I Will Not Suffer In Silence

Sunday, January 16, 2011

I would like to share a life profile about a co-worker, but first, I need to provide you with background:

In September, 2009, I began working my first school year as a co-teacher in the new Outdoor Classroom. I was also enrolled in a college-level intensive teacher training class for “Practical Life” curriculum every other Saturday. From the moment I began the Fall Semester, I began to get chronically sick. I fought upper respiratory infection after infection, which turned into a full on lung infection by February. It was hard to pin-point at first what the cause of my illness was, because in August I had gotten new foam pillows and a foam bed, gotten my home sprayed (on the inside) to take care of massive ant invasions (they were even coming up through the foundation!), and I had started working outside five days a week. I was by this time using an inhaler for the first time in my life. My doctor decided to pull me from the Outdoor Classroom and said I had to work indoors for three months, to see if my lung infection cleared up. (It did - so the result is that the outdoor classroom is toxic to me).

But that is only the background info - here is the real story I want to share:

At the beginning of March, 2010, I was placed in Ms. Wendy’s 1st & 2nd grade classroom while she was on a three-month leave of absense for a medical reason, which at that time, was not publicly available.

Wendy’s co-teacher Janelle became the head teacher, and I became the assistant. While working in Ms. Wendy’s room, I kept in email contact with her. At one point, I wrote back to her to let her know I had to go home early because of endometriosis pain.
Wendy wrote back to me, saying, “I know how painful it can be. I had it in my twenties and had the laparoscopy. I went on a wheat, dairy and sugar free diet for 6-12 months and that did it for me.”

This was the second teacher in my school to let me know that she had battled endometriosis. The first teacher, Ms. Kim, who worked in one of the pre-kindergarten classrooms, was diagnosed during laparoscopic surgery for fibroids if I remember correctly. She told me that up til that point, she never even knew she had endo, because she was never in the kind of pain that I exhibit. She said apparently she has a bad case of endo, but it doesn’t bother her. She didn’t even know that the stuff grows back after surgery.

So I am teacher #3 with endometriosis in that school - and two out of three said they either manage it well or are not symptomatic.

I began to wonder about Ms. Wendy’s condition, though. She had managed her endometriosis, but what else was going on? Nobody would tell me.

In May, 2010, Wendy returned to her classroom - frail but determined. She looked like she’d been run through chemotherapy, and her fingertips were often blue and cracking.
I finished out the school year as a floater and substitute assistant teacher.

Over the summer, I did not see Wendy for two reasons - not all head teachers wish to work in the summer months, although all employees get the option to work summer daycare classes if they want to, and I had also taken the summer off to finish up the teacher training courses that I had begun in August, 2009.

When we all returned to school for the Autumn 2010 school year, Ms. Wendy had taken a position as head teacher for the 3rd/4th/5th grade classroom, and I was assigned to one of the pre-kindergarten rooms. Every year it seems, teachers can be moved around to gain the widest possible experience (Ms. Janelle stayed on as the 1st/2nd grade teacher, and Ms. Kim took the Kindergarten head teaching position)

By November, however, Ms. Wendy’s health had faltered again, and she once again went on medical leave. It was at this point that the mood of the whole school administration could be easily read - Ms. Wendy was dying. Although information about her condition was still kept secret, rumours leaked that Wendy had in fact battled cancer.

On Tuesday, November 9, while I and another co-worker were enjoying lunch in the break room, the financial director walked in and was teary-eyed. I asked her could she please tell us what is going on with Wendy. She informed us that Wendy came back for a visit, and that this would be our last chance to see her, and that she had chosen not to take any further medical treatments. It came to light that yes, Wendy had cancer, but that was a long time ago. The financial director didn’t know or didn’t want to say any more than that. So we turned to the secretary, who told us that Wendy has something going on with her lungs, that it’s not cancer, but that it is terminal, because she’s chosen not to continue treatment. My co-worker, who I’d been eating lunch with, just lost it at that point as tears ran from her eyes. She sat silently but said she didn’t know if she could compose herself in time to go say goodbye to Ms. Wendy. I gave her a few minutes. This co-worker had grown up in that school and had had Ms. Wendy as a teacher. Incidentally, Ms. Kim, who also has endometriosis, is this co-worker’s mother.

After she composed herself, we walked across the street to the auxilliary classroom to find Wendy exiting the building. We caught her just in time to give gentle hugs and say goodbye. Ms. Wendy asked me how I was doing with my condition. I told her I would be having surgery the next month and that hopefully I would see beneficial results like she had. I told her we are fighters. She smiled, and we watched her get into the car with her family and support network, and drive off.

After that, the school secretary told me without my prompting about an online community that Wendy had organised for people who want to send love and good thoughts to her. Two days later, the secretary emailed me the link, and I sent a request to join. I was approved the same day.

The same day as my surgery, on December 17, 2010, an email went out to the parents of the school, and all of the school staff was copied on the email:

December 17, 2010
Dear Elementary Parents.

It is with great sadness that we have some news to share with you.

We are giving you an update on Ms. Wendy’s condition. Wendy recently informed us that she is now under hospice care for the terminal condition, Pulmonary Hypertension with complications. This means that the constriction of her blood vessels has become a strain on her heart.

So I finally learned what the deal was - the thing that is taking her down is called Pulmonary Hypertension. That explains why her fingers are always blue, and I guess explains how skeletal she’s become.

By being part of Wendy’s online community, that’s how I was invited to a beautiful celebration of life ceremony on Day 30 post-op, Sunday, January 16, 2011.

I had already had an emotional day on January 15, dealing with the loss of babies from two endo sisters. I had spent that day listening to Dead Can Dance and Lisa Gerrard, and the album Duality by Lisa Gerrard stuck in my head and made perfect sense for me to give to Wendy. So before we left to go see Wendy, I burned a copy of the Duality album to gift Wendy with.

My husband drove me because my car’s brakes are in bad shape. I was also cramping because my period was due the next day. I had called my doctor the previous day and asked about my high eosinophil white cell count - I wanted to make sure I was not highly contagious or anything like that. My doctor told me to just wash my hands really well, and that if I were contagious, it would be through contact with my hands. I must have washed my hands five times while at Wendy’s life celebration, because I had repeatedly mopped my eyes and nose. I tried to keep from crying, but the beautiful things that people said to Wendy, who sat at the front of the room in a wheelchair with her husband next to her - it just moved me to tears.

During the two hour event, chanting, thankfulness and love filled the room. We did meditations, and I sent out a blanket of love to enfold the entire room. Literal hearts popping in the air above the blanket of love. It was a very powerful group meditation.
The people who had organised Wendy’s life celebration had printed out lyrics to the chants, and that’s how I found out that Wendy’s belief system is through her Siddha Yoga family. According to wikipedia, “Siddha Yoga is a spiritual path (or new religious movement) based on the Hindu spiritual traditions of Vedanta and Kashmir Shaivism.”

When I was in college, I studied world religions, trying to find a new spiritual path for myself. I remember studying Hindu, and it almost gelled for me, but not quite. Then I discovered Buddhism, and it clicked with me in a way that Hinduism could not. I was seeking to get away from the idea of monotheism or an ultimate creator, and Buddhism allowed that for me, and still does. I became attached to Tibetan Buddhism in 1995, and have always held that close to my heart, even when for years I was a practicing Wiccan, then in general a Pagan.

To give you an idea of the similarities and differences of Hinduism and Buddhism, I found this site for you.

During Wendy’s life ceremony, as I said, I shed tears. The emotional power in that room that day overwhelmed me, and my cramps set back in. I had to take my last Ibuprofen and a half Tylenol 3 while sitting there in the audience. I left a half hour before the end of the service, but my husband had not returned yet, so I stood by the door to the room and watched the rest of the service. When Wendy and her husband Madhu bid the crowd goodbye and began to make their way out, I set the CD I had burned for Wendy on a gift table, and quietly left the building. I did not want to chance me being contagious as causing any further immune problems for Wendy. As it was, on the last chant before they left, Wendy was clutching her chest and wincing at times from the pain. And yet she was also so happy to be there in that loving cloud of people chanting with her. It was definitely addictive.

I met my husband in the parking lot, and saw Ms. Kim coming towards her car, so I said hello. We talked for a moment about our endometriosis and I told her how I was doing after surgery, and that I’d be back to work on January 24th. I told Ms. Kim that I’ll be adopting her, “nope, I don’t have endo, there’s nothing wrong with me, must be mistaken!” attitude that she has had since her surgery, and we giggled.

Here are some photos from Wendy’s Life Celebration. All photos courtesy Libby Pink:

Madhu and Wendy

Live instruments and chanting for Wendy

Madhu, Wendy & Durga, chanting

Gurumayi Chidvilasananda

We went from the celebration of life ceremony straight to another friend’s birthday party that day.
When we walked in, my friend, yet another sufferer of endometriosis, came to me from across the room and said, “Well hello, floaty!” I told her I’m always amazed at how quickly she can recognise my drugged or emotional state, hehe. I told her about the ceremony we’d just come from, and how I was a bit discombobulated. I sat there next to my friend and just listened to conversation for a bit, until I was ready to fully be present in the room.

During the course of the birthday gathering, which was thankfully mellow, I took another half Tylenol 3 for the pain, and had a forbidden glass of red wine to help further calm myself from all that I had experienced that day.

We got home by midnight, and I’m pretty sure I just went right to bed.

Monday, January 10, 2011

4:19am: “WHY am I awake”.

I wondered if it was because I had drank alcohol throughout the day on Sunday. We had gone wine tasting for my husband’s birthday.

“My legs are bouncing and my brain is spinning and my stomach is gurgling and my heart feels like it is pounding, even though my pulse is normal. I need to be “sleeping with prince valium” I think.” - Monday at 5:11am

I took 1mg Ativan and went back to bed at 5:30am and slept til after 11am. I woke groggy, of course.

So it was Monday, the start of another work week, and I was still home recovering from surgery. The week off was approved long ago, but I felt guilty for being out of work anyway, because I had not been in constant pain for over a week at that point.

Simple movements were still painful, and I was still easily fatigued, so I reluctantly adhered to the 6-week recovery recommendation from my surgeon. I didn’t want to irritate my surgical wounds by going back to work too soon, since preschoolers have no concept of restraint when it comes to their physical activity.

I spent Monday finishing the first semester self review for work, and I emailed it off to my director at school.

Monday night, we went out to dinner with my husband’s father and step-mother. It was quaint. I had more alcohol to drink. Why have I been drinking so much alcohol? I have blatantly violated my post-op rules to myself! Why is my will so weak?

After dinner, my husband, still on a birthday high, wanted to go out to our favourite nightclub. What the heck, we’re both off work, right? Why not? I was zombified but my hubby really wanted to go, and he hadn’t arranged for any other buddies to join him. So I went. I thought, “Hey, at least I can practice my stair climbing!”
I took .5mg Ativan before going out, because my nerves and guilt ramped up. Anytime I’ve done something enjoyable during my time off work for surgery recovery, I have felt guilty about it, as though I’m somehow cheating the system or playing hooky on purpose from work. It’s pretty lame that I am capable of so much guilt.

Once we were at the club, my mood elevated. It was good to be among my people again! I was all dressed up and the music and scenery were sweet heaven on my ears and eyes. Because I had been active and out and about all weekend, I decided to take the plunge that night. I danced!

Of course, I overdid it, and before long, I was holding my stomach and breathing rapidly in panicked fashion because of the abdominal cramps that I’d set off. But I refused to take my medication. I’d been too afraid to take Tylenol 3 since December 27th, when I had the “oh crap I’ve killed my liver” scare.

I drank a lot of water that night, and crawled into bed, whimpering, as soon as we got home.

Sunday, January 9, 2011

It was my husband’s 40th birthday, and he had planned to go to breakfast and then wine tasting all day. I had recently gotten news that my car was leaking brake fluid, so the driving was left up to my husband - unless we rented a car for me to drive. Upon checking, none of the car rental places save for the airport were open on a Sunday. I was ready to pursue this angle, but commented that my husband would have to pay for the rental, since I’ve been out of work for almost a month.

His reply was that if it was okay with me, he’d like to take our chances with my car.

I was NOT happy. I protested. I grumbled. I caved in. I remained NOT HAPPY.

I drove him to breakfast, and two friends joined us. I was very delighted to be able to hold down leaded coffee with cream, a scramble consisting of home fries, tomatoes, spinach, green onions and cow’s milk cheese. I also had some sliced bananas to go with the almond-milk vanilla pudding I’d brought with me in the event that I could not eat anything on the menu. Quite a yummy brekkie I had!

The birthday boy surrounded by friends!

The birthday boy with friend and wife!

We sussed out wine tasting route and caravan plans, and off we went. On our way back to the car, my husband stepped in dog poop. To ensure his entire day was not ruined, I took the job of jovial and optimistic and helpful Wife. Sticking his boot in mud encased the poop for the short term, until he could address the issue later. Disaster averted, but ooops, we lost one of our caravan to impatience. We tried to warn her that the first winery was difficult to get to…

As expected, we and our friend who did follow behind us got to the winery with no sign of friend #2.
Good Wife phoned friend #2, who was in an agitated panic over being lost, and calmly guided her to me as I walked perhaps a third of a mile. Once retrieved, I hopped into her car and guided her to the parking lot, allowing her to vent in her red-headed way that I so often do myself (being a red head).
I was even able to convince her, after a few drinks, to join us in my car for further wine tasting. I got my exercise in for sure - getting into and out of my go-kart of a car all day and walking to and from wineries. I was moderately tired all day. The day was beautifully sunny, even though it was still very cold for me. The wind did not help matters. I do not thrive in 50°F weather. I’m comfortable in upper 60s to low 70s. That’s my range.

We didn’t die that day. No brake failure, which of course made me feel SUPER guilty for bailing on my teacher seminar the day before.

Firsts for Day 23:

• I drove my car all day, getting into and out of car repeatedly.
• My face and neck did not rash out with all the red wine and port I was trying, and I had not taken a Benadryl!

Complications:

• I experienced stabbing, searing bladder pain/urgency whenever my bladder was full. This was possibly due to sulfites in the wines I was tasting.
• I was still experiencing loose stool from the previous day’s coconut oil overdose.
• Since I am no longer in continual pain, I forget that there are things I still cannot do without causing pain; jumping, hip-checking car door or the front door to make sure it’s closed.

What I did for pain management was sit down often. I noticed that when standing at a bar, I stand to one side and sort of lean into the bar. Being post-op, this hurt a lot, and yet I could not stop myself from assuming that stance. So I would find a folding chair and sit down away from the bar. This meant I did not get the full range of wine tasting, but I rarely go for the whole range, anyway. I’m very partial to only certain reds.

January Birthday buddies wine tasting as I sit and rest.

After we got back into town and dropped our friend off at her car, we headed home to drop off some goodies my husband had purchased on our wine tasting trip, and then we went out to dinner. We were starving, and to my happy joy, there was something on the menu that I could eat - baked salmon with mashed potatoes and sautéed spinach! It was divine.

Birthday dinner with hubby at Speisekammer

The day ended on a sour note when we arrived home and I went to use the bathroom and stepped in cat pee. I began the usual line of questioning - was it because we had a friend over on Saturday who owns big dogs? Is my cat’s renal condition worsening? Was he mad at us for being gone for long stretches of time over the weekend? Does he have a bladder infection?
Alas. Only thing to do was to clean up the pee and monitor the cat’s behaviour again. Never a happy job. We’d gone weeks before he started up again. It’s always something different it seems.

Saturday, January 8, 2011

I have lost about 7lbs since surgery, because I was on the BRAT diet for an extended time due to continuing digestive tract issues after surgery. I am convinced these lingering issues are because my mesentery received blunt force trauma at time of surgery.

I think that part of my problem with bending forward and the pain kicking back up is because of the loose flesh from the weight drop. I tried wearing a back support belt in hopes of improving mobility, but all it served to do was irritate my abdominal muscles further.

It does not help the fact that I drank alcohol again the night previous, to the point of getting drunk. I did not black out, but this is the third time in a week that I had consumed alcohol. First it was just a few ounces on New Year’s Eve, then it was a glass and a half of wine and two or three drinks at the Tiki bar for a friend’s birthday, and then last night it was three strong vodka and 7-Up drinks at another friend’s birthday party. If the alcohol isn’t bad enough, I broke my “no corn syrup” rule with the 7-Up.

I was supposed to attend a teacher seminar but I was not feeling up for it, and I did not want to drive my car, because I’d just found out a few days earlier that it was leaking brake fluid. I’d taken the car in to get a low tire looked at - turns out there was a nail in the tire…AGAIN. And then they found the leaking brake fluid.

Anyway, I was not feeling up to going to the teacher event. I was really tired (likely due to being hungover), and I was melancholy because it was the death date of my cousin Andy, who died seven years ago in a fiery crash. I spent the day creating a photo memorial for my cousin, and continuing work on the first semester teacher self-evaluation, which apparently consists of 98735087435023948753 questions.

Diet-wise, I put myself back on the BRAT diet, because of the stupid hangover. Ugh.

Saturday night, my friend Elezar came over - he’d just flown in earlier that day for work, and so I told him to come join us for dinner. When my husband got home from an all-day gaming event with his friends, we all walked over to , where more friends greeted us. We gave my husband a very nice pre-birthday dinner party. To my absolute glee, I was able to stuff my face with sushi and not have any ill consequence. HOORAY for room in the gut finally returning! HOORAY for things healing up inside!

After dinner, we walked up the street to our favourite ice cream joint, and I tested the waters with some cow’s milk ice cream and two lactaid pills. Sadly, I still get stomach gurgles and had to pass a lot of gas. I didn’t have much hope that the lactose intolerance would have gone away with the so-called gastrointestinal reboot from surgery. :/

Once we finished our ice cream, we all parted ways, and I wanted to fall into bed after such a long day, but that was sadly not an option for me. See, it was my husband’s birthday weekend, and he had plans to go to see Rocky Horror Picture Show. Everybody else had bailed…and that left just me. So we went.

We stood in the near freezing cold for over a half an hour to get in the theatre. When I say near freezing cold, I mean it - it’s not just me being a whiny Californian. It was roughly 36°F outside, and I had on a knee-length skirt with stripey tights and Converse shoes, which have no proper insulation on the soles. I swear I thought my feet and toes were going to get frostbitten. They really did sting!

When we finally gained admittance to the theatre, it took another half hour before everything got started and all the show virgins were dealt with.
I was cold, uncomfortable, and tired. But I did remember a few lines and I did laugh several times, so it wasn’t all bad.

I cannot even remember what time we got home - I pretty much dove into bed and slept.

Medication-wise, I do not think I took any meds that day.

Exercise for that day - I will say shivering to death for most of the day counted, cuz seriously, I was starving again after the Rocky Horror show. I’d shivered so much that I’d burnt up all the calories!

Day 20: Thursday, January 6, 2011

I swear, all I wrote on my notes for that day was that I was able to lay on my stomach for half an hour while I napped. I was really tired all day that day. I don’t remember anything else. That’s what happens when I get behind by almost a week!

Day 21: Friday, January 7, 2011
I had lots of energy that day, and used it to get some paperwork done, work on my first semester self-evaluation report, and to get some exercise in.

At 2pm, I climbed the stairs to the split Victorian house we live in. I climbed the stairs three times! The pain hit once I got up to the top of the stairs the third time, so I called it a day for exercise. Sadly, I experienced increased pain and discharge within 10 minutes of stair climbing. :(
I took 600mg Ibuprofen for the pain.

Despite the cramping from the stair climbing, I began feeling guilty for missing work, even though I still had the entire next week slated to be off work. I was itching to get back and I was feeling like I was milking this whole time off thing. So I called my head teacher after she’d gone home for the day, and spoke with her. I also phoned the director on her cell phone. I even spoke with the school secretary. All three of ‘em said I need to take the time off to let my body heal up, and not come back to work too soon and risk injuring my surgical incisions or worse, tearing anything inside.
We agreed that because my return date was the same date that my next period is due, that I would also err on the side of caution and take part of, if not all of that week off, too. That means I’m off work for six weeks instead of four. Of course, six weeks is what my surgeon wanted me off work for, anyway. I am the one who originally thought three to four weeks would be sufficient.

Taking more time off work brings up my old PTSD issue, because after my first surgery, I was fired from a job when they thought I’d be ‘cured’, even though I told them from before surgery, after surgery and each time they brought it up that there is no cure for my condition, and that surgery is not a guarantee for pain relief. All we can ever do is hope for the best. Endometriosis is brutal. It sucks. It’s not fair. IT’S NOT MY FAULT THAT I WAS BORN WITH IT.

I DIDN’T BRING THIS DAMNED DISEASE UPON MYSELF.

Friday night, my husband and I went to a nightclub to celebrate a friend’s birthday. It was the first time I’d set foot inside a nightclub, but not a bar, since surgery. The bar was on January 4 for another friend’s birthday. This night, it would be a full on dance club venue, and I would be tempted to see if my body could dance.
We got there and the music was nothing I’d like to dance to, anyway. My husband took my coat upstairs to coat check, and I hung out with friends and acquaintances until he returned. Because I didn’t really know anyone, naturally I wanted a drink. Old habits never die. I ended up getting pretty drunk that night. This is the third time I’d had alcohol since surgery.
I didn’t make an ass out of myself or anything, but I do feel guilty that I drank so much. I was indeed a bit hungover the next day.

?, My husband, me, Caroline.

Sharon and me

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

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

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.

Friday, December 31, 2010

I had diarrhea first thing in the morning before any food. Hmmm. No further episodes, and I was able to drink some Boost, so I can rule out the Boost as causing my intestinal issues. I guess my bowels are not completely healed from being bumped during surgery, perhaps that’s why I keep having diarrhea.

That morning, my husband made bacon and I very nearly allowed myself to eat some. But then I remembered that I’ve not had meat in 14 days because my intestinal system is still out of sorts since surgery. I don’t eat pork very often, and it’s the hardest meat to return to after one has been meat-free.
I put it in my head vividly the first time I tried eating pork after being pseudo-vegetarian for 6 years, and man, was that painful. So I successfully resisted the bacon. I say pseudo-vegetarian because I was still eating eggs, dairy and fish. In Michigan, I’d be considered vegan, but in California, I was scoffed at every single time I said I was ovo-lacto-pesco-vegetarian.

Anyway…

Firsts for Day 14:

• I was able to swing my right leg up onto my husband’s lap while we’re both sitting…for 30 seconds before my pelvis started hurting again.
• Without thinking, I had been sitting on the floor in front of the heater fan when I got up and slid onto the bed - on my belly like my husband was - to show him something. As soon as I did it, my eyes popped and I exclaimed, “I DIDN’T DIE!” hehe
  But after about 60 seconds, it was too painful to stay on the belly. Just the fact that I did it though was awesome.

• I was able to drink alcohol for the first time since before surgery, and I did not get violently ill, despite my fear (because of the intestinal issues I’m still having). I drank some champagne and also had some macadamia nut liquor.

Limitations:
Laughing while bent over still hurts a lot. I had gotten up off the couch and was still trying to straighten out my body when my husband said something that made me laugh, and I nearly cried from the shooting pain.

Complications:
Well, not really a complication. The belly button began hurting a lot on Day 14. All day long I had moments of intense navel pain, inside radiating to the outside. Looking back through my diary, it’s consistent to my last post-op recovery. I mentioned it on Day 17. Same thing applies with laying on my side - especially my right side - it’s still too painful to do for very long.

The scabs are raised, sensitive to the touch, and the glue plugs are trying to push their way out. Everything looks good, though. Healing is progressing normally.

I spent the day in a depressed funk. I literally just sat around and watched the hours tick by. I took no exercise that day because of the depression. I can’t remember if I had any ibuprofen that day. The weather was nice, but cold. I remarked that Michigan was roughly 10 degrees warmer than us - a heat wave for January. They had weather in the 50s and we we in the 40s.

Day 14 was New Year’s Eve, and we spent the evening at the same friend’s house where we had celebrated Christmas Day. I consumed rice crackers and spinach dip, fine cheese, and some sweets. There were far fewer people this time, and we watched the movie Aliens and enjoyed each others’ conversation. A very nice, low-key evening. Just what the doctor ordered.

When we left after 1am, the rain had started up again.

Monday, December 27, 2010

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

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

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

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

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

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

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

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

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

Sunday, December 26, 2010

This is not how I wanted to end Christmas.

When we got back home from our friend’s house, I was due for another dose of medication. I was hungry again, so I decided to eat a cup of mushroom soup.
With my mushroom soup, I drank a cup of egg nog, because it was Christmas night. I have been tolerating the Boost drinks, which contain cow’s milk, so I figured I’d be able to drink egg nog.

Shortly after ingesting the egg nog, I began to feel queasy and gassy. Not long thereafter, the massive gastrointestinal and pelvic pain started, along with a stinging fullness under the diaphragm. I sat up straight but that did not help. I walked around, but that did not help. Then I grew very weak and started shivering. My feet had been cold all day long, so I decided I would fetch the corn heating pad and put it on my feet. When I stood up off the couch, I nearly fell down. My husband had fallen asleep sitting up on the couch, so he was oblivious to my current situation. I shuffled hunched over, clutching my stomach, and made my way to the bedroom to get the heating pad. I could not find the heating pad where I thought it would be, and that’s when I broke down in choking sobs. This woke my husband, who sleepily came to my aid and asked if I needed anything. I was hysterically sobbing by this point because of the intestinal, stomach and pelvic pain. My husband was able to hear me say through my sobs that I needed the heating pad warmed up and that I wanted it placed on my feet. However, getting me to do anything other than stand hunched over, clutching the bed while I sobbed, was an issue for several minutes.

At 4am, I woke to use the bathroom. The bleeding had ramped up again and caused some pelvic pain. I got back into bed, but could not get comfortable. I tried to turn over on my right side, but it created instant abdominal swelling and pain, which scared the hell out of me.

I got back out of bed and went to the kitchen and made myself some ginger tea. I brought the tea with some Miralax into the bathroom with me. Turns out I did not need to spoon the Miralax into my tea - within moments of sipping just the ginger tea, I was able to have a bowel movement, which was soft.
However, the defecation caused further intestinal and stomach pain, as well as nausea.
I went to wash my hands after using the toilet, and realised that I might vomit at any second. I leaned over the sink, but that caused intense abdominal pain. I grabbed a large plastic bowl, which I keep in the bathroom and use to soak my pads in each month, and placed that into the sink. I took my temperature and it was 98.8°F.

It was around 4:23am, and I picked up the bowl and stood at my full height and let fly. I spent nearly 20 minutes vomiting. It was thick, and contained everything I had eaten in the past 18 hours. I noticed that the vegetables I’d consumed for dinner some 11 hours earlier had not fully digested. Neither had the chocolate mousse I ate roughly 8 hours earlier. I noticed too that the vegetables and the egg pieces from the Thai seafood casserole I’d consumed over 32 hours ago had also not digested.

At this point, I took note of the smell of the vomit, to make sure it did not smell like feces. I was on the verge of freaking out that my intestines had stopped working properly. However, the vomit smelled like vomit…which of course made me want to vomit some more. Alas.

I emptied the bowl carefully into the toilet and cleaned up everything as best I could. I washed out my mouth, cleaned out my nose, took another sip of tea and another sip of water. I took my temperature again. 99.5°F. Well, it’s likely elevated because of all the strain I’d just gone through. I then went to wake my husband.

He asked if I needed anything. I told him no, I just needed to inform him what was going on because I was scared. I told him I’d be spending the rest of the night on the couch because I could not get settled. I assured him I was not running a fever.

I chatted with friends on facebook, which helped a lot with managing my anxiety. Though it is unfortunate that people were awake in their own hells at that same ungodly hour.

Around 6:30am, the bleeding ramped up again. More clotting. Though I was experiencing pelvic pain, there was no way I was gonna try to take a Tylenol 3 or Advil on a stomach which was still so raw from all the puking.

At 6:45am, I was hungry enough to eat a few spoonfuls of cream of rice cereal with a bit of honey and ginger tea stirred in.

I went back to bed, and woke at 10:30am. I got up for the day because the pelvic pain and bleeding were too much to bear. My husband reheated some rice cereal I’d made at 6:30am, and I drank a cup of warm chicken broth with Miralax stirred in. I ate some jello, and then took my first Tylenol 3 in just over 12 hours.

That was around 12:30pm. At 1pm I took a second Tylenol 3, because the first one didn’t register.

Once the second Tylenol 3 kicked in, it enabled me to be dissociated enough from the pain to walk around. Around 2:30pm, I walked laps around the inside of the house. My pace was improving, but after about five minutes, I was totally wiped out.

At 4:30pm, I was still passing clots, and passed the biggest one yet. It was about half inch by half inch. Ugh.

I spent the day on the couch, though I did make myself get up and walk laps around the outside of the house in the afternoon.
Suddenly I was able to walk at a pace! I was amazed at myself.
However, I still fatigued very easily, and was out of breath quickly as well. Still, I did more laps around the inside of the house in the evening, again marveling at how fast my pace had become - in just 24 hours I went from a shuffle to roughly 2 or 3 MPH.

I experienced a migraine by 8pm that did not go away all night. I watched a lot of TV with my husband, and put a heating pad on my head. I refused to just close my eyes and sleep when I probably needed that more than anything.

Around 12:30am, my husband received some bad news, which set him into a really bad emotional funk. He went for a walk and didn’t come home for an hour. When he did come home, he got smashed drunk, even though I made him promise he wouldn’t. He came to bed at dawn, just as I was floundering in bed, trying to get up to use the bathroom. I told him my left arm had gone numb. It was my first night sleeping on my back, and I hadn’t given my head and neck proper pillow elevation. My husband was too drunk to get the hint that I needed his help. He gave me a half cocked smile and a thumbs up when I told him my arm was numb. I got super pissed off but just got myself out of bed and did my business. I stayed on the couch for the rest of the night, I was so mad.

Monday, December 6: intermittent stabby low uterine/bladder pain - late afternoon. I had consumed caffinated tea at lunch time.

Tuesday, December 7: sharp shooting uterine pain. I doubled over twice, took 600mg ibuprofen about 2:30pm. This was after having consumed caffinated tea less than an hour earlier.

Thursday, December 9: Visit to local family doctor to get peace of mind on the heart murmur that I was born with. I was told it’s barely detectable. I passed a cursory health check and she wrote me a note clearing me for surgery in case I needed the note.

Friday, December 10: Mercury went retrograde. UCSF anesthesiology failed to call me like they had planned, to go over surgery details.

Saturday, December 11: all-day teacher seminar. One of the instructors locked her keys in her car. I chose to call my auto insurance to get the keys out, since she said her husband always has handled the insurance stuff, hence she didn’t know it. The benefit to me waiting for a road service dude was that I didn’t have to sit in a room with 65 women and men wearing toxic scents. Well, for the first hour, anyway. Good thing I’d chosen my seat next to the door before everyone else had arrived.
Got home from the seminar, ate dinner, went to bed.

Sunday, December 12: Attended the (Charles) Dickens Christmas Fair with husband - met up with friends there. Pelvic pain and low back pain hit after walking around for 4 hours - I took 600mg Ibuprofen when I went to bed.

Monday, December 13: saw my shrink, discussed fears of surgery. She donated her old shower stool to me from when she’d had surgery (she has Crohn’s Disease). Husband got home from work that evening and informed me that there would be layoffs on Tuesday. He’s survived four or more rounds of layoffs over the last couple of years, but neither of us were optimistic about this one.

Today, Tuesday, December 14: Husband’s work laid him off. Spent much of the day crying. Had to come home from work at 2:30pm because I wasn’t coping. Husband arrived home shortly after me. I had shots of booze waiting for us. He drank two shots of fine whisky, I drank a shot of rum. We spent the afternoon talking about everything financial as related to the surgery. He’s got 4 months severance and health benefits, so he thinks we’ll be alright. He’s got money in checking and savings. I have nothing - I never have anything - I don’t make shit for pay. It all goes to two credit card bills, renter’s insurance, car insurance, earthquake insurance, special-needs groceries, and Internet access.

I spent this evening cleaning the bedroom, as I was scheduled to do before my surgery. We also went grocery shopping. My husband was invited to a friend’s house to drink - I was invited too, but declined because the nesting effect is so strong right now before surgery. And well, I’m not supposed to be drinking alcohol, especially so close to surgery, anyway.

Tomorrow is my last day at work for four to six weeks. I am taking the day before surgery off work as a mental health and preparedness day.

I don’t recall if I went into details before my last surgery - about the emotional aspect of having surgery. There’s a lot of normal irrational fear of dying, fear of something going wrong, fear of nothing being found. My added irrational stress is that we’ve just entered Mercury retrograde in Capricorn on a waxing Moon in Taurus. Also, with the surgery being a week before christmas, if anything goes wrong, my husband is left to mourn every christmas season.
Rationally, scheduling the surgery at this time works out best, because we both have the time off work (holiday shutdown), and because the deductible has already been met, so out-of-pocket cost is about $300 (and it doesn’t roll over to the next year). The surgery works best right now especially, since we don’t know what kind of insurance we’ll have after this. So the timing is shitty, but at the same time for the best.

I just wish I could stop getting myself worked up to near-panic mode.