March 2013

This is the story of how I let my body fall apart. This isn’t quite yet the story of what I’m ultimately going to do about it, but that story is coming.

Today is also Diagnosis Day, the fifth anniversary of the day our J-Man was diagnosed as autistic. It’s often a day of many emotions for me. I look back at this autism journey we’ve been on. I see how far we have come on this road.

CautionAfter spending the first couple of Diagnosis Days wondering how to celebrate it, the last two years I’ve celebrated this road by literally running marathons on it.

But then lately somebody planted a bunch of signs in the middle of my road. And I hit them. And it hurt. A lot.

I am writing this because the signs said, You are killing yourself. You are being stupid. You need to stop. Maybe you are seeing the same signs, and perhaps you can learn from my bad example.

I’ve been struggling for months with what I originally thought were ‘serious, chronic sinus headaches’ but which evolved into full-on, nuclear, apocalyptic migraines that have now lasted in some form 24 hours a day, 7 days a week, for almost the past two months. I have had less than 24 pain-free hours since January, all of which were thanks to strong narcotics.

After a long history of sinus and allergy issues, I figured these would eventually subside enough for me to start functioning OK again. It’s an ongoing cycle with me as the seasons change. I rationalized my way to various excuses. This turned out to be an epic mistake.

This wave of headaches that began in January didn’t go away; they just got worse and worse. The obvious solution was to make a doctor’s appointment, except I didn’t have a primary care doctor. The last two doctors I had were terrible, and I just gave up years ago trying to find a new one. Sorting through the available providers in the midst of headaches is not really the time to do that, but I finally did.

The earliest appointment I could get with someone recommended to me was three weeks after I finally made the call, a call I made at the kitchen table, sitting in the dark, in agony, while I was holding my head up with one hand and holding the telephone with the other. I hung up the phone and cried.

I made a lot of mistakes here, and as I approach my 40th birthday this year, I realize these are mistakes I can no longer afford to make.

A friend of mine was diagnosed with testicular cancer recently. He was smart enough to do the right things and catch it in time. A family member not that much older than us died of cancer recently. I have friends diagnosed in recent years with MS, strokes, and other possible life-threatening or life-altering conditions. Approximately 1-in-50 of my high school graduating class are now dead.

I am painfully aware of how important it is as an autism parent for us to be around for the long run. If something happens to one or both of us, I don’t know what would happen to our kids. Assuming we will be around, the quality of our physical lives is essential to being the kind of parents we want to be. There are many demands in our daily lives, and we want to do more than just survive. We want to be great parents.

Throughout this migraine disaster, Mary has had to be both parents most of the time. We both need to be somewhere in the vicinity of our best most of the time, but instead I’ve been nearly incapacitated.

I screwed up, badly. I didn’t have a plan in place to take care of myself. I ended up not waiting that three weeks and took myself to urgent care, got a CT scan (thankfully was clear), and was treated for a sinus infection (which I did have), but urgent cares aren’t designed for ongoing relationships of medical care. The headaches got a little better but then went downhill again. I finally limped into that appointment with my new doctor on the edge of physically falling apart. That was almost three weeks ago now. Today is about six weeks after I originally made that phone call.

I barely remember the last three weeks. It’s been a fog of medication, scans and labs (all normal, thankfully), numerous doctor visits, lots of time trying to find specialists, more trips to the pharmacy than I can count, lots of time bedridden or unable to get up out of the recliner, so much missed work that it’s a wonder I still have clients, and a trip to the emergency room when I just couldn’t take it anymore. And they still don’t know why I’m having crushing migraines.

I started writing this post weeks ago. My words have meandered and morphed and the point of this post has changed several times. I’m still hurting and my brain is clouded by the medications that are trying to make me better.

But here’s the cold, hard truth. And I accept it. If you absorb nothing else of what I say here, read this because you need to understand this for yourself.

This is my fault. I should have put things in place to take better care of myself and my health. I should have had a regular doctor. I should have gone to the doctor when I started having sinus and lesser headache issues last year. They could have done more to determine a baseline. It would have been much easier to look at prevention and lifestyle changes then. Now, I’m just surviving the day. And everyone around me is paying for it. I let Mary down. I let my kids down. I let the people I work with down.

Redeem YourselfI am not being hard on myself, so don’t even say it. It was my choice to not seek care for myself. It’s my responsibility and my choice. And it’s your choice. You don’t get to let yourself off the hook either.

I made many poor choices. I thought by exercising regularly and eating relatively well that I was exempt from all the other stuff. Wrong.

There are things you do to take care of yourself and to have the people in place you need to look after your health. There are things you do to take care of yourself and your health because you want to show respect to the people you love, to the people who love you. I didn’t do that. And my family is paying for that.

Learn from my mistakes. Take care of yourselves. Get a primary care doctor if you don’t have one. Get a yearly exam. Get your labs and scans done regularly and establish a baseline for you. Go to the doctor for chronic problems long before they get out of hand. It’s so much easier to prevent something or stop something early.

When this is over, I will have learned a very hard and painful lesson. I have lost most of 2013 already, and I will have many, many lifestyle changes to make.

One of the best ways you can say “I love you, too” to your spouse and child is to treat with respect the one they love – yourself. So, start doing that. Right now.

Image credits:
“Caution” – Creative Commons License ptufts via Compfight

“Soda and Pet Food City” – Creative Commons License Rusty Clark via Compfight

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I am not a Catholic, but I decided to observe the election of Pope Francis and his surprise choice of papal name by reposting the Prayer of St. Francis for Autism I wrote a couple of years ago. St. Francis of Assisi is one whose example and words of compassion, strength, encouragement, resolve, and hope have spoken to me over the years, and it seemed fitting to me to post this here again today.

May we on this occasion recommit ourselves to serving and advocating for everyone in the human family until all are celebrated and loved.

A Prayer of St. Francis for Autism
by Tim Tucker

Lord, let thy peace fill me up until I overflow;
that where people cannot speak, I may be their advocate;
that where anyone is rejected, I may extend my arms in welcome;
that where parents are heavy burdened, I may offer a word of comfort;
that where our children struggle, I may lift them up and cheer;
that where some see disability, I may reveal to them extraordinary gifts;
that where others judge, I may share with them my deep gladness;
and that where any are overlooked, I may help the lights of all to shine.

O Giver of These Gifts,
grant that I may not so much seek to be reassured as to reassure;
to be praised, as to praise;
to be accepted, as to accept;
for it is in all our uncertainty that we are inspired to hope;
it is in great challenges that we discover our greatest joys,
and it is in our community of wanderers that we find the way home.



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