On these wonderful days of National Invisible Chronic Illnesses Awareness Week, I am given a chance to stop for a moment, and not only thank those in my life that have intimately helped me through the years of my surgeries, procedures, and the resulting and unrelenting pain; I am also looking at who has helped myself, and others; in the virtual world.
I have been so blessed to 'meet' many people online who have helped me to look at myself, deep inside, they have given me harsh words when I needed them, (for me to slow down!), or the simple words, "I understand." When a fellow Chronic pain/illness sufferer says that, I know they know exactly how I feel, and that can mean so much to those of us that are suffering. Even those of us that write online, that try to get to our computers to write what is in our heart and minds, have a great need for encouragement. This is where the 'other' CP and CI sufferers that reach out to one another makes all the difference in my life.
I know I have helped others. They have told me in long conversations that I was the only one they could tell a certain feeling or past experience to. Not even their friends, or family could be counted on to be non-judgmental-- as I was with them. I hope that my Blog has helped some...even if it was that ONE person that felt alone. Reach one, and I have reached out. I have hopefully calmed the fears of thinking that they are alone in this struggle of pain and illness. As we have seen, there are many of us 'out there'!
The woman that began this wonderful week is a lady named Lisa Copen. Lisa means a lot to me. I learned of her when looking into starting a 'Hopekeepers' group about 4 years ago. I had the 'Hopekeepers Magazine' sent to my Pastor, so he could begin to see how prevalent Chronic Pain and Illnesses are. Lisa began this idea also, to start a group, to reach out to others in pain. My heart was in it 100%. Yet my body was not to be so easy to follow my heart.
Nearly ready to start my own Hopekeepers group, then struck again by many acute bouts of my Chronic Pain, so high on the pain scale that I decided I was not well enough at the time to be the leader of a group, and the turnout was bound to be small, so I did not know what kind of help I would have gotten. I had to give that idea up. At least at that very time in my life.
Lisa is presently concentrating now on National Invisible Chronic Illness Week!!!! Go visit: www.invisibleillness.com for much more information on people and companies that make a difference, and how the public can become educated on the subjects of Chronic Illness, and Chronic Pain.
Lisa wrote a post that has resounded with me quite loudly, almost as if she knew I had just read her post, as my best friend and I were parking at the market, with me saying (for the ? time), "I really need to get one of the Handicapped Placards, but am terrified because I may 'Look Good' that day, and am not in the mood to be stared at by those that see me get out, no cane, (yet), no wheelchair, no cast." That post Lisa wrote needs to be read by everyone, ill or well. Let others see that not everything can be seen.
The post: "Can those with an Invisible Illness Park in the Blue Spots Without Others Seeing Red?" by Lisa Copen of Rest Ministries, is a great read, and oh, so true.
http://www.restministries.org/invisibleillness/thingstoprint/ii7_oped_canthosepark.htm
I applaud Lisa Copen for what she has done for us all, and may she and all the others I have met, continue to be advocates for those of us with Invisible Illnesses and/or Chronic Pain!
I wish you a low or no pain day!
I have been so blessed to 'meet' many people online who have helped me to look at myself, deep inside, they have given me harsh words when I needed them, (for me to slow down!), or the simple words, "I understand." When a fellow Chronic pain/illness sufferer says that, I know they know exactly how I feel, and that can mean so much to those of us that are suffering. Even those of us that write online, that try to get to our computers to write what is in our heart and minds, have a great need for encouragement. This is where the 'other' CP and CI sufferers that reach out to one another makes all the difference in my life.
I know I have helped others. They have told me in long conversations that I was the only one they could tell a certain feeling or past experience to. Not even their friends, or family could be counted on to be non-judgmental-- as I was with them. I hope that my Blog has helped some...even if it was that ONE person that felt alone. Reach one, and I have reached out. I have hopefully calmed the fears of thinking that they are alone in this struggle of pain and illness. As we have seen, there are many of us 'out there'!
The woman that began this wonderful week is a lady named Lisa Copen. Lisa means a lot to me. I learned of her when looking into starting a 'Hopekeepers' group about 4 years ago. I had the 'Hopekeepers Magazine' sent to my Pastor, so he could begin to see how prevalent Chronic Pain and Illnesses are. Lisa began this idea also, to start a group, to reach out to others in pain. My heart was in it 100%. Yet my body was not to be so easy to follow my heart.
Nearly ready to start my own Hopekeepers group, then struck again by many acute bouts of my Chronic Pain, so high on the pain scale that I decided I was not well enough at the time to be the leader of a group, and the turnout was bound to be small, so I did not know what kind of help I would have gotten. I had to give that idea up. At least at that very time in my life.
Lisa is presently concentrating now on National Invisible Chronic Illness Week!!!! Go visit: www.invisibleillness.com for much more information on people and companies that make a difference, and how the public can become educated on the subjects of Chronic Illness, and Chronic Pain.
Lisa wrote a post that has resounded with me quite loudly, almost as if she knew I had just read her post, as my best friend and I were parking at the market, with me saying (for the ? time), "I really need to get one of the Handicapped Placards, but am terrified because I may 'Look Good' that day, and am not in the mood to be stared at by those that see me get out, no cane, (yet), no wheelchair, no cast." That post Lisa wrote needs to be read by everyone, ill or well. Let others see that not everything can be seen.
The post: "Can those with an Invisible Illness Park in the Blue Spots Without Others Seeing Red?" by Lisa Copen of Rest Ministries, is a great read, and oh, so true.
http://www.restministries.org/invisibleillness/thingstoprint/ii7_oped_canthosepark.htm
I applaud Lisa Copen for what she has done for us all, and may she and all the others I have met, continue to be advocates for those of us with Invisible Illnesses and/or Chronic Pain!
I wish you a low or no pain day!
Shauna
"The Only Constant in Life....is Change."
OK, you totally sold me on sticking around at your blog with "Laugh at your pain"...it is the absolute only way. I have RSD and have gotten very experienced at playing Pollyanna's glad game ;)
ReplyDeleteI'm looking forward to your updates!
-Caf
Hello and thank you for your comment!
ReplyDeleteReading over your blog there are a couple things I really like.
You seem to have a terrific and positive attitude ...
The contacts you have made blogging have been important to you ...
Isn't it wonderful how these blogs of ours can enable so many to share, elaborate, cheer us on, and even help one another through pain.
Nice to meet you, and please stop back to "hollydale" again sometime :-)
Happy weekend,
Eric
I also loved Lisa’s blog. Shauna I learned years ago to get out of the car the best I can and not even look at people. Sometimes I need a cane and sometimes I do not. It is always in the car-just in case.
ReplyDeleteI would not take anything for the friendships I have made in the blogging community. You are certainly one of them. However, My Kindred Spirit, you know that.
I am glad to see that you and Eric are blogging buddies. He is a wonderfully inspiring human being. And, I consider him a friend.
I hope you are having a peaceful painless weekend.
Be well
Dear Caf,
ReplyDeleteWow! We think alike on the humor subject I see....it is the 'mask' we learn to wear--in public, around our co-workers, bosses, even our family members, that can become dangerous if we don't keep a tight eye on it. I understand the Pollyanna ideal and sometimes it is easier to go there, than to deal with what we must on a daily basis! YOU know what I mean. ;-)
Gentle Hugs, and thank you for stopping by!
Shauna
Dear Eric,
ReplyDeleteI've seen you here before....sneaky!! ;-) I was going through my favorite lighthearted Blogs, and of course I had to stop by yours...I was just having fun, really needed a break from the serious things in life, and my pain. Must say that 'Olga the traveling bra' has got to be one of the best SN's I've ever seen. I laughed so hard at you 3 bantering back and forth. THANK YOU for the laughs ERIC. Kind of goes in line with what Cat said above!
And McKay knows her stuff, but you already knew that eh?!?!?!?!
I'm glad to hear feedback in that you can sense my (somehow) positive outlook, (I sure try!), and that I really have made some very close and special friends on here, our Blogging World.
Thanks for the laughs. You may not know just how much they are needed in the life of one who may only be able to concentrate on their pain; until some really decent and superior writing can help us to escape this world for even just a moment...and giggle in that second of time....not focus on the unrelenting pain.
Hugs,
Shauna ;-)
Hugs right back at cha!!!!!!!
ReplyDeletesee?? POSITIVE :-)
My Dearest Kindred Spirit,
ReplyDeleteWhat can I say? I am a bit dumbfounded by your recent findings re: our postings. Just too much!!
Anyway...you are so right about Eric, and that just being able to be cheered up, not read or hear of negative things from anyone for a moment; fly away and leave here for awhile...how important to us is that? I consider it now one of my modalities in my Pain Control Program. Seriously seeking out laughter in my life. I am blessed with a son who keeps me laughing, and I am sometimes amazed at the quickness of his wit. He is rarely a 'downer', usually has a positive thing to pick out of a conversation to focus on, and when asked for advice, I feel as if I am talking to an old soul.
If we seek out these people, and intentionally surround ourselves with positive, happy people, we are only adding to our arsenal of ways to deal easier with our pain and illnesses. The last thing we need around us, in our lives; is negativity, selfishness, and no sense of humor!!
I admire you honey for your parking in the blue space and just ignoring people if you didn't pull out a wheelchair. In fact, have you ever considered that the Universal sign used is a bit one way on the disability scale? Not at all any put-down to those in chairs, they NEED that space; but there are many other people who need to use that space who are not in chairs. It gives the public a reinforcement in the belief that ONLY those in chairs should be able to park near the stores. Another hit against Invisible Illnesses eh?
We will keep up the fight girl, and I know now to rest along this journey. Thanks to some real and kind words from a good friend. ;-)
Shauna
huggy huggy Eric....btw did you ever figure out my code?? No?? Oh, oops, maybe that's b/c there WASN"T ONE!!!!!! ;-)
ReplyDeletePositive?
Wink
I did in fact figure out the code.
ReplyDeleteIt said, " Blogging, and LIFE for that matter, can be so great sometimes"
God bless :)
Shauna,
ReplyDeleteI recently obtained a parking tag. I don't use it all the time. I save it for the really BAD days.
A friend of mine has a husband in a wheelchair. She has had people scream at her as she got out of her car about to take his wheelchair out of the trunk and assist him into it!
Before she could even reach the trunk to get the wheelchair, people have yelled at her (various things).
She is ***NOT*** one to take things like this lying down and has given these people a piece of her mind while simultaneously removing his chair from the trunk.
After hearing her stories of strangers yelling at her, I was a bit nervous about using a hangtag myself.
However, I have NUMEROUS chronic (invisible) illnesses and I reached a point where it would be foolish not to have a tag for those BAD days.
Thankfully, I haven't had anyone yell at me... yet. It would be very upsetting to me!
It's funny about the eye contact mentioned above because I have made a point not to make eye contact with anyone between my car and the store's door & back again.
Somehow I instinctively felt this would reduce the chance of someone yelling at me.
Lord have mercy on someone who dares to yell at me because I may just stare them down, list my illnesses for them and make them feel really mean, stupid, and ignorant for judging me when they don't know me at all!!!
It's wonderful that there are PSAs to remind people not to illegally park in these spots. I think, though, that the public needs to be educated on these same PSAs that not everyone who needs these spots and is LEGALLY using them has a chair. If someone has a tag, a doctor has authorized it!!
I always get a little butterfly flutter in my tummy when I put that hangtag up... worrying that someone may confront me.
If it happened in front of my daughter, I'd be especially upset. It might keep me from losing my temper if she were present, though.
I'm hoping it won't ever happen but I know the odds are against me. I hope that if anyone does ever yell at me, I can take it as an opportunity not to lose my temper but to EDUCATE them!!!!
That is my goal if I get confronted... to educate the person so they never confront someone like me again!
Maybe that is one way to generate awareness about invisible illnesses.
I'm all for turning a negative into a positive.
Lisa's article was great. Thanks for the link & the great post. I always love your posts!
Jeanne
Jeanne,
ReplyDeleteThanks hun for a great comment! I agree with the education part, when you are truly turning a negative that could be handled one way, with you yelling back, etc., to the total opposite of you offering maybe some pamphlets to people and tell them you are very hurt inside, they just can't see it. Simple. To the point, and let them learn on their own, a bit about Invisible Illnesses/Pain. I don't think my personal illnesses need to be listed to a total stranger while we are standing in the parking lot. Plus it hurts me to stand for a long time. LOL
I love your attitude. You can get great reading material in the shop over @ Rest Ministries. I've got a few T-shirts, had a precious keychain with Hopekeepers on it that got lost, :-( many of the books, and a few other little fun goodies! I try to help over there, they are a strong and influential group, led by Lisa. Don't know how much you can spend, but maybe we can get together with another gal we love, and get ourselves some EDUCATION to hand out!!! :-) Ahhh ideas...flowing from the energy of another comes an idea for the next...
Thanks for giving so freely of your energy.
Love,
Shauna
Eric,
ReplyDeleteOk, it was a code and you were right. ;-) Sometimes both of those things can be fantastic!! And you know that at times there are the occasional down times that everyone gets. It is your Blog that keeps those days much brighter with laughter...thank you.
Hugs,
Shauna