GETTING RESTLESS & HOPELESS…..

  • Hello world and all of you amazing people reading this right now! Unfortunately, yes I’m feeling more than restless, and hopeless for our whole health care system. Although, I did work in the healthcare field and nursing school was so close I was almost done. Now, I am here back to square one.
While researching for my book i came across some very interesting facts. Here are some i thought were mostly interesting:
  • 1873- M.S. is known as a disease
  • 1878-Myelin was discovered
  • 1928-oligodendrocytes were discovered
  • 1946 the National M.S. Society was founded by Sylvia Lawry
  • 1969- was the first study to prove there mat be a therapy or medication that may help make flare ups go away faster, now called “steroids”
  • 1960’s the TWO MAIN “THEORIES”, of how M.S. may come from WHICH, ARE STILL BEING RESEARCHED TODAY!!!!
I could go on and on and on…… that is what scares me. The new Neurologist I have which, is closer to home wants to put me on Tecfidera. This is the pill that has only been around since 2013 that is giving people PML ( progressive multifocal leukoencephalopathy ). This is a rare brain disease, caner which usually causes death pretty quick. It it said to come from the JC Virus (John Cunningham), which can be dormant is some people and you would never know it and it will also lower your white blood cells which clearly, lowers your immunity. If you test negative for the JC virus than they say you should be OK. NOPE!!!
  I am going to decline this medication and just not take any I think. The one medication I did try was Copaxone which, made me absolutely miserable and then I became allergic after I switched from the daily injections to the three times a week injections. Most people I know that have MS who don’t take medication for it and have before, feel like they’re at their best now. I think I’m not going to take my chances and take any medication, and not feel worse because, I will most likely get some kind of side effect most people do etc…. I don’t feel fantastic right now but, I could be a hell of a lot worse!!!! I will let nature take its course on this one but, I still have more work to do and more tests to be taken on goes the journey. The journey to see who can diagnosis me faster; “MYSELF VS.”HEALTH CARE SYSTEM”.
I hope everyone stays safe and takes care of themselves out there because, the only person you can really trust is yourself. Only YOU know how you feel, and it’s up to YOU to love yourself and U know the world needs you here.

ONE LOVE

JENNY

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WHEN IT’S OVER….

Hello my friends. I hope everyone has had a fantastic summer with many memories made, and plenty of sun! Us “Warriors”, most likely were fighting the “summer battle”, I call it. It consists of; unbearable heat intolerance, sweating, hiding from the sun, being sick etc… Unless your one of the lucky ones where you don’t suffer from hot/cold intolerance. It wasn’t a very “active” summer for me, just more Doctors appointments, tests and same old shit. I do have a few different updates……

jim morrison quote2The “new question”, my five Neurologist’s are asking is…..do I have small fiber peripheral neuropathy? I most definitely have MS, which is not “causing my symptoms”, Basically, they have narrowed it down to this:

  • I have RRMS, not currently active, or causing any issues
  • I am very unhealthy or ill, that I am complex to work with, and I need a team.
  • You have (so far):
    • ADD, degenerative disc disease with; bulging, slipped, herniated discs, and disc spurs throughout your whole spine.
    • arthritis, anxiety, panic attack syndrome, depression
    • visual disturbances, vertigo
    • narcolepsy or a REM/NON-REM sleep disorder
    • spinal stenosis
    • Relapse Remitting Multiple Sclerosis
Don’t forget about the new one, the new “possibility”, which can be caused by many different things. Diabetes is all over my family on both sides, and pre-diabetes, and also my glucose has been strange for a while now and this can cause small fiber neuropathy. Honestly, I don’t care anymore, I only 30 UNTIL SATURDAY!

I’m at the point in my life where I just want to be able to enjoy it! To not always have that thought, that “what if”, why do I feel this way today, consistently asking myself questions and answering them myself because nobody else can. Well I have a new plan!

This Doctor’s office in Concord and MGH are my last stops. If they can’t figure it out, then I guess it’s one of those things in life where “you’ll never know”. Sounds strange to think, I, me, can possibly live this way, but I have been to hell and back, and trust me when I say this, after asking question after question with no specific answer, getting opinion after opinion, state to state traveling, searching, I rather not even know anymore.  I have had a long journey already and dammit it is time, my time for the good parts! My time for the fun, not having to stay home all the time, running, jumping and playing with my kid’s while they still want to play with me. It’s my turn to REALLY LIVE, TO SHOW OFF WHO I REALLY AM AND WHAT I CAN REALLY DO!!!

wpid-fb_img_1441514234760.jpgSome advice for anyone who has or will go through all these “health questions, and what’s wrong with me”. If after five or six years the best Doctors in the world still can’t figure it out, move on with your life! Sometimes, things are better left unsaid, unanswered, and just so not worth our time. SO DO ME A FAVOR AND LIVE, PARTY, FALL IN LOVE, SPEND AS MUCH TIME AS POSSIBLE WITH YOUR FAMILY, AND MOST OF ALL LOVE YOUR-SELF AND DON’T EVER GIVE UP!!!

♥ONE LOVE♥

JENNY KISSES ⊗

¥‡∃⇔

WHEN IT IS OVER……… (THINK ABOUT IT) 😉

grateful dead3

Maybe I don’t want to know

   Hi everyone. I hope all is going well!

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Today I went to meet my new neurologist to get a third opinion. She is a really good doctor, I liked her a lot. She agreed with my neurologist at MGH. She said, yes I clearly have multiple sclerosis, but that is not what’s causing my symptoms right now.
    So there’s something else wrong and nobody can figure it out. I feel unless because I’ve studied and learned so much and MS and all the signs, symptoms, reading mri’s, differential diagnosis. I can think of a couple but I’m not the doctor. They both said the same thing, that what is wrong with me isn’t just combined into one or two diseases or disorders there’s a whole lot going on.
      I’m stumped!  So I guess I am now a research project. The question is, do I want to be? I thought when I got the multiple sclerosis diagnosis that it would be the end of the search and that I was right the whole time.
     I was right but not completely. Here’s what I’ve been diagnosed with so far throughout life:
– fibromyalgia
– MS
-Degenerative disc disease
-Spinal stenosis
-ADD
– narcolepsy
-Insomnia
-Irritable bowel syndrome (since I was in high school, I’ve been pooping blood very often. ) shhh
-Anxiety/ panic attacks
-Depression
-Slipped, bulging, herniated discs
-Inflamed lymph nodes, stop going on after two tries of antibiotics
– my vision changed a lot, especially my right eye since I had optic neuritis, I swear I’m going deaf
– I think myoclonus, which is similar to a seizure  but I guess it’s not one. I’ll be wide awake in bed watching T.V. not sleeping, and my body will like have tremors I can’t control my body movements, I’m fully alert, but I can speak at all! Sometimes it’s my head, my whole body and lasts for about 30 minutes -1 hour. I have my boyfriend laying next to me and I can’t even say call 911, nothing! It’s scary as hell!

  Those are some things that I have going on right now. MGH wants to study and research me, because I’m so complex, such a rare case and they want me to get a team of doctors. I believe I already have one there. I have a neuropthmologist, 2 MS neurologists, a comprehensive neurologist, a sleep Dr. Neurologist.
    I’m not angry more confused. I feel like I’m starting over again just when I thought I was good. I’m still deciding if I want to pursue this, and just see what happens or keep going to try and figure it out.
    Sorry it’s late,
I’ll post more soon,
Love you all,
ONE LOVE,
J

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ONE LOVE
JENNY KISSES :-*

I Don’t Know What To Do Anymore

good evening world. I feel kind of sad but also happy today. I guess you could say I’m confused. I don’t know what to do anymore, honestly. should I keep trying, looking, searching, and hoping for someone to figure me out? this feels like a nightmare a lot of times, although I don’t say it often, but we all break down once and a while so I think I’m allowed this one.
THERE’S SO MUCH BS GOING ON RIGHT NOW, I JUST DON’T KNOW WHERE TO GO, WHO TO TURN TO OR WHAT TO DO AT THIS MOMENT. Myself, I can trust and turn too!

I am honestly disgusted with the health-care system in general at the moment. I have five Neurologist’s at MGH, and they all tell me how complex I am, and how I’m such a hard case, and that I need a team of Doctor’s. That’s what you want to hear at age 30, right? Well the question I keep asking myself is; what do I do? Keep going and see if eventually someone figures me out, or take it day by day see what happens and stop trying to get my health situation figured out? I would honestly stop trying if I didn’t have such great kid’s, and a great family and a small group of friends. They are what keeps me going everyday, they are what inspires me. Without them my life be boring, and the only love I would have is the love for myself. I want to work so badly. I hate sitting at home, or running errands, and having the same consistent days. It feels like that movie “Groundhog Day”. I’m bored, irritated, and confused, Also, happy, content, and curious.

I found something interesting while doing my normal research, it is a hobby and interest of mine. Since we live in NH we kind of have to figure things out for ourselves, pretty sad right.  I came across glial cells and glialia. There are four different kinds. Their are numerous disorders and some related to these cells. After having MS for a while the cells repair themselves and the myelin to an extent of course. It is located in the white matter of the brain and is somewhat smaller than the typical MS lesion and these scares they cause are non specific to their location in the brain. My new neurologist who is looking for small fiber neuropathy in me as a possible underlying disease. I asked him if it were possible that I was born with MS or developed it as a child, and he said yes it’s very possible. Nobody thinks about these things when we’re kids, especially before the disease was common and they new nothing about it. I wonder how or if they can figure it out?  I also donated to the Biobank at MGH and if they find anything like cancer, or something that needs immediate attention they’ll contact me, otherwise they won’t. 

Ihave an appointment next week in Concord at a MS specialist clinic. So this will be my third opinion, so I guess go with the best out of three. Idk we’ll see. …

Staystrong and hold on! You got this!

ONE LOVE,

JENNY KISSES

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

FeaturedAFTER 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