Monday, March 28, 2011

Paws for Comfort

Did you there are tiny, precious "service dogs" trained just for helping out folks with chronic pain? Their gift is heat as they lay across shoulders or other areas of pain for their beloved owners, sharing body heat as a living "heating pad." An organization called Paws for Comfort® "is particularly dedicated to increasing public awareness of under recognized populations of people coping with chronic illnesses, especially invisible conditions, such as Fibromyalgia and Chronic Fatigue Immune Deficiency Syndrome."

Xoloitzcuintli (a rare breed also known as the "Mexican Hairless") can be specifically raised to assist in chronic pain relief. They are tiny so as not to add to pain with too much weight. They are also hairless, a wonderful benefit for those with allergies! Check out Paws for Comfort® to learn more. :)

Saturday, March 19, 2011


"You don't look sick."

"You look so good today! You must be feeling better."

How do I reply? Do I say, "Thank you!" and leave it at that, knowing someone is trying to encourage me?
Do I reply with the more honest, "Thank you for the compliment, but no, I'm really not feeling well at all." or "I wish I felt as good as I look then!"

One of the drawbacks of an "invisible illness" is that looks can be deceiving. As God told Samuel in l Samuel 16:7, "The LORD does not look at the things man looks at. Man looks at the outward appearance, but the LORD looks at the heart.” What you can see isn't always reality.

Most people see the "face" of a healthy-looking me, the vast majority of the time. They cannot see that I live with a ticking time-bomb called XMRV that can land me hard down in bed with the smallest provocation, or sometimes for no apparent reason at all. They can't see that I'm one step away from walking past a balloon and landing in the hospital for a latex allergy like I did this week. They can't see that I struggle every day to get out of bed and try to lead as normal of a life as possible, despite immobilizing fatigue and every-changing levels and kinds and cycles of pain or cognitive dysfunction and a variety of other symptoms ranging from the annoying or distracting to the downright unmanageable.

So today I though I would show you two different faces of me, the one most people see, and the one that better reflects how I typically feel, the one you usually don't see because when I get to the point where my inward struggles manifest themselves so outwardly, I'm buried away inside the protective bubble of my own home (or in this case, the hospital). Here I am, sick in both pictures, but you would only know if from one.

Added to say, as to how I can reply to those comments, my friend, Lisa Copen, has put together a bunch of great ideas on her website:

Helpful list of latex products and latex-free alternatives: Directory of Latex Free, Non Medical Products - UK

Latex-free event planning and alternatives. Including tips such as, "Teachers that use balloons for in class pressure experiments can try inserting a rubber balloon inside of a clear 18" plastic balloon just before class.  This will allow most experiments to be conducted without other modification".

"A quick google search turned up over 200 schools in the US alone that banned latex for the 2006-07 school year.  While my googling turned up lawsuits on both sides of the issue (parents with children that have a latex allergy suing to force a ban and parents who sue over being saddled with the sometimes very high additional costs involved when a ban is put in place at their child's school), as entertainers we should expect these numbers to continue to grow on a year-over-year basis.  "

Non-latex balloons and ideas.

I love this sign!

My more recent article on When Balloons Are Scary is at

Wednesday, March 16, 2011

Thorny Situation

Dr. Judy Mikovitz has been an incredible advocate for CFS patients even as she dedicates her life to life to research on our behalf. Here's an in-depth article showing many facets of the political debate surrounding her work in XMRV research. I continue to uphold her in prayer, that God will bring truth to light, and invite you to do the same.
When Judy Mikovits found links between chronic fatigue syndrome and a virus, the world took notice. Now, she's caught between the patients who believe her work and the researchers who don't.
- Virology: Fighting for a Cause