First Things First- Health Update & Flashback

Well, I'm baaaaaack. Back from PA in all my tubeless glory. :) I'll tell you how my trip went, and then I'll save the story of the horrible plane ride home for the next post. For now, take a gander at how my hand has been for almost half the day today.

Haha it looks so creepy. Makes me chuckle every time I look at it. My hand has been cramping up all day, which makes things tricky. My feet have also been cramping up, and last night in bed I had to flex my foot forever to try to get the stupid muscles to relax. But alas, there are worse things, and I am doin' pretty well.

I wish I had some miraculous, eye-opening, mind-boggling diagnosis to reveal. But I do not. We didn't really find out anything else while I was at Hopkins. In my doctor's review of the biopsy results and findings from the endoscopy I got last week, there are words like "nondiagnostic findings", irritable bowel disease, celiac sprue, esophagitis, reflux, outlet dysfunction, gastric emptying delay, gluten intolerance, and "Ms. Yospe has a complicated GI picture".

It's ok- I wasn't expecting something definite to suddenly show its face. I was just hoping I'd have something more to tell. On the plus side- we had a lovely visit- me and my girls- with Grandma and Grandpa Toone. We flew in on Wednesday night, and I didn't have to be at Hopkins until Tuesday. Monday was my clear liquid diet and MoviPrep day, to clean out my system for the endoscopy. Clear liquid diet days are just no fun anymore...I can NOT get excited over jello and chicken broth anymore, as hard as I try. And I was rather disappointed that the MoviPrep didn't do a proper job. You're supposed to mix a powder pouch with 32 oz water and drink it over 1 hour. It's a yucky lemon like flavored drink.

 The first dose hit me and did its job. But I had to wake up at 4:30 am to drink the second dose- 32 more oz in one hour, and when I finished? Nothin. It had no affect on me. So I went back to bed for an hour or so before I had to get up and go. Most people would be at that nice "lemonade" stage by now, but like we all know by now, my body doesn't work right. So I was barely cleaned out by the time of the procedure, but luckily they were still able to do everything they needed to.

Dad took me to my appointment, and it was nice to have him there. I always kind of look forward to endoscopies, because remember how I love being put to sleep? Ahhh. So I got my IV, met the doctor and the anesthesiologist, made sure they were on board to take the feeding tube out, waited an extra hour till they were ready for me, and then they finally wheeled me into the procedure room. They were all super nice, and asking me about my favorite book, and then everything got hazy and I was OUT. Next thing I knew, I was in the recovery room with nurses trying to wake me out of my deep lovely slumber. They had done a retrograde endoscopy (in through the bottom end) and an endoscopic ultrasound (in through the top).

I remember reaching up to touch my cheek, and feeling such a relief to feel my skin, and not a piece of tape. I had that thing in for 5 whole months. From June to November- that's a looong time! In a way, it became a part of me. I became used to it. I didn't feel the tube in my throat for most of those 5 months. I forgot I had it until I'd be reminded when I'd go out in public, and people would do double takes and stare at me. Kids (and some adults) would ask "What's that?" "Why do you have that?" And most of the time I'd be happy to explain, but sometimes I just wanted to disappear and for them to leave me alone. It was also hard to have to shield my face from Lexi, because she'd try to grab it, or the tube would get caught on stuff. Not cool.

I think it also became kind of a crutch for me. With a feeding tube in, you can get away with more. You are clearly sick, which means that people will open doors, help you, give you extra sympathy, push you around in a wheelchair through the airport with no questions asked. I know, I'm bad, huh? And sometimes now I forget that I don't have it anymore, and it's like I'm missing the special treatment. This time in the airport, I had no excuse for anyone to treat me any differently (besides the fact that I'm a mother by herself with 2 kids and juggling tons of luggage), because I appear fairly normal and healthy. I think. Although I'm not sure my hair is convincing enough yet. And I have fairly puffy cheeks from taking steroid medication for the bloating. Now, if people look at me funny, I know it's just because I'm weird looking.

See? Check out this awesome bedhead. I think this was the morning where Cami looked at me and said "Mom you look funny. You look like a clown to me right now." It just made me laugh though. Love me some Cam Cam.

Two days after the procedure, I met with the blood doctor out there and got a bunch of blood work done. I'd gone off Coumadin a month or 2 before that, but since my levels were high again, she's waiting for the test results to see if I need to go back on Coumadin. The last thing I want is another blood clot in my lungs. I also met with Dr. Stein to go over the endoscopy results (Dr. Khashab did the procedure) and she said he was not impressed with anything he saw, meaning nothing stood out to him. My pancreas looked normal. They just saw all the usual stuff they've seen before, but she said the villi in the intestine are growing back, so the gluten free diet is working.

Basically, I'm on the right track. I've gained weight, and hopefully I can keep it on. My hair is slowly growing back. I'm not as bloated. I have more energy. So she said to continue what I'm doing, to stay gluten free forever, but that I can start adding foods in to my diet. Like the fruits and veggies I've been avoiding, and eggs, and soy, and hopefully eventually dairy. That would be blissful! She also said to start exercising- swimming or yoga or something. Definitely need to find a way to make that a part of my life. I've never been an exerciser, but it's time to change.

It's hard to think that exactly a year ago, I was in the hospital 5 days after esophagus surgery with a hole in my esophagus, in very bad shape. Thanksgiving night, after staying home and eating turkey baby food on my liquid diet, is when I realized something was very wrong and I got sick, and Jake rushed me to the ER. I spent the night in surgery, and the next 2 days in ICU. I fought for my life, and my family had to remind me to be strong and stay with them.

Oh how grateful I am for the love and support of family, my sweet husband and girls, friends, church members and people who hardly know me, who have prayed and fasted and thought of me in this difficult past year. Thank you so much, to all of you. I love you! I'm also grateful for how far I've come, the progress I've made, and the miracles and blessings I've experienced along the way.

I know the difficult road is not over. I've still got a ways to go. Sometimes I wonder how much more I'll have to endure. I think it's taking a toll on my sanity. And patience. And temper. And marriage. And family. I'm sick of being sick. And I don't know if it's the medication or what, but sometimes I feel so emotionally unstable. It's like there's inner turmoil, and I don't know what to do about it. I need to find inner peace and work this crap out, cuz it's like Satan is trying to bring me down when he knows I'm at my lowest. Not gonna happen, buddy. Allow me to be more dedicated in reading my scriptures, saying more sincere prayers, visiting the temple more often, and relying on my Savior to strengthen and lift me up. Because He will. And maybe I should throw some yoga in there and I'll be set. :)