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 

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