Two Essays on Living with Chronic Illness

I'm back, finally, after a very long and difficult month. My dad went into hospice this month after a year-long battle with melanoma and passed away two weeks ago. We have been away most of the month - by his side in hospice, on a vacation planned long ago, and back in Rochester again for his memorial service this week.

So, now we are trying to return to normal life (or as normal as our life gets, as my husband says!). We came back home to car repairs, appliance repairs, college tuition due, and a host of other urgent matters to take care of.

While I catch up and try to to get back into a more normal routine, I thought I'd share two recent essays of mine on chronic illness that were published while we were away this month:

The website Mamalode published my essay 5 Things I've Learned From Living with Chronic Illness in early July. Please take a look and share it with your friends and family - it's a positive perspective on this crazy life we all lead, but it is also applicable to healthy people, too. Everyone can benefit from slowing down, simplifying, and finding more joy in the little things.

Last week, the ProHealth website (which I highly recommend for up-to-date and accurate information on our illnesses) published my essay Riding the Chronic Illness Roller Coaster, about the emotional ups and downs of living with chronic illness and how to cope during the difficult times. It's a topic I have often written about here on my blog that we all struggle with, whether we've been sick for 1 year or 20 years.

I would love to know what you think about either of these topics - you can leave comments on either website or right here on the blog.

And I hope to get back to regular blog posts soon, once I get all this urgent stuff taken care of!

New Essay on Chronic Illness Published

Sorry I have been absent from the blog for a while. My dad just passed away this week, and we spent a week by his side in hospice in my hometown (Rochester, NY). I won't be posting here much for another week or so, as we will be traveling a lot and going to the service. My dad fought a brave battle against melanoma, and we are grateful that we had a full year with him after his diagnosis and spent many weekends together. It's still hard to believe he is gone.

On a lighter note, my essay, 5 Things I've Learned From Living with Chronic Illness, was published on Mamalode this month - it describes some of the silver linings of our family's illnesses, a positive view of this crazy life we all lead! Hope you will check it out. I'd love to hear what you think.

I'll be back to blogging regularly when things settle down a bit.

Dad and I dancing at my wedding

Weekly Inspiration 7/5: Living Beyond Limits

Amy Purdy, who lost both her legs and her kidneys and spleen to meningitis at 19, starts out this inspiring TED talk with this thought-provoking question:


"If your life were a book and you were the author, how would you want your story to go?"

From there, she describes her own experiences in this emotional, heart-wrenching, funny talk, from her hospital bed to becoming a professional snowboarder and Dancing with the Stars competitor. She focuses on using her imagination to overcome her limits in new and unique ways. Check out her brief but inspiring talk:



Although our situations with ME/CFS are very different than hers, there are plenty of parallels, and her positive, can-do attitude is inspirational.

When I think about her key question, above, my answer is, of course, that I would like a happy ending to my story; I would like to be victorious over my limitations, as she has been.

For me, personally, this comes down to two main strategies that I have taken with my illness and my life:

• Find joy in every day.
• Never stop trying to get better - trying new treatments, keeping up on new research, working as I can to strengthen myself and improve my quality of life.

Essentially, I feel it is important to always keep striving for answers and improvements, while also enjoying life right now as well as I can, in light of my current restrictions.

How about you? "If your life were a book and you were the author, how would you want your story to go?"

Update & Stress

I just realized I haven't posted anything here in a week and a half, so I thought it was time for a quick update.

I've mentioned before that my dad has been battling stage 4 melanoma for the past year, and things have worsened considerably the past month or so. The cancer has now spread to his brain and the spots on his liver are affecting his digestive tract. He's been hospitalized twice in the past two weeks, and we went to visit him last weekend, during his brief time at home (which all explains where I've been).

We had a good weekend with him, though he was horribly weak and frail. Still, we made the best of it and enjoyed a card game, watching old home movies together, and enticing his appetite back with some of his favorite foods. Unfortunately, he was back in the hospital just 24 hours after we left, with swelling in his brain. My sister is there with him now, and we are back at home, anxiously waiting for news.

So, yeah, a lot of stress...and you know what that means when you have ME/CFS. I've been doing OK, but my symptoms are flared up a bit today, and I am just feeling run-down and worn out. Besides worrying and waiting for an update, I am anticipating additional trips there (about a 7-hour drive away), probably last-minute and unplanned. We have some limited vacation plans this month, so I'm a bit worried about that, too, though we'll actually be traveling within NY state, not too far from where he lives.

That's where I've been! Sorry for the blog silence - I will try to get back to posting more regularly.