Grieving

I am going to deviate for just a moment from my story. This post showed up in Facebook the other day, and so aptly describes what those with an affected by chronic illnesses may go through. I have also copied what I posted on my wall. I hope you take the time to read through this post. And I ask that you remember before judging, try to put yourself in their shoes. You do not know what they may be going through at the moment. Please feel free to respond, copy and share.

Please excuse the F bomb. Micki D (whomever she is) nails it!

This is so very true. Right now I’m so wrapped up in what I’ve become BECAUSE of this stupid disease, it’s hard to be and stay positive. I get the “But you don’t look sick” line ALL the time. It’s hard to look beyond the moment, yet you want so much to “see” 5 years from now and you are “healthy”. I fought tooth and nail to avoid surgery at all costs. I spent 2 years trying anything I could. Ultimately, it was surgery or die for me. Now, I realize it isn’t quite that dramatic for everyone, but it was for me….literally. But…again for me….it was short lived. I felt great for about 6 weeks, the right back down the tube. So the highs were high, until it was once more taken away. And now, here I am staring transplant in the face. I’m being told “you should be happy!”. But I’m not. Don’t get me wrong! Please! Am I grateful? YOU BET! Am I happy? NO!
I am grateful for the technology that allows such precise medicine to happen. I am grateful for my team of doctors, whom have kept me alive the last couple of years. I am grateful for my heart failure doc for his persistence in pushing my listing through the committee. I am especially grateful to Lou for standing beside me through all of this and through all my ups and downs (which there have been plenty). We tend to forget our loved ones while we are going through this process. Yes, we are in the middle of it, but they are going through their own type grief process.

But, I mourn the loss of the life I once knew. Looking back, I can see where I had been symptomatic for a long time, I just didn’t know what it was. And, I mourn the life I will have. I know it doesn’t make sense…..but I don’t know who I am supposed to be. Even though I fight my constraints in the here and now, I know and understand this person. I don’t know how to not to be sick!
But mostly I mourn the person who must die in order for me to live. It saddens me. But, I am so very grateful to their and their families’ willing sacrifice.
So yes, I grieve what I once was, what I have become and what I am to become…..

I just want to say one more thing about this. I don’t think people realize the enormous expense of having a chronic illness. I know my expenses over the last 6 years have surpassed a couple of million dollars. Yes, I have insurance, but it doesn’t cover 100%. And I can look forward to even more expenses after transplant! So, it’s hard….mentally, physically, emotionally and financially. You never know what the other person is going through. So please, everyone, be kind to one another!