Kat,
My story is a long one.I really don’t believe I was sick until two years ago. I had funny symptoms that were slow progressing one by one. And the doctors couldn’t piece it together. I first came down with the shingles that August and had it so bad I was covered head to toe in it. My recovery time was so slow and I did not heal until Feburary. Then I got very very cold and my body just went in severe pain. I was wearing a coat (wool) in August with hat, gloves, and scarf. Everyone made fun of me. I found out that cortisol runs the body temperature. Functions lots of things. Anyway, the pain was in my side over by my right kidney, and it truely felt like something was bleeding inside. It was a strange feeling. I then lost some of my eyesight in October and was seeing welders spots all the time. My vision was blacked out half way, and I could only see half way up. Then it would come back to normal and then do it again. Then in December which is very embarrasing I started lactating. I thought what in the world is going on??? My Mom’s a nurse so I told her about it. She said it’s either an etopic pregnancy, or there’s a tumor somewhere. I had lost a lot of weight really quick. Like I could lose 5lbs. in three days, and was running around like a chicken with my head cut off. Whatever I could do I did. I would go from early in the morning til late at night about 1 a.m. Scrubbing walls- you name it. I would eat about every three days as I had no appetite, the thought even the thought of food just did not grab my tank. And the less I seemed to eat the more energy I felt being burned off. I lived on water, diet pepsi, and my best friend coffee. My coffee was my afternoon pick me up for the down time. I’m 4’7 and got down to a little girls size 10. It’s one thing to lose weight and feel healthy, but it’s another to be ill and lose weight. My husband trailed me into my gyne for an appointment and the nurse treated me like I had an eating disorder wanting attention from my husband. I cried and cried and told her no I don’t feel good. She did not believe me. I asked the doctor if he could do a hormone panel. He told me at my age nothing could go wrong but the thyroid and there are 100 different hormones in the body and the expense of running something like this would cost a great deal. He assured me nothing was wrong with me and treated me like I had gone crazy. So, I asked to be tested for lupus and he agreed and nothing came of it. They passed me off the buck and missed my diagnosis big time. I’m still very angry and upset and I never went back and never called them to let them know what was found. Well, a couple months pass by I’m still with the shingles, very depressed, in pain, and now can’t sleep at night. The thought of suicide actually ran acrossed my mind more than once I was that bad. And I’m a Christian. I kept feeling I was dying it just felt like I was going under and had no help outside my husband. I woke up at 2 am one morning looked over at my husband and cried and said,"Make sure you take care of the kids real well for me." He wouldn’t say anything- he’d just hold me as I cried in dire pain. Feburary 28th came, and our town had this huge basketball tournament going on. All day long I felt doubled over in pain like an appendacitis. My husband worked second shift and finally late at night he convinced me to go to the hospital. My white count was high, iron count was low, and something was up with my bun level. The doctor there suspected a brain tumor and I laughed at him. He said it was a small hospital and did not have the equipment at that time to check it out. So, I went home. And a couple days later my G.P. admitted me in for observation for a few days. Things were coming up in the blood work that something was going on, but they couldn’t figure it out. I also had bad diarrhea all the time. my doctor comes in and I said,"Do you believe me I’m ill.?" He said yes and he was going to ship me over to Iowa city for help because he thought I was in the process of dying. So, I said send me to Chicago I have family up there. He ordered a brain scan after I got out. Then he found the benign brain tumor on the back pituitary. So, he sent me to a neurosurgeon and he said he would not touch it because it was to deep. I told him my symptoms and he wanted to send me to an endocrinologist. I’d never heard of endocrinology before so I went home and called my doctor and said I wanted to go somewhere up in Chicago to a big hospital. So, they sent me to a neurologist up there for a second opinion and I go up there and they say the same thing. They’re not touching it- it’s way to deep, and I needed to see an endo. So, they made me an appointment. I went back home in so much pain over by my kidneys that I started to throw up. I thought it was from the brain tumor, but my endo says it was an adrenal crisis starting on it’s own just had not manifested itself. Anyway, I got into her and she says it’s one of three things and we’ll find your problem soon. She ran three different types of blood work and called me at home and says-" Julie, how are you feeling?" I told her I felt like I was dying and another doctor had diagnosed me with the flu. She said you don’t have the flu, you have adrenal problems. My blood count was half of what it should be. So she started me on the steroids and said it would be up to a year before I actually felt ok. She was right. Now here I am 50lbs heavier because of steroids. But I’m here. My vision has been restored and back pain is better than it was and my body temperature is better. She told me last time I came to visit her that when I came in I was in the process of dying. I knew I was and no one would listen to me. Had they not have found it I truely believe I would not be here right now. She told me adrenal patients most of them do not like to eat. It’s one of the symptoms- food is the last thing on their minds. And that is me or was. Now I eat three meals a day. And I was treated like an eating disorder patient with the other doctor. My endo said, " Yeh, well eating disorder people don’t seek out help and you did." Anyway that’s my story. I don’t know how I got this way. When we bought our first house I had my umbrella on my back porch fall on my head and I’m telling you it hurt. That thing was so heay and I wonder if that’s what did it. I don’t know you guys, God only knows. As a child I’d get sick a lot and feel like I had the body flu, but nothing ever came of it. Just ear infections and typical childhood illnesses. Also, before steroids I would shake a lot, especially if someone would make me nervous. I also discovered I was a fasting hypoglycemic. I’m sorry I like to write a lot. Anyway that’s my story, and I’m still ill but not as bad. The steroids did help with the cortisol level. I try to remain with an optimistic attitude to keep from stressing out. My husband is been a big help through this whole ordeal and the kids have been wonderful. We keep the house pretty quiet as I can’t handle large amounts of stress, so the kids know that fighting with each other is a no no in this house hold. We all help each other out and they know I’m not well. I never tell my kids anything about getting better because I don’t want them to get their hopes up. My daughter is seven and she always prays God will heal me mystically. I believe in mystical healings but I still want her love God with all her heart even if a mystical healing is not in God’s plan for me. My thirteen year old son has been a good shoulder to lean on and a huge help with his little sister. They are pretty close. I be honest with the kids and my health and keep them updated on my health condition so they don’t worry. Kids are so cute aren’t they???? They will not do radiation on me either. That would be nice cuz the thought of being brain tumor free sounds good with no adrenal problems even better. They check my cortisol levels every three months. There’s a morning and afternoon draw. But, they said cortef shrinks this kind of tumor and it has shrunk. I guess I need to be patient. It was 1.7 cm when they found it and now it’s at 1.2 cm. They said radiation could damage other glands like the thyroid. I would like to try it, but do not want to go on any other hormone replacement. I’ve been through enough. I have slowed down a lot. I’m not afraid of the brain tumor. I fear this adrenal problem, and adrenal crisis. The only thing I don’t like is not knowing when it’s going to happen. That scares me so bad. And as a Christian I know we are not supposed to live in fear and it’s hard sometimes. My emotional strongness is not where it should be as this illness has shot me down some. I envy other people that can just get up and go go go. They don’t know how blessed they are. I always tell my husband if you woke up today and got out of bed with no problems life is pretty darn good. Anyway I know there’s hope as I keep a positive attitude. I try to anyway. I must go- hope this helped and I’m sorry I talked to much-Julie