The newest and one of the worst possible symptoms of Cushing's disease: Relationships suffer.
I am very blessed to have a wonderful, understanding wife. I dont know if she would understand what I am going through if SHE were not going through it too. I need to get her on to talk about her struggles. Anyway, this month is the one year anniversary of my mother passing away. Shortly after, in July, we found out that I probably had Cushing's. Since then, family has been growing ever distant. Some even expressed they wanted me to die and stop making Mrs. Zebra suffer (paraphrasing). It has been a rough year, but you would think that a tragedy such as my mother passing would bring the family closer together. In fact, I don't think anything has changed, if it hasn't gotten worse.
My brother, whom can be the coolest guy ever, seems to ignore that I am sick. I dont know if it for his own mental health (very likely) but a little acknowledgment would be nice. He DID invite me to a local concert which was great but I had to work and I don't think I would have had the energy. Its not saying much, but we are actually closer to each other now than growing up, but he is 5 years younger than me and we never got along that well. He was the spoiled brat and I had to work twice as hard for every bit of attention I got. He is still spoiled, but he is enjoying being single, and no bills. Be he is so wrapped up in his own life, he just glazes over me or anything I say.
My dad is the kindest person I think I have ever known. He is really my step father, but I only know that as a title. He married my mother in April of 1989, 5 months before my brother was born, and took me in as his own. We had struggles with my mother got sick 10 years ago, and he made some mistakes. But after my mother died, and seeing the personal hell he went through, I forgave him. But now that he is alone (his girl friend left, now the loneliness hurts again-been there, done that) he has withdrawn. He doesn't know what to do about me and he live far enough away that its hard to get out there. I know he cares, but he seems helpless and withdrawn. And he cant fix it like he fixes my car! So that suffers. NOTE: He is not blood related, very important
My sister.... To start, my sister did not live with us. She lived with her father, my mother's second or third husband, in Kansas while she was in Tulsa, OK. It wasn't until we all moved to Texas that I even remember meeting her, and barely. She was always around, but never too involved. One summer, she came to stay with us and found out how good she had it back home. She always resented our mother for making sure she would be taken care of. I think she saw me as an extension of my mother and resentment was transferred. She promised for years she would come hand out with my brother and I, but she was 16 and I never held it against her. Others did, but when I was that age, and a but older, I knew better than to promise those things. I learned why she was so busy! When she had her kids, they were hardly ever allowed over to visit us. But she was always there in the background. She even helped with our wedding. Helped isn't the right word. She MADE SURE the church was well decorated and stayed late that night, and after the wedding the next day to clean it up as her gift to us. I will always remember that. But she got really distant after that. Im not sure what happened. We go over and visit, and after about an hour, the air would get thick and we felt uncomfortable. Then my mother got sick, her and my sister fought for nearly 5 years and I finally got her to visit our mother. My sister took over when our mother passed. I didn't even have a chance to panic.
I really thought that this would be what brings the family close. She shut herself off from everyone. When I got out of the ER in July, we went over to try to catch the tail end of the July BBQ, but it was too late. So we told her then what we had found out. At christmas time, we told her about the information we had gathered. In February, we told her about the tests I was doing in Dallas, and the doc in Seattle. I emailed and messaged her, and when I got the courage to call, it would always go to voice mail. Now a days, I really feel shy on the phone.
All this time, no calls. No emails, no social network posts. She reads my posts, she told me so. But nothing. Even when we told her we were in Seattle, she said she didnt know. And that was that. It bugged me enough that I messaged her as to why this was going on. I have a brain tumor, but it is nothing as bad as leaving her husband and kids or "possible" cancer (which we talked about and prayed over wit her) or her hysterectomy (we visited her in the Hospital for that one too). And she starts this pissing war about how bad her life is living on her own for the first time and how I need to feel bad for her! I just want acknowledgment! I want her to be my sister! And today, she tells Mrs. Zebra that she never wants to talk to me again (3rd time in so many years).
My uncle refuses to talk to me, and my aunt is kind enough to drop a line every once in a while. She's got her own medical case to deal with.
So my own flesh and blood, sans my aunt, has seen fit to practically, and literally, disown me. Because of this damn tumor in my head. 18 years of dealing with it, and all of a sudden relationships die. This isn't even including all the friends I have lost. But friends come and go.
My inlaws, while they used to want me to forget about this disease and kick it, are coming around. My father in law is offering to help me around the house while in remission.
But my own flesh and blood disowns me.
My step father and in laws step up how they can but even they only can do so much. I haven't felt this betrayed since my mother kicked me out of the house 7 days before I left for boot camp. Even then, people not related to me took me in.
Sorry this one was a novel. I just needed to get it off my chest. Hell of a way to start my week.
Back to work...
The Weary Zebra
WRITER'S NOTE:
Ok, so no one is reading the posterous blog I post this to first for connivence, so Im throwing away the Zebra Snippet thing. For those of you who don't know, I use posterous.com to post my blogs when Im not able to really get to blogger easily. I can just email the blog post, after composing it for as long as I need to, then come back to blogger to add my tags. Sorry, not relevant to the update, but it popped in my head that I needed to clarify that.
Also, Yes, I have insurance now, but not having insurance for such a long period of time, and not having it when I started this blog, gave me the idea to not only show how hard it can be to live with this disease, but to do it with out access to proper medical care here in the states, and what it would cost to do it cash and carry. My wife does not have insurance, and she will start testing soon for Cushing's.
Thanks Beth!
Posted via email from The weary Zebra: Zebra Snippets
Here is the conclusion of my trip to Dr. Ludlum's Camp Cushie. I do have one more video from that week to post in relation to Cushing's, but I will have to do that tonight/tomorrow. For now, here is Day 5. S
