National Invisibile Chronic Illness Awareness Week

is September 12-18, 2011. As a member of the group, I am going to participate fully, so let the party begin! We start by answering the following questions:
30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Hepatitis C
2. I was diagnosed with it in the year: 2006
3. But I had symptoms since: 2005 (and subtle ones much earlier in retrospect).
4. The biggest adjustment I’ve had to make is: Not having the energy to do the things I was accustomed to doing.
5. Most people assume: I look well, and am therefore doing well.
6. The hardest part about mornings are: Waking up ill and realizing it is not a nightmare; it's real.
7. My favorite medical TV show is: I don't like any. As a NP, I'm too critical of errors!
8. A gadget I couldn’t live without is: My Kindle e-reader.
9. The hardest part about nights are: getting a full 8 hours of uninterrupted sleep.
10. Each day I take 6 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: Have tried a strict regimen, under doctor's supervision. While taking herbals, my liver enzymes skyrocketed so they are not for me.
12. If I had to choose between an invisible illness or visible I would choose: Invisible; it makes it easier on my family.
13. Regarding working and career: I do what I am able but know I could never hold down a full-time nursing career again. This is a huge loss that I grieve daily.
14. People would be surprised to know: That I'm a very happy person!
15. The hardest thing to accept about my new reality has been: Not being able to make plans that I know I will be able to carry out when the time comes.
16. Something I never thought I could do with my illness that I did was: Learn to slow down, relax and enjoy each moment. I led such a busy, hectic lifestyle beforehand that left little time for "down time." I now also have the time to fully deepen my spiritual life.

17. The commercials about my illness: I've only seen one and it is about getting tested for HCV.
18. Something I really miss doing since I was diagnosed is: Hiking long distances.
19. It was really hard to have to give up: my career.
20. A new hobby I have taken up since my diagnosis is: art, poetry writing.
21. If I could have one day of feeling normal again I would: Take a long hike & go backpacking with my whole family.
22. My illness has taught me: Who my true friends are.
23. Want to know a secret? One thing people say that gets under my skin is: "You look so good!" I know they mean well as I've lost a great deal of weight and don't look sick. But the suffering I went through to lose that weight is not something I'd wish on anyone.
24. But I love it when people: Call me. It means so much just to get a call, or simple card. It's about the little things.
25. My favorite motto, scripture, quote that gets me through tough times is: "All shall be well, and all shall be well and all manner of things shall be well." St. Julian of Norwich.
26. When someone is diagnosed I’d like to tell them: You have no idea of the horrors ahead of you, but I would never say that; they need hope and assurance.
27. Something that has surprised me about living with an illness is: how difficult it has been for our family.
28. The nicest thing someone did for me when I wasn’t feeling well was: A friend came to stay with me over a weekend when my spouse was out of town and I was feeling quite ill at the time. She gave me a manicure and pedicure!
29. I’m involved with Invisible Illness Week because: To raise awareness of invisible illnesses.
30. The fact that you read this list makes me feel: Like you took time to care.

Pain Care Bill of Rights

Whew! Storms passed. Roads are closed, trees down and deaths reported - none in my immediate neighborhood though. The worst is over so.....
I've been seeing a hospice bereavement counselor per my doctor's advice, and it has been tremendously helpful. She gave this to me recently.
Pain Care Bill of Rights
* The right to have your report of pain taken seriously and to be treated with dignity and respect by doctors, nurses, pharmacists and other health care professionals.
*The right to have your pain thoroughly assessed and promptly treated.
The right to be informed by your doctor about what may be causing your pain, possible treatments, and the benefits, risks and costs of each.
*The right to participate actively in decisions about how to manage your pain.
*The right to have your pain re-assessed regularly and your treatment adjusted if your pain has not been eased.
*The right to be referred to a pain specialist if your pain persists.
* The right to get clare and prompt answers to your questions takes time to make decisons, and refuse a particular type of treatment you choose.
Source: American Pain Foundation, National Hospice and Palliative Care Organization.

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!