It seems to me like it's taken a long time to lose that much, but at least I am losing now!
It's been a long time since I updated my blog. I really didn't feel like it, and it seems like nothing much changes. You just feel bad, waiting to feel better. LOL! I was doing really good, then hit a rough patch when all of my hormones tanked. That started around 4 weeks post op, but took a while to get bad and for me to realize what was happening. We've got that straightened out pretty good now!
Judy, if you read this, tell me again what program works with these blogs that lets us arrange our pictures better? I thought I had it bookmarked, but can't find it. I'll add pictures to this post, but this blog always messes them up!
I'm down to 12.5 mg. of hydrocortisone. That's pretty low for someone with no adrenals. We figured out why some of us can go lower though. Estrogen levels affect it a lot. I'm on estrogen now, and I don't need as much hydro as I did with hardly any estrogen in my body!
Here's the deal for me. If I'm on more than 12.5 mg., I don't feel any kind of withdrawal. I feel pretty good, and I don't lose weight. At 12.5 mg., I'm losing weight slowly, and I hurt some. Not super bad, but like I did when I was on the Keto (the drug I took before surgery to lower my cortisol). I feel the arthritis in my neck and my bones in my hands hurt and my shoulders hurt. I get achy all over sometimes, but those are the worst places.
It's hard after surgery, in a different way. People ask me how I'm doing. They expect me to say I'm doing great. In one way, I am. I feel that I am doing great for the type of surgery I've had, and compared to what some of my fellow Cushie's go through, I AM doing great. If I don't say I'm felling great, I think that they think it was a failed surgery, and it wasn't. It's just that it takes time to heal and get better, and with this weird disease, part of getting better is feeling worse (as if that were even possible). On the other hand, if I tell people I'm doing great or I'm feeling great, they think everything is back to normal, and it's not. Then they don't understand when I still can't do stuff, or be in church services, etc. Now I'm rid of Cushing's, but I will forever have Addison's. That involves fatigue, weakness, etc. You can feel totally fine one minute, and the next, you HAVE to lay down. Those things come on suddenly, without warning sometimes. I feel 100% better than I did with Cushing's, but not 100% like a normal person. All in all, I feel pretty good, considering, but I have to be honest and not minimize that there are also rough patches. I'm just an optimistic person and I'm thrilled with the progress I've made. I don't know if 100% for me will ever be 100% like I was never sick. I highly doubt it. I had symptoms for 15 yrs. Anyway, here are some recent pics.
2 comments:
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Here's the link, Gracie. If you downloaded it, it might show up on your list of programs.
Looks like you're doing pretty good. Just wish you could feel good ALL the time.
I notice the same thing is Jess, she does great, then out of the blue (it seems to me) she is very tired and yucky.
One of Justin's friends said to me the other day "I hope they get over this soon." I told him it was for life.
YOur daughter looks just like you, both look great.
Thanks, Judy! You are right, it was still in my programs. I never thought of looking there. I wish I could find my brains in the list of programs! That is one thing that has not gotten ANY better for me. I'm so forgetful. I also get side tracked easily. I had Facebook up and left it, went and logged into the Cushing's site, then checked my blog, and someone was trying to chat with me and I never seen it until they logged off!
Ciera is the bigger one, the one in blue. She's the one who will be testing soon. She is actually taller than me, but she's standing funny in that pic and looks shorter.
Glad to hear Jess and Justin are doing good. I wish I felt good ALL the time too, but I've accepted this is a way of life now. It still beats Cushing's ANY day!
Hugs for all of you. I seen your blog about Bill's job. That has to be so hard!
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