Wow, today was a long long day, I had a really crappy sleep, didn't really eat breakfast, fell asleep multiple times, got poked a few times and now waiting for a good supper. So here is how my day went.
0315- Thirsty and got up, super ticked that I couldn't sleep and that I was hot and had a frusteratingly flat pillow
0500- Still not time to get up, but my computer has a light on it that brightens and dims and it was really bugging me.
0640- First alarm goes off and my mom tells me to go shower. No way! I finally got comfortable, but I do know that I have to be at the hospital by 0800; or so I thought.
0720- Finally drag myself out of bed and get in the shower, get dressed, do hair and makeup.
0745- In the car on the way to the hospital.
0800- Get to the hospital and find out that the nurse doesn't come in until at least 0830 or 0900. Oops...
0820- Get started on 1 of 4 tests. Fist one I had to look at a legend of symbols that corresponded to a number 1-9. Then go through a sheet of symbols and match it to the correct number. Not so bad. Next test: Putting 9 pegs into little holes as fast as i could and not dropping them. It was ok, both hands weren't great. Third test: She turns on a Cd that lists off numbers I have to add up the numbers when they are said to me. Bear with me as I try to explain... The cd says 8, 2 I say 6 cd says 5 I say 7. So I just have to give the answers and add up each of the numbers that are said to me. First off I'm terrible at math, and then its timed, and then she marks down how I do...How do you think I did? Yeah not so great. Oh and it gets better! After 1.5mins of that it speeds up to give a number every 2 seconds instead of 4. Trust me, it wasn't fun. The penultimate test (second to last test) was an eye test and then I had to walk 25 feet as fast as I could. I don't know why. But I did it.
0900- The nurse finally comes and she gives me a bit of a rundown of how the day is going to play out. Tests, blood work, neurological exams, surveys, ECG's, infusion, ECG, teaching on injections, paperwork and then I was able to leave.
0910- First neurologist comes and gives me a neurological exam. Checks my cranial nerves ask about symptoms and checks overall strength. Second Dr. comes in and checks physical health, makes sure my liver and gall bladder, lungs and heart are all ok.
0945- Start a few surveys, about my symptoms, fatigue, how it interacts and affects my life. How tired I am, how it affects my everyday activities. And a suicide/depression survey- I am fine by the way. :)
1015- Blood work was done, they took like 8 tubes of blood. Oh and another thing my veins are really really small, no one really likes them and they are hard to find.
1025-1100- I have no idea what happened, maybe I was getting introduced to the "Infusion Day Care Clinic." I really don't remember.
1130-1440 I was told that I was going to start the Ocrelizumab but first they gave me some Tylenol, and Benadryl, for any potential side affects. They also gave me a steroid for that as well. That took about 20 minutes to infuse. Then they started my Ocrelizumab at 1130. They checked my blood pressure every 15 minutes for about 3.5 hours. I kind of fell asleep inbetween the moments where it felt like the life was being squeezed out of my arm. But it wasn't too bad, I met a older guy who was really nice. It was sweet to talk to someone else who had MS and we could talk about symptoms. He helped me describe one of the symptoms when the numbness goes into my arm. He said it was like putting on a wet shirt. That totally helped and was exactly how it felt. My mom and friend were also there throughout the day which was really nice. I won't be seeing my friend for a very long time and she will be missed greatly.
1500- Got another ECG. Then the MS nurse showed me about my other drug, Rebif. This drug as I said before would be injected 3 times a week. She showed me how to do it, and how to keep track of when and where I inject it. It was not as bad as I thought it was going to be but I still don't really like injecting myself with needles.
1545- The guy I met in during the infusion offered to give me a ride to the airport. Which I was very thankful for because I really really dislike taxis. Especially because they make me car sick, they drive really jerky, and take detours to make more money. Not all that much fun. So I made it to the airport in one piece and my stomach stayed where it is supposed to.
Now... my plane is delayed, I'm exhausted, have class at 0800 (which I may skip for the first hour), my knees, back, legs hurt and I'm almost starting to get grumpy again.. just like the day started off. Kidding, I'm not actually grumpy and a pain all the time. I have actually had a pretty good attitude today and lately. Just really tired.
But anyways I am signing off for tonight.
~Just a Girl
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