I had to change my blog settings

I just changed my settings. I put this blog up to help others with Cushing's and for family and friends to be able to catch up with what's going on. I had an insensitive jerk post on my last blog post that I still look enormous and I should eat more cake, blah, blah, blah.

Why do people not care that you've had a DISEASE that you could not help? The DISEASE made me fat, not cake! I don't even like cake very well!

Usually people don't get under my skin like that. Lately, it's just been hard. I'm dealing with my own recovery issues and starting testing on 2 of the kids is a bit overwhelming. Then I seen this jerks post and it tipped me over the edge.

18 weeks post op, down 15 lbs! Woo hoo!

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.

My head is out of the sand, and I don't want to do this!

I took my oldest daughter to her pediatrician the other day. She had fallen on the cement right before I had surgery, and hurt her knee. It was still bothering her some, so we had him check it out. That will just take time to fully heal.

While we were there, she asked me if she should tell him that she can't smell. I told her to mention it to him because we always forget to tell him that. She told him and he said, "HMMM!" He's never had a pediatric patient with that disorder (I forget the correct name, but I'm sure I'll get familiar with it) and he said one of the causes is a tumor pressing on one of the cranial nerves that makes us smell. So, he thinks she needs to see a neurologist. Since he said that, I said, "I also think she has something endocrine going on. She has the brown neck, elbows, knuckles, stretch marks, weight gain..." He knows all of my kids. We've been going to him for years. He knows she is different than the others. At least the 3 younger ones. He also knows I had Cushing's, so he said he thinks she needs to get checked out and see an Endocrinologist too. He's sending referrals into Children's, but I know she is not florid. If she has Cushing's, she is cyclical, and that will get us nowhere at Children's. I'm going to see if my endo takes her insurance and if we can get the referral to him instead.

I just want to stick my head back in the sand! I don't want to do this. I don't want to deal with this. I've seen it for years, and my husband commented once, before I was ever diagnosed, "Whatever you have, she has it too."

To top it all off and make matters worse, all of the rest of my hormones have taken their final bow. I'm replacing them now, but I just started that, and I just feel emotional. I feel like crying for no reason, or I feel grouchy with everyone, for no reason. I hate hormones! Why didn't they call them horrible moans? Anyway, add on the news of Ciera needing to test, that really makes me want to cry. I've known it for a long time, I just didn't want to deal with it. I've been in denial about it.

Zane’s 5th birthday

Zane had a fun birthday. He had been telling my cousin he wanted a Spiderman web shooter, and he’d been telling me he wanted a Nerf blaster. Before, it was a tool set. I seen some nice tool sets back in March, so I picked up his gift early. He’d forgotten about wanting tools by this time.

I got him 2 tool sets. One had the regular stuff like screw drivers, wrenches, etc. The other had a screw gun, flash light, level, etc. My cousin made him a shirt (she works at a t-shirt place) that said, “Dad’s helper”

and she made one for Carrington that said, “Dad ’s other helper”.

She also got him some work gloves and candy.

At the end of the day he said, “I got everything I wanted!” LOL! He’d already forgotten that he didn’t get ANYTHING he wanted, just recently!  Here are some cute pics. He had his safety goggles on before some of the pics and they left a red mark on his forehead and cheeks.

He was thrilled with his cake. It was actually a bunch of cupcakes together. It had a transformer on top. He was so excited about that!

 

Love those goggle marks! LOL!

8 weeks post op and new pics

I haven't really noticed looking a lot different, but I have seen many changes as in how I feel. I do notice my clothes fit looser and I can wear things I couldn't wear before my BLA. I've taken new pics in the same dress I wore before my pit surgery. I forgot to take pics right before my BLA, but I was back up to the same weight as I was for the pit surgery, so it's comparable.
I don't like how this program puts pictures in. I can never get them to go where I want them on the page. Anyway, the new pics are with the straight hair, and the old pics are with the frizzy hair. That is the one thing I've seen a huge change in, my hair! It looks much healthier now. It's so shiny. I don't have any shine spray in my hair in these pics!

I don't have bangs in these pictures either. Those are all of my new hairs growing in! People have mentioned that my hair is getting thicker! I pulled all of the new hairs down and curled them with the straightening iron so you could see how many there are and how long they are!

I've been alternating doses of hydro from 22.5 mg. to 20 mg. every other day. I'm weaning down to 20 mg. It's easier on the body to alternate doses every other day and ease your body into it! It works good for me!

Everything is going good. I wish I had even more energy. I do have more than I had before surgery, that's for sure. I still don't have enough as far as I'm concerned. My body is still healing, so it's still slow going. I hate getting worn out after doing a day of anything, or doing much of anything at all, but that's just the way it is right now. I'm still happy with my choice to have a BLA, and I feel so much better than I did with Cushing's!