I Will Not Suffer In Silence

Holy Moly, how did we roll into another year already?!?

Rather than chronicling all the bad stuff, let’s catch you up on some good things:

My uptime (no endo pain) began on December 14, and continued for 15 days!
December 22 was the last day of work for the winter break, and I got to spend good quality time with my husband and our local friends. I don’t normally celebrate winter holidays with family, because I live clear across the country from them, but I did get to talk to my family by phone. I even got to attend a party with my Michigan friends via Skype!

 
Giftmas, as I call it, was happily low-key. I am quite loved by my students and workplace, as there were a great many gift cards, hand-made gifts, and other wonders! From the gift cards, I received a bounty of new books to read. My husband got me a digital EMF detector, because I like to ghost-hunt, and because I’m also sensitive to EMF, so reducing it or avoiding it early and often is key for my well-being!

We spent Dec. 25 at a friend’s house; they are like family, so it is a relaxing, cozy environment. We went dancing on Dec. 26, and for New Year’s Eve, we went to two local bars to celebrate with friends and acquaintances.

 
My husband and I also watched a lot of Rome - an HBO miniseries. Our friend loaned it to us on DVD and we’ve been enjoying the hell out of it. I’m a bit of a history nerd, so we’ve been watching the series with the historical captions function activated. :)

During the endo uptime…actually from day 1 of the endo uptime…the discs in my neck pinched a nerve, and I have been dealing with that since December 14. It was the second time in a month that the discs pinched on a nerve in my neck; the same happened back on November 20, but the pain only lasted 3 days before righting itself. The pain this time was so bad for so long, that I missed 3 days of work. I spent all of winter break moderately to heavily medicated on muscle relaxers, Tylenol 3 and Advil. The doctor wants to do cortisone injections, which I put on hold until I got the results back from allergy patch tests to see if I have a sensitivity to cortisoids (I don’t, according to the patch test). My Ma had a really bad experience with cortisone treatment, and she and I are both highly allergic to penicillin. Because I share similar allergies to hers, I wanted to be tested before undergoing further treatment.

The joke during this time was that although I had pain, it was nothing compared to the endo pain!!

Excerpt from Facebook:
Definition of stubborn: driving self to doctor & errands on Tylenol 3 & Soma (pinched nerve is worse after trying new neck pillow). HEY, this is nothing compared to endometriosis pain! lulz
-December 30, 2011 at 1:05pm

I’d love to have muscle relaxers for each endo flare, too, but A) they’re addictive and B) they make me fat and depressed, so I usually steer clear of muscle relaxers unless the discs act up.

Of course, now that I’m cleared for cortisone injections, my neck decided to ease up! It was the longest period of time that I can recall pinched nerve activity. It was pretty brutal.

On Dec. 26 and Dec. 31, I wore eyeliner when I went out with friends, but for some reason, my eye hated the same eyeliner on NYE. Two days later - that’s today - I developed pink eye. It’s the SIXTH TIME since October 3, 2011 that I’ve had pink eye, all of which started around the time I began using Maybelline Great Lash mascara. I got a chemical and environmental allergy panel done at the end of December, and it did come back as suspect for sensitivity/allergy to cosmetics ingredients. I say suspect, because one doctor said YES it’s positive, and one doctor and one nurse said NO, it’s inconclusive. Damned doctors. No, of course there was no blood test - only skin patch test.

 
So although I’ve been sick with one thing or another throughout December, I am still happy to report 16 days of consecutive uptime between menstrual cycles. There is positivity in there, I swear!

I also went to the dispensary during winter break, which has become famous overnight, as it’s now part of a television series called Weed Wars. I re-signed up for acupuncture, reiki, chiropractic, yoga and the alexander technique. Most of these services are now experiencing a 3 month wait due to recent fame for the dispensary, and of course it’s wall-to-wall people at all hours, now. I’m really happy for the dispensary, and also feeling a bit selfish for wanting services sooner. ;)

I will finish my New Year’s entry with a list of goals for 2012:

• Go sugar-free again.
• Do a better job from abstaining from alcohol again (I know, that few-times-a-week glass of wine is awesome tasting and relaxing, but may not be doing your cramps any good!)
• Be serious about gluten-free baking at home, so I cut down on processed foods.
• Start biking to work every day again.
• Start posting more positive entries - what I can do, as opposed to what my limitations are. It doesn’t have to be one or the other, but just not all negative chronicling all the time.
• See if I can manifest the idea I had recently to gift fellow endo sisters, to share positivity and love.

(Reposted from Facebook)

 
December 10, 2011 at 8:11pm via mobile
Spent the day drugged to the gills on Tylenol 3, but at a friend’s house playing my first ever Call of Cthulhu game. Bonus - one of the gamers is an acupuncturist who did some work on me during game!
It’s pretty awesome when your friends allow you to play the game while doing various pain management stretches and maneuvers. The lady of the house even had a heating pad for me! ♥

 
December 11, 2011 at 12:36pm
Yesterday after gaming with friends, my husband drove me to my tattoo consultation. Still drugged with pain meds, I walked baby steps from the car to the tattoo parlour. The tattoo artist and I discussed the piece and made some changes, and then I bought a pair of wooden earrings. I’ve been wanting to change out all my jewelry from metal and plastic to natural wood and stone jewelry. One of the women at the shop misjudged my earring size, and I ended up with a stretch nearly a gauge in size. I was about 6ga - she took me to 4ga when she put the wooden earrings in. However, the resulting endorphin rush had a positive effect on my endometriosis pain…as in it nullified it for a couple of hours!

YAY!!! I was even able to walk up a San Francisco hill to get back to the car. Holy crap, you have no idea how cool that was. I should do endorphin pain management as endo treatment every month.

 
December 11, 2011 at 3:57pm
(Attempting to keep some positive thought up)…

Something that I have done which you may not have:

I have ridden on a donkey in a Bedouin village near Netanya, Israel.

Last night, I developed uterine cramps after eating pasta alfredo with Langostina tails for dinner.
I also had a cup of caffeinated tea with dinner. The pain started on the way to a concert, and got worse throughout the night. Standing or sitting did not matter, the nerve pain stung and radiated from the uterus, settling in the lower back, causing debilitating pain by the time I left the Peter Murphy concert. I descended the stairs of the concert venue slowly, wincing with each step, clutching the railing.

By the time I got to the bottom of the stairs and was out on the street after the concert, I was nauseated from the pain. On the way home, every time the gravity changed in the car (turns, changing lanes, curving highway), the inflamed nerves screamed, and I cried out in pain.

However, once I got home, I refused to take meds, because I wondered if it was my kidneys acting up. Other organs are easily afflicted by endometriosis, and if the kidneys were suffering, then adding pain meds might make things even harder on me to process. Instead, I used an exterior pain relief gel, and did some Chi Nei Tsang around my pelvic cradle to see where the pain was coming from, and how it was radiating out.

Though the stinging, burning nerve pain felt like it was in the sides of my pelvic bones, in my lower spine and radiating down my legs, the Chi Nei Tsang helped me realise that the originating source of the pain was actually in the uterus. It was so inflamed that the nerves broadcasted a pain party to the entire pelvic cradle. It grabbed hold of the trunk of nerves in the pelvic cradle and shot down the sides of my legs, almost to my knees.

The pain relief gel comes from NationalAllergy.com, and it is called Super Blue. I rubbed that on my lower back, and then situated a heating pad over my pelvis.
Further, I moved my body slowly to figure out the best position for rest. It was one of those times where I wished I had my old futon mattress again, because our bed was far too soft given the level of pain I was in.

Last weekend, I had developed pelvic pain on three occasions right after drinking coffee, so I have since gone back to drinking caffeinated tea, and only in moderation; one cup at a time, and not every day. I had not recently developed pelvic pain with the tea, so I’m suspecting the langostino shellfish as the culprit to my pain. Shellfish is said to contain lots of dioxins, which feeds endometriosis growth and flaring, though there has not been any in-depth studies that I know of to show you to prove this. It’s just one of those things that I know to be a solid suspect, based upon my pain history when consuming shellfish, especially at or near my cycle.

This morning, I am running late for work, and the stinging pain resumed once I crawled out of bed. I will be taking 800mg of Advil gelcaps to get through the day. I am two to three days away from the onset of my next cycle; george will be here by Wednesday or Thursday, in time to ruin weekend plans. However, I have a consultation with a tattoo artist about a design I want on my upper back, so I plan to be there, drugged to the gills or not.

During this month’s uptime, I accomplished the following through the Prop 215 dispensary:

• Attended two Alexander Technique weekly classes.
• Attended one Iyengar Yoga weekly class (I would have gone to a second class but work held me over)
• Got free acupuncture

 
During this month’s uptime, I accomplished the following:

• spent several hours aboard the U.S.S. Hornet walking around, ascending and descending stairs, and sitting on hard floors
• attended two going-away parties back to back
• got reeeeeeeally drunk
• went to the circus for father-in-law’s birthday request
• bicycled to work three days in a row, for a total of 8 miles
• went for walks
• continued my yoga lessons nearly every night before bed
• helped pack away a classroom of its summer theme and helped prep it and another classroom for the coming school year

 
Along with the getting drunk part, I also ingested more caffeine and more sugar than I should have allowed myself to do. I felt stressed out this whole month. My sister-in-law was hospitalised with a pulmonary embolism (she’s now home and managing it with medication), and the aftermath of my drunkening had me seriously in the doghouse with my husband, and had me feeling very depressed for a whole week. Oh, and both of these things happened the same exact week. Being on the U.S.S. Hornet was draining, because it required heightened psychic sense (we were ghost hunting), and there was some national news that triggered me emotionally (also in the same week as my sister-in-law’s hospitalisation). The week of August 14 - 20 was a really bad week.

Despite the emotional roller coaster, I experienced SIXTEEN, count ‘em 16 pain-free days in a row! Sixteen consecutive pain-free days!

WOW! I definitely have a trend showing itself five months after surgery!
From May to June’s cycle, I had 20 consecutive pain-free days.
From June to July’s cycle, I had 17 consecutive pain-free days.
From July to August’s cycle, I’ve had 16 consecutive pain-free days.

This is AWESOME.

What’s even better is that no matter what I’ve done to myself diet-wise, the number of pain-free days has barely wavered. Not that I’m gonna go on a booze, caffeine and sugar binge from here on out, mind you. That shit still affects my mood something fierce.

I will say that this month’s PMS has been HELLISH. Perhaps that is tied to the poor diet. I’m angsty, depressed, angry, weepy, and desirous to claw myself out of my own skin. I feel like a three-year-old who can’t tell you what the trouble is and who resorts to screaming and kicking everything in site.

The libido thing is about the same as it is for many women with endometriosis - I enjoyed three intimate days this entire month. There were three in July, two in June, one in May, two in April, two in March, FOUR in February, and three in January. None of that has changed much since surgery, because due to endometriosis, I’m also diagnosed with dyspareunia, which happens with deep penetration. The cramps can often last for days, and the deep cramps not something I want happening between cycles, during my “uptime” or my sacred pain-free time zone. Thankfully, truly thankfully, I have a life partner who understands and respects this, as rough as it can be emotionally for him to have to deal with on his end. My husband is a super hero. We’ve been together for 11 years, and have been married for almost three. :)

I fear today may be my last day of work before I’m stuck at home in pain again for a day or three. I’m hoping I won’t miss work at all this week. On Monday, I required 600mg of Ibuprofen to get through the workday. On Tuesday, I required 1,000mg of Ibuprofen. Both days, I woke up feeling like a Mack truck ran over me. My muscles have been tired, my joints have been aching. I have increased my calcium/magnesium intake, and I’m trying to add more green vegetables to my diet for iron. I should be taking my iron supplement - I’ll do that at lunch today.
So far today - Wednesday - I have not needed to take ibuprofen. I’m heading off to work right now. Wish me luck!

My Prop 215 card expired in July, and I finally scraped up the money to renew it so I could start up the pain-management services again. I saw Dr. Ellis last weekend and paid the $135 to renew my prescription for another year. He asked me if I’ve had any adverse reactions to the medical marijuana, and I told him again about my reaction to trying out CBD.

Dr. Ellis replied that I should not be renewing my Prop 215 card at all, then, and he’d like to make the recommendation in my file that I quit ASAP. I told him that it’s not the medical marijuana I’m after - I haven’t had any in a year. What I’m after are the free pain-management services that come with having a Prop 215 card. I told him that since April, 2011, I have been without health insurance (my husband’s job downsized in December, but continued to give us health benefits until April).

Dr. Ellis understood my request and wrote down in my file that I react adversely to any form of marijuana, but that I may continue to renew my card for dispensary services and discounts. Yay! That’s all I wanted, so I’m a happy camper.

I also filed a name change. I’ve been married for three years but just got off my lazy ass to do the name change this year. After my appointment with Dr. Ellis, I phoned up my local dispensary and made an appointment for the Alexander Technique.

The next day, at the dispensary however, they could not process my name change (some company they had to call was not open that day - maybe it was Dr. Ellis himself), so I simply rescheduled it for today. My name change was processed on Monday and so today I was able to go to the class. The instructor I saw last summer is still there, and remembered me and the illness I suffer from. I received a warm welcome and had a good class with three other students, one of whom I also remember from last summer. :)

The dispensary also offers yoga, chiropractic, reiki, naturopathy, acupuncture and hypnotherapy. I’m going to try to get in on the yoga, chiropractic and acupuncture classes, since they are offered after work hours.
I’d love to go to the reiki and hypnotherapy classes; alas, they happen during work hours.

I am due on August 31st but have not had any mittelschmerz or other pelvic pain since my last cycle ended. I made it through the day of work on August 10 and so the clock was set for uptime.
While I have not utilised my uptime to its fullest this time around, by getting back into the swing of pain management, I feel that I still can do a lot before the next cycle. :)

Well I’ve been meaning to keep you updated - and myself for that matter - on the progress and setbacks as each month post-op goes by.

However, I’m nearing the end of a teaching certificate program, and I’m working full time as an intern teacher, so I’ve had very little time to spend thinking about long narration of my menstrual woes.

I’m due on Sunday.

Parent observation week at school is next week. I’ll likely be out at least a day due to the pain. :(

I’m still missing 1-2 days of work each month, but it’s better than 3-4 days each month.

I’m under a lot of stress with this internship and trying to graduate a preschool class, take care of a stressed out head teacher, and get my thesis written and presented.

I tried using a progesterone cream for pain management on May 15, and within 6 hours I was a mental wreck. I’m putting off further experimentation with it until after graduation.

I’m back to the usual PMS cravings from all the stress. Been eating cheetos and chocolate again, and drinking more caffeine. Of course this ups the inflammation, I know.

That’s all I have time to say here today. Wheeeee.

The last day of george was February 13. There had been nearly no bleeding overnight from the 12th to the 13th, and then the cramps and bleeding ramped up by 9:30am.
I still went out of the house despite the pain, and an acquaintance helped me return the rental car I’d gotten for the weekend seminar. I came home and took a whole Tylenol 3. The pain radiated down the inner side of my thighs almost to my knees. I was nauseous. The pain reached 7.5 on the pain scale.

This of course proved to be the “last gasp” as we call it - the bleeding and pain abated by late afternoon and then I spotted on the 14th and 15th.

The good news of the February menstrual cycle is that I was not bedridden at all!
The bad news of the February menstrual cycle is that had the pain struck me on a week day as opposed to the weekend, I still would have missed two days of work, because the pain was above a 6 on the pain scale and required narcotic medication to treat.

Eight days later, like clockwork, mittelschmerz (mid-cycle pain, a.k.a. ovulation) occurred and lasted for two days. The symptoms consisted of sharp, intermittent stabbing pain in the uterus and left ovary (that damned left ovary!!!), which lasted for hours. On February 22, I took half a Tylenol 3 before bed. On February 23, I took 600mg of Ibuprofen before bed. The pain lessened but was still present (less stabby) on February 24 (today). It’s difficult for me to know if the pain would have been less sharp, because on February 21 and 22, I was intimate with my husband (funny how ovulation and an increase in libido happen at the same time, huh? ;). It could be the dyspareunia OR the mittelschmerz OR both. I’m special that way.

So the bad news is:

• The pain still got to 7.5 on the pain scale, which is unacceptable.
• I continue to have mittelschmerz.
• I continue to have dyspareunia.

Still, I am excited about what promise the March menstrual cycle holds. Each month my body recovers from surgery means hope that the really bad pain has been ameliorated by surgery. Hope is strong. Only at six months post-op am I allowed to throw in the towel with the hope that surgery worked. I am fully aware of the statistics of actual pain relief amongst endometriosis sufferers with surgery, and by that I mean I know full well that our numbers are low. But I am not one to give up so easily.

I am hoping with this next paycheck on February 26th that I can start up the acupuncture and massage treatments again. My masseuse also has endometriosis. She got a hysterectomy and had no relief even after that! She went to massage school and also had massage therapy on herself. What ultimately helped to relieve her pain was PUSH therapy. My masseuse is certified in Swedish massage, acupressure, Shiatsu, sports massage, deep tissue massage, reflexology, Dynamic Reposturing, and PUSH Therapy.

I also need to get back on the bicycle again. I’ve been a weather wuss, which is hilarious because when I lived in Michigan, I bicycled in 48°F weather all the time. The rain is another issue, I have never liked to bicycle in the rain.

Challenges to continue working on: omit alcohol, sugar and chocolate intake entirely.

So what I’ve been doing is keeping a running log of tidbits from my day, thinking that later each day, I would expound further and make a good narrative journal entry for you. And then it wouldn’t happen. So the next day, I’d type up some tidbits from that day, hoping to put it in more readable narrative…etc. And what you get instead is me being way behind and playing catch up.

Day 45
Monday, January 31, 2011
Day 5 of my return to work. I don’t recall the order of the day. The big news that day happened when we got home and got a call from my husband’s step-mother, saying his dad was in the hospital again due to complications from Type II Diabetes. His left foot had swelled up, and he had to have his left big toe amputated. Now he has no more big toes. His right toe was amputated back in July, 2005.

My husband endured a long rant from his step-mother, and looked depressed when the call ended. He said, “I seriously wonder if he’ll be able to ever walk again after this.”

That’s not all - father’s wife is screaming divorce because she’s tired of him not taking care of himself. It’s been going on for over 20 years.

Day 46
Tuesday, February 1, 2011
Day 6 of my return to work. I wore slacks again, and no, the belly button wasn’t any happier - 46 days after surgery!!!

I was stressed out at work, and had little water intake because I forgot to take my water bottle to work with me, and it was my first day of recording the childrens’ work. Recording entails walking around the classroom with a clipboard and noting what the children are working on, checking their work with a Three Period Lesson, and noting on the clipboard next the activity whether the child has mastered it, needs to redo it, or is just having a sensorial experience with it.
The class usually has 20 children, and at any time, three or four of them are tapping me on the shoulder or arm while I sit with another child, or they’re calling out across the room when they’re not supposed to. Then there’s four to six children playing instead of working at any given time, whom I have to continually resettle. It was a very busy day.

That night, we visited my husband’s father in the hospital.
I experienced sharp ovarian pain on the right side as we walked down the corridor to my father-in-law’s hospital room - this was after climbing stairs - and I had just told my husband that I was fine to climb stairs, since I had been active at work.
It’s a workout to do Head, Shoulders Knees And Toes every day, along with squatting down and getting back up again several times a day to check children’s work…in Montessori, many children work with materials on the floor.

We visited probably for an hour, and my husband’s father seemed not to be too put out that he’d just lost his other big toe. He talked about the trip to Alaska he wants to take this year, and refused to discuss serious matters of his health - you know - reality.

When we got back home from visiting my father-in-law in the hospital, I mentioned online about my crazy mood swings I’ve been having since surgery, and an endo sister suggested I try taking Zomig. I don’t have any Zomig, but it does have the ingredient 5-HT in it. I took a 5-HTP supplement, instead.

Within an hour, my tummy was burning and nauseous, and I had moderate indigestion all the way up the esophagus.

Note to self: 5HTP contains sulfites and B vitamins. You know you can’t take B vitamins because it upsets your tummy.

I took a shower, and discovered that the first scab had fallen out. It looks burnt to a crisp, just like last time. My scabs didn’t fall out til around Day 61 last time.

Right before bed, I experienced sharp pain towards the left side - it was more uterine in nature this time.

So, now I have to go back on what I said in my last post - I had said I did not experience Mittelschmerz, but actually, I think it was just a bit late - Day 10 of the new cycle instead of Day 8.

Yeah. I still get Mittelschmerz. :(

Day 47
Wednesday, February 2, 2011
Day 7 of my return to work. It was my second day of recording the students as they worked, and I was still running around all frazzled, trying to keep up. No pain that I can remember - no notes about pain so I must have had a pain-free day!

Day 48
Thursday, February 3, 2011
Day 8 of my return back to work. We had Chinese New Year celebrations and only half an hour of work period, but I recorded what I could for the head teacher. I came home from a good day at work but the moment I got home, I was full of angst the likes I haven’t seen since I was in my early 20s.

I realised that it is because I am sick to death of LOOKING and DRESSING like a preschool teacher five days a week, and coming home every day with songs from The Wiggles or Dora or some such stuck in my head. I also realised I was PMSing.

Day 49
Friday, February 4, 2011
Day 9 of my return back to work. It was my last day shadowing the person who is leaving that room to work in the classroom I was moved from.

That night, I went dancing! I wore a corset! Sadly, no pix. My husband is really bad about that, and well he’s been depressed about his dad being in the hospital. That night, I blew out my right knee while dancing, and had to ice it right there in the club. The staff were FANTASTIC about coming to my aid - they didn’t have to do that but they did. To my fellow endo sisters, I know you understand when I say the blown out knee pain was HILARIOUS compared to what we normally go through. I iced it for a bit and went back dancing!

I must note for posterity that I did drink alcohol that night. Alcohol is known to be a bad actor for endometriosis, so it’s something I need to stop consuming. I struggle with this.

Day 50
Saturday, February 5, 2011
Sharp right knee pain. I got up after only 6 hours or so of sleep and went to have my blood drawn again (still dealing with follow-up to Dec. 28 high eosinophil crap). From there, I went over to a sports shop and bought another knee brace. ACE bandages don’t take care of the pain anymore - I have congenitally misaligned knees, so over the years, the pain has just gotten more annoying. Stretchy knee braces don’t take care of the pain anymore, either. So I bought a cool knee brace with hinges. It worked superb! I wore it all day and my knee felt SO MUCH BETTER by the end of the day!

And then the depressing news - I also experienced sharp pain on my left side - ovarian area - after eating breakfast (frozen mango, frozen banana, goat milk yoghurt, gluten-free vanilla extract, cardamom, cinnamon for a nice smoothie, and two gluten-free waffles with cream cheese).

Meh.

Day 51
Sunday, February 6, 2011
Intimacy with husband the night before resulted in pelvic pain that morning. We’re not doing anything fancy or kinky, mind you, and I’m still getting pain pretty much every time. I was told by my last surgeon that surgery won’t change that - I have dyspareunia and that’s just how it is. I had asked my current surgeon to please fix my retroverted uterus during the December surgery, as I’m convinced that it accounts for the dyspareunia and for some of the pelvic pain during menstruation, but she said there’s no easy fix to a life-long retroverted uterus. She said that the tendons or whatever it is that connects the uterus to the bladder and other organs would become to strained or weakened if she lifted the uterus up and clamped it into proper positioning. She said it would result in even more pain for me. I have to trust her on that, since she’s performed hundreds of surgeries for endometriosis and pelvic conditions. She’s probably seen the gamut.

The day started off great - I woke before the alarm, ate breakfast, showered, and went to my Alexander Technique class. The panic attack wanted to happen the moment I drove off towards the appointment.
WHY.
My hands were shaking. I couldn’t breathe. I felt the flutter in my throat. I took .5mg lorazepam on the way to class, and when I got out of my car, I thought for sure I was going to faint, so I took another .5mg lorazepam.
I got to my class and was the only one for a bit. I was honest with my instructor that I was not emotionally well grounded that day for some reason. Class began, and two more filtered in and joined the conversation - all of us regulars - all people I’m comfortable with. Then halfway through the class, a staff member opens the door and asks if a new patient could be admitted to class. This is where the session went downhill. This woman made the conversation all about her, and was verbally defiant and combative the entire time with the instructor. The other three of us may as well have ceased to exist. I began doing my breathing exerises. I dissociated and put myself into a fixed state, staring down my nose at the floor, just focusing on breathing so I would not have a panic attack and lash out at this horrible beastly woman who kept saying, “I can’t do this. I can’t do that. I want you to teach me how to properly sit so I can play flute and not be in pain. I can’t do what you are asking me to do. I want you to help me.”

Back and forth. UGH.

When the class ended, I bolted.

I got home and locked my keys in my car, I was so frazzled after that class. I mailed two bills by walking to the mailbox on the corner, came home, and my husband gave me a spare key to go get my keys out of my car.

I got back home and started sorting laundry. I left the room to go through my closet to double-check whether more clothes need to be pared down, came back to the living room, and saw my cat actively sniffing around on the laundry piles on the floor. This cat has a bad history of peeing on my stuff since November 2009 so my heart sank. I knelt down and began to go methodically through my clothes. I found four pair of underwear and a work shirt, all damp from my cat having just peed on them. WHY. WHY.

My husband guessed that perhaps we’re not keeping the litter box clean enough again. This was all I could take for the day, and I feel immediately into a black depression. My posture slumped. My face fell. My eyes glazed over. It was 72F outside for an unseasonably warm February weekend, and emotionally, I was not up to it.

After I threw away the underwear and shirt, I bagged up the remaining laundry and took it out back to the laundry room. Then I took some crocheted blankets (two are from a thrift store, and one is from a friend) to the laundrymat because I like the front loader machines better for such delicate washing. I tossed in some scarves and my Dickens Fair skirt I had made in 2009 and had worn again in 2010.

When I returned to the laundrymat to retrieve my items, I found that everything reeked of mothball.

WHY!   WHAT THE HELL!   HOW DID THIS HAPPEN?   Was it one of the thrift blankets? Was it the washer I chose?
I hung up all my items when I got home. Airing out was good enough for most of the items, but a scarf and a thrift store blanket still reeked horribly, so I washed them twice by hand with baking soda, vinegar and oxobrite cleaner.

I had already been deeply depressed over my cat peeing on my stuff again, and then the mothball chemical assault happened. I’ve refused to eat or do homework all day. I did another load of laundry here at the house, but that was it. Even as I sat here typing this out, I was hunched over. My stomach was hurting. I wanted to sleep. I wanted to just go away.

8:19pm update:
I think I got the mothball smell out of everything except for our tartan scarf. :( I’ll keep trying at that before giving up, though.
There are two culprits now - the green crocheted blanket I got from the thrift store, and the purple microfiber blanket I just bought from the neighbor last night. Two different smells at that! The green one is the mothball and the purple one smells like a dog or cat had urinated on it at some point and it was incorrectly washed and dried. This makes a good argument for me never getting thrift store or yard sale blankets ever again.
I’m wondering how sick I’ll become now that I’ve exposed myself to nasty mothball fumes all day. One day I’ll learn to just flee the situation or throw the offending items away instead of trying to save things. ugh.

Day 52
Monday, February 7, 2011
Continued pelvic pain from late Saturday night’s intimacy.
Lots of intestinal gas noises, and pressure on the low back extending to rectum. This is “normal” pre-menstrual activity. Alas.
I awoke around 4am and finally got up to use the bathroom around 4:30am. I took .5mg lorazepam. I was never able to get back to true sleep after that. I hit snooze on the alarm four times, being stubborn about getting out of bed. I was exhausted and I still had a whole day ahead of me.

I got through the day but had to take 600mg Ibuprofen gel-caps by 9am to get through the day, because of low uterine pain. I seriously had to go check to see if I’d started bleeding, the cramps were strong enough. I’d wager about a 4 on the pain scale.

Postscript:
My first surgery was February 1, 2007 and I never did get any pain relief from that surgery. That’s why I had the second surgery on December 17, 2010. Both surgeries were electrocoagulation type Laparoscopy. I wanted excision surgery this time around, but my surgeon told me that the latest research out there shows that both excision and electrocoagulation have benefit. She prefers electrocoagulation but will not hesitate to do excision where necessary. The bulk of what I ended up “needing” was electrocoagulation, according to my 2010 surgery report.

I am hoping that with each month post-op, the pain relief will increase. That’s where I’m at…

Sunday, January 9, 2011

It was my husband’s 40th birthday, and he had planned to go to breakfast and then wine tasting all day. I had recently gotten news that my car was leaking brake fluid, so the driving was left up to my husband - unless we rented a car for me to drive. Upon checking, none of the car rental places save for the airport were open on a Sunday. I was ready to pursue this angle, but commented that my husband would have to pay for the rental, since I’ve been out of work for almost a month.

His reply was that if it was okay with me, he’d like to take our chances with my car.

I was NOT happy. I protested. I grumbled. I caved in. I remained NOT HAPPY.

I drove him to breakfast, and two friends joined us. I was very delighted to be able to hold down leaded coffee with cream, a scramble consisting of home fries, tomatoes, spinach, green onions and cow’s milk cheese. I also had some sliced bananas to go with the almond-milk vanilla pudding I’d brought with me in the event that I could not eat anything on the menu. Quite a yummy brekkie I had!

The birthday boy surrounded by friends!

The birthday boy with friend and wife!

We sussed out wine tasting route and caravan plans, and off we went. On our way back to the car, my husband stepped in dog poop. To ensure his entire day was not ruined, I took the job of jovial and optimistic and helpful Wife. Sticking his boot in mud encased the poop for the short term, until he could address the issue later. Disaster averted, but ooops, we lost one of our caravan to impatience. We tried to warn her that the first winery was difficult to get to…

As expected, we and our friend who did follow behind us got to the winery with no sign of friend #2.
Good Wife phoned friend #2, who was in an agitated panic over being lost, and calmly guided her to me as I walked perhaps a third of a mile. Once retrieved, I hopped into her car and guided her to the parking lot, allowing her to vent in her red-headed way that I so often do myself (being a red head).
I was even able to convince her, after a few drinks, to join us in my car for further wine tasting. I got my exercise in for sure - getting into and out of my go-kart of a car all day and walking to and from wineries. I was moderately tired all day. The day was beautifully sunny, even though it was still very cold for me. The wind did not help matters. I do not thrive in 50°F weather. I’m comfortable in upper 60s to low 70s. That’s my range.

We didn’t die that day. No brake failure, which of course made me feel SUPER guilty for bailing on my teacher seminar the day before.

Firsts for Day 23:

• I drove my car all day, getting into and out of car repeatedly.
• My face and neck did not rash out with all the red wine and port I was trying, and I had not taken a Benadryl!

Complications:

• I experienced stabbing, searing bladder pain/urgency whenever my bladder was full. This was possibly due to sulfites in the wines I was tasting.
• I was still experiencing loose stool from the previous day’s coconut oil overdose.
• Since I am no longer in continual pain, I forget that there are things I still cannot do without causing pain; jumping, hip-checking car door or the front door to make sure it’s closed.

What I did for pain management was sit down often. I noticed that when standing at a bar, I stand to one side and sort of lean into the bar. Being post-op, this hurt a lot, and yet I could not stop myself from assuming that stance. So I would find a folding chair and sit down away from the bar. This meant I did not get the full range of wine tasting, but I rarely go for the whole range, anyway. I’m very partial to only certain reds.

January Birthday buddies wine tasting as I sit and rest.

After we got back into town and dropped our friend off at her car, we headed home to drop off some goodies my husband had purchased on our wine tasting trip, and then we went out to dinner. We were starving, and to my happy joy, there was something on the menu that I could eat - baked salmon with mashed potatoes and sautéed spinach! It was divine.

Birthday dinner with hubby at Speisekammer

The day ended on a sour note when we arrived home and I went to use the bathroom and stepped in cat pee. I began the usual line of questioning - was it because we had a friend over on Saturday who owns big dogs? Is my cat’s renal condition worsening? Was he mad at us for being gone for long stretches of time over the weekend? Does he have a bladder infection?
Alas. Only thing to do was to clean up the pee and monitor the cat’s behaviour again. Never a happy job. We’d gone weeks before he started up again. It’s always something different it seems.

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.