Sunday, February 15, 2009

Nebraska Epilepsy Walk - March 28, 2009

I am posting some information from one of the other Nebraska volunteers who is heading up a Walk at the Crossroads Mall up in Omaha...

The National Walk for Epilepsy is taking place in Washington DC on March 28th. We have decided to make an "alternative route" here in Omaha. On March 28th from 9:30am - 11:00am inside Crossroads Mall (South Entrance) we will be holding the walk. Walkers registration begins at 9am. Look for the booth with purple and white balloons. This is an opportunity for you to be a part of a major event for Epilepsy right in your own community. Follow the registration below to join the Nebraska team and we hope to see you there.

I have registered a team for Nebraska called Nebraskan's Advocating for Epilepsy.
1. Go to the Epilepsy Foundation Walk Website
2. To the left, click "Find a Participant/Team
3. Click a team look up and type in Nebraska
4. You will see our team pop up and select it.
5. Click my name Stacey Doty and my webpage pops up.
6. Under my picture you will see a box that says, Join Stacey's Team and click it.
7. When you do that, it will ask you to register.
8. Click that you want to be a Virtual Walker and then what you want your fundraising goal to be (it defaults to $250.00).
We have a team goal of $1,000
9. Click Next and complete the rest of the registration items. It will ask you to create an id and password.
This is because when you are done registering, it will take you to your own web page where you can add a picture, update the email addresses, ect.. you will also get a t-shirt to wear to the walk.

10. After you submit your registration fee (which goes towards your fundraising goal) you will want to get to your participation center and then your personal page.

11. In the middle of your personal page there is an underlined sentence asking if you want to edit your personal page. This is how you update your picture and change the message on your personal page. If you like what it says then great, but please update the first paragraph to take out the sentence that the walk is in Washington DC. Replace it with Crossroads Mall 9-11am. You can look and copy my webpage for details on the walk.

12. Once you have your web page updated, within your participation center, to the right, you have an email option. This is how you can get an email out to anyone and everyone to support your cause. The link direct to your web page will be within that email so they are supporting you directly but then ultimately it is also counted towards our team goal of $1,000 and forwarded onto the Epilepsy Foundation on behalf of Nebraska.

Please ask your family, friends, co workers, even you employer to sponsor your team. If they want to walk with us, even better! Read more!

High calcium...

Since my hospitalization in the Fall, I have continued to stay on a very low dose of Lamictal and have been doing fairly well. I was confused when I left the hospital because I felt like I had auras and things going on but yet some of those "episodes" did not record as seizures.

When I was having issues prior to the hospitalization I went to an endocrinologist because I initially thought that I was having seizures and auras based on whether I ate or didn't eat. Thinking it was a blood sugar issue that was setting them off, I thought I should get tested for that. During some routine blood tests it was discovered that my calcium level was high. Readings were 10.8 or 11.2 at times. I was told to take Vitamin D to try and get the calcium lower. Vitamin D helps to regulate calcium.

My calcium level has continued to climb. The doctors suspected a parathyroid tumor or adenoma. I had a nuclear scan called a sestamibi scan. This revealed a tumor on the lower left parathyroid.

Apparently high calcium can cause all kinds of odd symptoms, including some that are neurological in nature. I am hoping that the removal of this tumor will get rid of some of the odd feelings I have had and all of the achiness that I have felt. You would think with high calcium that your bones would be in great shape, but it's actually just the opposite. Your body is not absorbing calcium and calcium is not exiting your body either. If you are in this type of state for very long you can head down a path toward osteoporosis.

I had a dexascan done to check my bone density. I am osteopenia. Some of that is due to the parathyroid tumor and high calcium I am sure. The other part of the equation could be the anticonvulsants that I have been on for the past 11 years.

It's crazy how one thing leads to another and so on and so on.

Life is good in spite of it all. I was scheduled to have surgery tomorrow, but my son was hospitalized last week for Hepatitis A. We recently adopted him from Ethiopia. The doctors feel he may have gotten it in Ethiopia prior to his trip the the U.S. No one else in the house has been sick and we've all had shots for Hepatitis. But because shots cannot guarantee 100% immunity to the Hepatitis, my surgery has been postponed for up to 3 months.

Oh that's right... I said life is good in spite of it all, right? And it is. As frustrating as things seem at times, I feel very fortunate to have such a wonderful supportive family. And I have two beautiful little kids who I would do anything for. I need to be healthy so that I can live a long life with them and watch them grow into wonderful adults some day. Read more!