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Lori's Story...

I am in the recovery phase of Cushings Disease. Please allow me to scream, because this is as much a living hell for me as pre-surgery was, if not more. My Cushings symptoms started about 10 years ago. I have also been suffering from Cluster Headaches for about 17 years, which are treated with prednisone, which had not helped the cushings. When you look at any list of cushings symptoms, I had almost every one of them ( being female - I did not suffer from male impotence). About 2 years ago I went to an endocrinologist for a large thyroid nodule (which we have yet to address) and she immediately hit on cushings. A godsend, this woman. It took a bit to get the positive test results, and she finally had success early in 2006. A couple of MRI's later and we found the 1.5cm macroadenoma on the pituitary in August 2006. April 20th 2007, 100% successful removal of the tumor. I was put on hydrocortisone as cortisol replacement. I was taken off that completely after a month because the pituitary was functioning 100% perfectly by then. So what am I complaining about?

Over the past 2 years, my health had deteriorated so fast. I was out on disability for 6 months, the maximum I could collect, too bad after that. Fatigue, tired, couldn't move, couldn't think, ,a useless miserable blob taking up space on this planet. I am a single mother of a now 17 year old son and 23 year old daughter. Nice house, big mortgage, self employed. My poor health created a vortex that dug a grave in the ground, and grabbed every other part of my life with it. Not only did my health fail, but down went my career, business, finances, relationships, motherhood - you name it. 2 years of "dying" and everything was neglected. I woke up from brain surgery, looked around, and felt like I was in a war zone. This hole is too deep. A healthy person could never recover from this disaster. I can't do this. I just want to run away. And it just gets worse. Just because it's time to start trying to fix things, things are still falling around me. Now, apparently, the grave I dug feels like it's lined with quicksand, and I am still sinking.

My brain feels like that neuro-surgeon opened up my skull and stirred everything up inside. Between the brain surgery, the pituitary gland reversing, and the cushings recovery process, I am in a MASSIVE chemical and hormonal imbalance. I am trying to work, but I can't think clearly - I can only focus on one thing at a time. A phone call from a client can set me off track for an hour. I am paralyzed. Add the mental depression from feeling like my life is a complete failure that I will never be able to recover from, and the fact the I am now also suffering from some kind of weird post-surgery depression, and I just keep crying. I consider myself about 90% dysfunctional now.

Some of the cushings symptoms are reversing nicely. I have lost 20 pounds. My blood pressure is dropping. My blood sugar is also dropping. We have eliminated my cholesterol medication, and hopefully will start to cut back on some of the diabetes and high blood pressure meds soon. I can sleep through about half the nights now, instead of waking to pee, amenorrhea is gone, the severe 24/7 ankle edema is gone. My face is starting to thin.

I am suffering from serious muscular problems, however, which seem to be getting worse. Both feet and ankles are in braces, and I am in physical therapy 3 times a week. Chronic pain in my feet and ankles, with pain often working its way up through my legs. Muscle and joint pain, and sometines skin pain also. I have apparently suffered severe muscle wasting (weakness) over the past years, and the therapists are trying to fix me like humpty dumpty. My insurance company has another thnig to say about that, though. This pain has worsened since surgery, which bothers me, because I didn't think anything was supposed to get worse while I was recovering from Cushings. Also, my upper body has started weakening and hurting, only since surgery. My arms, shoulders, hands and fingers, are all getting more weak and painful, and going numb now. This is new, and very annoying.

There are also new vision problems, but I have a feeling they are related to new medication I am on for the cluster headaches. That was another ounce of depression, because I had a ray of hope that possibly the brain tumor might have been triggering the cluster headaches all these years, and that the headaches might go away after the tumor was removed. No such luck.

Woe is me! Thanks for letting me vent. No healthy person can understand one bit of what I am trying to convey. People look at me and assume that since I had successful brain surgery and look great, life is grand. Hell that was back in April, already - I should have recovered from surgery and moved on by now, right? If I am not productive at work now, I'm just lazy, right? In fact, I've been just plain lazy at work and a bad mother for years now. Oh, I'm getting a sarcastic bad attitude, sorry.

Time to tune out. Enough poor me.

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