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laurie906

Helps For Daily Tasks

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As a new sclero with skin involvement, there are a variety of things I am struggling to do. Some of these are at home and some at work. Just wanted to share some changes/purchases I have made and hope of hear from others on how they accomplish difficult tasks.

 

I have Raynaud's and Skin tightening Sclero. I was having trouble with my hands going numb at night. It didn't happen during the day. I have SOLVED this! I need to keep my skin mosturized so each evening I massage with lotion, put on cotton gloves, the use short carpel tunnel braces on both hands. This was VERY uncomfortable in the beginning but my hands no longer go numb at night. I have been wearing them for 3 months. Each month I try to sleep one night without them and have the numbness return so...Will continue for now (I joke with my husband that he now sleeps with the mummy from so many old movies)

 

Since it's been cold, I have a need to keep gloves on always. This also protects my hands from bumps and scrapes. As a result I have trouble opening doors with knobs. I counted, we have 15 doors in my home....so my husband is looking for a bulk purchase and we will be changing those to levered knobs.

 

Since I am having trouble with grip...I really can't cut/chop in the kitchen. Most tools available need you to cut some before you can use them so.. my family holds a "chopping ceremony" in the kitchen each weekend. We chop carrots, onions, break up lettuce, fruit, stew meat, etc. Each going in the ZIPPERED ziploc bag (I have trouble opening/closing the ones that require fingers) and into the fridge they go, already preped. I feel like a chef directing my crew!

 

Well, I think that's a start! What are you all struggling with? Have you a solution?

Laurie B)


Laurie906

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Hi Laurie!

This is a very good thread to have started... thanks!

At the onset of my Scleroderma/Raynauds, I suffered a great deal of pain

as my fingers took on their many changes. I couldn't believe how rapid the process really was :o . Anyway, as time went on, I had to adapt to doing things/finding ways to get things done. Being a self-reliant gal, it'd been somewhat difficult submitting to help from others, when needed... However, once I stopped and thought about it, I realized how good it always made/makes me feel whenever I could/can do something for someone. I also remembered: A friend in need... is a friend indeed!

When I can do for myself, rubber rounds are very helpful when twisting tops off of jars, etc.

I used to be able to scrub pots/pans, but now... I put water in the pot/pan, set it back on the stove and let it "cook" on low heat until a spatula can clean it right up!

 

My fingers have shrunk in length, due to bone reabsorption... I never realized how much I used my finger tips :blink: If I want to point, I really need a pencil for the purpose. Quite some time ago, I "pointed" at something I wanted my hubby to notice... Of course, he looked in the direction where my finger was actually pointing and I looked at him and said, "No Hon, over there!" He responded, "Sweetie, your finger is pointing over there"! We both started laughing :P

It can be frustrating, yet I'm not as sensitive about it as I once was :rolleyes:

BTW, I buy alot of pullovers, tee shirts, learned to tie my shoes with my ring fingers and thumbs.

When we bought our place, my hubby was the one who thought to get lever door openers. (Funny thing about this... he went out our back door yesterday... when he came back in, he said, Now, we've lived here for 3 years... I wonder why I didn't get a lever door handle for this door"? :huh: )lol I asked that we not have knobs on any of our cupboard doors.

 

Looking forward to responses!

Hugs, Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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My wish list includes: (without mentioning brands......)

 

Electric can opener

Wide mouth food processor

Spinning battery powered tub and tile cleaner brush

Food chopper

Remote control car starter

Deep massaging chair pad

Parrafin wax hand bath

Jacuzzi tub

 

 

A personal chef, housekeeper, chauffer and masseuse! :lol:

 

By the way, instead of going to all the trouble and expense of changing all the doorknobs in your house, I have seen gloves with little rubber nobbies on the palms so you can get a grip - just a thought :)


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Hello Susie and Barefut!

 

Thanks so much for responding with great suggestions. This is what I was hoping for. Susie, I like your clothes suggestion. I have had to give up jeans but am working out a new look. Already let my husband know....$$$ may be spent! I find the yoga pants and winter running tights work best for me and even help my legs to look somewhat shaply. Is that to vain? I was starting to look like a bag lady just to keep warm.

 

Barefut, you should try the new can opener that opens cans on the side not the top that is advertised on TV. I found one in my stocking this holiday. I wasn't sure it would work. My 800 number reaction but it does! The batteries sound like they are struggling but we replaced them and discovered that's just the way they sound. There is a magnet in the bottom, it grabs onto the can, you push the button on top and walk away. Be careful though, it says there are no sharp edges but I think it's very sharp. No small children allowed.

 

I am trying to cook more with my slow cooker. So, Susie, I liked your suggestion on how to clean up. I was using PAM spray before cooking. Has anyone tried the new plastic liners I saw advertized? You can line the slow cooker, then pile in the food, cook, then when done eating just pick up the plastic and toss. Sounds easy?!!!

 

Laurie


Laurie906

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Oh yea, I forgot...

 

Slip on shoes !

 

(I make my 4 year old wear velcro shoes so I don't have to tie his either....He's begging me for TIE SHOES MOM!)

 

For me, tying shoes is my most arduous task. My poor four year old will probably never learn to tie shoes because of me and have to wear velcro shoes to college!


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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My greatest invention for improving my daily lifr - my 13 year old son - I call him fingers. I bought cheap intercoms from an electronics store and installed in the upstairs and garage, that way my 13yr old fingers re readily available.

 

I use the good grips tableware as I cannot hold regular silverware.

I use an electronic toothbrush that has a large handle easy to hold base

My mother made me mitts in a simialr shape of oven mitts to keep my hands warms and safe outdoors - my fingers have curled so much that normal gloves just don't cut it.

Cur styrofoam - really thick to fit around washing machine knobs so I canturn.

Purchased corel unbreakable plates, because they are lighter than my pottery one to handle.

Down comforter with fluffy pillows to make sleeping easy and I only need one blanket and can "grasp" better. Fluffy pillows because I deserve it!

Installed soap and shampoo dispensers similair to ones found in athletic clubs

My husband built ip our couch by adding 4inch blocks to the legs - wow that one was great - I felt like a regular person getting up easily and with grace again!

I could go on forever!!!!!

 

Thanks for starting this thread!

 

Lori

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Hi everyone,

I do have an automatic car starter and it is a must have here in New England! It is the best purchase ever.

Last year I received a jar opener, it is a very popular brand name. It can open a variety of size jars. You put the jar on the base and twist the base so it touches the sides of the jar. (This takes no effort and it does not hurt your hands) Next, lower the top to it rests on the jar. Finally hold down the large button and WAHLAH! It twists open you jar for you. It is fantastic and my kids love to use it too!

 

"A personal chef, housekeeper, chauffer and masseuse!" I'd like these too!!!!

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Here is some other things you can do to help you out at home.

1. Use a pencil tip to dial the phone number that are needed.

2. You can have someone nail a finger nail clipper to a board that way you can use the palm of your hand to cut your nails.

3. for lamps that is hard to turn on put a clothes pin on the switch so it will be easier to turn on.

4.loop shoelaces or strips of fabric though your drawer pulls and refrigerator handles to create large soft pull.

5.line your pans with aluminum foil.

6. raised toilet seat 6 inches will make it easier to get on and off.

7. A pair of velcro closures sewn on behind the buttons eliminates the button problem.

8.for your clothes hanging in the closets have the lowered to wear you can reach them.

9. attach key rings to your zipper pulls that are difficult for you.

 

I have more if needed, Sam


Sam

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Hello Everyone,

 

What excellent ideas! Sam, I plan to use the zipper pull suggestion immediately. My daughter says she can make one out of embroidery floss (like a braid) which may be softer, will color match, and I can use on the dress slacks I have. So thanks for the idea.

 

I have been having trouble lately with sorting papers. I seem to have to wear gloves all the time. I have looked for the gloves with texture on the fingers listed above but haven't found them. Did find a box of rubber fingers at the office supply. These come in SIZES so I plan to use a larger one to fit over the glove. Hopefully this will work.


Laurie906

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What good ideas everyone has! Lisa, I think I have the same jar opener that you have and I love it, too! It was my best holiday gift a couple of years ago! By the way, I don’t even twist the base so it touches the sides of the jar. I just put the jar on the stand and press the button on top and it does the rest.

 

I have been intending to get lever-type door knobs, but, in the meantime, I have discovered that the surgical kind of rubber gloves is good for turning a regular door knob. I guess it sort of sticks to the knob and makes it easier to turn.

 

Laurie906, I haven’t seen the gloves with the textured fingers either, but the surgical gloves work great for sorting papers for me. They actually remind me of the little rubber fingers from the office supply.

 

I buy the rubber gloves at one of those warehouse discount places and I keep a box in the kitchen and another box in the bathroom.

 

I always wear them when I’m cleaning anything because cleaning seems to dry out the hands.

 

I hope this thread keeps going for awhile because I am really getting some good ideas.

 

 

Mary in Texas

 

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For an easy and cheap help in turning door knobs, try putting a wide rubber band (broccoli type) around the widest part of the knob. Longer wide rubber bands are also useful when put around jars or other containers (or jar lids) that are difficult to grasp. I use them near the bottom of jars that are almost out of my reach in the kitchen. I'm sure you can buy these rubber bands but mine came from purchases of greens at the farmer's market and other food purchases.

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I've seen large rubberbands at office supply stores or around shoe boxes too.


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Great info!

One thing that I do to control Raynauds outbreaks is two heat up these little cloth bags of rice that a friend gave me and pop each one into my jacket pockets before I go anywhere. I have a 1 1/2 year old and these heated pockets let me really warm up before I quickly buckle a car seat and then pop my hands back in before they even have a chance to go white!. I have a lot of those disposable pocket warmers that last 7 hours...but I feel like its a waste to use them for a quick trip to the market.

 

Stay warm!

Heather

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