RE: another.....thank you

[Guest guest]

Sandie, I'm so impressed w/your story. It's amazing what the human body can endure. Your mom sounds like a very strong person and I'm sure she's an inspiration to everyone, the same way you are. You know, Sandie, I wish I lived near you. I know we could be great friends. You think exactly the way I do. I printed your story and whenever I start feeling down because of my aches and pains, I will bring it out and be uplifted. Thank you for bearing yourself.

To: bronchiectasis From: Sunniesback55@...Date: Sun, 17 Feb 2008 04:09:55 -0500Subject: another.....thank you

Sandie,Your journal entry was like reading an inspirational book designed for people like us. You should consider writing a book! Send it to Oprah since she love books and suggest she do a show with Dr. Oz regarding chronic illnesses like ours. Other people who are suffering through their own chronic problems would be encouraged to hear from someone that is living with it and coping in the best way they know how. I mention bronc to other people and they don't have a clue what that means for us on a daily basis. I strongly encourage you to write more. That was wonderful!! /Deb

I've tried to write a book. I wanted to start out small to see if my journals were any good and would be accepted by the community..soooooooooooo..I would submit entries to magazines..health magazines..whole woman spiritual magazines..you name the magazine..I submitted..

Nothing..no response..that discouraged me and I gave up. The most I can hope for now is that my blogs on my website can possibly comfort someone who just happens to surf by..my hope that the journals i've recorded in my blog can maybe help someone realize they're not alone and someone understands..

I have several blogs listed on my website if you or anyone is interested in reading..

www.myspace.com/sunniesandie

It's open for public viewing..

Thanks for the encouragement

Sandie

Here's another sample

May 12, 2003

In 4 days I’ll be 53. The first thing that comes to mind when I think of the age “53” is dad. Dad died at the age of 53. Spooky number for me. A challenge, a test. Will I survive this year? Mom did..she far surpassed it. Mom’s the bionic woman. She’s struggled, suffered the agonizing pain of lung cancer. Mutilation of her body with skin cancer. The paralization and dementia of stroke. The crippling pain from spine injury. And still she goes on. As if driven.

She refuses to stop moving, living, loving, giving. In this year, my 53rd, I struggle. I suffer. Diagnosed at the age of 48 with a genetic liver lung disease named Alpha1 Antitrypsin Deficiency. Today I am 57..I'm infused every week with a enzyme replacement therapy my liver retains..my disorder is liver/lung..I am lung symptomatic.

To add insult to injury I was diagnosed with Bronchiectasis 3 years ago..secondary to Alpha1. Today, my energy levels are dramatically lower..my pain is more pronounced..it hurts not being able to breathe. Stick your face into the shower and try to breathe ..that will give you some kind of idea how I feel every day. It takes my breath away to walk..it takes my breath away to cry..it takes my breath away to make my bed, or vacuum, laugh and talk.

The flareups are unforgiving. My body aches down to the core..the joint and bone pain is incredible..right down to my toenails and fingernails. The fevers leave me restless and I have some pretty weird dreams on those nights ..I wake up disoriented and drenched from the night sweats.

I live on meds to help me breathe..I live on meds to help take away the pain..I live on meds to fight infection..I live on meds to help balance the good flora in my colon so the meds I take to fight infection dont put me 6 feet under..I live on meds to help the anxiety when my breathing gets so bad I start to panic and fear this is the last breath I will take..I'm afraid to be alone, sometimes for fear that I will have a spasm or go into respiratory distress and no one will be there to help me. . I live on meds and will live on meds the rest of my life, and as my illness progresses I will live on new meds..more meds..

I live life to the fullest..I try to anyway. It's getting harder and harder to do that as my illness progresses. Sometimes I feel like all I'm doing now is just surviving..getting through another day. At times, the ring around my butt from the pity pot is more than obvious, but that’s ok. I’m allowed. My pity parties don’t last long. Well, not too long anyway. I’m charmed. That’s what one person told me once. He told me I was “charmed”. When I asked him what he meant by that, this stranger, he told me he could see the light and promise in my eyes. He told me I had an ambience about me that was like that of moths attracted to an old porch light on a balmy summer’s eve. I liked that. I really liked that. But ya know..I can feel that light shining inside me. It’s the light of promise and hope. As long as I can wake, I can take a breath ..there’s hope. Where there’s hope, there’s promise. So it comes full circle so to speak. I have a very warm uplifting feeling inside me. And there’s my “silver. I used to be such a control freak. I used to be so out of control. When I didn't have anyone to control I’d fall apart. One day I learned how to not control. I learned to let go. I learned to go with the flow. And it’s really ok. It was then, when I learned to let go the panic attacks stopped. The anxiety washed away from me, free falling, like rain on a spring day. April showers bring May flowers, and Sandie was reborn. And now, today, I want my children to learn the lessons I’ve learned. I want my children to feel the incredible feelings I feel inside. What’s it’s like not to care if you don’t have the perfect life. What is the perfect life anyway? As far as I’m concerned it’s what you make of it. LIFE is what you make of it. I want my children to know what it’s like “not to care” if you aren’t the owner of the baddest, fastest car..or the biggest house..or the boat, or the clothes. It’s OK to not be top 10 on the most popular people list. Who gives a flying fudge anyway?

The more we want, the more we get. The more we get, the more we want.. That’s enough to drive the sanest of us insane. Keeping up with the Jonses’ syndrome.

Once upon a Sandie fairytale, I used to be one of ‘them’. I was trapped in the deep dark pitted recesses of trying to keep up. Trying to impress. What was I really doing? Filling one empty hole inside myself with “stuff” that couldn’t, wouldn’t really satisfy me. It wasn’t “stuff” that made me happy. Well, yea ok, maybe for the moment. But only for the moment. When the novelty of the new stuff wore off I had to have more, and more. Never quite satisfied, never quite happy enough. It’s ok to struggle, to do without, to go without. It builds character. Today, I am a happier woman. I am whole, yet not complete. I live a simpler life. I have less. I need less. I want less. I’ve found out what “treasures” really are. I’ve realized what’s really important and not “what” but “who” I cherish the most in my life. As long as it’s functional, I’m satisfied. If it gets me where I want to go, shelters me, keeps me warm in the winter, cool in the summer. If it feeds me, quenches my thirst, makes me feel safe and protected, if it pleases my eye, makes me laugh a deep, full gut wrenching belly laugh, if I can hear it chime, or if it makes me dance in my seat, if it mellows me out and soothes my soul, then I’m happy. These are the simple things in life. The pleasing, satisfying comfort creatures of life. My life, my emotions, myself don't come attached to a price tag. I bear no conditions to the love I give freely. I happen to “hate hate hate” conditions! I only ask that what I give be returned. To get love one must give love. To get respect one must give respect.

Criticism doesn't bother me. We all have opinions. And they come as freely as the assholes they’re attached to. I bear no grudges. My soul "sisfriend" told me once and I quote “your opinion of me is none of my business”. I believe in those words. Think of me what you will. It’s your opinion, not mine, and you’re entitled after all.

My darlin lil sis tells me repetitiously how “easy” I am. I replied back, hell, if I’m as “easy” as you suggest me to be, I’d be rich by now. Well, we see how true that is. But if she refers to ‘easy’ as vulnerable, then yes, I supposed maybe I am.

That’s ok too. Because that vulnerability is a part of my charm and ambience that so endears others to me, n’est pas? <smile>. I’m easy to talk to. I’m easy to please. I’m an easy mark and I love easy days. Nothing wrong with that friend. Today, almost 10 years after my diagnosis, my illness has progressed. Scared? Hell yea. Giving up. Hell no! I’ve lost a lot of lung function. But I still push myself.

The old adage, use it or lose it rings true. Same goes for these lungs which look more like Swiss cheese and mold lately. Nonetheless, they’re my lungs and I’ll push them to the max.

I miss the days of running. I walk slower now, but in that slow graze I miss less than I used to when I was hurriedly running here and there. I miss the days of playing on the beach, but I can still sit and watch the ocean beckoning to me, feel it’s cool crisp sea spray on my face. I miss the days when I could dance all night long. But I can still feel the power and the color of the music which vibrates throughout me. And I can still do one hell of a mean chair dance. I miss the days when I could perform gymnastics in bed with my lover. Today I’m a more sensual lover. Slower is better <smile>

I can still soak in the sight of trees and sunlight, birds, flowers, children playing, my grand-daughter telling me “nana I wuv you, can I come ova?” My grandson’s face lighting up as he reaches for me when I walk into the room. My grandson asking me questions about life. My son hugging me and telling me that when he grows up he wants to be just like me. That to me is what my life is about. My children. Watching them struggle, learning from their lessons, feeling their pain, relating. Remembering when I was their age. Trying to guide, yet standing far enough away, now, to give them space to get bruised and battered, then start over again. No one said it was easy. My heart has been broken a million times, but it always heals in the light of one of my children’s small successes. Today it hurts to live, but it hurts more not to live. Today I live with more discomfort and pain than I ever thought I would for the young woman of 57 that I am. I feel 30 on the inside, my body won’t allow me the luxury of responding to my heart’s desire. My body responds like that of a 65 year old. It hurts to walk up stairs. It hurts not to be able to breathe.The body aches and fatigue when I’m down with another infection. The desperation as I try to lift my weak body from bed in fear that I’ll pee myself cause I can’t quite make it to the bathroom. The fitful sleep as I battle fevers, it seems to never end. Week after week after week. But still, I refuse to give up. And I still can see the good in things. And I refuse to sit in the lap of negativity. It can get bad, but it’s never “that bad”. Nothing’s ever “that bad”. This too shall pass. I’ve made a lot of choices this past year. Some good, some not so good. But regardless of what choices I’ve made, they were my choices to make. And for whatever reason I made them, no one has the right to judge or take those rights away from me. I’m still learning my own lessons, indeed. And with each new day, I’ve made mistakes, but I’ve also achieved and conquered. I’ve been oppressed, but I’ve also been enlightenened. And again, all because of choices I’ve made. I’m not sorry for one choice I’ve made. I’ve learned to love in a way I’ve never loved before. I’ve loved 4 men in my life. All in different ways, but love nonetheless. For whatever reasons it did or didn't work out is insignificant. The gift of the part of them they gave to me I hold deep inside me and they’ll always be with me. Once Sandie loves, she never really ever lets go. I’ve also learned to love myself. And today I’m my own best friend. I’ve learned it’s ok to depend on myself and for all the family and friends who’ve “been there” for me, at the end of the day I have to look at that woman in the mirror. And it’s that woman in the mirror, thru my eyes, I must depend on the most to get me thru another day. And she will.Sandie ^i^

Never Look Down on SomeoneUnless You're Willing to Help Them Up

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