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

A Happy Camper

That's right "a Happy Camper." I used to ask someone how he was doing every time I would see him and every time he would reply, "Oh,I'm a happy camper." He never missed a time. Some thought of him as a grouch, I loved him and he may have had it right. Everyday he did what he loved and was happy for it. That's what I have been doing...Writing, writing, writing....about anything and everything. and my grandson turned two this weekend and we had such a great party at his other grandparents home. We socialized from all ages and even had water ball fights in the back yard..lots of laughs and hugs..right down my alley. My effort to reorganize my home this summer while I can sell, give away and burn is going well. I want it all done before winter sets in. You might think I have plenty of time but you don't realize just how slow I move. I got a new vacuum that moves with a finger so I can push it with my wheelchair if need be. My PDR'S for my Parkinson's, as of this morning, are 22, which is fantastic! and this weekend I will be going to my first class reunion in 45 years...I don't know what has happened, but on returning from New York a new fire seemed to have been lit and I just have really been busy but in that busy getting things done too. All of this behavior is so not Parkinson's. We procrastinate and sleep alot and feel down and hurt, all of which leads to an under productive day. No matter what the reason I hope the Lord continues to let me "Camp"on this campground surrounded by my friends and loved ones...I am having a blast Pokie

"Do you Always Shake Like That?"

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Isn't it odd how things happen? When I had a seizure in October of last year, most people including me thought what else? Parkinson's Disease has racked me with pain for four years and nothing they seemed to give me would help. My sleep was impossible to find and my Neurologist finally sent me to a Rheumatologist who decided I had Rheumatoid Arthritis., and more medicine was sent my way, but nothing could keep me out of the wheel chair. One doctor called me a "Neurological Mess" and another said,"You Walk like an Old Lady". I felt like an Old Lady too. But God would not let me lay down. My nights were spent on the couch or in the recliner and in two hour spurts I would sleep, then write, sleep then write, until exhaustion set in and I finally passed out, back on the couch. If I was lucky, my 85 year old mother would not catch me sleeping during the day because if she did she would get right in my face and say"Are you ok?" which proved only one thing I had a good heart if nothing else because the fright from being awakened from a sound sleep didn't kill me. Then came a Neurologist in this area who insisted on heavy seizure meds and the muscle pain from the Parkinson has just about went away.....Now I have a hip that needs to be replaced but that is a totally different pain than Parkinson's....Parkinson's pulls on every muscle and bone in your body. If the pulling and spasms from the pulling didn't wear you out the pain would. Thus I have arrived at a new split in the road and wonder what I will find when I have my hip done. I would jump at this BUT in three weeks I am on my way to something I plan for all year.....The Unity Walk in Central Park. If I have compulsive behavior it is centered around this. everyday and every hour seems to be consumed by visions of NYC and people I have met there. If this wasn't enough there is the book with people to call and books I want people to sign. I walked into the doctors office the other day and a lady said."Oh, dear, do you always shake like that?" "Yes" I said. "I have Parkinson's" and she ducked her head. I just walked off laughing and thought to myself, "I've never been happier in all my life, to which she probably thought,"yes, and she's crazy too." love Pokie

PROJECT MANAGER

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There is occasion when even I must stop and say some things that have not been said to some one who is always the strong one, and sadly has always been. At the age of eleven, I remember her listening to a conversation I was having with my doctors nurse, "When she said almost to her self, oh no not again, please!". At age nine she had been thrust into having to take care of children while still a child herself, when her brother was born and it was only mom to take after him when mom went to work.....dad didn't do such things and as the plan worked out that little brother was sick for most of his childhood. Then there was divorce and that left my daughter and I , mothers to small kids five and three Even at that time she worked harder than most , stacking wood and cleaning house plus keeping her studies at A and being in sports. All of these things and many more were a part of her world and what was her mom doing but bringing her unwanted babysitting jobs that didn't go away. She was a second mom and soon learned how to make and carry out the large decisions as an at home project manager.

Now She is grown and her family of two are Brendan, age nine and Haley age sixteen. She is a very good mother...much better than me. Sometimes we neglect to tell our daughters and sons this . Just when her life could be no fuller with family in full swing, her job becomes mobile and traveling is a big part of what she does......She does seating for stadiums, the Pittsburgh Penguins, the Orlando Magic, The Kansas City Sprint Dome, and many more. In this field she is one of a kind just as she was in early sister and brother motherhood and later actual motherhood and being a balancing wife.

All this would be enough, but in her prime she is presented with a new problem....a social mom, one who quite often can not drive to her destination. There's Walks and conferences and doctor appointments not to mention all the little things missed like a loaf of bread or a bag of dog food. She delivers these promptly and never says a word. She always reminds me that she's not a hugger and emotion is not her thing.

Well Heidi , My rock of Gibraltar, what can I say. I have loved you since long before you were born, when in Germany your life began.....And though those hugs are few and far between.... when they do come how ever so special they are and how honored I am to enter a room in this our small town and everyone knows you and truly honors and respects you. My alpha female, in this household you'll always be and just know that your mother will love you and thanks you from the bottom of my heart.......Maybe these travel times will allow us to see the times from before when we didn't rush so much.....Step up to the front my dear and take the applause. Your doing a fine job much better than me and when ever you might need me I hope always to be here beside you in every good way , because as I realized this morning how blessed I am that you were born a PROJECT MANAGER AND I'M IN YOUR CREW..... love ya Pokie Mom. Nee, Nay and such

Thank God For Recliners

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I never thought the day would come that I would hear myself utter these words but here they are, "Thank you Lord for this recliner."  I have been trying to adjust to some new seizure meds and the shakes are terrible.  In retaliation I retreat to the recliner where you can find me hours later sound asleep.  I realize I would not sleep if I did not need it but this is just ridiculous. There is no way I can keep up with this pill pace. The Arthritis doctor has me taking four pills once a week,.two in the morning and two at night, now if I can only remember what day of the week I took them in the first place.  The Neurologist has me taking one large pill twice a day and these small pills starting at 25 mg and working up to 300 mg. at bedtime. which would be ten pills.... meanwhile I have four sinemet and three requip to take along with one Hyzaar and one lipitor.....Now Please This is Rediculous....I think if you are expected to figure out how to take this and eat too you should be admitted.  You surely are not expected to function in todays society. My 84 year old mom has been HELPING ME ....really. She cleaned the front sidewalk yesterday and then we ate lunch which I had made with the aid of my wheel chair....making extra so she can snack if I am sleeping when she gets hungry.
There are some funny things going on here. I get my sleep machine next Wednesday, and really must be needing it. I woke up awhile ago and my cat was laying on my chest with his arms around my neck staring at me. Scary event for me but must have been scary for him also.
Surly I will get all of this straightened out soon.  It seems like an insurmountable task just to stay alive when only four years ago I was taking nothing but Tylenol.. Those who function outside the cronic patients world have no idea some of the things one must go through.  Every medication, even potassium must be checked as it comes from the drug store. Why? The color now may be the same and the sizemay be the same but they may be time release instead of regular and the dose is changed; and the triangle...you , doctor, drug store...did not get it straight. Then you take to much and your prescription runs out too fast and you get sick and the pharmacist says, "I don't know"  Meanwhile as you travel from new doctor to new doctor and the medications change, a drawer fills with medication that is never used in this day and time when people are going without because they cannot afford what their doctor prescribes.
As I ramble on through this and possibly make no sense at all, I realize I have the recliner to be thankful for and decide a glass of forbidden tea and a couple of cookies for comfort food will tide me over until the next pill time and maybe I will wake up in a better mood....love Pokie
 

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A Quarter To Three

It cannot be a quarter to three;

I've piddled all night and can hardly see.

Don't I know what the doctor said?

"You sleep seven hours in that bed!"

BUT

I shower and I change and I get all quite ready

and go visit dreamland and stay there a plenty.

BUT

Somehow I know that seven is just too many

So after two my eyes fly wide open.

I shut them but realize a curse it must be,

No sleep, No sleep, No sleep for me.

Wishing on a Star

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Do you ever get too old to wish on stars? Possibly so....Maybe when you get older not so many stars fall out of the sky for you to wish on because your time is running out for them to come true. I listened to the St.Louis news last night and believed them when they said last night was going to be the biggest of meteor nights from12 to 5 am and so as only a kid at heart would, I fixed my peanut butter sandwich on wheat bread with a small scoop of jelly and filled my thermos with cold milk and grabbed a blanket. It was three am and I was in the car looking for meteors, or wish able stars to me. It's a wonder the Bogey man did not get me, sitting on a deserted country road in the middle of nowhere waiting for this explosion of meteors to grace my view. Well I guess two is better than none and I cannot tell what my wish was because you know it will not come true if you tell. I can tell you it had something to do with a cure for a foxy disease that seems to be playing with me.I sat down there in the dark and ate my sandwich an milk and was able , by the grace of God to find the big dipper and little dipper. I thought this was a remarkable feat considering how long it had been since I had searched them out. As I laid there on my car hood, quite content, I realized just how funny it would have been if someone had been driving home from work and come up on me. It would probably been the determining factor to me being committed to a home. I pondered this thought along with the beauty of the night and the masterpiece God had made for me and decided I would be satisfied with two stars. Why should I get greedy in my old age? One would have really been enough and then one would have to decide whether I still have the patience to wait for my wish to come true. Well as I thought all of this over, I decided the old recliner would feel much better on my back and headed home. Another night another lesson learned.....don't be greedy just take the star you get.....love pokie