Thursday, February 3, 2011

Highs and Lows

Today has been a very, very long day. I don't want to come off as complaining, so I'll just say I'm venting. There. Doesn't that sound better? This morning, Tim and I ran several errands. I really felt pretty decent. I'd say we were gone about an hour or so. Then, I had about an hour here at home before I had to leave again. I went to pick up my sister, who had to drop off her car at the repair shop. Then, we went to the nursing home for a care conference regarding our mother. When my sister asked me if I could pick her up and drop her off, she asked if I'd be staying at the nursing home for about an hour. I said yes. Somehow her definition of an hour and mine were very different. We had the care conference from 11:30 until about noon. Then, we went to visit with mom and our aunt. Well, then that's when she mentions that she had told them she would be back to get her car at 2:00 pm!! Finally, at about 1:30 I say we really need to be going. By the time I got her over to get her car and got back home again, it was 2:30 pm!!

So, all in all, I was probably gone for five hours today. To most people that wouldn't be a big deal. But, for me it really is. Although I have to say that I in no way feel nearly as bad as I would have in my pre-Mestinon days. On the way home, I realized that Elizabeth's dance class is tonight, not tomorrow night as I was thinking. She does drive now, but I've been taking her because her class is after dark and it's in a not-so-good area of town. The girl down the street takes there too, and we've been taking turns giving rides home. Tonight is my turn to drive home. So, I'm thinking how I wish that she wouldn't want to go, how I really just want to stay home and that maybe her cold would be too bad for her to go. What kind of mother thinks those things??? I felt so, so bad when she came home crying with a bad headache, chills, and body aches. No, she isn't going to dance tonight. And, yes, I feel bad about "wishing her sick." Not that I really intended to do that. Where's that sarcasm font when you need it??

If I would have thought ahead, I may not have gone to the nursing home today. Thinking that going there, then having to drive tonight would have been too much for me. But, I wasn't thinking clearly, probably another "side effect" of being sick. I'm blogging about this because this is just one example of how a chronically ill person has to make choices about nearly everything they do, every day. I don't think most people really get that.

OK, so that's the low part of my blog. Yesterday, I think I said I'd share about my doctor's visit that I had on Wednesday. So, that's what I'll do now. That's the high!! I love, love my doctor. He answered all of my questions and then asked if I had any more questions. We discussed how much the Mestinon has helped me. He said when I came in last time and told him all of my symptoms that they were textbook Myasthenia Gravis. He said it can take a long time for antibodies to show up in the blood, and sometimes they never do. In that case, the best thing to do is to treat the disease. He told me I really need to up my dosage of Mestinon (I'm still not taking the full dose, but I'm close). He planned on giving me a prescription for Prednisone to have on hand in case I have a bad flair up. I think he forgot about it, though. He's going to see me every three months. He said he would be more than happy to discuss my care with my neurologist in Indianapolis. I finally feel like I'm in good hands with this doctor. Oh, I did bring up the fact that I'm noticing a lot more abdominal weakness. I asked him if that could be part of the MG and he said that it was. Without going into too much detail, he gave me some ideas on how to deal with the muscle weakness as it pertains to my bathroom habits. See, I prettied it all up, didn't I?

Well, I'm off to forage for food.



PS...Here's a chronic illness spell check funny, the correction for prednisone is prisoner, too funny.


  1. Planing your day is so important, but sometimes even the best laid plans don't go as we would like. We all have days like that, a good nap is usually in order when you get home. I think all moms have had similar thoughts, heck, I'm not a mom and I have had times when one of my nieces didn't feel well and I hoped (just for s split second) that they weren't feeling up to going to school, just so I could get some extra time in bed after a long night with a sick child.

    The doctors visit sounds like it went well. Now you need to work on getting your Mestinon dose on target, it's not a cure all, but it will make life easier. Drink lots of fluids, try to rest whenever possible, you need to take care of yourself, so you can take care of your family.

    Take care,

  2. I think you're right about plans not going as we would like. Part of the problem with me is that I have a hard time telling my sister no. She depends on me a lot and I don't want to let her down. Still, I think she understands and she wouldn't be upset with me if I said no.

    I'm not sure if you are like this with your MG or not, but I can be fine and then the exhaustion just hits me like a Mack truck. It can be so unexpected. At times, I can feel it coming on, but sometimes I can't.

    I need to figure out the timing of my Mestinon that's for sure. I am starting to get my apetite back a little, so I think that should solve some of my problems.

    Thanks for your help! I do hope you're doing are spending an awful lot of time helping me; don't forget that I'm here if you need anything.