Saturday, September 27, 2008

Rebif

First, I want to say thank-you for all your wonderful comments and warm welcome to blogging.

I started my Rebif injections on June 19th. This was one of the hardest days in my life. Not only did I have to start giving myself injections 3 times a week but it was also the last day of breast feeding my baby. I talked to my neurologist about how important breast feeding was to me and I wondered if I would be able to do it and if I could for how long. My midwife said if he allows 2 weeks it is better than nothing. I was blessed to be able to breast feed for the first 2 months of Asa's life. I also pumped (I felt like a cow.) a whole extra months supply of milk. So, he actually got 3 months of mommies milk. I was very proud of all the milk I pumped. If you are a mother and you breast fed your baby you can understand how hard it was for me to have to stop after only 2 months. It is such an amazing bonding experience. In preparation to stop breast feeding I had to see how he did with the bottle. He did such a great job and had absolutely no trouble at all. Myself on the other hand was sobbing so hard I had to have my husband finish the feeding because I just couldn't do it. Then, when I saw my husband feeding him I realized it was officially over. I just went in the bathroom and cried. It still makes me sad. The one thing that frustrates me is when people ask me if I'm breast feeding because they have no idea what is going on in my life. Seriously, why do they care and it's just a personal thing. I knew I needed to start my MS treatment because in order for me to take care of my baby I needed to take care of myself. I just hope I will always be able to take care of my baby.

When I was having the double vision I had to go through a steroid treatment. Two of my very close friends insisted on going to this with me. I warned them that I hated needles and was afraid of them. Well, my one friend told me that I'm not afraid of needles I am terrified. She said she had never seen anything like it. It really is awful when I need to get a shot or get blood drawn (which I need to do now every 3 months). I just get so anxious and it's a fight to basically hold my arm down. By the 3rd day of steroids I was getting better with the IV. After having a baby I think I can say I'm a little better with needles. When I heard I had to give myself injections I just didn't know how I was going to survive this. I felt awful for the poor nurse who came to our house to teach my how to use the injector. She probably had to sit and wait a good 45 minutes until I actually did the shot. I started the shot on a Friday so the next one wasn't until Monday. My husband has been so wonderful through this whole thing. He sat with me and was basically coaching me through it. After about 3 months of doing my injections I have gotten much better. It's only about a ten minute ordeal compared to a 45 minute ordeal. For about the first 2 months I would cry. I also went through an angry stage (which still happens). I would swear and say I just don't understand why anyone has to do this to themselves. I've gotten much better but I still get angry and hate that I have to do this to myself. It really is a crazy thing to have to give yourself shots. I do my shots on Monday, Wednesday and Friday's. I've started to hate these days of the week. I feel like all day I am anticipating giving myself the shot at night. I have a great bunch of friends that I teach with and we've started doing a Girl's Night once a month. Well, I try to get us to do them on Saturday nights because the last time it was a Friday night I just couldn't have fun and I was just so anxious about getting home and doing my shot. I also prefer not to drink alcohol on shot nights. I know I really shouldn't be drinking at all but I really need the occasional glass of wine. In one of my blogs I wrote about the angry feelings I've been having and Lisa posted a comment that made me think. She wrote: "While you were trying to get pregnant and MS was not affecting you much, it probably was almost like MS was not a part of your life. But now it's a much more frequent issue." How true that is. There were so many times when I could forget that I had MS but since I've started Rebif it's a HUGE part of my life. Since the double vision I've have been blessed to have not had any other symptoms (although I'm starting to have some blurred vision on occasion). There isn't an hour in my day that goes by when I'm not thinking about my MS. Will I ever accept MS as part of my life?

2 comments:

Weeble Girl said...

Hi Heather and thanks for stopping by and reading my ramblings! I also appreciate your comments and questions. I live about an hour away from Syracuse and I do not attend any support group meetings. They're often at night and I just can't get there and home with working.

I do spend some time at MSWorld.org and at the Neurotalk communities, but not so much now that work is here.

Rebif was my second MS med and I hated it every moment. I always felt crappy and the depression was even worse on the med than it is now that I am on nothing and waiting to start Tysabri.

I added your blog to my list of blogs I read so I hope that's okay. Your son is so cute and lucky to have such a good mom.

I look forward to reading more and getting to "know" you.

Hugs,
Weebs

LISA EMRICH said...

Heather, I'm so glad to see you getting around and meeting some of the other MS bloggers. It really is a nice community of folks.

In addition to the blogosphere, there are several forums/message boards, although I gotta warn you, they can take up ALOT of time if you let them.

Also, I don't remember if I mentioned it, but there's a growing community at MultipleSclerosisCentral where I write and participate. Here's my profile there.

Yes, MS will eventually become a part of your life, and you may very well have hours, days, weeks, where you don't think about it much. It does get better. :)