Second Laparoscopy: Day 36 to 44

This is going to be a long journal entry, possibly with fragmented notes, because I am getting tired of trying to make time for translating my raw notes into narrative and posting one day at a time. ;)

Before I get into the rough notes running log of recovery time, I have to note that four mantras have had to be repeated to myself during this surgery’s recovery:

  • This surgery recovery could not possibly track exactly as last time, because this time my mesentery was bumped with surgical instruments, and I also received a fourth incision.
  • This surgery recovery could not possibly track exactly as last time, because I got my period on time five days after surgery.
  • This surgery recovery could not possibly track exactly as last time, because last time, I was put on Yasmin two weeks into my recovery time.
  • This surgery recovery could not possibly track exactly as last time, because last time, I did not have endometriomas on both ovaries.

Keeping all that in mind was/is difficult, and I have often been impatient during this recovery.

And now, the running log….

Day 36
Saturday, January 22, 2011

I feel like my old self again after my period. The period still felt as painful as it always is, but it’s only a month post-op. I HAVE to keep thinking that once I’m all healed up inside, that the surgery will have provided benefit.
I had Thai food for dinner. Mmmmmm!

I had phoned one of my head teachers on Thursday to set up a meeting with them on re-entering the class next week, and was told she and the other teacher would do a conference call with me on Friday.

On Friday, I got a voicemail saying I need to talk to the Director if I have any questions. Whaaa?

So today I called the Director at home and she reminded me that I’ll be moved to a different classroom when I return to work. I told her that she and my intern supervisor had been bantering the idea around, but I had no idea it was official, now. She sounded incredulous that I would not remember. I was incredulous that she was incredulous, because I’m sure there was never an official say-so to me. It was all phone convo, so no proof for either side of the story.

Further, I was asked if I had my release for return to work signed by my physician. Whaaa?
I replied that I had submitted my time-off request back in October or November, and that should have taken care of everything. I was told nope, I need to have a signed release from my doctor before I can return to work. I panicked inside – it was Saturday afternoon – my regular doc and surgeon were not in the office, so there was no way I’d be returning to work on Monday!! I let the director know this, and she said to just get the note in as soon as I can, then.

Oh well, extra day off work, I guess. :/

Day 37
Sunday, January 23, 2011

8pm: Whoa. The director of the school I work for just called and said not to come in tomorrow and possibly this week at all cuz there’s a nasty bug going around! She’s out sick with barely a voice, and so is my head teacher! Gonna check back tomorrow afternoon, hopefully will have my lab results by then, too.

10pm: Just made Budwig Butter(TM), and now I’m grinding seeds – all to have ready-to-eat now that I’ll be going back to work after a month off. Time to get serious about the dietary changes I promised I’d adhere to after surgery! For one, I’ve been pesco-vegetarian for nearly a month!

Day 38
Monday, January 24, 2011

Got up at 6:30am, ate breakfast, prepared lunch bag, put internship binder into bike bag with lunch and my med kit, finished getting dressed and doing hair, and walked out the door. Test run to see if I can walk to work and back.
Results: it’s a mile walk each way, carrying a 12lb bicycle saddle bag which converts to an open shoulder bag. I was exhausted when I got to my destination, and was glad I didn’t actually have to report to work this morning.

9:08am
This just in: I’m seriously frustrated. A certain someone went back on their words and insisted they never said what they said. I’m totally going to tape every conversation from now on. I was just lectured that I was never told not to come in to work. I can’t come in anyway, I still don’t have the release notes from my doctor and surgeon. SO frustrated. Anxiety level super high right now.

I ended up spending the rest of Day 38 in bed, and had a crying spell in between long naps. I think the children’s Benadryl that I had taken that morning was partially responsible for making me so tired and moody to the point of crying. The other thing was having walked so far with the 12lb bag on my shoulder. I used to take children’s Benadryl every day before work because of how allergy-ridden the place is for me, and because I had some notion in my head that it would help ward against the chemical onslaught of perfumed children, staff and parents.

Day 39
Tuesday, January 25, 2011

First day back to work!! I was bumrushed by a few of my young fan club. :)
I have a new addition to my fan club! His name is Justice and he’s 3 years old. He followed me everywhere after I defended his right to have a next turn during a playground ball game. :)

When I got home from work, I discovered that my co-worker Ms. Wendy had written an update about her life celebration last week, and published it today:

I tried hard to stay here through the celebration. I wound myself up. Now, turning within seems more challenging. I love my life and everyone in it. Part of this process for me is letting go of those closest to me.

I remembered I have the habit of giving to everyone I meet, but I forget to give to myself all the things I need. Giving and nurturing to myself is really more easily said then done.

There is also a great tiredness deep within calling me to rest…I do not need to struggle anymore for anything…At this time the needs are simple-silence, meditation, chanting, contemplation, and study. My friends and family all wish me success in my goal to let it all go.

Reminds me of my dream and how I am having trouble letting go.

Day 40
Wednesday, January 26, 2011

Day 2 of my return to work. More children in my little fan club coming up to greet me.
There was gossip from a co-worker about my being moved to another class, thus displacing an assistant who’s already been in there since the start of the school year. How annoying that this person has to gossip to me, and how irritating that I have to be moved mid-year like this. I popped a couple of .5mg lorazepam that day to deal with re-entry to work (to a new room) and to deal with the gossiping co-worker. It’s the same person I’ve had a personality conflict with forever.

Day 41
Thursday, January 27, 2011

Day 3 return to work. I wore slacks this time because I was already tired of wearing skirts. This was a bad idea, as the belly button was highly irritated all day. I experienced pelvic pain and low & mid back pain all day.
The same co-worker as the day before was still at the gossip on this day, and it really got to me, so I told her I would confront the person I am displacing and see if she really is inconsolable over the fact that I was moved into her room. As we set up the room for naptime, I apologised to my co-worker for being moved into her room and displacing her. I told her I did not push for this move, that it was the decision of the director. She told me it’s alright – she said it’s time she learns the more administrative side of running a school, anyway, and that she’ll be working a bit in the office as well as in the room I came from. She’s gone through all the training and has her Montessori head teacher certificate. She just needs a head teacher position to open up for her, now.

By the time I got home from work, I was thoroughly exhausted and still having a bit of pain. I wanted to go to sleep and also eat dinner simultaneously. Much whining abounded. I settled on gluten-free freezer mac ‘n cheese, and some gluten-free chocolate cake for dessert, then went directly to bed – at 6pm. I woke at 8pm and half an hour later, I went out to the local German bar with my husband to help a friend celebrate her birthday. I thought I would fall asleep in my chair, I swear. I was back in bed by 10:30pm after having only had an elderflower soda to drink at the bar.

Day 42
Friday, January 28, 2011

Day 4 return to work. Endured parent-teacher conferences today. I was there as an intern to observe the process. I was traumatised by only one parent! I popped one .5mg lorazepam that day and straddled world of assistant and intern again. I had high energy but it ended up hurting me because I was too enthusiastic while doing “Head, Shoulders, Knees and Toes” with the kids.
There was a crazy parent for a conference at the end of the day – she’s the one who traumatised me (and my head teacher). I came home, popped 1mg lorazepam, and demanded a sushi dinner with my husband. Then I got coffee because I was so exhausted and refused to go to sleep before midnight on a Friday night. It worked – we hung out in a book store for a bit after dinner, then came home and stayed up til 3am with my hubby, watching TV!

Day 43
Saturday, January 29, 2011

Blissful sleeping in!
However, the day did not stay blissful for long. I found myself depressed and crying before my husband even woke up. After analysing the situation, I realised much of it is that I need to be ME again, and after only 4 days back to work, I’m already sick to death of wearing the Mary Poppins monkey suit. My husband was happy to help remedy the situation with clothes shopping!!! I got a new dress and a new skirt at local shop. My hubby drove us to Berkeley but the store there was rude and overpriced, so did not get my money. We hit up a bookstore before coming back home – I bought a used book called Indian Removal, by Grant Foreman (I have always been very passionate about the Native American plight). When we came home, I was exhausted and took a nap. When I woke, I made mac ‘n cheese for dinner, but only after forcing myself to think of something to make for dinner, and then I had to force myself to eat. I was still depressed. Later on that evening, we attended an independent film festival for a friend’s film, and had a good time. We came home and I went directly to bed.

Day 44
Sunday, January 30, 2011

Finally resumed Alexander Technique classes at the local dispensary today. Ow, practice hurts. Also did laundry & dishes, & took nap in between. Still tired as hell. Slowly getting back into the swing of daily life – it usually takes a few months.
In the TMI department, my husband and I were intimate before I headed off to class. During class, I suddenly experienced sharp anal pain, then sharp left side ovarian stabby pain. Ahhh, Dyspareunia, how I hate you.
The wife of the instructor held me after class for an hour talking at me, in my personal space, and told me not to say MY illness, and told me not to BE the illness. I’ve heard it all before. I was so annoyed. I came home, did 2 loads laundry, attended the grand reopening of a local store & bought a cute bracelet. All day, I had intermittent low back pain and cramping – again I attributed it to intimacy earlier in the day.
I did some dishes, bills, and made dinner, cleaned out the wonder washer, put new linens on bed, and planned to shower, but that’s when I ran out of spoons. I went to bed.
I certainly am not knocking the amount of spoons I had that day, though!!!

Special note: I did not experience Mittelschmerz this month!! :D

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).

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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.

Premenstrual pain status update

I had moderate to debilitating pain for two solid days this week – Monday and Tuesday November 22 and 23. Then by the 24th, the pain subsided, only picking back up again around 3pm when I did stretching exercises with my students. At that point, the pain stayed with me for the rest of the day. I needed half a Tylenol 3 around 8pm, and I took the other half around 11pm.

Despite the pain, I was in “Let’s get shit done” mode, because it was the eve of Thanksgiving. I wiped down the baseboards in the kitchen and bathroom, made cranberry sauce, made two dozen gluten-free cookies, and made gluten-free pie crust before turning in for the night around 1am.

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On Thursday, I experienced no pelvic pain at all!! I was therefore able to enjoy a full day of food overindulgence with friends.

Looking back at the past seven days, I can see that the debilitating pain I had was CLEARLY dyspareunia. I was intimate with my husband on Sunday, and the pain followed for two straight days afterward, before starting to clear up. And that is how it goes – that is the behaviour with dyspareunia.

We are heading into Friday, now. My period is due on Saturday. It may be on time or it may be late. Right now I am not experiencing any symptoms, thank [insert deity here].

We’ll see what the weekend holds for me!

Pre-menstural pain is debilitating

The mid-cycle pain (mittelschmerz) started on November 16 and lasted through November 17.

On November 18, I was highly fatigued, and missed a friend’s concert. I was however able to get some teaching internship homework done that night, with my remaining spoons.

I got through work on November 19, and had to return to work on November 20 for the annual Fall Harvest Festival. Parents of the children who attend the school were put into groups and had a continent assigned to them. They all had to cook or bring foods found or popular to a particular continent. Each class did songs and dances relating to the continent/country they are studying. My class has been studying the Philippines in Asia, and so they counted from one to ten in Tagalog, sang Sampung mga daliri (see another cute rendition here), attempted a traditional dance, and sang I Am But A Small Voice (which went so well that they got wild applause).

After the Fall Harvest Festival, I needed downtime. I’d used up all my spoons, but I still wanted to go out dancing that night. I was pretty upset with my body for being so tired and achey. I was mad at my mind for being so moody and premenstrual.
I ended up staying home and joining a party of friends 2,500 miles away in my home state. They were having a party and so I joined them on Skype. They were all super drunk and having a fun time, so my husband and I decided to have elderflower fizz – it is elderflower liquor with champagne.

Well, the champagne hated me worse than I expected. I know I’m not supposed to have anything with yeast or sulfites, but this particular champagne must have been loaded with them. My stomach hadn’t hurt that bad or been that upset in a long time. What a shitty day overall it had turned out to be, health-wise and emotionally for me.

On Sunday, November 21, I went to a matinee with my husband and two of our friends – we saw Harry Potter and the Deathly Hallows. When I got home, I spent the rest of the evening once again catching up on teaching internship homework, and practicing my presentation for Monday.

Despite the weekend’s ups and downs, my husband and I were able to enjoy each other intimately. I note this because with endometriosis, it is often difficult to be intimate without grave pain. Twice a month is the norm – anything more than that and we’re jumping for joy. Such as it was this month – a veritable jumping for joy.

On Monday, November 22, I began to experience gnawing uterine cramps, and I knew this was the result of having been intimate with my husband over the weekend, because I am diagnosed with dyspareunia. Same thing happened which set off the mittelschmerz last week.
So on Monday, I had sharp stabbing pain on the right, then on the left, then radiating through the rectum as day/night progressed. That day, I took half a Tylenol 3 + 400mg Ibuprofen at lunchtime at work. Later, I ingested half a Tylenol 3 + 400mg Ibuprofen at dinner time, and then another half Tylenol 3 after dinner while at a friend’s house catching up on The Walking Dead.

When I got home, I experienced a painful bowel movement, which set off some nausea and shakes, and reminded me what I’ve known for years – that I have rectal involvement with endometriosis. I went to bed with a heating pad on my abdomen and lower back all night.

This morning, I woke nearly two hours before my alarm clock went off, and could not get back to sleep. I had only had five hours of sleep. Despite that, the pain level was very low, so I went to work. I did not bicycle to work because the pain has been too unpredictable, and it has also been raining.
While walking from my car to the workplace, I was so shaky that I thought I might collapse. I couldn’t tell if the shakiness was from nerves or from my body becoming so weak from fatigue and recent pain, but I forced myself to keep walking.
I got through the morning in a moderately agitated state, with frequent bouts of ‘warm flashes’ because my hormones are doing acrobatics inside of me.

The gnawing uterine cramps started up again at lunch hour. I experienced intermittent sharp stabbing pain on the right ovary. I took 600mg Ibuprofen at lunchtime at work, but the pain radiated to my rectum, which left me debilitated, shaky and nauseous. Right before I was to end my lunch break, my bowels went into a painful tizzy, and I spent many minutes on end at the toilet, trying not to vomit from the recto-vaginal pain as a painful bowel movement tried to happen. When I finally did defecate, there was blood in the stool. My anus did not hurt, so I wondered if it was from hemorrhoids or from endometriosis perforating my bowels. Either way, I was feeling really ill.

I can handle a certain amount of uterine pain more than I can handle the ovarian pain, but I cannot handle the recto-vaginal pain at all. May as well beat me senseless, it’s all the same.

When I got home from work today, I applied a heating pad to my bottom, half a muscle relaxer (Soma), .5mg Ativan, and a nap. I slept from around 3pm til nearly 8pm. I woke to urinate, then had cereal for dinner, which caused a new round of painful defecation – loose this time, with some more blood, and nausea. I took my temperature – it’s 99.4°F. But then it’s been 99 point something more often than not for months, if not over a year, now.

I began to wonder if I have an intestinal virus. I’d spent the better part of last week fighting off an upper respiratory tract infection. Preschoolers – they’ll kill ya.

Now I’m back in bed, journaling all of this before returning to sleep for the night.

Good night.

So there’s going to be a second surgery.

On Friday, September 10th, I started feeling low pelvic discomfort/fullness. I had the need to ‘check’ myself all day to see if menstruation had begun.

Saturday morning, my husband and I were intimate, and I experienced pain as I often do. :( I noticed bright red bleeding right afterwards. I assumed this was just the little pool of blood that sometimes leaks out from the cervix and sits at the end of the vaginal canal right before menstruation begins. Within half an hour of intimacy, I experienced uterine cramps which lasted all day. However, as I had hoped, the bleeding turned to spotting quickly enough, and then stopped by afternoon. For the pain, I took 600mg Ibuprofen in the late morning, then took half a Tylenol 3 and more Ibuprofen in the late afternoon.
My husband and I went to a housewarming party that night, and I brought my heating pad with me. I did need it. :( I took another half a Tylenol 3 around 9:45pm, and got all the codeine effects – dizziness, fuzzy-headed, super sleepy, heightened sensitivity to light and noise, etc. Those things don’t mix well with a very alcohol-ladden house party. We were home a few minutes before midnight…on a Saturday night…because of my pain. LAME.

The night out, despite the pain, was not too bad. I had my usual bout of social anxiety, and I was a bad girl and took a few sips of whiskey (it had honey it it, how could I not?). As we were saying we wanted to leave, the hostess said she needed to re-introduce me to a friend of hers, who also has endometriosis.

So I talked with another endo sister and stayed awhile longer at the party. ;)
She highly recommends Dr. Cook down in Los Gatos. He’s the guy who only accepts one’s money, not insurance, but the woman I talked to last night is three years post op and says the pain has not returned. She had stage IV endometriosis, and had to have one ovary removed, as well as part of her vagina, her cervix and her uterus. She also had to have part of her bowels resected, because of the endometriosis. Really bad stuff. I asked a lot of questions about the one ovary thing – since I am convinced that I’ll have to lose my left ovary eventually (this is twice now that it’s been pulled by adhesions to my uterus).
She told me that because she had so much removed, her body freaked out. She told me that although the endometriosis pain disappeared, she had to contend with nerve damage on her bowels, and all of her organs trying one by one to shut down on her. She ended up with asthma and skin lesions and extreme fatigue and all sorts of stuff, which took over a year to clear up, and only with the help of some kind of metabolic therapy. She said she was dying a slow death. To this day, three years later, she still has issues with either keeping in or letting out a bowel movement, I forget which.
Despite such horrific issues, she says she’s glad she had the surgery.

My opinion is: given the choice between knowing the behaviour of my illness and not knowing if I will die from all the pain and suffering caused by a surgery such as described above, I will always choose my illness. Given the choice between a one year recovery and my current illness, I’ll take my current illness because I miss less time off work and thusly less money. Given the choice between possible permanent nerve damage from surgery and my current illness, I might prefer my current illness. Depends on where the nerve damage, is, I guess. I don’t think I would like to have to live with bladder or bowel control issues for the rest of my life. That stuff isn’t supposed to happen until I’m elderly. :p

For over a year now, I’ve been going on about needing excision laparoscopy to properly treat my pain, and now that I’ve talked to a woman in person who has had excision done, now I am chickening out. This is silly. I can easily get just as much nerve damage from electrocoagulation surgery as I can from excision surgery. Hell, I can get organ damage just from the laparoscope going into me. So this fear stuff needs to stop.

…there’s something else. When I did a search on my blog for how many times I mentioned ‘excision’, I read back through my entries and got really mad. You know, the human brain forgets things, and there’s something to be said about that. I feel like had I just left all those feelings forgotten, then I wouldn’t be so angry as I am right now with doctors who wrote me off, with all the time I waste trying to find the right specialist, only to be slapped in the face by people saying stuff like, “DO YOU LIKE BEING IN PAIN? THEN GO GET ANOTHER ELECTROCOAGULATION SURGERY” or “I TOLD YOU ABOUT THIS PERSON A YEAR AGO, WHY DIDN’T YOU LISTEN TO ME”.

If I hadn’t read through my old blog entries, then I might not be so mad as I am right now at my husband. But the thing is, forgetting also destines one to repeat history. And this is recent history – the blog entry I’m referring to is from February – only seven months ago. We’re in a cycle, and it does no good to keep forgetting that the finances issue is a HUGE issue. I DID go to school this summer after my husband insisted that I go, and insisted that our tax return money would cover it. When the tax return money ran out towards the end of the summer and my husband had to foot $1,000 more of his own money, all hell broke loose. We’re still reeling financially and emotionally, and then I get told I must have another surgery ASAP.

Back on February 4, I said I could EITHER have surgery OR go to school because we don’t have enough money to do both. This was before our tax return. Once we got the tax return filed on February 20, my husband said I should go back to school, and I agreed. We both thought at that point that surgery could wait.

Who knew that surgery would be deemed necessary the same year? There was no way of knowing that.

But the same frustrations I expressed about our finances are still at the forefront of our relationship today. We did have that talk back in February, and he did say that he would support and help me and that he would stop being wishy-washy. The one point we did not cover was him also promising not to be grudging or angry when I need money. He never made that promise and his behaviour is still that of grudgingly handing over money when I need it.

Last Wednesday, when I got the surgery summons, I told my husband we needed to talk about finances and planning for the surgery. Friday night, we had that talk. Once again, we got into our modes. He wanted to pledge chivalrous yet ambiguous support for me during and after my surgery. I wanted to run the numbers. I broke out the calculator and my recent timecard and compared it to my earnings before summertime to get an estimate of money that could be saved between now and December, while telling my husband about bills and groceries and things that would need to be taken care of. He sat there, eyes glazed over, zoned out, then began playing a video game on his iPhone.

While running the numbers on my end, and noting his lack of engagement after he initiated the talk, I kept working but did not look at him as I spoke, telling him, “Here’s what I need for you to be doing. I need you to go through your bills and expenses and the last three months of the grocery bills, and tell me roughly how much money you have at the end of the month each month, so that I know what you have to contribute towards the surgery, since you said you would in fact take care of me during and after surgery.”

He stopped playing his game, stared at me for a moment while I continued to work without looking at him. Then he got up in a huff and stomped off to the computer room to run his numbers in angry silence.

And this is how it always goes. He’s all talk and then when it comes time for action, he gets his panties in a twist.

He DID do his numbers and we DID compare things.

The end result of my own assessment was that I cannot afford to save money for surgery to cover the co-pay (up to $1,400 out of pocket) AND any post-op care, AND bills that will still be coming due after surgery while I’ve been off work without a paycheck.

My husband’s assessment showed that he was left with just over $200/mo out of his paycheck, if he had to continue to cover all of the groceries, cat maintenance, and all of my bills post op.
I asked if my husband could set aside money out of his paycheck every payday from now until mid-December in order to have that padding available – to cover all the expenses for up to 2 months post-op. He shared that he has about $1,476 left over after bills are paid each month. I asked if he could carve out $400/mo from now until mid-December (leaving him with $1,076 total in the bank each month, but saving $1,200 to cover me), since my bills due on top of everything else are about $316/mo ($632 if he had to cover me for 2 months).
He replied that he could logically swing it, but would feel uncomfortable doing so, in case other emergency expenses came up. He said it would be cutting it too close.
The end result of his assessment is that he cannot afford to save money now to cover me post-op in December.

This pushes my surgery out to either spring break, which is one week optional work in March, 2011 (holiday daycare week), or sometime in the summer 2011, which is a fixed amount each employee can work during the summer, anyway, due to low enrollment.

At first, I was silently very angry with my husband’s refusal to save $400/mo from now until December. But I calmed down and realised that yes, $1,076 really is in fact in the red for two people, should any tiny emergency crop up. It’s just not doable, and I have to accept that.

After doing our assessments on Friday night, I did not feel any better about how we both emotionally handle things related to finances. I still do not trust that my husband will make good on his word to be there for me. It’s all on me to save the money towards the surgery co-pay and taking care of myself after surgery. I have to start saving now.
When we got married, we agreed to keep finances separate. We only got the joint account to pool money for the honeymoon. That was the only reason we got that account. And even then it didn’t really work out so well – I still put a bunch of shit on my credit cards, and used my money, and he still used his money. The fact remains that he is very guarded over the ginormous amount of money he makes in a year, and is resentful that he has to foot all of the rent and groceries. He makes roughly sixty-five thousand dollars more than me each year, and so when he has to split his income in two to support both of us, he gets pissy.
I make sixty-five thousand dollars less than him each year, so when I easily run out of money and need something, I get all pissy when he won’t just provide the money. I don’t look at it as a spoiled princess or entitled bitch thing. I look at it as a fracking charity thing.

Another thing I found out from my assessment is that missing two or three days of work each month loses me roughly $4,000 every year at the current pay rate. At my highest earnings in the dotcom days, I was losing up to $7,200/year of my paycheck because of missing work due to endometriosis. I posted a study about this on the main Living With Endometriosis site back in April, 2010. My personal cost is much higher, but I don’t know if their costs were net pay or gross pay. My assessment was gross pay.

I still feel the same as I did back in February: “I think it’s best that I just go back to pretending that this is what all women go through every month, and stop trying to treat something which ultimately probably can’t be treated, anyway. I won’t die from my condition. No matter what I’ve tried in the last 23 years, nothing has worked anyway, so why bother to continue trying to fight it. I don’t have anyone but myself to help me financially and emotionally, anyway. Same as it ever was.”

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.

Doing better emotionally

I had my little three-day pity party, and now I’m ready to formulate a new battle plan.

Friday night I hung out with my husband and our friends, and we had game night. I drank two vodka drinks that night. I got a buzz but did not get drunk. I ate a lot of chocolate covered espresso beans and cheese. I was in ‘screw it’ mode with regards to my diet. I felt like nothing I do makes any difference – my body is going to continue to be diseased – so why not just live my life the way I want to, and eat the junk I want to eat?

Well, Saturday morning I found out why I can’t do that.

When I woke up, all my joints were aching, and I had a new round of pelvic pain going on, and my breasts were so tender that I wanted to cry. I knew the culprit was firstly all the caffeine and secondly, the booze. I know this because Tyler knows this I have direct experience with noting how my body reacts to caffeine and to alcohol.

However, the brain weasels were still invading en force on Saturday (yesterday).

I went to my friend for a massage (she is trained!) and had a lovely session with her. I started out wanting to cry my eyes out, and my voice was very shaky. I ended up with a lovely state of relaxation that carried me through the next five hours. Alas, the brain weasels are a strong lot.
However, as I was going out the door last night, a co-worker called and asked me if I’d like to share a hotel room with her for the next training class on July 5. I was confused as to the dates, and so she called her mom (who runs the school I work at).

Get this – I thought my next class was this coming week, but it’s not! It’s not until NEXT week! Hooray! I was soooo stressed out about getting all my homework done from the last class, and now I have another week to do it. My co-worker told me not to stress, that I actually have all summer to get my homework done. This jives with what two other co-workers have told me. But the teacher I had for this last class was telling everyone the homework was due June 21, and I was all stressed to hell that it was late already. So glad I have more time. And on top of it, now I have a room to share instead of footing the entire bill for a room myself. Commuting down to Sunnyvale had been quite a bitch last time. Getting a hotel room is much more preferable.

As I was saying, I was on my way out the door. I went with my husband and two friends to see Concrete Blonde’s 20th Anniversary Reunion concert last night (OMG it was so awesome!!), but I was still such a spaz that I felt I needed a drink. I would have taken a half a Tylenol 3 were it not for the fact that I’d left my medication in the car. So I drank to quell the brain weasels, instead. I only had one drink – Mount Gay rum with club soda and some lime. It was godawful but that’s the best the bartender could come up with outside of corn syrup-infested alternatives. I should have just had the rum neat. Ah well. It did its job in the end.

I wore a corset to the show last night, hoping it would stabilise my back, because I always get bad back pain when standing at concerts.

The corset didn’t help. So there I was, in moderate back pain by the middle of the show, and I didn’t have any meds on me, and I didn’t want to drink any more booze in case the back pain got worse, or even worse, in case the pelvic pain returned.

On the drive home from the concert, my mid back began to spasm. I laughed hysterically and kept saying, “at least it’s not pelvic pain, this is actually manageable!” I tore at the corset strings and ripped the thing off, and dug my hands into my back to try to work out the spasm. Things didn’t calm down until I got home and smooshed my back to a tennis ball to the wall and rolled on it to try to work the blood flow in the back.

A TMI note – I was intimate with my husband and right afterwards, the pelvic pain kicked up. I need to note this because I am clinically diagnosed with dyspaneuria, and now I’m ever aware of the cysts on my cervix thanks to the latest MRI report. There was a tiny bit of blood in the vaginal discharge after intimacy. The nerve pain began immediately – first a tiny tickle near my cervix, then fringing out slowly to a burning sensation inwards, radiating throughout my entire pelvis. I reached about a 4 on the pain scale, but I did not take meds because I’d had one rum drink earlier in the night.

Today I’m going to review the list of inflammatory foods, and resolve to cut out sugar and ALL dairy (including goat milk) from my diet. The Budwig diet however calls for yoghurt, so I dunno what to do with that, yet. Maybe I’ll make an exception and just have goat milk yoghurt in the diet and keep the restriction to no cow’s milk anything, no bottled goat milk, no cheese, etc.

The point to the new battle plan is that I want to try to stave the growth of the endometrioma on my left ovary.

Wish me luck. The last time I cut sugar out of my diet, I had an emotional meltdown from the withdrawals.

One week post menses – pain

The weekend after I was feeling better, my husband and I were intimate twice. This resulted in pain for me both during and after, lasting for a day and a half. There was some debris and moderate intermittent cramping.

I wanted to note it here. I forgot what my diet was like that weekend. I know that on the mental front, I was quite manic and it seemed out of the blue. Mercury retrograde was ending, and there was a New Moon. I want to say I was having Irish Tea (caffinated) once daily at lunchtime. I forget if I was eating a lot of chocolate or sweets.

And then of course I have lately been of the mindset that food and drink don’t even need to be recorded because the pain will be there no matter what.

So there it is, recorded – dyspaneuria continues for me.

Always with the catching up

NOTE: This post contains references to relations between a married couple. You know, hootie hoo, insert tab A into slot B… that sort of thing. It’s on topic!

I’m looking for a job full time, researching and blogging for endometriosis awareness full time, and going to job interviews. So now my pain diary is falling behind. Don’t even get on me about ReliefInSite or CureTogether – I’ve barely touched those, either. Always playing catch-up.

So let’s go back in time once again, and then get caught up to present day.

Thursday March 12 was the ant invasion on the heaviest day of my menstrual cycle. My husband brought home peppermint and cinnamon oils. We tried those in dilution, to no avail. The next day, I said screwit and applied cinnamon oil directly. That seems to have worked.

I noted that I felt better on Friday, March 13. I continued to feel better. I did go to the doctor and saw whomever was available – Dr. Tsao was good to me. She told me black stools are normal when taking iron, and nothing to worry about. She sent me for a blood draw. A week later it came back that my iron levels, despite having taken all that iron, were still low!!! She said my levels were on the low end of “normal”, but still low, and to just continue taking the supplements as I’d been doing. I backed off anyway, though. I’ll just take the recommended dose for the next month and see how that goes.

labwork_ironlevels03162009-summary

I did get to Calistoga and had a nice time. I swam in a 102°F pool, I got an hour-long massage, and I giggled with a gaggle of women and we all helped our friend have a great, low-key bachelorette, just what she wanted.

http://www.indianspringscalistoga.com/

http://www.indianspringscalistoga.com/

I did get out to the nightclub for the 16-year anniversary party of that club’s existence. Had a fun time. Danced my little patootie off.
img_0058

I did get to the job interview on Tuesday, March 17, and I did great, but as expected, I did not get the job, because of my health condition. She stated it directly as the reason why she did not hire me, but thanked me for being forthright.

Now, I don’t really talk about this … but really I should…as uncomfortable for me as this is, it’s important for me to be able to track back and relay this info to my doctors…I was intimate with my hubby on March 17 but I had pain and spotting right after. I am clinically diagnosed with dyspaneuria (pain with sex) as part of the larger endometriosis diagnosis, though doctors can’t say for sure if it’s because of the fact that I also have a tipped uterus or if it’s because of the location of the endometriosis in my pelvic region.

The uterine/bladder pain continued into the next three days, with moderate low back pain as well. So Tuesday was mild to moderate uterine pain, Wednesday was moderate uterine plus low back pain, Thursday was on and off pain in uterine area and low back, and then on Friday, it worsened. I noted that I felt the need to urinate frequently. This began overnight, and worsened through the day on Friday. I had stinging pelvic pain, and I also developed hip pain after walking in San Francisco a mile and a half from my gynecological surgeon’s office back to bus station. I could have taken the bus, but I hate taking the bus because I really don’t like being in that close of proximity with strangers. I had too much mental energy going on and preferred to walk.

On Saturday, March 21, the pain was gone. I did get my hair coloured, and it turned out faboo! My husband liked my new hair colour, too. >:)
steph_newhair03222009_8
More intimacy ensued, and there was no pain during or after! (the month of March is by far the most action I’ve given my hubby in a long time. Wish it could be like this all the time, with no pain of course).

On Sunday, I had another job interview, and it went really well, but again, I’m not holding my breath.
Sunday evening, we joined up with friends at a local theater which was abruptly shut down after longstanding disagreements and negotiations between building owner and tenants failed to produce an outcome desireable to the owner. People were out collecting signatures to try to persuade the owners to reopen the theater. We saw our last show there with friends, and I had two glasses of wine. When we got home, my husband handed me a shot of whisky. It had been a tough day – we were both wrecked emotionally by seeing our friends literally weep because the place they got married in was now shut down. I promised the guy doing the paper petition that I’d help him also get an online petition going to further his cause, and now that seems to have become my third unpaid job.
I have a full time job of looking for work, a full time job of endometriosis awareness blogging, and now a part time job of monitoring signatures for an online petition (we’re already up to 316 signatures in just two days!)

Noting the fact that I drank alcohol on Sunday is important because…

On Monday night, I was preparing to go out dancing again. As I leaned forward in a chair to tie my boots, it felt like my entire pelvic region was frozen in place – it simply didn’t want to move with the rest of my body. The pain was sharp, stabby, and made me cry out. The pain didn’t dissipate like it sometimes does after a wrong move like that. The pain just continued, like waves fanning out after something initially hits the water. I popped half of a Tylenol 3 and went out dancing anyway, because I’m stubborn like that.

Movement and exercise did not help.

I am here to tell all doctors, friends and family members, that telling anyone with endometriosis that you’ve heard that exercise helps – IT’S ALL LIES.
So shut the hell up!

The pain was pretty unbearable at times, but I still tried dancing when I could. I rarely lasted an entire song, because I was so fatigued and/or in pain. I took another half Tylenol 3 on the way home from the club.
Late Monday night, the hubby and I were at it again. I was drugged on Tylenol 3 so I thought I was feeling better, right? HAH. The fun didn’t last long. The pain was razor sharp and I started spotting.

I woke up Tuesday and POOF! The pain was gone.

I had yet another job interview on Tuesday, and while at the interview, the pain returned. Go me! :(
I was handling a 6-month-old baby. He’s not heavy – he’s kinda small for his age. So lifting and carrying a baby can’t possibly be what set off the pain, could it? I have no idea.
The pain continued on and off for the rest of the day.

I accomplished putting away some laundry and catching up on endo awareness blogging, but found it hard to wind down at the end of the night. I’m sick of having pelvic pain when I’m not even on my period. I’m bitter. I’m angry. So in that, I become weak and I cave into coping mechanisms. Like drinking. I had a glass and a half of wine last night before bed to chill the hell out. It worked – I was able to get in some leisure reading (oh it’s never JUST leisure with me, I ended up taking notes for later research – the books I was enjoying had to deal with stuff to see in the UK).

Woke up today, and so far, I’m feeling fine.

Today I plan to hang out with a friend in SF whom I’ve not seen in awhile. We’re supposed to go thrift store shopping. Let’s see how well my body holds up.

So to summarise, let’s put it all in perspective, my month so far:

march2009