My Dad

My dad passed away last night.

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My Dad is in Hospice

My dad went into hospice yesterday. After two years of searching for a diagnosis, a lung biopsy last month revealed he has an extremely rare disease called Erdheim-Chester. In short, his body is producing too many of a certain kind of white blood cell. The extra cells are overloading his organs and shutting them down.

My thoughts are too jumbled to write more. It all feels so unreal.

This week at Help My Hurt

Hi folks, here are some posts from Help My Hurt that you may find interesting. Thanks for stopping by!

Marijke has volunteered to keep The Daily Headache running while I’m on vacation. An RN turned writer, her excellent blog is called Help My Hurt. -Kerrie

Testing My Limits With Cookies

In my struggle to decide if I’m sick enough for the couch or giving into the pleasure of reading a little too soon, I’ve found the million dollar question: Can I bake something?

As much as I love to read, baking will always win out. If I feel well enough to bake, I will do it. Because I always, always want to do it. There are plenty of times that I want to bake and have to talk myself out of it because I know I’ll totally wear myself out. But if I am physically capable of it, I will.

So I ask myself if I want to — and can — bake. If the answer is yes, then I know I’m well enough to do the minutiae of life. Sometimes I’m even clever enough to choose to baking over minutiae.

July Headache Blog Carnival – How Spirituality Helps Us Cope with Migraine Disease

July’s Headache Blog Carnival is now live.

Generally speaking, a blog carnival is a collection of links to a variety of a blogs on a central topic. The Headache & Migraine Disease Blog Carnival has been created to provide both headache and migraine disease patients and people who blog about headache disorders with unique opportunities to share ideas on topics of particular interest and importance to us. Visit the link to this month’s carnival for a collection of informative entries on how spirituality helps us cope with migraines and headaches.

Pain Scales: Quantifying the Subjective

Whenever a health care provider asks my pain level on a scale of 1-10, I start with a disclaimer. Pain levels are entirely subjective and it is nearly impossible to assign numbers to vague concepts that vary from one person to another. This comparative pain scale is one of the best I’ve found, but my level 3 is a 6 on this scale

Putting numbers into words makes an ill-defined, fuzzy scale into perspective. Detailing what the numbers mean to you may help you track your pain more consistently. Some people recommend sharing the detailed chart with your doctor. Not a bad idea, except few doctors have the time to sort through all that. And he or she can’t keep track of what your scale means compared to Jenny’s or Lucy’s or Dave’s. It may be too much information to expect them to digest.

Instead of trying to assign numbers, researchers usually use a simple scale of none, moderate and severe. I use a more detailed version with mild, mild-moderate, moderate, moderate-severe, and severe. I still refer to numbers sometime, but they are always within the context of this classification. For example, 6 is moderate, 7 is moderate-severe.

What’s your pain scale? How have you communicated it to your health care providers?

This week at Free My Brain from Migraine Pain

Posts this week over at Free My Brain From Migraine Pain range over a variety of topics:

  • Being Prepared to see the Doctor: It takes two to tango in a doctor-patient partnership. I draw on some great resources to prepare for my long-awaited headache specialist appointment.
  • Exercise and Migraine Prevention: Take Two: New research indicates no proof of a connection between exercise and migraine prevention. It may not be proven, but there are still lots of reasons to think exercise is good for migraineurs. Some discussion of why, with some personal anecdotes thrown in.
  • Believing in Ghosts: Okay, I don’t really believe in ghosts, but sometimes when a Migraine takes me by surprise it reminds me of my nightmares.  I can’t explain – read it and you’ll understand!
  • God Grant Me the Serenity to Accept the Migraines I Cannot Change: How I use spirituality to help me through Migraines.

Megan Oltman, a migraine management coach, has volunteered to keep The Daily Headache running while I’m on vacation. Be sure to check out her blog, Free My Brain From Migraine Pain for more thoughts, tips and techniques on managing life with migraine. -Kerrie