I Will Not Suffer In Silence

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.

Every weekend this month has entailed some sort of birthdayness. January and October are big birthday months in my circle!

Saturday, January 7 was dinner with my husband for his birthday. Even though I was in the thick of an endo flare, I still went out to the dinner.

Saturday, January 14 was dinner for our friend D’s birthday, and roller skating for me and my husband afterwards.
I was pain-free that weekend!

Saturday, January 21 was Concrete Blonde in concert, although she cancelled at the last possible second due to being really ill. We got to see the opening bands and then were sent away with many apologies. David J was one of the opening acts. His singing was really awful, and that in itself hurts to say, because he’s one quarter of the godfathers of goth - Bauhaus. His voice is just not there anymore, but he doesn’t want to give up the show. I feel bad for him, I really do.
I was pain-free that night!

Saturday, January 28 was dinner and drinks for our friend W’s birthday. My endo flare had begun, but rather than take 800mg of Ibuprofen, I was stubborn and went without meds so that I could drink booze with my friends. At least the drinking dissociated me from pain that night. Here’s a bunch of us helping our friend celebrate:

 
In summary, I got to enjoy two out of four Saturdays in January, which is average, and unchanged since before surgery. I still only get one to two good weeks out of every month on average, but hey, some of my endo sisters never get to have a good week, so I do live for every healthy moment I get. It’s a lose-lose situation, though. Either you are constantly depressed because you never have any uptime, or you are cyclically depressed because you are dreading the end of any short-lived uptime you do get. Chronic pain is chronic pain - it’s a bitch no matter how much or how little uptime you get with it.

I spent the weekend with friends!

On Friday, I went out dancing with a couple of friends, and we saw more people we know at the club.

 
On Saturday, we met up with D & R at D’s favourite Korean BBQ joint to celebrate his birthday, and then my husband and I drove down to San Jose to go roller skating! It’s been a full year since I last roller skated, and it’s been since middle school for my husband, but we both got on the rink and did our best. I even retrained myself how to cross one foot over the other when taking turns, how to take a tight round turn, and how to get a little speedy on the skates. YAY! These are the skates I bought for myself back in April, 2007, and my husband got me some better wheels for a year or so ago.

Our friend D, the birthday boy

The table behind us is also full of friends for D's birthday

There was a lot of food.

Have some!

 
On Sunday, my husband and I had a nice breakfast with friends J, G, M and D at a local diner, and then we went wine tasting with J & G! When we got to the winery, A & M joined us at the first stop, where we had birthday cake and hung out.

J.J., T & K joined us at the second winery, and T & K came along with us to the third winery. That’s all we had time for, but we had a great day with friends!

My husband and our friend T share the same birth date, so there’s been lots of festivities. :)

Breakfast at Marti's Place

Wine tasting at Irish Monkey Cellars, hosted by Bob, the owner!

Irish Monkey Cellars

Birthday cake for my husband!

Look at all that port! At Westover Winery

T, K and my husband at Chouinard Winery

After 16 consecutive pain-free days, george reared his ugly head once again. The term “pain-free” is really a misnomer, though, because I was in a ton of pain during those 16 days, but it wasn’t endometriosis related. I had a pinched nerve in the neck, which radiated down my left shoulder and arm, and caused much of my upper and mid back to go into spasm. I had little to no mobility of the head without intense pain. The pain also radiated upwards, causing migraines. It all began when I tilted my head back to put in antihistamine eye drops before work on December 14.

The uptime that I would have had for 16 days was completely removed by the pinched nerve. I went through two different muscle relaxers, and was also eating Advil like candy and taking regular doses of Tylenol 3. I was scheduled for physical therapy and potentially a cortisone injection to quell the pain. I bought a TheraCane, which helped only a tiny bit (but having that cane long term is a good idea).

And then, just as I was entering the next menses cycle, with lower back pain ramping up, the upper back and neck pain eased up! Thank goodness, because I can only handle one big pain mess at a time!!

Since the first day of my cycle this month, I have not had any pinched nerve in the neck issues, and I’ve had full mobility back again.

ON TOP of the pinched nerve and the endometriosis, I ALSO developed pink eye for the SIXTH time in three months, because I wore eye makeup with some kind of ingredient in it that hates my eyes. This time mascara was not the culprit - it was black eyeliner with glitter in it, which I wore on New Year’s Eve. The pink eye hit about 36 hours later, on January 2.
Perhaps I had used that eyeliner during one of my other bouts with pink eye, and it was therefore contaminated and reinfected my eye. I don’t know, but I threw it away this time, along with my other eyeliners. Ugh, it’s getting to be too expensive for me to wear makeup, I swear.
I had leftover antibiotic eye drops, so I have been putting those in four times a day for the past week, while dealing with trapped nerve pain (so THAT’S been interesting, having to lay down or lean back, because tilting the head hurt too much) and also dealing with premenstrual cramping.

The cramping had set in on December 30, and was likely the result of me drinking coffee during vacation. Caffeine always kicks up pelvic pain for me. I know better. I was a bad monkey. I could have given myself a few extra days without premenstrual cramps had I just stayed away from the caffeine.
By January 2, I thought for sure george was going to be early. I was urinating more frequently, and felt a fullness in the uterus, so I was checking for bleeding all day Monday and Tuesday. On Tuesday, I actually had no cramps until 8:40pm, when began an increasing stinging pain in my hips, moving inward towards uterus, triggering my bladder.

On Wednesday, I had intermittent pain throughout the day, worsening in the evening when I was at a meeting for a paranormal group that I volunteer for. That night, my entire back from top to bottom was seizing, because I was still also dealing with the pinched nerve pain.

George didn’t actually show up until Thursday - a day late - while I was at work. I had been wearing a pad for a few days, so I was prepared. The low back pain was brutal that day, and was aggravated by all the stooping and bending that I do as a preschool teacher. I ate 2 half pills of muscle relaxers that day, and 800mg Advil gel caps. I looked pretty ill at lunch hour that day, and two teachers commented on it.

On Friday, my head teacher and the two teachers from the previous day were surprised to see me at work. My head teacher said she was told I wouldn’t be in. I gave a contemptuous look and assured my head teacher that I would have phoned her myself, as well as the school, if I were not coming in. She replied that she thought so, and said she was confused by what people had said. I told her that it was likely the two teachers from the previous day, who saw me in pain at lunch hour, and who also know about my endometriosis. My head teacher asked me if that was acting up, and I said it was. I told her I was doing well at the moment, and that I hoped for the best, since I’d been pre-medicating for days.

The pain set in not long after class started, because as a preschool teacher I had to go right into the stooping and bending to interact with children. I consciously used the Alexander Technique as best I could the entire day. Between that, the muscle relaxers and Advil, I was able to get through the work day. That’s not to say it wasn’t a bad day; I bled through two pads, to my underwear, TWICE. Good thing I was wearing black slacks. The pain was at 6.5 on the pain scale for much of the day, though I had entered the workplace at about a 3 on the scale.
It took 2 half muscle relaxers and 1,200mg Advil gel caps to get through the day. The pain ramped further when I got home, despite taking a whole Tylenol 3, a half muscle relaxer, and 400mg Advil.
Before bed, I took another half Tylenol 3 and a whole muscle relaxer. I had intermittent cramps throughout the night.

That brings us up to Saturday - which was yesterday.
I conserved my energy, missing out on one of my husband’s birthday functions during the day. He was at a local game store playing table-top games with friends from 11am to 7pm, while I stayed at home playing it safe, trying to avoid the pain.
I took a continual amount of Advil gel caps throughout the day, and the pain level stayed at about a 4 on the pain scale.

I was able to accomplish some minor housework, which pleased me greatly.

Last night, I joined my husband for dinner at a local German restaurant. I have not had any alcohol in the New Year, because I knew the endo flare was on its way. For dinner, I chose grilled salmon on a bed of spinach.

I made all the right choices, and yet, the pain flared while I was out at dinner. One of our friends remarked that I was looking ‘green’.
I was in fact about a 7 on the pain scale. I broke the ‘no booze during an endo flare’ rule in order to attempt faster drug delivery to the blood stream. I drank some brandy with my Tylenol 3 and Soma. It really did help.
After dinner, my husband and I came back home, and I curled up in bed with the heating pads and passed out from the pain meds.

This morning, I awoke to debilitating pain from one end of my spine to the other, spread out across my back and throughout my pelvis. I was at 8.5 on the pain scale and whimpering a lot. I took a full Tylenol 3 and a full Soma, and the drugs took hold within 20 minutes. This thankfully lowered me back down to a 4 on the pain scale.
Moving around wasn’t really an option, as it brought the pain back up again.
As a result of having to take drugs first thing in the morning, I was barely functional, falling asleep at the keyboard from the drugs. My husband made me a bit of breakfast to eat, and then I passed back out again until afternoon.

I have spent the entire day in bed. I got out of bed long enough to make myself a late lunch, and this rekindled the pelvic pain, so back to bed I went, with my food, even.

This is not how I like to spend my weekends. I’m tired of doing this for 26 years. I’m tired of having spent thousands of dollars on two surgeries that have not made me pain-free. This is no way to live.

I really hope this endo flare is done by tomorrow, because I have to be back at work.

It is now 6pm, and I will get out of bed and move around. I’ve been getting out of bed every one to two hours to move around and test the waters on my body’s mobility and threshold.

…6:37pm: so far so good. I’m leaving the house to go grocery shopping with my husband!

…7:52pm: At the grocery store, my legs got weak and felt like giving out several times. I walked slowly and forced one foot in front of the other. Leg weakness is common with endo and me. The nerves radiating down from the pelvis must still be inflamed or impinged with the endo flare, because the signal does not reach correctly in the legs.
When we got home, I was helping put groceries away when I almost fainted. I literally felt myself go dark and dizzy, and then my eyes popped wide and I held onto the countertop. Now I have nausea. It’s not hypoglycemia - I ate 4 hours ago and I’m not feeling hungry. This is different from hypoglycemia. I know this feeling. It happens right before crushing pain from passing more clots. The rest of tonight should be interesting. I hope it all gets itself over with before work tomorrow!

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

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

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

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

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

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

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

This is AWESOME.

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

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

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

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

During my July uptime, I spent part of a day helping my husband with the technical side of his website, which felt good because it reassured me that even though I’ve been out of the computer industry for the past four years, I still know enough Linux to get around. My husband uses WordPress for his blog (like I do for this blog). Making the blog look exactly how you want it to involves a bit of waving dead chickens over the evil php files. I prefer to use ssh and edit the files in vi, because I’m awesome.

Anyway, the same day, we got a replacement bed, since our Keetsa mattress failed us. Thankfully it is under warranty. A bit of housecleaning and mattress wrangling was required, so chalk that into the “exercise” category for the day, heh…

I also was a bad monkey in July. Our friends, whom we crossed the country to see all married back in June, came out to visit those who could not be their on their wedding day. We were fortunate to hook up with our newlywed friends the day before they were to jet back home. We went to the tiki bar and I got blotto. Ah well. I love to tiki.
I did penance the next few days after that by bicycling to and from work.

Speaking of work, that was the week I was telling you about! I was a head teacher, even with a hangover! Wooo! I’m totally badass. I survived the week perfectly, despite two parent issues I thought might become nasty. Parents are crazy. I say this not having once ounce of parenting experience in my body. :p

I celebrated the end of the week of teaching by meeting with a tattoo artist. I hope to get a back piece by Winter Break. :D
I had wanted the tattoo by the time of my birthday, but I did not manage my money well … again.
This will be my first ever tattoo! I have body piercings, but I’ve always been too afraid to commit to a tat. The thing is, I’ve had the same idea in my head for a back piece since the early 1990s. I think it’s about time I finally committed.

So I had a good time during July uptime. I was free of endometriosis pain for three days before mittelschmerz, which lasted only a day. Then I was pain-free again for nine whole days before I got a jabby lower back pain, and then I was pain-free for another whole day before the slide to downtime began.

The uptime was a total of 13 days, of which nine were consecutively pain-free.

12:50pm:
A break in the debilitating pain overnight. Everything ceased, but for the throbbing low back pain. I was fine this morning, til a few minutes ago. This is the last attack - the ‘last gasp’ as my husband calls it - then I’m golden for a couple of weeks.

But right now, I’d rather be out of my body while this is happening. There’s a vice grip on my left ovary, and it’s twisting. The pain is causing moderate nausea.

1:49pm:
I just spent the past half hour doing an acupressure move as found in “Fibroid Tumors & Endometriosis Self Help Book” by Susan M. Lark. I added something to the position, though. I had tried it her way years ago, but in 2007 I found by adding a heating pad under the lower back while laying down increased the pain relief by a lot. So I did that again today when the pain had ramped up too quickly for me to get meds down.

 
Now I’m sitting straight up against the arm of the couch, cross-legged, with two heating pads behind me. I’m still waiting for all this to pass; there’s been very little blood with all this terrible pain. At least the drugs have kicked in for the dissociative part. Forgot to mention earlier - as soon as the pain hit, it immediately spiked, and I downed a whole Tylenol 3 and three Advil gel-caps. I swear, I shot it with some brandy, hoping it would help the drugs absorb into my bloodstream faster. Seems to have worked, though it’s speculation at this point. I got the idea from “The Oil-Protein Diet Cookbook”, by Johanna Budwig. In it, she mentions serving some champagne to the very ill person with their meal so that everything, including the patient’s meds, absorbs faster. Well I didn’t have any champagne, so I worked with what I had.

I graduated from the Montessori teacher training center on June 24! Yay!

 
That night, my husband and I hopped on a plane to Boston, Massachusetts to see a friend get married.

 
We hung out in Cambridge, Boston and Salem for five days. We literally walked until my feet bled. Granted, I didn’t have the best shoes with me for the trip (a pair of dress shoes and a pair of combat boots being the only choices).
We flew back home on the 28th, arriving late at night.

I was home for roughly 30 hours before having to board another plane, this time without my husband, to go visit my family.

As you can guess, the timing worked out well for both the wedding and the visit to family, as I was between pain cycles.

I flew in to Detroit, stayed the night at my Ma’s house, and drove with her down to Kentucky for a family reunion, in which she reconnected with a bunch of her first cousins for the first time in 8 years (the last time being at her mother’s funeral). She connected with even more family she’d not seen in something like 45 years.
It was like pulling teeth to get my hermit mother to commit, but once finally there, she really enjoyed herself.

 
We stayed in Kentucky for two days, then drove back up to Michigan, where I dropped off my Ma and bolted for a friend’s house to enjoy a reprieve between family visits. I stayed two nights with my best friend, Heather, and her family.

 
After some R&R, I headed up north to see my dad. It’s the same amount of time driving as I had spent going to Kentucky with my Ma. She’s nearly 5 hours from her cousin’s family farm, and my dad is about 5 hours from my best friend’s house. All told, during my week-long stay in Michigan and Kentucky, I did just over a day and a half worth of driving.

 
The trip was necessary but exhausting. My folks aren’t gettin’ any younger, as my dad likes to say, so it’s important that I try to see them every year. I really need to figure out though how to do this again next year without nearly killin’ myself with exhaustion.

I got back on July 7 and spent two days severely jet-lagged and barely coherent. On July 9, the pre-menstrual cramps kicked in. George arrived this morning. So even though I’ve now had two surgeries, I still only get about two weeks of uptime each month before the pain.

The good news is that the pre-menstrual pain hits a day beforehand, rather than up to a week beforehand. The great news is that instead of 7 to 11 non-consecutive pain-free days each month, this time around I had, if I marked the calendar correctly, nearly 17 consecutive pain-free days!

The bad news is that once george arrived, the pain kicked in immediately, which is a turn for the worse compared to the past four or five months, when the pain was hitting me around Day 3 of my cycle.

Maybe it’s just this month, cuz of all the stress and travel, not to mention coffee and alcohol drinking. I dunno. There’s a saying in Michigan - one that I probably used to use all the time but have forgotten about since I no longer live there. It’s a fatalistic life view, which is part of the reason I left Michigan. The saying goes, “It is what it is.” Basically, no sense in trying to understand or change something - it is what it is.

I think it might be easier on my sanity if I just say ‘It is what it is’ regarding my illness, rather than always trying to rationalise the pain - rather than trying to find a common denominator in all of it - rather than figuring it out at all.

Endometriosis is what it is. I can’t do anything to not be in pain. It’s not my fault. I was born this way. It is what it is.

But I’ve never been one to just roll over and be all fatalist. That’s a whole other discussion I could go on for days about.

Despite having cramps this morning, I did not want to chance taking my car to work, and I had forgotten again to see if there was a quick bus to my workplace…so I bicycled to work. This is the first time in 134 days that I have bicycled! It felt so good. Granted, I live only a mile from my job, but still, any exercise is good exercise. The weather has finally turned from constant winter rain to unseasonably warm and sunny; yesterday it got up to 83°F and today it got up to at least 86°F, so there was no excuse not to bike to work.

Speaking of exercise, I’ve been weight lifting again. Don’t get excited - they’re only 3lb weights. But as I said, any exercise is good exercise. I typically do the weights before bedtime, but I’m trying to get better at lifting when I wake up in the morning, too.

This month has been stressful for three reasons:

• I’ve been sick all month

• My father-in-law’s been in the hospital and just underwent a Transmetatarsal Amputation on Monday of this week
• A classmate who wanted to work with me on the thesis project for graduation has not done anything useful, and I have to fire her.
• Mercury turned Retrograde yesterday.

I detailed my getting sick in this post. I felt like I was getting worse, not better, on that day, but instead of starting in on a new pack of antibiotics, I decided to give it a few more days, since my doctor said the z-pack was supposed to have benefit for 5 days after the last pill. I just didn’t want to have to get a yeast infection. I have enough going on down there as it is with the endo.
I’m still coughing up junk, but not as much. I’m still needing what’s left of my inhaler once a day, usually in the morning. My ears are still clogged and the left ear is still painful, but not all day long anymore. So I guess I’m getting better…

Around about March 25, my arse started bleeding again. Same as it ever was, always a week before my period. It lasts a few days and happens during bowel movements, and then stops.

This week my symptoms were near-debilitating low back pain on Tuesday, and intermittent uterine cramping throughout the day on Wednesday and Thursday. Then last night I went to bed with the heating pad, woke with worsening cramps at 3:30am, took a half Tylenol 3, and went back to bed with the heating pad. This morning when I got up for work, I had moderate low back pain and the pelvic pain was about a 4 on the pain scale.
I kept forgetting to take ibuprofen all damned day, but after biking to work, I felt like I was more limber throughout the day. So that’s excellent.

Regarding my stress level…my father-in-law spent February in the hospital and then in physical therapy rehab after having his left toe amputated. Five years ago, he had his right toe amputated. He has mismanaged his diabetes for 20+ years, and is now shocked that he’s losing digits. When, two weeks after being discharged from rehab he was back in the hospital with another gangrene toe on the left foot, all hell broke loose (again) with his wife.
She told him he can’t come home until he can properly care for himself. Then she went on a previously planned vacation with her son and wasn’t back in time for her husband’s surgery. The surgery was a much agonised-over foot amputation.

His wife got back the day he had surgery, showed up at the hospital once he was out of the recovery room, and then fled in a hissy fit a couple of hours later. I’m the one to thank for that, because I got tired of her talking about him as though he wasn’t in the room with us, bitching about how he doesn’t take care of himself and it’s all his fault he’s back here again (not entirely true - he has a calcified artery in his leg, so no amount of dietary management or exercise was going to stop the toes from dying. She even told me earlier in the day that she was throwing out all of the “liquor”, even though he only has wine in the house. I tried to explain that his occasional glass of wine isn’t what set all this off but she wouldn’t have it.

Sure, yeah, it’s still his fault over time due to gross mismanagement of his illness, but he didn’t do it in the past two weeks as she keeps claiming). Anyway, I told her she and he need to work this out, it’s not for me and my husband to figure out for them. And apparently that’s talking down to her and I was told, “You can’t talk to me like that!” and she fled. Left her husband there, eyes welling with tears. Refused to answer her phone for roughly 15 hours. Wasn’t at the house when we drove by after hanging out in the hospital awhile longer.

I found out later that she’d had a previous marriage and that the guy was an alcoholic who literally drank himself to death. So it seems she’s having a giant triggering flashback that she can’t escape, and she’s projecting her previous marriage partner onto her current partner. Wow, serious mental issues, there. I’m told she refuses to do therapy. The way she freaked out when I said they need to work on their stuff kinda indicates her refusal towards therapy. I dunno. I don’t actually want to talk to her again for awhile.

The other stress I’ve had revolves around continuing homework and internship responsibilities, and the classmate who wanted to work with me on the thesis but who has barely done anything at all towards it. I’m going to see what she produces for the seminar next weekend and then fire her if she doesn’t have enough to show for. Ugh. Hate it. But she can’t take the credit for all my work. I won’t let her.

In the food and drink department, preceding this menstrual cycle, I have imbibed on wine, port and nigori to the point of drunkenness, but not anywhere near the point of making an ass out of myself. I have gorged on chocolate and cheetos - staging a rebellion I guess - I have no excuse. I know these things hurt me and I did it, anyway. I wanted comfort food to deal with everything.

Regarding the astrology thing with Mercury going retrograde - I’ve been feeling the effects of that for the past two weeks. Ugh. It becomes harder for me to control my mouth. It becomes impossible for me not to drink or spend money or in general do unwise things to my body and mind. Most people find astrology to be hogwash. That’s fine, we’re all entitled to our quirks. If you don’t like my quirk, I don’t need to hear about it. Plus, I’m PMSing. Telling me how illogical astrology is will just get you thrown into a pit of rabid weasels.
I’m probably PMSing so badly because of all the junk I’ve been putting into my body. But it’s too late, now. I just have to go through this month and hope all the damage I did isn’t long-lasting in my body tissue.

The PMS is pretty harsh. I’m extremely moody and my body temp is all over the place, but mostly I’m freezing. I just spent a day in hot weather, came home, stripped down to my underwear, and within an hour I was freezing and now I’m still freezing, even though the house is 70°F inside (it’s down to 73°F outside). I’m literally wrapped in a velour blanket. Oh and the cramps are back again, now that I’m cold. Awesome. Good thing I just ordered some leafy green saag from the local Indian restaurant. Oh yeah, spending money again. *sigh*
George will be here officially in a minute - the mucosa changed colour this afternoon.

Lastly, I don’t think I’ve experienced mittelschmerz this month. I know I said the same thing in January and went back on it, and then in February it was difficult to tell for sure because it could have either been dyspareunia or mittelschmerz, or both. This month, I was just too stressed out to remember to record whether I was having mid-cycle pain.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Yeah. I still get Mittelschmerz. :(

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

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

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

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

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

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

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

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

Meh.

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

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

Back and forth. UGH.

When the class ended, I bolted.

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

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

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

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

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

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

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

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

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

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

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

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