and another newbie!

New members should feel free to introduce themselves here

and another newbie!

Postby merrily » Fri Oct 05, 2007 7:58 am

[b
my name really IS merrily, but I have decided to spell the darned name any way I like it. (the mom likes marilee)
So yes, I am abit rebellious when it comes to my mom, we just rub each other that way. If anyone needs a travel agent, contact me, she can try sending you on a guilt trip, bags packed and all.!! & believe me she is good.
I truely had no intention of introducing myself thru a critical remark about my mom, so I shall go on.
I just turned 59. OH<OH this is only the 3rd time I have written it & it seems so OLD. Yet I, other than the M>S than wants to follow me around and has since 1996, I think and feel younger than what the mirror is trying to say!
I came to this site after trying to read a comparison mri report (is it in english?) but I got enough of the wrap up of it, to know with out a doubt, this:(verbatim) too many new lesions to count , and the last remark was patient has substancial burden of the disease of muliple sclerosis.
I cried and cried in the parking lot of the hospital where I went for the records, & just sat in my car in some kind of daze i have never known before. I mean, 2 hours had gone by, nurses shifts have changed and I cannot move. I think seeing all the 'crap' in black and white staring up at me made me the saddest I have been since 1996. I couldn't hide, deny, just cry.
However I did finally get home and sat in the dark and didn't answer my phone. The sound of a voice of someone nice would have started the crying even more.
I would like you to know I have never ever wondered WHY ME? I still don't , someone had to take up the statistic. why not me?
My concern is my depression, and its killing me, as I am known to be so strong, fun, and all that junk.
I take effexor, but maybe I have been on it too long-- it's been years. My therapy has always been with an interferon AVONEX THEN REBIF. My neurologist , knowing of my severe deppression said "stop the rebif until we meet again" which is next week.
I guess I am feeling lost, lonely and friendless as we know, no one wants to really know, How are you doing!! I need to vent, is that apparant.?
I apologize if the intro section should be about cutsie things like I live alone, want a small dog, have one son who lives about 20-30 minutes away. He's so cool. man, took him awhile to be very likeable, cuz what HE liked was every drug known to the human race.
I am proud and oh so happy to say that a few events happened to him that changed his world around and I am go grateful. You'd even like him ! ( he's single and the girls say, way good looking) I say this if anyone is around the age of 35 to 40 , I'll introduce you! He's so straight now that he asks me what I am taking when I take an aspirn, for gods sake. but better that way............
ok, I have critized mom, told you almost more about my son than myself, and cry baby'd re: an MRI comparison.
Well, I said it so I am gonna stick to it and hopefully you'll accept this as maybe my way of saying, geez i am glad someone is out there.
merrilyl[/b]
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Postby REDHAIRANDTEMPER » Fri Oct 05, 2007 9:26 am

first welcome to the group..second i can understand how you feel and i am sure that all of us have felt that way at one point and time,,,,i am at the point where i still dont know offically they havent told me i have this but my dr pats my hand and says soon those lesions will show themselves and we will get ya going on treatment....somedays i want to beat my head against the wall...other days i am fine...however i do have the days where i want to cry and scream and yell but with my kids and everything i do with them i dont..but believe me i have done the not answering the phone and wanting to cry all day and nite...here is a great place to vent and let your feeling out....everyone helps and knows where you are coming from cause they all have been there....try and keep your head high

chris
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Re: and another newbie!

Postby Lyon » Fri Oct 05, 2007 1:25 pm

merrily wrote: I came to this site after trying to read a comparison mri report (is it in english?) but I got enough of the wrap up of it, to know with out a doubt, this:(verbatim) too many new lesions to count , and the last remark was patient has substancial burden of the disease of muliple sclerosis.
Hi merrily,
Welcome to the site. No one can blame you for your sadness, but I'm sorry you're so sad.

"Comparison mri" implies that you've had one or more earlier mri's. Before reading too much into this last mri it's important to ascertain whether all your mri's were done on the same machine, under the same conditions or if all your previous mri's were done in an ancient "Toastmaster" and this last mri was done on the latest 8 Tesla machine which rocks the cars in the parking lot.

Likely, even the newly diagnosed are going to show "too many lesions to count" in the most discerning machines and testing procedures.

To emphasize that point, my wife's neuro here at MSU went from a 1.5 to a 3.0 Tesla and she complained that the 3.0 shows "too much" detail.

If all your mri's have been in the same machine under the same testing conditions, feel free to freak out. Otherwise, it might not be warranted.

Bob
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Postby AllyB » Fri Oct 05, 2007 2:47 pm

Hey Merrily

Welcome to the site, and I am also very sorry that you are so down. I can also relate to how you feel, having been through times of depression (I took Cipralex). It is important, I think, to vent to people you know what you are going through (it even helps that they are not people you see every day!), to acknowledge that you have a right to how you are feeling, wallow a bit (we are all entitled), and then get some help in moving forward. Although this disease is really scary, we can still have a good life, if we see each day as a blessing.
There is also not a huge correlation between lesion load and clinical symptoms/progression, and while mri's are great diagnostic tools and good ways to measure effectivness of treatment, how you are actually feeling is just as important, and emotions can affect that. Bob also makes a great point regarding the accuracy of the machines that were used previously, compared to what was used now?

Lastly, feel free to vent anytime you like - we will all try to listen and help if we can - this is a great sounding board, and also the best source of information on ms you will find - these guys here (and gals, I wasn't being sexist) are better informed than most docs - take advantage, they are all happy to help out.

All the best and take care.
Al
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Postby TwistedHelix » Sun Oct 07, 2007 6:44 am

Hello there, merrily,
First of all welcome to the site and second, never feel bad about venting your feelings! Third, thank you for admitting you're older than me… I was beginning to feel pretty isolated amongst all these spring chickens!

I'm only guessing here, but when the doctors talk about " substantial burden of disease" I think they're usually referring to disability and not necessarily lesion load – not that that makes any difference of course: it really hurts to be slapped in the face with the reality of everything and, even if we think we have faced up to the truth of our condition and accepted our disability, reading about it, or hearing someone talk about it, is like opening the wound all over again.

But I think there's another, hidden, burden in your post: it's in the sentence " I am known to be so strong, fun…", it is an enormous effort to try and keep up that front when everything feels as if it's collapsing beneath you, especially if you have that secret fear that people only like you when you are that strong, fun person, and will quickly drop you if you reveal the pain inside. You need somebody – just one person – who you can be completely honest with and share your anxiety; drop the pretence and stop struggling to be the old you, and if you haven't got someone like that in your daily life you'll find them by the bucket load in this forum.

Sounds to me as if you've got every reason to be proud of your son. Don't worry about sharing other parts of your life: we are all so much more than our illness, and it's nice to read an introduction which gives us a glimpse into the person behind it, (maybe I'll get around to writing one myself, one day),
Dom
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