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.