Time is a companion that goes with us on a journey. It reminds us to cherish each moment, because it will never come again. What we leave behind is not as important as how we have lived. ~Capt. Jean-Luc Picard~
Wednesday, July 29, 2020
AGE LIKE A SEA GLASS
Thursday, January 26, 2012
Walk a Mile in My Shoes....
Someone shared this with me a while back and it says what maybe I try to put into words unsuccessfully each and every day. Though I tweaked it a bit..it pretty much sums up what I have been dealing with for the last five years.

Letter to people without chronic pain or unknown illness
Having chronic pain, chronic or unknown illness means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about them and their affects, and of those that think they know, many are actually misinformed. They can not see anything visible , therefore it must not exist.
These are the things that I would like you to understand about me before you judge me.
Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit or are here all the time, sometimes I’m not much fun to be with, but I’m still me– stuck inside this body. I still worry about my family, my friends, life and most of the time, I’d like to hear you talk about yours too.
Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes or an hour. Riding for 30 minutes today does not mean I can do it for an hour or at all tomorrow. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re paralyzed and can’t move. With this one, it gets more confusing everyday. It is like a yo yo. I never know from day to day how I am going to feel when I wake up. In most cases, I never know from minute to minute. This is one of the hardest and most frustrating components of unknown illness. You never know what is going to happen next. What is going to hurt or cause you pain.
Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying ” You did it before” or “oh I know you can do this!” If you want me to do something, ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally or get angry with me. If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do.
Please try and understand the difference between “happy” and “healthy.” When you’ve got the flu, you probably feel miserable with it, but, I’ve been sick for years. I can’t be miserable all the time. In fact, I do try not being miserable all the time. So, if your talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or, any of those things. Please don’t say, “Oh, you’re sounding better!” or “But, you look so healthy!” I am merely coping. I am sounding happy and trying to look “normal.” If you want to comment on that, you’re welcome.
Please understand that the “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need exercise, or do some things to “get my mind off of it” may frustrate me to tears and is not correct. If I was capable of doing some things any or all of the time, don’t you think I would? Do you really think this is the life I would choose for myself? Do you really think that I enjoy this being my life, my normal? By the way what is normal I no longer know.
Another statement that hurts is: “You just need to push yourself more, try harder.” Chronic pain or unknown illness can affect the whole body or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain and unknown illness may cause secondary depression (wouldn’t you get depressed and down if you were sick constantly for months or years and had no idea why?), but it is not created by depression or anxiety.
Please understand that if I have to sit down, lie down, stay in bed, that probably means that I do have to do it right now. It can’t be put off or forgotten just because I’m somewhere or I in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
If I seem touchy, its probably because I am. It’s not how I try to be or want to be. As a matter of fact, I would like very much to be “normal.” I hope you will try to understand my situation unless you have been in my shoes, but as much as possible, I am asking you to try to be understanding in general.
In many ways I depend on you all— people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you to help me with the shopping, cooking or cleaning. I may not be able to do any of it somedays. I may need you to take me to the doctor or to the store. You are my only link to normalcy. You can help me to keep in touch with the parts of my life that I miss and so wish I could have back one day. But please do not be upset or angry, because you have not walked in my shoes. And I can promise you these shoes are worn and beaten down now.
In the meantime, I will keep searching for a reason, a cause so then and only then, I can look for solutions and ways to hopefully be well once again. I can only hope that one day soon I can find some answers.

Saturday, October 22, 2011
Lost in the Land of the Undiagnosed

There are no fundraisers for me. No walks, no T-shirts, bracelets or ribbons. I am the lost within the lost. Aren’t we all in some respect? Trapped by our bodies and lost to the world. A Spoonie KNOWS what it feels like to cry in that hidden crook, lie about how we feel, and watch the world leave us behind. The feelings of loss lead us to a path into the lost.
But what of those that have no name? We have no answer for friends who care enough to really hear the answer to,” How are you doing?” We come across as liars. More so with each month, year, or decade that float by leaving nothing but a wake of pain in its path. We loose more and more friends. Those that were steadfast for 10 long years finally throw in the towel. We are convinced that these are the reason, which at least is what we think.
Okay, enough with the “our”, this is painfully with a self involved touch, about me. Perhaps I am alone in feeling this way.
I find kinship here in the boards. I know I am not alone in my suffering. And for that I will forever be grateful. But I admit the green monster that creeps in my shadow. He’s envious of the organized fundraisers and wishes he could have a name. He is Envy. And he makes an ugly person of me. On the days he sticks his head out, I am nasty. I may be snappy or rude, but I am ALWAYS jealous and angry about being jealous instead of supportive. Even writing it makes me feel like I’ve an ugly heart.
How come I can not find it in me to just be glad to have the sisterhood? The one’s offering an ear or hug or spoon. And like schizoid-typo, I am both. I wish I could walk for Lupus and MS; while in kind, I long for recognition for MY mystery. It is just as real, but how does one address the invisible? How can I get to healing myself when I’ve no idea what’s wrong.
It’s autoimmune they say. Those are neurological symptoms they say. But you are an enigma is the written diagnosis for me. Hurrah! I’ve not only felt lost behind those with a name, but I’ve lost my friends. I’ve lost some family. And most disturbingly, I’ve lost doctors who lost patience in my frustrating condition. *sigh* All loss, and lost.
Why on earth should I be jealous of a named chronic condition? Why do I crave it so? Perhaps I will never know. It just is. But my fellow Spoonies…I will always have love for you and hope to never feel lost in our connections!
Alas, I will continue to creep among the diagnosed. Hopeful for their comfort and financial gain to work that sucker to a cure! All while envious of their Names in the tabloid! These are ugly diseases, but as I’ve learned in here, always existing in beautiful carriers.
I Didn’t Know…

I didn’t know back then that life would change forever. I didn’t know what pain was then. I didn’t know the sacrifices and allowances I would end up making. I didn’t know my hair could hurt. I didn’t know that I would have to give up the things that brought me the most joy because I just couldn’t do them any more. I didn’t know how my limits would change from one day to the next. I didn’t know I’d have to fight so hard for what I need.
I didn’t know I could be okay with wearing socks that don’t match. I didn’t know I could cry beyond the point of tears. I didn’t know how strong I could be until I was forced to be. I didn’t know I could live for weeks on applesauce and Sprite. I didn’t know I could get lost in Target. I didn’t know I could crack a joke and laugh in the worst of situations because I just couldn’t cry anymore.
I didn’t know that nothing beats stupid comedies or veggie tales on a bad day. I didn’t know just how much pain I could stand. I didn’t know how desperate I would feel sometimes. I didn’t know how much I’d have to learn. I didn’t know how much I’d have to advocate for myself because there was no one else to fight for me. I didn’t know how good fuzzy socks feel.
I didn’t know I could love God and hate Him at the same time. I didn’t know sometimes prayer would be all I’d have. I didn’t know some of my best friends would be people I’d never met. I didn’t know that I wasn’t alone. I didn’t know doctors could be wrong. I didn’t know that there were others going through this. I didn’t know there was support.
I’d say I wish someone had told me all of these things back then, but I do know I wouldn’t have believed them.
by Agnes Reis
Friday, October 14, 2011
A Songbird Lives On...
Sunday, July 24, 2011
Tuesday, July 19, 2011
Just Trying to Cope....

Letter to people without chronic pain, chronic or unknown illness
Having chronic pain, chronic or unknown illness means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about them and their affects, and of those that think they know, many are actually misinformed.
In the spirit of informing those who wish to understand:These are the things that I would like you to understand about me before you judge me.
Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I’m not much fun to be with, but I’m still me– stuck inside this body. I still worry about my family, my friends, life and most of the time, I’d like to hear you talk about yours too.
Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes or an hour. Riding for 30 minutes today does not mean I can do it for an hour tomorrow. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re paralyzed and can’t move. With this one, it gets more confusing everyday. It can be like a yo yo. I never know from day to day how I am going to feel when I wake up. In most cases, I never know from minute to minute. This is one of the hardest and most frustrating components of unknown illness. You never know what is going to happen next. What is going to hurt or cause you pain.
Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying ” You did it before” or “oh I know you can do this!” If you want me to do something, ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally or get angry with me. If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do.
Please try and understand the difference between “happy” and “healthy.” When you’ve got the flu, you probably feel miserable with it, but, I’ve been sick for years. I can’t be miserable all the time. In fact, I do try not being miserable all the time. So, if your talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or, any of those things. Please don’t say, “Oh, you’re sounding better!” or “But, you look so healthy!” I am merely coping. I am sounding happy and trying to look “normal.” If you want to comment on that, you’re welcome.
Please understand that the “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need exercise, or do some things to “get my mind off of it” may frustrate me to tears and is not correct. If I was capable of doing some things any or all of the time, don’t you think I would? Do you really think this is the life I would choose for myself?
Another statement that hurts is: “You just need to push yourself more, try harder.” Chronic pain or unknown illness can affect the whole body or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain and unknown illness may cause secondary depression (wouldn’t you get depressed and down if you were sick constantly for months or years and had no idea why?), but it is not created by depression or anxiety.
Please understand that if I have to sit down, lie down, stay in bed, that probably means that I do have to do it right now. It can’t be put off or forgotten just because I’m somewhere or I in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
If I seem touchy, its probably because I am. It’s not how I try to be or want to be. As a matter of fact, I would like very much to be “normal.” I hope you will try to understand my situation unless you have been in my shoes, but as much as possible, I am asking you to try to be understanding in general.
In many ways I depend on you all— people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor or to the store. You are my only link to normalcy. You can help me to keep in touch with the parts of my life that I miss and so wish I could have back one day. In the meantime, I will keep searching for a reason, a cause so then and only then, I can look for solutions and ways to be well once again. I am not willing to give up ..I can only hope that one day soon I can find some answers.
Monday, July 18, 2011
Comfortable in Your Own Skin
This weekend my son Rhett competed in his first bodybuilding competition. It was a SNBF event held in Gainsville, Georgia.
Per their website ...
The Supernatural Bodybuilding and Fitness Organization (S.N.B.F) was founded in 1996 and is a 100% Drug Free Organization. It was primarily organized to help individuals and/or businesses to focus on healthy lifestyle programs, physical fitness activities, personal empowerment sessions, and spiritual coaching provided through Workshops, Seminars and Competitions. As Drug Free Athletes, we believe the Natural athlete should have a fair place to compete and we have been Blessed to be able to provide this avenue for these athletes. All judges have a background in the fitness industry ranging from natural bodybuilders, doctors (chiropractic and medical), fitness competitors, aerobic instructors, personal trainers, and a variety of ex-professional athletes and many more.
Rhett won the LW Novice, Novice Overall, Men's Open Short Division and battled hard in the Overall finals. Not bad for a first time out and according to him his "only show."
He has worked hard to get himself ready for this show but it did not just start a few months ago. It started many years ago when he was a young kid. Rhett posses something that is rare and special in this day and age. He has the discipline, work ethic and desire that most neither have or strive for in our society. As an athlete all his life he has always had to work harder than most . But the desire to always do his best has been in him from the time he was a small child. From the first time he strapped on the catchers gear behind the plate as a small six year old to his final football game in high school he always given his best. He was always the little kid that had to work harder than others to excel.
He has worked out from the time he entered high school, but over the last few years he has taken it to the next level. As he has told me many times "working out is not work to me it is part of who I am", he enjoys every minute of the time spent in the gym.
A few months ago he decide he wanted to enter a bodybuilding competition just to say I have been able to do that. Yet, as he does everything else, he poured his heart and soul into the preparation. He also wanted to make sure he was competing in an all natural, 100% drug free event. Not an event that not only allows 'steroids" but basically encourages it by the fact that is what everyone does to compete.
Many kids and teenagers go through a stage of experimenting with drugs and alcohol but that has never an issue with Rhett. He has never needed to be part of the crowd or doing something because "everyone else is doing it" type person. His uncle was killed as a result of drinking and driving , something that had a huge impact on Rhett as a young child. Rhett has told me numerous times I will never put myself in that circumstance and he hasn't. He has told me in particular over the last few years, "I will not put anything into my body that is unhealthy, unsafe or illegal." He amazes me everyday with his character and integrity.
He has prepared over the last several months while working full time. going to school full time and still maintaining a 3.96 GPA.
Thank you to all the family and friends who came out and supported him on his special day He really appreciated everyone being there. I am so proud of the remarkable young man that he has become. Not only by what he accomplished this weekend but what he accomplishes everyday. He leads his life with a sense of purpose, goals yet at the same time enjoying life. I could not be prouder to call this young man my son. Am I bragging you bet....love you buddy! Thanks for making me so proud of you! I am blessed.
Friday, May 27, 2011
'I see you. I hear you. And what you say matters to me.'"

"I've talked to nearly 30,000 people on this show, and all 30,000 had one thing in common: They all wanted validation. If I could reach through this television and sit on your sofa or sit on a stool in your kitchen right now, I would tell you that every single person you will ever meet shares that common desire. They want to know: 'Do you see me? Do you hear me? Does what I say mean anything to you?'As I sat and listen to her speak these words really hit me and brought me to tears. This is the way we all feel. We want to know we matter, that our words are not falling on deaf ears. That we have some type of worth to ourselves and to others, that we are loved. And that we are loved unconditionally.
"Understanding that one principle, that everybody wants to be heard, has allowed me to hold the microphone for you all these years with the least amount of judgment. Now I can't say I wasn't judging some days. Some days, I had to judge just a little bit. But it's helped me to stand and to try to do that with an open mind and to do it with an open heart. It has worked for this platform, and I guarantee you it will work for yours. Try it with your children, your husband, your wife, your boss, your friends. Validate them. 'I see you. I hear you. And what you say matters to me.'"
This seems so simple, so why is it so hard? A question that haunts the very soul of those who desire to know this feeling of validation. Just to let them know... 'I see you. I hear you. And what you say matters to me.'"
Saturday, April 16, 2011
Life's Lessons
I've learned that it takes years to build up trust, and only seconds to destroy it.
I've learned that our background and circumstances may have influenced who we are, but we are responsible for who we become.
I've learned that we are responsible for what we do, no matter how we feel.
I've learned that two people can look at the exact same thing and see something totally different.
I’ve learned that no matter how bad your heart is broken the world doesn’t stop for your grief.
I’ve learned that you can keep going long after you can’t.
Sunday, April 3, 2011
Wise Beyond His Years
Dear Friends,
My name is Luke Sliwinski. I am 10 years old. I am a LCPL in Liberty Young Marines. I look forward to serving our country some day in the United States Marine Corps.
I have a HUGE amount of honor and respect our brave troops. It is because of THEM that all of us can live free. I can be what I want, go to whatever church or school that I want, and live safely. They are my Heroes! They sacrifice so much for all of us, and now I want to give back to them.
I am sending this letter to you because I am determined to beat the amount of money that I raised at last years Walk For The Wounded. I raised over $1600 for our Wounded Heroes last year. This year - I KNOW I can beat that.
This year - I plan on walking in honor of a few of my Heroes. I will walk in memory of fallen Hero 1st Lt. Travis Manion. I walk in honor of my Hero Cpl. Todd Love. I will walk in honor of my Hero Cpl. Ronny Porta. I will walk in honor of my Hero LCPL Juan Dominguez. They are all Marines, and they are all my HEROES.
This years walk is on Sat. May 21st at Rosetree Park in Media PA. All donations go to Operation First Response – www.operationfirstresponse.org – a 501c3 organization that serve’s our country’s wounded Heroes with honor.
Here's what you can do to help me reach my goal:
Go to our “Walk For The Wounded” website at http://walkforthewounded.org/ - you can join my team named "HONOR COURAGE COMMITMENT" and walk with me, or you can sponsor my team by clicking "SPONSOR" search my name "Luke Sliwinski" and make a donation under my teams name.
Please help me reach or EXCEED my goal and give back to our heroes who have given so much for all of us!
SEMPER FI!
LCPL Luke Sliwinski

Young Marine LCPL Luke Sliwinski with his Hero Cpl. Todd Love

Tuesday, March 15, 2011
Frank Buckles To Be Honored At Arlington
8:00 a.m. to 2:00 p.m. Mr. Buckles will lie in honor for the public to pay their last respects. The chapel is not wheelchair accessible. During this time we will have a video feed that will be displayed in the Visitor's Center for the public that cannot access the chapel.
1:30 p.m. The line closes for public viewing. 2:00 p.m. to 4:00 p.m. The chapel will close to the public.
At approximately 4:00 p.m., the Old Guard soldiers will transfer Mr. Buckles from the chapel to a Caisson in front of the Amphitheater. Once this ceremony is complete the family will follow the Caisson to Section 34. Public attendees will be prepositioned in Section 34 where they can view the arrival of the Caisson and the interment service.
The graveside ceremony will be held in Section 34, within sight of General Pershing’s gravesite. The interment ceremony is open to the public. There will be wheel chair ramps for handicapped access to the gravesite for the interment service.
Mr. Buckles will be buried with full military honors, to include a caisson, escort platoon, a casket team, firing party and a bugler. The Soldiers conducting military honors are from the U.S. Army’s 3rd Infantry Regiment “The Old Guard.”
Below is a link to the obituary from Joseph Gawler's Sons, Inc.,5130 Wisconsin Ave NW, Washington, DC 20016 | 202-966-6400. There is an online Guest Book where message and condolences can be sent to the family.
Joseph Gawler's Sons -Frank Buckles
Thursday, March 3, 2011
The Death of Common Decency
The Death of Common Decency
By Frank RyanDo I Make You Proud....
Wednesday, March 2, 2011
May You Be Blessed Movie
Monday, February 28, 2011
And Then There Were None..Last WWI Veteran Dies..RIP Frank.
Friends- The last WWI veteran has gone on to join General Pershing to fight for eternity. Mr. Buckles has passed on. ~ David DeJonge~
Frank was born on February 1, 1901. At the age of 16, he witnessed the European theater of World War I, serving in the United States Army as an ambulance driver. In World War II, he became a Prisoner of War in the Philippines and was imprisoned for 39 months. After his return, Frank settled down in West Virginia to his humble farm, where he lived until his death on February 27, 2011, at the age of 110.
His life is a true story of American commitment and heroism, inspiring many to ask how they can help. Frank's family is deeply appreciative of these offers and attention, but continues to stress it is not so much about Frank, but all he represents.
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Saturday, February 26, 2011
Thought for Today...Kindness
You might be surprised ...at how much better you will feel not to mention how it affects those around you.






