Trapped on a field trip

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

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

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

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

alliebroshpainface6

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

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

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

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

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

Bedridden and missing work again

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.

January 2012 cycle

After 16 consecutive pain-free days, george reared his ugly head once again. The term “pain-free” is really a misnomer, though, because I was in a ton of pain during those 16 days, but it wasn’t endometriosis related. I had a pinched nerve in the neck, which radiated down my left shoulder and arm, and caused much of my upper and mid back to go into spasm. I had little to no mobility of the head without intense pain. The pain also radiated upwards, causing migraines. It all began when I tilted my head back to put in antihistamine eye drops before work on December 14.

The uptime that I would have had for 16 days was completely removed by the pinched nerve. I went through two different muscle relaxers, and was also eating Advil like candy and taking regular doses of Tylenol 3. I was scheduled for physical therapy and potentially a cortisone injection to quell the pain. I bought a TheraCane, which helped only a tiny bit (but having that cane long term is a good idea).

And then, just as I was entering the next menses cycle, with lower back pain ramping up, the upper back and neck pain eased up! Thank goodness, because I can only handle one big pain mess at a time!!

Since the first day of my cycle this month, I have not had any pinched nerve in the neck issues, and I’ve had full mobility back again.

ON TOP of the pinched nerve and the endometriosis, I ALSO developed pink eye for the SIXTH time in three months, because I wore eye makeup with some kind of ingredient in it that hates my eyes. This time mascara was not the culprit – it was black eyeliner with glitter in it, which I wore on New Year’s Eve. The pink eye hit about 36 hours later, on January 2.
Perhaps I had used that eyeliner during one of my other bouts with pink eye, and it was therefore contaminated and reinfected my eye. I don’t know, but I threw it away this time, along with my other eyeliners. Ugh, it’s getting to be too expensive for me to wear makeup, I swear.
I had leftover antibiotic eye drops, so I have been putting those in four times a day for the past week, while dealing with trapped nerve pain (so THAT’S been interesting, having to lay down or lean back, because tilting the head hurt too much) and also dealing with premenstrual cramping.

The cramping had set in on December 30, and was likely the result of me drinking coffee during vacation. Caffeine always kicks up pelvic pain for me. I know better. I was a bad monkey. I could have given myself a few extra days without premenstrual cramps had I just stayed away from the caffeine.
By January 2, I thought for sure george was going to be early. I was urinating more frequently, and felt a fullness in the uterus, so I was checking for bleeding all day Monday and Tuesday. On Tuesday, I actually had no cramps until 8:40pm, when began an increasing stinging pain in my hips, moving inward towards uterus, triggering my bladder.

On Wednesday, I had intermittent pain throughout the day, worsening in the evening when I was at a meeting for a paranormal group that I volunteer for. That night, my entire back from top to bottom was seizing, because I was still also dealing with the pinched nerve pain.

George didn’t actually show up until Thursday – a day late – while I was at work. I had been wearing a pad for a few days, so I was prepared. The low back pain was brutal that day, and was aggravated by all the stooping and bending that I do as a preschool teacher. I ate 2 half pills of muscle relaxers that day, and 800mg Advil gel caps. I looked pretty ill at lunch hour that day, and two teachers commented on it.

On Friday, my head teacher and the two teachers from the previous day were surprised to see me at work. My head teacher said she was told I wouldn’t be in. I gave a contemptuous look and assured my head teacher that I would have phoned her myself, as well as the school, if I were not coming in. She replied that she thought so, and said she was confused by what people had said. I told her that it was likely the two teachers from the previous day, who saw me in pain at lunch hour, and who also know about my endometriosis. My head teacher asked me if that was acting up, and I said it was. I told her I was doing well at the moment, and that I hoped for the best, since I’d been pre-medicating for days.

The pain set in not long after class started, because as a preschool teacher I had to go right into the stooping and bending to interact with children. I consciously used the Alexander Technique as best I could the entire day. Between that, the muscle relaxers and Advil, I was able to get through the work day. That’s not to say it wasn’t a bad day; I bled through two pads, to my underwear, TWICE. Good thing I was wearing black slacks. The pain was at 6.5 on the pain scale for much of the day, though I had entered the workplace at about a 3 on the scale.
It took 2 half muscle relaxers and 1,200mg Advil gel caps to get through the day. The pain ramped further when I got home, despite taking a whole Tylenol 3, a half muscle relaxer, and 400mg Advil.
Before bed, I took another half Tylenol 3 and a whole muscle relaxer. I had intermittent cramps throughout the night.

That brings us up to Saturday – which was yesterday.
I conserved my energy, missing out on one of my husband’s birthday functions during the day. He was at a local game store playing table-top games with friends from 11am to 7pm, while I stayed at home playing it safe, trying to avoid the pain.
I took a continual amount of Advil gel caps throughout the day, and the pain level stayed at about a 4 on the pain scale.

I was able to accomplish some minor housework, which pleased me greatly.

Last night, I joined my husband for dinner at a local German restaurant. I have not had any alcohol in the New Year, because I knew the endo flare was on its way. For dinner, I chose grilled salmon on a bed of spinach.

I made all the right choices, and yet, the pain flared while I was out at dinner. One of our friends remarked that I was looking ‘green’.
I was in fact about a 7 on the pain scale. I broke the ‘no booze during an endo flare’ rule in order to attempt faster drug delivery to the blood stream. I drank some brandy with my Tylenol 3 and Soma. It really did help.
After dinner, my husband and I came back home, and I curled up in bed with the heating pads and passed out from the pain meds.

This morning, I awoke to debilitating pain from one end of my spine to the other, spread out across my back and throughout my pelvis. I was at 8.5 on the pain scale and whimpering a lot. I took a full Tylenol 3 and a full Soma, and the drugs took hold within 20 minutes. This thankfully lowered me back down to a 4 on the pain scale.
Moving around wasn’t really an option, as it brought the pain back up again.
As a result of having to take drugs first thing in the morning, I was barely functional, falling asleep at the keyboard from the drugs. My husband made me a bit of breakfast to eat, and then I passed back out again until afternoon.

I have spent the entire day in bed. I got out of bed long enough to make myself a late lunch, and this rekindled the pelvic pain, so back to bed I went, with my food, even.

This is not how I like to spend my weekends. I’m tired of doing this for 26 years. I’m tired of having spent thousands of dollars on two surgeries that have not made me pain-free. This is no way to live.

I really hope this endo flare is done by tomorrow, because I have to be back at work.

It is now 6pm, and I will get out of bed and move around. I’ve been getting out of bed every one to two hours to move around and test the waters on my body’s mobility and threshold.

…6:37pm: so far so good. I’m leaving the house to go grocery shopping with my husband!

…7:52pm: At the grocery store, my legs got weak and felt like giving out several times. I walked slowly and forced one foot in front of the other. Leg weakness is common with endo and me. The nerves radiating down from the pelvis must still be inflamed or impinged with the endo flare, because the signal does not reach correctly in the legs.
When we got home, I was helping put groceries away when I almost fainted. I literally felt myself go dark and dizzy, and then my eyes popped wide and I held onto the countertop. Now I have nausea. It’s not hypoglycemia – I ate 4 hours ago and I’m not feeling hungry. This is different from hypoglycemia. I know this feeling. It happens right before crushing pain from passing more clots. The rest of tonight should be interesting. I hope it all gets itself over with before work tomorrow!

Sickest I’ve been in a year

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.

Second Laparoscopy: Day 26 post-op

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

I AM SO MAD!!!

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

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

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

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

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

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

ARRRRGGGGHHH!!!

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

Firsts for today:

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

 

Complications/Complaints:

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

Second Laparoscopy: Day 18 post-op

Tuesday, January 4, 2011

I woke up at 6:45am and got ready for a psychiatric appointment. Since I had been out with my husband last night, this meant that I got 6 hours of sleep when I’d been so used to 8 solid hours, so I was really tired.

Outside it was so cold that there was frost on my car windows. I’m glad I’ve kept my snow scraper with me all these years after having moved from Michigan! It came in real handy that day.

After scraping ice off half the windshield

After scraping ice off half the windshield


 

It doesn’t snow at ground level in the Bay Area, but every winter does bring some frost on the ground and on the cars. After scraping and warming up my car, I successfully drove to my appointment, but was late because parking was stupid. The meters in two out of the three places I tried to park were not working correctly. Finally I parked and went inside the building. They have an elevator, so I used that rather than brave the stairs first thing in the morning. My mid back was already stiff and sore from getting into my little Neon, driving, and getting out of the car again. Any time I have to twist side to side for anything, the pain ramps back up again.

My psychiatrist still wants me to try Abilify. She’s been pushing this on me since September, 2010 and I’ve been too afraid to try it because of all the side effects. She offered to get me an even smaller prescription dose than she gave me in September (which is still sitting in the cabinet), and she said while I’m off work already, this should be the best time to try the Abilify to see if I will have side effects.

My rationale states that I want to be alert to any possible surgical side effects FIRST. I don’t want to try to figure out if my mood or whatnot is caused by EITHER surgery OR the Abilify. Too much on my plate, y’know?

After I got out of the psychiatry appointment, I decided to take the stairs down instead of using the elevator. There were three flights of stairs. I took it slowly, but by the time I reached the bottom, sure enough I had pelvic cramping going on.

When I got home, despite being in pain, I wanted to get some housework done, so I tackled laundry. I slowly loaded up my laundry basket with two loads’ worth of dirty clothes, and then scooted the basket over to a waiting luggage cart. I finagled the basket up onto the luggage cart and secured it, then towed the laundry basket out to the back of the house where the laundry room is.

After the first load washed and I had put it into the dryer and the second load into the wash, I took a nap, because all of that had worn me out. I set out 600mg Advil and a half Tylenol 3 for the pain, but then refused to take the meds all day because I’m stubborn like that.
I slept for nearly an hour.

After my nap, I was still really tired, but I brought in my laundry and just let it sit (folded) in the basket. I threw myself together to go join a friend for her birthday dinner. We were late, which made me feel bad, but it all worked out. She was at a Mediterranean restaurant, and since I still have not reintroduced solid meat to my diet, there was very little I could eat. The waiter cobbled together a vegetable plate for me, consisting of sliced asparagus and bell peppers, and I used those to dip into the Hummus. I also drank red wine for the first time since before surgery. I was happy to have the wine because my social anxiety was spiking again. There were only five of us for dinner, but still, I felt very awkward socially.

To my glee, I did not have any major digestive problems with the vegetables or the wine! Yay! The bell peppers usually give me heartburn, but even that was minor on that night. Awesome.

Our friend left to go off to a dancing class, and we paid her bill, being that she was the birthday girl. We then got back to our car and my husband drove us over to Forbidden Island Tiki Bar, where we met up with two more friends who had secured an area for our birthday girl. We hung out and had drinks – I drank an Exotica (Coffee liquor and other flavours in a martini glass), a Chamborlada (Chambord and Pina Colada), and part of my friend’s birthday Fugu drink that she could not finish. That was enough to get me pretty tipsy, nay, drunk. Thankfully, not a sloppy or embarrassing drunk. Chatty, yes. Having fun, yes. It was a good night.

At Forbidden Island Tiki Bar for a friend's birthday

At Forbidden Island Tiki Bar for a friend's birthday


 

We got home around midnight and I went immediately to bed after consuming a pint of water. I had to be up the next day for my post-op appointment in San Francisco.

Firsts for Day 18:

  • Drove alone on my own to Oakland and back – stiffness and soreness returned.
  • Did my own laundry, using a luggage cart to haul the basket.
  • Worked on some homework.

 

Limitations:

  • Still having pain with climbing stairs and driving.
  • Lifting anything over 5lbs is still painful.

 

Complications:

  • Still having thick mucous vaginal discharge – doesn’t smell foul anymore. Is likely ovulation.

Second Laparoscopy: Day 2 post-op

Sunday, December 19, 2010

When I had surgery three years ago, I counted the same day of surgery as ‘Day 1’ post-op.

This time I’m counting the first 24 hours post-op as Day 1, so that means Day 1 post op began Saturday, December 18 at 10am.

I was finally released from the hospital by 2pm on Saturday the 18th, and we got me loaded into the car by 2:45pm. We got home by about 4pm because my husband drove slow where he could to try to spare me the bumps in the road, and because traffic was really bad. Once on the freeway across the Bay Bridge, it wasn’t so bad. But San Francisco and Oakland city streets are a different story. I was crying.

From December 18 to December 20, I took two Tylenol 3 every 3 hours religiously for the pain, so I was constantly loopy.

I noticed by Sunday (Day 2 post-op) that I could already yawn. I couldn’t even do this very well on Day 5 three years ago. All that “10 deep breaths every hour” stuff in the hospital really paid off this time!

I am walking earlier than last time – though I was made to shuffle to and from the bathroom in the recovery room after surgery last time, I was not ordered to walk the length of the corridor and back again before my release, and I certainly wasn’t motivated to do any walking once I got home.

I had two moments of Note to Self over the weekend: first, if you are allergic to everything like I am, always bring some of your own food with you to the hospital in case you are kept longer than you planned for.
Second, always bring your own medication with you to the hospital, and ask for your own type of meds as soon as possible after surgery, if you know in advance that the morphine derivatives that they put you on won’t work. UCSF seems to prefer Dilaudid initially, then Vicodin for pain managment, but those medications leave me with nasty side effects. The first night after surgery, I was already requesting my usual Tylenol 3. When they discharged me Saturday afternoon, they forgot to give me my last dose of Tylenol 3, despite my asking for it a few times. The day staff on 4 East leaves something to be desired.

As of Day 2 post-op, I realised there’s another important thing to remember: count your pills! Record every pill you take so you don’t overdose or short-shrift yourself!

It was on Day 2 that I got confused as to how many pills I’d taken, and so I did a manual count. Thankfully, my memory of the last 24 hours was good.

Pill counting

Pill counting


Another thing that occurred to me on Day 2 post-op was to remember to count how many hours I am awake and asleep. For the first couple of days, I was up for 1 to 2 hours, and asleep for 1 to 3 hours all day/night.

December 19, 2010, 4:20pm – great news! My bowels work! ;)
It was the thing I was fearing most, just like last time – to have a first bowel movement after surgery. I did not force this one, and it was not solid like last time. I ate solid foods and the wrong kinds of foods too soon after surgery last time. This time, I took Miralax one day after surgery, and was able to have a bowel movement two days after surgery – that’s two days sooner than I did last time!

A note about the weather: it’s hard to go walking outside of the house when it’s pouring down rain. It’s been raining since Thursday, December 16.

A note about my diet: I’m eating cream of rice cereal with mango mixed in. I’m drinking lots of smart water and lots of Trader Joe’s free-range chicken broth. I’m eating jello, almond-milk pudding, and Amy’s brand gluten-free, dairy-free freezer mac ‘n cheese. No meat other than the chicken broth.

A note about what I’m wearing – a nightgown! First time since childhood I’ve worn a nightgown. I wish I would have purchased several of these.

A nightgown is your best friend right after laparoscopy.

A nightgown is your best friend right after laparoscopy.


Second laparoscopy – Day of surgery

I slept maybe four and a half hours the night before surgery, but was ready for the day when my alarm went off at 4:30am. I had showered the night before.

It had rained all night. I got my stuff together and off we went in the wee hours of the morning to the hospital. I was very stressed out that we’d be taking my husband’s car to the hospital – I’d desperately wanted a rental car for the day of surgery and the ride home. The reason is that a couple of years ago, the sunroof in my husband’s car leaked, and it was months before he got it looked at, so the interior of the car molded. It smells awful to this day. I even bought him a mold spore detector, and it came back nasty. He sent it in to be analysed and the results came back indicating mold.
He took his car in to to the detail shop to be cleaned, and declared his car all better. But his car was not all better – it still smelled awful. Ever since then, he’s been highly defensive and even angry whenever I bring it up. I have a mold allergy, so I rarely like to ride in his car. We totally smell whenever we ride in his car. He swears he cannot smell it. It’s a point of constant stress between us.

I did not want to have mold on me just before entering surgery. I did not want mold on me on the ride home from surgery. And yet, this is all we had to work with. My car was not an option because the seats are far too low and I feared I’d be in worse pain for the ride home.

We got there at 5:30am like we were told (2 hours before surgery), only to be met with the fact that Admissions was not open, yet! There were two or three other groups of people waiting outside the admissions office as well. My husband went to park the car in a better spot while I waited.

Good morning...waiting for Admissions to open...

Good morning...waiting for Admissions to open...

”It’s


Once Admissions opened, it wasn’t very long til I was registered and sent up to the third floor. I turned in my paperwork at a little window and was given a room immediately. I shared a room with someone this time – an older woman with a jaw injury of some sort.
After I got into my surgery clothes (gown, slippers, net hat), my husband decided I should wear the fez I brought. I was saving it for being discharged from the hospital, but decided what the heck, and put it on. This of course had the whole team of people who came to see me full of smiles and giggles.
A woman named Michelle came in to ask if I wanted to be part of a study for endometriosis, and I told her yes, definitely. I signed all the required paperwork. The anesthesiology team came in and I had notes for them this time – I wanted the drug Versed, and I wanted the intubation tube to be smaller, cuz they’d scraped me going in, last time. I was told everyone gets Versed, now. Woo! Party! heh.

My husband and I went down a partial list of my worst allergies, including latex. I have to thank my husband for remembering to bring that one up, cuz I was focusing on foods. The latex reminder was super important as it meant I’d get a silicone intubation and catheterisation. I focused on the corn allergy, because I did not want dextrose in the I.V., so they gave me a regular sugar/saline bag instead.

I also talked with anesthesiology about bulging discs in my neck, and remembered to bring copies of my MRIs and x-rays which proved the condition. They promised to take good care in positioning my head and neck.

The surgical team came in and introduced themselves – there were four people. Probably the same as last time, but it seemed like a lot. The surgery room sure can get crowded, sheesh!

At some point, my I.V. was hooked up, and I was denied numbing agent – I was told by the woman setting me up that she didn’t carry any on her, or they were running low on it, or something.

After I talked to everyone, the Versed was injected into my I.V. line, and I felt the effects immediately. Soon afterward, I said goodbye to my husband and gave him my eyeglasses and fez for safe keeping, and was wheeled into surgery.

This time, I remember being wheeled into surgery, because they took me so soon after giving me the Versed. I remember entering the surgical room and being asked to help with the placement of my body on the table. Thankfully, the table was not cold, as other women have described on the endometriosis forums. I don’t remember anything after that.

The next thing I remember was being wheeled to a room. People left me on the gurney in the hallway for a few seconds to finish prepping the room. I was in and out of consciousness. My husband says I was conscious upon exit of the surgery room, and says I recognised him. He says I was in the post op recovery room for two hours after surgery. I don’t remember any of this.

The next thing I remember was seeing my husband in the room I was admitted to. I asked how it all went, and he told me they’d gotten all the endo they could see/find. I did not question the fact that I’d been admitted because I didn’t yet realise I’d been admitted.

The surgeon came in a little while later and told me she wanted to keep me overnight for observation, because they’d bumped into the mesentery of the small intestine, which caused immediate bruising. She said she didn’t realise at first that they’d bumped into it with the camera scope, so when they turned on the camera and saw the bruising, they panicked and began searching all over the area for a puncture mark. They called in an oncologist in the event they were dealing with a cancer. The oncologist assured them that it was just from being bumped, and that I’d be okay, and to stop prodding around.

I’m very glad she told me all of this, and of course I was a bit worried. I didn’t like the fact that I’d been admitted to stay overnight, but I was glad at the same time that my surgeon was taking precaution.

Upon hearing the news of surgery complications

Upon hearing the news of surgery complications


At this point I was told I needed to get up and walk around, and that I was still catheterised. I was still pretty wiped out, and high on pain meds – I found out I was being given regular doses of Dilaudid intravenously. The slightest movement made me very dizzy. Getting up wasn’t going to be easy. I began to fret immediately over two things: how much extra things were going to cost insurance-wise, and dealing with a catheter while conscious – especially the eventual removal of it. *shudder*

I really cannot remember too much of the sequence of the day of surgery. I was in and out of consciousness all day. It was extremely painful to move. I needed regular doses of medication and for some reason wasn’t given the pump they said they’d give me. I needed to be repositioned often, because I hurt and was not comfortable in any position. The act of repositioning also hurt like hell, but nurse Annika was good to me.

It was a long day. I was determined not to stay on the catheter – it was getting increasingly uncomfortable, anyway. By evening, nurse Hannah was on duty, and helped me with catheter removal. I cried out several times but she was slow about it like I requested, and very patient with me. It stung and pinched and hurt so bad. Ugh. I haven’t been in that much pain since childhood UTIs afflicted me.

After that, the goal was to urinate on my own, and that meant having to get out of bed. Nurse Hannah put a ‘hat’ in the toilet bowl to measure my urinary output.

At some point, dinner arrived. I was served Juk and hot water with option of a tea bag. I declined the tea, but was so hungry that I ate a third, if not half of the Juk.

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Not long after, I experienced horrible pain under my ribs, radiating up to my shoulders. I recognised this pain from the first surgery as the gas pain, and I also knew that I had eaten too much too soon, because of the pressure on the diaphragm. The pain was unbearable, and I was moaning and crying. Most likely I was a 9 on the pain scale. I got up to walk at this point.

On my very first walk, I shuffled the length of the corridor and back again! I was impressed with myself, and the pain level in the ribs and shoulder dropped to about a 3. My husband and the nurses were impressed with me, too. But the walk took a toll and as I approached my room, I began to experience bad pain. I was once again elevated – an 8 on the pain scale. This time, the pain was centered in the pelvic region and was of course due to the walking.

My husband had gone home and come back – so he’d had a very long day. He stayed with me until about 11pm and was reluctant to go, but needed to go home because he needs a CPAP to sleep.

Husband, watching over me in the hospital.

Husband, watching over me in the hospital.


Nurse Hannah was the best nurse I had while in the hospital. She cared for me all night and was so patient and unconditional. To pass the hours, I tried to listen to my headphones, and I got out of bed and stood for awhile, and I spent long periods of time in the bathroom, trying to get my brain to reconnect with my bladder. I can’t remember when I was able to urinate, but I was very proud of myself.

Finally, around 1am, I was able to sleep. I could only sleep for an hour to an hour and a half at a time, because I had to keep getting up to urinate.

For the record…

I have officially hit the “terrified beyond recognition” part of the pre-operative emotional roller coaster.

I’ve been saying for weeks that I don’t want to go through with the surgery. I’ve been saying for weeks that I’m in denial about it even happening. For weeks, I’ve also been able to discuss rationally how the procedure will be beneficial and why it is necessary. You will notice how the two conversations are mutually exclusive.

Today I had my breakdown. I am now drinking Nigori, because I can no longer cope with the emotional overload.

I am Day 4 of NOT being bedridden. Yesterday at 11am, I went to the Dickens Fair with my husband, and for some insane reason, I thought we’d be spending only a couple of hours there, going in to meet our friends, get stuff on my holiday shopping list done, and get home again to look at bed frames and get some homework done.
Then my husband signed us up for a 6:15 stage show viewing. I told him about how I thought the day would progress, and he replied that he had no idea where I’d gotten that notion from.

I was moody for the rest of the day.

When we got home last night, we needed dinner. We went out to eat – I think. Hell, I can’t even remember, now. Then we came home and waited to hear back from friends who had to bail on evening plans, which was fine by me, because I was exhausted, anyway. It was only my second day on my feet, walking around all day, and my lower back was exceedingly sore.

When I woke this morning, I was moody again. I sulked and avoided homework until it was 11am. Then I hopped in the shower. Then I realised I’d had nothing with protein to eat all morning, and there was nothing in the house. So I went to the grocery. This is when I had a full on internal emotional collapse. The guilt overwhelmed me because homework was still not getting done. I have no idea what to eat anymore because of all the foods I have reactions to, and it’s hard for me to find time and energy to put together a menu for myself each day. I wandered aimlessly in one grocery store, then called my husband from the parking lot of the second grocery store, telling him I had no idea what to do or how to care for myself any longer.

He instructed me to go to Boston Market and just get a quick lunch. I obeyed…after wandering aimlessly through the second grocery store.

I came home with a seed grinder for the seed dietary recommendations my naturopath gave me last month. I’ve not applied a single one of her recommendations, yet, because a lot of the stuff is too hard to find, and I don’t feel like dealing with the castor oil mess, yet, and well I was too stingy to get a seed grinder until today.

…the laundry timer just went off.

And I’m supposed to get back to my homework.

And I’ve already cried about how unfair it is that I can’t live like others do, I can’t eat what everyone else can eat, and I have to have these surgeries.

I can’t take care of myself right now.

I’m not managing, well.

Another pain status update

Thursday was a pain-free day! Yay!

On Friday, the pain returned. I had a lot of joint pain and back pain that day. By evening, my upper back was trying to seize up. By the time we left our friends’ house, my left upper arm was in constant spasm. As a matter of fact, it’s still in spasm.

Despite the low back and pelvic pain for much of the day (which was kicked up after being intimate, OF COURSE), I went walking all over town with my husband, and I refused to take pain medication in case I wanted to partake in any alcohol with friends (which I did later that evening).

I wondered if the resurgence in pain could be attributed to having been intimate with my husband, or if it was due to the impending rainfall, or if it was due to eating inflammatory foods, or all of the above. I felt guilty only for the inflammatory food ingestion, but only a little guilty. I have to LIVE my life, dammit.

When we got home last night, I thought I would need to go right to bed, because for some reason I was running a 99.9°F fever. I got all paranoid that someone I’d spent time with at two Thanksgiving gatherings the day before had gotten me sick. The flu is going around, and I’ve been trying to avoid the preschool crud for the past month as it is.

Despite the fever, I found I was restless. This is when the urge to CLEAN came over me again, as strongly as the urge had been on Wednesday night, when I was on my hands and knees wiping down baseboards in the kitchen and bathroom.

I was up til nearly 3am dusting furniture in the living room and rearranging toys and knick-knacks that we collect.

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Part of the reason for this rearranging was that my husband has just purchased a new television and will be purchasing a new furniture stand for said television, so we needed to clear off the old entertainment center. I just had the energy in me to do it in the middle of the night last night, is all…

All the dust from the shelves had stirred up my allergies, so I took a full dose of Benadryl, hoping that it would serve to knock me out so I could finally get some rest.

Rest was not to be found! Though the good news is that my temperature went back down to normal.

I went to bed around 3am and still could not settle. And on top of it, I was freezing (thanks to premenstrual hormones). My entire body was tense, and my left arm was still in muscle spasm – not painful spasm mind you, but just a continual muscle twitch up near the shoulder.

Around 4am I could take it no longer, and I took my very last half pill of muscle relaxer I’d been saving. Finally, between the Benadryl and the muscle relaxer, I was able to get in a few hours of sleep. However, by 7:30am, my entire body was in full on clench mode again. I was sleeping with my fists balled up and my shoulders trying to touch. Even the heating pad didn’t dent the muscle tension.

I swear, at this point I prayed for horse tranquilizers.

Intermittently throughout the night, the pelvic pain also made itself known. It’s hard to know if the pain was solely because I’d been intimate with my husband the day before, or if it was solely because my period is due today, or if it’s the rainstorm that finally manifested overnight, or if it is a combination of all of the above.

Then there’s the fact that I’ve eaten nothing but inflammatory food and drink all weekend (pie, cookies, chocolate, nigori sweet sake, ham, steak, crab, butter, waffles with syrup, bacon, coffee with sugar and cream, cheetos!!).
Seriously, every last one of those items is on the inflammatory foods list and/or my forbidden foods list.

Today I will begin the round-the-clock Ibuprofen dosing. The pelvic pain is a low, droning ache. The low back pain is moderate, and is as a result kicking up some nausea. I’ve been doing slow stretches since last night for the pain.

My fever has not returned – so far so good! I really don’t like dealing with the endometriosis flareups while also being sick with a virus.

Outside, the rain is an on again, off again drizzle, with threatening-looking clouds. It’s a breezy 52°F (11°C).

baycam11272010

 

And that’s the report – I was due today but so far nothing has started to flow, yet, aside from the pain of course.
I estimate I’m currently a 3.5 on the pain scale. And now it’s time to get up and move around…and take that ibuprofen.