Chronically on our own

This blog is about me, except it is about you. Everyone says that, I know.   People do relate to being sick.  I have MS.  You have whatever.  Or your spouse or a kid does, a close friend or neighbor.  Who speaks for us?  Not me, friend.  I was not elected.  So we have to speak for ourselves.

A life battling a serious chronic illness becomes a slog through treacherous terrain, hell with no hope.  These chronic conditions are incurable and tough to treat.  This illness, heart disease, diabetes, mental illness, etc., guarantee pain and suffering.  What I am trying to say is, being sick sucks.

Permit me to offer a short primer.  Five years ago, 90 million Americans lived with a chronic condition.  Now, more than 133 million of us do.  Staggering, huh?  Aging baby boomers are the problem.  And the population only gets older.  75 cents of the healthcare dollar pays for chronic care.

Get it?  Republicans don’t.  Long term care is hugely expensive.  And these are not just statistics.  They are real people.  Us,  Our parents.  Aunt Margaret, you know, the one with bad breath.  Who is going to pay for all this?  The GOP cannot stand that footing the nation’s medical bills will be no picnic, and it has to happen.

My forty years of dancing with MS have been no picnic.  Two bouts of colon cancer were icing on the cake.  I have a good life.  My advice to those living under the same life sentence is, get used to it.  Own it, and find your own good life.  It is out there.

Over the years, I have lost vision, mobility, use of arms and hands.  Then there is cognitive function.  My pal Teri Garr, one of the funnier folks on the planet , refers to her MS as, “a scum sucking pig of a disease.”  But what do you really think, Teri?

These conditions all are sucky.  They are different and hit different parts of the body in various ways.  What about the emotional fallout?  The coping issues that go with chronic illnesses are remarkably similar.  They bring practical problems and change how we see ourselves.  We are going to share thoughts about that.

I plan to track my experiences with harsh chronic illnesses on this blog.  I am not special.  My difficulties probably are no greater than another’s, but I write and share.  I am willing to share with others.  Sharing is important.

When cancer came, and MS did not take kindly to the competition, I wrote a series of essays about the dueling diseases for the Science Times section of The New York Times.  My editor told me I had a large following because I had no M.D. after my name, referring to the many doctors who write for them.

Screw the docs.  Patients want to hear from each other.  We want to know what it it was like.  How did you get through it?  I already know to take Vitamin D and wash my hands after I use the bathroom.  So I do not read the docs.

I want to hear from you.  Honest.  I am a patient, too, making it up as I go along.  We really do have a lot to tell each other.  And think of the doctors and hospitals we can trash.  This will be great.  Think of the therapy bills it will save.

4 Responses to Chronically on our own

  1. Karen October 15, 2013 at 10:03 am #

    This is great, and just what I’ve been looking for. I have MS too. You wouldn’t know it – I’m walking, talking, working, parenting like a fully healthy person. But I have it and I know it for sure. The pain, more than anything, gets to me. And even with an incredible husband and support system, it’s a pretty isolating disease. This blog will give me a place to connect. Thank you!

  2. AR October 17, 2013 at 9:59 pm #

    I loved your book, and appreciate your take on living with MS. Candid, funny, sharp,insightful, and *moving.* Thank you for starting this blog! I’m an academic in NYC, the primary caregiver to my young child, and living with progressive MS. It’s NOT EASY.

  3. Shasha December 13, 2013 at 9:36 pm #

    HI, I take 5000IU of Vit D3 and 2000mg of fish oil daily, coenzyme Q10, B vitamins, zinc, krill oil, Vit C and more. When I got to 5000IU of Vit D3 I stopped crying for no reason. Vit D3 is actived compared to Vit D.

  4. Shasha December 15, 2013 at 12:53 pm #

    HI, Chemo/radiation may hurt the gut lining like gluten and GMO food. Then nutrients may not absorb and cells are not made right to work right and burn oxygen. Painkiller may make the immune system go down. Eating no gluten/dairy/soy/sugar..taking vitamins/good oils and LDN helps my gut lining. This diet may help cancer not come back again and may help MS and many other health issues. B vitamins may help pain. Bone density may increase due to this diet that helps minerals absorb. I take Osteoprocare instead of dairy, Vit D3, Vit K2, Nattokinase, exercise, Vit C, Si, Glucosamine/Chondriotin. bioidentical hormones and more help my bones. I wish you the best. Celiac is the root cause to my MS…dealing with that helps my body heal. Tests may not work to diagnose Celiac. Best wishes.