Sarah_Smith

Some questions

36 posts in this topic

Thanks for the link ^_^ . Today makes 1 week and 5 days without smoking...It has been kickin my butt, but I am getting there, it keeps getting easier with each day, and I have been using the gum for extra help, down to 2 pieces a day, so I am hoping that by the middle of July, I should have it kicked for good. I called my RA doctor the other day to ask him some questions about my charts and blood work from 2 years ago, and even though they had always focused on my RA, (thats all I thought I had for all these years), I actually have something called mixed connective tissue disorder, being a cocktail of RA, Sclero and Sjogrens. But he said that my crippled hands are from the RA, I have no tight, shiny skin anywhere, but I do have white patches on my knees and elbows and some on my hands, but they are not hard or shiny, so I don't know if that is from the Sclero or not. The only signs I have of it are my calcinosis, my Raynaud's and some tiny red spots on the palms of my hands, so when I go into him in July I am about to tell that man that he needs to plan on spending a lot of time in with me, because I have about 2 pages of questions for him to answer. :D

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Hi Sarah,

 

Major congratulations to you for every passing second of now breathing only fresh, healthy, invigorating clean air!! :jump-for-joy:

 

Since you are in high hopes of having a good sit down with your rheumatologist, an idea to consider (if you already haven't) is to check with their front desk to see how long your appointment is scheduled for. Many doctors (even rheumatologists) work on 10 or 15 minute segments for appointments, and particularly for usual follow-up appointments if they don't expect many new things to crop up. Longer appointment times are usually available upon request, but that's advance request so it doesn't throw their entire day off schedule.

 

My doctors are great at working with me for longer appointments, advising me how to schedule longer ones and even suggesting the best time frames for them. Often they prefer the end of the day for a long appointment so that I am the last patient. And I go with a list of priorities, so that if there isn't sufficient scheduled time to cover something, I know that at least my most important question(s) is answered, and I can make another appointment for the rest.

 

Sometimes we might think our doctors have a huffy or brisk attitude, where in actuality they are just trying to not do an hour long sit down when only a 10 minute appointment was scheduled. Plus, I have to say, I am shocked that most clinics give start times for appointments, but don't let us know the expected end time of it! So it really puts the burden on us to ask.

 

Good luck at your next -- long! -- appointment. :VeryHappy:


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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We are so proud of you Sarah for quitting smoking! Hang in there with it hon...YOU CAN DO IT! :emoticons-yes:

Catty

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Sarah, is this your two week mark for breathing fresh, clean air? If so, I'm jumping for joy for you! :jump-for-joy:

 

One thing I really wish someone had told me, when I was quitting over and over again, was that the urges to smoke really and truly do go away. Somewhere along the line, they become fewer and fewer, less and less intense, and then it is like they just evaporate. But giving in to the sneaky, nefarious idea of "just one puff" or "just one cigarette" brings those urges back full force, enough to knock us on our behind and get us back into smoking full-time in a matter of hours.

 

Whereas, somehow, I thought (for years, when I was repeatedly quitting but without long term success) that just quelling the urge with a little puff would help get me over the hump. It was actually each time I ignored the urge that it got weaker and weaker and weaker. I can honestly say that I've never had a serious smoking temptation now in over 20 years, which is hard to believe after having spent 20 years firmly addicted and just barely getting by, from one smoke to the next, even chain smoking on bad days.

 

You'll be freer and freer of it, literally, with each passing day. You go, girl! :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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:D Thank you guys for the support. Shelley, I do believe today makes 2 weeks and 1 day of no smoking.

 

I still get the urge to smoke here and there, especially after eating and when my hubby smokes. He has limited his smoking around me, though. He works all day, and when he gets home, he will have one after dinner and one before bed, and any others he will go outside for, so he is trying to help, but he doesn't know that I plan on starting on him about quitting here pretty soon. :)

 

I still need the gum to help sometimes, like when I'm stressed or after eating, but I am only using 2 to 3 pieces a day, and the nurse at my doctors office said she would rather see me chew the gum when I need a "fix", instead of picking up smoking again, but she has faith that over the next few weeks, I won't even need the gum any more. I'm pretty proud of myself, this makes the 7th time I have tried to quit, I always failed before. I do beleive I am gonna make it this time. I know that since I have quit, the house has become a whole lot cleaner, because usually when I get an urge, I find something to do to get my mind off of it, and that is usually cleaning. We are throwing a big 4th of July party at the house tomorrow, so I am going to be busy all day with cooking and cleaning and getting everything ready, so I am going to try to go all day without using the gum tomorrow, so wish me luck. B)

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Oh Sarah, you're going to try to through a big party and not use any gum on the same day? I think not! If anything allow yourself to use more of it. It is a piece of cake to ease off the gum but not if you try it too soon. Don't worry, it is a natural leveling off, and you can discuss it with your doctor if you feel you are relying on it too heavily -- a few weeks from now.

 

Meantime, relax, enjoy the party, and don't hesitate to use all the help you can during this spell. The first three weeks are the most important in establishing any new habit. You can do it, just don't try to be superwoman and overdo it, please, for my sake, okay?


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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Wooooeeee! Way to go, Sarah! That's absolutely wonderful. Many, many congratulations on your achievement! :emoticons-yes:


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 - As a 40-year smoker who tried to quit at least 20 times over a 30-year period, let me add my congratulations to you! Quitting is without a doubt one of the most difficult things you will ever do, and its something that a non-smoker (or a "recreational" as opposed to "addicted" smoker) can never come close to comprehending. Chew as much of the gum as you want to - its not going to hurt you. I did the gum along with anti-depressants and the patches for three months, just to be sure I was completely past the point where I'd give in and go back to smoking. I'm now 8 years as a non-smoker, and I truly never crave it - I never thought I'd really not remember what smoking was like, but I honestly don't! So hang in there. The end result is definitely worth it. Oh, and tell your husband to smoke outside. At least until the smell of cigarettes becomes offensive as opposed to enticing! ;)


Sharon T.

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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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