I Will Not Suffer In Silence

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.

Edit: It is amazing to look back on now, but six months after posting this photo, 14 out of 16 people in that photo abandoned me in the wake of my husband’s affair with a woman I babysat for. The abandonment circle was much wider than that photo, though. I lost near a hundred people who thought it no big deal for marriage vows to be violated. Several of those people actively hid their knowledge of the affair from me for months. Photo preserved to remind me of snakes and liars. Women with endometriosis are often cheated on. There’s no excuse for it. EVER.

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

There was a lot of food.

 
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. :)

Irish Monkey Cellars

Look at all that port! At Westover 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!

A New Year is supposed to be a time of New Beginnings, New and Wonderful Things.

Instead, the year starts off with a horrible diagnosis, hate-filled and self-serving drama, more clashes between “protesters” and police, and well, the same old same old as far as my endo pain.

The horrible diagnosis is Stage II squamous cell carcinoma for my father. The news was received on January 4th. I spent 48 hours trying to get as detailed information as I could, but it was all couched in panic and high dramatic emotion from my father and step-mother. I keep being told “it’s melanoma, but the doctors say it’s not.” Well, squamous cell carcinoma is by definition non-melanoma skin cancer. It’s dangerous if left untreated, and the doctor did tell my dad that if he’d gone for a few more months, it could have been fatal. My dad and his wife are acting like it IS fatal.

It’s been hell on all of us, emotionally, to get dad to calm the hell down and take charge of his emotions and get some courage up for the treatment ahead of him. He’s chosen to take an experimental chemo treatment called Efudex for two weeks, and then he will have a Mohs surgery on February 27 to excise the cancer, which is on his temple. He’s already had upwards of 16 other cancerous lesions excised and frozen off the surface of his back, chest and hands. Now what remains is the one on his temple. He fought for over a year to get treatment, but his small-town doctor did not take the lesions seriously, and kept telling him it was psoriasis.

The hate-filled and self-serving drama relates to endometriosis support groups on the Internet. There have always been a number of splinter groups forming once a new group springs up. There have always been nasty women saying nasty things about other women, going so far as to blame women as being attention seekers and drug addicts. YEAH, JUST WHAT I WANT IN A SUPPORT GROUP. GO HUMANITY! WOOO!!! This is nothing new – it’s been going on since before I even discovered online support groups in 2007, after my first surgery.

There’s (again) been a rash of women who opened up and admitted to being suicidal, ever since an endo sister did try to end her life in December, and gained the top headlines so to speak in some endo forums as a result. The nasties lashed out, saying the others who were suicidal were just attention whores. Can you believe that?!?! OMG. Here you are, finally able to say, YES, ME TOO, I’VE BEEN IN A DARK PLACE, PLEASE HELP ME, and what you get in return is being called a drama queen attention-seeker.

Then there are those who are actually bitter about not getting replies to their posts or questions in the forums in a timely fashion, who instead of re-posting the questions until they do get an answer, simply go around bad-mouthing the group for not paying attention to them. GROW THE HELL UP, PEOPLE. There are hundreds of people on some support groups, and thousands of people on other support groups. If you post something and nobody replies to it, think of the following:

• What time of day is it – maximize your posting for a time frame in which most people will likely be on the computer. Keep a world time zone chart handy!
• Either bump or post your question or story a second time if you have gotten no feedback the first time.
• Write to an admin on the support group to elicit further help to getting your story or question some air time.

It’s not rocket science. People need to stop being so selfish and childish. The support groups are made up of people who suffer from the same illness – not of 24/7 on-call doctors and psychologists FFS. We are there to support each other, but we are all in pain, we are all enduring family stuff, we are all trying to get work done in some fashion, and then we come to the support groups online to help ourselves and others like us. The ones who are being abusive need to be expelled.
It’s a good thing I’m not an admin, and I have been asked plenty of times to help admin different lists over the years. I’d have kicked off hundreds of people by now, I swear. I have gone through many online support groups; they start out well enough but almost always devolve into a damned Lord Of The Flies novella. It’s sickening. You could be reading this rant in the year 2000 or in the year 2027 and the same frustration will still be there. Humanity often remains so very disappointing to me.

The clashes between “protesters” and police reference is regarding the continuation of the “Occupy Wall Street” movement, specifically the branch of it that is going on near where I live. Here we are, three months later, aggressive protests and police brutality still happening, and still no direct words from the President of the United States. He was mic-checked in November in New Hampshire, but again, spent but a sound byte of time on the entire movement:

The Governor of the State of California finally broke his silence on the occupy movement on December 27, when he said he will do everything in his power, just shy of bringing in the National Guard, to keep the Port of Oakland open, should the protesters try to shut it down a third time.

Governor Brown also said, “I think the Occupy movement is focused on city halls and universities and maybe other institutions…It’s an expression of disapproval and discontent, but it’s not incorporated into the political process at this point, at least not the political process where you vote Yes or No on an initiative.”

The same old same old as far as my endo pain is just that. I’ll write up a separate journal entry, as this entry was mainly to blow off steam.

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.