Late February cycle

I had about 12 consecutive pain-free days from last cycle til this one.

I began getting intermittent uterine and ovarian cramping on February 16, when I was feeling sad and missing my grandmother, as it was her birthday. She’s been gone for 25 years, but I still grieve for her.

Two days later, I spent the day grieving for a friend who’s been gone for 9 years. Every year around the time of his death, I get little reminders seemingly from beyond, that he’s still with us somehow. Because I was sad, I got cramps again.

A few days later, my husband returned from a weekend-long gaming convention, and I was happy to see him, so we were intimate. The next day, I experienced either dyspareunia or premenstrual cramping, and then a day later (yesterday), george appeared two days early.

The thing is, I think I brought it upon myself. I’ve had a rough month emotionally, as I’ve been really sad for people who have died. And then I had a really bad day at work, wherein I got emotionally involved with a child who was having tantrums. When I tried to lead her out of the room so as not to cause further disturbance to the class, she had a big meltdown. I picked her up to expedite the removal from the class, and she wriggled free and fell to the floor screaming. My face was beet red with embarrassment and also with anger. In my effort to do the right thing (get her out so as not to disturb the lesson taking place in the classroom), it actually sped up the child’s complete meltdown.

Within minutes, I felt a trickle and a hot sear of pain, and I knew that I had made not one but two bad choices: taking the child out of class and causing myself a release of stress and anger hormones, which flooded my system and started the endo flare.

And I was supposed to be the head teacher all this week, as my head teacher is on a family retreat.

As soon as I got the child stabilised emotionally, and made sure the assistant teacher in the class was still running things alright, I called upon the director and the afternoon supervisor for help in finding substitute teachers, in case I could not make it in the next day.

This morning, I woke determined to get SOME work done. I wrote:

Attention: I am going in to work. Endometriosis can DIAF.
I’m the boss, dammit; I call the shots in this body.

 
I got through 5 hours before the pain and exhaustion took me out of the game. Then I came home and passed out for 3 hours with second round Ibuprofen and heating pad. Outside, we had an unusually warm and sunny winter day – it was in the 70′s, which is weird even for California. In February, it’s supposed to be raining hard all through February.

But because of george, I missed a beautiful sunny day, and I will miss it again tomorrow, too.

I spent the rest of the day today couch-ridden, working on importing endo blog posts over to Facebook.

The pain has been steady throughout the day, and I resorted to taking a half Tylenol 3 pill in the evening.
After dinner, I needed the other half pill. I’ve consumed 2,000mg of Ibuprofen today. The pain has been constant at 7 on the pain scale.

This evening, still in the thick of an endo flare, I counted out the days til the next one.

The next endo flare is due on the anniversary night of one of my favourite night clubs.

I’m seriously thinking of showing up – even if I have to arrive in my wheel chair. I AM SO FURIOUS WITH THIS ILLNESS TAKING JOYFUL EVENTS AWAY FROM ME.

Early February cycle

February 2, 2012
~7:30am
Today is the cautious day. I am moving slowly about the house, trying not to stir up the Endo hornet nest. Gonna try to go to work today.

8:05am
And the doom just ramped up, but I hadn’t arranged for a sub cuz I was sure I’d be able to go in. Now I have to go in and wait for the late morning shift to arrive to hopefully stand in for me. It’s going to be grueling. Why do I do this to myself? Oh yeah, cuz I’m stubborn.

~12pm
barely maintaining on 1,400mg of Advil

~1pm
Today’s my long day. Working til 6pm. Kill me now.

~7pm
Today was brutal, but I survived work on 1,400mg of Ibuprofen and a heating pad. The children were super at helping me out. ♥

February 3, 2012
~11am
Rough day for me today. I thought the endo flare was over, but it returned while at work. Came home sick for the third time this week – just like old times before the last surgery. :(

~6:50pm
Feels later than it is. Normally that would be a good thing, but with all the pain and meds I’ve had today, I just want the day to be over.
> > Nate (my friend): did you rest?
Me: Hah, of course not. I’m stubborn. I have been couch-bound all day, though, does that count?

~11:59pm
Okay, I’m finally giving in and going to bed. I spent the day couch-ridden, but productive. I have gone through most of my stockpile of news articles and research bulletins – I have enough to post one a day for the month of March (National Endometriosis Awareness Month)! Will continue stockpiling research, of course.

February 5, 2012
Saturday was a cautious day for me physically after spending a week w/ an endo flare. I was excited that my body was able to do the Time Warp at the Castro Theatre. HOORAY FOR UPTIME! Time to LIVE LIFE until the next flare, around Feb. 24. I want to go out dancing every Friday, and I’m going to really try to get to another favourite dance club on Mondays right at 9pm as often as I can.

(Later that evening…)
Whoops, I guess I’m not officially in uptime, yet. Had great energy all day, cleaning the kitchen and bathroom. Went grocery shopping with my husband, and on the way out, I zoomed the grocery cart like a giant scooter all the way back to the car. Now my legs are shaky and I feel a bit nauseated. So I’ve been saying for the past few days, “okay body, TOMORROW then.” I say it again. Okay body, TOMORROW then…it will be uptime.

February 6, 2012
You have GOT to be kidding me.

This is the second woman in the last two years to have completely faked an attempted suicide and resulting coma. I now doubt whether she has endometriosis, or any of the listed medical conditions she talks about. Trust is completely destroyed, and now I’m hearing rumour there’s a third. Seriously, I gave these strangers a chance. I accepted them at face value, because they said they go through what I go through with endometriosis. I am ready to unfriend all of them because of three women. I am ready to shut down again on humanity – the way I used to be back in the early to mid 1990s. I was Mean Not Nice. Everybody deserved my wrath. Everybody was guilty until proven innocent, and even then, people got a squint of mistrust. Is that what I need to go back to? I know it’s not, but damn that’s how I feel right now.

Dear New Year: You’re Doing It Wrong.

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

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

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

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

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

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

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

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

 

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

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


 


 

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

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

 

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

And for my next trick, a pinched nerve!

(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

November cycle

Reposted from facebook:

November 14, 2011 at 8:08 am
In the You Have Got To Be Kidding Me department, one of our listed helper substitutes just told me she can’t come in for me today because she has to go grocery shopping.
I’m in too much physical pain because of endometriosis, and you have to go grocery shopping? Are you leaving for the store right now? Will it take 8 hours to get your damned groceries?

November 14, 2011 at 9:25 am
This morning, while trying to convince myself the pain was not ramping up, I consumed two bowls of gluten-free granola cereal and a protein bar, and STILL got a hypoglycemic attack, headache and nausea.
I only get hypoglycemic during an endo flare.

November 15, 2011 at 7:57 am
Going to try to work today, despite the endometriosis pain.

November 15, 2011 at 5:40 pm
Thanks, everyone! Your thoughts helped me survive the day! I also needed a ThermaCare heat wrap and 1,100mg of Advil, but I got through it amazingly enough!

November 17, 2011 at 7:44 pm
Unexpected recurrence of endo pain today – thought it was over by now but no…another cylon attack. Then I came home to cat pee all over the kitchen counter…AGAIN.
FML

Tired of always having to play catch-up

How is it that October’s cycle never got recorded here? I have a memory of writing it up!

I’m so upset that I have to first catch up on October before proceeding to November.

This blog is firstly for my own good, so I can track changes cycle to cycle. I can’t believe I didn’t make time to chronicle October.

Every month, it seems that I have to go back through my iCal, Twitter and Facebook accounts to piece together what the pain was like. I no longer keep a running log on this site.
It’s all real-time, in the moment on social networking sites. But the problem with that is once the feed scrolls, it’s gone. Out of sight, out of mind. What caused the pain to increase or decrease over a certain cycle? Oh I dunno, I posted about it over on Twitter and/or Facebook instead of HERE!

GAH.

Day 3 of July cycle

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.

Must stay positive

Today is Day 82 post-op and Day 3 of my period. The quaking pain woke me just before 5am.
I finally crawled out of bed just before 5:30am because the heating pad was not touching the pain. I ate a protein bar and took a Tylenol 3 as I sat on the couch. Sitting upright helped ease the pain, but my left leg went numb. I sincerely think the nerve bundles in my pelvis, which travel down the back of my legs, get compressed when I am sitting, and therefore ease the pain a bit. I have the most benefit when I sit on a hard wooden chair when in menstrual pain. It’s weird that the nerve in my left leg got so compressed that blood flow was cut off – I was just sitting on the couch with my legs up. I’ll take the pins and needles feeling any day over the white hot knife plunging and twisting feeling. Alas, I’m still experiencing the knifing, too.

Let’s see…good news…I had only minor premenstrual pain. My worst pain day was while I did a three mile walk, and I was smack in between menstrual cycles. The day after the walk, I experienced the feeling of surgical adhesions being pulled, especially when I stretched upwards. It’s just a tight feeling, not searing pain or anything, but still concerning. I want things to be loosened up. Gotta remember to start the castor oil packs like my naturopath recommended.

The actual premenstrual pain started two days after the 3 mile walk I did. I had mild, intermittent cramping on March 1, 2 & 3. I began spotting on March 7 in the early afternoon. Later that afternoon, I took 600mg Ibuprofen for mild cramps. The spotting turned to flow the next day, and I required a total of 1,200mg Ibuprofen within an 8-hour span. That was yesterday.

Then I woke this morning just before 5am with the searing pain.

6:30am Update:
My cat Kiki is being a good nurse to me again – he’s laying on my belly, which adds to the weight of the heating pad, which helps ease my pain. Bonus, he’s purring.

6:54am Update:
Mischief Managed. The pain is dissociated enough from the drugs, now. It feels like a fingernail is poking into my pelvis but I’ll take that over the white hot knife stabbing and turning feeling.

7am Update:
Kiki is still crashed out on me – and still purring. It’s disgustingly cute.

7:20am Update:
It’s been an hour and my cat is still purring, still laying on me! Unfortunately, I need to disturb him so I can get ready for the day ahead. I know, call me crazy, but I told work I would be in after my post-op appointment. I refuse to concede defeat, so I will proceed according to plan until my body tells me no effing way. That and if I need additional doses of Tylenol 3, there’s no way I’ll go in to work and be around children on narcotics.

Kiki seems to sense I need to get up, and so he yawned and gently walked off of me. Love my kitteh.

Nearly two months post-op.

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!”

Second Laparoscopy: Day 45 – 52

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’m nearly two months post-op now, and I am just getting back into my regular old mobility mode. I’m due for a period on February 11, so we’ll see if the pain comes back or what. I have been experiencing symptoms (alternating ovarian stabbing pain), and I still have the pain with sex (but I’m told that’s a different diagnosis altogether – dyspareunia).

For medication, my cocktail is Tylenol 3 and Ibuprofen gel-caps. I have tried all the NSAIDs, I have tried opiates and narcotics all the way up to Dilaudid and back again. I have tried medical marijuana. The only thing that helps dull the pain with minimal side effects to me is the Tylenol 3 and Ibuprofen.

For pain management, there is yoga, and also the Alexander Technique. I like bicycling, dancing and roller skating, but I cannot do these things when the pain hits.

I went back to not eating pork, beef and other red meats, as well as fowl. I’m vegetarian plus fish, now, though I also omit crustaceans because they are said to set off the pain, too, and in my case, it held true. :/

I have a whole list of foods I avoid on my No Fly List, and then there’s the vitamins and supplements list.

I am hoping that with each month post-op, the pain relief will increase. That’s where I’m at…