I didn’t get as many posts in for Multiple Sclerosis Awareness Week but I hope that someone read the posts I did share and perhaps learned something! If you want to help create some buzz here is an easy way that doesn’t cost you a dime!
- Pinterest Users: I have created a board that you can repin and like the posts I have pinned.
- Facebook Users: I would love for you to post the link to the Pinterest page so people can read any of the articles.
- Twitter Users: I would love for you to tweet this message for me and share the articles too! I’m spreading awareness 4 Multiple Sclerosis w/ some great articles from @mallerysdeals. Please RT 2 help the cause. https://bit.ly/zueQIu
You might not think it is much but I appreciate you taking a moment and spreading the word. I bet if you shared the link on Facebook you just might find that one of your current friends is connected but you never knew.
Here are some of the articles about this disease for reference:
- Starting Back on Tysabri
- Breast Feeding, Cytoxan, Infertility?
- Copaxone < Tysabri
- Starting Copaxone
- Multiple Sclerosis Relapse
- I’m Not Dumb.. I Have MS
- Working Out
I remember back when Michael and I decided we wanted to get pregnant. We were just counting down the days until we were married so we could start trying. I was currently on Tysabri and is it sort of an unspoken rule that you shouldn’t get pregnant on it. Each month I would go for a treatment I would have to take a pregnancy test just to be sure. That sort of takes all of the fun out of it though and I didn’t listen!
I stopped taking my birth control in September and we got married October 2nd, 2010. Well it turns out that tracking your ovulation is a sure fire way TO GET PREGNANT because 12 days later I conceived my precious little baby. Who would have thunk it? Needless to say my neurologist was not happy.
Now I had to stop Tysabri and taper off of my high doses of Cymbalta and Neurontin. You might be asking yourself why I didn’t just wait until I was off before getting pregnant? The plan was to go off for a month and then start trying because Tysabri stays in your system for a month and play each month by ear on how I was doing without medication. What if it would have taken me months to get pregnant and I just kept getting worse? What would happen if I relapsed bad from no medication and then the doctor decided I shouldn’t get pregnant because I need medicine? I will be honest… I was scared of the possibilities.
I felt FANTASTIC during my pregnancy outside of the normal pregnancy things. I know I mentioned this in another post but I was so happy to be a ‘normal‘ person again. It makes a person want to be pregnant for the rest of their life to feel that great. Anyone woman who has been pregnant knows that being pregnant for the rest of your life would suck but it was an improvement for me. 🙂
My neurologist obviously had dealt with pregnant women before and said I could get about an 8 week window of symptom free life after the delivery. OK, that sucks but he was willing to play it by ear with MRIs instead of just putting me back on Tysabri because I really really wanted to breastfeed. I really appreciated it even though in the back of my head I knew that was best case scenario.
I wish they could just bottle up the hormone present during pregnancy and call that the cure because it is a beautiful thing.
The delivery was relatively easy: 6 hours of labor and 2.5 hours of pushing. It was quick! Besides my vagina hurting I thought things would be fine. Michael went back to work a couple days after we got home. Fast forward 2 weeks and I started to wonder what I was feeling. Are these pregnancy related sensations or MS sensations? One of the symptoms I really wondered about was the fact that my stomach had the dull, numb feeling. It is really hard to describe but try to imagine wearing a body glove and someone touching you. I had only had my whole body go numb once when I was 16, when all of my symptoms started.
Next my feet started to go numb and have the feeling of being cold all of the time. “Oh crap. No way this is happening so soon.” I tried socks and blankets with no luck. Next to go was my balance and the ability to walk well. This was about 4 weeks postpartum and I knew I needed to go in for a checkup because I was responsible for walking up and down the stairs with Baby Michael.
Let me just say that pumping sucks in the first place but when you are pumping and dumping it out that BLOWS. MRIs were ordered and steroids were administered. I did 3 days of IV Solumedrol and a 12 day pill taper with a 24 hour period after my last dose of dumping. This trashed, ruined, nearly depleted my milk supply. I was crushed because I was only producing 4 ounces of milk a day! I started on Copaxone because it was considered ‘safe’ for pregnant and/or nursing Moms. Sure it is safe but it is a crappy drug.
To bring my milk supply back up I literally ate lactation cookies for 2 weeks straight, took 10 Fenugreek pills a day and kept Michael on my breasts all day long for stimulation. I was able to get up to 15 ounces with one bottle to supplement a day. I know breastfeeding is best for babies and I understand why the media talks about the importance of it because if they didn’t stress it then no one would do it. On the flip side, it makes people who want to breastfeed feel incredibly guilty because they can’t. I cringe when I hear women say that they don’t think they are going to breastfeed or they don’t really want to… because I am jealous.
One of my last appointments I had with my neurologist he extended my pregnancy plan from 6 months on Tysabri to <<3 YEARS>>!!! He said I should wait until Michael is potty trained and able to take care of himself more. OMG devastated once again. His next comment really made sense to me though, “You don’t want to be a Mom in a wheelchair do you?“. *Sigh* no I don’t because that would suck.
I will say that even with my leg pain I am pretty happy to be walking again. I have limitations but my legs aren’t dragging, people trust me to carry my baby again and I don’t look handicap anymore.