Hope for the hopeless.

I know I've always said I would beat this scleroderma, but right now, it's definitely winning. And the hardest thing about it is knowing that I have to trust God and have faith and know that He loves me, but I can't help feeling betrayed. God has the power to heal me and end all of this pain... so why won't He? He sees me cry almost every day and sees me struggle in pain to perform simple daily tasks, so why does He watch and do nothing? It kills me even more knowing that I have these selfish thoughts against my Father, but I just can't understand. Being in a hopeless situation hurts even more because I know that there is hope, but it's just not finding me.

So I searched on Google these words: "scleroderma fully healed", to see if there were cases like mine that did heal. One of the results was a Christian inspirational novel about a family who's young son was diagnosed with scleroderma and found healing through the Lord. This both gave me hope and frustrated me because they found answers and I haven't yet. The other result was a testimony about a woman who went through a series of wrong diagnoses, like me, and a rapid progression of the disease, again like me. The symptons and daily hardships she described were almost exactly like mine, and she found a treatment that worked for her and made most of the symptons go away. I went out on a limb and e-mailed her, explaining who I was, my situation, and how her testimony brought me hope. She replied, recommending a doctor who lives in Iowa, and asked me to give her a call so she could talk to me. I think I may take her up on that. But communicating with her, with what could possibly be the key to saving me, made me so emotional. I cried for an hour straight, and as I type this, I can't hold back my tears. This disease has taken so much from me, so much that I would never be willing to give had I been given a choice.

What makes what I'm going through so hard to bear is knowing that I have to face it alone. I mean, my friends are always here for me, my shoulders to lean on, my source of abandon and joy, but... no one understands. Not one of them know what I'm experiencing, they can't feel the pain I feel every time I move, they don't feel how hurt I feel every time I'm left behind because I can't walk fast enough because walking hurts. This isn't their problem, they shouldn't be burdened with it. I don't blame them. I envy them. With every fiber of my being, I wish I was like them. Something as simple and commonplace as being able to sit Indian-style on the floor is a luxury I watch people do all the time and I wish more than anything that I could sit on the floor with them. Be one of them, not the outsider who has to sit in a chair because her knees can't bend all the way, the freak who is handicapped at the age of seventeen, the one who always has to explain why she can't do certain things because no one can understand why.

I hate this. I feel nothing but hate and anger and pain. The pain rules my life, it controls everything. I'm afraid of being hugged, even touched, because I have become so fragile. I'm afraid of holding someone's hand or giving high five's because I know it will hurt, but I want to be normal, so I take the hand that's offered or high-five the person raising their hand to me, and I feel the pain that comes with it, but I hide it as best as I can because I don't want them to see me and my sickness. I want to be seen as just me and nothing else. No sickness, no pain, nothing that holds me back. No one can see, because then I'll be on the outside again, and all I want is to be normal. To be seen as normal. The word "normal" has never been so beautiful to me, and it's all I'll ever need. Why can't I have just that?