Scared spitless

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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ppicklee
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Scared spitless

Post by ppicklee »

OK now what. The title of this subject says it all. I can have my date for the procedure with Dr. Mehta soon. I am a quad due to this disease. (Obviously). So why am my so scared? Is it the outlay of money. Yes and no. Is it that I might disappoint my husband and family if nothing changes. Yes. Crap... now what
Stayed shyly in the shadows because I've been where everyone has been and then some. (Didn't want to scare anyone) but now... 16 years. Spit. (You could spell that last word however you like.) Well I'm out of the shadow and screaming. YIKES
Cece
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Re: Scared spitless

Post by Cece »

ppicklee wrote:OK now what. The title of this subject says it all. I can have my date for the procedure with Dr. Mehta soon. I am a quad due to this disease. (Obviously). So why am my so scared? Is it the outlay of money. Yes and no. Is it that I might disappoint my husband and family if nothing changes. Yes. Crap... now what
Stayed shyly in the shadows because I've been where everyone has been and then some. (Didn't want to scare anyone) but now... 16 years. Spit. (You could spell that last word however you like.) Well I'm out of the shadow and screaming. YIKES
Oh my gosh. I am so happy for you that you have your appt with Mehta! How soon is it? Very soon? Please ask your husband and family if they will be disappointed if nothing changes...the answer might be, yes, a little, but mainly for your sake, because they love you and want the best for you...and feeling bad over something you can't control isn't good! I hope hope hope that the procedure leaves you feeling better. But stopping progression is huge too, it's something that's never been possible in the history of MS and now maybe it is possible. Wishing you the best!!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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BooBear
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Post by BooBear »

I second Cece's words- I too was a bit scared at first, likely because I was a bit overwhelmed that this was really, really going to happen for me.

Over time (not weeks but days), I began to realize that my expectations set the tone for my family's expectations. I know that they want the best for me- especially my hubby, who has faithfully performed my injections for me until I gave up CRABS altogether several weeks ago.

But I told them that if all we got out of it was no worsening, that I would be ok with that. They, of course, want the miracle- and maybe I will get the miracle- but I know that if I am ok, they will be ok.

Thank God that you got scheduled and you know you are going to do something right for your body to fight this illness!! My prayers are with you- hang in there! You not only have your family, but you have all of us here as well!
Three veins angioplastied.  One renewed life.  
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ozarkcanoer
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Post by ozarkcanoer »

Hi ppicklee, I think you are scared for all those reasons you gave. If you have decided to go for the CCSVI procedure and your family is behind you then all of you know that this is not a sure thing. I hope you aren't going into debt or experiencing any financial hardship to pay for the procedure. But if you have decided that this is the time for you then go into it with your eyes wide open. You didn't cause your MS and you really have little to do with the outcome except to hold onto hope. You could always wait a year and see how this all progresses. Let me tell you I am scared too and I am not a quad. You must be a very courageous person. I think everyone who has had to make this decision has been afraid. Join the crowd. (((ppicklee)))

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elyse_peace
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Post by elyse_peace »

ppicklee, i'm so sorry for your difficulties.
here in the wings, we kinda hold our collective breath, hoping to hear that all is going well, while we try to make our own difficult decisions.
Please do not let your (very reasonable) fear get in the way of keeping up your strength of spirit. You must be very strong to have gotten this far. The most positive attitude you can achieve will help you through the "spit." Refuse to be beaten. Your family will love and need you as they do now.
I hope that your journey will become easier. No matter what, the birds will still sing. Birdsong always lifts my spirits.
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hannakat
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Post by hannakat »

ppicklee.... Hopefully our combined good vibes will help you through this! It's awesome news! I know it's scary, especially the what if's.... but if you didn't step out and do this...ahhhhh..... now that would be a terrible disappointment and I think your family would feel that too.

I'll be sending +++++++++ VIBES your way (and lift you up in prayer).

{{{{{{{HUG}}}}}}}}
and take some calming, deep breaths...then smile!
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ppicklee
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Post by ppicklee »

:-) oh great ... just what I needed!! :-) now I am crying because of all of your support and wonderfulness (and yes that a real word) my voice command hates crying!! You know how long this takes me?? Oh spit. Now I/we called back to set up the dates and we only got a machine. SCREAM. This roller coaster ride has been almost nine months long. I think I could have a baby in that time. Am I right or am I right.
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blossom
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Post by blossom »

ppicklee, even scared "spitless" i gotta admire your way with words. humor and truth helps. i'm not making light of your emotions right now at all believe me. i'll bet you nailed it for a lot more people than you realize that are soon to be going through this treatment. on the same note, i hope you know that all the hopes and prayers being sent your way for you to "come back a kicking and spitting" are sincere and meant from our hearts. so, go and bring back another success story.
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girlgeek33
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Post by girlgeek33 »

We are all here for you! Just remember, even if you don't notice some changes, in time you may see more. Make arrangements for physical therapy so they can get your muscles back to better health... :)
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ppicklee
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Post by ppicklee »

Now the roller coaster ride is at a lull. I thought that the up-and-down was bad... but now... the lull is almost worse. I don't have an appointment scheduled, I have not gotten another call so... now what. Thank you Ozark but no, I am not mortgaging "the farm". Girlgeek I would love to do physical therapy. Spit... I would pretty much love to do anything at all. My family is at one end of the country and I am in the middle. So my honey and I have basically been doing this alone. I think I scared one of them back in 2002 and they all came out that summer. Thought I was dying. After that summer I probably was after all of that company. :-) Now I'm looking at scheduling (for the second time) and I don't have the heart to tell them just in case it goes away of the dodo bird AGAIN. Does anybody have anything to report from their treatment with Mehta? PM me if you want. Thanks everyone.
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aliyalex
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Post by aliyalex »

Hi Pip,

I received my date this morning from the same group. I had to call back to confirm my date and sent an email confirming the confirmation. Megan got my email 1st and called me back. She got my message while we were still talking. So, they are getting messages well.

I , too, am interested (VERY!) in hearing information about Dr Mehta, though I remember excellent reports.

I got an email from Megan and I told her someone was waiting for her callback.

All the best, Aliyah
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