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. 

My kids really do come first

Since having my baby, I've been more than a little stressed. And to make just how stressed I am even harder or let me know, my MS has decided to have some fun.

Let me start by saying that after my husband and I had our first child, I said I would stop having kids when I turned 30 and made a joke with my obgyn about seeing how many I could have until then. Little did I know I would be pregnant every year until I had my newest. Yes, there's been a ton of drama. Yes, I miscarried on one of those pregnancy. And yes, I miss how fit and thin I was when I was in college, but oh my goodness do I love my husband and kids. The most fun part, for me, about being pregnant, was that I didn't have to do my shot for MS. 

I'm now 9 weeks postpartum and really thinking I should see my neurologist to get back on some form of meds for my MS because of all the fun it's been having. Some days, I notice one or both arms have been numb. Some days, it's a foot, ankle, or even a full leg. But none of the issues I've been having with my MS and pushing through/ignoring them would have ever made me believe that I was anywhere near as strong or in control of my emotions as I proved I was yesterday. 

For the past week or so, all 4 kids have had cold/allergy symptoms. Day before yesterday, we let my oldest stay the night at his grandparents house. Then, yesterday morning, my husband and I decided to try and sleep in. We woke up at 4 to change and feed the baby and went back to sleep. I woke up again around 8 and only heard 1 out of 3 awake, and he was just playing in his room, so I thought since we were the only ones awake, I might be able to sleep a little more. 

I didn't wake up again until 9:30 and then decided, even though it sounded like everyone was asleep, that we needed to get up and get the weekend started. When I opened the door to my daughter's room, she just snored at me. So I thought it would be fun to make a short video of her snoring for when she's older. So I did and then thought I'd get a twofer and do the same to my second oldest who was still being quiet in the next room. 

I walked in, and saw him laying on the bean bag in his room and started to make the video. It's when I got closer and he still wasn't moving, even though I was talking to him, and his eyes were open, that I stopped making the video and yelled for my husband because something was wrong. I had just rolled him farther on his side when my husband came in and picked him up. We took him to the living room while I dialed 911 so we could get an ambulance to get him to the hospital and hopefully start whatever treatments or IV's he needed. 

Now, if anyone knows me, they would tell you that I'm over emotional, too sensitive, and a lot of people would also say over dramatic. I wish I was over dramatic about yesterday though. 

I dialed 911, but told my husband that he would have to talk to them because I was crying and they probably wouldn't be able to understand me.

When the ambulance got there, I knew I needed to go with him because I wouldn't be able to speak loud enough for my in-laws to hear me about what was going on and why we needed them to watch the youngest two kids.

When I got in the ambulance with my son, I honestly thought I would cry constantly the whole way, because I just had a baby so my hormones weren't back to normal thanks to nursing. When the EMT's started asking me about his health history and his date of birthday, I somehow pulled myself together and didn't start crying again until we got to the ER.

I thought the flood gates would probably open up and they'd have to wait until my husband for there to know much more than I had already told the EMT's. I was wrong. I did know though, that I needed to let my family (that lives 2000+ miles away from me) what was going on. I texted them when I had something to tell them, but also felt like I needed friends to know too, because I'm a people person and I'm weird.

We didn't know much for awhile and I told my family what the Drs told me, but to my friends and rest of my family on Facebook, I kept things pretty low key. I just put a picture of my son, after he was sedated, on Facebook saying I would be MIA for most of the weekend.

What I left out (and even had my sister leave out when she put a comment on there to kind of let people know a bit more) was that my son had had at least one seizure and more had come and gone just since arriving at the ER. I also left out that his neurologist was out of town, so the little guy got to ride in a helicopter to a children's hospital to do 5 more tests on him, and my husband and I had to drive there. 

The tears came and my husband really didn't know what to say to help me stop crying, but I told him it was getting annoying hearing the same thing over and over again about something I already knew. 

 

We knew he was going to one of the best children's hospitals and being taken by an amazing pilot (they said he has over 5000 combat flying hours) and he would be alright. What I didn't expect though was that as we were leaving to go get stuff from home before heading up, that I would somehow collect myself again and not cry until after we got there! 

He was still sedated and getting an EEG when we walked in. And they even woke him up for the last part of it. 

Since he's autistic and a mamas boy, I knew he'd do a lot better if he knew I was there and with his daddy. What I didn't know was that the bed they had him in would support me too! 

The bars were up so that he could be moved to a different floor (instead of the ER at the children's hospital), and I didn't cry again until I had to let one of my friends know I wasn't at the first hospital anymore. At least our view wasn't too bad last night though. 

Good news though, he's doing much better today and should be able to go home tomorrow with only a few new meds. 

He's been acting and talking like himself and as soon as he finishes up this bag of IV fluids, they're going to take the thing out and he'll finally be able to bend his left arm. It's been making him mad since they put it on. 

Where are the words when I need them

This morning made me feel like the white rabbit from Alice in Wonderland. From the time I woke up, till around 1 pm, I was cooking, driving, changing diapers, getting kids dressed, eating, feeding and loading kids in and out of the green monster (our van). Yes, I got a lot done and was so relieved to finally get back to the house and call nap time.

Half way through nap time, my husband sent me a text with a link about a man in the UK that was diagnosed with MS about a year ago. It peeked my interest, and, since I never really get to take a nap during nap time, I decided to read it. Honestly, I thought it would be about a lady with MS, since it's not very common for men to be diagnosed. So it was very interesting, and I couldn't stop reading it. It wasn't the usual article I've read for the past 13 years (that's how long I've known I have it), it was from a man's prospective, a son and a father, but at the same time, it address almost everything I have gone through. Seriously. It even reminded me of a time a couple years ago when I was talking with some ladies I know. But before I tell that, here's the link if you want to read it. http://www.newstatesman.com/lifestyle/2015/06/alphabet-months-year-living-multiple-sclerosis

Alright, I'll start off by telling you that about 5 or more years ago I heard a story about Fred Astaire talking to some actors and actresses about a serious topic. Marily Monroe walks up and tried to join in on the conversation with only hearing a little bit of what they were talking about. She was completely off on the subject and Fred just looked at her and said "sure" and then went back to talking to the other people, making Marilyn look and probably feel dumb. Anyways, that's pretty much how I felt when this happened. 

The ladies and I worked with the young women at our church. We were discussing what all we could do to help and teach them new stuff we got. I climbed in, wanting to tell them something that I didn't know, myself, at the young women's age and wanted ideas of how we could get them ready for it. Instead, I ended up telling them about something that happened to me when I went from going to church with my parents to the (what we call) singles branch. (If you want details about that, feel free to ask me) two of the ladies looked at me and said, "thanks for that story," and they moved on to talking about other things. I was so mad at myself for not saying anything even remotely close to what I wanted to say, I just sat there through the rest of the meeting. 

A year or so later, I was asked to be a Sunday School teacher with the same age group at church with another lady. Now ,you have to understand, a lot of people, for some reason, think that I'm anything but shy. Honestly, I am. I am shy. I love being around people, but if there are more than two people looking at me at once, my face goes completely red. Heck, even if one person is looking at me too long while I'm talking to them, I turn red and usually just stop talking in hopes they'll look somewhere else. Anyways, after I agreed to be a Sunday School teacher, I messaged the other teacher and asked her to help me. I asked her to keep me on track with whatever I first started talking about, if I happened to start going off on something else. She was a teacher, degree and everything, and she really was a big help. 

So I'm not sure how much of this makes sense, but there's a little more insight to my day and thought processes. 

Here we go again!

Well this summer has been one for the journals. The past couple months have been the most life changing and stressful that I think I have ever gone through. And it's taking its toll on me and letting my MS have some fun.

First, it started with one of my kids being diagnosed with autism. Wasn't a big deal to us, we still love him just the same and were kind of expecting that to be the case. 

Then, a few weeks before our baby turned 6 months, we found out that I was pregnant, yet again. Again, no bill deal to us, we have clothes, toys, books or whatever for either gender now. 

Next, came a text from my mom saying my dad had been in a car accident and was in the ICU. He ended up being just fine after a lot of pain meds and even more rest. 

But here is why it's been such a big deal. Money. For about the past year, we have been planning, shopping, and trying to fix our house up to sell. I know money is a problem for everyone, and not everyone can do things they've planned anyways, but here's the big kicker. I'm not asking for money, help or sympathy, just a chance to explain my stress. 

Since we bought our house almost 6 years ago, we have done a lot of fix it up to what it is now, just still wanted to put in hardwood flooring and replace the tiles on the kitchen and bathroom floors. After trying to level the house off with cement blocks, we finally settled on it'll take too long and best just to replace the carpet and go with linoleum for the kitchen and bathrooms. Again, why money is an issue here. 

When I'm pregnant, that costs $155 a month till I deliver the baby. Not a huge thing, we've done it before. It's the autism part that costs the most. My son has already been getting 3 different types of therapy for at least once a week for a little over 2 years now. Paying for the gas was a pain, but that is also one of the HUGE reasons to sell the house, just now, we have an even bigger one. Now that he has an official diagnoses of being autistic, the insurance company is more than willing to pay for a lot more. He gets to start a fun new therapy (new for him) called ABA therapy. The insurance company will cover unlimited visits (which is amazing), just we have to pay the co-pays. Doesn't sounds too bad right? Didn't to us either, till we were told he'll need it 5 times a week. You do the math, or think of how much you'd pay a month buying a nice BMW convertible. 

So, while we've been trying to deal with raising our 3 kids. Taking kids to dr appointments and my own dr appointments, all while being pregnant, my husband is also trying to go to school to get an MBA. I also ran off to help my dad after he got out of the hospital, taking my my youngest with me. So ya, the flooring hasn't happened yet, and we still need to either repaint the house or just do some touch up. My arms go back and forth on which one is going to be numb for that day and/or time. My Achilles, for some odd reason, refuses to let me point my toes, and my left ankle is swollen and sometimes hard to walk on. 

But we're still going and we'll get through this, just another obstacle in life we get to deal with as a family. 

Today started with tears

Before I get going, let me just say, I am one of those people that hates to cry (gives me a nasty headache) and I usually deal with hard stuff with humor. 

I am a stay at home mother of three. My days start off with me waking up and my husband has already been at work for a couple hours. Today I woke up (husband was already gone to work) and all 3 kids were still sleeping. So I thought I'd check Facebook. Bad idea. There was a video someone shared about a couple that lost their baby (made me cry of course). Then I started thinking about my kids and how lucky I am to have them in my life. 

My mind trailed off to other things that have been going on lately too. A lot of people have been asking me if we're going to have another to keep things even at 4 kids. I tell them I just had a baby and I don't know. The truth is, in my mind we already have 4 kids. 

On July 13, 2013 I has a miscarriage. I knew it was coming from the irregular heart beat on the ultrasounds and bleeding. I lost the baby while at home. My husband and I cried and held each other for at least an hour and I called and talked to a friend for probably another hour. 

The next day I wasn't sure what to do with the same fetus that we had lost. So I decided to put it in the box my wedding right came in and we buried it. 

Why the reason for this long sappy story? Because while I have been thinking about that baby I lost all day, I have also gotten more done in 3 hours trying not to stress about remembering when this happened, than I have all week. 

My MS scares me so bad that I go above and beyond to make sure I don't over stress or make myself depressed without even thinking. I didn't start crying and think, oh no I better find things to distract myself. I just got the kids out of bed and kept doing things. 

I've seen a lot of things about how a decease doesn't have a person, they have the decease. While that might work for some people, I'm alright with it either way. I know that after I found out I have MS that I started working out like crazy to keep it from doing anything. I even changed my major or college to help deal with it. 

Anyways, I know that I have become a better person, harder worker, more motivated and even happier all because of it. It shapes my life and a lot of the choices I make in it. 

Avoidance and denial

Last week I took a picture with even intention of using it for this blog. I'll even finally post it. 

 That night I was thinking, "I need to work out." So I did. I had lots of reasons why I was doing it that night, a lot more than usual. Mostly my back. The upper half of my back is numb and has been that way for about a year now. Bad part, and why it was pushing me to work out that night, is that now all of the upper half of my back feels numb. 

I also had a baby (7 weeks ago at the time that picture was taken) and was told by my doctor that I didn't have any restrictions. Now that really should be put a bit differently, or at least I should know better. I have been feeling fat and out of shape, so I decided to do some light jogging in place in the safety of my living room. Laugh all you want about jogging in place at home, but it works. I did really well! I lasted half way through my work out playlist and decided to stop while I was ahead. I'm guessing it jogged for about 20 minutes with hardly any discomfort to anything (both my knees are bad by the way and swollen). Since that night though I've only done some light weight lifting and some leg work at home. 

Here's where things get good. Last night my husband basically kicked me out of the house to go to the gym and work off my cabin fever and the stresses of being a stay at he mom with 3 small children. He knows that after I work out I really do feel and act like a new person, also the woman he married, and not a stressed out quick tempered Irish girl. And I also remember back when I was 17 and told that I couldn't do anymore high impact sports (running, basketball, volleyball, eft) with MS. So what. I didn't really listen then or in college. What was so wrong about doing it now? I just had a baby that's what's wrong. Although it had been 2 months since I had my baby my MS and body were very quick to tell me no. 

When I got to the gym I was feeling pretty good and was going to just do my regular thing while there of starting on the treadmill for a quick warm up,then onto the machines and free weights and finish with a stationary bike for my cardio/cool down. HA! I got on the treadmill feeling a little chubby/impatient and remembering how well I did with jogging at home. So instead of a brisk walk at 3.5, I thought I'd bump it up to 4.0. I forgot to stop at 4 and went to 4.5 and ended up jogging a little faster than what I thought I was doing at home. About a minute later my left leg started feeling a bit strange. I thought I'd just push through it. (Here's the good part) At 1 minute 47 seconds my left leg went numb. It only took about one minute and thirty seconds for my MS and body to bring me back to reality. 

I kept my warm up to just 5 minutes (mostly because I didn't want to end up being one of the fail videos that my husband watches) and then went on to work on arms and back. 

 As my work out went on I kept thinking about if I should tell my neurologist about this or not. I opted for not because it would end up costing me more for the physical therapy and steroids that would just put more weight on me.

 Thankfully, the feeling in my leg slowly started to come back during my cool down, but instead of doing that on a bike, I decided to use an arc climber. I was doing great for the fist 5 minutes. Then I started to slow down and things started getting a little fuzzy. Then I started remembering an article about a runner with MS that would run to her coach and collapse after she finished and why I usually use the bike. I grabbed the arm supports and prayed I wasn't going to pass out. I didn't. I slowly got down and casually walked to the front desk and asked for a coin to use the massage chair. After that I used the hydro massage bed and felt much better. 

Then I had the nerve to drive home. That's when I found out that not all the numbness was gone, it just decided to take up camp in my left arm. Yay....

Out of love?

Not sure how I feel about Twitter. I made an account with then and I read something on there that someone wrote about how they tried to look like a Victoria secret model. On there she talked about all the work out that they do and as a personal trainer myself and kind of limited due to my wonderful MS, I'm usually very picky about my work outs. I know I don't look anything like a trainer now, but years back (don't really want to say how many) I did.  

There was one of the work outs she talked about that I thought looked like it might be fun. I told my husband about it and stupidly put the DVDs on my Amazon wish list. My husband ever so lovingly bought them for me and tonight I tried one. 

As you can see, cameras on cell phones have gotten better and this thing hurt my muscles pretty good. 

Here we go!!!

 About 6 weeks ago (Thursday) I had a baby. She was 4 weeks early, but her weight was good and she seemed to be doing just fine. Then we went for a weight check. Her weight still wasn't up to where it was supposed to be. Enter a little bit of stress for this mommy. 

We had another week to get her weight up before her next check, but it was the same. 

Her doctor told me that it was probably because I wasn't eating enough calories. So I started eating more and we started giving her some formula a couple times a day. And finally the next week (4 weeks old) she was 3 ounces more than her birth weight! 

I was so happy but still worried she would lose weight if we stopped using any formula once or twice a day. 

But yesterday my doctor cleared me for whatever I want! So tonight after my husband and I put the boys in bed and put the baby down for a nap, I ran away to the gym for the first time in months! Oh my gosh did I lose a ton of muscle! (Don't laugh too hard at the next pic, I'm an almost 30 y/o with braces)

I knew I needed to come back. The first clue I had was not only my saggy belly, but the numbness in my back was starting to spread from just part of my upper back, to all of the upper half of my back. But I can't panic. That would make me stress and that would just make things even worse and lot faster than if I just stayed home. So I'm at the gym trying really hard to take it easy and slowly work my body back into things, but man is it hard. 

MS + pregnancy = temporary remission

I wish. I've been told since I was 17 that MS goes into remission while pregnant. Last week I found out,that for me, that's completely untrue.

 One of my sisters came to visit for a few days and I was very excited to have her visit. Only down side to it was that I think I got even less sleep than usual. I was worried because instead of her sleeping in one of our two queen sized spare beds, she slept on the couch. I felt so bad for her! Not only that, but my 3 year old, who is that champion of staying awake, kept her up. 

My weeks are already usually busy with taking the boys to their usual stuff, but since my sister was here and it was her first time getting to visit me since I got married and moved to this side of the country (I still miss the west coast by the way), I wanted to show her some stuff. Really all I got to show her was a few restaurants and a museum, but still it was more driving than usual. 

Anyways, back to what I was talking about to begin with. The morning of my sisters only full day of getting to visit, I noticed I had a bit of a limp. It wasn't just any kind of a limp though. This was a limp I hadn't felt since I was 16 years old and was about to have my first full blown MS "attack". It wasn't always there, I could still walk, drive and pretty much chase after my boys. So I brushed it off. Even after telling my sister about it I wasn't all that worried and was actually dreading telling my husband about it more than anything else (he's really good at the worrying about me thing). I did tell my sister there wasn't much I could do about it. If I told my neurologist, he would just ask me how much sleep I've been getting. 

We didn't get to see my husband until around 6 or 7 that night and ate out. While at dinner, I thought now might be a good time to tell him about the limp. He ended up taking it really well! He was more worried about me having a good visit with my sister than the limp (also helped I wasn't freaked out about it too). 

I'm now 34 weeks pregnant and still have yet to tell my neurologist about this one because it won't really do much good. He'll just want me to come in for check ups and I'll tell him I don't want any steroids and he'll tell me there's nothing he can do to help me then. We have gone through it with the last two pregnancies I had and I don't really feel like going through it again. 

Change of plans

So I was training and even talked my husband into letting me join a gym to do the bike MS in Seattle with one of my brothers. Was only doing it for about a year when I found out the week before it was time to go that flying standby to get there was going to be more than a little hard. I had also talked my husband into going with me since I don't really make it out to the west coast very often to visit my family. So it was going to be all four of us flying. That's not all the drama though. While I was training, I found out I was pregnant. I was going to do it anyways, I kept training and even had an ok from my doctors, but then my brother who I was going to do the ride with decided to go and have surgery. Knocked the distance down a bit, but I was still up for it. The night before I left I was texting my friend who worked for the airline I would be flying on and skyping with my brother deciding if waiting till the last flight of the day to only maybe make it on was worth it. We decided it wasn't with two young children and a husband that already felt bad for taking time off work to go play. So we went to California instead to visit my parents. 

I felt bad for all the money I had spent on training and everything I bought just for training just to switch things up at the end. 

The pic is of my husband and youngest son on the second plane to my parents. I also thought that to make it up, I would not only take my husband to see places I used to play at when I was little but also try and get some exercise while I was there. 

My MS on the other hand seemed to think I must have been changing climates, elevation and stressing too much because the first few days I was there it decided to remind me that I still very much have it. From my left elbow down went numb and my right arm felt heavy. Always a fun thing to have happen when you have two small children and a mom that was already stressing about me still throwing up half way through my second trimester. But me being the stubborn Irish girl I am decided that it would probably be best to just ignore what was going on with my arms and have fun anyways. So my parents and I took my husband and boys to a nice look out. 

 

And then we went on to hike through an old lava tube. 

After getting to the other side we missed a turn and ended up hiking a little on the pacific crest trail. 

If you're wondering why it's black and white it's because my boys had my phone and played around with the camera. 

The next day or two I decided to do a little more hiking and face my fear if heights a little bit by talking my dad into driving us up a mountain to hike up to yet another look out. 

We went for short walks every day and really wasn't the same as the bike MS but I figured with my MS reminding me it was still around and all the extra walking I did was good enough. 

So how do I get down from here?

So, this is going to be mostly venting. My personal life experience with MS has been pretty tame so far, but then again I'm also only 29 and have only been diagnosed since I was 17 years old. While I'm pregnant (like I am now) my MS is "supposed" to be pretty much suppressed and not doing anything and I don't have to do my shot. Well, not always the case it seems. Some days it's hard to life one arm or the other and sometimes it's one of my legs that has decided to act a bit strange. But! That's not what I'm wanting to vent about. It's about one of my friends. 

With MS it is more likely to have it of you live on a colder climate, are female and of African decent. This friend of mine is "lucky enough" to have all three of those things. So while I've had one huge attack with MS that I can speak of, she has had a heck of a lot more happen to her. She has been paralyzed from her neck down and had to learn to use all those muscles again. Surgeries on at least one of her shoulders because the muscle tissue had died. And now she lives in a place that's honestly putting her through hell. 

To help prevent an attack and treat one, doctors give people with MS steroids to counteract things. Yay right? Wrong. I has to take some once and gained 10 pounds on one week while only having to take them for two. Not only was I upset about the weight gain, but it too a full year to work off those 10 pounds from the steroids. 

Why did I mention that when I'm talking about my friend? Because she's had to be on steroids a lot more than just once. She now has a wheel chair to get around in because her MS likes to pop up a lot more often than mine has. Granted she is a bit older than me, she still has to use a wheel chair before she's even 50 years old. 

She recently got divorced and had to move to a new apartment. When she first moved in she was told that they would put a ramp in for her to be able to get to and from her car and apartment. At least a year later she still has to ask someone (usually one of her girls if they're with her that week) to grab her chair while she uses a cane to help her walk down the 5 or 6 steps to her car because the "awesome" place she lives is on a hill. 

Lately she's been working with a lawyer to either help get a ramp put in or help her out of her lease, but that lawyer has taken some time off because their daughter is going to have or has had a baby. I'm sorry but I thought that if you had a client that needs help, you would at least get someone to fill in while you go spend time with your family. 

Things have been so hard for my friend that she is about ready to give up custody of her two girls and move to another state so that they won't have to deal with their mom living like this. While I don't agree that her girls shouldn't have to help clean up or keep the apartment clean, she doesn't want to make them do everything. But I think there has to be a way to help things move along faster like putting in a ramp and yes him her girls to clean up. Just seems like giving up is the wrong way to go about this.