I just saw that Jess started a new blog. I'm proud of her. It's somewhat hard to start clear at the beginning of our medical journey. And she's so right - where is the beginning? Looking back, I now know the real beginning was many years ago. But at the time who knew those things were symptoms of something serious.
Justin & Jess both had somewhat odd growth spurts. Although they both were skinny (very skinny) little kids, for many years they seemed to grow "out" and then eventually grow "up". But the growing "up" never quite caught up with the "out." Justin gained a large amount of weight around fourth or fifth grade and developed stretch marks. That always puzzled me as nothing had changed in his life. I had been somewhat overweight as a child so I thought that had something to do with his weight. Although looking back, I really wasn't much overweight, I just felt like I was. Jess on the other hand didn't really start to gain weight until about her eighth grade year which was when all of her symptoms started full force.
I think about how when Jess was little and I'd put her hair in a ponytail. I remember how I'd wrap the band four times around the ponytail because her hair was so thin. The next summer as I was putting her hair in pigtails (which means there should of been half as much hair in each) I could only wrap the band around twice. Same bands, same size. I remember thinking that her hair sure had gotten thick.
Both kids also went from straight hair to curly hair, which Jess hates. Oddly, I didn't really notice until we were in the middle of chasing a diagnosis and I discovered that hair changes are very common for Cushies. I guess when you see someone everyday, changes are harder to see. And of course it didn't just happen overnight. I remember reading others' experience with hair changes and it hit me that my kids used to have very straight hair.
Also looking back at school pictures, Jess' especially, her face is a different shape from year to year. Looking back I wonder how I missed seeing these things. But the changes were gradual, rounder and then slimmer.
I did use to wonder how Justin could run around without a coat in cold weather. But his dad did the same. People used to stop by the store in the middle of winter just to tell me that they'd seen Justin out at recess without a coat. I figured by that age he was old enough to know if he was cold and never thought too much about it. At the time I never knew that could have anything to do with an endocrine disorder. And at some point he used to be able to sweat clear through a pillow overnight.
Here I have to add that the other day my brother mentioned how hard it was to keep a coat on his youngest daughter and of course alarm bells went off in my head. I never know anymore whether I'm over reacting to things like this in other people or if there could be a real problem. And what about one of my nephews who is overweight and now I find out he has high blood pressure (he's 20) and I know he has stretch marks. Of course this is my side of the family. I do have one cousin who I'm sure has Cushing's.
I also remember that for a summer or two before Justin's symptoms hit full force his work shirts started looking really funny. He is very partial to dark tees, (short sleeved, no collar, no cuffs). He was mowing lawns then and would of spent a lot of time sweating. The shirts started turning brown across the back and the front. It sort of looked like when you accidentally get a very small amount of bleach on a dark color. It doesn't take all the color away, it just takes some away, if that makes sense. It stumped me to see those shirts every time I was hanging up laundry. When I started reading about other people that had the same problem it hit me that probably this fading had something to do with excess cortisol. Makes me wonder if it was in the sweat and if someday there will be a test developed to measure cortisol that way.
Looking back it's so easy to see symptoms. Hindsight is great.
I also remember that when Justin was very young, four or five, somewhere in there, my sisters and I would wonder if he had ADD. He would flit from toy to toy and activity to activity in mere seconds. Used to make me tired to watch him. I would talk with Elsie & Sue about this and they had noticed the same thing. But maybe just a few days later I'd find him sitting quietly. playing with the same toy for a long time. So then I would forget about his "hyper" times. Eventually the flitting from one thing to another quit. I'm not sure I ever thought about it again until a couple of years ago in the middle of the kids' testing and I'd start thinking back to their younger years and try to remember anything about them that seemed very much different from their cousins. I'd compare them to the cousins because those were the only other kids that I'd spent a lot of time around.
And now that I think about it, when I was pregnant with Jess, we used to joke about maybe finding out that Justin would be the calm one of the kids. And I know that later Bill & I would sometimes agree that that was the case. I feel bad about this, but a lot of Jess' younger years are sort of a blur to me as I was sick with Crohn's so often. But I do know she was a very active little kid!
I've sometimes wanted to do what Jess did with her new blog and write it all down. I'd add in my feelings and how it all was affecting things in our family. But even the changes in the family happened so gradually that they were hardly noticeable until one day you realize that life is so different than it was even three years ago. And I don't mean the changes that go along with a family growing up and activities changing.
I have always felt this need to not forget what we have gone through to get to the point we are now. Which, when I think about it, really isn't a whole lot better than it was three years ago! We just now have more people with Cushing's than I originally thought, a whole lot more travel, a whole lot more medical expense and at the moment a lot less income as the oilfield is in a major slump. Of course that has nothing to do with everyone having a rare disease, but the timing really is bad.
I sometimes go back and read some of my first posts on the Cushing's board. I'm not sure why, a lot of them make me cry when I remember what life was like then. Saying that, makes me realize things have changed, in that we know what is wrong. That is so much better than when we were still in the dark and watching Justin's life disintegrate, this was before I realized Jess was also developing symptoms. Maybe that is why I reread those posts, I need to remember that things really were a whole lot worse than they are now.
Let It Be Sunday, 133!
7 hours ago