Hey Everyone...I have decided to create this blog so I will have some memory of this horrible disease. My cognitive issues are or seem so bad to me. I failed the cognitive testing for Disability REALLY BAD!! And I also hope something in my Blog will help others or at least encourage others. I will try to be upbeat most of the time but dang it...sometimes it just SUCKS!!
My name is Cindi...I am known as a FIGHTER for everything GOOD...but this crap has bitten my ASS! I get the usual comments..."BUT YOU LOOK GREAT" I just smile and say thank you and walk as straight as I can over to where I am going. I really appreciate when people say these things so I know I am doing a great job in covering up all the pain and anguish!
I have had such a blessed life and such good friends. I have done more things in my life then some ten people all together. I do push!! And I am PUSHY!! Too Bad dang it!!!
Back to my medical crap....let's see...I knew something was wrong for about 20 some years but the doctors said it was all in my head so I would drop the doctor thing except for about once a year when I couldn't take the pain anymore and then they'd say...IT MUST BE DEPRESSION! Well let's take a pill for that then...then it was ADD...let's take a pill for that one...I do say, I thank goodness I took the ADD pills(SPEED) or I would have never been able to raise my beautiful SONS! They are the love of my life! They gave me the DRIVE TO KEEP GOING! Thank Goodness! I was a Supermom...I kept going and going..I did fall a bunch. But I just figured it was JUST ME! Then 10 years ago, a friend of mine a P.A. said I think you have MS and I said...I think I do too! But at that time there were no tests(still none by the way)so we decided I did not have it...I guess we were wrong!!! lol That is one thing I want to be an activist for is having seminars for the Doctors and showing them the DIFFERENT symptoms we have. I would like at least 5 of us standing up there telling these doctors what we went through to get a Diagnosis. Not just brush us off. The thing that pisses me off the most is that I could have been on these injections for 10 years and maybe I would not have such BRAIN DAMAGE!!! But we really never know with the stupid disease! That's the problem...we don't and will not know from DAY TO DAY!!!
This whole thing pisses me off...I have Big Plans for my future...when my boys get into college I had planned to start a couple businesses but I don't think my brain will hold out. I can't stay on task. I say I will do something and it all falls apart. that really hurts my feelings that I could let someone down. I seem to never give myself a break. I was always the one to do everything for everyone and it really bothers me not being able to do that anymore...
I am suppose to be going to a WAMS(Women against MS) meeting at noon and it will take everything I have just to go shower and drive over to the beach to the meeting! My back is killing me...yesterday my legs hurt so bad I could have cried but I tried not to cause I was afraid I wouldn't stop!!! They gave me a neuralgic pain drug but all it did was make me more depressed. And on the bottle it says..POSSIBLE SUICIDAL THOUGHTS!!!??? WHOAAAA...but the Pharmasist said just try it...well I did and the full bottle is still there! No thanks...I'll just take the pain. I just wish the regular stuff like Tylenol worked...Please...it doesn't dent it!!
I will say on a positive note...I have been on Copaxone for about 8 months and it is working!! yeahhhhhhhhhhhhhhhhhhhhh....no new lesions and no active old lesions!! I only have lesions on my brain...none on the spine...my spinal tap is still clean...so I guess all that is good news!! As a Newbie to this MONSTER I really don't understand a lot of it...I study and research all the time though.
Oh by the way...did I mention I was 51...yep and it took 20-30 years for these doctors to diagnose me. I stayed in denial for about 6 months!
Well I better go, it's 9 am and I need to be at that meeting by noon so I better get going!!
I have a Walk MS Team named Multiple Scuses in Wilmington NC...please come join us in the Fight Against MS!
