Nights

These last couple of nights I have decided to start tube-feeding again. Just overnight rather than being tethered all day. Well last night I woke up sopping wet- the feeding thing popped out and leaked all over my bed. God, what a mess it was, hence being awake last night around 3am. I ruined my like-new pillow top mattress and now I can't feed at night. I'm too afraid its going to come out again. So now I'm tethered again during the day.
Some people have been curious about the surgery and Florida. Well, cat's outta the bag. The insurance company has recommended a surgeon in Florida (not sure why, but they denied my visit to NYC). So, my dad has been in contact with the doctor and it turns out he has done more than 100 of these surgeries, the doctor in NYC had only done 2 or 3. Quite a diffrence! If the referrals get done quickly, surgery can be as early as June. The thing is, we have to fly out to Florida twice, once for the consultation, and again for the surgery. I'm not looking forward to the expenses of travelling, please be praying for me because without any income this is very stressful. I just hope things work out and that they do so soon. Waiting really has been the hardest part.

Captain Negative

Well, these last couple of weeks have seen quite a whirlwind of activity. Fighting with insurance companies, fighting with my body.
I came down with pretty severe pain about ten days ago, and have made three trips to the ER resulting in three sleepless nights. It's hard for me, but it's also hard for my dad Glen and his fiance Susan (and even my mom back home, she has a lot to worry about). Just last night I awoke out of sleep in agonizing pain and Susan took me right away to the ER. My vitals were not that great, my heart rate was 150 bpm, so after triaging me they put me back in a room. That was probably the only positive experience of the night- bypassing a two plus hour wait out in the less-than-thrilling waiting room. It was thought that the cause of my pain was an infection from the j-tube, possibly an absess, so they performed a CT scan. I was also given a steady infusion of pain meds, which didn't really relieve my pain until just before being discharged. In the end, they were AGAIN not able to identify the cause of my pain and I was sent home.
I met with a surgeon today (an appointment that has been scheduled for about a week). Her name is Dr. Litle and I wanted to ask her "Are you sure you're up for the challenge?" As a patient, I should probably have some kind of disclaimer "High Maintanance" or something. Anyway, the plan with her is that she is going to review all my records and I will see her back in two weeks and probably undergo some testing if I am still having pain. She was very nice and I think she genuinely wants to help me with my pain issues.

I will continue my efforts to keep this blog updated. I think I like this better than the website I had just started. But if you're interested in seeing the website (it has some information about gastroparesis and a little info about the surgerical option) the address is on my facebook page.
I would like to say (and I will say it again and again!) thank you to my friends and family for all your support. It means a lot to me!

Fear and dependence.

Well, today was a disappointing day. A crap load of stress was unloaded right onto my shoulders. I'm still trying to just shake it off. My dad called and said he spoke with my insurance company and they DENIED my referral to the surgeon I saw in NYC. Which means I have to pay out of pocket, $450. That's a lot of money for someone who doesn't have ANY kind of income. Some divine feeling of peace came over me at that moment, and I thought "what can I do? This is all out of my hands. I'm totally depending on God, and this is right, He wants this." So I suspect that things are going according to His plan. I hope that my body being healed is part of the plan. I really do.
The headquarters for my dad's company is in Florida, so for whatever crazy reason, the insurance HQ wouldn't mind sending me to Florida to see a surgeon. I don't mind going where ever (April's Nationwide Search for a Surgeon), but I am starting to get concerned about money. My family is not equiped to handle my health crisis and I feel terrible draining everyone's resources. I don't know what we're going to do, but back to what I said earlier... I'm totally dependent on God because He's the only one who is big enough for all of this.

The countdown is officially on and I plan on using this blog more often as a way for people to know what's going on with me while I am in New York.
So the plan is that my dad will fly out to Tucson sometime between March 13 and March 16, then we will make the LOOOOOONG drive back to Rochester, NY. I have appointments to meet two surgeons in New York City and Long Island on March 31 where I will hopefully hear the good news that I will be getting a gastric stimulator implanted! That's kinda the whole point of going.
I am excited to be in Rochester during the summer because I have never experienced a summer in New York. I will also be reuniting with some friends I went to school with which so exciting!! I can't wait to see them!
I do worry a little bit about leaving. Firstly, it is going to be very hard for my mom who can't be with me. I also don't really know anyone living in Rochester, so I am predicting recovery will be a little bit harder.

Stay Tuned!

My Cure For Insomnia

I will cure my insomnia by telling boring stories of my life as of late. I mean, I just went to google something, and in the google box it automatically filled in "calcified fetus". Um, yeah, I really would like to know what that is. But more than that I want to see the pictures. So I clicked on the little "image" box and... BEHOLD... a calcified fetus. It was so, so... what's the word... engrossing. I think I stared at it for like five minutes, before continuing to search for more calcified fetus'. This woman had one for THREE years. She's like "Yeah, I got pregnant three years ago or so, but the baby never came out." Hmm.... wonder where it went? Did it just fall out and walk away, all fetus-y, "Peace out mom, thanks for the free rent!" No! No! This did not happen. The thing turned to stone and she waited THREE WHOLE LONG NASTY CALCIFIED YEARS! It's aweful to me. And it probably smelled bad. I am not doing well with smells. This whole nausea thing has got to stop sometime. Because now I start to imagine how bad something smells and how bad it could make me sick. Like check out tonsil stones. They too are aweful, and they're caused by some sulfur producing bacteria (or something like that) that along with craters in your tonsils and food particles, they get trapped. I find it wretched because I get them! Sulfur is horrible smelling! So I made an appointment to get my tonsils out because I've had this nausea thing for a good solid 7 months, and I can't deal with those nasty little things. Which, by the way, aren't always little. I pray that the ENT man will say "Yes April, we will remove yet another part of your body." I think I'm going to google that. See what it looks like during surgery. I've got to imagine you'd have the world's worst sore throat... and I am sick of pain.... hmmmm... pain, or sulfur death? Pain. I can handle pain. You could walk right up to me, punch me square in the forehead, and I would look back at you and say "Good day to you sir". And it wouldn't faze me. Or it might. The other reaction could go a little something like "AOOOWWWWWWW!!" followed by tears and moaning. And then anger. And then revenge. But not revenge, cuz Jesus said love your neighbor. So I would say to my neighbor that just punched me, "I love you. But I do not like you."
I believe that was quite a rant, enough to put me to bed like a baby.

Me so scared

Ann is talking to the dishwasher... I'm afraid. Very afraid. Maybe I should go back up to my cave where it's safe?

Freak Show Participant

I have a weird sore on my tongue. Like my taste bud is on the verge of exploding. Which reminds me of the time I drank a bunch of pepto-bismol and then my tongue turned black as night. Sometimes I like to make it turn black on purpose. That's how I'm going to make my way into the freak show. Although, there are other ways to achieve that goal. I'm going to stop there. And you should too.