I Will Not Suffer In Silence

My last post was in the wee hours of Saturday – 1am – before going to bed for the night.

Saturday afternoon we decided to go hiking because the weather was absolutely gorgeous – sunny and in the 70’s fahrenheit. My husband chose Purisima Creek in the hills above Redwood City. These hills overlook the Pacific Ocean on one side, and the valley of the San Francisco Bay Area on the other side.

As it happened, Saturday was also the clearest day I’ve seen in a long time, so the view was extra special spectacular.

I did have pain on and off during the hike, but it never got as bad as the pain less than 24 hours earlier. I thought about taking ibuprofen or half a Tylenol 3 to knock out the pain before it could get worse, but I didn’t want to slow myself down further by getting tired from the meds, so I was stubborn and didn’t take the meds. I’m glad I didn’t.

The only two times I wanted to cry on the hike were not due to pelvic pain but to knee pain! We were on our way back, after we’d been hiking for an hour, and we were walking up hill. The pain and fatigue in my knees (which are arthritic) was almost too much to bear at times. I rested a lot. But we made it safely back to our car before sunset (when the mountain lions come out!).

We made it back into town in time to join our friend for his sushi birthday dinner, and drinks at the local tiki bar afterwards. I even went home after dinner and changed my clothes for the tiki outing. ;)

Quite a long day for someone who was seriously ill just four days before that, with residual pain for days!

I am a warrior woman. I rock the house and bring it down, y0. ;)

 
I even made a video for my endo sistas:

 
Photos of our friend’s birthday evening are here:

I am INSANELY mad that the pain has returned!!!

My husband and I were walking through the gate to our friend’s condo for movie night tonight when I was suddenly doubled over in stabbing uterine pain. The pain is tending towards the right side of the uterus. It doesn’t feel ovarian, but the right ovary is where I had a lot of pain a week before my most recent period.

The pain stabbed me all the way to my friend’s front door. It was hard to walk – every step felt like I had something trying to rip my uterus from its hinges.

Once we got inside the house and I sat down, the pain went away. Every time I stood up, the pain returned within a minute or a few minutes. Stabbing death – enough to take my breath away and make me double over again.

After watching a couple of movies, we stood up to bid our friend good night, and talked for awhile. The pain took longer to come back – I was not on any medication all night. I had it ready to go but never took it cuz I was fine as long as I was sitting. When the pain did hit me again as we stood talking, I doubled over again. The pain has been constant ever since. I’m home in bed on Tylenol 3 with a heating pad on my pelvis and on my lower back.

I am going through the usual pointless questions: was it the one piece of chocolate I ate right after work? Was it the large hip circle exercises I was doing this evening before we went out? Did I lift a grocery bag the wrong way at the store on the way to our friend’s house? Was it the fact that I hadn’t eaten a proper lunch today – only protein bars?

Most if not all of us endo women go through this insane questioning. After 24 years of this damned illness, I really am done with the constant line of questioning everything I do or ingest as cause of immediate following pain.

Honestly, I’m in pain because that’s just how the endometriosis rolls. Seriously. Stop blaming yourself for everything. Your in pain because that’s what the illness does to you. Just because. It’s growing like a cancer inside of you. That’s just how it is.

I will get a second surgery. I know the endo grows back. I hope every waking day that my eventual menopause will end this nightmare.

In case anyone wants to suggest I get a hysterectomy…
I can’t get hysterectomy because I have endo on the bladder. Taking the cervix, ovaries and uterus won’t remove the endo on the bladder. Putting me on HRT after hysterectomy will continue to flare the endo on the bladder.
Oh and there’s that other small issue of me going completely effing insane and suicidal every time I’m put on hormonal treatment.

So don’t even talk to me about hysterectomy, unless you want attitude shoved down your throat, and doctors, don’t tell me I must like being in pain, unless you want your nether regions ripped out by my bare hands and shoved down your throat.

I was able to go back to work on Wednesday. I had minor pelvic pain and was spotting. I was slow moving and tired of course, being that I’d spent the previous four days hopped up on Tylenol 3 and Ibuprofen for all the pain. I survived the day at work, assisted by a total of 1,200mg of Ibuprofen. On my lunch break, I was asked if I could come back that evening for after hours daycare – I said yes because I’d already missed the previous two days of work and felt that I needed the money. It’s hard because my husband makes $80K/yr. I currently make about $18K/yr. That seems like quite a lot of money just from my husband’s income alone, right?
If we only existed on his income though, it would hurt in the state of California, which is quite expensive where we live (Bay Area). I keep saying we should move back to Michigan but one, there’s a lot fewer jobs, two, there’s snow, and three, my native-California-born husband is terrified of Michigan, calling it a cross between Deliverance and Blair Witch Project.
And so here we are, living in sunny California, and I am in my first year as a Montessori teacher, working for peanuts to add to my husband’s income so that we can live comfortably.
Don’t get me wrong, I couldn’t NOT work. I’m too much of a spazz to be left on my own all day. I just couldn’t do the housewife thing.

On Thursday, I got moderate pelvic stabbing pain beginning after 4pm (thankfully after I was out of work). I was still spotting bright red, and began to seriously wonder if the last gasp hadn’t occurred on Tuesday and was laying in wait.
Thankfully, I was wrong. The last gasp had in fact happened on Tuesday. What I was experiencing on Thursday was probably due to not having slept well Wednesday night, working a full day on Thursday, complete with a lice outbreak I discovered at the school and me having to be the one to inspect the entire rest of the class’ heads for lice because the head teacher was too wigged out to continue class at that point (thankfully, only the one child had it and was sent home immediately)….and after all that I zoomed across the Bay Bridge to try to make it to my friend’s arbitration meeting in time, and I got a bit lost on San Francisco’s rush hour streets. Just a wee bit of anxiety that day…

Have I ever mentioned how much I hate driving in San Francisco?

I really hate driving in San Francisco.

I guess I could have taken the BART to The City and walked from the station to the arbitration appointment.

Have I ever mentioned my fear of taking public transit alone?

I really hate taking public transit alone, because I’m afraid I’ll get lost. Getting lost as a pedestrian is even more terrifying to me than being lost while driving.

I got through Thursday but came this close to a panic attack after it was all said and done. I nearly ended my sobriety, but thought the better of it and made myself some bedtime tea when I got home. More and more, my body is rejecting the things I’ve loved to eat and drink, be it through allergies or be it through hormonal imbalance setting off more pelvic pain. I can’t really go back to drinking wine or liquor because of the immediate side effects from sulfites, glutens, bad distillation, immediate ovarian and/or uterine cramping (mild but enough to make me uncomfortable)…it all makes it worthwhile to just stay sober for once in my life. I spent too many years as a weekend lush, out at the nightclubs, drinkin and dancin til I blacked out. Yeesh.

I didn’t get to bed til 11:30pm last night, and I didn’t want to get up for work today, because my head teacher was out of town and I knew I’d have to run the entire class on my own.
I did it though! I did it! I managed 17 first and second graders through their scheduled curriculum today, woohoo! And they behaved well for the most part!

At the close of the day today, I was suffering headache because I hadn’t had time to eat lunch, and I hadn’t been drinking enough water. My low and mid back were screaming in pain as well, probably because I was so nervous at having to run the entire class on my own with occasional help when the afternoon supervisor had time from her busy duties. All the teachers are stretched at this school right now. I’m thankful I had help at all. Another teacher came in towards the end of the day and took some papers for grading off my hands. I need to get that woman a gift for that.

So I am sitting here on the couch, my first day no longer spotting. I am still hugely tired and cannot go near a gym until at least Sunday. I am still freezing my ass off, even though it is 70°F in the house.
Despite that, I declare Friday, March 26, 2010 the day I START THE CLOCK for the next cycle, because I’m no longer in pelvic pain, and no longer spotting enough to wear a pad.

The clock is set; I have 18 – 19 days before the next cylon attack bedridden time.

It is the weekend – a weekend I will get to enjoy because I will not be bedridden! Tomorrow is supposed to be sunny and 71°F. Ahhh, bliss.

The old guilt is back again, because I have to take another day off work for the pain. Let’s back up a day though, so I can catch you up on Monday.

I knew Sunday night I wouldn’t be in any shape to go into work on Monday, so I’d made the necessary calls. The pain woke me up before 8am on Monday, and I had to cram food down my throat to line my stomach in order to take my pills. I started off with one and a half Tylenol 3 first thing in the morning because of the pain. I had decided that due to the pain level (8.5 on the scale), I would be better off in bed than on the couch with the laptop. My husband was getting ready for work and was off in the shower. Me being impatient, I decided to set up for a day in bed despite being in a lot of pain. I was clutching a heating pad with one hand and moving blankets and such with my other hand. I decided this would actually make a great video – detailing that it’s hard work on a person in pain just to set up for a day in bed if one still wanted to have a connection to the outside world. I did a video outtake and settled into bed, exhausted. I think I fell back to sleep at that point, I can’t remember.

Within the first few hours in bed, my lower back and buttocks decided they could not take the pain of sitting in bed. I moved to my computer chair at that point. This is unusual – my body normally cannot handle sitting upright when I’m in so much pain. But the lower back really needed the support of a chair.

I spent much of the day wrestling with iMovie ’09 on the laptop before launching iMovie ’05 on my desktop machine and figuring that out much faster than iMovie ’09. I had created a video back in February to update everyone on the past year of my life – it’s been that long since I uploaded any videos to youtube!! And now it’s taken another month on top of that to figure out all the edits I wanted to do for the movie. The end result is that I’m getting much better at making videos.

I ended up taking three Tylenol 3 and 600mg Ibuprofen over the course of the day, yesterday. I stayed as constantly medicated as I could. By the time I went to bed late last night, the bleeding and the pain had subsided. My kidneys were throbbing from all the Tylenol and Ibuprofen I’d fed them.

This morning I woke up with a headache and stuffed up ears, full body sore joints, and a feeling of dread in my pelvis. I ate some leftover pancakes, drank some goat milk, took a half a Tylenol 3 and 600mg Ibuprofen and called in sick to work, expecting the worst. And then extreme fatigue claimed me and I crawled back into bed and slept for another three and a half hours.

The pain woke me at 11:48am. I cooked some leftover yummy Thai food my neighbor had brought me yesterday out of the kindness of her heart (my inner Southerner says “bless her soul”), and before I could eat, the bleeding and pain started up again as I knew it would.

I’m on round 2 of a half Tylenol 3. The joint pain is still flaring, and my legs are bloated to the point of feeling very sore from the thighs to the ankles, and especially under the knees. The bleeding didn’t get as heavy as I thought it would, and the pelvic pain didn’t get as bad as I thought it would. It spiked at about a 7 and is now down to 5.5 on the scale.

My guilty conscience says with pain at a 5.5 on the scale, I could have gone in to work. But then I snap out of the guilt and remind myself that I’m still on Tylenol 3 and Ibuprofen to manage said pain, that’s WHY it’s at a 5.5 on the scale. AND I’m not stooping and bending, kneeling, sitting and walking like I would have to do at work. So I can cut the guilt crap out RIGHT NOW. I don’t work no desk job anymore.

So that’s where it’s at today. I wish the waiting lists weren’t so long at the dispensaries to get free reiki or body work done. I would LOVE a full body massage right now. Le sigh.
Maybe I’ll find enough strength to scrub out the tub to take a hot bubble bath.

Oh – side note – I’m back on the herbal powder my acupuncturist gave me. We decided to give it another try, see if my body has reactions to it. So far so good. I’ve been drinking it 3x/day using a teaspoon of the powdered herbs. As for other pain management, I’m still doing large hip circles, slow stretches, and basic yoga poses.

Lastly – the weather. This is the third sunny day I have missed enjoying during this cycle due to the pain.

I woke after six and a half hours of sleep with the need to use the bathroom. I wasn’t in much pain.
The moment my uterus and bladder emptied, the searing pain began. I really wish my uterus was able to let the menstrual blood out during the night, instead of holding it inside as well as my bladder holds urine. Because the uterus was distended with fluid, it pressed down on my bladder. Because a large endometriosis implant (left in at time of surgery three years ago, because the surgeon was too afraid to get to it) rests on the ultra thin tissue wall which lies between uterus and bladder, the endometriosis lesions press upon the bladder, setting off the bladder’s pain receptors. Once the uterus and bladder distend and then deflate …

33 minutes later…

The pain got to be a 9 on the scale, which meant I could no longer type. I had been eating food so that I could take medication, but the pain ramped up fast. I took one and a half Tylenol 3 pills and staggered to get my heating pads. By the time I got back to the couch with one warmed heating pad, my husband had awakened and was assisting me in warming a second heating pad. I was in too much pain to talk, to do breathing exercises properly, to do anything but sit there with knitted eyebrows and gaping mouth. And then I remembered how pretty I looked just one week ago when we went out dancing, and I know how old and haggard I look right now from the pain. I began crying at that point.

I realised too that I’d let a lapse of medication occur overnight again. That’s why I’m in so much pain this morning. I woke around 7am or 8am to use the bathroom, and wasn’t in much pain, so my rationale at the time was to not damage my liver and kidneys further – give them a rest – and just go back to bed.
Had I taken the goddamned cocktail of Tylenol 3 and Ibuprofen like I was supposed to, I’d not be in severe pain. There’s nothing to discuss – my kidneys and liver will continue to be damaged – there’s no way to stop that. It is mandatory that I be in a drugged stupor from start to finish of each menstrual cycle, else suffer the pain consequences equivalent to going through labor and giving birth dry, with no meds or assistance.

The pain is about a 7.5 on the scale, now. And I’m drugged silly. Going to add some Ibuprofen to the 1.5 Tylenol 3 I just took, since ibu is anti-inflammatory.

To give you a visual of what pain does to a person:

This was me on March 15, 2010

This is me today, March 21, 2010

And today is the second day of Spring. The weather is 58°F with hazy sunshine. I won’t be seeing a drop of it.

I’m still convinced the horrible pain I was in last Saturday was a ruptured ovarian cyst, because the bleeding took so long to begin this cycle, and it’s very thick and dark. I slept for about nine hours and woke at 12:30pm yesterday. I was still barely spotting and was not experiencing a lot of pelvic pain. I should have been jumping for joy, right?

Instead, I began fretting over Time.
I was due on Friday. I’m usually on time. Descending to the underworld full speed ahead Friday morning would have meant that by Sunday night, most of the pain and despair would be over with, and I’d have a good chance of returning to work on Monday.

But no. The pain and bleeding ramped up late Saturday afternoon, so that means I have Saturday night and all day Sunday to get this endometriosis cycle out of the way before Monday 8am.

Fat chance.

I hate taking time off work every goddamned month for this illness.

I’ve been fired from two jobs because of this illness, and although I’m assured on the current job that I’m special, needed and wanted despite my illness, I still suffer the PTSD from those two other jobs. One harassed me for months before firing me. One harassed me for a couple of weeks – I quit 2 days before they were to fire me cuz someone leaked it to me.

I hate that I barely make enough money to even try pulling any financial weight around the house. Missing work gives me that much less money to work with. It may as well be babysitting money. I cannot cope with not being able to go halfsies like my husband and I used to do. He assures me it’s fine – that he’s so happy to see my sanity restored by working with kids again instead of in corporate hell. He keeps gushing about seeing all the kids that ran up to the fence Friday afternoon to say goodbye to me as I left work for the weekend. I call them my fan club. ;)

And those poor kids – I currently assist a class of mixed first and second graders. One of their teachers has been out sick for over a month – she’s got something serious and the staff’s not talking much about it. Could be cancer, could be lupus – it’s definitely taken out her immune system and she’s been having surgeries. I spent 3 weeks in that class with the co-teacher, and now I might be out sick for a day or two. The kids can’t take much more upheaval. Some of them were literally sobbing when their teacher came by for a visit Thursday afternoon, they miss her so much.

So it’s pretty obvious then – I don’t like letting people down – and having endometriosis means I will miss work, I will miss parties, I will miss appointments, I will miss out on life. I’ve been meaning to chronicle how many sunny days I lose to endometriosis in a year. It was in the 60s and mostly sunny today, and I couldn’t be out in it to walk around, bicycle, go hiking, because of the pain.
If I can make what I go through as concrete as possible to people, I think that might help quicken the pace towards a cure – more people will demand and fund more research to find a cure for endometriosis.
Education and awareness – it’s a small bit of hope I have.

Late last night I was searching the web for images of Persephone, since I’ve been using that analogy for the last couple of months to illustrate what it’s like to live with Endometriosis. I had images of hell in my head, images of the underworld, images of women in extreme pain. I had Goya’s art in my head, and Waterhouse’s paintings in my head. Looking at individual works by those artists however did not give me the image my brain was after.

And then I found this image at closet light:

It’s perfect.

I shared this with my husband, who wanted to know more about the artist. We googled the name he used in his reply to me on his site, and found out he’s also on deviantArt. This led me to ask my husband if he’s ever signed up with deviantArt, yet. He hasn’t, so I’m pestering him. :)
In the meantime, some of my husband’s old art can be seen on his website. I’m also pestering him to add his recent work, since he’s like this awesome layout, editing, book design, art department, maps and sometimes writer for Chaosium, Pagan Publishing, and Miskatonic River Press. :D

Thank you, David, for allowing me to use your beautiful artwork on my site. I have given you credit and a link to your site in the footer section of this website.

To my awe and wonderment, I was able to work a full day, today.

I was unsure of my body upon waking, since full body joint pain worsens for me just before and during menstruation, but I slowly worked it out like I do every morning, and the pelvic pain did not worsen.

As I left the house to go to work, I felt like I should be looking over my shoulder, in case george was going to run up right behind me and knock me to the ground. But he didn’t.

I did get cramps at work, and I did have to medicate with ibuprofen. Every time I thought, “oh no, the pain is ramping up”, I’d wait a couple of minutes to see just how bad it would get, and the pain would die back down or disappear. This happened several times, today.

I spotted on and off. It’s still light to dark brown. By the time I was preparing to leave work at the end of my shift, the pain began ramping up again. The worst the pain got all day was at the end of my work day, and I took a half a Tylenol 3 the moment I got home. The pain was about a 6 on the pain scale by that time, and even now I am still only barely spotting.

My body feels like it has been in limbo all evening – it wants to be very tired, but my brain is not tired. My body wants to be in pain but it’s just not getting above a 3 or 4 on the pain scale. I took another 600mg ibuprofen this evening to ensure the pain remains minimal.

Oh and my legs and knees are still moderately sore from all the dancing I did last Monday, which doesn’t help with the joint pain issue.

I would love for the bedridden pain to pass me by completely this month. That would rule.

For the last few months, I’ve been referring to myself as Persephone, and telling people I have to take frequent trips to the underworld for a few days each month. Unlike the original story, where she must spend 3 months in the underworld, I spend roughly the same amount of time, but spread out instead of all at once.

If I could draw what the underworld looks like, it would be a cross between Goya and Waterhouse.

Today when I got home from work, I noticed that lovely turn of colour that always happens to signal menses. Two hours later, as I arrived for my acupuncture appointment, the spotting began. It started off bright red, and is now dark brown.

The pain ramped up a bit, but the acupuncture appointment calmed that down. Four hours later, the pain is ramping up again. I popped 600mg Ibuprofen. I ran out of gel caps so it’ll take a bit to kick in. Meh. Thinking of whack-a-mole with the Tylenol 3.
Worried I’ll have to call in sick tomorrow.
Nerve pain radiating down from inflamed endo-ridden pelvis along the tops of my legs to my knees.

Gonna try to sleep.

Wow the hormonal imbalance is really working itself today. I have no time to write with my usual grace. It’s already past my bedtime.

Today I felt angsty. I got home from work, hopped on my bike and rode half a mile to the post office, went to bank – can’t cash checks cuz husband let the joint acct lapse w/ no cash in it. I let him have it.
Went to grocery anyway and spent the $20 i had on me. rode home, told hubby i need more groceries.
Drove instead of rode bike to work cuz I’m still crippled from going dancing Monday night.
I did 1.5 hours of after hours daycare at work while some parents had a meeting. i watched five kids. one escaped immediately down the hall and was returned by his mother. i felt like a total failure. apologised profusely. while watching the kids, i had stabby right side ovarian pain again. lasted only a couple minutes.

got home, felt ragey. changed litter box, emptied trash, readied recyclables, emptied and reloaded dishwasher, made a batch of 7 vegetable soup, made a batch of thai coconut soup, baked some chicken breasts.

ate some thai soup, popped a tylenol 3 and 600mg ibuprofen because the joint pain warranted it.

The premenstrual rage and XXTREME NESTING (i.e. cleaning frenzy) isn’t always this bad, but it’s not unusual for me, either.
There’s been food cravings, too. I’ve gone through two bags of gluten free chocolate chip cookies in the past 7 days.

Going to shower and go to bed, now.