Lately I’ve been going back and reading old posts that I made on the Cushing’s board and messages I’ve exchanged with other Cushies. It tells so much of our journey, sometimes things that I’d either forgotten or tried not to think about. Some of it is about actual symptoms & some are about my feelings. I’ve decided to post some of them here. It takes a little bit of nerve to throw some of this out there. I will never identify another Cushie if I’m putting up messages I wrote. If there is a link to a thread on the Cushing’s board, it can only be read by a registered member.
This looks like a good place to start.
Sometime late “09
How are you? I've been trying to come to grips with the events of the last week, and since you of all people would know, I decided to go back over your old posts on the Cushings boards.
Oh Judy..I wish I could go back to that time and give you a big hug and tell you it would all work out in the end!! The similarities between Justin and XXXX are scary...(I've only read the first few pages, no mention of Jess yet), the trouble of being taken seriously at school and by doctors, the blaming of everything on depression, feeling you're being judged as a crazy mother..he even had a pilonidal too!!
And Judy, you sounded so scared and unsure, I know you've said how this journey has made you that nothing fazes you anymore, and I can hear it in your posts. That makes me so sad.
I just wanted you to know that I'm drawing strength from what I'm reading, I know you all made it through and overcame, and I'm working on doing the same.
Sucks doesn't it? I'm glad that all those old posts are there, amazing what you can find out. I hope I can help you in some way.
For me, there was a lot of guilt involved because Jess' was being caught so early and she never had to go through as much as Justin. I kept feeling like if I was really a "good" mother I should of figured out he was sick long before things got so out of hand. But...... That is when I adopted Maya Angelous' quote "You did what you knew to do at the time. When you knew better, you did better." I try to remember that.
Of course, earlier I'd felt bad that Justin was so sick and afraid that he'd hate Jess because she wasn't. I was afraid she'd see him as a screw off because he missed so much school but quite often seemed fine when we got home in the evening. I talked to her about it one time before we knew she was also sick. She said "I just don't ever want to be sick that often, I hate being sick."
Someday I'm going to print off all the topics that Jess and I started and put them in a binder in chronological order, probably PMs and emails too. There's also a few threads that others started that I want to include. Mainly the one that XXXX started about suicide http://cushings.invisionzone.com/index.php?showtopic=26036&st=0
I sometimes go back and read some of the old ones, it helps me see that we have come a long way. It's sort of like picking at a scab, it hurts but you do it anyway!
Don't you get to the point that you feel like you think of nothing but stuff related to Cushing's? It seemed like I always had it running through my head to some degree.
XXXXX had once told me that she got to the point where she felt very little, good or bad. I thought that was so sad. Then one day I realized I was there too. Even when Bill lost his job it didn't bother me as much as it would of even a few months ago. I felt like I should be angry for him, and I was, but at the same time, I really didn't care that much.
Sometimes I think it might of been easier if Bill and I had gone through this together. We didn't. I have no idea how he felt because he never talked about it, heck he never talked. Of course, now I know he was also sick and that probably explains a lot but at the same time I still wish I would of had someone to lean on that would have the same emotional investment as me.
I feel bad for you guys. I know it's no fun. It also sounds like you can't get to a specialist quite as easy (which I guess is a pretty relative term) as we could. You know I said back when Justin first got sick that I was willing to go into debt to get him better. Good thing I decided that before it happened!
Just know that you will get to the bottom of this for all concerned.
Whoops, looks like I'm trying to write a book.
I hope that NaNoWriMo will help me in some way, just not sure how. Maybe a new focus for awhile?