Fighting MS~When it's not your disease but your mothers
The article you are about to read was not written by me, but rather by my oldest son, Caleb. He is 24 and also works in healthcare as an EMT. You have to understand, my son is a very quiet person. He normally does not open up to express feelings! He does know I am sharing this though ~ as it touched my heart. This is his perspective in his own words:
I am 24, I am battling a disease I am not diagnosed with. How you might ask? Well my mother battles MS and while she battles with her health issues, so do I.
Growing up, my mom was a super hero. She was so strong, worked so hard to provide for all four of us kids. I started getting ill at the age of 9 with pancreatitis. My mom would stay with me for days on end leaving me only long enough to walk down the hall to take a shower.She always made sure I was comfortable.
Now I am a grown man. I sit here and think about all she has done for me and the lessons she has shown me. From her I have learned compassion, forgiveness and the willingness to help others who are less fortunate.
My mom worked 30 years as a nurse, most of those years in the Emergency Room. Eventually she ended up managing in the ER. She loved her job and gave me the best advice. She told me to "find what you love to do and you will feel like you never worked a day in your life". Eventually, she would have to leave the job she loved in 2012 which was the hardest decision I think she ever made.
Fast forward to 2010. My healthy, strong mom woke up with dizziness and double vision. She of course ignored it and kept pushing on. Finally, she went to the doctor and had testing which showed she had MS. I had no idea what this meant, but I remember thinking this could not be happening to my mom. She was to young, to strong and to healthy. These are all questions that will never be answered.
My mom was referred to the Ohio State State University which has an MS specialty clinic and that is where she continues to get her care to this date. She failed on two different drugs meant to help prevent further progression Copaxone and Tysabri. She took the Tysabri even though she was positive for the JC antibody as part of a clinical research study which her physician was part of. She has one of the best physicians in the country and while I was skeptical, she trusts him and that is all that matters. Her doctor then decided to give her chemotherapy to try to wipe out her immune system. The dose of the chemo was lower than someone would take if they were being treated for cancer, but still it was scary. This is not a usual option, but for 6 months she went through it. Once it was over, she had an MRI. The MRI was the first one in 3 years that had no new lesions. Her physician put her back on Copaxone!
The damage that has been done is done. Here is my message for you. Cherish The ones you love. Keep relationships close and don't fight over nonsense. Always tke time to make everlasting memories with the ones you love, you never know what is in store for you or them tomorrow.
As your family, we are struggling with you. As you struggle, we struggle. We may not be able to offer more than love and support. Now it is my turn to take care of you Mom. I will be here with you every step of the way. You are still the strongest woman I know. I love you and thank you for all that you have done. My name is Caleb and I battle a disease I don't even have.
Do you ever feel like your feet and ankles are burning on the inside but cold to the touch?