I Will Not Suffer In Silence

I went to bed around 2am and slept til 11am today, but suffered for it. I’ve only been able to sleep a maximum of 8 hours before the trunk of my body really starts to hurt. I try to roll over on my left side, but it’s painful after a few minutes. It’s still not possible to lay on my right side.

My husband and I lolled about the house and ate breakfast at noon. We waited to hear back from friends who might want to go to the movies with us. It didn’t work out for friends to join us, so we went on our own to see TRON: Legacy. It was the first time I chanced going to the movies post-op. It worked out - the chairs were as uncomfortable as they usually are for me, but all the sitting did not aggravate my tender belly button further than it has already been.
TRON by the way was pretty neat. I had no great expectations for the dialogue or plot, so I sat back and enjoyed the pretty - in 3D even.

When we got home, I had just enough time to clean up a bit before friends were to arrive, because we were going to do even more sitting and watching of movies. My husband had to go feed and water a friend’s cats, so I cleaned up papers and small boxes and crap from the living room, and got out the vacuum. I had not attempted vacuuming until now, so I gave it a whirl. It was a bit tough to maneuver the vacuum. I had to squat down and hunch forward a bit, and really use my arm muscles to push the damned thing around. This is an upright HEPA vacuum - it’s not like some big old fashioned monstrosity, and yet it was nearly too much for me to handle at 15 days post-op. But I did it.

Shortly afterward, our friends began arriving. We ordered Indian food, my husband returned home right after the food arrived, and we started the movie of the night: The Abyss.
All of us have seen it. Some of us (like myself) have not seen it in many years. The dialogue is hilarious but the imagery is still pretty cool, and all that underwater filming - wow. Some of us had to remember not to hold our breath (including me).

Shortly after the movie began, I started having pelvic cramps. I went to the bathroom and discovered thick mucous and dirty bloody discharge. It smelled foul. The discharge is normal but the foul smell set off alarm bells for me. I took 600mg ibuprofen and put a heating pad on my pelvis, then on my back, and finished watching the movie.

Diet today consisted of gluten-free pancakes and decaf coffee at breakfast time, along with a Boost drink. I had popcorn and some white chocolate at the movie theatre, and for dinner, I ate Saag Paneer with some rice. I drank some sparkling apple juice, and then some blood orange soda. I’ve not been taking in enough water for the past two days.

After The Abyss finished and we saw our friends off, I looked back through my diary for “coffee ground” debris and found that 61 days post-op, that’s when the inner scabs sloughed off and came out. After reading that diary entry, my memory of the debris came back, and it did not match what I saw tonight. But I don’t see any of my old diary entries detailing mucous discharge or a foul smell post-op.

I told my husband about it and took my temperature. It’s normal. I’m not feeling dizzy or nauseous, and I do not have a headache. So we’ll see what the rest of the night and into the morning brings.

Firsts for Day 15 post-op:

• Vacuumed the house.
• I am walking at a faster pace each day, but still not back to my normal.

Limitations:

• Stair climbing is still painful on the pelvis and knees, though I did make a point to climb up and down the stairs twice again today.
• Laying on my sides is still painful.
• Laying on my stomach is still not an option for me just yet.
• Haven’t tried driving a car, still feel I’m not ready.

Complications:

• Discharge and foul odor.
• I slipped coming down the stairs to the house we live in, because it had just started sprinkling outside again. I caught myself, but I worried that I might have stretched or pulled something a bit too much inside.

Thursday, December 30, 2010

Around 1am, I asked my husband if he’d like to go for a late-night stroll with me, since we were both up. He said yes, and off we went. We walked the same path I’d walked the other day, only this time, I was not on any pain medication. I had taken Ibuprofen only once on December 28, and twice on December 29. It was the wee hours of December 30 when I wrote this.

Along with the half-mile loop, we added a second round-the-block loop, which came out to a whole mile when I looked it up on Google maps. Go me! Last time I walked outside, my lower back hurt quite a lot. This time, it was the knees and buttocks that hurt the most. Even the calves hurt a bit.

I’m going to bed now, but when I wake, my goal for the day will be to climb and down the stairs attached to the front of the split Victorian I live in.

…

I had gone to bed close to 2am and woke up 8 and a half hours later with stinging pain in the abdomen. Urinating didn’t help. I think it is just that I still can’t lay around for that long - my body needs to be moved around. Also, I tried sleeping on my right side that morning and it was too painful to relax all the connective tissue and muscles to successfully fall back to sleep that way.

I drank Boost first thing in the morning and had diarrhea right after. Hmmm.

I had no diarrhea for the rest of the day but had one more instance of loose stool - it was solid but you know what I mean.

Firsts for Day 13:

• I wore underwear for the first time (I’d been wearing the hospital “fishnet” underwear this whole time because even my own undies were too constricting on the incision points).
• I walked up and down the stairs twice!
• I stayed on my feet for much of the day.
• I had a lot of energy all day, only waning once, but I did not require a nap.
• I was able to sneeze at full force without hurting.

I medicated before stair climbing - I took 400mg Ibuprofen. After I was half way up the staircase the second time, the pelvic pain began. Although I have to say the sharpest pain was actually in my knees, because I’d been sitting or laying or reclining for the past 13 days. My knees are usually painful and crunchy, but on Day 13 they hurt more than usual.
Still, I made it back down the stairs and took some more Ibuprofen (400mg).

The rest of the day saw me active as well, even though I had bouts with the pelvic pain and had continued knee pain all day.

The rain had stopped and the sun was out, but it was cold and windy all day. Still, I walked to the corner store and back, and my husband drove me to three more stores that day, looking for something for a gift to my co-workers.

In the evening, my husband stepped out for a band meeting, and I had the place to myself. I turned out all the lights, fired up the faery lights and some candles, and put on my favourite music. I had quite a cheerful time of it, just hanging out online with friends, chatting with my chosen sister, and filing some paperwork.

When my husband got home, we had an interesting text session with a drunken friend in Seattle, which turned into a hilarious speaker phone call. I accused our friend of trying to pop my glue plugs, I was laughing so hard. We totally captured the audio and plan to embarrass him with it when next we see him.

Wednesday, December 29, 2010

I had diarrhea first thing in the morning, twice. I experienced shooting pains in the abdomen right after.

It calmed down, so I ate some rice chex and some chicken broth. The cramps started up again and I had another round of diarrhea.

This continued a couple more times, and I was freezing cold, despite the house being 71°F.

I took a nap on the couch, wrapped in a blanket, then got up and drank some Boost. I had another round of diarrhea and stomach cramping.

I was drinking water to stay hydrated, but I did not have any further water because we stepped out to run an errand. The errand took over an hour, and about half way through, I had to squeeze my butt cheeks together to avoid crapping myself. When we got home, I had immense diarrhea again.

I have had a headache all day, worsening after I ate gluten-free mac ‘n cheese for a late lunch.

But the good news is that all my blood work came back normal. It was difficult to feel relieved or convinced by that news, given how awful I felt.

I took another nap for over an hour, again bundled up in a blanket on the couch with the heating pad and the heater fan on me. I was still cold, so I cocooned myself. My cat joined me as he often does when I cocoon myself. He laid on my belly, but did not disturb my incisions, and we both slept.

When I woke from my nap, I had to use the bathroom, and was happy that I didn’t have a bowel movement or diarrhea. I guess it had settled down. I was hungry again so I drank another Boost and ate some jello.

The diarrhea has not been back for the rest of the day.

Reading back through my post-op recovery from 2007, I had TMJ issues resurface from all the meds I was on. It didn’t help with the migraines, of course. This time, I have been having TMJ issues since about September. At first, I blamed it on all the stress of school. Now I wonder if it’s due to the Smart Meters that were installed sometime in August or September. Those things are nothing but trouble, and I am EMF sensitive.

I was still having trouble with solid foods at Day 9 last time. By Day 11, I still had a sore throat and was still trying to heal up the scraped gums from the anesthesia blade. This time around, the solid foods thing is still an issue, even at Day 12, but the sore throat went away by about Day 3 or Day 4.

Firsts for Day 12:

• I was able to slowly march around the house to get some leg lift exercise.
• I was able to swing my arms and do slow side twists, but it hurt after about a minute.
• I was able to wear a bra and sweatpants all day.
• I can plop down onto the couch, the car seat or the bed.

I also accomplished some more walking, and I have been sleeping flat for the past three days.

Oh, and I have not had any Tylenol 3 since December 27 because of the fear of liver problems. I’m on Ibuprofen only.

Tuesday, December 28, 2010

Woke up that morning with the intent of going to the social security office, because both of us have name change stuff we’ve been meaning to do. I also wanted to call my doctor and see if I could get an appointment today for liver blood work, because I was still freaked out about the pink hue in my fingernails. I called UCSF and left a message. Then I called the local doctor’s office. They sounded condescending to me on the phone. “What, you think there’s a medication issue going on?” Ummm YES I’ve eaten over 80 Tylenol 3 since being in hospital on December 17, and I had an issue with high liver enzymes before, so YES I think there’s a fracking medication issue going on! I’m afraid of irreversible liver damage thankyouverymuch!

The local doctor had an appointment for me at 4:15pm. I then talked with my husband, who said he thought going to UCSF would be better, since they already have all my most recent blood work and surgery records. When they called back, they had a sooner appointment, so we took that.

It didn’t leave us time to go to the social security office after all, but I told my husband we could do that tomorrow, and that his priority is to me and making sure that I am well before dealing with any of his stuff. Yeah, he was still in the dog house.

The bumps in the road during the car ride did not bother me immediately and intensely the way they had when I was driven home from the hospital and like when we went out a few days ago. Rather, the torture was delayed. Half way to UCSF, I experienced stinging sharp pain under the diaphragm. The pain went away once we were out of the car and settled at the doctor’s appointment. The pain returned on the ride home, and returned again when we drove to a friend’s house that evening.

My exercise for the day came in the form of walking to the car, walking from the parking garage to the hospital and back, and walking back to the house.

I’d like to also note that while we were at the UCSF Women’s Center, I also walked across the street to the main hospital, where I delivered a Thank You card to Nurse Hannah. She wasn’t there, and the wing I had stayed in (4 East) was shut down and being painted, so I delivered the card to the other side of the wing (ICU).

Firsts for Day 11:

• Able to put on and tie my own shoes (have been wearing slip-ons til today)
• Able to wear a bra for part of the day
• Able to wear tights for part of the day
• Able to jump (we have ants entering at the top of the door frame. I was spraying the outside of the door frame with Bugs-R-Done spray, but wasn’t quite reaching the top. Before I knew what I was doing, I had jumped to spray. When I landed back on my feet, my eyes were wide, and I stood there in shock for a second. Then I thought, “Holy crap! I didn’t die!”

I was so excited by jumping that I jumped again. I giggled. And then I had to take a nap, because that had seriously worn me out!
I napped for about an hour.

Because of my fear of liver damage, I took no medication that morning or afternoon - not until I had gotten the blood work done. I gave three vials of blood that day; one for liver, one for kidney and one for blood count.

When I woke up from my nap, my husband informed me that it was time to head over to a friend’s house. She was going to take us to dinner in exchange for my husband watching her cats this coming weekend. We had Thai that night.

The weather had been rainy all day (winter in California), and worsened by evening to a drenching downpour. This made my life a little more miserable because of how slow I am in getting into and out of cars during recovery.

I had diarrhea as soon as we got to our friend’s house, and twice more as soon as I got home.

Nausea and stomach pain followed, lasting through bedtime. This was the second time since surgery that I had intestinal issues after eating Thai.
That night, I had fitful sleep. I was hot and cold all night - sometimes drip-sweating. This was about the third night in a row where I went to bed freezing and woke up sweating to death.

Monday, December 27, 2010

My husband was in the dog house as he recovered from a severe hangover and a morning of puking his guts out, amongst other bad behaviour. I was severe in my verbal punishment, telling him he failed me as a caregiver, that I needed him to remain level-headed like he promised me he would be, because I’ve been scarred before by caregivers letting me down (my boyfriend promised my parents he would take care of me after a near-death head-on auto accident back in 1994, and then he left me alone for days while he hung out with friends. I had to crawl to the kitchen to get food, with a massive head injury and whiplash. I will never forgive him and in fact I sued him as an uninsured driver in that accident). So anyway, I’m scarred physically and emotionally, and it took many years to build up trust. I boasted to my parents how well my husband had been caring for me to this point. And then this. Oh my gods I was so mad.

On to brighter things though - on Day 10 post-op, I noticed that I was able to lay on my back, my right side, and my left side with effort and controlled breathing to settle. Although the right side is the hardest to lay on. I discovered through having to clean up my husband’s messes that I was able to sit on my knees. I was able to more easily swing my legs off the couch or the bed. I was able to more easily climb into bed.
All of this is only one day later than my last recovery, wherein I could lay on my sides by Day 9.

I have to keep reminding myself that this time is different. I had surgery a week before my period, not after. I have four incisions this time, not three. They bumped into the thin tissue outside of my bowel, bruising it badly, upon entering my body with the equipment.

The headache that started at 8pm the previous night still with me at 2pm the next day. It finally went away by 4pm. This, despite lowering the dose of Tylenol 3.

All day, I experienced cramps, and the bleeding had ramped up again. This was Day 10 of post-op and Day 5 of my menstrual cycle. I was still passing a lot of big clots. I cried from the pain and had to take a whole Tylenol 3 around noon. I held the heating pad to my pelvis for the first time since surgery, the pain was so bad. It felt like white hot burning in the center of the uterus, alternating on the ovaries.

Because I am determined to keep the body moving as doctors instructed, I went for a walk around the block. The weather had cleared again, and I wanted to take advantage. This is a half-mile round trip walk, and I did it! I walked at a shuffle in a Tylenol 3 induced haze, but I did it!

Because I was still constipated, I took two doses of miralax that day, and finally had a bowel movement at 10:24pm. It was a mix of solid and liquid.

I forgot to mention that around Day 4 or Day 5, I had noticed that my fingernail tips were turning pink hue. My fingernail tips have for years been so white that it looks like I have a French manicure, so when I looked down at my nails one day and saw that they matched my skin tone, it freaked me out.
I finally remembered to google it, right before bed…and found this page, which says, “White fingernails with pink near the tops are a sign of cirrhosis of the liver.”

This freaked me out further and nearly led to a panic attack. I went to bed uneasy that night.

The last time I blogged was on November 9. The pain abated by November 11, and so I decided again to try bicycing to work. I seemed to be okay, so I pedaled to work again on November 12, despite the trapped nerve resurfacing overnight once again from all the stress I’m under. Speaking of stress, I began taking Ativan again - on November 11. :(

On November 13, I participated in my friend’s wedding. It was beautiful. :)

The grooms

The cake cutting!

My husband

Me

The only thing though, we all drank for about 12 hours that day. I had a total of 3 glasses of wine and two and a third hard alcoholic drinks in the course of those 12 hours. Not bad, but then again I shouldn’t be drinking at all with autoimmune disease. Hell, I got more drunk the night before, at the rehearsal dinner, heh. I think I drank 2/3 a bottle of wine that night…

During the wee hours of Sunday morning, a virus within me had activated and let loose on my maxillary sinuses. It felt like my runny nose coated my pillow. Ugh. I’ve been sneezing and blowing my nose ever since.

I tried resuming bicycling to work Monday and Tuesday this week, but with the virus making me excruciatingly tired (like, wanting to be in bed by 8pm), I decided to not bicycle to work today.

Because of the virus, I have renewed heightened sensitivity to dust, mold, perfumes and chemicals in general. This of course did not stop me from getting super PMS-tastic last night and using Tilex diluted in hot water to scrub moldy window sills - without a mask. WTF!!

Also, the biggest WTF right now is Mittelschmerz. It hit like clockwork on Day 8 of the new cycle - yesterday the 16th. And ever since yesterday, I’ve been trying to eat all the chocolate on the planet. Tonight, I wanted alcohol, and I’ve been imbibing on liquor in the house. The boozing is in part to the stress I’m under at work, and in part due to nightmares I’ve had for two nights straight.

This upper respiratory tract infection is not helping with my stress level. I know I shouldn’t be drinking, especially with a virus going on, and yet I have no control over my cravings and wants right now.

I’m experiencing mid-cycle pain, PMSing, and my period is already due by next Saturday, even though just last week, I was just coming off my period. This so-called 25 day cycle is for the birds.

So I just wanted to let you know where it’s at - I’m PMSing, chocolate-gorging, stressed out, drug-addled on Ativan and Benadryl, and totally having a pity party over the Blue Moon Menstrual Cycle this month.

Yeah, pity me. Wah. Boo hoo.

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.

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:

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. :(

The right side ovarian pain has been intermittent and mild throughout today as well.
This morning I had my follow-up appointment with Dr. Giudice, my ‘new’ GYN. She had a new nurse who wanted to make sure she had my history correct, so we went over the notes. I love how the nurses and doctors prepare themselves before speaking with the patients, it’s pretty awesome. Even if they only just read my history a few minutes before entering the room, they do a great job of putting off like they’d spent lunch hour or the night before poring over my file. It makes me feel respected and valued - imagine that! So far, Dr. Giudice’s office is three and a half to four star in my book (Not five star? Communication issues sometimes are the problem).

This morning we caught up to the present pain, and the nurse typed up everything for Dr. Giudice:

“38 year old with history of endometriosis and chronic pelvic pain presents for follow-up. worried about growth of endometrioma. increasing pain on Right ovary intermittent, stabbing. walking, heating pad not work. severe dysmenorrhea is stable, but patient reports worsening debilitating pain 1 week before her period which is new (similar to pre-surgery 2007). tylenol #3 and ibuprofen not work. during menses - bedridden, around-the-clock (ATC) meds. pain currently Right side, but can be on both sides.

2 visits with UCSF pain management psychologist - insurance stopped covering. sees psychiatrist (new appt next week), psychologist, alexander technique pain management (less movement)

4/21/10 - patient referred for pelvic MRI to rule out adenomyosis. Referrals for chronic pain clinic and pelvic physical therapy were given. She declined Mirena IUD, Lupron, presacral neurectomy.

6/23/10 - patient returned to review MRI. MRI revealed 1.4cm Left ovary endometrioma vs. hemorrhagic cyst, no evidence of adenomyosis. patient declined GABA cream hormonal treatment, or antidepressants. Patient is interested in surgical resection of endometriosis. The decision was made to defer surgical intervention.

Since then, she has called the clinic several times regarding nausea (7/2), passage of thin grey tissue during menses (7/26), and a heavier than usual menses (8/20). Her pain is currently controlled with Tylenol with codeine and Ibuprofen.”

That’s a pretty good history - I didn’t expect them to have preserved notes on my calls to their office! So cool. The only thing I take issue with is the “GABA cream” - perhaps the nurse got it wrong, I dunno. But during my visit to the pain management director in May, and my visit to Dr. Giudice in June, the word “cream” was not used to describe Gabapentin. It was called Neurontin and Gabapentin interchangeably, and was told to me that it’s usually prescribed as a seizure medication.

That aside, everything was ok with the notes/history. Dr. Giudice came in and we talked about my current pain, went over the available treatments again, and it was suggested I try an aromatase inhibitor. Dr. Giudice was under the impression that I was offered and had refused this treatment before. I find no reference to it in this journal, and I knew in my head that I had not had the conversation with her, so I asked her to expound. She told me that a lower dose would be used for me than for breast cancer and ovarian cancer patients, and that she’d have to add a progestin sidecar so that my ovaries won’t go into overproduction or further estrogen dominance.
I might have been sold but for the fact that progestin was mentioned. I told her why I’m reluctant to even use the Mirena IUD, which contains progestin, and told her that on Levonorgestrel, I get severely depressed. Granted, the dosage is much higher in what I’ve taken (Plan B) than in the Mirena IUD (controlled release), but I don’t want to take the chance after what’s happened to me in the past.

I told Dr. Giudice that I’m seeing a psychologist who strongly suggests I be put on mood stabilisers, and I will be seeing a psychiatrist next week who will see if that’s really the case. After I’m put on psych meds, I told Dr. Giudice, then I might consider the aromatase therapy. She was totally satisfied with my idea/request.

Next, we went to the exam room, and I underwent my second transvaginal ultrasound of the year. I know the routine now so we got right to it. I prepared myself a little better this time by taking 1mg Ativan before my doctor visit, and even though I still experienced pain from the procedure, I was a bit more calm this time around, and not traumatised at all.

The ultrasound revealed bad news: I now have endometriomas on BOTH ovaries, and I still have the damned free fluid (which means it’s likely pools of blood from the endometriomas) around the ovaries. My left ovary has also become reattached to my uterus…all within five months, since my last ultrasound and MRI scans.

So begins the Twenty Questions:
Did the stress of going to school over the summer hasten my illness? Or is it just progressing this way on its own? Is it my diet? Is it not enough exercise? Or is it just the illness, no matter what I do or don’t do?

I suffer emotionally with the 20+ questions, and I suffer physically with the pain.

After the ultrasound, Dr. Giudice made her recommendation - she wants to schedule me for a laparoscopy.

I asked her what changed her mind between her decision a few months ago NOT to give me surgery, and today. She said that there’s obviously more growth going on, and she does not doubt for an instant the pain I am in, based upon what she saw on the ultrasound in April and then today. She’s seeing the growth in progress. She asked me how soon I could schedule surgery. I told her next summer would be best, since I could take part of the summer off to recover. She asked if I could do end of December. I told her I’d have to check with my school, but I’d need more than 10 days this time around for recovery, since I’m not at a desk job like last time around. This time around, I’m chasing after preschoolers all day.

I asked her, if she has to take at least one ovary, what would that mean for me - what adjustments would my body have to make? She looked at me funny and said that apart from the endometriosis and a routine biopsy at time of surgery, she wouldn’t think of taking my ovaries. She said it’s always a risk to do so, since the ovaries, fallopian tubes and uterus are all so closely connected via ligaments and such to the bladder and bowels. It’s tricky stuff, she said.
Hah. That’s quite a change from my visit to Kate O’Hanlan a year ago!

Dr. Giudice told me to think about scheduling surgery soon, and said she’ll have her scheduler give me a call.

I got copies of the ultrasound and today’s notes, and then called my husband and told him the bad news.

We were JUST talking over the weekend about going to Yosemite for Christmas break, and now I am pressured to have surgery at that time. :(

I told my husband we’ll have to have a big talk about finances, and that likely we won’t be able to swing December, anyway, since we’re still clawing our way through debt incurred this summer when I went to a teacher training course.

If I have the surgery on summer break, then I can go to Yosemite in December, and I can fly to Michigan for my promised annual return in the summer, after I recover for a month and a half after surgery. That is, I can have my cake and eat it, too.

Then the doctor asked what most doctors have asked me, “How long are you willing to suffer with the pain?” i.e. “do you LIKE being in pain? Get in the surgery room now!”

It’s not that simple, dammit!! I can’t just drop everything and run to surgery. The last surgery, under a different insurance, still cost me $1,500 out of pocket in co-pay stuff, plus eleven days without a paycheck. I have a different insurance, and I make $8/hr LESS than I did last time I had surgery. I have to check with this insurance, and I have to pay back existing medical bills and other bills FIRST, and also talk to my husband to see how he’s catching up financially, before we jump into the whole surgery in December thing.

Blah.

When I got home, I reviewed the ultrasound paperwork, and compared today’s imaging and round of notes to the last ultrasound, as well as to the MRI.
I found that things got really spinny at that point - it seems that all of us - me and the doctors - have been referring casually to both ovaries as the one which has the endometrioma on it.

In January, March and April, 2010, I experienced debilitating RIGHT side ovarian pain, per my iCal. In mid-March and again in mid-April, it felt like I was experiencing an ovarian cyst rupture on the RIGHT side, I was in so much pain.

On April 21, 2010, the ultrasound revealed the following: Possible endometrioma on the RIGHT ovary, measuring 0.9cm. Nothing on the left ovary.

On May 27, 2010, I went for an MRI, which revealed the following: The RIGHT ovary is NORMAL.
The LEFT ovary has a 1.4cm mass, “which, given the clinical history, likely represents an endometrioma.”

I didn’t pay attention to left or right. I only thought OH MY GOD THE ENDOMETRIOMA IS CONFIRMED AND IT’S GROWING.

In reality, what happened was that Dr. Giudice found an endometrioma on my RIGHT ovary, and the MRI people found an endometrioma on my LEFT ovary. One didn’t just pop out overnight in time for today’s ultrasound.

So in reality, I have had two endometriomas - one on each ovary - for gods know how many months.

The endometrioma on the LEFT ovary was 1.4cm as of May 27, 2010 at the MRI visit, and on September 8, 2010, that endometrioma was visualised on the ultrasound to measure 1×1.1cm. So it is shrinking ever so slightly…possibly.

The endometrioma on the RIGHT ovary was 0.9cm on April 21, 2010 as visualised on the ultrasound, and on September 8, 2010, the endometrioma on the RIGHT ovary grew to 1×1cm, also as visualised on the ultrasound. The MRI did not find an endometrioma on the RIGHT ovary back on May 27, 2010.

I asked my GYN to confirm the size of each of my ovaries - I guessed 3cm. She said just under 3cm. So a 1cm endometrioma is eating a third of each of my ovaries. She didn’t see it that way - she said that the endometriomas are small. But in relation to the total size of the ovary, I’d say the endometriomas are BIG.

In either case, she had already made her suggestion that I get my ass into surgery ASAP.

You know I’m TOTALLY having a pity party right now. :(

Yesterday was Day 1. George was a day late. I suspect he was a day late because I went swimming on Saturday and also drank two Sangrias. The swimming was fun, I treaded water and moved my arms back and forth a lot to get in an upper body workout. We were at our friend’s apartment that day.

Sunday morning, I began spotting, and it was dark brown with clots already present.

At Noon Sunday, I attended a free Alexander Technique pain management class through my local dispensary. I intend to go every Sunday. The instructor helps train us to make better choices with the way we move our bodies relative to our pain issues. Yesterday there were three of us in the class.

After that class, which lasts an hour, my husband took me and our friend G to the movie theatre to see Inception. The movie was a nice little mindtwister, I liked it. After the movie, I used the toilet, and discovered a greyish mass in the dark brown and maroon blood clots when I wiped myself.
GREY! Like I’d see on my surgery photos of what colour the endometriosis is INSIDE of me! I was not okay with this!

Twelve minutes ago, I ingested a zero sized veggie cap filled with medical grade cannabidiol. The dispensary had them in 00 capsules, but I thought that since I’m already so sensitive to everything on the planet, I should try a 0, instead. So here we are, Waiting For It.

…

Twenty-three minutes have passed and I am now feeling a bit mentally cloudy, and I am burping up the taste of cannabis. I’ve always hated the taste and smell of this stuff.
The pain is still with me and has been hovering at about a 7 on the pain scale, with sharp twinges on the left ovary shooting me up to 8.5 on the pain scale every so often.

…

Thirty minutes in, and I’m feeling a bit nauseous. My stomach is gurgling a lot and I’m still burping up the icky taste.
I am drinking Hobee’s Cinnamon Orange tea, which contains black tea, orange peel, cloves, rose hips, and oddly, no cinnamon.

…

Forty-six minutes in, and I’m getting sharp uterine pains which radiate to my lower back. I don’t feel blitzed on the stuff like I would had I smoked it, but I am still waiting for pain relief. I am bleeding heavily today, and have already bled through a thick fabric pad to my underwear.

I am still sick and coughing up thick green mucous in the morning. My husband entered the bedroom after his morning shower and I began gagging on the scent of his shampoo again. He got all offended as he always does when I told him his shampoo is killing me. I told him it’s worse for me right now because not only am I on my period, I also have an upper respiratory tract infection going on, so my sense of smell is heightened, and along with that my chemical sensitivities. He promised tomorrow morning to use the unscented shampoo I bought weeks ago. I think he’s enjoyed not having my chemically sensitive self around while I’ve been at school. I spent all of last week in a motel, and I’ve been staying in a motel on and off for six weeks, so he’s not had to worry about chemicals and fragrances. I shocked him back to reality this morning.
We think we traced the source of the illness - the friend I suspected (M) says she suspects our other friend (P). The timing makes sense - we were both hanging out with P on Thursday, July 15th. M and her husband had given me and P a ride. That night, P had a cough. Then on Friday, M & P hung out again. M said P looked really bad by then. By Saturday, M was sick, and P had lost her voice, but still came out to another event - a friend’s birthday - which I also attended.
P showed up again for the AIDS Walk on Sunday, July 18th; we gave her a ride and hung out all day with her. M also showed up for the AIDS Walk. While P was not coughing so much, M was full on sick by now, coughing a lot.
By 7pm that night, I developed a cough. Four days later, I sounded like a barking sea lion in the evenings and mornings, and that’s where it is even today, another four days after that. My ears have been plugging up and my eyes have wanted to stick shut, they’ve been so gooey. My friend M says I have perhaps another week before I start to feel better, and her husband also caught the illness and has a full blown ear infection, now. UGH.
Despite all this, my husband keeps insisting on kissing on me, because he’s missed me so much. I warned him, and he doesn’t care. Boys.

…

We are at the hour mark now since I ingested the cannabis. As long as I don’t move around, the pain is about at a 4.5 at the moment. I am sitting with one leg crossed under the other on a hard wooden chair. I am uncomfortable and the foot tucked under my leg is falling asleep. So I will have to move. Let’s see if I can relocate to the bedroom and what that does to the pain level.

…

Okay, that was about 20 minutes of moving supplies and myself to the new location, from the kitchen table to the bed. I had to make the bed, set up the wooden bed desk, unplug and move the laptop to the beddesk, plug it back in, and move my homework 3-ring binders and supplies to the bed so that I can attempt some homework today.
At first, while doing all this, I noticed that there was a spike in pain, but I was happily dissociated from it. I could tell there was tightening in the pelvic region, down through my hips. I could feel a burning sensation, but it didn’t hurt. However, after nearly 20 minutes of movement, the pain screamed through the medication, and now here I am, sitting on the bed with a heating pad on my pelvis and a heating pad on my lower back, doing my breathing exercises.
All the movement required to transport things to the bedroom also kicked up the effects of the medication, and now I am even more fuzzy-headed than I was before. I think I may need to sleep, soon. Not moving is in my best interest.

My review of the edible cannabis so far is that although it takes an hour to kick in, I think it might be a viable alternative to the Tylenol 3, if I remember that I still should stay home from work and force bed rest. I accept the fact that there is nothing on the market that will both alleviate my pain and keep me alert and sober.

…

It’s been nearly an hour now since I moved location from kitchen to bedroom, and the sharp pains are still with me, dammit. I should not have poked the hornet’s nest. I am considering taking half a Tylenol 3 and some Ibuprofen at this point. The pain is at 7.5 on the pain scale, and burning.

…

Just over an hour since moving location, and two hours since I ingested the cannabidiol. I sat up instead of reclining back, and that helped the pain go down momentarily, but now it’s back again. The pain is still burning throughout the uterus and radiating to the lower back. Still 7.5 on the pain scale. The heating pads are not hot enough. I am going to rewarm them and also ingest 600mg ibuprofen and half a Tylenol 3.

This concludes today’s medicinal experiment.

Results: recommended alternative to Tylenol 3, as long as I do not move around. Experiment needs to be repeated when I have the emotional strength to try it again. Right now however, I have reached my emotional and physical breaking point with the pain, and I feel that I need the codeine, acetaminophen and ibuprofen cocktail.

4:52pm Update:
About four hours ago, I took a half a Tylenol 3 and 600mg of Ibuprofen, and I did that just over two hours after taking a dose of cannabidiol.

I slept for two hours.

Roughly 45 minutes ago, I took a second dose of the Tylenol 3 - only half a pill, because the pain started ramping up again.
Just over the half-hour mark, I was suddenly supremely stoned. Holy shit. I’m never this freaking high on one half of a Tylenol 3. I know this is the remnants of the cannabidiol, because of the way the high feels. I feel like I just keep ramping up and up, I feel like I’m being launched into outer space.

I uh… I’m gonna go lay down again.