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

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Finding Truth

Finding Truth

CONTENT: THIS IS MY OWN PERSONAL STORY ABOUT HOW I LIVE WITH MULTIPLE SCLEROSIS, HOW I DEAL WITH IT, HOW EVERYTHING CHANGES DAILY. MOSTLY, THIS IS MY WAY OF LIFE. READ FOR GOOD INTENTION ONLY PLEASE!!!

good new quote     Hi everyone I hope all is well!  Summer is finally here I love the sun, being warm, being outside in nature, having my garden, basically everything but for us who have MS summer doesn’t like us at all. I’m half Venezuelan so, I’m technically made for warm weather unfortunately the other half (Irish) took over. Who really knows why we get MS but, statically data shows that people who live above the equator have higher populations of MS. I’m on the wrong continent maybe, if I move there it will magically go away. Think so? If so I’m pretty sure we would all live there right?

  

11159497_521350068019827_1472390253647539538_n     So like many others comes another summer and another “flare” or “relapse”. I went back and looked at my medical history and since 2011 every summer has been when I’m at my “unhealthy stage”, as I call it. I’m skinnier (won’t complain), sicker, have a flare or flare’s, exhausted, malnourished I could go on and on but you get it. My favorite time of year ruined by disease and illness, great. I know everyone who has MS is different, at a different stage, and basically in a different part of their lives. From what I’ve heard most are miserable this time of year while it supposed to be our extra time to spend with our children and families, being outside in nature, doing more active things etc… Instead I’m stuck inside doing home-work, being sick and exhausted, getting skinnier by the day I’ve 10 lb. already without trying I’ve been so sick and busy. I’m trying not to complain but more like vent and I say it how it is. I honestly love school, I mean I’ve been going forever it feels but, I love learning, having a profession, a passion for knowledge, making more money by spending it on student loans. I’m not sure if my profession is going to change or not though. I mean my life changes by the day which is so much harder than it sounds. I have 2 degrees and so close to being done with nursing (can’t apply to the program yet) but all I need is 2 classes and my clinicals and I would be an RN. It seems just stupid to stop now but, who wants to hire a RN whose health is different by the day at some stage of forever unhealthy. How can I be dependable? How can my brain take all of the training, pushing myself through years of study, missing out on life due to studying and working my ass off. I know I deserve this and I want this, I need this, my family needs this. I feel helpless at times when I’m supposed to be the helpful one helping the ill not being the i  ll.

      I have to find a neurologist a.s.a.p. because I called my local Neuro. to have an emergency visit because, I’m pretty I’ve been having a flare as to what’s been making me even sicker. He WOULD NOT see me which he says “it doesn’t seem MS related”, so I have no choice but, to sit at home and suffer in hoping its just my MS acting up. Thank GOD I have an awesome PCP but, there’s only so much she can do she’s not a Neurologist. My permanent Neuro. (means keeping no matter what) is located in Boston which is at least an hour drive depending n traffic and she is only at the Hospital 2 days a week because she’s traveling the world HELPING! I can’t go too the ER to get the IV of steroids I know I need because the closest possible one that’s any good is…..I honestly don’t know at least 20-30 minutes from the 2 closest hospitals around here. For the 4 years I’ve had MS not one time has anyone given me an IV of steroids during a flare. I’m forced to suffer in silence and wait it out while being miserable, and making everyone around me miserable too. I’m not even on MS medication right now because I was allergic to it and I don’t know if I want to try every one in the book just in case I might find one that might work. Absolutely disgusted with the healthcare system in this stupid NH state. I got screwed bad. So, now I’m hunting with my PCP and my attorney helping to find a new Neurologist that is remotely closer that Boston than I can see who takes Medicaid. Yes, I have MEDICAID because, I’m not healthy enough to work at the moment. I should just tell everyone now (not sure why I’m so emotional about it), that I was denied disability first round, as most do but I have an attorney. Going for round. The letter contradicts itself as well it stated, “even though you have severe health impairment:, including: Multiple Sclerosis, degenerative disc disease, anxiety, depression, fibromyalgia and ADD (to say a few), yours aren’t severe enough to meet our requirements”. Holy crap what more do I need to add to my list of illnesses for you people who don’t know me to say I can’t work at the moment but, still have a family to support while being a student? I have 2 degrees going on 3 do you think I planned for this? I rather go to work believe me! Who the hell would rather sit at home wondering what’s next? Will I lose my vision completely next time, maybe the numbness won’t go away, maybe my family and friends will leave me because I’m useless. That’s only how I feel sometimes but, I’m sure you know what I mean. I’m not suffering in silence anymore, I have a voice and I’m going to use it and it will be heard not only for me but for every MS WARRIOR out there!!! COUNT ON IT!! Again, “don’t take my kindness for weakness”-awesome quote.

    

  I know my other true love is writing it always has been and having MS has made me do it more and become better at it. I know I’ve said this before but, I truly believe that since having MS I have found myself, my strength and weaknesses, my passion, joy, true real honest friends, how far I can push myself so I know my limits, and most important how to be happy when unhappiness was my life for so long and disliking myself because I got (many) health issues especially multiple sclerosis. I always had the feeling that I was put here to help people but, I know that I can do this many different ways in many different forms. I’m happy if I know I’m truly doing something for others who appreciate it (or will eventually), loving my job, and mostly again helping my family succeed and giving mine back. Mine? I mean giving back for what I have already received, like “paying it forward”. That’s just me though of course!

good quote from PNow, that I did home-work for about 2 days straight I need rest and my bed. Thanks for reading everyone I wish you all good health and happiness. Until next time…..

♥ ONE LOVE ♥

JENNY

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.

Update From My Neurologist Appointment!

Update From My Neurologist Appointment!

Hey everyone I hope all is well!! Just a quick update on how things are going. My TB blood test which was a T spot was negative! There’s one test done. I saw my Neurologist at MGH yesterday. Thanks to my WONDERFUL boyfriend for coming with me and supporting me!! She said that I DO need to have more tests done as well as I’ll be do for another MRI in August. I need to have: another sleep study done and see a sleep specialist, I need to see a  Rheumatologist because I also have fibromyalgia (which I knew), and have a skin biopsy done. She said my symptoms that I’m having issues with lately don’t have to do with my MS that it’s something else, possibly one of many connective tissue diseases.Thanks God for this Neurologist she is amazing and has accomplished so much at such a young age. She just got back from traveling, which she travels all around the world to research and help people. What an inspirations she is already and I’m EXTREMELY LUCKY to have found her.

If your wondering my symptoms I’ve been having trouble with lately are: randomly falling asleep (which I was diagnosed narcoleptic about 4 years ago), really bad swelling in my legs and feet, skin changes (all of a sudden I have vitilgo), and extremely horrific pain in numerous areas. I’ve decided not to take any medication for MS because, the Copaxone just made me even more miserable and caused orange sized welts and bruises all over my body and I’m allergic to it. She said that’s my choice and she didn’t disagree with my decision. It’s so great to have an awesome Neurologist who believes me and doesn’t just say, “well that’s not my area or everyone has different symptoms”. She says this has to do with MS and this doesn’t. No bullshitting and no run around. How relieving!!

So…on that note I would say things are starting to finally look up!!! I was expecting horrible news but, she’s very thorough and I love that! Until next time everyone I’ll see you on the flip side! I want to thank all of my followers and I appreciate all the wonderful comments everyone has made I feel like I’ve made a new family on here!!

One love,

Jenny

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