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CT Myelogram test

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Hi buttons,

 

As has already been said...you have so much going on and we only want for you to be pain-free and without these horrible compressions and problems that you've had to tolerate for far too long.

 

Here are more {{{{HUGS of COMFORT :emoticon-hug:}}}} which I hope will help calm your surgery fears.

May you feel the true caring and support of your "Family" here, during these days ahead of you.


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Buttons, glad to hear you have completed all tests and are ready to step forward and have the surgery. Please keep all of us informed on your well being during your entire recovery time. Looking forward to hear that all your tingling and balance problems are gone.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hi Buttons

 

Sorry to hear the results mean surgery but hopefully, in the end, it will give you the relief you so much deserve. Try to keep us updated when you can ok.


Sending good wishes your way!

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Buttons,

 

I know surgery can be scary, I was a mess the months before my kidney transplant, but after it became time for it I was calm and just knew everything would be okay. Your's sounds like a difficult surgery and you will face a long recovery, but the end results will make it all worth it. Try not to worry about it during the waiting period. Make sure you have plenty of help after, don't be afraid to accept people's offers to do things for you, they want to help. Stay strong and keep us updated. I'll be thinking of you.

 

miocean


ISN Artist

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Hi everyone and thanks for the kind words but I received a letter today to say they have rescheduled the operation for the 14th December!

 

They haven't given a reason and I've been trying to find out more but can't get through to the hospital, I am so fed up! I was getting myself geared up because I am so nervous about it and now I will have to wait another 3 weeks! I had the pre-op assessment last week but ended up having to go back for more blood tests. They said there was a problem with the coagulation levels - it took an hour and half to get 4 vials of blood along with the nurse trying 4 times and then calling a doctor and he had 3 goes before finally doing it with just an ordinary syringe. So now I'm black and blue all over my arms. They even had a go in my foot!

 

So feeling pretty miserable now because it looks like I will not be too clever over the coming festivities.

 

Buttons

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Hi Buttons,

 

What a nuisance! No wonder you are fed up - it's especially bad that the new date puts it so close to the holidays. Time to get yourself a swanky new dressing gown and pajamas and just lie on the sofa during the festivities. Let everyone take care of you and you just pretend to be Queen of Winter!

 

I'd hug you, Honey, but I imagine you'd rather have something to throw - here's a virtual teddy to toss. :temper-tantrum:


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Buttons

 

What an absolute pain!! There's nothing worse than gearing yourself up with a date in mind and then being let down so near the actual time. :angry:

 

I'm so sorry; it's also a shame that you've been treated like a human dartboard! Still there is a positive in that you do appear to have another definate date for your operation, which hopefully this time the hospital will be able to stick to.

 

As Jeannie's already sent you something to throw, I'll send you some :flowers: and a :emoticon-hug:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello Buttons

 

Foot?! What?!

 

I'm sorry you're surgery has been rescheduled, particularly as you want to get it out of the way. Maybe it's for your benefit? When Ma broke her hip she did so on a Thursday and they made her wait until Saturday to have her operation. It turned out they had done so to put her on the list of the most experienced surgeon.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Awww Buttons, I'm so sorry. The waiting is the worst in most situations! I hope you can relax, my friend, and do not worry about the festivities, just let everybody take care of you. I have to tell you I got that surgery in 2002. Of course I was healthy then (at least it looks like that). The surgery was on Dec 12 and my Doctor and I did very good,so good I am walking. So be positive, put yourself in a good place mentally, (always helps). Let us know so we can give you a soft hug. I'll keep you and your family in my thoughts, Patty

flowers.gif

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Hi Buttons,

 

I'm really sorry to hear your surgery has been postponed. I'm sure you'll be able to roll with the punches, but that is definitely a punch!

 

There is something to our own psychological timetable for surgeries. It's like there is a certain amount of bracing we do, and somehow we leverage it out over the allotted time. Then when things change (either sooner or later) it feels like more of an adjustment than the surgery itself. Like, the hardest thing regarding my husband's lung transplant wasn't the testing, the surgery, the drugs, the aftercare; the thing that took the most energy for us was planning for the unknown, as we never knew what hour of the day or night it would be. So you feel braced, but for when? And moving things out further means even more of a stretch when we need to calm ourselves, brace ourselves, keep our positive attitude in high gear and cope with the problematic symptoms, too.

 

Well, not much you can do about it anyway, is there? So you might as well dub the extra wait your "party time" and see how much extra fun you can squeeze into those extra days pre-surgery. What can you plan or do before then, that you couldn't otherwise? You will sure have a little more time to prepare for the holidays, as I'll bet they are otherwise rather off the radar for you, with your upcoming recovery.

 

Yes, it's a drag! But we'll be here, dragging right along with you.

 

:emoticon-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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The waiting is the worst thing and I suppose we should all be used it with all the tests etc that we have to deal but it doesn't get any easier. At least I won't miss too many of my Tai Chi sessions before the holidays, it does help with my movement and helps me too relax a little which is what I need at the moment.

 

I am feeling a little better, as you say Shelley you just have to pick yourself up and get on with things. I am going to visit a few old friends and some family who live quite a distance from me. I am pretty well up with all the holiday things so for once I am ahead of myself.

 

I also managed to speak to the consultant yesterday and he was very kind and answered my long list of questions I'd prepared (all written down of course) which has helped somewhat.

 

Thanks for the kind words, it's good to know you have others support.

 

Buttons

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Oh Buttons, I'm also sorry to read that things are delayed, but so glad you were able to visit with the consultant, which must have "helped" calm you a bit.

 

Anticipation really seems to take a lot of energy from those of us with chronic illness. I'm so glad to see you practice Tai Chi, which must really help "calm" your body.

 

I will be keeping you in my thoughts as you await your surgery.

Thank you for keeping us posted!

 

In the meantime, some {{{{Soft Hugs}}}} to use liberally ;)


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Aawww Buttons, Sorry to hear you were a pin cushion per se, sure glad that's over for you now!

 

I agree....just try the best you can to put yourself in the right frame of mind and everything else will follow as it should.

 

As for the festivities, you'll hopefully be ready with a full appetite to eat all the goodies your family and friends make for you (not really so bad if there is no cooking for you to do now, is it?). Especially good that you are already a little ahead yourself for the holidays too. Keep us updated.


Sending good wishes your way!

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Hi Buttons

 

I'm so sorry you had to go through so much lately, as you probably know my sister has been through so much lately also. The best we can do is keep our chin up and always hope for the best!! Plenty of hugs for you! :emoticon-hug: :emoticon-hug: :emoticon-hug:

Sincerely,

 

northstarhope*


northstarhope* :emoticons-i-care:  :thank-you: 

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