Re: Books

[Guest guest]

My osn moved out in Sept and even though he's still "local" we definately see alot less of him. It does make it more enjoyable when we do get together-- and there isn't that 25yo moodiness around us, so and I are getting along much better.

These are hard transitions-- and to have kids move out of state must be so much more challenging. When I was having to fly from Sacramento to LA every 6 wks a couple of years back-- I saw so many people in wheelchairs, on scooters, taking advantage of flying to get where they were going. They would be pre-boarded-- then the attendant would take the chair into the cargo hold-- and when we landed, everyone else got off the plane, and then they brought up the chairs, etc-- and transferred the person back into their chair-- and then were able to take them via manlifts or cargo exits and it worked out well.

They now have a portable oxygen concentrator that can be used in planes instead of the compressed gas cylinders, so that isn't as much an issue as it was a couple years back.

I know the incontinence issues are a biggie-- and a nuisance.. I had a dear friend that carried "extra supplies" in a second handbag where ever she went. She used to love to hang it on the back of the chair when she went to the local casino-- in hopes that someone one steal it-- and realize later that all they'd gotten was a bag of Depends. she was 98 yo-- and such a hoot!

One thing that we've found when we travel is that we do trips in sections-- so that we aren't driving too long in a day. If we're going to stay at a motel along the way, and I know where we're going to stop, I can call my oxygen supplier and they will have a concentrator at the location-- so I don't have to drag that along. I take my CPAP with me-- hand carry it on board( if you're flying) and I can also request extra oxygen cylinders be left if I need refills. I can leave my empties at the motel, and the company comes and picks up the concentrator and any empty tanks.

If we stop at the local eateries (Mcs, Burger King, etc) along the way- we know we're going to have a clean restroom.

One of the greatest inventions with computers is the little video cameras where you can have "live" online chats with your family-- face to face! They're inexpensive and easy to use.

Think of it as a new chapter -- and trust that it will work out.

Most sincerely,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Sunday, December 21, 2008 6:16:47 AMSubject: Books

Hi sarc friends, Merry Christmas! Is anyone dealing with a family member moving away? My daughter and her family will be moving to Florida on Jan 1. My husband and I were so disturbed at first because this daughter has always helped us out. Also our 4and 1/2 yr old grandaughter Raina has been my side-kick so not feeling well makes my emotional harder to control. Oh well everybodies life must go on my other daughter and family life in land and so I will have a lot of traveling to do even though it will be difficult, I'll handle the pain, but incontinence is such a worry especially in an airport and than traveling with my electric cart?????? My husband want to drive less worry for both of us! I have a bed in my van outlets for my electric blanket and a porta potty I am just concerned about getting sick on the road? Actually a road trip would certainly be getting away hopefully for a month? enough rambling any suggestions anyone? Your sarc friend

Anne

[Guest guest]

I took the train from Wisconsin Dells to almost Canada in North Dakota. It was a blast. The people on the train were so wonderful. You had a small car with about 6 other people in it. A bathroom right there was all set for handicapped. They helped you on the train and again off. I was able to keep my wheel chair with me because of the room in this car. When we drive,, which I prefer, we make a lot of stops. Fast food places are good but so are gas/convient shops. I use a medium back pack when I travel. I put my needs in there and hang it on the back of my chair. Jim pushes me (which I don't really need but it makes him happy) so he is in the way of anyone trying to to anything. I don't want to believe anyone would steel the bag off of someone in a wheelchair. I guess I am a bit trusting. Don't be afraid of travel you deserve it now. I love to travel. My mom lives in upper WI so that is a haul for me. My kids moved out right away, my request, lol. They live about one and a half hours away from me. That is traveling too.

This spring we are taking the AMTRAX through the Canadian Rockies. It is a 4 week trip at our leisure. I am looking forward to that.

There are people who are more than happy to help you if you need it. So plan your trip and enjoy.

God Bless you and safe traveling. And the emptiness gets easier. Epically with the computer and a camera and microphone.

Jackie

Books

Hi sarc friends, Merry Christmas! Is anyone dealing with a family member moving away? My daughter and her family will be moving to Florida on Jan 1. My husband and I were so disturbed at first because this daughter has always helped us out. Also our 4and 1/2 yr old grandaughter Raina has been my side-kick so not feeling well makes my emotional harder to control. Oh well everybodies life must go on my other daughter and family life in land and so I will have a lot of traveling to do even though it will be difficult, I'll handle the pain, but incontinence is such a worry especially in an airport and than traveling with my electric cart?????? My husband want to drive less worry for both of us! I have a bed in my van outlets for my electric blanket and a porta potty I am just concerned about getting sick on the road? Actually a road trip would certainly be getting away hopefully for a month? enough rambling any suggestions anyone? Your sarc friend Anne

[Guest guest]

Wow Jackie, that sounds like fun, I just hate the cold, so wonder if that would be an issue? I always find people helpful when I use my wheelchair, my Jim always pushes me too, but sometimes he forgets and walks away, lol

so I'm glad I can get around without him too. Walking is so slow and I can't go very far, my legs just stop working, even short distance will take a toll on me, and I will be in pain if I push it! However I just want to add that we went on a Cruise for our 25th anniversary, and the first day I tried to

get around with just my cane, boy did I pay for pushing me, we used the wheel chair after that, and everyone was wonderful, in the dining room, my waiter would come and take the pushing away from Jim, People are real helpful. so like Jackie said don't be afraid to travel!!

Marla

I took the train from Wisconsin Dells to almost Canada in North Dakota. It was a blast. The people on the train were so wonderful. You had a small car with about 6 other people in it. A bathroom right there was all set for handicapped. They helped you on the train and again off. I was able to keep my wheel chair with me because of the room in this car. When we drive,, which I prefer, we make a lot of stops. Fast food places are good but so are gas/convient shops. I use a medium back pack when I travel. I put my needs in there and hang it on the back of my chair. Jim pushes me (which I don't really need but it makes him happy) so he is in the way of anyone trying to to anything. I don't want to believe anyone would steel the bag off of someone in a wheelchair. I guess I am a bit trusting. Don't be afraid of travel you deserve it now. I love to travel. My mom lives in upper WI so that is a haul for me. My kids moved out right away, my request, lol. They live about one and a half hours away from me. That is traveling too.

This spring we are taking the AMTRAX through the Canadian Rockies. It is a 4 week trip at our leisure. I am looking forward to that.

There are people who are more than happy to help you if you need it. So plan your trip and enjoy.

God Bless you and safe traveling. And the emptiness gets easier. Epically with the computer and a camera and microphone.

Jackie

Books

Hi sarc friends, Merry Christmas! Is anyone dealing with a family member moving away? My daughter and her family will be moving to Florida on Jan 1. My husband and I were so disturbed at first because this daughter has always helped us out. Also our 4and 1/2 yr old grandaughter Raina has been my side-kick so not feeling well makes my emotional harder to control. Oh well everybodies life must go on my other daughter and family life in land and so I will have a lot of traveling to do even though it will be difficult, I'll handle the pain, but incontinence is such a worry especially in an airport and than traveling with my electric cart?????? My husband want to drive less worry for both of us! I have a bed in my van outlets for my electric blanket and a porta potty I am just concerned about getting sick on the road? Actually a road trip would certainly be getting away hopefully for a month? enough rambling any suggestions anyone? Your sarc friend Anne

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

May the Lord bless you and keep you,May the Lord make his face to shine uponYou,And be gracious to you;May the Lord lift up his favor upon you and give you his peace.(Numbers 6:24-26)

[Guest guest]

never heard of that book, can you post a link to it?With all the info on here, on the net, ad in the book I think you're off to a great start. You're very well prepared and alot better off than I was when I started.-UC - 1+ yearsSCD - 8 months 100% strict and 4 months restricted diet.Asacol - 12 pills a day Prednisone 40mg entocort With vit E mixed inBack to intro/stage 1 for now.To: BTVC-SCD From: willowcreek09@...Date: Sun, 28 Mar 2010 20:42:28 +0000Subject: books

I have read the book BTVC and have read the websites associated with that book. Should I also purchase the book SCD Lifestyle: Surviving to Thriving? I want to get started right.

Hotmail: Trusted email with Microsoft’s powerful SPAM protection. Sign up now.

[Guest guest]

I just had the Breaking the Vicious Cycle book in 2005 when I started.  Will have to wait on Marilyn or another moderator's review on the book you linked.

 

The website (the only legal one with the list of illegals and Elaine's picture) is the most up to date source as far as legal/illegal ingredients.

 

Debbie 40 cd

[Guest guest]

At 03:42 PM 3/28/2010, you wrote:

I have read the book BTVC and

have read the websites associated with that book. Should I also purchase

the book SCD Lifestyle: Surviving to Thriving? I want to get started

right.

If it's the book I'm thinking of, it does not have anything in it that

you can't get from this list.

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

Babette the Foundling Beagle