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

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

For A Good Cause and A Chance To Really Help

For A Good Cause and A Chance To Really Help

Hello everyone! once again sorry for not written for a little bit I’ve been sick dealing,  and with emotional and painful situations. I had the final test done Tuesday the spinal tap or lumbar puncture.It really wasn’t as bad as I though it was it was going to be the doctors said it was the fastest one they ever did. I guess because, usually it takes the spinal fluid a little bit to drip into the needle apparently mine just flowed right out. I should have all of my test results by Tuesday or Wednesday. I honestly wasn’t all about getting a spinal tap but, now my neurologist can’t give me anymore tests because now, I’ve had them all ( ha ha ha).

So this is Big!! I’m not part of the MS Society Volunteer’s. Below is the information about an upcoming bike race which will be my first volunteer job for the MS Society.

I’m working on how I or we can raise money for this race. My personal goal is $300 if we could make this goal or more money for the MS Society we’ll be helping out for an incurable disease that many people have and that is misunderstood and overlooked by many. I have a lot of fun ideas to raise money and many, many more!! My daughter already said she’s going to have a bake sale and brings her friends!! Please contact me or check out the website below. It’s worth taking one day to help our fellow brothers and sisters to live a life they deserve and to ley lose and have fun!!

Its also a great website to learn about MS whether you have it, or a spouse, or any relative or friend. It has great information and support.

I also have my own profile on the www.nationalmssociety.org just look me up 😉

 Bike MS: New Hampshire Seacoast Escape 2015

Date: August 22, 2015

Location: Stratham Hill Park

Time: Registration opens at 7:30 a.m. Start time 8:30 a.m.

Contact Information:
Kim Blanchard
1-800-344-4867
BikeMSGNE@nmss.org

Until tomorrow next time!

ONE LOVE!!!

good quote from P

IG!! I am now part of the MS Society volunteer’s. I am volunteering at the next bike race in Stratham, N

Finding Peace With My MS

Finding Peace With My MS

Happy New Year everyone! Anything I post is from my own personal opinion only!! I refer to my blogs like a journal that I want to share with anyone who may be able to relate or hopefully to reach out to others so you know your not alone no matter what disease or illness you may have!

So I have decided to go ahead and get the lumbar puncture.If the Dr. thinks it’s necessary I should  just get over it and do it. I’ll be ok I’ve had worse pain, so whatever. I will be starting Copxone most likely within the nest 2 weeks. It’s a daily subcutaneous injection which I have given many before to patients when I worked in the Doctor’s office as a C.M.A. I’ve never given one to myself, but luckily I’m not scared of needles considering I have about 15 tattoos. I’ve made my peace with it and  I have come to terms with the fact that its out of my control, and I need to do what I need to do for my health. With MS whatever damage is done, is done. You don’t get better the medication is given to patients to try and slow the progression of the disease. It doesn’t fix it or make it better it just ties to slow down the disabling process. MS is a disabling disease and everyone who has it  is different and has different symptom. There are 4 different forms of MS; relapse-remitting, secondary relapse-remitting, progressive and I think primary progressive. I can’t complain because it could be worse and eventually it may get worse or not time will tell. I have to live day by day because, I could wake up tomorrow and be blind, or in a wheelchair, or have a stroke basically anything could happen. It’s pretty scary but. that’s life.

I want to see what I can do to host a benefit for MS and of course all donations will go to the MS society or for patients who can’t afford their medication etc… For anyone who needs help! I was thinking maybe having a walk or run maybe on the beach or in Portsmouth or maybe even a family hike!  I’m thinking either from spring to fall time because, the heat kills me and I believe most people with MS from what I’ve heard. If anyone has any ideas or wants to help out that would be awesome! I am going to do this I’m determined! I’ll keep you all updated 🙂

Until next time!

One Love,

Jenny 🙂

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