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tngrits

Sorry I keep disappearing - Update

11 posts in this topic

Hi everyone! I hope you are all doing okay and not having too many problems. Bless you all for being here for all who find this site.

 

Last time I think I was trying to get my gastro problems checked out. Well, I did and wasn't the best news. It is no longer just the esophagus but the entire gastro system. After over 15 years scleroderma has raised its head and started progressing. I do consider myself lucky it has taken this long. I am now on some pills that have helped the running to the bathroom. I have bile coming up into my esophagus also but the pills help.

 

I would have been on here sooner but had a big fight with my bathtub and the bathtub won (of course). By the time I stopped falling I was on my tummy and my right shoulder was still on top of the tub. Big Ouch!!!! I laid there for an hour and a half waiting for someone to come. Finally a friend called and figured out something had to be wrong. I have now gone through two surgeries for my shoulder. It dislocated and a bone broke into a lot of tiny pieces. It has been five weeks and he said I may be half through on wearing the brace. It still has not attached itself so having to be very careful.

 

I have been losing my balance a lot and falling so I have made a major decision in my life. I am only 56 but have no family here and the sitting in the tub that long really scared me. I just got back from Virginia and have decided to move there. My daughter is also moving there with her family so we'll be close. I am just old enough to go into an independent living facility. It is not what I thought I would be doing at this time in my life but gonna enjoy as much as possible. It is a very nice place and they take of daily chores. There are so many things to do there and places to see. My apartment will have two bedrooms so that is nice.

 

I have worked very hard all my life and even when married had everything to do myself cause my husband worked away from home half the time. It is time for me to get rid of all the stress and try to get myself in better physical condition. So, if anyone knows some good doctors in east VA please email me.

Hope everyone has a wonderful Fourth of July also.

Linda

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Hello Linda, from sunny England!! Happy 4th July :happy1-by-lisa-volz:

 

Your decision to move won't have been an easy one and very well done. You've been very brave and sensible, I am glad your daughter is going to be near you.

 

My dearest wish is that you'll be very happy and settled there and that your shoulder is fully "mended" soon! I hope life will be good for you, no more falling about in bath tubs, okay?!

 

All the best. Keep posting and let us all know how it all goes, won't you?

 

Take care,

Lynn x :happy-day: :flowers:

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Linda,

I think you are making a sensible decision. Many wait too long before admitting they need assistance. I hope you will be happy in your new home and that you and your daughter will spend many moments together. I am so sorry to hear of the progression of scleroderma. This disease is just full of surprises. May your shoulder heal quickly. It must have been very scary to be alone and unable to move from the tub. At your new home you will have people taking care of you for a change. Best wishes!

 

miocean


ISN Artist

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Hey Linda,

It's so good to hear from you. Sorry that you have been having so many problems with the GI and falling and shoulder. Thank goodness for our friends and family! I agree with Lynn that moving is not an easy decision to make, but it does sound like for you, it is a very good decision. If I didn't have the hubby to help me out, I'm sure I would be making a similar decision.

 

I'm sure it will all work out for the best. Just being closer to your daughter and her family sounds pretty exciting! Let us know how the move goes. Be sure to get plenty of help!


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 Linda

 

I agree too, good decision for you and no doubt, you will love being close to your daughter/family.

 

I'm sad to hear that things have been changing for you but glad to hear that you won't be alone anymore and that you will have help along with the added comfort of your daughter nearby. What a nasty fall, no wonder it scared you...hope the pain for that is under control by now.

 

No matter where you move, you'll still be close to us too (in cyber space of course) since we are always just a keystroke away.

 

Keep us updated when you can/get settled in your new 2 bedroom pad and be sure to get loads of that site seeing in too, it's always so much fun to have that type of new adventure to look forward to.

 

Good luck with the move.


Sending good wishes your way!

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Hi Linda,

 

Oh my goodness, that battle with the bathtub sounds frightening in the extreme. I bet your new place will have good safety rails in the bathroom (everybody should have them and ours are going in when the remodel is done this autumn) and maybe even a panic button. I think you are making absolutely the right decision in moving. Good for you for doing it.

 

I'm sorry your gastrointestinal issues are getting worse. I hope they'll be able to find some relief for you. It must be a disappointment after 15 good years~

 

We don't have any specialists listed in Virginia, but you'll be relatively close to Washington, DC, Maryland, and the centers in Philadelphia and there are lots of specialists in those areas. What I think is even nicer is that you can take the train to get there and then taxi, so you wouldn't have to hassle with driving, etc. It would be a wonderful knitting opportunity in my book to take Amtrak everywhere. ;)

 

Warm hugs (but being very careful of your shoulder!) and absolutely the very best wishes,


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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Dear Linda,

 

Congrats to you on your upcoming move.

 

I think you will find it absolutely delightful to move into an independent living facility. Most of the time, people who do that have only one regret -- which is, that they didn't do it earlier!

 

You will have so many new friends to meet, and things to do; it will be so much easier than living all alone. And I am sure it will make it all that much easier to deal with scleroderma, all the way around. Great for you to have the idea and the courage to make such a positive change for yourself.

 

Here are some congratulatory balloons for you. :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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Thank you all so much for the positive feedback. I need to get on here more. You all are a big help when we are down and out and unsure if we are doing the right thing. It will be good knowing all I have to do is push a button I will be wearing and help will come running. I plan to make lots of friends and do plenty to keep me from getting depressed. I will have 3 of my grandchildren close by so that is a big help too. I saw my rheumatologist today and he thought this was a smart thing to do also. Bless every one of you! Hugs!!!

Linda

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Hello Linda

 

Your attitude towards the fall and the move is marvellous! Do keep us updated about the move in fact about anything!

 

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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It's been on the back of my mind too. I hope you will be posting your adventures in assisted living- I for one could use the information.

I wish you every success with your move.

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Amanda - you are a dream! Always so upbeat. Seeing you post on my topic means I will be smiling after reading it.

 

enjoytheride - There is a difference between "independent living" and "assisted living". I am going into independent living right now because I can pretty much take care of my daily needs without assistance. If I do get sick they will assist me with bathing, etc. There is a registered nurse on duty at all timest!. Can not wait!!!!!

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