Hello good morning good night, I apologize I’m a little late on this one because I got tired and honestly I let my worry really really take the best of me.
As I’ve stated in prior posts, MS is a tricky little mind f***. I’ve taken the Ocrevus and am finished with my first infusion and at first there were curious worries, then elation, with a coming regret and then a composing of bitter contentment.
At first I took to MSabove asked, around red people’s fears people’s horror stories and the likes, and then I let it really really fester and really really sink into being more than petrified. Mitigate the actual appropriate ways to find information. So I took to using my mind as scientifically as possible which is not like me but, I am proud of myself, however the news that I found was more than daunting, try absolutely terrifying. So spinal tap, news, and a matter of when this will really, really be a prospect. This is why, because if PML is what’s going on then I’ve got two years and that’s if it’s a possible good two years or my body will completely just shut down and throw me to the wolves.
So from talking to nurse doctor another nurse my family who’s also a married of nurses and my very good friend whose daughters are also nurses or doctors depending on which one we’re talking about I’m being told to be my own advocate not only be my own advocate but be aggressive let them know you don’t want to take care of me then I’m going to find out if the answer is the only way I can and if that’s the case then I’ll have the right to kind of push it in their face. Meaning if need, be file a lawsuit but that’s another thing, doctors don’t aim for that s***, they’re not trying to be an adverse reaction for answers and finding answers. They have a bunch of red tape they themselves have to follow through and with my job I’m beginning to understand that more and more. It is just a business nowadays, the U.S. health system l,b that is, doesn’t care about the patient, at least I know as a receptionist for the company I work for having to do with health issues I get to care about the patient. However being the shoulder and sometimes, coming off as the guy who makes it come off like I’m cutting tape when I’m not, because I’m not licensed. But I’ve noticed the more candor and honesty you bring to every patient as long as you make sure to listen to them, they’re more than happy for anything that can be done because until that moment they didn’t feel like they were being heard. Anyhow I’m realizing being the patient dealing with circumstances that are somewhat parallel to issues I’ve been dealing with as the agent and not the patient it’s sad to know that I’ve genuinely have to be my own advocate and aggressively so.
Also to those who do read and keep up with my daily drops or really anything that I post I do apologize for a late one today I’ve been somewhat in my own head a bit worried and trying hard not Spanish but at the same time trying to, I guess we saw myself to a point where I can think logically, and acts appropriately to make sure I can get things done I’d rather know that I have two years left then find out a year and a half that I’ve got months if that’s the case then we’re going to make this the best damn blog no one to freaking anybody that we meet and I will do everything I can to pour my heart out and be as real and raw as I can so everybody else can get in front of it for themselves and for the future so that is what it is right like that’s why we do what we do that’s why we write we want to communicate and personally yeah I would like to feel that I’m seeing your likes and your follows definitely help and I feel the support and I apologize if I’m not going and liking your pages more often I will definitely make an effort to do so and I apologize that there is very little punctuation, sometimes when you do the voice to text you got to make sure you do that and today I’m not going to cuz I want to make sure I drop this so I can make sure the day 28th drop is hopefully going to be seen by midnight if not 1:00 in the morning mountain time that is.
Also the Latin phrase that I close with everyday is in layman’s terms “know thyself“.
So every time I close out I am definitely reaching out to anybody and anyone to remember that it is on us to know who we are to know what we are and to know how we react with anything that we are facing let’s shine some light on the world let’s shine some light on one another and let’s shine some light for one another.
Good night and good morning, good morning and good night. May you all have a beautiful night a beautiful day and I will see you all soon hopefully I will have an update on the spinal tap blood work and regardless of HIPAA I’m going to be as honest and forthcoming as I can be I hope it’s not too much I am what I am and I’m realizing more and more specially with what I’m finding more data proven details, his may be all I’ve got.
Nosce Te Ipsum
Dream Dark Stories 