Gypsy Rose

When I was ever so small, my grand mother Brockmire took to calling me Gypsy Rose. I was one of so many grand kids she had and she use to sit me down in the afternoon when I could not take a nap yet all the others seemed to have no trouble and say,"Gypsy Rose, gaze into that ball and tell me your story" and I would come up with some concoction just anything to get out of a nap. That early in life I was able to run away and hide in a play world. I suppose I never stopped doing that. This could be a good thing in times of extreme stress. It allows the brain a little time to regroup. If the memory was to bad it just went somewhere in that brain where it no longer frightened me. My grandma believed my brain was special, though just a little off to the left and somewhere that got tucked away until yesterday. She lived a rough life. She raised 10 kids during the depression with a husband who in later years developed Alzheimer's. Grandpa was an unemployed carpenter and would just take off walking to Egypt Mills to find work. My grandma would call my aunt Luella and we would go to find him and give him a ride home. She knew me pretty well but never tried to change me. She died when I was sixteen and never got to see the true Gypsy Rose come out in me as my 'Ol Hippy days emerged. Travel always called me to the next adventure and I see now that even then my brain was not as others but luckily the "Rose" side stepped in to smooth things out. How could she have known this in her point in time? She had a staircase with an ever so tiny air opening into the dining room. I use to sit there and watch her in the kitchen. She'd never let on like she saw me and then would say,"You done dreaming?" "Come down for some koolaid." Sixty three years later I find people who excepted me with all my faults. In that day and time I don't think children were so harsh. One would take care of the other. Don't get me wrong. I have always been the caregiver, but some times there has to be a rose in the flower bed to keep people from walking through and smashing everything and I guess that has been me , on occasion.
My Neurologist tells me I was born with Epilepsy and should have out grown it but never did just developed more somewhere else.You know what, I no longer care. I am what I am in that flower bed and those thorns may come in handy fighting for my causes. The gypsy I hope will keep me moving....and moving and moving. Thank you Grandma Brockmire for all your insight into a little girl with freckles who just loved life real or made up.....love Pokie

DISGUSTED

I worked all day today on a project I should not have been doing and knew it. Cleaning out a closet in my bedroom and reorganizing in hopes of increased fung-shi and increased sleep. I started at 5am and as with true compulsive behavior, I just kept going till supper tonight. Two steps and sit down, Sit on the bed and vacuum the floor. Scoot the boxes with my grabber down the hall. i was so proud of what i had accomplished. This may be normal for some but not for me. I have my cloths all hanging in one direction and color coded NICE but when I went to lay down and try it out. I still could not roll over. It hurts my left arm. I was extremely uncomfortable. So after all this work which will render me useless tomorrow i am back to the couch. There I have no trouble getting comfortable can roll and my arm does not hurt....go figure. So I have a guest room now if anyone wants to come and visit love Pokie

Around the World in Purple

http://blogger.com/blog-formatting.g?blogID=7105864728904284820Blogger: Today With Though Purple day has come and gone I quess you know it will never be far from my heart. after last October seventh when once again I went down with a grand mal seizure which landed me in the hospital for a week and more tests and more medication. I had suffered two seizures in 1996 and actually died but had no more and assumed they had diagnosed me wrong....Wrong!!!!! As time goes on this year I hope to become more and more involved in the community and be able to figure out the many different kinds of seizures and their effects on the body and pass them on to you. I can tell you that Patientslikeme.com has open a new Epilepsy site that is thriving and I am a new member about to become a PRO 3 status which I am very proud of. That means I have filled and kept my profile and records up to date for a given length of time. The information I have already learned there is huge....more later love Pokie

From April To April

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Most ordinary people gauge their year in twelve months starting with January and ending with December. No not this silly lady.... My year starts the day after I get home from NYC. Well that is not totally true. Usually I just almost collapse for a week and then revamp and start again. So lets say April 31sth I start planning for the third weekend in April of the next year when I can go back to NYC and a new Unity Walk and a new set of challenges. I really believe it is just those challenges that keep me going. Paying rent for this life I have been given the opportunity to live. I still wander around in wide eyed amazement at the people I meet and the conversations I am able to have. At times I amaze myself with what comes out of my mouth to total strangers and yet they seem to understand.

The funniest part of all this is my children. The first year they were so against me going. They fussed and cried and fussed some more. I went by myself and had, as God wanted, a wonderful time out of harms way. I do realie not everyone can do this....but I do. The second year my oldest daughter went along saying she had a job she needed to check on in the area. She may have had one but her main jo b was checking out my friends and my behavior. Now this year both my daughters are going and my son would have came also but has to work....Why are they coming? Mainly because they are suffering from a huge case of denial as to what all their mother is into. Darn those moms. You give them an inch and they take a yard. Well regardless I am determined to show them a good time in the BIG APPLE and on Saturday I hope my Team has a once in a life time experience that cannot be topped. Who said PD patients could show no emotion and needed to be isolated in a nursing home? I would really like to have a little talk with him.....and also Colon Cancer Alliance and Epilepsy Foundation look out. I'm starting on you next..love Pokie

The Scrooge Syndrome

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Often older people are in great danger of developing the Scrooge Syndrome and the sad part is it is infectious and can be fatal. It starts with an extremely sober face. This face could scare a small child and convince an adult that conversation is not a good thing. It is often followed by a total inability to give . These people can give of nothing. Not just money, though usually their fortune has been made, be it large or small, but clothing and belongings. They have been known to starve and freeze to death with thousands in their bank accounts or at death their houses are found full to the brim with items others could have used. This is a fatal disease. It eats at the holder from the inside just like a cancer but can be cured by a simple act of kindness or giving which always leads to a smile which warms the inside of that person and starts the healing. This is a hard disease for patient and caregiver. The patient can not see his disease and how it is affecting him and is surroundings and his caregivers often forsake him in disgust.

My hope is that this disease does not spread in this time of hardship for as I know the giving of a dollar brings so many more in smiles and hugs. That dollar can feed a child that day. It can buy a second had book for a child, and buy transportation to the library for an outing. It can help in research for the cures to the truly deadly diseases, and last but not least lift the heart to heaven where God takes the burden away and the warmth begins to heal.

I have found the more I give the more I want to give and the easier it is to find the resources to give. When I think the well is dry and there is no money to be found, God sends more from the oddest of places. I never fail to look skyward and thank Him, whether it be a penny or a twenty and I pass it on. Some have called this "Paying Forward" I call it "Pure Joy."

My hope is that you have been warned of this impending disease and take all precautions to avoid it. Give of what you have to those in need. Go to a walk even in a wheelchair. Get out and let the public see you. Be proud of your years of survival and pay back with all you have. I promise you you will be rewarded and never get the dreaded Scrooge Syndrome...Love Pokie