Wednesday, October 12, 2016

Day # 6

Day #6 on prednisone. Not even taking the dose prescribed as I am so sensitive to meds that 5 mg would be waaaay too much.

I took 1 mg for the first few days then bumped it up to 2.5 mg.

1 mg works great, eases my pain and gives me just enough energy to function.

2.5 mg has somehow done something to my radiation damaged taste buds and for the first time since 2008, I can taste things.

what a fucking cruel thing this is....


to be able to taste again but not be able to eat, in order to keep from gaining a shit can of weight from the prednisone.

just fuck you universe and your cruel games.

Friday, September 23, 2016

silently tracking the monster

The rheumatologist thinks I have myositis. He drew seven vials of blood to run a slew of tests.

I have been watching my online medical chart as they are slowly trickling in.

While its nice to have a the name of the monster that is slowly crippling me, I am still wrestling with it.

I had a huge flair in 2015 of these same symptoms. We ran some of the same tests when I demanded the doctor do so, All but two were normal.

I was in the early stages.  I am in tuned enough with my own body to be able to detect small changes.
I new over a year ago something wasn't right.

This go around with the lab work, things are cropping up, finally showing what I have been enduring.

All this is a two sided coin that keeps flipping in my head.

heads - we are getting closer to finding a diagnosis
tails - its a rare disease ...meds will be too exspensive
heads - it's not a fatal disease
tails - its not a fatal disease
heads - symptom respond to medications
tails - I have adverse reactions to the top two used to treat it

I am relieved that at last, its showing up in the blood work. Everyone who thinks I am just being lazy, or I'm too old, or too fat can kiss my ass.

and then the coin flips...

and omg, its showing up in the blood work. I'm going to be diagnosed with something I don't really want.

Fears of being left in a state where I can't take care of my self. Too sick to be able to be a functioning member of society. Too impaired to work.

A year ago at work I was able to work four days in a row with few issues. Now days I can make three, and that last night is only accomplished through sheer will power.

I work in a three story building. I used the stairs for exercise. A year ago I could go up to the top floor with only my legs starting to complain the last 6 or so steps. Now there burning and screaming after the first 6 steps. I find my self taking the elevator more and more.

I am struggling to get back up after I squat down. The day where I can't make it back up is coming.

I go back in early October to see the doctor again. I am quietly hoping there is help coming. My tolerance and patience for being in this much pain and discomfort is gone.

I have reached out for support and help like I have never before to help me cope with all this and to keep safe.

I have a good pit crew on my team.

Wednesday, September 14, 2016

Rheumatology appointment count down, one day left...

Extremely stressed about my appointment tomorrow with the rheumatologist.  (don't worry I am not going alone, have support person lined up to baby sit me.)

Using my standard set of positive coping skills I am taking care of my self. Go to the store and in check out line behind a elderly couple. Their  transaction is snagging up and its a long wait.

My pain today is in the GO-TO-THE-ER-NOW range. I am very uncomfortable standing. The woman turns to me and says:

"sorry it's taking so long. At least you don't have back and neck pain."

Gee, thanks lady for making my day so much worse with your faulty x-ray vision and crappy diagnosis.

Cause I LOVE being in "invisible pain"

I know the appointment isn't going to be a easy, quick diagnosis. It will be another step in the process of eliminating differential diagnosis, and continuing on the path to getting me properly diagnosed.

Top things I don't want to hear tomorrow.

1. There is nothing wrong with you.
2. It's your thyroid. - cause OMG I will snap a gasket if they put me back in that loop again!!
3. You shouldn't be working - well DUHH!!! don't tell me that shit unless your going to support me.
4. It's fibromyalgia. - (that's Latin for "We have no idea what is wrong with you")

Things I wouldn't mind hearing....

1. It's terminal - Yeah!! there is an end to this pain!!

Okay that is just sad. That my pain control is so outta whack that DEATH is more appealing then living in this much pain. UUgh.

What I am hoping for is ANYTHING that will help me maintain my current level of functioning and keep it from this awful deteriorating slide it's in. I need to keep working, I need to keep parenting, I need to keep living...and living at this moment, after struggling daily since May, has ZERO quality of life to it. I am ready to toss in the towel.

Tuesday, September 13, 2016

Rheumatology appointment in 2 days

Funny how my Doc always says "Let me know if there is anything I can do for you."
and I always say, "A hospice referral."
that she thinks I'm joking.

and how,
when she hounds me about getting therapy for my depression she always says, "being in chronic pain, you might need someone to talk to."

um, no I don't. I FUCKING need the medical profession to figure out what is wrong with me, and help me with the pain before my head succeeds in killing me just to get some relief from the physical pain.

Talking to and telling people about the physical pain your in does one thing. It makes people tune out because they get tired of hearing it and to deal with it they decide your making it up.

Same thing with being chronically suicidal. "Oh their always saying there going to kill themselves, they just want attention."

Our bodies and minds always have the danger alarm blaring in our ears 24/7. What seems like whining to you is us making a 911 call for help and no one is picking up the phone.

We know you can't cure us. We aren't asking for that when we cry out. Just take a second to hug us, or eat comfort food with us, or listen to us...just making a connection with someone gives us a brief second where it feels like someone is offering us a life preserver to hold onto for a second. Just give them your full attention and gently say. "I'm sorry your hurting."

I like to think of my husbands supportive hugs as a custom made straight jacket just for me.

I am making plans to stay alive after the Rheumatology consult.  To the mall for sweet cookies, and to buy some mugs. Comfort food and retail therapy. The mugs because they symbolize, life. The start of a set of in an intention to slowly get more over time.

And one must keep living to get more time.

I am terrified of what will come of all this.

Thursday, August 18, 2016


I think I have blogged about this before, not sure though. It's on my mind again.

Woke up this morning after a hectic stretch of 11 days with nutty-off scheduled sleep, sighed and said aloud to my self "common get up, you have to do those dishes." (which were many).

Sleepy husband opens his eyes and says, "you might have less to do then you think."

That dear man has stayed up last night after I went to bed and washed the dishes for me.

A gift, which I was, am very grateful for.

My body is every so slowly loosing functioning. The undiagnosed medical issue is eroding my ability to do all they physical stuff I used to be able to do.

We ran lab work this month and FINALLY there reflecting a problem. Have been referred to an rheumatologist to see if we can't finally find out what is going on.  Waiting on that right now.

In the mean time I am just in a horrible, horrible state. The physical issues are making functioning very difficult. My normal routine got scrambled so I could cover for a co-worker who needed time off. Resulting in two rotation of days off where I only got one day off. I absolutely MUST have three days off to recover between work weeks.

I just stopped trying to keep up with the house work. I couldn't sleep and was sooooo tired and exhausted.

Husband has told me many times if I need help to just ask.

But I don't ask.

My best guess why is....I don't want to be a burden.

Which is looming down in my future like a freight train.

I felt like a burden as a child. Made to feel bad when I out grew my shoes/clothes and cost the family money. I stopped telling them when my shoes were too small. Just squished my feet into them.

Grilled into me from youth..."if you don't work you don't eat."

Been working since I was 12.  Finding it difficult this summer. Makes me panicky.

I don't want to be a burden. I am feeling more and more like that as I am struggling with physical issues this summer.

My personal ideology of what my roles as a wife should be includes who does all the house work. I find it impossible to ask for help.

But asking is slowly creeping in.

"can you carry this to the laundry room for me?"

I need to work on this, cause my body is no longer cooperating with me. Started physical therapy for my neck yesterday. MRI showed it was worse then we thought.

Crap. I blinked and got old.

I'm fighting to keep from becoming a burden.

Friday, August 5, 2016

Skinned part three

* * * Trigger for dark imagery. I promise. I won't leave her there.* * *

* * * * She's a stubborn one for sure, dug in like a tic. Your not staying there little one, we are all going to pull until you come out. * * * *

As time passed, her trunk became saturated with murky ground water. She could feel herself ever, so, slowly, dissolving and dissipating into the dank mud around her.

I will just cease to be. She silently thought. No one knows I am here.

"Not true." came a voice through the murk. I know you're there."

She became aware of a scratching sound as the mud above her began to shiver. The rhythm of the movement became more frantic as two black paws worked diligently to dig her free.

At last she saw the face of the fox as he reached his snout down into the hole and grabbed her in his mouth. Tugging with some urgency to free her form the earth.

"still a freak" hissed the dagger tree. "You don't belong here."

The fox wasted to no time and whirled and took flight.

She was barely conscious of the burry pattern of browns and greens as they streamed passed her as she was carried away from the dagger tree.

"You can't ... grow ... when your the ....shadow of ....darkness." the fox panted as he stopped and set her down.

She rolled over and over in the soft grass, Her bark less trunk still soaking with muck and mire, twisted uncomfortably as she rolled. "why did you dig me up?" she said at last, as a few drops of the ground water squeezed out of her in grey tears.

His soft brown eyes smiled as he stood up and shook the last of the mud from his rich red coat. Without answering her, he placed a paw on her to keep her from rolling off. He began looking though the trees around then. His ears alert and focus on the task.

At last he picked her up and in a smooth jump began climbing up a nearby tree. With some effort he wedged her in the branches so the tree was cradling her. He said to her. "We are born to be carried. All of us carried in our mother's womb. All of us carried in the loving arms of family until we can walk. All of us carried when we are wounded and can't walk. All of us carried to our graves."

He jumped out of the tree and scratched a quick nest in the grass at the base of the tree. Curling up he tucked his face under his tail.

She tried to twist in the branches, but they held her firm. Irritated she snapped, "why did you dig me up?"

His tail twitched off his face. "You were not dead."

"But I wanted to be." she painfully moaned.

"That is why we are carrying you. Until your legs are again strong enough to carry yourself."


The wind stirred and began to rock the tree. She felt herself began to sway.

"Yes we" said the trees around her.

She fell into an exhausted sleep safe in the tree.

end of part three...


hmmm. story is refusing to be a trilogy. Okay fine, not giving up. I will find a way to get her out.

Tuesday, July 12, 2016

Skinned part two

* * * Trigger for dark imagery. I promise. I won't leave her there.* * *

* * * * I guess she is not coming out willingly...I better go get her... * * * *

Nestled in her earthy bed she slumbered silently for years until at last she felt the sun's light reaching through the dirt to warm her. It called and pulled at her until she reluctantly responded by arching her back and leaning into it. The light pulled her from her cocoon of dirt.

As she broke the surface her arms flailed and to she found leaves on them. The  gentle wind twisted her supple trunk and made her dance in the warm light.

"you don't belong here." the dagger tree next to her told her. "You belong with other humans."

Her little leaves drooped and fell off like tears. "I want to be a tree. To have roots and never have to move. Just to silently stand still and blend in."

"You will never blend in, you don't belong here." it growled, as it flexed it thorns her direction.

She felt her bark wither and flake from her trunk., until she was peeled. She slumped and bend down and laid flat on the earth and closed her eyes. "I don't belong with humans either." she sobbed.

"freak" it hissed slowly, then turned away.

She felt her little roots snap and release her from the earth. She didn't struggle. She laid still as the forest life shined happily on around her. Her tears moistened the earth beneath her until she slowly sunk below the muddy surface, rootless and lost. In this bog, the darkness covered her with its blanket and its weight pinned her down in a comforting smoothing, stillness.

She at last took a deep shuddering breath and was still.

As time passed, her trunk became saturated with murky ground water. She could feel herself ever, so, slowly, dissolving and dissipating into the dank mud around her.

I will just cease to be. She silently thought. No one knows I am here.

"Not true." came a voice through the murk. I know you're there."

end of part two...