I'm about to tell you guys something I wasn't sure I was ever going to reveal. But I got a comment from one of my long time readers who told me that her MS had been acting up and she had been getting infusions to fight it.
This made me realize that it was time to tell you my story.
When I was fourteen years old, I started getting sick all the time. I would get these horrble sores in my mouth. I would have horrible abdominal pain, vomiting and diarrhea. Because I grew up in the sticks, I went for years not knowing what was wrong.
Finally when I was nineteen, it had gotten to the point where I was so sick I could only drink milkshakes. I went to see a gastrointestinal specialist in the city an hour away and testing was done. A few days later, I got the phone call that I still remember all these years later like it was yesterday.
The doctor told me I had Crohn's disease. My reply was to say you made that up as I'd never heard of it in 1987. Crohn's disease is a disease that affects any part of the intestinal tract from mouth out. There is no cure and they don't know why it happens to some. What actually happens is the lining of the intestine should look like wavy potato chips. Crohn's makes the lining hard and like cobblestone so it's painful and hard to absorb nutrients.
This then may become infected and since there is no cure, the options are surgery to remove the bad parts and hook the good parts back together until the next flare up. Since my diagnosis, I have had ten abdominal surgeries where all but six feet of small intestine are left. I now have what's called short bowel syndrome as I don't have enough intestine to digest food to survive.
Because of this, I rely on IV nutrition called TPN as my food. Since 2006, I have been hooking up to this IV every night for twelve hours while I sleep. It is two liters of fluid and vitamins etc. So this means I get up about every two hours to pee so I don't get anything near good sleep.
I also have an ileostomy, which is a pouch that sticks to my abdomen and collects my poop. Yup we are getting real here people. I've had that since 1995. It was either that or incontinence. I had to convince the doctor at the time to give me this ostomy as at that time, I was in the bathroom every fifteen minutes and had no life. His reply to me was "who'd want to marry you with that?"
Really? That's what you base your criteria on? Yeah I have a TON of these type stories I could share with you if you guys want me to. I did get married and went back to that same doctor and said here you go, someone did marry me.
I used to spend a month at a time in the hospital before this IV happened. I have had my lungs collapse four times, I have been septic and almost died twice-literally almost died. No joke there.
One good thing I've gotten from these IVs beside keeping me out of the hospital? My boobs. HAHHA. Yup. I was always flat as hell then I gained a bunch of weight with this IV nutrition and it literally all went to my boobs. Let me tell you, I'll take that for sure!
Because of this, I am not able to do much anymore. I have no night life, I have no life really. So this blog and my nail polish are keeping me sane and feeling connected to you guys out there. If my job takes that away from me, I just don't know if I can take it.
I've never held myself as a sick person. I could easily have been on disability and welfare my whole life, but I refuse to let it beat me and keep me down. I can no longer work full time as I used to, and one day I won't be able to work enough to support myself anymore and that scares me, but for now, I can and do.
What are your thoughts on this? I thought I can't be the only one out there with an illness that affects your life like mine does. Wanted to open a dialogue so we can talk more about this stuff.
Let me know if you want to hear more stories like this.
Here is RBL Aqualily.
Until next time. Any thoughts out there?