHY DID YOU SMOKE IN YOUR HOUSE.”
C replied, “Yeah but that was hours ago.”

I resigned to my fate - I was stuck here. My husband was already setting up the kitchen table for game night.

I was told where I could make myself comfortable, and I was told that a friend J, who lives in that house, was downstairs with a burst ovarian cyst. I didn’t want to disturb her unless I heard her crying out in pain, so I stayed upstairs in my own little world of pain.

I tried to heat up my heating pads, only to be reminded that they do not have a microwave in that house. I was directed to a big heating pad and was allowed to use that.

The offending smoker friend also helped set me up on his wireless network, but the moment I was set up, I was suddenly exhausted again and so I put the laptop away. I couldn’t even keep my eyes open long enough to hold conversation with anyone, watch TV, or read a book.

A third friend, also named J, who lives in that house, was also not feeling well. He sat in the living room on his laptop the entire night. He’s had spinal cord injury and had surgery after surgery to cauterise nerves. He thinks nerves are growing back or something, and is in a lot of pain again. I gave him one of my Tylenol 3 because he did not have any Norco on him.

At one point, around 8pm, the stabbing right side ovarian pain returned. I ended up on the floor, moaning in pain, rocking to and fro, with the heating pad. I was on all fours, then on my back, and then I settled into an arm chair w/ ottoman for the rest of the night. Their crazy cat October decided to be nice for once, and curled up on my tummy and purred all night. I was told she only likes women, and likes women best when they are in pain - that is the ONLY time that cat is nice.
Crazy cat.

So, the pain I had on Sunday lasted through until after 10pm, despite the fact that the bleeding had subsided again. My abs and ribs still felt bruised all that day.

I got home, showered, changed into my bedclothes, and went to bed.

Woke up Monday morning pain-free and got ready for my first day back to work. I was still spotting a little. I decided to try riding my bike to work, but as I went out the door to go to work, the pain set back in, and so I abandoned the bicycling idea and drove the measly one mile to work, instead. Glad I did. I needed my energy at work to move stuff around and help set up for the new school year.
I required a total of 800mg Advil to get through the day.

Got home and was very tired, but went on to my psychology appointment. I’m seeing a shrink again ever since I had a major depressive episode at the end of July. I’m still trying to figure out if it was JUST all the stress I have been under from school and finances, or if the Cannabidiol I tried for pain management set off an even worse episode of pre-existing stress and depression.
I evened out by August 18, but that was three weeks of pure hell from one menstrual cycle right up into this next menstrual cycle, which started on August 19. I am still on anti-anxiety meds (ativan).

I spent the rest of Monday evening hanging out with my husband, making and eating dinner, and watching TV. No homework got done on Monday.

Today is a new day - I start the clock so to speak - I have 21 days til next bedridden. Today I will go to work (not sure if driving or biking yet - it’s supposed to be in the 90s today so I guess biking would be better on the ozone), and when I get home, I will force myself to do some more homework.

In about 8 days, I will have Mittelschmerz - so the middle of next week - the first week the children are back to school. Hopefully it will go easy on me while I navigate my first week in the classroom.

One last thing - about last week sometime, I developed a cough again. So this is the second virus / cough since July 18 that I have caught. And now I’m going to enter a new school year with preschoolers. I expect to be sick continually in one form or another until December. I am pounding Vitamin C and Zinc and all the rest of my supplements, and will be back in the gym by no later than Thursday this week, once the heat wave cools down. Today is Day 2 of the first heat wave of the Northern California Summer.

The pain and bleeding stopped overnight, so this morning I got up, made breakfast with my husband, ate, got dressed, and went to the weekly Alexander Technique pain management class today at the dispensary.

While in class, we are told to stand up, sit down, stand up again, sit down, etc. We are showed how to move our body in more natural alignment, rather than moving always in protective or preemptive mode because of the pain.

I had just sat back down, and I felt a trickle. I’d been in class for about 15 or 20 minutes at this point. I did not get up and rush to take any medication, however, because the instructor hates pills and the whole purpose of this class is to show us how to move in ways that lessen the pain. So I sat there, and the pain began to ramp up.

And well, I was sobbing within 10 minutes of the trickle.

No position the instructor could put me in would help. I laid on my back, and the instructor showed the whole class - they all (there were six of us plus the instructor today) had to lay on their backs.
What is interesting is that everything he was showing them, I was already doing on my own; open up the shoulders. Open up the pelvis. Put both legs down on the ground. Make the back touch the ground fully. Release those muscles.

The tears streamed down my face when the next pain flare hit. The instructor came over to me again and tried to help me by taking my left leg, bending it, and pushing it up towards my chest, very slowly. I told him that hurt a lot in the pelvic region. He then showed me how to put my right leg up, left leg back down, and roll over onto my left side. Then he had me get to all fours, then bring the left leg forward to use to push myself upright. I wailed and tears flew, and he helped pull me gently to my feet and let me sit in a chair for the rest of the session.

After the class, he said it is rare to have someone in that much pain coming to his class. I told him I’d been bedridden this weekend, and knew that today would be a respite for a few hours before the next pain wave hit. He told me ‘ahh so you took a chance’. He told me I was brave. He thanked me for coming out despite the pain, and said he hoped to see me again next week.
I thanked him for being nice and caring and helpful.

I got outside to my car and called my husband, but he was not answering his phone. I assumed he either left the house without his phone or was in the shower. Either way, though, it made me upset, because I needed him.

I stood there for a few minutes, gathering myself, and then slowly got into my car and slowly drove myself home. I experienced the usual burning sensation of pain in the pelvis, and occasional stabbing pain which made me grit my teeth all the way home. I sat hunched and to the right side because of the pain. Every time I tried to lean back in my chair and open up my shoulders and chest and straighten up, the pain was worse.

When I got within three blocks of home, my husband called me back and apologised; said he’d been in the shower. I asked him to meet me out front to help me get out of my car, and he did. He asked if the pain had come back during the class. I said yes, and he gave me a big hug.

I got in the house and was medicating with 1.5 Tylenol 3 and 600mg Advil, when the next wave of pain hit. It was knifing and in the right ovary. I nearly dropped the bottle of Tylenol 3 into the sink. I clutched the bottle and the sink and sobbed. Tears poured from my eyes. My husband stood there over me to support me. He took the medication from me and steadied me. He opened up the Advil so I could take that medication.

After several minutes of sobbing, the pain eased off, and I said I needed a moment alone in the bathroom. I knew I was passing something. Sure enough, several thick, dark clots had come through. The colouration was nearly brown, the red was so dark.

After that, I got the heating pads and sat in the hard kitchen chair. My husband was close to me the whole time, hugging on me, braiding my hair, talking with me.

In all, the horrible pain lasted roughly an hour and 45 minutes.

I’m doing better now that meds kicked in and I have two heating pads on me. I am still bleeding moderately and passing clots.

I was in less pain bleeding profusely on Friday and Saturday. Today is easily the worst of the pain - I definitely hit 9 on the pain scale today.

And now the meds are taking me under. I must sleep.

Today I woke with low-grade vaginal and pelvic cramping, and the need to keep ‘checking’ to see if I’m spotting, yet. I can’t handle the continual need to ‘check’, so I threw on a pad. But every time I go to the bathroom, I’m still ‘checking’. I swear, it’s either obsessive compulsive behaviour or it’s some instinctual female thing. Either way, it’s annoying as hell.

I set out to run my errands, but did not bicycle. I drove my car, instead. I’m too fatigued and the low-grade pelvic discomfort is making me whiney. While driving, I had to have one hand on my inner knee, firmly holding the acupressure point, to try to settle the cramps down.

I also began having hypoglycemic attacks starting on Saturday. I usually get hypoglycemic pretty easily right before my period. Waking up hypoglycemic, and having it made worse by drinking red raspberry tea, was also quite annoying.

George is due on Thursday, but at this rate, I say he’ll be here by Tuesday night.

I have this huge amount of info to share, but I’m not sure yet if it can be related to this journal and this health condition or not, so I’m leaving it off this journal for now. You can read all about it over at my other journal, though. Once I determine its relevancy to this journal, I’ll port the entries over, just like I did before…in order to create this blog.

2:07pm Edit: WTF is it with my bowels today? This is the third dump I’ve had to take. This is WAY out of the norm for me, since by nature I’m a constipated pain in the ass.
Is the endo break-dancing on my bowels or something? Is it my stress level because I’m STILL trying to finish all the homework I got from the teacher training summer intensive? What the hell, man…

Today the pain and bleeding have subsided. I have only had minor pain with the occasional stabbing in both ovaries and the uterus. I’m still constipated. I have not had any pain meds yet today.

I’m still sick with a cough and chest congestion. I have not taken any cough syrup for it yet today, because it has codeine in it, which is constipating. I’m just coughing the junk up. Maybe tonight I’ll take more cough syrup.

Today I had an appointment with the pain management shrink, so I checked our financial status to see where I should pull money for the co-pay and parking fees. This is when I got a huge shock; apparently the school decided to deposit two checks at the same time after having held onto them for a couple of weeks. Apparently I had budgeted the money, assumed the checks were cashed, and continued spending money from the account without looking. This is something I always do. I have created lists and lists. I have printed my account balances out. I have tried spreadsheets and checkbook registers….and STILL I do not keep a tight enough mental handle on my money. STILL it flies out the door unchecked.
This time around, I even went so far as to print out the bank statements nearly every week and set it on my husband’s desk so he could provide the ‘checks and balances’ - the oversight - in case I had failed.

Well, he didn’t look at the balances too closely, or didn’t care. Worse, he didn’t keep the printouts with my side margin maths. He thinks he just glanced at the stuff and threw it away. There goes the oversight!

So we are in the hole - the joint account is completely drained, with bouncing checks and overdraft fees. My personal bank account has less than $300 in it (I need at least $300 in order to not be fined each month for falling below balance).

And there’s my credit cards - both are maxed out; one is at $2K and the other is at $6K. Most of that damage happened in May, 2009 for the honeymoon, and the cards were finished off in May, 2010 when we went to Michigan. Payments on those cards are due in the next week.

So now I owe my own husband over $1,000, and I still owe my employer at least $100 for a hotel stay during summer school, and I still owe the training school $325 for the last class I took.

Then there’s the medical bills - I owe hundreds of dollars in co-pays for the MRI, the ultrasound and the Emergency Room visit I had because of a co-worker wearing Chanel perfume to work - who knew I’d go nearly anaphylactic?

The school costs and the credit cards are due ASAP. The medical bills can wait.

I have ongoing appointments with all kinds of medical professionals - acupuncture, the head of pain management, the pain management shrink, and massage. I can no longer afford any of this unless my husband hands me the cash on the spot.

I’m going to make yet another list for him tonight, because he said he will crunch numbers and see what he can offer me.
He’s already paying all of the rent, most of the groceries, and all of the bills. *sigh*

I am not scheduled to return to work til the end of August. I have so much homework that I NEED that time off, anyway.

The financial mess I’ve gotten us into has wrecked me emotionally. I thought I’d planned well enough to avoid this, and yet here we are. I cried at the pain management shrink today, but not about the finances. I cried about my illness necessitating all of these appointments. I skirted around the financial issue and focused on the quality of life issue. I said I just want to go back to ‘blissful ignorance’ and just stop trying to MANAGE this illness, when it just seems that there’s no managing it.
The truth is that I NEED to learn how to manage my stress and my pain, so I NEED these pain management clinics. I just think however that I can get what I NEED for FREE through the dispensaries, thanks to my Prop. 215 certification. So I’ll make out the list of services I need and see if I can get everything I need from the dispensaries, and sadly I will have to fire UCSF because it’s a huge financial drain.

In other news:
Today I am starting the kidney and liver detox diet. It lasts one month. I am not going to do the gallstone flush at the end of the month, because I do not believe it works. I do however still believe in the detox itself. Here are the details:

DETOX WEEK 1

Night before first day - Make kidney tea.
1 Tbs. Tea mix into 1 cup cold water in non-metal pot (enamel or glass)
Heat to boiling point (do not boil) and then turn down to simmer for 20 minutes. Leave out overnight. Can be made a few days at a time, extra to be refrigerated.
Warm (do not boil) before drinking.

Breakfast: (or at any time of day) Kidney Tea: Strain tea. Warm and drink one cup.

Supplements before meal: 2 clove capsules

Supplements with meal:
1 ginger
1 Uva Ursi

Lunch: Supplements before meal: 2 clove capsules

Supplements with meal: 1 ginger

Dinner: Supplements before meal: 2 clove capsules
7 wormwood capsules

Seven Vegetable Soup OR Parsley Tea 1 cup boiling water, steep a few tbs. chopped parsley for 3 minutes, strain & drink (or at any time of day)

Supplements with meal: 1 ginger
2 Uva Ursi

Before Bed: 3 tsp. Black walnut tincture in 1 cup of water

Make tea for following day if needed

Do not consume caffeine in any form (coffee, sodas, teas, chocolate) as it is counterproductive.

I forgot to make the tea so I’ll do that this afternoon. I forgot to take the 7 Vegetable Soup out of the freezer, so I just did that now and it should be ready for me by tomorrow night.

The CBD strain that I tried in pill form yesterday was roughly 172mg worth of cannabinoid flower trim and organic sesame oil, purchased from the local dispensary. I had split the pill - originally it was 343mg in a ‘00′ capsule. I used two ‘0′ size veggie capsules I have at home to divide up the contents of the ‘00′ capsule. I then consumed one of the ‘0′ sized capsules.

Originally, it did not provide a high, and did provide moderate and acceptable dissociation from the pain. Only after I moved around did the pain come through. I waited a total of two hours before taking half a Tylenol 3 and 600mg Ibuprofen gel-caps. When those drugs kicked in, I took a two hour nap.

When I woke, I was in pain again. This was now four hours after ingesting the ‘0′ size cannabidiol capsule, and two hours after ingesting the half Tylenol 3 pill and ibuprofen.

It is only after I took the second half of a Tylenol 3 pill that the cannabis high set in and kicked my ass.

From around 4:30pm until well after 10pm, I was high on cannabis, fascilitated by the Tylenol 3. I can tell you right now that if I were not in pain, and consumed this stuff with my husband, there’d likely be a 5-hour sex marathon or a tactile fundome of sorts. This can be some really nice stuff.

Unfortunately, I no longer do drugs recreationally, my husband has never done drugs, and most importantly, the one thing I was promised from this strain was spasm and pain relief, and I did not get that. Again.

Then there’s the other thing that always happens to me with cannabis; my muscles went rigid throughout my body. I had to continually tell myself that I was already laying down, and there was no need for my legs to be trying to elevate above the blankets. I had to keep trying to relax each muscle group, but they’d tense right back up again, as though I was in a constant state of trying to get up off the bed. I hope I’m explaining it well enough. The muscles were inflated.

Then there was the breathing issue; I was so high that I was breathing very shallow. I had to keep telling myself to breathe evenly and deeply.

I got out of bed long enough to eat dinner with my husband and watch some Invader Zim. I was so high that I could catch the verbal sounds in the background noises and music, and pointed it out to my amused husband, who of course said he’d never heard it before. Of course not, we’re usually sober, heh.

I went to bed for the night around 10pm, but I woke periodically through the night and for sure I was still high. So in all, my unwanted drug trip lasted as long as the other cannabis experiments have - well over 6 hours.

The next step is to try the experiment again without Tylenol 3 - but not this month - I’m not ready for it.

Next time, I will consume an entire ‘00′ capsule, since the ‘0′ did not lock out the pain sufficiently enough for me.

If the pain still leaks through, it will be a miserable day indeed, which is why I am not looking forward to the next experiment. But this falls into the ‘you won’t know til you try it’ category, so I once again have something to PROVE to myself and others, as opposed to letting fear and loathing make the decision for me.

If the second experiment with the CBD strain in edible form does not help, I will either call it quits or try smoking it (I have some dry leaf CBD). I’ll have to make that decision later.

I just want to be able to say I’ve tried every route available.

In the meantime, my next appointment with the pain management psychologist is this Thursday.

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.

The pain hit while I was watching and photographing other people’s presentations. I am the class photographer, so I felt I could not rest. I did stretches when I could. I did wide hip circles when I could. I ingested 600mg Advil gel-caps.

During the first presentation right after lunch, I was standing and photographing when I got dizzy. I regrouped. Then a few minutes later, my knees buckled. I steadied myself and lowered myself to the ground. My classmate, who also has endometriosis, was sitting on the floor nearby and rushed over to me, asking if I was alright. I told her I’d almost fallen and she said, “I know, I was ready to spot you.”
That’s when I finally acknowledged to myself, “yes, I really am in bad shape, and now other people can tell.” My face went red with embarrassment, even though no one was looking at me because I was in the back of the group watching the presentation. My classmate took my camera and told me she’d continue photographing for me.

The presentation finished, and that’s when one of the people in my presentation group came up to me and said she was leaving. She suffers from chronic migraines, and she also got her period this week, which has been the worst pain she’s been in, in a long time. She was on day three of killer cramps. I looked up at her all wrapped up in blankies and heating pads, with her sunglasses on because indoor lighting was too bright for her. I said, “I’m right behind you, I might go, too.”

Next thing I know, our team is being called to present the next lesson. I thought I had at least one more presentation before our group, so I called out to a member of my group, saying I was not ready, I need more time. Team member 1 went home already. Team member 2 came to me and asked if I was in pain, I told her yes. She told me that she and Team member 3 would go on without me and Team member 1, and that it is okay, they understand, and they will be fine up there together. I pleaded with her to ask for more time. She told me really, it’s OKAY, and gave me a genuine look that said, “just stay there, rest, it’s okay.”

I burst into tears.

The guilt! The failure! All that preparation! Would I get an incomplete? We abandoned our team mates!

Now other classmates were looking at me. Ugh. I slowly got up, knees still buckling, and staggered into the kitchen to cry alone.
And cry alone I did. I sobbed silently and sniffled a lot. I needed my medication but it was in the other room. I was not comfortable sitting or standing, and I did not want to lay down on the floor. I settled into a cafeteria chair.
I felt trapped. My legs were not working right. Everyone was watching the presentation. My endo buddy was photographing for me. I was alone. I was embarrassed for losing my cool and crying like this. I cried and cried.

When at last I felt I could compose myself, I slowly rose from the chair, and walked slowly out of the kitchen, through the presentation room, where another presentation was going on, and made my way to the public restroom.

After all that pain and suffering, I had nothing to show for it. No bleeding has started, yet.

This has happened to me often enough, but it never fails to make me that much more pissed off at my body. If I’m going to have that much pain, why can’t I already be on my period? Why do I have to have all that pain before my period, then go through the period on such continued pain?

It’s not fair!!!

I emerged from the restroom and went to the classroom, where I was finally able to take a half of a tylenol 3. I sat at my desk and cried some more. Eventually I slowly walked back out and watched the last presentation, then slowly helped my teammates clean up our presentation area, and rejoined the class for the closing presentations/goodbyes. One presentation entailed lighted candles to represent the constellations, while some smoopy song played which talked about how bright we are. I cried AGAIN.

OMG CAN THE PREMENSTRUAL HORMONES PLEASE STOP ALREADY!

I think my problem is that I have been stuck with these women for six weeks. Their pheremones have invaded and disrupted my hormonal system. Even worse, this week I had the migraine/cramp lady sitting on one side of me, and a heavily pregnant woman sitting on the other side of me!

Don’t TELL me that didn’t have anything to do with my pain and emotional state! Women’s bodies are creepy.

After class, a lot of classmates were concerned about me or morbidly curious, and i had to answer the same question probably 10 times. I’d even visually disturbed a male classmate, who said he would pray for my pain to ease up. I got teary eyed AGAIN and thanked him.

SOMEONE OR SOMETHING PLEASE KILL ME. Make it quick.

My endo buddy lugged all my coursework and backpack and shoulder bag down the flight of stairs after school, went and fetched my car, and loaded everything into the car for me.

I stopped off for take-away dinner on the way back to the motel, and now here i am, typing out my saga to you, with puffy, stinging eyes. I’m ready for a bath and bed, and it’s only 8pm.

This is the second bad pain day this week - Tuesday was also bad. Today was much worse than Tuesday. The shooting pains made me yelp out, and when the pain finally got so bad, it was an 8 on the pain scale.

Oh and the cold I’m fighting is also settling into my lungs. I’ll keep you posted on that, too.

Please, honestly, something - just quickly put me out of my misery. I’m so done with this. It’s not fair. I’m mad. I’m upset. I’m tired of this. It’s just not fair.

Saturday, July 3, 2010 - Woke up at 4 on the scale, ate breakfast w/ coffee. The bleeding resumed - I hit a 6 on the pain scale.

Sunday, July 4, 2010 - Pelvic pain if I was standing - I spent most of the morning sitting and watching the town parade. Tried hula hooping in the afternoon - which set off more pain - about a 4 on the scale. Better by evening but I was quite fatigued.

Monday, July 5, 2010 - Begin teacher training class, which is an hour and ten minutes commute. I had to be up at 5:30am. Ugh. Got about 4-5 hours of sleep. VERY fatigued all day. Light spotting. Rented a hotel room with a classmate to avoid the hour-plus commute to and from school all week.

Tuesday, July 6, 2010 - Already under a lot of stress from the class and homework expectations. I was told upon enrolling months ago that I’d have all summer to get my coursework done. Now I’m being told everything for each class is due within 7 days of each class!!

Wednesday, July 7, 2010 - Students are having emotional breakdowns. I’m near breaking point. Pelvic pain kicking back up again as a result. Came home late Wednesday night.

Today, July 8, 2010 - I took the day off school to go to my first pain management clinic as prescribed by my GYN Dr. Giudice, and the pain mgmt program director, Dr. Thoha Pham. Good thing, too, cuz the pelvic pain is still with me, today. Yesterday and today it’s kicked up to about a 4 on the scale.
The person I saw today is a pain management psychologist. Her name is Dr. Katherine Bowman, and she’s going to teach me to be more disciplined in progressive relaxation, as well as introduce me to mindful meditation. My next appointment with her is July 29th, and she wants to see me every two weeks.

This evening, I have acupuncture, and I will talk to my practitioner about the herbal remedy (discontinuing it again because THREE fingers broke out completely from top to bottom, cracked open, bled, and shed skin for an entire week - started within 24 hours of ingesting the tea), and I will see if it’s possible to see her weekly.

My next appointment with the pain management program director is August 4th - to just check in and see how things are going. I’ve had quite a bit of confusion as to some Dr. Priscilla Abercrombie in the Women’s Health bulding - I thought my GYN wanted me to see her, but no one has been sure if I’m supposed to or not? So I’ll get that sussed out with Dr. Pham.

SO many doctors! Ugh. It is a sad commentary that I actually feel at home and comfortable in the presence of doctors and specialists. :(
And at the same time, the guy in the parking garage today asked me why I come around so much, and I told him I have an autoimmune illness that causes a lot of pain, so I’m on the medical campus a couple times a month. He looked me up and down and said, “You look like happy sunshine to me - not sick!” I beamed back at him and thanked him, and said I could be a full time invalid and patient, or I can live life when I can, and I choose to live life when I can. He smiled big and praised me. :)

For lunch today, I bicycled to pick up Thai food. It was a one mile trip on the bicycle, and now my knees are killing and my entire body is fatigued and feels like lead. This makes me mad at my body. It makes me feel like any exercise I do will always lead to more pain. I feel like I can’t win.

And yet, every single time, I get back up on that bike. I get back out of the house and go out somewhere. I keep fighting. It’s so weird. I get so mad, so frustrated, want to give up, but I can’t. Something just won’t let me. I’m off to do laundry, now. The laundry basket with all the dirty clothes weighs 24.4 lbs (11kg). I note this because I can carry it - normally. We’ll see how it goes today. Probably will be okay. Just noting how I keep getting back up on that horse, is all…one activity to the next, despite the pain.

3:40pm update: Note to self: bell peppers are in the nightshade family. You’ve had digestive problems with bell peppers for many years. It is getting worse. Now you are getting diarrhea after eating bell peppers. These are nightshades and also inflammatory foods and thus on your No Fly List.

ADHERE!

This evening, just after 6pm, the pain ceased. This happened after I took the half Tylenol 3 and after I had repositioned myself in a kneeling position over the side of the bed, instead of sitting on the bed.

The bleeding continued, although it eased up a bit. When my husband got home from work, I still told him I wasn’t up for going out tonight. I spent the evening continuing my studies for school.

By 7pm, my knees hurt from kneeling, even though I got up frequently or changed position a bit to ease the weight off the knees, and so I stopped sitting on my knees altogether. I got back on the bed to continue my reading, and stretched out my legs.

Sitting on the bed or the couch this time around does no good for my pelvic pain - it kicks it back up again. So I laid on my side until my arm and shoulder became painful, then I switched sides until the other side became painful.

By 9pm, I grew restless and stood up as I read my homework. I carried the book around, marching, stretching my leg out behind me, in front of me, one at a time. I leaned forward with my butt out and back as straight as I could. All of this stretching felt good.

The restlessness happens every month after I’ve been bedridden for a couple of days. It’s normal, of course. When the lull in bleeding and/or pain happens, the restlessness increases, and I get impatient.

I know that this is the calm before the storm. I know that The Last Gasp is coming. I know that I will be pain free with little to no bleeding for up to 24 hours before the pain and bleeding return again full force for half a day and then winks out until the next menstrual cycle. This is how it is with my period.

And so after two days of heavy pain and bleeding, here we are at that moment - the calm.

In my impatience to hurry up The Last Gasp, I stretched so much that I have the post-exercise feeling in my legs. The pelvic pain has kicked up to about a 2 on the scale.

But it seems no matter what I do, daring The Last Gasp to just get it over with already, just doesn’t work - it won’t happen on command. I swear to [insert deity here], I have in the past willingly in a dare routine, ingested corn-syrup-ladden beverages to try to provoke the pain and bleeding again, just to get it all out, done and over with. And it didn’t work.
I have jumped up and down to try to shake loose the debris inside my uterus. I have run in place. I have stretched as I did tonight. Nothing works. I’m in The Calm before the storm.

It’s SO bizzare.

George is in there, snickering at me, biding his time, and he’ll unleash The Last Gasp only on his time.

What a bastard.

And so here I remain in the Underworld. In Limbo. I’m not free to go, yet.

12:32am edit:
Around midnight, as I was telling my husband about the bizzare dream from last night, the bleeding, nausea and pain ramped up again. It had been six hours of relative calm before the next wave.

I wonder - me laying on my back around 10:30pm, bent over the side of the bed, performing fascia manipulation on my abdomen - did that help restore the flow and thus the pain and nausea?

I wonder - did the stretching I’d done earlier help to restore the flow and pain and nausea?

I wonder - me getting nervous and scared during the retelling of my bizzaro dream - did that stimulate a hormonal release and set the flow and pain back into motion, and with it, the nausea?

I wonder if it was all of the above.

I wonder if it was none of the above, and just that bastard george saying It’s Time…

Either way, now I have taken another half of a Tylenol 3 and 400mg Advil gel-caps.

As I wait for the meds to kick in, my stomach has started growling to let me know ooops, you took the meds on an empty stomach!

Wonderful. Please don’t let me also get a stomach ache. I’m gonna go eat something right now.

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!).