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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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

THIS IS THE REAL ME SO TAKE ME AS I AM

THIS IS THE REAL ME SO TAKE ME AS I AM

CONTENT: THIS BLOG IS BASED ON MY LIFE EXPERIENCES ONLY. THIS IS ANOTHER JOURNAL TO ME I WANT TO SHARE FOR THOSE WHO MAY NEED TO KNOW THEY’RE NOT ALONE!

 I feel like is being sucked inside my body. My neck has large greenish bluish spots now looks like blood inside. So…I  figured I would write instead of crying myself to sleep. No, I’m not weak, yes at the moment, but I’m also angry and let down. My PCP is awesome, my ONLY neurologist now is in another state until I find a local one also, I’ve gone to urgent care and the ER and they do NOTHING. I need an IV of steroids for about 5 days probably and that’s given for relapses IT’S NEVER EVEN BEEN OFFERED TO ME!!!! Every attack, illness, pain etc…they have made me suffer through and it sucks bad! I’m a mother of 2 a (basically) wife, a student, a best friend and I can’t do anything right now because I’m STUCK! I can’t work, I can’t run, walk far, drive sometimes, I’m dizzy. I just want my life back. The saddest part is that I NEED to adjust to my new life and so far I’m doing pretty friggen good. That’s one thing I AM PROUD OF.  It’s my kid’s my hubby, family and friends I worry about because I can’t do the same things I used to anymore. I hate to have to say sorry I can’t tonight, Mommy can’t go the beach today I’m to sick and to hot etc… It hurts to know I’ve let my loved one’s down without having a choice.

So this is what I have decided to do to try to adjust. I do what I love which is write and help people, I find a way to be able to play with my kid’s in a way that’s ok and comfortable for everyone and I try to stay away from stress which is almost impossible but, I try. I try to live by the motto that “everything happens for a GOOD reason”, and embrace your qualities all of them through health and illness.. I want to be a freelance writer or do well with the book series I’m starting definitely something with writing. I finally see now how strong I am and I can show my kid’s that no matter what cards your dealt in life there’s a way you can always win without cheating. BE YOURSELF AND SHOW EVERYONE! To quote my favorite artist of all time, “life’s rough so you gotta get tough”—-Johnny Cash.  I also learned to lived like “live every day like it’s your last, but still plan for the future, and they call the past the past for a reason, it’s over and behind you”.

People tell me how much I’ve changed since my diagnosis and I have…for the better! I volunteer, I’m a “MS Activist” with the Multiple Sclerosis Society”, and I just got an offer to have my poem publish in the “Momentum” MS Magazine. That is honestly a dream come true and since I was a kid I have wanted to write a book and now I just started my book series.

Life likes to knock you down and does everyone you because, they feel they need to prove that they’re better than you. If that’s the most important thing in your life, trying to be better than everyone you know than have fun cause I have nothing to prove and I know who I am.

bob marley quoteMS book quote

I know I started to write about how miserable I am but if my misery can cause someone, anyone, any kind of happiness then I did my job. If not than I guess at the moment I broke down and we all do that sometimes, it’s healthy actually. I know how to express myself and I DO. I’ll leave you with this your all amazing unique individuals, embrace it! EMBRACE IT ALL! MAKE ANY NEGATIVE A POSTIVE! It’s all possible, I promise and I don’t break promises  😉   It won’t be easy but life isn’t meant to be easy then we’d ALL BE BORED! Until next time, stay safe, help a stranger. most importantly HELP YOURDELF and PAY IT FORWARD!

ONE LOVE,

 ♥ Jenny  ♥

Bet You Haven’t Heard This Come Out Of My Mouth

Content Maybe A Little Extreme

Hi everyone sorry it’s been a while since my last blog I’ve had a lot going on. I hope all is well with everyone. this blog may be like no other I have written before. I’ve had a really rough time lately and I’ve had enough! I’m sick, I’m really sick I know this more now than I did before. I’m having a relapse right now that’s why this is so hard and honestly it’s getting REAL now. I’m usually always very positive, happy, and laid back. At the moment I’m far from it. Because, you know this is what MS does to you. One day I’m ok and I’m me, myself and, the next I’m a miserable, emotional, confused horrible b**** to the point where I don’t want to be around me. I hate that I can’t work right now and put my part in with my family. I hate having to take breaks, naps, not having any energy, being sick, having infections that won’t go away, being in constant pain I could go on forever. I hate it when I shake and can’t control my body and when I can’t walk straight and drop everything.

So…right now my lymph nodes are infected and big on the left side of my neck and its getting worse. I tried prednisone, an antibiotic and had an ultrasound of my neck. Nothing worked just got worse. I have to see a ENT Dr. now, it never ends and never will. I should be in the hospital with an IV of steroids for about 5 days. I went to the ER and they did absolutely nothing! So I guess I’m on my own and we’ll take one day at a time cause that’s the only choice I have. I am going to call me Neurologist here and see if he’ll see me because of this.

I’m falling behind in school cause I’m sick and exhausted all the time. I always feel like I want to puke or pass out I’m so dizzy. I honestly feel like such a burden and I honestly try so hard that nobody can even tell I lost most of my friends and some of my closest family members. I could be in the hospital right now and they wouldn’t even know or probably care. HONESTLY!!! It sucks but, I’m over it I have my boyfriend, kid’s, family and the few GOOD friends I have left. Those old one’s just made me physically ill and I couldn’t take it. Some people just don’t understand I DIDN’T ASK FOR THIS NONE OF US MS WARRIORS DID! We deal with it every day all day and will for the rest of our lives so why are you so worried or care so much about whether we’re “faking” or “lazy”, ok that’s why I have 2 degree’s and I’m still in school cause I “planned” on this right? I would never ditch a good friend or give up on a close family member but hey that’s just me everyone is different right.

I’m extremely thankful for the awesome supportive friends and family I have now. I’ve got closer with some great friends and family and I’ve made and met some amazing new one’s! Know this though us “MS Warriors”, we support each other like something I didn’t even know existed. It still amazes me and it’s great!

I am happy to say that I am finally me again A BETTER ME! My kid’s and the love of my life are happy and health and my family too and that’s all I need to be happy. Clearly, I have rough day’s like the past 2 weeks, “but this to shall pass”. until next time keep it real and love your family and be a good friends because what if it were the other way around? Are you to close minded to even try to put yourself in that situation? I hope not and if so….may karma have mercy on you!

One love,

Jenny

ms dream

Something Special For All Of Us

Something Special For All Of Us

Hey everyone! I hope everything is good and your all in good health!

Just a quick update on how thing’s are going. So…I’m currently not taking any medications for my M.S. for a few reasons. I had an allergic reaction to Copaxone and it made me miserable, I am thinking about staying off the meds until my next MRI in August. My neurologist ( I now have 4), wants me to try Aubagio which is a pill that’s been around for about three years. I don’t know what to do ahhhh! I’ve gone through almost 4 years of tests and now I’m having more done, some repeated and new diagnoses’ to add to the list.  So probley about 3 more years of tests and maybe I’ll know what else is wrong with me. Honestly, I’m over it and, starting recently I don’t even care to know anymore. I’m disgusted with everything and a lot of people to tell you the honest to God truth.

Please watch these amazing survivors stories who have MS!!!

 

There’s something I want to share and it’s very personal, emotional and it’s been on my “bucket list”, for as long as I can remember. I’m graduating from school this month. YAY!! After, I want to start writing my book (one of them). This first specific one, I can’t say to much because of plagiarisms, is going to have to do with Multiple Sclerosis. I know what I want to do and I the purpose of this is the fact that I NEED YOU TO HELP ME! If anyone that’s reads this blog has a friend or family member that has an interesting story and would like to share (or clearly yourself) only personal with me PLEASE send me an e-mail or comment. I will not and wouldn’t ever share or tell anyone’s story it’s completely confidential and I’m not that type of person who would share people’s personal stories. I do actually have good intentions here! I have GOOD morals that I honestly go by! I can’t say much more so please don’t be afraid and let your and my own voice’s be heard and our stories be told in a true and honest nature. I believe everyone has their own unique stories about their journey’s, our rough roads, things we’ve done that we’re not proud of, good things we’ve done for ourselves and others. ANYONE can choose to remain anonyms, everyone can if they want! Ok no more unless you want to know more and I can privately explain my awesome ideas! I promise you’ll love them and you’ll be excited, I am. I can’t wait to hear from you! Stay strong!

One Love,

Jenny

Must watch other’s sharing their stories about living with a disease.

A Poem By Me: My Never Ending Battle

Four years ago is when you came,

Now I’m sure life will never be the same,

I feel like I’m slowly dying,

Every time you’re here I always find myself crying,

For the short time you do go away,

I slowly begin to feel better every day,

I beg and wish you to not come back,

I don’t know what will happen after another attack,

I can’t describe in words how and what I feel,

Suffering in pain and pretending its no big deal,

As I begin to smell my own fear,

Is when I know your almost here,

Hoping when you arrive,

Tomorrow I’ll still feel alive,

Or maybe even forever paralyzed,

I know your an invisible demon that will haunt me inside forever,

And until this life is over,

Every day we will be together,

I never asked for this but I refuse to ask and never will why me,

I do know you’ll never set me free,

I learned and know now that I must live every day like it’s my last,

You helped me realize how time is going by to fast,

Today and every day I promise to vow,

That I will forever live in the now,

I will embrace this life long disease that had to be,

To help others just like me,

And to show them to set their souls free,

You may take my sight or deteriorate my brain,

Don’t expect me to just sit here and complain,

At any time you can take from me what you choose,

You must know that I will fight and I refuse to loose,

I tell myself to try not be scared,

I’ve experience a lot in a short time so now I’m prepared,

I knew it was you coming head on for me,

Even when everyone I knew was certain I was wrong,

But I knew it was you coming for me all along,

You have taken my health and so much more,

Know that I will win this war,

When this life is over and I am laid to rest,

I will know the struggle was worth it and I always did my best.

copyright 2015

Been A While!!!

Been A While!!!

It’s been a long time since I have been able to write in this blog and I’m excited to try again!! A quick update….My spinal tap was positive so I have MS and I have for the past 4 years, as I thought the whole time all these weird unexplainable things began to happen. I have a new neurologist who I love!! Thank God!!! I’m taking Copoxone injections right now which are 3 times a week. I’m pretty sure I’m allergic because the last 5 times I have huge welts that turn into bruises when they starts to go away, their itchy, red and still there and have been for about 2 weeks now. I was getting hives, swollen lips, rash, and now I feel worse. It’s made me sick, in more pain (especially) in my legs, migraines are back, etc…I could go on forever. I need more tests because my new Neuro. is very thorough which I love and she really knows what she’s talking about.

I try not to complain because I just think, it could be worse. It is pretty scary though knowing that one day I may wake up blind, not able to feel my legs wondering if I ever again, having paralyzed episodes while laying in bed (not sleeping), tremors…anyway.

I’m in my last semester at school and I’ll have 2 degrees after!! Hopefully, I can find something after, anything. Ok, I’ll write again soon thanks for reading!!

One Love

“If I’m gonna do it, I’m gonna do it right” (my new motto for life)

Jenny