Started a new medicine on march first and I think I might have finally figured out when the best time to take it is.

Updates and pictures coming soon, been super busy and stressed out.

My weekend of stress

On Friday morning, everything was finally set up and scheduled to start my new medicine. Then, all the reality of it started sinking in. All the side effects started coming to mind, all of the reasons my neurologist didn’t start with this medicine cane to mind, how long and dramatic the process of the first day on the medicine will be, what my kids might start thinking while it’s going on, how much will it screw then up in life having to see their mom go through this and many more. Sooo many thoughts that really weren’t doing much of anything other than stressing me out and in return, ruining my kids weekend. So finally, on Saturday and after nap time, I made my husband help me load up the kids and we went to the mall.

In front of Target there is a play area. It’s not huge and far from fancy, but all 4 kids loved it! They got to run around, be around other kids and even got knocked over more than a few times. They’d cry, but usually before my husband or I could even help them up, they got up and started running around a again. So I felt like Saturday was saved and not a complete waste.


Then Sunday morning cane and it was just not fun. We already knew we weren’t going to church. It was a special Sunday thing and we knew our kids would have made it far from fun or even worth it, so we were kind of just planning on staying home and maybe having 2 nap/quiet/play in your room times. We didn’t even make it to 8:30 an before I was stressed out.


One of my Uncle’s is going through some health issues and has been in hospital since Thursday, my kids always fight over a toy one of them has (who’s kids don’t do this) and I was once again stressing about the new meds. So I decided that we needed a day away from everything and still be together as a family. So, much to my husbands disappointment, we loaded all the kids up and drove to the zoo.


Thankfully, it was well worth it! They didn't have all the animals out, but the ones that were out, were a lot of fun to see! The kids got to spend the day walking, running and screaming out in the fresh air and had a blast. Although the dolphins soaked us at the dolphin show, even my autistic son loved it! The only thing the kids didn't like, was that I was mean and packed lunches (the membership cost enough without having to add on zoo food prices every time we go).

I’ve known I have MS since 2002 and sonde knowing and learning about it, I’ve usually been taking something for it. When I found out I was going to switch medicines again, I didn’t refill the one I was on. I ran out about 2 months ago and I’ll start the new one next week. 

Now the reason for this post now is because of what’s been happening since I stop taking anything for my MS (*disclosure* I’m not a doctor or nurse, I am only writing about my own personal observations). 

Since I ran out of my medicine, I have noticed fewer issues. My arms haven’t felt numb as often, my left ankle hasn’t been giving me as many issues (haven’t worn any heels above 3” because I’m 5’10 and that’s a long fall). 

I also stopped taking a pill that my neurologist gave me to help me sleep. I also stopped taking that after I ran out of my MS meds. I’ve felt like I have more energy, I’m not as short tempered, I’m not craving a nap, I don’t feel as clouded as I did and I’ve been able to remember more things. 

Now for the weird part that I honestly can’t point to one thing to say what’s doing it. 

I’ve lost weight. I know I post about working out and running after my kids, but I didn’t really ever lose much weight and I’ve been working out a lot less than I was. People have even told me that I look amazing and that I look like I’ve lost a lot of weight. Then they ask how I did it. 

I don’t know. I don’t know how I did it or why it’s happened. I could have a tape worm, all the steroids that I’ve had to take within the past couple years could finally be out of my system, it could have been the MS meds holding onto everything, it could have been a huge stress factor in my life that finally came to a head (not going to go into detail about because this blog is about MS). But I honestly don’t know. 

I will post pictures and updates about the new meds next week though! 

Sorry it’s been so long. Once the app stopped working, I became lazy and was  only posting on a Facebook page I set up to go along with this blog.
I’ll post updates on all the drama that was 2017 and what has been going on so far in 2018

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. 

       

Like Clock Work

    If you've been following my MS you know that I was diagnosed at the young age of seventeen. Like any true teenager, I reacted to the life sentence/diagnosis with true teenage fashion. I was scared/ashamed, I didn't know what it was and I wouldn't let my parents tell my brothers and sisters. When my neurologist came in and casually/matter of fact(ly) said, "Are you ready for your shots?" I said no and put up a huge wall between him, my parents and I. Then the guilty. One night when m parents were trying to get me to do my shot, i pulled out the, "You don't know what it's like to have to do this!" 

   Then the college years were even better, it was time for it denial stage. No I didn't do any crazy stuff the a lot of kids do in college (because I really was scared of what my MS would do with it and I didn't really see the appeal anyways), but I did do some things my doctors told me I needed to stop doing. I played basketball with friends, I took weight training and body conditioning classes where I wasn't exactly easy on my body and even did some running. 

   About a month or two before I turned 23, I found out I was being kicked off my parents health insurance. So I called up my boyfriend, who thankfully had already talked with me about getting married, and told him we needed to get married. 

   For some reason, he said ok. And we got married. 

    Anyhow, fast forward about 6 and a half years and we had our 3rd baby. I thought we were done having kids, because the doctors (and all of the research I had done on my own about MS) had always said that's when things start to go downhill or present itself more. 

     Then almost 6 months later, we found out we were having another baby. I was 29 and not too worried because my MS still really hadn't done much to me. There were some small annoyances that would happen, but since they didn't last long, I was fine with it. 

    The pregnancy wasn't too bad. Around week 12 my Achilles' tendons decided to take turns of which one would work right so that I could walk, but even that only last a couple months. 

    In the middle of week 35 I did what any mother would do. I made my hubby get up early on a Saturday to help me take the kids to the Santa train that was not too far from our house. I was having some Braxton's hicks, but I wanted to take me kids to see Santa. What I didn't know was that even though we live in a tiny town, there would be tons of people and a super long line out in the cold to wait in for a couple hours. Thankfully, they made it fun enough to keep us waiting until we got to see Santa. 

    Sadly later that day,  I ended up going to the hospital because I was in labor. Why does that matter much to my MS you might be asking. Here's why. 

I got to hold him for maybe a full minutes before he was taken to the NICU. 

   He was in there for almost the weeks before I got to take him home. The hospital was very nice about giving me a room to stay in while they kept my baby, but all the stress that little guy caused didn't help my MS much. 

    Moving on. Again we're going t fast forward a bit here. Baby #4 was about 3 months old and I noticed that my left side was being a little cranky and going slightly numb at times. So I decided to make an appointment to see my neurologist and get back on some meds for it. I was scared and yet thrilled when he told me that he wanted to have me take one of the pills instead of doing a shot everyday! But nothing in life ever comes easy. I was to stop nursing if I wanted to take the pill and should be able to start the pill in two weeks. Three months and lots of research about the pill later, I finally get to start taking it! I was so happy and just overcome with relief of not having to take a pill again that I actually cried. Seriously, I had the pill on my had, sitting on my bed, looking at it and crying. 

    Over the next few days I was super strict with myself about taking it. Then the hubby asked if I thought I was having any side effects. I told him that it was only the migraines (which I usually had even before the pill) and some tingling in my right hand. Then he reminded me that the tingling was under the "call your doctor if" part and I should call my neurologist in the morning. 

    I called him. Might have been one in the afternoon, but I called and left a message. They called back and said to stop taking it for a few days just to see what was still going on and what wasn't. 

    Called them back Thursday morning to tell them that the tingling stopped, but I still had some light numbness in my left arm and hand. So they said to stay off of it for the weekend and call Monday and tell them how I was feeling. 

      Monday came and I had a lot more to tell them than I wanted to. Sunday morning my lower left arm and hand and my lower left leg and foot decided to go numb. Not like usually. Not like they were just playing with me. Bad enough I actually let my husband know what was going on and even wrote down, with times, what was going on and to watch my handwriting slowly go away. 

   I ended up talking to my doctors assistant three times yesterday about everything that was had gone one, was going on and what the doctor wanted to do to treat it. 

    

      So now I'm off the pill still and get to start three days of infusions tomorrow. Then I get to do nine days of steroids and maybe another MRI since I have a new spot (sclerosis) on my MRI that wasn't there last time. And to make things ever worse, I feel like I'm in a hair style rut and can't figure out what to do about it! 

Seriously?!?!

Alright, for this post to make sense and to understand the full extent of why, I not only need to vent, but I have to start so far back.

After I had our oldest son, I did drop back down to my pre-pregnancy weight pretty quickly, but still wasn't all that close to where I wanted to be. About 10 months, later we were pregnant again with our second son. 

I've been pregnant 5 times and his was, by far, the hardest. While I did throw up the entire time of 4 of my pregnancies (I miscarried one), his was the worst. I wish I was exaggerating and being over dramatic, but I'm not. While I was pregnant with him, I was on two different types of anti-nausea drugs that really didn't seems to do anything because I was still throwing up. I ended up going to the doctor's office to get IV fluids pumped in me because I was so dehydrated and I even lost weight. Not just a few lbs, but I my weight even dropped down to what it was in college when I was working out 4+ days a week. 

(Moving on to help make this shorter...) Baby 2 decided to come a few weeks early (born at 37 weeks) and ended up staying a few days in the NICU because he had a couple issues. His lungs were underdeveloped and was jaundiced. He did seem to improve quickly and was able to leave the hospital when I did, and just needed some extra sunlight to fix the jaundice. 

He was a little small, so we took him in for weight checks, but that wasn't too big of a deal. But after 6 weeks, he was still losing weight, so I stopped nursing him and put him on only formula. He slowly started to gain weight, but was still on the small end of all his weight charts. 

Then a couple other things started that made us call up his doctor. His eyes would start fluttering and his head looked slightly misshapen. 

(This is getting long and his health history is even longer so I'll try to shorten this and catch up to now a little quicker.) Ended up, the poor guy needed physical therapy, a helmet (to help shape his head as he grew), 2 MRI's, and lots of other tests. 

Now, we'll fast forward to about almost 2 years ago. The poor guy is still in physical therapy, also  occupational and speech therapies now. We also find out he's autistic. 

We were given a ton of information with a lot of names and numbers of doctors and places that offer support and more therapy. We misunderstood the one about the major therapy they said would work best for him (ABA therapy) and dragged our feet about getting him in because money was tight. We thought they said it would take a year for him to get into one and it's about a 20 minute drive to the nearest town that had it. 

About 6 months or so after that, I finally called one to get things started. By this time, I was pregnant for the 5th time with our 4th child. He ended up getting right in and progressing very quickly. Just, now, he was gone to ABA therapy Monday, Tuesday, Thursday's and Friday from 9 am - 5 pm and Wednesday from 12:30 - 5 pm. And has been on that schedule now for just about a year. 

This year, insurance and health companies have decided to mix things up and make it even harder to pay for this by not covering as much. ABA therapy was already costing us $100 a week and so we decided to see if there was any way to get some help with all the medical bills that keep showing up in our mail. 

After months of paperwork, and some pride hurting, we found a second insurance we qualified for and a 3rd that our second son did because of all his diagnoses. 

I spent most of yesterday and today making sure all the places he goes to had all the new insurance information so that we might be able cut back on some of the bills. 

Then, today, when I went in for his ABA therapy to photocopy some of his paperwork with all the information they "needed" for it, they tell me that neither of the new insurances that we got for him could be billed through their company. 

Insert angry faces here.