I think I have kicked the infection out once and for all. Two antibiotics, steroids, fluids, treatments. It worked once again, even through some scary nights of coughing. I pushed fluids to thin secretions and now I have too much fluid on board. Ugh. That's what I am working on now and for the next few days at least. Breathing and sleeping easier are at stake.
Next week one of my old favorite respiratory therapists will be coming to help devise a plan to keep me from getting a trache just yet. I hope to set up a vent I can sip and puff off of during the day via mouthpiece. I could use that by day and my current system by night. I've had this nighttime facemask on with the vent for so long, it is driving me crazy.
The silver lining is that I'll have a lot of time to watch the Olympics!
Fortunately I have been able to keep my strength and not lose anymore weight. I need to focus on my respiratory issues for now while I continue to educate myself about feedings.
Friday, July 27, 2012
Tuesday, July 24, 2012
Why Can't Things Stay the Same?
M asked me that the question yesterday when I explained how my breathing is changing, and there may be some changes in machines I need, or tubes I'll have to use. I had no answer for her. Before I could explain that changes can be good, she had bounded off the bed and out of the room after wiping a few quiet tears from her eyes. She tries so hard to be strong for me- it kills me.
I started this blog for no real reason last year but think this is a good time to resurrect it for now. John is too busy and tired to answer many questions, and they don't always make sense when he tries to, shhh. He is on top of things, but exhausted.
I will use this to update for family and friends about what decisions I'm facing and how we are dealing with it.
Changes have occurred. I actually got a diagnosis- Limb Girdle Muscular Dystrophy Type2i, LGMD2i for short. It's really only half of the diagnosis since this disease requires a copy from each parent and I only have one. The super-smart scientists at Nationwide Children's (I think?) are still busy sequencing the rest of my DNA. My doctor assures me they will finish the project.
A big change has been my weight. Eating has become difficult and tiring. I am aspirating too much and not getting enough nutrition. Recently, I have put a few pounds back on with smoothies, shakes, ensure, and protein powder. A feeding tube is in the near future though. I hope I will be able to enjoy being around family meals again. They have become too stressful.
Perhaps the scariest change is regarding my breathing, I have been pretty stable for many years. When my diaphragm quit moving, I used the Bi-Pap for years until I maxed its settings out. I moved to using the Volume Ventilator, which I still use non-invasively at night. When I couldn't cough anymore, I started using a Cough-Assist Machine. The Cough-Assist has saved me from pneumonia, hospitalizations, respiratory arrests many times, in my opinion. Unfortunately, I had a recent bout of bronchitis that has flattened me. I have not been off the vent for more than a half hour a day, at most, since July 7. More decisions to make.
I've had a couple appointments, and I have a few coming up. I'll update those another time.
I am feeling better, just exhausted and sore. And really mad that I have had to cancel some family fun trips. We are not extravagant people, but I had some plans. I am so disappointed I have to miss a family event, and not take my deserving girl on a couple weekend trips. So, I will wait until we can go.
This crazy life- still hanging on.
I started this blog for no real reason last year but think this is a good time to resurrect it for now. John is too busy and tired to answer many questions, and they don't always make sense when he tries to, shhh. He is on top of things, but exhausted.
I will use this to update for family and friends about what decisions I'm facing and how we are dealing with it.
Changes have occurred. I actually got a diagnosis- Limb Girdle Muscular Dystrophy Type2i, LGMD2i for short. It's really only half of the diagnosis since this disease requires a copy from each parent and I only have one. The super-smart scientists at Nationwide Children's (I think?) are still busy sequencing the rest of my DNA. My doctor assures me they will finish the project.
A big change has been my weight. Eating has become difficult and tiring. I am aspirating too much and not getting enough nutrition. Recently, I have put a few pounds back on with smoothies, shakes, ensure, and protein powder. A feeding tube is in the near future though. I hope I will be able to enjoy being around family meals again. They have become too stressful.
Perhaps the scariest change is regarding my breathing, I have been pretty stable for many years. When my diaphragm quit moving, I used the Bi-Pap for years until I maxed its settings out. I moved to using the Volume Ventilator, which I still use non-invasively at night. When I couldn't cough anymore, I started using a Cough-Assist Machine. The Cough-Assist has saved me from pneumonia, hospitalizations, respiratory arrests many times, in my opinion. Unfortunately, I had a recent bout of bronchitis that has flattened me. I have not been off the vent for more than a half hour a day, at most, since July 7. More decisions to make.
I've had a couple appointments, and I have a few coming up. I'll update those another time.
I am feeling better, just exhausted and sore. And really mad that I have had to cancel some family fun trips. We are not extravagant people, but I had some plans. I am so disappointed I have to miss a family event, and not take my deserving girl on a couple weekend trips. So, I will wait until we can go.
This crazy life- still hanging on.
Thursday, May 19, 2011
My Girl
My girl, M, is eight years old. She'll be nine at the end of the summer. I wouldn't mind if she stayed eight for another year or two- childhood seems so short now. M has had many interests over the years, most notably is her love of dinosaurs. One of my most favorite pictures is of her asleep in her bed with her dinosaur encyclopedia opened and propped up next to her. She was three years old. She insisted on being read that encyclopedia every night for a.long.time. I'm talking years here. It bored me to death. But I read it. Sometimes I read it in a rhythmic, monotone voice in hopes of lulling her to sleep a little quicker, but I read it. She will always have an interest in prehistoric life, I imagine.
M is independent and stoic. She needs and likes to have alone time. This is hard for me sometimes, because I miss her during the day when she's at school, and I want to chat and hug on her when she comes home. Often that is the opposite of what she wants! We work it out, but it isn't always pretty. She's definitely an introvert though, just like her mommy and daddy. Her sense of humor has really developed the past few years. She is a funny kid and likes to make people laugh.
She's a scientist too. We find concoctions she has made around the house all the time. If it's a powder, a liquid or if it's tiny, then it has been mixed into some sort of potion by M. She made liquid chalk paint a few weeks ago and painted on the sidewalk with it. I think she would be thrilled if she got a mortar and pestle set for her birthday so she could grind up anything to mix. While we applaud her ingenuity, it does get messy and it has led to a few not-so-stellar parenting moments.
I hope she knows I think she is the most amazing, wonderful, and special girl in the world.
M is independent and stoic. She needs and likes to have alone time. This is hard for me sometimes, because I miss her during the day when she's at school, and I want to chat and hug on her when she comes home. Often that is the opposite of what she wants! We work it out, but it isn't always pretty. She's definitely an introvert though, just like her mommy and daddy. Her sense of humor has really developed the past few years. She is a funny kid and likes to make people laugh.
She's a scientist too. We find concoctions she has made around the house all the time. If it's a powder, a liquid or if it's tiny, then it has been mixed into some sort of potion by M. She made liquid chalk paint a few weeks ago and painted on the sidewalk with it. I think she would be thrilled if she got a mortar and pestle set for her birthday so she could grind up anything to mix. While we applaud her ingenuity, it does get messy and it has led to a few not-so-stellar parenting moments.
I hope she knows I think she is the most amazing, wonderful, and special girl in the world.
Wednesday, May 18, 2011
I Need Help
I hate needing help. By need, I mean I cannot get out of bed without help. I would fall into a heap on the floor if I tried to now. The process of the deterioration of my muscles has been humbling and humiliating. I have felt guilty for being humiliated. Why am I embarrassed for having a disease? Before I started showing symptoms of muscular dystrophy I was a strong and independent young woman. I worked to remain strong in body and spirit, not letting heart problems slow me down at all. I was adventurous, spontaneous, and enjoyed helping others. No one had to help me with anything. I entered my mid-twenties feeling empowered and ready for an exciting, full life of love and travel.
Now, 12-ish years later, and I have to have someone lift me up to transfer from my bed to my powerchair. I cannot hide the fact that I have lost abilities I once had. The stares of strangers when I try to reach something on a shelf still bother me. For M's sake, however, I act oblivious to them. She needs to know the strong, empowered mom I once was. I often think about how different her life would be if she had been born a few years earlier. A few more years of remembering her mommy walking, playing on the floor, swimming, swinging. She would have really enjoyed me- I liked to play, a lot. I would have thrown her in the car for a surprise getaway to a friend's house, because that is how I used to roll.
Now, I just roll, literally. :) I mourn for what could have been. Who doesn't? I have learned that there are not too many people out there who live the life they expected to live. Learning how to be grateful is a process, and I can control my attitude.
Now, 12-ish years later, and I have to have someone lift me up to transfer from my bed to my powerchair. I cannot hide the fact that I have lost abilities I once had. The stares of strangers when I try to reach something on a shelf still bother me. For M's sake, however, I act oblivious to them. She needs to know the strong, empowered mom I once was. I often think about how different her life would be if she had been born a few years earlier. A few more years of remembering her mommy walking, playing on the floor, swimming, swinging. She would have really enjoyed me- I liked to play, a lot. I would have thrown her in the car for a surprise getaway to a friend's house, because that is how I used to roll.
Now, I just roll, literally. :) I mourn for what could have been. Who doesn't? I have learned that there are not too many people out there who live the life they expected to live. Learning how to be grateful is a process, and I can control my attitude.
Tuesday, May 17, 2011
First Post
Who knew I would worry so much about how to start my blog? I have debated every aspect of blogging in my mind the past few weeks, mostly when I am awake during the night because of the steroids I'm taking right now. Is this blog just for me? Will I share it with others? Do I want it to be a written account for M someday? Or will it end up being one big whine-fest? I suspect there will be some whining. So, instead of waiting until I figure it out, I decided to get out a first post. There. I started my blog.
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