Tuesday, November 8, 2016

MS med #3

      I now know for sure that I'm not on a placebo. Today, I'm going through all of the listed side effects from my new medicine and it's not fun. 



      Yesterday, I felt amazing. I woke up at 3 am (thanks day light savings), made lunches for my two oldest, got my second oldest out for some early morning snuggles (he woke up at 4 am). At 6 am, I got everyone up like I do on any other day and I felt great. I was able to get all 4 kids changed, fed, dressed and ready to go by 6:40 am! Got the oldest 2 kids dropped off where they needed to be and made it to the gym just in time for the play and learn to open. 



      I dropped my youngest two off there while I went upstairs to get my work out done. I felt and did amazing! I didn't get my 5k done in 45 minutes, but I still felt great because I wasn't overly sweaty or exhausted. 
      It was my leg day and loved it! I was feeling amazing and like a beast. I decided to just use the machines since I had taken a couple weeks off from being sick and then watching my second oldest like a hawk to make sure his temp didn't go to high ans have a seizure. 
        I was doing great and even the weight that I had been using before my 2 week vacation, was feeling super light! I did notice that if I didn't get a drink after every set that I would get light headed, so I ended up drinking all of my 20 oz Gatorade and refilling it with another 20 oz of water before I finished. 
        I was feeling great about my health and day! I went down and got the kids from the play and learn to head home for nap. Calling my husband and telling him how much fun I had been having and I still had the energy to keep going. So I did. 



        When I got home, I put the kids down for a nap and started working on getting other things finished. Finally I decided to take a nap. This is where you find out why I'm finally writing another blog post. 



        After my short 15 minute nap, I started feeling like I was getting flushed (one of the side effects from my new meds), didn't think much of it and went to get the kids up for lunch. And that's pretty much where my day started to suck. 



       If you're feeling confused or lost, let me back up a few months. In early August of this year, I finally got to take a pill for my MS instead of giving myself an injection. A week into it, my neurologist had me stop taking it and start a round of steroids to see if the medicine was causing my new issues or if my MS was the bad guy. It was supposed to be 3 days of IV fluids. I only made it one day with that part. My throat and tongue had started to swell up on my way home. So, again, my neurologist had me stop and just start taking the pill for of the steroids. Not much changed either way, so when I finished with the steroids, my neurologist had me start taking Aubagio again. I made it to day 30 on that pill because my neurologist told me to put that down of my list of pills not to take. I guess mouth soars and numbness are bad things and not supposed to happen. 



        A few weeks later, the phone calls started from the specialty pharamcy to get me on the new meds my neurologist wanted me on. I was getting 2-3 phone calls a day from them, wanting to set up a shipment date, but without all of my insurance information, so I was going to end up paying a lot of money for the meds that should have been covered. 



        After a couple months of this, with the help of another company that was going to cover the huge copay ($300) for me, the company that was going to cover it found out that I hadn't even gotten to start the medicine yet and said they were going to have me use a different pharmacy that ended up covering the whole cost. 



        I was so relieved to finally be done fielding phone calls from people that thought I was being over dramatic and making their numbers go down. I finally got the new meds, Tecfidera. 



        Of course I got them the same week I had a cold and a doctor appointment to have the last mouth soar checked out and I didn't read all of the instructions for how to take the medicine. So, when it came in the mail, I took one and off to see my doctor (regular, not neurologist). I had just gotten into the appointment room where they were taking my temp and blood pressure when I started feeling very warm and achy, like I had a sunburn. 



       To shorten things up, by the end of the appointment, my doctor knew just as much about Tecfidera and I knew. They flushing had also spread to my feet when I started walking out. I looked like I had a bad sunburn and from what we had read, I just needed to eat something. So I stopped by Taco Bell on the way to pick up my oldest from school. It worked. One chicken gorditta with spicy ranch sauce later and I was fine. Just had a nasty headache. 



         I knew I needed to eat when I took my meds and did so. I finished the "starter" dose (7 days) and moved onto the regulars one. I made sure I did everything the same, but it wasn't enough. The protien bars I would eat for breakfast with a chocolate instant breakfast to wash it down wasn't enough to stop the flushing. So I knew I needed to eat more. 



        Then, the Saturday that my husband and I had been looking forward to came and so did some unexpected things. Someone had scheduled a viewing of our house (yes we're trying to sell it) for that Saturday. So instead of making sure that I ate enough before driving with the hubby up to Chicago to see a rugby game, I spent my morning trying to make the house look as clean as I could. I hadn't realized what I had forgotten until we were on our way. 



        This is where it gets confusing and goes completely against life lessons and everything I learned in college about being a fitness trainer and eating healthy. 



       I had to admit to my husband that I forgot to eat and it has been long enough that I was flushing and feeling nauseous. We went through a McDonalds drive through (it was the closest and wouldn't hurt our driving time by much). I only wanted to get one breakfast burrito, but the hubby got me 2 and a large Dr Pepper. Ended up needing all of those before I felt better. About an hour and a half later, we stopped by Costco to grab a few things we needed and lunch to war on the way since I didn't wanted to pay stadium food pricing. I, again, ended up eating more than I thought I should have, but ended up working out great. We got to watch the entire match without me having any issues other than the slightly cold breeze coming from the lake someone put next to the Bears stadium. And we got to meet a really nice guy from Ireland that made it a lot of fun since my husband was cheering for New Zealand and the other guy was cheering for Ireland. 


      After the game though, I found out that I should have been at least snacking on something during the game. Traffic getting out of Chicago was almost as bad as driving on i80 in the Bay Area. We ended up not being able to get anything for an hour and a half after the game. By then I was flushed and thought I really was going to throw up if I even smelled food. 



       We stopped at a Taco Bell and once again, eating made everything better. I had my dinner and then ended up finishing off a protien bar before I felt better, but I was happy that I did. 



       Now, fast forward to today, Tuesday, and I'm feeling all those muscles that I worked out and my day started out with my body letting me know it's still not used to the Tecfidera. Right after I took my pill this morning I thought I was going to throw up. I had already lost a pound from before I got out of bed for the day (I'd say why because some people have weak stomaches). I was heartbroken. I had to call and tell my husband that I needed him to come home and help with the kids. 



      Now it's only 11:04 and I've lost 4 lbs I think so far this week, I'm stuck in bed with a bucket and a clear path for my weight loss reason and hoping that my body and meds can come to an agreement quickly because we don't have another frozen pizza and I don't want to go anywhere. 



       On a side note, the vanity side of me is thrilled with the numbers on the scale going down.