Gotta Get the Milk!!

Today was a SUPER busy day. I had a huge to do list from my doctors and I was determined to make a dent in it. 

Chris and I stayed up until about 4am, our sleep schedule is all screwed up. I was fasting since ten so I could get all of my labs done today. Chris attempted to hide in the kitchen to eat yogurt because he felt bad I couldn't eat.

By six my sugar was tanking bad. I woke up drenched in sweat and it was in the low 70's. They put me on medication to lower my glucose levels because the steroids were making it go so high. Now that I'm on lower doses of steroids though I have to snack constantly or my sugar crashes. That doesn't mix well with fasting.

As soon as the lab opened we headed up to Hamburg to the Reading Hospital satellite lab to start getting stuff done. I had lab orders from four different doctors. Jefferson orders and what not needed to be manually entered into the computer, and then she had to sort through between all the orders for duplicates and put in a bagillion diagnosis codes. It took forever.

Phlebotomists aren't allowed to access my port, you need special training, so she had to hunt around and find a vein. My veins suck and blow really easily. I'm sure partly from heavy chronic steroid use, but also maybe because of this whole vasculitis theory. The first few tubes went okay, but the last three the blood was flowing so slow. It was painstaking until she could get enough to complete the orders. The poor million people in line behind me were probably all 'Gawrd!'.

After the blood draw Chris stopped at Taco Bell and grabbed me two breakfast taco thingers from their value menu before I died. I nommed on them on the way to the Quest lab in Hamburg. I finally got my JC titer drawn that I'm super overdue on. It has to get run by Quest because Biogen (the drug company that owns Tysabri) pays for it and uses that lab specifically. The lady that works at the Quest is really good. She can always find a vein on me no problem. When she saw my other stick she was all '???' and I explained I had just had other labs done. She tried to convince me to get my routine labs done there, but I like keeping my labs all in the Reading MyChart system. Having as much accessible in one place as possible is crucial when there's so much going on.

After that we headed home for a bit. I made a bunch of phone calls and emails to my local doctors, tried to follow up on insurance approval for Tysabri this coming Tuesday, and then Chris and I went back to bed for a little bit. We had only slept like two hours so far by that point.

I couldn't sleep very long like usual, but Chris was sleeping really good. I called my grandparents to see what they were doing and they weren't busy so I snuck back out with them. I dropped off samples at the Reading Satellite lab in Leesport, and then got some X-rays done for Jefferson. I went along with my grandmother to the grocery store while she stocked up necessities. Which reminds me of this funny video my Mom sent me the other day.Don't  react like this guy:

Just a heads up, there is a chance of snow tomorrow during the day. Don't react like this guy:
Posted by 92.9 The BULL on Tuesday, February 3, 2015

When I got home I made some phone calls to the records release department at the hospital to get some discs made up for Jefferson that I have to pick up tomorrow. The PCP called for Chris; he has to go back in on Monday to follow-up on this damn infection he has. I'm hoping they give him a note to return to work when he's there, but they think he may need another round of antibiotics. I should find out tomorrow if I'm positive for it or not.

Chris stayed up and played Saints Row: Reelected and I laid down for a nap. The busy day had me pooped. Our schedule is so screwed up. Now we're both up watching Netflix, and trying to plan our day tomorrow. I need to make a meal too. Tomorrow I have to go to the hospital and pick up records for Jefferson, and I'm hoping to go to the Social Security office. I still haven't changed my name there since getting married. It sucks that Chris is missing work, but I'm trying to take advantage of the time he's home and get stuff done. And we get to get snowed in together in our first blizzard this weekend!

I have to wait for insurance approval of my MRIs and then I have a bunch of tests I need to try to schedule all on the same day in Philly. That'll probably take about two weeks until I hear back about that. I haven't been up to 25mgs of Prednisone for very long, so we dumped me back down to 10mgs today. Anything under ten is when things seem to go to complete shit. After a few days of being back down to ten it'll be time to start tapering lower. The longer I'm under ten the sicker I'm going to get. It's going to start to get rough after awhile.

One day at a time. Hopefully some temporary discomfort will turn into permanently getting better.