Pain

I was able to get an appointment to see the surgeon tomorrow afternoon. In the meantime, I am on the highet dose of Fentanyl, 100 mcg/hour, which is the equivalent of 67 mg of IV morphine (the highest dose).

For Nikki J.

Update? Well, things have been hectic and that might be an understatement. I have been in the ER many many times due to uncontrollable abdominal pain. Where do I even begin??

Lets start with Tuesday, April 28th. I had an appointment to see my surgeon for a follow-up visits. It was my second time seeing her. She wanted to follow up after she recieved all my records. My chart went from thin to obese within one fax. Lucky, or unlucky, for me, I was feeling fine and when asked to rate my pain on a scale of one to ten, I gave it a zero. So the meeting with Dr. Litle was brief and we agreed to meet again in one month to further see how things were going. And then at that time she would also set up an upper-endoscopy (scoping my stomach).

So then Wednesday night rolls around and I start to get a dull ache in my left side (keep in mind the j-tube is on the left side as well). By Thursday night I am doubled over in pain and tears and it's off to the ER. In the ER they are only able to treat my pain and send me home. I'm there from around 11pm to 9am. I then procede to see my PCP Friday morning right after being discharged. He is also pretty non-instrumental in helping to resolve my pain issue. He prescribes me a medium-dose of the Fentanyl pain patch, which is commonly administered to people dealing with cancer pain, so it is supposedly "heavy duty" and should take care of the pain. But I run into a problem with the insurance covering the prescription, not to mention I'm in pain already and really need something. Without the insurance I would have to pay roughly $250. So I can't get the patch because that's way out of my budget. But later that evening the pharmacy called and they were able to get the insurance to cover it. My copay: $5! So I start the patch around 7pm. It could take up to 5 hours until it starts to work.
All of Friday night I am in terrible pain and waiting ever so patiently for the patch to start working. Midnight. 1am. 2am... now my dad is concerned because I am in tears again. The pain is paralyzing. I imagine it's close to the pain of childbirth, although I've never experienced it. It's possibly worse than childbirth because there's just no end in sight. Well, anyway, my dad takes me back to the hospital. This time we DEMAND that they do something. I pray they won't just drug me up and kick me out. But that's what they do, that's all they can do (so they say). And on top of the patch, they load me up with oxycontin and dilaudid. The room is spinning and I can barely keep my eyes open.
When I get home from the hospital I fall asleep for about an hour, then awake to blinding nausea. So begins the vomitting. For the rest of the day I am asleep or puking. Meanwhile, I miss a reunion with an old friend since I can't get out of bed. I'm pretty disappointed.
The nausea and vomitting subside Saturday night, but I am exhausted and sleeping a ton. And that leads me to today, Sunday.
I have slept a good portion of the day, didn't wake up until 3pm-ish. My pain is just unrelenting. None of the 3 strong pain killers are working... at ALL! I hope I just fall asleep soon and awake tomorrow to someone who can help. I'm calling the surgeons office first thing in the morning. Something has to be done, even if it means taking out the tube. I wouldn't wish this pain on anyone. And it would be one thing if it was lasting a couple of hours at a time, but the fact is that it has lasted DAYS! I, plain and simple, cannot handle it. Please be praying that my surgeon would take an interest in solving the problem rather than prescribing me more, or stronger, pain meds.

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.