It is like a tiny chemo hug in capsule form

My day today was eventful. The medicine I take to try and prevent relapse is Gilenya. It works for me. It doesn't work for everyone but I have been on it before and my previous neurologist was really happy with the results so I didn't really consider any other options this time around. I didn't have any major side effects and Novartis is really great about payment assistance so it was my top pick. Today was D-day.

First, let me start by saying I don't like strangers in my home. I we have a small place with minimal furniture, and because I cannot get around well and we actually live here it is never as clean as I would like. That said, JP was amazing last weekend to check off my list of to-dos to help my anxiety and try and make me feel more at ease with having company in the house. Also, I accepted the fact that I'm not trying to impress these people, nor am I likely to ever see them again. So there was that.

Secondly, let me explain in super simple terms what this medication does. It is a small dose of chemo daily. The goal is to kill my immune system. The way MS works is my white blood cells are attacking my healthy brain matter. The theory of this medication is that if I don't have white blood cells (an immune system) then they won't be bored and start attacking my brain. So I am back to being an easy target for all germs and viruses and 'bugs' that are going around. I have really enjoyed not being sick with colds and sinus infections all the time, but that time is over. There is a bigger evil to fight. If I seem paranoid when I ask if anyone is sick before I come to visit. If I seem like a crazy person by not really getting too close if you sniff or sneeze please understand it is self-preservation. It will take me about a year to get back into this habit but it will come back. I also asked the girl to wash her hands every day before she comes home from school. My sweet girl is old enough to understand now. The boy is another germ-carrying-story. I will just have to suffer through again like I did when the girl was his age. We will get through this again. So anyway, back to the day of observation.
 
 The appointment was for 9am and I see a man in a suit pull up and park in front of the house at 8:30. I tell JP he is here early (yay! get it over with) but he sits outside until 9:02. He walks up and asks if this is where Michelle lives. We say yes and he says, "okay, let me go get my stuff and I'll be right back." :|


I didn't think there would be a nurse at all today because that is what I was told when I got a call Monday to confirm my appointment so that is what I told the doctor. He went ahead and started all the paperwork. I had to have an EKG and he had to record my sitting and standing blood pressure and pulse. Then I took my first dose. By this time it was 10am. My starting BP was 140/94 & 140/100 and pulse was pulse was 90. I don't remember the difference sitting and standing and honestly I'm guessing 90. It was close to that. My phone rang at 10:10 and I didn't recognize the number but figured it was confirmation from Gilenya or something. It was the nurse. She was lost and needed help getting to my house. All she had put in her GPS was "College Station" so it took her to the center of town, which is the opposite side of where basically. Which is totally fine. I walked her through how to get here. Then stayed on the line until she parked in front of my house. She came after all. Which made the doctor happy because then all he had to do was sit and record my numbers and fill out the paperwork. He had already done the embarrassing part of putting on the EKG stickies. :\  Thankfully after having kids I really don't get embarrassed and my husband was here so I wasn't uncomfortable. Had it just been the doctor I might have been a little uncomfortable. So now the nurse was here too and would be able to take my pressures and re-hook me up for the second EKG before they left so everything was great. Except, of course, the strangers in my house for six full hours. Honestly though, it was better to have the strangers in my house for 6 hours than for us to be at a monitoring center. The closest one was a little over an hour away. Which would have meant JP would take off work to watch the boy and take the girl to school and be here when she got home, AND someone would have had to take off work to take me to the observation and sit with me and be bored for 6 hours. So this way only one person's normal schedule was interrupted to do something he enjoys doing anyway which is spend time with his boy. The doctor travelled from Tyler, TX which is funny because that is close to where we are originally from and we had plenty to talk about with him, and the nurse was from San Antonio. She was a talker so plenty to talk about there too. :)
We were told to provide a desk/surface for them to use. They made themselves at home which is good because they were here for a long time. The not so good part is remember how our place is not so big? We didn't really have a lot of seating after that. We could kind of shift around and all sit in the room, but my son also enjoys having the house to himself. He actually situated himself at the kitchen table with his toys and stayed alone in there instead of staying in the living room with everyone. When he was in the room with us he would stay on the rug by the front door. He was super happy when he woke up from nap and 'those guys' were gone.

I forgot to take my blood pressure medication this morning before everyone got here which is a really good thing. After my first dose they took my blood pressure and pulse after 30 minutes. Sitting and standing. Then again at the one hour mark. Then each hour after that for 6 hours. As long as my blood pressure and pulse are not at their lowest point at the 6 hour mark then they do a second EKG and if that is okay they can wrap up and leave. Honestly that is a little skewed because A) I have been on this medication before and felt this was unnecessary. B) I wanted them to go home when they got here. C) They both had long drives ahead of them and wanted to go home as well.   It is super easy to make your pulse go up. My first reading after taking medication the numbers dropped drastically. I was at 124/94 with pulse of 64 and this was pretty consistent until the 3pm mark. (4pm was the last reading before everyone would be able to go home) I started getting tired around 2-3 which is normal for me, but that showed in my pulse. It dropped to 62. The lowest reading of the day. NO GOOD! I mentioned that and the doctor immediately said they would make sure I walked around before taking my final pressure and pulse at 4. Sure enough at 3:45 they told me to get up and walk around. We have stairs. They told me to walk up and down them multiple times. I didn't mind. I didn't want them to stay longer than they had to. Even with all the stairs my pulse only went up to 66 so it was a good thing I did some sort of activity. All in all at home was preferred to observation in the doctor's office like I did before. My doctor's office isn't an option anymore - they stopped doing it that way a long time ago according to the doctor today. I had plenty of little side effects from taking my first dose. Dry mouth, a little dizziness (but maybe that is just me right?), tiredness (probably the meds but again see reasons a,b&c above).

It is a good thing I didn't take my blood pressure medication today. I imagine they would still be hanging around if I had taken it this morning. Everyone is super glad I'm back on medication. I'm glad too, a huge part of me is still heartbroken inside because it is a daily reminder that I have this "thing" that is never going to go away or be cured. I do have hope it will shorten my relapse and symptoms I am having right now.

Callie was not really bothered by the visitors today.
They really liked her too.