Feb 072012
 

just got an email from the neuro’s office….

they are scheduling mri’s…. yuck… thoracic and lumbar

i don’t want to do them…… it’s not painful or hard or anything like that…

of course, being in that tube isn’t my favorite thing but it’s not the worst of tests i’ve done…

there are a few reasons i don’t want to do it….

  1. money… sheesh… i hate dropping $400 for this crap
  2. don’t really want to know if there are new lesions – how many, how big etc…

you see, so long as i don’t have proof of anything like gaping holes in my myelin, well, i can sort of pretend that things aren’t progressing…

17 months post dx i have settled into the idea that i have this beast of a disease… finally accept it, sort of… i am learning to live my life and make adjustments…but see, if i go for the mri’s and find new damage… somehow, it’s like starting all over again…

do you guys feel the same when you relapse or when they discover new damage? does it feel like a big shot to the heart (brain) all over again?

i’m feeling like i did before i had the answers… that uneasy, i just wanna cry while curled up in a fetal position feeling… i’ve had 17 months to deny the fact that this IS going to progress… i WILL get worse… i AM sick…

the white spots will shatter me all over again….

fear creeps back in

tears follow

the abyss is tugging and sucking…

looking for something to grab on to so i don’t get sucked in

 

Being an adult is like looking both ways before you cross the street and then getting hit by an airplane.

  12 Responses to “shot to the heart”

  1. Sherri, I guess I do know what you’re feeling, as I am Cleopatra (the QUEEN OF DE-NILE)! It’s so hard having to face this MonSter every day. I hope it works out well for you. And we’re all here for you, so let us know how you make out.
    Peace,
    Muff

  2. Okay your going to get more information, good or bad will it really change how you are doing? Right now!
    My point is not long ago, I got a call for a study I’m in after they received my latest MRI. The Doctor was asking to speak to my care giver, telling him can you talk to me to instead. Long story short, with what he saw on the MRI he wanted to ask my care givers permission to keep me in the study, and was surprised that was able talking on phone, taking care of myself for the most part anyway. The MRI is just information, how well you use what you’ve got to work with, does not show up on a MRI. All I can say is your will, mind and heart are what really counts.

  3. I can not add much to what we have said before. But yeah it does make it harder for me to ignore, I don’t know what knowing about more lesions does other than remind me . … I try not to get stressed over test results – I do not always succeed.

  4. Well, fuck.

    That’s all I’ve got.

    I’m so sorry for all you are dealing with and going through. I so wish I could do more than pray for you, my dear sweet crazy friend.

    Sending all the love I can.

  5. Hi Sherri,

    I’d lost track of you for a long time (since your Twitter account got hijacked) so I’ve got some catching up to do…but I guess you are experiencing some stuff your neuro thinks are indicative of spinal lesions. Man, are you lucky or what?!

    The MSAA has a grant program where one can apply for help with the cost of an MRI. I’m sorry, I don’t know details. My own neuro’s office is putting an application in the mail to me (one of the 40+ million Americans without health insurance). Maybe you’re interested, maybe not; but would an MRI be more palatable if someone else was paying the $400?

    Yeah…didn’t really think so.

    Anne

  6. Oh Sherri I am so so sorry. I hate MRIs too. They are expensive and I found out after the first that I am claustrophobic. And I don’t want to know about new white spots until you can cure them. I have had 19 years to your 17 months and it is still sucky. Good luck, and we will offer you as much support as we can in the blogosphere.

  7. We’re all behind you, around you, holding your hand and just loving you. Whatever happens, we always find the strength ~
    i know that fear all too well. But it breaks into pieces after a while. hug, big strong hug to you.

  8. Living up here in Canada where things like MRI’s are covered through our medical plan I don’t consider how much they cost. It really adds insult to injury.

    Sherri, I don’t know what to say. I am learning (no, make that I *have learned* that in life there are no words that can bring comfort. When I read about sickness, disease and loss I am stuck just staring at the keyboard. Your world is spinning out of control. Grab onto coach’s hand. Grab God’s hand too. Post and grab onto my hand. At the end of the day all we are left with is faith and our relationship with others. I know if it was not for blogging I would not have been doing as well as I am. I am glad you are reaching out. xo

  9. Yes, Sherri, reach out to all the hands that will meet you half way. We have all been where you are. Even after many more years than you post diagnosis, there still remains for me always the question, what is going on in that brain of mine and where is it going to take me? I’m not saying, deny the fear, but don’t let it take over your life, especially ahead of time. I send you peace and light and love, my friend.

  10. For me, it’s better to know what is going on. I “know” anyway… long before the mri results are in.
    Stay strong, you are in my thoughts and prayers.

  11. Hold my hand.
    We’ll get through it together.

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