Tuesday, April 3, 2012

Yikes, I'm already falling behind! Let's talk about our body with Cushing's!

I'm pathetic! Well, actually, I have a good excuse. I had a doctors appt. in the big city today. I took the girls with me and we went out to eat, and to the mall after that. We got home late. Now that it's after midnight, I'm into the following day, putting me a day behind. Oh well.

Since my appt. at the doctor today was to see about a tummy tuck, and maybe some other work, let's talk about what Cushing's does to our bodies.

The excess steroids that our bodies produce with Cushing's causes us to gain a lot of extra weight. That is the most obvious outward sign to everyone, except most people want to blame you... that you are just not eating right, or exercising enough! Doctors do it, friends and family do it! Depending on how your tumor acts, or how long you've had the disease, you may or may not have gained a lot of weight. I have most likely had it all my life, as it looks like Cushing's is genetic in my family. I believe my mother had it, and I think 4 of my 5 children do as well. So far, I'm testing 2 of them, and they have some positive results.

Anyway, back to the body. I gained 130-140 lbs. with Cushing's. Now I have LOTS of skin (still some fat too). My muscles are shot as well! After 5 babies and Cushing's, which causes muscle weakness, they are just falling apart. My skin under my biggest belly flap (yeah, that's gross, but it's a part of my life that I've just had to deal with) often breaks down. It will tear and bleed. It also gets rashes. It's quite painful. I'm sick and tired of it! It's no fun at all, and SO NOT sexy!

I feel akward in my clothes. My belly shows through my clothes. There is no hiding it. It makes me look odd! You can tell I have smaller legs, and a smaller waist. My belly skin makes me look like I have wide, odd shaped hips. It's not my hips at all. It's skin from my belly, spilling all over the place. And underwear? That's a joke! Nobody makes underwear to fit a body like this! It's just not sexy to have your belly hanging out the leg holes of your underwear!

Cushing's also causes excess hair growth for women, in places that women just should not have hair growing! I'll admit, I have resorted to shaving my face. I'm not happy about it, but I didn't like the female werewolf look either! I have no idea why this symptom did not disappear for me. Some of it did, but the facial hair did not. Actually, it did for a while, but came back. I gave up and just started shaving it. It looks much better!

With Cushing's, my breasts exploded. I was wearing an H cup! Unreal! Well, I've went down quite a bit, but now I look like I've been run over with a steam roller! Those poor old Ethiopian women have nothing on me! I'd like to have them put back in place and fluffed up a bit (by removing the excess skin and tightening). Also possibly some reduction. You know, I don't consider myself a vain person at all. I never figured I'd EVER have any plastic surgery, but I never counted on my body being stretched like taffy and left laying all over the place, either! :)

When you have Cushing's, you often have a very odd  body odor that no shower and no soap can get rid of. It has to do with the hormones, I'm sure! I don't miss that symptom at all! It's embarrassing!

With Cushing's, we also get stretch marks called striae. They can be pretty much anywhere, and they are unflattering as well. We also get boils, acne, and a lot of other skin conditions. They can be painful, and embarrassing.

We also often lose a lot of our hair, and it just turns into this frizzy, haystack consistency that you can't do anything with. Oh, and don't forget the big red face!

I'm sure that there are other symptoms that I have not listed, and I've painted a very unflattering picture. WELCOME TO CUSHING'S DISEASE! :) Please, everyone, before you make fun of that fat, sweaty, stinky, greasy, hairy person that you see, please consider their feelings, and consider that they might have a health problem that is beyond their control! They don't like looking at themselves any more than you do, and they have to live with it every single day! Doctors miss this diagnosis ALL the time! They say it's rare. That's not true! It's just rarely diagnosed! Cushing's patients often go from doctor to doctor, trying to find out what is wrong with them. They are not hypochondriacs, looking for an excuse as to why they are fat. They are very sick people who are not getting the proper medical treatment, and doctors are not listening. They only see what they want to see!

Do you know someone with Cushing's symptoms? If so, please learn all you can about Cushing's, and help them learn all they can about Cushing's. Cushie's need lots of love and support as they go through this disease!


VanessaFaye said...

My D-cups don't fit right and I don't even know if double D's will. I was hoping they would shrink but they are the one part of my body that seems quite unchanged thus far. It is one of my more annoying symptoms because they hang strangely and are heavy! I wondered if this bothered any other Cushies

monarchmomx2 said...

right on Gracie!!

MaryO said...

Great post, Gracie! You're not behind - just pretend you're in a different timezone. LOL

Kay said...

I had to chuckle about the breast comment! Mine definitely went down after my surgery too! I just want them lifted too! LOL I want to see a pic of you girlie! I bet you look great though!