Developing healthy outlets.

We are getting severe weather so I need to get off the computer soon, but I wanted to just briefly talk about the importance of having an outlet for the emotions that come with chronic illness. It's imperative that we each find things that work for us. Personally, spiritual development, nature, art are my best outlets but not quite enough when I'm struggling emotionally. I find that writing - poetry in particular - is a great way to release the emotional and spiritual challenges I face. So, I am taking a big leap here and doing something that's really not comfortable for me, but sharing a poem I've written. I've literally written hundreds, but they are personal and for my viewing only. Here's my little gift to you today and I hope you like it!

Virtue

04/15/08

A solitary feather floating on the still water

Her edges curled up, as if to embrace the universe

The constellations, the moonlight.

She was once an important part of a noble bird,

Now plucked from her former place of importance

She drifts along with the night sky singing its song.

What will become of her?

An intrinsic part of a soft home for hatchlings?

A treasured collection of a young boy or girl?

A device to tickle the chin?

Or, will she go back to the universe unnoticed

Her purpose fully known and complete.

A soft breeze folds up under her

And she is in flight, free to explore her next destination.

Accepting her final resting place, wherever it may be.

Knowing that while small, her purpose important

Whether complete or starting anew.

~ Nurse Practitioner Sue

Today's report

BIG FAT 0.

Now off to have some family fun at my daughter's birthday bash! Food, family, fun, bonfire and a daughter who is turning 29.....does that make me old?

Just blessed and happy I'm still here. To those of you who are struggling today, keep faith; you will have a better day ahead. I lost pretty much the whole month of June and now I'm having a reprieve, so don't give up hope!

My personal pain scale

After giving pain scales some thought, I decided to develop my own. I would encourage anyone with HCV (or any pain-bearing illness) to do the same. I learned that I'm far from the first or even 100th person to have done this; check out the pain scale (complete with facial expression scale as well) at: http://hyperboleandahalf.blogspot.com/
you'll have to scroll down and look for it on the right side of the page. Now there's a person who has a sense of humor!

But now to my own. When I showed it to my hubby, he thought it was a very accurate description of how I handle pain. Here goes:

Level What it means for me
0 Why are you asking? Do I look bad? Nevermind, don't answer that.
1 I think that if I sit down for 30 minutes everything will be okay.
2 I just tried sitting down for 30 minutes and things are certainly not okay.
3 I should think about taking some medicine. Hmmm, which one would work for the symptoms I am experiencing?
4 Got it narrowed down to three; eeny, meeny, miney, mo
5 I am going to try two meds in combination.
6 Darn, I've got to take all three.
7 Took all the meds I can take, am lying down and I still feel like I have the flu - only on steroids.
8 Am I in labor?
9 Oh right, I'm too old to be in labor (not to mention I'm not pregnant), maybe I'll just down one more of each pill I have prescribed and hope I wake up afterward.
10 I'm lying down, waiting to see a tunnel with a light at the end. I think I'm dying but I could be wrong. Better go to the ER.


I'm very happy to report at this very moment my pain is at a big fat 0, so don't ask me if I have pain!

Pain scales

I think pretty anyone reading this knows about those somewhat annoying pain scales where a medical professional asks you to rate your pain on a 0 (no pain) to 10 (worst pain you can imagine). The scales have been created after years of research that validate the accuracy of the method and the Joint Commission expects to see it when they accredit your medical facility. There is also the pain scale with faces for children, non-English speaking people and those who find it easier to describe using a visual. The face pain scale has also been scientifically proven to be accurate.

Recently, I read a blog that a woman wrote making up her own pain scale, which was pretty funny and a friend of mine sent me another person's personal pain scale. I'm thinking about making my own "how I feel each day" 1-10 scale that fits me. What do you think?

Chronic ilness & Isolation; a diagnosis

Have you ever called a person's home and someone answers, "may I ask who's calling?" while you imagine the answerer walking to the person for whom the call is intended saying "so-and-so is on the line" only to return to and say, "no, s/he isn't home" and there you sit on the other end wondering if they just didn't want to talk to you. I sure have and I try to think the best, but sometimes the feeling isn't good. Something like this happened to me this morning. Now I will admit to over-thinking tendencies but thus is the life of the chronically ill. People avoid you. I know this for a fact. Very few are comfortable -really comfortable- being around someone who is sick and dying even when they are doing normal things and having fun. The experts say to tell folks what you need, but I have not found that to be particularly helpful. When I tried to do this once, a "friend" told me she didn't want to be my friend anymore. I'm not trying to whine, just state fact. I'm strong enough to not let this get to me in the long haul, but it's annoying. It's not like I'm going to poke myself in an artery and spray blood all over you. Jeeze.

Good news is that I have been feeling better. It always helps when they find out what's wrong with you! I had an infection in my bile duct (second time) that spread into my bloodstream. That knocked me out from the 7th until last week, nearly a full month. I'm on the upswing now. I'm still weak and tired, but once again - like the Energizer bunny - I'll keep on going. It's a beautiful day and I want to soak up every second I have. I hope your day is wonderful as well!

A little piece of me is gone. Forever.

Nursing is an art: and, if it is to be made an art, it requires an exclusive devotion, as hard a preparation as any painter’s or sculptor’s work; for what is the having to do with dead canvas or cold marble, compared with having to do with the living body, the temple of God’s spirit? It is one of the Fine Arts: I had almost said, the finest of the Fine Arts.”
Florence Nightingale, 1868

Many tears.

Well, here goes

I had the adrenal stimulation test and it was normal. It wasn't too bad. Then I had an ultrasound of my spleen and liver, which you wouldn't think would be bad but it was very uncomfortable as they moved the hand-held device over my abdomen, pushing down on a few very sore areas. It left me with a tender abdomen. My doctor's office called last evening to say that the ultrasound didn't show anything shocking, just what it usually looks like (enlarged spleen, cirrhosis, etc.).

So, I have no answers for now. I am simply exhausted and still feel like something is not right. It's just not normal to get petechiae on your legs unless your platelet count is VERY low. Mine is low, but not that low. And other symptoms I am having do not have any explanation. So, now it's just wait.

After a rough evening, I slept well and feel a bit better today. I'm hoping that this was just a virus or flu or something like that. I'll keep you posted with new developments.