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

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:

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.

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!

Holy Moly, how did we roll into another year already?!?

Rather than chronicling all the bad stuff, let’s catch you up on some good things:

My uptime (no endo pain) began on December 14, and continued for 15 days!
December 22 was the last day of work for the winter break, and I got to spend good quality time with my husband and our local friends. I don’t normally celebrate winter holidays with family, because I live clear across the country from them, but I did get to talk to my family by phone. I even got to attend a party with my Michigan friends via Skype!

 
Giftmas, as I call it, was happily low-key. I am quite loved by my students and workplace, as there were a great many gift cards, hand-made gifts, and other wonders! From the gift cards, I received a bounty of new books to read. My husband got me a digital EMF detector, because I like to ghost-hunt, and because I’m also sensitive to EMF, so reducing it or avoiding it early and often is key for my well-being!

We spent Dec. 25 at a friend’s house; they are like family, so it is a relaxing, cozy environment. We went dancing on Dec. 26, and for New Year’s Eve, we went to two local bars to celebrate with friends and acquaintances.

 
My husband and I also watched a lot of Rome – an HBO miniseries. Our friend loaned it to us on DVD and we’ve been enjoying the hell out of it. I’m a bit of a history nerd, so we’ve been watching the series with the historical captions function activated. :)

During the endo uptime…actually from day 1 of the endo uptime…the discs in my neck pinched a nerve, and I have been dealing with that since December 14. It was the second time in a month that the discs pinched on a nerve in my neck; the same happened back on November 20, but the pain only lasted 3 days before righting itself. The pain this time was so bad for so long, that I missed 3 days of work. I spent all of winter break moderately to heavily medicated on muscle relaxers, Tylenol 3 and Advil. The doctor wants to do cortisone injections, which I put on hold until I got the results back from allergy patch tests to see if I have a sensitivity to cortisoids (I don’t, according to the patch test). My Ma had a really bad experience with cortisone treatment, and she and I are both highly allergic to penicillin. Because I share similar allergies to hers, I wanted to be tested before undergoing further treatment.

The joke during this time was that although I had pain, it was nothing compared to the endo pain!!

Excerpt from Facebook:
Definition of stubborn: driving self to doctor & errands on Tylenol 3 & Soma (pinched nerve is worse after trying new neck pillow). HEY, this is nothing compared to endometriosis pain! lulz
-December 30, 2011 at 1:05pm

I’d love to have muscle relaxers for each endo flare, too, but A) they’re addictive and B) they make me fat and depressed, so I usually steer clear of muscle relaxers unless the discs act up.

Of course, now that I’m cleared for cortisone injections, my neck decided to ease up! It was the longest period of time that I can recall pinched nerve activity. It was pretty brutal.

On Dec. 26 and Dec. 31, I wore eyeliner when I went out with friends, but for some reason, my eye hated the same eyeliner on NYE. Two days later – that’s today – I developed pink eye. It’s the SIXTH TIME since October 3, 2011 that I’ve had pink eye, all of which started around the time I began using Maybelline Great Lash mascara. I got a chemical and environmental allergy panel done at the end of December, and it did come back as suspect for sensitivity/allergy to cosmetics ingredients. I say suspect, because one doctor said YES it’s positive, and one doctor and one nurse said NO, it’s inconclusive. Damned doctors. No, of course there was no blood test – only skin patch test.

 
So although I’ve been sick with one thing or another throughout December, I am still happy to report 16 days of consecutive uptime between menstrual cycles. There is positivity in there, I swear!

I also went to the dispensary during winter break, which has become famous overnight, as it’s now part of a television series called Weed Wars. I re-signed up for acupuncture, reiki, chiropractic, yoga and the alexander technique. Most of these services are now experiencing a 3 month wait due to recent fame for the dispensary, and of course it’s wall-to-wall people at all hours, now. I’m really happy for the dispensary, and also feeling a bit selfish for wanting services sooner. ;)

I will finish my New Year’s entry with a list of goals for 2012:

• Go sugar-free again.
• Do a better job from abstaining from alcohol again (I know, that few-times-a-week glass of wine is awesome tasting and relaxing, but may not be doing your cramps any good!)
• Be serious about gluten-free baking at home, so I cut down on processed foods.
• Start biking to work every day again.
• Start posting more positive entries – what I can do, as opposed to what my limitations are. It doesn’t have to be one or the other, but just not all negative chronicling all the time.
• See if I can manifest the idea I had recently to gift fellow endo sisters, to share positivity and love.

(Reposted from Facebook)

 
December 10, 2011 at 8:11pm via mobile
Spent the day drugged to the gills on Tylenol 3, but at a friend’s house playing my first ever Call of Cthulhu game. Bonus – one of the gamers is an acupuncturist who did some work on me during game!
It’s pretty awesome when your friends allow you to play the game while doing various pain management stretches and maneuvers. The lady of the house even had a heating pad for me! ♥

 
December 11, 2011 at 12:36pm
Yesterday after gaming with friends, my husband drove me to my tattoo consultation. Still drugged with pain meds, I walked baby steps from the car to the tattoo parlour. The tattoo artist and I discussed the piece and made some changes, and then I bought a pair of wooden earrings. I’ve been wanting to change out all my jewelry from metal and plastic to natural wood and stone jewelry. One of the women at the shop misjudged my earring size, and I ended up with a stretch nearly a gauge in size. I was about 6ga – she took me to 4ga when she put the wooden earrings in. However, the resulting endorphin rush had a positive effect on my endometriosis pain…as in it nullified it for a couple of hours!

YAY!!! I was even able to walk up a San Francisco hill to get back to the car. Holy crap, you have no idea how cool that was. I should do endorphin pain management as endo treatment every month.

 
December 11, 2011 at 3:57pm
(Attempting to keep some positive thought up)…

Something that I have done which you may not have:

I have ridden on a donkey in a Bedouin village near Netanya, Israel.

Last night, I developed uterine cramps after eating pasta alfredo with Langostina tails for dinner.
I also had a cup of caffeinated tea with dinner. The pain started on the way to a concert, and got worse throughout the night. Standing or sitting did not matter, the nerve pain stung and radiated from the uterus, settling in the lower back, causing debilitating pain by the time I left the Peter Murphy concert. I descended the stairs of the concert venue slowly, wincing with each step, clutching the railing.

By the time I got to the bottom of the stairs and was out on the street after the concert, I was nauseated from the pain. On the way home, every time the gravity changed in the car (turns, changing lanes, curving highway), the inflamed nerves screamed, and I cried out in pain.

However, once I got home, I refused to take meds, because I wondered if it was my kidneys acting up. Other organs are easily afflicted by endometriosis, and if the kidneys were suffering, then adding pain meds might make things even harder on me to process. Instead, I used an exterior pain relief gel, and did some Chi Nei Tsang around my pelvic cradle to see where the pain was coming from, and how it was radiating out.

Though the stinging, burning nerve pain felt like it was in the sides of my pelvic bones, in my lower spine and radiating down my legs, the Chi Nei Tsang helped me realise that the originating source of the pain was actually in the uterus. It was so inflamed that the nerves broadcasted a pain party to the entire pelvic cradle. It grabbed hold of the trunk of nerves in the pelvic cradle and shot down the sides of my legs, almost to my knees.

The pain relief gel comes from NationalAllergy.com, and it is called Super Blue. I rubbed that on my lower back, and then situated a heating pad over my pelvis.
Further, I moved my body slowly to figure out the best position for rest. It was one of those times where I wished I had my old futon mattress again, because our bed was far too soft given the level of pain I was in.

Last weekend, I had developed pelvic pain on three occasions right after drinking coffee, so I have since gone back to drinking caffeinated tea, and only in moderation; one cup at a time, and not every day. I had not recently developed pelvic pain with the tea, so I’m suspecting the langostino shellfish as the culprit to my pain. Shellfish is said to contain lots of dioxins, which feeds endometriosis growth and flaring, though there has not been any in-depth studies that I know of to show you to prove this. It’s just one of those things that I know to be a solid suspect, based upon my pain history when consuming shellfish, especially at or near my cycle.

This morning, I am running late for work, and the stinging pain resumed once I crawled out of bed. I will be taking 800mg of Advil gelcaps to get through the day. I am two to three days away from the onset of my next cycle; george will be here by Wednesday or Thursday, in time to ruin weekend plans. However, I have a consultation with a tattoo artist about a design I want on my upper back, so I plan to be there, drugged to the gills or not.

I enjoyed a mere four pain-free days before pelvic pain returned. I don’t know if this was early mittelschmerz or what, but on September 9 and 10, I endured intermittent stinging and stabbing in the uterus all day long.

Then, on September 11, I had to contend with dyspareunia all day. I had intense low back pain with stabbing uterine and cervical pain all day after intimacy.

For two days after being intimate with my husband, I had right side stabbing ovarian pain all day. It made me cry out “OW!” or yelp in pain each time. Around 4pm on September 12, there was continuous pulsing pain for several minutes, and on September 13 I had intermittent stabbing ovarian pain all day again. Despite this, I bicycled to and from work on September 12 and 14.

I was able to enjoy three more pain-free days from September 14 to September 16.

On September 17 (my birthday), dyspareunia ruined all the fun again, and lasted for two days.

I then had three pain-free days before the pre-menstrual pain cycle set in on September 22. To make things worse, I contracted an intestinal virus, which caused mean stomach pain on September 23, leading to diarrhea, which lasted for two days. I felt like I could die. My entire body ached and my mood was more foul than my worst PMS.

Speaking of PMS…stomach flu aside, I have to say that this month’s PMS was the most aggressive and depressing since I was on synthetic hormones. The level of rage I had in the past two weeks equals that which I experienced when I was on Yasmin back in 2007. I phoned my mother to ask when she started menopause, and she thinks it was right around the time we moved houses back in 1983, which would put her at 39 years of age. She gave several instances of being a raging psycho hose beast from hell (which my diaries corroborate).

Well here I am at age 40…so I wonder if I’m starting down the path to menopause. Half of me shouts HOORAY! because the hope is that with menopause, the endometriosis will burn out.
The other half of me is freaking the eff out for two reasons: #1 I still look, act and feel like I’m in my late 20s, and #2 all the other crap that goes with menopause is terrifying to ponder.

Going back to the whole pelvic pain thing…
On September 25, I attended the annual Alameda Home Tour, despite getting over the stomach flu and enduring more pre-menstrual cramps. I was on Tylenol 3 and Ibuprofen all day, but not to the point of stupor – I took half pills of Tylenol 3.

To cap off the day on September 25, I developed a migraine.

I have started tracking the migraines. I also had a migraine back on September 7, and I complained on facebook that I felt like I was having an increase in migraines each month ever since my surgery last December. My friend Wanda is the one who told me it could be tied to my cycle, and to start tracking it, so I went back as far as I could online and in my iCal to see if there was a connection.

Well wouldn’t you know it, there IS, and it goes back YEARS:

September 7, 2011 – Migraine lasting several hours (two days after period ended. Also, it was 86F outside and I was at work in the heat for a couple of hours, then bicycled home).

April 27, 2011 – mild to moderate cramps, migraine from hell, lasting 5 hrs (on first day of period)

January 19, 2011 – light to moderate pelvic pain two days after my period started, “with migraine that lasted five hours, then major pelvic pain and bleeding with cramps at 11pm.”

October 12, 2010 – Migraine noted in facebook (1 day after period ended)

January 29, 2010 – Migraine lasting for several hours on same day spotting started.

January 8, 2010 – Migraine noted in facebook (During period)

December 26, 2009 – Migraine noted in facebook (during Mittelschmerz)

July 9, 2009 – pounding headache two days before period.

April 6, 2009 – moderate headache on 4th day of period.

January 26, 2009 – Migraine noted in facebook (3 days after george ended)

In all, during my supposed uptime, I enjoyed TEN total pain-free days, which were non consecutive. This is dismal compared to the last few months.

September 1: Day two of george. Took half a Tylenol 3 by 10:30am while at work because the pain kept ramping up. Came home from work after only three-and-a-half hours there, took a full Tylenol 3 and went to bed. Slept for five hours, completely missing my appointment with my shrink. I was bedridden from 2:30pm – 7:30pm, and couch-ridden for the rest of the night. Called everyone I needed to for work to let them know I probably would not be in the next day.

September 2: Tried to go to work, despite the pain, because I’m afraid of being fired (the PTSD from the company who fired me in 2007 for missing work due to the pain still wells up every month). I took 600mg of Ibuprofen before work in an effort to stave off the pain.

I came home after one hour.

I took half a Tylenol 3 when I got home, took another 600mg of ibuprofen at 12:30pm, and also took another half Tylenol 3 at 12:30pm. I cannot remember how much more Tylenol 3 I had that day.

We had a standing invite with our friends that night, so I tried it out. They live up one flight of stairs now, instead of three, but any stairs are a nightmare for a person suffering from chronic pain. I slowly climbed the stairs, holding onto the railing like one who is holding a rope to climb a rock. The thing is, one of our two friends who lives there also suffers from chronic pelvic pain (fibroids) and back injuries, so having one flight instead of three flights of stairs to climb is a definite improvement for her.
While visiting, I was able to sit in a chair and chat with our friends. We did not play card games or board games that night, which was for the best, because minimal movement was best for me. Sitting upright in a chair or reaching back and forth across a table for a table top game would not have worked out for me. I was on Tylenol 3 and Ibuprofen while at our friends’ house, but again I cannot remember how much I took in total that day.

September 3: Saturday. The cramps were very heavy that day, but the bleeding was subsiding. This was the day of the annual Scottish Highland Games. Again being stubborn, I did not want to miss this event, so my husband and I agreed to bring the wheelchair along. I was in minimal pain, but I still popped 400mg Ibuprofen and a half a Tylenol 3 just to make sure I was ahead of the pain game. I was coherent all the way to the fairgrounds. My husband got the wheelchair out of the trunk and I pushed it. I walked slower than my normal pace so as not to stir the hornet’s nest of pain, but by the time we made it from the car to the front gate, the pain had returned.

I ended up taking a total of 2 Tylenol 3 that day, and 1,200mg of Ibuprofen if I recall correctly. I alternated between pushing my wheelchair and being pushed in it, but I was so drugged that I walked in a stupor. I felt like a mental patient whenever I was pushing the wheelchair. I felt the usual embarrassment with having to rely upon the wheelchair, but I did not let it consume me.

My dashing husband

Already exhausted from the pain, but ready to see the games

Caber toss

Caber toss

Weight For Height competition

Weight For Height - ball

Wheelchair bound

Standing upright - towards the end of the day

Glad I had my spare spoon with me!

 
September 4: Sunday. Again, we had plans to be somewhere, and I refused to let the pain stop me from living my life. I was experiencing moderate to severe low back pain, and intermittent pelvic pain, but I gave the thumbs up to attend the monthly Alameda Antiques Fair. I was in search of a dress and accoutrements for my upcoming birthday party, which was to be a 1930s costume theme.

I was on Tylenol 3 and Ibuprofen all day. I cannot remember how much I took. I had my wheelchair in trunk of my husband’s car, but I did not use it. However, I did want it at times, but I wasn’t as bad off as I was the previous day, pain-wise. I rested often and walked slow. Bleeding had slowed, and I spotted all day.

Giant flea market on Alameda Naval Base (photo from web)

 
September 5: Monday. Labor Day – I was off work. I was feeling much better, and my energy was up, but so was my anxiety for some reason. I was near panic attack all day.

The next day, I was back to work. It was my uptime, at last!