COVID COVID Go Away – A Test in Self Advocacy!

As it turned out, self-advocacy really was the key. Learning to advocate for myself made all the difference as I faced the unknown. Self-advocacy is such an important part of chronic illness, but one that sadly we often set aside. Remember, your healthcare is about YOU, and your relationship with your doctor is a PARTNERSHIP. You have a right to speak up. You have a right to be heard and taken seriously. You have a right to be involved at every level!

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Hope Will Long Last

A migraine poem by Deborah Bloom: Hope Will Long Last – Some may question this disease that they cannot see but it is not invisible to you and to me. Migraine you may refuse to let me loose, but I will continue on my quest; today and the tomorrows I will pick myself up and strive to do my best

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The End of the Line? Part 2

With six weeks of an intensive pain program under my belt I’m finally able to see the finish line of this 8-week journey. The lack of blogs and posts the past few weeks likely tells its own story – I’m exhausted! But apart from exhaustion, are there things to be learnt? Has this been a worthwhile experience or a lesson in futility?!

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The End of the Line? Part 1

So today my journey finally began, and I have a ton of mixed emotions about going into the St. Judes’ Chronic Pain Program here in Orange County, CA. It’s a curious emotional cocktail of anxiety, hope, fear, curiosity, doubt, stress, courage, and even skepticism. Somehow I just refuse to give up hope, even when the odds for pain relief seem stacked in the wrong direction. There is in most of us an indomitable spirit that ultimately just wants to keep going. But there are so many questions: Is this the end of the line? What if I fail in the program or rather, if the program fails me? What are realistic expectations? Is it possible to set goals when there are so many unknowns?

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I’m Sorry

Migraine disease is incurable and often completely disabling – it’s time to stop saying, “Sorry.” I’m sorry… I can’t be thereI often let you downSo sorry I’m a burdenTo all of those aroundI’m sorry that the dreams I dreamWill never come to beSo sorry that the person I once wasYou cannot see And I’m sorry…

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