Life goes on...
Life doesn't stop because one gets a rare illness or is diagnosed with a disease. However, mine seems to be delineated by before Cushings, after Cushing's, before BLA and after BLA. Before Cushing's is a gray area. I'm not sure exactly when I started getting symptoms. Some of my symptoms went as far back as childhood but others were more recent when I realized what was wrong with me. I was 47-48 at that time. I'm sure I had symptoms of Cushing's (verified by my photo evidence) from the age of 24.
Skipping ahead past those years between ages 47 and 52 when I was going through testing, diagnosis, pituitary surgery to remove the tumor, recurrence, and re-testing/diagnosis though my BLA, I am in the after BLA era. Does anyone else see her life this way? I know most folks look at graduation, job, marriage, children, etc. as the defining moments of their lives. And my children, plus my grand-child, are definitely more important to me, but I still categorize them in the pre-BLA/post-BLA eras.
Isn't it crazy that one event can be so momentous in one's life? I sit here typing this after a day of being lonely and wishing I was closer to my family and my grandson. Part of me wants to make the big leap and just "do it". Life is short. Just do it. The other, conservative part of me says, "You have to make it to retirement. You have to have something to live on and you don't want to lose this money." And once I do this, which I will someday, I know it will be a defining moment and I'll classify it post-move. I think that's a good thing. I'm tired of living my life around a disease.
I was just thinking about this today. I was trying to explain to a coworker that I'm hanging on for dear life and that living where I live allows me to work where I do and that I couldn't handle stress of traffic and people in really urban areas. And that it would wear me down and kill me. Or that the reason my guy is working in said urban area is we are trying to get enough money together to go see the right cushings gurus. People just don't get it. And I've lost everything I had before. No friends and minimal family interactions mostly with them avoiding me because I'm now boring because I am not skinny and cool nor am I doing fun things. I'm tired of snide comments. I'm tired of only seeing my brother one time a year and then in the middle of the one time a year feast (I have no social life I make exceptions for family) I get diet advice. No sorry you are going blind... I get freaking diet advice. I try not to feel violent. But then if I respond instead of taking my verbal medicine/enema I am a mean or contentious person. If I'm worrying about what contaminants I come into contact with bcse I get sick easy, I'm called a perfectionist, and when I worry about scuff marks on the only house I'll probably have because I'm sick, same thing. I'm tired of sick. Tired of being judged and misunderstood. Tired of this life sentence.
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