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CarolCNZ

Kia Ora from New Zealand

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Kia Ora from New Zealand

 

I am new to the forum ... I am 17 years in the scleroderma journey and managing well -- only scleroderma liver (PBC) and percarditis, digestion and Raynaud's to contend with (all managed with medication).

 

I live in New Zealand, teach secondary school full time -- so I haven't let scleroderma change my life!! I wrote my story in the first edition of Scleroderma Voices when I was living in Melbourne. I can't tell you how many times I have used this website to help get me through -- in fact last November I had aspirated into my airway -- due to aesophagus problems, I knew what had happened -- two days later high temperature, trouble breathing, I knew I had aspiration pneumonia... and after going to the sclero.org website I knew I needed to get this followed up. Well I had double pneumonia and was in hospital with blood sats in low 80s for two weeks... if I hadn't had some knowledge, I would have thought this was an ordinary chest infection, which asipiration pneumonia certainly is not, and maybe let it go for a few days. I have learned with scleroderma to take control -- learn much and listen carefully.

 

Carol from New Zealand

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Hello Carol

 

Welcome to the forum!

 

You post is very determined and inspiring, I particularly like the fact that you have educated yourself and take as much control as you can over your illness. A few days ago I met with some fellow sclerodermians and taking control by education and action was one of the topics we discussed. All were in agreement that it beats sitting back and letting sclero march all over us.

 

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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Hello Carol,

 

It is so great to hear from you! As you can see, I moved your post from the "Welcome" forum to the Main forum so that more people could notice it.


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 Carol!

 

Welcome! Where In New Zealand are you? My son lives in Hastings. I've been there twice in the past year and will be there again in January.

 

I'm really happy to hear you are doing so well for the most part with your scleroderma, but sorry about the recent aspiration. I came very close to that myself, but woke myself up in time to sit up and cough everything up.

 

Nice to hear from you.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Kia Ora Carol!

 

I am encouraged to see your positive approach to not lettiing your long term scleroderma rule your life. I feel the same, but worry sometimes what the future holds, especially when I read posts from people suffering major issues.

 

My husband and I spent a month in New Zealand earlier this year, doing all the exciting things I love to do - and I have diffuse systemic sclerosis and 5 other autoimmune conditions along for the ride! I loved New Zealand, and could easily live there.

 

I hope you are fully recovered from your pneumonia. Nice to hear from you.

 

Debs B

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Carol,

I know I'm a little late chiming in, but I wanted to welcome you to the Sclero Forums! It's great to hear that you are still working and that you haven't let scleroderma change your life. You're an inspiration to us all.

 

I'm sorry that you had to suffer through a bout of aspirated pneumonia. I can't think of anything worse than being sick in the hospital. Being sick at home is bad enough, but in the hospital it's worse! I'm glad that you have recovered, thanks to your own research. I hope you continue to have a very enjoyable, high quality life. Thanks for sharing your story here and in voices!

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Amanda

 

Thanks for your post. I suppose you have had to raise your bed so you are just about sleeping in the stars!! Something I wish I had known before I aspirated was how taking certain medication just before I lie down can reduce the damage from stomach contents if they regurgitate during the night. One of the real problems with aspiration is the burning of the lung tissue from the stomach bile and certain medications can help neutralise that. Just a thought for you. (My fabulous general practitioner who knows so much about scleroderma suggested this).

 

All the best and I would love to keep in touch.

 

Carol

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Hello Carol

 

I am a recent addition to the sclero gastro club and thankfully medication is controlling my symptoms so far. Your doctor's tip about taking medication that neutralises acid to try and lessen the burn should there be complications is an excellent one. :)

 

Thank you for sharing and 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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Hey Pamela wouldn't that have been totally weird if Carol would have taught elementary school and had one of your grandkids as a student. Now that would have been to sweet. I am glad you are up to traveling and seeing your grandkids so often. You see yours more than I do. Mine are only about 14 hours away. It is horrible having ones family members so far away. It does take getting use to. Carol,welcome to our wonderful family. We grow in numbers, strength and knowledge each and every day. You will find one wonderfully diverse family here. We truly grow closer to each other as each day comes and goes.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hi Carol,

 

Thank you for posting. I am so glad that you came through your pneumonia, due to your awareness of how serious it was.

 

It is so wonderful to hear that the information shared here was helpful for you!

 

I hope that you are doing well as can be.


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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