I Will Not Suffer In Silence

Steph and Badger are now MARRIED!

-photo courtesy Diane Meeks

More photos as soon as we get them all in one place…

:D

Oct. 28 Edit: Clicky here for lots of pix!

I’m home alone on a Saturday night because I’m still too ill to do anything besides sit in bed on pain medication. The Endometriosis pain started on Tuesday so should have abated by now. Alas. I could think of a million reasons why I brought this upon myself. I could blame the lovely hot bath I had last night. I could blame the food I ate today or yesterday or for the past month. I could blame being too active too quickly when I should have continued taking it easy.

I go through this mindset every single fecking month for the past 23 years. When really the deal is that I am ill. I have an incurable illness which behaves as erratically as it grows inside my body. The Endometriosis is cancer-like – it grows out of control – how am I to expect that with out of control growth that the pain would somehow not be out of control or on a whim?

This means I am not in control. I am at the mercy of this illness. I am a prisoner in my own body.

And then the guilt. Every single month for years now – I feel guilty for whining when I know full well that many women NEVER get out of bed because of this illness. At least I get roughly 16 – 23 days each month to be free, to feel energetic, to rebuild my strength, to get shit done in life, and to have fun before my body shuts down again and shudders in severe pain.

What a way to live. Back and forth like this – pity party and guilt tripping in the same breath.

I got a wheelchair on freecycle.org so that when events are happening and I’m ill, I can still go out – if I have a buddy to help me out. But tonight, although I was hoping to be out somewhere having fun on a Saturday night, all I want to do is lament.

I’m sure having been on Tylenol 3 and muscle relaxers for the past week hasn’t helped with my mood AT ALL. They are known depressants.

*sigh*

Well at least I got a lot accomplished today before the next attack.
I made it about eight or nine hours pain free.

This morning I got up at 9am, my friend took me to the Oakland Flower Mart so I could get some curly willow branches for a project, then my man’s friend came in on the train for the weekend, and joined us on another errand we had to run.
We stopped off at Julie’s Tea for some refreshment and then picked up my car, which has been in the shop since Thursday (old age issues).

While on my way walking to drop off my new sunglasses for repair (the coating is coming off already, WTF), I stopped to text my replacement hairdresser (Emmie) about getting my dye job fixed today.

No sooner than I sent the message, I felt a *trickle*.

I turned my ass right around and headed for home, because I knew the pain would be next. Within a few minutes I was staggering through the front door.

Goddammit.

Now I wait for drugs to kick in and Emmie to arrive.

Searing pain just woke me up.

Empty stomach… must eat some food first before taking opiates…

This is going to be one of these times where I writhe for a good long while despite taking meds.

:(

Last night I was crying because I was upset for my chosen sister, whose cat of 16 years (and a cousin to my cats, so I knew him well) passed away. My sister has endured a lot of loss this month and I just feel it isn’t fair.

My eyes were red and hurty last night so I put in some Visine drops.

This morning I woke up with my eyes puffed nearly shut.
In the 20 minutes I’ve been awake, the left eye seems to have improved somewhat, but the right eye still has major swelling near the duct (near the bridge of the nose). And I have a headache.
Is this JUST from crying so hard? Or is this because of a reaction to Visine?

GAH…this bullshit, on top of the Endometriosis pain.

Oh and have I mentioned my cough returned yesterday?

I’d like to sob uncontrollably but that will just make my eyes, and just everything, worse.

I’m home this morning, stoned out of my head on Tylenol 3 for the Endometriosis pain, and the phone rings. It’s some collection agency trying to collect over $160 from the abusive E.R. visit which happened six months ago already.

They said they’ve not had the correct home address and wanted it.

I told them I got the doctor bill just fine and paid it, and it was only $16, not no $160…
They told me THIS bill is the HOSPITAL bill, and is different from the doctor bill.

I told them I’m not paying it, because I was mistreated at the hospital.

The guy on the line tried to threaten me with “ok so this will go on your credit report…”

I retorted with “No it won’t because you’re going to talk to the hospital and they’re going to waive this because as I stated, I was mistreated at the hospital.”

I ended up hanging up on the guy and calling Alameda hospital.

I got similar treatment – they have my old address, they want my new address. Why did I get the doctor bill just fine to my new address then? “Well that was the doctor bill, this is the hospital bill and we don’t have your new address…”

What the hell kind of lazy assholes don’t update between doctor billing screen and hospital billing screen?!?!? How is that my problem?

I told the lady I’m not paying the bill because I was mistreated. She asked condescendingly who I had talked to at the hospital. I told her I went all the way to the top and spoke to Dr. Otani.

That shut the bitch up. Her tone dropped a bit and she said “…oh.”

Now I am waiting for a callback from Dr. Otani’s office and we’ll go through this again.

And the resolution will be, NO, SCREW YOU, EAT A DICK, I’M NOT PAYING IT.

2:01pm Edit: Janet Dyke from Alameda Hospital just called back to clarify my home address and waive the hospital bill. She apologised for the bill collectors. I told her I’m not afraid of them and knew I’d get it all straightened out with her office. This is the same woman who I spoke with way back in April, who got me to Dr. Otani, the director of E.R.
She remains very empathetic and upbeat.
I double checked and yes, I do have a current valid care plan on record with the hospital, so if I take my meds and still have crushing pain, I can go to E.R. and receive an injection, no questions asked, and be made comfortable. They have all my documentation on file that I sent them to set up this care plan back in April.

MISSION FECKING ACCOMPLISHED.

The pain got worse today and I asked to work a half a day.

I’ve had symptoms for two weeks leading up to today and was positive that I was going to be early. Nope! Not early. As a matter of fact, I might be late. However, the pain is kicking my ass as if I’m menstruating. Such is the life of a person who suffers from Endometriosis.

I was literally holding on with dear life to the railing on the stairs as I carried the baby I look after upstairs to her play room, because the pain and weakness had gotten so bad. I was gasping from sharp knifing pains zipping through my ass and across my pelvic region. Every time I gasped, the baby spun her head and just looooked at me. Poor kiddo.

And the irony of that? Just this morning I had a burst of “Hey! I’m okay! I feel great!” and took the baby for a stroller ride around the block.

“Around the block” in this neighborhood means steep hills.

Well, on the downhill back towards her house, my legs went weak. That’s always the first sign for me that the pain is going to be bad, and soon.

I took it VERY slow.

On the next uphill as the last leg of the journey back to her house, I was okay on and off. Got her back into the house and that’s when the arse pain started. When the baby woke from her nap, I wanted to cry, because I knew picking her up was gonna kill me.

Babies are good at sensing when something is wrong, too. She gave me a worried look and I had to force a smile and reassure her so she’d not start crying. Poor babies are so empathic that way.

And upstairs we went with me holding on with dear life to the railing as I said earlier.

Thankfully, I did get my half day – her daddy came home early to relieve me. Now I dig in for a very long couple or few days of worsening pain and staring at the walls high on drugs (and not even the good kind). You’d think with this downtime, I could get some shit accomplished. Oh hell no. I can’t focus for anything. Tylenol 3 makes me drooly and out of focus.

Speaking of out of focus, that’s what the world looks like when I’m in pain from the Endometriosis.

Everyday people see this:

I see this:

Like another friend in pain right now, I’m totally caving in to cravings, which will ultimately make the pain worse. That’s one of the biggest challenges we face – and for me anyway, I get to a point where I think,

“screw dietary restriction! I’m gonna die someday anyway, who knows when! Might as well live for the now!

I don’t want to meticulously monitor after my diet until all I’m left with is rice porridge because everything else sets off the Endo, or worse, until my body goes ahead and gets cancer anyway like it’s predisposed to with this illness.”

So it’s hard for me to focus when I get in a funk like that. Say like, right now…

Well I wanted to get out to the club for the undead wedding themed party last Friday, but instead, the snotmonster cold I’d been fighting for a week finally caught up with me and killed me dead.

I took it easy for most of the weekend, while trying to get as many chores done as possible. Ugh, no more time, time running out. AIEEEE.

I’m tired of hemorrhaging money. Please, make it stop. Had a minor meltdown at B over this last night.

The cough and snotfest seems to have stopped as of today. I’ve coughed only twice. I spent the weekend drinking tea and water and eating assloads of vitamin C, vitamin B, cal/mag and zinc vitamins.

Although I ran errands on Saturday and Sunday, I feel like it was wasted time, all for naught, nothing accomplished. So frustrating.

The other monster I’ve been trying to keep at bay is the Endometriosis. I’ve exhibited symptoms for two damned weeks now. I blame myself for having a shitty diet because I’ve been under stress of starting a new job and continued “hurry up and wait…GO! AAAIIIIEEEE” on all the chores that need to be done before the end of this month.
When I woke up this morning, the pain was there. I checked myself every ten minutes but no girl do0m. I waited til the last possible minute to get dressed and go out the door cuz I wanted to be sure I didn’t have to call in sick. My body gave me the shaky ‘sure, you’re alright’ nod, and off I went to work, zo0m.

It’s been a mellow day here with the baby. I’ve not taken her on a stroller ride outside. My body is shutting down. No energy. So tired. Knees have had it. Pelvic region aching.
I’m still on Motrin twice a day since last week.

I appear to have the sticky sinus death that’s going around. This morning I nearly puked from all the hacking I was doing. Ran my throat raw and bleedy. Had no want of breakfast as a result of course.

I should’ve listened to my friend and started flushing my ears when they got stuffed a couple days ago. I’ve been trying to fight this thing since LAST Thursday. I can still flush the goo out of course, just a couple days late to the game is all.

Been chugging green tea and still taking vitamin C and zinc pills. Head hurts despite having eaten at last. Dizzy. Cold. Tired.

Amy Galbraith, 28, must now wait at least six months for her surgery to be finished, delaying her plans to start a family.

She is also coping with lower abdominal pain and painful menstruation because of the endometriosis.

THIS TREATMENT OF WOMEN IS UNACCEPTABLE IN THE 21ST CENTURY.

If you think this is an isolated case, you’re sadly mistaken. Go seek out any Endometriosis forum on the web and you’ll read many, many horror stories like this one. I’m so pissed off. Total flashback to April of this year when I went to E.R. in crying pain after DILAUDID (hello morphine derivative!) didn’t stop the pain, and they let me sit there for over an hour, and then as the pain wound down, they subjected me to a pelvic exam against my protest, which brought the pain all over again.

$#^%^&*%&*%#@$$#