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…..