A Pebble Hurts,But When It Is Moved For The Purpose Of Helping Those With Rare Diseases,It

http://Rare Disease Day US

When I first contacted Dr Besser it was after the appearance of country singer Joe Nichols and his wife on “The View” and I was just getting out of the hospital with yet another flare of my APS. I was overjoyed as I felt that finally we who suffer from APS(Antiphospholipid Antibody Syndrome) were to finally have someone who could be the spokesperson for all of us who suffer from this scourge.I was diagnosed with APS/Polymyalgia Rheumatica Giant C Cell Arteritis in 2003 after having suffered from five pulmonary embolisms and gradually finding myself where most days I could barely make it out of bed.I was rapidly losing me,and when I heard the announcement they were to be on….Words cannot begin…..

Yup! Words cannot begin  alright.Yes, APS can cause miscarriages and can cause still births but it is NOT just a disease for pregnant women.Nichols and his wife made it sound like that was the sum total of the entire thing.NOT! It also happens to affect men too.It can cause anything from symtoms such as migraines,constant fatigue,horrible pain everywhere,to the ones that can kill you.Pulmonary Embolisms,Seizure Disorders,Strokes,in my case impending and rapidly descending blindness.It has now known that APS has genetic components that show while twins may both carry the gene only one may have the disease and be in a wheelchair.It is also now being said that there is a direct link to MS.I do not think any of us who have it are surprised by that at all.

Back to my tale of woe,fury,and the ultimate gaining the trust of Dr Richard Besser,Chief Medical Correspondent for ABC and GMA. I had contacted him after their lying,no good appearance and I went to their page and explained what else APS can do and that men are also affected and how thrilled I was for the birth of their daughter.Great,Right? NOT! My story,the story of so many who also suffered from miscarriages,but the stories from so many who were literally dying from this disease,and what did I get? All of my comments deleted and a message to leave them alone.

It was NEVER my intent to anger them. Why would I when I was so thrilled they may be answer to the prayers of hundreds of thousands who suffer from this?

I will finish my story within a story,but right now I just hurt too damn bad,and have to shut down.

Dr Besser,You know how I feel about you,and how I think you are truely one of the good guys . Your parents must be so very proud of both you and your brother…I can butter up with the best of them,but he knows I am speaking the truth.He was willing to admit he did not know much about APS….He does now! The pebble I placed in his shoe may have moved slightly,but still has a ways to go. I do thank you from the bottom of my heart as well as the thousands who suffer in this country from this and around the world.

My hands will not longer work,and trying to figure out how to get out of bed and into the damnable chair.

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How To Gain Recognition For Antiphospholipid Antibody Syndrome,(and other orphan diesease)?TI

I realize that diseases like cancer,heart disease,ALS,Parkinsons,and others garner much more attention than any of the orphan diseases like APS,EDS,POTS,and so many others.However,I am suffering from APS,and it has caused me heart problems,lung problems,it has affected my brain due to the fact I have seizures,plus so many more.Yet,so many health professionals haven’t a clue as to what it does to a human body let alone know what it is.

Why is this?If so many other diseases can garner so much research money then why not study these orphan diseases that may contribute to the more well known diseases.I do not understand the thinking behind this,nor do I understand why not just the misconceptions but the out and out distortions that have been put out there to some of these diseases.

I was not diagnosed until 2003,but had been sick most of my adult life.I suffered migraines that would keep me in bed for days,pain that was constant,trouble with speech,small backouts,and then full seizures,rashes that would not go away yet no one seemed to know what they were.

Instead I was told I may have Mad Cow Disease,one Neurologist actually had the termerity to suggest that I needed more sex.Now these were given without any testing, nothing more than things coming off the tops of their supposedly well educated heads.Give me a BREAK!

How can any Orphan Disease ever hope to gain recognition if medical experts either are not aware of a lot of these diseases or they are looked at with such scorn and dismissal?

If medical experts are not willing to even look at what the consequences or correlations could possibly be between orphan diseases and diseases such as cancer,heart disease,strokes,brain dysfunction etc then what future really does medical research hope to gain?I know APS causes strokes,heart problems,brain dysfunction due to seizures,pulmonary embolisms and so many others because I have all of them.So where are the experts now?

If we are to further the treatment of any disease wouldn’t it be smart to see what the connection may be?We already know that genetics play a big role in a lot of them,so why not study what makes it so or try to futher the research for gene therapy?

I guess the bottom line of this,is that there are far too many questions and it is sadly apparent that anyone who may have helped to garner support for any of these orphan diseases either has no desire to do so and to the millions of sufferers of these orphan diseases that we will just have to keep knocking the walls down of apathy and the status  quo of doing nothing.

The Fear That Comes With Nightfall Intensify The Growing Feelings Of My NightTime Enemy..Pain

390910_2565854796958_1571794106_32462676_635753712_nIt is now around nine thirty and I am beginning even with all of my valiant efforts to feel that insidious feeling that my old enemy is upon me once again.I am so tired of hating the night,the days,the life that I no longer recognize as mine.I feel that feeling in my legs that I know with the hot feelings of flickering deepening pain with turn into a full blown thrashing of my legs everywhere,my skin is already on fire,not just my skin but everywhere from the inside of my ears to between my toes to parts I will not mention..

I have limited my fluid intake so that I will not have to get up every hour the way it has been,I take forever to get off the couch and agonize while I curse all that are not in my mind at that moment.The weakness and pain are insurmountable and claw at my body as a gone crazy kudzu vine that is threatening to take me away and end my problems once and for all..I can feel it in every fiber of my being the never ending pattern of the march of my nighttime misery and I really want to cry but to what avail?

There is no one to hear me,nor wishes too,my poor husband needs his rest and I resent him for the ability to fall asleep at will while I cannot even get to the kitchen to get a snack.I listen to the sounds of the building and to others who may be outside on the patio downstairs fighting their own occasional insomnia.Not me,this has been with me now for over eight weeks and now I can not even get the catch up time during the day.Why?,what is new that is fighting in my body,is it just the APS,or is something else going on that I will have to deal with?

I am too tired to have to deal with the emotional as well as physical form of my own personal water boarding,that no matter who I call on in the great,vast unknown of the hereafter,no one will hear me.I, when things are really god-awful see Regina,but she puts her finger on her lips and shakes her head that it is not time. She knew pain,esp after her accident where she went under a 28 wheeler.Months of pain and the rebuilding of her body. I need you to take me now Gina there is nothing left for me to do.Daddy  will be fine as soon as we make one more move,down to Md to be near to John and his family..Having seen Sara graduate, and do so with so many honors and to know she only has three years of college,makes me so proud of the fact I had a hand in  seeing the lovely young woman she is.However I digress and sleep will yet elude me.

Having a mother who killed herself I always swore I would not take that way out,but between the pain and no sleep  in order to regroup[ I would do whatever it takes.You tend to go a little mad,pain can wash all of your good intentions,and rational thoughts aside for that glimmering and shiny gold ring of painless,restorative sleep. Do I have anything worth while to trade? No,,nothing at this point of life.Just the knowledge that it is getting darker and later and hell while I have intense pain now is awaiting me with the never ending tendrils of flames coming closer to wrap around the person that once was me.How much longer will I be me?Shall  we start a pool?

If this is part of APS or something else I do not have the will or strength to fight it anymore.I see the flames and a part of me is drawn to them,like a moth to a flame.We know what happens to the moth…..

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!