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Sarah_Smith

Some questions

36 posts in this topic

Hi all. So the party was a success, even though I had to move it from Saturday to Sunday because of rain. Tomorrow will be 3 weeks of no smoking, so hooray for me. :emoticons-yes:

 

I finally got to go to my rheumatologist today after 2 years of not seeing him and not having my meds. He said every thing is looking great, my rheumatoid arthritis (RA) was flaring a little, but he said my Scleroderma was still only mild. He listened to my lungs and said they sounded great and so did my heart, so he is only going to order some baseline tests for me in the next couple of months. They started me on my usual methotrexate and prednisone, I knew they would. And they also started me on a pain med, and he is also wanting me to try something called Neurontin for my back pain.

 

He said he was really impressed with how little the Sclero has progressed, especially since I have been on any meds in 2 years. He said I had very little skin involvement and my internal stuff was still all in perfect working order, even after having this for all these years. He said after I get my TB test done, he wants to try me on a new Infusion of a medication that it used to be for Lymphoma cancers, but has been passed recently for the treatment of RA and has also shown some promise for treating Sclero. It is a 2 hour infusion I will get twice a year. Didn't sound too bad to me. He said with that and my methotrexate together, that it should throw me into remission, so here's hoping it will all work out.

 

Wish me luck, and I will keep you all posted.

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Sarah...that is ALL wonderful news! I am so happy for you. I am also very PROUD of you for not smoking!

I knew you could do it...keep up ALL the good work now. Not smoking anymore is a lifelong decision....help yourself to get well again. YEAH SARAH!!!!! YOU GO GIRL! :emoticon-hug:

Catty

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Hi Sarah,

 

That all sounds like reason to throw another party! :happy-day:

 

We haven't had a virtual party in a long time on the Fun and Friendship Forum - I think we should throw one before the "summer" is over (cold and rainy here too~). I'll let you all know a date soon.

 

Congratulations from me too on 3-weeks of smoke free lungs!


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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Yes, yes, party-time! Only this one, somebody else needs to host it. Jeannie, you have lots of open space out there in the Rockies, don't you? And your remodeling must be nearly complete as you've been at it for about 75 years.

 

Pick a date! Maybe Sarah's one-month anniversary of breathing only healthy, fresh air? :happy-day:


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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You bet Sarah...that's good news, no smoking in 3 weeks and even better that things have remained mild in your progression....and here's wishing you tons and tons of luck to be in the throws of remission with the new infusion, sounds like you're going for it! Will be looking forward to your updates.


Sending good wishes your way!

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Sarah, how are you doing in your quest to breathe fresh, clean air? Have you encountered any stumbling blocks, or are you zooming in on your two-month mark soon?

 

We're all rooting for you, you know!


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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Well, I have hit one wall...I got really stressed a couple of days ago and I smoked 2 that day, but I have gone back on the gum and havn't had anymore slips...I still think I am doing good, 2 in a month isn't bad. I felt really bad for slipping and it also made me really sick, so I don't think I will be doing it anymore. I am also starting to have really bad heartburn, and the usual antacids aren't stopping it anymore, so my RA doctor has me taking some over the counter acid blockers, but other than that I am doing really good. Thanks to everyone on here for checking on me and worrying about me, it means a lot. You guys are so sweet. I will catch you up when I know more.

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Way to go, Sarah! I bet that slip (and getting sick after it!) really strengthened your resolve. Sorry to hear about the GERD though - that's truly lousy timing for it to get worse with BBQ season in full swing! ;) The best ever BBQ I had came from Muskogee!

 

Stay cool in the hot weather and just remember, smoking adds heat.

 

 

Hugs,


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 Sarah,

 

Congratulations on your progress! It's exciting that you learned from your little slip, and went back on the gum. Learning from our experiences is the most important of all. I quit at least 200 times before I had a lasting quit -- but I learned something from every attempt until finally it all came together. Same with you -- you're determined and you are learning and you are sticking to it, and that is what matters. One of my pitfalls in learning to quit was that I would get overly discouraged and cash it all in when I had a slip, instead of realizing that a little slip can be a last slip, if we don't over-react to it.

 

Here's some flowers for your fresh lease on life! :flowers:


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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Hi Sarah

 

You're doing great...and when it makes you feel sick like that, you'll be less likely to slip again...been there, done that too! I quit 21 years ago. Won't be long now and you'll think it stinks too, funny how we never notice that when we are smoking but really notice it when we quit. Keep up that strong attitude about quitting and you'll do just that, after all, you are already half way there! :VeryHappy:


Sending good wishes your way!

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