Why My Purse is so BIG

I had surgery 18 months ago to remove a small tumor from my pituitary gland. I'd been sick for about 12 years, and very sick for the last 4. I went into the surgery thinking that I would go back to "normal" afterwards. Well, people tried to warn me it wasn't quite that simple, but I am sometimes optimistic to the point of being dense. So I found out the hard way (which really is the way I generally find things out) that recovery from Cushing's is not as simple as I'd hoped.

Recovery from the surgery was a breeze for me. I had a surgeon that I consider to be one of the best operate on me. (This doesn't mean I liked the man. I rather didn't!) I am very thankful that I chose him to do my surgery because it was easy. He had me up walking around the ward within hours of my surgery.
My cortisol level was 5 the day after surgery, and I was having great difficulty staying awake until they gave me hydrocortisone to get my levels up. Miraculous drug! I love it! Umm...I hate it, too. But I depended on it to keep me alive for about a year, so I have to give it it's fair props.

Recovery from Cushing's is a long, drawn out affair. If the surgery was successful, cortisol levels fall to below normal physiological levels. In order to deal with the stress of life, cortisol is necessary. Without it, you would die. Cushing's patients are used to having high levels of this hormone - it's what makes us fat, turns our faces red, gives us night-sweats and panic attacks, and lots of other nasty things. When we have surgery to remove the source of all the extra, our body goes into withdrawal of sorts. So we need replacement steroids for awhile until the body gets accustomed to the lower levels. The adrenal glands stop making cortisol at all while we are on the steroid, and we have to slowly wean off of that in order to get the adrenals working properly once more. Sounds simple, doesn't it? Well, it's not! An illness or stress make us require more. So that makes the wean take longer. It took me a little less than a year to get off the hydrocortisone.

Oh happy day! Won't need that anymore! Wrong! Here I am 18 months after surgery and some days I still need it. It's not often, but it happens. And that is why I carry a big purse these days. It is filled with the life-saving drugs that I still might need from time to time. There is hydrocortisone, fludrocortisone, a syringe with Solu-Cortef, and Zofran for nausea.

I am so ready for a smaller purse.