Sabotage

This cracks me up- two of my cousins, Mary Clare and Margo both separately wrote to me on the same day concerned that I would do too much. The thing is, it is just about impossible not to do too much. Pretty much everyone I know who has kids does too much. That being said, I have to put it out there that I am doing my very best here, folks. I have cut our activities by like 95%- and we are being hyper-vigilant about germs and people. I am in bed most nights by 8:30-9 o'clock and I have been doing my best to lay down every day for at least an hour. I don't always write about the reality of what is going on here. I usually write about the triumphs because I really despise the thought of focusing on the negatives.

In fact, I haven't written much lately because I have been feeling like someone who is on chemotherapy. LOL I save my good moments to be with the kids and Jason (and sometimes grab a nice long shower for myself) rather than take time to write and sound like I am complaining. Because I am not complaining... This is working and it is a long road to travel, but I am going to get there. I am once again speechless at all the kindness people have shown us. One of my neighbors, Ellen, has been an absolute gift from God in the past weeks, taking the kids all the time so I can lay down or go to doctor's appointments.

My symptoms have changed, and I am taking this as a good sign. Everyday is a different ballgame. In the past, the symptoms would start out and increase over several days until I got myself into trouble or got some IVIg or plasma exchange. Recently, they come on strong and fast. The other day I was out walking with the kids, and I felt really good. In the blink of an eye I couldn't walk anymore. LOL I had to drag myself and the stroller and Katherine's bike home. I am sure the kids and I were quite a sight. Next time I am going to stop at a neighbors and ask for a ride home! When it happens, though, it is hard to think like that.

Yesterday I had a similar issue right in the middle of my IVIg treatment. I was just sitting there and I noticed that my lungs felt like I was breathing in the coldest air on the planet. My speech became slurred and thick and I could barely swallow. Ahhh details, details. Sorry. Anyway, my fantastic nurse, Cindy (she is also one of our neighbors) suggested Mestinon- and within 20 minutes the symptoms had resolved. Here I was thinking I was having a reaction to the IVIg and it turns out it was just the ol' Myasthenia rearing its angry head. So I have to go back to walking around with mestinon in my pocket, even in the house.

Again, I am taking this as a good sign. As far as I am concerned, the fact that the pathology is changing means we are stirring something up in there. So we keep going, and keep smiling. And if you see a masked woman in the grocery store, don't run the other way- it might just be immuno-compromised me!