My MS Story

I'd say that my MS Story began way back on June 30, 1992 when my dad was diagnosed with Multiple Sclerosis (MS). I had just turned 14 years old. At that time I had no idea what MS was. I had never heard of it before. I thought my dad was going to die. All I knew was that he became unable to work and "disabled".

Over the years I became very familiar with MS. I did research papers on MS in high school. But I kept myself somewhat distant from my dad. I didn't like seeing what the disease was doing to him. I didn't like seeing my strong dad in so much pain and too tired to do anything. Those of you that know my dad, know that he never complains. He never says what's really going on. He never lets on to how much pain he's really in.
I never understood why he didn't want to be around other people, or in a crowd, even at church.
I never understood why he couldn't hear very well and I would get aggravated with him.
I never understood why loud noises would make him jump and startle him soooo badly.

Now I understand.

In Mid-November, 2008 I started having what I called "dizzy spells". The best way to explain it is the feeling you get when you're crossing your eyes and how it feels in your brain. I don't know if that feeling is the same for everybody but that's what it felt like to me. Even now, if I cross my eyes and get that feeling, I remember those spells. It was happening 2-3 times an hour and then became more frequent. It was happening every 7-8 minutes. I could time it like clockwork. If I was writing or talking when one happened, I would slur my speech or not be able to write properly. This is what got me scared. Something was happening in my brain and that scared me enough to go to the doctor. On December 5, 2008, I went to my family doctor who immediately got me in to a neurologist that day. They were concerned that I was having seizures or mini-strokes.

(Journal page from 11/29/08)

The next days and weeks were filled with loads of testing. An MRI of the brain showed a white spot and the doctors still thought I was having seizures. I was put on seizure medications and felt totally doped up all the time. My memory had gotten bad but when I was on the seizure medication, I couldn't remember ANYTHING and just felt totally confused all the time. It was really bad. 

Once the neurologist realized that my dad has MS, then he started focusing on that.
Many people go years and years without a definite diagnosis. MS is such an unpredictable disease and has so many different symptoms and effects each and every person differently.
I told my doctor that I wanted the fastest way to a diagnosis.

Christmas was on December 25th and I went in for my spinal tap on December 26th. Other doctors told my doctor that he was crazy to let me have a spinal tap because the spots on my brain MRI weren't very big or significant in their opinion. Grayson's birthday is on December 28th. I had the spinal tap and then got the dreaded "spinal tap headache". It was worse than labor. So painful!
I made it thru and had Grayson's 4th birthday pirate party. I had the spinal tap headache for 5 days. Do not ever wait that long to go back for the blood patch! Even tho the blood patch experience was worse than the spinal tap experience that I had.

I said goodbye to 2008 and welcome 2009 with a lot of unknowns but was prepared for whatever came my way.

It didn't take long because on January 8, 2009, I was given my MS Diagnosis.
My spinal tap results confirmed it.
When you have a spinal tap to check for MS, they look for "bands" in your fluid. Normally an MS patient has 4-5. I had 24.

(My journal page from that day.)

I was at the doctor alone when I was told. I came home and my mom & Brian were in the kitchen so I told them. The next thing I did that night was make a playlist called "Encourage Me". Here's the list of songs:
MercyMe - Bring the Rain
Mark Schultz - He Will Carry Me
Casting Crowns - Praise You in this Storm
Jeremy Camp - There Will Be A Day
Francesca Battistelli - I'm Letting Go
Bebo Norman - I Will Lift My Eyes
Chris Tomlin - How Can I Keep From Singing
Chris Tomlin - Amazing Grace (My Chains are Gone)
Natalie Grant - In Better Hands
Natalie Grant - I Will Not Be Moved
Decemberadio - Find You Waiting
Rush of Fools - Undo
33Miles - One Life to Love
downhere - Here I Am
Big Daddy Weave - Every Time I Breathe
Big Daddy Weave - Hold Me Jesus

I suppose that it was a pretty random thing to do but that playlist helped me on more than one occasion!

First, I was started on steroids. This is supposed to slow the progression of the disease.
It does not work for me.
I felt the worse EVER on the steroids. It was a miserable experience.
They worked the total opposite on me. They are supposed to give you energy with an enormous appetite and build you up for awhile. I was so tired with no appetite and no energy.
I was supposed to do a week on the IV and then taper down to pills.
I begged him to take me off them early. So he did.
I did a quick taper and was done with them.
I will never do them again.

Here's what I learned pretty quickly after my diagnosis. (taken from this blog post)

People's reactions to hearing the news are pretty interesting. When they don't know what to say, I usually don't hear back from them. One of my best friends is going through something very similar but she's gone 8 months without a diagnosis and has much worse symptoms. She told me that your best friends are the ones that will keep calling to check on you even when you feel like ignoring them at times and don't feel like talking. The others are the ones you know won't be there and never have been. (Ok, so she said the others are the ones you want to tell to piss off, lol.) It just proves who real friends are. The amazing family that I have and my parents, cousins and aunts who call just to let you know that they'll do anything, whether it be watch the kids or take you to a doctor's appointment or just to let you know that you're welcome to call just to talk or cry or yell...anytime. Friends who send me a message with the same offers and even offer to help me clean or help plan Brennon's birthday party that's coming up. Or my husband who insists on taking me to the hospital once again in the morning and staying up until mid afternoon while I have yet another test and then my IV that takes an hour to go in. Or who goes to the store when he'd rather relax before going to work just to get me some more sour candy and cranberry juice because it's the only thing I'm thirsty for and metal water doesn't taste so good. :) Those are true friends and I'm thankful.

(Another journal page. This became one of my favorite quotes.)

My symptoms at this time included being incredibly tired, numbness in my hands, arms, legs, feet and face (though part of it is from the seizure medicine I'm on), losing my balance/running into walls, blurred vision, feeling like my eyes are crossed ALL the time is a huge one, stabbing pain behind my eyes that worsens when my eyes are closed and gets really bad the more tired I am, hearing strange noises at times or not hearing at all at times, near constant dizziness, shooting pains in my legs and arms, leg weakness, really bad memory (which is pretty much known to my friends & family, lol), problems talking/slurred speech (though that hasn't happened since I've been on the seizure meds either), problems writing (again, not since seizure meds), slight tremors in hands at times and headaches a couple times a week.
I addressed a lot of the questions I got during this time in this post.
Also in that post, I addressed my feelings on "friends". The same still holds true now.

The first year was really hard.
It was a struggle to get up and go to work every day. It was a struggle to try and "be ok" in front of my kids. My brain felt like it was turning to mush and my legs felt like jell-o.
I slept during my lunch hours and came home only to crash on the couch.
I had lots of problems finding the correct word to use when talking or writing.
I saw lots of specialists and was really sick of doctors.
I had a stay in St. Louis at Barnes and it was one of the worst experiences while being tested for seizures. That story is here.

I started the MS drug Copaxone in February, 2008.
This treatment is a daily shot that I gave myself.
The shots do nothing for your symptoms but what they do is delay any relapses. You should have a longer time between attacks while on it.
It felt like battery acid being poured under my skin immediately following the shot and I would get big red welps and knots. The only side effect this drug can have is a reaction if you hit a vein while giving the shot. It happened a couple of times and felt like a heart attack. You can't breathe and then it passes after about 10-15 minutes. It really freaked me out at first until I realized what happened.

I later switched to the injection Betaseron in early 2011. I have done really well on this drug. I inject every other day. The possible side effect is to have flu-like symptoms but I take Tylenol about a half hour before injecting and it usually keeps the flu-ish type stuff away.
Sometimes you have to try different things to see what works best for you.

I've tried different pain meds and this and that. You just have to keep trying until you find what works. Each person is different. I finally found a pain pill that helps and I take it every morning and at night only if I'm in pain and need it.

One thing I learned is that you have to be in charge of your own medical care.
Doctors and nurses see people come in and out all day every day.
You have to keep going until you get the answers you need! If you're not satisfied or don't feel like they've gotten to the bottom of your problem then you need to keep going. I know it's a huge pain in the butt, but you have to be in charge. If you're not satisfied with their answer, you get a referral to somebody else. Doctors don't know everything. They don't understand unless they're familiar with this disease. Even then, sometimes you get to a "specialist" and it's just not the right person for you. It's a relationship and you have to be comfortable or you won't get anywhere.
Do not give up.
It's your body and your life that you are the one having to deal with all this. You deserve answers. Don't settle.
I finally got to my current treating doctor & MS Specialist in May, 2008.
I was elated to finally see a doctor that understood and was just what I needed.
Dr. Barry Singer in St. Louis is highly recommended by me.

I've had amazing support.
My friends have been awesome. I'm thankful to know who my true friends are. (and you will definitely find out who they are during this process.)
My online friends have been so supportive! It's been truly amazing and such a blessing to have crossed paths with each and every one of you. You know you are. Some of you have been there for me from before the diagnosis even came. I'm thankful for your friendship. You are a blessing.

These days, I have daily pain but there's more good days than bad days and for that, I'm thankful!
Cold weather makes my legs hurt worse. When they hurt, it feels like stabbing knives in them.
Hot weather makes the fatigue a bazillion times worse. It's very important for people with MS to stay cool. My feet are pretty much always numb. I usually take my shoes off when I drive so I can feel the pedals. I lose my balance sometimes. I have tremors in my arms and legs. My memory SUCKS. My hearing isn't so great. My legs get really weak. My left side has always been worse than my right side. My left leg is the one that always hurts. My right one only does occasionally. I can't handle large crowds or lots of noise very well. It makes me want to scream my face off. It just takes time to adjust and find a "new normal".
I had a brain MRI in December, 2011 and had no changes from my last one two years earlier. That means that the lesions in my brain have stayed the same and there aren't any new ones. Awesome news!

If you're reading this and going thru something similar, please know that you're not alone. One of the worst things about all this is feeling so alone. There's very few people that truly understand what it's like.
It's hard to be around people that don't understand.
You are welcome to e-mail me (jamie_habermaas at yahoo dot com) anytime if you need a listening ear and/or some encouraging words from somebody who's been there.

(Shirt can be found here.)

So here I am, finding my new normal and trying not to get discouraged.
I believe that everything happens for a reason. If I can help somebody else going thru something similar, then that's one of my reasons.