Discouraged

I waited all day for the phone call from Cleveland. I truly thought that this would be the day that I would be listed. Last time they had presented me I got a call fairly early in the day...so by 3 pm today I was concerned I hadn't gotten a phone call. So I called and left a message on the transplant coordinator line and I also emailed one of them.

About 5 pm the phone in the kitchen rings (our "home" line which is a cell) but there was no way I could make it to the phone in time to answer. Alexa brings it to me saying it was Cleveland but she didn't get to it in time either. I listen to the voicemail and was told that my case wasn't presented today because I didn't have insurance clearance. What?? I had insurance clearance before. We got new cards with new numbers in the mail last month to take effect January 1. We had given this card to Cleveland when we were up there last week and I also spoke to 2 different people on the phone about it. I thought it was all taken care of. I thought all I had to do was get another Hep B shot and pneumonia shot and all would be good.

So the message said that I wasn't presented because there was no insurance approval. So since I am coming up February 15 they will wait and present me after that because insurance should be cleared by then. I don't think that is good enough. That is a whole month!! And I should hope that insurance would be cleared  by then...it should be cleared now. I'm so mad!! It seems like I get a little bit of good news or hope and then it's just shot to pieces. Waiting a week is torture...how am I going to wait 4 weeks? I emailed her back to see what we can do about getting insurance cleared so that I could get presented next week...that 4 weeks is an eternity in my world.

I'm trying hard to be patient. I'm trying hard to accept what is given to me. I thought I was doing pretty well at these things. I just want to get better and I am just so frustrated and discouraged and disappointed really. This whole illness of mine has felt like a bad dream. I feel like it's been an out of body experience that it's not really happening to me. I'm not really sick...am I? For so long the doctors had no clue as to what was going on with me and so it just feels like they still don't know because it feels like I'm not getting any help at all. What does it take to be heard???