Right now I want to scream.
But I dont have the energy to scream. Maybe even to
I want to yell - okay, enough of this - joke's over - i get it - ha ha - funny - but time to move on.
Or this:
This is so unreal. It can't be real. It just can't be happening. I don't know what to do.
How can this be happenning?
I've only been in this for 5.5 weeks. Came from out of nowhere. no warning. didnt have a history of illness - wasnt waiting for a diagnosis. Wasnt sick. strange symptoms started Dec 22...diagnosed Jan 4. WHAT THE HECK IS THAT????
Does anyone else want to just scream? or cry? I dont want a pity party - that isnt me, never has been me. Ive always faced my crap head on. Dont need anyone to play their little violins for me. Just thought i was passed all of this and on my way in life. And now....? what, exactly, do i do now? Yeah, sure, you can tell me that "I have MS, but MS doesnt have me" - but you know what - when I wake up in the mornings and dont know if I will being double vision and if I will be able to drive or work or function for the day - the frickin MS does have me. I have to accept it - even if just for that day - in that moment - i'm not in control - im living under a big frickin question mark over my head - not knowing what my future holds. And i want to tell my doctor to take his grim prognosis and shove it!
I'm new to this - these forums - and this disease. I did an introduction in the newbies section - you can read it if you like - but to make it short - a few days before Xmas - right side of my face/head went numb. Thought it was because of my jaw - I have bad TMJ problems. Didn't see doc - as it was a holiday week - between Xmas and New Years. Jan 2, my dental specialist said to get to a neuro sooner rather than later. I thought I had a pinched nerve up there somewhere. My vision started going whacky. Next day I was in ER where they did a CT of my head - showed no tumors (yay). Next day - Neuro tells me that he thinks I had a stroke. STROKE?? What the....
I'm 31 years old - what's he talking about. He rushes me for MRI and MRA. Two hours later, he called me -on a Friday afternoon -he says, "Okay, it wasnt a stroke" - I take a breathe - he e says, "You have MS" - I say "WHAT?" He says "MS. Do you know what that is?" I answer that I do. He proceeds to talk for 12 minutes - I dunno all that he said - I was totally out of my body. I remember asking a few questions about prognosis, treatment, and to what was the most important question: can i still have children. Other than that - I can't tell you much more other than he told me it was aggressive and we needed to act fast.
Even though it's only been 5 weeks since Dx, I just finished my first 30 days on Copaxone. I hate them. Next box arriving tomorrow (Tuesday) morning. I can't take the interferons b/c I have a bad history of depression and my doc doesnt think it is smart for me to take it. He wants me on Tysabri - I want to take Tysabri - he wanted me to wait 3 months on Copaxone first - but I dont want to wait it out. I think he knows copaxone wont be strong enough for me. Interferon might be my 2nd best choice, but still not good enough. I need to see if the Tysabri will work for me. Tomorrow I call and tell him to start the call rolling. Meanwhile, I need to continue to really hope that I even have the RRMS and not PPMS.
Im alone. I have no family. Im young. I feel like my dream of a family and children have just been ripped away from me. So now I dont know what i'm doing anymore. And this lost and alone feeling is scary, very scary. I have a few close friends - but at this point - they have been so good to me - but they are tired - they have given what they can, but they're burnt out now. Plus, ya know, "I looks SO good" - ha! My new walker is being delivered tomorrow - friends havent seen the bruises from my falls so far - caused by the dizziness; they dont see the shower chair and the bars in the shower now, or the welts located in 7 places around my body from the daily injections. they dont see the headache that has been nonstop for 5 weeks now...that even painkillers can even touch for more than hour.
I'm so close to a complete and total meltdown. Oh wonderful, there's even an icon for it:
Need to use the icons tonight b/c i can actually see them right now - later on, I might not be able to see any of this - as the IV/SM has worn off (had it for 7 days (Jan 8-14 @ 1gram a day) and it worked for a bit - some symptoms let up for a bit - and now they are returning. Anyone know if it is too soon to go back on the solumedrol??
Sorry for my rant. I gave myself my Copaxone shot - and then I couldnt find my mini icepack (a childrens one - wrapped in a terry cover - with a polar bear on it....) Had a lil meltdown from that, too.
~Keri