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

A Post To Help Host A Benefit Here in NH!! Let’s Do This!!

I need help and I would love to hear your thoughts please on hosting a benefit for MS!!!

 

http://www.youtube.com/watch?v=3aF9AJm0RFc

IS THIS REAL??

IS THIS REAL??

A quick update….today I called my neurologist’s office again to get my results of my spinal MRI, “We’ll call you back”, they said. Like I haven’t heard that before. Called the MS association to see where I can go that will except my insurance and the closet place is Boston so I’m going back there. I called my PCP to see if she got my results and, she called me back herself!! That’s rare she never received a copy either. Next I called medical records and sure enough they said ya come on down and get a copy we’re waiting for you. I went got my copy and it states….I have degenerative disc disease, disc protrusions, tumors, budges, hemangiomas, spinal stenosis etc…. so it’s not looing so good 😦   Still have not heard from my OLD (now) neurologist and the next appointment I could get isn’t until the end of January and he specifically said “don’t giver her a follow up appointment”! This is absolutely ridiculous! I have a bad feeling something else is going on considering my PCP said I should see a cancer specialist. Honestly, I’m scared to go to sleep, lift something to heavy, miss out on anything that has to do with my kid’s and family etc… I have never been so scared in my whole life it would be different if I didn’t kids or a wonderful family and boyfriend (he’s great). If it wasn’t for my family (and my bf) we wouldn’t be having a Christmas, have food, pay bills etc… I hate taking anything from anyone and I’m not supposed to be helpless, I’m supposed to be helpful. I hate this, I hate this, I hate this!! I apologize from the bottom of my heart if I ever offended anyone (family, friends) anyone who reads this. It was never my intention I don’t think I did anything to but, everyone has their own morals 😉

I don’t know what else to do anymore but I WILL NOT JUST ROLL OVER AND DIE!!!! NEVER!!!  If anyone has any suggestions on how I can get the ball rolling on getting the medication I need ASAP please comment or like this blog so WE can be heard!!! To everyone who reads this or follows me or has reached out I hold a special place in my heart for all of you thank you!!!

What bother me the most is people who judge what they don’t know because they can’t see OUR PAIN, or blame it on being lazy believe me I have no time to be lazy! Close minded people who don’t understand until they have walked just a day in OUR shoes. Well, I hope to change that someday! I love you all ❤

Until tomorrow!!

One love,

Jenny

PLEASE I NEED YOUR HELP!! LEAVE A COMMENT!! :)

PLEASE I NEED YOUR HELP!! LEAVE A COMMENT!! :)

Hey everyone so please comment on this to let me know your opinion! I want to hear from you and know what you think PLEASE!!!  Does anyone think what I’m doing to try and help support others like me that have suffered or their families have suffered do to their illness when in fact something could have been done sooner? Do you think I should keep going no matter what in terms of fighting for my beliefs? Is anyone interested in helping me hold a awesome benefit for multiple sclerosis and for all proceeds they be going to an organization of my reader’s choice? How do you feel about medical marijuana, especially the dispensary that is trying to open in Epping, NH? Do you believe it will/does help with chronic pain, anxiety, appetite, depression and much and, also more than pain clinics who just want to give us medications to support the pharmaceutical companies who run all hospitals?

This song to me is about I feel that I get treated and looked at because; I’m young, pretty, intelligent, a woman who knows exactly what she wants, how these Doctor’s work, or I get a “well you look fine”, they think I just want pain meds (not true at all), I don’t look “sick” all the time etc…..

My lover’s got humour
She’s the giggle at a funeral
Knows everybody’s disapproval
I should’ve worshipped her sooner
If the Heavens ever did speak
She is the last true mouthpiece
Every Sunday’s getting more bleak
A fresh poison each week
‘We were born sick,’ you heard them say it
My church offers no absolution
She tells me ‘worship in the bedroom’
The only heaven I’ll be sent to
Is when I’m alone with you
I was born sick, but I love it
Command me to be well
Amen. Amen. Amen

Take me to church
I’ll worship like a dog at the shrine of your lies
I’ll tell you my sins and you can sharpen your knife
Offer me that deathless death
Good God, let me give you my life
If I’m a pagan of the good times
My lover’s the sunlight
To keep the Goddess on my side
She demands a sacrifice
To drain the whole sea
Get something shiny
Something meaty for the main course
That’s a fine looking high horse
What you got in the stable?
We’ve a lot of starving faithful
That looks tasty
That looks plenty
This is hungry work
Take me to church
I’ll worship like a dog at the shrine of your lies
I’ll tell you my sins and you can sharpen your knife
Offer me that deathless death
Good God, let me give you my
No masters or kings when the ritual begins
There is no sweeter innocence than our gentle sin
In the madness and soil of that sad earthly scene
Only then I am human
Only then I am clean
Amen. Amen. Amen

Take me to church
I’ll worship like a dog at the shrine of your lies
I’ll tell you my sins and you can sharpen your knife
Offer me that deathless death
Good God, let me give you my life

Oh, I’ve also got from my Nana who does have dementia that ” This happened to me because I turned my back on God”. She also has no idea what I believe in or whom I believe in. But, I just it all roll off my back because, I know that everything happens for a reason. I honestly believe that this was a blessing sent to me to give me strength, courage, a voice that I must make be heard, my way to help others (considering I don’t now what my future holds, career wise), and to find my true calling in life. Living everyday not knowing what tomorrow holds is a way everyone lives but, now I know it’s different for me now.

Please help out so I can decide ( I’m a Libra) how to move forward!!! I trust you!! I believe in you like all of you who have read my blogs and continue to do so, please know how that this means so much to me in a way I cannot describe 😉

One love friends,

Jenny ❤

See you soon!!! Thanks for reading!!!