Eight years ago I was diagnosed with something called psuedotumor cerebri, and please don't be to concerned it sounds so much worse than it actually is. It is when there is to much spinal fluid in your head and it causes similar symptoms to an actual brain tumor. The absolute worst that can happen is some vision lose, and that is only if you don't get treated. I sure hope I don't have anyone reading freaking out thinking you have this, it is rather rare. When I was first diagnosed they did a spinal tap on me and that pretty much took care of things, until lately...
I seem to falling apart lately, low thyroid, low blood sugar, depression, anxiety, dp/dr and the damn headaches are back full force. :x Went to the dr. and things aren't looking good. They want to do another spinal tap to drain the fluid (just incase). This leads me to my problem. I have to be awake during this and VERY still. I am terrified I will have a panic attack and start shaking or hyperventalating (which would very dangerous). I have voiced my concerns to the dr., but he sort rolled his eyes at me. I know that everything will most likely be okay, but I am terrified. Any tips on how to stay calm and collected when you are in a situation that makes you panic? I realize that most of you won't be able to relate (thank God), but I just thought I would ask...
When it rains it pours
pseudotumor cerebri poem
Tonight, I sit, at home, alone
My heart strings strike a heavy tone.
How much longer, will I, can I, be alone?
How can I seek your heart to steal?
When my emotions are exaggerated or blunted, but seldom real?
How can you understand, or know how I feel?
Could you be with me if you knew?
If you knew all I am going through?
Like, sometimes, for a moment, I might not remember you?
When my head is full, and it's hard to speak
My tongue is twisted and my mood is bleak
Could you be my strength, as I feel weak?
When I'm weary and tired and feeling the drain
Of the dizzy feelings and frequent pain
Could you be my sunshine, amid the rain?
Could you hold me close, as the room spins 'round
To keep me from falling to the ground?
And could you sing to me above the whooshing sound?
Could help me see, if I lost my sight?
Could you stand with me, in this constant fight?
Should I even be asking? Do I have the right?
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*The PTC Creed*
I promise to accept the fact that I have PTC, a neurological disorder which will limit my abilities in my every day life.
While I will always have PTC, some days will be good, and some days will be bad. I will be thankful for the good days and try to make the most of them. When I am having a bad day, I will try to remember that most likely it will not last.
When I am having a bad day, I will listen to my body, and get the rest that I need. I will let my family know that I am not feeling well, because they cannot read my mind.
I will not feel guilty about resting, because I will eventually begin to feel better, and in the long run, it will also benefit my family.
I will not feel guilty or worry about the work that is not getting done while I am resting. The world will not fall apart without me, even though it looks like it already has.
I will not let anyone else make me feel guilty for taking time out for myself. They will never understand exactly what I am experiencing, the pain I feel, the exhaustion that I feel. They will never understand the fear that I feel when my symptoms creep up on me, and land me flat on my back.
I promise not to feel sorry for myself when I am feeling bad, because there are a lot of people out there who are in worse shape than I am. I will not be sorry for what I don't have, but be thankful for what I do have.
I promise to learn a lesson from my illness, which is not to take life for granted. I will try to enjoy every moment that was given to me, and be thankful for the times I can smile and laugh.
I will try to help others who also suffer from my condition. There are many confused and frightened people who need to hear comforting words from someone who has been there. There are many people who need me to take his or her hand, and be pointed in the right
direction.
Lastly, I will not ask "Why me?" While PTC has weakened my physical body, it has strengthened my heart, my soul, and my spirit.
