Saturday, October 31, 2009
Halloween
While all my family and friends are getting geared up to celebrate Halloween, today is one of those days, that I lay in bed and cry. Halloween isn't considered a "big" holiday, but when you have nothing but time on your hands to think about how much your life has changed, holidays period are a big deal. I wish I had the energy or strength, or even desire to go and celebrate, rather it be dressing up and going to a party or taking my friends kids trick or treating. These are things I used to do. With all the pain, and medication, simple things are hard to do, and to even imagine, a full night out...brings to much anxiety. What makes me even more sad, is that I have alienated all my friends to the point, they don't even invite me to do things anymore, because they know I won't/can't. Still the invites were nice. I'm just bummed and in a mood. I hope everyone has a great Halloween!
Saturday, October 10, 2009
I need my life back.
I've officially been living back home with my folks for a little over a year now, something which I never thought would happen at my age. I'm thankful that I have a place to live, a roof over my head, but its definitely not what I had in mind at this point in my life. I'm hoping to move sooner than later, still waiting on disability to be approved, there is so much red tape and hurdles to jump, I'm just ready to have it happen.
I have tried so hard not to have major surgeries for my HS, but the time has come that I can no longer put them off. I'm cutting daily (I&D's), and I feel like I've had flare up overlapping flare up for almost a year now. Things are not getting any better, so its time to do something. I go on November 12, 2009, to start the process of scheduling surgeries. There are so many options, I'm just not sure what to do. I could have it all done at once, which would keep my in the hospital for a while, and quite a recovery period, or do them in stages. I truly haven't made up my mind. Hopefully the surgeon will give me guidance, however the decision will ultimately be in my hands. I'm pretty scared to be honest. Having HS, the risk of infection is so high. As with anyone having major surgery the fear in the back of my mind is "will I make it back home." The sad part about HS surgeries, statistically there is only a 50% chance of remission with surgery. Its a huge gamble. Sometimes you just have to roll the dice.
I'm at the point in my life, where something has to give. I laugh when I say "my life" because honestly, most days I'm not really living. I'm just here. I don't work anymore, I rarely see my friends. I stay shut in my room, because I don't want to be a burden on my folks. I feel if I stay out of their way, I'm doing them a favor. (They don't feel this way, this is how I feel. They are often upset that I lock myself away.) My only connection to life most days is social networking like facebook and twitter. Wooohooo! I don't answer my phone very much anymore...I really have nothing to say to anyone. The only thing I have to talk about is doctors and hospitals, and I'm sure ALL my friends are sick to death of hearing about that. I'm sick of being me. I need my life back.
I know this sounds so negative, however, its reality. I can't speak of anything else. I do try and stay positive as far as my future, and I have high hopes things will soon be better. I also recognize there are many things that people face much bigger than what I am going through. Things just get cloudy sometimes. I enjoy my pity parties every once in awhile, but you're not invited. :)
I have tried so hard not to have major surgeries for my HS, but the time has come that I can no longer put them off. I'm cutting daily (I&D's), and I feel like I've had flare up overlapping flare up for almost a year now. Things are not getting any better, so its time to do something. I go on November 12, 2009, to start the process of scheduling surgeries. There are so many options, I'm just not sure what to do. I could have it all done at once, which would keep my in the hospital for a while, and quite a recovery period, or do them in stages. I truly haven't made up my mind. Hopefully the surgeon will give me guidance, however the decision will ultimately be in my hands. I'm pretty scared to be honest. Having HS, the risk of infection is so high. As with anyone having major surgery the fear in the back of my mind is "will I make it back home." The sad part about HS surgeries, statistically there is only a 50% chance of remission with surgery. Its a huge gamble. Sometimes you just have to roll the dice.
I'm at the point in my life, where something has to give. I laugh when I say "my life" because honestly, most days I'm not really living. I'm just here. I don't work anymore, I rarely see my friends. I stay shut in my room, because I don't want to be a burden on my folks. I feel if I stay out of their way, I'm doing them a favor. (They don't feel this way, this is how I feel. They are often upset that I lock myself away.) My only connection to life most days is social networking like facebook and twitter. Wooohooo! I don't answer my phone very much anymore...I really have nothing to say to anyone. The only thing I have to talk about is doctors and hospitals, and I'm sure ALL my friends are sick to death of hearing about that. I'm sick of being me. I need my life back.
I know this sounds so negative, however, its reality. I can't speak of anything else. I do try and stay positive as far as my future, and I have high hopes things will soon be better. I also recognize there are many things that people face much bigger than what I am going through. Things just get cloudy sometimes. I enjoy my pity parties every once in awhile, but you're not invited. :)
Wednesday, October 7, 2009
HS on the Today Show
They did a segment on the Today Show about a woman with Hidradenitis. Even though it was briefly discussed...its a start.
To hear this woman talk is like hearing part of my own story...it's her story, but for all that suffer with HS it's our story. I'm hoping with it being on National tv it will raise awareness...be a beginning, for research, treatment and a cure.
This is not a part of my life...it is my life...my constant, my everyday.
You can watch the segment here:
http://today.msnbc.msn.com/id/26184891/vp/32673605#32673605
To hear this woman talk is like hearing part of my own story...it's her story, but for all that suffer with HS it's our story. I'm hoping with it being on National tv it will raise awareness...be a beginning, for research, treatment and a cure.
This is not a part of my life...it is my life...my constant, my everyday.
You can watch the segment here:
http://today.msnbc.msn.com
Letter I wrote for the HS Angels newsletter...My letter to HS....
(This was in last years news letter.)
Dear HS,
There really are not words to describe the amount of hate I feel for you. You have challenged my life in so many ways, and have won many battles. The war is not over, but you have succeeded in killing what's most important to me. I continue to fight a war that is not fair. I continue to fight a war no one understands. I continue to fight a war with no cause. I continue to fight a war with no solution. Many days I believe death, is winning. Fighting you is hard. Still I fight. I don't wish you upon my worst enemy. You have imprisoned me in a body I will die trying to get out of. Every time I look in the mirror I am reminded of how much of my life you have taken from me. Every scar a different story, a day I missed out on, a friendship challenged, the relationship I didn't have the courage for, another dollar unearned. The list goes on. You have become my life or lack there of.
You are the devil, and you have danced all over my body, but you will never get my soul. You have challenged my faith, but THAT you will never win. YOU may have a hold of my body, but GOD has placed the most amazing family and friends in my life. They may not be able to fight you , but they have been my armour, and my strength.
In the end, you may win against me, but I won't give up easily. I will do whatever I need to, to make sure one day you WILL be defeated. My white flag may be raised, but you too shall raise your flag and surrender. Your day is coming, and I will dance in victory, just as hard as you danced over me.
Dear HS,
There really are not words to describe the amount of hate I feel for you. You have challenged my life in so many ways, and have won many battles. The war is not over, but you have succeeded in killing what's most important to me. I continue to fight a war that is not fair. I continue to fight a war no one understands. I continue to fight a war with no cause. I continue to fight a war with no solution. Many days I believe death, is winning. Fighting you is hard. Still I fight. I don't wish you upon my worst enemy. You have imprisoned me in a body I will die trying to get out of. Every time I look in the mirror I am reminded of how much of my life you have taken from me. Every scar a different story, a day I missed out on, a friendship challenged, the relationship I didn't have the courage for, another dollar unearned. The list goes on. You have become my life or lack there of.
You are the devil, and you have danced all over my body, but you will never get my soul. You have challenged my faith, but THAT you will never win. YOU may have a hold of my body, but GOD has placed the most amazing family and friends in my life. They may not be able to fight you , but they have been my armour, and my strength.
In the end, you may win against me, but I won't give up easily. I will do whatever I need to, to make sure one day you WILL be defeated. My white flag may be raised, but you too shall raise your flag and surrender. Your day is coming, and I will dance in victory, just as hard as you danced over me.
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