I Will Not Suffer In Silence

Because my first pre-op appointment three years ago was not documented, I give you… super long ass detailed entry for this pre-op appointment!

I woke this morning around 6:30am in debilitating pain. I estimated I was 7.5 on the pain scale. Getting out of bed ramped it up to 8 on the pain scale. I wolfed down some cereal and took 1.5 Tylenol 3 in an effort to whack the pain.

Just after 7am, we loaded the wheelchair into the car and were on the road. I was nauseous and shaking from the pain - about an 8.5 on the pain scale. I cried on the way to the doctor’s office.

The pain meds kicked in about 30 minutes after taking them. I became chatty and felt alright. We were on the Bay Bridge, just approaching the toll booth at that time.

Then it went aweful again.

I became really dizzy and nauseated from the Tylenol 3. It occurred to me then that this had happened before - on the drive back from our one year wedding anniversary in Mendocino, California last year. I was on Vicoprofen at the time, but the results are similar enough - I was severely nauseated and dizzy and hunched over in the seat to try not to vomit.

So I noted out loud that when I am on codeine, I must not be in a moving vehicle, nor should I be ambulatory.

The visit itself went well. Nurse Jessie could see that I was poorly, so she ushered me into the room she usually reserves for me when I visit. She had me lay on the exam table and put a blanket on me. She got me a cup of hot water to drink.

My husband was with me the whole time. I was able to snooze for a few minutes, and then Dr. Giudice and her assistant, Dr. Skillern, came in to start the visit. At first Dr. Giudice described the general procedure and what to expect. She let Dr. Skillern talk a few times. After a few minutes, I said I was confused - I thought Dr. Wang was going to assist. Dr. G and Dr. S looked at each other, then back at me, and Dr. G simply said, “she was, but no.”

Oooooookay then! Wonder what untimely end her employment met!

At this point, I gruntled and shifted and forced myself to sit up so I could take notes, because I noticed my husband was not writing down anything on the questionnaire I had typed up. My surgeon took the 3-page document and we went over it together, twice, just to make sure everything was covered.

You really should copy these questions for your own surgeon interview. I got the questions from various places on the web, as well as using my own questions.
The questions are barely in any ordered format.

1) How many pelvic laparoscopies for endometriosis have you performed?

Well over 500 since 1987.

2) How many in the past month?

Dr. Giudice is a big ‘ol rock star now, so she often travels for seminars and such. She said that 93-95% of her surgeries per month are specifically for endometriosis.

3) How many had complications during the procedure?

She hates to jinx herself, but she says only one complication, and it was a fibroid issue - she discovered it was embedded in the uterine wall when she tried to take it out….

4) Do you have rectal surgery experience?

Yes, but it depends on how serious the endo is in that region.

4a) If not, will you have someone on hand in case there is rectal involvement?

No - she said that if adhesions to the rectum and intestines are found, they’ll do what they can within reason. However, if it requires a bowel surgeon, it’ll have to be yet another surgery. They just don’t have the surgeon on standby like that. Ugh.

5) Do you have intestinal surgery experience?

No

5a) If not, will you have someone on hand in case there is intestinal involvement?

See 4a above.

6) How much experience with pelvic laparoscopy for endometriosis does your assistant have?

More than 84 laparoscopic hysterectomies.

7) How many staff will be in the operating room with you, and what are their jobs?

Roughly six people: surgeon, surgeon’s assistant, anesthesiologist, anesthesiologist technician, scrub tech, and a circulation nurse.

8) Will you please correct my retroverted uterus?

Sadly, she cannot. She said the uterus is already held in place by a series of ligaments, and to push it into a position it was never in, even if it’s the “right” position, can lead to tissue damage and serious side effects. She said she’d see what she can do while she’s in there - perhaps she can put some sort of material between the uterus and the bowels so that it’s not gluing itself to the bowels anymore…

9) What sort of preparation is necessary for this surgery?

She wants me to do a bowel prep. HUGE SAD FACE.

10) What kind of anesthesia will be used?

General - I will be intubated.

11) Will I be given Versed?

I can ask for it at time of surgery.

12) How long do you expect the procedure to take?

Two and a half hours.

13) If one or both ovaries are badly damaged from the endometriosis, will you take one or both out, and what are my next steps (even if it’s just one ovary that has to be taken out)

It is not her intent to take anything. She only intends to treat surface disease and excise the endometriomas.

14) Will there be photos or video of the surgery?

Photos.

15) If a biopsy is done, when can I expect to receive results, and will my doctor call me?

Ten days post-op, though the holiday may delay until after Christmas (unless it’s bad news, then I’ll be notified immediately). The doctor herself will call me in either case.

16) I do not plan to take hormonal suppression after surgery – will this prolong healing time?

Not per se - taking hormonal suppression only serves to help prevent regrowth.

17) What vitamins/supplements should I avoid just prior to and after surgery?

Everything on my vitamin and supplement list is safe to take up to the day before surgery.

18) What foods and drink should I avoid just prior to and after surgery?

No food, drink or vitamins after midnight the night before surgery - otherwise, just stick to my current diet.

19) I know that being overweight can make me more high risk during surgery. How much weight should I lose in the next two weeks?

Not necessary to lose any weight (I am 5′5″ and weigh 166lbs and Dr. Giudice says it is not considered dangerous or obese for the surgical procedure).

20) What areas of my body need to be toned up in the next two weeks?

Nothing I can do will matter for this type of surgery, says Dr. Giudice, but if it will make me feel better, go for it.

21) Would a tubal ligation help in any way towards the “hormonal suppression” idea, or is it merely a birth control move?

It is merely a birth control move.

22) How many menstrual cycles do I need to give it before I declare this surgery a success?

It’s always hard to say. The risk of this surgery is that I might not experience any pain relief at all, just as with the first surgery. I was told not to be so hard on myself. I was told that they hope that I would have immediate benefit from surgery, but giving it 3-6 menstrual cycles is also rational.

23) When can I return to work as a preschool teacher?

Six weeks, preferably. Four weeks is okay with restricted movement.

24) When can I resume bicycling?

Four weeks.

25) When can I resume sexual intercourse?

Four to six weeks.

26) What results can I expect from this surgery?

Find the scar tissue and fix it. Correct the pulling on the right side.

27) What is the next step if this surgery does not work?

The Mirena IUD will once again be suggested, along with seeking help for Chronic Pain Syndrome, and continued pain management therapy.

Notes:
I’ve been worried about sleep apnea and heart murmur again, because I often get up multiple times during the night to urinate, and I often have a racing heartbeat in the middle of the night. This has been going on for about a year, but I’ve been too stubborn to accept a new medical issue. Now that I’m facing surgery, I’m concerned. I would like to push for an ECG, to see if the murmur is stable since my last exam, which was in August, 2001 at CPMC.

I was told to talk to my primary doctor. I called my insurance and they said I can self refer, so I’ve got a call in to a cardiologist.

Other notes to doctor:
Please be super careful when intubating me, because last time, my lower right inside gums/jaw was scraped open. I had a gash to worry about healing in my mouth, on top of the pelvic wounds. It took weeks for my mouth to heal up.

I was told to tell this to the anesthesiologist.

Other notes to doctor:
Please be super careful when catheterising me, because it took me several months after surgery last time to regain muscle strength to stop leaking urine.

She had her assistant note this, and said they will use a pediatric cath this time.

After the appointment, which I ended because I really needed to use the bathroom, I dreaded the walk back to the car. The Tylenol 3 was still coursing through my bloodstream, so even the elevator ride back down to the main floor made me wanna hurl. Once outside, I was off balance and shuffled a lot. I had a fixed gaze and probably a stupor to my face the whole way back to the parking garage. I did not use the wheelchair, though, because I felt that sitting and being pushed would be like being driven in the car, and that made me super nauseated.

The car ride back home was just as nauseating as the car ride to the appointment, but with the added hell that the pain relief part of the medication was wearing off. I felt every single bump in the road, and yelped continually. I declared that we are renting a Lincoln Continental or similar for surgery day. I want something comfortable and quiet to ride in. Hubby said no problem. ;)

I had blood work to submit, so my husband took me to the lab in our town. It’s not usually busy. I staggered in and filled out the paperwork, and waited. There was one guy ahead of me, rattling off all the names of people close to him who’ve died in the past year. So sad. He was getting blood work to rule out some kind of illness - he was saying he hoped he’d get good news back. I hope he does, too.

The phlebotomist I had was horrible. I think she was still rattled from the last guy, cuz when she emerged from drawing his blood, she looked like a deer caught in headlights. And she was young. She asked me what my blood draw was for and when I told her, she had no idea what endometriosis was, and told me she hoped the surgery lasted so that I’d never need another. Feh. That’s not how endometriosis works, but thanks.
She stuck the needle in without first securing the tourniquet or even telling me to squeeze my fist. Then she moved the needle around confusedly when the blood didn’t start pouring into the vial. I squirmed and yelped and whined, just as my husband returned with his coffee and said ‘Hi!’ … then he went grey and backed away into the waiting room.
The phlebotomist apologised but kept at it. A few seconds more and I could take no more. I told her to stop. She looked defeated. I told her to try the other arm, and not until the tourniquet was on for a moment, and not until I was squeezing my fist. She obeyed, and the blood squirted forth into the vial.

When we got back from the lab, I got into my pajamas, ate a couple of potato chips and went to bed. I was only able to sleep for about 45 minutes before I woke starving. I ate some pumpkin pie and something else - I forget.

I was unable to go back to sleep, but at least the pain had gone back down to a 4. I was still pretty high from the one morning dose. I kept trying to nap, but it wouldn’t last long. Around 3pm, I finally fell asleep for an hour and a half. The only reason I woke was that my cat had knocked against the inside of the closet. The noise alarmed me, which alerted me to the fact that my bladder/uterus was screaming to be emptied. I also noticed at that point that I was insatiably thirsty. I went through a pint and a half of water in minutes. This of course led to me having to pee every five minutes for the next two hours…

At about five minutes to 5pm, while bedridden and hanging out on the laptop, a new round of cramps appeared. I had the webcam on while chatting with my husband, so he got to see the change in my face, and he mentioned it. The cramps ramped up immediately from a 6 to an 8. I whimpered and yelped and tried to breathe. I took a full Tylenol 3, cursing the entire time, as I had only had one half hour of lucidity all damned day, and now I had to start a new round of being high on pain meds.

No position was comfortable. I stood up. I squatted down. I got on hands and knees. I stretched up, then down. I tried heating pad on the front, then on the back. I sat on my knees. It wasn’t until the Tylenol 3 kicked in and I had some dissociation that the intensity calmed down. Now I can feel the stinging pain, but at a distance. I have low level nausea from the meds and all the blood. And if I wasn’t already tired, I’m more tired. When my husband gets home, we’ll have Indian food delivered and then I’ll go to bed for the night, and hope I wake up pain-free tomorrow.

Twenty months ago, I tried out some pH strips to try to get my pH on a continual balance. It lasted a couple weeks at best before I ran out of strips and was too lazy to keep at it.

I had heard about pH balancing sometime in 2007 or 2008 by user utah31* over on DailyStrength.org - she said it was miraculous for her mother-in-law, so she tried it for endometriosis relief, and also found massive benefit.

Over a year later, I decided to give pH balancing a try, and well…I didn’t adhere to it.

Then on November 6, 2010, I bought a new pH strip kit. This one is one big roll that I tear off pieces of strip from and test my urine, as opposed to individual testing strips like I used last year.
To my dismay, each pH testing kit has a different colour code it seems. Being dark blue means I’m nice and balanced for this pH kit. However, when comparing it to my testing last year, I’m rating super alkaline on that colour coded scale. When comparing last year’s testing to the kit I bought this month, I’m rating on the acidic side of the healthy range.

Thankfully, I’ve never rated yellow or red on the strips from last year or this year, so I’m not suffering from acidosis or anything like that. I may be too alkaline at times I guess.

Today for example, I drank warm blueberry juice (high in antioxidants) with my breakfast of sweet yams and inflammatory food - ham. A couple of hours later, I tested my urine’s pH and it came out dark blue. On this year’s box, the colour code says I’m in the normal range. Comparing it to last year’s colour code, I’m at 9.5 or highly alkaline.

Clearly I need to do more reading on this so-called pH balancing science.

*(Special note - utah31 is no longer on that forum due to massive drama that seems to have hit the site in the past year and a half when a highly mentally unstable self-proclaimed wiccan chick began blasting hate-filled rants at everyone. Thankfully, by that time, I was no longer logging in regularly enough to be exposed to her bullshit. I’m saddened that she single-handedly seems to have destroyed the community that was there. Since that time, a whole new group of questioning people seems to have become active members on that site. I just don’t have time right now for all of these people’s need for education about endometriosis and treatment).

Thursday was a pain-free day! Yay!

On Friday, the pain returned. I had a lot of joint pain and back pain that day. By evening, my upper back was trying to seize up. By the time we left our friends’ house, my left upper arm was in constant spasm. As a matter of fact, it’s still in spasm.

Despite the low back and pelvic pain for much of the day (which was kicked up after being intimate, OF COURSE), I went walking all over town with my husband, and I refused to take pain medication in case I wanted to partake in any alcohol with friends (which I did later that evening).

I wondered if the resurgence in pain could be attributed to having been intimate with my husband, or if it was due to the impending rainfall, or if it was due to eating inflammatory foods, or all of the above. I felt guilty only for the inflammatory food ingestion, but only a little guilty. I have to LIVE my life, dammit.

When we got home last night, I thought I would need to go right to bed, because for some reason I was running a 99.9°F fever. I got all paranoid that someone I’d spent time with at two Thanksgiving gatherings the day before had gotten me sick. The flu is going around, and I’ve been trying to avoid the preschool crud for the past month as it is.

Despite the fever, I found I was restless. This is when the urge to CLEAN came over me again, as strongly as the urge had been on Wednesday night, when I was on my hands and knees wiping down baseboards in the kitchen and bathroom.

I was up til nearly 3am dusting furniture in the living room and rearranging toys and knick-knacks that we collect.

Part of the reason for this rearranging was that my husband has just purchased a new television and will be purchasing a new furniture stand for said television, so we needed to clear off the old entertainment center. I just had the energy in me to do it in the middle of the night last night, is all…

All the dust from the shelves had stirred up my allergies, so I took a full dose of Benadryl, hoping that it would serve to knock me out so I could finally get some rest.

Rest was not to be found! Though the good news is that my temperature went back down to normal.

I went to bed around 3am and still could not settle. And on top of it, I was freezing (thanks to premenstrual hormones). My entire body was tense, and my left arm was still in muscle spasm - not painful spasm mind you, but just a continual muscle twitch up near the shoulder.

Around 4am I could take it no longer, and I took my very last half pill of muscle relaxer I’d been saving. Finally, between the Benadryl and the muscle relaxer, I was able to get in a few hours of sleep. However, by 7:30am, my entire body was in full on clench mode again. I was sleeping with my fists balled up and my shoulders trying to touch. Even the heating pad didn’t dent the muscle tension.

I swear, at this point I prayed for horse tranquilizers.

Intermittently throughout the night, the pelvic pain also made itself known. It’s hard to know if the pain was solely because I’d been intimate with my husband the day before, or if it was solely because my period is due today, or if it’s the rainstorm that finally manifested overnight, or if it is a combination of all of the above.

Then there’s the fact that I’ve eaten nothing but inflammatory food and drink all weekend (pie, cookies, chocolate, nigori sweet sake, ham, steak, crab, butter, waffles with syrup, bacon, coffee with sugar and cream, cheetos!!).
Seriously, every last one of those items is on the inflammatory foods list and/or my forbidden foods list.

Today I will begin the round-the-clock Ibuprofen dosing. The pelvic pain is a low, droning ache. The low back pain is moderate, and is as a result kicking up some nausea. I’ve been doing slow stretches since last night for the pain.

My fever has not returned - so far so good! I really don’t like dealing with the endometriosis flareups while also being sick with a virus.

Outside, the rain is an on again, off again drizzle, with threatening-looking clouds. It’s a breezy 52°F (11°C).

And that’s the report - I was due today but so far nothing has started to flow, yet, aside from the pain of course.
I estimate I’m currently a 3.5 on the pain scale. And now it’s time to get up and move around…and take that ibuprofen.

This has officially entered into NOT OKAY territory.

I continued to have pelvic pain throughout the day and evening on Sunday. I forgot how much Advil I ingested, but I know I took half a Tylenol 3 Sunday night before going to a friend’s house to hang out.

Yesterday was my first day back to work after missing two and a half days late last week. I bicycled to work, because I was excited to no longer be bedridden, and the cramps and bleeding had gone away. Or so I thought. :(

I experienced intermittent, sharp pain in the low uterus and on the right ovary throughout the day. The pain got really bad when I pedaled hard from work to my psychology appointment (ONE MILE), then pedaled hard to get home (HALF a mile!) so I could make it to my naturopathy appointment in time.

These are short distances I pedaled, on level ground. To be in a lot of pain like that threw me for a loop, but it’s not the first time. It happened to me back on September 20, while bicycling to my psychology appointment after work. I experienced pulling, stabbing pain in my right ovary. The pain lasted for several minutes after I climbed the two flights of stairs to my shrink’s office. Same thing again yesterday, but it was both the low uterus and the right ovary.

I have had the usual “OMG I’M SO TIRED” post-menstrual cycle thing going on, only it’s exacerbated by the fact that we just observed Daylight Saving Time this past weekend. So this fatigue thing will last through the next cycle for me, at least. :(

Last night we hung out at another friend’s house, so we could watch the second episode of The Walking Dead (it’s awesome, btw). Once again, I needed Advil (400mg) and Tylenol 3 (half a pill) to get through the evening. It was much worse to be standing or walking. The pain was likely a 5.5 on the pain scale when it struck throughout the day, spiking to 7 when I was riding my bike. The pain dropped to a 3 on the scale when I was sitting, though every muscle in my body was tense again, steeling against pain.

I got home from the shrink last night and then hopped in my car and drove over to the dispensary to attend my first Naturopathy class. Like most things, I’ll try it once and see how it goes. The naturopathic doctor I saw knows what endometriosis is, and seems confident she can help alleviate some of my pain. She is realistic and knows that the condition is currently without a cure, and very tricky to control. For that, I am retaining her. I like smart doctors who aren’t arrogant or cocky, or who promise me a cure *coughchoke*doctorkateo’hanlan*cough*

This brings us up to today. The pelvic pain is STILL with me. I had intermittent pain throughout the day again, and it got to stabbing level, spiking to a 7, when I ran half a block from my car to my home to catch the FedEx person in time. Once again, standing is worse than sitting. I’m about to head out with my husband for some groceries and supplies based upon my visit to the Naturopath last night, so we’ll see how bad the pain gets. :(

Going back to the Naturopath for a moment - she has several things for women with endometriosis to try. I am sharing these things here for women who do not have a Prop 215 card and/or who cannot afford to see a Naturopath:

• Drink half your body weight in ounces each day to facilitate elimination.
• Use castor oil packs over the abdomen and pelvic region every day for 20 minutes (see instructions below).
• Buy the Anti-Inflammation Diet and Recipe Book, by Jessica Black, ND
• Take 20,000iu of Vitamin A in palmitate oil daily (DO NOT TAKE THIS AMOUNT IF YOU ARE TRYING TO BECOME PREGNANT, AS IT CAN CAUSE BIRTH DEFECTS)
• 1oz vitex agnus-castus (chasteberry) twice daily via dropper or mixed into food
• 15 drops of seroyal chelidonium plex twice daily
• Seed cycle: From Day 1 of menses to Day 15, take 1tbsp daily of ground flax and ground pumpkin seed. From Day 16 back to Day 1 again, take 1tbsp daily of ground sesame and ground sunflower seed.

To create the castor oil pack, you will need:

• unbleached, non-dyed cotton, wool or flannel cloth, about 15″ - 20″ in size
• plastic wrap (or wax paper)
• glass dish with lid
• small bath towel
• hot water bottle or heating pad
• 6oz castor oil

Directions for the castor oil pack:

• Pour enough castor oil onto the fabric to saturate the cloth.
• Lie down and place the oil-saturated cloth directly on skin over treatment area.
• Castor oil stains! You may wish to cover the saturated fabric with a piece of plastic wrap or wax paper.
• Place the bath towel over the plastic wrap. If using heat, apply it now (medium warmth).
• Rest. :) You can rest for 20 mins or leave the pack on overnight.
• When you are done, store the oil-saturated fabric in a glass container with a lid. The fabric and oil can be used for months this way. Add more castor oil as needed. If you take a break in treatment days, just store the container w/ fabric in the refrigerator.
• To remove the castor oil from your skin, wash with a solution of 3tbsp baking soda per quart of water. You can use the same solution for washing castor oil out of linens and fabrics. Keep in mind that castor oil WILL stain cloth!

It seems like a lot, but I’ve done a lot more for other regimens, elimination diets, and detoxes/flushes.

It’s one more thing I have to say, “Hey, I tried it.”

Friday night (Day 3) I was still feeling crappy. After dinner, I ended up with stomach pain on top of the endo pain, along with the pelvic nerve pain radiating down the legs. I was at that point officially having a pity party. I was getting depressed. I had already missed work and didn’t go outside to see the sun on Wednesday, Thursday, and most of Friday.

I did notice by 9pm Friday though that the bleeding had begun to dissipate. Overnight, I barely bled at all.

When I woke up on Saturday, I hoped I would continue to be heading out of the Underworld. However, that was not the case. We had to get up at 8am to join friends for one of their pre-wedding meetings at the wedding location, but I just did not want to get out of bed. I was seriously tired. At the same time, my back hurt from top to bottom because of having been bedridden for days - again. The pain was intense - it felt like stinging.

I finally motivated myself out of bed at 8:30am and got in the shower. Trying to get dressed after my shower was excruciating. I had to pick up my ankle and move my leg gently, placing my ankle on my knee so I could put my socks and shoes on. I wrote to my friends “You know it’s that kind of morning when you end up shouting, “ON YOUR FEET, SOLDIER! MOOOOVE!” at your uncooperative body.” :(

We made it to the wedding meeting ahead of schedule, thankfully, and I moved super slow. The sister of the grooms showed up as well, since this meeting focused on her, since she is the one catering the wedding. Now she also has endometriosis - we are still waiting to find out what stage. But it’s got to be stage III or stage IV, because she also had a lot of other stuff going on, and had to have her uterus, cervix and right ovary taken from her. :(
Her surgery was three weeks ago, and she still looks like death warmed over. She’s still walking and moving like I was at Day 3 post-op. This is because there was so much trouble during her surgery to clean everything out, that she had to have the equivalent of a C-section. =(

I placed myself on call to help her with anything she needs this week leading up to the wedding next Saturday.

While we walked around the venue and discussed things, the pain began to set back in for me. I and another friend had to sit down for a few minutes - yet another friend who has menstrual pain, on top of chronic pain from two bulging disks in her back, spinal stenosis, and antereolysthesis. Between her, me and our friend who just came through a partial hysterectomy, the wedding party seems full of broken birds. We chuckle at it and go on with our bad selves. What else can we do?

When we finished with our meeting, the pelvic pain was getting to be too much for my friend G and I - mostly because we also had to go to the bathroom really bad. We had all driven separately, so took off on our own separate ways. My husband drove us down to Mariposa Bakery, which is a completely gluten-free bakery. It was my treat for making it through another month in the Underworld…and I got to use the bathroom. It was there I discovered I had started bleeding again. I was not happy about this. Thankfully, though, the pain never got above a 4 on the pain scale.

I bought us two cake doughnuts, a cupcake for the husband, and a pumpkin spice muffin for myself. We both didn’t care for the cake doughnuts. But ah well, it was worth the try! I haven’t had doughnuts in *years*.

We also got some coffee. Yeah yeah, I know, this is all bad - sugar and coffee and baked goods and whatnot. All inflammatory food. I was already bleeding and in pain to begin with, and had been for days, so I was well into “who cares” territory.

All yesterday it was hard for me to move without grunting because my body was so stiff. I started to loosen up by evening, thankfully. Also thankfully, the bleeding had stopped again, and I didn’t even need to wear a pad by evening.

However, by this morning, I was back to being super stiff and sore again. I partly blame this on the fact that we had moderate rainfall overnight, which has continued on and off throughout today.

I was alarmed to find that I had resumed bleeding by 9am this morning. I was furious, because this is Day 5 - after three days in a row of bleeding fully stopping. GAHHH so today I’m back to feeling super tired and run down, and every joint in my body is aching and stiff, and I’m having to wear a pad again. The bleeding is light, but it should be NOTHING by now.
The pelvic cramps are sharp and intermittent, and centered in the low uterus.

In spite of that, I went to my regularly scheduled Alexander Technique class at the dispensary today. I’m glad I went. When I got back home, I needed a rest, but now I am going to try to get on with my Sunday. There’s chores and homework to do for the coming work week. I will emerge fully from the Underworld by no later than Monday night. I decree it so!

This morning was Staff Development Day at work. It consists of all-day meetings and guest speakers and whatnot. I am still ill but was expected to show up. I wore the loosest fitting slacks I could find, and a sweater. The idea of sitting in a metal chair all day made me wince, but I needed to at least try.

The pain and bleeding had abated overnight, and I was down to a minimal pink flow - almost spotting, when I woke this morning. But I knew that wouldn’t last long.

I packed my heating pad, some extra cloth pads and my medication, popped 600mg Advil, and off I went.

I lasted an hour before the pain and bleeding ramped up again (about 9:30am).

The first inkling I had of renewed pain was actually anal pain while I sat in the metal chair. Even though I had a chair pad, I was very uncomfortable. When I stood up with everyone to go outside, I felt weak. As I watched my co-workers do a music and movement routine outside, the menstrual flow returned. I slowly made my way to the bathroom, and chuckled to myself as a very pregnant co-worker waddled hurriedly past me. She’s in her last month and has to go to the bathroom all the time. I had a mock image in my head of me and her fighting for the bathroom. Ahh, it’s the dark humour that sees me through…

The pain continued to ramp up as I waited for the bathroom. I could wait no longer, so I shuffled to the other bathroom in the building. Yep, super red flow and clots had returned, and I felt I still had a much bigger one yet to pass. I took a full Tylenol 3 plus 400mg Advil, and waffled on whether to just leave work right then or try to hang on and make it through the guest speaker’s presentation.

That’s when the director saw me and asked gently if I could try to make it through the guest speaker’s presentation. So that was my decision. I heated up my corn heating pad and sat back down. I knew that by staying, I’d be toughing out the pain til the meds kicked in. I knew that by staying til the pain meds kicked in, that I’d be too medicated to drive anywhere for awhile. I knew that by being on an entire Tylenol 3, I’d become very sleepy. But I chose to stay, because I knew that there were still two meetings to get through today after the presentation.

Well, the presentation lasted til 11:30am. The director told me it was okay to go home, but I was far too stoned on meds by this point to make rational decisions anymore. I hung out for a bit, hoping that the Internship teacher would be speaking, soon, but the wrap-up from the directors on the guest speaker took a half an hour. During this wrap-up time, I sat by the front door of the school, then moved to the library of the school and snoozed on a pillow chair. The whole time, I was within earshot of the wrap-up commentary by the directors, so I was still there in attendance, just not in the same room with my co-workers.

When everyone was dismissed to lunch at noon, I found my head teachers, my afternoon supervisor and my internship teacher, and got whatever notes and details I could from them about the meetings I would be missing this afternoon. Everyone was understanding and said it was okay for me to go home. I was wavering on my feet, after all.

The pain was dissociated enough by this time that I was able to drive home, even though it was too bright outside and my eyes hurt (thanks to the Tylenol 3).
I only live a mile from the school, but it was a grueling mile to drive when so medicated and brightly lit outside.
But I made it home safely.

I got in the door, changed into my jammies, and crawled into bed. My husband is thankfully working from home today, so he went out on his lunch hour and brought us back some Thai food.
I ate half of my meal, then tried to crawl back into bed, but the pain was returning again. It had been nearly four hours since my last dose of Tylenol 3, so the pain was already leaking through again.

I took my second full Tylenol 3 of the day, tried to crawl back into bed again, and could not get comfortable.

This afternoon is officially the part of my cycle where everything is annoying and uncomfortable and I’m just DONE with dealing with the endometriosis.

Part of it is because I didn’t see the warm sunny days for the past three days. Part of it is because no matter how much time I’ve spent in bed, my body is still unable to hold itself upright for too long. My back aches from all the laying around, and yet I can do little else but lay around. And part of the frustration and annoyance is due to all of the codeine I’ve ingested over the past three days - it’s definitely a CNS depressant, and it does make me super grouchy every month after I’ve been on it for two days.

I hate this part of the cycle, because I turn into a three-year-old and can’t use my words. I huff and puff and growl and cry out ARRRRGGGGHHHH!!!! a lot.

This too shall pass.

If you think that’s bad, you should see me on morphine. Not looking forward to *that* hangover after my second surgery in December.

Two last things I want to touch on before I sign off:

Diet - I’ve caved in and have eaten a lot of chocolate in the past seven days. Chocolate is BAD BAD BAD for me. But I keep rebelling, and I keep demanding a play-by-play of how chocolate affects one’s brain and hormonal chemistry. I once got a play-by-play on what happens to one’s body when one drinks Coke. I would love to see the same thing written up for chocolate. Anyone stumble across it? Let me know! Because until I read it, I know myself well enough to know I will still rebel and eat chocolate.

Pain Management - I’ve been going to an Alexander Technique class as often as I can for the past four months. While it does not help immediately relieve my pain of endometriosis, I am convinced that in the long term, applying this technique will do wonders for my pain management overall.

I have not gone to the acupuncturist since July. I simply could not afford her anymore, and my husband is very skeptical that acupuncture works at all, so he’s reluctant to pay for weekly or biweekly sessions. The Alexander Technique, on the other hand, is offered for free through a Prop 215 dispensary near our home.

As far as any other pain management for “in-the-moment” pain, I have lapsed. I really need a devoted teacher to train me in the ways of mindful meditation and progressive relaxation. But again, those classes were unaffordable, because our insurance would not cover the classes through UCSF, where I’ll be getting my surgery in December. They were billed as psychiatry instead of pain management, and so they were considered out of network, because there are only certain psychiatric providers I can see under our health insurance. It makes absolutely no sense to me at all. :(

I noticed today at work that my breathing came in short bursts because I was hunched over my heating pad in the chair, with every muscle tensed in the moment of pain. I tried to sit up straight to open my lungs and draw some air, but it hurt so much that I hunched over again. Being at home on my yoga mat or in my bed allows me the proper comfortable time and space to do my breathing exercises, but out in public, I just want to roll into a ball and disappear. That is what I noticed today.

I’m sad to not be participating in the staff meetings and classroom cleanup today. But I am, at the same time, much happier to be at home where I can allow the pain to BE what it is, and I can freely express how I feel about being in pain within the safety of my own home.

I now have the weekend to recover, and Monday will start a new work week, hopefully with energy restored by then.

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.