I woke with moderate to heavy bleeding and cramps, but by late morning it died down. Alas my life is not stress-free right now. My male cat Kiki keeps soaking the wall by the front door, for the past few days. We clean it up with “Anti-Icky Poo” but it seems to only encourage him to urinate with more volume. We plugged the Feliway back into the wall for round 3 of pheromone therapy and took Kiki to the vet for another eval.
I had moderate to heavy bleeding and cramps ramp up while running cat-related errands around 1pm, lasting til about 3pm. I took half a Tylenol 3 and 400mg Ibuprofen.
By 5pm we got great news that Kiki’s urinalysis came back already, and he has no further descent into renal failure, no elevated white cell count, no diabetes! So health-wise, he’s totally stable. The peeing is behavioural only, which of course is another fun trip. He’s gonna be 15 in March – he’s an old man. We’ll keep doing what we can.
The pain and bleeding had settled down again until I ate mashed potatoes and creamed spinach for dinner at around 6pm; then I got plugged ears, headache, cramps, bleeding once more. I must be allergic to something in the Trader Joe’s freezer creamed spinach. Since allergic reactions are immune responses, it’s no wonder the endometriosis flared again, since it too is an autoimmune disease. I took half a Tylenol 3 and 400mg Ibuprofen at 7pm.
Just before a bowel movement, I took 600mg ibuprofen. The pain was worse right before the bowel movement, and settled down after.
Throughout the day, I was able to be up and out of bed.
That day, my chosen sister’s husband phoned me to tell me that my sister had lost her baby. She was nine weeks pregnant, and less than a week earlier had announced it to everyone. I broke down and cried.
So January 5, January 15 and January 19, people I know lost their babies, all for different health-related reasons, at different stages (two in utero, one newborn). Two are endo sisters. The third is my chosen sister, who does not have endo, but who is RH positive and has had to take RhoGAM shots during each pregnancy. Her doctor assured her the RH factor likely had nothing to do with it, and that she did nothing wrong – just that sometimes development just stops. But of course she’s devastated. Three women I care about have been basket cases this past month for good reason, and then there’s my dying co-worker. I really have cried a lot this month for people.
I worked on homework on Day 33, sitting at the kitchen table on a hard wooden chair. Around
5:40pm, a migraine set in. I am not prone to migraines, but this past week I had been back on narcotics (Tylenol 3) for menstrual pain, so perhaps that is what kicked up the migraine.
I had to stop my homework because I had developed light sensitivity on top of the crushing head pain. A shower did not help. A heating pad to my face and head did not help. Shut-eye in a dark room with a heating pad over my eyes did not help. An endo sister suggested I try Zomig so I looked it up. I took 5-HTP instead, because I had it on hand, and it contains 5-HT. Similar enough, why not?
That damned migraine lasted until I drank caffeinated Irish tea and put a cold pack on my neck (thanks to endo sister Lhia-Clare!). At that point, the migraine downgraded to headache. It was 9:10pm – the migraine had lasted three and a half hours. Ouch.
At 10:30pm my husband massaged me, centering mostly on my upper back while I lay on my stomach.
Forty minutes later, at 11:10pm, I guessed I was having what we call my “last gasp” – a bloody spurt and lots of blood clots and pelvic pain, along with low back pain. I took a whole Tylenol 3 pill, applied multiple heating pads, and went to bed whimpering.
First day of george. Dark brown and thick w/ some debris and clots. Took 1/2 Tylenol 3 and 2 Ibuprofen (400mg). Then an hour later I had to take another 1/2 Tylenol 3. I was stoned for much of the day. Had to lay down for much of the day. I wasn’t totally bedridden, but I was super stoned and tired.
The pain is same as it ever was, but now I’m also experiencing a painful pubic incision; it feels like the bleeding is going to come right through the incision. UGH.
I must stay positive & give it a bit more time – see if things even out.
Day 32 Post-op
Tuesday, January 18, 2011
Second day of george. Woke and took 1/2 Tylenol 3 and 400mg Ibuprofen. Then an hour later I took another 1/2 Tylenol 3. Another stoned day. At least my tolerance levels went way back down, and I have more mobility such that I don’t have to take 2 at a time every three hours like I did after surgery.
Again, the pain is the same as it ever was. The heavy bleeding is the same as it ever was. Today the colour went from dark brown to dark red. It’s still thick. I have more clots today.
At 11am state disability called. Apparently the assistant surgeon (Skillern) screwed up my disability forms! He didn’t say how but the guy sighed a lot. Still no pay for the foreseeable future! Thanks, Dr. Skillern! Hate you! This is the same assistant who was always demeaning and rude. I want to set her car on fire.
Today I did nothing all day. I was fully bedridden all day. I am really not okay with this. I’m so impatient to be healed up and for the surgery to have ‘worked’.
When my husband got home from a day of gaming with friends (he’s still unemployed), he ordered Indian dinner for us. I went to the couch and sat down to eat with my husband (I had Saag Paneer). While eating, my male cat backed up against the wall by the door and peed all over the wall!!! It of course totally ruined our night. Adrenaline kicked in and I got up improperly (not watching my body movements to be gentle on myself), I scooped up the cat, we shoved his face in the urine soaked wall, and I put him in the shower and closed the shower doors. I then cleaned up the piss and went all over the house bending over and stooping down and looking for more piss. There wasn’t any more that we could detect.
I swear it was an hour later when the adrenaline wore off, and I got insanely tired.
But I did not want to be tired, so I stood up and walked around the house. This of course kicked up the cramps. OF COURSE. At that point, I took a full Tylenol 3 pill and back to bed.
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.
Woke up feeling better, though my face was flushed like fever and my temp was 99.3F.
I enjoyed decaf coffee with my breakfast of gluten free waffles and coconut milk ice cream. I had a second breakfast of pan-fried onions, spinach, broccoli and mushrooms with cow’s milk cheese all stuffed into a brown rice tortilla quesadilla.
I was able to accomplish some light house cleaning & purging, and found a pile of socks and other clothes that need darning. I can’t remember what ended up distracting me from the sewing, but other stuff happened that day…
At one point an Internet friend’s comments on my blog led me to worry, so I asked her if she was alright since her surgery. She’s got endo and she’s pregnant. Some women have undergone surgery while pregnant but red flags went off for me over the lack of updates on her site since before surgery. She wrote back to me, confirming the worst – she had to lose the baby during surgery because her own life was in danger. She was about three months pregnant. I actually cried upon receipt of this news. It was the second time in a month that a friend had lost their baby. Earlier in the month, on the same day as my post-op appointment (January 5), a friend had lost her newborn. She thinks it was SIDS. She is still awaiting the autopsy report. I cried for her, also. She had fought so hard to even conceive, and then was in pain and bedridden through most of her pregnancy. Her baby was born tiny and fragile on December 23, 2010, but the hospital sent her home the very next day. I do not know why the hospital did not keep the baby for observation, or send the baby home with a breathing machine, or what. I just don’t have all the info, and I’m feeling a whole lot of IT’S NOT FAIR for my friend. For both of my friends.
Call it oversensitivity since surgery (my ovaries were mucked with, which causes hormonal upset), or call it PMS. Call it whatever – I’m hugely empathetic and emotional right now, and seeing others suffering physically and emotionally just registers so much more intensely than usual for me.
Saturday night, we went dancing. I had been looking forward to it all week, to test out my mobility again, and because I knew there’d be a lot of swirly music to dance to.
Sadly, no photos from that night – I simply forgot. Well, there is my Daily Mugshot photo:
Going out to dance at Solace
I had been melancholy all day for my two friends, and was listening to a lot of Dead Can Dance and music I used to perform ritual to, so that I could send love and positive energy out to my two friends. I wasn’t even sure of my own mobility, but I knew I would at least request and dance to Cantara by Dead Can Dance.
And I did.
By the end of the night, I was on Tylenol 3 and Ibuprofen, but it was worth it. I also got to see another chronically ill friend that night – she has fibromyalgia and was having a low-pain day and also decided to make the most of it and go out that night. She danced, too. :)
Had a sad dream where I was in a stonemason’s shop, searching for my own headstone.
When I woke, I became alert to the fact that my pelvic pain had worsened overnight. The pain did not feel like post-op pain. It felt like my “usual” menstrual pain. My period was due on Monday, but because I had pelvic surgery 28 days ago, who knows…perhaps my period would be early or late. All the organs being fiddled with and such…
I called my surgeon’s office and my family doctor and asked if anyone had gotten my blood test results back, yet. My family doctor was the first one to call back with the info.
I was told that my red blood count was at 33 (low again) and that my liver count was normal at 42. However, my white cell eosinophil count was still high – it was 1,100!
I asked what I do next, and the doctor replied, “you go see your surgeon!” I asked if there was anything I should be doing in the meantime, should I go to E.R.? Am I contagious? The doctor replied she does not get to make recommendations, that this is on my surgeon. She said to just wash my hands thoroughly in case of contagion. So I called and left another message with the surgeon.
Flustered, I sat straight up on the couch to adjust my sitting position, and I screamed because I was hit with a sharp pain at the site of my pubic incision. It was a deep pain, not a surface pain. Maybe the pain was not in the incision itself but the same area where prior to surgery I would say “the pain was low in the uterus near the bladder”.
You know, I had been truly surprised when, right after surgery, my surgeon told me she had not found any endometriosis on the bladder reflection like my previous surgeon in 2007 had. My new surgeon said she found on evidence of endometriosis on or near the bladder or bowels. So all the pain I have is just radiating, then? It feels like it’s bladder pain but it’s really just a large aftershock of pain that had radiated out from the uterus?
I hate endometriosis so much.
After my screaming episode on Day 28 post-op, I whimpered and emotionally caved in to medication. I had barely been taking any medication at all, and had not taken ANY Tylenol 3, since December 27th when I was terrified I’d killed my liver.
But after the screaming pain, I caved in and took 400mg ibuprofen with a half a Tylenol 3.
Shortly thereafter, I went for walk with my husband because I was too stubborn to lay down and submit to the pain. I figured if I walked, that perhaps I would loosen up adhesions and such.
We walked 2 miles and stopped at grocery along the way!
Half-way through the walk, I had to sit down for about 15-20 minutes before hitting the store because the pain had ramped up in my lower back and my pelvis. It had made it difficult to continue putting one foot in front of the other. We sat at a bench and just hung out in the warm sun for a bit.
My husband
Me, sitting straight up cuz of the pain
A view of San Francisco and the smog...
Closer view of San Francisco in the smog
Alameda beach and Bay Farm peninsula in distance
Alameda beach and Bay Farm peninsula in distance
When I felt ready, we continued our walk and went towards the grocery store. As soon as we got to the store, my surgeon’s office called back. It was Dr. Wang, and she insisted that whatever infection is going on with me is NOT directly related to surgery. She suggested allergies or at worst, a parasite infection. She told me they do not specialise in this area, and that my family doctor has to see me. At that point, my family doctor called on the other line, so I took the call. She’d been briefed already and apologised to me for pushing back to the surgeon. I told her it’s okay, I think the surgeon is the one passing the buck, here. The family doctor said I’ll have to submit stool samples to rule out parasites. HOW THE HELL WOULD I HAVE GOTTEN A PARASITE INFECTION.
UGH.
Family doctor told me to stop in on Monday to pick up the collection tubes. I went back into the store to find my husband and finish our shopping.
When we got home, to my surprise, I had increased mobility! We made and ate dinner, but within two hours, the pain returned. I took another 400mg ibuprofen and another half Tylenol 3.
We spent the evening at a friend’s house playing card games – I could not sit in the provided hard chair because I kept getting sharp pelvic pains whenever I laughed or sat up straight. I was given a plush computer chair to sit in and that helped a bit, though I still had to get up and stand or walk around every half hour or less.
After game night, we came home, and I crawled into bed.
Firsts for today: Walked two miles despite having premenstrual pelvic and low back pain.
Complications: Sharp pains beginning in afternoon and lasting til evening whenever I laughed or sat upright.
Every muscle in my stomach felt pulled that day, probably from all the exercise I had since Monday night. I went dancing Monday, I lifted a 19lb box Tuesday, and did leg lifts Tuesday night.
Because of the pain I was in on Wednesday, I barely took any exercise. My left leg had increasing calf pain all day, too. It felt like I pulled a muscle. I realised after analysing it for hours that my calf muscle was strained because while sitting at the kitchen table doing homework the day before, I had been bouncing my leg the entire time.
I spent most of Wednesday in a bad mood. I was pretty sure it was PMS at that point.
On the good news front, I finally got my patient records in the mail. The bad news is that it did not include the original copy of my disability paperwork. I was very angry. I wrestled with the phone tree for Mt. Zion patient records, was transferred over to UCSF patient records, who said they cannot send originals of anything once it goes into patient file, and they referred me back to the assistant surgeon (Dr. Skillern) who put it in my file instead of giving the disability paperwork back to me in the first place. Oh and I love how she blamed my husband for not getting the paperwork while we were in the hospital:
“I spoke with Dr. Skillern regarding your disability form and she said she filled it out and file it in your hospital chart. Per Dr. Skillern she mentioned this to your husband after the surgery. I thought she filed it in your chart for our clinic. This means that you form is in the hospital medical records department. Either you will request a copy of the form from UCSF medical records department or you can send us another blank form and I will have Dr. Skillern fill it out.” (email correspondence w/ one of the nurses on December 23, 2010).
You know, obviously it’s my husband’s fault, because he did not have enough on his plate already with his wife having gone through surgery with complications, having to be admitted overnight, and he had perhaps 2 hours sleep the night before my surgery due to nerves, and he had to drive home and come back the next day, again on very little sleep, with the urgent notice that my red blood cell count had taken a dive and that I might need blood transfusions or more surgery. CLEARLY it is his fault for not recalling that Dr. Skillern mentioned to him that my disability paperwork was in my patient file and to retrieve it before we left the hospital. OBVIOUSLY Dr. Skillern was far too busy to just set the fracking paperwork on the table next to my hospital bed, and instead had to go the long way around, like she always does.
Had I mentioned how angry I was on Day 27 post-op?
After spending an hour going through phone trees and email with the UCSF nurses, I finally just made copies of the copies so that I had something for my home file. Then my husband drove me to the nearest disability office. To our utter joy and amazement, there was no one else in that office, and someone took my paperwork and said that copies were just fine and everything was in order! I was told that I should be hearing back in a week or so!
Spirits lifted a bit, I did a little bit of homework at the end of the night.
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.
I completely exhausted myself between Friday and Monday, and this was evident because on Tuesday, I slept all day. During my waking moments, I was depressed, because I’d discovered that my cat was still peeing on stuff. On Sunday, he’d peed on the bathroom rug. Sometime between Monday and Tuesday, he peed on my homework on the kitchen table. The last time he did this, I had to tear apart my entire Mathematics album and reassemble it (thank [insert deity here] for page protectors, but my handwritten notes were ruined, because they were the only things not in plastic page protectors).
Upon seeing that my cat had peed on my homework again, I broke down sobbing.
Thankfully, upon closer inspection, he’d only gotten the box of page protectors and the outside of my Language Arts album. I threw away some plastic pages and cleaned up the outside of the album, and cleared off and disinfected the table, all while sobbing. My husband stood near me, arm around my shoulders, the whole time. He had asked if he could help and I let out a muffled ‘no’ and continued cleaning. He knows me well enough to know that he was giving me all the support I needed by just being there with his arm around me.
I called the surgeon’s office back and played phone tag, and fretted. Finally, Dr. Wang called back again.
Turns out that AFTER my post-op visit on January 5, my surgeon decided to actually go and look at the report herself, rather than rely on the “ummm” and “uhhh” of the assistants and front desk people. Good call on her part – turns out they had missed something: abnormally large white blood cell count (eosinophils).
They had kept telling me everything was normal when I insisted it was not – even at my post-op appointment on January 5. HAH. This did NOT help my emotional state that day.
I quickly made an appointment with my local doctor as instructed by Dr. Wang. I was able to score an appointment for the next day, but less than 24 hours was even too long for me to wait at that point.
That day, I took 1mg Ativan, but still refused to take pain meds, even though my emotional meltdown set off instant cramps and fatigue. I can’t say enough how much stress and anxiety bring on and worsen endometriosis pain. Even though I have relaxation techniques and books and podcasts and MP3s on stress management, I still struggle with becoming master of my emotions. Here’s a good article from an author I trust.
Complaints for Day 25:
My belly button still hurts.
Firsts for Day 25:
Did 10 slow stomach crunches and 10 sit-ups before bedtime:
Lying on my back, I put my legs in the air, bent at the knee. My hands rested on the sides of my body. I held the pose for as long as I could, and then I slowly extended my legs forward and back again, 10 times.
Sit-ups: I laid on my back with my legs bent, feet flat on the floor. I rested my hands on my thighs and sat up slowly until my hands touched my knees. Note: do not sit all the way up.
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.
