Tips for patients with Vasculitis

Each case of Vasculitis is different – Get to know your disease. Educate yourself, the more knowledge you have, the more you will be able to participate in the management of your disease. Be your own advocate – you know your body; don’t be afraid to speak up. Vasculitis is rare and not as well known as it should be, be persistent ask questions.

Build an honest and open relationship with your doctor. It takes a team to get you on the right track and that includes you. Your doctor is only human – they need to understand that we are too complex for one doctor to be able to understand, support and handle it all. Bring in the cavalry – specialists are called that for a reason – they deal with specifics. If you are not satisfied with an answer, demand a second opinion. It’s your life after all!

Do not play with medications! Learn about them, the purpose for taking them and the side effects that you might encounter. Discuss this with your doctor and pharmacist.

Be honest with yourself and others. Pace yourself, “Fine” is not always your best answer. It’s ok to say you’re having an “Off” day.

Ask for help. Call in the Calvary when necessary. Have people in place to help with child care, cleaning, groceries etc. It’s ok to ask for help, it also makes others feel like they can finally do something for you. Let them.

It is normal to grieve the loss of the “old” self. Learn to come to terms with your disease and not deny it. Try and find something that has been positive about the whole thing.

Give yourself permission to be depressed for short periods of times. Its ok, you are going through a big adjustment. Talk to someone like a therapist or close friend. Find your sense of humor and develop a positive attitude, and then get on with living!

Don’t lie around. Make sure you get out of bed and dressed each day even if you only make it to the couch. Try to do your hair and put on some make-up, it gives you a better sense of well being. Move around even if you hurt. Try getting up and walking around may help relieve your pain.

Pamper yourself! This is your chance to let others take care of you. Let them and don’t feel bad about it. Treat yourself to a massage or have someone give you one.

Make lifestyle changes. Eat balanced, low fat meals and get regular exercise. Try yoga or meditation to ease muscle tension. Get enough sleep, this will help your body rejuvenate itself. Reduce your stress and anxiety because this may also cause fatigue.

Keep a journal of symptoms, medication dosages and their side effects, plus your feelings. It will come in handy each time you visit your doctor.

Plan a night out. Plan a friend’s night out to get your mind off of your illness.

Seek a support group. It is great to talk to others who are going through similar experiences.

And remember…You are not alone!