updates

It's been a while since I have blogged on here. For that I am sorry. I have been locked in my house for the last few weeks battling the random symptoms that come along with this disease. I did start Copaxone back in the beginning of Jan but have yet to see any improvement. If at all possible I swear it's been going downhill lately. The numb legs are back, my left eye has been blurry since December, we have done 3 rounds or oral steroids. There was a day that I was in so much pain in my spine I ended up calling my mom to drive 50 miles to come get me and take me to the ER b/c my neuro couldn't see me. Did another round with the oral steroids which helped the back pain, but nothing else.

I have also started my own company out of my house which requires a LOT more time and energy than I expected but it is finally coming together. I now have a website, 3 different web stores, and the ebay auctions on top of it all. But I have finally turned a profit. Not enough to justify staying home with no job, but enough to make me realize that I CAN do this. And hopefully in a few months I will be able to justify not working elsewhere. I LOVE not having to answer to anyone else and I LOVE that all of my work is done on-line and I don't have to answer phone calls and I don't have to deal with people if I don't want to.

(Insert shameful advertising here ---->>> www.alonetimepleasures.com )

My fiance gave me the best present anyone with this disease can get. He bought me a king sized pillow top bed for Valentine's Day. He figured thanks to this cruddy disease I have been spending more time in bed, and I may as well be comfy.

Thanks to MS

Well thanks to MS I don't think that I want to find another full time job. I have decided to make the investment in myself and start my own business. Here's to hoping I can make it work!


Yes, sex toys!

Congrats! We figured out what is wrong with you!

You have MS! Yes, it is an incurable disease, no we don't know what causes it, and all treatment options are pretty much going to be a guess from here on out. For a 27 year old, this diagnosis was a death sentence. I have found an incredible group of people who are living with this disease and going through the same issues as I am. I have also been introduced to people who's symptoms are a lot worse than mine and it makes me grateful for what I have.

I have been keeping a journal of thoughts and problems I am having with this disease, and I have been selfishly holding on to it. most of it is just bitter complaining about this disease and my body refusing to work properly or notes to ask the doctor. I have also learned a lot about this disease and different treatment options along the way and I thought I might be able to help someone else by sharing my experiences.

If you have this disease, then you already know why I chose the title MSucks. Because it really does. It does help to have someone to talk to who has been through this. your family and your friends try to be there to support you but they have no idea how to help you and they have no idea what your body is really going through. they don't understand the fatigue and the frustration when your legs decide not to work. They will never understand the terror when your body doesn't respond to the meds and you don't know if this symptom is ever going away.

Like I said, I have been very fortunate to connect to a world of people who battle this disease every day. One of my favorite websites which has become a daily source of both information but also entertainment and understanding is http://neurotalk.psychcentral.com/

Ok now that introductions are over, I will start uploading my personal information to share. If it helps one person to realize how this disease effects you or if it helps one person not to feel alone in this battle then my job is done.

Are you friggin kidding me???

So I was laid off today. I am no longer working. And the real kick in the teeth..... They made my new boss (the one I interviewed, I hired, and I trained) let me go. I spent 3 months running the place by myself, I grew from 11 employees to 15, I was averaging over 15% more in sales than the previous manager, I was passed up for the job they had me doing because "I was not qualified" and I had to train the new guy and they let me go!

This will not be a bad thing. I will not allow it to get to me.

That about sums it up

I don't even know who I am anymore. My entire world has been turned upside down and inside out in a matter of 3 weeks and there is absolutely nothing I can do about it. I have never been so scared or helplessly lost.

I am in constant pain and it is getting worse with each day that passes. It's a lot worse than we originally thought and I am terrified the numbness isn't going away. And now it's spreading to my left side and I feel it spreading upwards and I know it is only a matter of time. I am hopeful the steroids will work, because if they don't, I have no other options. And the thought of this is unbearable. There is no "plan B", there is no miracle drug, there is no magic pill.

I want so desperately to curl up into a ball in my bed and stay here for the rest of eternity, yet I fight this urge every morning. I trudge on and force myself to move, to get going and to get on with life. Part of this is sheer stubborness, and I refuse to succomb. The other part is because my life isn't just about me anymore. I have a daughter who is my world and it kills me that I am not supposed to lift her up anymore. She wants me to hold her and I can't and it is just not fair. And I have no idea how to explain to her what is going on with my body. She is 4, and she is the reason i refuse to give up. She is the only thing I have ever done with my life that has made sense. She is growing up so fast.

I have a fiance who has stood by my side, the silent and rock steady person who's shoulder is soggy with my tears. I know this is killing him. I have watched his heart break and know it is my fault. Yet he remains steady and unfaultering, an emotional robot at times. I don't know what he's thinking and it drives me insane. I don't know how he is dealing with this, and becuase of that I don't really want to tell him how bad it is getting. I don't think he could handle it and I question if he is really staying. We are looking at marriage and the finacial benifit that would come with it and I feel guilty that he is put in this position. I don't know what i have to offer him, I don't know what's going to happen 6 months from now. I don't know how my body is going to hold up, and I feel guilty for wanting to marry him. Does he really know what he is getting into? And the very thought of living without him tears me up inside. I don't question his love for me I never have, but I don't know what I have to offer him.

I keep trying to wake up form this nightmare and each morning I awaken so stiff that I can barely move and I feel like reality has come back to slap me in the face once more.

I am angry that I have no answers. I am angry that I can't beat this, and I am angry that I have no one to blame for this. It's not like I slept with someone and caught this, it's not all genetic, it's nothing that I could have done in my life to prevent this disease from taking over my body and I am angry that I cannot blame anyone for it.

And if it isn't bad enough that my body is failing me and refuses to cooperate I can't seem to find a common ground with my emotions and it's like the roller coaster from hell that just never ends and I don't know how to deal with this on my own. I know that I have to be strong and I know that I have to fight this, but I don't know how. I am entrusting my life to a doctor I have met all of 3 times and I have no choice. I have been poked and prodded, X-rayed, scanned, and now I get to go have a spinal tap. Nothing like the thought of a needle being guided past your spine and into your spinal cord to make you want to keep on going. I am just so lost.

If you have ever wondered what it is like to be diagnosed with this disease this picture says it all.




This has got to be my favorite MRI pic!

Poetry calms the nerves.

This piece of glass, reflecting back to me

Images of an empty shell, the woman that used to be

Tattered and torn, a soul lost in despair

I am no longer strong, too exhausted to care

What a miserable existence when one's heart turns to stone

Emotionless dark eyes, where life's light once brightly shown

Who is this woman staring back from the looking glass

She looks so tired and haggard, not like the woman I knew in the past

This broken body, so tired and so frail

Her skin has become withered, ghastly and pale

I feel so worn, it's hard for me to see

What's become of this woman, that used to be me

No more of this wretched monster reflected in this evil glass

Pounding the mirror, the pieces shatter, I watch them smash

Like the thousand dreams of my youth, crumbling down to the earth

I sit and reflect on what this life is worth

The ensuing silence is deafening, my heart beating fast


So much of myself learned from the woman in the looking glass

Multiple Sclerosis? Are you sure??

****Retro Post more of a fill in the blanks***
I will start from the beginning so you can have an idea what it is like to have this disease.

Back in August (2008) I had a spot on my leg that was going numb. I thought it was from the really bad sunburn I had gotten a few days before. Then, I went bowling with my daughter and my fiance. Somehow I managed to slip and fall landing on my hand and my butt. The next day when my arm swelled up and turned purple I decided to head to the doctor. As much as I hate doctors, but my back was hurting from the fall too. Sometime during the day my entire leg went numb. Which by the way if you have ever tried to drive or walk with a numb leg, you will realize how funny it is.

Doc does all kinds of x-rays and tells me I have broken three little bones in my hand and wrist, and pulled a tendon in my arm. He assumed the back pain was from the fall and referred me to an orthopedist. Well, in the two weeks time it took to get in his office, the numbness had spread and I was having a hard time walking. He ran all kinds of tests and decided it was not my spine. It is not a pinched nerve he says.

So doc #2 refers me to a neurologist. Takes another week to get an appointment with him.

In the mean time I am googling all the crap that is going on with my body. Could be anything from a pinched nerve to worst case scenario, Multiple Sclerosis. it can't be MS! Nobody in my family has ever had it that I know of. There is a history of cancer, thyroid disorders, insanity, even a few cases of transgender surgery, but not MS that is ridiculous.


I Finally go to the neurologist. I was expecting him to tell me the Ortho was mistaken and it is a pinched nerve. I was expecting him to tell me to try Chiropractic. I was NOT prepared for him to tell me there is something wrong with my spinal cord and I need to go immediately for an MRI. He would not tell me what he thought it was at this point he told me it could be a number of things but he wants me to get the MRI right away so that we can figure it out. So his nurse schedules my appointment for the MRI. She was able to get me in that same day, and as I am standing there she is on the phone with the radiologist, and she says suspected lesions on the spine. Flashback to all of the google research...The only time I have ever heard anything referring to spinal lesions was MS.

So I freak out! I had a few hours to kill between appointments and as soon as I got in my car to leave it hit me....I might have MS. It hit me like a gunshot. in fact, I think being shot would have been easier to deal with. And as with all of life's problems I call me mom. I am crying so hard she can't understand a word of what I am saying. I managed to pull myself together and tell her whats going on. She tells me I am insane. It's not MS and there is no need to freak out until the MRI is over.


I make it through the MRI and the doctor's office calls me the day before Halloween and tells me I need to come in the next day. Hey my luck must be kicking in I think. Halloween is my favorite holiday. he can't give me bad news on my favorite day of the year.

Boy was I wrong! The first thing he says to me.."I have the results of your MRI and looks like what I expected. You have 4 lesions on your spinal cord. If I was a betting man, I would bet my life savings you have MS." But to be sure he wants me to go in for blood work, another MRI (on my brain this time)and a lumbar puncture so that we can rule out anything else that causes MS like symptoms like lupus or lymes disease.

**** Updates to this post******
2 sets of bloodwork, 2 MRIs, a spinal tap, a second opinion, a third opinion, and even a few radiologists later.......

It's confirmed. You have MS !

Like most people who are diagnosed with an incurable disease that has no definite cause I was scared, confused, and trying to figure out how long I have been living with this. It's been a frustrating roller coaster ride and this is just the beginning.

They found 11 lesions in my brain, 6 in my spine, and yes my O-bands came back positive. We also did 5 days of IV Steroids that kicked my ass pretty hard.