Demyelinated not Destroyed

As my dedicated readers of my blog might have noticed, I’ve changed the background theme. I’ve lost a customized header but gained more room for pages, three columns that actually work the way they’re supposed to, and greater paragraph definition, making it easier to read. RSS and e-mail readers won’t notice the changes, of course.

Earlier today, I had a brainstorm. I was trying to figure out a posting schedule so my blog posts wouldn’t seem so random. I’ve come up with a very tentative schedule. As guest bloggers get assigned or I come across information that I feel needs to be posted right away, the schedule will be adapted to accommodate it. Here is the tentative schedule:

• Sunday - Inspiring stories of those living with demyelinating diseases or their loved ones.
• Monday - Living with CIDP: Experiences and thoughts of my personal journey with a demyelinating disease.
• Tuesday - Information on Western based medical treatments.
• Wednesday - Information on symptoms
• Thursday - Information on Alternative based medical treatments
• Friday - Research
• Saturday - Information on support groups, both online and off, for patients and caregivers. Reader support will also be given as needed through responding to questions or just giving emotional support. Readers can seek support through leaving comments or e-mailing me.

Another change is I have decided to highlight a different demyelinating disease each month. The first week of the month will be dedicated to getting information out about the highlighted disease. The topics discussed will be:

• Demyelinating Disease - Done much in the way of my “A little bit about CIDP ” post. It will provide basic information on the disease and provide links to where additional information can be found, if available.
• Charity Spotlight - A “review” of a charity that focuses on the demyelinating disease being spotlit for the month. This will be handled in the same way as my “Charity Spotlight: GBS-CIDP Foundation International ” post.
• Blog Review - A review of a blog about the demyelinating disease. The blog will also receive a permanent link in my blogroll.

As often as possible during the month, the weekly inspiring stories, information on treatments, symptoms, research, and support posts will be tailored in accordance with the demyelinating disease being highlighted.

So, now I put it to you, my wonderful readers: What do you think? Is this a good idea? Do you love it or do you hate it? Do you have a better one? Leave me a comment or e-mail to let me know! I’m always open to your feedback.

I have often said that Demyelinated not Destroyed exists for its readers. This blog is less about me and more about giving information, support, and hope to the thousands of people living with demyelinating diseases and their friends and loved ones.

To that end, I am presenting two writing opportunities to the readers of Demyelinated not Destroyed.

• Guest bloggers - Demyelinated not Destroyed is looking for guest bloggers. Here’s a sample of some of the people I’m looking for:
  • Caregivers - People who are caring for a person with a demyelinating disease. Obviously, caregivers have different needs than patients. Since I am living with a demyelinating disease, I may not be the best person to speak to the needs of caregivers. I’ll try my best to do so but I believe it would be best to have a guest blogger handle this aspect of information and support for Demyelinated not Destroyed readers.
  • Patients - People living with demyelinating diseases, other than CIDP, if possible. While the progression of each patient living with a demyelinating disease will be different, there are symptoms and progressions that tend to be common within the different diseases. For example, CIDP usually affects the legs first and is equally problematic on both sides while MS tends to affect one side of the body over the other. Also, different demyelinating diseases have different treatments. I have a lot of experience with IVIg and steroids but none with beta interferons.
  • Charity Volunteers - There are many different charities out there for the various demyelinating diseases. It’s hard for me to keep up with them all, although I do try. Anyone that is active within one of these charities that is willing to blog about various activities, donor drives, and events is more than welcome to become a guest blogger here. I can’t financially support all the different charities but I can provide a place to get the message out.

The amount of pay will be determined when individual guest bloggers are assigned. The time requirement is minimal at one post a month. If you’d like to post more, that’d be fine, too. For more information, click on the “Writers & Stories Wanted” tab at the top of this page.

• It’s Always Darkest Before the Dawn - It’s Always Darkest Before the Dawn is a book of stories from patients and caregivers of people living with neurological disorders with a heavy emphasis on demyelinating diseases that I am presently compiling. This is to be a book of information, support, and hope. I want it to be the kind of book where people who are presently struggling without a diagnosis or have been recently diagnosed can read it and gain strength from it. The stories could be about personal struggles and triumphs, advice, or just whatever inspires you and keeps you going when times get tough. I’m looking for people who haven’t yet received a diagnosis, recently diagnosed and undergoing treatment, have been living with their diseases for awhile, and caregivers of those who fit into all of the other categories. Basically, everyone is qualified to submit their story for publication.

Proceeds of It’s Always Darkest Before the Dawn will go to help cover the costs of treatment and assisted living devices for those living with demyelinating diseases. Only those who can prove they have a financial need for the assistance will qualify.

Anyone who submits a story and has it published will be credited in the book and receive a free copy once it’s released. Since the proceeds are benefiting those in need, any money paid to contributors is money that won’t be going to help cover the costs of treatment for those who need it. Submission guidelines can be found by clicking on the “Writers & Stories Wanted” tab at the top of this page.

Please feel free to forward these writing opportunities along to those who you think might be interested!

I have Chronic Inflammatory Demyelinating Polyneuropathy, or CIDP. It is the chronic form of Guillian-Barre Syndrome. Similar to Multiple Sclerosis, it’s an autoimmune disease that causes demyelination of the nerves, resulting in a whole host of neurological problems. It’s also a rare disease, affecting an estimated 1-2 people in 100,000, with few treatment options.

I was diagnosed with CIDP roughly two month ago. Two weeks before my 30th birthday, in fact. I’ve been having symptoms for over five years. Tingling, muscle spasms, muscle cramps, numbness, problems with balance, and weakness among other things had all become an increasingly constant part of my life as the years went on. I went through numerous tests and a handful of neurologists in my search for an answer of what was wrong with me.

When I finally received the long sought after diagnosis, it was like someone had lifted a weight from my shoulders then promptly socked me in the stomach with it. I had an answer but I also had a disease from which there is no cure, only treatments to try to stop and heal the damage being caused. My body had decided that it was its own worst enemy. Immune systems designed for good were causing harm. Once triggered, there was no going back to “normal”. CIDP is my new normal.

Since my diagnosis, I have done countless hours of research. In my research, I have discovered there are many neurological diseases that have similar symptoms and cause demyelinating of nerve endings. While each disease has its individual charities, research, and support groups, I haven’t been able to find much in the way of a “one stop shop” for information and support. It’s my intention to create such a spot with this blog.

Even though I have CIDP, I will be posting information on other neurological diseases like Multiple Sclerosis and the like in addition to CIDP. I will be posting information on research and treatment options for demyelinating diseases in the hope that people dealing with all neurological, nerve diseases will find it useful.

This will also be a place for support. We all have our good and bad days. Even loved ones and caregivers of people with these chronic diseases will find support here.

I will post about my experiences living with CIDP from time to time. It’s my hope that by being brutally honest about the ups and downs this disease causes will help ease the anxiety of others. One of the hardest things about living with a disease like CIDP is the sheer uncertainty of it. Because of the highly personal nature of these diseases, everyone’s prognosis will be different. Still, I think being able to see what my life is like will give peace to others, especially those who are newly diagnosed.

We didn’t choose to have these diseases but we can choose how we deal with them. Even when your body is weak, you can be strong in spirit. You may be demyelinated but you are not destroyed.