I Will Not Suffer In Silence

Hey all, just wanted to provide a quick update so I don’t forget. I’ll try to do a more detailed year-in-review in the next month.

I’ve been having a big uptick in pain since September. I hadn’t bled since March, and then spotted for a couple of days in September if I recall.

My contract ended at the end of September and I lost my health insurance, but my awesome primary care doctor (Fredian) wanted to see me anyway and said I could pay installments. She has to see me in order to justify authorizing a refill of Tylenol 3. So today I was able to see the doctor one-on-one in her small family practice. I was the only patient there and she the only doctor. We both had masks due to covid-19 still raging all around us (nearly every state right now has a HUGE spike in cases, bigger than it was back in March/April, because of the sheer volume of covidiots during this entire pandemic), and my doc took my temperature upon entering the building.

She gave me a urine test to rule out bladder infection. No infection, whew! She also tapped on my kidneys. No pain.

Then she did a pelvic exam, and that was excruciating. She says the whole region is still in constant spasm mode, which is consistent with my diagnoses of endometriosis and pelvic floor dysfunction. She recommended an ultrasound to rule out ovarian cysts. I have typically had my worst problem developing ovarian cysts in November. I don’t know what it is about November. She said there was no apparent infection and the cervix looked good, etc. I had to request a pediatric speculum, especially after the digit inspection left me in horrid pain already. Once the speculum exam was over, THEN I started feeling the spasms on the outside, and my lower front uterus was giving me gnawing sharp pains. I described it to my doc and I could tell she was a bit cringed about having caused me pain. She was as gentle as she could be, so I felt bad that she felt bad. She’s one of the best doctors I’ve ever had.

The last time I had in-depth sonograms and MRIs for the pelvic region was last year in Autumn 2019 when I revisited my surgeon (Dr. Giudice), who ruled out endometrial cancer at that time and said based on the images, she suspects the endometriosis has grown back and is likely especially thick in the pouch of douglas again (which also explains my lower back pain and constipation). So, when I get insurance again, I need to go for another round of diagnostics and prepare for the big surgery. But if I can make it to March 2021, then I will be declared officially in menopause, for not having had a regular period in a year.

My goal has always been to get to menopause and see if the endometriosis pain fizzles out. I know it is not a guarantee, but for some people it works. I’m not willing to do any more hormonal treatments due to unlivable side effects, nor am I willing to undergo GnRH treatments which cause bone density loss, when I am already experiencing that just by being a middle aged 10th generation Appalachian (i.e. really wonk genes).

So my options are pain management, pain management and more pain management… And possibly a full hysterectomy… none of that has changed.

I just have to keep going back every year for diagnostics, especially when I experience upticks in pain, to keep ruling out endometrial cancer or torquing cysts. That’s largely what this is all about. Ruling out scary stuff and getting to the finish line.

I took today off work to see my primary doctor and the rheumatologist.

The visit with my regular doctor (April Fredian) went great, and she filled out paperwork so that I can get a blue parking spot placard for my car. I did more bloodwork as we continue to chase and confirm autoimmune symptoms, and I have pending orders to do a sleep study because with all the swelling going on, I also now possibly have sleep apnea.

The visit with the rheumatologist (Felicia Yang) went poorly. She absolutely refused to properly examine me for anything else on the EDS score list, and wouldn’t look at my notes or the photos I had taken of my translucent skin, crepe paper skin, scars and stretch marks as backup.
She very lightly pushed on my fingers and declared I did not meet the Beighton Score, so I glared at her and pushed my thumb to my forearm and cocked back my pinky fingers.
She responded with asking me to touch the floor with my palms without bending my knees, and when I could not, she fucking shrugged and said she could diagnose me with, at the very least, hypermobile EDS but nothing more, and that having it doesn’t make me chronically ill.

She kept insisting that I looked great for my age and am doing well, despite me telling her I am in fact NOT doing well and that it is a struggle to get out of bed and VERY painful to get to and from work each day, and that the whole reason I was sent to her was to get to the bottom of my condition, and she’d already ruled out Fibromyalgia based SOLELY upon the “tender points” test, and ruled out Lupus based upon my bloodwork.
So I fired her and I will start all over again with a more seasoned and professional rheumatologist in a different office. **UPDATE** Scratch that, people on the EDS forums are saying rheumatologists are useless for diagnosing EDS and to see a geneticist. So I’ll work with my general doctor and my insurance to get scheduled with a geneticist.

Regarding the results of the echocardiogram as relates to my heart murmur: both the regular doctor and the rheumatologist explained that everyone has some degree of heart valve regurgitation, and that I fall within the normal bounds of what was observed. However, my regular doctor sees the bigger picture that the rheumatologist does not, and will send me for yearly echos to follow up on my heart, since my regular doctor cared to know that there’s a family history of heart issues on both sides of my family, and I still have unexplained edema going on.

In period / endometriosis news, I finally got my period on January 16 after a 52 day absence, and have been in level 7 or above pain ever since, with continual flooding out and birthing squid and stingray shapes since Friday.

Level 7 endometriosis pain and flooding hit while I was at my primary doctor’s office today, so I popped a Tylenol 3 and ate some food after the visit.
Level 8 endometriosis pain and continued flooding hit right after the rheumatologist visit, and I popped a second Tylenol 3 on the way home. Now I’m home and writing to you from the laptop in bed.

I told both my general doctor and the rheumatologist that my goal is to file for and be awarded federal disability, because I cannot go on commuting to and from work in the continually increasing levels of pain I have been in over the past year. I am fully aware that in the U.S., it now takes a disability lawyer and no less than five denials from the courts before one is awarded disability, so until that time, I will look for ‘work from home’ office work that will pay me enough to continue eeking out an existence. If it comes to the point where I’m facing homelessness over this shit, I’m outta here.

I am in a lot of pain. I hobbled into work this morning because I had a parent conference at 8am. I’m shocked I lasted the entire day…I certainly thought several times to just bail, but I gritted my teeth and hung in there.

On the bus ride home, I felt nauseous because of all of the motion. Just walking from one bus stop to the next across the street felt like a death march because of the pain and nausea.

I have 3 remaining parent conferences tomorrow. The one first thing in the morning has already been rescheduled twice, so I can’t cancel it.

I may just go to work long enough to do the conference, come home, and come back in the afternoon for the other two conferences. Not sure if I’ll be able to stay at work all day tomorrow.

What sucks is having to take a bus to and from work when in so much pain. I thought driving was bad? Try walking three blocks to the bus stop first thing in the morning when the pain is at its worst, then getting on a herky-jerky bus.

As mentioned in my previous post, I have not been bedridden but for one day in…officially five months, now.

I’m enduring a new endometriosis flare, which is why I decided to post to my blog. While not currently bedridden, there is always the chance that the pain will get bad again as the endometriosis continues to grow, so I greet each non-bedridden day with a sigh of relief.

My head teacher is out of work this week with the flu. I had the flu back on February 8th, but Ms. V has it *really* bad. I filled in as head teacher yesterday and today, and will do so again tomorrow, so I’m hoping the pain doesn’t get any worse than it already is (I’m currently about a 6 on the pain scale).

I’m also down to my last few Tylenol 3 pills, so I have to be at a 7 or above on the pain scale before I can justify taking any. I just sent out a request on Facebook for anyone who is willing to score me some Tylenol 1 pills. It’s not Tylenol 3 but it is easier to purchase, especially if one lives in or really close to Canada, where it is sold over the counter.

I was supposed to start seeing a pain management specialist in the fall of last year, but finding out about my husband’s affair ended my rational world, and I could barely keep myself alive, much less pursue time off work for pain management appointments. I’m still in the woods psychologically speaking – the depression comes and goes, taking steep dives regularly but thankfully not every hour of every day anymore (thanks to Gabapentin and Zyprexa and Vitamin D).

I found out that I can remain on his insurance, but do I really want to? It’s just one more thing to keep me tied to him.
If I join my workplace’s health insurance of choice (Kaiser Permanente), I will have to pay a huge co-pay each time I do pain management and doctor appointments, until the deductible is met, and I don’t have the money to do that.

I don’t know which way to go.

As if going through a divorce and still dealing with medical crap, and all the associated medical bills isn’t enough… I had to put my cat to sleep on February 12. Kijika (Kee-yee-kah) had pancreatic cancer which had spread to his liver, and he was already end-stage renal failure. He lived a long life – less than a month shy of age 17 – and I did the best I could for him. I spent two days crying, but I had seen that day coming for nearly three years because of the renal failure, and since last September for sure when he got the cancer diagnosis. I am having him cremated and I will keep his ashes in a cedar box that the Vet is putting together for me.

My girl cat Zenaide (Zeh-nay-ed) has been wandering the house meowing with force, and it’s been driving me crazy. I finally caved in tonight and let her sleep on the bed – something I haven’t done since the last time I lived on my own (back in 2003).

That’s all I’ve got update-wise for now.

As previously mentioned, this is the 5th cycle since surgery. I had three days of cramps leading up to george, who started on time on Friday, April 1st.

I was spotting by the end of the day on Thursday. It increased by Friday morning. I really didn’t want to go to work, but I pushed through the cramps, which were at a 4.5 on the pain scale. I loaded up on 600mg of Ibuprofen, looked up the bus schedule, walked to the corner, and waited for my bus.

The bus passed me, stopping three blocks up. I was so pissed off. I had relied on a local transit planning tool online, and also checked the schedule mounted at the bus stop. After the bus passed me, I looked up nextbus.com and found that there is no longer a stop where I stood. I then remembered that last year, there had been three different cuts to service routes, and I recalled that people were really upset over it. Proposition 22 passed in November, but it was too late by that time – AC Transit had suffered and made cuts before the prop passed.

I wasn’t personally affected by it at the time, because I still had a working car.

I walked back to the house and woke my husband, asking what I should do. I told him I was cramping, so I didn’t want to ride my bike to work. I told him my car is about to die, because it’s sputtering (spark plugs need changing), the exhaust is fubar, the rear brakes are leaking fluid and the drums are fubar, and the alignment is off due to a hit and run while parked last weekend when I was not paying attention to my car because we spent that weekend at the hospital visiting my husband’s father. Oh, and the “check engine” light had just come on this week on top of everything else.
I asked for advice – should I rent a car, take a cab, or did my husband want to drive me to work? And I could then have time to find a bus home later.

My husband said he’d drive me to work, much to my relief.

I got through the work day on only 600mg of Ibuprofen, simply because I was too busy to take more Ibuprofen throughout the day. The good news is that the pain did not ramp up enough for me to say, “Ok stop, I need medication NOW.”
The bad news is that since the pain was merely a 4.5 on the pain scale, that meant it was a continuous low drone of pain throughout the day that I neglected to properly manage. Thus, I made my day rougher than it should have been.

The pain started to ramp up by the end of my work day, and so I was pleased when a co-worker offered me a ride home. She also suffers with chronic pain (Interstitial cystitis) and multiple food and environmental allergies, so we’ve had many conversations, as misery loves company.

I cannot remember what I did when I got home, aside from taking half a Tylenol 3 and more ibuprofen. I think I just sat on the couch in a pain haze.

My husband got home from work a bit earlier than usual, so I thought we were going to the hospital to visit his dad again. Turns out he is just burnt out and wanted to leave work early. I get that. He whisked me off to grocery shopping for junk food, and we went to a friend’s house and hung out for the night.

During that time, I consumed another half Tylenol 3, some wine (yeah bad monkey, so sue me), lots of popcorn, cheese, strawberries and other sundries, and about 3 pints of water. I also had another bronchospasm – I’m still prone to those after getting bronchitis in February. What set me off was her husband having gone downstairs for a smoke and coming back into the house with smoke still on him and in his lungs. UGH. And my inhaler had been emptied the day before, so I had to push through that, too.

So that was Friday.

Saturday, we slept in, and then my husband dropped me off at the BART station, where I took the train to my long-awaited hair appointment (no sitting on the nasty seats this time – I stood and held onto the aluminum poles).

It’s been 3 months since I last saw my awesome hairdresser. It was right after surgery that I saw her, so I was excited to get something new done to my hair. It was my ME day and I wasn’t about to let the pain destroy it!! I popped 600mg Ibuprofen and half a Tylenol 3 and got on the train no problem.

Once I got into big scary San Francisco, however, things changed. Despite having GPS on the iPhone, as well as printed out street maps, I still could not get my bearings once I emerged from the subway BART station. I walked around in circles, trying to find the imaginary bus on California Street.
Within 10 minutes I realised the same thing that happened to me the day before in my hometown was also happening in The City – the buses are on tighter and changed schedules, now. Prop 22 didn’t do a damned thing to change that. GRRRRRRRR.
I called the hair studio and spoke to my hairdresser friend, who guided me to the next street over. I got to Sacramento Street and hopped on the 1. I got to my hair appointment 22 minutes late, but my friend still graciously accepted me and cut my hair exactly as I wanted it.

Before

After!

After :)

The pain had spiked when I sat down for my haircut, and I’d told my friend that I was at a 6 on the pain scale. I had popped another half Tylenol 3 by this time, too.

When my hair was done, my hairdresser instructed me on the best way to get back to the BART station. She suggested that since it was a lovely warm day, that I just walk the one mile back instead of dealing with the fubar bus system. I waffled at first, wondering if the just-recently managed pain would flare again. My hairdresser suggested I just hail a cab if the pain returned. I gave her a hug and set off into the unusually warm San Francisco day.
On the corner, I ducked inside the Out Of The Closet thrift store for a few minutes, before deciding I was far too distracted on the pain meds to pay any real attention to detail, so I set back off again, walking.

A half-mile into my walk, which was thankfully on a slight downhill step, I paused to get some photos of my hair (which you see above). After photoing myself, I felt a presence behind me, so I turned. There was this tall man, standing mere inches from me, and more to the point my backpack on my back. He turned away suddenly and began muttering to himself. He shifted on his feet, stumbled back a few steps, and lingered for a moment, looking at me out the corner of his eye.
I just glared at him, took a “I am going to KICK your ass” stance, and began swinging my very large, wide, heavy aluminum water bottle. He turned on his heel and disappeared around the corner.

This experience of course set off an adrenaline rush, which allowed me to walk the rest of the way to the BART station. When I got on the train, I was exhausted and drip-sweating. I refused to take off my hoodie, though. I stood the whole ride home, preferring to look like a speed freak, drip sweating and darting my eyes around, so people would leave me the hell alone.

When I got off the train, I waited for maybe 10 minutes before my husband arrived to pick me up. I thought I could go home at this point, but he reminded me that we were to visit his dad in the rehab center he’d just been moved to the previous day.

I ate a protein bar, got some hot lemon-ginger brew from the local free-trade coffee and tea house, and popped more ibuprofen, and we set off for the rehab center to visit dad.

Admiring a new iPad

His wife also came to visit him in the rehab center, but left after eating a meal in front of her husband that she knew he a) wanted and b) could not have due to his diabetes restrictions. Her total visit was about half an hour. I wanted to strangle her. But that’s another story for another time.

After a couple of hours, we told dad we’d hunt down his lost glasses at the dialysis center, and then we were off to dinner. The center was closed, so we’ll have to return again next week. We ate some sushi at the local hole-in-the-wall we love so much, and then returned home for the night, where I hung out on the couch with the heating pad, finally.

It was a rough night. I woke several times with gushing and pain. I stained my bed clothes, I am bleeding so heavily. I woke again this morning and had to take 600mg Ibuprofen and half a Tylenol 3 off the bat. I’ve been on the couch with a heating pad the entire time.

No idea what I’ll be able to accomplish today, though we do have to get our taxes done, so I guess I’ll start organising all my schooling receipts.

Today is Day 3 of george, Day 2 of pain at or above 6 on the pain scale, but most importantly, my third cycle where I have not (yet) been bedridden. Hope abounds.

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.

Thursday, January 13, 2011

Every muscle in my stomach felt pulled that day, probably from all the exercise I had since Monday night. I went dancing Monday, I lifted a 19lb box Tuesday, and did leg lifts Tuesday night.
Because of the pain I was in on Wednesday, I barely took any exercise. My left leg had increasing calf pain all day, too. It felt like I pulled a muscle. I realised after analysing it for hours that my calf muscle was strained because while sitting at the kitchen table doing homework the day before, I had been bouncing my leg the entire time.

I spent most of Wednesday in a bad mood. I was pretty sure it was PMS at that point.

On the good news front, I finally got my patient records in the mail. The bad news is that it did not include the original copy of my disability paperwork. I was very angry. I wrestled with the phone tree for Mt. Zion patient records, was transferred over to UCSF patient records, who said they cannot send originals of anything once it goes into patient file, and they referred me back to the assistant surgeon (Dr. Skillern) who put it in my file instead of giving the disability paperwork back to me in the first place. Oh and I love how she blamed my husband for not getting the paperwork while we were in the hospital:

“I spoke with Dr. Skillern regarding your disability form and she said she filled it out and file it in your hospital chart. Per Dr. Skillern she mentioned this to your husband after the surgery. I thought she filed it in your chart for our clinic. This means that you form is in the hospital medical records department. Either you will request a copy of the form from UCSF medical records department or you can send us another blank form and I will have Dr. Skillern fill it out.” (email correspondence w/ one of the nurses on December 23, 2010).

You know, obviously it’s my husband’s fault, because he did not have enough on his plate already with his wife having gone through surgery with complications, having to be admitted overnight, and he had perhaps 2 hours sleep the night before my surgery due to nerves, and he had to drive home and come back the next day, again on very little sleep, with the urgent notice that my red blood cell count had taken a dive and that I might need blood transfusions or more surgery. CLEARLY it is his fault for not recalling that Dr. Skillern mentioned to him that my disability paperwork was in my patient file and to retrieve it before we left the hospital. OBVIOUSLY Dr. Skillern was far too busy to just set the fracking paperwork on the table next to my hospital bed, and instead had to go the long way around, like she always does.

Had I mentioned how angry I was on Day 27 post-op?

After spending an hour going through phone trees and email with the UCSF nurses, I finally just made copies of the copies so that I had something for my home file. Then my husband drove me to the nearest disability office. To our utter joy and amazement, there was no one else in that office, and someone took my paperwork and said that copies were just fine and everything was in order! I was told that I should be hearing back in a week or so!

Spirits lifted a bit, I did a little bit of homework at the end of the night.

Monday, December 6: intermittent stabby low uterine/bladder pain – late afternoon. I had consumed caffinated tea at lunch time.

Tuesday, December 7: sharp shooting uterine pain. I doubled over twice, took 600mg ibuprofen about 2:30pm. This was after having consumed caffinated tea less than an hour earlier.

Thursday, December 9: Visit to local family doctor to get peace of mind on the heart murmur that I was born with. I was told it’s barely detectable. I passed a cursory health check and she wrote me a note clearing me for surgery in case I needed the note.

Friday, December 10: Mercury went retrograde. UCSF anesthesiology failed to call me like they had planned, to go over surgery details.

Saturday, December 11: all-day teacher seminar. One of the instructors locked her keys in her car. I chose to call my auto insurance to get the keys out, since she said her husband always has handled the insurance stuff, hence she didn’t know it. The benefit to me waiting for a road service dude was that I didn’t have to sit in a room with 65 women and men wearing toxic scents. Well, for the first hour, anyway. Good thing I’d chosen my seat next to the door before everyone else had arrived.
Got home from the seminar, ate dinner, went to bed.

Sunday, December 12: Attended the (Charles) Dickens Christmas Fair with husband – met up with friends there. Pelvic pain and low back pain hit after walking around for 4 hours – I took 600mg Ibuprofen when I went to bed.

Monday, December 13: saw my shrink, discussed fears of surgery. She donated her old shower stool to me from when she’d had surgery (she has Crohn’s Disease). Husband got home from work that evening and informed me that there would be layoffs on Tuesday. He’s survived four or more rounds of layoffs over the last couple of years, but neither of us were optimistic about this one.

Today, Tuesday, December 14: Husband’s work laid him off. Spent much of the day crying. Had to come home from work at 2:30pm because I wasn’t coping. Husband arrived home shortly after me. I had shots of booze waiting for us. He drank two shots of fine whisky, I drank a shot of rum. We spent the afternoon talking about everything financial as related to the surgery. He’s got 4 months severance and health benefits, so he thinks we’ll be alright. He’s got money in checking and savings. I have nothing – I never have anything – I don’t make shit for pay. It all goes to two credit card bills, renter’s insurance, car insurance, earthquake insurance, special-needs groceries, and Internet access.

I spent this evening cleaning the bedroom, as I was scheduled to do before my surgery. We also went grocery shopping. My husband was invited to a friend’s house to drink – I was invited too, but declined because the nesting effect is so strong right now before surgery. And well, I’m not supposed to be drinking alcohol, especially so close to surgery, anyway.

Tomorrow is my last day at work for four to six weeks. I am taking the day before surgery off work as a mental health and preparedness day.

I don’t recall if I went into details before my last surgery – about the emotional aspect of having surgery. There’s a lot of normal irrational fear of dying, fear of something going wrong, fear of nothing being found. My added irrational stress is that we’ve just entered Mercury retrograde in Capricorn on a waxing Moon in Taurus. Also, with the surgery being a week before christmas, if anything goes wrong, my husband is left to mourn every christmas season.
Rationally, scheduling the surgery at this time works out best, because we both have the time off work (holiday shutdown), and because the deductible has already been met, so out-of-pocket cost is about $300 (and it doesn’t roll over to the next year). The surgery works best right now especially, since we don’t know what kind of insurance we’ll have after this. So the timing is shitty, but at the same time for the best.

I just wish I could stop getting myself worked up to near-panic mode.

I did wake up relatively pain-free, but not without having had a bit of a rough night.

I went to bed by 9pm because of the pain and immense fatigue. My husband came to bed sometime before midnight. I know because not long after, we were awakened by the phone ringing. It was my neighbor – her parrot had just died, and she was sobbing hysterically.

I got dressed and walked to the back of the house – she lives in the smallest unit in the converted Victorian. I spent the next hour with her – holding her, hugging her, talking with her, listening to her. I cried a lot, too. I have lost pets dear to me before, so I knew the pain. And I liked her parrot – he was quite a character. He was 20 years old. She said he hopped out of his cage and started making weird sounds, and flapped as he staggered across the room to be with his human. She put him up on her shoulder and I guess he tried to settle, and calmed for a moment, but got all twitchy again, then got weaker and weaker, and just fell into her hands and died.

Chili 1990 ~ 2010

My husband had to be up at 5am to drive an hour to the other work location for an early morning meeting, so I knew that me getting up at midnight and being gone for an hour like that was sure to disturb his sleep. It’s two hours earlier than he usually has to get up, so he was already not sleeping well to begin with. The fact that he had to get up an hour and a half before my alarm also meant that my disruption in sleep would greatly affect me.

When my alarm went off, I snoozed and snoozed til the last possible minute, but of course it’s fretful sleep when you hit snooze repeatedly. I was able to shower and get to work on time, though. I was thankful that the pain had passed.

However, by the time I got to work, I was already hypoglycemic and achey. The weird thing is that they did not expect me in today or tomorrow! It was written on the calendar and everything. The secretary was pretty confused, and said I’m always good about letting everyone know when I won’t be in, so how she wrote me off work like that was weird. I half jokingly told her not to worry, I might not last the day, anyway.

And so it was. The pain set in by about 10:45am, and the bleeding returned. It was all the stooping and bending, all the sitting down on the hard floor and getting back up again that did me in. But that’s what a preschool teacher does – a lot of moving around like that.

I was hoping that last night’s massive pain and bleeding had been “the last gasp” as my husband calls it, but I guess not. Although, the bleeding did not return with force today. It was just a bit of spotting. The pelvic pain was the thing that returned with force. I asked a fellow assistant teacher if I could do the snack cleanup duty instead of group time overview (because it meant more stooping and bending and getting up and down).

Even washing up some dishes and loading the dishwasher was too much for me. As I was drying the food containers a parent had brought, one of my head teachers approached me and told me it was the first day of her period, and her cramps were really bad, so she was going home. I wished her well and told her I hoped the pain would not be too bad for too long.

I returned to class and was on my way to get my water bottle when my other head teacher looked at me and said, “are you in pain?” I stopped and blinked. I thought I had masked it well enough today, cuz I was trying to stay up and about instead of giving in to the pain. I sighed and said I was just about to take some Advil, that the cramps had ramped up again.
The teacher told me she had worked with her friend’s sister in this school before, and one day she passed out from the pain. My eyes grew wide. I reassured her that I have never passed out from the pain, and that I would go home if the pain got too bad.

She replied, “You don’t look good. You should go home. We’ll be okay.”

So I took 600mg Advil and wrapped up the snack cleanup that hadn’t been fully finished because the newest assistant seemed a bit overwhelmed today. It’s okay – she’s doing an awesome job. Duties just sometimes get behind the pace of the schedule. We go with it and try to keep the flow. She provided overview with the children at group time to be there for another assistant teacher who was running the group, and I cleaned up and it worked out.
I made sure the afternoon supervisor would be okay without me, and then I saw the children out to the lunch tables at 11:30am with the rest of the lunch staff, and then I went home for the day.

The other weird thing that happened was when I phoned my husband to tell him I came home early. He asked, “Came home? From where?”

I blinked at the phone.

“Uh…from work. I had to work today. It’s Thursday.”

He replied that he didn’t know I was well enough to return to work at all, after having seen the condition I was in last night when he got home from work. I giggled – he’s right, how could he have known my plans if I’d not told him, “tomorrow I think I’ll be okay enough to return to work.”

So I told him how I had felt better and how after a few hours, the pain returned, like it does.

He told me to take it easy for the rest of the day. Sweet man.

I got home and ate my leftover Indian food (Saag Paneer and rice), and felt the crushing weight of fatigue upon me. But my mind would not let me sleep. I’m 15 days from surgery and all I can think about is getting things in order before the downtime.

It didn’t help that I got restless by being home all afternoon.

The carpets were filthy.

I vacuumed.

I COULDN’T HELP IT!

I wanted to clean out the fridge. I wanted to clean the bathroom walls. But I didn’t, because I knew it would make the pain so much worse. As it was, the vacuuming brought on a new round of cramps. I knew it would, and I did it anyway, because I was antsy and had cabin fever. The fact that it’s raining again doesn’t help the pelvic pain or my joint pain, either. Bleh. And I’ve been freezing all day. I had the furnace on and the space heater. Stupid hormonal whack. Stupid illness.

That’s how it goes.

I crawled into bed at 8pm, and texted my husband. He was exhausted from his long work day, and was now on his way to band practice.

Aww man! I forgot he had band practice tonight.

I’d been waiting for him to get home so he could declare how exhausted he was and just order us some food.

Poop.

So out of bed I got and made some gluten-free mac ‘n cheese with canned tuna.

It’s the same thing I made for lunch yesterday. Le sigh.

But I’m being responsible and eating what’s in the house, instead of ordering out like I did last night. And besides, the bills need to be paid up so that I don’t worry about ’em during recovery from my surgery. The more bills and such I cover right now, the easier the financial burden will be on my husband when he has to support me for a couple of months while I get back on my feet financially after having been off work for a month. I’ve been doubling up payments on one of my credit cards, too. Paying bills online today was one of the things I was able to check off my pre-surgery To Do list. The other thing I checked off the list was scheduling the ECG. I had no idea my family doctor could do that in office! Oh. Crap. Gotta make sure the insurance will cover it at that office, though.

Anyway, so here we are at 9:30pm. I’ve taken a total of 600mg Advil and 2 Tylenol 3 half pills today. And actually, I might take another half pill soon, because the low and mid back pain is increasing like it did last night before bed. :(
I need to get out of bed one last time to put away the uneaten portion of the mac ‘n cheese for tomorrow’s lunch.

Here I go.

I tried to go back to work on Thursday, September 16, but the Last Gasp happeed two hours into my workday and so I took a whole Tylenol 3 and came home. Thankfully, by Thursday night, that was the end of the major pain and bleeding.

I went to work on Friday and was able to complete a full day of work – the first all week. I never need this much time off this job for the pain, which tells me either the endo really is getting worse, or I’m becoming a wuss to the pain after enduring it for 25 years. I worked a total of 10 hours that week. Ugh.

Friday was not only my first day back to work, it was also my birthday. After work, my husband took me to a very nice sushi dinner, where I stuffed myself until it hurt, heh. I don’t think we went out that night – I was still too tired from just having spent a week bedridden. That’s how it goes.

Saturday, September 18, set the clock! Go out and have fun til the next endometriosis attack! We went to a nightclub down in Menlo Park to support the scene down there. I didn’t really have a good time, but we did get a nice picture taken of us:

On Sunday, we joined up with a fellow birthday girl for her annual Ice Cream Crawl, which took place in Oakland and in Berkeley. Around stop #6, I decided to eat sorbet instead of ice cream, which had given me a tummy ache, no matter how much lactaid I had ingested. The sorbet was raspberry chocolate flavour. To my dismay, it was full of raspberry seeds. I shared the sorbet with people in our group, and we all winced at how seedy the sorbet was.

Within twenty minutes, my throat began to get dry, then swell up.
Great.

So now I’m allergic to raspberry seeds? Wonderful. It’s in the same salicylate family with peach skins, grape skins, apple skins, apricots – all the stuff that also hates me either orally or intestinally.

I took a children’s benadryl but it did nothing, so I took a adult dose of benadryl on top of it – 36mg total. This of course made me a zombie, and so my husband ended our Ice Cream Crawl and took us home for the day. The swelling did not abate all day and all night, but I refused to go to E.R., because the last time I did, they told me they could not visualise the swelling, so it must just be me having a panic attack. To which I’d replied, “I know what a fucking panic attack feels like, and this is not it.”

I get the same throat swelling when I eat eel. Actually it’s the uvula that swells up. Same thing happened with the raspberry seeds, only not as horrible as it does with eel, thank [insert deity here].

I refused to go to E.R. because I cannot afford further debt with them – still haven’t paid off the June debt I incurred with another oral allergy attack. And I refused to use my epi-pen because you HAVE to go to E.R. if you use it. So I was kinda stuck. I knew I wasn’t gonna die, or at least I hoped I wouldn’t die choking on my tongue.

I made it through the night and the swelling went down by morning.

What a sucky end to my birthday weekend, though.

All through this whole time, I was still dealing with having to be on muscle relaxers for the trapped nerve in my shoulder. So I was quite the grump.

Monday, September 20, while bicycling to my psychology appointment after work, I experienced pulling, stabbing pain in my right ovary. This is not a good thing to be going through while pedaling. The pain lasted for several minutes after I climbed the two flights of stairs to my shrink’s office. Ugh.
The pain went away, though. Thankfully. But I was not even a full three days into my new cycle when that pain hit. The endometrioma is doing bad things to me. :(

I was able to bicycle to work for most of last week. I even made it to the gym on Thursday, September 23, for the first time in 146 days. I did the 2lb hand weight workout exercises as prescribed by my trainer, and then I did 14 minutes on the elliptical machine.

The pain from the workout did not hit until Saturday, just in time to help my friends move in 85°F heat. I designated myself cleaning lady that day, because on top of the workout pain, I slept wrong again and the trapped nerve issue in the neck/shoulder flared up real bad again.

On top of all of this, I’ve been bruising the hell out of my legs by running into the coffee table repeatedly, as well as the child-sized furniture at work. I have bumps and bruises and scrapes. I think the clumsiness is due to the muscle relaxers.

Because I’ve not really enjoyed a pain-free or sick-free or allergy-reaction-free day in about seven weeks, I have hit my breaking point emotionally.

It’s not fair that I can’t enjoy my 11 – 20 days between endometriosis pain cycles being totally free of any other sickness or pain.

It’s always something. :(