Your Medical Care Management

When it comes to navigating the healthcare system and working with various medical professionals, keeping one’s medical information well-organized and easily accessible may be time-consuming.

To help you organize, track and catalogue your medical information successfully, we invite you to download the Healthcare Management Binder.

Please note that the material in the Healthcare Management Binder is presented for general information only. It is not intended to substitute for informed medical advice. The binder is a resource that should be used in conjunction with one’s healthcare provider(s).

We sincerely hope that this binder serves as an easy and efficient tool in managing your overall healthcare experience.

To learn more about the most common complications of scleroderma, we encourage you to familiarize yourself with the warning signs that you and your loved ones should regularly be watching for. Please refer to the brochure, What is scleroderma?

Prepare for your medical appointment

To clearly articulate your condition to your doctor and avoid forgetting something important during your medical visit, here are some tips that will help you get answers to your questions.

Before your visit

Write down all relevant information about your health and questions you want to ask:

1 Make a list

Make a list, including observations that you have made since your health problem started and describe them accurately:

Symptoms or discomforts experienced;
(fatigue, pain, loss of appetite, insomnia, or any other change in my body…)
At what times do they appear?
(morning, afternoon, evening, night, before/after meals, after exercise or effort, rest…)
For how long did you have these symptoms?
(number of minutes, hours, days or months…)
How often do these symptoms occur?
(at the same time of day, every day, every week, every month, all the time, irregularly…)
What is their intensity?
(light, moderate, unbearable…)
What means and/or drugs have I used to help reduce the discomfort and what results did I achieve?
Is there anything that makes the symptom better?
(resting, standing up after a meal…)
Is there anything that makes the symptom worse?
(bending over, lying down in bed after a meal…)

2 Prepare your questions

Some of the questions you may want to ask include:

Do I understand the disease and its potential complications?
Do I understand the reasons for prescribed tests: What helpful information will they tell the doctor? What are the risks of the tests? How will the results change the future treatment plan?
Do I know if different treatments are available? What are the advantages and disadvantages of each treatment? What can I expect from the treatment?
Do I know everything I need about my medication:
- the name of my medication;
- the symptom this medication should be helping with and how long it takes for the medication to start working;
- how and when to take the medication and what to do if I miss a dose;
- where and how to store the medication;
- the duration of treatment;
- the potential side effects and what to do if they occur;
- its possible interactions with other drugs, foods, alcohol, natural products, etc.;
- the risk of becoming addicted or dependent on the medication.

It is important to make a long enough appointment that provides the opportunity for a thorough and in-depth discussion with your doctor. Remember to bring all your medications, including over-the-counter medications and any supplements you are taking.

Making Healthcare Decisions

With all this information and medical terms, how does one decide on the best course of treatment for them. SPIN has created a worksheet for you to compare options applying a perspective of risks and rewards for you. Maybe this can help you clarify what is possible and make your decision.

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