My Choice

Yesterday I posted a great piece about how having a chronic illness can change you or NOT?!
I have been thinking since then how my illness changed me...and it has in a lot of significant ways.
I am less guarded about my personal life...Some days I will tell a total stranger about my daily struggles.  I find it therapeutic to talk about it with strangers than with friends and family because I am always, always so afraid that I am burdening them...and I just couldn't live knowing that  I am burdening them.  So telling it to a willing listening ear whom I wont see again makes sense to me.
I do not alert my family about my daily pains or other issues unless it's very, very bad and/or it's something new.



I look forward to each day with a lot of enthusiasm...simply because it's another day that I there for...I appreciate and enjoy every single day!  Even if I sit on the sofa watching television because I am in so much pain and can't do anything else.  

I am more forgiving...I came to the conclusion that it's not worth the stress and being at peace is a much better option. Plus my symptoms are worse when I am stressed.   People who don't have a chronic ill should try it too...you'll find that it's way better for your health.  Sometimes people don't quite get it when I say "I don't want to fight anymore"  I guess because it's not a normal thing people say and actually mean it??

Thankfully I was never the one to feel lonely when I am by myself, most days I am alone ... like today it rained, sleet and snowed all day. Several people kept in touch with me to make sure I was ok though.

One great thing about illness is that I get to see and experience the goodness in people. Strangers, friends, family...it is so heartwarming to see the effort and the extent people will go to help and comfort me.  

I am not as embarrassed as I use to be to eat out... I am right handed but due to the tremors and severe weakness I have started using my left hand to eat and do a lot of other stuff. My left side is now showing the wear and tear of constant use and now I have minor tremors and sometimes severe pain' but I am not letting it bother me.  Just the other day while I was in the lady's room my husband got me soup at a restaurant.  I almost said I don't drink soup in public anymore but I thought it was such a kind jester that I sat and enjoyed it and didn't care if anyone though me odd in anyway when my head was bent over and close to the bowl to avoid spills.

Material stuff and lots of money is passe to me... I am happy with just enough to pay the bills, eat out once in a while and maybe a bit of travel.  

I volunteer for a few hours at an art gallery and I love it!  I love it because it gives me a sense of independence; I don't need anyone to drive me to there because it's a minute from my home; I am surrounded by beautiful interesting art!   What could be better??

I do have my moments when I feel totally defeated....When my mind tells me I can walk this far but I really can't; when I attempt to reach for something and can't because my arm is stuck at my side and wont move; when I move too fast and feel the damming effects; when I am treated like a burden rather than a whole person..."no you can't go because what if you get sick I wont have time to take care of you"; when it's slippery outside and I can't walk by myself and need help...
I could go on and on but I do my best to have less of those days...it is mostly the choice I make not to be 'down' but sometime as human I have to give myself that release and feel sorry for myself and then make the big effort and the choice to get back on track and not to lose hope.

I work very hard every single day to feel normal, but I know the other "good old days' are behind me .... the best is yet to come...it's my choice... to be grateful and make the best of every single day!  

Illness WILL change us... But we can choose HOW it changes us. Will you be intentional about the changes and have them be for the better? Or will they rule you? If this resonates with you today be sure to share. -Lisa

--Invisiable Illness Awareness Week FB Post 

Migraine Attacks Increase Following Stress “Let-Down”

New Research Published in Neurology Explores Impact of Stress Reduction on Migraine Attacks 

NEW YORK (March 26, 2014) – Migraine sufferers who experienced reduced stress from one day to the next are at significantly increased risk of migraine onset on the subsequent day, according to a new study conducted by researchers at the Montefiore Headache Center and Albert Einstein College of Medicine at Yeshiva University. Stress has long been believed to be a common headache trigger. In this study, researchers found that relaxation following heightened stress was an even more significant trigger for migraine attacks. Findings may aid in recommending preventive treatments and behavioral interventions. The study was published online today in Neurology^®, the medical journal of the American Academy of Neurology. 

Migraine is a chronic condition that affects approximately 38 million Americans. To examine headache triggers, investigators at the Montefiore Headache Center and Einstein conducted a three month electronic daily diary study which captured 2,011 diary records and 110 eligible migraine attacks in 17 participants. The study compared levels of stress and reduction in stress as predictors of headache. 

“This study demonstrates a striking association between reduction in perceived stress and the occurrence of migraine headaches,” said study lead author Richard B. Lipton, M.D., director, Montefiore Headache Center, professor and vice chair of neurology and the Edwin S. Lowe Chair in Neurology, Einstein. “Results were strongest during the first six hours where decline in stress was associated with a nearly five-fold increased risk of migraine onset. The hormone cortisol, which rises during times of stress and reduces pain, may contribute to the triggering of headache during periods of relaxation.” 

To continue reading: http://www.montefiore.org/body.cfm?id=1738&action=detail&ref=1128

From The March 18, 2014 Facebook post of Conquer Chiari Research Center

Today in the lab we are making 3D printed models of the spinal cord and brain (cerebellum). These models will be flown to a medical center in Germany next week to help us develop and test a new MRI sequence for 3D CSF flow measurement in Chiari patients. This type of MRI measurement has potential to provide the most detail about CSF motion in Chiari patients. Sincere thanks to American Syringomyelia & Chiari Alliance Project for funding this groundbreaking research.

Olympian: Brain disorder made me stronger By Julia Clukey, Special to CNN

Editor's note: In The Human Factor, we profile survivors who have overcome the odds. Confronting a life obstacle -- injury, illness or other hardship -- they tapped their inner strength and found resilience they didn't know they possessed. This week we meet Julia Clukey, who made the 2010 U.S. Olympic team in luge and is the first alternate for the 2014 team in Sochi. Off the ice, she's faced many challenges, including surviving brain surgery.

(CNN) -- When I was first diagnosed with Arnold-Chiari malformation-- a brain disorder involving structural defects -- I was shocked.

After learning more about it, and then after successful surgery in 2011, I realized that I could emerge a stronger person, both mentally and physically.

Today I am able to continue to compete at the highest level in the sport of luge and continue to live life to the fullest. I remain committed to my sport as well as to sharing my story about overcoming challenges.

During my surgery, and in times of adversity, the most important thing for me has been the support of my awesome family and friends.

I had a new outlook on the sport when I returned to competition in 2012. While I knew my ACM was never going to be gone completely, I was healthier than I had ever been and ready to see what I could do as an athlete, free of my symptoms.

Read more here:http://www.cnn.com/2014/01/15/health/human-factor-clukey/index.html