I Will Not Suffer In Silence

On Monday September 28, I woke with very very slight spotting, but feeling like a mack truck had run over me. I attempted to call in sick an hour before the start of my shift, but couldn’t reach anyone. After talking with the director, I agreed to come in for a half day, which for me is 3 hours.
I got to work and immediately popped 400mg of Advil liqui-gels. The low back pain and occasional stabbing uterine pain had me walking like a little old lady all morning. As I was cleaning up my classroom at 11am, I slowly picked up a full bucket of water and cried out in pain from the stress it put on my pelvic muscles. My eyes welled with tears and I set the bucket down, whimpering.
I let the bucket sit and told my co-teacher I could not lift it. I went about closing up other parts of the classroom, which entails putting plastic sheeting over the shelves to keep dust and dirt off of the classroom materials, since we’re an outdoor classroom. As I neared one of the shelves with a plastic sheet, I tripped over it. The act of me trying to catch myself mid-stumble set off my pelvic pain anew. I about started crying, and declared out loud that I was definitely done for the day, and that my previous guilt and doubts could now shut the hell up.
I went home and spent the rest of the day on the couch medicated on Tylenol 3 and Ibuprofen. I went to bed that night freezing cold, so I put the heating pad on and rotated it from my feet to my thighs to my pelvis and back to feet again until I warmed up. I think the house was 68°F to 70°F but of course my hormones thwack my core temp regulation.

On Tuesday, September 29, I woke feeling fine. I got ready for work, ate my breakfast, and marveled that I was not in pain, though I was still spotting. I was pleased that I didn’t have to call in sick.
However, just as I was about to go out the door, I was seized with full body hot flash, hypoglycemic attack, and nausea. The spotting increased and was dark brown in colour, whereas on Monday it had been brownish/pink.

I tried to call substitute teachers to fill in for me but since it was half an hour before the start of my shift, I could not reach anyone in that short of time. I left messages and went to work, anyway, taking a wait-and-see attitude, thinking maybe the pain would not get too bad. I popped 400mg of Advil liqui-gels as soon as I got to work. The director was shocked to see me after I’d gone home in such pain the day before. She talked to me about her daughter, who also suffers from bad menstrual cramps. She told me how her daughter says she gets a numb like feeling in her upper thighs/tops of legs, and that’s how she knows the pain will be bad. I explained to my director that there’s a whole mess of nerves in the pelvic region, and that when pain flares up, these nerves become irritated – these are the same nerves that also travel down the legs, and so the pain travels, too:

She said her daughter often vomits from the pain, and that it lasts only the first day of her cycle, and then she’s alright. My director further added that she too used to vomit from the pain and only had it really bad on the first day.

The pain for me abated, and I was able to get through an entire morning just fine! However, when the last students left my room at 11am, I realised I was very hungry. I began snacking before the lunch rush – three classes of children come outside to have lunch around 11:30am, and I turn into part of the lunch crew. So I snacked a bit and then the nausea started. Oh no, I thought, the pain can’t be far behind. A hot flash followed the nausea, and the spotting increased with some pain, but I stuck it out, and the pain again subsided. I made it through an entire day of work. I came home and still had good energy, which lasted into the evening. I picked my husband up from the BART station and we went to dinner, even. I felt energetic and cheerful and enjoyed every minute. The pain didn’t return again until around 9:30pm, at which point I put myself to bed.

I got up this morning and wanted to cry. The pelvic pain has so far been dull, achey and minimal, but my emotions are seriously fubar, so if anything, today was needed off work as a mental health day, anyway.

For the past several days, I’ve been doing the large hip circles I mentioned last month, because it helps me stave off the pain.

I got back in touch with my Qigong practitioner to see if she’s teaching Qigong class again – she’s not. Says no one is showing enough interest to justify it. But what about one-on-one sessions? Meh.
She wants to perform Chi Nei Tsang on me again, though. I will do that and another Liver/Gallbladder cleanse, which is a dietary program which lasts for a month.

I’ve also gotten back in touch with my masseuse, and requested regular sessions with her, citing that the muscle memory in regards to the chronic pain is getting beyond my control to manage, and I need her help. She’s more than happy to see me. She wrestled with endo for years before finally giving in and getting a hysterectomy. She found that the pain didn’t stop, and realised her muscles still held the memory of the pain. She had to train her muscles to let go of that. It took years, but she succeeded.

So that’s where it’s at.

Back on September 16th, a day before my birthday, I wrote a wishful thinking post. I had resolved “to live the next 11 days as well as I can, and enjoy life the best that I can, until the darkness falls once more”.

The very next day, on my birthday, while at work, I was suddenly seized with severe bladder pain, which lasted a few minutes. This happened around 11:45am, during the lunch rush, where I’m supposed to be monitoring children aged 3-5 eating their lunches, keeping them in their seats, resolving fights, reminding them to wipe the table and sweep up after themselves, and help them open up their food packs. During the lunch rush is when I am needed by no less than three children at a time, for over an hour, for one thing or another. All told there are around 50 children at lunchtime, and there’s about five or six adults. It’s about 1 adult per 8-10 kids. For some reason, once you mix the age groups, the 1:4 or 1:6 ratio for the 3-year-olds no longer applies. So it’s constantly overwhelming at lunctime, and here I was getting unexplained knifing pain in my bladder. It wasn’t uterine. It wasn’t ovarian. It wasn’t cervical. I don’t normally get bladder pain.

Now, about a week prior, I’d had a yeast infection, which I promptly took care of with Diflucan. I got it because I didn’t shower before intercourse. Women with endometriosis are prone to yeast infections at the drop of a pin, and you and your partner both need to be clean before intercourse to spare you the chance of infection. I lagged in my duties.
Anyway, I wondered if Diflucan can cause a bladder infection, but in checking the side effects lists, I don’t see evidence of that. Perhaps the yeast infection had turned into a bladder infection? I’m still wondering about that.

So the bladder pain I had on September 16 only lasted a few minutes, then was gone. A few minutes of course feels like an eternity while it’s happening, but it did pass.

I did pretty good for the next two days – Friday and Saturday – though I did have some pelvic pain twinges on Saturday September 19. So perhaps I was good for only ONE day if you wanna get technical.

On Sunday, September 20, I woke with severe low back and pelvic pain.

As I was getting dressed, my back went out – my upper left scapula was pinched the most, and it was hard to breathe. I could feel the pain under the back of my ribs. I had no range of motion. I spent most of that day with intermittent back, pelvic and shoulder pain. I took half pills of Tylenol 3 and whole pills of Ibuprofen all day long. The pain would seriously disappear for minutes or an hour and then return again. It was crazy.

On Monday I had continued flank pain, and a cankre sore popped out around 11:30am. I went to the doctor right after work and was told I had swollen lymph nodes, that I was fighting something, but that I wasn’t contagious. The low back pain continued through the evening, and I went to bed with a heating pad that night.

Tuesday was more of the dame – low back pain, but get this – I awoke with shin splints. WTF!!!
I also had developed a sore throat, sores forming under the back of my tongue, moderate fatigue, and sore shoulders again. That day I also had some pelvic pain, and my left thumb broke open again. I had a nagging headache by 8pm that night. I napped when I got home, and my body temp dropped during the nap – I got goosebumps, I was so cold, and the house was 73°F.

I seriously started feeling like I was going crazy. But now, after reading the side effects for Diflucan, it all makes sense. I just wish I’d been more intuitive the last times I’d taken Diflucan, to establish whether this is always true – whether I always have these side effects – or if it’s something new because my body continues to grow weaker because of this stupid immune system disease called endometriosis.

Wednesday – sigh a breath of relief – I felt better.

But we’re not done, yet!

On Thursday, September 24th, I felt quick knifing very low uterine/bladder pain 2-3 hours after consuming 1.5 cups of Sierra Mist pop, which I was craving. I never crave pop anymore, so this must be a serious bout of PMS coming on. Of course, pop contains corn syrup, which ALWAYS causes pelvic pain whenever I consume it.

I didn’t bike to work at all that entire week.

On Friday, September 25th, I experienced intermittent dull uterine pain all day. However, after work, I decided to bike to my therapy appointment and from there bike over to the company BBQ. I was tired but I did it, in a show of stubbornness.

That night, around 10 or 11pm, I became very dizzy as I was leaving my friend’s house. The pelvic pain had ramped up while I was hanging out with my friends, and so I’d taken 600mg Ibuprofen. I don’t think the dizziness was from that, since I take Ibuprofen so frequently.

On Saturday – yesterday – our town was experiencing another heat wave. Despite being 87°F outside, my husband and I shopped at some local Halloween stores. Yesterday I consumed a white chocolate raspberry blended mocha (with cow’s milk) because I was really fatigued and craving the caffeine (HELLO PMS!).
Last night my husband and I were intimate and right afterwards, I felt nauseated, and then the cramps started. I checked myself and there was brown blood. I thought for sure I’d started my period. I went to bed wearing a pad but the bleeding stopped, never touching the pad.

Today I’ve been seriously tired. I slept for about 10 hours and haven’t wanted to get up all day. The low level nausea has been with me all day. I’ve had the feeling that my period is starting but every time I check, it’s not there. I’ve had annoying low back and pelvic pain all day.

It’s nearing 5pm and I’ve been on the couch the entire day. I had planned to attend a birthday party for a friend, a parking lot sale, and then see another friend play with his band tonight.

I’ve missed everything so far but the band, and I’m not sure I’m up for that, either.

So let’s recap – where did those 11 days go that I was so excited to live for?

Of those 11 days, I got to enjoy 2 days pain-free.

2 days.

Out of the past 27 days, I have enjoyed roughly 8 days pain-free.

I have not gone back to yoga class, and I’ve been in too much pain to do the yoga video that I own.

I have continually doing slow stretches and fighting through the pain. I often do the wide hip circles when not out in public (cuz doing those makes one look like a pole dancer, heh) in an attempt to ease the low back and pelvic pain.

To anyone who doesn’t suffer from chronic pain, I hope this gives you an educated visual, and I hope you understand it a bit better when I tell you just how tired and depressed I am.
Just because I have high hopes, doesn’t mean my body wishes to cooperate.

Oh and to those of you who still think wishful thinking and being positive will end my pain, you can go to hell.

I was at work on my birthday (Thursday, September 17) monitoring the children at lunchtime, when suddenly I was doubled over in sharp shooting pains in my bladder region.

The pains continued intermittently for several minutes, and then disappeared for the rest of the work day.

Three days earlier, I’d had some bladder pain, too. The pain was about six days following the end of my last period, and I had said it was either due to trying to do yoga first thing in the morning, or perhaps it was mid-cycle pain already.

After the severe pain had passed on September 17, I went to the bathroom to check on myself and found lots of milky-coloured, sticky discharge. My first thought was that the cervicitis was back. But the pain felt lower and definitely more frontal – in the bladder.

It is possible with how hot it’s been outside, and all the running around I do when working with children, that I’ve given myself a bladder infection because I let myself go for too long before rehydrating, before using the bathroom, and well on top of it all, I’ve been sweating through my cotton underwear and forgetting to bring an extra clean, dry pair to work with me.

On Friday, I brought extra undies and changed into them by lunchtime, but still, the damage is done and I’m not sure yet if I caused whatever infection is happening, or if it’s just manifested on its own.

Then, this morning I woke up feeling like a mack truck ran over me. I had low back pain so severe that I wanted to cry. I got out of bed and sat on the couch with a pillow behind my back. The pain dissipated between that and then taking a nice, hot shower.
However, as I was putting my clothes on, I experienced pain in my left scapula, which radiated to under the back of my ribs. It was hard to breathe. At one point I sneezed and thought I would cry. The pain lasted for the better part of the day, with the severe low back pain returning on top of the shoulder/rib pain. Around 4:30pm, the shoulder/rib pain was gone again and it was mostly low back pain. By the time I got home from a birthday outing for a friend – around 6pm – it was back to shoulder pain AND low back pain again, and that’s where it’s been ever since.

I’m mad because as of September 16, I thought I had around 11 good days left before bedridden time again. And then the next day, POW, pain that made me double over. Three days later – today – POW, alternating pain from low back to upper left shoulder to low back to pelvis… lather, rinse, repeat.

I would say welcome to Living With Endometriosis – women are more prone to bladder infections and a condition known as Interstitial cystitis (IC). But the thing is, I’m NOT having the main problem associated with bladder infections or IC – painful urination.

I looked up Urinary Tract Infection, Candidiasis, Cervicitis and Interstitial Cystitis – what I’m experiencing doesn’t fit any of those conditions.
I even looked up kidney infection – nope, not what I’m going through aside from the flank pain.

The only thing left which has more than one symptoms similarity for me would be Mittelschmerz – which I first proposed back on September 14.

Other than that…if the pain persists, the next ‘only other’ could be ovarian cancer. Whatever. I already have a prescription to go get a CA 125 test and I’m prepared emotionally WHEN it comes back as elevated level.

I normally type in this blog when I’m bedridden from the endometriosis, when I’m reporting about a doctor, or when I’m chronicling my body’s reaction to foods and/or meds.

However, this evening I would like to talk about what my life is like when I’m not in debilitating pain!

A week ago last Wednesday was the last of the endometriosis pain for a few weeks. Since that time, I’ve been bicycling to work, which is a two-mile round trip. I pedaled on Friday, September 11, Tuesday, September 15, and today.

Several years ago, I used to bicycle 17-35 miles all in one go, once a week. I stopped doing that after I had laparoscopic surgery to diagnose me with endometriosis in 2007. That same year, I lost my bicycling buddy (she got married and moved away). Since that time, I’ve not had the motivation to continue biking, and I feel bad about that. It did take a few months after surgery before I even began to feel healthy again, but still. I should have gotten right back on the bike.

Anyway, I biked to work on the 11th despite heavy fatigue from the last of my painful cycle. On the 14th I did not bike to work, because I had a dermatology appointment to drive to immediately after work. I would have pedaled were it not for that appointment. That afternoon however I did have some pelvic pain, so that would have sucked while biking anyway.

Now that I work very close to where I live, I can bike to work. So when my body allows it, I pedal two miles a day round trip, and it’s hard work until I build up all my muscle and stamina again. There aren’t even any hills right where I live – it’s flat! Alas, it takes time to build myself back up. Which brings me to the next statement –

Today I bicycled FOUR miles!

I forgot a portion of my lunch at home today, so on lunch break I pedaled back home to get the rest of my lunch, then pedaled back to work. It took 20 minutes to go 2 miles with a quick pit stop.
Now get this – back when I was an avid cyclist, I could go 7 miles in 20 minutes, INCLUDING hills.

This of course is a personal challenge – to get back to where I used to be as a cyclist.

Next week is already going to be one week pre-menstrual again. I’m not looking forward to it. So far this month, I will have about 10-13 days all told of feeling healthy and vibrant before the symptoms return and I get all worn down, heavy fatigue, PMS, cramping and then the bedridden again. I’ve already used up two of those 13 days. I sigh heavily but then resolve to live the next 11 days as well as I can, and enjoy life the best that I can, until the darkness falls once more.

People who don’t have chronic issues can’t understand the darkness – the severe depression that comes with not being able to leave the house for two or more days at a time. This statement does not apply to just chronic PAIN, but to all types of chronic illness. If you have a chronic issue that prevents you from living your life for two or more days each month, you know you are a soldier and that I march right along with you.

Live when you can, and breathe patience when you cannot, but don’t ever give up.

Towards 3pm today I had some twinges of pain which felt like it was in both sides of my pelvic bones – what is that called, the ilium? The two bones that protrude in the front pelvic region. Anyway…

When I was on my way home from an appointment around 4:30pm, the pain got worse. It felt like I felt pain in the bones themselves, which sent stabs of pain intermittently to my uterus and bladder, and then down my legs. The pain in the legs feels like muscle and bone pain. The pain radiates to my knees and sometimes as far as the tops of my feet. The pain is still happening right now as I type. It gets worse at times, then tapers, then returns.

Today is somewhere between Day 6 and Day 8 of the new cycle, and every menstrual month around Day 8 of the new cycle, I get pelvic pain. Usually it’s unmistakable ovarian pain, with severe pinching on one side, but sometimes both sides (ovulation).

The pain today is unusual. On the pain scale, I’d rate the pain between 2 and 4.

I’m wondering if the pain is not due to ovulation, perhaps it’s due to me trying to do yoga first thing this morning. When I woke up, I went straight to the living room and laid down on my back with my knees up. I tried to relax into the floor but it was very difficult because my body always tries to curl up on itself even when I sleep. So I laid on the yoga mat for several minutes, trying to get my back to loosen. It refused and began to hurt, so I slowly sat up. I sat with my legs out in front of me, trying to sit straight up. Again, a major fight. I slowly got up and stood with arms outstretched and just held that stance. My entire back started hating me at that point. It’s like nothing I did helped – only made the discomfort worse.

I’m off to take some Ibuprofen, and to figure out if any stretching would be beneficial tonight before bed. Wish I had a hot tub.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Endometriosis
2. I was diagnosed with it in the year: 2007
3. But I had symptoms since: 1985
4. The biggest adjustment I’ve had to make is: is in figuring out my critical window of health each month and learning to use that time to get as much done as possible before the next Downtime comes.
5. Most people assume: I have no idea what they assume.
6. The hardest part about mornings are: trying to stretch my body back into proper posture, because my body always tries to fold in on itself to protect the painful pelvic region. I walk like a little old lady for the first several minutes each morning.
7. My favorite medical TV show is: (i don’t watch teevee)
8. A gadget I couldn’t live without is: a phone
9. The hardest part about nights are: trying to stretch my body back into proper posture, because my body always tries to fold in on itself to protect the painful pelvic region. I don’t like going to bed still in pain, and have to stretch out over the side of the bed, or do some yoga before bed.
10. Each day I take 3 – 8pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: have tried Qigong, Chi Nei Tsang, Yoga, Acupuncture, Acupressure, Chinese herbs, Massage, Chiropractic, Homeopathy, Meditation.
12. If I had to choose between an invisible illness or visible I would choose: visible, because most people don’t have empathy built in unless they see the illness. ‘Seeing is believing’. If you saw me in a wheelchair, you wouldn’t say, “oh everyone has pain, I have pain, you’ll be fine.” And if you would still say that, well you suck. :p
13. Regarding working and career: I was fired from a job for missing 1-3 days each month due to endometriosis. I have since that time had to argue my right to work with three other employers, and I always live with the apprehension that one day I’ll be fired again, and have to go through legal proceedings once again.
14. People would be surprised to know: that I have at times lost the will to live because of this illness.
15. The hardest thing to accept about my new reality has been: guilt management. I did not ask for this disease – I was born with it. The fact that I must miss work because of the pain is NOT MY FAULT, and I have a RIGHT to be accommodated. The fact that I still have pain despite surgery, trying numerous pain meds, trying hormones and alternative therapies is NOT MY FAULT, and I have a RIGHT to be believed. But still, the guilt haunts me. The fact that people don’t believe my pain hurts me emotionally. The hardest thing to accept is that I do NOT have to have such guilt.
16. Something I never thought I could do with my illness that I did was: train for and bicycle 66 miles for the Cinderella Ride. :)
17. The commercials about my illness: …are there commercials about endometriosis? If so, they’re probably pharmaceutical companies trying to trick women into taking hormones to ‘treat’ or ‘cure’ endo – THEY LIE.
18. Something I really miss doing since I was diagnosed is: eating anything I want. Research has proven that eating red meat and ham makes endo worse, as does spicy food, citrus, caffeine, tomatoes and alcohol.
19. It was really hard to have to give up: drinking pop and eating sweets, because I discovered on my own that High Fructose Corn Syrup brings on severe pelvic pain, as well as joint pain immediately, and the pain lasts for days.
20. A new hobby I have taken up since my diagnosis is: blogging for endometriosis awareness. :)
21. If I could have one day of feeling normal again I would: (n/a – I DO always have a few days a month where I do feel normal, and I use those days to get as much done around the house as possible).
22. My illness has taught me: to continually test my threshold of pain, patience, willpower, stamina and compassion.
23. Want to know a secret? One thing people say that gets under my skin is: “compared to what you go through, my pain is not so bad”. EVERYONE’S pain is REAL and VALID and must be accepted at face value as hardship for the person suffering. To demean your own pain like that instigates some sort of one-up contest, which I will not be a part of. It only insults me.
24. But I love it when people: say things like, “may today be pain-free” and “here’s hoping today brings less pain.”
25. My favorite motto, scripture, quote that gets me through tough times is: Don’t ever give up.
26. When someone is diagnosed I’d like to tell them: that Danazol, Lupron, all GnRH hormones as well as birth control pills are NOT the treatment answer, no matter WHAT their doctors tell them. Sadly though, women usually have to find this sad truth out for themselves.
27. Something that has surprised me about living with an illness is: the amount of dread and guilt I harbour, which as a result, affects all aspects of my life.
28. The nicest thing someone did for me when I wasn’t feeling well was: come over and keep me company so that I would not be alone and afraid.
29. I’m involved with Invisible Illness Week because: the more our voices are read and heard, the closer we get to eventual validity and recognition for what we go through.
30. The fact that you read this list makes me feel: validated.

Thanks to Susie Collins over at The Canary Report, I found the Invisible Illness Week website, which has the meme posted above. Apologies to my fellow endo bloggers if you’d already posted about the Invisible Illness website – I just didn’t see it til now.

Wednesday night after writing my last journal entry, I was besieged with sudden sharp cramps. To my dismay, this produced a little blood. I thought everything was done and over for the next 25 or so days, but I had one last gasp as my husband calls it.

The pain was centered in a different place than it normally is – it was cervical/vaginal, radiating all the way out. I think the last time I had pain like this was when I was a child – I was around age 9 or 10 and had severe cervical/vaginal pain that left me screaming and crying. This was about five years before I’d even begin menses. My ma had no idea what to do – she gave me a pad with yoghurt to wear overnight, and my memory is that the pain dissipated. The yoghurt of course was because she probably thought I had a prepubescent yeast infection.

Anyway, the pain on Wednesday night was continuous for about 10 minutes, and then intermittent for the rest of the night.

Yesterday and today I was still feeling worn out, easily fatigued, with debilitating low back pain, but I’m getting better at working out the pain as soon as it hits – it’s always a matter of correcting my posture and doing a slow yoga type stretch. My shoulders hunch and my pelvis tilts forward, like most of the women in my family on my mom’s side. The lot of us have endometriosis and scoliosis. I have a tipped uterus, which probably also accounts for the pelvis tilting forward, because the uterus is tipped back.

My energy returned on Wednesday, and for the last two nights I’ve had a lot of trouble getting to sleep. My mind has the post-bedridden manic energy and wants to get things done, while my body is still saying, “Whoa, heyyyy, hang on there, I’ll be right there…”

This morning however I decided I’d ride my bike to work again. I’ve not ridden my bike because of chronic pain since August 31 or September 1, and I only have a one-mile commute to work. Just one mile each way! But it’s too much to ask of my body when the downtime comes for me. So I was very pleased to be able to hop on the bike again today. :)

I made it to work yesterday and today and suffered minor cramping on and off all day both yesterday and today. I had excruciating low and mid back pain as well.

Last night my energy was up after I got home, and I was feeling much better.

This morning however my energy was low; so low in fact that I thought I might have to leave work or else fall over and nap where I fell. I was severely fatigued and my eyes hurt from how tired I was. I didn’t go to bed last night much later than I normally do.

I got home from work today and took a nap for an hour. I woke up two minutes before President Obama was to give his speech on health care reform. So glad I woke in time to watch it online!

I’m still very tired as I sit here typing. It’ll be an early night for me. Hopefully the energy will return tomorrow and I can enjoy the next 25 or so days before the downtime again.

The low back pain was so intense that I rolled out of bed around 8:30am this morning and hobbled like a little old lady to the microwave so I could heat up my corn heating pad.
Today again I have been refusing medication. I’m continually testing how much pain I can withstand before taking meds. This is much easier to do when I’m not moving around doing housework or chasing after young children at work.

Around 11:30am, I got tired of being couch-ridden, so I got up and carefully loaded up a basket of laundry. I placed the basket onto a luggage dolly and took the laundry out to the back of the house to the little shared laundry room. By the time I got back inside the house, the bleeding and cramping had returned. That’s all it takes to set off the pain.

Still stubborn, I set my meds out but did not take them. Instead, I set about cleaning under the kitchen sink, which was still a mess after the last ant invasion. I removed all the items under the sink, sponge-cleaned it, carefully applied a new layer of AntEater along the back wall, and replaced and organised the items.

Next, I took care of the food recyclables in the fridge and took inventory of what grocery shopping needs to be done tonight or tomorrow, and then I had a light lunch.

It is now 1:30pm and I am finally crying ‘uncle’. I will take the ibuprofen and Tylenol 3. But this makes me mad, because now I’ll be a useless zombie for hours. My husband will be home from a gaming convention in the next hour, and I wanted to go to Daiso. Perhaps we’ll go anyway, even with me as a zombie.

All day I have tried to stretch out my back to no avail. It’s so locked up and painful. I cry out in pain to just arch my back a teeny bit. My body wants to completely fold in on itself like a rollie-polie.

One thing I forgot to mention was that on Friday, Doctor Bernard-Pearl, the gynecologist who referred me to the oncologist, called me back about my cervix question. She told me that I do have an ectropion cervix, but it’s not something to be worried about. She said she sees this all the time in women, and told me that basically my cervix looks like a 16-year-old’s cervix to her, where ectropion is quite common in teens. She said it is in no way tied to the cervicitis issue, and to not be worried.
Then we discussed my visit to her referral. I told her how arrogant the surgeon was, and that she wanted me under the knife ASAP, to remove the uterus, the ovaries and the cervix as the only ‘cure’ for endometriosis and my pelvic pain in general.

Well wouldn’t you know, Dr. Bernard-Pearl was shocked! She was disappointed! She told me she would never have referred me to this surgeon if all that would be offered was total hysterectomy. She told me she does NOT think hysterectomy is the answer for me. She told me that the gynecological oncologist she referred me to is one of the best excision surgeons around, and that’s why she sent me to see that surgeon – for excision – not hysterectomy.
She then asked me if that surgeon had any other alternatives to offer me, such as medicinal treatment. I told her no, the surgeon outright refused and referred me to yet another doctor – Pollycove – who might treat medicinally.
My gynecologist huffed, and said she herself could just keep treating medicinally at this point. She apologised to me and expressed again her disappointment, saying that this gynecological oncologist is one of the best surgeons in the region, along with Dr. Nezhat.

I fell silent at that point. My own gyn likes and respects Dr. Nezhat?!?

I drew a breath, then told her not to refer me to Nezhat next, cuz I refuse to see him – he has too many lawsuits and has a shady past and I won’t have any of it. I asked if she knew Dr. Cook. She said no. I asked her if she knew Dr. Redwine. She said no. I sighed. I told her I’d seek out Dr. Redwine myself, then, since of the two, he’s more well known and openly respected on the endometriosis forums.

So that’s that. I will continue medicating and trying yoga and Qigong and other stuff to manage the pain, and save up money and vacation time to go to Portland to see Dr. Redwine.

As I mentioned in my last entry, George arrived on Friday, September 4th. Because I am stubborn, I did in fact go to work that day. I composed myself, hastily threw together some lunch and snacks, took 600mg Ibuprofen and off I went. I got through most of the day, uncertain at times if I would make it through the next 15 minutes. But I held on. I only ever got to about a 6.5 on the pain scale…until the lunch rush.

At lunch time we have between 50 and 60 children under the age of six eating and then playing on the playground. There’s a lot of stooping, bending, sitting down and getting up, sweeping up after, wiping of tables, and even running across the playground if there’s an accident or a fight. The pain of course ramped up to a 7.5 during this time. But I still hung in there, because I didn’t want the children to not have enough teachers present. I didn’t want to create a situation where the school was not within its legal student/teacher ratio obligation. Though I had been in contact with upper management since arriving to work that morning, as expected no help arrived – no substitute to fill in for me. So I just hung in there, and told the director I’d be leaving after lunch duty.

By the time all three classrooms had gone in for naptime and a few of us teachers were cleaning up, I was ready to cry. I was more emotional than painful actually, but either way it signaled for me that my threshold had been reached. With every sweep of the broom, I wanted to cry. You know, you use pelvic muscles just to sweep with a broom. You don’t realise this because normally it’s such a non-issue. But when your entire pelvic region is on fire, you feel everything – every step when walking, every breath, every muscle when reaching for something, and every sweep of that broom.
I finished up, told my cleanup co-workers, the afternoon supervisor, and the teachers for the three classrooms I work with that I would not be available for the outdoor classroom or end of day daycare (we call it extended care).
I came home just over two hours before the end of my shift, but instead of feeling guilty or failed, I was proud to have made it through most of the day.

When I got home, I took Tylenol 3 and unfortunately got into a fight with my husband. His dad is on dialysis and his dad’s wife keeps running away because she can’t handle having to take care of someone. She takes frequent vacations and notifies us at the last minute to look in after dad, like he’s some kind of friggin’ cat. It’s pathetic. My husband was really mad at her latest vacay announcement and said it totally interrupted his plans to be at a gaming convention this weekend. So the fight we had was me reminding him that at the heart of all his hatred for this woman, and his rebellion towards her – behind all that IS HIS DAD, who needs some fecking assistance. I just got tired of biting my lip on this and went splodey at my husband over it.
I spent the rest of Friday afternoon napping and sitting around in a pissy mood, although I did apologise to my husband for losing my temper, and we did talk things out. I continued stretching and doing slow wide hip circles whenever I could. I think I went to bed before 9pm Friday night.

On Saturday, I put on my stubborn pants again so to speak, cuz I got up at 6am and was out the door by 7:15am to go to class. It was my first day of class for the school I work at, to get me certified in the subjects I am supposed to be teaching. It’s a long story… I used to be a head teacher many years ago, and I just came back to the field of teaching in 2008, and the school that hired me this year wants me to be a co-teacher so they’ve told me to take a class and so I am. Until I complete the course, I only get assistant teacher status and pay. Upon completion, hopefully I’ll get a raise and updated status. I hope I don’t have to wait until I’ve completed the entire program. We’ll see…
The class I’ve signed on for meets every other Saturday from now til Halloween. It’s college-level immersion, so there’s going to be tons of homework.
I was in class from 8am to 4:30pm on Saturday. The pain level got to be a 7 at times, and I shifted uneasily in my chair. By 2pm I was done, but stuck it out. As everyone was helping to clean up at the end of the day, someone accidentally knocked over one of the shelves in the classroom, shattering several bowls and artifacts. The loud crash startled me of course, and kicked up the adrenalin, which in turn set off a new round of cramps so intense that I thought I would burst into tears and puke at the same time. I was really rattled and emotional by this point. I helped for a few minutes to pick up pieces of broken porcelain, then fled the room and waited for us to be officially dismissed after the mess was cleaned up.

When I got home, my husband wanted to go out to eat. We decided on a local taqueria, but for some reason it was closed. As we walked a block back to our car, the pain ramped up again. I made it through dinner at another Mexican restaurant, but was quite uncomfortable.
We stopped home for a minute, I took more ibuprofen, and then we went to Target. It was Saturday night and I didn’t want to stay home, but I was incapable of being at a party or a nightclub. We went to Target to see if any of the Halloween merch was out, yet. Halloween is our favourite holiday – our house looks like Halloween year ’round.
I lucked out at Target, finding spooky PJs and socks and shirts, but my husband was disappointed – nothing in the men’s section for him at all. We were there for about half an hour when suddenly I felt the need to just lay down. I seriously felt like my body had become leaden. Every step had me out of breath. My eyes began to droop. I had to call my husband to tell him where I was in the store so he could come find me and take me home. My speech slurred, and I wasn’t even on Tylenol 3. I slowly put all my merchandise back on the shelves and we left the store. I nodded off in the car on the way home.

The last few miles of the drive home became excruciating when a new round of pain set in. When we got home, I took Tylenol 3 and just went to bed.

That brings us up to date – I woke up this morning and decided to rebel against taking my meds. This happens nearly every month – I get so fed up with being zombified on pain meds that I refuse them.
I got through most of the day today just taking it easy, doing slow stretches, sitting on the pot, and laying down. But the pain finally got the better of me around 8pm, and I took a Tylenol 3. The pain ramped up faster than I could handle, however, so I popped another half Tylenol 3, and now I’m seriously stoned. I was pain-free thanks to the meds and my new heating pad, but after an hour the pain is seeping through again, so it’s time to lay down.

Tomorrow is Labor Day. I have the day off work and another day to recover from george. I hope tomorrow is the last of that bastard for another 26 days.