Resources

Scleroderma: Basic overview

It is important for you to be able to keep track of your illness and the medications that you are taking. Print the PDF below to record the type of scleroderma that you have and the medications that you are taking. If you are not sure, discuss this with your doctor at your next visit.

My scleroderma

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Print the PDF below to track your medicine usage.

Quick medication overview

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Self-advocacy

These printouts will help you apply self-advocacy in the different environments throughout your day.

Self-advocacy at home

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Self-advocacy at work

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Self-advocacy in healthcare encounters

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Exercise

Exercise log

Use this printout to identify an activity, and track goals and frequencies.

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Paraffin wax treatment

This printout provides instructions for a paraffin wax treatment.

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Range-of-motion exercises: Hands

A quick guide to range-of-motion exercises for the hands.

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Range-of-motion exercises: Legs

A quick guide to range-of-motion exercises for the legs.

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Therapy and scleroderma

Check out these helpful tips when searching for an Occupational or Physical Therapist

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Insurance tip sheet

Tips on verifying coverage for therapy.

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Coping and body Image/appearance

Learning Activity Coping with Body and Physical changes

An exercise to help you adjust to the changes your body may be experiencing

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10 ways to find joy

Use this print out to identify new ways to find joy in your life.

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Fatigue and energy conservation

Develop a support System

Use this printout to record your address, important phone numbers, and activities that occur on a regular basis.

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Creating your to-do list

Creating a To-Do List every week will benefit you by helping to prioritize and organize your tasks, create better time management, conserve your energy, and manage your scleroderma symptoms.

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Learning to ask for help

Asking for help is something that can be extremely challenging for everyone, but it’s necessary for a normal life.

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Tips on asking for help

Asking for help is key to managing your symptoms and to living a full life. Consider these tips.

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Learning to say NO!

Learning to say NO can be a valuable tool for conserving your energy.

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Managing your fatigue and scleroderma symptoms by prioritizing tasks

Take control of prioritizing your tasks and conserving your energy; you will find that when you do this you can better manage your scleroderma symptoms.

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Rate your fatigue

A good way to manage your fatigue is to start to learn more about it.

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Symptoms of fatigue

A list of some of the signs and symptoms that scleroderma patients have experienced with their fatigue.

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Weekly schedule

A printable weekly schedule so you can plan rests.

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My weekly to-do list

Keep track of your tasks and goals with this worksheet.

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55 gentle ways to take care of yourself when you’re busy, busy, busy.

55 gentle ways you can take care of yourself when you’re pressed for time and attention.

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20 tips for a good night’s sleep

Many people have trouble falling asleep or staying asleep, or both. Here are some tips for getting a good night’s sleep.

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Management of Raynaud’s Phenomenon, finger ulcers, calcinosis, and skin involvement

Being prepared: Managing ulcers

This printout gives instructions for taking care of your digital ulcers.

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Raynaud’s travel kit

Use this printout to prepare a travel kit to stay warm or at least to protect your hands when you are out.

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Dysphagia and the digestive tract

Dysphagia and reflux Log

Track patterns with this printout so your doctor can identify possible solutions.

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Activities of daily living

Tools and adaptive gadgets to help with scleroderma

Identify activities you’d like to do more easily and strategize with this printout.

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Activity plan to improve ease in performing daily tasks

Identify activities you’d like to do more easily and strategize with this printout.

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Mouth and teeth care

Activity plan for mouth and teeth care

Get organized with caring for mouth and teeth with this printout.

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Pain management

10 ways to find joy

Use this print out to identify new ways to find joy in your life.

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Happiness derived from within

Create a gratitude journal to keep an on-going list of all the things that make you happy and grateful in your life.

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Generic and trade Names for common antidepressants and anticonvulsants

A list of generic and trade names for common antidepressants and anticonvulsants.

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List of opiate medications

A list of opiate medications, acetaminophen and maximum daily doses

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Warning signs of addiction

Some of the warning signs of addiction to medications

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Medical marijuana

Practical tips for using medical marijuana products

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Emergencies

Monthly blood pressure log

Keep track of your blood pressure with this simple chart

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Tips for families and caregivers

Common caregiver feelings

Here are some feelings you may find yourself experiencing as a caregiver.

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Ways to avoid anger

Some tips on avoiding anger as a caregiver

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Ways to manage your guilt

Some tips on managing guilt as a caregiver

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Tips on managing your feelings of grief

Some tips on managing grief as a caregiver

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Ways to find acceptance

Some tips on finding acceptance as a caregiver

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Caregiver burnout

Signs, symptoms, and prevention of burnout and feelings of being overwhelmed

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Lori’s Testimonial – Full text version

This is the full text version of Lori’s testimonial

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Rhonda’s Testimonial – Full text version

This is the full text version of Rhonda’s testimonial

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Clinical trials

Basic steps for using the Clinicaltrials.gov website

Use this printout for some basic instructions on navigating the Clinicaltrials.gov website

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