Last gasp?

Here’s hoping today is the end of it for another 28 days!

The bleeding and pain subsided overnight, but returned with a vengeance around 10:30am today. I got to the point of wanting to cry ‘Uncle’, and then the pain began to dissipate, thanks to 800mg Ibuprofen and another 100mg of Gabapentin kicking in.

I had some REALLY good news yesterday on the job front – I’m not allowed to say much at the moment. I’m hoping this turns out well, that’s all I can say!

On the depression front, I’m still struggling to keep myself groomed and fed, and employed due to the depression. I’m on medication to help (the Gabapentin does double-time for mood stabilisation and neuropathy relief, and I’m also on Zyprexa for depression/anxiety).

Divorce sucks. People suck. Endometriosis sucks. Part of the reason he told me he left me was because of this stupid illness. :(

May 2013 cycle

The endo flare began on Sunday, and presented with full body exhaustion. Granted, I had gone out dancing on Friday, ran around on an aircraft carrier for 7 hours on Saturday, then went dancing Saturday night.
On Sunday, I slept for 14 hours, got up for 4 hours, then went back to bed for another 10 hours.
When I awoke on Monday, the pain and bleeding began.

Today is Day 2 of the latest cycle. I have been no higher than a 6 on the pain scale, but I am still thoroughly exhausted and body-fatigued.
I took half a Tylenol 3 for the pain last night, because I had to go see my shrink when I just wanted to be in bed, and the drive to and from my shrink’s office knocked my innards all over the place (I drive a 16-year-old Dodge Neon, which is like a go-kart).

I have been following my psychiatrist’s advice and taking an extra pill per day of Gabapentin during my endo flares – I’m convinced it really is helping to reduce the pain.

I went to work yesterday and today, and made it through the entire day. Hopefully, tomorrow the flare will begin to subside, and then I’m golden again til next cycle.

The pre-menstrual cramping and symptoms have been nearly ommitted by taking Gabapentin, so for the past three months, I’ve been surprised when george does show up. Though Monday morning I knew when I got out of bed, I’d be greeted by the bastard, cuz I was cramping upon waking.

Today’s pain has consisted of gnawing lower front uterine cramps, as well as intermittent stabbing left side ovarian pain. Great. The endo is returning for a third time to the left ovary. Get thee to menopause, stat! No more surgeries!!

Pain at work

…Annnnd a pain flare, 7 on the pain scale, shaky and nauseous, hits right before a school assembly. Kill me now.

12:30pm – I pounded 800mg of Ibuprofen on the way to work, and it kicked in by the time I was leading the children to their assembly. However, I had to be up and down, sitting or kneeling on the ground, and it was still quite painful. Add to that a woman with a broken foot seated next to me, and so I could not navigate around her with ease in order to sit in front of the class to direct them during their assembly song. As a result, the children did poorly, and I got in trouble from my head teacher for not moving back and forth from next to the students to in front of the students and back again. I told her about my pain and about the woman’s broken foot in my way, but she was still upset. Of course, she herself could have gone in front of the children, now, couldn’t she?
One of the parents (a friend’s significant other) told me not to worry about it, but I am. The whole ordeal was just bad, because the owner of the school’s husband insisted that my first and second graders learn and sing California Dreamin’ by The Mamas and the Papas.
WHY. WHY did my head teacher allow that song for a Secretary’s Day assembly? I went to her weeks ago vetoing the song, and pleading with her to confront the guy and ask for another song. But she told me she picks her battles with him, and caved in for that one, but won’t cave to him for the graduation songs. Of course, SHE picked the graduation song to be You’ve Got A Friend by James Taylor. It’s a more poppy version by another artist, but still, it’s that song.

I meant to rant about my pain, and it turned into a rant about work politics. But there you have it. And I’ve popped another 800mg of Ibuprofen for the pain to keep it at bay.

Trapped on a field trip

Today my students went to Chabot Space & Science Center for a field trip.

Of course, this is when the pain level decided to reach a 7 on the pain scale. I had to use the elevator because I could no longer navigate stairs. My legs were at first weak and shaky, and then the radiating nerve pain began down the outer side of my right leg. This of course was happening alongside the intermittent stabbing uterine and ovarian pain. There were some excruciating pain moments, resulting in me grimacing.

Thankfully the facility has an elevator! Thankfully the head teacher was also on the field trip, as were five parents who helped drive everyone. Today was a heavy day, so I was in the bathroom a lot. I missed out on the Bill Nye science lab as a result. Meh. I’ll have to go back again with friends.

For visual, here’s what my pain looked like – it’s a 6.5 on the Allie Brosh pain scale:

alliebroshpainface6

But hey! I’m still not bedridden! Go Gabapentin!

Also, I’d like to note that I have not taken Tylenol 3 for the past two cycles at least, nor have I sought to refill my prescription.

I’d like to further note that since clearing my body of regular Tylenol 3 intake, and starting on Gabapentin, my allergies, atopic dermatitis, asthma and multiple chemical sensitivity have backed way off. So there it is – after years of being on Tylenol 3, I’d simply overloaded my kidneys and liver, and just needed a good detox.

Funny how being forcibly hospitalised and medicated can actually be turned around to be a good thing.

But I’m still bitter at how it all had to go down.

Update on endo flares

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.

My cycle is longer since surgery.

It seems my period is late every month!

I just looked back through my calendar dating back to surgery on 12/17/10, and I see a trend.

My cycle is no longer 25 days.

It’s more like 27 or 28 days again.

It’s been 16 years since I’ve had a cycle of that length. :(

I’ve had anxiety for the past two days, thinking george was late. After all, I have this week off of work BECAUSE george was due.

In the summer time, the school I work for reduces staff hours, because we do not have full enrollment. The director tries to give everyone a chance to work at least half the summer, so a lot of schedule shuffling goes on to try to make it fair enough for everyone. Because of my known health condition, the director simply does not schedule me during the weeks that I could miss so much as a day of work from endo pain, so that another teacher who wants a full week can have it. I understand the rationale. I’m just glad they don’t do this to me throughout the regular school year.

So this week was slated off work, because george was due on Monday.

Well, here we are at Wednesday, and still no george, and I ended up giving myself an asthma attack over it this morning, due to how anxious I am. I kept asking my husband if there’s any way I could be pregnant, and he keeps reassuring me there’s no way.

“Wait. Asthma?”

Yep! I’ll tell you all about it in another post.

Late February cycle

I had about 12 consecutive pain-free days from last cycle til this one.

I began getting intermittent uterine and ovarian cramping on February 16, when I was feeling sad and missing my grandmother, as it was her birthday. She’s been gone for 25 years, but I still grieve for her.

Two days later, I spent the day grieving for a friend who’s been gone for 9 years. Every year around the time of his death, I get little reminders seemingly from beyond, that he’s still with us somehow. Because I was sad, I got cramps again.

A few days later, my spouse returned from a weekend-long gaming convention, and I was happy to see him, so we were intimate. The next day, I experienced either dyspareunia or premenstrual cramping, and then a day later (yesterday), george appeared two days early.

The thing is, I think I brought it upon myself. I’ve had a rough month emotionally, as I’ve been really sad for people who have died. And then I had a really bad day at work, wherein I got emotionally involved with a child who was having tantrums. When I tried to lead her out of the room so as not to cause further disturbance to the class, she had a big meltdown. I picked her up to expedite the removal from the class, and she wriggled free and fell to the floor screaming. My face was beet red with embarrassment and also with anger. In my effort to do the right thing (get her out so as not to disturb the lesson taking place in the classroom), it actually sped up the child’s complete meltdown.

Within minutes, I felt a trickle and a hot sear of pain, and I knew that I had made not one but two bad choices: taking the child out of class and causing myself a release of stress and anger hormones, which flooded my system and started the endo flare.

And I was supposed to be the head teacher all this week, as my head teacher is on a family retreat.

As soon as I got the child stabilised emotionally, and made sure the assistant teacher in the class was still running things alright, I called upon the director and the afternoon supervisor for help in finding substitute teachers, in case I could not make it in the next day.

This morning, I woke determined to get SOME work done. I wrote:

Attention: I am going in to work. Endometriosis can DIAF.
I’m the boss, dammit; I call the shots in this body.

I got through 5 hours before the pain and exhaustion took me out of the game. Then I came home and passed out for 3 hours with second round Ibuprofen and heating pad. Outside, we had an unusually warm and sunny winter day – it was in the 70’s, which is weird even for California. In February, it’s supposed to be raining hard all through February.

But because of george, I missed a beautiful sunny day, and I will miss it again tomorrow, too.

I spent the rest of the day today couch-ridden, working on importing endo blog posts over to Facebook.

The pain has been steady throughout the day, and I resorted to taking a half Tylenol 3 pill in the evening.
After dinner, I needed the other half pill. I’ve consumed 2,000mg of Ibuprofen today. The pain has been constant at 7 on the pain scale.

This evening, still in the thick of an endo flare, I counted out the days til the next one.

The next endo flare is due on the anniversary night of one of my favourite night clubs.

I’m seriously thinking of showing up – even if I have to arrive in my wheel chair. I AM SO FURIOUS WITH THIS ILLNESS TAKING JOYFUL EVENTS AWAY FROM ME.

Early February cycle

February 2, 2012
~7:30am
Today is the cautious day. I am moving slowly about the house, trying not to stir up the Endo hornet nest. Gonna try to go to work today.

8:05am
And the doom just ramped up, but I hadn’t arranged for a sub cuz I was sure I’d be able to go in. Now I have to go in and wait for the late morning shift to arrive to hopefully stand in for me. It’s going to be grueling. Why do I do this to myself? Oh yeah, cuz I’m stubborn.

~12pm
barely maintaining on 1,400mg of Advil

~1pm
Today’s my long day. Working til 6pm. Kill me now.

~7pm
Today was brutal, but I survived work on 1,400mg of Ibuprofen and a heating pad. The children were super at helping me out. ♥

February 3, 2012
~11am
Rough day for me today. I thought the endo flare was over, but it returned while at work. Came home sick for the third time this week – just like old times before the last surgery. :(

~6:50pm
Feels later than it is. Normally that would be a good thing, but with all the pain and meds I’ve had today, I just want the day to be over.
> > Nate (my friend): did you rest?
Me: Hah, of course not. I’m stubborn. I have been couch-bound all day, though, does that count?

~11:59pm
Okay, I’m finally giving in and going to bed. I spent the day couch-ridden, but productive. I have gone through most of my stockpile of news articles and research bulletins – I have enough to post one a day for the month of March (National Endometriosis Awareness Month)! Will continue stockpiling research, of course.

February 5, 2012
Saturday was a cautious day for me physically after spending a week w/ an endo flare. I was excited that my body was able to do the Time Warp at the Castro Theatre. HOORAY FOR UPTIME! Time to LIVE LIFE until the next flare, around Feb. 24. I want to go out dancing every Friday, and I’m going to really try to get to another favourite dance club on Mondays right at 9pm as often as I can.

(Later that evening…)
Whoops, I guess I’m not officially in uptime, yet. Had great energy all day, cleaning the kitchen and bathroom. Went grocery shopping with my husband, and on the way out, I zoomed the grocery cart like a giant scooter all the way back to the car. Now my legs are shaky and I feel a bit nauseated. So I’ve been saying for the past few days, “okay body, TOMORROW then.” I say it again. Okay body, TOMORROW then…it will be uptime.

February 6, 2012
You have GOT to be kidding me.

This is the second woman in the last two years to have completely faked an attempted suicide and resulting coma. I now doubt whether she has endometriosis, or any of the listed medical conditions she talks about. Trust is completely destroyed, and now I’m hearing rumour there’s a third. Seriously, I gave these strangers a chance. I accepted them at face value, because they said they go through what I go through with endometriosis. I am ready to unfriend all of them because of three women. I am ready to shut down again on humanity – the way I used to be back in the early to mid 1990s. I was Mean Not Nice. Everybody deserved my wrath. Everybody was guilty until proven innocent, and even then, people got a squint of mistrust. Is that what I need to go back to? I know it’s not, but damn that’s how I feel right now.

Bedridden and missing work again

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.

No work missed so far in 2012 ;)

I made it through work today! It took 1,200mg Ibuprofen and half a muscle relaxer (the back/neck are still locking up, but not all the time), but I made it! YAY!

And then I took my husband out to sushi dinner, cuz today’s his birthday! The owners made him a special dish:

img_3680

 

Now that the endo flare is over, I’m golden until the end of the month. Gotta be strong and adhere to the goals:

  • Go sugar-free again.
  • Do a better job from abstaining from alcohol again.
  • Be serious about gluten-free baking at home, so I cut down on processed foods.
  • Start biking to work every day again.
  • Keep posting more positive entries – what I can do, as opposed to what my limitations are – and post between cycles, as opposed to during or right after an endo flare.

 

I have a few additional goals:

  • See if I can manifest the idea I had recently to gift fellow endo sisters, to share positivity and love.
  • Make a video update on how my life has been since surgery in December, 2010.
  • Finish editing and then upload two more humourous videos I’d done in the past year or so.