Tired of trying..
I feel like everything has just been going so wrong lately. I just can't put up with all of this medical bullcrap anymore. I've been hoping for so long that I would start to feel better, but I'm only going in the opposite direction. It isn't looking like my brain and spinal cord cysts are going to go away anytime soon and my iron levels are now at 10 rather than the normal 126 (and still dropping for some unknown reason.)
I've been on the academic team my whole life and I've never made a single B - I'm making C's.
Band is EVERYTHING to me - I had to drop out of marching band because it hurts too bad to carry a horn.
I've wanted to go to Gatton Academy for my final years of high school since I was little - I changed my mind. I'm not sending in the application.
And the thing is, I can't even get support from anyone. Most people don't even know. I try not to complain because I just want to be normal and I know it makes everyone else feel bad when I do. So now, I'm having to fake it. Fake the smiles and tell everyone I feel great. I'm just so ashamed of everything that's happened.. embarrassed that I don't give a crap about anything anymore. And because of it, I'm slowly losing the people that mean the most to me.
I'm tired of not knowing what the next day is going to bring. Sick and tired of relying on prayers that I don't even fucking believe in.
I don't know what to do anymore. :'(
I've been on the academic team my whole life and I've never made a single B - I'm making C's.
Band is EVERYTHING to me - I had to drop out of marching band because it hurts too bad to carry a horn.
I've wanted to go to Gatton Academy for my final years of high school since I was little - I changed my mind. I'm not sending in the application.
And the thing is, I can't even get support from anyone. Most people don't even know. I try not to complain because I just want to be normal and I know it makes everyone else feel bad when I do. So now, I'm having to fake it. Fake the smiles and tell everyone I feel great. I'm just so ashamed of everything that's happened.. embarrassed that I don't give a crap about anything anymore. And because of it, I'm slowly losing the people that mean the most to me.
I'm tired of not knowing what the next day is going to bring. Sick and tired of relying on prayers that I don't even fucking believe in.
I don't know what to do anymore. :'(
Replies
Emily you sound very smart. Both my boys were in band through college. Started in seventh grade. I know how strenuous marching band is. Will you be able to do orchestra when it comes round?
I imagine this disease is not new, am I right? That would mean you have been trying a long time to do normal things. You sound a fighter.
After awhile it has to wear you down a bit. The whole thing does suck big time.
Your whole life ahead of you and not being able to do what you want. I am glad you are playing the piano and hope you don\'t give up on the French horn because it makes beautiful music in orchestra .
As far as putting on that smiley face face for everyone, well I hope you can have one BFF that you can confide and share with. She could buffer stuff for you with the rest of your friends by not making a big deal but just being your wingman so to speak.
I don\'t fully know about your illness but I will research it so I have an idea.
In the meantime it is good to know someone such as yourself. If I were your parent I would be very proud of you. You are very special.
I have two sons and I am Nana to four grandchildren. My 8 year old Madison has cardiomyopathy. She is not able to participate in strenuous activity. This has been since birth so hopefully as she becomes a teenager she will have found activities she can do and enjoy. Right now she loves art.
So just wanted to say I understand and I am glad your are here and hope you will find the support that will make it all a little easier for you.
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Yes, I love orchestra! I\'m looking forward to it.
As for all of my neurological problems, I\'ve had issues with my CSF flow on and off for years and I\'m just now kind of figuring out how to deal with it.
Thank you so much.. I really appreciate the support. :)