Second Laparoscopy: Day 17 post-op

Monday, January 3, 2011

I slept in again, and started to feel bad about it. The rest of my friends were returning to work after winter holiday, and I was still off work, recovering from surgery. I began to feel guilty – I should be at work, too. My mind felt ready to be at work – it was just my body that wasn’t cooperating.

I walked, stretched, filed paperwork, washed a few dishes that day.

And also, my Firsts for Day 17:

  • I was able to lay on my left side for most of the night.
  • I laid on my belly for about 7 minutes (to receive a massage).
  • I drove my car for the first time since before surgery. I drove around town, which has a 25 M.P.H. speed limit. Even so, the pain and stiffness returned, landing me at a 5 on the pain scale. I took 600mg ibuprofen for the pain.
  • I was able to eat three orders of sushi rolls!! This is huge news! I’ve not been able to eat too much at a time without getting diarrhea or horrible pains under the diaphragm. This was the first time I’ve really tucked in! Woohoo!

 

Last night, my husband’s friend flew in for a job interview, so we and another friend drove down to the South Bay to hang out for the evening.

R, J & B at sushi dinner

R, J & B at sushi dinner

Just chillin in the hotel room

Just chillin in the hotel room


 

It was a good time. I giggled a lot, and didn’t die. I guess I must be healing well!

Hopefully the last of it

I did wake up relatively pain-free, but not without having had a bit of a rough night.

I went to bed by 9pm because of the pain and immense fatigue. My husband came to bed sometime before midnight. I know because not long after, we were awakened by the phone ringing. It was my neighbor – her parrot had just died, and she was sobbing hysterically.

I got dressed and walked to the back of the house – she lives in the smallest unit in the converted Victorian. I spent the next hour with her – holding her, hugging her, talking with her, listening to her. I cried a lot, too. I have lost pets dear to me before, so I knew the pain. And I liked her parrot – he was quite a character. He was 20 years old. She said he hopped out of his cage and started making weird sounds, and flapped as he staggered across the room to be with his human. She put him up on her shoulder and I guess he tried to settle, and calmed for a moment, but got all twitchy again, then got weaker and weaker, and just fell into her hands and died.

Chili 1990 ~ 2010

Chili 1990 ~ 2010


My husband had to be up at 5am to drive an hour to the other work location for an early morning meeting, so I knew that me getting up at midnight and being gone for an hour like that was sure to disturb his sleep. It’s two hours earlier than he usually has to get up, so he was already not sleeping well to begin with. The fact that he had to get up an hour and a half before my alarm also meant that my disruption in sleep would greatly affect me.

When my alarm went off, I snoozed and snoozed til the last possible minute, but of course it’s fretful sleep when you hit snooze repeatedly. I was able to shower and get to work on time, though. I was thankful that the pain had passed.

However, by the time I got to work, I was already hypoglycemic and achey. The weird thing is that they did not expect me in today or tomorrow! It was written on the calendar and everything. The secretary was pretty confused, and said I’m always good about letting everyone know when I won’t be in, so how she wrote me off work like that was weird. I half jokingly told her not to worry, I might not last the day, anyway.

And so it was. The pain set in by about 10:45am, and the bleeding returned. It was all the stooping and bending, all the sitting down on the hard floor and getting back up again that did me in. But that’s what a preschool teacher does – a lot of moving around like that.

I was hoping that last night’s massive pain and bleeding had been “the last gasp” as my husband calls it, but I guess not. Although, the bleeding did not return with force today. It was just a bit of spotting. The pelvic pain was the thing that returned with force. I asked a fellow assistant teacher if I could do the snack cleanup duty instead of group time overview (because it meant more stooping and bending and getting up and down).

Even washing up some dishes and loading the dishwasher was too much for me. As I was drying the food containers a parent had brought, one of my head teachers approached me and told me it was the first day of her period, and her cramps were really bad, so she was going home. I wished her well and told her I hoped the pain would not be too bad for too long.

I returned to class and was on my way to get my water bottle when my other head teacher looked at me and said, “are you in pain?” I stopped and blinked. I thought I had masked it well enough today, cuz I was trying to stay up and about instead of giving in to the pain. I sighed and said I was just about to take some Advil, that the cramps had ramped up again.
The teacher told me she had worked with her friend’s sister in this school before, and one day she passed out from the pain. My eyes grew wide. I reassured her that I have never passed out from the pain, and that I would go home if the pain got too bad.

She replied, “You don’t look good. You should go home. We’ll be okay.”

So I took 600mg Advil and wrapped up the snack cleanup that hadn’t been fully finished because the newest assistant seemed a bit overwhelmed today. It’s okay – she’s doing an awesome job. Duties just sometimes get behind the pace of the schedule. We go with it and try to keep the flow. She provided overview with the children at group time to be there for another assistant teacher who was running the group, and I cleaned up and it worked out.
I made sure the afternoon supervisor would be okay without me, and then I saw the children out to the lunch tables at 11:30am with the rest of the lunch staff, and then I went home for the day.

The other weird thing that happened was when I phoned my husband to tell him I came home early. He asked, “Came home? From where?”

I blinked at the phone.

“Uh…from work. I had to work today. It’s Thursday.”

He replied that he didn’t know I was well enough to return to work at all, after having seen the condition I was in last night when he got home from work. I giggled – he’s right, how could he have known my plans if I’d not told him, “tomorrow I think I’ll be okay enough to return to work.”

So I told him how I had felt better and how after a few hours, the pain returned, like it does.

He told me to take it easy for the rest of the day. Sweet man.

I got home and ate my leftover Indian food (Saag Paneer and rice), and felt the crushing weight of fatigue upon me. But my mind would not let me sleep. I’m 15 days from surgery and all I can think about is getting things in order before the downtime.

It didn’t help that I got restless by being home all afternoon.

The carpets were filthy.

I vacuumed.

I COULDN’T HELP IT!

I wanted to clean out the fridge. I wanted to clean the bathroom walls. But I didn’t, because I knew it would make the pain so much worse. As it was, the vacuuming brought on a new round of cramps. I knew it would, and I did it anyway, because I was antsy and had cabin fever. The fact that it’s raining again doesn’t help the pelvic pain or my joint pain, either. Bleh. And I’ve been freezing all day. I had the furnace on and the space heater. Stupid hormonal whack. Stupid illness.

That’s how it goes.

I crawled into bed at 8pm, and texted my husband. He was exhausted from his long work day, and was now on his way to band practice.

Aww man! I forgot he had band practice tonight.

I’d been waiting for him to get home so he could declare how exhausted he was and just order us some food.

Poop.

So out of bed I got and made some gluten-free mac ‘n cheese with canned tuna.

It’s the same thing I made for lunch yesterday. Le sigh.

trader-joes-gluten-free-rice-pasta-cheddar

 

But I’m being responsible and eating what’s in the house, instead of ordering out like I did last night. And besides, the bills need to be paid up so that I don’t worry about ’em during recovery from my surgery. The more bills and such I cover right now, the easier the financial burden will be on my husband when he has to support me for a couple of months while I get back on my feet financially after having been off work for a month. I’ve been doubling up payments on one of my credit cards, too. Paying bills online today was one of the things I was able to check off my pre-surgery To Do list. The other thing I checked off the list was scheduling the ECG. I had no idea my family doctor could do that in office! Oh. Crap. Gotta make sure the insurance will cover it at that office, though.

Anyway, so here we are at 9:30pm. I’ve taken a total of 600mg Advil and 2 Tylenol 3 half pills today. And actually, I might take another half pill soon, because the low and mid back pain is increasing like it did last night before bed. :(
I need to get out of bed one last time to put away the uneaten portion of the mac ‘n cheese for tomorrow’s lunch.

Here I go.

Another pain status update

Thursday was a pain-free day! Yay!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

baycam11272010

 

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

Two things accomplished despite the pain

This morning my husband confirmed that he would be late to work so that he could take me to the DMV to renew my license. I hopped in the shower and made myself all pretty and off we went. We made it in time and only had to wait 15 minutes, thanks to me having made an appointment. That standing around though, first for the fee paying for the new license, and second for the photo, caused a lot of pelvic pain. There literally was nowhere to sit. I was on 1 Soma and a half a Tylenol 3 plus 400mg Advil, so I was sleepy and yet still in pain. The trapped nerve in the neck was behaving, at least.
Once I got through everything, I was told my new license will be in the mail in 2-4 weeks.

My husband had parked a few blocks away because the DMV was so packed – I overheard a woman telling someone that the Hayward DMV had closed down, that’s why the Fremont DMV, usually a quicker adventure, was now looking like Oakland (packed out the door all day long. So my husband had parked a few blocks away. I shuffled along and my husband was impatient and worrying about getting to work, so I told him to go on ahead of me. We agreed to meet at the half-way point – at the Smog Station across the street. I went in and used the restroom, and met my husband outside. We drove back home and on the way, I took another half Tylenol 3 for the pain.

The bleeding had subsided ever since my shower this morning, which I was grateful for, but of course the continuing pain let me know that more gushing will be on the way.

I got home and rested a bit, then got a burst of energy, so I tackled the pile of homework still waiting to be finished. I got five illustrations done! I hope to finish off Binder #4 tonight for my Language Arts class, and do some more work on the Rationale paper for that class. Any homework I have left to do is LONG overdue, but I will eventually finish it and hand it in, and will still receive a grade. I’ve not stopped being anxious and guilty about it but I’ve stopped freaking out over it. I come to accept the fact that I’ll still be proud of myself no matter when I turn the homework in, and that all of their threats to have people turn in homework in a 2 week turnaround were mostly empty threats poorly designed to try to motivate people through fear. Which is hilarious, considering the book Positive Discipline, which is so encouraged throughout our Teacher Practicum seminars. But who says anyone ever listens to their own advice or reason. This training center certainly doesn’t.

Around 1:50pm, I re-upped my medication and took 1 Soma and 400mg Advil. I have not needed the Tylenol 3 since this morning, because the cramps abated, and the bleeding still had not resumed.

The Soma made me sleepy, and around 3pm or so, I took a nap in my own bed. I slept for nearly two hours, and woke from some crazy dreams, which I’m sure were medication-induced. I can’t even remember them, now. I think it had to do with a classroom.
I noticed that the bleeding had resumed, but only by a tiny amount, and I was still free of cramps. The trapped nerve in the neck however was agitated again, but it wasn’t time to take meds, yet.

I made myself some late lunch just after 5:30pm, and have been on the couch ever since, just resting. I am groggy from the Soma. I am still feeling really guilty for having taken today off of work, even though I have been drugged all day and know that without the drugs, I’d be in a lot of pain. The early part of the day, I had pelvic pain despite no bleeding. So it’s still valid and it’s still reasonable that I called off for another day.

What is unreasonable for me is that my body chose to have the calm between the storm in the middle of the day, which means the Last Gasp might not happen until tomorrow. This means I stress out, wondering if I’ll have to come home sick from work tomorrow, too. FOUR DAYS! I have NEVER taken four days off work from this job because of the endometriosis. Ugh. Is it because of the new endo growth? This is month two of really heavy bleeding. Is it due to perimenopause? Is it because of leftover stress from the summer training classes? Four Days!!! I don’t even usually take THREE DAYS off in a row like this. It looks so very bad on the résumé, so to speak, and makes me consider whether I should file for disability again. Bah. I don’t miss 14+ days of work in a month, so there’s no sense in filing. They will reject me again. I really hope this job does not fire me for my increased absences. I cannot afford surgery until spring or summer, so absences will happen every month. :(

Something else I accomplished today – I checked back through my diary to see when the last time was that I took Soma when also dealing with endometriosis cramps, and it seems like it was in 2007.
I also found out from my own Things I’ve Tried page that “Soma dissociates me so nicely from the pain but leaves me moderately to severely depressed after taking it for even one day, contributes vastly to weight gain“.

What was I saying recently about how some things are best forgotten? In this case, it would have done me good NOT to forget. Now I have to monitor myself for further depression. I have already been gaining weight – I’ve gained 6lbs in the past month, and my whole body is feeling it. I don’t know if you can relate but I swear, my FAT hurts in my hips and arse. No joke.

Let’s hope I can undo the trapped nerve in the next couple of days, so I can get off the Soma again. But DAMMIT, it DOES dissociate me so very nicely from the endo pain. Blah.

Details on the pain level and medication doses

Lots of TMI.

My period arrived on time yesterday (Monday) morning. I called in sick to work because I expected the pain to ramp up. When the pain did not ramp up, I felt guilty and set to housework. By 11am, the pain and bleeding came full force, and I spent the rest of the day on the couch on Tylenol 3 and Advil gel-caps.

I cannot remember how much Tylenol 3 I went through, yesterday. I want to say it was 2.5 pills. I went through 1,600mg Advil yesterday.

The pain was at times very sharp, and most of the time it was burning and gnawing. The pain was centered in the uterus and the right ovary, though sometimes the left ovary chimed in. I would wager that my pain averaged a 7 to 7.5 on the pain scale yesterday.

This morning, I shifted position in bed and a large gush literally squirted out of me, immediately soaking through everything. I scrambled out of bed before the bedsheets could be affected. The thick pad and liner, my underwear, and my pajama bottoms took all the damage.

Today was very heavy all day, tapering slightly in the evening, and now after 11pm, I am back to another surge – my body is trying to pass a clot at the moment. OW.

I also woke with a trapped nerve, because I slept on one instead of two pillows last night. The reason I slept on one pillow is that the Tylenol 3 makes it hard for me to breathe sometimes, and I felt like my chin was trying to touch my chest with two pillows. And on Sunday, my Alexander Technique instructor was telling us not to walk with our heads down, since a human head weighs as much as 20lbs and can hurt the spine if drawn forward all the time. So even while prone, I thought about this, and put my head back a bit on just one pillow so it would not be tilting forward.
That was an unfortunate mistake on my part, because I have bulging disks in my neck from a car accident many years ago, and anytime my head leans back even the slightest bit for too long, it impinges upon the nerves. So I woke with a trapped nerve.

As I wrote earlier, I wanted my husband to stay home with me today but he wouldn’t. I texted a neighbor and didn’t hear back. I went and knocked on their door but they didn’t answer. As I was about to walk to my car, dreading the drive, another neighbor pulled up to say hi on her way to the gym. I hitched a ride to the doctor with her, and got prescribed muscle relaxers. I took a whole Tylenol 3 and shuffled home because I did not have exact change for the bus and can never remember how much it is, anyway. It is a 0.4 mile walk, but a bit harrowing when in pelvic pain and trapped nerve pain in the neck/shoulder. I got home and the other neighbors returned my call and offered to take my muscle relaxer prescription to the pharmacy.

Due to snafu between doctor and pharmacy, my script was not filled til 2pm, so I was in burning nerve pain the entire time (in the neck/shoulder/arm), on top of the endometriosis pain.

I had by this time convinced my husband to come home early from work, and he picked up the muscle relaxers for me. I took one on the way to my psychiatrist appointment, which my husband dropped me off for. I was sedated and loopy throughout the appointment, but had notes ready and got out everything I needed to for the psychiatrist to make a decision.

She does not think I fit easily into the bi-polar category, but agrees I have some sort of mood disorder and wants to start me on Abilify right away. I told her I would research it, first.
This jives a bit with my psychologist – she IS convinced I have “bi-polar 1” and wants me on Lamictal right away. I did not share this with the psychiatrist – I want her to see me a few times before I let the two start talking to each other.

I was miserable today, between the two painful conditions. I estimate the pain hovered at 8 all day. Even right now as I type, I am waiting for the latest dose of Tylenol 3 to kick in, and I’m whimpering in pain.

I have had 2 Soma pills today and I think I took 1,200mg Advil. I think I took 3.5 Tylenol 3 pills today. I didn’t take more than that for sure. I’ve been on heating pads all day. I’ve been laying around uncomfortably all day. At least the trapped nerve and the endo pain take turns. Right now the neck/shoulder/arm feels alright but the pelvic pain is hateful. Earlier I was able to nap a bit in a reclined position on the couch, but then my neck and shoulder started hurting again, with pain radiating down my arm again. So I got up and had some energy for a bit – which only means I could be in a sitting position for longer than 4 minutes – walking around still sets off more pelvic pain.

Now it’s back to pelvic pain. I’m going to warm the rice and corn heating pads for the 987543208573246th time today and try to go lay in bed. Here’s hoping I can sleep through the night.

I have called off work again tomorrow – I just know my body is not done with the heavy bleeding and pain, yet. I have a DMV appointment in the morning, anyway which cannot be cancelled. They sent me notice a month before my license was to expire, and the soonest I could get in for an appointment was two days before my friggin birthday. How lame. I have heard horror stories of people without appointments waiting 5+ hours to be seen at the DMV, and I’m in no condition to do that right now. So I kept the appointment and felt extremely guilty for taking time off work, but now it looks like the pain will keep me home, anyway.

My husband has developed some compassion and said he’ll see how I’m doing in the morning and may drive me to the DMV appointment. How nice of him.

My brain is spinning

The right side ovarian pain has been intermittent and mild throughout today as well.
This morning I had my follow-up appointment with Dr. Giudice, my ‘new’ GYN. She had a new nurse who wanted to make sure she had my history correct, so we went over the notes. I love how the nurses and doctors prepare themselves before speaking with the patients, it’s pretty awesome. Even if they only just read my history a few minutes before entering the room, they do a great job of putting off like they’d spent lunch hour or the night before poring over my file. It makes me feel respected and valued – imagine that! So far, Dr. Giudice’s office is three and a half to four star in my book (Not five star? Communication issues sometimes are the problem).

This morning we caught up to the present pain, and the nurse typed up everything for Dr. Giudice:

“38 year old with history of endometriosis and chronic pelvic pain presents for follow-up. worried about growth of endometrioma. increasing pain on Right ovary intermittent, stabbing. walking, heating pad not work. severe dysmenorrhea is stable, but patient reports worsening debilitating pain 1 week before her period which is new (similar to pre-surgery 2007). tylenol #3 and ibuprofen not work. during menses – bedridden, around-the-clock (ATC) meds. pain currently Right side, but can be on both sides.

2 visits with UCSF pain management psychologist – insurance stopped covering. sees psychiatrist (new appt next week), psychologist, alexander technique pain management (less movement)

4/21/10 – patient referred for pelvic MRI to rule out adenomyosis. Referrals for chronic pain clinic and pelvic physical therapy were given. She declined Mirena IUD, Lupron, presacral neurectomy.

6/23/10 – patient returned to review MRI. MRI revealed 1.4cm Left ovary endometrioma vs. hemorrhagic cyst, no evidence of adenomyosis. patient declined GABA cream hormonal treatment, or antidepressants. Patient is interested in surgical resection of endometriosis. The decision was made to defer surgical intervention.

Since then, she has called the clinic several times regarding nausea (7/2), passage of thin grey tissue during menses (7/26), and a heavier than usual menses (8/20). Her pain is currently controlled with Tylenol with codeine and Ibuprofen.”

That’s a pretty good history – I didn’t expect them to have preserved notes on my calls to their office! So cool. The only thing I take issue with is the “GABA cream” – perhaps the nurse got it wrong, I dunno. But during my visit to the pain management director in May, and my visit to Dr. Giudice in June, the word “cream” was not used to describe Gabapentin. It was called Neurontin and Gabapentin interchangeably, and was told to me that it’s usually prescribed as a seizure medication.

That aside, everything was ok with the notes/history. Dr. Giudice came in and we talked about my current pain, went over the available treatments again, and it was suggested I try an aromatase inhibitor. Dr. Giudice was under the impression that I was offered and had refused this treatment before. I find no reference to it in this journal, and I knew in my head that I had not had the conversation with her, so I asked her to expound. She told me that a lower dose would be used for me than for breast cancer and ovarian cancer patients, and that she’d have to add a progestin sidecar so that my ovaries won’t go into overproduction or further estrogen dominance.
I might have been sold but for the fact that progestin was mentioned. I told her why I’m reluctant to even use the Mirena IUD, which contains progestin, and told her that on Levonorgestrel, I get severely depressed. Granted, the dosage is much higher in what I’ve taken (Plan B) than in the Mirena IUD (controlled release), but I don’t want to take the chance after what’s happened to me in the past.

I told Dr. Giudice that I’m seeing a psychologist who strongly suggests I be put on mood stabilisers, and I will be seeing a psychiatrist next week who will see if that’s really the case. After I’m put on psych meds, I told Dr. Giudice, then I might consider the aromatase therapy. She was totally satisfied with my idea/request.

Next, we went to the exam room, and I underwent my second transvaginal ultrasound of the year. I know the routine now so we got right to it. I prepared myself a little better this time by taking 1mg Ativan before my doctor visit, and even though I still experienced pain from the procedure, I was a bit more calm this time around, and not traumatised at all.

The ultrasound revealed bad news: I now have endometriomas on BOTH ovaries, and I still have the damned free fluid (which means it’s likely pools of blood from the endometriomas) around the ovaries. My left ovary has also become reattached to my uterus…all within five months, since my last ultrasound and MRI scans.

So begins the Twenty Questions:
Did the stress of going to school over the summer hasten my illness? Or is it just progressing this way on its own? Is it my diet? Is it not enough exercise? Or is it just the illness, no matter what I do or don’t do?

I suffer emotionally with the 20+ questions, and I suffer physically with the pain.

After the ultrasound, Dr. Giudice made her recommendation – she wants to schedule me for a laparoscopy.

I asked her what changed her mind between her decision a few months ago NOT to give me surgery, and today. She said that there’s obviously more growth going on, and she does not doubt for an instant the pain I am in, based upon what she saw on the ultrasound in April and then today. She’s seeing the growth in progress. She asked me how soon I could schedule surgery. I told her next summer would be best, since I could take part of the summer off to recover. She asked if I could do end of December. I told her I’d have to check with my school, but I’d need more than 10 days this time around for recovery, since I’m not at a desk job like last time around. This time around, I’m chasing after preschoolers all day.

I asked her, if she has to take at least one ovary, what would that mean for me – what adjustments would my body have to make? She looked at me funny and said that apart from the endometriosis and a routine biopsy at time of surgery, she wouldn’t think of taking my ovaries. She said it’s always a risk to do so, since the ovaries, fallopian tubes and uterus are all so closely connected via ligaments and such to the bladder and bowels. It’s tricky stuff, she said.
Hah. That’s quite a change from my visit to Kate O’Hanlan a year ago!

Dr. Giudice told me to think about scheduling surgery soon, and said she’ll have her scheduler give me a call.

I got copies of the ultrasound and today’s notes, and then called my husband and told him the bad news.

We were JUST talking over the weekend about going to Yosemite for Christmas break, and now I am pressured to have surgery at that time. :(

I told my husband we’ll have to have a big talk about finances, and that likely we won’t be able to swing December, anyway, since we’re still clawing our way through debt incurred this summer when I went to a teacher training course.

If I have the surgery on summer break, then I can go to Yosemite in December, and I can fly to Michigan for my promised annual return in the summer, after I recover for a month and a half after surgery. That is, I can have my cake and eat it, too.

Then the doctor asked what most doctors have asked me, “How long are you willing to suffer with the pain?” i.e. “do you LIKE being in pain? Get in the surgery room now!”

It’s not that simple, dammit!! I can’t just drop everything and run to surgery. The last surgery, under a different insurance, still cost me $1,500 out of pocket in co-pay stuff, plus eleven days without a paycheck. I have a different insurance, and I make $8/hr LESS than I did last time I had surgery. I have to check with this insurance, and I have to pay back existing medical bills and other bills FIRST, and also talk to my husband to see how he’s catching up financially, before we jump into the whole surgery in December thing.

Blah.

When I got home, I reviewed the ultrasound paperwork, and compared today’s imaging and round of notes to the last ultrasound, as well as to the MRI.
I found that things got really spinny at that point – it seems that all of us – me and the doctors – have been referring casually to both ovaries as the one which has the endometrioma on it.

In January, March and April, 2010, I experienced debilitating RIGHT side ovarian pain, per my iCal. In mid-March and again in mid-April, it felt like I was experiencing an ovarian cyst rupture on the RIGHT side, I was in so much pain.

On April 21, 2010, the ultrasound revealed the following: Possible endometrioma on the RIGHT ovary, measuring 0.9cm. Nothing on the left ovary.

On May 27, 2010, I went for an MRI, which revealed the following: The RIGHT ovary is NORMAL.
The LEFT ovary has a 1.4cm mass, “which, given the clinical history, likely represents an endometrioma.”

I didn’t pay attention to left or right. I only thought OH MY GOD THE ENDOMETRIOMA IS CONFIRMED AND IT’S GROWING.

In reality, what happened was that Dr. Giudice found an endometrioma on my RIGHT ovary, and the MRI people found an endometrioma on my LEFT ovary. One didn’t just pop out overnight in time for today’s ultrasound.

So in reality, I have had two endometriomas – one on each ovary – for gods know how many months.

The endometrioma on the LEFT ovary was 1.4cm as of May 27, 2010 at the MRI visit, and on September 8, 2010, that endometrioma was visualised on the ultrasound to measure 1×1.1cm. So it is shrinking ever so slightly…possibly.

The endometrioma on the RIGHT ovary was 0.9cm on April 21, 2010 as visualised on the ultrasound, and on September 8, 2010, the endometrioma on the RIGHT ovary grew to 1x1cm, also as visualised on the ultrasound. The MRI did not find an endometrioma on the RIGHT ovary back on May 27, 2010.

I asked my GYN to confirm the size of each of my ovaries – I guessed 3cm. She said just under 3cm. So a 1cm endometrioma is eating a third of each of my ovaries. She didn’t see it that way – she said that the endometriomas are small. But in relation to the total size of the ovary, I’d say the endometriomas are BIG.

In either case, she had already made her suggestion that I get my ass into surgery ASAP.

You know I’m TOTALLY having a pity party right now. :(

Quick catch-up

August 25: my husband and I were intimate.

August 26: Intermittent vaginal and pelvic pain all day – ever since intimacy the night before. This is common, since I am clinically diagnosed with Dyspaneuria, and it’s depressing.

August 31: I was scheduled to see the pain management psychologist at UCSF for our third visit, but I cancelled it because my husband’s health insurance carves out psychological treatment to some third party company called Magellan, and therefore my pain management clinics at UCSF are NOT covered. This has thoroughly pissed me off to no end, and I spent a large part of July and August in rage over it.

August 31 was also Day 8 – when mittelschmerz was supposed to hit, but I did not! I made no mention of pelvic or ovarian pain in this blog or on Facebook, or in my iCal endo notes. So this is awesome, I did not have mittelschmerz this time!

September 5: Right side ovarian stabbing pain, and low back pain – by evening. Took 600mg Advil and one half T3 at bedtime. We had driven down to Southern California (8 hours) to visit my husband’s ailing grandmother, and it was 95°F (35°C). Grandma refused to turn on the air conditioner or the fan because she was convinced it was already on. I swear we got heat exhaustion – both of us nearly passed out at varying points of the afternoon. I finally turned on the fan, and when my husband’s aunt showed up for her evening routine of caring for her mother, she switched the unit from fan to air conditioning.
I think the long drive down there is what set off the ovarian pain, or it could have been the mocha I had that morning (caffeine).

September 6: Continued right side ovarian stabbing pain all day. Took 1,200mg Advil and 1.5 T3 over the course of the day – but it did not mitigate the sharp stabbing pain. I was in pain during our second visit to grandma, and all the way home.

September 7: back to work – the ovarian pain was intermittent and mild throughout the day – possibly because I was back to moving around again, the pain was lessened?

In other news, the light cough I developed around August 18 left again by around September 2, and has returned again as of today. I’ve begun to wonder if it’s my newest nervous tick, or if I really have been getting virus after virus since July 18. The last two have been just a mild cough, though yesterday I ran a 99°F temp all morning. Ah, the wondering that I do. My husband and I talked about this on Monday – the so-called Twenty Questions I do to myself all the time with the endometriosis, and how it never really gets me anywhere. Sure, my questioning of my diet led me to discover the gluten, yeast and sulfite sensitivities, and it helped me to realise that cow’s milk, coffee and corn syrup set off immediate pelvic pain, but more often than not, it’s just too hard to really know what causes the pain, and yet I punish myself with this never-ending cycle of guilt.

Financial mess and detox

Today the pain and bleeding have subsided. I have only had minor pain with the occasional stabbing in both ovaries and the uterus. I’m still constipated. I have not had any pain meds yet today.

I’m still sick with a cough and chest congestion. I have not taken any cough syrup for it yet today, because it has codeine in it, which is constipating. I’m just coughing the junk up. Maybe tonight I’ll take more cough syrup.

Today I had an appointment with the pain management shrink, so I checked our financial status to see where I should pull money for the co-pay and parking fees. This is when I got a huge shock; apparently the school decided to deposit two checks at the same time after having held onto them for a couple of weeks. Apparently I had budgeted the money, assumed the checks were cashed, and continued spending money from the account without looking. This is something I always do. I have created lists and lists. I have printed my account balances out. I have tried spreadsheets and checkbook registers….and STILL I do not keep a tight enough mental handle on my money. STILL it flies out the door unchecked.
This time around, I even went so far as to print out the bank statements nearly every week and set it on my husband’s desk so he could provide the ‘checks and balances’ – the oversight – in case I had failed.

Well, he didn’t look at the balances too closely, or didn’t care. Worse, he didn’t keep the printouts with my side margin maths. He thinks he just glanced at the stuff and threw it away. There goes the oversight!

So we are in the hole – the joint account is completely drained, with bouncing checks and overdraft fees. My personal bank account has less than $300 in it (I need at least $300 in order to not be fined each month for falling below balance).

And there’s my credit cards – both are maxed out; one is at $2K and the other is at $6K. Most of that damage happened in May, 2009 for the honeymoon, and the cards were finished off in May, 2010 when we went to Michigan. Payments on those cards are due in the next week.

So now I owe my own husband over $1,000, and I still owe my employer at least $100 for a hotel stay during summer school, and I still owe the training school $325 for the last class I took.

Then there’s the medical bills – I owe hundreds of dollars in co-pays for the MRI, the ultrasound and the Emergency Room visit I had because of a co-worker wearing Chanel perfume to work – who knew I’d go nearly anaphylactic?

The school costs and the credit cards are due ASAP. The medical bills can wait.

I have ongoing appointments with all kinds of medical professionals – acupuncture, the head of pain management, the pain management shrink, and massage. I can no longer afford any of this unless my husband hands me the cash on the spot.

I’m going to make yet another list for him tonight, because he said he will crunch numbers and see what he can offer me.
He’s already paying all of the rent, most of the groceries, and all of the bills. *sigh*

I am not scheduled to return to work til the end of August. I have so much homework that I NEED that time off, anyway.

The financial mess I’ve gotten us into has wrecked me emotionally. I thought I’d planned well enough to avoid this, and yet here we are. I cried at the pain management shrink today, but not about the finances. I cried about my illness necessitating all of these appointments. I skirted around the financial issue and focused on the quality of life issue. I said I just want to go back to ‘blissful ignorance’ and just stop trying to MANAGE this illness, when it just seems that there’s no managing it.
The truth is that I NEED to learn how to manage my stress and my pain, so I NEED these pain management clinics. I just think however that I can get what I NEED for FREE through the dispensaries, thanks to my Prop. 215 certification. So I’ll make out the list of services I need and see if I can get everything I need from the dispensaries, and sadly I will have to fire UCSF because it’s a huge financial drain.

In other news:
Today I am starting the kidney and liver detox diet. It lasts one month. I am not going to do the gallstone flush at the end of the month, because I do not believe it works. I do however still believe in the detox itself. Here are the details:

DETOX WEEK 1

Night before first day – Make kidney tea.
1 Tbs. Tea mix into 1 cup cold water in non-metal pot (enamel or glass)
Heat to boiling point (do not boil) and then turn down to simmer for 20 minutes. Leave out overnight. Can be made a few days at a time, extra to be refrigerated.
Warm (do not boil) before drinking.

Breakfast: (or at any time of day) Kidney Tea: Strain tea. Warm and drink one cup.

Supplements before meal: 2 clove capsules

Supplements with meal:
1 ginger
1 Uva Ursi

Lunch: Supplements before meal: 2 clove capsules

Supplements with meal: 1 ginger

Dinner: Supplements before meal: 2 clove capsules
7 wormwood capsules

Seven Vegetable Soup OR Parsley Tea 1 cup boiling water, steep a few tbs. chopped parsley for 3 minutes, strain & drink (or at any time of day)

Supplements with meal: 1 ginger
2 Uva Ursi

Before Bed: 3 tsp. Black walnut tincture in 1 cup of water

Make tea for following day if needed

Do not consume caffeine in any form (coffee, sodas, teas, chocolate) as it is counterproductive.

I forgot to make the tea so I’ll do that this afternoon. I forgot to take the 7 Vegetable Soup out of the freezer, so I just did that now and it should be ready for me by tomorrow night.

Had a good half a day

The pain and bleeding did not ramp up again until 2:27pm today.

I had gone to bed right after a shower last night, around 10:30pm.
It was the second night in a row that I’d gone into the bedroom for a moment and just fell asleep for the night.
I did not wake up until 11am today, and I was still very tired upon waking. I forced myself to eat some breakfast and stay awake. I decided to call my cousin back and chat for a bit, and also check in on the news feeds for endometriosis. I finally put a new article up on the main site.

I had spent the second day in a row at the kitchen table, because during this cycle, the pain has been mitigated best by sitting upright in a hard chair. Strange, but I’ve learned to go with it. I had just finished publishing my article, when I felt the familiar pain start to spread out in my pelvis. It feels hollow at first, then it’s like a melon-baller is being used on my uterus. At that point I stood up, and of course I knew what would come next… GUSH!
I went to the toilet, and I think I know what caused my latest round of pain and bleeding – I had to have a movement, and I’m constipated, so things were backing up and pushing all up on my uterus, fallopian tubes and ovaries. That is what caused the pain, I’m suspecting.

While I was in the bathroom, the neighbors next door decided they’d like to use the gas leaf blower and weed whacker…and of course my windows are open. I darted from the bathroom and closed the windows. That’s when the phone decided to start ringing. I ignored it.
Why does everything need to happen when I’m trying to take care of myself?
I nearly vomited from the strain and pain. I’ve been taking my calcium citrate pills but it’s not enough to fight the constipation caused by all the Tylenol 3.

Speaking of which, I have not had ANY pain medication since about 3am. The last thing I took was some codeine cough syrup.

Now that the pain has set back in, I just (2:53pm) popped a full Tylenol 3 while I wait for my unhealthy lunch of rice noodle Macaroni & Cheese to cook. I ate half a sesame seed/peanut butter/honey crepe from Trader Joe’s before consuming the medication.

Soon I will have to be bedridden again.

I spent half the day doing stuff for me, at the expense of getting homework done. Now I am in pain, so getting any homework done today will be a challenge. Enter GUILT.

Hm.

Since this is Day 4 of menstruation, and I had several hours’ break in my bleeding, perhaps this is the Last Gasp. Perhaps by tomorrow I’ll just be spotting and on to renewed health for a couple of weeks again.
I can hope.

I didn’t make it through today

The pain hit while I was watching and photographing other people’s presentations. I am the class photographer, so I felt I could not rest. I did stretches when I could. I did wide hip circles when I could. I ingested 600mg Advil gel-caps.

During the first presentation right after lunch, I was standing and photographing when I got dizzy. I regrouped. Then a few minutes later, my knees buckled. I steadied myself and lowered myself to the ground. My classmate, who also has endometriosis, was sitting on the floor nearby and rushed over to me, asking if I was alright. I told her I’d almost fallen and she said, “I know, I was ready to spot you.”
That’s when I finally acknowledged to myself, “yes, I really am in bad shape, and now other people can tell.” My face went red with embarrassment, even though no one was looking at me because I was in the back of the group watching the presentation. My classmate took my camera and told me she’d continue photographing for me.

The presentation finished, and that’s when one of the people in my presentation group came up to me and said she was leaving. She suffers from chronic migraines, and she also got her period this week, which has been the worst pain she’s been in, in a long time. She was on day three of killer cramps. I looked up at her all wrapped up in blankies and heating pads, with her sunglasses on because indoor lighting was too bright for her. I said, “I’m right behind you, I might go, too.”

Next thing I know, our team is being called to present the next lesson. I thought I had at least one more presentation before our group, so I called out to a member of my group, saying I was not ready, I need more time. Team member 1 went home already. Team member 2 came to me and asked if I was in pain, I told her yes. She told me that she and Team member 3 would go on without me and Team member 1, and that it is okay, they understand, and they will be fine up there together. I pleaded with her to ask for more time. She told me really, it’s OKAY, and gave me a genuine look that said, “just stay there, rest, it’s okay.”

I burst into tears.

The guilt! The failure! All that preparation! Would I get an incomplete? We abandoned our team mates!

Now other classmates were looking at me. Ugh. I slowly got up, knees still buckling, and staggered into the kitchen to cry alone.
And cry alone I did. I sobbed silently and sniffled a lot. I needed my medication but it was in the other room. I was not comfortable sitting or standing, and I did not want to lay down on the floor. I settled into a cafeteria chair.
I felt trapped. My legs were not working right. Everyone was watching the presentation. My endo buddy was photographing for me. I was alone. I was embarrassed for losing my cool and crying like this. I cried and cried.

When at last I felt I could compose myself, I slowly rose from the chair, and walked slowly out of the kitchen, through the presentation room, where another presentation was going on, and made my way to the public restroom.

After all that pain and suffering, I had nothing to show for it. No bleeding has started, yet.

This has happened to me often enough, but it never fails to make me that much more pissed off at my body. If I’m going to have that much pain, why can’t I already be on my period? Why do I have to have all that pain before my period, then go through the period on such continued pain?

It’s not fair!!!

I emerged from the restroom and went to the classroom, where I was finally able to take a half of a tylenol 3. I sat at my desk and cried some more. Eventually I slowly walked back out and watched the last presentation, then slowly helped my teammates clean up our presentation area, and rejoined the class for the closing presentations/goodbyes. One presentation entailed lighted candles to represent the constellations, while some smoopy song played which talked about how bright we are. I cried AGAIN.

OMG CAN THE PREMENSTRUAL HORMONES PLEASE STOP ALREADY!

I think my problem is that I have been stuck with these women for six weeks. Their pheremones have invaded and disrupted my hormonal system. Even worse, this week I had the migraine/cramp lady sitting on one side of me, and a heavily pregnant woman sitting on the other side of me!

Don’t TELL me that didn’t have anything to do with my pain and emotional state! Women’s bodies are creepy.

After class, a lot of classmates were concerned about me or morbidly curious, and i had to answer the same question probably 10 times. I’d even visually disturbed a male classmate, who said he would pray for my pain to ease up. I got teary eyed AGAIN and thanked him.

SOMEONE OR SOMETHING PLEASE KILL ME. Make it quick.

My endo buddy lugged all my coursework and backpack and shoulder bag down the flight of stairs after school, went and fetched my car, and loaded everything into the car for me.

I stopped off for take-away dinner on the way back to the motel, and now here i am, typing out my saga to you, with puffy, stinging eyes. I’m ready for a bath and bed, and it’s only 8pm.

This is the second bad pain day this week – Tuesday was also bad. Today was much worse than Tuesday. The shooting pains made me yelp out, and when the pain finally got so bad, it was an 8 on the pain scale.

Oh and the cold I’m fighting is also settling into my lungs. I’ll keep you posted on that, too.

Please, honestly, something – just quickly put me out of my misery. I’m so done with this. It’s not fair. I’m mad. I’m upset. I’m tired of this. It’s just not fair.