APS is a strange disease.While I am indeed sick as I have said for the most part other than the stoop of my back I don`t look especially ill unless I am in the middle of a flare which can mean different things to different people with APS.
Today,I did not have a particularly good day.I woke up at around 3:00am and knew by the shaky,sweating and tremors It was not going to be a particular good day.
Have I mentioned that while I have complete shits for kids I do have a saint for a husband.He has PD,and has his own issues but it takes me longer to get going in the morning so bless his heart he has taken over the making of breakfast and brings it to me in bed.He also happens to know he will be rewarded.As I have said,a man never seems to lose their sex drive. He does make a mean french toast with sausage or bacon though. During breakfast I started having trouble with my speech but as he was looking forward to desert it did not seem to faze him.
I knew it was going to happen,I just did not know when and lucky for him it did NOT happen during desert or what he considers to be such,and I consider it payment for him being a good guy. Call it our way of the barter system.
He managed to get everything in the kitchen and I went into the bathroom to clean up and get ready for the day,not there was much to get ready for but these days any outing is of some importance and I wanted to get sand and coral and maybe some extra seashells for the air plants I had ordered and had gotten in the mail the day before.For some women,it may be a Coach handbag,or shoes or a after Chrismas 70% off sale,not me.Give me a conch shell,some sand and something to remind me of the countdowns until my self imposed hell is over and I can escape from the ropes that have tied me to family that did not want me except as a shill for whatever use I was being used for at the moment,or wife and better yet housekeeper. Ahhhh,however I fooled them !I was sick the whole time and since I didn`t look it,therefore it was not so.Even when confronted with the official diagnosis of APS,they either did not understand,not unusual as most doctors do not either,but even with breast cancer that was not going to stop the house of cards that had been built around the lies that for once I had nothing to do with.
Cleaned up and dressed and albeit shaky I managed to get into the living room before collapsing onto the floor convulsing feeling the one eye roll back in my head as saliva dripped down and my head hit the floor repeatedly and Tom kept trying to get me up while I had no control over what my body was doing or what bodily function I would lose next. This for sure was one of the times I indeed looked SICK!
Never one to let a mere seizure get the best of him or god forbid call a doctor,somehow he managed to push,me crawl while still convulsing into the bedroom and he managed to get me onto the bed.He for some reason thought that perhaps I had not taken my meds which I had at 3:00am when I had begun this rather shaky journey to it`s inevitable end.He fussed over me a few minutes and I fell asleep all the while thinking, how had it all managed to get to this. A family that for all practical purposes was no more.My growing hatred of my youngest son who had betrayed not only the both of us,but the grand daughter I had raised as my daughter and had thought I had corrected all the mistakes I had made with her mother who I had lost eleven years ago and comes to me now on a nightly basis to look at me with pity and a certain longing to be able to help. How I wish I could talk to her ,I do on a more than I should basis especially now when I have recently found out that I should have denied her at least for the last nine years to make her whole brother version of whatever story he has conjured up in his mind a fact to portray to his family.His ex wife,his daughter,and for all I know at this point to his now wife,stepdaughter,and two year old son.You are confused,HA! I am not only confused but feel mad as hell,betrayed,by the one shining star I had always held dear. Not this son,not this child who had been my salvation in so many ways,was denying his very existence of his full sister,was denying that I had been married before and since he had taken my husband`s name in order for his daughter by his first marriage to carry the name of the only father he had ever known. Respect,maybe,but someone should have told us.No one had bothered to tell us that we were supposed to perpetuate this lie,that I was not sick with a genetic,hereditary disease that his daughter having suffered seizures too for the last couple of years was not to be tested for APS since I didn`t look sick so therefore I was not,and everything I had told her was a lie because it threatened the lie he had manufactured for his life.
Do I know what story he has told? Nope! All I know for now is this father who he revered so much that he took his name,and the mother that gave him life are no longer a part of his manufactured life.I am still sick and getting sicker with each passing day,everyone has chosen to put their heads in the sand,about APS and the fact I have it,the fact it was passed down to me,my sister has it,my grand daughter and possibly grandson may have it. So be it in their soap opera world.
I may not look sick,but for sure I know this mental anguish is not helping me.My INR is more out of control than it has been for years and seizures are more prevalent and pain and despair has taken over my so called fabrication of a life I thought I had,despite the problems.While we may leave the ropes that bound us to our pretend family in the spring,we both take our diseases with us and the memories of what we once thought was a family.
The family that never was real,and I am indeed Looking Sicker If Nothing More Than For Today! I am the face OF APS,and I will not deny it,but will pray that someone with a public voice that is far more than mine will come forward and put the spotlight if only for a moment on a disease that ravages the body,can be passed on and in my case destroyed the house of cards that was once The Average American Family,at least while I Did Not Look Sick.
Maybe when I am gone,they will look through all the medical records and documentation and wonder why I could not be the person they wished me to be.Maybe It was because I WAS SICK! Better to look good though! What total Bullshit!
