I Will Not Suffer In Silence

I had a moment of panic in the bathroom today at work, when I discovered I’d started bleeding heavier than yesterday.

My period was supposed to be done last Sunday, but I started spotting bright red again yesterday.

Today, the blood was dark brown with debris – the so-called ‘coffee ground’ blood. At this point, I finally acknowledged consciously that something is wrong. I suspected once again that I’m dealing with an ovarian cyst. This is something that, in the past few months, I’ve given brief attention to, but pushed it out of my head. Today, I was forced to acknowledge it as fact.

So I looked back in time and realised that this endometrioma or cyst has been in the works for the past six months – since probably November, 2013.

Nov. 4, 2013: 5 waves of intense pain – 7 on the pain scale. Nausea with evening pain flare. Took half a vicoprofen.

Dec. 1, 2013: Nausea, extreme fatigue, shakey legs. Mild to moderate pain. Dark brown flow, turning to red.

Dec. 29, 2013: Bedridden. Puked from pain. 8.5 on pain scale.

Jan. 21, 2014: Moderate uterine and ovarian pain.

Jan. 22, 2014: Moderate bleeding and cramps. Severely fatigued all day, w/ fatigue lasting through Jan. 24.

Feb. 16, 2014: Debilitating pain. Did not note whether mostly ovarian or low back. Bedridden for part of the day on the 17th.

On May 2, 2014 the pain ebbed and flowed. I felt better after work, but then on the way home from hanging with friends, I was crying from the pain, which was mostly on the left side, radiating down my left leg.

May 3: intermittent moderate pain, especially in the lower back.

May 4: Low back pain mainly, but also stabbing on both the left and right side ovaries. The bleeding was subsiding, so I thought I was done with my cycle. That night, the pain cranked up to a 7.5 on the pain scale, and I laid on the floor on my back, crying, while my S.O. looked on helplessly.

May 5: pain and bleeding subsiding.

May 6: my entire back was locking up at the end of the work day. Then shooting pains down side of left leg, then right leg, then pelvic. I started bleeding bright red again.

May 7: ‘coffee ground’ discharge – a mixture of new and old blood, so much that I thought I started my period again. As the day wore on, I got more locked up in the pelvic and low back region again. I had to take 600mg Advil, then half a Norco, by 12pm.

My S.O. convinced me to see a GYN TODAY, so I called and got an appointment.

At the doctor’s office, I got a transvaginal ultrasound done (I’m a serious veteran of that wand, now). This ultrasound revealed a 4cm fluid-filled sac on my left ovary. The GYN also noticed a dark spot at back of my uterus; she said it could be the left ovary attached at back of uterus. I had her look at my previous surgery reports. She thinks it is most likely adhesions pulling the left ovary to back of uterus once again, and that I have either a large cyst or an endometrioma on the left ovary.
However, she urged me to go to ER for a doppler ultrasound and a uterine biopsy, because she is concerned about torsion, which can be dangerous, and she is concerned that the cyst is 4cm in size, which is the threshold where doctors get freaked out about cancer.

However, I am going to wait on it, based upon previous experience w/ cysts and endometriomas.
(See http://www.livingwithendometriosis.org/steph/2008/11/status-on-ovarian-cyst/
and
http://www.livingwithendometriosis.org/steph/category/ovarian-cysts/)

I also told the doctor I’m not comfortable going to E.R. because of an incident once where I went to the E.R. and instead of listening to me and reading my surgery reports, and just making me comfortable with an IV of drugs, they made me wait the pain out, then forced a pelvic exam, stirring up the bees nest again.

Today’s GYN doctor said that as a patient, I have the right to refuse a pelvic exam and ask only for the doppler ultrasound. She says I can request that first and then opt to have a pelvic afterwards, if something significant is found on ultrasound.

Just to make her stop trying to sway me, I did promise the GYN that if the pain gets any worse, I will go to the E.R. and request the doppler ultrasound.

I am feeling very defeated today at today’s news.

Not a day goes by where I don’t curse myself for not sticking to a caffeine-free and sugar-free diet since my last surgery in 2010. I have been able to successfully cut out red meat and pork, but the other two are just too much to ask for, apparently.
I also know that I cannot blame my diet alone on my pain. I know full well that I have abnormalities on chromosomes 1, 7, 9 and 12, and that endometriosis has been with me since I was created. I know this. I know that diet alone is not going to stop the pain. So I need to have a happy medium – not feel guilty about ingesting caffeine and sugar, but not going hog-wild with the two, either.

But cysts and endometriomas will still happen to me. It’s the nature of endometriosis in general, and specifically the nature of how endo affects MY body.

I’m just tired. I’ve been battling this goddamned illness for 29 YEARS.
I’ve had two surgeries. I don’t want any more surgeries. I know of women who have had over 20 surgeries and they’re STILL not any better. In fact, some are worse off! So I don’t want any further surgery. I just want to try to make it to and through menopause, and see if that burns the disease out.

But dear gods, I am so, so tired.

So it’s been another 30 days, and george decided to show up yesterday. I’ve got my calendar set to 30 day cycles, now. Better than the freak accident of last month, when he showed up at the 19-day mark.

Today is Day 2 and is a bit heavier than yesterday. I went through 4 pads today.

Starting yesterday, I was depressed because I am easily out of breath, heavily fatigued, and in general bloated. This is so not the right time to pick back up on the exercise regimen, but the mental bashing happens every month around the time of my period – guilty at not having spent 3-4 weeks of uptime as a gym rat, working out and getting beefcakey. BAH. Whatever. I’m tired of the self-inflicted guilt trips already.

I’m tired – so tired. I had an asthma attack today – first one in many months – don’t know if it was brought on by weekend campfire, cleaning the tub last night with Tilex, or getting an email from my ex husband asking for his ring back (which sent me into a rage). The wheezing definitely does not help the already feeling out of breath issue. meh.

I have consumed 1,600mg of Advil to quell the pain today, and I used my rice heating pad at work. I have already added 100mg of gabapentin daily to make 300mg/day while in the endo flare. I hope I am not in any more pain tomorrow than I was in today. If I start missing work again, this will pile more guilt and fear on me, since I’m supposed to take a head teaching position come end of August.

Ugh. I can feel it – it’s getting heavier. I’m going to bed.

I continue to marvel at the lack of being bedridden since starting on Gabapentin.

My most recent endo pain flare began last week, with intermittent stinging pain in the uterus and left ovary, which lasted for a couple of days.

Then, without warning, george showed up yesterday, a day earlier than I expected. Then the crushing fatigue set in.

I consumed 1,200mg of Ibuprofen yesterday, and another 1,200mg today, and managed to get through the work day. I have gone to bed early for the past two nights – I’m in bed now and will be heading to sleep very soon. The full body fatigue is as I said crushing, and it is a symptom of endometriosis.

Ya know, I have a rant.

One of the big things my ex told me he was leaving me for was because “you have a need to let people know you’re in pain, all the time.”
He was referring to me posting when I’m having an endo flare, about me having specific friends who also suffer with endo whom I can relate with, and my ongoing endo blog.

What also really pisses me off is… had I listened to my doctor years ago, and started taking Gabapentin, I might not have been in this divorce boat, because I’d not be bedridden and therefore not such an invalid in my husband’s eyes.

I have suffered shaming and guilt all of my life – first through my parents, then with the endo, and now with my ex. Part of my rage is because he shamed me by having not just an affair, but holding it in my face, in the clubs, for my friends to see and ask me about. He lied to me when questioned. He lied for months until he got sloppy. And then he cites one of the reasons for leaving me was that he doesn’t like me being vocal about my illness.

So instead of being shamed to silence, I will remind the world of my blog’s name: I WILL NOT SUFFER IN SILENCE.

More to the point, I will react like O Ren Ishii upon one’s attempt to shame me into silence.
He got publicly castrated and financially burdened.

I had a lot of pre-george pain this cycle, to the point where I was taking over 1,000mg of ibuprofen to get through the day.

I had intermittent right side ovarian stabbing pains all day on Tuesday, January 24.

On Wednesday evening, January 25, I got a sudden droning headache, shivers, 
G.I. issues, crushing fatigue, runny nose. But because I have allergies, it could EITHER have been a food reaction OR a virus.
 People are dropping like flies at work from the stomach flu and bronchitis.
Interesting to note; the crushing fatigue started before dinner. Everything else began during dinner.
So was it a combo of PMS and fighting off a virus, PMS and food reaction, or just PMS?

On Thursday, January 26, I woke feeling much better. However, by afternoon that day, I had the distinct feeling of adhesions pulling deep inside my abdomen. I forget what side; I want to say it was the right side. I had forgotten to record it til Sunday in my calendar. According to facebook, I ate 1,200mg Advil to get through the day on Thursday.

On Friday, I was so busy that I don’t remember if I was having intermittent cramping. It was daycare day at school, and parent/teacher conferences were happening. I was floating from the preschool yard to the elementary yard to parent conferences all day long. Then I picked up one of my students after work and babysat him and his brother til 9:30pm that night.

The next day, on Saturday, January 28, I experienced mild uterine cramping. I chose to drink with friends rather than take any pain meds, because it was an all-day birthday gathering for one of my friends. I wasn’t ready to admit downtime was coming for me. I still wanted to play. I never got drunk that day, but I did have five drinks over the course of about 7 hours. I paced each drink and also consumed water.

I was not hungover on Sunday – like I said, I never got drunk. Sunday however was brutal. I experienced moderate uterine fullness and soreness, and spent the entire day on the couch near tears from the pain. My entire lower back was on fire, and deep inside my pelvis there was a volcano of death brewing. 

I took 800mg Advil, half a Tylenol 3, stretched slowly in doorways, used my TheraCane on the lower back, and used heating pads. I was close to having an emotional meltdown, because my period hadn’t even started, and yet I was in so much pain. Later, I dug into the Tylenol 3, which helped, so I took half pills of that for the rest of the day.

I had 15 pain-free days in January (non-consecutive). The good news though is that nine of those 15 were consecutive.

George arrived on time on Monday, January 30. I’d like to note that January is a “Blue Moon” menstrual month for me, since I got george twice (January 5 and January 30).

Sunday night I had gone to bed nauseous and expecting to get george during the night. Thankfully, I awoke on Monday with minimal pain and no nausea, so I went in to work. Of course, by the time I was leaving for work, the pain and nausea set back in. I was able to make it through the day on 1,100mg of Advil, a hamster bladder, and some whining.

On Tuesday, January 31, I wrote in facebook:
“So is it bad that I’ve been sitting here for the past 43 minutes, waiting for the pain to stop so I can eat food and get ready to go to work?

I guess the 800mg of Advil for breakfast so far didn’t do the trick.

I have 30 minutes before I have to leave for work, but I need to make the judgement call in the next 10 minutes in order to attempt to find substitutes for the day.”

Just under an hour later, I wrote, “Can’t find substitute – still short-staffed. Going in with heating pads strapped to my body like incendiary devices. Hoping for the best. I may very likely have to take a half of a Tylenol 3 on the job just to get through.”

I tried 800mg Advil, then 3 hours later I took 600mg more Advil to no avail, then a protein bar and half Tylenol 3. Finally, the extended care supervisor found some staff to juggle, and gently pushed me out the door around 11:20am. She’s super empathetic and in general awesome that way.

The pain hovered between 6.5 and 7.5 on the pain scale all day and all evening. I saw that I still had some Vicoprofen in the medicine cabinet, so I decided to give it a try again, since the Tylenol 3 didn’t appear to be dulling the pain enough for me. I took half a Vicoprofen and half a Robaxin muscle relaxer I also had left in the cabinet. The pain during this cycle has been centered low on the uterus and pressing into the bowels through the anus. It’s enough to make me whine and cry like a three-year-old. It’s been REALLY brutal.
Tuesday night, I was in bed before 9pm because of the strength of the medications I had taken.

In the middle of the night (3am), I woke from a crazy dream in time to find myself bleeding through my bedclothes. George had circumvented the thick overnight pad and went through my underwear and pajama bottoms to the bed. I had to change my clothes but was not about to change the bedsheets at three in the morning! Thankfully the bed wasn’t a disaster.
Wednesday morning, I awoke with heavy flow, nausea and grinding uterine pain. Thankfully, the woman I had asked the night before to sub got back to me and said she would come in. I took another half vicoprofen and half robaxin pill. Within 20 minutes, maybe less, I was higher than a kite, so I went back to bed. I was fine as long as I was bedridden. If I tried to get up, I was super dizzy and cranky from the medication.

The pain hit me again four hours later, so around 10:30am I took a half vicoprofen and half robaxin. Once again, it took roughly 20 minutes and I was higher than a kite from the meds. This time, however, I decided I was just DONE being so stoned. I was done being bedridden, and now I was depressed over it, because I couldn’t just stop being high. And besides, the pain was leaking through the meds – just as it had done with the Tylenol 3.

That’s when my memory kicked in – didn’t I have a problem with vicoprofen in the past? I turned to my own journal, knowing full well I’d find out that I had a big problem with vicoprofen. OH LOOK, THERE IT IS…
http://www.livingwithendometriosis.org/steph/2009/10/vicoprofen-review/

And so I spent much of the day stoned – trying to leech the meds out of my system. I took only Advil for the rest of the day and the pain crept back in, but I was adamant that I did not want to take any more opiates or narcotics til the bleariness of the vicoprofen wore off. And here I am, at 6:15pm, STILL FUZZY from that shit!!!

All I can do is smack my forehead and label the bottle THIS WILL KILL YOU or some other means of avoidance. I don’t want to throw the stuff away, because in case of emergency, I’d rather have something in the house.

Now…going back to the end-of-January pain cycle. I was saying it was really painful pre-george.

My question is, am I having a bad pain cycle because of the stress at work during the last two weeks of January (parent observations, prep for report cards, and parent conferences)

OR

am I having a bad pain cycle because I chose to drink with friends two days before george was due?

OR

am I having a bad pain cycle because of BOTH the stress and the drinking?

OR

am I having a bad pain cycle for no reason other than It’s Just Endometriosis?

It’s my age-old question, steeped with guilt over the possibility that I am doing the wrong thing to bring more pain.

Whatever the reason or lack of reasoning, the fact is that in the new year, 13 months after surgery, I am still missing work and still on occasion bedridden from endometriosis.

I was bedridden one month after my surgery when the first real menstrual cycle hit. I was bedridden nine months after surgery.
I was bedridden 10 and 12 months after surgery.

The good news is that since my surgery in 2010, I was only bedridden for FOUR cycles, and only couch-ridden during TWO cycles out of 14 cycles total in the year 2011.
That’s much better than I was doing before surgery, where I was bedridden nearly every cycle of the year.

Doing the numbers helps me keep focus, helps me keep a semblance of morale up.

I’ll continue to track bedridden times through the year 2011 and see if I’m edging back towards pre-surgery illness. I’ll continue to tweak my diet, even though overall, dietary changes have not in my opinion shown vast improvement to the overall pain level during each cycle. If I don’t keep doing something to fight, then there’ll be no reason to fight, and the endo really will consume me.

My workplace, some friends and family, and total strangers will not see any improvement in my condition. I see little fluctuations that to me are major. I must continue to point them out so you can see how major in the scope of my illness these small changes are, and why I must keep fighting.

While many of my friends get to sleep in on a Saturday morning, or get to enjoy the Lunar eclipse this morning, I get to be awakened from slumber with such pain that leaves me stupefied with my mouth agape as I stagger about in the dark to get my heating pad and medicine.

Before I can take my medicine, I have to eat something, and all the while, the pain grows ever more intense, and all I can think while being up before the sun on a weekend is, “at least I was able to finish the work week before the endometriosis flare went full bore”.

But I really want to see the Lunar eclipse, and I can’t even get several blocks down to the parking garage to get an elevated view of town because of the pain I’m in, though I’m reeeeeally tempted. Me, trying to walk a mere 4.5 blocks, putting one foot in front of the other, with radiating nerve pain. Or…me, getting into my go-kart of a car, and pressing the accelerator with the radiating pelvic nerve pain at 7.5 on the pain scale…when I’m nauseous from the pain by any slight movement. =(

Yes, I’m wallowing in the pain and depression of being a dependent invalid at the moment.

One of my friends told me she is jealous that my debilitating pain is at least localised and cyclical, which means I have windows of time which I can predict there will be little to no pain. I have critical windows of time to live my life and not worry about every minute consequence an action or a food or a drink will have on my pain level, while she cannot predict the pain – it strikes anywhere in her body at anytime, and so often that she is on medical disability and can no longer work.

While I am sad that many people, including women with the same condition I have (endometriosis) are disabled by the pain full time, it does not lessen the reality of my own anguish, which I have been suffering for 26 years. Before surgery, I did apply for disability and was denied, because although I could barely work, I could still work 14 (non-consecutive) days in a month. As long as you can work 14 days out of a month, you’re not sick or disabled enough to qualify for disability insurance.

I have had two surgeries 3 years apart, to minimal effect on the pain. I am still bedridden from the pain. I am still missing work from the pain. I am still taking narcotics for the pain. Doctors still do not know how to control or manage the pain. There is still no cure or proper treatment for endometriosis. Doctors are still arguing over theories of what even causes endometriosis, while millions of women world wide suffer a pain so severe that most men would die of in minutes if they had the same condition, because the pain is akin to going into labor every 2 – 4 weeks for 26 to 35 years in a row. Hell, there are women with endometriosis who have said that actual labor and childbirth was LESS painful than the endometriosis pain, I kid you not.

Cyclical pain or full time pain, it does not matter. The pain is real, and it is debilitating, and it is crushing. It slams one into a depressed mental state faster than you can say “ouch”, and the depression sinks one to the depths of the murk so fast, that if you don’t pay attention, you might miss critical cues telling you that the person is finally just DONE enduring all this pain.

Endometriosis may not kill us directly, but the illness is always in danger of killing us indirectly. There is no benefit to feeling jealous over someone who “only” has cyclical pain. Jealousy diminishes the harsh reality of the sufferer, making one feel a sense of survivor guilt, making the emotional pain even harder to bear.

So I wallow in my very real pain as it strikes me early this morning, while I miss a beautiful Lunar eclipse and wait for 2 Tylenol 3 to even try to make a dent in the pain, while I sit on the couch with a heating pad on my broken body and breathe those shallow breaths that one breathes when in so much pain, while trying to remind myself to do relaxation techniques and breathing exercises to get through this flare.

I want the pain to stop. I want it all to stop.

(Reposted from facebook). The date today is actually Feb. 1, 2012, but I went back in time to put this journal entry as a followup to the Tired Of Always Having To Play Catch-up entry.

Morning Dream
October 20, 2011 at 6:01 am
I had been hanging out with Patricia somewhere on the peninsula, when it was time to return home. Something happened, where my car broke down or I missed my train or something. I called Catie, who agreed to come pick me up. I gave Catie the wrong directions, and we ended up going North on Highway 101 instead of South. We didn’t want to get caught up in San Francisco traffic. Catie knew a short cut, and suddenly we were on a skyway. Catie was no longer driving; we were alternately on a fast rail transport and in the back seat of a limo, heading along this skyway which ran along Highway 101 and the 280 interchange.

Suddenly there was a 3-year-old boy with us in the limousine; he had dark brown wavy hair and reminded me of a boy at the school I work at, but in the dream he was Catie’s second son. I don’t remember his name. He was walking around in the back of this limo, and for a moment stood in front of my sitting body. He placed his hands on my knees, put his head on my lap, like children do when being affectionate. He had been talking with me about something while I also had conversation with Catie.

I got a cramp, and my face twisted in pain. The child looked up at me in pure empathy and asked, “You feeweeng otay, Miss Step?”

I looked into the child’s caring eyes and softened my face. I smiled and replied, “Yes, I’m feeling better, now.” I tousled the child’s hair, and he smiled. Then I added, “Miss Steph needs to take her medication.”

Right at that point, I woke from the dream with level 8 endometriosis pain. I managed to get out of bed. It was 4:27am. I found and took a whole Tylenol 3 and promptly burst into tears from the pain.

I put myself back to bed with the heating pad, and laid there gritting teeth, moaning in pain, and doing breathing exercises for the next 30 to 40 minutes until the drugs kicked in. Finally, I was able to drift off to sleep again for a bit.

During sleep, my brain has always found creative ways to tell me I need to wake up to take care of myself.

 
October 20, 2011 at 11:58 am
I’ve already consumed 1,400mg ibuprofen today while barely maintaining at work. Severely short-staffed, otherwise I’d be home in bed. :(

 
October 20, 2011 at 2:41 pm
An actual 4.0 earthquake hit while we were performing our classroom’s first earthquake drill of the year, on the same day as the California ShakeOut drill. Much of the state did their drill at 10:20am, but we put ours off til the afternoon. The director came into the classroom and told us to keep the students under the desks, as we’d had an earthquake. She had no idea we didn’t feel the quake, and had no idea we were doing a drill. Some classrooms did feel the quake and dove under desks. So strange that we did not feel it!
Once the children learned there really had been an earthquake, some began to cry as we were given orders to evacuate the building. The school was given a quick examination, and officials let us back in. We talked about the quake, and the children finished off the day. I cannot remember what my pain level was through all of that, or if adrenaline set in from all the chaos.

 
October 20, 2011 at 8:16 pm
A 3.8 earthquake hit while my husband and I sat on the couch, either watching TV or eating dinner or both. I was drugged up on Tylenol 3 and still in pain from endo. I posted to facebook, “2nd quake in a day – as big as the first. I wanna go home!!!”
By ‘home’, I meant Michigan.

 
October 21, 2011 at 12:41 am
My husband had come into the bedroom to say goodnight. I was laying there in bed, all drugged to the hilt, talking with my husband, when another earthquake hit.
I couldn’t take it anymore, I burst into panicked tears, sobbing that I’m bedridden, and earthquakes keep happening, and how am I to get to safety if The Big One hits next, etc…my husband looked at me like I’d lost my mind. I was grabbing for his arms to pull him close to me for protection. I explained that we’d just had another earthquake. He didn’t believe me, so I grabbed my iPhone, which thankfully was right next to me, and called up the USGS website. Sure enough, a 2.1 earthquake had just occurred, in the same spot as the other two quakes. Now, a 2.1 is a minor quake – most people might not even feel it. This is the smallest quake I have ever felt, but I think I was in a heightened state of awareness/sensitivity that night. Three in one day freaked me the f**k out, I will tell you right here and now.

Think about it for a moment.

You’re bedridden with an incurable chronic pain illness, and a natural disaster occurs. You may or may not have one person with you at that moment. You are unable to react in a quick and potentially life-saving manner to get yourself to shelter. This was the first time in my life that I saw my illness as something that could kill me, because in my worst state of pain, I could DIE from not being able to move fast enough to safety.
That thought made me want to live in a bunker and never chance going out during an endo flare ever again.

I don’t know how I did it – maybe it was all the pain medication – but I was finally able to get to sleep that night, and as per my usual, I was stubborn the next morning and tried to go in to work.

On October 21, I had finished more than half of my work day before the pain ramped up around 3pm. I had been taking Ibuprofen all day to manage the pain, but just as my class let out for afternoon daycare, the pain spiked up and I nearly blacked out from blood loss and pain. Here’s what I wrote in facebook:

“My workplace is severely short staffed and my head teacher is always bitter about me taking time off due to the pain. Today the workplace got to see what it’s like when I don’t stay home on bedrest like I’m supposed to during an endometriosis flare. I nearly collapsed on a child while fastening him into his carseat at the end of the day. What happened was I was blacking out from all the blood loss and pain. Then I lost my balance and nearly fell over before opening the door of the next car.
The extended care supervisor thankfully is empathetic enough to sense when I’m in trouble, and took me by the arm, helping me to get my things. Then the owner of the school, also very kind, insisted on driving me home.
Now I take Tylenol 3 and go fall over safely in a bed.”

The next day thankfully was a weekend, not a work day. Again, my posts to facebook:

October 22, 2011 at 11:47 am
Heading into another endometriosis flare, after a morning of minimal pain. Just popped the Tylenol 3. The pain is ramping up faster than the drug will have time to kick in. I was stubborn AGAIN and did not overlap my meds. When will I learn; just because I was not in pain doesn’t mean I wouldn’t be soon.

October 22, 2011 at 12:12 pm
pain… winning

October 22, 2011 at 1:04 pm
guilt…pain…tears…frustration.

October 22, 2011 at 2:00 pm
Dissociation from pain finally kicked in after over an hour. I’m on 1 Tylenol 3 and 600mg Ibuprofen.

For those who ask why I only take Tylenol 3 and Ibuprofen for the pain, please see the growing list of all drugs (and therapies) I’ve tried to manage the pain.

George arrived on Monday, September 26th. The pain was minimal and well managed with Ibuprofen, and I was able to work a full day.

However, Day 2 of my cycle had things ramping up considerably. I woke with moderate pain and bleeding, but still went to work because it was “parent observation week”, and my head teacher made it quite clear that she needed me there, and was not pleased that my health chose such an inopportune time to not be cooperative.

These are not her exact words, but damned near close. When I had given her a heads-up about my health the Friday before parent observation week that my next endo flare was due, her exact behaviour and words were to let out a tsk, a fed-up loud sigh, drop her shoulders and give a look of disdain as she exclaimed, “You’ve GOTTA be kidding me.”

She later apologised, but told me she was feeling overwhelmed/anxious at the prospect of anyone else being in the room with her that week, because the children would be more out of sorts with a substitute around, and she did not want the parents observing the children under those circumstances.

I understood where she was coming from, but I did not appreciate the giant guilt trip because of her anxieties. Her guilt trip is what led me to make the choice to be there to support her, thus pushing the limits of what my body could handle during an endometriosis flare.

So on the second day of parent observation week, I managed my pain with 1,600mg of ibuprofen. Here’s me first thing in the morning, popping 800mg of Ibuprofen in an attempt to get the pain under control (it worked):

Popping 800mg Ibuprofen before work

I stayed for the whole school day, more than fulfilling my obligation to my head teacher, since parent observation hours were over at 11am. However, there were resource classes that I needed to take the children to (library and computer class), so I stayed. Then there was naptime, so I stayed. At the end of the regular school day, before extended care started, I experienced a sudden flare of pain and sympyoms, right after consuming my last dose of meds.

Dammit, I tried to do overlap but the pain snuck in, anyway. My whole body went weak, and I got dizzy. It became hard to walk. I felt like lead for hours. This is ‘normal’ for endometriosis. The lead weight and crushing fatigue sucks. I know part of the fatigue is from all the Advil I was taking, but at least the pain never got above a 6 on the pain scale that day.

I went home and slept for 4 hours.

I then woke in a panic – it was 7:30 and I had not set my alarm! I scrambled out of bed, heart racing, thinking I would be late for work! Then my husband told me it’s PM, not AM.

And I hadn’t even had any Tylenol 3 that day. I was just that screwed up from the pain and fatigue. I was up for a couple of hours and then went back to bed.

I woke in searing pain the following morning, on September 28, just before 5am. I had nausea with the pain. I gingerly got out of bed and took half a Tylenol 3, because I needed to be up for work in the next hour and a half. It took about 35 minutes for the medicine to kick in, with me suffering there in bed the entire time. The Tylenol 3 mostly managed the pain once it did kick in. When my alarm went off, I got up for work and took a shower. I experienced heavy bleeding and moderate pain.
In a daze, I ate breakfast, and went to work. I took a total of 1,400mg of ibuprofen that day, and worked a full day in pain, because of the above-mentioned parent observation week.

Thursday, September 29:
Once again, I was awakened by searing endometriosis pain. This time it was 1am. I popped a Tylenol 3 and 600mg Ibuprofen, and waited for it to kick in. By 2am, I was dissociated enough from the pain to go back to bed. My alarm went of four hours later.
I still required 1,200mg additional ibuprofen to get through the workday. I was very tired and crampy, despite the bleeding tapering off to spotting.

Friday, September 30:
This was a daycare-only workday, as the head teachers were conducting parent conferences all day. This is usually loud and high energy, and wild, as three classrooms’ worth of children are condensed into one large classroom for the day. Despite abundant assistant teachers and teacher-trained assistants in the room, it’s like trying to get monkeys to come down off the chandeliers on a daycare-only day. I had low energy and was spotting, but I managed to get through the work day. I did not take any medication that day, because I was fed up with how much I’d taken all week.

Saturday, October 1:
I was still experiencing low energy post cycle, but I was expected to be at a Child Development refresher class all day. I accomplished this with my inner child kicking and screaming the entire time.

Sunday, October 2:
As happened after my last menstrual cycle, my anxiety was way up after this cycle. It’s not normal, but it’s happened twice in a row, now. Hmmm. I had to do another full day in the Child Development refresher class, and woke up with swollen eyes. As the day progressed, my right eye got worse. By 2:30pm, half of the eye was blood red.
Wonderful. I’d developed pink eye – and likely got it from training center the day before. My pupil in the right eye was bigger than in my left eye by 6pm. I called Kaiser Permanente, who freaked out about the pupil because of my age, and they urged me to go to an urgent care Kaiser center. This, after my whole weekend was shot by being in a training class, and now I have to sit in an ER? I was NOT happy. The result: contagious pink eye. I was given antibiotic drops, which I had to take for 10 miserable days.

Monday, October 3:
I missed work due to the pink eye. Had I not gone to the training class, which was foisted upon me last minute, I would not have gotten pink eye, and I would not have missed work. On top of that, I experienced left side stabby ovarian pain all day, despite the fact that my period had just ended. How’s that for a kick while I’m down?

My immune system hates me. I wish I could fire it. I’d pushed it to its limit by working during an endo flare, and the pink eye was able to sneak in. It’s always something.

Monday, January 10, 2011

4:19am: “WHY am I awake”.

I wondered if it was because I had drank alcohol throughout the day on Sunday. We had gone wine tasting for my husband’s birthday.

“My legs are bouncing and my brain is spinning and my stomach is gurgling and my heart feels like it is pounding, even though my pulse is normal. I need to be “sleeping with prince valium” I think.” – Monday at 5:11am

I took 1mg Ativan and went back to bed at 5:30am and slept til after 11am. I woke groggy, of course.

So it was Monday, the start of another work week, and I was still home recovering from surgery. The week off was approved long ago, but I felt guilty for being out of work anyway, because I had not been in constant pain for over a week at that point.

Simple movements were still painful, and I was still easily fatigued, so I reluctantly adhered to the 6-week recovery recommendation from my surgeon. I didn’t want to irritate my surgical wounds by going back to work too soon, since preschoolers have no concept of restraint when it comes to their physical activity.

I spent Monday finishing the first semester self review for work, and I emailed it off to my director at school.

Monday night, we went out to dinner with my husband’s father and step-mother. It was quaint. I had more alcohol to drink. Why have I been drinking so much alcohol? I have blatantly violated my post-op rules to myself! Why is my will so weak?

After dinner, my husband, still on a birthday high, wanted to go out to our favourite nightclub. What the heck, we’re both off work, right? Why not? I was zombified but my hubby really wanted to go, and he hadn’t arranged for any other buddies to join him. So I went. I thought, “Hey, at least I can practice my stair climbing!”
I took .5mg Ativan before going out, because my nerves and guilt ramped up. Anytime I’ve done something enjoyable during my time off work for surgery recovery, I have felt guilty about it, as though I’m somehow cheating the system or playing hooky on purpose from work. It’s pretty lame that I am capable of so much guilt.

Once we were at the club, my mood elevated. It was good to be among my people again! I was all dressed up and the music and scenery were sweet heaven on my ears and eyes. Because I had been active and out and about all weekend, I decided to take the plunge that night. I danced!

Of course, I overdid it, and before long, I was holding my stomach and breathing rapidly in panicked fashion because of the abdominal cramps that I’d set off. But I refused to take my medication. I’d been too afraid to take Tylenol 3 since December 27th, when I had the “oh crap I’ve killed my liver” scare.

I drank a lot of water that night, and crawled into bed, whimpering, as soon as we got home.

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 Рbaked salmon with mashed potatoes and saut̩ed 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.

Day 20: Thursday, January 6, 2011

I swear, all I wrote on my notes for that day was that I was able to lay on my stomach for half an hour while I napped. I was really tired all day that day. I don’t remember anything else. That’s what happens when I get behind by almost a week!

Day 21: Friday, January 7, 2011
I had lots of energy that day, and used it to get some paperwork done, work on my first semester self-evaluation report, and to get some exercise in.

At 2pm, I climbed the stairs to the split Victorian house we live in. I climbed the stairs three times! The pain hit once I got up to the top of the stairs the third time, so I called it a day for exercise. Sadly, I experienced increased pain and discharge within 10 minutes of stair climbing. :(
I took 600mg Ibuprofen for the pain.

Despite the cramping from the stair climbing, I began feeling guilty for missing work, even though I still had the entire next week slated to be off work. I was itching to get back and I was feeling like I was milking this whole time off thing. So I called my head teacher after she’d gone home for the day, and spoke with her. I also phoned the director on her cell phone. I even spoke with the school secretary. All three of ’em said I need to take the time off to let my body heal up, and not come back to work too soon and risk injuring my surgical incisions or worse, tearing anything inside.
We agreed that because my return date was the same date that my next period is due, that I would also err on the side of caution and take part of, if not all of that week off, too. That means I’m off work for six weeks instead of four. Of course, six weeks is what my surgeon wanted me off work for, anyway. I am the one who originally thought three to four weeks would be sufficient.

Taking more time off work brings up my old PTSD issue, because after my first surgery, I was fired from a job when they thought I’d be ‘cured’, even though I told them from before surgery, after surgery and each time they brought it up that there is no cure for my condition, and that surgery is not a guarantee for pain relief. All we can ever do is hope for the best. Endometriosis is brutal. It sucks. It’s not fair. IT’S NOT MY FAULT THAT I WAS BORN WITH IT.

I DIDN’T BRING THIS DAMNED DISEASE UPON MYSELF.

Friday night, my husband and I went to a nightclub to celebrate a friend’s birthday. It was the first time I’d set foot inside a nightclub, but not a bar, since surgery. The bar was on January 4 for another friend’s birthday. This night, it would be a full on dance club venue, and I would be tempted to see if my body could dance.
We got there and the music was nothing I’d like to dance to, anyway. My husband took my coat upstairs to coat check, and I hung out with friends and acquaintances until he returned. Because I didn’t really know anyone, naturally I wanted a drink. Old habits never die. I ended up getting pretty drunk that night. This is the third time I’d had alcohol since surgery.
I didn’t make an ass out of myself or anything, but I do feel guilty that I drank so much. I was indeed a bit hungover the next day.

?, My husband, me, Caroline.

Sharon and me