Hello everyone and welcome to my most important blog so far…. I have some big news about my recent neurology follow-up which, was on Tuesday August 28. For those of you who know me personally I know you are dying to here what happened and, instead of having to explain this 100 times here we go….
My results showed no current “active lesions,” but my MRI does show lesions that are apparently old. This means that the damage to my brain that has been done is permanent and we don’t know when it may happen again only that it wasn’t happening at the time of the MRI. My Neurologist said she is a specialist who only treats MS. She said that most of my symptoms are not MS related and I either have many other health condition’s as well, a differential diagnosis, basically something worse than MS is going on. My MS Neurologist at MGH said that I am so complex at such a young age that I need a team of Doctor’s and clinical trial’s.
I am already involved in a clinical research with a young woman who work’s for MGH and this project is for her dissertation for her Doctorate. The trial is for MS patients, and using guided meditation techniques to help our brain function a little better and to help with cognition, sleep etc…. Her opinion which, now makes complete sense, she said to me “maybe you have a disorder that hasn’t been discovered yet.” There are so many possibilities as to what condition’s I already have and other’s I may have. The rest of this blog is how I personally feel about all of this!
I haven’t been very healthy my whole life I believe anyway. At around age 16, I had a breast lump removed. Around age 18-19 I had a colonoscopy and was diagnosed with Chron’s disease and then undiagnosed. When I was a child I had such a weak stomach I couldn’t sit in the back seat of the car if their was cheese in it because, I would vomit. I blacked out or passed out pretty often, I threw up all the time, I caught everything, I could go on forever but I won’t. In 2011 while my life was finally on track, I worked at a Doctor’s office as a CMA, I loved my family, friends, my job and my life. Then optic neuritis hit me only in my right eye…this was the beginning of a very unexpected journey through hell.
I woke up one morning to get ready for work and I couldn’t get my eye’s to focus and I had blurry vision especially in my right eye. I thought nothing of it and went to work. While on my way there I lost vision in my right eye completely and it was extremely painful. I figured it would go away on its own and that it was nothing to worry about. About 2 week’s go by, and seeing how I work with Doctor’s they highly suggested I see an eye Dr. or the ER A.S.A.P. I went to my eye Doctor and they said they thought I had optic Neuritis and ordered my MRI which, proved I did have it. I found a Neurologist and was not diagnosed until 5 year’s later. I no longer see this Neurologist for many reason’s I’ll eventually get too. The MRI report said I had 2 separate area’s in the white matter of my brain that sowed demyelination as well as optic neuritis and that a diagnosis of MS is most likely. My Neuro. then said I had to wait for another “attack” to happen before he could diagnose me, without even offering any other test’s or a spinal tap. So I was forgotten for 5 years.
Within these 5 year’s I was diagnosed with: fibromyalgia, arthritis, degenerative disc disease, anxiety, depression, migraine’s, narcolepsy, questionable seizure or seizure like activity, ADD (had since I was a kid) and I had mono again in the mean time.
I moved on with my life within these 5 year’s and lost almost everyone I cared about and almost all of m friend’s. I went through unimaginable hell alone. I was called all kind’s names behind my back and to my face like; you’re a liar, you’re lazy, a hypochondriac, “it’s all in my head”, I’m just depressed, a drug addict (even though I don’t do drugs),it’s your own fault, you should eat and exercise more, I’m crazy etc….. Everyone I knew t this time called me every name in the book and brought me to feel so miserable, down to a level of non-existence. I felt like a worthless, use-less piece of nothing that didn’t deserve to be alive, it’s like being compared to a murderer. So even rougher day’s came I turned to drugs, the wrong friend’s, partying and drinking all the time, and not being me I got lost and nothing I did could make me feel better nor make my symptoms and health issue’s go away. I just wanted my life back and nothing more.
My psychiatrist put me on a leave of absence from work and, the day I came back I was fired after being harassed by the whole office and my ex- boss who had quit before I even left. My thing’s from my desk came back to me broken and my reputation in the medical field ruined. I was good at my job and I knew it, they knew it and this was the first time in my life I had ever been fired. Following this job, I was either let go or forced to quit every job I had within these 5 year’s. I worked at a chain restaurant for 10 year’s prior to all of this, so I know I can keep a job and I had no idea what was going on. After being let go from the Doctor’s office I went back to school for nursing and I had a new plan. Obtain my RN associate’s degree and also my liberal arts (just to have under my belt which I was so close to anyway), and become a hospice care nurse or work in social communications, and any area of the psychology field because, I want to help people, I always have, I and always will.
In October 2014 I was working at a convenience store and gas station down the street from my house just to have cash for gas and the small thing’s I need for myself. One fine day, while my boy-friend and I were filling out some paper work I suddenly couldn’t see close up at all, which was never a problem. Then I had episode’s of not being able to see at all and at night my eye’s would swell, turn bright red and they looked gel like it was very strange. So as history repeats itself, I called my eye Dr. and she could not believe that I wasn’t diagnosed with MS yet and told me was sending me to Boston. I went and stayed in Boston for my healthcare and because the NH healthcare system is such a joke to the point where I have been denied emergency care more times that I can remember and lied to by urgent care any times, I’ve been told by an MD that he just cannot figure out what’s wrong with me. I now rather suffer than go to the ER in NH and it’s so bad I can’t see myself working for these people, when I know most of them have absolutely no idea what they are doing nor do they care.
Five year’s is a long time to go through went I did and I would not wish this upon my worst enemy. I right back where I started “health” wise but, stronger than I ever have been before. I can’t believe I am saying this but, I know this “journey” happened for a reason as most do, I believe. The way I am now and forever looking at the last 5 year’s is; I won my battle and gained respect, confidence, self-love, independence, most of all I learned how strong I am one the reason for this is because, I believed in myself and listened to my body while trusting my instincts, I now know who my real friend’s are including family, I made the most amazing new friend’s and had the best (internet based) support group where every single person in it is original, caring, loving and understanding, if it wasn’t for them I honestly don’t know what could have happened. This is why I do not live with regret, and I take everything life give’s me as a lesson, and guidance to find what I didn’t know I needed. I am grateful for this not happy but, thing’s can always be worse so I consider myself very lucky!
My life has completely changed within 5 year’s, so much has happened in this time that I know was the hardest time in my life so far and, I will take everything from this to mold me into the better person I have become. I will take with me all these lesson’s as a gift for finding peace in my soul, true love in my heart, strong trusting intuition, and a different more understanding outlook on life and why I know my soul now shines. I no longer live in fear of death, my health situation, loss, to control my anger and emotions, speak my mind in honestly only, how to forgive and let the small thing’s go. Life is to short, goes by to fast, and so amazingly beautiful that I am going to take in every moment of every day and cherish it because, the one thing we can absolutely never control, take or give back, is time and time is my most prized possession and you want to be worth my time use it wisely because, if you don’t this was your a chance you’ll never have again.
So to live my new life motto, “if I’m gonna do it, I’m gonna it right” pertaining to life
A Few Other Motto’s I live By:
- ” The battle began the day we were born and so far I have won them all, because when a real warrior takes a fall, she always gets up because a real warrior never gives up”
- “When one door closes, another opens, I don’t need to know why because a warrior will never die”
- “Life is like a choose your own adventure book, except your stuck with the path you choose and you can’t go back to cheat one the page that came before”
- “Our story of life is similar to a book, every time you blink you’re turning a page, the chapter’s are when your at a different stage, the faster you read the faster you age”
I leave with you with what I call “words of Jenny wisdom:”
I have so much more to say but, we’ll save that for another day, stay safe, happy and most of all be positive and stay healthy. Let go of thing’s that have already let you go but you just haven’t realized it, be careful what you tell people and always watch your back, love yourself love and everything in between, life’s too short to always be mean, pay it forward and don’t be nice or smile if you don’t want to or can’t, show your emotions and be yourself and the right people who deserve your company will find you, stay strong and you will live long! Have fun in life don’t take be negative and try not to take thing’s so serious, but there’s nothing wrong with being a little mysterious.