I Will Not Suffer In Silence

(reposted from facebook)

Yesterday was really rough for me emotionally. I hadn’t even fully emerged from several days of endometriosis pain when my upper back/neck went out. This is the second time in a month that a pinched nerve issue has cropped up - it used to happen all the time when I worked at a desk, but since changing careers, the pinched nerve issue is rare. This is a really bad one, and is still on fire today, despite pounding myself with muscle relaxers and Advil all afternoon/night. I’m tired of being in pain. You have no idea how tired.
December 15, 2011 at 6:59am

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Think about it for a moment.

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

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

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

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

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

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

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

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

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

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

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.

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!

On Sunday, July 31, I was driving with my husband when suddenly my lower back screamed in agony, leading me to cry out in a high-pitched wail mid-sentence. The stabbing pain lasted less than 30 seconds and was gone without a trace. What the hell!?

The very next day, PMS set in just over a week before I was due, in the form of Cleaning All The Things™Allie Brosh. The day after that, I got left side ovarian stabby pains, which lasted for two straight days. I ate a lot of Ibuprofen.
At this point, I knew the party uptime was over. I actually became quite depressed about this.

Befuddled by my depression, knowing I have dealt with this illness for almost 26 years now, I wrote the following:

Dear Steph:
You must acknowledge that you have entered Downtime. You are not lazy, you are not slacking - it is just time to go. You cannot fight this. You are Persephone. Just go to the Underworld quietly and do your time, as you have done for two and a half decades. You will emerge again - you always do. Stop thinking diet or depression or laziness might be bringing on the pain. It’s none of that. Just go under and do your time. Look out the window or go outside and enjoy the sunlight for one more day, but mark my words, by the end of today, you will either go of your own power or I will take you forcibly. Stop whining - you’ll be back by Monday. Sheesh. Be thankful that it’s only a cumulative of 3 months out of every year you spend in the Underworld. It could be consecutive. You don’t want that, do you?
-Hades

Still getting left side stabby ovarian pain, and having struggled through a hypoglycemic morning, I got my ass up off the couch and said, “FINE! I will go and enjoy the sunlight for one more day, you bastard!”
Well, I said a lot more cuss words than that, but you get the point.

I put on some sweats, a tee shirt, bicycle arm warmers, knee braces, bike helmet and off I went for a bicycle ride while my laundry was washing.

Here's me telling endo what it can do with itself.

Foeniculum vulgare (fennel), a pretty but invasive plant on our shoreline, along with Spartina alterniflora x foliosa (smooth cord grass), another horrible invasive, in the background.

My highest speed that day was actually 17 M.P.H. -pretty good for one on the verge of an endo flare.

After two days of stabbing pain, I then spent the next four days dealing with hypoglycemic attacks while my body went down the drain hormonally.
Despite all that, I still managed to exercise every day that week leading up to menses. I weight-lifted, I did aerobics, I bicycled, I cleaned house like a rabid meth fiend. After the bicycling, I got nauseous and weak in the way that only I know means it was pre-menstrually-related.

On Friday, August 5, the vaginal mucosa turned pink, and I knew the do0m was upon me.

So naturally I went dancing.

I wanted to go out to a club, but I could not predict how rapidly my body might go downhill, and besides, I’m flat broke financially after the traveling I did this summer, so I stayed in and held Club Steph:

Club Steph: A Gothic Nightclub Of One, held irregularly.

In short, I went to the underworld to do my downtime kicking and screaming, like I always do. After dancing, the nausea set back in. Nausea has been big during this menstrual cycle, making me think I have another ovarian cyst.

Regarding the kicking and screaming…before my second surgery even happened, I had regressed to a crying, sputtering three-year-old, throwing a fit every time I was about to go into downtime again. After 25 years, I’d just had enough of it. I was no longer stoic, I was no longer accepting of my fate, or even willing to work with what uptime I had each month.

I had a lot of hope that the second surgery would give me more uptime, and you know what, IT DID, but not enough so that an employer would notice. This is what keeps my stress level up - the fact that I know there was some benefit to both surgeries to my quality of life, but yet it didn’t make enough of a difference to employers. I had to call in sick today, and I wonder if I’ll be well enough to go in tomorrow. This of course makes my employer unhappy. She has stated to my face that she is concerned about putting me in a head teaching position because of my illness. Because she has not denied me of the position yet, I cannot take action. Because all of her discriminatory remarks as regards my illness have been verbal, I don’t have much solid proof of things to take action with, and so I am in a constant state of mental anguish and a feeling of gross job insecurity.

In order to feel a bit more justified and dignified, I went back through the past five years’ worth of data on my menstrual cycles. It looks like it wasn’t until December, 2008 that I caught on to the idea of trying to pinpoint when mittelschmerz was happening.
Though I had caught on to the idea of tracking my uptime between cycles in November, 2007, it remained an abstraction. It wasn’t actually until August, 2010 that I actively employed this tactic on my calendar.

We already know that my first surgery in 2007 barely helped me in the grand scheme of things. Sadly, I did not have the tracking discipline that I now have going on, and I use the term ‘discipline’ loosely.
All I remember from the 2007 surgery is that it felt like I gained a week of uptime back in my life each month. This means that instead of getting pain and other symptoms two weeks before menstruating, I was, after surgery, only experiencing pain a week to a few days before menstruating. This meant that my uptime between cycles had lengthened.
Once menses hit, however, I was still bedridden every month and missing work. That part hadn’t changed a bit.

I wanted to find out if my second surgery fared better, so I have spent the last two days going through my calendar and my blog posts to gather data. Again, record-keeping was crappy in 2008 and pretty much non-existent in 2007 going by calendar alone, so I just focused on the past two-and-a-half years’ worth of data.

You can see immediately that surgery provided benefit where job loss and uptime is concerned. The fact that I’m still missing one day of work per cycle is still troubling to my employer of course, but dammit, I’ll take what I can get. Check it out:

It’s not much, but it’s what I have to work with. And I did all this data compiling while stoned out of my head on Tylenol 3. Too bad I am completely useless in my current line of work when I’m on the Tylenol 3. Maybe I should just go back to tech work and find a job working from home full time.

One last thing that is very important to note for my morale:

I had my second surgery in December, 2010. Upon recovery, I was not bedridden from endometriosis in February, March, April, May or June. I was couch-ridden from the pain in July and August, but there has been moderate nausea with these last two cycles, and as I keep saying, I think there’s an ovarian cyst going on, on top of the endometriosis. But I have not spent 12+ hour days in bed in my pajamas with the heating pads on me at all hours of the day and night like I used to before surgery. This is a vast improvement over the first surgery I had in 2007.

There is still hope that my condition will improve. I just need to get back on track with the dietary restrictions. I lapsed from May onwards due to graduation, travel to see family, and general summertime fun. I need to cut sugar and alcohol again. It will be difficult. I will cry again. I will wail and gnash teeth over it like I did last time, but I’m doing this to further the benefit of surgery.

8:22am
I might just puke from the pain. I’m about 8 on the pain scale right now.

I’ve been on Tylenol 3 for bad cramps since Day 1 of the cycle this time around. Were I scheduled to work, I’d have missed two days of work already.

12:36pm update: I just now popped 600mg Ibuprofen. I was too nauseous earlier to ingest medication. Twice during this menstrual cycle, I have had diarrhea, which is uncommon for me. The pain of even having a movement made me nearly puke as well. I sat on the couch for a couple of hours with a heating pad on my front and on my back. I lay in fetal position and napped, exhausted from the pain, even though I’d just slept 8.5 hours overnight.

Now the pain is about a 6.5 on the pain scale.

I am going to see what kind of homework I can get done. Yes, I graduated school but I still have homework to turn in. I didn’t actually get my teaching certificate on the day of graduation, but at least I did get to attend graduation.

1:17pm update: I just took half a Tylenol 3 because the pain is ramping up again.

I did go to work that next day on March 10, and I worked nearly the whole day before the pain decided to come back and bitch-slap me one last time. I left an hour early. So this month, I’ve only missed one day and one hour of work total on account of george, and once again I was never fully bedridden during this cycle. That’s two months in a row now!

This is really great post-op news!

Next period is April 1st (ha-ha). We’ll see how it goes. I remain hopeful.

The main complaint for this month is attack of the killer viruses.

February 28th I came down with the flu, and that was on a Monday. I went to the doctor, who listened to my lungs and remarked that he heard “crackles.” He listened again but I had a coughing fit, and that seemed to clear things up. I joked that he’d have to wait for the next build-up before determining “crackles” again.

The doctor asked if I’d had my flu shot. I said no, because I’m allergic to eggs (flu shots are created using chicken eggs, did you know?). He then suggested I try Tamiflu. I told him I have previously examined the drug and its side-effects, and decided that my sensitivity to meds, coupled with dealing with autoimmune disease, did not make it appealing to chance multiple side effects on the off chance that the flu might be lessened by one or two days.
The doctor asked what autoimmune disease I have, so I told him I have endometriosis. He looked annoyed, put down his pen, looked at me and said, “Endometriosis is not an autoimmune disease.”

My jaw dropped. I politely told him that the confirmation on this is fairly recent, so yeah, it’s actually an autoimmune disease. Meanwhile, his intern student doctor, standing to my left, murmured under his breath, “yes, it is an autoimmune disease.”

The doctor retorted angrily at me, “It is NOT an autoimmune disease!”

I thought for sure his next comments would be something about endometriosis MERELY being painful period, and why don’t I try some Midol to ease the cramps…he was at that level of condescension.

I told him “First of all, I’m the one with the disease, so I’ve done my homework, so yes, it IS an autoimmune disease, and secondly, there has been proven anomaly on chromosomes 1 & 7, WOULD YOU LIKE COPIES OF THE STUDIES, since I am subscribed to medical journals?”

The intern again quietly agreed, “it is an autoimmune disease.”

The head doctor wanted to hear none of it. Red-faced with rage, I informed him that I’d be inserting the studies into my medical file for his education.

THIS IS THE TWENTY-FIRST CENTURY, AND YOU ARE IN A SUPPOSEDLY DEVELOPED NATION, IN A SUPPOSEDLY HIGH-TECH DOCTOR’S OFFICE, TELLING ME WITH YOUR IGNORANCE THAT YOU ARE NOT UP ON THE LATEST MEDICAL RESEARCH?!?!?!?!

This is the second doctor’s office I have chosen in this city. I see I may have to fire this office, too. Sadly, I’m certain that all local doctor’s offices are this stupid. When I was leaving the exam room, the intern held the door for me. I smiled and quietly thanked him for backing me up. He grinned and replied that he was looking forward to the heated debate on the topic. It seemed like he was trying to tell me that he’d be in trouble for agreeing with the patient, and that it wasn’t his first run-in with the doctor. Ugh, poor intern. I sincerely hope he makes it out of med school in one piece.

When I got home from the doctor’s appointment, I called the office and told them to put it in my file that I will never see Dr. James E. Eichel again. As a matter of fact, my husband reminded me that the reason he left that doctor’s office the first time around in search of another family practice was because of Dr. Eichel’s condescending attitude.
I did a background check on him, nothing comes up. But take it from me and my husband, the guy’s a total asshole. Also, check out doctor reviews on the web - numerous people have found him to be condescending and rude.

I was so angered by this doctor telling me that my debilitating chronic illness is not in as valid a category as he feels it should be, that it has taken me 24 DAYS to write about it, and even now, this is the best verbiage I can find without using a string of expletives and then throwing something across the room.

So that was Monday, February 28. I took the whole week off of work to get better. However, by that Friday, the flu had turned into bronchitis. I was back in the doctor’s office, and again a doctor listened to my chest. By now I was seriously wheezing, too. The doctor said she heard “crackles”. Hm, this is the second time in a week that word was used, so I asked what it meant to detect “crackles.” She said it means pneumonia at worst. I asked if Dr. Eichel had put it down in my chart that he’d heard crackles back on Monday.

GUESS WHAT.

He made no mention whatsoever!

ASSHOOOLLLLLLLLLLLE!

So I was sent to the hospital for a chest x-ray. Thankfully, it came back normal. However, I was diagnosed with bronchitis and put on an inhaler.

The following Monday is when I got my period. I went to work that week, and only missed one day of work, and took it as easily as I could given the bronchitis and menstruation. I hacked a lung every day, and alarmed the students some of the time with my coughing fits. Being outside for a couple of hours each day didn’t help either, what with the cold, wet weather we’re having.

Ten days later, just as the bronchitis was clearing, I felt well enough to go dancing. We got home late, and I got about three hours of sleep, got up and went to work.

By the end of the day, I had a sinus infection. Go me. :(
Three days later, I had an ear infection.

Friday, March 18 I was back in the doctor’s office. The doctor, thankfully my preferred doctor this time (April Fredian), walked into the exam room, took one look at me, and sighed, “you got it, didn’t you.” She told me that this flu-turned-bronchitis-turned-sinus-infection is a really nasty thing she’s seeing in a third of her patients, and even she did not escape it. She estimated that I will be sick for another month and a half.
Dr. Fredian examined my lungs (clear) and my ears (left eardrum inflamed, could rupture), and my nose (more allergenic than viral). I was told all I could really do was take anti-inflammatory meds and hope my eardrum didn’t burst. She gave me codeine cough syrup and suggested I try Afrin for the allergy-ridden nose. I asked if antibiotics would help with the ear infection - she said if by Sunday my ear still hurt a lot, to get on antibiotics. I asked what kind, cuz I still had a z-pack at home. She said the z-pack would do, and then amended her prescription, saying if my ear still hurt by Saturday, that I had her permission to take the antibiotics.

So on Saturday, the ear still hurt, and I started the antibiotics.

Today was Day 5 of the z-pack - the last day - and dammit if the sinus infection and ear inflammation didn’t get worse. WTF.

So I’ll be back in the doctor’s office again tomorrow for further advice. I’ll be demanding ear drops or something. UGH, I just want to be well again.

March 17 was 90 days post-op, and I had promised myself by March 1st I’d be back in the gym again, toning up after all that downtime from surgery. And BAM instead I get a month of wheezing and staggering amounts of lung and sinus butter. I cannot believe the head and chest can produce so much phlegm. It’s disturbing.

Oh, to go back to endo for a moment - my husband and I were intimate on March 20 and I did experience dyspareunia afterwards, but it didn’t last more than a couple of hours. It was sharp, intermittent pain - the type I thought would get worse and last for days as usual. But it didn’t! YAY!

Going back to the ear infection - yesterday I was so depressed by not being able to get back into the gym that I literally cried.
The ear pain got so bad today that I had to plug my left ear for the last hour at work, and I felt like crying from the resonating noise (I work in a preschool in daycare mode this week, so you know it’s anything but quiet).

I got home and took Tylenol 3. I’ve been in a stupor ever since, but at least I’m dissociated from the screaming tinnitus (both high and low drone pitch simultaneously in both ears, plus the pounding eardrum pain in the left ear).

That’s all I’ve got. Great news on the endometriosis - keeping that in mind through this depressing flu season crap.

Day 53
Tuesday, February 8, 2011
Woke at 4:30am again and spent the rest of the night in twilight sleep again.
High burst of social anxiety while at work; had lots of vocal tics at lunch time, which was embarrassing, though thankfully no co-workers were around to hear it. Going for a walk did not calm me down. I took 1mg of Lorazepam, and still was not calmed down. Not surprisingly, the children did not nap for me. My energy was probably keeping them awake.

When I got home from work, the exhaustion set in. I took an hour nap, woke and did not feel refreshed. In fact, my whole body felt like it was seizing up. I went to bathroom and discovered my vaginal mucosa had changed colour. That means two things: 1) george will be early, and 2) nothing has changed with this second surgery with regards to my body wanting to become a pillbug right before menstruation each month.
My mid and upper back kept trying to seize up on me, so around 8:30pm, I took half a Tylenol 3. I could have taken Ibuprofen, but I also did not want to chance becoming wound up again, and did the ‘whack-a-mole’ or ’shotgun’ approach by taking the Tylenol 3 to keep me down. I went to bed at 9:30pm after I was falling asleep trying to catch up on all these damned journal entries.

Day 54
Wednesday, February 9, 2011
I woke at 5am and spent the rest of the night in twilight sleep…again.
When I got out of bed for the day, my body was still feeling seized up, and I was experiencing pelvic pain at about a 4 on the pain scale.
Took 400mg Ibuprofen, did stretches, loosened up a bit. Went to work.

During music and movement with the preschoolers, I pulled my abdominal muscles too taut and it stung inside. :(
By mid-morning, I felt something wasn’t right, so I went to the bathroom to check, and sure enough, I was spotting. It was dark brown and stringy. I was officially 2 days early. >:(

I wanted to see how bad the pelvic pain might get, if it came on at all, so I did not take Ibuprofen. The pain never happened! My entire back kept wanting to seize up on me all day, though. I toughed/stretched it out. When I got home, I meant to take 600mg Ibuprofen, but forgot, because it took all my energy to focus on getting internship practicum paperwork done, getting a load of laundry done, and making myself something to eat for dinner. I was in total zombie mode.
The spotting I had experienced earlier seemed to be a spurt, rather than anything continual, so I hoped I would make it to Friday before actual flow began. Still, being that exhausted did not bode well.
I slept on the couch between 8:30 and 9:30pm, waiting for my laundry to finish, and once it was done, went right to bed at 10pm.

Day 55 - TODAY.
Thursday, February 10, 2011
I woke at 5:30am and spent the rest of the night in twilight sleep again. :(
I was aware of the fact that I had pelvic pain, but I kept pushing it to the back of my mind. I was also aware of the fact that the knee pillow had actually made my knee pain worse overnight. The knee pain was sharper than the dull, gnawing pelvic pain.

When I finally did get out of bed for the day, I discovered that the spotting had turned to bright red flow. The moment I saw the blood, I began a mantra for today: “But it’s okay, because I’ve had the surgery.” On a deeper conscious level: “I will not let fear win out. I will be fine.”

I have two more days of work to get through, and a weekend to enjoy. I had sugery. I will be fine. No room for ‘but’ and other side thoughts. I will breathe. I will live. I will be fine. I had the surgery, after all.

The pain was managed on 600mg Advil for the morning! I got through an assembly and a work period - lots of kneeling & bending - I was ok!

Then the pain ramped up after lunch. :(

This was the EASY part of the day, and yet the pain ramped up. The director used triggering words with me; “I thought surgery was supposed to stop all the pain?” Even though I told her before surgery that it’s a HOPE, never a guarantee that the pain will stop.
The last job that uttered those words fired me.

Will I be fired from a second job because of Endo?

This is my 3rd menstrual cycle since surgery. I have reduced pain, but not enough - I still had to come home from work. I’m trying not to have a PTSD freakout over this.

When will pain relief start? 3 months post op? 4 months post op? Ever?

And then the anger sets in. I AM SO EFFING MAD!!!! I have spent the evening wavering between wanting to sob inconsolably and wanting to throw heavy things through the windows. I ended up sobbing for a bit.

To add insult to injury, one of my high school friends took over a thread on my facebook account, telling me I “should just have them remove the shit” so I won’t be in pain anymore. Then she went on and on about how grand life would be and that I won’t have to go on HRT at all and that I’d be totally pain free. She then literally said, “if you like the pain then keep your ovaries. I don’t have to have endometriosis to understand long term chronic pain.”

Seething with rage (which set off more pain), I publicly declared I was unfriended her, and followed through immediately so she would not have a chance to comment again. Then I wrote, “if anyone else wants to insinuate that I like being in pain, you can just remove yourselves now and spare me the fucking effort!!!”

She didn’t stop attacking me, however. She wrote me a facebook email with expletives, so I reported and blocked her.

I am so hurt and angry.

This led me to post a video from Kill Bill, which contains my favourite line: “…Now if any of you sons of bitches got anything else to say, NOW’S THE FUCKING TIME!”

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…