Thursday, March 19, 2015

Raising MS Awareness with The Modified Dolls

This month I am being featured on The Modified Dolls website for raising MS Awareness! March is MS Awareness month and portions of my Q&A with them is being posted all month on their Facebook page.

Here is an overview of The Modified Dolls. It is a 501(c)(3) charitable organization based in Illinois. They have chapters and are building chapters all over the world. The goal of The Modified Dolls and their chapters is to erase the negative stereotypes associated with modified women by doing charity work. They provide fundraising, volunteerism and awareness to preselected Charities of the Month as well as other organizations selected by individual chapters. They are the different making a difference!

TMD is an organization made up of warmhearted and beautifully modified women, are in the business of breaking down negative stereotypes against women who choose to express themselves through body art. In an effort to change the views of those who believe modified women hold lesser morals, members of our organization hold themselves to higher standards. In addition to having careers, caring for families, and/or getting an education, their members give their time to fundraise and volunteer for charities to help those in need and to make the statement that modified women are much more than their skin.

The Modified Dolls Central Organization is located in Illinois.  They facilitate and serve chapters all over the world and encourage members to build new chapters.  They are a membership organization run by ten Officers and Directors who work on a strictly volunteer basis
The Modified Dolls supports a different Charity each month. Each year they hand pick twelve Charities we believe serve communities, individuals, and animals in a way that is productive and meaningful.  They spread the word, encourage giving, hold fundraisers, and volunteer to make a difference for each organization. In addition, their individual chapters often select local Charities to support.

And this month it's the National MS Society! I am so thrilled to spread the word! My friend is a member and asked to me to participate, which I jumped at the chance!

Here is the Q&A I did earlier this month.

1. What is multiple sclerosis? How long have you been battling- when were you diagnosed?
Multiple Sclerosis is thought to be an autoimmune disease that affects the brain and spinal cord. There are few types of MS: Relapse-Remitting, Primary-Progressive and Secondary Progressive are most common. I was diagnosed with RRMS in July 2006 after experiencing numbness and tingling that started in my feet and quickly spread up to my torso and hands. I also experience the ironically named "MS Hug."

2. Who gets MS? Does age or race matter at all?
Anyone can get MS, however it most likely to be diagnosed between the ages of roughly 20-40. Women are more likely to be diagnosed than men. These days, people are getting diagnosed younger and younger and there are now many children who have been diagnosed with pediatric MS.

3. What are the typical symptoms of MS? And what are your personal symptoms?
Typical symptoms of MS are fatigue, numbness/tingling, vision problems, balance and walking problems, bladder control problems, sexual dysfunction and weakness. These are certainly not all of the symptoms that can be experienced, but this gives you an idea of the wide variety. Everyone with MS experiences their own group of symptoms that can change at any time. No two MSers have the same MS. For me, the symptoms I most struggle with are headaches/migraines, weakness, tingling, balance and fatigue, which can be the most challenging as I am working full time.

4. Does MS always cause paralysis?
Absolutely not! Years ago when someone would be diagnosed with MS, it wasn't uncommon that they were told that they would be wheelchair bound. Over the last decade or so there has been so much research that neurologists now know this is not the case. Of course, everyone's MS is different, but I think it is unlikely for most MSers, especially those who have been diagnosed with Relapsing -Remitting MS to be wheelchair bound for life.

5. What medications and treatments are available? What type of treatments do you experience personally?
When I was diagnosed there were only injectable medications to help slow the progression of the disease. There is no cure for MS. Now, there are many new medications offered, some of them are oral medications too. In the past 21 years, from 1993 to 2014, the world went from zero disease-modifying drugs for multiple sclerosis to twelve! Research is definitely going in the right direction! After being diagnosed I started on a once a week intramuscular injection. I was on this medication for a year and a half. It was quite challenging for me because I quickly learned I have a fear of needles, especially one that was 2 inches long! Though, I was quite surprised by this, because I have a few tattoos and have had shots before, but this was something totally different. I was unable to do the injection myself due to my anxiety, I was barely even able to look at the needle! Luckily, my husband was able to give the injections for the full time I was on it. Currently I am on a once a month infusion and have been on it heading for 7 years this summer. This was the right choice for me because I no longer had to worry about getting a shot, but more importantly, this medication has helped control my MS. I once read this quote and like to live by these words: "I may have MS, but MS does not have me!"

If you would like to learn more about The Modified Dolls, please check out their website: