Monday, August 30, 2010
Physically I used to be strong, at least much stronger than I am now. Last year I ran my second half marathon. This year I have not run since March and that was on a wing and a prayer. Last year I was able to juggle many different schedules, mine, James', and the girls'. This year I am dropping balls everywhere. Last year I took 4 pills a day. This year I take 15 and give myself daily injections.
I just had an MRI last Friday (an "urgent" one) after seeing my neurologist Thursday afternoon. We are going to have to look at changing my injections...to what I have no idea. Some of these drugs involve bigger needles ( side effects include flu like symptoms, headaches, muscle weakness, migraines and a slew of others). Some involve IV infusions monthly (with a risk of getting a rare virus that funny enough does exactly what it is supposed to, stop demyelination of the white matter in your brain and spinal cord. Only this is fast acting and will kill you). There is a new oral drug coming to the market hopefully next month (it has only been used in clinical trials (200-300 people involve vs. the 2.5 million world wide that have the disease) and has shown to, in some, cause skin cancer, heart problems and infections).
There are some people that are able to function as they always have with a relapse once or twice over a period of years. My life this year has had one stretch of 10 days (late spring) and a few (meaning 3-4) days where I felt "normal". There are some people that are truly crippled by this disease, in wheelchairs or even home and bed ridden.
While I am in the throws of this disease and managing my first year of officially being diagnosed with MS I REFUSE to let this disease beat me. I REFUSE to accept that this is the end of anything. I have HOPE that we will find a CURE. I have HOPE that my daughters will never have to worry about this disease attacking them. I have HOPE that I WILL run again. I have HOPE that I will be able to look into the sweet eyes of my girls and have an answer the questions "WHY DID YOU GET MS?" "WHEN ARE YOU NOT GOING TO HAVE IT ANYMORE?"
In two weeks we will be CELEBRATING Julia and Jenna's tenth and eighth birthdays in New Bern, NC. James has put together a team of six called "Go For Jo" to participate in the LARGEST bike ride in the country to support a charity. The MS Bike Ride in New Bern, NC holds shines a light of HOPE for funding new discoveries to the cause of this disease and then a CURE to end this once and for all. A HUGE thank you must go out to James along with Brian, Jeff, Dave, Matt and Mike (who is flying in for the ride) as they make up the team "Go For Jo ". Also a thank you to their families as they have taken time away from them to train, all in the name of supporting me
It is NOT TOO LATE to make a difference. If you are moved by my story and the 2.5 million world wide who have MS, I urge you to make a donation today. NO donation is too small. TOGETHER we WILL find a CURE. To make a donation cut and paste this link: http://main.nationalmssociety.org/site/TR?pg=team&fr_id=13428&team_id=213980 .
We are only $1160.00 away from our goal of $5000.00.
Posted by Jo Ann Ginkus Haskell at 11:36 AM