Going to Katowice, Poland from June 23-30

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

Postby jozee » Wed Jun 16, 2010 6:49 pm

Hi everyone,

D-mannose and cranberry pills..will be packing. Pam will you send me your list as well. Starting to think this is actually going to happen. It's very surreal.


Jozee
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Postby JoyIsMyStrength » Thu Jun 17, 2010 6:09 pm

OK everyone I'm ready to post my ragtag notes now. I'm creating a separate thread since it seems to be gaining in popularity. *sigh* My one claim to fame! :lol:

http://www.thisisms.com/ftopict-12299.html

Pam
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Postby pegmegrund » Sat Jun 19, 2010 5:24 pm

Hi Pam,

This is one of the 'other' Pams (you can call me 'Peg') just checking in on your thread so I can follow your trip to Poland.

Is there something about the name Pam that = organization? I'm a list-maker too. Good job on gathering all of those details together!

Safe travels to you and all of the others heading over soon...

Peg :wink:
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Postby JoyIsMyStrength » Sun Jun 20, 2010 5:43 am

Dear Peg,

I can't believe you sacrificed your name for moi! And yes I may appear organized because of the list but believe me, it's really for my husband. I am a disorganized disaster area but he loves lists and I love him and that's that.

Thanks for following us to Poland!

Hey "rest of the gang," I had another thought. I think I'll bring a soft cervical collar to help stabilize my neck after surgery if the doc thinks it's a good idea. Plus they are the fashion RAGE in Paris. Except we'll be in Poland. Oh well.

Pam
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Postby JoyIsMyStrength » Sun Jun 20, 2010 6:35 pm

Me again. I wanted to see when ya'll want to meet up. I don't want to miss seeing Barbara so we could try to meet at the SkyBar (Qubus Hotel) on Thur. June 24th at around 7 or 7:30 p.m. Hopefully that will work for most folks? Open to suggestions. Otherwise, I guess we need something to help us identify each other. I'm a redhead and my husband is bald and, oh yeah, I obviously need liberated. :-)

Pam
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Postby JoyIsMyStrength » Tue Jun 22, 2010 6:24 pm

Hey everyone, we recorded my pre-liberation videos and uploaded to YouTube. Please do not send off to any Hollywood producers or else my dreams of stardom will be dashed... although I did notice there was a Pamela Anderson video on the same page and I'm sure you'll notice the striking resemblance, LOL!

http://www.youtube.com/watch?v=rmiHpwlAevg
http://www.youtube.com/watch?v=oOh6j8W3Vv8

Our plane leaves tomorrow! :)

Pam
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good luck

Postby hwebb » Tue Jun 22, 2010 8:27 pm

good luck Pam. Please come home with lots of details of your treatment

Helen
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Postby Vhoenecke » Wed Jun 23, 2010 7:15 am

Thinking of you today.
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Postby tzootsi » Wed Jun 23, 2010 8:30 am

Pam, excellent videos. Best of luck on your big adventure!
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Postby JoyIsMyStrength » Thu Jun 24, 2010 12:14 pm

We are here but quite exhausted from our trip. Nice hotel. Tried to meet up at the Sky Bar tonight but left by 8:15pm. We hope to see our group tomorrow, then. Thanks for all the well wishes!

Pam
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Postby Trish317 » Thu Jun 24, 2010 1:15 pm

Sending prayers and good thoughts....
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Postby JoyIsMyStrength » Sun Jun 27, 2010 8:57 am

Greetings from Poland!

What a tiring, fascinating, fun, frustrating, heart warming, puzzling, funny... long list of adjectives... trip! I am going to make this brief and fill you in more when I'm home with a "real" keyboard instead of this cramped laptop.

I had the procedure yesterday, quick and painless. Angioplasty (no stents) both jugulars. Left and right blood flows now match. :)

Saw no immediate changes but held on to what I call my unpopularly, wildly unrealistic expectations because to me, that is hope... my hope is in the Lord... and hope is good. Was discharged today. Husband kept saying I was moving faster but all I felt was tired. Tried to walk unassisted but balance still very bad. Slept for several hours, then did a bit of sightseeing (husband on foot pushing me in wheelchair). While at a restaurant I noticed some subtle changes in sensation. When we got back to our room I could walk slowly unassisted, great improvement in balance. We are thanking God.

I'm going to heed my own advice and rest now. Much more to share but the future looks bright with hope. Congrats to those we met on our trip who are also doing better! Thanks everyone for your well wishes and prayers.

Pam
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Postby dodgeviper » Fri Jul 02, 2010 12:49 pm

Congratulations. Give it time.
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Postby msgator » Fri Jul 02, 2010 5:15 pm

keep the updates coming

:)

Ann
always look on the bright side of life

Veins opened 10/15/10. RIJV still on the small side. Feeling much better.
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Postby JoyIsMyStrength » Sat Jul 03, 2010 4:00 am

I'm sorry I haven't updated this. I had some wonderful improvements:

- Fatigue cut in half
- Balance greatly improved
- Able to walk slowly unassisted (but probably would at least need a cane as foot drop still there)
- Faster movements, e.g., getting in and out of the car no longer a prolonged, slow ordeal requiring assistance - I could do it myself
- Insomnia completely resolved - this is huge

Today I am sad to report that I am back to being a slow-moving sloth. None of the improvements lasted. I wish so much that I had recorded an "after" video while the going was good, but the improvements got better every day and I was waiting a bit. Unfortunately when I awoke the other day, it became increasingly clear that I was back to square one.

The only improvement that stayed, to my surprise and delight, is the resolved insomnia. For the first time in my life I can sleep, when I'm tired, without fighting wakefulness for hours on end before drifting off. That's a wonderful thing and I'm grateful for it.

I assume I have restenosed. I'm hoping someone will tell me that the improvements could come back over time. We had hoped for stents to help ensure that restenosis would not occur, and we told the doctor we were ok with stents, but I guess it's a judgment call for them so that's that.

Right now my left foot is so purple the toes look almost black but this is not continuous -- the discoloration comes and goes in varying degrees of red, purple, and near-normal. There is pitting edema in both feet. My left leg aches off and on during the day. I know this subject has been beaten to death but could that earn me a venogram state-side to test for May-Thurner? I don't know how to approach it.

I feel a bit beaten up after all of this. My Poland adventure didn't match the fairy tale in my head. I was already quietly working on going local and had an MRV done before I left, but when the opportunity to get this done sooner than the estimated "hopefully sometime next year" came along, my weary body said "yes" and my weary, longsuffering, patient husband said "yes." We took the lifeline. We did what we felt was right for us before I wound up bedridden. The positive thing that came out of this is: We know treatment for CCSVI works. We know that opening up my jugular veins caused remarkable improvements. We know this is the right course.

Anyway I will be posting more about the reality of treatment in Poland in a separate thread.

Thanks to everyone for all the support. I enjoyed meeting so many wonderful people in Poland... I missed a lot of the folks who wanted to meet up and I'm not sure what happened to them... but I hope and pray that they were helped and that their improvements have continued.

Joy is STILL my strength! There is disappointment, sure, but I'll get over it. Joy isn't dependent on circumstances and it bubbles up inside me and fights against the gloom. My outlook is sunny. I will not give up and I will not give in. 8)

Pam
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