Wednesday, January 15, 2014

YOU'RE GOING TO BE LAUGHING & CRYING AFTER YOU READ MY 18TH COLUMN TODAY!


The Only thing that hurts worse than realizing my little boy will turn 10 in 38 days, is the fact that I myself will be celebrating my last year in my 20's in 40! Oh the agony!!!
Everyone keeps telling me that your 30's are fun, amazing, wonderful. To that I reply..."I'm a woman! We are programmed at birth to loath turning 30. It's out of my hands".  Thirty, flirty and thriving in my reality is...Thirty, hurting and WRITHING...in pain! I don't feel 28 as is.

I feel old...Older than old. My body has damn near started working against me. I fight myself everyday to get up and wash clothes..dishes...my body! Add on top of all this that my baby boy, my first born is entering double digits two days before my sad...sad birthday.

I will surely be in the bed from depression. He's growing up on me, and if the day of my birth isn't enough to remind me of how old I am, he makes up for it. I remember holding him in my arms. He was so tiny, and perfect and volnerable. Now, my 9 year old son sets only 5 inches smaller than me, and out weighs me by 20 pounds!

Sigh........my life is flashing before my eyes and i have no way of slowing it down. That's how it is though right?

Same with life as Multiple sclerosis if you think about it. There are things you can do to improve your quality of life ( with life & MS ), there are moments that seem to be devistating, moments that seem to make it all worth it. There are things you can do to slow it ( again life and MS ) for a brief while, but in the end you can't stop it, no matter how bad you want to.

Life goes on...and even though we don't want it to...so does MS...dammit!

So this is me...dreading my thirties, hurting that my babies aren't babies any longer, but loving every second of my life, because I still have one!

Friday, January 3, 2014

"After over a year of being a Copaxone girl...I was declared a Copaxone failure! FAILURE....what a bunch of shit. I was pissed!"



After over a year of being a Copaxone girl...I was declared a Copaxone failure! FAILURE....what a bunch of shit. I was pissed!

FAITHFUL, and LOYAL were the words that came to my mind, That is exactly what I was to this drug and it failed me in the end. It's quite frustrating!

I do not want to take a shot everyday, but I did thinking I was active in the fight against this MS bitch.

NOPE....wrong.

My doctors have decided that I am to be switched to Gilenya. I need a hundred tests, pokes, skin maps, excetra before I can begin taking said medicine, but I'm due to switch in the next month. I'm nervous....and excited i guess you could say. All of the research I've done has shown positive reviews for the medicine, so I have high hopes.

Discovering my medicine for the past year hasn't done a thing, that i have to be put on a new medicine (that is in the highest tier of MS medicine) has really made me have some odd and surprising emotions. Anger, irritation, RAGE! I am mad as hell.

We all get diagnosed with this shitty disease, then everything that comes after is up to chance. Trial and error. Will this work? Oh I don't know but we'll see?!?! DAMN, I want some help! MS is an asshole! We as patients and the doctors can try all we want, in the end it's really all a guessing game....and I really hate guessing games!

With all that said, I'm ready for round 2 against this bully. Maybe Gilenya will help me kick Multiple Sclerosis in the ass! New year, new everything! If this year could bring me a new pair of legs that'd be great, but I'll settle for new medicine.

Those shitty days I talk to you guys about...I'm having one. I feel good body wise, my health isn't SO bad, I'm just mentally drained by all of the thoughts that swarm in my head about the future. But one thing I do know for certain, that isn't up to chance or a guess...I'm going to fight. Until I have no fight left. MS sucks and I feel like busting it's ass!!

Monday, December 30, 2013

I GOT ENGAGED! I HAVE PANIC ATTACKS ABOUT MS & MY FIANCE

Beth Dean, Columnist, MSnewsChannel.com
I recently got engaged…to the man of my dreams!  He is everything I’ve ever wanted and more! It’s amazing actually. I never really believed in soul mates, but if there is such a thing…he is mine! You would think this happy great news would have me on cloud nine? Yes….and no…. Ever since he proposed I have been having panic attacks and massive anxiety! Not because I’m scared to marry him, I don’t want to or anything of that nature. I’m scared for him.  My disease became very real to me a few days ago. Needless to say I have been having a string of shitty days instead of one every so often.  What if it gets worse? Soon? What if he has to care for me, what about when I die? I don’t want to be a burden to him. I’m scared! I made the mistake of GOOGLING all sorts of MS related questions. Do not do this!!

I just want to be with him and be happy. But all these things are running through my head constantly.

I was searching for comfort and ended up making my worries even heavier! Sickness has a way of sneaking up on you and taking pieces of your happiness. I am personally sick of it! Instead of living in the present and being filled with joy…I have been making myself sick with worry about what COULD happen?!?! How messed up is that?
MS is different in everyone. Just because someone with MS is so bad off, just because someone loses a battle with MS…does NOT mean you will!

Today I am owning my happiness. I am ready to start my life with a wonderful man, our children and work on building our own family. He’s fully aware of my illness, and all the comes with it. If I get sick, or anything to that nature, isn’t that what the person you love is suppose to be there for? Support…comfort…unconditional love?

I have all of that. What am I tripping over? Being scared of the future
happens to everyone. Sickness or not. That doesn’t mean that we deserve to be happy any less than normal non-sick people. I quit here. No more worrying. No more setting up all night on the computer! NO MORE GOOGLING!!!
 I’m going to let myself be happy and deal with what comes when and if it comes. Life is to sort and I am way to happy to lose one more minute to MS.

Multiple Sclerosis…you are a bully and NO you can not have my lunch money…DAMMIT!

PS...The wedding won't be any time soon. But when I have our big day...ill take tons of pics and update the angels ASAP! You've been with me every step of the way and I would love nothing more than to share my big day with all my ANGEL friends :)




DATING WITH MULTIPLE SCLEROSIS: OMG! Dating in general sucks! Dating & having an incurable disease is tough!


If dating isn’t hard enough already, dating and having an incurable disease is tough! All kinds of things to think about, ponder over…Should I tell them up front, should I wait? What if they get scared or think I’m weird? Will they think they can catch it, will it matter? 

It’s all very frustrating to say the least! I think one of the big things for me was the physical limitations I was dealing with. 

I was so embarrassed for anyone to see me walk, try to put my hair in a ponytail…even stand still for any amount of time because my legs would start shaking uncontrollably! 

Because of all of these factors and because I was freshly diagnosed and still dealing with it myself, I just avoided dating all together! 


I talked to men, but at all costs I avoided meeting them in person! When I finally come to grips with the fact that I’ll have this disease for life, and this is who I am now…things got a little easier. 

I began dating, but it was so hard! I played it safe. I didn’t go out and do normal things that normal couples do. I stayed close to home. I didn’t like going out in public because I would have rather died than for people to see me needing someone to help me walk. I guess it was all to do with pride. I’m stubborn by nature, and would just rather tough it out and do it on my own than take help from anyone. 

Needless to say, my first relationship fresh out of the gate was a flop. Ended soon after it began. I retreated back to my hermit lifestyle and pushed away anyone that even tried to come in my life! 

Then I met a guy…a special kind of guy. I guess I could say a kind of guy I didn’t think still existed…We started off talking, as friends. I knew by then it was better to tell him upfront about my MS, didn’t make it any easier…but I sucked it up and laid it all out there. He asked questions about what it was exactly, how it affected me, what the treatments were and so on. But he never acted scared, just…curious. I kept a safe distance from him. Every time I felt myself getting closer I pulled away. Got back into my bubble and stayed there until I felt enough time had passed to come back out. 

For 3 months, he tried…and tried…and tried some more, while I pushed him away and kept myself miserable. I guess it all changed when he informed me he was moving 4 hours away and the realization that I could lose him really hit me. 

Making a long story short…since that day, I’ve actually been happy! Dating with MS is still a challenge. He understands there are just some things I can’t do. I can’t go and walk for hours, I can’t drive, I get tired and down right exhausted at times. The funny part is now I’m not the one saying all this out loud. He can look at me and tell I’ve had enough for the day. Or if I suggest an activity, he’ll be quick to veto the idea on account he doesn’t want to put me in a situation that could hurt me. 

Dating in general just sucks, plain and simple. But when you can get past all your insecurities and doubts…you could find someone that you’ve been looking for all along. 

So if you have MS…and you’re having a hard time back on the dating scene…take it slow. Slow and steady wins the race. Talk to your family and friends. Let them tell you how crazy you are for feeling inadequate. 

HAVING MS IS DIFFICULT IF YOU'RE A MOM WITH 2 KIDS!

Beth Dean, Columnist, MSnewsChannel.com

Having Ms is difficult, especially if you’re a mother! Everyone with Multiple Sclerosis knows that the disease drains you of your energy. Makes it difficult for you to do the simplest of tasks. Everyday life and everyday things seems like they take great effort to accomplish. God blessed me with two kids. Long before my diagnosis of MS last year in October. My little boy is 9, turning 10 two days before my birthday in February. He is the epitome of a loving child. I truly believe he is an old soul, and he cares more for others than he does his own self. With that being said…he understands my disease. The workings of it, but he is still a child and the fact that mom is “lazy” seems to just set better with him…My little girl who is turning 4 on September 11th of this year is a whole different story in itself! I believe with everything in me God sent me this girl because he knew that I would need he to push me. She keeps me on my toes. A ball of energy fails to describe what she is. She is me….trapped in a child’s body. Mommy is tired…or my legs hurt is not a adequate excuse for this one. “Just try Mommy” and “You can do it, you’re strong” comes out of her mouth on a daily basis, and it is EXACTLY what I need to hear.  I couldn’t imagine my life without my kids. They are exact opposites. One has empathy and worry…they other pushes me to live and gives words of inspiration. Which are wonders for kids that are only 9 and 3!

I know people with MS have problems. New problems in fact everyday. But the choice to be a parent should not feel like a burden. It set me free. Without my little rays of sunshine, my life would be very different with this illness. Why would I need to get up in the morning? Why would I care? But they make me want to live, and live a good life. To the best of my ability. Finding love again makes you think. Do I want to have another child? I’m only 28...and I would love to have a little mix of me and my fiance’ to give me strength. It’s scary…of course!


All the articles I have read say thing like Pregnancy is good for patients with MS! Multiple Sclerosis and pregnancy is no different than the pregnancy of a healthy individual. There are risks after the birth of your child…risk that you could go into a flare. But if I’m not mistaken….don’t we run a risk everyday? Couldn’t we go into a flare any day…with no notice at all? Life is suppose to be made up of unknowns. It’s what makes it worth living. The very reason we should make everyday the best we can! So the long and short of this article is….LIVE! Have a baby if it’s what you want! Without mine, I might not be here to write this article. As I watch my 3 year old play on her little computer as mommy writes on hers…my advice to you….is LIVE! Be able to look at someone and say I enjoyed every moment of my crazy, annoying, sometimes shitty life!There ya go lol

Thursday, October 10, 2013

Since being diagnosed 1 year ago I have learned of 3 other females in my tiny town that have MS! Two of the women were born and raised all within 5 minutes of me.


In the past 11 months that I have been diagnosed with MS, I have learned some bizarre facts about some people in my small little town.


Since being diagnosed I have learned of 3 other females in my town that have MS! Two of the women were born and raised all within 5 minutes of me. Is that not weird. The third has apparently had this disease for sometime now, but we are all women between the ages of 20 and 35. I’m puzzled. A lot actually! Multiple Sclerosis is not contracted through the air or from your surroundings. They asked me multiple times if I had any history of it in my family while in the hospital. Odd huh?

I think about this all the time. What are the chances…the odds.

You have to realize my town is very small. Everyone knows everyone!

One girl is my exact age, we grew up together, best friends during grade school. The other one of my high school friends sister, I stayed the night with her many times. The last is an acquaintance. I haven’t ever met her in person, but we have mutual friends and she lives in the same town I have lived in my whole life. I’m not oblivious to the fact that people get sick…MS is different in everyone, and that holds true to this case. We all have different symptoms, struggling with our disease differently. It’s just an interesting fact to me that I dwell on sometimes when I think about my disease. Life is just funny I guess…that old saying “ You don’t think it’ll ever happen to you” rings in my ears often. Then when so many others share their diagnosis, it rings louder!

Am I crazy for thinking this is odd? Maybe MS is born and bred in the hills of Eastern Kentucky? Scary thought huh?

Friday, October 4, 2013

POST!!!!!!!!!!!!!!! You know what pisses me off ?!!? Shitty days! With MS, you’ll have quiet a few of them…


You know what pisses me off ?!!? Shitty days! 
With MS, you’ll have quiet a few of them…

The thing about shitty days for me is they come right in the middle of some good weeks! I’ll do awesome for weeks, better than ever. No balance issues, walk like a “normal” human being…even the muscle spasms will subside. 

Then BAM! Out of nowhere here comes a damn shitty day! You know the one I’m talking about?! You wake up looking around, thinking to yourself, do I really need to get up and use the bathroom? It seems so far away! You can feel your legs trembling already, yours arms are tingly and tight, and no matter how much or how little you slept…your STILL tired! 

It’s on these days that I remember, whether I want to or not that I have

Thursday, October 3, 2013

HAPPY MS ANNIVERSARY TO ME! I EXPECT A CAKE! I WANT THIS DAY CELEBRATED!!


October 5th...That's a big day for me! On that day one year ago, my "normal" life ceased to existed...

and my "new and difficult" life with Multiple Sclerosis began. 

I have a lot of mixed emotions about this day. Sad because I can't do so many things, and never will be able to again, but happy too....It's odd. I'm happy I know what's wrong. I have an answer, it's a ghost no longer. I can fight my disease. Be active against it, and not set on the sidelines and let my life dwindle away. 

I have put in requests with my family and friends. I expect a cake! I want this day celebrated!! 

Happy MS anniversary to me! The day that came unannounced, the day that change not only my life, but the life of those I love....the day that I figured out I'm not a medical mystery! 

So on October 5th I'm going to choose to be happy, and celebrate... I have MS...and I'm doing GREAT

Friday, September 6, 2013

I DON'T NEED A PITY PARTY: MY LIFE ISN'T OVER BECAUSE OF MS!


I have never particularly liked going to the doctor, but since my diagnosis with MS I LOATH IT! Of course they always make you fill out paper work each visit no matter what kind of doctor or visit it is.

The usual questions….Name, birthday, do you smoke, kids, surgeries….and then the dreaded question. Have you been diagnosed with a illness in the past year?

Dear God I hate answering this question!!! I know I have to…need to put yes, Multiple Sclerosis. But every inch of me wants to put NO…I’m FINE!

But I such it up and be a big girl and write my disease and all my medicines down in the little box provided...
I set, and wait. Wait for the usual reaction that usually follows. By the time I’m called back to see the doctor, I have prepared myself for the bombardment that is soon to come. Yet as soon
as the words leave my doctor’s mouth: “ You have MS…You’re so young, how’d it happen? Awe I’m sorry. That’s sad…you have your whole life ahead of you” my face turns into a grimace. I grit my teeth and reply to all their questions as politely as possible.

But let’s just be honest, this happens so frequently that now a days politeness is a rare occurrence! Yes I am young, it happened all of a damn sudden, yeah it’s okay….and YEAH, I do have my whole life ahead of me. I think I’m doing pretty damn good. I try very hard not to let this crap get me down.

I definitely don’t need a pity party and for people to act like my life is over. It’s far from over. I won’t let that happen if at all possible. I plan on fighting this thing as hard as possible! I will not set my ass in a wheelchair until that is my only option. I will NOT cry in front of anyone, because I don’t want to appear weak. I will NOT complain and whine all day everyday so people can think: Poor little thing. Forget that!

Days are shitty for sure. Some days I can’t stand my own self. I feel like digging a hole and jumping in, but to do so that would require me to dig a hole and jump in and I haven’t got the energy to do either! I just want to live my life. As hard and complicated as it is. I want to struggle silently on my bad days and laugh loudly on the others.

And when I do feel low I have a great support community in Stan’s Angels. They get me through!!

And the support of my friends and family make me strong. I am 28 years old. Diagnosed with MS.

I have 2 kids that I care for full time! I have a boyfriend, I am a daughter, sister and friend. I am making it…And that’s what I really feel like writing in those damn little boxes at the doctor’s office!

Sunday, July 28, 2013

I WONT LET MS AFFECT MY BEING A REAL MOM LOVING MY KIDS!

Beth Dean, Columnist, MSnewsChannel.com
Parts of my body may be damaged and broken, but my heart definitely is not, and I love them with every ounce of it! Multiple Sclerosis may affect my body and my whole life. But it will not touch my children. It will not take their happiness. And it will not affect my ability to love them just like a REAL mom.

There’s nothing like kids. They can bounce back from anything, make you laugh, make you cry unfortunately and love you like you have never been loved before. I never had trouble explaining my illness to my 9 year old. He understands my limitations and even gets concerned for me at times. My 3 year old….that’s a different story! She’s full of energy and funny to the extreme. Always on the go and doesn’t stop except for the occasional episode of SpongeBob Squarepants and a cup of chocolate milk. It really hit me a few days ago that she was confused. My guess is she overheard me tell my mother I was tired and my legs were achey. She looks at me and says one sentence that would surely break any parents heart. “Mommy, I just want you to be better…all the time” It killed me, cut me to the core.

Tuesday, July 16, 2013

I HATE HOW DENTISTS HANDLE MY MS!

I have never particularly liked going to the doctor, but since my diagnosis with MS I LOATH IT! Of course they always make you fill out paper work each visit no matter what kind of doctor or visit it is. The usual questions….Name, birthday, do you smoke, kids, surgeries….and then the dreaded question. Have you been diagnosed with a illness in the past year? Dear God I hate answering this question!!! I know I have to…need to put yes, Multiple Sclerosis. But every inch of me wants to put NO…I’m FINE! But I such it up and be a big girl and write my disease and all my medicines down in the little box provided. I set, and wait. Wait for the usual reaction that usually follows. By the time I’m called back to see the doctor, I have prepared myself for the bombardment that is soon to come. Yet as soon as the words leave my doctor’s mouth “ You have MS…You’re so young, how’d it happen? Awe I’m sorry. That’s sad…you have your whole life ahead of you” my face turns into a grimace. I grit my teeth and reply to all their questions as politely as possible. But let’s just be honest, this happens so frequently that now a days politeness is a rare occurrence! Yes I am young, it happened all of a damn sudden, yeah it’s okay….and YEAH, I do have my whole life ahead of me. I think I’m doing pretty damn good. I try very hard not to let this crap get me down. I definitely don’t need a pity party and for people to act like my life is over. It’s far from over. I won’t let that happen if at all possible. I plan on fighting this thing as hard as possible! I will not set my ass in a wheelchair until that is my only option. I will NOT cry in front of anyone, because I don’t want to appear weak. I will NOT complain and whine all day everyday so people can thing. Poor little thing. Forget that! Days are shitty for sure. Some days I can’t stand my own self. I feel like digging a hole and jumping in, but to do so that would require me to dig a hole and jump in and I haven’t got the energy to do either! I just want to live my life. As hard and complicated as it is. I want to struggle silently on my bad days and laugh loudly on the others. And when I do feel low I have a great support community in Stan’s Angels. They get me through!! And the support of my friends and family make me strong. I am 28 years old. Diagnosed with MS. I have 2 kids that I care for full time! I have a boyfriend, I am a daughter, sister and friend. I am making it…And that’s what I really feel like writing in those damn little boxes at the doctor’s office!

Saturday, July 6, 2013

READ THIS TO LEARN A BIT ABOUT ME, MY KIDS & THE REST OF MY WONDERFUL FAMILY!

My name is Beth. A 28 year old mother of two who just so happened to get diagnosed with MS in October 2012. During the time of my diagnosis I was going through a divorce. Married for 8 years to my high school sweetheart. It all went downhill due to many poor decisions and just not enough love. I got blessed with my first baby Landon in February 04’…2 days before my 19th birthday. Laynee followed many years later In September 09’. Through it all they have been my rocks….my little rays of sunshine during my cloudy days.

I have a very tight knit family, and the heart of that family would most definitely be my mother. That lady is amazing! She inspires me everyday. Married for 34 years to the love of her life. We lost my dad in June of 07’ to a massive heart attack, very unexpected and extremely devastating. She pressed on though. She taught me how to be a good mother, daughter, sister, friend and wife. Made sure I went to every doctor’s appointment, and even through my stubborness….made sure I did exactly what the doctor’s said.


 Mothers….I am they baby of three kids. Blessed with two older brothers. They love to torment me, poke fun of me, and push me for greatness. They have had no problems with making fun of me and my illness WITH me. We laugh a lot….and always smile. Mick & Jamie are two of my best friends. They cried with me through the pain and scary times, and laughed with me during the silly ones. I truly don’t know where I would be without those two. I have two nieces…Jillian & Kendal, and a nephew Scott that has been my little motivators. Now setting down when these three are present. Aunt Bee ( that’s what they call me ) can NOT use but I’m sick….or I have MS as an excuse when I have all these little faces looking at me. They keep me young, active and healthy. I would take nothing for them. My sister-in-law Chastity…who always keeps me on my toes. If I sound bored or down…It’s not for long. She makes sure I am entertained and tries like hell to make me live life to the fullest!

My boyfriend Jason, his daughter Becka and his whole family. They have only been in my life for 6 months, but I can honestly say I couldn’t imagine my life without them. I really don’t think I’ve ever been this happy…it’s a strange feeling but one I wouldn’t trade for anything!

And last but not least….my best friend and sister at heart Felicia. This girl has stuck by my side since I was 11. She was there through my crazy times, my divorce, my diagnosis...everything! She took time out of her busy schedule to take me to my MS specialist over 3 hours away multiple times. When I was in the hospital she was there. On my shitty days, she was always calling to cheer me up. She MAKES me get out of the house whether I want to or not and I’m always thankful! She’ll never know how much she is appreciated, or how much I love her. She is the epitome of a best friend! I know many of you are probably thinking…I thought this was suppose to be an introduction to you?!?!

Well ya see, these people are me. They are the most important part of me. They make me who I am, they are in everything I do, they are in every single moment of my life that I am happy. Family is were it’s at, and I have the best one out there!






Saturday, June 29, 2013

I’m proud to say I’m a Copaxone girl!


Most people that are sick pray and pray that their tests results come back normal, or whatever is wrong with them is no big deal. I just wanted an answer! I knew something was wrong with me, but I didn’t know what it was. I was fighting a ghost. That’s probably the scariest thing imaginable. But from the time I received my diagnosis, I knew what drug I wanted….

I had pretty much self diagnosed my issues and researched everything possible about Multiple Sclerosis. When the words “ You have Ms “ left my doctors mouth my reaction was “ I want Copaxone “. I was fully aware it was an injection, one that you have to give your self daily. I wanted it!!! I had read great reviews on this drug. It was my ONLY option as far as I was concerned.

When all the paperwork was squared away, Copaxone sent a nurse out to my home and she taught me exactly how to give the injections. The do’s and don’ts you could say. She even coached my mom on how to properly give me injections, which came in handy early on when I barely had function of my hands. Since being on the drug, which is going on 10 months now…I feel great.

As with any drug there are some things I don’t particularly like. But there are things that I love. A big check in the plus column is I haven’t had any attacks! No flares, which makes for a happy girl. I take my injection everyday like a good little MS patient and I truly feel as if I’m actively fighting this demon. I hate the bright red itching lumps that pop up on my injection sites, those are no fun. But hey, that’s the price you pay sometimes.

Shared Solutions, which is the manufacturers of Copaxone, are wonderful. They call every month, without fail. Ask how I’m doing even! My answer is always the same….I’m Okay. I don’t think they would appreciate….I feel pretty shitty today! They make sure I have enough medicine, alcohol prep pads, band aids…ANYTHING.

Who does that? Very few anymore this day in age!! I’m thankful! Not to mention the list of side effects is short and not very serious…this is my drug of choice. I’m proud to say I’m a Copaxone girl!

Friday, June 21, 2013

MY FAMILY!

LAYNEE
LANDON

That's me and the man! Lol

Thursday, June 20, 2013

I’m sick & tired of being sick & tired. I feel like bitching & damn it I intend to do so today


You know what pisses me off ?!!? Shitty days! 
With MS, you’ll have quiet a few of them…

The thing about shitty days for me is they come right in the middle of some good weeks! I’ll do awesome for weeks, better than ever. No balance issues, walk like a “normal” human being…even the muscle spasms will subside. 

Then BAM! Out of nowhere here comes a damn shitty day! You know the one I’m talking about?! You wake up looking around, thinking to yourself, do I really need to get up and use the bathroom? It seems so far away! You can feel your legs trembling already, yours arms are tingly and tight, and no matter how much or how little you slept…your STILL tired! 

It’s on these days that I remember, whether I want to or not that I have

Wednesday, June 5, 2013

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Plus...if you want a tank top like mine or many other styles and colors...click on the above link...become an Angel and then get an AngelShirt or Mug or many other great stuff!




Saturday, May 11, 2013

I'M BARFING NEXT TIME I HEAR: "You Don't Look Sick Beth"

It’s a hard thing to explain MS to people who have no clue what it is. I find people have a difficult time even believing I’m sick in the first place. “You don’t look sick” has become the phrase of choice in my life. 

That is one of the advantages/disadavantages of this disease. 

On one hand, I really don’t want to look sick. I don’t want people to feel sorry for me by no means! But on the other hand people look at me like I’m crazy sometimes when I get tired easily or can’t walk for long periods of time without resting. “You look normal”…

Well thank you! I didn’t know that people with a disease are suppose to look abnormal! It really gets under my skin. 

I don’t mind breaking it down for people. Explaining what is going on within my own body…I’ve got quiet good at it actually. I tell most like I told my 9 year old son, Everyone has a tiny army in their body that fights off all the bad virus guys when your sick; that army is called your Immune system. say it with me people: "Immune System"…..Well when you have MS, your little army guys aka. Immune System…Says Hey, I don’t want to snack on nasty virus bad guys, I think I’ll eat on some of this yummy fatty stuff that is protecting Mommies nerves! Remember, I’m talking to a 9 year old…most of the time! When they do that and eat away all the fat that protect the nerves it makes big sores on my brain, neck and spine, which causes mommy to do the Frankenstein shuffle some days. 

See, it’s not hard to break it down to were even a kid can understand, but people can still not grasp the concept that I don’t look sick. 

Listen, I may not…I may look fine. But I FEEL sick! All the time! 

I push through. I’m very stubborn and independent, but please don’t tell me I don’t look sick. Because I will take it as a compliment. That means I’m doing all this right. Smiling even when I don’t want to, making fun of myself when sometimes I wanna cry, doing the stand up comedy at my very own pity party! 

Some wonder why I tell people I have MS. My answer? It’s not going away! EVER! In October of 2012 the old me left..this is me now. I live with this everyday and if you want to be in my life, you’ll have to accept me. My disease and all. It’s a package deal really. 

So for all that don’t know me or some that do. My name is Beth Dean and I’m living with Multiple Sclerosis.

I don’t look sick but on the inside I’m a mess 

Friday, May 3, 2013

IDIOT NEUROS




Sometimes in life you have to upgrade..not always out of need, sometimes out of want. I want a new car, house, spouse, etc. Well...I want a new Neuro! I know it's not exactly what all the new kids want, but when your living with Multiple Sclerosis..that should be exactly what you want! 

Getting diagnosed at 27 with MS is not an easy pill to swallow. Especially when your neurologist makes you feel insane. I was asked if I have done drugs over a handful of times..drilled on WHY my family has no history of the disease…looked at with puzzled expressions when trying to explain why exactly I can’t walk. The level of unprofessionalism was not even breached until later on in my diagnosis. I live in a super small town where there really isn’t that many options. You take the help you can get, but correct me if I’m wrong..it’s suppose to be help, right?!?! 

After laying in the torture chamber they call an MRI for 3 hours and receiving the world’s best lumbar puncture in the world; I was finally told what this ghost was I was fighting. Multiple Sclerosis…the very sound of it brought me to tears! My life just started. Was I ever going to walk again, run with my kids, be normal? 

They admitted me into the local hospital for a week were I received IV Steroids for 5 days. It worked…I was cured! I thought. I was walking and putting my own hair up, brushing my teeth and taking a shower all by myself. I thought it was over. I was released and instructed to come back if any symptoms reared their ugly heads and told my symptoms would gradually keep fading. Maybe not go away all together..but they would get better. 

Less than a month later, I was back. They admitted me back into the hospital on Halloween night. Started my on another round of IV Steroids and then it happened:

The downfall of my neurologist. 
He cut me off, just like that. Walked in and refused me anymore medicine. “I can’t give you steroids all the time Mrs. Perkins” or my personal favorite “Why are you here?” Excuse me???? Who’s the doctor here? He just let me walk out of the hospital..if walk is what you would call it. I like to think of it as the Frankenstein shuffle. All I got was a parting gift of an appointment with a MS specialist. An MS specialist that was over 3 hours away, which made me not even want to go in the first place. Little did I know this guy would be my saving grace! 

So, I battled through months…Months of stiff achy arms and legs..My now famous Frankenstein shuffle, no balance, extreme fatigue..the works! Eureka….help, that’s what you look like! Upon arriving at the specialist I received brand new MRI’s which are not my favorite but necessary for people with this disease. I also got a test for Divec’s Disease..which I forgot to mention my “idiot neuro” told me I may have but we would just have to Wait & see! Good news first. I do not have Divec’s. 

I do have a rare form of MS, because I am special and always do things the hard way. I only have one lesion on my brain and multiple on my neck and spine. I’m told that’s unusual..lovely. My MRI’s came back and showed I had been in an active attack for the past few months since being diagnosed. HE DIDN”T EVEN GET ME OUT OF MY FISRT ATTACK?!?! I was shocked to say the least. Yes I had been on meds and taking my daily injection for the whole time, but it only prevented me from going into another one..I had been fighting this all alone. I had thought to myself of this period of time “I’m being a baby, this is just how your going to feel. This is your life with MS. Suck it up” 

Turns out I am one tough chick! I got admitted into a hospital were they actually cared. They finished my sentences even..about how I was feeling. Hey, you’ve done this before I see?!?! More steroids..more…more…even sent home with some. But they are making me so much stronger! 

I feel like I’m coming out of a fog I’ve been in for far too long. 

The moral of this long story, what I want everyone with Multiple Sclerosis to take away from this? 

You not only want a specialist..you NEED one! They know what to do for you..how to help…want to help! It’s a great feeling knowing someone lives to make you better. You may never be the same. I may always walk a little different, or get tired when doing the simplest of tasks; but I’m on the right track to healthy..for me. 


My last words of wisdom…

Just say NO to “Idiot Neuros” you’ll thank me later