Excited, numb, scared, you name it -- liberation today!!!!!!

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

Postby Trish317 » Thu Jul 29, 2010 7:31 pm

Praying for continued improvements. Take good care of yourself, Bluesky.
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Postby Guider » Thu Jul 29, 2010 8:30 pm

Oh Bluesky, I am so glad I found your thread. I feel it's a privilege to be privy to the information you shared. Your children certainly sound like a real blessing in your life.

Please be extra cautious in the next few days. And post updates from time to time even when you feel you have reached the stars with your improvements. I guess I'm trying to say ' please don't forget us'.

The more I have read on these forums the more I wish I could actually meet everyone face to face.

God Bless :D :D :!:

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Live to the fullest; Love passionately; Laugh contagiously!
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Postby Guider » Thu Jul 29, 2010 8:32 pm

Oops!!

That should read Guider not Guilder. Too excited I guess.

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Postby hope410 » Thu Jul 29, 2010 11:49 pm

bluesky,

It is so wonderful to hear from you about your experience and the sense of bright eyed discovery of getting to know the "new you". You sound full of such wonderment at what you're experiencing in terms of bodily changes.

The popping open your incision - yikes! Glad everyone reacted quickly and everything was brought back under control. Guess it's a major vein, so that's why one needs to be super careful until it heals.

Were you stented? Did they put a catheter in for the procedure? I forget if you said it, but are you on blood thinners?

Continued healing. If you're sore, there's probably an inflammatory reaction going on, so it'll take your body some time to settle back down so you can assess how you are and you can see what else might change as well - but it sure sounds promising though!

Glad your kids could be a part of your experience (except for the bleeding part), it sounds like it was a good experience for them as well.

Take care of yourself and looking forward to further reports as you continue to heal! Thanks so much for sharing your experience.
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Postby bluesky63 » Fri Jul 30, 2010 7:06 pm

I want to thank every one of you for every single bit of advice, every encouragement, every positive thought, and all this incredible support. I can't tell you how much it means to us. :-)

I have time for only a very quick note here, but here are a few things, for better or worse.

- not as sore today -- a big relief!

- I am salivating -- ??

- I am yawning

- I don't know if this is more for higher edss, but you really ought to allow lots of time for recovery if you are traveling at all. I allowed three extra days after and feel like that was not enough -- at least not at a higher edss

- I bled again when I took off the dressing tonight and had to lie flat with pressure again; this is worrisome; there are big bruised streaks; I talked to the medical staff, but I hope it closes up soon!

- still the same on the left eye

- my children comment that I am more stable and not grabbing for support :-)

- still weak -- if I try to do anything much I get shivery, but that's different from tremory - ?

More later - :-)
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Postby Cece » Fri Jul 30, 2010 7:17 pm

Thanks for the update, bluesky, please take it easy and give your body lots of time to recover if you can!!
"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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Postby PCakes » Fri Jul 30, 2010 7:29 pm

first things first.. get that incision/bleeding under control.. priority one!
slow and easy.. TiMS can and will wait..:)
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Postby hope410 » Fri Jul 30, 2010 7:34 pm

!!!!!R-E-S-T!!!!!!

:)
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Postby HappyPoet » Fri Jul 30, 2010 7:42 pm

Bluesky,
So good to hear from you.
Don't forget the Four R's: Remember to Rest, Recuperate, Relax

You know how to reach me,
~HP
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Postby vivavie » Sat Jul 31, 2010 9:00 am

I am not high edss but YES the saliva thing is real! I was so used living without it that it was a real challenge to deal with; drowling during the night, spitting when talking, stomach sick,etc. It was most suprising because I always thought it was a secondary effect of my tongue cancer! Impossible for any neuro to blame placebo for that!?!?

Take care! I am happy your children are there for you! I am also a single mother, my 16 year old son has known me only sick and I think he is immunised of treatements and hopes... he was and still is totally indifferent:(
Probably his way of coping but still...

Good luck and enjoy the ride! there will be ups and downs!
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Postby newfie-girl » Sat Jul 31, 2010 10:01 am

Bluesky, I feel you are such a beautiful person, both inside and out. Your courage is inspirational and sharing your amazing journey with us has been very informative to all who will soon travel down the same road.

I wish you continued improvement and " blue skys" with sunny days ahead. Stay rested and keep us posted, we are all cheering for you and your kids. God Bless You All. :)
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Postby L » Sat Jul 31, 2010 11:15 am

Glad it's a success!
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Postby belsadie » Mon Aug 02, 2010 2:58 am

Bluesky..You are one fantastic girl!..I'm sure your improvements will match your hardships through this procedure.....
I've just been liberated but am totally humbled by your experiences!
Time is the great healer. Let's give it all the time it needs to deliver us from this evil........
My prayers are with you....Good Luck and God's speed................................
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Postby Drury » Wed Aug 04, 2010 11:12 am

Bluesky,

I am deeply moved by your story and so grateful that you have kept us updated.

Please take it easy and try to give yourself lots of loving care.

Praying for continued improvements.

God bless,
Drury
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Postby bluesky63 » Thu Aug 05, 2010 6:20 am

Me again, with a one-week report. I am so emotional reading each person's words. Everyone is a real person to me whose soul and support somes through so clearly, and I am moved to tears as I read your wonderful replies

* Still salivating. I have to agree -- how can you have placebo salivating?! :-) Along with that is an odd sensation in the back of my jaws. I don't know if this the re-emergence of sensation that hasn't been there or something different.

* My eyes are also more moist. (Now I sound like a Bassett hound. Moist eyes, drooling . . . ) The main effect of this is that my vision is more sharp.

* Absolutely no change on the double vision thing. My son looked closely at my eyes and said my pupil was also still "odd" compared to the other one. (My left eye has been semi-paralyzed for years.) So I still don't want anyone to sit on my left. At least if they want me to look at them. :-)

* At some point I read out loud to my son without falling asleep or talking nonsense. This is astounding. :-)

* I watched a movie without falling asleep.

* I bought deoderant for the first time in years -- I was actually perspiring! I felt my armpits prickle, and I was amazed. This prompted an interesting discussion with my 12-year-old son, who wanted to know what I was buying and why. :-)

OK, now this is different stuff. Yesterday morning I was just so happy because I thought, it's been a week! I think it's OK! It looked like a great day, I washed my hair and my arms felt stronger, and I got to the end of doing my hair and didn't feel nauseated. Amazing!

I was bursting was feeling so great, and -- this is very personal, so why am I saying it on this huge impersonal forum? but here goes -- so often when I have something like that my first impulse is to immediately share it with my sister, who was one of my best friends, because she'd be so happy too -- but then a beat too late I remember that she died almost fifteen years ago, and I was so sad that just lost it.

I am convinced that these same vascular issues contributed to her death, and again -- this is very personal -- I made a commitment when I first started exploring CCSVI that if I regained my health I would give back, so that what happened to her and her family wouldn't happen to other people.

But the day just seemed to go downhill from there, and I don't know if it was stress, or activity, but by evening I had that feeling in my throat like it was being squeezed, and my legs felt weaker than ever, and I felt more fatigued than ever, and my hands, which had been calm, had a fine tremor back. And my legs are feeling stiffer. They *were* feeling more smooth and I cut back on my baclofen during the week. Maybe that was a mistake? Maybe it's rebound stiffness?

Last night I was mad at myself for allowing myself to get happy that things were being positive because then I started feeling worse. Irish logic. And then I was so heartbroken at the thought that I had tasted how much better it could be, *even a little bit,* after all these years, and seen how much it meant to my children, who have been so awesome, and I couldn't stand the thought of going backwards. I'm thinking so much about every little thing and it's so very emotional.

This morning I have a sore throat. So . . . am I sick? Am I stressed? Without going into it, I have enormous personal stressors in my life, and I did have a two-plus hour meeting with an attorney the day on Tuesday. I just really, really hope that things are not going to go away. My oldest daughter was very negative about me doing this in the first place -- she said, "Haven't you read Flowers for Algernon?" :-) (She didn't go with me, by the way, just the younger two.)

On the other hand, I have started sweating, and I am still salivating. :-)

So if what I get out of this so far is some very expensive sweat and spit, is that good progress for a week? :-)
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