Weathered and Worn

See this old barn. She's standing so proud, though her supports are very compromised and she appears quite faded. She has taken repeated attacks against her exterior and still remains true to herself, and Oh, the stories she can tell. She is very large by general standards and in some places very disorganized, yet she stands proudly for all to see. I bet she never even thought of making a "bucket list" or giving up. I passed her two weeks ago on a journey to my past.
You see two months or more ago I had given up and was making lists of things I really wanted to do before I died. This is so totally not me but none the less I was there, making my bucket list.....Me the person who cheers everyone else up was failing and fast....I was just tired. I was tired of thirty some pills a day, I was tired of hobbling everywhere I wanted to go. I was tired of feeling ninety when I was sixty I was just tired! Though I was ready to check it all in, God must have had other plans for me. As he usually does, He sent me an option. Chuck it in and give up or look around and try again....I can say this much about the whole process....it scared me to death but now two months into it I have never been happier in my life.
As humans in God's world we really are not given the option to quit, no matter what. Much like this old barn I have been beat on and weathered many a very strong storm and YET survived to see the sunshine the next day. If there is one thing I have had all my life is faith. Sometimes it has made me appear to be a pie eyed "Pollyanna" and I have often been referred to as "just a little off" but it has gotten me to today. When God decided to show me what it was to be truly loved, he did a beautiful job, as always. I passed this barn on a journey to my past and came back to just stare in amazement at it's beauty. I hope I make you proud. Lord, were you to travel by me and just take a glance. I'll not give up again and I truly thank you for the faith you had and still have in me.
"No one can go back and make a new beginning BUT anyone can start from now and make a happy ending." and "We are never given dreams without also being given the power to make them come true" "Why do we close our eyes when we sleep....when we cry, when we imagine or when we kiss? Because, the most beautiful things in the world or unseen." Love ya Pokie

A Neurological Mess

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Where do you go from here? All day as I laid on the couch and tried to recouperate from yesterday these words kept sounding out in my head....A NEUROLOGICAL MESS.... My new Neurologist told me this yesterday. In his view point I have Parkinson's, Epilepcy, Sleep Apnea, Movement Disorder Problems, along with type 2 diabetes and blood pressure problems, not to mention the Arthritis and bone spurs .The left side of my brain is blocking the right sides sparking and so on. He is a thirty year veteran in Neurology and most of that has been as a department head and he let me know up front he will probably refer me to someone else because I am over his head in problems.  I smiled and listened to what he said and I thought to myself.  Here we go again eleven doctors in five years.  Am I getting anywhere?  The advantage of this is, you become very good at judging quality. You see the newest of technology and your time becomes their time. There are some days I pray for no more doctor visits, no more runs to the pharmacy, no more illness...just quiet.

But then I return home and one of my kids has read my blog and posted a comment.  Someone has called and ask for help or information. Someone needed cheering up and I was able to make them laugh and everything bad seems to drift away to some unknown place. Me dealing with these diseases is not normal or maybe I am not normal.  My only concern now is please keep we walking. Fatigue is around every corner and depression could be his companion. Pills are my enemy in numbers and kinds. I look at them and try everything I can think of to get them down. Applesauce and cottage cheese seem to be the latest method I have.  I take a tablespoon of food with as many pills as I can put in there and swallow.  I am just trying to trick my brain into thinking no pills are in there.Most of the time it works This is where I am now, trying to trick my own brain into letting me live happily.

The better part is, there has become something so much more special in my life..For one my grandchildren sparkle on all sides. One is my grandson Ayden . He is rapidly passing me in motor skills and intelligence, but when he is with me he always keeps an eye on me and never puts me down.and if things get out of hand he will just come over and give me an unsolicited hug and kiss. You see he can crawl and run and I cannot.  He can lay and play on the floor, I cannot.  He has fine motor skills to open things and I have none.  But we have an unsurpassed love between us that all those diseases have not touched and the Neurological Mess makes no difference.

Where do I go from here, who knows. More advocacy work. More prayer for some cures. More letting people see me and realize my worth. Every patient who stays in the public eye keeps a thought of that disease in the mind of someone else. Every doctors visit I make and endure may keep my grandson from having to go to a doctor for this.  I don't know why I'm so blessed with all this but I believe it is to touch peoples lives and help find these cures. The only way I can help is through experience. I know first hand and therefore I can get on a "one on one" level to understand and help with the problems. No one has looked at disease this way. It has always been take a pill and come back if it doesn't get better and I'll give you another pill. After several kinds of pills the patient gets worse or better.  Better is fine, worse they give them more pills and usually pain takes over. This opens new doors to new pills and new symptoms and we are off into the crazy world of medicating illness, especially chronic illness. I will fight my Mess as long as I can and write all I can to save someone from ever having to join me in this Mess...love Pokie

JANUARY 1, 2009..... "ONE ON ONE"

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I do not see how anything can possibly beat last year but it must. I can not believe the happenings of even the last six months but they have happened and with every new day my life changes. I have to ask. Was I like Rip Van Winkle? Did I just sleep through the first sixty years of my life only to be rudely awakened at sixty plus to a world spinning around a hobbled intruder. I barely allow time to sleep because there are things to learn and places to go before the alarm clock goes off....leaving me on the other side of a beautiful dream. I am assuming if you survived sixty years of such stimulation you would be burnt out. Daily someone warns me slow up you will indeed burn out, yet the passion burns on. The places I want to go this year are already on the calendar and the stories I want to tell dance in and out of an already crowded living space called my brain. The things I use to do to occupy my time , now seem so mundane and pointless and the new interests keep calling me to come out and play. I am like a cat on the prowl. If there is a door slightly ajar, I must peak in. If I have a question I must find an answer. The word multitask has taken on a whole new life that has chosen not to include my past life style. There are appointments and meetings with people I would have never met, talking freely about a disease or a band of many diseases that seem to be showing up everywhere with no mercy on their victims. I am reminded today that only seven months ago it started with the statement I made to myself at three AM while on the Internet. "I can do this" Though I had never done it, nor was I suppose to, I knew I would try no matter what. My shroud is my faith and it buffers me from harm, it seems. Though I have my bad days as we all do, it seems a correction is made and I'm off again. The exaltation I feel is hard to explain. Now, in January, it is so hard to not travel to somewhere, after months of being on the road. The plans made last year will make for a very interesting 2009 and who would have thought that I would be making a difference. The point has been proven and that point is. ONE ON ONE WORKS. One patient helping one patient yields two patients feeling better and it just keeps multiplying until we find that covered up space where the cure lurks. I sit here looking at a picture that was taken of me boarding the plane at St.Louis Airport last April, going to New York City. I blew it up page size so I could look me very much in the eye. I can see the different person even then though I had no idea of the magnitude of things I would do on my own. Maybe that was just what God wanted the world to see. Me, a granny in her sixties, not owning stylist cloths, walking with a cane, blundering through from one place to another. I am subjected to all kinds in this but once again my faith pulls me through. I am a novice and very believing, but you have to be to do this. Money does run short but I always get through, If I am used in one place I'm needed in another and the faint at heart fall by the wayside. Seldom do I write just about me. It seems like such an "I" thing and very self centered, but here on January 1, 2009 my resolution is to physically attack each day as if it were my last and make a difference. I will make that extra phone call that will bring a needed idea to some place who has no ideas left. I will hug someone who has not had a hug in a long time. I will lend a shoulder to someone who needs to cry and I will listen.

Life is good and we as a country have a fresh start. Let's band together to make this land and world a better place for all that follow us. God gave us life. Let's make him proud. Live each day to the most and though they say never look back, sometimes the view is awesome over your shoulder.......love pokie