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

 

 

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NATURE MUST TAKE ITS COURSE

NATURE MUST TAKE ITS COURSE
This blog is one of the most important, personal blog’s I have written to date. I received my biopsy results today from my Comprehensive Neurologist. This disease is so rare my PCP didn’t know what it was, and the chances of me getting this disease are so rare due to my age, sex, race etc….. The chances are less than 1% (for me). Life is just kicking my ass right now. I honestly believe I have taken my MS diagnosis very well, but sometimes we all have our breakdowns. MY TURN!!!
My diagnosis makes perfect sense and I feel relieved, and extremely scared, considering what the “underlying disease” that caused this, is. So my diagnosis is: AXONAL SMALL CUTANEOUS SENSORY AXONS CAUSED BY SMALL FIBER NEURPATHY OF THE PERHIPREAL NERVOUS SYSTEM!!! They found my in my biopsy, which was taken from my lower left ankle, “marked reduction of innervation of the epidermis and of dermal structures such as; glands, hair follicles and blood vessels. This explains everything (besides MS) that I have going through for the past 6 years of tests, and I am pretty sure I have had it since high school.
When I was thinking about the title for this was because; I do NOT want to take any MS medications. I am pretty sure I will refuse them because they ALL make you feel worse than the disease does!!! Good thing I haven’t taken any because it most likely would not have helped me get the correct diagnosis. By letting “nature take its course,” is (in my eyes), not taking any meds, not going to see any Neurologist’s or specialists and what ever happens was meant to happen. Now I receive this news and I am all flustered and emotional. I keep telling myself that it’s great I finally know the TRUTH other than the MS. My MS Neurologist at MGH was exactly spot on she told me my symptoms, not all of them, but they didn’t match up with MS she knew I had some kind of connective tissue disease or/and small fiber neuropathy. I think I will stick with my Doctor’s in Boston because this disease is so hard to diagnose I don’t think anyone’s else would have found it and figured it out!
Do you remember as a child, how your always wondering what you will be when you grow up, who you will marry, have babies, what you will look like and where you will live etc…. Not once did I think at age 31 I would be so sick and unhealthy. I never thought this would be my life, my reality, it seems like I am in a sad movie about the “sick girl,” who just kept getting sicker until….. I am usually always happy, sweet, caring, which I am, but sometimes we all need to let go sometimes and SCREAM!!!!
No matter what happens in life you MUST always pick your-self back up, because you are the ONLY one who can your-self up, instead of lying there like a coward. BE A SURVIVOR, BE A WARRIOR, BE YOU AND LOVE YOUR-SELF AND EVERYTHING WE SHARE OUR MOTHER EARTH WITH. I consistently tell myself, it could be WORSE, it can get worse at any time so I must enjoy today, right now and let go of my past worries and not to worry about tomorrow because, nobody knows what tomorrow could bring.

KISSES XOXO

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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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WHEN IT’S OVER….

Hello my friends. I hope everyone has had a fantastic summer with many memories made, and plenty of sun! Us “Warriors”, most likely were fighting the “summer battle”, I call it. It consists of; unbearable heat intolerance, sweating, hiding from the sun, being sick etc… Unless your one of the lucky ones where you don’t suffer from hot/cold intolerance. It wasn’t a very “active” summer for me, just more Doctors appointments, tests and same old shit. I do have a few different updates……

jim morrison quote2The “new question”, my five Neurologist’s are asking is…..do I have small fiber peripheral neuropathy? I most definitely have MS, which is not “causing my symptoms”, Basically, they have narrowed it down to this:

  • I have RRMS, not currently active, or causing any issues
  • I am very unhealthy or ill, that I am complex to work with, and I need a team.
  • You have (so far):
    • ADD, degenerative disc disease with; bulging, slipped, herniated discs, and disc spurs throughout your whole spine.
    • arthritis, anxiety, panic attack syndrome, depression
    • visual disturbances, vertigo
    • narcolepsy or a REM/NON-REM sleep disorder
    • spinal stenosis
    • Relapse Remitting Multiple Sclerosis
Don’t forget about the new one, the new “possibility”, which can be caused by many different things. Diabetes is all over my family on both sides, and pre-diabetes, and also my glucose has been strange for a while now and this can cause small fiber neuropathy. Honestly, I don’t care anymore, I only 30 UNTIL SATURDAY!

I’m at the point in my life where I just want to be able to enjoy it! To not always have that thought, that “what if”, why do I feel this way today, consistently asking myself questions and answering them myself because nobody else can. Well I have a new plan!

This Doctor’s office in Concord and MGH are my last stops. If they can’t figure it out, then I guess it’s one of those things in life where “you’ll never know”. Sounds strange to think, I, me, can possibly live this way, but I have been to hell and back, and trust me when I say this, after asking question after question with no specific answer, getting opinion after opinion, state to state traveling, searching, I rather not even know anymore.  I have had a long journey already and dammit it is time, my time for the good parts! My time for the fun, not having to stay home all the time, running, jumping and playing with my kid’s while they still want to play with me. It’s my turn to REALLY LIVE, TO SHOW OFF WHO I REALLY AM AND WHAT I CAN REALLY DO!!!

wpid-fb_img_1441514234760.jpgSome advice for anyone who has or will go through all these “health questions, and what’s wrong with me”. If after five or six years the best Doctors in the world still can’t figure it out, move on with your life! Sometimes, things are better left unsaid, unanswered, and just so not worth our time. SO DO ME A FAVOR AND LIVE, PARTY, FALL IN LOVE, SPEND AS MUCH TIME AS POSSIBLE WITH YOUR FAMILY, AND MOST OF ALL LOVE YOUR-SELF AND DON’T EVER GIVE UP!!!

♥ONE LOVE♥

JENNY KISSES ⊗

¥‡∃⇔

WHEN IT IS OVER……… (THINK ABOUT IT) 😉

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Maybe I don’t want to know

   Hi everyone. I hope all is going well!

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Today I went to meet my new neurologist to get a third opinion. She is a really good doctor, I liked her a lot. She agreed with my neurologist at MGH. She said, yes I clearly have multiple sclerosis, but that is not what’s causing my symptoms right now.
    So there’s something else wrong and nobody can figure it out. I feel unless because I’ve studied and learned so much and MS and all the signs, symptoms, reading mri’s, differential diagnosis. I can think of a couple but I’m not the doctor. They both said the same thing, that what is wrong with me isn’t just combined into one or two diseases or disorders there’s a whole lot going on.
      I’m stumped!  So I guess I am now a research project. The question is, do I want to be? I thought when I got the multiple sclerosis diagnosis that it would be the end of the search and that I was right the whole time.
     I was right but not completely. Here’s what I’ve been diagnosed with so far throughout life:
– fibromyalgia
– MS
-Degenerative disc disease
-Spinal stenosis
-ADD
– narcolepsy
-Insomnia
-Irritable bowel syndrome (since I was in high school, I’ve been pooping blood very often. ) shhh
-Anxiety/ panic attacks
-Depression
-Slipped, bulging, herniated discs
-Inflamed lymph nodes, stop going on after two tries of antibiotics
– my vision changed a lot, especially my right eye since I had optic neuritis, I swear I’m going deaf
– I think myoclonus, which is similar to a seizure  but I guess it’s not one. I’ll be wide awake in bed watching T.V. not sleeping, and my body will like have tremors I can’t control my body movements, I’m fully alert, but I can speak at all! Sometimes it’s my head, my whole body and lasts for about 30 minutes -1 hour. I have my boyfriend laying next to me and I can’t even say call 911, nothing! It’s scary as hell!

  Those are some things that I have going on right now. MGH wants to study and research me, because I’m so complex, such a rare case and they want me to get a team of doctors. I believe I already have one there. I have a neuropthmologist, 2 MS neurologists, a comprehensive neurologist, a sleep Dr. Neurologist.
    I’m not angry more confused. I feel like I’m starting over again just when I thought I was good. I’m still deciding if I want to pursue this, and just see what happens or keep going to try and figure it out.
    Sorry it’s late,
I’ll post more soon,
Love you all,
ONE LOVE,
J

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ONE LOVE
JENNY KISSES :-*

I Don’t Know What To Do Anymore

good evening world. I feel kind of sad but also happy today. I guess you could say I’m confused. I don’t know what to do anymore, honestly. should I keep trying, looking, searching, and hoping for someone to figure me out? this feels like a nightmare a lot of times, although I don’t say it often, but we all break down once and a while so I think I’m allowed this one.
THERE’S SO MUCH BS GOING ON RIGHT NOW, I JUST DON’T KNOW WHERE TO GO, WHO TO TURN TO OR WHAT TO DO AT THIS MOMENT. Myself, I can trust and turn too!

I am honestly disgusted with the health-care system in general at the moment. I have five Neurologist’s at MGH, and they all tell me how complex I am, and how I’m such a hard case, and that I need a team of Doctor’s. That’s what you want to hear at age 30, right? Well the question I keep asking myself is; what do I do? Keep going and see if eventually someone figures me out, or take it day by day see what happens and stop trying to get my health situation figured out? I would honestly stop trying if I didn’t have such great kid’s, and a great family and a small group of friends. They are what keeps me going everyday, they are what inspires me. Without them my life be boring, and the only love I would have is the love for myself. I want to work so badly. I hate sitting at home, or running errands, and having the same consistent days. It feels like that movie “Groundhog Day”. I’m bored, irritated, and confused, Also, happy, content, and curious.

I found something interesting while doing my normal research, it is a hobby and interest of mine. Since we live in NH we kind of have to figure things out for ourselves, pretty sad right.  I came across glial cells and glialia. There are four different kinds. Their are numerous disorders and some related to these cells. After having MS for a while the cells repair themselves and the myelin to an extent of course. It is located in the white matter of the brain and is somewhat smaller than the typical MS lesion and these scares they cause are non specific to their location in the brain. My new neurologist who is looking for small fiber neuropathy in me as a possible underlying disease. I asked him if it were possible that I was born with MS or developed it as a child, and he said yes it’s very possible. Nobody thinks about these things when we’re kids, especially before the disease was common and they new nothing about it. I wonder how or if they can figure it out?  I also donated to the Biobank at MGH and if they find anything like cancer, or something that needs immediate attention they’ll contact me, otherwise they won’t. 

Ihave an appointment next week in Concord at a MS specialist clinic. So this will be my third opinion, so I guess go with the best out of three. Idk we’ll see. …

Staystrong and hold on! You got this!

ONE LOVE,

JENNY KISSES