I Will Not Suffer In Silence

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

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

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

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

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

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

I don’t know which way to go.

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

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

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

I had a lot of pre-george pain this cycle, to the point where I was taking over 1,000mg of ibuprofen to get through the day.

I had intermittent right side ovarian stabbing pains all day on Tuesday, January 24.

On Wednesday evening, January 25, I got a sudden droning headache, shivers, 
G.I. issues, crushing fatigue, runny nose. But because I have allergies, it could EITHER have been a food reaction OR a virus.
 People are dropping like flies at work from the stomach flu and bronchitis.
Interesting to note; the crushing fatigue started before dinner. Everything else began during dinner.
So was it a combo of PMS and fighting off a virus, PMS and food reaction, or just PMS?

On Thursday, January 26, I woke feeling much better. However, by afternoon that day, I had the distinct feeling of adhesions pulling deep inside my abdomen. I forget what side; I want to say it was the right side. I had forgotten to record it til Sunday in my calendar. According to facebook, I ate 1,200mg Advil to get through the day on Thursday.

On Friday, I was so busy that I don’t remember if I was having intermittent cramping. It was daycare day at school, and parent/teacher conferences were happening. I was floating from the preschool yard to the elementary yard to parent conferences all day long. Then I picked up one of my students after work and babysat him and his brother til 9:30pm that night.

The next day, on Saturday, January 28, I experienced mild uterine cramping. I chose to drink with friends rather than take any pain meds, because it was an all-day birthday gathering for one of my friends. I wasn’t ready to admit downtime was coming for me. I still wanted to play. I never got drunk that day, but I did have five drinks over the course of about 7 hours. I paced each drink and also consumed water.

I was not hungover on Sunday – like I said, I never got drunk. Sunday however was brutal. I experienced moderate uterine fullness and soreness, and spent the entire day on the couch near tears from the pain. My entire lower back was on fire, and deep inside my pelvis there was a volcano of death brewing. 

I took 800mg Advil, half a Tylenol 3, stretched slowly in doorways, used my TheraCane on the lower back, and used heating pads. I was close to having an emotional meltdown, because my period hadn’t even started, and yet I was in so much pain. Later, I dug into the Tylenol 3, which helped, so I took half pills of that for the rest of the day.

I had 15 pain-free days in January (non-consecutive). The good news though is that nine of those 15 were consecutive.

George arrived on time on Monday, January 30. I’d like to note that January is a “Blue Moon” menstrual month for me, since I got george twice (January 5 and January 30).

Sunday night I had gone to bed nauseous and expecting to get george during the night. Thankfully, I awoke on Monday with minimal pain and no nausea, so I went in to work. Of course, by the time I was leaving for work, the pain and nausea set back in. I was able to make it through the day on 1,100mg of Advil, a hamster bladder, and some whining.

On Tuesday, January 31, I wrote in facebook:
“So is it bad that I’ve been sitting here for the past 43 minutes, waiting for the pain to stop so I can eat food and get ready to go to work?

I guess the 800mg of Advil for breakfast so far didn’t do the trick.

I have 30 minutes before I have to leave for work, but I need to make the judgement call in the next 10 minutes in order to attempt to find substitutes for the day.”

Just under an hour later, I wrote, “Can’t find substitute – still short-staffed. Going in with heating pads strapped to my body like incendiary devices. Hoping for the best. I may very likely have to take a half of a Tylenol 3 on the job just to get through.”

I tried 800mg Advil, then 3 hours later I took 600mg more Advil to no avail, then a protein bar and half Tylenol 3. Finally, the extended care supervisor found some staff to juggle, and gently pushed me out the door around 11:20am. She’s super empathetic and in general awesome that way.

The pain hovered between 6.5 and 7.5 on the pain scale all day and all evening. I saw that I still had some Vicoprofen in the medicine cabinet, so I decided to give it a try again, since the Tylenol 3 didn’t appear to be dulling the pain enough for me. I took half a Vicoprofen and half a Robaxin muscle relaxer I also had left in the cabinet. The pain during this cycle has been centered low on the uterus and pressing into the bowels through the anus. It’s enough to make me whine and cry like a three-year-old. It’s been REALLY brutal.
Tuesday night, I was in bed before 9pm because of the strength of the medications I had taken.

In the middle of the night (3am), I woke from a crazy dream in time to find myself bleeding through my bedclothes. George had circumvented the thick overnight pad and went through my underwear and pajama bottoms to the bed. I had to change my clothes but was not about to change the bedsheets at three in the morning! Thankfully the bed wasn’t a disaster.
Wednesday morning, I awoke with heavy flow, nausea and grinding uterine pain. Thankfully, the woman I had asked the night before to sub got back to me and said she would come in. I took another half vicoprofen and half robaxin pill. Within 20 minutes, maybe less, I was higher than a kite, so I went back to bed. I was fine as long as I was bedridden. If I tried to get up, I was super dizzy and cranky from the medication.

The pain hit me again four hours later, so around 10:30am I took a half vicoprofen and half robaxin. Once again, it took roughly 20 minutes and I was higher than a kite from the meds. This time, however, I decided I was just DONE being so stoned. I was done being bedridden, and now I was depressed over it, because I couldn’t just stop being high. And besides, the pain was leaking through the meds – just as it had done with the Tylenol 3.

That’s when my memory kicked in – didn’t I have a problem with vicoprofen in the past? I turned to my own journal, knowing full well I’d find out that I had a big problem with vicoprofen. OH LOOK, THERE IT IS…
http://www.livingwithendometriosis.org/steph/2009/10/vicoprofen-review/

And so I spent much of the day stoned – trying to leech the meds out of my system. I took only Advil for the rest of the day and the pain crept back in, but I was adamant that I did not want to take any more opiates or narcotics til the bleariness of the vicoprofen wore off. And here I am, at 6:15pm, STILL FUZZY from that shit!!!

All I can do is smack my forehead and label the bottle THIS WILL KILL YOU or some other means of avoidance. I don’t want to throw the stuff away, because in case of emergency, I’d rather have something in the house.

Now…going back to the end-of-January pain cycle. I was saying it was really painful pre-george.

My question is, am I having a bad pain cycle because of the stress at work during the last two weeks of January (parent observations, prep for report cards, and parent conferences)

OR

am I having a bad pain cycle because I chose to drink with friends two days before george was due?

OR

am I having a bad pain cycle because of BOTH the stress and the drinking?

OR

am I having a bad pain cycle for no reason other than It’s Just Endometriosis?

It’s my age-old question, steeped with guilt over the possibility that I am doing the wrong thing to bring more pain.

Whatever the reason or lack of reasoning, the fact is that in the new year, 13 months after surgery, I am still missing work and still on occasion bedridden from endometriosis.

I was bedridden one month after my surgery when the first real menstrual cycle hit. I was bedridden nine months after surgery.
I was bedridden 10 and 12 months after surgery.

The good news is that since my surgery in 2010, I was only bedridden for FOUR cycles, and only couch-ridden during TWO cycles out of 14 cycles total in the year 2011.
That’s much better than I was doing before surgery, where I was bedridden nearly every cycle of the year.

Doing the numbers helps me keep focus, helps me keep a semblance of morale up.

I’ll continue to track bedridden times through the year 2011 and see if I’m edging back towards pre-surgery illness. I’ll continue to tweak my diet, even though overall, dietary changes have not in my opinion shown vast improvement to the overall pain level during each cycle. If I don’t keep doing something to fight, then there’ll be no reason to fight, and the endo really will consume me.

My workplace, some friends and family, and total strangers will not see any improvement in my condition. I see little fluctuations that to me are major. I must continue to point them out so you can see how major in the scope of my illness these small changes are, and why I must keep fighting.

George arrived on Monday, September 26th. The pain was minimal and well managed with Ibuprofen, and I was able to work a full day.

However, Day 2 of my cycle had things ramping up considerably. I woke with moderate pain and bleeding, but still went to work because it was “parent observation week”, and my head teacher made it quite clear that she needed me there, and was not pleased that my health chose such an inopportune time to not be cooperative.

These are not her exact words, but damned near close. When I had given her a heads-up about my health the Friday before parent observation week that my next endo flare was due, her exact behaviour and words were to let out a tsk, a fed-up loud sigh, drop her shoulders and give a look of disdain as she exclaimed, “You’ve GOTTA be kidding me.”

She later apologised, but told me she was feeling overwhelmed/anxious at the prospect of anyone else being in the room with her that week, because the children would be more out of sorts with a substitute around, and she did not want the parents observing the children under those circumstances.

I understood where she was coming from, but I did not appreciate the giant guilt trip because of her anxieties. Her guilt trip is what led me to make the choice to be there to support her, thus pushing the limits of what my body could handle during an endometriosis flare.

So on the second day of parent observation week, I managed my pain with 1,600mg of ibuprofen. Here’s me first thing in the morning, popping 800mg of Ibuprofen in an attempt to get the pain under control (it worked):

Popping 800mg Ibuprofen before work

I stayed for the whole school day, more than fulfilling my obligation to my head teacher, since parent observation hours were over at 11am. However, there were resource classes that I needed to take the children to (library and computer class), so I stayed. Then there was naptime, so I stayed. At the end of the regular school day, before extended care started, I experienced a sudden flare of pain and sympyoms, right after consuming my last dose of meds.

Dammit, I tried to do overlap but the pain snuck in, anyway. My whole body went weak, and I got dizzy. It became hard to walk. I felt like lead for hours. This is ‘normal’ for endometriosis. The lead weight and crushing fatigue sucks. I know part of the fatigue is from all the Advil I was taking, but at least the pain never got above a 6 on the pain scale that day.

I went home and slept for 4 hours.

I then woke in a panic – it was 7:30 and I had not set my alarm! I scrambled out of bed, heart racing, thinking I would be late for work! Then my husband told me it’s PM, not AM.

And I hadn’t even had any Tylenol 3 that day. I was just that screwed up from the pain and fatigue. I was up for a couple of hours and then went back to bed.

I woke in searing pain the following morning, on September 28, just before 5am. I had nausea with the pain. I gingerly got out of bed and took half a Tylenol 3, because I needed to be up for work in the next hour and a half. It took about 35 minutes for the medicine to kick in, with me suffering there in bed the entire time. The Tylenol 3 mostly managed the pain once it did kick in. When my alarm went off, I got up for work and took a shower. I experienced heavy bleeding and moderate pain.
In a daze, I ate breakfast, and went to work. I took a total of 1,400mg of ibuprofen that day, and worked a full day in pain, because of the above-mentioned parent observation week.

Thursday, September 29:
Once again, I was awakened by searing endometriosis pain. This time it was 1am. I popped a Tylenol 3 and 600mg Ibuprofen, and waited for it to kick in. By 2am, I was dissociated enough from the pain to go back to bed. My alarm went of four hours later.
I still required 1,200mg additional ibuprofen to get through the workday. I was very tired and crampy, despite the bleeding tapering off to spotting.

Friday, September 30:
This was a daycare-only workday, as the head teachers were conducting parent conferences all day. This is usually loud and high energy, and wild, as three classrooms’ worth of children are condensed into one large classroom for the day. Despite abundant assistant teachers and teacher-trained assistants in the room, it’s like trying to get monkeys to come down off the chandeliers on a daycare-only day. I had low energy and was spotting, but I managed to get through the work day. I did not take any medication that day, because I was fed up with how much I’d taken all week.

Saturday, October 1:
I was still experiencing low energy post cycle, but I was expected to be at a Child Development refresher class all day. I accomplished this with my inner child kicking and screaming the entire time.

Sunday, October 2:
As happened after my last menstrual cycle, my anxiety was way up after this cycle. It’s not normal, but it’s happened twice in a row, now. Hmmm. I had to do another full day in the Child Development refresher class, and woke up with swollen eyes. As the day progressed, my right eye got worse. By 2:30pm, half of the eye was blood red.
Wonderful. I’d developed pink eye – and likely got it from training center the day before. My pupil in the right eye was bigger than in my left eye by 6pm. I called Kaiser Permanente, who freaked out about the pupil because of my age, and they urged me to go to an urgent care Kaiser center. This, after my whole weekend was shot by being in a training class, and now I have to sit in an ER? I was NOT happy. The result: contagious pink eye. I was given antibiotic drops, which I had to take for 10 miserable days.

Monday, October 3:
I missed work due to the pink eye. Had I not gone to the training class, which was foisted upon me last minute, I would not have gotten pink eye, and I would not have missed work. On top of that, I experienced left side stabby ovarian pain all day, despite the fact that my period had just ended. How’s that for a kick while I’m down?

My immune system hates me. I wish I could fire it. I’d pushed it to its limit by working during an endo flare, and the pink eye was able to sneak in. It’s always something.

I enjoyed a mere four pain-free days before pelvic pain returned. I don’t know if this was early mittelschmerz or what, but on September 9 and 10, I endured intermittent stinging and stabbing in the uterus all day long.

Then, on September 11, I had to contend with dyspareunia all day. I had intense low back pain with stabbing uterine and cervical pain all day after intimacy.

For two days after being intimate with my husband, I had right side stabbing ovarian pain all day. It made me cry out “OW!” or yelp in pain each time. Around 4pm on September 12, there was continuous pulsing pain for several minutes, and on September 13 I had intermittent stabbing ovarian pain all day again. Despite this, I bicycled to and from work on September 12 and 14.

I was able to enjoy three more pain-free days from September 14 to September 16.

On September 17 (my birthday), dyspareunia ruined all the fun again, and lasted for two days.

I then had three pain-free days before the pre-menstrual pain cycle set in on September 22. To make things worse, I contracted an intestinal virus, which caused mean stomach pain on September 23, leading to diarrhea, which lasted for two days. I felt like I could die. My entire body ached and my mood was more foul than my worst PMS.

Speaking of PMS…stomach flu aside, I have to say that this month’s PMS was the most aggressive and depressing since I was on synthetic hormones. The level of rage I had in the past two weeks equals that which I experienced when I was on Yasmin back in 2007. I phoned my mother to ask when she started menopause, and she thinks it was right around the time we moved houses back in 1983, which would put her at 39 years of age. She gave several instances of being a raging psycho hose beast from hell (which my diaries corroborate).

Well here I am at age 40…so I wonder if I’m starting down the path to menopause. Half of me shouts HOORAY! because the hope is that with menopause, the endometriosis will burn out.
The other half of me is freaking the eff out for two reasons: #1 I still look, act and feel like I’m in my late 20s, and #2 all the other crap that goes with menopause is terrifying to ponder.

Going back to the whole pelvic pain thing…
On September 25, I attended the annual Alameda Home Tour, despite getting over the stomach flu and enduring more pre-menstrual cramps. I was on Tylenol 3 and Ibuprofen all day, but not to the point of stupor – I took half pills of Tylenol 3.

To cap off the day on September 25, I developed a migraine.

I have started tracking the migraines. I also had a migraine back on September 7, and I complained on facebook that I felt like I was having an increase in migraines each month ever since my surgery last December. My friend Wanda is the one who told me it could be tied to my cycle, and to start tracking it, so I went back as far as I could online and in my iCal to see if there was a connection.

Well wouldn’t you know it, there IS, and it goes back YEARS:

September 7, 2011 – Migraine lasting several hours (two days after period ended. Also, it was 86F outside and I was at work in the heat for a couple of hours, then bicycled home).

April 27, 2011 – mild to moderate cramps, migraine from hell, lasting 5 hrs (on first day of period)

January 19, 2011 – light to moderate pelvic pain two days after my period started, “with migraine that lasted five hours, then major pelvic pain and bleeding with cramps at 11pm.”

October 12, 2010 – Migraine noted in facebook (1 day after period ended)

January 29, 2010 – Migraine lasting for several hours on same day spotting started.

January 8, 2010 – Migraine noted in facebook (During period)

December 26, 2009 – Migraine noted in facebook (during Mittelschmerz)

July 9, 2009 – pounding headache two days before period.

April 6, 2009 – moderate headache on 4th day of period.

January 26, 2009 – Migraine noted in facebook (3 days after george ended)

In all, during my supposed uptime, I enjoyed TEN total pain-free days, which were non consecutive. This is dismal compared to the last few months.

June 14, 2011: light cramping. Upper respiratory tract infection, thanks to a friend who attended a birthday party I went to. The coughing began on June 13 and worsened on the 14th.

June 15, 2011: moderate cramping. Went to work that day. Dealing with horrible upper respiratory tract infection.

June 16, 2011: george arrived. Went to work that day. Drugged on Tylenol 3 and Ibuprofen. It was setup week for Summer Session, so there were no children to have to look after. Since I’m supposed to be a head teacher for one week during the Summer Session, it was important that I be at work to help set up the classroom from the top down, and go over lesson plans and such so all the summer teachers would be on the same page. Dealing with horrible upper respiratory tract infection.

June 17, 2011: heaviest day. Went to work that day. Drugged on Tylenol 3 and Ibuprofen. Was pretty useless. Kept wanting to go home, but was too stubborn to do so. Dealing with horrible upper respiratory tract infection. Convinced at this point that it’s Whooping Cough. No health insurance to get looked at. They’d just tell me to ride it out, anyway.

June 18, 2011: Fed up with being ill and went out with husband to a monthly club night. It’s a low-key club to begin with, so it was no problem to be sitting and looking pretty with the others. I had some conversation with friends. It was alright, but I was severely exhausted from the pain and the meds. Dealing with horrible upper respiratory tract infection.

June 19, 2011: I felt well enough to go out to a Pirate Fair, which was happening by Mare Island. I knew that the ‘last gasp’ was going to happen, but I was so fed up with being in pain and being drugged, that when a break in the pain came, I went out for some fun.

The ‘last gasp’ occurred shortly after we arrived. We had walked probably one and a half blocks worth of shops at the fair, when I felt a trickle. I knew that once the bleeding resumed, the pain was not far behind. A few minutes after that, the nausea set in, and then the pain.
The other thing that sucked that day was the outside temperature. It was supposed to be in the low 80s, but ended up being over 90°F outside. I was in terrible pain, trying to pass huge clots, which elevated my body temperature, and so I was absolutely miserable. Here’s me sitting behind a jewelry booth in a spit of shade. Notice that I’m wearing a corset while trying to deal with this pain. Yeah yeah, I knew the pain would come and I still rebelled and wore a corset. How mean I am to myself, I know.

 
I took a half Tylenol 3 and Ibuprofen. Half an hour later, I took the other half Tylenol 3. I wandered around the fair in a daze. The heat was horrible – people of all ages were puking from heat exhaustion because there wasn’t enough water stations around and nobody thought it would get that hot outside.

Despite all of that hell, we came back from the fair, washed up, changed, and went out to dinner with my husband and his father for Father’s Day. The intense bleeding and pain had subsided, and I was spotting. The fatigue was still with me, and I was still dealing with the horrible upper respiratory tract infection.

I had residual coughing fits which lasted until around June 30th. There was bitter resentment at having gotten sick from a sick friend who attended a party or gathering – AGAIN – it happened twice within 12 months. I’m thinking too that it was the same person. There are two in our group who refuse to abstain from social events when they have a barking croupy cough. From now on I must remind myself that when they are sick, I will not go to the same events they are at, because they too easily give me their germs.

Oh – one last thing I just remembered: during the June cycle, I bled through every single one of my cloth pads. That has never happened before. Every last one of ’em got bled through, even the thickest ones. I didn’t resume eating meat until towards the end of June, so I wonder if my anaemia was up because I hadn’t been eating meat. We’ll see, because I went back to eating chicken. Now I eat chicken and fish, but still no cow, pig, deer or other red meat per the geneva convention of endometriosis treatment.

I’m up to my eyeballs in work and school responsibilities right now, so I’ve not kept up with blogging in my usual narrative style. Sorry about that.

This is just a list – a run through of the past month. It will be TMI. I’m still experiencing some of the same things as happened before surgery.

Sunday, March 27, 2011: The usual pre-menstrual anal bleeds, which warn me that my period is on its way. It’s not always painful – it’s just alarming to see that much bright blood with a bowel movement. It happens every month right before my period.

Monday, March 28, 2011: Continued anal bleeds.

Tuesday, March 29, 2011: Moderate low back pain

Wednesday, March 30, 2011: Intermittent uterine cramps throughout the day.

Thursday, March 31, 2011: Very painful cramps which woke me at 3:30am. Took 1/2 T3. Cramps present again at 7am. Still bicycled to work because I’d missed my bus. Meanwhile, still dealing with bronchitis and had to use my inhaler when I got to work. Vaginal mucosa changed that afternoon to a pale pink.

Friday, April 1, 2011: George arrived. Still went to work for a full day. Hung out with friends at their house that night, eating tons of junky food.

Saturday, April 2, 2011: Day 2 of george. Took public transit to get my hair cut by a friend, then took transit home, then went and visited father-in-law in hospital rehabilitation.

Sunday, April 3, 2011: Day 3 of george. Bad pain day.

Monday, April 4, 2011: Worst pain day – called in sick to work. While sitting on the couch with heating pad, I turned to my side while in the midst of a violent coughing fit, and it felt like I broke a floater rib on my right side. The pain was excruciating.
Apparently this was the last of my coughing fits, and it really went out with a bang! I called the doctor, who said it’s likely a strain, not broken, cuz there’s no external bruising.

Tuesday, April 5, 2011: went back to work, still bleeding but the worst pain was over. Now dealing with the very painful rib strain. On 1,200 – 1,600mg Ibuprofen, taking Tylenol 3 at night to sleep through the rib pain.

Wednesday, April 6, 2011: Spotting. Still dealing with the very painful rib strain. On 1,200 – 1,600mg Ibuprofen, taking Tylenol 3 at night to sleep through the rib pain.

Thursday, April 7, 2011: Spotting. Still dealing with the very painful rib strain. On 1,200 – 1,600mg Ibuprofen, taking Tylenol 3 at night to sleep through the rib pain.

Friday, April 8, 2011:

Despite having cramps this morning, I did not want to chance taking my car to work, and I had forgotten again to see if there was a quick bus to my workplace…so I bicycled to work. This is the first time in 134 days that I have bicycled! It felt so good. Granted, I live only a mile from my job, but still, any exercise is good exercise. The weather has finally turned from constant winter rain to unseasonably warm and sunny; yesterday it got up to 83°F and today it got up to at least 86°F, so there was no excuse not to bike to work.

Speaking of exercise, I’ve been weight lifting again. Don’t get excited – they’re only 3lb weights. But as I said, any exercise is good exercise. I typically do the weights before bedtime, but I’m trying to get better at lifting when I wake up in the morning, too.

This month has been stressful for three reasons:

• I’ve been sick all month
• My father-in-law’s been in the hospital and just underwent a Transmetatarsal Amputation on Monday of this week
• A classmate who wanted to work with me on the thesis project for graduation has not done anything useful, and I have to fire her.
• Mercury turned Retrograde yesterday.

I detailed my getting sick in this post. I felt like I was getting worse, not better, on that day, but instead of starting in on a new pack of antibiotics, I decided to give it a few more days, since my doctor said the z-pack was supposed to have benefit for 5 days after the last pill. I just didn’t want to have to get a yeast infection. I have enough going on down there as it is with the endo.
I’m still coughing up junk, but not as much. I’m still needing what’s left of my inhaler once a day, usually in the morning. My ears are still clogged and the left ear is still painful, but not all day long anymore. So I guess I’m getting better…

Around about March 25, my arse started bleeding again. Same as it ever was, always a week before my period. It lasts a few days and happens during bowel movements, and then stops.

This week my symptoms were near-debilitating low back pain on Tuesday, and intermittent uterine cramping throughout the day on Wednesday and Thursday. Then last night I went to bed with the heating pad, woke with worsening cramps at 3:30am, took a half Tylenol 3, and went back to bed with the heating pad. This morning when I got up for work, I had moderate low back pain and the pelvic pain was about a 4 on the pain scale.
I kept forgetting to take ibuprofen all damned day, but after biking to work, I felt like I was more limber throughout the day. So that’s excellent.

Regarding my stress level…my father-in-law spent February in the hospital and then in physical therapy rehab after having his left toe amputated. Five years ago, he had his right toe amputated. He has mismanaged his diabetes for 20+ years, and is now shocked that he’s losing digits. When, two weeks after being discharged from rehab he was back in the hospital with another gangrene toe on the left foot, all hell broke loose (again) with his wife.
She told him he can’t come home until he can properly care for himself. Then she went on a previously planned vacation with her son and wasn’t back in time for her husband’s surgery. The surgery was a much agonised-over foot amputation.

His wife got back the day he had surgery, showed up at the hospital once he was out of the recovery room, and then fled in a hissy fit a couple of hours later. I’m the one to thank for that, because I got tired of her talking about him as though he wasn’t in the room with us, bitching about how he doesn’t take care of himself and it’s all his fault he’s back here again (not entirely true – he has a calcified artery in his leg, so no amount of dietary management or exercise was going to stop the toes from dying. She even told me earlier in the day that she was throwing out all of the “liquor”, even though he only has wine in the house. I tried to explain that his occasional glass of wine isn’t what set all this off but she wouldn’t have it.

Sure, yeah, it’s still his fault over time due to gross mismanagement of his illness, but he didn’t do it in the past two weeks as she keeps claiming). Anyway, I told her she and he need to work this out, it’s not for me and my husband to figure out for them. And apparently that’s talking down to her and I was told, “You can’t talk to me like that!” and she fled. Left her husband there, eyes welling with tears. Refused to answer her phone for roughly 15 hours. Wasn’t at the house when we drove by after hanging out in the hospital awhile longer.

I found out later that she’d had a previous marriage and that the guy was an alcoholic who literally drank himself to death. So it seems she’s having a giant triggering flashback that she can’t escape, and she’s projecting her previous marriage partner onto her current partner. Wow, serious mental issues, there. I’m told she refuses to do therapy. The way she freaked out when I said they need to work on their stuff kinda indicates her refusal towards therapy. I dunno. I don’t actually want to talk to her again for awhile.

The other stress I’ve had revolves around continuing homework and internship responsibilities, and the classmate who wanted to work with me on the thesis but who has barely done anything at all towards it. I’m going to see what she produces for the seminar next weekend and then fire her if she doesn’t have enough to show for. Ugh. Hate it. But she can’t take the credit for all my work. I won’t let her.

In the food and drink department, preceding this menstrual cycle, I have imbibed on wine, port and nigori to the point of drunkenness, but not anywhere near the point of making an ass out of myself. I have gorged on chocolate and cheetos – staging a rebellion I guess – I have no excuse. I know these things hurt me and I did it, anyway. I wanted comfort food to deal with everything.

Regarding the astrology thing with Mercury going retrograde – I’ve been feeling the effects of that for the past two weeks. Ugh. It becomes harder for me to control my mouth. It becomes impossible for me not to drink or spend money or in general do unwise things to my body and mind. Most people find astrology to be hogwash. That’s fine, we’re all entitled to our quirks. If you don’t like my quirk, I don’t need to hear about it. Plus, I’m PMSing. Telling me how illogical astrology is will just get you thrown into a pit of rabid weasels.
I’m probably PMSing so badly because of all the junk I’ve been putting into my body. But it’s too late, now. I just have to go through this month and hope all the damage I did isn’t long-lasting in my body tissue.

The PMS is pretty harsh. I’m extremely moody and my body temp is all over the place, but mostly I’m freezing. I just spent a day in hot weather, came home, stripped down to my underwear, and within an hour I was freezing and now I’m still freezing, even though the house is 70°F inside (it’s down to 73°F outside). I’m literally wrapped in a velour blanket. Oh and the cramps are back again, now that I’m cold. Awesome. Good thing I just ordered some leafy green saag from the local Indian restaurant. Oh yeah, spending money again. *sigh*
George will be here officially in a minute – the mucosa changed colour this afternoon.

Lastly, I don’t think I’ve experienced mittelschmerz this month. I know I said the same thing in January and went back on it, and then in February it was difficult to tell for sure because it could have either been dyspareunia or mittelschmerz, or both. This month, I was just too stressed out to remember to record whether I was having mid-cycle pain.

I did go to work that next day on March 10, and I worked nearly the whole day before the pain decided to come back and bitch-slap me one last time. I left an hour early. So this month, I’ve only missed one day and one hour of work total on account of george, and once again I was never fully bedridden during this cycle. That’s two months in a row now!

This is really great post-op news!

Next period is April 1st (ha-ha). We’ll see how it goes. I remain hopeful.

The main complaint for this month is attack of the killer viruses.

February 28th I came down with the flu, and that was on a Monday. I went to the doctor, who listened to my lungs and remarked that he heard “crackles.” He listened again but I had a coughing fit, and that seemed to clear things up. I joked that he’d have to wait for the next build-up before determining “crackles” again.

The doctor asked if I’d had my flu shot. I said no, because I’m allergic to eggs (flu shots are created using chicken eggs, did you know?). He then suggested I try Tamiflu. I told him I have previously examined the drug and its side-effects, and decided that my sensitivity to meds, coupled with dealing with autoimmune disease, did not make it appealing to chance multiple side effects on the off chance that the flu might be lessened by one or two days.
The doctor asked what autoimmune disease I have, so I told him I have endometriosis. He looked annoyed, put down his pen, looked at me and said, “Endometriosis is not an autoimmune disease.”

My jaw dropped. I politely told him that the confirmation on this is fairly recent, so yeah, it’s actually an autoimmune disease. Meanwhile, his intern student doctor, standing to my left, murmured under his breath, “yes, it is an autoimmune disease.”

The doctor retorted angrily at me, “It is NOT an autoimmune disease!”

I thought for sure his next comments would be something about endometriosis MERELY being painful period, and why don’t I try some Midol to ease the cramps…he was at that level of condescension.

I told him “First of all, I’m the one with the disease, so I’ve done my homework, so yes, it IS an autoimmune disease, and secondly, there has been proven anomaly on chromosomes 1 & 7, WOULD YOU LIKE COPIES OF THE STUDIES, since I am subscribed to medical journals?”

The intern again quietly agreed, “it is an autoimmune disease.”

The head doctor wanted to hear none of it. Red-faced with rage, I informed him that I’d be inserting the studies into my medical file for his education.

THIS IS THE TWENTY-FIRST CENTURY, AND YOU ARE IN A SUPPOSEDLY DEVELOPED NATION, IN A SUPPOSEDLY HIGH-TECH DOCTOR’S OFFICE, TELLING ME WITH YOUR IGNORANCE THAT YOU ARE NOT UP ON THE LATEST MEDICAL RESEARCH?!?!?!?!

This is the second doctor’s office I have chosen in this city. I see I may have to fire this office, too. Sadly, I’m certain that all local doctor’s offices are this stupid. When I was leaving the exam room, the intern held the door for me. I smiled and quietly thanked him for backing me up. He grinned and replied that he was looking forward to the heated debate on the topic. It seemed like he was trying to tell me that he’d be in trouble for agreeing with the patient, and that it wasn’t his first run-in with the doctor. Ugh, poor intern. I sincerely hope he makes it out of med school in one piece.

When I got home from the doctor’s appointment, I called the office and told them to put it in my file that I will never see Dr. James E. Eichel again. As a matter of fact, my husband reminded me that the reason he left that doctor’s office the first time around in search of another family practice was because of Dr. Eichel’s condescending attitude.
I did a background check on him, nothing comes up. But take it from me and my husband, the guy’s a total asshole. Also, check out doctor reviews on the web – numerous people have found him to be condescending and rude.

I was so angered by this doctor telling me that my debilitating chronic illness is not in as valid a category as he feels it should be, that it has taken me 24 DAYS to write about it, and even now, this is the best verbiage I can find without using a string of expletives and then throwing something across the room.

So that was Monday, February 28. I took the whole week off of work to get better. However, by that Friday, the flu had turned into bronchitis. I was back in the doctor’s office, and again a doctor listened to my chest. By now I was seriously wheezing, too. The doctor said she heard “crackles”. Hm, this is the second time in a week that word was used, so I asked what it meant to detect “crackles.” She said it means pneumonia at worst. I asked if Dr. Eichel had put it down in my chart that he’d heard crackles back on Monday.

GUESS WHAT.

He made no mention whatsoever!

ASSHOOOLLLLLLLLLLLE!

So I was sent to the hospital for a chest x-ray. Thankfully, it came back normal. However, I was diagnosed with bronchitis and put on an inhaler.

The following Monday is when I got my period. I went to work that week, and only missed one day of work, and took it as easily as I could given the bronchitis and menstruation. I hacked a lung every day, and alarmed the students some of the time with my coughing fits. Being outside for a couple of hours each day didn’t help either, what with the cold, wet weather we’re having.

Ten days later, just as the bronchitis was clearing, I felt well enough to go dancing. We got home late, and I got about three hours of sleep, got up and went to work.

By the end of the day, I had a sinus infection. Go me. :(
Three days later, I had an ear infection.

Friday, March 18 I was back in the doctor’s office. The doctor, thankfully my preferred doctor this time (April Fredian), walked into the exam room, took one look at me, and sighed, “you got it, didn’t you.” She told me that this flu-turned-bronchitis-turned-sinus-infection is a really nasty thing she’s seeing in a third of her patients, and even she did not escape it. She estimated that I will be sick for another month and a half.
Dr. Fredian examined my lungs (clear) and my ears (left eardrum inflamed, could rupture), and my nose (more allergenic than viral). I was told all I could really do was take anti-inflammatory meds and hope my eardrum didn’t burst. She gave me codeine cough syrup and suggested I try Afrin for the allergy-ridden nose. I asked if antibiotics would help with the ear infection – she said if by Sunday my ear still hurt a lot, to get on antibiotics. I asked what kind, cuz I still had a z-pack at home. She said the z-pack would do, and then amended her prescription, saying if my ear still hurt by Saturday, that I had her permission to take the antibiotics.

So on Saturday, the ear still hurt, and I started the antibiotics.

Today was Day 5 of the z-pack – the last day – and dammit if the sinus infection and ear inflammation didn’t get worse. WTF.

So I’ll be back in the doctor’s office again tomorrow for further advice. I’ll be demanding ear drops or something. UGH, I just want to be well again.

March 17 was 90 days post-op, and I had promised myself by March 1st I’d be back in the gym again, toning up after all that downtime from surgery. And BAM instead I get a month of wheezing and staggering amounts of lung and sinus butter. I cannot believe the head and chest can produce so much phlegm. It’s disturbing.

Oh, to go back to endo for a moment – my husband and I were intimate on March 20 and I did experience dyspareunia afterwards, but it didn’t last more than a couple of hours. It was sharp, intermittent pain – the type I thought would get worse and last for days as usual. But it didn’t! YAY!

Going back to the ear infection – yesterday I was so depressed by not being able to get back into the gym that I literally cried.
The ear pain got so bad today that I had to plug my left ear for the last hour at work, and I felt like crying from the resonating noise (I work in a preschool in daycare mode this week, so you know it’s anything but quiet).

I got home and took Tylenol 3. I’ve been in a stupor ever since, but at least I’m dissociated from the screaming tinnitus (both high and low drone pitch simultaneously in both ears, plus the pounding eardrum pain in the left ear).

That’s all I’ve got. Great news on the endometriosis – keeping that in mind through this depressing flu season crap.

Friday, January 14, 2011

Had a sad dream where I was in a stonemason’s shop, searching for my own headstone.

When I woke, I became alert to the fact that my pelvic pain had worsened overnight. The pain did not feel like post-op pain. It felt like my “usual” menstrual pain. My period was due on Monday, but because I had pelvic surgery 28 days ago, who knows…perhaps my period would be early or late. All the organs being fiddled with and such…

I called my surgeon’s office and my family doctor and asked if anyone had gotten my blood test results back, yet. My family doctor was the first one to call back with the info.
I was told that my red blood count was at 33 (low again) and that my liver count was normal at 42. However, my white cell eosinophil count was still high – it was 1,100!
I asked what I do next, and the doctor replied, “you go see your surgeon!” I asked if there was anything I should be doing in the meantime, should I go to E.R.? Am I contagious? The doctor replied she does not get to make recommendations, that this is on my surgeon. She said to just wash my hands thoroughly in case of contagion. So I called and left another message with the surgeon.

Flustered, I sat straight up on the couch to adjust my sitting position, and I screamed because I was hit with a sharp pain at the site of my pubic incision. It was a deep pain, not a surface pain. Maybe the pain was not in the incision itself but the same area where prior to surgery I would say “the pain was low in the uterus near the bladder”.

You know, I had been truly surprised when, right after surgery, my surgeon told me she had not found any endometriosis on the bladder reflection like my previous surgeon in 2007 had. My new surgeon said she found on evidence of endometriosis on or near the bladder or bowels. So all the pain I have is just radiating, then? It feels like it’s bladder pain but it’s really just a large aftershock of pain that had radiated out from the uterus?

I hate endometriosis so much.

After my screaming episode on Day 28 post-op, I whimpered and emotionally caved in to medication. I had barely been taking any medication at all, and had not taken ANY Tylenol 3, since December 27th when I was terrified I’d killed my liver.
But after the screaming pain, I caved in and took 400mg ibuprofen with a half a Tylenol 3.
Shortly thereafter, I went for walk with my husband because I was too stubborn to lay down and submit to the pain. I figured if I walked, that perhaps I would loosen up adhesions and such.

We walked 2 miles and stopped at grocery along the way!

Half-way through the walk, I had to sit down for about 15-20 minutes before hitting the store because the pain had ramped up in my lower back and my pelvis. It had made it difficult to continue putting one foot in front of the other. We sat at a bench and just hung out in the warm sun for a bit.

My husband

Me, sitting straight up cuz of the pain

A view of San Francisco and the smog...

Closer view of San Francisco in the smog

Alameda beach and Bay Farm peninsula in distance

Alameda beach and Bay Farm peninsula in distance

When I felt ready, we continued our walk and went towards the grocery store. As soon as we got to the store, my surgeon’s office called back. It was Dr. Wang, and she insisted that whatever infection is going on with me is NOT directly related to surgery. She suggested allergies or at worst, a parasite infection. She told me they do not specialise in this area, and that my family doctor has to see me. At that point, my family doctor called on the other line, so I took the call. She’d been briefed already and apologised to me for pushing back to the surgeon. I told her it’s okay, I think the surgeon is the one passing the buck, here. The family doctor said I’ll have to submit stool samples to rule out parasites. HOW THE HELL WOULD I HAVE GOTTEN A PARASITE INFECTION.

UGH.

Family doctor told me to stop in on Monday to pick up the collection tubes. I went back into the store to find my husband and finish our shopping.

When we got home, to my surprise, I had increased mobility! We made and ate dinner, but within two hours, the pain returned. I took another 400mg ibuprofen and another half Tylenol 3.

We spent the evening at a friend’s house playing card games – I could not sit in the provided hard chair because I kept getting sharp pelvic pains whenever I laughed or sat up straight. I was given a plush computer chair to sit in and that helped a bit, though I still had to get up and stand or walk around every half hour or less.

After game night, we came home, and I crawled into bed.

Firsts for today: Walked two miles despite having premenstrual pelvic and low back pain.

Complications: Sharp pains beginning in afternoon and lasting til evening whenever I laughed or sat upright.

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.