Novel Patient » Insurance

Pain Scale

Novel Patient — Sat, 10 Oct 2009 04:27:21 +0000

"How would you rate your pain on a scale of 1-10?" I detest this question. But I get asked it all the time from my doctors. How can you apply a pain scale to chronic pain? I don't even remember what no pain feels like. So the whole scale s Share

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My Own Advocate

Novel Patient — Mon, 28 Sep 2009 04:05:33 +0000

Right now I’m waiting for some extra pain meds to kick in. I’m trying to tapper my Prednisone dose down from 25mg a day to 20. It doesn’t seem to be going well. After dinner that telltale Autoimmune Pancreatitis pain started up for the first time since I was in the hospital last. Not good. I’ve also been running low grade fevers in the afternoons. I suppose I’ll be putting in a call to my Rheumatologist tomorrow.

I also need to call my Internist for an appointment to check out what seems suspiciously like a sinus infection.

And I have a handful of other medical related calls to make (including some especially dreaded ones to my insurance company). It’s enough to make me want to go hide under the covers and go back to sleep.

I always tell people that you have to be your own advocate, but it can be downright exhausting under the best of circumstances let alone when you are sick.

But I, like so many others, don’t have anyone else to do it for me. So I have to be my own advocate. I have to stay on top of these phone calls and appointments and lab results and new symptoms. But lately it just wears me down and out. It’s a lot of stress and a lot of effort. Mentally and emotionally. It’s all in the details, and so much is at stake.

It shouldn’t be this way though. When people are sick they should be able to just focus on getting better and not navigating through medical bureaucracy and red tape. It scares me to wonder what would happen if I became completely to ill to do it for myself. Who would advocate for me then? There are so many people already in that very situation. I shudder to think what kind of care they are getting.

There must be a better way.

In the meantime, I do what I have to do regardless of the brain fog making it hard to think straight and the fatigue making it hard to keep my eyes open. Because I’ve learned that even though being a professional patient is a full time job, you don’t ever get to call in sick.

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The Rituxan Gamble

Novel Patient — Mon, 22 Jun 2009 00:40:03 +0000

Lately I've been gambling a lot. No, not at the casino, but with my life. My life, I'm realizing more and more, is a gamble. I hope and I wish and I make educated decisions with risk analysis, but in the end I must simply roll the dice and see Share

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Novel Patient — Wed, 22 Apr 2009 20:09:49 +0000

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Novel Patient — Fri, 17 Apr 2009 22:06:03 +0000

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Novel Patient — Tue, 14 Apr 2009 23:15:38 +0000

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Numb

Novel Patient — Wed, 25 Mar 2009 08:17:24 +0000

Literally. I bit my lip so hard I tasted blood, but felt no pain. Most of the skin on my face, my lips, my tongue are more or less numb. The strange thing, I realize now, is that it's been happening so gradually I hadn't noticed until tonight. Share

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