I HAVE FRIENDS IN “STRANGE PLACES!”

The word  “Friend”  can mean varied things to different people.To me it brings up friends of old,like newly found old friends from high school,friends  who have been on journeys with me for extended periods of time. Friends that for whatever reason and I will take the blame for some but not all of lost friends.I have had a strange life,one that has seen much,done much and wasted much.I still have friends that I know I could call up in the middle of the night and come if I should need them.Odd,that except for one none of my children will even do that for me(which I understand)but have to be prodded to do so for their father.Sad,but along life`s long tedious,and turbulent journey no matter how they feel about me,what has this man who has nourished them and given them unconditional love ,what has he done? Never mind,it will soon be over and we will be on another journey together.An adventure of life beginning anew.

What I want to do tonight is thank the many friends who for whatever reason I may never get to meet but are closer in some ways(hell,in many) more than my own childen biological or child not of my body of of my heart.Yes,that one hurts.

These are the friends who I have come to know whatever the real me is,who are from all over the world in the APSFA support group,men,women,young people from all nations some suffering from things I cannot even begin to fathom,pain that while it is with me constantly I know they suffer more.For the most part they have not lived their full lives yet,some have yet to even begin the journey this,I openly say,”I love you”.You have yet to taste or to savor the many varied aspects of life,try not to let this disease become who you are or to define you.You be the ones to define it and spread the word of what we go through..To Richard and Heather for caring enough to call on a regular basis when I was at a place I doubted I would be able to climb out of.To Tina,who for whatever I liken to a Pit Bull who will stop at nothing to bring APS to the forefront and without the information she and others have gathered I would even though diagnosed,let others around me,albeit medical personal or just “so-called ” friends belittle me to make me feel as though I was worth nothing.She is in so many many ways not just a natural leader but someone who should be in public health in a professional way,or in public office.Nothing deters her,nothing gets in her way,and no matter how she may feel she is there to reach out with information or while never out and out sympathy,she because she is we and we are her, with empathy.

To so many who I cannot name,because of endangering them know that I love and care about every one of you who have come into my world and enriched it and kept me here.I must be still here for a reason,I will make sure Dr Besser never lets a day go by without hearing from me.His shoes must be getting uncomfortable by now,because I told him months ago I would not back off.We deserve to be heard,to have someone be our public voice or face.Not just a distorted plot that the TV show House can garner viewers from.Although we take whatever we can get.

From what I have gotten through each and every one of you is not just your own story and some of the horrors that go with this damn disease,but the quiet strength of  someone like one of us who has gone through nine surgeries in nine weeks,yet clings to that hope of life.When you still have a reason to fight,whether it is children,a sick husband,or a cause that draws you together for the strength you need to get up in the morning a face the day no matter if you wish to or not.The depression along with the varied ailments APS causes are many but together we will garner the strength from our “FRIENDS” in our group and find a way to go around the edges of FB,and still manage to get the word out and give one another the that little granule of hope and light we all need no matter if we find friends in what some would call “Strange Places” I have a friend of many years that I found in a decorating forum and imagine my surprise as he is still as close to me as ever and though he too has gone through much and we have evolved,you never know when that person will give you what you need or what you want,be it knowledge,empathy or just a respite from your day to day pain of being not a victim but rather an unwanted spokesperson of a disease you never wanted or asked for no matter you sex,your age or loacation.

To all of you around the globe I have come to know and love,I thank you for being who you are and what you are to me and to everyone you may come into contact with,You,while sick are a friend and fellow spokesperson for what we fight on a daily basis.

Matheson Hammock Park

 

FLORIDA-NEAR MATHESON HAMMOCK, SOUTH OF MIAMI ...

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Matheson Hammock Park.

    How many of us growing up in the Miami,South Miami,or even the Gables of the 50`s or 60`s before we drove remember  biking to Matheson Hammock Park because that and Tahiti were within biking range of where we lived and we knew we were  free to be who we were.Kids being kids,or for the slightly older a place to be with that special someone,and listen to our portable radios or perhaps someone had driven there and there radio was playing that special song for you and the person you thought you would be with for life and now have trouble remembering their name.Maybe the name is hazy but Matheson Hammock is still the pristine oasis that it was then,the place of our young and teenaged years that we still cling to with the tenacity of hope we refuse to let go of like we do our friends on Facebook who bear little  to the photos in our minds of that special someone.It is the smell ,that briny smell of the water,and seeing the crabs scurrying away,If you were fortunate enough to have a canoe,(before kayaks) you could get close to the mangroves and see a little bit of everything.Every kind of waterfowl, sea life, and if you were really lucky maybe a porpoise. As an  adult I went back and was amazed at how much smaller it was and how changed,yet something still pulled me to a certain tree,how I found it I will never know and there albeit faintly their it was a faint intertwined heart with two sets of forever loves.One is now long gone,the other girl no one knows where and her “forever” love I am still friends with today on Facebook.He is still the same,staunch friend,guard of whomever might try to hurt me and even though he lives across the country I could call him and still be able to cry on his wide shoulders even if it was a problem I still may angst over 50 some odd years later or the rather difficult time I am having now at the end of my journey. All because of a video that was sent to me via another old classmate that realizes that with the destruction of Matheson Hmmock Park is would be not just formalizing the power of the 1% and their being able to do with their money what we can do with but words.No matter! We will always have those memories of summers and of freedom,and of first or young love,or just friendships forever being bound by a gentle lap of waves on a lazy lagoon,the smell of smells that always takes us back to another time,another place,and the songs that we continue to play to take us back to those lazy,hazy,crazy,days of summer,and memories that no matter what happens cannot be erased.

However,for the sake of those who come after us and while those days may never come again let this place be a safe haven for grandparents to show that they too had a youth,they too had dreams,and they too indeed care to see not a memory saved but a small part of the ecosystem of Florida that is quickly disappearing. Why is progress assumed when something valuable is destroyed? Memories last forever in our minds,places do not.

When You Don`t Look Sick,Becomes Your Worst Enemy

Other than my hunched back, for the most part I really do not look as sick as I am.When you spend Christmas away from all you have brought into the world and those whom you love because of a disease they choose not to believe you have because to the naked eye you look better than someone whose organs are failing.Does that excuse their total disregard of a father who has Parkinson Disease too.

Or perhaps it is because the very foundati0n on which this family was built is on shifting sands and I am being polite when I say that.

Our is a blended family,yet today probably not that different from so many others today. I was married before and had two children,and shame on me had been an unwed  mother of a son who only lived a few days. I probably married my first husband to get back at my father and the tragedy and turmoil he had created in all that were around him.The thing was I knew I was marrying the wrong man and did it anyway.

I also had been aware of probably since puberty that things were not quite normal in my physical self as well as my mental self,which was a polite way of saying I needed help but there was no help  except to take that long walk down the aisle with the help of a couple of little blue helpers. Valium,as they were in those days,today too many to even contemplate.A swift shot of Windsors did not hurt either,I walked  down the aisle to something I know not what,listened to the priest do what he was supposed to do and walked back down that same aisle a married woman.The mass being in Latin I had not a clue as to what I had agreed to.After all,if it did not work out divorce was always an option,or death,by that time my father had just dispensed with  number 5. How bad could it get?

After a sumptious reception at the Boca Raton Beach Club,of which I have very little memory,other than a waiter coming in the private dining Room and calling for Mrs Moritz,too which meant nothing to me,my then mother in law went to answer the telephone,only to return to the room to say it was for me,but to remember she was the First Mrs Moritz,(she was not,but that in itself) is a story.I anwered the phone as the most recent Mrs Moritz,and it was my half brother Jerry Wise son of the famous Brownie Wise of Tupperware fame.Who has not had some Tupperware in their life?Wife Number 2! She had helped me with some details of the wedding as she and my father were seeing each other again. That lasted long enough for her to get a new supply of whatever pain meds held my brother to her side with some manufactured illness at this and varied times through their own twisted version of family drama.

Back to the bride for a moment,I had packed for a week in Ocho Rios Jamaica and John I think had packed for Philly where we were at some point to reside.His sister and a friend drove us to Miami International Airport,and we were in the lounge drinking and they called our plane and away we went.A week of sun,getting to really know one another in every sense of the way and romance of course,Problem was I did not love him,he married me to get away from a mother fetish,and some  other isues.We landed in Montego Bay and made our way to the Royal Plantation Inn in Ocho Rios.We made our way to out honeymoon suite,where we found the phone was ringing,John answered it and to my dismay it was my father drunk as a skunk to begin a practice he would continue for years until his death,askng Johnwhat he was doing to “His little girl” To which was replied”,I would be Fucking her if you would get off the damn phone!” Now that is not what took place,he couldn`t,I wouldn`t,and the couple next door from Hoboken NJ were having an extremely traumatic evening.So to compensate for his lack of masculinity he proved he was a MAN by beating the crap out of me where it would not show.

Remember folks,the sexual revolution was just a light in some laboratory.. and woman were  still a commodity,when you get right down to it has much changed? For the rest of the week I had a great time,enjoyed myself saw beautiful people,John had a marvelous relationship with the bartenders and I think the maid,and I made the decision to go off the pill as I was having horrible headaches,and pain. Beginning of a journey I am hoping to end fifty some odd years later.Of course I did not know then this all did not happen I was never married before,I did have a child but not two by this man who left during the  pregnancy and for forty some odd years my so called life has been a prevarication to suit someone else.

Am I angry? God,you have no idea,bad enough to know you have a disease that I inherited from my mother  more than likely gave to my daughter(not that she did not have other issues) but have very likely passed it down to grandchildren of child who was not born of that union but of present one.NOT!

Shucks folks,I told that granddaughter I would never lie to her when she asked me a question just as I said to granddaughter I raised from  mother of first union.If nothing had been learned through years of abuse and suffering lies were wrong and truth would be my new venue.Well for the most part.I can say however I have never lied when asked a direct question by either of them especially granddaughter who at this moment is in skies over the Atlantic on her way to Spain.

HUGE MISTAKE!!!! Because of my illness,and the connection to half-whole or whatever b

rother he has I was supposed to ignore the first marriage,his sister was supposedly his half sister,how convenient that she died 11 years ago. My wonderful husband was to be his father and he has been for all things and son from assumed first union took last name of his stepfather while her mother was pregnant with granddaughter. I sure hope you can follow this because with APS you tend to forget and lose time and moments.
I was in doghouse because after being diagnosed with antiphospholipid syndrome or APSFA.org more than eight years ago and then epilepsy and SLE Lupus and Snoddens syndrome amongst others I had the temerity to suggest testing for said grandchild that was having seizures and his newborn son also had been born with a seizure disorder.  Note to self…..NEVER tell the truth and if you are sick with a serious disease LOOK IT<even breast cancer does not show.

Answer to SELF>>> LIE!LIE! LIE! My whole family is built on a stack of lies and I am blamed for the stack collapsing even when I knew nothing of the story in which I had a starring role,and in which there once was a family there is nothing but scattered cards and guess what? I AM SICK! HOWEVER I DO NOT LOOK SICK! So if I do not look sick everything nust be fine in my now house of lies that are nothing more than  stories made up by a writer who has changed not just his life story but in doing so turned everything upside down and destroyed so many lives with not just lies but a fairy tale life that discounts everything a family stood for whether is was good bad or indifferent! Once again I play the heavy in a story in which my sickness does not exist but I am but a bit player.

I have always wanted to be the star at least in my own drama,if not that why be anything at all.Let those who speak with their warped versions of their make believe veracity fall on their own swords.

I am fine,remember,I Don`t Look Sick,Therefore All Is Right in My World!