Friday, December 14, 2012

a few of my favorite things

The holiday season seems like the perfect time to share a few of my favorite things.
These products have been a big help to me as I deal with the daily aches and pains associated with
Ehlers Danlos Syndrome and Chiari.

Peaceful Mountain Muscle Ice- A cool menthol gel that lasts longer than bio-freeze. It helps me with
sore joints, migraines, TMJ and RLS. A great big hug to the genius behind this product. It has helped me
get through some pretty tough nights.

Vanicream bar soap and lotion- free of dyes, fragrance, masking fragrance,lanolin, parabens and formaldehyde. The best product I have found for my super sensitive skin.

Loctite brush-on super glue- When your finger tips split open and hurt so bad you can barely form a sentence.....brush it on and find relief.

Corelle dinnerware-
Light weight, smaller sized plates and bowls and super durable.
Easy on your sore and hypermobile joints and drop it all you can handle the daily mishaps of an EDS household.

Tuesday, May 1, 2012

Bless me father for I am annoyed

Since being diagnosed with Ehlers Danlos Syndrome and Chiari, it seems important for others to know what I believe, if I have faith and if I have been saved. For some reason they feel it is necessary for my beliefs to be consistent with theirs in order for me to be "okay" should I meet an early demise.
So, here is my answer.
Do I believe? Yes. I believe in the following...
I believe that kindness matters.
I believe in being authentic.
I believe that things work out best for people who make the best of the way things work out.
I believe that pets bring joy to a household.
I believe that true love is rare and should be valued as such.
I believe in being grateful for the things you have.
I believe that happiness is not a constant state to strive for but the choice to recognize the many
delights that come your way.
I believe that glitter makes the world a better place.
I believe that funny is funny and laughter is rarely inappropriate.
I believe you should live your life and not interfere with how others live theirs
I believe that in the end we live on forever in the hearts of those that loved us.
Do I have faith? Yes
I have faith that when I am in need my true friends will be there for me.
And I have faith that things happen for a reason.
Have I been saved? Yes and no.
I have not been saved from the heartache, disappointment, sadness, and suffering that are a natural part of life. I have, however, been saved from despair over such happenings by friends and family that care for my well being, a sense of humor, positive attitude, resilient spirit, and Ben and Jerry's Chunky Monkey ice cream. And I am certain that I have been saved many a time by my quick wit, innate common sense, good judgement, and inner strength.
I think the Dalai Lama said it best
This is my simple religion. There is no need for temples; no need for complicated philosophy. Our brain, our own heart is our temple; the philosophy is kindness.

Friday, April 6, 2012

Blah Blah Blah

It's been awhile since I have posted. I guess I figured people are just as tired of hearing about my health as I am from dealing with it. So much has happened since my first visit to Maryland(April of 2011)to meet with Dr. Fraser Henderson and Dr. Claire Francomano.
I have now met the diagnostic criteria for Chiari malformation. That's 5mm of your brain falling through your skull to put it bluntly. My C5 and C6 vertebrae are now plated and fused and my spinal cord has been untethered. Spinal surgery was so much easier than I expected. A piece of cake compared to knee surgery.I am sure the magic hands of Dr. Henderson had a thing or two to do with it. And untethering my spinal cord has provided an amazing amount of relief. Haven't needed meds for back pain since about a week after my surgeries. I have a few more items to add to my list of EDS related challenges. Esophopharyngeal dysphasia aka jacked up swallowing.Slight Unilateral vocal cord paralysis which is a result of the chiari and will be a help in monitoring when it is time for brain decompression surgery. Dr. Henderson says "you will know when it's time" I understand it, the brain falls and puts pressure on a nerve that controls your vocal cords. I also have a hypoplastic A1 segment which means I am missing a part of a vascular structure in my brain known as the Circle of Willis. This increases your chance of brain aneurysm.
And finally in my list of new and fun EDS related oddities is a hiatal hernia.
So, blah blah blah I'm still falling apart...blah blah blah seeing a Dr. about this and that...blah blah blah I still have my chin up and am fighting the good fight with humor and sleep and meds and friends....and my dog Harvey.