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.

…Annnnd a pain flare, 7 on the pain scale, shaky and nauseous, hits right before a school assembly. Kill me now.

…

12:30pm – I pounded 800mg of Ibuprofen on the way to work, and it kicked in by the time I was leading the children to their assembly. However, I had to be up and down, sitting or kneeling on the ground, and it was still quite painful. Add to that a woman with a broken foot seated next to me, and so I could not navigate around her with ease in order to sit in front of the class to direct them during their assembly song. As a result, the children did poorly, and I got in trouble from my head teacher for not moving back and forth from next to the students to in front of the students and back again. I told her about my pain and about the woman’s broken foot in my way, but she was still upset. Of course, she herself could have gone in front of the children, now, couldn’t she?
One of the parents (a friend’s significant other) told me not to worry about it, but I am. The whole ordeal was just bad, because the owner of the school’s husband insisted that my first and second graders learn and sing California Dreamin’ by The Mamas and the Papas.
WHY. WHY did my head teacher allow that song for a Secretary’s Day assembly? I went to her weeks ago vetoing the song, and pleading with her to confront the guy and ask for another song. But she told me she picks her battles with him, and caved in for that one, but won’t cave to him for the graduation songs. Of course, SHE picked the graduation song to be You’ve Got A Friend by James Taylor. It’s a more poppy version by another artist, but still, it’s that song.

I meant to rant about my pain, and it turned into a rant about work politics. But there you have it. And I’ve popped another 800mg of Ibuprofen for the pain to keep it at bay.

Today my students went to Chabot Space & Science Center for a field trip.

Of course, this is when the pain level decided to reach a 7 on the pain scale. I had to use the elevator because I could no longer navigate stairs. My legs were at first weak and shaky, and then the radiating nerve pain began down the outer side of my right leg. This of course was happening alongside the intermittent stabbing uterine and ovarian pain. There were some excruciating pain moments, resulting in me grimacing.

Thankfully the facility has an elevator! Thankfully the head teacher was also on the field trip, as were five parents who helped drive everyone. Today was a heavy day, so I was in the bathroom a lot. I missed out on the Bill Nye science lab as a result. Meh. I’ll have to go back again with friends.

For visual, here’s what my pain looked like – it’s a 6.5 on the Allie Brosh pain scale:

But hey! I’m still not bedridden! Go Gabapentin!

Also, I’d like to note that I have not taken Tylenol 3 for the past two cycles at least, nor have I sought to refill my prescription.

I’d like to further note that since clearing my body of regular Tylenol 3 intake, and starting on Gabapentin, my allergies, atopic dermatitis, asthma and multiple chemical sensitivity have backed way off. So there it is – after years of being on Tylenol 3, I’d simply overloaded my kidneys and liver, and just needed a good detox.

Funny how being forcibly hospitalised and medicated can actually be turned around to be a good thing.

But I’m still bitter at how it all had to go down.

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.

Let’s start with a review:

My second laparoscopy was December 17, 2010, in which I was diagnosed with new endometriosis growth, and put at Stage I.

My surgeon found endometriomas on both ovaries, and cleaned out as much as she could. She removed a 1.4cm endometrioma from the right ovary, and had to leave the endometrioma in the left ovary, because it was too deeply embedded, and I did not want to lose my ovary. There were adhesions pulling the left ovary back towards my uterus again, just like in 2007, so she cut away the adhesions and repositioned the left ovary as best she could.

I spent the next three months healing from the surgery, and still experiencing debilitating pain. However, between pain cycles in May and June 2011, I experienced 20 and 17 consecutive pain-free days respectively – the highest number of consecutive pain-free days EVER since I began meticulously recording my cycles.

In fact, for the entire year of 2011, I never fell below 10 pain-free days in a single monthly cycle, which was an improvement over the year before.

Beginning in April, 2012, I experienced moderate nausea on the 14th, 17th and 19th (throughout my cycle). I had to take ginger tea, the nausea was so intense. This to me usually signals an ovarian cyst, so I called my surgeon and scheduled an ultrasound.

Then, on May 3, 2012, something unexpected happened, that has (I think) nothing to do with the endometriosis.

On May 2, 2012, the workplace had the carpets cleaned as per routine, but when I walked in the building on the morning of May 3, I immediately had respiratory distress. Now, I have a history of breathing problems and chemical sensitivity dating to 2009, when the interior of my apartment was sprayed by an exterminator for ants at the landlady’s request. But I’d never had wheezing issues or felt like I was drowning in lung fluid before.

On May 3, my breathing got worse over the time I was waiting for a backup assistant to come into the classroom, and by the time someone arrived, I was a sobbing basket-case from not being able to breathe. The director of the school drove me to my doctor’s office, where I had some preliminary tests run, and was given an albuterol inhaler and an epi-pen. I was told I probably have asthma.

Three weeks later, I finally got to see my allergist, who ran me through a computerised breathing test, and detected a ‘lung blockage’ and gave me a steroid inhaler. Within 2 days on the steroid, I had ‘roid rage’ and discontinued it. I continued taking the albuterol inhaler, though. Four weeks after that, I was given another computerised breathing test, and nothing had changed. I was given another steroid, and this one worked for about three weeks, at which time I became clinically Manic on the stuff, so discontinued it. I have used the albuterol throughout, as a ‘rescue’ inhaler.

So the ovarian cyst took a back seat to a new health condition; asthma.

I researched whether asthma is also an autoimmune disease, and was dismayed to find that people don’t really know much about how asthma develops. Even my own asthma specialist doesn’t know if asthma is autoimmune.

The reason I want to know is twofold: first, endometriosis is autoimmune, and when a person has one autoimmune disease, it means they have other concurrent as well as other undiscovered autoimmune diseases.
Second, there have been cases of lung endometriosis.

My family has a history of bronchitis, emphysema and endometriosis, so this is something I should be concerned about. I’ve never smoked cigarettes, but I did grow up in a heavily industrial and polluted area with pack-a-day cigarette smokers. I’ve always been sick with sinus infections and bronchitis every winter and/or spring.
Oh and hey, as of a 2010 study, it appears that emphysema may be autoimmune. File that away for potential future reference…

In the meantime, my periods were getting worse, and I was back to being fully bedridden during each cycle – something I’ve not had happen regularly since before surgery in December, 2010.
This means I had just over a year and a half of slightly improved health from surgery. That is to say, I had a longer uptime between periods, and one or no bedridden days per cycle, BUT I am still getting up to 7 or 8 on the pain scale at times, I am still experiencing heavy bleeding, and I am still consuming Tylenol 3.
Basically, it boiled down to “I’ll take what benefit I can get from the surgery.”

Once I was being treated for the asthma, I went back to address my worsening symptoms, still suspecting an ovarian cyst. On July 11, 2012, I saw my surgeon, who performed a vaginal ultrasound. She detected a 7mm (0.9cm) endometrioma on my right ovary.

For those who are questioning, YES, it IS possible to detect endometriomas through vaginal ultrasound. My surgeon visualised the 1cm endometriomas on both ovaries in September, 2010; three months before my surgery (more on sizing in a moment).

So my suspicions are correct in that I once again have an ovarian cyst, but I had not anticipated an endometrioma. I thought it was just an ordinary cyst, and I wanted to get specs on it to make sure it wasn’t too large to reabsorb.

What I got instead was really bad news; an endometrioma does not reabsorb or go away.

Ovarian cysts are formed when the egg doesn’t fully release from its follicle, and just keeps growing inside of the follicle. The cyst can live in or on the ovary, or in the fallopian tube, and most often goes away on its own, despite causing some nasty pain and/or nausea while it is present.

An endometrioma is “a tumor containing endometrial tissue.” Endometriosis has traveled outside of the endometrium and has embedded itself onto or into the ovary, where it begins to grow. It is called an endometrioma when it goes from being an embedded implant to a growing, swollen, fluid and blood-filled foreign mass. It is now called a tumour.

I’m told that endometriomas are not considered a threat under 4cm in size. Past that, one should be closely monitored in case the tumour turns malignant.

We discussed how to manage the endometrioma and the endometriosis in general for the long term. My surgeon knows I will not take hormone therapy. I made it clear to her that I also do not want any further surgery unless my life depends upon it. I told my surgeon that I just want to be made comfortable til I hit menopause. I want pain medication and pain management. I’ve already put myself back into acupuncture, massage and naturpathy for alternative healing.

My surgeon exclaimed that it’s such a long time before I hit menopause. I told her no, my Ma hit menopause by age 43. My surgeon has referred me to a pain management clinic, and is still urging me to try the Mirena IUD, which puts out a small amount of levorongestrel (the same ingredient as in emergency contraception called Plan B). Due to my extreme sensitivity to hormones in the past, I don’t care how small the dose is, I’m not touching any further hormonal therapies.

I had a phone call with my Ma today, and confirmed that she hit perimenopause by the time she was 40, and was definitely in menopause by the time she was 43. She said her mom also had early menopause.

So that’s where I am at…waiting for menopause to hopefully burn the endometriosis out. It’s a hope, with full knowledge that it might not work.

It seems my period is late every month!

I just looked back through my calendar dating back to surgery on 12/17/10, and I see a trend.

My cycle is no longer 25 days.

It’s more like 27 or 28 days again.

It’s been 16 years since I’ve had a cycle of that length. :(

I’ve had anxiety for the past two days, thinking george was late. After all, I have this week off of work BECAUSE george was due.

In the summer time, the school I work for reduces staff hours, because we do not have full enrollment. The director tries to give everyone a chance to work at least half the summer, so a lot of schedule shuffling goes on to try to make it fair enough for everyone. Because of my known health condition, the director simply does not schedule me during the weeks that I could miss so much as a day of work from endo pain, so that another teacher who wants a full week can have it. I understand the rationale. I’m just glad they don’t do this to me throughout the regular school year.

So this week was slated off work, because george was due on Monday.

Well, here we are at Wednesday, and still no george, and I ended up giving myself an asthma attack over it this morning, due to how anxious I am. I kept asking my husband if there’s any way I could be pregnant, and he keeps reassuring me there’s no way.

“Wait. Asthma?”

Yep! I’ll tell you all about it in another post.

…Nearly four months later, my website is, to use a Monty Python voice, “no longer infected”.

After doing two rounds with my web provider’s technical support, and selecting auto-upgrades of WordPress from there on out, my site was still being flagged as malware. It was so bad that I could not even log in. So I walked away from it.

In that time, the web provider did massive upgrades to their servers. I’ve been getting emails letting me know about it. This morning, with the latest email announcing a completed server move/upgrade, I decided to check in on my websites, and lo, they are no longer flagged as malware, AND I can log in.

So, Hello World. We start again.

Just in time for Endometriosis Awareness month, my WordPress blogs got hacked!
I swear, it happened on the eve of March 1st.

A month was spent trying to figure out where the hack was, talking to friends, and getting help from my web provider. They ran some kind of script to clean all my files at the code level, which worked for roughly 24 hours before the hack reasserted itself, and then the web provider threw up its hands and gave me a manual on how to unhack my site myself…at the code level.

My friend Ray helped me out further by forwarding me a user discussion on the hack, since it appears to have hit globally at the end of February.

Well, I must have followed the instructions correctly, because the sites look clean.

So here I am, back online, just as another endo flare is setting in. I plan to do an update for the month of March, as I had a whole lot of positivity going on despite the site hack.