This will be one of the last post I write, of my story and journey. I have not written in months, as the words and thoughts are lost and my last string of hope I was holding onto was taken away yesterday. I have to accept the fact that all my problems stem from being overweight and not exercising enough. My final kick at the can so to speak ended with that statement, according to the sixth and final neurologist I will be sent to. They have spent enough money and done more then enough tests on me according to the reports and MB Health. It's a full circle from when I started to write to where I am now ending my story.
I will keep this as short and sweet as possible. People except those that live in this hell of being left untreated and not enough knowledge about this rare but not so rare condition known as Stiff Person Syndrome, through the different support groups I belonged and still will be for others. For each and every one of you, I wish you all peace, love and hope you hit upon doctors who know and care about helping people. For my journey came to a crashing halt yesterday... we are not made of money so going or moving to another place that knows and understand this condition and who could help me are too far from my grasp. And my pleading and begging to be heard or sent to doctors who know this condition with each neurologist I have visited has come to pass in this city, but I am dreaming if I think they will cover the cost for me to be sent elsewhere.
I have one month left of my medication which helped me somewhat but has not cured nor allowed me the ability to lead a semi-normal life is left and after that I am on my own again. I am just seeking medications to feed an addiction I did not know I even had until they put me on it. But he did say if I find it too hard he will prescribe me one more month to get through the withdrawal but that will be enough.
Step one in my latest chapter of this life will be getting the last of my affairs in order that is my main priority which sounds melodramatic even as I write these words but the last time they took me off my medication (which was a much lower dose then I am currently on) I almost died so I am not taking any chances and want to be sure my husband does not have that burden on top of all he has going on.
Step two (if I make it this far) will be to find a job (somehow) which in my case will require me to work full time or because of our economy and the mounting debt we have required due to my not working and the cost you don't realize involved when one becomes too sick to work, maybe even two or three part time jobs before my insurance runs out, to help pay the bills. I too am unsure how I am going to do this as I can't see anyone wanting to hire a liability such as I am now little lone once I am off my medication. Most days I can't get out of bed and dress myself without my husband's help, but that's okay as the doctor says if I change my diet and exercise more that problem will fix its self, I have to start by believing in my mind that it will happen it's all within my power to change the way I am I was told. I did feel like Dorothy from the Wizard of Oz when that statement was made. Only that was a make believe story and this is my life we were talking about. If fairy godmothers do exist please come find me and fast as time is of the essence.
Through will power, and exercise I was told yesterday is how I will be cured. And if I could please have my physiotherapist call him so he can tell him to push me harder than he is. Even with having 4 spasms/seizures in his office and falling as I showed him how I walked without my walker. Ignorance truly is bliss I guess. But he can't wait to see me again in 4 months time once I am off my medication, have lost weight and begin a workout program. My life will be normal again through my own power of belief. He and I will see what a difference my life will have become in that time. I too will be able to do normal chores like housework, dress myself. cook and even work again but I have to visualize it and see that I can, I can't be as bad as I think I am I drove myself to his office and walked in there even with a walker which proves it's all in my mind and I have made the decision to make myself believe I have a rare medical condition, one I might mention I had never heard of until my initial neurologist thought I may have, although he passed me on as rare conditions where not his specialty. Looking back and with what I have bared witness to none of the neurologist I have been sent to are equipped in this city to deal with rare conditions. But I guess again that is my problem not theirs.
Driving home if I did not have the support of a small but few loved ones in my family, friends and strangers who have now become my friends or more like my family then my real family the thought came to mind for a fleeting moment to end it all. I can fully understand those that do end their lives especially those that don't have any support system at home. I remember a year ago talking to a lady online who had reached that point as she too was told it was all in her head yet again. I think that was her fourth or fifth neurologist too at that time, and the helplessness I felt as she lived on the other side of the world and I tried and so did a few others to make her believe that it was not her, only to find out she did take her life that weekend; which still saddens me to this day. That is the ugly and painful side of having Stiff Person Syndrome...too many doctors are uninformed and don't know what to do. But rather than admit they don't know what they are doing make the patients believe it's all in their head and only we the patient have the power to change what is happening to them.
No comments:
Post a Comment