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?

Thursday, September 25, 2008

Overwhelmed

Overwhelmed. The word I use to describe how I am feeling. I'm not sure why I feel so overwhelmed because I am not working this year. I took a one year leave from teaching 2nd grade to be at home with my baby (So, I am working a 24/7 job with no sick time.). I am so glad I decided to do this. I wouldn't want anyone else to be taking care of my baby now. He is 5 months old right now and I couldn't ask for a better baby. I haven't told my husband that I feel overwhelmed because I can't even imagine what word he would use to describe how he is feeling right now. He is very busy at work, taking two college courses which are very demanding with reading and writing, dealing with landlord issues (finding new tenants and getting one to pay on time), getting the house ready for winter, trying to pay bills on time and in his free time spending time with his wife and baby. I really feel like I can't complain but it's how I feel. I LOVE being a mommy but it truly is the hardest thing in the world. No one can really tell you how hard being a mommy is. If they do you truly won't know until you are in it. I have no idea how I am suppose to get back into my career come next September. Who will keep the house clean, do laundry, and make an occasional dinner(I have wonderful husband who when he has time makes great dinners)? I am a clean freak so in order for me to not be grumpy my house must be clean. I know I don't have to worry about that yet but I do think of it often. I think I'm still dealing with my MS diagnosis a lot too. I don't think I'll ever be able to accept the fact that I have this. I've only been on Rebif for 3 months now and it sucks. There are many days after doing my shot that I feel really awful. I am glad I don't have to go to teach everyday because every Tuesday and Thursday I think I would be calling in for a substitute. Today I actually wished I could have called a substitute mommy. I do the best I can on these days to be the best mommy I can be. I am hoping come next Sept. I will be adjusted to this harsh medicine.

I hope to write my next blog about my feelings towards Rebif.

Sunday, September 21, 2008

GRRR!

I'm not sure why I am feeling the way I do. I've been having these feelings for maybe a month now. I just sometimes feel so grumpy and if something isn't done by me then it isn't being done right. I also turn bossy telling my husband how to do things that I know he can do just fine. I really don't like this grumpy and almost angry feeling because I feel as though I can't control it. I get frustrated because the way I am acting isn't me. I don't act this way. It almost feels like an outer body experience that I don't have any control over. Why am I so grumpy? What am I so frustrated about?

Thursday, September 18, 2008

Why I write

First, let me say do not judge me on my writing. I have never been a strong writer and I struggle with words. I'm not here to be creative or to have people enjoy reading what I write. I don't care if people even read my blog. I am here for me. I started this blog so I could have a place to write about my feelings and MS. I have such a wonderful support group but no one truly understands how I feel and what I am going through. I have a very dear friend who was diagnosed with MS at about the same time I was. It sucks to have this happen to a close friend but at the same time it is a blessing to have each other. We talk a lot but I sometimes feel that MS is all we talk about. I read someones blog the other day and it was quoting the quote "I might have MS but MS doesn't have me." I feel the same way they do. It does have me and there isn't a day that goes by that I don't think about it. Now that I have started Rebif I feel like MS is in control of my life. I have my good days where I think positively and then I have my bad days. I know this is true with everyone even if they don't have MS. I am now going through the period of asking why. I just get frustrated to have to give myself shots and have to have my husband help too. I just hate the thought of having to do this for the rest of my life. It pretty much stinks and no one understands unless they are doing it too. They can try to understand but they just won't get it.

Tuesday, September 16, 2008

Diagnosis

Here's the short version: I was diagnosed with Multiple Sclerosis in October 2006. The symptom I was having was double vision. I am a teacher so this made it extremely hard to read to my students and basically do anything. It also was affecting my driving. I wasn't sure what was going on so I started with a visit to the eye doctor. I saw her a few times and she did a number of different testes and finally suggested an MRI. When looking at the MRI results she was thinking it looked like MS so she recommended me to a neurologist. The neurologist said it was MS. My husband and I wanted a second opinion so we went to the MS Clinic in Rochester, NY. They too confirmed that it was MS.

I didn't start a treatment right away because my husband and I were in the process of trying to have a baby. We spent a year and a half trying to get pregnant. During this time I had no new symptoms of MS. When I finally got pregnant I did great too. After having my baby I started using Rebif. I have been using Rebif for 3 months now.