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#1 Karenlee

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Posted 16 June 2008 - 02:55 AM

Hi to all my friends here and also want to welcome the newbies here as well. I'm looking forward to getting to know you all.

I've been off the forum for a while for a few reasons. First, I was in a bad way emotionally, trying to wrap my brain around my diagnosis. Also as some of you know, hubby and I were trying to go thru the in-vitro process, so it's been a whirl wind of appointments, tests etc. (I'm sure you can all relate). After a lot of back and forth between my OB, my rheumatologist and the invitro clinic, they decided at this point I am too "high risk" for the invitro process. So it's on hold for now. I suppose they want to see if I stabalize before they proceed, which I guess is a good thing.

On the upside, I've been on Plaquenil for 8 weeks now and just finally started to see improvement. The tendons/ligaments in my neck became stiff pretty much overnight about 3 weeks ago and it was pulling the skin on my chin downward. Needless to say I was a wreck over it. I could barely look in the mirror without having a pannick attack. (it was also pulling on my right fore arm). But as luck would have it, about 4 days ago I noticed those tendons softening and slowly dissapearing. My flexibility is returning slowly as well.

So, I have not for one second forgot any of you, my friends and I plan on reading up on all the threads and catching up with you. Forgive me if I dissapeared for a while. My head just wasn't in the right place.

I'm wishing health and happiness to you all!!!
Karen

#2 Purr

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Posted 16 June 2008 - 03:45 AM

Hi Karen,

Glad to hear the plaquenil is starting to help you. Patience with medication and a positive attitude seem to be good medicine too. At least it is for me. Remember we're here for you no matter what.

Take care,
Christy
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#3 truman

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Posted 16 June 2008 - 04:16 AM

Hey KarenLee:

Great to see you back on the forum. Regarding your plans being put on hold; better to do the wait and see game so you know you're all set to go when the time is right. Great about the medication working too :) . Wonderful when a drug works the first time around.

Once you get your thoughts together, get out and enjoy the rest of the summer; winter comes way too fast (ugh) :(

I feel a burst of energy today, making stuffed peppers and a pot of sauce with over ripe tomatoes I picked up at the market this morning. :lol:
Tru

It is what it is...........

#4 Karenlee

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Posted 16 June 2008 - 04:39 AM

Thanks Christy. Yep, this medication requires a LOT of patience. And this is just the beginning. Some said 6-8 weeks, some said 3 months at least, and I've also heard as long as 1 year. Yikes!

Tru, actually I just got back from my anniversary vacation. I did cheat one day and spenet a full 8 hours out on a charter boat in the blaring sun (I did slather sunblock on though). I know the doctor said no sun, but Oh,, I just had to enjoy the weather.

So, what time did you say to be there for dinner? :D Sounds yummy.

Karen

#5 Peggy

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Posted 16 June 2008 - 06:20 AM

Welcome Back! I figured something was up and was worried when I didn't see your posts as you are so good about being there for everyone. I am so glad your treatment is working. I hope you continue to see good results. I haven't had as good as luck with the IVIG. I go to the doctor next Monday and I'm afraid the CPK numbers will not have changed and then insurance won't approve any more treatments. I have such horrific muscle and joint pain even with the pain patch.

I am so sorry you have to put the invitro on hold. I think you are so smart to check with all of the specialists and to follow their advice tho. You want to make sure you are strong enough so when the time is right you and your body will be ready. I know it must be disappointing and I am so sorry.

Again, welcome back and it's good to hear from you.

Warm hugs,

Peggy

#6 Margaret

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Posted 16 June 2008 - 08:11 AM

Hi Karen Lee ,

I was wondering about you last week, but had forgotten you were doing the in-vitro process. I hope you continue to have good results with the Plaquenil and can resume your in-vitro process. As you know, it worked wonders for Gareth and others on this forum.

Take care, Everyone.
Margaret

#7 Snowbird

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Posted 16 June 2008 - 02:21 PM

Hey Karenlee

Welcome back :) :) !! Sorry to hear you were having such a rough go of things lately...but also glad to hear the medication is starting to work for you! I'm also saddened to hear your news about the in-vitro and although I'm certain it was a huge crusher to both of you, I have to agree with the others...that it's best to follow the doctors advice and to wait a little longer for now, best to be sure of everything and it does sound like you covered everything with your doctors.

Better health & happiness right back at you! ;)
Sending good wishes your way!

#8 Karenlee

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Posted 17 June 2008 - 02:10 AM

Peggy,

Sorry your not having much luck with the IVIG. Let us know how the appointment goes on Monday when you have the numbers. Maybe they will have improved enough to get approval. I'm not familiar with that treatment, but it sounds like it's not something that's payable out of pocket?

Margaret,

Thanks for the kind words. Can you tell me how long it was before Gareth saw improvement on it? That's wonderful that he's improved so much. I'm very happy to hear that.

Snowbird,

Well I think the hump of depression and fear is subsiding. I wasn't the most joyful to be around for a few weeks there lol. (props to my husband for putting up with me). And as far as the baby situation is concerned, what will be will be. I need to get healthy first. Funny how all 3 doctors were butting heads over the situation for a while. And I was smack dab in the middle of it. Surprised I didn't just throw my hands up and say forget it Lol

Again, thanks to all for your support and kindness.
Karen

#9 debonair susie

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Posted 17 June 2008 - 06:52 AM

Dear Karen,

First, I want to send you {{{{{{Soft & Lovin' Hugs}}}}}} upon your return!
You've had alot going on, but knowing you as we do...I have no doubt you will rally and emerge victorious, despite the recent turn of events.

I will keep good thoughts for you and your hubby in regard to your better health and the timing for a baby... You definitely want to be healthy and we absolutely want that for you also ;)

I'm relieved your spirits are lifting and that you're getting out and enjoying the beautiful days of summer!

Great news about the Plaquenil... I'm glad for you!

Hope you and Everyone else is having a very special day!
Hugs,
Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#10 Guest_Sadie_*

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Posted 17 June 2008 - 07:23 AM

Hi Karen,
Welcome back! We missed you! I'm so sorry to hear that you have had rough times lately.
That is good to hear that the medicine is helping you! Everyone has given you good advice.
You are in my thoughts!

Sadie

#11 Margaret

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Posted 17 June 2008 - 12:50 PM

<<Can you tell me how long it was before Gareth saw improvement on it? >>

Hi Karenlee ,

Gareth started on Plaquenil June 1. By the end of June he had his voice back....loud and clear. By mid-Aug, he looked over at me in the car one day and said "Mom....all gone. Food goes down." I questioned him about what he meant and, sure enough, he was telling me that his esophagus was working and the food wasn't getting 'stuck' anymore. His chest pain (bones, rib carriage area, sternum) seem to take the longest for the pain to go away.

Take care, Everyone.
Margaret

#12 Karenlee

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Posted 18 June 2008 - 01:22 AM

"Mom....all gone. Food goes down."

Well that brought tears to my eyes. (in a good way) :) I'm so glad for him that it worked. What a releif that must be for you, I can't even imagine. I hope that over time the rest of his pain will go away quicker. I'm sure it will since he's just started treatment and this stuff (as you know) can take a while to get in the system and do it's job.

Karen

#13 Karenlee

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Posted 18 June 2008 - 01:23 AM

And thanks for the Kind words to my two Suzies. You make me feel strong when I don't. ((((((big hugs back)))))