Wednesday, March 24, 2010

The World of Information at Your Fingertips

I have been thinking a lot lately about how frequently I search the internet for information. It is absolutely, without a doubt, the most amazing resource. I love it's convenience, ease of use, plethora of information from all over the world. It has been the medium in which I have found information or received information to help Noah through his journey with epilepsy and with the Ketogenic Diet as well.

Last week I was diagnosed with Rheumatoid Arthritis. I felt very discouraged on Day 1 after finding out. On Day 2, I went immediately to my computer and the internet in order to learn as much as possible about, what was now, my disease. On Day 3, I was discouraged again because of the horrors that I saw on the net about RA. Day 4, I was stronger and more confident because I had continued my internet information search and found some very scholarly positive information about RA and it's possible impacts on my life.

So many memories came flooding back to me as I sat at the computer. Those first few months of working with Noah's epilepsy, the hours and hours and hours of research on-line to just try and understand epilepsy. I needed info to wrap my head around what was happening to him. I needed to find help, "a cure," details on medications and side affects...... You name it and I had searched for it! Anything to help my child fight this battle. The same situation occured just before beginning the Diet. Hours upon hours of research to help us make the decision to try the Ketogenic Diet.

Overall, I did end up with great information. But I really believe, that many of the people posting on the internet about the diseases we may have, about epilepsy, and especially about the anti-epileptic drugs, are the ones in the middle of it or sometimes in the worst of it. When people's lives are going great, diseases in remission, child no longer seizing, Diet questions answered and having success, then they have their lives back and they are off busily living life. Can I blame them? No way!!

But at the same time, it has made me more determined than ever to keep my blog going for ketogenics. Because, dangit...... there has to be more positive bloggers and websites to outweigh the negative experiences that are posted en mass!!! Our voices of "been there, struggled, bawled but now look at the possibilities" need to be heard loud and clear!

People in the clutches of epilepsy need to know that they CAN do this! They are awesome. They are not alone! The Diet is an option, a great option but if it doesn't work, many of us have been down that road too. We been down the anti-epileptic drug road with their unavoidable side affects. We've made and experienced the outcome of those difficult drug choices. We have mourned over our children's situation, we have fought the IEP School battles. We have shouldered the insensitive comments from family, neighbors and friends. We have received much love and support from those same people. We have been able to see the sun in the darkest of times. People in the horrible times need to have access to positive and hopeful information on the internet.

So..... I'm here to stay for awhile. I might only be able to post once a month, but my main message is that YOU CAN DO THIS! The Diet is manageable. It can be a miracle. Children with epilepsy and their families are special. We carry a heavy and stressful life load but we are unique. We fight these battles and live to smile and laugh for another day!

Stay positive everybody!
Share the good news too!
I love my Keto Kid!


Fawn said...

You're so right, Cathy! I am also guilty of not blogging as much about keto and epilepsy now that Jade is so much better, at least not overtly. It's definitely a huge relief to be able to focus on other things in life!

Sorry to hear about your RA; I hope you find some way to manage the pain and keep it from progressing.

Holli said...

Hi Cathy, found your blog from the yahoo keto group. I think you are absolutely right, and thank you for continuing to blog even though your situation has improved. It helps me tremendously. We are about a month and a half into the diet. We've seen reduction, but my son still has 50-100 seizures daily. Can you believe that's a reduction? Anyway, this is the first time I've actually felt good about his treatment -after the nine or so meds we've already tried. It's because of moms like you that I have these optimistic resources and first hand info available to me.

Cathy said...

Hi Holly,

I'm so relieved his seizures are down! But still at 50-100 per day is mortifying! I don't know how you hold up. But you will & this diet will help. The tweaking can take months and months. It took us 4 months to see ANY changes at all! Hang in. The Keto Yahoo group is awesome and can be a big support. I'm super glad you found my blog. Hope it helps.


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