Coping, support and living with a chronic autoimmune disease can make you wonder at times whether you’re up to the challenge.

To help you cope, try supplementing your medical care with the following suggestions:

First and foremost, know your illness well.
Read all that you can about your disease.
My autoimmune illness for example: EGPA

Churg-Strauss Syndrome-renamed recently to me more medically correct; EGPA, Eosinophilic Granulomatosis with Polyangiitis, formerly known as Churg-Strauss Syndrome, which includes: Vasculitis, Eosinophilia, Asthma and Allergies.

 

Know, as well, other autoimmune disorders that may be affecting you or likely will affect you; many autoimmune issues go hand in hand.
Mine for example: Raynaud’s Phenomenon, Rheumatoid Arthritis, Sjogren’s, Psoriasis, IBS, and annoyingly, a few others.

You may also deal with other impacts of inflammatory responses in the body in general, joint and muscle pain, eye pain and vision issues, skin and scalp issues, hearing and other inner ear issues.
Know the good, the bad and the ugly of the life-saving medicine prednisone (a synthetic drug similar to cortisone, used to relieve rheumatic and allergic conditions, including inflammation).
Talk to other people who have similar conditions; join a support group; facebook has many. Don’t be afraid to ask your doctor any questions that you may have concerning your illness, diagnosis or treatment plan.

Be a part of your medical team.
Consider yourself, your doctor, and any other medical experts involved as a united front or team in the fight against your disease. Following the treatment plan you agreed to is vital. Keep your doctor updated on any new signs or symptoms you may experience. Don’t be afraid to get second or third opinions. Seek out top experts at major clinics and or hospitals in the United States (or abroad): Cleveland Clinic in Cleveland, Ohio as well as other locations, National Jewish Health in Denver, Colorado, Johns Hopkins in Baltimore, Maryland or other places.

Know and assert your limits.
Learn to say (no) effectively, and ask for help when you need it. This is something that is often easier said than done, but if you can get help, try to do so when possible.

Seriously…Rest when you’re tired. Don’t wait until you’re exhausted. This will only set you back further as your body tries to recuperate. Learning to pace yourself can help you maintain a consistent level of energy, accomplish just as much and feel better emotionally. Again, oftentimes, this is more easily said than done. You know your situation best. I know from being stubborn and not wanting to appear weak, that I often refuse to even admit I feel unwell. Don’t be like me,  it will gradually wear you down and put you at risk of getting sicker.

 Remember that your autoimmune illness is an invisible illness. People in general just do not have the empathy or understanding of the heavy fatigue with which you may be suffering.
You are likely to hear from some people that you don’t “look sick”. Thank them, and try not to be insulted or hurt. They don’t know why you are tired or in pain; making it very hard for them to be empathetic.

Acknowledge your emotions.
Denial, anger and frustration are normal feelings when you must deal with an illness. Things don’t seem normal or fair, and very likely seem out of your control. Feelings of fear and isolation are common, so stay close to your family and friends in the most effective way that  you can.
Try to maintain your daily routine as best you can, and don’t neglect doing those things that you enjoy. Make time for YOU. Many people find support groups to be a helpful resource. A therapist can also be an amazing way to support yourself emotionally.

Mostly, try hard not to be too frustrated with yourself. It takes a good long while to come to terms with your new way of life if this is a new diagnosis. Be ready for ups and downs. If you have caring and helpful support, seek their assistants. 

Best wishes, always,

Dawn 

https://www.nationaljewish.org/about/news/press-releases/2017/mepolizumab-helps-patients-with-refractory-churg-strauss-syndrome

 

Michael E. Wechsler, MD, with a patient at National Jewish Health.

“Mepolizumab offers an important advance that will improve the lives of Churg-Strauss patients,” said Michael Wechsler, MD, first author on the study and professor of medicine at National Jewish Health in Denver, CO.

*My Pulmonologist (above)

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