Well, I'm battling migraines, insomnia, memory issues...etc...but I guess that's what they give you drugs for. I mean I have the ability to try out all of the latest greatest pain killers and migraine medications that I want. The downfall to this is the fact that I hate taking pills. I don't want to become addicted and I sure as hell don't want to become dependent on something just to make it through the days.
So, you are probably wondering what the light is at the end of the tunnel. Well, today I took my klutz of a husband (you know I love him) to the doctors with a sprained ankle. We see the same doctor who I absolutely love. He's a no nonsense kind of doc who doesn't just prescribe pills to get you out of the office or make his quota. He really cares about you. He asked about my brother and me. We made fun of Derek together...LOL
Now, my appointment isn't until next week but he was asking me how my headaches were doing. I told them they sucked and then he asked me how my memory was doing and I said the same thing but I would talk to him next week. He said good and don't miss the appointment because he has some ideas for me. HOLY CRAP!!!!! Someone has a clue....
All I wanted all a long was some validation for this or some help or pain management and now maybe I'll actually get some help. I'm excited. Even if I was able to manage the pain and get back some of my memory or at least learn to regain or maintain it I would be happy. I just couldn't imagine not having him as my doctor.
All in all, if Derek didn't twist the crap out of his ankle then I wouldn't feel so good about my up-coming appointment. I usually dread the next visit bearing the same news:
The tumors are still there. You just have to live with this. There's nothing I can do for this. I know this sucks but.... We can TRY to up this medication or add this medication.
It does get tiring trying to live a normal life after brain surgery. At first I felt like a million bucks. I was starving. I couldn't stop eating. The deficit I had was on the left side and my leg dragged and was weak. As time went on I started feeling like I was violated. Like I wasn't me anymore. I would wake up and the scar is there and I would cry all the time.
I try to walk and I fall. I try to talk and I stutter. I have Extreme Fatigue and Blank Spots and Seizures and major weight gain.....All of this means nothing compared to the fact that I'm alive. I fight these feelings everyday because I am alive. I want to go back to work. I want to be normal and I want to be the best that I can be.
I want to play basketball with the boys and go hiking. I want to go walking without falling or dragging my leg. I do have a lot of wants but most of all I want to live. I will live and fight this thing to see my boys grow.
Next month I go to Maryland to the NINDS. I cant wait. The doctors there will be able to find out so much about Neurofibromatosis Type Two. They will be able to find the answers to help my children and their children. I also get all kinds of free testing out of it. That right there is going to save me over 10,000.00. All I need to come up with is 900.00 that is paid back to me before I leave them. Pretty cool.
May 22, 2009
9 years ago