Friday Tired

Friday Tired is the name of my first book. It describes how I was feeling at that time all the time -- like every day was Friday, exhausted.

However, when I wrote that, as horribly sick as I was at that time, I don't think I really knew how tired I could be and still be alive.

I am shaking like a leaf. I can barely see my computer screen. I can't sit up without propping up my head on my hand. The thoughts in my head aren't coming out of my mouth the way I mean them to. Is this making any sense?

We've been conducting a survey with the University of Michigan Center for Managing Chronic disease on the obstacles facing the chronically ill and the strategies they find to surmount them. Over and over, the respondents talk about fatigue as their greatest challenge. And they don't have great solutions for the problem, either.

Since it's Friday, I'm going to give myself a pass on trying to figure out a solution, for myself or for all people with chronic illnesses. I'll be satisfied with just getting through the day. But it's something to think about. There has to be a way to live with chronic illness that doesn't feel so damned difficult. Jennifer

The Crisis in Primary Care

Excellent article on the crisis in primary care -- here's a link. Jennifer

NY Times Answers Questions on the CLASS Act

The NY Times article can be found here. Jennifer

Me Today

I haven't posted much lately -- oh, sure, I've tried to keep you up to date on health reform issues and all that. But I haven't talked about me too much because i haven't wanted to say out loud what is in my mind: I can't do this any more. I'm too tired. I don't know if it's because I'm really sick -- my Crohn's is pretty much silent unless you count the 15 prescription drugs I take every day. I have some bouts of nausea and vomiting from the gastroparesis, but they pass. Still, I can't talk myself into getting out of bed an hour or so earlier so I can get back to swimming. On nights when I work late, i can't figure out what to do about dinner, so I eat a cookie and some pretzels and go to bed. My sleep is never uninterrupted, either by the need to use the bathroom or thoughts that are too loud to sleep through.

Work is under control, relatively speaking. My assistant Celeste is leaving and her sister Echo, whom I have loved all her life, is taking her place. I should feel calm about it, but I don't. Celeste knows how to let my stress roll off her back; I'm afraid Echo will try to take it on, and that's a crazy burden for anybody to bear, including me.

But right now, we have enough money so I can pay someone part-time to help with the workload from a couple of grants we have. The Pearl Jam fan-based nonprofit Wishlist, with the help of Mike McCready and his wife Ashley, has just raised a lot of money for us. I think we're pretty much good through the end of the year. How crazy is it to already be worrying about next year?

I have some fun things coming up. Pearl Jam is coming East. I will spend some time with Mike before the Hartford show, and I will go to the last night of the tour at Madison Square Garden, and I'll see Ashley at some point, whenever she's free. And James Taylor and Carole King will be here for my birthday. I have a seat on the stage, first row, seat 1 -- they have a rotating stage with a bunch of these onstage seats purchased at ridiculous amounts of money with much of it going to charity. What better birthday could I ever want than to be at eye-level with James Taylor and Carole King for a few hours listening to them fill my heart?

So if everything's so good, why am I so unhappy? It feels like exhaustion more than anything else. Like I've just plain run out of steam. I know at least some things I could do that would help -- swimming, eating right, not working so late so often. And I know some things that are making me very unhappy -- one work relationship in particular -- that I could pretty much walk away from and not really suffer. Indeed, the other party to the relationship is doing nothing, so if I just stop pushing, it will just fall away.

And that's really it, at bottom. If I stop pushing, it all just falls away. That's what has me in its grip. That's what makes me unable to find the will to change course in any way. Part of it is just that I'm afraid to do anything to shift the inertia; if I stop doing anything but moving straight forward, it will all fall apart. Part of it is, indeed, pure exhaustion. Part of it is anger and resentment -- why doesn't anybody care enough to find some way to help me (I have no clue what help I need or how anybody could do it, but I angry at being alone in this struggle)?

I get calls from people who are where I am all the time. They apply for disability, fight for two years, drain their savings, then learn to live on nothing -- I don't want that life. But I don't want this one, either. And when I find myself unable to picture any life I want, I am nothing but black. (Please don't worry; I'm talking about emotional stuff. I have no intention of hurting myself or taking any steps to end my life, now or at any time in the future. I'm just talking here.) And sadly, I don't have me to call and talk to.

I know what i have to do. Once again, I have to pull myself up out of this hole, get back to swimming, figure out how to eat at least one meal including protein every day, do something about my inability to sleep -- I have to change course. It just takes so much energy. And that's the one thing I don't have.

I'll see my shrink tomorrow. I usually see her earlier in the week, so she's not used to seeing me totally shattered. I'm glad this is working out this way. She should see how I look when there is nothing left of me. I need her to see this so she can really help me out of this rut.

So there it is. Me today. For what it's worth. Just so you know there are no heroes. We all have black days. Jennifer

Small Business Owners Have Mixed Reviews on Health Law's Tax Credits

Kaiser Health News here. Jennifer

Notice of upcoming event

Do you have questions for our health experts about how the new bill will affect your healthcare, and more specifically, the insurance industry?

Check out our webchat this upcoming Friday April 30 at 2:30 P.M. ET, to learn even more about how the Affordable Care Act will hold insurance companies accountable so that the health care system works for you rather than against you.

Watch live at www.hhs.gov/live.

Send your questions to healthreform@hhs.gov and we’ll answer as many as possible during the webchat. We will also take questions live from Twitter using handle @HHSGOV.

We want you to keep you updated on how the new law will improve your health security and the health security of your loved ones.

This week’s show will be our fifth webchat in our series. Each week we will be discussing different aspects of the new health reform bill so that you, your family and friends can get your questions answered.

You can find previous webchats on www.healthreform.gov and browse the site to find all the latest information available from HHS on the new law.

Thanks for taking part in our weekly webchats and please keep watching to get your questions answered!

Jenny Backus
Acting Assistant Secretary of Public Affairs,
Moderator of the HHS Weekly Webchat

New High Risk Pools in Your State?

From Politico -- what will the states do? The article is here. Jennifer