I Will Not Suffer In Silence

The pain abated by Friday. This cycle, I had two days of 7 on the pain scale, and three heavy days altogether. I wasn’t bedridden and I didn’t take time off of work, but the high number on the pain scale is alarming. I hope I’m not plateauing on the Gabapentin already. I will talk to my shrink about increasing dosage again.

Friday night, I did an overnight tour on the U.S.S. Hornet for their ghost hunting adventure. I helped lead people around the ship into the wee hours of the night. I had intermittent cramping because of all the ladders I had to climb, and all the walking I had to do on the aircraft carrier. But I was glad to be away from home. I spent the night in the Torpedo berthing area with a bunch of other women, and I left right after breakfast the next morning.

I slept for most of the day on Saturday, because I’d gone to bed near 4am and hardly slept. Women had chatter going on, or early alarm clocks set. I swear, they were up at 6am. The navy reveille sounded at 8am, but I was already up and loading my sleeping bag into my car by that time.

Sleeping in is always a problem for me these days, because my depression worsens when I don’t have to be up and about, doing things to forget that divorce has happened to me. And yet, I’d only slept maybe 2 hours, so my body was exhausted – I had to sleep when I got home. When I finally got out of bed, it was near 6pm. My friend texted me and asked if I’d like to go out with her to one of her DJ gigs, and I leapt at the opportunity to get out of the house and thusly my depression.

We didn’t get home til about 2am, and I slept in again. I should have just scheduled myself to go back to the U.S.S. Hornet bright and early, but there it is again – that fine line between prolonged sleep deprivation and depression. Too much sleep deprivation leads to more depression. Sleeping in on weekends leads to more depression. I feel like I just can’t win.

I have to be somewhere in a couple of hours, so at least I can forget about the depression again for awhile this evening. Then it’s back to work again tomorrow for an intense week of state exams for my poor little first and second graders.

I continue to marvel at the lack of being bedridden since starting on Gabapentin.

My most recent endo pain flare began last week, with intermittent stinging pain in the uterus and left ovary, which lasted for a couple of days.

Then, without warning, george showed up yesterday, a day earlier than I expected. Then the crushing fatigue set in.

I consumed 1,200mg of Ibuprofen yesterday, and another 1,200mg today, and managed to get through the work day. I have gone to bed early for the past two nights – I’m in bed now and will be heading to sleep very soon. The full body fatigue is as I said crushing, and it is a symptom of endometriosis.

Ya know, I have a rant.

One of the big things my ex told me he was leaving me for was because “you have a need to let people know you’re in pain, all the time.”
He was referring to me posting when I’m having an endo flare, about me having specific friends who also suffer with endo whom I can relate with, and my ongoing endo blog.

What also really pisses me off is… had I listened to my doctor years ago, and started taking Gabapentin, I might not have been in this divorce boat, because I’d not be bedridden and therefore not such an invalid in my husband’s eyes.

I have suffered shaming and guilt all of my life – first through my parents, then with the endo, and now with my ex. Part of my rage is because he shamed me by having not just an affair, but holding it in my face, in the clubs, for my friends to see and ask me about. He lied to me when questioned. He lied for months until he got sloppy. And then he cites one of the reasons for leaving me was that he doesn’t like me being vocal about my illness.

So instead of being shamed to silence, I will remind the world of my blog’s name: I WILL NOT SUFFER IN SILENCE.

More to the point, I will react like O Ren Ishii upon one’s attempt to shame me into silence.
He got publicly castrated and financially burdened.

As mentioned in my previous post, I have not been bedridden but for one day in…officially five months, now.

I’m enduring a new endometriosis flare, which is why I decided to post to my blog. While not currently bedridden, there is always the chance that the pain will get bad again as the endometriosis continues to grow, so I greet each non-bedridden day with a sigh of relief.

My head teacher is out of work this week with the flu. I had the flu back on February 8th, but Ms. V has it *really* bad. I filled in as head teacher yesterday and today, and will do so again tomorrow, so I’m hoping the pain doesn’t get any worse than it already is (I’m currently about a 6 on the pain scale).

I’m also down to my last few Tylenol 3 pills, so I have to be at a 7 or above on the pain scale before I can justify taking any. I just sent out a request on Facebook for anyone who is willing to score me some Tylenol 1 pills. It’s not Tylenol 3 but it is easier to purchase, especially if one lives in or really close to Canada, where it is sold over the counter.

I was supposed to start seeing a pain management specialist in the fall of last year, but finding out about my husband’s affair ended my rational world, and I could barely keep myself alive, much less pursue time off work for pain management appointments. I’m still in the woods psychologically speaking – the depression comes and goes, taking steep dives regularly but thankfully not every hour of every day anymore (thanks to Gabapentin and Zyprexa and Vitamin D).

I found out that I can remain on his insurance, but do I really want to? It’s just one more thing to keep me tied to him.
If I join my workplace’s health insurance of choice (Kaiser Permanente), I will have to pay a huge co-pay each time I do pain management and doctor appointments, until the deductible is met, and I don’t have the money to do that.

I don’t know which way to go.

As if going through a divorce and still dealing with medical crap, and all the associated medical bills isn’t enough… I had to put my cat to sleep on February 12. Kijika (Kee-yee-kah) had pancreatic cancer which had spread to his liver, and he was already end-stage renal failure. He lived a long life – less than a month shy of age 17 – and I did the best I could for him. I spent two days crying, but I had seen that day coming for nearly three years because of the renal failure, and since last September for sure when he got the cancer diagnosis. I am having him cremated and I will keep his ashes in a cedar box that the Vet is putting together for me.

My girl cat Zenaide (Zeh-nay-ed) has been wandering the house meowing with force, and it’s been driving me crazy. I finally caved in tonight and let her sleep on the bed – something I haven’t done since the last time I lived on my own (back in 2003).

That’s all I’ve got update-wise for now.

I have been away for six months. The reason is that my husband had a physical affair which took me two months to prove, but once I did prove the affair, I was genuinely surprised that it WASN’T all in my head. I never thought he was capable of such betrayal from a person I spent TWELVE YEARS with. I was a complete basket case for three months, attempting suicide multiple times, and ending up in hospital for a week.

The good thing in all of this, as it relates to this journal, is that I was forcibly medicated with Gabapentin (Neurontin) as a mood stabiliser.

Gabapentin was recommended to me by my surgeon back in 2010, but I was too afraid to take it because of the listed side effects. I always hit into the rare category of side effects on any medication.
Now, being told in hospital that I would not be released unless I took medication, I had to give it a try. They started me out on a very low dose – 300mg – and I got head, arm and hand tremors. So they reduced it to 200mg and my mood improved fantastically.

What I also found out is that the neuropathy and severe pain were reduced to the point that I WAS NOT bedridden for the next FOUR MONTHS!!!

Last month’s cycle had me bedridden for one day, and this month’s cycle is hurting me enough that, had I gone in to work today, I’d have come home early due to the pain. Thankfully, today is Martin Luther King, Jr. Day, so I did not have to work. Hopefully by tomorrow, the pain will have abated again.

The bleeding is still heavy every cycle – that has not changed. But going from 3-4 days bedridden down to 0-1 day is a huge, positive change.

The Gabapentin has also helped me with chemical sensitivity – I don’t know how but it has. The nerve channels are blocked in the brain and the message that says, “I’M DYING” from the pain and from scented products is no longer getting delivered. The threat level has been reduced to, “Oh, that’s unpleasant.”

So I am thankful that I am on Gabapentin, now, but holy shit, what a path to travel to begin taking it.

I’m still not out of the woods, emotionally after the affair. There is no reconciliation – he declared he was in love with this woman, WHOM I USED TO BABYSIT FOR, and he said horrible things to me. One of the things he said with bitterness is that I have a need to continually let people know that I’m in pain, whether emotional or physical. I told him that my endometriosis blog exists for the very reason of letting people know I’m in pain, because talking about pelvic pain is still taboo, and people like me are putting a face to it. He told me he didn’t like that. He told me he couldn’t care for me anymore. He told me he didn’t love me anymore. And then he went back to HER, so I kicked him out of the house. He came back almost a month later to officially move all his crap out of the house, and he tried to take the bed, the couch, the dishwasher, the toaster and the microwave with him!!!! I forbade him to clean me out and threatened to call the police. I then hired a lawyer. He is the one who filed for divorce. The proceedings cannot happen quickly enough, but I want to make sure I’m not getting screwed. I cannot trust this man to be honest about *anything*, which is why I’ve hired a lawyer to check all paperwork he sends and all paperwork I have to fill out to get back to his paralegals.

It took me roughly five months to even accept that he was in his right mind, that he was capable of hiding so much of his sinister life from me. But then I found a thumb-drive with a bunch of his files on it, and it included letters and mix-tapes he sent to ANOTHER woman back in 2009. This appears to have been an emotional affair, but it lasted TWO YEARS. The affair began three months BEFORE our honeymoon…so only three months into our marriage. We’d been together for 8 years before we got married, but according to some of my guy friends, the very act of getting married scarred him or something, and he immediately regretted the committal, despite already being with me for 8 years.

This is why I have not posted to my blog in so long. I don’t know how often I will post in the coming months. My endo is fairly well-managed for the time being, but my emotional state is still shot.

The state of my insurance is up in the air – I don’t know how much longer I’m covered under his insurance policy, and my workplace only offers Kaiser insurance, which is a crappy HMO insurance. I’ve rationed the last of my Tylenol 3 for the past six months; I haven’t had ANY in five months – but I finally relented and took a half a pill today.

So much change. I want 2013 to bring me peace and happiness. I want to start healing both emotionally and physically. I write these things with the full knowledge that I also wish I just didn’t have to breathe, anymore. I’m so emotionally exhausted.

(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.