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.

Yesterday’s running thought was, “I cannot for the life of me believe that this much blood can keep coming out of me.”

The flow is usually heavy for several hours, then it dies down.

It never died down yesterday.

I turned in for the night after midnight and was still bleeding heavily and whimpering in pain and had nausea. My abdomen and stomach muscles all feel like I’ve been doing situps.

Actually, that may be true…yesterday was the first day I forced bedrest for much of the day, rather than continue sitting in the hard chair in the kitchen. Although it was easier on the pelvic pain to sit in that hard chair, I wanted badly to be under warm blankets and SLEEPING. So I forced the bedrest. Once in bed, I was restless and could not sleep for very long - due to the pain - so I kept sitting up.
Going from prone to sitting up uses the abdominal muscles. Perhaps I strained myself.

Or perhaps I’m bleeding so much that it’s “normal” for my abs to feel all bruised like this. I don’t know which scenario is true, and whether I should be concerned/scared…but the emotional truth is that I am really scared.

I woke up a few times during the night to go to the toilet, and even in the wee hours, I was still filling the bowl with blood - and also big clots. I kept saying to myself, “It’s never this heavy for this long. What is wrong?”

Both my gynecologist office and my local doctor herself called me back yesterday to tell me that all this bleeding is NOT caused by the endometrioma on my left ovary - that the ovary itself does not produce blood - that the bleeding is caused by the shedding lining of the uterus - that it must have just been extra thick lining this month.

And yet, every woman I’ve talked to who has dealt with ovarian cysts and/or endometriomas has said that they have encountered super heavy bleeding. My online friend V said she went through FOUR pads in one hour a few days ago!!! She also has an endometrioma.

Also, Mayo Clinic, the U.S. governmental Women’s Health page, and wikipedia all tell me that abnormal bleeding can be the result of having an ovarian cyst and/or endometrioma. These sites even mention the ‘bruised ribs’ / ‘worked out abs’ feeling I am experiencing - as being ‘normal’ for one who has an ovarian cyst or endometrioma.

So my endo sisters and the Internet ease my panic and fears over all this heavy bleeding, while once again, my doctors dismiss my experience.

I woke in pain at 7am, after emotional dreams. My best friend from high school and my best friend from back in 2002 - both who left me - was morphed into one person in the dream, and she was re-establishing contact with me to introduce me to her wife and show me her toddler son. She had been uneasy about this little reunion, because she thought I’d be mad at her for coming out of the closet, since I’d had a crush on her and she’d spurned me. I just wanted everything to be okay between us again. It was very awkward and emotional.

Anyway, I got out of bed and went and stood in the kitchen eating some food so that I could take more medication without running the risk of a stomach ache. I took an entire Tylenol 3, 600mg Ibuprofen, and .5mg Ativan.

I cannot remember how much medication I consumed yesterday. I think it was a total of three Tylenol 3 pills in a 14 hour period, and 1,200mg Ibuprofen, and .5mg Ativan.

My pain yesterday never got below a 7 on the pain scale, and was often hovering near 8. I need to also note that I’ve had annoying ‘growing pain’ type pain in the left leg all throughout this cycle.

In graphic terms, it would look like this on the Allie Brosh pain scale:

But when I woke at 7am this morning, still bleeding heavily and passing big clots, I became even more scared. I kept saying to myself, “The bleeding is supposed to have tapered off by now.” This put me in the Allie Brosh pain scale graphic of:

The drugs have kicked in, so I’m going back to bed. I lose another productive morning to the pain. I hope I do not lose the entire day like I did yesterday. There’s so much homework still to be done. I return to work on Monday. I had completely hoped I would have all of my homework done by the time I returned to work. Because of my emotional meltdown at the end of July and into the first three weeks of August, and because of the endometriosis pain last cycle and this cycle, I have lost MANY DAYS of productive homework time.

I hate this illness. I hate it. HATE. IT.

At 10:40am, I bled through a super thick fabric pad, super thick fabric liner, my underwear, down to my pajama bottoms.

This has never happened before - not with the doubled up super thick pads.

Forty minutes later, I checked myself again and I’ve already bled through the second thick pad and thick liner.

I’m on the line calling my GYN now.

…dammit…voicemail again. It’s always voicemail.

Called the local doctor and also left a message.

I’m getting faster, better advice from my endo sisters on facebook! As usual!

The answer is basically, “DON’T PANIC”, and also, big shocker, the doctors are full of crap when they say increased nausea and bleeding are not due to the endometrioma or any ovarian cyst.

Thank you, sisters. I don’t know what I’d do without you.

… just made it past the hour mark without bleeding through a third pad, so I think things are settling down.

I am spotting today. I woke up fine with no low back pain or any back pain. I had no cramps. I was in the kitchen eating breakfast when the cramps and the hypoglycemia hit. This is at least Day 4 or 5 of having hypoglycemia issues. The last time I had to deal with that on a regular basis was when I was eating gluten and yeast.

Okay and sugar.

So I have to cut the sugar addiction once again. Blah.

Anyway, the low back pain is starting to set in. I did not take any ibuprofen yesterday like I said I would. Today - right now - I’m popping 400mg Ibuprofen. I’ve been wearing a panty-liner for the past two days, but now I definitely need it cuz as I said, I’ve begun spotting this morning. Super light pink.

This is of course just PERFECT, because I’m supposed to make up a missed class for Language Arts tomorrow and possibly Friday.

Great. Perhaps I’ll just go in today at lunchtime and see what all I can talk to the teacher about, and photograph, and illustrate. Yes. That sounds like a plan. Do that now before the horrific pain sets in.

Planning my entire life around the pain - that’s me.

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.

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.

Today, my own hormones are doing a number on me. I am full on with surging rage.

I was awakened by the recycling truck using its backup sirens for too long, and then idling with its rumbling engine in front of my home. Then the cramps set in - about a 4 on the scale. Then I was journaling and had another flashback to doctors who have pissed me off over the years and that just threw me into a spiral. My heart began racing and I wanted to kill the nearest thing, which happened to be my cat, who was licking plastic bags again. Don’t worry, I didn’t kill her, I just took her bag away. That cat can find any plastic bag or cover in the house. She simply walks away from one confiscated item and finds new plastic to lick. I swear, if she gets tumours, I’ll be sure it’s from all the xenoestrogens she’s licked up off of all the damned plastic bags over the years.

I ate some cereal and took 600mg Ibuprofen, but I’m still restless. Thankfully the pelvic pain has not ramped up, but the pain in general is radiating from my pelvis all the way down my legs to my ankles.
It is rare, but it has done this before. Usually the pain only goes to my knees. It is a dull ache - it feels like I have bicycled for 10+ miles. My hips, thighs, upper legs, knees, calves and ankles feel strained and swollen. My legs are restless, twitchy and painful. I’m drinking water and tea as though I’m trying to ease the dehydration - but I know that it’s not dehydration. It’s just part of what endometriosis puts me through.

I am REALLY tired. I went to bed around 11:30pm last night, but I did not sleep well all night. I kept having more strange dreams and nightmares, and I had to keep getting up to pee (welcome to having a period). The only nightmare I remember was tornado like conditions happening outside. The wind was blowing fiercely and banging things around. The sky outside was dark grey and brown, and the air was brown because of all the dust and dirt flying around. This is California, near the San Francisco Bay, so these conditions are not reality.

According to DreamMoods,

“Tornado

To see a tornado in your dream, suggests that you are experiencing some extreme emotional outbursts and temper tantrums. Is there a situation or relationship in your life that may be potentially destructive?

To dream that you are in a tornado, signifies that you are feeling overwhelmed and out of control. You will be met with a series of disappointments for the next week or so. Your plans will be filled with complications.

To see several tornadoes in your dream, represent people around you who are prone to violent outbursts and shifting mood swings. It may also symbolize a volatile situation or relationship.”

Well, I did get into it with my husband for the past two days over chemicals in the house. His hairspray (Rave) woke me from a dead sleep and rendered me disabled for half the day on Monday. And on Tuesday, he berated me after I began choking when he used the Trader Joe’s lemon scented kitchen hand soap. I thought we agreed to stop using it - I should have thrown it away. I washed my hands with the orange scented dish soap and he said, “And yet you’re okay to use that stuff.”

I read off the short list of natural ingredients to him, had him TRY to read the long list of chemicals in the lemon soap, and then put it in no uncertain terms that he can either accept that I have chemical sensitivity or we can re-evaluate our relationship, because if I have to move out, I will.
That shut him the hell up.

I then informed him that I want this household to be scent free in the next 12 months, which means his hair products especially have to go. I told him I ordered him some unscented hairspray from NationalAllergy.com, and that we’ll have to work on finding scent free hair gel and other stuff. I reordered scent free shampoo and conditioner, and I’ll have him try it out. I already have scent free liquid soap (Dr. Bronner’s) in the bathroom shower, I’m going to make sure that’s available in the kitchen dispenser as well.

*big sigh* Yeah I’m just a pretty picture, aren’t I?

Oh, and the bleeding that started off bright red yesterday? It turned into dark, sticky brown discharge, and continued on like that all day. And it went away overnight! It returned this morning, but as a shadow of itself from yesterday. I expect by the end of today, there will be actual flow happening.

In the meantime, I’m distressingly tired (also welcome to having a period), but I cannot go back to sleep because the brain weasels are in full force today. I’ve got unwanted thoughts and memories returning to my head - stuff dating back 9 or more years. It’s totally unnecessary.

I’m going to take a No-flush Niacin, get some housework done, and try to start on my homework.

If the brain noise does not abate, I’m going to take one of my husband’s xanax pills (they’re leftover from the last time we had to get on an airplane).

1pm update: The brain noise abated and I was able to take care of the clothing issue in the bedroom. That occupied me for about 4 hours. There’s just not enough room because two drawers are taken up with framed pictures that I had to put away because the wall space has to keep going away to make way for upward storage in this small place. So my clothes - clean and dirty - have been just being thrown into piles on the floor for weeks, which really irritates me.
I did get creative though, and I did purge some clothes, so it worked out…mostly. Around noon, the menstrual flow became more pronounced, and with that, the cramps began ramping up. I’m at about a 5.5 on the pain scale at the moment. I just ate some leftover pesto chicken and sweet corn so that I can take half a Tylenol 3 with some more ibuprofen.

To make a visual of it, I’m going to use the Allie Brosh Pain Scale - here’s where I’m at on her scale:

I feel like I’m being bum-rushed outta my house by Hades, and I keep pulling back, saying, “Hang on, just one more minute! I’ll be done in a minute! Wait!”

*sigh*

The sooner I acquiesce and go to the underworld, the sooner I can do my time and be done for the month.

Meh. I’m just so tired of this.

1:35pm edit: Hades took me. I’m fully in the underworld, now. OMG it hurts. :(
Six and a half on the Allie Brosh scale, Seven and a half and moving steadily towards 8 on the Mankoski scale. Inner thighs and tops of legs on fire with nerve pain that’s radiating down from the pelvis. I took a full Tylenol 3 and 400mg Ibuprofen. I’m taking another half a Tylenol 3 NOW dammit. OMG.

I’ve been going back through the past year of my endo blog in order to get as much detail as possible into MyMonthlyCycles.com, an online symptom tracking tool which will print out nifty data and charts for me to take to my new GYN. My second appointment with her is on June 23, and we’ll go over the MRI results and talk about my treatment options.

In going back through my blog, I found the following, which made me cringe:

“Because I took a new job, I can no longer make my appointment with the gynecological oncologist or my endocrinologist. I had to cancel both because they are during working hours. Of course, they do not offer weekend or evening appointments, so I will be forced to take time off work. I’m going to see if I can get the appointments on Friday, may 29 - the day after I return from our honeymoon.” - April 16, 2009

Earlier this year, I was feeling slighted by someone on the web who admonished me for not seeing a reproductive endocrinologist yet. I wrote, “I’d tried in January and again in April 2009 (last year) to see an endocrinologist. I forget why the appointments fell through.” - January 25, 2010.

When I finally did get in to see a reproductive endocrinologist (in San Francisco) in April, 2010, a friend wrote me to say, “I told you last year you should go see that doctor!”

Of course, the mail conversation we’d had about our doctors was in a shell-based email account that dreamhost was in the process of screwing me out of, and I’d lost my inbox, containing the past year’s worth of email, including the above doctor conversation.

I did see the gynecological oncologist like I said I would - I saw her in August, 2009. I don’t like her personality, her treatment of me on that visit, or her choices for me to consider, so I will not be seeing her again.

I am acknowledging that the delay of a year in getting to a reproductive endocrinologist was caused by me.

It was initially caused out of fear of losing a newly acquired job.

It was secondarily caused by me wanting to see a specialist in the East or South Bay rather than having to cross the Bay Bridge and navigate San Francisco. At this point I tried to see Dr. Adamson and then Dr. Cook, and was told by Dr. Adamson’s office that he’s only treating endometriosis patients who also want to get pregnant. I was told by Dr. Cook’s office that I have to pay out of pocket for all visits, because they’re too good to deal with insurance companies. This of course delayed me further, until I went back to my insurance book and went down the list of reproductive endocrinologists (R.E.) there, and accidentally stumbled upon the one my friend wanted me to see a year earlier.

I had been saying I didn’t know why it took so long to get in to see an R.E., so now I’m admitting it was because of myself.

Mind you, getting in to see an R.E. even a year later than stated goal is better than not getting in at all. I want people to know that even with seeing an R.E., I could continue to live with this debilitating pain for another year, five years, twenty years, etc.

People act like I’ve wasted my time and went through unnecessary pain for a year longer than I should have. People make it out like I’m some dumb hick who doesn’t know better for her own self.

The reality is that the R.E. I saw in April 2010 might not be able to help me, either.

I saw an R.E., okay?

She (Dr. Giudice) offered me gabapentin, which everyone I talk to who has taken it or who has a degree to study it (note: three friends and one biopsychologist), plus many more acquaintances on the Internet endometriosis forums who have been on the stuff…. ALL SAY it turns you into a friggin zombie. And there’s also the fact that it makes you twice than the ‘normal’ population to become suicidal. Which, I dunno if you’ve been following along at home, but I’m already diagnosed Major Depressive and I wrestle with suicidal ideation as par for the course in battling chronic pain for the last 25 years.

Dr. Giudice also talked to me about another surgery, understands that I will not undertake further hormonal treatments because I became suicidal on the last two (yasmin and loestrin), and from there she ordered an intravaginal ultrasound and an MRI to have a clearer look inside of me. She also told me point blank that my refusal to try out further hormonal treatments and my hesitancy at trying gabapentin limits the scope of what she can do for me.

Not getting to Dr. Giudice a year earlier has not shaved off a year of my life expectancy.

I am defensive because of the person back in January who gave me such shit. I am defensive because of all the doctors who continually tell me to Just Try It, despite me being right in every instance that shit won’t work out for me, because my body is so sensitive to “medications”.

I was originally mad at myself when I read my old journal entry today. Now I’m back to just being mad and frustrated in general.

Endometriosis sucks. Immune Deficiency sucks. The Industrial Revolution and Automation and the discovery of how to create Plastics and Chemicals sucks. The 20th century ruined my life. Read Silent Spring, by Rachel Carson. I’ll be glad to leave this poisoned planet when the time comes, anyway. Stupid people for killing the planet. Stupid humans.

…consisted of a bird waking me in the wee hours of the morning, leading me to close the window.

Then it got too warm in the room, so I opened the window again.

Then the bird returned and started chirping again, and I got up again and closed the window.

When I woke up, I looked up the bird call - this bird is called a Vermilion Flycatcher, and I also went outside and had a look - there’s two of them, and they’re female (because they’re brown instead of bright red like the males). This is the horrible sound they make. Just play that on repeat when you’re trying to sleep. You’ll see.

This damned bird chirped all day long on the wires connecting to our house, and on our rooftop.

Sometime around 7pm, the next door neighbor began using a power saw in his garage.
In California, many Victorian homes have the garage right underneath the house - I guess you could say where the first floor would be. Since we live next door in a split Victorian on the ground level, we are ear-level and mere feet away from the neighbor’s garage door/driveway.
The sound of the power saw drove me further insane, and I was paralysed with insanity. I laid there, flopped over the edge of the arm of the couch, trying to stay in that position in order to mitigate my pelvic pain. I began plugging my ears. Then I forced myself off the couch and into the shower.

Ahhhh, a shower. A nice, long, hot shower. It felt very good on my lower back to just stand there in the stream of hot water. After I turned off the water and was toweling off, I felt a tinge of pain and looked down to see a growing puddle of red, and more red streaking down my legs.

Expletives flew from my mouth.

Thankfully I was still standing in the shower, so I was able to just hose myself down again. I was not happy to have to soil my towel, however.

And now the pain is full on again, along with the bleeding. The low back pain is excruciating, and I’m weak as hell. To my detriment, I let the Tylenol 3 lapse, so I just took a whole pill and have to wait up to an hour for it to kick in.

I’m going to go now and arrange for a substitute teacher for tomorrow.

…and right on cue, that goddamned bird has returned at 8:30pm to keep me insane. I’ve grabbed my headphones and will likely sleep with them taped into my ears tonight.

Part of my agitation is that when I am near or on my period, I am hugely sensitive to sights, sounds and smells. I get agitated easily from sensory overload. The other part of the agitation is that being on so much Tylenol 3 makes me very cranky and moody and depressed, which further heightens the sensory agitation.

And now you know, and knowing is half the battle.