When you get diagnosed with an life-altering disease,get misinformed or let me rephrase that so late messages will end.I was let me say not informed and that is my fault,no one else`s.It is no one fault but mine that I was not more informed ,I may have been lying in a hospital bed unable to move,but upon realease it was no one else`s fault but mine that I did not do intensive research on Antiphospholipid Antibody Syndrome with Polymylagia/Giant Cell Arteristis with Opthamologic Manifestations especially when you have one eye. I should have run to a teaching hospital but felt and still am of the feeling my primary was aware of APS just not the track it would take and even as recently as last June when taken to a local hospital with a severe concussion was told there never was nor is such a disease. I am going to mail them the reams of reseach I have.
When you are diagnosed with any autoimmune disease,you do not need one doctor it has to be a team effort and on my current team I have my primary,a Rheumatologist,Hematologist,Neurologist,Dematologist,and now a Neuro Opthamologist who I am afraid by the time I get to see him all vision will be lost.
The difference between me and so many other APS patients is that I have had a life. At times like all lives there were tragedies maybe more than most,but I have had one. Recently we lost a young thirty nine year old woman who had had eleven brain surgeries as in many weeks and had lost her five month old daughter a few months before her untimely demise. That is why I implore you to take charge of your own health.Learn from my mistakes of which I hold myself for possibly keeping the wrong type of people who maybe did not know as much as I hoped they knew.If the doctors still can be at odds who else can be as wise or wiser? Take time to keep a journal,or a blog of you and those you love.You will be amazed at how when you see something it print even if know one else ever sees it how much clarity it can give you. I started a blog after my children refused to get testes even though some show signs of the disease. THey are grown and though my heart breaks for them they are as I said adults and parents and can make their own decisions. Had I upon after having my pulmonary embolisms and other things,such as seizures and dvts and phlebitis they had come up or defined the diagnosis I could as their mother had them tested.It was not discovered untiil the 1980`s by Dr Hughes in England and what was once called sticky blood became Hughes Syndrome and still is although is changing over to APS even there and I think in part to the work the APSFA.org does and to Dr Donato Alcaron Segovia of Mexico who was famous for his work on the disease and wrote the "The Antiphopholipid Antibody Syndrome and passed away from complications of it.This disease for so many years was called the pregnant woman`s disease and yet Dr Segovia was not a pregnant woman as are many of the men in the group. This is a fallacy like so many other other deivations of the disease.
I decided New Years Day I would dedicate this year to either finding someone who has a public (famous) name with the disease and there are plenty,or finding someone who would come forward and be a spokesperson for APS.
When you have an orphan disease it is not like Cancer,or Diabetes or PD,that have drug money from varied companies helping with the research or making money from the drugs they have discovered as a result.How anyone ever pays and raises a family is beyond me if you do not have insurance.I was put on one injectable that the generic form was over $2,000 a month.Who can afford that,and unless you have a child who you would do anything for the average family has to make a choice if you have no insurance. Fortunately when I was in the hospital with vasculitis I was bridged to another drug in conjection with another. Yeah,I get confused too, especially now that I have trouble seeing them.
All the more reason to be as vigilant as you can with the keeping of a journal and bless the English teacher who teach our children to write.I can think of two,and one writes for this publication and never fails to make me smile.Whether or not you are sick now or ever is not the question,it is the taking charge of who you are and keeping track of who that person is and if there is a change you will be able to go back and document it,your records are yours as are your tests aand anything can be scanned and copied.
I as I have said am detirmined to bring awareness to this,and have been fortunate enough through tweeting and my blog to attract the attention of Good Morning America`s Dr Richard Besser who is their chief medical correspondent. He has been kind and supportive and we are fortunate to have him on our side. He is doing a web chat or Rare Diseases sometime in the future and others have been in contact with me also.
I want to STRESS,nothing can be done about the course the disease has taken in me and I have lived my life.This pales in comparison with the loss of our eldest daughter and unless you have taken a walk in those shoes you have no idea of the neverending pain or loss. This is a continuing of a story of one woman who has a disease,her journey,and for you not to make the same mistakes I did.It is also important that you take the time to be good to yourself. If you don`t,who will?