March 2014 I was diagnosed Multiple Sclerosis.
Disclosure: I am not sharing this to make anyone feel sorry for me. I do not feel sorry for me. Everything happens for a reason. My story is going to get dark before it gets better but this was the hand in life I was dealt. Because of the advancements that the National Multiple Sclerosis Society has made I am not that girl with MS, I am Ashley.
I moved from Reading, PA to Long Island, NY for my now Husband, Jezek. A month after moving, I had a head ache that nothing relieved for two weeks. Then I went completely blind in my left eye. It was sudden and out of no where. I freaked out and went to countless doctors trying to figure out what was going on. It came to a point where they officially diagnosed me with Optic Neuritis then dropped the bomb. This might be the first step prior to Multiple Sclerosis. This right here is where everyone jumps to that imagine in their mind where your whole body is deteriorated and your wheel chair bound in the near future. I tried to believe it was not possible but MRIs showed that there were two spots. I tried to justify those spots as anything else. I went into complete denial of it even being a possibility. The rest of 2013 was an emotional roller coaster and Jezek stood by my side for every moment of it. Summer of 2013 I started to slur my speech uncontrollably, my balance had become the worst it ever has been. I looked as if I was intoxicated. I had gone to an MS specialist who talked down to me as if I was to have known everything about MS. After countless MRIs and blood tests, and even a spinal tap there was nothing available to officially diagnosis me with MS and they chalked it up to a vitamin B deficiency. Despite this I found myself with unbelievable headaches that did not end for weeks straight.
This continued through the beginning of 2014. It got to a point, right before being officially diagnosed, that I went numb on the complete right side of my body and felt a deep pressure on the right side of my torso under my breast. As anyone would have, I freaked out. I went to my primary care doctor at the time (who I should have done a lot more research on) and he told me oh forget the numbness and we need to send you sometime next week to get you gallbladder checked out. I looked at him as if he had three heads. I couldn't feel the entire right side of my body to a point I could barley walk. I immediately called Jezek to come get me. It took every ounce of him not to go up to the office and rip that doctor a new one. We went straight to the Winthrop University Hospital where I was hospitalized for a week.
This is where my MS journey finds some true guidance. After being discharged I went to see a new MS neurologist named Dr. Malcolm Gottesman. The waiting room was horrible because it just hit me and there were so many patients that were in horrible conditions and I just sat there thinking this is my future. What kind of future is this. Am I selfish for putting Jezek through this? I'm broken, he should walk away. (He never did by the way. He is the strongest man I have ever met and I would not have been able to do any of this with out him.) I sat there in tears, wallowing in my own self pity until it was my turn to see the doctor. I met Dr. Gottesman and he was the kindest and most understanding doctor I have ever met. He held my hand through everything. He explained my options and how the advances in treatments have all but guaranteed I would still be able to have the life I have always wanted. His office helped me get set up on my choice of medication, Tecfidera. They even fought tooth and nail when my horrible insurance company denied almost all of my claims, including the hospital stay and refused to pay for any of my medication. Fighting with the insurance company is always going to be a significant stressor in my life, but I am not going to go into that right now.
I have been on medication since May 2014 and my most current MRI proves that it is truly working. Any lesions of the brain that I had shown on the previous MRIs have become dormant and minimized tremendously in size. I have regained full sight back in my left eye and I have no difficulties walking or speaking.
And on September 6th, 2014 I was able to walk down the aisle to the man of my dreams in 5 inch heels.
We moved back to Reading, Pa having family closer makes life significantly easier incase of a flair up and for emotional support.
Fast forward to today-
Before right now I felt a lot different towards having MS. The Pastor at my previous church took it upon himself to announce to the entire church (about 400 people) that I was diagnosed with MS, two days after I had just found out for myself. It was over whelming and now all these people who couldn't have cared to even know my name prior to this were coming up to me an apologizing. I felt as if I had lost my identity. I wasn't Ashley anymore I was that girl over there with MS. I was not comfortable in people knowing because they treated me differently.
Right now I don't want to say I have completely come to terms with it but honestly about 99.9999999%. It is still very emotional to really get into it in depth as I have right now but I am using my situation as an opportunity.
I am making it my mission to get as involved as possible with the MS world. I want people to understand MS and understand that I am not glass that is going to break so easily. I am going to be participating in the 2015 Muckfest MS 5k Mud Run in Philadelphia as the team captain of Keep sMyelin. We have raised almost $800. Which is pretty impressive for me because I thought it was going to be like pulling teeth to raise our initial goal of $200.
It is very important to me to give back to the National Multiple Sclerosis Society and to honor of all the support I was given by my loved ones who stood by my side through everything. I want to physically be able to finish this 5k. I want to prove to MS it can not stop me.