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.
Sunday, November 16, 2008
Posted by legzzalot at 4:13 PM
Saturday, November 15, 2008
Posted by legzzalot at 5:37 PM
Monday, November 10, 2008
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
Posted by legzzalot at 5:36 PM
Wednesday, November 5, 2008
****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.
Posted by legzzalot at 4:58 PM