I Will Not Suffer In Silence

Holy Moly, how did we roll into another year already?!?

Rather than chronicling all the bad stuff, let’s catch you up on some good things:

My uptime (no endo pain) began on December 14, and continued for 15 days!
December 22 was the last day of work for the winter break, and I got to spend good quality time with my husband and our local friends. I don’t normally celebrate winter holidays with family, because I live clear across the country from them, but I did get to talk to my family by phone. I even got to attend a party with my Michigan friends via Skype!

 
Giftmas, as I call it, was happily low-key. I am quite loved by my students and workplace, as there were a great many gift cards, hand-made gifts, and other wonders! From the gift cards, I received a bounty of new books to read. My husband got me a digital EMF detector, because I like to ghost-hunt, and because I’m also sensitive to EMF, so reducing it or avoiding it early and often is key for my well-being!

We spent Dec. 25 at a friend’s house; they are like family, so it is a relaxing, cozy environment. We went dancing on Dec. 26, and for New Year’s Eve, we went to two local bars to celebrate with friends and acquaintances.

 
My husband and I also watched a lot of Rome - an HBO miniseries. Our friend loaned it to us on DVD and we’ve been enjoying the hell out of it. I’m a bit of a history nerd, so we’ve been watching the series with the historical captions function activated. :)

During the endo uptime…actually from day 1 of the endo uptime…the discs in my neck pinched a nerve, and I have been dealing with that since December 14. It was the second time in a month that the discs pinched on a nerve in my neck; the same happened back on November 20, but the pain only lasted 3 days before righting itself. The pain this time was so bad for so long, that I missed 3 days of work. I spent all of winter break moderately to heavily medicated on muscle relaxers, Tylenol 3 and Advil. The doctor wants to do cortisone injections, which I put on hold until I got the results back from allergy patch tests to see if I have a sensitivity to cortisoids (I don’t, according to the patch test). My Ma had a really bad experience with cortisone treatment, and she and I are both highly allergic to penicillin. Because I share similar allergies to hers, I wanted to be tested before undergoing further treatment.

The joke during this time was that although I had pain, it was nothing compared to the endo pain!!

Excerpt from Facebook:
Definition of stubborn: driving self to doctor & errands on Tylenol 3 & Soma (pinched nerve is worse after trying new neck pillow). HEY, this is nothing compared to endometriosis pain! lulz
-December 30, 2011 at 1:05pm

I’d love to have muscle relaxers for each endo flare, too, but A) they’re addictive and B) they make me fat and depressed, so I usually steer clear of muscle relaxers unless the discs act up.

Of course, now that I’m cleared for cortisone injections, my neck decided to ease up! It was the longest period of time that I can recall pinched nerve activity. It was pretty brutal.

On Dec. 26 and Dec. 31, I wore eyeliner when I went out with friends, but for some reason, my eye hated the same eyeliner on NYE. Two days later - that’s today - I developed pink eye. It’s the SIXTH TIME since October 3, 2011 that I’ve had pink eye, all of which started around the time I began using Maybelline Great Lash mascara. I got a chemical and environmental allergy panel done at the end of December, and it did come back as suspect for sensitivity/allergy to cosmetics ingredients. I say suspect, because one doctor said YES it’s positive, and one doctor and one nurse said NO, it’s inconclusive. Damned doctors. No, of course there was no blood test - only skin patch test.

 
So although I’ve been sick with one thing or another throughout December, I am still happy to report 16 days of consecutive uptime between menstrual cycles. There is positivity in there, I swear!

I also went to the dispensary during winter break, which has become famous overnight, as it’s now part of a television series called Weed Wars. I re-signed up for acupuncture, reiki, chiropractic, yoga and the alexander technique. Most of these services are now experiencing a 3 month wait due to recent fame for the dispensary, and of course it’s wall-to-wall people at all hours, now. I’m really happy for the dispensary, and also feeling a bit selfish for wanting services sooner. ;)

I will finish my New Year’s entry with a list of goals for 2012:

• Go sugar-free again.
• Do a better job from abstaining from alcohol again (I know, that few-times-a-week glass of wine is awesome tasting and relaxing, but may not be doing your cramps any good!)
• Be serious about gluten-free baking at home, so I cut down on processed foods.
• Start biking to work every day again.
• Start posting more positive entries - what I can do, as opposed to what my limitations are. It doesn’t have to be one or the other, but just not all negative chronicling all the time.
• See if I can manifest the idea I had recently to gift fellow endo sisters, to share positivity and love.

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

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

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

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

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

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

Popping 800mg Ibuprofen before work

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

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

I went home and slept for 4 hours.

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

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

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

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

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

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

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

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

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

I 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.

My husband dropped me off at the surgeon’s office for my second post-op appointment yesterday on his way to work. I was already on Tylenol 3, as the pain had woken me around 5am.

I was very early to my appointment, so I had brought my laptop and was attempting to do homework. However, the pain ramped up, and it was very difficult to concentrate. As a result, I kept running into technical difficulties, which frustrated me, and likely didn’t help with the pain level. I estimated my pain got to 7.5 again at the surgeon’s office.

Around 10:30am, I made the judgement call to not go in to work. I phoned my workplace and made the arrangements for an afternoon substitute to cover the rest of my shift.

When my appointment time arrived, I was barely able to stand. I was shaking from the pain. I had just taken 600mg of Ibuprofen and half of a Tylenol 3 because I wanted to be coherent throughout the appointment. While my vitals were being taken, the director from where I work phoned and wanted to know what was going on. She said what I expected her and anyone who does not suffer with endo to say:

“But I just saw you yesterday and you were fine!”

Yes. But that was yesterday. The pain hits when it wants to. I was woken from my sleep with the pain.

The director asked me if this was Day 1 of my period. I told her, “Nope, it’s actually Day 3!”

I assured her I had no idea why the pain is now delayed after surgery, why I’m still getting pain at all, and that I was already at my post-op appointment and would be discussing it with my surgeon.

I appreciated that the director said she was concerned, and had wanted to check in with me herself, and that she was thinking of me. Most workplaces wouldn’t do such a thing. I did thank her for calling me like that.

My surgeon’s assistant and surgeon could see immediately how much pain I was in. They both catered to me sincerely, and made sure to bend down and look me in the eyes before speaking. Then they situated themselves in their chairs in the surgeon assistant’s office and we discussed how I’ve been doing since the January post-op appointment.

I noted how my January period had been shorter, but the pain and heavy bleeding was the same.
I noted how my February period had not left me bedridden, and how I did not have debilitating pain until Day 4 of my cycle, but that when the pain did hit, it still was 7.5 on the pain scale, and had it not been for the weekend, I’d have missed work the same as I always have before surgery.
I noted that my March period had also not left me bedridden until Day 3 (the day of this post-op appointment), when the pain reached 8 on the pain scale and woke me from sleep and caused me to cry.

My surgeon went over my surgery results again, saying there wasn’t much endo found this time around (stage I), and that she suspects neuropathy for the lingering pain. She went over the available options again, and said she knows most of them are out of the question for me, but wants to let me know that from current medicine’s standpoint, this is all that is available for me:

• Danazol
• Lupron
• The Pill
• Mirena IUD
• Presacral Neurectomy
• Hysterectomy
• Pain management classes

Out of all of that, the only thing I’m willing consider is the IUD and further pain management classes.
I actually broke down and started crying at this point. I told them that I had seriously tried to do the UCSF campus pain management, but my insurance would not cover it.

I further lamented that our insurance runs out at the end of April, because my husband was laid off in December. I said my workplace offers Kaiser, and I had no idea what to expect with Kaiser.

My surgeon and her assistant comforted me, and assured me they know people in the Kaiser system, and would do some homework for me to help get me transitioned over there in their pain management program.

I am SO fortunate to have these awesome doctors! I do not want to lose them because of insurance limitations!!!!

And now for the rejection list of treatment options:

The Pill has already made me clinically insane on two occasions in my lifetime.

I refuse to go on any hormone, GnRH agonist or male cancer drug to try to treat the endometriosis, because of the side effects of bone loss, male hair growth and lowering of voice, worsening depression and suicidal ideation (if not outright psychosis for me).

My surgeon herself said hysterectomy was useless unless she takes my ovaries, which are the main things that the endo is attacking. But if she takes my ovaries, I have to go on HRT, and that puts me back into the infinite loop of insanity.

Presacral neurectomy had never been mentioned before, and I was told it’s not recommended often at all - it has to be a special case - and my surgeon is starting to think I fit the bill for the special case.
I was told of the most common side effects and I asked smart questions, and I probably won’t go with the neurectomy. I will post more about that in a separate entry.

So again, the only thing I’m willing to consider is the Mirena IUD.

I got the prescription and referral in case I decide to go with the IUD.

When the appointment was over, I phoned my husband and told him I’d be hanging out at a friend’s house until the pain passed, and maybe I’d try public transit to go home.

I then walked to my friend’s apartment nearby and we hung out all day. By hanging out, I mean that we sat at her kitchen table, and spent a lot of time hacking up our lungs (I am still getting over the flu, she is still getting over whooping cough and yes I am immunized).

The pain did pass, and after awhile we left the apartment and got on a bus to go four blocks up hill to a coffee house. The bus ride set off a new round of pain. I thought that standing on the bus would be better than sitting, but nope - doesn’t matter. The muscles used in keeping oneself balanced and upright on a moving bus is enough to aggravate endometriosis pain. This is the second time it has proven true for me.
After we hung out in the coffee house, and my pain was only worsening, I asked if we could go back to my friend’s place. We walked back, since it was downhill, and actually the walking did help the pain a bit!

It wasn’t long after that that my friend had to go to work herself. I thanked her repeatedly for letting me spend the day with her. I spent an hour more at her place, trying to do homework again, and then my husband got off work and came and picked me up.
I thanked my husband profusely for dropping me off and picking me up.

I am very fortunate to have such emotional and physical support right now in my life. I wish all of my endo sisters had this level of support. I do not take it for granted because I have not always had this kind of support myself.

It’s a basic right to be treated humanely when you have a chronic, painful, incurable autoimmune disease, and yet so many are not treated humanely with dignity and respect.

Today is a new day, my pain level is low, and I will try to go in to work.

Today is Day 82 post-op and Day 3 of my period. The quaking pain woke me just before 5am.
I finally crawled out of bed just before 5:30am because the heating pad was not touching the pain. I ate a protein bar and took a Tylenol 3 as I sat on the couch. Sitting upright helped ease the pain, but my left leg went numb. I sincerely think the nerve bundles in my pelvis, which travel down the back of my legs, get compressed when I am sitting, and therefore ease the pain a bit. I have the most benefit when I sit on a hard wooden chair when in menstrual pain. It’s weird that the nerve in my left leg got so compressed that blood flow was cut off - I was just sitting on the couch with my legs up. I’ll take the pins and needles feeling any day over the white hot knife plunging and twisting feeling. Alas, I’m still experiencing the knifing, too.

Let’s see…good news…I had only minor premenstrual pain. My worst pain day was while I did a three mile walk, and I was smack in between menstrual cycles. The day after the walk, I experienced the feeling of surgical adhesions being pulled, especially when I stretched upwards. It’s just a tight feeling, not searing pain or anything, but still concerning. I want things to be loosened up. Gotta remember to start the castor oil packs like my naturopath recommended.

The actual premenstrual pain started two days after the 3 mile walk I did. I had mild, intermittent cramping on March 1, 2 & 3. I began spotting on March 7 in the early afternoon. Later that afternoon, I took 600mg Ibuprofen for mild cramps. The spotting turned to flow the next day, and I required a total of 1,200mg Ibuprofen within an 8-hour span. That was yesterday.

Then I woke this morning just before 5am with the searing pain.

6:30am Update:
My cat Kiki is being a good nurse to me again - he’s laying on my belly, which adds to the weight of the heating pad, which helps ease my pain. Bonus, he’s purring.

6:54am Update:
Mischief Managed. The pain is dissociated enough from the drugs, now. It feels like a fingernail is poking into my pelvis but I’ll take that over the white hot knife stabbing and turning feeling.

7am Update:
Kiki is still crashed out on me - and still purring. It’s disgustingly cute.

7:20am Update:
It’s been an hour and my cat is still purring, still laying on me! Unfortunately, I need to disturb him so I can get ready for the day ahead. I know, call me crazy, but I told work I would be in after my post-op appointment. I refuse to concede defeat, so I will proceed according to plan until my body tells me no effing way. That and if I need additional doses of Tylenol 3, there’s no way I’ll go in to work and be around children on narcotics.

Kiki seems to sense I need to get up, and so he yawned and gently walked off of me. Love my kitteh.

Friday, January 14, 2011

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

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

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

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

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

I hate endometriosis so much.

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

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

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

My husband

Me, sitting straight up cuz of the pain

A view of San Francisco and the smog...

Closer view of San Francisco in the smog

Alameda beach and Bay Farm peninsula in distance

Alameda beach and Bay Farm peninsula in distance

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

UGH.

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

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

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

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

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

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

Thursday, January 13, 2011

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.

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.

Tuesday, January 11, 2011

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.

And then, the old idiom, “when it rains, it pours”. I discovered that my surgeon’s assistant (not Skillern, but Wang, the more polite one) had left a voicemail for me about my December 28 blood work. You know, the blood work results that they didn’t bother to fetch from the front desk at my post op appointment on January 5th. The blood work that I had gotten a call about the day after my blood was drawn, saying everything was fine. That blood work.

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.

Wednesday, January 5, 2011

My husband and I got up at 6:30am for my post-op appointment after another night of 6 or less hours of sleep.

That day, we spent sun up til sun down out of the house.

First, we went to the post-op appointment, where thankfully I did not have to be subjected to a pelvic exam. I was freezing cold, despite wearing a long sleeved shirt, a sweat shirt with a hood, a long skirt and loose-fitting leggings. Nurse Jessie gave me a warm blanket, which helped slightly. Nurse Jessie is always such a sweetheart.
When Dr. Giudice came in, I brought up my concerns about still being quite tired, still having diarrhea every day and sometimes a few times a day, still being tender to the touch on the right side, and the fact that my fingernails were still tinged pink and translucent at the ends.
Dr. G asked if I’d like to get another blood workup done, to which I replied, “didn’t you get the blood work from last week??” The surgeon and her assistant, Dr. Wang, exchanged glances. Dr. Wang stammered out that someone had seen the blood work report and had said everything turned out alright.
My surgeon asked again if I’d like more blood work. I asked her to review the blood work I just did eight days previous, and if she felt that another round was necessary, then I’d do it. Honestly, I was tired of being stuck so much and I knew it was costing me a lot of money on top of the overnight hospital stay. Dr. G said they’d have another look at it, but she was sure I was healing up alright.

After my post-op appointment, we walked in search of breakfast, and settled on a falafel joint near the hospital. This was the second day in a row that I ate hummus without my body complaining! I began thinking that perhaps all I needed was a reboot to the gastrointestinal tract to be able to tolerate foods once again.
I’m hoping I will continue to tolerate anything in the bean family again from here on out.

After breakfast, my husband drove us to the beach, and we watched the Pacific Ocean for awhile.

Fresh from post-op appt and full of breakfast!

Approaching Ocean Beach, SF

Ocean Beach

It was fracking cold!

So glad to be near my precious ocean!

My dear sweet husband, my superhero

Love :)

After walking on the beach and enduring the cold wind for a bit, we checked out the view of the old Sutro Bath ruins, and then we drove back across town to get to my hair appointment. My friend cut my hair - she’s the only person I let touch my hair anymore, and as usual, she did a fabulous job! I am so happy to be rid of all the haystacky old dyed split ends.

At the Sutro bath ruins again, but with new haircut!

Back home after a day out, showing off new hair cut!

Once we were done with the hair appointment, we went next door to a thrift store, and I bought a loose-fitting skirt for work. I’ll be wearing lots of loose fitting skirts in the coming weeks while my belly finishes healing up. This is how it went after the last surgery, too.

My husband began to sugar crash at this point, and I was hungry, too, so we called it a day and made our way back home. I drank a Boost protein drink and we ate some Rice Chex cereal I’d brought along.
Despite being so tired, my husband wanted to take the scenic route home - along the ocean. We visited the view above the Sutro bath ruins again, watched the sun begin to set and several ships sailing in from the horizon towards the golden gate bridge.

It was around this time that I had checked in with my Facebook addiction and found out that my Internet friend and endometriosis sister J had lost her newborn baby. I cried out OH NO! I just sat there with my phone in my hand, limp, staring into my lap. I shed some tears. The last sutro ruins photo of me showing off my new haircut does not have the same intensity smile as my other photos that day, because my friend was weighing so heavily on my mind at that minute. She’d only had her little one for 13 days when the newborn died overnight. Such a tragedy - she tried so hard for that baby.

And that’s how the day ended - on a somber and reflective note. We watched the sun set and the ships sail in as we took the ocean highway route down to the San Mateo bridge, and then back up along the East Bay back to our home.

Firsts for Day 19:

• I was able to stay active and out of the house from sun up til sun down!
• I was able to lay on my right side without thinking about it, and there was no pain.
• I was able to eat hummus (it’s in the bean family) with no food sensitivity repercussions, two days in a row!