Daily regimen... and other stuff, too!

So I said last night that I would write today about what my daily regimen is in here when I am trying to get healthy. Here goes!

8:00 AM:
Wake up, get weighed, get vital signs (temperature, pulse, respirations, blood pressure, pulsox), do Albuterol treatment (10 minutes to open the airways), do Pulmozyme treatment (10 minutes to break up the mucus), do Vest (10 minutes to remove and shake out the mucus), take pills (ADEK for vitamins I don't absorb, Prilosec for acid reflux, Claritin for allergies, Actigal for my gallbladder, Miralax to keep my intestines moving), and finally do my nasal sprays (Flonase to reduce swelling in the sinuses, "Deep Sea" saline to flush out my packed sinuses.

8:30 AM or so:
Take enzymes (5 for meals, 5 for snacks to help me absorb fats and nutrients that I don't normally absorb), test my blood sugar, take my insulin (I'm up to 42 units at breakfast... jeepers), EAT!!

12:00 PM or so:
Repeat Albuterol, vest, and saline nasal spray. Get hooked up to IV's (About 2-3 hours depending on how much the nurse remembers from the last time she took care of me...the bags are always overfilled and therefore require more time). Usually have labs drawn as well.

12:30 PM or so:
Enzymes, blood sugar, EAT!!

2:00 PM:
Enzymes, snack and playroom! Usually meet up with all of my doctors between now and 4:00.

4:00 PM:
Repeat Albuterol, vest, and saline nasal spray.

5:30 PM:
Enzymes, blood sugar, insulin, IV meds again.

7:00 PM:
Usually time to sneak over to visit the cool nurses that aren't on my wing! If not, then I'm in the playroom!

8:00 PM:
Repeat whole entire morning ritual plus another snack. Only pills include ADEK and Actigal.

10:30 PM:
Cafeteria opens, and I'm usually starved, so I get food. If I don't get hungry, I give my card to a nurse I like to get some free food. I know, I'm way generous... Haha. Not.

That is basically my day in a nutshell. And at 2AM, I get hooked up to IV's again. I also get more nebulizers and nasal spray every four hours that I continue to be awake after 8PM, so I try to be in bed by midnight. It is far easier to get all this treatment in the hospital, because after adding up all of the time it takes me to get my treatments done, I would be spending 8 or more hours each day taking care of myself. It is far easier to do it here due to the fact that I have nothing better to do, and I can't go anywhere and do anything extremely fun anyways.

So today, there was still not a lot new. I feel the same still, except my nose is a bit stuffier. I'm going to blame that on the saline nasal spray because I believe it may be flushing stuff out of my deeper sinuses and into my nose. My port has been a bit tender, so I can't wait for it to get reaccessed because I really feel it needs to be taken out. There's not a very speedy blood return and it stings a bit when putting a flush in it.

I talked to Dr. Steinfeld today and told him that my enzymes felt as if they were having no more effect on me. I'm getting distended again and I'm extremely hungry all the time. He said that it is a possibility with my sugars being so high that I could have paresis of my intestines, meaning they aren't moving food through too well or they are dramatically slowed down. He said he was going to talk to my nutritionist and talk about removing all concentrated sugars from my diet. No more popsicles, soda, candy, etc. I got yelled at by my endocrine doctor today when he walked in on me in the playroom eating a Strawberry yogurt. If I'm not supposed to eat my concentrated sugars, and apparently yogurt is no good either, what am I supposed to eat? Dog food? I know. I'm exaggerating. If Dr. Steinfeld tells me I need to do something though, I will listen, because he is my favorite doctor of all time. If I have to give up my Pepsi that Jose is sneaking up with my 8PM snack, then I will. But yogurt is important to me when I'm on antibiotics, so they really shouldn't take that away.

The only other thing that needs to be mentioned is my ability to single-handedly attract creepy volunteers. Years ago when I was about 13 I attracted a 25 year old volunteer which then was not allowed to come back because of his inappropriateness that, if you don't already know about, I won't tell you about on here. Today in the playroom, a volunteer from laundry barged in and was nice enough, playing with the kids, except he wasn't allowed to be just wandering around the hospital at his will. I didn't talk to him the whole time. When the playroom closed, he asked if he could walk me back to my room. I wasn't going to say "Absolutely NOT!!" So he walked me back to my room, and then walked in without invite. He talked to me for a while and told him his life story. I wanted to come back to my room and read.

The aide came in to take my vitals and I showed her my 'get him out of here' face. She asked him to leave to do vitals, and then I acted like I was too sick to talk and layed down in the dark. She told him I wasn't feeling well and he left. When he was in my room though, he asked for my Myspace, my Facebook, and my cell number. I gave him none, but told the playroom staff what he asked. He basically got in trouble for being inappropriate with a patient, a.k.a. me. A volunteer should not be asking for a patient's number. In other words, he hit on me, and that's against hospital policy, I'm sure.

Anyways, that's been my day! And that's all.