Help Yourself, Part 1
Tips for living with Cushing's - before, during and after treatment. Please feel free to add your own tips here!
Cushing’s disease may sometimes make you feel that your life is out of your control. But there are some general things you can do to help take back control.
For specific tips such as Getting Medical Attention for an Adrenal Crisis or how to make an Emergency Kit, please see Helpful Hints
- 1 Find the right doctor
- 2 Move forward with the course of action that is recommended by your doctor
- 3 Talk to your doctor about symptom management
- 4 Always put yourself first
- 5 Tips That Can Help You Minimize The Impact Of Cushing's Disease On Your Life
- 6 Think of the things that give you pleasure and be sure to focus on them.
- 7 Take action to regain a sense of control
- 8 Be patient with yourself and others
- 9 Learn all you can about Cushing’s disease
- 10 Join a support group for people with Cushing’s disease
- 11 Pay it Forward
Find the right doctor
It may be challenging to find the right doctors who can help create a comprehensive action plan for your Cushing’s disease. A primary care doctor may first identify the symptoms and physical features of Cushing’s syndrome—especially if you are aware of the symptoms that can be caused by excess cortisol levels and bring them to the doctor’s attention. Next, you will be thoroughly evaluated by an endocrinologist, a doctor who specializes in hormone disorders. Some endocrinologists work with patients with your medical condition more often than others, so they may be better able to help you. It is likely that the endocrinologist will refer you to a highly specialized center for additional procedures (more information about the diagnosis of Cushing’s disease can be found here). You should feel comfortable asking your doctors or other healthcare professionals any questions you have about your condition because this is an important way for you to do something about your disease.
- Ask your medical staff lots of questions. If you don't understand something, ask for clarification, and if you still don't understand, ask again. The doctor or nurse might be visibly annoyed, but that shouldn't stop you. Remember, your health depends on your ability to comprehend what the doctor is telling you.
- Take a written list of questions. You want to be sure you cover everything that you can.
- Take another person with you, or record the conversation. When you get home, you might forget what the doctor said.
- Don't worry whether your doctor likes you or not. If you hesitate to do anything that might upset the doctor, such as asking lots of questions or refusing to accept something s/he has said, you're putting your health at risk. While it's natural to want to be liked, your health comes first and your popularity second.
- Keep records of all your lab results, scans and photos. Find "before" pictures, maybe on your drivers license to show how you looked before Cushing's. Take your records to your appointments.
- Remember that this is a business transaction. You're paying the doctor for a service; you're not in a popularity contest. Of course, you should be respectful of the doctor, just as you're respectful to a waitress or your car mechanic, but you don't owe it to your doctor to be the perfect patient. This is YOUR life.
For doctors who have helped other Cushing's patients, please see Helpful Doctors
Move forward with the course of action that is recommended by your doctor
Your doctor will recommend an appropriate plan of action after you are diagnosed with Cushing’s disease. Following through with this action plan and visiting your doctor regularly are the most important ways to get control over Cushing’s disease.
Talk to your doctor about symptom management
It can take several months or sometimes longer before you notice the beneficial effects on your Cushing's disease. In the mean time, be sure to ask your doctor about medicines you can take and other things you can do to relieve symptoms.
Always put yourself first
The most important thing you can do is to make sure that you put yourself first. It’s not easy, but keep Cushing’s disease from changing who you are by remembering that it causes an imbalance in your body chemistry.
Tips That Can Help You Minimize The Impact Of Cushing's Disease On Your Life
Write a list of things or situations that have become upsetting since you have had Cushing's disease
- Think of ways to limit the effect of each thing or situation in your life
- Decide which of these you can learn to deal with and which should be avoided
Think of the things that give you pleasure and be sure to focus on them.
- Make time in your life to enjoy these things
- Try to find ways of incorporating them into other situations
Take action to regain a sense of control
- Taking care of your body leads to physical benefits and helps empower you to feel that you can do something about your situation
- Exercising or taking up a physical activity can promote weight loss and cardiovascular health, and can become a social outlet when done with a group
- Eating healthy and taking certain vitamin supplements can help prevent some complications
- Learn as much as you can about Cushing's disease to help you feel like you are in a better position to make informed decisions
Be patient with yourself and others
- You don't have to let Cushing's disease take over your life, but you have to remember that it affects you
- Try not to get down on yourself and let others know when you could use an emotional boost
- Let people know how Cushing's disease affects you physically and emotionally so that they can better understand what you are going through
Learn all you can about Cushing’s disease
Although it is an uncommon condition, there is a lot of information about Cushing’s disease on the Internet (such as this Web site) and from other sources. By finding out as much as you can about these conditions, you will be a well-informed patient who can partner with your doctor to help get control.
In addition to this CushieWiki also check out Cushie.info and other sites in the Cushing's Help family.
Join a support group for people with Cushing’s disease
There are support groups that are dedicated to helping people with Cushing’s disease. Many of the people in these groups have or had Cushing’s, or have been a caregiver for a loved one with Cushing’s, and they can provide valuable insights and encouragement about living with this condition.
Pay it Forward
- Join the message boards! We've been through it all, already. http://cushings.invisionzone.com/index.php
- Check out the blogs of other Cushies: http://cushie-blogger.blogspot.com/
- Read the bios of people who have the same diagnosis (or none yet) as you have: http://www.cushings-help.com/toc.htm
- Subscribe to the newsletters to have the latest news delivered to your inbox: Newsletters
- Read and contribute to the CushieWiki: http://www.cushings-info.com/index.php?title=Main_Page
- Listen to the podcasts. Consider being interviewed for one yourself. Podcasts on the web. Podcasts on iTunes
- Join one of our Facebook groups: The Cushing's Help Cause Cushing's Help and Support Group the Cushings Help Organization, Inc.
- Attend local meetings and national conferences where available: " Meetings / Conferences
- If you've had successful surgery, stick around to offer hope to those who come after. Far too many cured Cushies leave, and present an unbalanced look of life after Cushing's.