Monday, August 31, 2009

Dreaming of dear Lady Sleep

Sleep is a blessed curse that taunts me in the night. She is an ellusive creature who shudders at the thought of our togetherness. The traps I set are futile as she finds a way to escape me every night and I am left a shadow of my former self. I miss her. Like the love I feel, or the air I breathe, I cannot seem to function without her. Why does she torment me so? Does she not see how I long for her company? Can she not feel the pain that is caused by our broken bond? Oh dear lady sleep, please come back to me. As the sun sets and the moon shines from above I long for you. If you come back to me, I promise that I shall love, honor, and cherish every moment we spend together.

OK, so I have decided sleep is obviously a woman. And somehow I have managed to piss her off. They say hell hath no fury like a woman scorned, so obvioulsy she is one pissed off little lady!

Sometimes you are damned if you do and damned if you don't. Tramadol... supposedly a great pain killer as it is supposed to block the pain receptors in your brain. WRONG! For me, it gives me a headache and makes my neck hurt. BUT... if I take an Ambien afterwards, it makes everything stop hurting and I turn into a zombie before I fall into the bed and sleep like the dead. The only problems of course being that it's addictive and when I wake up I feel like there are weights attached to my arms and legs and my brain hurts. It feels like my skull is shrinking and there is just not enough room in there for my big giant brain.

Doc decides to add Ketoralac, an NSAID. (Non-Steroird Anit-Inflammatory Drug) which by the way has about the same effect as taking two tylenol.

This leaves me with 3 options:
* Drug up before sleep and feel like crap all day
* Just take the ambien and get a few hours of sleep but no enough to function
* Take nothing and skip sleep all together.

Yesterday I decided the pain was not unbearable, it was still there but not that bad. So I decided to take and Ambien and get some shut eye. Ambien and I have a Love Hate relationship. On the one hand, it shuts my brain off and puts me right to sleep. On the other hand, it only stays in your body for a few hours. It does not make me groggy in the morning and I don't sleep through my alarm going off. These are very good things. Except... I no longer sleep through my fiance's alarm going off either. And once I awake, that is it. Sleep is over, time to get out of bed before the pain in your back renders you immobile. I love that it puts me to sleep, but I hate that it does not allow me more than a four hour window of sleep.

A lack of sleep does many things to a person. I forget words, I have a hard time forming sentences, and most importantly, I feel an overwhelming urge to just kick the living shit out of anything that moves. Especially those people who feel the need to wake you from a much needed sleep. This morning I was woken up by a hand shaking me and asking me to do something (I assume "roll over" as there was a shaking hand on my stomach and some grumbling between snores coming from the other side of the bed). Three minutes later the alarm goes off. This is about the time my bladder reminds me it's time to get up. I get up, I make coffee and 45 minutes later the grumbling snoring shakey hand man come stumbling out of the bedroom. YAY! It's time for him to go to work. I can finally get my bed back.

I go crawl back into my bed, pull the covers up around me and.... And I lay there, then I turn this way and that way and no matter what I do I cannot get comfortable. Sleep left my bedroom at 2:45 this morning and she has no intentions of returning. 3:30 this morning I decided to have a cup of that coffee I made. I have been up for over 5 hours and it is not even 8:00 AM. This is ridiculous. On the plus side, I stopped crying. I think I am too tired to cry.

Wednesday, August 26, 2009

It's my BLOGY and I'll bitch if I want to!

And the MRI shows once again....IT'S PROGRESSING!! I now have 12 lesions on my spinal cord ranging in size from 9mm to 74.7 mm. The doctor is worried because it is progressing so fast and I am terrified of life right now. I really don't know what is worse, the idea that this disease is trying to kill me or the idea that it may not succeed and this is the quality of life I have to look forward to.

Every time I am alone, I find myself having crying fits, which is highly out of character for me. I am not a crying kind of girl. But I can't seem to shake this sinking feeling. Each day this disease seems to get worse and worse. I never even thought MS was even possible until I was diagnosed last October. Then I was told it is relapsing remitting and it will go away and come back. Then I was told it's looking like secondary progressive and now I am being told it is progressing faster than should be possible. Neuro started me on Avonex, but already believes it is not going to work and has already planned to switch me to Tysabri in 6 months.

And I am still not working, and I am at home feeling completely useless. I have no energy to do anything. I am now on Tramadol and Neurontin and Avonex and Ambien. I don't know if it is just the frustration of this stupid disease or the increasing symptoms or self pity or maybe even a side effect of the meds but I can't stop crying. I don't cry when my daughter is here and I don't cry in front of my fiance or my friends and family. And I am alone a lot lately now that my daughter is in school. Which leaves me time to think, and then I can't help thinking how the hell my life has turned into this and I lose it all over again.

What sucks is "You look so good!" yet I feel like I am trapped inside of a torture chamber and I have no way to escape. You can't tell by looking at me that my legs are on fire you can't tell that it feels like my skin is trying to crawl away. You can't tell that I cannot see clearly out of my eye or that it feels like I have three knives sticking straight into my spine. You can't see the torture that my mind goes through when I forget a word, or I forget where I am going or why I walked into this room. You can't seem to comprehend my new phobia of stairs, or daylight, or driving long distances. The dread that washes over me when it's time for bed because I don't know how bad it is going to hurt to try to lay down and I have no idea what new torture my body will invent the next day. You don't get to feel what it's like to hook an IV into your arm and pump yourself full of toxins that make you pray for the mercy of death as you watch your body respond and you gain 9 pounds in 5 days. You don't get to experience the panic that takes over when you get so much as a sinus infection because you know your eyes are going to take the hit. But I LOOK great...when I'm not bursting into tears that is.

The depression is a real bitch. That is one of those side effects they warn you about but you just don't know quite how to prepare for it. And yes, I do realize how much worse it could be. And I am grateful that I can still use my legs, and I can still swallow and I can still get from point A to point B on my own. I do know that it could be so much worse, but that doesn't make it suck any less. That doesn't make the hopelessness fade any faster or the fear subside.

Who knows? Maybe I am just going insane! That is what happens when you obsess over things. I don't think I have spoken to one person with this disease who doesn't obsess over it. It's not something I do on purpose but when you have something attacking your body and you feel the effects of it 24 hours a day you tend to think about it 24 hours a day.

I just felt like venting!

Thursday, August 13, 2009

So it's been a while since I have written. Where to begin..... Well, we moved again. And I cannot get internet access at the new house Thank you verizon!!

Moving caused all of my old symptoms to show up along with a few new symptoms and the fact that ALL of the old problems never went away(all but a few minor ones went away but those few continued to get worse).... the doctor now thinks I am secondary progressive. Wants me on Avonex right away to try to slow the disability and I have another MRI scheduled for tomorrow. Because I have thyroid issues and heart issues already there is a slight chance the Avonex could be fatal. But if this disease continues to progress at the rate that is I am looking at being in a wheelchair in the next year. These are my options. Ignore it and lose more and more functions or try to treat it and hope that it doesn't kill me. AWESOME! So I am a little stressed out which is not helping anything and I am finding myself having crying spells that last from a few minutes to a few hours.

Oh did I mention Avonex causes depression....and I haven't even started the meds yet. In the mean time I am on Neurontin to help stop my skin from crawling right off of my body....and it's not working.

And neither am I. I am still not working. I cannot stare at a computer for more than an hour without triggering the optic neuritis, I cannot stand for more than an hour without my back spasming and my feet and legs feeling like they are on fire and I cannot lift anything over 10 pounds. I have no idea what it is that I am supposed to be doing for a living as every job I have ever had requires at least one of the above mentioned. YET... I am not disabled enough to be disabled in the state of Virginia. But don't stress it makes MS worse.

And to top all of this off my daughter starts school (Kindergarten)in 2 weeks and I have no babysitter out here in the sticks as I don't know anyone and I can't get her on an "as needed" basis with daycare, so her first day of school i get to pick her up early so she can go with me to my neurologist appointment because to reschedule it requires waiting another 3 weeks to get in. I am frustrated and overwhelmed.

On the plus side I finally heard back from Johns Hopkins who sent me all of the required paperwork to schedule an appointment. I will fill that out and see what happens. This year has been a rollercoaster ride and it doesn't look like it is ever going end and I am tired of the hills and sick to my stomach and I really really just want to get off!