Wednesday, June 29, 2011

Doctors and Dogs

I had my quarterly check up with my PCP today, and it was a very interesting visit. He is going to run all of the MG tests again, plus do the MUSK test this time. MUSK is another test for MG; I've never had it done before as it is very expensive. But, sometimes people can be MUSK positive and be negative on all of the other tests. Regardless, he said he is 100% sure I have MG based on my symptoms and my response to the Mestinon. He wants me to double my morning dose since I seem to have the most problems in the early afternoon. He also brought up IVIG and Plasmapheresis. Both are medications used to treat MG and both have to be administered by IV (usually in the hospital). I don't think I'm quite ready for those yet, but he wanted me to know that he would order them for me in the future if need be. I told him about the upcoming trip to see the Geneticist, and he was very interested in what the outcome would be. He could tell that my shoulders are pretty much sublexed all of the time. He brought up the fact that all of our local neurologists were so closed minded. He said a doctor shouldn't go into neurology unless they want to be a detective. That being willing to figure out the tough cases is what makes a good neurologist. I'm hoping the Geneticists will be able to refer me to someone that he has a professional relationship with if he feels it's needed.

In case you haven't  heard it by now, we are getting a PUPPY!!! We are all super excited!! Well, Tim might not be just yet, but in time, he will be. She's a Cockapoo Wheaten Terrier mix, and she's an absolute doll. I'll post a picture of her shortly. We are picking her up on Saturday, in the meantime, I've been busy making phone calls regarding obedience classes, dog gates, immunizations, etc. Tomorrow we are going shopping for her. I'm excited about having a female dog. Of course, we loved our Elmo, but we will love Pumpkin too. I've decided that if her temperament is pleasant, I want to train her to be a Therapy dog. Then, I could take her into hospitals and nursing homes to help cheer the patients up. I would love, love to be able to do something like that. I hope my health allows it.

I wanted to talk a little bit about my last post. I guess it was too personal...I think being sick has made me feel so isolated and lonely at times. Losing a friend has just added to those feelings. I'm working through them, though. I thnk it's hard when you are sick to keep up your current friendships; sometimes it's because you are too ill to do things, or, sadly, sometimes the other person can't handle your illness. It's also harder to make new friends.Let's face it, depending upon how much your illness affects you your outings may be very limited. Maybe you can meet someone in your doctor's office waiting room, or perhaps at the pharmacy when you are picking up your truckload of medications. Church has even become a problem for me. I'm just not that comfortable going anymore. So many people do not realize the illnesses that I have. The few times I've had to use my cane at church, I had several people stop and ask me what I did to myself. It's too much trouble to explain everything I'm dealing with right now. Then, there are the people who try to hit you up to volunteer for things. Now is the time when I should be volunteering; my kids are nearly grown, I'm working part-time, but feel as if I wouldn't be very reliable as I'm at the mercy of my illnesses. I know if I was more active in my church I could get to know some of the church women more and probably some friendships would come from that. I'm not complaining, though. Not really. I mean I do have several good friends here in town. And, I have a few that I've met online that I consider friends too. Even though our illnesses and distance have kept us from meeting, I feel as if these women are my friends just as much, if not more than the ones who live nearby. Most are dealing with illness too, so we understand each other. That means so much!

Well, I need to take my Mestinon and rest up a bit before we go shopping for Pumpkin. It's getting closer! As I said before, I'll be sure to post some pics here, and if you're my friend on Facebook, she'll have her own album and Facebook page.

Enjoy your day!

"True friendship is like sound health; the value of it is seldom known until it be lost." ~Charles Caleb Colton  I thought this quote was fitting given the content of my post about illness and friendship. 

1 comment:

  1. I'm glad your PCP is looking into the MuSk test. There are some people that can be AchR negative and MuSk positive. Most MuSk positive people have severe Bulbar symptoms.

    When you mention doubling the Mestinon is that based on a 45mg or 60mg dose? I hope you find a neurologist closer to home soon. MG is hard enough to manage.

    Pumpkin is so cute! I'm glad you decided to get another dog, she will be great company for you!

    Some folks just can handle people with illness's,let alone "invisible or chronic illness" people don't know how to act, are afraid they might say or do something to offend, there is also the fear that they too might become ill. All we can do is educate people to the best of our ability and nurture the friendships that remain intact.

    Please don't feel alone in all of this, we all go through it. Some days it's so much harder than others. Stay strong, keep the faith!