Back to the Grind

It has come to my attention that I have been neglecting to fill people in on my health, which was the whole purpose of this blog way back when. As I have said before, I just don't really feel like talking about it lately. Since you all have been so wonderful about sending me your thoughts and prayers, I need to let you know what is going on.

The chemo has significantly improved my health and our lives. Unfortunately, it wasn't the cure I was hoping for, as I am still going in for IVIg twice a month. The thing is, I am so much better that I am not complaining. For example, Monday morning, I took a bike ride with Thomas on the back of the bike- 5 miles! By that night I knew I needed to get in for treatment. So all week last week I was swimming almost a half a mile every day, and I was good- feeling good, able to be Mommy, cook dinner, do the laundry, be a good wife and keep my general level of insanity low :) Ohhh don't I sound so domesticated? That is pretty funny. Not at all how I would describe myself. Oh well I am pretty sure my life is way more than the textbook description of full time mom (definately a topic for later discussion- like anyone should have a textbook description of what it is to be everything to people other than yourself).

So I have a choice. Do I continue to live my life the way I want to- playing with the kids instead of napping, working out, going to the occasional party on a Friday night or a neighborhood happy hour on a Wednesday afternoon- or do I become overly cautious and constantly worried that the symptoms will come back and I will have to go back for more IVIg? Pretty clear choice to me. I am tired of being a sick person. Now since the chemo I don't have to be anymore. People are very fond of telling me not to overdo it. God Bless my parents and Jason.... they get it. They just say how proud they are of how I am doing and how exciting it is that I am swimming again. I am sure they are worried- they love me after all!!! They are just putting the positive out there for me. Everyone has been so supportive and I am so grateful. Please continue to think good thoughts for me and for my family. This disease isn't gone- but I am thrilled to have it not be the center of my life anymore.

The current plan: IVIg once every 2 weeks (30 grams- which is half of what I had been getting) and chemo every third month for one year. Chemo will likely continue for a year past that at every fourth month. All subject to change, of course. Life wouldn't be fun if we didn't have surprises. Just kidding.

So if you call and I am slurring, please don't be upset. Remember that I am living my life the way I want to now. I am no longer ruled by myasthenia gravis. Six months ago I had to park in the handicapped spots on the days I felt up to going to the store and then I had to go home and take a rest because I was so wiped out. I had to plan when I was going to take a shower to make sure I had enough strength to dry myself off and still be able to make a peanut butter and jelly for the kids. Now my biggest concern is if I swim too hard, will I be slurring later. God has given me a gift- a new lease on life, and the perspective to truly enjoy all that I have and all that I am able to do.

Busy times

First Day of School 2008

Waiting for the bus with Mommy

Thomas waiting for big sister to come home :-)

First Day of Preschool for Thomas!!!

We LOVE Acorn School!!!

I can't believe how long I let this blog go without writing. No wonder I keep getting phone calls asking if I am okay. Yes. I am okay. Thank you all again for your thoughts and prayers, and to those of you who have called. I guess I just got tired of writing. Got tired of thinking about the disease, the treatments- if they are working or not. I took the summer to spend with my wonderful kids and husband. Spent precious times in Wolfeboro with my parents, and down on the cape with Jason's parents. We had lots of fun activities going on when I was up to it- which was a lot. Certainly more capable than I have been at anytime in the last 4 years (actually the last 14 years). It is hard to believe that the best I have been is while I am in the middle of chemotherapy. That thought keeps it all in perspective for me.







We have really just been enjoying it all. Jason and I don't really talk about the MG much. Not that we ever did. As I have said before, regardless of how things are with my health, we pretty much always have just said, "fine, we are fine. Thank you". In reality, we are fine. We have a great marriage, great kids, great family supporting us and excellent attitudes- if I do say so myself. So the myasthenia is still here with us, but it doesn't rule our lives, and I have spent many long hours making sure it doesn't define who I am. There have been many times when I have felt like that is all I am- a sick person- but I am not that, in fact that is probably the smallest part of who I am. Those have been the hardest times for me. Most of the time I am uber positive. When I am not, I get so mad at myself. But hey, I am human after all. There are just so many good things to think about, why would I dwell on the bad stuff?







So to fill everyone in on my health, I did need to go in unexpectedly last week for an unplanned IVIg- but I am not concerned. The previous IVIg was only 30 grams (I had been getting 60g every other week). We were hoping to make it 30 grams once a month, and I made it to 2 and a half weeks. Plus it was a stressful week (happy but stressful) putting our little girl on the bus for the first time and sending little Thomas off to preschool for the first time. So far, this week has been much better. The kids love school, and I have even been able to get back in the gym! I just got home from swimming a half mile- my goal is to make a mile in one hour by next week. Today was half a mile in 25 minutes. I think I can do it!!! No- I know I can do it.





Thank you all, as always for all your support. Your prayers are the biggest reason I am doing as well as I have been. I will be eternally grateful for all the kind thoughts.