What If?

What If?

285x285_MS_and_the_Brain_CNS_2

Hey everyone I hope all is well. What a day! Today I had two appointments at MGH; one with a comprehensive Neurologist who deals with nerve pain, muscle, etc… and unfortunately I missed my second, because they were half an hour apart so I have to reschedule, but it was with a sleep disorder neurologist.

The Neurologist I saw today it going to do three tests. YAY more tests! He wants to do a skin biopsy, a EMG, and an AFT. He is checking my peripheral nervous system and my autonomic nervous system. Looking for many things for example; diabetes or pre-diabetes, sensory organs, blood vessels, and muscles. Then if he finds something he has to figure out what is causing this, the mysterious “underlying disease.” He also says, like my MS Neuro., that I am complex, and such a hard case I need a team of Doctor’s. So talk about a new journey, would this count? Just kidding…

I donated to the “Bio bank” today, for researchers conducting all different kinds of studies on neurology patients so I donated some blood. The great part, is that if they find anything extremely important, or something that is basically worth worrying about, they will call all the donators to ask if they would like to know. I may get lucky and find out my mystery disorder.

Regardless of my “other situations,” I still do have MS, and still not sure what kind. I made a comment today saying, “what if I was born with it or have had it a lot longer?” He said it’s possible and unknown most likely. It gets frustrating when you have basically, a mysterious disease or disorder that had to do with your brain, and not getting many answers because, “your case is complex.”

I clearly understand that I could be way worse off at the moment. There are horrible things happening all over the world all the time. A few of my family member’s are not doing very well at right now. Sometimes, I just need to get it out of my system, and be sick of wondering what the hell is going on, and I have children and a family to take care of.ms dream 

I just hate being “the sick one,” or “having to rest a lot,” it’s starts to get old, honestly. I am at the point where I just want to say screw it, and move on with my life and just see what happens. At this point, if I didn’t have children, fantastic family, boyfriend, and people that care about me, I would say screw it! Luckily, I do have all these great wonderful amazing people on my life that make it all worth it.

So I will keep on trucking along and hopefully someday this will all get situated, but until then bring on the tests. Maybe my blood is some kind of cure, or new found disease or disorder that will make history. That would be kind of cool as long as it is curable and not deadly. 😉

Never give up! Not on your-self, family, friends and not even strangers. You never know how things will turn out. What if?

One love,

Jenny

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To A new Journey

To A new Journey

I wanted to give a quick update about how the book is coming. I have started writing, that’s what I’ve been doing every night until around 3:30 a.m.. Living the “write life” I call it. I love it and it’s made me comes to terms with my “new” reality my new life and a new and improved Jenny!

What I mean by new and improved is; I know who I am, I act exactly like who I am, I don’t hide away at home anymore. I have excepted my new health situation as well as future circumstances.

The journey of learning how to deal, act, talk and think about me having MS is over….for now. WE don’t need to explain every aspect of our health and our lives to anyone, because why should we feel obligated to answer questions for other about us? Why must they ask? For something to talk about later with their friends, or maybe something new to post on your Facebook page so they look “cool,” and play “Facebook life,” as in my life is awesome and way better than your! Those ones you have to just not associate yourself with its not worth your time or mine.

good quote from P

 

 

So onto the new journey and I can’t wait its already started!!! I’m starting to write my first book for my  book series. I have dreamed of this since I was a child and now it is really happening. I have a fantastic co-author and a great team working extremely hard on this. I’ll just say it’s different, the books will be on a specific  different subject each time one is released.

I have always believed everything happens for a reason. A Professor I had in school said, ” everything happens for a good reason.” I tried making that my frame of thought, and it worked, it made me happier and it made me want more. I learned meditation for mindfulness and it works, it honestly helps and works. Anyway, if I didn’t have MS I wouldn’t have had this wonderful opportunity to turn a dream a young girl once had, into a reality. I most likely would be working in the wrong field, and I may have not wanted to continue my education, and obtain a third degree in a different field of interest I have always been in love with.

I am not saying I am happy I have MS, I’m saying I learned how to EMBRACE it! I have learned to make most of my negatives into positives and/or embrace the good and the bad areas of my life. We may have the same disease, career, we could even be identical twins, but we all walk our own paths. The greatest part is, we all will meet at the end of a conquered life. We come out survivors, which we always have been, NOT the victim’s. In my support groups we call ourselves, “MS Warriors,” for me it’s because; I have survived, I have became strong, found who I really am and how to show it, I fight my own battles and I will help you fight yours. I pride in myself, I love myself, and I love life because I always remind myself, it can always be worse look how far I have come already. I live in today and right now, the past is called the past for a reason, and tomorrow I’ll worry about tomorrow, today I will worry about now!

♥One Love♥

Jenny ♣¤

budda quote 2

Life As We It Know It

Life As We It Know It

Life, how can you explain life in your own words? I can explain my life but, how could I possibly explain yours? How could you explain mine? Multiple Sclerosis is similar here is my own example,  my online support group has around 4,000 members. I have never seen any of them argue, complain much at all, we ALL support each other in ways I didn’t think existed! I have learned so much, made fantastic new friends that I know we will stay friends forever. These are all amazing people, which honestly save each other’s lives every day, cheer each other up, support, care, and to love like another family. It’s an amazing feeling to know that you have so many wonderful people in your life who are always there for you.

Living with M.S. and being in a support group doesn’t mean we know exactly how everyone feels, and we can tell each other the answer’s or what to do to make a specific symptom go away. In this whole world we are all original, unique, and different including how our diseases and bodies work. I think the big question is what we do or talk about? If I am having a bad day, or a new symptom, if I’m nervous about an appointment, suggestions or advice basically anything. Say I asked a question, many different replies by other who have my best interest in their hearts, it’s amazing. It gave me a whole different perspective not only on M.S. but on life. I have learned to live with this unpredictable, incurable, disabling brain disease and so have many others. Your whole life changes so I decided embrace it while I can and adjust to my new life. I guess, what I am trying to say is having M.S. has made me stronger, wiser, more appreciative, and I personally have learned to love my-self no matter where life has taken me or which bump I’ve hit.

MS book quote

Life is only as we know it , life is only how we experience and view it by the card’s we’re dealt, the choices we make, and if we choose to learn from every lesson offered. Clearly, we will ALL make mistakes, but how else would be learn without acceptance of others how do we move on and whose shoulder do I have to cry on?

In the end I believe life is just how we know it. Nobody truly knows your personal thoughts, your real hopes and dreams etc…..  Use the love you have for your-self, your self-control, your love for others and the earth we live on together, try to forgive as much as you can, give what you can because a smile goes a long way, it has many times made my day.

beautiful woman chakra

PLEASE REMEMBER THIS IS ONLY WHAT I PERSONALLY HAVE DONE AND JUST A LITTLE ADVICE, ESPECIALLY TO THOSE WHO ARE READING THIS RIGHT NOW AND WHY YOU ARE READING THIS!!!

I love this Chakra picture because this woman looks peaceful, content, in the moment, she looks as if she is mindful. Guided meditation for mindfulness, is a meditation study for a clinical trial, which I was recently involved in, being written by a young woman who is doing this research for her dissertation for her Doctorate, and works in an amazing hospital. The study from my opinion, worked for me I can feel it, and after seeing my own personal results before and after, I was amazed in good way. A little trick I learned about life is not to over-think everything, and mindset + mindfulness =happiness and peace.

I am writing a book about living with Multiple Sclerosis, it will be all non-fiction real stories involving my co-author, friends, strangers etc…. I can’t say a lot, but this book will be epic and different, just like our own uniqueness.  It is pointed in the direction to help anyone who is trying to understand or learn more about Multiple Sclerosis. I will keep everyone updated about how it’s coming along and the publication date. I also have become an ordained minister so I can marry anyone who would like me to marry them. I know in the State of NH I can marry; gay, straight, re-new your vows. I can’t wait so if your from around here or know someone who is please feel free to send me an e-mail or comment.  I would be very happy to do it. The reason I became ordained is, long short; my mom’s fiancé became very seriously ill is has been moved to a fantastic hospital.  I thought worse case scenario I could marry them in the hospital if need be. If all goes well which, I have complete faith it will, I can still my mother to her fiancé with whom, she’s extremely happy. My father may some day get re-married, and I would love to do his ceremony as well for family, friends, and anyone basically. I love to see people happy, especially happy in love, I believe love is the best feeling in the world!

UNTIL NEXT TIME WARRIORS, STAY STRONG!!! THANKS FOR READING I HOPE YOU ENJOYED MY BLOG!

♥ONE LOVE♥

JENNY KISSES ♥

AFTER 5 YEAR’S OF WONDER, I NO LONGER WILL WANDER

AFTER 5 YEAR’S OF WONDER, I NO LONGER WILL WANDER
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.

♥One Love♥

Jenny

How Much Can You Really Handle?

How Much Can You Really Handle?

People don’t realize how strong all, who live with MS really are, in our mind, heart, body and soul. We deal with indescribable pain and sensations, not being able to remember anything, going to sleep every night not knowing if we’ll be able to FEEL our legs in the morning, I’m sure you know, US who don’t have MS, but if you don’t have it you’ll never know. Being turned down by urgent care many times where they lied to me saying that they don’t do xrays even though your nurse just told me and I’ve had them here before, the Dr. in an empty ER doesn’t even examine me and says I’m sorry your in pain here’s some pain medication, not knowing I don’t want them because they won’t help I want the I.V. of steroids for 3-5 days. He tells me to call my Dr Monday. I call who is NOW my recent Neurologist and he REFUSED to see me on an emergency basis and says I don’t think it’s MS related without examining me. That’s just a couple horrible recent issues with the health-care system in New Hampshire.  I
got lucky and got a second opinion and now I have 4 amazing Neurologists, in different departments at MGH one of the best hospitals in the world. My MS neurologist travels the world all the time saving others. I had an MRI in the beginning of July and my next appointment was in October and she changed it until tomorrow and moved all her patient’s around because she wants to tell me in person about my MRI. I have so many neurologists because she believes I definitely have something else going on and I’m seeing a specialist in tissue and muscle diseases and nerve pain. I’m only 30 and I so many illnesses that either get worse over time or never go away. I had a breast lump removed at the age of 16, and A colonoscopy at age 19, and diagnosed with multiple sclerosis at age 30, and have had it all ready for 4 years, degenerative disc disease, fibro my algia, ADD, and more. I’ve never been very healthy unfortunately.

Some of the good people who live with someone may understand but, still you’ll never really know. I’m having a flare right now, caused by immense stress which was caused, from a loved one, which made lesions grow in my brain, a lot of us have been dumped by our spouses, family friends etc…. and still we fight every day with a smile anyway. We know it can always be worse and other’s never even think for a minute about the possibilities that one day this could happen to them, OR anything but, whose going to help them? Who would they go crawling back too? ? A true warrior shows all and never gives up their battle, a coward runs from what they don’t know and can’t see not once having to fight in a real battle, what happens when there’s nowhere left to run? What happens when the battle is with yourself?

So tomorrow I find out about what going on, and especially about my recent MRI which nobody will tell me anything yet. I am having surgery Wednesday to be sterilized because of many reasons one being I’m not healthy enough to carry any children because my body hates me. I am having a flare through all of this and will be recovering from surgery and A flare at the same time. If I’m not strong then call it what you want I call myself a warrior! We as a MS community, and my very supportive MS support group we all are warriors!!!

One Love,
Jenny

¤ONE LOVE¤ ~JENNY~

I get it now and I’m going to be ok regardless of what my health issues may come to be I can’t change it. I’ve disappeared to figure out how to live my new life and should have the honor to be a good friend. I understand now that it’s me that’s changed not by choice, more of a life adjustment I guess. I’m at the point where I know I’m strong and no matter what the future may bring I’m ready to battle like a warrior because that’s what I am a life long warrior who will fight until theres nothing left to fight. My personality may have changed because life decided to kick my ass until I woke up and fought back. I love my life and I’ll fight for it until the day I die. I have the perfect little family a few good trust worthy loyal friends in which I’m extremely lucky to have. I’ve learned how to control my emotions and deal with reality. No matter what my destiny may be I will conquer, when the card’s are dealt you have to know how to play and beat it. Anyone who’s struggling with any illnesses or diseases you can do it and you already are without even realizing it. Stay strong and except your life because you only get one. For those who know people who are struggling, if you truly care just be there. If you can’t handle being with a ill person and leave them to rot like they never existed CONGRATULATIONS YOU JUST RUINED THE BEST LESSON YOU’LL EVER GET!!! I don’t want sympathy I just want a hug. ……keep on keeping on.
One Love,
Jenny

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What Would You Do?