What It's Like...

To live with PCOS.

Many of you who know me, probably know I have PCOS/IRS or Poly Cystic Ovarian Syndrome with Insulin Resistance Syndrome. That's a mouthful, huh? I was born with this horrible condition, and went un-diagnosed and un-treated for 23 painful years. For those of you who are over-weight, or were and over-weight child, you know the pain all too well. Imagine, if you were one of those children, yet, you did NOTHING to make yourself that way? Just imagine, eating a NORMAL, HEALTHY diet, like everyone else, yet, you gain weight in leaps and bounds. You're active, and lively, yet, you never lose a pound.

I can remember at 8 years of age, leaving Dr. Perry's office in tears. He scolded me for being fat, and treated me as if I was lazy and ate a horrible diet. It broke my parents heart. How do you put a child on a diet, that barely eats anything to begin with? How do you force a child to exercise, when she's already spending her days swimming, running around outside, and playing? It made no sense to anyone.

After that, I didn't see a doctor again until age 15. I would've have seen one then, if it *literally* wasn't a matter of life or death. In my teenage years, I was very active. I was heavier than most of the people I went to school with, but always very confident. I had accepted that I was an over-weight woman, and I was beautiful, no matter what. In PE one day, we were playing volleyball in the auxiliary gym. I was on the back row. A dear, precious friend of mine, was in front of me. He went back to hit the ball. He didn't realize I was behind him, and slammed into me. I hit the concrete wall HARD. Then, then I hit the concrete floor HARD. I was sore, but I thought I was ok.

Wrong. The pain in the time span of a week got so bad, that I couldn't walk from the bedroom to the bathroom without a walker. Finally, what was troubling me made it's appearance. A terrible cyst (a "symptom of PCOS) that had been growing deep inside of my body for (what the doctors estimate) between 12 and 15 years had ruptured. I was bed-ridden for about a month, and very sick. When the doctor told me that there would be NO chance of me playing volleyball, softball, tennis, or cheerleading, my world crashed down. I couldn't play any of these sports, because I couldn't risk taking a fall like that again, or "ripping" my skin. I know, I failed to mention that they cut an inch and a half of skin off of me in the emergency room when the cyst ruptured.

After this, I became depressed. Before the cyst, I had been taking step aerobics, twice nightly at Wellness Aerobics in Elizabethton. I worked my ass off, and ate less than 500 calories a day. I felt great! I looked good! I had gone from a size 24 to a size 14! What an accomplishment! Ask me how much weight I lost. Not ONE POUND. Not a damn pound came off of me, and for the next 8 years, the pounds added up.

After graduating high school, things went down hill, very fast. Each year from 1996, to 2003, I gained weight in excess of 375lbs. I was lethargic ALL the time. Getting out of my bed was *literally* a chore. Fighting off infection, was only something I'd heard of. If someone around me was sick, I was sick. I wasn't just sick for a few days, I was sick for a few weeks-- even months on occasion. I developed acne, and felt all around miserable.

It wasn't until 2003, that someone FINALLY cared enough to ask me WHY I was over-weight, instead of assuming that I was just some fat, lazy slob. God Bless You, Dr. Brenda Crowder, for asking me. When I told her I hadn't had but 2 periods in a year, she knew automatically what she was going to test me for. After the blood test results were given to me, I FINALLY felt some relief. There was relief in being able to put a name to what was wrong with me. There was finally a name for WHY I was fat, depressed, lethargic, and feeling hopeless.

The diagnosis was ONLY the beginning. I had no idea what the road to treatment was going to be like. There is NO CURE for PCOS/ PCOS/IRS. There is ONLY treatment available, and let me tell you, the treatment is rough. For many years, the only treatment women were able to have was in the form of a pill called Glucophage (Metaformin). It's a pill that's typically used by diabetics to help them absorb their insulin. It's very rough on your stomach, and liver, not to mention the fact that I threw up so violently, that I couldn't speak, or get out of the bed on my own the first month I began to take it.

Through the sickness, I was thankful. I was just glad that I was going to get well, or so I thought. I lost a little bit of weight, but the insulin just wasn't coming down. I got sicker, and sicker. It got so bad, that I wasn't able to work. I had panic attacks so bad, that I wouldn't leave the house, alone. I was depressed, and felt hopeless. When I looked in the mirror, I didn't recognize the person looking back at me. That wasn't Christy. That was a bloated human vessel, holding a young soul hostage.

In 2005, I was at the worst point. My insulin was so high, and I was so hot all the time. I can still remember my co-workers and managers at Proffitts' fanning me with flyers while I sat at the Clinique bay, begging me not to pass out. Yes, I would get so hot I would nearly pass out at any given time. 50 degrees wasn't EVEN considered cold (inside a home) for me.

Dr. Crowder didn't know what to do. She referred me to Dr. Joseph Kennedy (REMEMBER THAT NAME, IN MY OPINION THIS MAN IS A FRIUTCAKE AND SHOULD NOT POSSESS A LICENSE TO PRACTICE MEDICINE) who is a "so called" specialist in PCOS. I had to fill out a 15 page survey about my health and mail it back before I could even go see him. I was sick, and desperate, so I filled out this survey, and went to see him.

I walk into the office. The man doesn't know who I am, or why I'm there. After telling him THREE TIMES, I'm NOT there for infertility, I'm there for PCOS, he informs me that there's no other option than gastric by-pass. I told him, unless he told me that I was going to die RIGHT NOW without that surgery, there was NO WAY IN HELL I was having gastric by-pass. I could do it myself, I just needed to get my insulin down so I COULD lose weight. Telling him this was like speaking to a wall. He proceeded to preach to me for another 15 minutes about gastric by-pass. I got up and left. I called Dr. Crowder the following monday and scheduled an appointment.

She was appalled by what I told her. I had been reading up about a new injection, Byetta, that was used in diabetic patients to produce a certain amount of insulin each time they ate, and stopped when they had the amount of insulin they needed. I begged Dr. Crowder to let me try it. I told her, I'd be her guinea pig. I didn't care. If it didn't work, it didn't work. I didn't mind being a guinea pig for her, because at least she cared, and would take care of me.

I began the Byetta in November of 2005. For about 6 months, I was extremely sick. When I ate, I wanted to die. It's like having gastric by-pass in an injection. If you over-eat (meaning, eat what is considered a "normal" portion of food) you're so sick you want to throw up, but can't. This feeling lasts for anywhere from 3 to 5 hours after eating. I began to wonder if all of this was worth it. After all, I didn't even remember what it was like to be well. I'd gotten used to being sick, and maybe it wasn't all that bad, considering what I was going through.

If I had given up, I wouldn't be here now, telling you about this. My insulin levels were so high, along with EVERYTHING in my body not functioning properly, without the Byetta, I would probably be dead. It was a long road, 6 pills and two injections a day, a little over a year later, I'm over 100lbs lighter, and I feel good for the first time in MANY years. Things are where they're supposed to be, but I'm not out of the woods. I still have bad days. There are still days where I'm lethargic. There's still the possibility that I'll never be able to have a child. There's still the fact that because of this, my life will probably be cut shorter than the average person.

I try not to think about that. I try not to look back. I've come a long way, and worked damn hard. I'm sick, and always will be, but I'm living.

I know this was a really long post, and for those who did take the time to read it, thank you. If you're someone who's suffering with PCOS, God Bless you. I feel your pain, and know your struggle. I know what it's like to look in the mirror and see the acne, the "stray" hair here and there, to have handfulls of your hair falling out daily, and not know the "fat" person staring back at you. I know all too well.

If you have PCOS or know someone who might have PCOS, help is out there. FIND a doctor who will listen to you. Don't waste your life being sick, when there is treatment out there. There is no prison worse, than living in a sick body.