I blog》 that does not make me a “blogger” ☆multiple sclerosis☆

I really enjoy writing my thoughts and experiences with you all. But I am not a “blogger”. I was diagnosed with multiple sclerosis in 2010. I had just given birth to to two children within 18 months of each other. My baby girl was only 8 months the first night I remember having vivid symptoms. It was the Sunday of Black Friday. Family had just been to the house and celebrated Thanksgiving. My husband, daughters and I left for Charlotte, North Carolina from Galax, Virginia to look for a house. I had missed Charlotte and desired to be back.

When we left out early  that Friday morning, I left my house one way but when we came back on Sunday evening, I was different. I had told my husband that my legs felt funny, heavy even.  I could tell by the look on his face that he was concerned. For we had already had friends and family who had a fight with multiple sclerosis. Some loved ones quite close to us. He said to me, “Alright baby I’m going to get you some Aleve you go and get ready for a bath I’ll run your water. Maybe that will make you feel better.”

I must say my legs have never felt the same since that night. That night marked the beginning of the rest of our lives.

I don’t know if I’ve ever really introduced myself before. I do feel like I have a purpose in my story. That would make me “what I” call a Multiple Sclerosis Warrior Advocate. I choose to share my story. Although, I don’t know how I expect to do that when at the same time I’m a little nervous about being the “face” of Step For Me. Because it really isn’t about me. It really is about you. I want to help you, hence the Title “Step For Me”. I do want to be the voice for you and let the world know that we need help. We need friends, family, we need the public to understand how we live. The difference in our story is we weren’t Born This Way. So at times it can get overwhelming remembering how we used to be and how now we can’t be. It’s hard. It’s a very difficult life. I choose to use it for my good. I choose to learn from our struggles and make a better me out of it all. I don’t know, I guess I try to be strong when others can’t be. And with the God I serve, I know I can be! 

I do want the small amount of readers I think I may have to give me feedback. I am trying to build something for you. I need your input. The reason I want you to understand that I am not a blogger is when you don’t see me blog for a day or two (okay let’s be real sometimes a week) doesn’t mean that I’m being lazy or that I had forgotten about you. I’m actually working on other things for you. Keep in mind I am a wife and a mother of three in the house. Remember I am physically slow. It takes me a long time just to get household things done. I am trying to manage an Instagram page and 2 to 3 Facebook pages Twitter,…Plan events, remind you that I’m available, all while designing programs to make our lives better. I could use your help! We have a Facebook Chat page called. Friends who like Step For Me. I invite you all to that page.

There are some things I would like to get done and that is the best way to get your feet back. Chat, ask questions, involve you. I felt with my diagnosis that there were some things I needed that was missing. I did wonder if there was anyone else who felt the same way. For instance in the beginning of my diagnosis we tried to figure out the best things for us, you know the best course of action. At the time, I had a prescription for Solu-Medrol but I didn’t have the funds to administer the drug. I looked and I searched. I found a place that had funding to help me administer Solu-Medrol. This is what motivated me. Because I didn’t have cancer and my disease was multiple sclerosis. They couldn’t help me. That made me angry that made me so upset because I felt victimized. I was a mother and all I was doing was trying to get help to get one foot in front of the other to help raise my children. It got to the point that my doctors wouldn’t even give me steroids (pill form) anymore. So I was stuck. Stuck and angry, angry and stuck, stuck and trapped, trapped and stuck….there was no way out. I felt like my children were being punished, but what about my kids. No one seemed to care. No one seemed to care about my husband. He was a truck driver. We’re actually owned a business at the time of my diagnosis. Are you kidding me what are we going to do? So that’s why we’re here. We are here for you. So let’s make life better for all of us together.

❤ Desmine

 

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