An Update

Hello everyone I haven’t written a blog in a long time and I am trying to get back in the swing of things and do what I love. It’s been a very rough ride suffering with this illness, and extremely stressful. It could be worse, much worse so don’t get me wrong but sometimes we all need to vent and let out our frustrations, which is normal for everybody. I will get you caught up on my forever journey and recent news about my MS.

I have a new Neurologist who I like and get along with just fine, but of course we always don’t agree with everything our providers say or do, but for the most part I like her the best out of al the Neurologist’s I have seen. She wants me to currently only concentrate on getting used to my MS medication which i have been trying to do for the past six months. I am taking Tecfidera one of the newer MS pills that have only been around for about two to three years. Honestly, I stopped taking it about two weeks ago because I am so sick of being sick even from  the medication for my illness. It does work well for some but, I have yet to find one that works for me, that my body can tolerate, and that helps my MS. I am due for an MRI, which my Neurologist wants to wait until September to see if the Tedfidera has worked at all considering I have not yet  had an OK MRI or shown any improvement, but unfortunately a lot of progression. She has told me that my last MRI was very concerning and she wants to keep me walking and out of s wheel chair, which I clearly want also.

I am waiting for the phone call to schedule my MRI to see if there is any changes and if the Tefidera helped slow the progression. If my MRI shows progression my next step is to try Rebif, which is a 3 times a week injection. Side effects are; flu-like symptoms, suicidal thoughts, depression, fatigue, injection site reactions are the most common. This will be the third MS medication I have tried. I am still not sure what I want to do, either try this medication or take my chances with the MS. The side effects alone is what scares me the most because I have children to take care of and a live to live. Who in their right mind wants to take a medication that has horrible side effects while not knowing for sure if it will even help? Not me! I have decided to try it but if the side effects are miserable, and I have injection site reactions like with the Copaxone I will stop it. For all we know these MS meds may not be doing anything or could be doing more damage. How would we even know? I guess this is something we may never find out.

Below is a picture of my new Rebif injections. These needles are a lot larger than the other ones I took for Copaxone. Luckily I’m not scared of needles considering I have about 32 tattoos!

 

 

My last MRI showed progression, active and new lesions, and “black hole,” which are scars where there has been permanent damage in that area of the brain. From my research this could mean I have progressed into secondary progressive or I could have had a form of progressive MS from the start. Every MRI I have had has shown some progression regardless of what MS medication I was on or have tried. I can’t seem to find a Neurologist who will just be honest with me and straight forward about my disease progression and whether or not it’s progressive. I feel like they treat me like a child or an idiot who doesn’t understand anything about this disease and the truth is I may in fact know as much or almost as much as these “Neurologists” do.

I finally have a date to see a Judge for disability. This is not what I planned for my life as most people do not, and not a choice I made but more of an option to live a better life and give my children what they need. People on social security disability are not “abusing the system,” or “just to lazy to work” and every other misinterpretation there may be. Some people are unfortunately not permanently disabled and have the ability to work that do abuse the “system.” These people make others including myself look like lazy scumbags, which is far from the truth. I can’t explain how much I would love to get up every day and go to work, to have money in my pocket and not have to borrow it or have a loved one take care of my living situation (money wise). It sucks and I feel like my independence has been taken from me and its an extremely difficult way to live, having to depend on someone if you want to eat that day or have a home etc… Now due to this debilitating illness (and many others I have been cursed with), I have to stand in front of a judge and beg for my life. I have to prove to a complete stranger how sick I am although I “look good”. Well, I’m happy that I can “look great” well my brain and my body are attacking each other on a daily basis every minute of my life until the day I die. I have two associate degrees and a bunch of student loans to pay back due to my education, which I cannot use any degree I have obtained now. It took almost three years for me to get a hearing after being denied, and this is with my attorney. I need this SSDI check so I can give my kids a Christmas, a birthday, a Halloween costume, new clothes etc…. I am not doing this for me, I am doing it for my family, especially my children who are suffering the most.

I appreciate everything and everyone I have in my life and give my deepest gratitude to them all. I will continue to write my blog in hope of reaching out to others who may feel hopeless, useless, depressed, confused etc… so they know they are not alone. I am always willing to share anyone’s story, opinion, comments on this or any issue you choose, as long as it is not hurtful to anyone or themselves. I hope people can take what they can in all goodness out of this blog, and I hope it inspires others to speak up and speak out about their illness, a loved one’s illness or anything you desire to be heard. We are warriors and united we will fight this war every day in hope to live a full, happy and productive life but, most of all a happy one! Until next time… One Love!

Jenny

 

 

Fall Time & Flare-Up Time

Getting to that time of year again. I have always loved the Fall, it’s my birthday, new school year, and feels like out with old in with the new. Unfortunately, now I’m starting to notice changes in my health and my MS. I get sicker in the  fall like a lot of people who have MS do, and I’m noticing when I feel a flare up coming on. This is the scary part, knowing that you feel an illness coming knowing you can’t change it,  stop it, or bother going to the doctor because you know what it is. You can ask for steroids which is what is necessary, unfortunately where he live it’s nearly impossible because I’ve tried to go to the ER during a flare and they never help me. I have had MS for about five years and I’ve never had an IV of steroids like I should be given and usually they’ll bring you your house but not in NH.

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Another thing I need to remember about fall is, it’s time to get ready for hibernation. I can barely get enough vitamin D in the summer and goodbye immunity, like completely.
I got  my blood work results the other day and guess what my lymphocytes and leukocytes are high, meaning I’m sick or have an infection and my red blood cells distribution was low, which is your red blood cells width and volume. Nothing to big to worry but I’m not playing around with my blood cells. I’m also a universal donor and I wish I could donate. I’m actually not sure if I can or can’t I wouldn’t want to comprise anyone’s health of course.

Ok well I hope you all have a good weekend and stay safe!
One Love,
Jenny KISSES
XOXO

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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What If?

What If?

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Hey everyone I hope all is well. What a day! Today I had two appointments at MGH; one with a comprehensive Neurologist who deals with nerve pain, muscle, etc… and unfortunately I missed my second, because they were half an hour apart so I have to reschedule, but it was with a sleep disorder neurologist.

The Neurologist I saw today it going to do three tests. YAY more tests! He wants to do a skin biopsy, a EMG, and an AFT. He is checking my peripheral nervous system and my autonomic nervous system. Looking for many things for example; diabetes or pre-diabetes, sensory organs, blood vessels, and muscles. Then if he finds something he has to figure out what is causing this, the mysterious “underlying disease.” He also says, like my MS Neuro., that I am complex, and such a hard case I need a team of Doctor’s. So talk about a new journey, would this count? Just kidding…

I donated to the “Bio bank” today, for researchers conducting all different kinds of studies on neurology patients so I donated some blood. The great part, is that if they find anything extremely important, or something that is basically worth worrying about, they will call all the donators to ask if they would like to know. I may get lucky and find out my mystery disorder.

Regardless of my “other situations,” I still do have MS, and still not sure what kind. I made a comment today saying, “what if I was born with it or have had it a lot longer?” He said it’s possible and unknown most likely. It gets frustrating when you have basically, a mysterious disease or disorder that had to do with your brain, and not getting many answers because, “your case is complex.”

I clearly understand that I could be way worse off at the moment. There are horrible things happening all over the world all the time. A few of my family member’s are not doing very well at right now. Sometimes, I just need to get it out of my system, and be sick of wondering what the hell is going on, and I have children and a family to take care of.ms dream 

I just hate being “the sick one,” or “having to rest a lot,” it’s starts to get old, honestly. I am at the point where I just want to say screw it, and move on with my life and just see what happens. At this point, if I didn’t have children, fantastic family, boyfriend, and people that care about me, I would say screw it! Luckily, I do have all these great wonderful amazing people on my life that make it all worth it.

So I will keep on trucking along and hopefully someday this will all get situated, but until then bring on the tests. Maybe my blood is some kind of cure, or new found disease or disorder that will make history. That would be kind of cool as long as it is curable and not deadly. 😉

Never give up! Not on your-self, family, friends and not even strangers. You never know how things will turn out. What if?

One love,

Jenny

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

REALITY CHECK

CONTENT: THIS IS MY PERSONAL BLOG HOPING THAT I CAN REACH OUT AND HELP OTHER’S SIMILAR TO ME WHO ARE HAVING MAJOR HEALTH ISSUES NOT NECESSARILY MS. THIS IS THE LAST TIME I’M POSTING A “CONTENT” EXPLAINATION BECAUSE, I DON’T FEEL THE NEED TO EXPLAIN MY REASONING FOR THE BLOG’S I WRITE!

         Hi everyone. Thanks for reading, I want you to know; you’re all amazing people and I want you tell your-selves this every-day. I’m a beautifully unique individual who loves my-self regardless of my flaws, instead I embrace them, I don’t care what other’s say or think about me, because I forgive your ignorance. Tell whoever may bother you; I hope someday you would stop to think about your arrogance and be more like yourself. People who are close to you that are so quick to bring you down, and judge you or your intelligence do so, because they’re truly miserable people themselves who are so jealous about your confidence, beauty inside and out, and how you can walk around smiling no matter how imperfect your life is. They wish they could be happy under any circumstance like you and me so they try to make you more miserable than them and get ridiculously frustrated that it never works.

THIS SONG, IF YOU LISTEN TO THE LYRICS AND STOP THINKING ABOUT BANGING YOUR HEAD LIKE ON “WAYNE’S WORLD”, YOU’LL UNDERSTAND NOT TO TAKE LIFE FOR GRANTED OR ANYONE IN YOUR LIFE! THEN YOU CAN HEADBANG ALL DAY!!!

    ⇒THIS IS A SMALL LIST OF “RULES” I LIVE BY ON HOW I THINK PEOPLE SHOULD BE TREATED, STRANGERS OR LOVED ONE’S, ANY HUMAN BASICALLY ⇐

  1. TREAT OTHER’S THE WAY YOU WANT TO BE TREATED NO MATTER THEIR CIRCUMSTANCE; HOME-LESS, ROCH, POOR, STRANGER’S, BASICALLY ANYONE WHO HAS DONE NO HARM TO YOU.
  2. You never know what someone is going through because, you never took the time to ask. So don’t call that home-less man a loser because, he doesn’t have a home to go to. Take the time to ask what you can do to help him and his situation.
  3. Don’t take everything personally, my life has nothing to do with yours so don’t flatter your-self thinking I’m upset because of you. Have more of an open mind, relax and think about it.
  4. We’re friends because; I we enjoy each other’s company not because of what I can do for you or what you can do for me. That’s called a friendship of convenience.
  5. Don’t put someone down because they’re having a bad day maybe there’s is worse than yours.
  6. Don’t take life for granted try and put yourself in someone else’s shoes.

Anyway……I just got a call from MGH and my Neurologist moved my appointment that was scheduled for October, to August. They didn’t tell me why but, I still haven’t heard about my last MRI….. I refuse to be scared  or worried because, it won’t help. It is what it is! Life is only part of the journey, when you understand who you are and why you’re here than you WON the million dollar question everyone wastes their time on this this planet searching for. The search is a waste of time because the answer was right there in front of you the whole time.

MS book quote♥ONE LOVE♥

JENNY

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