About Me

My photo
Virginia Beach, Virginia, United States
I am a wife,mother,and nana learning to live with a disorder called Chiari1 Malformation with syringomelyia & other disorders all related to the chiari.I traveled a long journey too find results and my wish is to help others find help thru my experiences.I have given up a career I worked hard at for over 3 decades, but the 1 thing that I lost, is I am unable to be the mother I had planned and should be to my daughters, and that by far is the greatest loss of all.I was happy to have validation but accepting limitations is difficult for one who was so active and independent and wanted so much more for my children, as we all do as parents. I made friendships that are more valuable to me than any pill. They make me smile, laugh, and cry,but most of all they saved me from the aloneness.My wish. after a cure is that someday I can turn to a neighbor, new friend, or even a medical professional and when I say I have Chiari the answer will not be "Chiari what is that?" Wellcome to my journey into discovering all I can about my disorders and try to bring awareness and maybe share a laugh with someone and let them know that they too will never have to travel this road alone.

Friday, September 5, 2008

When chronicily ill you have to laugh when


Let's face it. . . chronic illness can have its humorous moments if we look for them.

You know you have a chronic illness when...

You understand all the medical terminology discussed on the T.V. show Grey's Anatomy.

When you hear the term "Club Med" you automatically think of the hospital.
You ask your child to open the "child-proof" bottles of medicine because your hands are too sore.

Your medical records have to be transported on a cart.

To entertain people at parties you recite the side effects of medications as if you are the voice over on a commercial.

Your favorite Oprah program is when Dr. Oz is on.

To get rid of boredom on road trips, your whole family can go through the alphabet and name a drug that starts with each letter of the alphabet.

When you're unable to sleep because of pain, you watch "The Jerry Springer Show" and feel like you actually have a life.

Your spelling has improved dramatically, especially on words like "fibromyalgia" and "osteoporosis."

Or you've been "Around the World in Thirty Minutes" with CNN's Headline News 57 times in one sitting.

You have a panic attack in public and say, "Praise God this is only the fourth one today!"

You're invited to the wedding of the gal who works at the hospital lab.

You're child thinks watching you do injections of medication is "cool."

You have a flashback and don't know what happened and can honestly say, "I don't know where I was or what I was doing but I'll make
something up if you'd like."

Copyright, Lisa Copen, Reprint permission granted if the following is included:

Reprinted with permission of Lisa Copen, Copyright 2007, National Invisible Chronic Illness Awareness Week, http://www.invisibleillness.com

Top 10 things NOT to say to a chronically ill person

See the Rest Ministries/hopekeepers T-shirt with this saying on the back!

10. You can't be in that much pain
9. Stop being lazy and get a job
8. You just want attention
7. Your illness is caused by stress
6. No pain. . . no gain!
5. It's all in your head
4. If you just got out of the house...
3. You're so lucky to get to stay in bed all day.
2. Just pray harder
1. But you look so good!

Copyright, Lisa Copen, Reprint permission granted if the following is included:

Reprinted with permission of Lisa Copen, Copyright 2007, National Invisible Chronic Illness Awareness Week, http://www.invisibleillness.com

Wednesday, September 3, 2008

Articles on CM/SM

information found when googled CM/SM

Conquerchiari.org page of information

one womens experience with chiari.

more websites to be informed on CM/SM.

newswize a website for info on chiari and other medical problems.

Chiari in an older woman 76 years old.

Some symptoms of Chiari to watch for

Posted by Picasa

We as "Zipperheads" were once thought to be rare these estimates are the updates on our numbers and some of our symptoms to look for.
the following facts are not intended to self diagnosis they are informative only and you should always refer to your Doctor for proper medical information and referrals.

Estimates for the number of people with true Chiari range as high
as 500,000 in the United States.
A more conservative estimate of 300,000 would mean that 1 in 1,000 people have
Chiari, or 0.1% of the population.

The majority of patients complain of severe headache
and neck pain.
Other common symptoms are dizziness, vertigo, disequilibrium, visual disturbances, ringing in the
ears, difficulty swallowing, palpitations, sleep apnea, muscle weakness, impaired fine motor skills, chronic fatigue
and painful tingling of the hands and feet.
Because of this complex symptomatology, patients with CM1 are
frequently misdiagnosed.

Headaches are often accentuated by coughing, sneezing or
straining. Patients may complain of dizziness, vertigo, disequilibrium, muscle weakness or balance problems.
fine motor skills and hand coordination will be affected. Vision problems can also occur.
Some patients experience
blurred or double vision, difficulty in tracking objects or a hypersensitivity to bright lights.
Physical examination may
reveal nystagmus (involuntary eye movements).
Other symptoms include tinnitus (buzzing or ringing in the ear),
hearing loss or vocal cord paralysis.
Patients may have difficulty swallowing, frequent gagging and choking and, in
some cases, sleep apnea may be present.
The most frequent symptom groupings include: headache,
pain at base of skull/upper neck, progressive scoliosis (curvature of the spine); cerebellar dysfunction (difficulty with
balance, coordination, dysequilbrium, low muscle tone); compression of the lower brainstem to cause alteration of
voice, frequent respiratory tract infections, coughing when swallowing foods and fluids, compression of the spinal
cord or distention due to accumulating fluid (hydromyelia); suspended alteration of sensation (e.g.
, arms are effected
but legs not); central cord disturbance (injury to central part of spinal cord with resultant weakness greater in arms
than legs); spasticity (abnormally high muscle tone or tightness, especially with movement of the muscle).

Monday, September 1, 2008

Medical information site

great site to look up medical informaton articles related to 10000's of things.

Great medical blog site

Dr.Oro blogs on wellshere a great neducal site,MUST READ.

Another great support group for all of us

Find more videos like this on Illness-Disability-Healthcare-Caregiver Ministry Network

A courageous boy fighting a similar disorder

A boy who is battling a similar disorder to chiari the flow of spinal fluid is similar problem, he is awesome.


this is the government documentation explanation on this boys disorder that mirrors alot of the symptoms of chiari.

informative site for CM

Helpfull informative site for CM sufferes