HOW AND WHEN DID YOU GET RSD?
I developed RSD after I had gotten into a series of car accidents. They knew immediately that I had it after the wreck I was in on January 6th, 2010. I've had RSD for over 3 years. I try to stay involved in the community, but have found it more difficult since I developed concurrent Primary-Progressive Multiple Sclerosis. Everything is hard. I just got out of the hospital a few days ago. I have been in and out of the hospital frequently with many things that the doctors can't even explain why I have them.
IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
RSD and MS have affected every aspect of my life. My father kicked me out on the street when I was too sick to even care for myself. Without Rob, I don't even know if I'd be alive right now. I find it extremely difficult to care for myself. I'm 23 and I draw SSDI and get Medicare (parts A, B, and D). I always pictured myself graduating from college or having kids, but I'm not sure I will accomplish either. I've been diagnosed as infertile. I was diagnosed as infertile several times, but I was 16 when I first got that diagnosis because I have many problems with my "baby machine". RSD has had some positive effects on my life also. I'm more patient now, after waiting so much to see doctors. I also have found a calling in helping others. I was very selfish in my past, but I have changed so much. I appreciate everything so much more; even just my life, in general.
DO YOU HAVE A GOOD SUPPORT SYSTEM?
Yes and no. Rob is great, but my family has not been so great. My doctor took my dad in his office and yelled at him for treating me the way he has. My family and I have made positive strides, but I find it hard to forget people who have created struggles for me when I was going through a lot.
DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Absolutely! I could not live my life without faith. In the end, I have to trust God's plan for me and my life.
HOW HAVE YOU RE-INVENTED YOURSELF?
Well, everything I do is harder, so I have to consolidate what I'm doing to conserve energy. I'm still finding my place in this world, but I just know God has a plan for me.
HAS ANYTHING GOOD COME FROM THIS TRIAL?
Yes. I met Rob and he has been everything to me that I wish I could be to him. He’s a great man and he’s so good to me. Also, I feel like this trial has changed me for the better.
WHAT THINGS DO YOU MISS THE MOST?
I miss not being in pain.
I miss junk food.
I miss not having to think about things before I do them.
I miss being able to follow through on plans.
I miss WORKING.
I miss college.
I miss a lot of things.
WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
"I don't have any reasons. I left them all behind. I'm in a New York state of mind. It was so easy living day by day. Out of touch with the rhythm and blues. But now I need a little give and take. The New York Times, the Daily News." -Billy Joel (my personal hero) wrote this song. It is so easy living day by day when you are happy and you have nothing holding you back. It's easy when there are no blues to write about. Things can change so fast, though. Your whole being can change so drastically. I don't think the public realizes how hard it is to find that place where you fit in after so much tragedy. When your whole life changes, you need a little give and take from the people around you to find where the new you fits. I have really struggled with it. No matter where you are in life, it's extremely hard to have so many changes happening so fast. The best advice I could give is…cherish the smiles; live for the laughter; have fun whenever you can; pick your battles; rejoice in your accomplishments; don't revel in your failures; don't forget God; most of all, don't forget who you are. Don't let yourself get lost in this hell we like to call RSD.
I developed RSD after I had gotten into a series of car accidents. They knew immediately that I had it after the wreck I was in on January 6th, 2010. I've had RSD for over 3 years. I try to stay involved in the community, but have found it more difficult since I developed concurrent Primary-Progressive Multiple Sclerosis. Everything is hard. I just got out of the hospital a few days ago. I have been in and out of the hospital frequently with many things that the doctors can't even explain why I have them.
IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
RSD and MS have affected every aspect of my life. My father kicked me out on the street when I was too sick to even care for myself. Without Rob, I don't even know if I'd be alive right now. I find it extremely difficult to care for myself. I'm 23 and I draw SSDI and get Medicare (parts A, B, and D). I always pictured myself graduating from college or having kids, but I'm not sure I will accomplish either. I've been diagnosed as infertile. I was diagnosed as infertile several times, but I was 16 when I first got that diagnosis because I have many problems with my "baby machine". RSD has had some positive effects on my life also. I'm more patient now, after waiting so much to see doctors. I also have found a calling in helping others. I was very selfish in my past, but I have changed so much. I appreciate everything so much more; even just my life, in general.
DO YOU HAVE A GOOD SUPPORT SYSTEM?
Yes and no. Rob is great, but my family has not been so great. My doctor took my dad in his office and yelled at him for treating me the way he has. My family and I have made positive strides, but I find it hard to forget people who have created struggles for me when I was going through a lot.
DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Absolutely! I could not live my life without faith. In the end, I have to trust God's plan for me and my life.
HOW HAVE YOU RE-INVENTED YOURSELF?
Well, everything I do is harder, so I have to consolidate what I'm doing to conserve energy. I'm still finding my place in this world, but I just know God has a plan for me.
HAS ANYTHING GOOD COME FROM THIS TRIAL?
Yes. I met Rob and he has been everything to me that I wish I could be to him. He’s a great man and he’s so good to me. Also, I feel like this trial has changed me for the better.
WHAT THINGS DO YOU MISS THE MOST?
I miss not being in pain.
I miss junk food.
I miss not having to think about things before I do them.
I miss being able to follow through on plans.
I miss WORKING.
I miss college.
I miss a lot of things.
WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
"I don't have any reasons. I left them all behind. I'm in a New York state of mind. It was so easy living day by day. Out of touch with the rhythm and blues. But now I need a little give and take. The New York Times, the Daily News." -Billy Joel (my personal hero) wrote this song. It is so easy living day by day when you are happy and you have nothing holding you back. It's easy when there are no blues to write about. Things can change so fast, though. Your whole being can change so drastically. I don't think the public realizes how hard it is to find that place where you fit in after so much tragedy. When your whole life changes, you need a little give and take from the people around you to find where the new you fits. I have really struggled with it. No matter where you are in life, it's extremely hard to have so many changes happening so fast. The best advice I could give is…cherish the smiles; live for the laughter; have fun whenever you can; pick your battles; rejoice in your accomplishments; don't revel in your failures; don't forget God; most of all, don't forget who you are. Don't let yourself get lost in this hell we like to call RSD.
No comments:
Post a Comment