Making Sure Others are "Prepared" for your Chronic Illness During the Holidays...

This is a wonderful article by a great lady and writer, Toni Bernhard. I wanted to share with everyone. It was just on my mind how often others do not really understand that being chronically ill and having chronic pain issues does at times limit us, and it can come on quickly. Stress of having to do too much, be too much, and so forth and so on, can bring on a flare of high magnitude, thus putting you in the bed or worse for the holiday season. So, preparing family and friends is a very important part of getting everyone to understand your possible limitations. It may mean splitting up responsibilities, or making alternate plans. It could be that you must cut down on your "run and go" time and allow someone else to do errands, cooking, and other activities, rather than it be put all on you. I realize it is also difficult for you as the one that is chronically ill, to give up the things you used to do for the holidays. It is hard to give up baking those cookies, or having the entire holiday at your home. It could be you must order presents on line rather than be out shopping at the crack of dawn on "Black Friday". If you cut down on some things, allow others to do things, spend some down time resting, and allow others to help out, your holidays as well as your loved ones can be spent much better and you have your health intact. :)

Here is the link to the article:
http://www.psychologytoday.com/blog/turning-straw-gold/201212/educating-loved-ones-about-your-health-during-the-holidays

My Own Christmas Design and Decor for My Home 2012

My Own "Creation" of Decor for the front of my home. I have two huge "Planters" that my husband custom made on my front porch. I wanted to decorate them for the Holidays but was not quite sure what I wanted. Silk flowers but they are so big I needed something else. So, yesterday I wrapped up several "gifts" in some old wrapping paper, put on bows on them, and put those along with the flowers into both planters. I still have to add some garland today, but last night they looked so good with the lights on and the way the house looked all lit up from the street. I am quite proud of my own little creation:)

Memories Gone By and Don't Remember? Too many Holiday "Have to Do's" and Chronic Illnesses/Pain

Well, a little early, but here is a post from a group I belong to that I wrote in response to the "Do-Allers" for the holidays, and how it is almost impossible for some of us to "pace" much less "breathe"... Here is my post from my FB about pacing, breathing and not feeling guilty for us that are your "Do-Allers" for the holidays:

 It seems it is difficult NOT to go, go go, and then try to NOT feel the guilt behind it all. I am usually baking all kinds of candy, quick breads, cookies etc. to take to 4 of our neighbors around us. Then by now my tree has been up for at least 2 weeks, every decoration (and I make all of them) in place, flowers of graves of my Grandparents and my Dad, my "outfit" ready for Christmas Day, baked my special annual fruitcake, sent out all of the Xmas cards, written my annual Xmas letter to put in the cards, I also send cards "for the troops" for that group to get out and I do at least 25 or more cards, have the house clean from washing curtains to shampooing carpets, have my Xmas comforter, bed ruffle and pillows all out, have ordered our "annual" Wallace Sleigh Bell Ornament (we have 10 this year, so we have been together now for 10 Christmases), decided on exact plans for Xmas Day, and the list goes on.So, how do you "cut back" on things that you love to do? Like My Christmas letter, I almost "forgot" and had to rush to have it ready (this is usually at least a 3 page letter), cut out the neighbors??, now I feel they "look forward" to their treats, not clean??? Wow that would be almost impossible for me, LOL, even when NO ONE is really coming to our home, I still feel I "must" have the house spotless from top to bottom. I used to do all of this, plan for a party or two in between, work, raise two kids, go to college at night, and do all of my shopping NOT on line, but up in Dallas usually on a trip or two up there for Xmas Presents, and gosh the list yet goes on and on. IT is like Kristy said, that is my type of personality, and until a flare hits me like a brick wall and knocks me on my butt, it is so hard to "pace" or half the time "breathe". Then I worry about every bite of food I put in my mouth, because I am such a fanatic about my weight (and I can't seem to really get control of that lately, another "sore" subject for me right now), plus keep up with people online, sending emails, e cards, writing here, writing on my blog, still working on my book "Ramblings of a Seasoned Soul" to get it out and known to the public, plus working on two others.... my personality and Chronic Illnesses and Pain do not MIX!!! As I said, for me I think it is the overwhelming "guilt" that if I leave someone off, or stop doing something, or say NO, I will disappoint others and myself also, so it is extremely hard. I try to start "EARLY" but that is also difficult. The year gets away from you and is over with Xmas here before you can blink an eye. Funny, as kind of sad story from this weekend. My husband and I put up the tree together each year. Our last decor on is the Sleigh Bells Ornaments (10) this year, that we have, one for each year we are together at Xmas. Well, this year I wanted to make it fun...so I decided that each of us had to "tell" something about the year that was on the ornament. That began in 2003 with our first one. Well, for about the first 3 years, both of us could think of all kinds of good stuff we did and that happened, met, engaged, married, moved a couple of times and so forth, but starting about the 4th or 5th one, things got "blurred". We could not remember if this, that or the other happened in one year or the other...the closer we got to this year, the more difficult it got to "remember" what happened, and much of it was not the "good" stuff, but surgeries, doctors, illnesses, disability... I tried to laugh it off and say that it seems kind of a "good thing" if we do not remember. That means NO DRAMA! and life has been more on an even keel this past 6 years or so. I is also sad that life has passed us by that quickly...we honestly cannot remember exactly what happened, good or bad for the most part?!! I got frightened but did not tell my husband. For me is it the Brain Fog, memory loss, too MUCH CRAP in life, too ill, getting older...what makes me forget what happened in the last 5 years, yet I can remember things from our first 5 years perfectly?? IT really hit me hard. Of course he was not remembering very well either, yet still it was an eye opener for me. So, I think I am fearful to "slow down.” I fear I may stop and never get up to go again...

Memories Linger, As the Times Quickly Change

Another New Poem I wrote this morning... I hope you enjoy

As the Memories Linger, Times Do Change...

As the first truly “cold Days” of our Winter move in,
My memories linger how it was not so long ago; alas back then.
When gifts were came from local shops...
When dolls and toys in town were all you could get.
No so long ago, we knew no internet.

You could not find a million items to put around your tree,
Yet faces all lit up that fateful morn filled with joy and glee.
Santa Claus had found your wishes right along his way.
The gifts the elves “cobbled” at the North Pole were fine,
Yet not a one came from some fancy store online.

There were no computers, Kindles or electronic goods so you could view,
The hundreds of thousands of choices, for in your home town there were only a few.
Our local stores enjoyed our faces and provided items to light up a child’s eyes.
Like toys, games, trees and lights, yet everyone could was satisfied,
How Holidays brought families together without a laptop at everyone’s side.

No email, no cell phone, no texting was on those days,
We sent “snail mail” to our families members who were far away.
Times back then were more simple, as everyone can see.
We were full of joy, and not so stressed out,
About whether we sent all our “friends” on Facebook a Xmas Card out!

Alas, life changes, and memories cherished shall also come to change,
Our children’s lives are different and there thoughts later shall not be the same.
Later as they grow older, and us as the ones “passed away” are a memory.
They may think a I-Pod, Kindle, and all of those things for them have gone aside.
Santa brings things we’ve not dreamed of during those days to come in his sleigh ride.


Life changes, we grow older, children grow up, and they have kids of their own. Just a few short years ago, there was not a “computer” or internet. You bought all of your treasures locally, from the small Mom and Pop shops on Main Street. You may have made an order from the Sears Catalog, if you could not get what you wanted in town. Santa never disappointed, and I can remember fondly all of the beautiful things he brought me. New Barbie Dolls, and a Barbie House (that back then was card board), a table and chairs, tea sets, a high chair for my baby dolls and a small rocking crib. Beautiful dresses, pajama’s, and a pink robe, all were sparkling in my eyes on Christmas morning. I knew not a thing about a ‘Wii”, or “Play Station”. There was not a 4 story Barbie House. Barbie did not yet have a fancy car to drive, and tinker toys were all the rage back then, along with playing “Jax.” Yet the rivers of life flow on, and if we were to hold onto those old times, then we would become stagnant as people, as towns, and as a nation, and world. Thus even though times back then seemed much simpler, less filled with drama, conflict, fear, and hatred, we must move on and try to accept what is good during these current times. If we do not like something, then we do have the option of trying to make changes. I still linger in those times, when my plastic “dressing table” and even an Easy Bake Oven were the very best gifts in the world. I linger in the days when the most worry for me was learning my spelling words, and doing my school work, and watching cartoons. You never know just how great you had it, until those days have gone by... Rhia

New Poem "I Have A Disease"

this is quite different from my much of my poetry and writing. Although my writing is usually about the trials and tribulations of the illnesses and their horror at times, my poetry is more on a positive note. But, this one "arrived" yesterday and I share it with you. A "taste" of what my next book will have in it...

I Have a Disease

I’m floating in the clouds,
Then down on the floor.
I feel settled and content,
Then I want to rush out the door.

One moment I could climb to the mountain top,
In another fall into the sea,
One day I feel like a winner,
Another I can’t recognize me.

I am laughing at this illness,
Then crying in too much pain.
Days I hate the sun to shine,
Yet, others I hate the cold and rain.

Many don’t see it,
They don’t understand.
That the realms of this disease runs so deep,
Often you just don’t feel like making a stand.

You want to be normal,
To be a daughter, wife and Mom,
Yet you are anything but “standard”,
Your life has been robbed.

Of the days of freedom,
To do what you may,
All of those hobbies,
Somehow have drifted away.

No where to turn to,
No one can truly see.
That disdain is your new normal.
Is this how my life must always be?

Rhiannon Steele December 2012
Copyright 2012