Living well with EGPA: The healing process

Living well with EGPA (Eosinophilic Granulomatosis with Polyangiitis )

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The healing process

(EGPA) Eosinophilic Granulomatosis with Polyangiitis is also known as (CSS) Churg Strauss Syndrome

Written by Shawna

Being diagnosed with EGPA brought many things.  Relief because I finally knew what was wrong with me.  Disbelief that such a fit, healthy person could become so very sick so quickly. Fear of an uncertain future.  Resentment at no longer being able to do the things I used to do.

Nine years ago, after I was diagnosed and coming down from the euphoria of extremely high dose steroids, the reality of my disease – and my shattered life – really hit me. The doctors told me that I had done nothing “wrong” to cause the disease. They said that it was not my fault, and short of taking the meds they prescribed, there was nothing I could do that would reduce the impact of the disease on my life. It’s terrible, and we are sorry, but that’s the way it is, they said.

I refused to believe that there was nothing I could do, and poured myself into researching the condition and alternative therapies that might help me. In hindsight, I was frenetic and almost desperate to avoid what I perceived as the progressive horrors of things to come. To broaden the focus of my team of 6 medical specialists, psychologis1t, and family doctor, I began my very active, and completely exhausting search for answers. I read books, talked to anyone I could who had a chronic illness, and was willing to try just about anything. I adopted an anti-inflammatory diet. I visited Traditional Chinese Medicine (TCM) doctors for herbs and acupuncture, osteopaths, massage therapists, naturopaths to address food allergies, sensitivities and an overactive immune system, and yoga teachers for gentle exercise and “new age” spiritual guidance, among others. Some claimed that they could cure me. Some wanted me to stop taking the medication that had saved my life. Some were more realistic and happy to work with me and my core physicians. I was armed to the teeth, ready to fight this disease with everything I had.

Then I came across Dr. Andrew Weil’s book, “Spontaneous Healing”. It changed everything for me. Finding this book at the time that I did enabled me to slow down the constant searching for answers, take a deep breath, and really settle into living well.  Dr. Weil claims that he has witnessed seven characteristics in people who have experienced “spontaneous healing”, where the body heals itself.  (Not cured necessarily, but healed). My interpretation of the characteristics exhibited by people who have experienced “spontaneous healing” are:

1. Did not take “NO” for an answer

2. Actively sought out information, and took charge of their health

3. Sought out other people who had been healed (for support, guidance, and information)

4. Developed a constructive partnership with medical people

5. Made radical changes to their lives (usually lifestyle)

6. In hindsight, see their illness as a gift, because it forced them to change their lives

7. Cultivated an attitude of self-acceptance (of themselves, and who they are.  i.e., “I am not my disease”)

4Being “cured” and being “healed” are two very different things.  My disease is incurable.  But it can be quieted. I truly believe that I can heal.   I will heal in my own way, using the therapies that work best for me. I can live a productive, happy life.

I had already been addressing numbers 2, 3 and 4 with vigor before reading the book.

Number 1 – refusing to take “No” for an answer – was always, and still is, a fundamental part of my personality (like it or not). So that left three more things to work on…

Doctors told me that I did not require any lifestyle changes. Initially I believed them. I exercised, ate well, did not smoke and rarely drank, but I got sick anyway.  No one could definitively explain why.  After much soul-searching, I came to understand that my classic “Type A” personality likely contributed to my illness. I had never worried about my stress levels; my blood pressure, cholesterol, and weight were always well managed. But I believe that the constant pressure I put on myself, and the high expectations I had, certainly did not help my immune system deal with the situation that was brewing. I worked very hard to become more laid back, patient, and accepting of situations. Friends and co-workers who haven’t seen me for a while comment on how much I have changed. I am still a work in progress though, as new people I meet still find me to be determined and persistent.

How is it possible to see a life-threatening chronic illness as a gift? Accepting my illness as a gift required a massive shift.  My life “before” was pretty good.   But now that I cannot spend my precious energy on pursuing my career and squeezing fun and activities into every moment of every day, I have been given the gift of time…to notice birds singing, to walk my son to school, to read books, to practice yoga.  To nap – even if I do not really have a choice in that matter.

Time to heal all parts of me – physical, emotional, mental, and spiritual. Time to really live.

Developing an attitude of self-acceptance is a challenge for most people, health3y or not.  For me, I needed to acknowledge that I HAVE a disease, but I AM NOT my disease.  Often, people define themselves by what they “DO”… career, parent, activities, friend…. and not by what they really “ARE” deep down inside.  So when what we “DO” is taken from us through illness, we flounder, and feel like the disease has taken “US”.  It’s a very hard road at times.  I have been on this path for over 9 years, and acceptance is still difficult. Flares force me to revisit this acceptance piece, over and over again. It must be true that life lessons are presented repeatedly until they are learned. I am working hard on this one.

I still fight this disease every day; I absolutely refuse to lay down and let it kill me.  I also need to be gentle in my fight.  This is probably the most critical learning on my journey thus far. I do take responsibility for my medical issues, treatments and complementary therapies, stay on top of research, and fight for what I think is the right way to address this disease for me.  But I am gentle with my body.  Gentle with all of me. Pushing too far one day means that I pay for it for many days afterward.  I am grateful for what my body can do, even though it is only a fraction of what it used to be able to do.   I have immense gratitude for what I do have, and no longer grieve constantly for what I have lost.   In many ways I am so much happier and maybe even healthier than ever. Perhaps this is what “healing” really means.

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4 Responses to Living well with EGPA: The healing process

  1. Carrie Shanlian-Grom says:

    Great article! I too am trying to figure out the balance between pushing myself and feeling like I am being lazy!!! My diagnosis is so new and I understand it takes time to create a “history” so I know what will trigger flare ups etc., this truly is a disease that makes you re-focus your life, and to me……that was a blessing ….not easy to do and comprehend…but I am slowly understanding how crazy my life was becoming and I thrived on high stress, sugar and caffeine!!!!! So much to learn and thankful for a community of on-line people that I can chat with!

  2. sheila says:

    Absolutely spot on, brilliant. Thank you.

    • karen in wonderland says:

      We need to Thank Shawna for writing such a brilliant story and allowing me to post it on her behalf.

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