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…

Second Laparoscopy: Day 27 post-op

Thursday, January 13, 2011

Every muscle in my stomach felt pulled that day, probably from all the exercise I had since Monday night. I went dancing Monday, I lifted a 19lb box Tuesday, and did leg lifts Tuesday night.
Because of the pain I was in on Wednesday, I barely took any exercise. My left leg had increasing calf pain all day, too. It felt like I pulled a muscle. I realised after analysing it for hours that my calf muscle was strained because while sitting at the kitchen table doing homework the day before, I had been bouncing my leg the entire time.

I spent most of Wednesday in a bad mood. I was pretty sure it was PMS at that point.

On the good news front, I finally got my patient records in the mail. The bad news is that it did not include the original copy of my disability paperwork. I was very angry. I wrestled with the phone tree for Mt. Zion patient records, was transferred over to UCSF patient records, who said they cannot send originals of anything once it goes into patient file, and they referred me back to the assistant surgeon (Dr. Skillern) who put it in my file instead of giving the disability paperwork back to me in the first place. Oh and I love how she blamed my husband for not getting the paperwork while we were in the hospital:

“I spoke with Dr. Skillern regarding your disability form and she said she filled it out and file it in your hospital chart. Per Dr. Skillern she mentioned this to your husband after the surgery. I thought she filed it in your chart for our clinic. This means that you form is in the hospital medical records department. Either you will request a copy of the form from UCSF medical records department or you can send us another blank form and I will have Dr. Skillern fill it out.” (email correspondence w/ one of the nurses on December 23, 2010).

You know, obviously it’s my husband’s fault, because he did not have enough on his plate already with his wife having gone through surgery with complications, having to be admitted overnight, and he had perhaps 2 hours sleep the night before my surgery due to nerves, and he had to drive home and come back the next day, again on very little sleep, with the urgent notice that my red blood cell count had taken a dive and that I might need blood transfusions or more surgery. CLEARLY it is his fault for not recalling that Dr. Skillern mentioned to him that my disability paperwork was in my patient file and to retrieve it before we left the hospital. OBVIOUSLY Dr. Skillern was far too busy to just set the fracking paperwork on the table next to my hospital bed, and instead had to go the long way around, like she always does.

Had I mentioned how angry I was on Day 27 post-op?

After spending an hour going through phone trees and email with the UCSF nurses, I finally just made copies of the copies so that I had something for my home file. Then my husband drove me to the nearest disability office. To our utter joy and amazement, there was no one else in that office, and someone took my paperwork and said that copies were just fine and everything was in order! I was told that I should be hearing back in a week or so!

Spirits lifted a bit, I did a little bit of homework at the end of the night.

Second Laparoscopy: Day 26 post-op

Wednesday, January 12, 2011. One o’clock pm.

I AM SO MAD!!!

I got a copy of my December 28 blood test results to take to my doctor appointment on Wednesday, and right there in bold text, it shows my red blood cell count is low and my eosinophil white blood cell count is through the roof! The eosinophil count was 1,900!!!
‘Normal’ is 15-500! It was flagged as HIGH and everything, in bold text! How could these people miss it?!?!?

I had puked my guts out on December 26th, and I had pain and bloating under the diaphragm, as well as itching all over my trunk from December 26-28th. I was having all sorts of issues and my surgeon’s office kept saying ‘you’re fine’. At my post op on January 5 I was still getting ‘you’re fine’, even though I felt like crap.

Then Monday January 10 I get a call from them saying “uhhhhh can you get a new blood test”?

How can they let THIRTEEN DAYS go by before really studying my blood test results and seeing some kind of major infection going on!

At my January 5 post-op appointment my surgeon’s assistant said “so and so got the results and said it looked fine.” The surgeon asked, “Do you have the paperwork?” The assistant replied “No, it’s at the front desk.” Instead of going to the front desk to get the paperwork, my surgeon asks me, “Do you want to get more blood work done?” I looked at her funny and said, uhhh, no…if you think my blood work was fine…” And my surgeon replied, “Oh! Well okay, you’re fine!”

I am SO MAD! I am kicking myself for not saying GO GET THE DAMNED PAPERWORK YOU LAZY ASSHATS!

ARRRRGGGGHHH!!!

After I settled down from my rage a little bit, I went outside and climbed the stairs to the building I live in. I ascended the stairs SIX TIMES. This is a first. My previous record was three times, five days earlier.

Firsts for today:

  • Climbed stairs 6 times.
  • I lifted a 19lb box of school work and carried it from the bedroom to the kitchen, spent the afternoon doing homework. Then I carried the box back to the bedroom and lifted and put it atop a 46″ tall dresser. This is the most weight I have lifted since surgery, and it did cause some discomfort, but I wanted to test my limits.

 

Complications/Complaints:

  • Dizzy and weak after stair climbing – despite a full meal an hour beforehand.
  • Mild to moderate pelvic and low back pain all day. It got bad enough at times that I wanted to take Tylenol 3, but I’ve become seriously revolted by the stuff since my big scare on December 27.
  • Still having diarrhea – this time after dinner. It could be food sensitivity, though; I ate sushi, and some of it had avocado, which has given me diarrhea since 2010 when I became more sensitive to things in the latex family. I had also drank some miso soup, which I have had sensitivity to as well. After dinner, I had cow’s milk ice cream (w/ 2 lactaid pills). So much food – I was plagued by internal gas and too full a feeling all night – it finally simmered down by 11:30pm.
  • I’m PMSing. I can seriously feel the uterus thickening. I’ve begun to have major sugar cravings. I found and ate ALL the chocolate in the house. I drank sugary pop twice that day. I am angered at the drop of a pin.

Second Laparoscopy: Day 25 post-op

Tuesday, January 11, 2011

I completely exhausted myself between Friday and Monday, and this was evident because on Tuesday, I slept all day. During my waking moments, I was depressed, because I’d discovered that my cat was still peeing on stuff. On Sunday, he’d peed on the bathroom rug. Sometime between Monday and Tuesday, he peed on my homework on the kitchen table. The last time he did this, I had to tear apart my entire Mathematics album and reassemble it (thank [insert deity here] for page protectors, but my handwritten notes were ruined, because they were the only things not in plastic page protectors).

Upon seeing that my cat had peed on my homework again, I broke down sobbing.
Thankfully, upon closer inspection, he’d only gotten the box of page protectors and the outside of my Language Arts album. I threw away some plastic pages and cleaned up the outside of the album, and cleared off and disinfected the table, all while sobbing. My husband stood near me, arm around my shoulders, the whole time. He had asked if he could help and I let out a muffled ‘no’ and continued cleaning. He knows me well enough to know that he was giving me all the support I needed by just being there with his arm around me.

And then, the old idiom, “when it rains, it pours”. I discovered that my surgeon’s assistant (not Skillern, but Wang, the more polite one) had left a voicemail for me about my December 28 blood work. You know, the blood work results that they didn’t bother to fetch from the front desk at my post op appointment on January 5th. The blood work that I had gotten a call about the day after my blood was drawn, saying everything was fine. That blood work.

I called the surgeon’s office back and played phone tag, and fretted. Finally, Dr. Wang called back again.

Turns out that AFTER my post-op visit on January 5, my surgeon decided to actually go and look at the report herself, rather than rely on the “ummm” and “uhhh” of the assistants and front desk people. Good call on her part – turns out they had missed something: abnormally large white blood cell count (eosinophils).
They had kept telling me everything was normal when I insisted it was not – even at my post-op appointment on January 5. HAH. This did NOT help my emotional state that day.
I quickly made an appointment with my local doctor as instructed by Dr. Wang. I was able to score an appointment for the next day, but less than 24 hours was even too long for me to wait at that point.

That day, I took 1mg Ativan, but still refused to take pain meds, even though my emotional meltdown set off instant cramps and fatigue. I can’t say enough how much stress and anxiety bring on and worsen endometriosis pain. Even though I have relaxation techniques and books and podcasts and MP3s on stress management, I still struggle with becoming master of my emotions.
Here’s a good article from an author I trust.

Complaints for Day 25:
My belly button still hurts.

Firsts for Day 25:
Did 10 slow stomach crunches and 10 sit-ups before bedtime:
Lying on my back, I put my legs in the air, bent at the knee. My hands rested on the sides of my body. I held the pose for as long as I could, and then I slowly extended my legs forward and back again, 10 times.

Sit-ups: I laid on my back with my legs bent, feet flat on the floor. I rested my hands on my thighs and sat up slowly until my hands touched my knees. Note: do not sit all the way up.

lower-abdominal-workout-sit_ups-800x800

1236787281185-w99ou24oq0pn-500-90-500-70

Mental state, part 2

I still have not begun taking the Lamictal. Still too afraid of experiencing the possible side effects.

I had an appointment this past Monday with my psychologist. This is the same psychologist who, by either the first or second visit with her, decided that I have Bipolar disorder and need to be medicated ASAP.

By the fourth visit, I asked why she kept pushing for me to take meds, when she is a psychologist, not a psychiatrist. She claims she went into the wrong field and SHOULD be in psychiatry, as she knows enough about meds.

Uh-huh. I see.

Anyway, I saw the psychologist this past Monday, as I said. On this particular day, I had awakened to a 99.8°F temperature, but still went in to work. I experienced low uterine pain and low back pain for much of the day, and generally was highly emotional all day. By the time I got to my shrink appointment, it’s what we ended up talking about was the fact that I was PMSing and in a bit of pain.

The psychologist – I haven’t mentioned this before – but there are two things I really, really dislike about her. One, she flutters her eyelids and often goes on for entire paragraphs worth of talk with her eyes closed and/or fluttering. Two, she rambles and doesn’t let me get a word in edge-wise, often talking about something meaningless to my situation, or trying to relate something to my situation that doesn’t relate at all. I finally have to say STOP! loudly to get her attention, so that I can TELL her that what she is saying holds no meaning for me whatsoever.
The last example of the meaningless is when she told me for the third time that she knows for a FACT that *I* will not experience side effects on Lamictal, because she has first-hand experience, seeing her daughter on Lamictal, and she was FINE.

Okay, number one, it’s SECOND-HAND EXPERIENCE, because it’s your daughter, not you. And number two, your daughter does not have endometriosis. She has a seizure disorder. So you cannot tell me for a FACT that *I* will not experience any bad side effects.

She of course wrote me off when I boldly spoke up.

So there we were, talking about my PMS and cramping and my ongoing major depression, when she mentioned that I try to get on disability. I told her I tried that already and was rejected by both federal and state.
This woman sat there and tried to convince me to play the state and federal governments! She told me to miss more work so that I *can* qualify for disability! I told her flat out that I will NOT play sick JUST to get disability pay, because in playing sick, I commit to routine check-ups and drive-bys from the state and federal government, who will make sure that I am in fact, truly disabled.
When they photograph me at the grocery store with a basket on one arm, or photograph me driving in my car, or photograph me going to the gym or whatever – I will lose my benefits. Then what? I have a stain on my record as someone who was a fraud. I may be fined or worse. Then I have to try to get a job again.

The disability insurance people do ‘spy’ and take photos – it is part of their job. I worked for an insurance company which provided disability benefits to auto workers. I had to be the one to make the pay cut-off phone calls after people were caught on film doing things they said they could not do. It’s just part of the job in that industry.

So I told the psychologist that going down that road meant playing sick ALL THE TIME, and I will not do that. I told her I have my precious 7-14 days each month where I am active and can get shit done, and I’m not going to give that up just to collect some disability pay.
She kept making a point to stress how much pain and suffering I’m in, and how SHE doesn’t like to see me in so much pain, and wouldn’t it just HELP if I went on disability?

I told her NO, it WOULDN’T help. I told her about the joy I get from the children at work. I told her about how much I love to be able to get on my bike to go to work or run errands. I told her I like roller skating and going dancing – when I am able to do these things, I DO them. I told her that if she takes these things away, I WILL go ahead and kill myself.

When I left the psychology appointment, I was MAD. I went home, changed into my workout clothes, and went to the gym for an hour, despite the low-grade temperature and the uterine pain and low back pain.
Then I walked a half mile to Walgreens and back again to pick up my refill of Lorazepam. I popped two on the walk back home. When I got home, my husband was home from work. I collapsed on the couch in tears, and told him about the visit to the shrink and how I’d rebelled by all the exercise I did. I said the exercise made me feel better, but overall I was more depressed because of the psychologist.

My husband was hopping mad at this woman, of course. He held me and sided with my every reason for not wanting to go on disability. I love my husband.

I stewed over the shrink all of Tuesday, and then on Wednesday (yesterday), I was feeling outright rage. I called on my lunch break and left a message for her.
She called me back and left two voicemails. I could not answer the phone because I was in a meeting with my school director, who wants to place me at the other school location. I’ll go more into detail about that later on, if the move happens.

When I finally had time to listen to the voicemails, the psychologist sounded shaky and emotional, and repeated herself no less than four times about how she never meant for me to go on permanent disability – she was only referring to my post-op, and going on temporary disability.

I called her back or she called me back last night, and I told her in so many words she was full of shit. I brought up my pet peeves with her, and rehashed how the convo in session had gone. She apologised again, and said she’d had an excruciating headache for two days, and should not have come to work that day. I rolled my eyes. Excuses, excuses.
At the end of the phone call, we agreed to meet again next week to give it another chance. But actually, a day after my phone conversation with her, I’m still feeling really pissed off.

These psychologists – they’re more mentally ill than I am! I swear! I’ve not had one yet who I can endorse!!!

I’ve made up my mind. The psychologist is fired.

This leads me to the psychiatrist. I saw her a total of three times; once in January, once in February, and once in September. In-between that time, she was on maternity leave, and then I’d forgotten to reschedule with her. So the third visit counts as #1 all over again. A do-over as it were, since much had changed since February. On that first re-visit, she reviewed my history, and got caught up with my new history, including the cannabidiol incident (documented here and here). The psychiatrist told me there are several documented cases, including some of her own patients, who experienced depersonalisation and bi-polar-like symptoms after using marijuana or any form of cannabis. She assured me I am not crazy or alone in this.

And yet she wanted to prescribe Abilify, which is an anti-psychotic, often prescribed to schizophrenics and people with Bipolar I.

I asked her if she feels I am Bipolar. She said she’s not sure, based upon the fact that cannabis was involved. So I asked why she wanted me on Abilify. She said I should be on some kind of antipsychotic or mood stabiliser to get back to a baseline.

Up til this point, I had told myself I needed mood stabilisers. Now that the psychiatrist, on the first visit, wanted to give me antipsychotic medication, I began to get The Fear.

I told her I’d research the side effects and get back to her.

I called her a few days later and said no to Abilify and asked what else she could recommend.
Lamictal, the same thing my psychologist had suggested, was mentioned. So I said yes, and the prescription was filled.

I went so far as to cut all the pills in half as instructed.

But I haven’t taken one pill, yet.

I have The Fear.

It’s the fear of exactly what happened to me on Yasmin happening all over again (read more about that descent here).

I just don’t want to take another chance. I am convinced that the major depression and bipolar like tendencies I’ve had since the end of July are *because* of a medication (cannabidiol), and therefore I am convinced that taking *more* psychotropic medication is NOT the answer.

Let me work through this. Specifically, let me be active and work out the anxiety and the inner and outer restlessness.

I have been to the gym only 9 times this year. I have bicycled to and from work 17 times this year.

Ten of those 17 times have been within the current school year (which began August 31, 2010).

It is my personal expert medical opinion that I need to up the gym time. I need to become an exercise fanatic. THAT will manage my mental imbalance.

Give me some time to see this through.

If it doesn’t solve the issue, I’ll stare at the bottle of Lamictal again.

The mental state of Steph

I should start noting my mental state here. I’ve been seeing a psychologist, and I saw a psychiatrist on September 14. Both think I may be bi-polar, but they do not agree on which type of bi-polar I am.

The psychiatrist gave me a prescription for abilify, but I refused to take it. I asked for and got Lamictal, instead. I still haven’t taken it, though. I am afraid of more side effects. I’m done with more and more mental stuff going wrong with me.

I’ll restate what I said in my previous entry –
Because I’ve not really enjoyed a pain-free or sick-free or allergy-reaction-free day in about seven weeks, I have hit my breaking point emotionally.

I’ve already been wrestling with what I call ‘dangerous depression’ since the end of July.

Well, it’s getting louder in the head, and more externally vocalised.

I went with my husband to a Victorian-era home showing that happens every year in our city. There were eight homes on the bill to walk through. I did not enjoy it this year. It was painful to move. My low back pain crept back in to flare with the trapped nerve in the shoulder, every time I had to climb stairs, or really move at all. And I was still in pain from one visit to the gym last Thursday.

I was super depressed.

I guess it doesn’t help that I’ve been on Soma (muscle relaxer) for two weeks, and I know from experience that it adds to my depression. I have not had a dose of it today and will refrain from taking any more of it.

After the home showing, there was the annual parking lot sale over at the famous tiki bar in town, so we went on over.
I immediately went for the booze. First time in 51 days that I got absolutely full on drunk. My husband had gone off to his sacred game night, leaving me in the company of friends still at the tiki bar. I was still going when his game session got out around 10pm. He picked me up and took my sorry ass home. Thankfully, no tears or puke or hangover this time. I drank lots and lots of water, thanks to a very attentive bartender, and was a good girl and drank lots of water when I got home, and took vitamins and advil.

I remain dangerously depressed.

Today at work, while rocking a child at naptime, I got stabbing right side ovarian pain that lasted for about five minutes. It went away until now. I’m just sitting on the couch, typing, and the ovary is pulsing a low stabbing pain. Today is Day 10 of the new cycle, so I guess it’s mittelschmerz, which usually happens at Day 8 of the cycle, but has been off by a day or three for a few months, sometimes not happening at all. I blame it on the endometriomas on both ovaries.

I bicycled home from work in 95°F heat – thankfully the ovary did not stab me on the ride home.
But I am wiped out after spending some time in the outdoors at work today. Ugh.

So this mental health thing. The meds. I’m so tired of meds. Today I started a detox diet – the one I tried to start back in July or August and didn’t keep up with. So I started it over today. Lots of supplemental pills to take with every meal.
And then either tonight or sometime this week, I might begin taking the Lamictal. I’m terrified of it. Read all the horrific side effects here. If you think that looks bad, read the side effects for Abilify, which is what the psychologist originally wanted me on and I said no way.

Now, let me tell you again what I’ve said before. I have been going through what I call dangerous depression since the end of July, 2010, because of all my pain conditions and reactions to medications.

This is also known as, yes I will spell it out and face up to it: suicidal ideation.

I have wrestled with suicidal ideation for much of my life, so this is nothing new. The frequency is what is worrying me.

But look here, if I take Lamictal or Abilify, the warning is basically the same:

Patients, their caregivers, and families should be counseled that AEDs, including LAMICTAL, may increase the risk of suicidal thoughts and behavior and should be advised of the need to be alert for the emergence or worsening of symptoms of depression, any unusual changes in mood or behavior, or the emergence of suicidal thoughts, behavior, or thoughts about self-harm. Behaviors of concern should be reported immediately to healthcare providers.

Why would I want to take a drug that will make me MORE suicidal than I already am?

I already went down that road once, with SSRIs (Paxil), back in 2000.

Honestly, I probably won’t take the medication. I’ll get my diagnosis officially recorded as bi-polar something and then I’ll manage it myself. I’ve lived this long…

Pain, fun, allergic reactions and trapped nerves

I tried to go back to work on Thursday, September 16, but the Last Gasp happeed two hours into my workday and so I took a whole Tylenol 3 and came home. Thankfully, by Thursday night, that was the end of the major pain and bleeding.

I went to work on Friday and was able to complete a full day of work – the first all week. I never need this much time off this job for the pain, which tells me either the endo really is getting worse, or I’m becoming a wuss to the pain after enduring it for 25 years. I worked a total of 10 hours that week. Ugh.

Friday was not only my first day back to work, it was also my birthday. After work, my husband took me to a very nice sushi dinner, where I stuffed myself until it hurt, heh. I don’t think we went out that night – I was still too tired from just having spent a week bedridden. That’s how it goes.

Saturday, September 18, set the clock! Go out and have fun til the next endometriosis attack! We went to a nightclub down in Menlo Park to support the scene down there. I didn’t really have a good time, but we did get a nice picture taken of us:

steph_badger_clubsurgery09182010_bygeoffreysmith

 

On Sunday, we joined up with a fellow birthday girl for her annual Ice Cream Crawl, which took place in Oakland and in Berkeley. Around stop #6, I decided to eat sorbet instead of ice cream, which had given me a tummy ache, no matter how much lactaid I had ingested. The sorbet was raspberry chocolate flavour. To my dismay, it was full of raspberry seeds. I shared the sorbet with people in our group, and we all winced at how seedy the sorbet was.

Within twenty minutes, my throat began to get dry, then swell up.
Great.

So now I’m allergic to raspberry seeds? Wonderful. It’s in the same salicylate family with peach skins, grape skins, apple skins, apricots – all the stuff that also hates me either orally or intestinally.

I took a children’s benadryl but it did nothing, so I took a adult dose of benadryl on top of it – 36mg total. This of course made me a zombie, and so my husband ended our Ice Cream Crawl and took us home for the day. The swelling did not abate all day and all night, but I refused to go to E.R., because the last time I did, they told me they could not visualise the swelling, so it must just be me having a panic attack. To which I’d replied, “I know what a fucking panic attack feels like, and this is not it.”

I get the same throat swelling when I eat eel. Actually it’s the uvula that swells up. Same thing happened with the raspberry seeds, only not as horrible as it does with eel, thank [insert deity here].

I refused to go to E.R. because I cannot afford further debt with them – still haven’t paid off the June debt I incurred with another oral allergy attack. And I refused to use my epi-pen because you HAVE to go to E.R. if you use it. So I was kinda stuck. I knew I wasn’t gonna die, or at least I hoped I wouldn’t die choking on my tongue.

I made it through the night and the swelling went down by morning.

What a sucky end to my birthday weekend, though.

All through this whole time, I was still dealing with having to be on muscle relaxers for the trapped nerve in my shoulder. So I was quite the grump.

Monday, September 20, while bicycling to my psychology appointment after work, I experienced pulling, stabbing pain in my right ovary. This is not a good thing to be going through while pedaling. The pain lasted for several minutes after I climbed the two flights of stairs to my shrink’s office. Ugh.
The pain went away, though. Thankfully. But I was not even a full three days into my new cycle when that pain hit. The endometrioma is doing bad things to me. :(

I was able to bicycle to work for most of last week. I even made it to the gym on Thursday, September 23, for the first time in 146 days. I did the 2lb hand weight workout exercises as prescribed by my trainer, and then I did 14 minutes on the elliptical machine.

The pain from the workout did not hit until Saturday, just in time to help my friends move in 85°F heat. I designated myself cleaning lady that day, because on top of the workout pain, I slept wrong again and the trapped nerve issue in the neck/shoulder flared up real bad again.

On top of all of this, I’ve been bruising the hell out of my legs by running into the coffee table repeatedly, as well as the child-sized furniture at work. I have bumps and bruises and scrapes. I think the clumsiness is due to the muscle relaxers.

Because I’ve not really enjoyed a pain-free or sick-free or allergy-reaction-free day in about seven weeks, I have hit my breaking point emotionally.

It’s not fair that I can’t enjoy my 11 – 20 days between endometriosis pain cycles being totally free of any other sickness or pain.

It’s always something. :(

Today I am feeling bitter.

My friend Jeanne over at Chronic Healing wrote an article that I simply must describe here.

Her article, titled “Endometriosis Patients Viewed As Cash Cows?“, addresses a rhetorical question that’s been brewing in my own mind for quite some time.

I am subscribed to a number of news alerts, medical journals and publications (as is my friend Jeanne). Every so often, I’ll see something like, “Newly published market report on Hormonal Contraceptives – Since the 1960s, hormonal contraceptives have been widely used as effective birth control in the developed world. Although they are mainly used to prevent pregnancies, they can be used for treating other conditions such as acne, endometriosis, and polycystic ovarian syndrome. In 2008, the hormonal contraceptives market was worth $6.2 billion across the seven major pharmaceutical countries.” (Nov. 27, 2009)… and I’ll think to myself, “Hm! Me being sick sure does make a lot of money for some people! Amazing how I’m still not well, and how these companies are booming!” But then I let it go without bitching about it on my main Living With Endo site.

The latest such news item was titled, “Global Endometriosis Market to Grow to $1.1 billion by 2017 Says Latest Report“, and Jeanne checked her news alerts before I did, and had something to say about it:

Yet another “endometriosis pipeline assessment & market forecast” has been released. Who is looking out for the endometriosis patients in this world of people trying to make money off the backs of endometriosis patients? With 89 million endometriosis patients worldwide, I wish I knew of an endometriosis organization that had my back. Sadly, I don’t feel there is an organization that fits this description.

I took the discussion to my facebook page, where I had an exchange with my friend D.

D: _everyone_ who has a chronic illness is seen by big pharma as a revenue stream. I know this for a horrible fact.

Steph: yes, it is true. Jeanne touched on that in her article, as she has multiple chronic illnesses.
There’s just this wave of people cheering on endo organisations and doctors, without really doing background checks so to speak, and so her article is a wake-up call for people.

D: to expand, I can’t speak to the subject of nonprofit interaction with patients and profit, but from where I’m sitting (…the corporate “for profit” managed care industry…) there is a definite emphasis on “managed care” and specifically not on curing anything. The people running these companies would never outright SAY it, but they have a vested interest in making sure people stay sick, and stay dependent. Cures for ANY of the big life-changing-but-manageable illnesses (Diabetes, Endo, take your pick, theres lots more) would instantly dissolve multibillion dollar businesses PER DISEASE. You can be damn sure the companies running those businesses don’t want that to happen.

I’m not usually one for tinfoil hats, but in this instance, it’s really really hard not to wear one.

D: The magic words are “cure” vs. “managed care”. If you see “managed care” the likelihood is that money comes before wellness.

Of course, if you see “cure” first, then it’s just as likely they won’t have a dime to their names to do the research with…yay American medecine.

Steph: this is why whenever I see anything for my illness and my father-in-law’s illness advertised or discussed from A Certain Corporation, I roll my eyes. I know for damned sure they don’t give a rat’s ass about us getting better.

In fact, the stuff touted for endo care from A Certain Corporation, as well as any private, public, for profit or not for profit joint at this point so far has only been full of people who lie, cheat and steal at our expense, with drugs that only hurt us worse, not help us.

This INCLUDES the biotech firms doing DNA studies on us – they SAY they are doing this for a cure, but you read their quarterly earnings reports or studies published in medical journals (I’m subscribed to several) and all you see is language indicating they want to be FIRST to use the DNA studies to create a new DRUG THERAPY, not a f***ing cure.

There’s two endo orgs slinging mud as we speak, because one got all pissy that the other was first in publishing data. So the other went and did a smear campaign on the integrity of the data. It’s ugly business being so charitable towards us poor, helpless little females with endometriosis.

Then there’s the doctors, who sit on the technical advisory boards for several competing organisations and biotech firms at once.
Hello, conflict of interest? Hello lining your pockets, much?

Lastly, there’s the butchers, making money off of maiming us further (*cough*nezhat *choke*metzger *ahem*there’s more).

It’s slow work, but I’ve got a database going on ALL of these choads.

You are most certainly justified in the tinfoil hat.

Be sure to check out Jeanne’s article, titled “Endometriosis Patients Viewed As Cash Cows?

If I wasn’t already bitter enough, I went searching for images of a retroverted uterus, because I’m wondering if half the clotting that happens during menstruation is due to the retroverted state of my uterus. While searching the interwebs, I happened across The Household Physician website, which shows the following treatment for a retroverted uterus:
howtoreplacefallenwomb

Click to enlarge, and note how the caption specifically says that AIR will hold the uterus in place until a pessary can be placed.
The website of course offered no dating of the material which it espouses, so I did some digging and found the original work over on Google Books, by the same title; The Household Physician

This book was published in 1895. It is important to note that 115 years later, pessaries are *still* being used to “treat” a retroverted uterus.

I guess I should be thankful that leeches are no longer being used.

leeches-gyn-treatment

 
I’m going to ask if it is possible for my surgeon to surgically correct my retroverted uterus during the laparoscopy.

But honestly, you’d think that in 115 years, the medical establishment would figure out how to help instead of torture women. We remain second class citizens (or worse in some parts of the world) as far as health care goes.

And that is my bitter rant today.