I Will Not Suffer In Silence

This morning my husband confirmed that he would be late to work so that he could take me to the DMV to renew my license. I hopped in the shower and made myself all pretty and off we went. We made it in time and only had to wait 15 minutes, thanks to me having made an appointment. That standing around though, first for the fee paying for the new license, and second for the photo, caused a lot of pelvic pain. There literally was nowhere to sit. I was on 1 Soma and a half a Tylenol 3 plus 400mg Advil, so I was sleepy and yet still in pain. The trapped nerve in the neck was behaving, at least.
Once I got through everything, I was told my new license will be in the mail in 2-4 weeks.

My husband had parked a few blocks away because the DMV was so packed - I overheard a woman telling someone that the Hayward DMV had closed down, that’s why the Fremont DMV, usually a quicker adventure, was now looking like Oakland (packed out the door all day long. So my husband had parked a few blocks away. I shuffled along and my husband was impatient and worrying about getting to work, so I told him to go on ahead of me. We agreed to meet at the half-way point - at the Smog Station across the street. I went in and used the restroom, and met my husband outside. We drove back home and on the way, I took another half Tylenol 3 for the pain.

The bleeding had subsided ever since my shower this morning, which I was grateful for, but of course the continuing pain let me know that more gushing will be on the way.

I got home and rested a bit, then got a burst of energy, so I tackled the pile of homework still waiting to be finished. I got five illustrations done! I hope to finish off Binder #4 tonight for my Language Arts class, and do some more work on the Rationale paper for that class. Any homework I have left to do is LONG overdue, but I will eventually finish it and hand it in, and will still receive a grade. I’ve not stopped being anxious and guilty about it but I’ve stopped freaking out over it. I come to accept the fact that I’ll still be proud of myself no matter when I turn the homework in, and that all of their threats to have people turn in homework in a 2 week turnaround were mostly empty threats poorly designed to try to motivate people through fear. Which is hilarious, considering the book Positive Discipline, which is so encouraged throughout our Teacher Practicum seminars. But who says anyone ever listens to their own advice or reason. This training center certainly doesn’t.

Around 1:50pm, I re-upped my medication and took 1 Soma and 400mg Advil. I have not needed the Tylenol 3 since this morning, because the cramps abated, and the bleeding still had not resumed.

The Soma made me sleepy, and around 3pm or so, I took a nap in my own bed. I slept for nearly two hours, and woke from some crazy dreams, which I’m sure were medication-induced. I can’t even remember them, now. I think it had to do with a classroom.
I noticed that the bleeding had resumed, but only by a tiny amount, and I was still free of cramps. The trapped nerve in the neck however was agitated again, but it wasn’t time to take meds, yet.

I made myself some late lunch just after 5:30pm, and have been on the couch ever since, just resting. I am groggy from the Soma. I am still feeling really guilty for having taken today off of work, even though I have been drugged all day and know that without the drugs, I’d be in a lot of pain. The early part of the day, I had pelvic pain despite no bleeding. So it’s still valid and it’s still reasonable that I called off for another day.

What is unreasonable for me is that my body chose to have the calm between the storm in the middle of the day, which means the Last Gasp might not happen until tomorrow. This means I stress out, wondering if I’ll have to come home sick from work tomorrow, too. FOUR DAYS! I have NEVER taken four days off work from this job because of the endometriosis. Ugh. Is it because of the new endo growth? This is month two of really heavy bleeding. Is it due to perimenopause? Is it because of leftover stress from the summer training classes? Four Days!!! I don’t even usually take THREE DAYS off in a row like this. It looks so very bad on the résumé, so to speak, and makes me consider whether I should file for disability again. Bah. I don’t miss 14+ days of work in a month, so there’s no sense in filing. They will reject me again. I really hope this job does not fire me for my increased absences. I cannot afford surgery until spring or summer, so absences will happen every month. :(

Something else I accomplished today - I checked back through my diary to see when the last time was that I took Soma when also dealing with endometriosis cramps, and it seems like it was in 2007.
I also found out from my own Things I’ve Tried page that “Soma dissociates me so nicely from the pain but leaves me moderately to severely depressed after taking it for even one day, contributes vastly to weight gain“.

What was I saying recently about how some things are best forgotten? In this case, it would have done me good NOT to forget. Now I have to monitor myself for further depression. I have already been gaining weight - I’ve gained 6lbs in the past month, and my whole body is feeling it. I don’t know if you can relate but I swear, my FAT hurts in my hips and arse. No joke.

Let’s hope I can undo the trapped nerve in the next couple of days, so I can get off the Soma again. But DAMMIT, it DOES dissociate me so very nicely from the endo pain. Blah.

Lots of TMI.

My period arrived on time yesterday (Monday) morning. I called in sick to work because I expected the pain to ramp up. When the pain did not ramp up, I felt guilty and set to housework. By 11am, the pain and bleeding came full force, and I spent the rest of the day on the couch on Tylenol 3 and Advil gel-caps.

I cannot remember how much Tylenol 3 I went through, yesterday. I want to say it was 2.5 pills. I went through 1,600mg Advil yesterday.

The pain was at times very sharp, and most of the time it was burning and gnawing. The pain was centered in the uterus and the right ovary, though sometimes the left ovary chimed in. I would wager that my pain averaged a 7 to 7.5 on the pain scale yesterday.

This morning, I shifted position in bed and a large gush literally squirted out of me, immediately soaking through everything. I scrambled out of bed before the bedsheets could be affected. The thick pad and liner, my underwear, and my pajama bottoms took all the damage.

Today was very heavy all day, tapering slightly in the evening, and now after 11pm, I am back to another surge - my body is trying to pass a clot at the moment. OW.

I also woke with a trapped nerve, because I slept on one instead of two pillows last night. The reason I slept on one pillow is that the Tylenol 3 makes it hard for me to breathe sometimes, and I felt like my chin was trying to touch my chest with two pillows. And on Sunday, my Alexander Technique instructor was telling us not to walk with our heads down, since a human head weighs as much as 20lbs and can hurt the spine if drawn forward all the time. So even while prone, I thought about this, and put my head back a bit on just one pillow so it would not be tilting forward.
That was an unfortunate mistake on my part, because I have bulging disks in my neck from a car accident many years ago, and anytime my head leans back even the slightest bit for too long, it impinges upon the nerves. So I woke with a trapped nerve.

As I wrote earlier, I wanted my husband to stay home with me today but he wouldn’t. I texted a neighbor and didn’t hear back. I went and knocked on their door but they didn’t answer. As I was about to walk to my car, dreading the drive, another neighbor pulled up to say hi on her way to the gym. I hitched a ride to the doctor with her, and got prescribed muscle relaxers. I took a whole Tylenol 3 and shuffled home because I did not have exact change for the bus and can never remember how much it is, anyway. It is a 0.4 mile walk, but a bit harrowing when in pelvic pain and trapped nerve pain in the neck/shoulder. I got home and the other neighbors returned my call and offered to take my muscle relaxer prescription to the pharmacy.

Due to snafu between doctor and pharmacy, my script was not filled til 2pm, so I was in burning nerve pain the entire time (in the neck/shoulder/arm), on top of the endometriosis pain.

I had by this time convinced my husband to come home early from work, and he picked up the muscle relaxers for me. I took one on the way to my psychiatrist appointment, which my husband dropped me off for. I was sedated and loopy throughout the appointment, but had notes ready and got out everything I needed to for the psychiatrist to make a decision.

She does not think I fit easily into the bi-polar category, but agrees I have some sort of mood disorder and wants to start me on Abilify right away. I told her I would research it, first.
This jives a bit with my psychologist - she IS convinced I have “bi-polar 1″ and wants me on Lamictal right away. I did not share this with the psychiatrist - I want her to see me a few times before I let the two start talking to each other.

I was miserable today, between the two painful conditions. I estimate the pain hovered at 8 all day. Even right now as I type, I am waiting for the latest dose of Tylenol 3 to kick in, and I’m whimpering in pain.

I have had 2 Soma pills today and I think I took 1,200mg Advil. I think I took 3.5 Tylenol 3 pills today. I didn’t take more than that for sure. I’ve been on heating pads all day. I’ve been laying around uncomfortably all day. At least the trapped nerve and the endo pain take turns. Right now the neck/shoulder/arm feels alright but the pelvic pain is hateful. Earlier I was able to nap a bit in a reclined position on the couch, but then my neck and shoulder started hurting again, with pain radiating down my arm again. So I got up and had some energy for a bit - which only means I could be in a sitting position for longer than 4 minutes - walking around still sets off more pelvic pain.

Now it’s back to pelvic pain. I’m going to warm the rice and corn heating pads for the 987543208573246th time today and try to go lay in bed. Here’s hoping I can sleep through the night.

I have called off work again tomorrow - I just know my body is not done with the heavy bleeding and pain, yet. I have a DMV appointment in the morning, anyway which cannot be cancelled. They sent me notice a month before my license was to expire, and the soonest I could get in for an appointment was two days before my friggin birthday. How lame. I have heard horror stories of people without appointments waiting 5+ hours to be seen at the DMV, and I’m in no condition to do that right now. So I kept the appointment and felt extremely guilty for taking time off work, but now it looks like the pain will keep me home, anyway.

My husband has developed some compassion and said he’ll see how I’m doing in the morning and may drive me to the DMV appointment. How nice of him.

The right side ovarian pain has been intermittent and mild throughout today as well.
This morning I had my follow-up appointment with Dr. Giudice, my ‘new’ GYN. She had a new nurse who wanted to make sure she had my history correct, so we went over the notes. I love how the nurses and doctors prepare themselves before speaking with the patients, it’s pretty awesome. Even if they only just read my history a few minutes before entering the room, they do a great job of putting off like they’d spent lunch hour or the night before poring over my file. It makes me feel respected and valued - imagine that! So far, Dr. Giudice’s office is three and a half to four star in my book (Not five star? Communication issues sometimes are the problem).

This morning we caught up to the present pain, and the nurse typed up everything for Dr. Giudice:

“38 year old with history of endometriosis and chronic pelvic pain presents for follow-up. worried about growth of endometrioma. increasing pain on Right ovary intermittent, stabbing. walking, heating pad not work. severe dysmenorrhea is stable, but patient reports worsening debilitating pain 1 week before her period which is new (similar to pre-surgery 2007). tylenol #3 and ibuprofen not work. during menses - bedridden, around-the-clock (ATC) meds. pain currently Right side, but can be on both sides.

2 visits with UCSF pain management psychologist - insurance stopped covering. sees psychiatrist (new appt next week), psychologist, alexander technique pain management (less movement)

4/21/10 - patient referred for pelvic MRI to rule out adenomyosis. Referrals for chronic pain clinic and pelvic physical therapy were given. She declined Mirena IUD, Lupron, presacral neurectomy.

6/23/10 - patient returned to review MRI. MRI revealed 1.4cm Left ovary endometrioma vs. hemorrhagic cyst, no evidence of adenomyosis. patient declined GABA cream hormonal treatment, or antidepressants. Patient is interested in surgical resection of endometriosis. The decision was made to defer surgical intervention.

Since then, she has called the clinic several times regarding nausea (7/2), passage of thin grey tissue during menses (7/26), and a heavier than usual menses (8/20). Her pain is currently controlled with Tylenol with codeine and Ibuprofen.”

That’s a pretty good history - I didn’t expect them to have preserved notes on my calls to their office! So cool. The only thing I take issue with is the “GABA cream” - perhaps the nurse got it wrong, I dunno. But during my visit to the pain management director in May, and my visit to Dr. Giudice in June, the word “cream” was not used to describe Gabapentin. It was called Neurontin and Gabapentin interchangeably, and was told to me that it’s usually prescribed as a seizure medication.

That aside, everything was ok with the notes/history. Dr. Giudice came in and we talked about my current pain, went over the available treatments again, and it was suggested I try an aromatase inhibitor. Dr. Giudice was under the impression that I was offered and had refused this treatment before. I find no reference to it in this journal, and I knew in my head that I had not had the conversation with her, so I asked her to expound. She told me that a lower dose would be used for me than for breast cancer and ovarian cancer patients, and that she’d have to add a progestin sidecar so that my ovaries won’t go into overproduction or further estrogen dominance.
I might have been sold but for the fact that progestin was mentioned. I told her why I’m reluctant to even use the Mirena IUD, which contains progestin, and told her that on Levonorgestrel, I get severely depressed. Granted, the dosage is much higher in what I’ve taken (Plan B) than in the Mirena IUD (controlled release), but I don’t want to take the chance after what’s happened to me in the past.

I told Dr. Giudice that I’m seeing a psychologist who strongly suggests I be put on mood stabilisers, and I will be seeing a psychiatrist next week who will see if that’s really the case. After I’m put on psych meds, I told Dr. Giudice, then I might consider the aromatase therapy. She was totally satisfied with my idea/request.

Next, we went to the exam room, and I underwent my second transvaginal ultrasound of the year. I know the routine now so we got right to it. I prepared myself a little better this time by taking 1mg Ativan before my doctor visit, and even though I still experienced pain from the procedure, I was a bit more calm this time around, and not traumatised at all.

The ultrasound revealed bad news: I now have endometriomas on BOTH ovaries, and I still have the damned free fluid (which means it’s likely pools of blood from the endometriomas) around the ovaries. My left ovary has also become reattached to my uterus…all within five months, since my last ultrasound and MRI scans.

So begins the Twenty Questions:
Did the stress of going to school over the summer hasten my illness? Or is it just progressing this way on its own? Is it my diet? Is it not enough exercise? Or is it just the illness, no matter what I do or don’t do?

I suffer emotionally with the 20+ questions, and I suffer physically with the pain.

After the ultrasound, Dr. Giudice made her recommendation - she wants to schedule me for a laparoscopy.

I asked her what changed her mind between her decision a few months ago NOT to give me surgery, and today. She said that there’s obviously more growth going on, and she does not doubt for an instant the pain I am in, based upon what she saw on the ultrasound in April and then today. She’s seeing the growth in progress. She asked me how soon I could schedule surgery. I told her next summer would be best, since I could take part of the summer off to recover. She asked if I could do end of December. I told her I’d have to check with my school, but I’d need more than 10 days this time around for recovery, since I’m not at a desk job like last time around. This time around, I’m chasing after preschoolers all day.

I asked her, if she has to take at least one ovary, what would that mean for me - what adjustments would my body have to make? She looked at me funny and said that apart from the endometriosis and a routine biopsy at time of surgery, she wouldn’t think of taking my ovaries. She said it’s always a risk to do so, since the ovaries, fallopian tubes and uterus are all so closely connected via ligaments and such to the bladder and bowels. It’s tricky stuff, she said.
Hah. That’s quite a change from my visit to Kate O’Hanlan a year ago!

Dr. Giudice told me to think about scheduling surgery soon, and said she’ll have her scheduler give me a call.

I got copies of the ultrasound and today’s notes, and then called my husband and told him the bad news.

We were JUST talking over the weekend about going to Yosemite for Christmas break, and now I am pressured to have surgery at that time. :(

I told my husband we’ll have to have a big talk about finances, and that likely we won’t be able to swing December, anyway, since we’re still clawing our way through debt incurred this summer when I went to a teacher training course.

If I have the surgery on summer break, then I can go to Yosemite in December, and I can fly to Michigan for my promised annual return in the summer, after I recover for a month and a half after surgery. That is, I can have my cake and eat it, too.

Then the doctor asked what most doctors have asked me, “How long are you willing to suffer with the pain?” i.e. “do you LIKE being in pain? Get in the surgery room now!”

It’s not that simple, dammit!! I can’t just drop everything and run to surgery. The last surgery, under a different insurance, still cost me $1,500 out of pocket in co-pay stuff, plus eleven days without a paycheck. I have a different insurance, and I make $8/hr LESS than I did last time I had surgery. I have to check with this insurance, and I have to pay back existing medical bills and other bills FIRST, and also talk to my husband to see how he’s catching up financially, before we jump into the whole surgery in December thing.

Blah.

When I got home, I reviewed the ultrasound paperwork, and compared today’s imaging and round of notes to the last ultrasound, as well as to the MRI.
I found that things got really spinny at that point - it seems that all of us - me and the doctors - have been referring casually to both ovaries as the one which has the endometrioma on it.

In January, March and April, 2010, I experienced debilitating RIGHT side ovarian pain, per my iCal. In mid-March and again in mid-April, it felt like I was experiencing an ovarian cyst rupture on the RIGHT side, I was in so much pain.

On April 21, 2010, the ultrasound revealed the following: Possible endometrioma on the RIGHT ovary, measuring 0.9cm. Nothing on the left ovary.

On May 27, 2010, I went for an MRI, which revealed the following: The RIGHT ovary is NORMAL.
The LEFT ovary has a 1.4cm mass, “which, given the clinical history, likely represents an endometrioma.”

I didn’t pay attention to left or right. I only thought OH MY GOD THE ENDOMETRIOMA IS CONFIRMED AND IT’S GROWING.

In reality, what happened was that Dr. Giudice found an endometrioma on my RIGHT ovary, and the MRI people found an endometrioma on my LEFT ovary. One didn’t just pop out overnight in time for today’s ultrasound.

So in reality, I have had two endometriomas - one on each ovary - for gods know how many months.

The endometrioma on the LEFT ovary was 1.4cm as of May 27, 2010 at the MRI visit, and on September 8, 2010, that endometrioma was visualised on the ultrasound to measure 1×1.1cm. So it is shrinking ever so slightly…possibly.

The endometrioma on the RIGHT ovary was 0.9cm on April 21, 2010 as visualised on the ultrasound, and on September 8, 2010, the endometrioma on the RIGHT ovary grew to 1×1cm, also as visualised on the ultrasound. The MRI did not find an endometrioma on the RIGHT ovary back on May 27, 2010.

I asked my GYN to confirm the size of each of my ovaries - I guessed 3cm. She said just under 3cm. So a 1cm endometrioma is eating a third of each of my ovaries. She didn’t see it that way - she said that the endometriomas are small. But in relation to the total size of the ovary, I’d say the endometriomas are BIG.

In either case, she had already made her suggestion that I get my ass into surgery ASAP.

You know I’m TOTALLY having a pity party right now. :(

August 25: my husband and I were intimate.

August 26: Intermittent vaginal and pelvic pain all day - ever since intimacy the night before. This is common, since I am clinically diagnosed with Dyspaneuria, and it’s depressing.

August 31: I was scheduled to see the pain management psychologist at UCSF for our third visit, but I cancelled it because my husband’s health insurance carves out psychological treatment to some third party company called Magellan, and therefore my pain management clinics at UCSF are NOT covered. This has thoroughly pissed me off to no end, and I spent a large part of July and August in rage over it.

August 31 was also Day 8 - when mittelschmerz was supposed to hit, but I did not! I made no mention of pelvic or ovarian pain in this blog or on Facebook, or in my iCal endo notes. So this is awesome, I did not have mittelschmerz this time!

September 5: Right side ovarian stabbing pain, and low back pain - by evening. Took 600mg Advil and one half T3 at bedtime. We had driven down to Southern California (8 hours) to visit my husband’s ailing grandmother, and it was 95°F (35°C). Grandma refused to turn on the air conditioner or the fan because she was convinced it was already on. I swear we got heat exhaustion - both of us nearly passed out at varying points of the afternoon. I finally turned on the fan, and when my husband’s aunt showed up for her evening routine of caring for her mother, she switched the unit from fan to air conditioning.
I think the long drive down there is what set off the ovarian pain, or it could have been the mocha I had that morning (caffeine).

September 6: Continued right side ovarian stabbing pain all day. Took 1,200mg Advil and 1.5 T3 over the course of the day - but it did not mitigate the sharp stabbing pain. I was in pain during our second visit to grandma, and all the way home.

September 7: back to work - the ovarian pain was intermittent and mild throughout the day - possibly because I was back to moving around again, the pain was lessened?

In other news, the light cough I developed around August 18 left again by around September 2, and has returned again as of today. I’ve begun to wonder if it’s my newest nervous tick, or if I really have been getting virus after virus since July 18. The last two have been just a mild cough, though yesterday I ran a 99°F temp all morning. Ah, the wondering that I do. My husband and I talked about this on Monday - the so-called Twenty Questions I do to myself all the time with the endometriosis, and how it never really gets me anywhere. Sure, my questioning of my diet led me to discover the gluten, yeast and sulfite sensitivities, and it helped me to realise that cow’s milk, coffee and corn syrup set off immediate pelvic pain, but more often than not, it’s just too hard to really know what causes the pain, and yet I punish myself with this never-ending cycle of guilt.

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 pain and bleeding did not ramp up again until 2:27pm today.

I had gone to bed right after a shower last night, around 10:30pm.
It was the second night in a row that I’d gone into the bedroom for a moment and just fell asleep for the night.
I did not wake up until 11am today, and I was still very tired upon waking. I forced myself to eat some breakfast and stay awake. I decided to call my cousin back and chat for a bit, and also check in on the news feeds for endometriosis. I finally put a new article up on the main site.

I had spent the second day in a row at the kitchen table, because during this cycle, the pain has been mitigated best by sitting upright in a hard chair. Strange, but I’ve learned to go with it. I had just finished publishing my article, when I felt the familiar pain start to spread out in my pelvis. It feels hollow at first, then it’s like a melon-baller is being used on my uterus. At that point I stood up, and of course I knew what would come next… GUSH!
I went to the toilet, and I think I know what caused my latest round of pain and bleeding - I had to have a movement, and I’m constipated, so things were backing up and pushing all up on my uterus, fallopian tubes and ovaries. That is what caused the pain, I’m suspecting.

While I was in the bathroom, the neighbors next door decided they’d like to use the gas leaf blower and weed whacker…and of course my windows are open. I darted from the bathroom and closed the windows. That’s when the phone decided to start ringing. I ignored it.
Why does everything need to happen when I’m trying to take care of myself?
I nearly vomited from the strain and pain. I’ve been taking my calcium citrate pills but it’s not enough to fight the constipation caused by all the Tylenol 3.

Speaking of which, I have not had ANY pain medication since about 3am. The last thing I took was some codeine cough syrup.

Now that the pain has set back in, I just (2:53pm) popped a full Tylenol 3 while I wait for my unhealthy lunch of rice noodle Macaroni & Cheese to cook. I ate half a sesame seed/peanut butter/honey crepe from Trader Joe’s before consuming the medication.

Soon I will have to be bedridden again.

I spent half the day doing stuff for me, at the expense of getting homework done. Now I am in pain, so getting any homework done today will be a challenge. Enter GUILT.

Hm.

Since this is Day 4 of menstruation, and I had several hours’ break in my bleeding, perhaps this is the Last Gasp. Perhaps by tomorrow I’ll just be spotting and on to renewed health for a couple of weeks again.
I can hope.

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.

Yesterday I consumed over 1,600mg of Advil gel-caps and I think a total of 2 Tylenol 3. I sometimes forget.

…counts remaining pills…

Yeah, that’s correct.

Today I have taken a total of 2 Tylenol 3 and I have consumed 1,000mg of Advil gel-caps.

*** TMI ALERT ***

My day started at a 7 on the Mankoski pain scale and when I sat up in bed, blood just gushed forth. I am so glad that I wore my super giant fabric pad to bed last night. When I got to the bathroom, I was amazed at how soaked the pad was in just that instant. When I had cleaned myself up and got up to flush the toilet, I was amazed to see freshly clotted blood on the lid of the toilet behind me. I tried to wipe it up with a quick motion, but it still smeared. Shock set in at that point, I swear. I can only handle so much blood.
My husband came home from the gym about that time, and I emerged from the bathroom, wide-eyed, and told him all about it, the poor thing.

He takes it in stride, I think. Poor guy has been seeing me in pain and with abnormal periods for the last ten years, now. Hopefully he’s used to the TMI. We’ve both seen each other through surgeries and worse, anyway. We’re young veterans, heh.

In other news, I forgot to take my supplements so far today. It’s been hard, since yesterday and today I have suffered moderate nausea and low appetite.
Last night, my husband brought home sugar-free, dairy-free Coconut Bliss ice cream, and I ate that for dinner, heh.

I noticed that when I’m bedridden, I’m pretty much on a cereal diet, or a diet similar to one who has the flu. Sometimes there’s a load of comfort food / junk food thrown in, but not always.

Today I got so nauseous that I had to stop reading my homework, and I could not look at the computer for very long. I’d type something in chat and then look away for minutes. Still, I forced myself to make some lunch around 2:30pm or so. I cooked up some chicken and made a ‘Thai’ broth; a cup of chicken broth with half a can of coconut milk, 1tbsp chili paste, 2tbsp fish sauce, and some other seasonings. I added broccoli and mushrooms, onions and garlic, and some baked chicken. I put it all over some Basmati rice. It was pretty good. Needs to be spicier next time, and less salty.

After lunch, I read some more homework for a bit, then took a shower. The bleeding usually abates when I spend time in the shower or bath. Or at least it used to. For the last several menstrual cycles, this has not been the case. It’s more like a scene out of Stephen King’s “Carrie”.

Oh and I’m still having weird dreams and nightmares. Last night I had a doozy - an actual out of body experience from sleep state. It was actually kind of neat, though.

Tonight my husband has a dinner engagement that he’s been looking forward to me attending with him, but I have to pass. I don’t want to be center of attention when the cramps start back up again. I don’t feel like being out in public with this much bleeding going on. I don’t use tampons because I’ve always been prone to yeast infections and urinary tract infections, and on top of it, I have a short vagina and a retroverted uterus, so things hurt when they’re put into the canal. And anyway, I bleed right through a damned tampon. So in case anyone wanted to suggest that in order to get me out of the house, you can forget about it. ;)
I feel bad, but at the same time, I’d rather not move around much and make the pain worse. Even getting out of bed to make lunch earlier set off a new round of cramps, and I had taken 400mg Advil. I should have taken twice that, but I knew I was already at the 1,000mg mark for the day, so I backed off until after I got out of the shower, when I took a half a Tylenol 3 in order to make sure there is constant overlap in my medication dosing. Just don’t wanna chance getting up to 7 or 8 on the pain scale again.

The past two days have been sunny and in the 70s outside, and I have not seen any of it. This time around, I don’t even care.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I don’t feel like I fully conveyed my sense of frustration and panic over my highly regular cycle throwing me for this much of a loop.

When my period is even a day late, I freak out, since it’s a trigger for me. I’ve been pregnant twice in my life, with the first time being at age 18. I have never gotten over the trauma from that first unwanted pregnancy - I always feel like I’ll be in big trouble, like my life will be over, like I’ve really screwed up this time, etc. The weight of this stress is enough to throw my shoulders and back out. I’m nearly to that point today, and I took a mental health day off work because of it.

I feel like I’m in limbo whenever my period is late. I go through each minute of each day knowing I should have been bedridden already. I’d already planned for the time off work. I’d already stocked up on groceries and tried to prep the house for my descent to the underworld. And then george is a no-show and I’m left biding my time, Waiting For It.
I’m in that special hell where I cannot exert myself too much because it causes pain…but I’m not in debilitating pain. And I’m super tired - I want to sleep all day and all night. And yet because there is no constant gnawing pain and/or bleeding going on, I feel like I’m expected to BE somewhere and DO something productive. But my body isn’t up for it. But my mind is restless. So the guilt sets in. I have video blogged about the guilt before (catch it here and here), but it’s so hard to LEARN the lesson and just be okay with whatever my cycle is doing - just roll with it.

I get so caught up in knowing where my uptime and downtime is, that if I end up with a little more uptime than expected, I freak out over it. I feel like something is seriously wrong. It’s like I’ve told myself I’m not allowed to go over 25 days between menstrual cycles - that if I do, it means I’ve messed up big time (see above-mentioned trigger).

Now, the last time my menstrual cycle did a huge change on me was 13 years ago, probably as I was settling in from a major life change - moving across country.

Now I’m edging up on the age of menopause, so I should expect that my menstrual cycle is going to start acting funny, and that this will last for years until I stop menstruating altogether.

But it’s not reassuring. I know I have an ovarian cyst, that I’m prone to the cysts, and that if the cysts grows bigger than 4cm, I have to consider cancer testing.

I have an MRI scheduled in two weeks, but I’m not reassured. I called the doctor but they have no openings today or tomorrow, the soonest I can get the MRI is next week, but I’ll be in Michigan.

So it’s the waiting game. I’m in Limbo, that special hell where I wait for either my period to show up or positive pregnancy test or the MRI to confirm Something Bad™.

This morning, I went out back of the house and tried a bit of tetris in the storage unit. It went well, but the exertion left me nauseous, dizzy, weak/trembling. Between that and the fact that my vaginal mucus FINALLY turned slightly pinkish this morning, that’s all I have to go on that george will be here soon.

Normally it’s nothing for me to lift and move a few things in the storage unit…but it’s 30 minutes later and I’m still shakey and nauseous. The nausea is from the damned ovarian cyst.

My cats caught sight of the cat carrier and luggage and made their way quickly to the closet. Now I keep hearing a scratching sound, but I don’t think it’s the cats. At least, it wasn’t when I last checked. Someone next door outside or someone upstairs from me is sweeping or brushing at something, I guess. But it’s driving me nuts because I’m already in a panic state. I turned on Internet radio to drown the brain weasels and the scratching noise. It’s helping a little.

In the meantime, the nerves have flared up in my legs - I’m getting nerve pain down my inner thighs and tops of my legs all the way to my calves. Usually the pain only goes to my knees. The radiating nerve pain is another sign of george.