Tuesday, January 5, 2010

Happy New Year . . . Maybe

Well, it's the new year, 2010, a decade-starter, a clean slate. Except for people who don't get clean slates, like those of us with "pre-existing" conditions, chronic illnesses that never let us start over from scratch. For me, the New Year means I have to wait a whole year before I can take a week off again, and that is incredibly depressing because I am incredibly tired.

My gut is a mess. I need to get back to swimming (I usually swim every morning at 6 am, but I had an open wound and then surgery, so I had to take a hiatus). Once you stop something like that, it's so hard to start again, and there's NO way I can do it if I can't count on having a half-hour without needing a bathroom, which I can't right now.

I still have the feeling like everybody wants something from me -- and of course, they do -- that's my job, for goodness sake!!! And it's not that I don't want to help -- I do. It's one of the few things any more that gives me any energy. But my fatigue level is such that every time the phone rings, I have to take a deep breath and steel myself for the coming request.

I know it's just that I'm exhausted. I love my work. I even love my life, pretty much. Could I even handle a job out of the house? Pantihose? I'm not sure I have it in me any more. It's one thing to work 12 hour days in sweats three steps from a bathroom; but 12 hour days dressed up? I don't know if I can do it any more.

Still, running this business is so incredibly difficult. Not only am I in a situation in which nobody is worrying about me, but I have to raise all the money, do all the work, supervise the staff and interns -- and on and on. I just had to do end of month, end of quarter, and end of year financials and tax preparation -- it's a huge job in and of itself. And yes, we have some good grant money coming in right now, but it's (1) only for a year; and (2) tied to more work I have to do.

I'm so frigging tired.

This is not an aimless rant. One of the things we're seeing in the responses to our chronic illness survey is that one of the main problems is fatigue, and I totally get it. Sitting up rather than lying down takes effort. Typing takes effort. Walking downstairs takes effort. It just all feels like too much.

I feel like, if I had maybe a month off, I would feel better, but one week while listening to phones ringing and worrying about what's piling up -- it just didn't cut it. I might feel the same after a month. It's about chronicity. Being sick every single day, being in pain 24/7, not getting proper nutrition because I'm in the bathroom 10 times a day, not getting good sleep because I'm in the bathroom -- heck, the phone rang here at 10:45 last night and 8:30 this morning, both business calls!!! There is no time to recharge my batteries.

I don't have a clue what the answer is. I've noticed recently that doctors are prescribing things like Ritalin and Provigil off-label to help people with fatigue. Just what I need -- another pill! I think I'll stick with my one coffee per day. Still, it's tempting.

Anyway, my point is that chronic illness = tired -- period. And so I turned down an 8 city tour to talk about chronic pain because I can't bear the thought of 8 trips. And I will turn down other things. I will do my best to keep Advocacy for Patients going. I don't know what to do about the fact that our caseload is up so much -- I am telling people how to solve their own problems rather than taking their cases much of the time, which is less fun and interesting for me, less beneficial for the patients (I know, I'm empowering them and that's good, but having a lawyer really does make a difference with an insurance company). I'm doing everything I can to cut back and protect myself. But beyond that, I have no clue how to deal with a fatigue so deep and profound that sitting up takes effort.

I guess I keep doing it one day at a time. But it's not a whole lot of fun. Jennifer


  1. It's likely many folks have already e-mailed you about your chronic illnesses, but perhaps another may help some. Having been through what you are facing, but with other chronic illnesses, two possibilites occur to me. The first is to get help at a Hospital like Johns Hopkins, Mayo Clinic, or Cleveland Clinic. Those three are constantly in the top five for treating all kind of organ or body system problems. I believe U.S. News and World Report did a hospital rating issue this past Fall. I believe you would have your appointments on one campus and a team of doctors and health care professionals would work with you to help you meet some goals for better managing your life.
    Here's a link:


    Second, I've read time and time again to listen to what your body is telling you. There is a Ph.D at Stanford who works with folks who have Fibromyalgia and other illness. He helped himself to function without as many crisis and tries to teach folks to work within their energy envelopes. Here's a link to start with for understanding his work:

    Actually, this refers to Dr. Bruce Campbell who started by helping himself and then many other patiens with his work at Stanford:


    It seems to me from what you've written here that you may need to rearrange your life some and perhaps ask for some more help with your advocacy organization. It won't happen overnight but how about establishing a training program where you and others teach willing volunteers to help people to navigate the health care system. Perhaps such a group could take some of the easier load off your back. You know, I think you've probably thought of all this, but sometimes it's helpful to have someone else say it.

    Finally, here's a link to a consumer organization that does a national assessment of physicians by areas of expertise:

    It costs about $30 per year to join them, but it's an invaluable resource.

    Hope this helps. Your friend Frank

  2. Frank,

    First, thanks for all this thoughtful information and advice. I appreciate it, and I think others may well, too.

    I go to an expert in Crohn's disease in New York City and I think she's great. I'm on every medication known to humankind. The last thing I feel like doing is spending a week or two getting poked and prodded every which way by a whole new set of doctors. When my condition was really acute, we did consider going to Mayo, but we ended up in New York and I'm glad we did. I've heard that places like Mayo are not very patient-friendly.

    I'm definitely going to be using some interns and part-timers, and I've been trying to "coach" patients to learn to do things for themselves. One of the things that makes it hard to farm out work to volunteers is that we have so much confidential medical information -- I can't just release it to people. But I have two interns and a part-timer coming on board in the next few months, and that definitely will help. Then, of course, the challenge becomes (1) supervising; and (2) figuring out where to put them since we work out of my house!!! I think you're right that a transition is needed; it's just going to take time to figure it out.

    And yes, I believe we should all listen to our bodies. I know this because every time my B-12 gets low, I crave beef!!! The problem occurs when there's a disconnect between your brain and your body and you can't hear what your body is saying.

    No matter what, I keep coming back to the point I made in this post. The biggest problem for people with chronic illnesses is fatigue. There's no clear treatment for it. It's just part of being sick and in some degree of pain 24/7.

    I'm going to check out your resouces now. I really appreciate you taking the time to try to help this sick old lady keep on truckin'! J

  3. Jennifer,

    You seem very helpful. I have to write a letter from the perspective of the patient for anti-TNF medication. My physician has been denied by my insurance twice. My insurance company is asking for a letter from the patient (me) to appeal a third time. I am looking for sample letters. Do you have any ideas where I can get this kind of information? Please help me. I'm old, hurting, and desperete.

  4. Jane Doe:

    I can't post this all on a blog. Please email me at patient_advocate@sbcglobal.net. I need to know which anti-TNF blocker it is and why they're denying coverage. Jennifer