My story is….I have had a lot of medical problems in my life so I felt that what I kept experiencing was just going to my normal. I was fatigued all the time, very moody because of this. I felt like I was losing my body and my life. I went to several doctors with extreme migraines and all the other symptoms I was having. So, I found a doctor in Franklin, TN who is a top notch Neurologist. After my 3 visit, with all kinds of test done, I was diagnosed with Multiple Sclerosis in August, 2011.
What a shock this was? I was just expecting like you suffer from Migraines or something of that nature. I have been on a roller coaster ever since I was diagnosed and I would like to get off now. I know that will never happen but could it at least slow down? I have been on three different types of medicine. I know there are ones that have been on so much more and been through so much more, I am just telling my perspective and my story.. I was on copaxone and that helped the brain matter and kept the lesions from getting infected or leaking but it was not controlling my body. I was having terrible muscle spasms, numbness, tingling, mood swings, you name it I was having it. I was relapsing every 3 to 4 months, taking IV Solumedrol treatments every six months, it was awful. I was going to the doctor every 2 to 4 months. And my doctor is 2 ½ hours from my home needless to say, so the doctor decides to put me into a research study.
Well, since your insurance company doesn’t want the doctor changing your medicines without out trying all this other stuff first I say, okay I am game whatever it is going to take to get this to slow down its aggression. We set up my first appointment for this and guess what, I couldn’t get into the program on that visit because my heart rate was out the roof. So we make another appointment for another month. During that month I have more test done. I go back and it was touch and go but I made it into the program on this visit, so I start Beta-Seron. WOW! Is all I can say about that. This was the worst medicine any person could take. Please tell me why on earth the insurance company would make a patient experience this is ridiculous. I know it affects everyone differently, but holy cow it made me so much worse.
So after two months the doctor says let’s try Gilenya, which is what our ultimate goal was from the beginning, was to get on this medicine. I have been on this medicine for a month now but I cannot tell any difference…YET. I can be walking and all the sudden feel like if I don’t sit down, I am going to fall down. My body goes numb all the sudden. Again, everything you can feel, I am feeling it. So let’s pray that it works in the long run.
That is my diagnosing story….
Here is my emotional story…
I am 43 years old and was told that I have had Multiple Sclerosis and have had this disease for decades of my life. Okay, so now what do I do with that. I want to be a warrior. I want to be a survivor. I want to be an advocate. I want to be a strong person. But how do you do all the above….. I feel lost, broken, in shambles, in disarray, everything a person can feel, I have felt it. I have lost friendships because they say I have “changed”. How can a person not change after being told you have a life altering disease?
I have changed I admit that but I want to live life to its fullest, that is what we are taught to do. I want to experience everything that I can while I can. What is wrong with that? I got a tattoo, so what? It means something to me so don’t judge me for that. I don’t need you to judge me on my actions. It is my life and I want to live it. I am so sick of people saying “Well, you don’t look sick?” Really…don’t you know looks are deceiving? I just want to be free.
Okay, people say I have changed but isn’t life about changes I have changed because of my past, my present and my future. Maybe I have changed because I am suppose to. Aren’t they suppose to accept us with our changes or not accept us at their choice. How can I not change with what I have been through, what I am going through and what I will go through? I am trying to make the changes for me that need to be made. I want my life to be different. I want to live it as if there is no tomorrow because we never know when or if it will come. I can put on the best show there is by appearing to be fine when I am not in the least. The façades need to go away because I am tired of putting on the fake face every day. I want to put on the body of armor for God and wear it and wear it with pride.
Now, here is how I feel right now and I have felt this for two years now. I want to stop living for other people. I have lived my life for the satisfaction of other people and what they want and not what I want. I want to change that I want to live for me and no one else except God. I want to live for his satisfaction only. I want to be what he created. I have lived a life that he did not create that I created and that is wrong and I know that now. So why can’t people see that. It has always been about others and I just want it to be about me for once. Just once in my lifetime about me and what makes me happy. I know my problem is that I am a very strong, determined and independent woman. But that is how I feel I should be. I don’t need anyone except God and don’t want to depend on anyone except him and myself.I feel that if I can shut everyone out right now then number one, I won’t continue to “hurt” them as they say, two, I won’t hurt myself. I am angry, mad, sad, have hatred, frustration….everything I have it in me and I don’t want it there.
I have so much pain in my soul that I feel it. My heart hurt from the pain and I want it to go away I want it to stop. But then again I want to be broken and lost. I want to feel the pain so I can feel something. I want to stop hurting those around me but I need them to understand and accept the changes I am making in my life. I want to be alone for the first time in my life I just want to be alone to find myself and understand myself and to know myself and what God wants me to be and do. The worst part is that I can’t even cry about it anymore because I have so much hatred that I have no tears left their all gone. I believe my physical pain is from my emotional pain. I hurt all the way to my core and to my soul so I know what that does.
I am not suicidal because I don’t believe in that and that makes you have a lost soul in the world to go out like that so that is not even an option our choice for me. I go to work because I HAVE to. I work because it takes me out of my world into another place that I don’t have to think about anything but my work. I read because it takes me to another world and I can get lost in that world. But I know that I am lost in this world. Again, I need to feel something so I just want to feel the pain I have. Other than that I don’t know that I feel anything else. I want an escape. I think if I just pack and take off that I will just drive until I stop wherever that may be. Anywhere but here. If I go I may never come back. I don’t want to turn around once I leave I want to escape what is here, what I am feeling, no looking back. It is in the past and we should never look back.
Okay, my life with my husband now. I know I love him with everything I have which may not be much right now. But the question I have is am I in love with him and I don’t know that answer. How does a person not know that answer? That makes me a terrible person doesn’t it. He is a wonderful man that is the truth and no one can say differently but that doesn’t make him a great husband. He is very closed off. He doesn’t communicate and never has but right now that is what I need. I need to someone to let me in and love me broken and lost and help me find my way back and accept me for whatever I am and accept the changes I have made. He has really shut down since I was diagnosed so here we go again I am dealing with a life changing matter in my life and I am dealing with alone again. Okay I am a big girl and I can handle but now comes the ultimate question we never should ask… WHY? Why me Lord? Have I lived my life in that much of a mistake that I have to pay for it my entire life? Was I really that much of a mistake? I know I have made mistakes and I will gladly admit to them but really!!
Now, with all that said where do I go from here. I am at a fork in the road so which path do I take better yet what path does God want me take. Is he waiting at the end when I get there?
That is my story…. Melissa Agent
Does anyone else in your family have MS?