I Finished Breastfeeding and Started a Disease Modifying Therapy

*I wrote this a couple of weeks ago and intended on posting this last week. However, last week ended up being quite a whirlwind and I have already stopped my treatment! I will be posting another new blog to explain more later this week.

Ending Breastfeeding

I am officially done breastfeeding Audrey. I definitely had mixed emotions, but she was ready to be done and it was time for me to start back up on my disease-modifying therapy. This past year has been such a gift to me. Not only did I get to feed Audrey the entire year, which wasn’t guaranteed, but I was able to stay off my medication for an extra year and my brain scans were stable. The Lord offered me a blessing to be able to be at peace and offered me mercy in supporting my desire to breastfeed Audrey for her first year. 

The Lord bless you and keep you; the Lord make his face shine on you and be gracious to you; the Lord turn his face toward you and give you peace.

Numbers 6:22-27

Not only did I have the opportunity to feed Audrey through her first year, but I was once again able to donate milk to other babies this past year. It was special because this time around I was able to donate a lot of my milk to a family member. I was also able to donate to another friend who has MS and recently had a baby. I also donated to Northwest Mothers Milk Bank that provides milk for NICU babies across the northwest. All in all, I donated roughly 4,500 ounces of milk. For anyone who has breastfed, they will know this is a lot of milk. For those who don’t know, that is a lot of milk. Roughly the amount it would take to feed another baby alongside Audrey for an entire year (this would maybe be on the low end depending on how much your baby drinks vs eats solid foods).

Breastfeeding is incredibly complicated and not well discussed in our society. It seems as if most moms plan on breastfeeding, but there is not a lot of information available during pregnancy to help support moms in their breastfeeding goals. As well as, not enough information to explain that it isn’t as easy as we imagine or hope. In my personal opinion, if you say you want to breastfeed, (no big deal if you don’t – fed is best), then you should plan to set up at least 2 appointments with a lactation consultant in the last 3 months of your pregnancy. Even though the baby is not yet here, there are things that can be discussed to help support that mom once the baby is here. Once you have the baby in the hospital, you are lucky if a lactation consultant comes around to help you figure out how to get the baby to latch. And, if they do come by, it is usually for about 5-10 minutes. About 3 days postpartum, for both of my kids, I went to a mommy and me check-up where you do get a bit more time with a lactation consultant. Then, you are all on your own. Some hospitals have lactation consultants you can call or set up an appointment with, I also did this once or twice with both of my kids, but these are not always convenient or easy for moms to access. There is not a lot of information to help moms who struggle with latch or supply concerns. It is also much harder for women who work to continue breastfeeding while they are working. They need to find time in their days to take breaks from work, find spaces to pump, and it quickly becomes inconvenient and too hard to maintain. These are only a handful of challenges. That being said, it has been so heartwarming to me that my oversupply has been able to benefit some other babies. 

Disease Modifying Therapy

Well, unfortunately after a year and a half off of my disease modifying therapy, I have started back up again on Copaxone. It was quite the hassle getting this medication delivered. The fun part about needing a “fancy” medication is that you get to deal with a whole new set of insurance and  co-pay assistance programs. It was such a headache and stole hours and hours of my time away. I am pretty irritated with my specialty pharmacy and feel as if they are pretty incompetent as I felt like had to do their job for them. That is always fun. I would spend hours on the phone with them thinking my medication was set and scheduled to be delivered and paid for by insurance and something would go wrong. Every time I would pick up the phone the person on the other end called my medication by a different name (there are generic names, but there should have only been one listed in my profile). At one point I was told that I somehow on their end had two accounts with my meds on one account and my insurance info on the other. I had no knowledge of these two accounts and couldn’t fix it on my end. Not once, but twice our credit card was charged almost $4,000. My very last phone call was filled with anger, tears, and frustration. I think I spoke with 5 people in total that last call and I made sure to tell them all that I wasn’t pleased with their company and that this has been the most infuriating process. But, my medication is here and I won’t have to deal with them until it is time to reorder in a couple of months.

Starting Copaxone a Disease-Modifying Therapy

I started on Copaxone on March 15 and will have to administer one shot Monday, Wednesday, and Friday until I decide to switch therapies. So, it could be anywhere from 1 year to 20 or 30+ years (Ha – turns out I only lasted a week and a half). Reasons for switching would be if the disease progresses while on the medication or if I just can’t tolerate the side effects. But, unfortunately, all of these disease-modifying therapies have side effects, so like I was telling someone the other day it is sort of a “pick your poison” type of situation. I was incredibly nervous before my first shot this time around. I really worked it up in my head to be this awful experience and really painful. Thankfully, the actual shots themselves aren’t too bad. I can hardly feel the needle prick, but it is the moments after the shot that can be bad. Sometimes it can sting, and usually hours later it starts to itch and swell. The itching and lumps are at their worst about 24 hours after administration. On Tuesday I forgot about my shot and the side effects and I was scratching one area like crazy. I thought, “wow, I think I got a really bad bug bite” until I realized that it was my medication. So far with the first three, the swelling hasn’t been bigger than the size of a tennis ball. But, if I remember correctly they got a bit worse over time. I believe that after 3 months it is supposed to get a bit better. Time will tell. Maybe I will just start getting used to it and be able to ignore it.

I was truly hoping that in a couple of months I would be able to create a more informative post to help others who are new to their MS diagnosis and starting Copaxone. I may still try to find a way to do this because I learned several tips and tricks. 

My MS

Thankfully, to my knowledge, I have not had another relapse. Which, some days I think is amazing since it has been an incredibly stressful and hard year with the loss of my sister and Lindsay. I am very hopeful that my medication will also help keep my brain stable and that I won’t see a relapse for a long time. 

I have told you these things, so that in me you may have peace. In this world, you will have trouble. But take heart! I have overcome the world.

John 16:33