Thursday, February 7, 2013

Today is the day Life as I have known it ends

The tests are back.  The results are in.  It is no longer just a scary proposition, but a reality.  I can't tell you what this diagnosis is like.  It's almost surreal, by the time you get the diagnosis you feel fine.  There is nothing wrong with me today, but you are telling me I have a disease that at any time could make me paralyzed, incontinent, stuttering, incognizant, almost a wheel chairing vegetable.  I am overwhelmed, I want to hide and look at how this feels from all sides before I have to face the world with it.  What is it?  It is Multiple Sclerosis.
There is no reality that I can see me in with this and still being able to be me.  I see alcoholism as a possibility, maybe death by car accident.  Not yet, but it is a possibility in the future as disease progression occurs.  I was just given an extended death sentence...but I am not sure I will make it to the execution date, I may check out before then.  The medicines they have to "try" and control this diesease will kill you anyway, but just as slowly and more painfully.
I can't do this...They should provide you with a free grief counseling session with this diagnosis.  I can't afford this disease, and my student loans, and just everyday expenses.
God...can you hear me?  I don't see another door to knock on, please "Knock Knock"  open up, please.  You have tried to prepare me for this, I know it.  I am human though, I had hopes and dreams.  I never was anything special, I just wanted normal....that is all I have ever wanted was normal.  I know I am a evil sinner and don't deserve it, but I still dreamed it might come true.
I am now faced with a decision, stay and try and be a responsible adult or go and try to accomplish as many dreams as possible before its too late.  God I know your here but I feel so alone, and scared and worried.  I am sorry.  I am tired of this life, but I think perhaps I have been for awhile.  I am not ready for any of this, but there is nothing to be done about it tonight.  I will sleep on this decision and wake up with the right perspective I hope.  I can't do this....I think I am going to be sick.

Thursday, October 18, 2012

I am scared.

I am scared.  That is kind of a hard thing to admit.  I am supposed to be an adult, able to face my fears with relative calm and some semblance of rational thought.  The truth is I am scared to my core.  I was diagnosed with a CIS last year.  I woke up one Sunday morning and my legs were tingly.  That really didn't scare me, I had a hairline fracture of a vertebrae in my neck when I was a child and since then I have had things go numb.  Normally a quick trip to the chiropractor would rectify the situation, this time it did not.  Two weeks went by and I finally went to my General practitioner, he scheduled me for an MRI 12 hours later and 4 hours after that he called me and told me I had lesions on my spinal cord.  I needed to see a neurologist.  They got me in right before Christmas.  I had a brain MRI the next day and the Neuro said there were lesions on my brain.  I started Steroid infusions the next week and Copaxone injections since.  I spent New Years alone this year, alone and half numb.  I have recovered from the incident almost fully, still missing feelings of heat but not cold on the top of my left foot.  But its nothing I just have to remember to test the bath water with my right foot.  All of that didn't scare me as bad as not knowing if it will happen again.
I have another MRI scheduled in a couple weeks, the one year follow up.  If there are active lesions on this one the diagnosis will change to MS.  That is what scares me.  It scares me to the point of keeping me awake at night.  It scared me so bad I quit smoking.  I read a study this year which said CIS patients who smoke have a 50% chance of relapse in the first year.  I am analyzing everything all the time, am I stuttering, can I still sing, hows my balance, did I just set on that foot too long?  I am scared to see my family at Thanksgiving and Christmas this year.  My two aunts on my father's side have MS.  I want to blame one of them for what happened to me, she was having a relapse at Thanksgiving last year and I came down with mine not 2 weeks me that sounds like a virus incubation period.  I don't want to be around her she is doing so much worse this year.  I feel selfish, but in this I think I have a right.
I don't know how to tell everyone, "I am sorry but I feel like being alone this year."  I am kinda thinking I might ask one of the girls at work if she would like the day off and trade with her so I can work and avoid my family.  I don't think it would be so bad if researchers could say for 100% certainty this is not something you catch but something you are already born with.  Right now they think its a combo of genetic predisposition and viral agent.  So am I in the right avoiding certain people?
All I know is I am scared and I can't tell anyone who knows me, so world I am telling you anonymously.  Thanks for listening.

Sunday, January 9, 2011

A New Year...A New Blog

I can't believe it.  I subconsciously thought that maybe today was the day that the world's great civilizations had finally fallen.  The End was here!  No luck, everyone just left the house and me asleep.  I slept till 4pm.  The sleep of the dead, too.  No dreams, no barking dogs, no blaring TV, just complete and total unconsciousness.  Normally I would be completely OK with that, but I had stuff to do today...I had stuff to do.  Well, I got some of it done.  Who am I thing done.  I went to the book store and got the next book in the Sword of Truth series by Terry Goodkind, "Chainfire".  I came home and pigged out on some mmm,mmm,good homemade chili while watching what the Scyfy(whose kidding who) channel called good TV(on Hulu). 
I have come to the decision that American TV Sucks!  No one who writes this shit to make money for a living could ever be in touch with real entertainment.  They are all sell outs and sell shorts, too.  I hate reality TV.  I would really like to see a TV channel that isn't on TV at all.  All its shows are online.  The ratings for these shows would specifically come from how many people visited and watched each program.  Real entertainment truly tracked by the people making it.  I would think then you could get a real sense of what people want to watch.  I don't mind commercials.  I would prefer commercials and getting the entertainment for free.  I like what Hulu has tried to do with commercial tailoring, too.  I don't want to watch diaper ads I don't have kids or BMW ads, as if I could ever afford one .  Let me tailor ads for me. And get counted for shows I like to watch, just because I watch them online.