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!

What is Cushing's Disease?

Cushing's Disease is caused from a tumor. The most common location for the tumor is in the pituitary gland. The next most common place is the adrenal glands. After that, the next most common place is in the lungs. The tumors can be anywhere, but those are the most common sources.

The tumor secretes a hormone called ACTH. The ACTH tells the adrenal glands to put out more cortisol. This causes an over abundance of cortisol in the person's body. What is cortisol? Cortisol is the natural steroid our bodies make. We have to have cortisol to live. However, too much cortisol causes major destruction in the body.

Throughout this month, I plan to talk about how Cushing's Disease has affected my life. It spares no part of our body or mind. It's a horrible disease!


I had a pituitary tumor. It was only half of a millimeter, but it was wrecking havoc on my entire body! That tumor was removed, and I had a brief remission of 3 months. My symptoms began to reappear, and I started testing for the disease again. I did not have new tumor growth showing on my pituitary, so we took out both of my adrenal glands. That surgery is called a Bilateral Adrenalectomy, or BLA for a shortened version.

I am suppose to be "cured", but when you take out your adrenals, you trade one disease for another. I will forever have Addison's Disease. However, I still have some symptoms of Cushing's Disease, and suspect that I have a bit of rest tissue where my adrenals use to be. Finding that is like finding a needle in a haystack.

I do not regret any of my surgeries. I am better off than I was before my surgeries! I really wondered if I would live long enough to get on the operating table, I was that bad! I felt really good for the first 7 months after my BLA, and made lots of progress. Then it all stopped, and I started gaining weight again. A lot of weight! I put back on 50 lbs. within 4 months! Then it stopped, and I've lost some of that. For quite a while now, I have not felt very good. Each day is a struggle. I don't know what I will feel like from day to day. Some days I feel half way decent, but it can change within hours. Most days I'm very tired, dragging, and no energy at all. I'm pretty sure I have Dysautonomia as well. That is dysfunction of the autonomic nervous system. The problem is, there are not a lot of doctors who diagnose it. The best in the state has a year waiting list to see him and they won't put me on the list until they have all of my records. That's a huge task! I also know that I have Fibromyalgia and Chronic Fatigue.

All in all, I'm still better than I was with Cushing's! I'm just not back to being healthy. I may never be. I've had Cushing's all my life. I believe my mother had it, and we are discovering that my children have it. It looks like it's genetic for us. I don't want my blog to see down and depressed, but I want to be realistic about how Cushing's makes us feel, and all of the aspects we have to deal with when having this disease.

Anyone reading the blog, feel free to ask about certain symptoms, and I'll answer! The whole idea of this is to bring more awareness to the public about this disease!

Cushing's Awareness!

During the month of April, I plan to blog every day about Cushing's Disease. This is to bring more awareness of the disease and help those who are suffering with the host of symptoms that Cushing's brings.

Juicing fruits and vegetables...

As part of our journey to better health, we have started juicing. We are not juicing exclusively, though. Maybe at some point we will. We are still eating protein and occasionally some other foods as well. The first few days were kind of rough. I had a very bad headache from it. I still have a slight lingering headache that comes and goes. The hubby didn't feel nearly as bad as me. I suppose that is because my body is more toxic than his, which makes sense. I'm the sick one. Hopefully, I will lose more weight while jucing, but mostly, I just want to be more healthy, and use this as a way to incorporate some of the fruits and vegetables we don't normally eat.

My office/craft room

I got my office chair done! I'm pretty happy with it. I love the material! I think you can click on the pictures to enlarge them.

                                  

This is my crafting table. The following picture is the end of the same table.

I sorted all of my brads and eyelets by color in these buckets. They were a bit big for what I needed, but I was having a hard time finding the right size and at a decent price!  So, this is what I ended up with! I would eventually like to paint the brown wood shelves these buckets are sitting on. What do you think? Brown doesn't look too bad, but I thought white would look better.

Same wall, further down. I have a table on each side of the room, by each of those brown cabinets. The one is my sewing stuff and a table to do bills/office stuff on. The other is for crafts.

 I did have enough material left over to make covers for my serger and sewing machine. They are nothing fancy, but will keep the dust off of them. They are the same material as the chair.