Endoscopy Pro

Hi. It's me. Just wanted to update with the latest happenings. I'm here in PA again, staying with my lovely parents. I really do love it here. It's so comforting and inviting and homey. This time I brought Lexi with me! I had an inner debate for a couple weeks as to whether I should come alone, bring both girls, or just bring the baby. I decided that Cami would have lots of fun with Grandma Yospe and Daddy at home, so I didn't need to worry about her. Lexi still flies free, and I figured I could have a nice little trip with her to PA at this age like I did with Cami when she was this age. And I wouldn't be lonely or bored in these two weeks if I brought my budding toddler!

So on August 25, last Saturday, Lexi and I flew the 5 hours to Baltimore. (With a layover and plane change in Chicago, and no car seat on either flight so she got to sit on my lap the whole time). She was a gem though, and Jake was so thoughtful to call ahead to Southwest and have them arrange a wheelchair at each airport for me. I felt pretty special being wheeled through the airport with Lexi in her carseat on my lap, purse between my feet, diaper bag hanging off the back, and a carry on suitcase being rolled behind. hehe. I could have never walked around with all that crap! I did check 2 huge suitcases, but one was almost entirely filled with my formula and tube feeding supplies, which makes traveling tricky.

I was nervous to come to Johns Hopkins this time without Jake. He doesn't have any vacation time left- he's used every last day on me and my ailments, bless his heart. But it's so nice having him by my side as my "health care manager" because he knows my whole health history, every detail, every doctor, all the insurance ins and outs. So I miss him. But I'm doing ok, and am blessed to have both my parents here to help take me to appointments and procedures. And lots of kind friends here willing to take care of Lexi on those days. And Cami's having a blast at home, which makes me happy.

Today I'm scheduled for an endoscopy with a small bowel biopsy and a capsule placement. The capsule is like a big horse pill camera that they'll place in my stomach (?) and then it travels through my system while I wear a special belt that records the data. Then you can imagine how the pill exits the body. Should be interesting.

I was actually scheduled for all of this on Tuesday this past week, at 8 am, so we had to be there at 6:30 am. Mom and I were on the road at 5 am. Only to get there and discover, after my IV was in and we were ready to roll, that I was supposed to have done a colon prep to wash out my system, and been off coumadin for 5 days. NO ONE told me this. The doctor's assistant had told me to just not eat after midnight, and not take coumadin the night before. So I was pretty upset. My doctor, Dr. Stein, is good and knows what she's doing I'm sure, but this time she seemed to have made a mistake. She claimed that she didn't think I could've handled the colon prep because of my vomiting (but I'm not vomiting...haven't done so through any of this ordeal this year).

So anyways, it was a big mix-up, but they did the endoscopy anyways. I enjoyed being sedated, I must admit. The doc found that my stomach was full of undigested food, which makes her think I might have Gastroparesis. (Like a paralyzation of the stomach. Woo hooo.) And so they rescheduled the rest of the procedures for today so that I could prep properly. (Would have been easy to do that the first time.)

I've been on a clear liquid diet since that afternoon, so now it's 3 days later. Blahhh I'm so sick of broth and jello and juice. I'd been so good to live by my diet of almost no sugar, and now that's all down the drain. But the plus side is: my stomach is flatter than it's been in months! I almost feel normal. Silly stomach. Food is the love of my life, but we just don't seem to get along very well any more. What if, all this time, I've been gaining weight off of just the tube feeding since it skips my stomach and goes straight into my intestine. That means that all the food that I've so carefully eaten and prepared might have been for nothing. I'm worried that I'll never get off this stupid feeding tube and that my body will always be broken.

But I've gotta have hope. And faith. And confidence. That things will work out. That the procedure will go well today, that the doctor will be guided and led in the right direction, that hopefully we'll get some more answers. And I hope I'm on the road to healing. It seems like I am. I'd gained 20 pounds, my cheeks and butt are puffier, I think my hair is growing back a little, and I think the Biofeedback Therapy helped me. (To not be constipated and to strengthen my ab muscles since they had separated and weakened from pregnancy).

I saw an opthamologist and rheumatologist at Hopkins on Wednesday. The eye doc said that I still have Iritis, and we might have to treat it like it's chronic. 2 eyedrops every day, indefinitely. He said there are white blood cells swimming around in the fluid in the front part of my eyes, and they're not supposed to  be there. They're part of the autoimmune system that are usually dormant, waiting in the background to step in when needed. But they're out and active and engaging in "friendly fire" (Dad whipped out his notebook at this point to write down the analogy. That's his language). So there must have been something that triggered those white cells to come out, but we're not sure what that is.

Is there an underlying cause to all of this? Or is it all just going to remain a mystery? Is it a severe case of Celiac Disease, malnutrition/malabsorption and a random case of Iritis? Who knows. But as long as we can treat whatever's wrong and I can move on with my life, I'm ok with that.

Eat something good for me today. I shall continue the fasting with heartburn and dry mouth, but ever so stalwartly. :) I downed a 32 oz Gatorade mixed with a bottle of Miralax last night while watching the Republican convention, so I'm pretty set for today. Here's to another endoscopy, and hopefully a successful one.