Wednesday, April 13, 2011

Glue Flakes Keep Fallin' from My Head

In an effort to continue to diagnose the severity of my autoimune disorder, my doctor ordered some more tests. One of the things that may happen with my soft tissues is called Calcinosis (calcium deposits). One fear is that this happens in my lungs. If it does, my body will not be able to absorb oxygen like it should. That could cause pulmonary hypertension. It is scary when you take it in all at once but I am pretty far from that. That is why my doctor has me have a yearly chest x-ray and heart ultrasound. It is also why I was sent to have a "lung study" done. He just wanted to get a starting point so we can monitor it for the future.

So I went to have my lung study at the local hospital. I got to sit in a Plexiglas box and breathe into a tube several different times in several different ways. The computer did all kinds of calculations, the results were sent to my doctor and we met with him to go over the results. He said my lungs are already starting to have some trouble absorbing oxygen. Not much but enough that it may be affecting my sleep and that may be why I have been getting light headed when I over exert myself.

So, he wanted to do another test. He wanted to check my oxygen levels while I sleep. I went to the hospital and picked up a pulse oximeter. I got to wear it for a night while I was sleeping. Those results were also borderline so he ordered another test. He wanted me to do an overnight sleep study at the clinic.

Last week, I packed up my knitting and my pajamas and headed to the sleep lab. I checked into the lab at about 7:30pm. I got settled in for a little bit. I started watching a movie and knitting. It was quite comfortable. I was warm enough (that is always my greatest fear) and the bed was very comfortable.

Then, the technicians came in to hook me up to all the sensors. There were so many it took about 20 minutes. The beautiful self portrait below only shows about 2/3 of the wires that were connected to me.
What you can't see are the wires stuck to my calves, the other strap wrapped around my waist, and the six sensors glued to my scalp. They had to rub a solution on my head to clean it, then they glued the sensors on and dried them with a little air compressor. They gathered the wires and hooked them up to a plug behind the headboard. After that, they had the audacity to wish me a good night's sleep.

It took me a while to fall asleep. I put in my ear plugs and put on my eye mask. I finally felt like I was just in a deep sleep and far in the distance I felt the lights go on and heard the door open. It was time to wake up. (Well, what they thought was time to wake up. I wouldn't consider 5:30am an hour I would generally choose to wake up.) It took a little less time to unhook me from all the wires. They had to spray a solvent in my hair to get the sensors from my head unglued. That was fun. I gathered my stuff and took my greasy hair home. I crawled into my own bed. It woke Jim up so we had a few minutes to chat before he had to get up and get ready for work. A few hours later I got up and got in the shower. They told me the rest of the glue would wash out in the shower, but it didn't.

It is a week later and I should be getting my results anytime now. It is a week later and I am just starting to feel like I am making up my sleep. It is a week later and I am still picking glue flakes from my scalp.

I feel like I have been a horrible wife and mother the last week because I have felt so exhausted. I hope my family understands. I know they will never feel what my body is feeling, just like I don't really know what Austin's autistic brain is thinking. But I hope they can try to understand that I'm not just lazy, just like I know Austin isn't. It is just a different way of functioning. It is very hard to describe. It is also hard to know that with both of us, even though our diagnosis' are drastically different, it is our reality. A reality we will both live with for the rest of our lives.

We live in these fragile bodies for what we think is a long time. It is sometimes hard to keep things in perspective. It has been hard for me this last week. Then I get reminded that this life is very short. It is the eternities that we are preparing for. I know one day I will be able to sit down with Austin and have a wonderful conversation. I also know that one day I will be again be able to climb a mountain.

It's OK if that day doesn't come in this life. I know the next will be even better.

Monday, April 4, 2011

Apearantly , "Sleepless in Seattle" Means Extra Sleepy When You Get Home!

I guess when I don't blog for a while that means I am doing stuff that is more fun than blogging. That has defiantly been true this last few weeks! I have been knitting up my hats. I am done with the first two and well on my way to reaching my goal. I just purchased a bunch of sale yarn today that is going to make some really fun hats. I finished my first on a bus...

Kyle is in a wonderful choir at Syracuse High School. It is called A Capella. They have the BEST teacher and all the kids a wonderfully talented. I love listening to them sing. Every spring they go on a "choir tour". (I guess they have only gone three times because the school is only three years old) Last year they went to Southern CA (Disneyland). I'm not sure where they went the year before. This year they went to Seattle. I was fortunate enough to go with Kyle as a chaperone.

The purpose of Choir Tour is to expose the kids to other cities and cultures and to get instruction from other choir directors. It also helps to the kids to sing better together when they are a close knit group. Traveling like they do definitely helps them bond to each other and become better friends.

We left on a Tuesday night at 9pm. The kids look happy in the picture below because I took it at the beginning of the 15 hour bus ride and not at the end!
About three hours after I took that picture they were sleeping all over the floor of the bus. They were in the aisles and under the seats. By the end of the trip the bus smelled of feet and Cheetos.
Our first stop was before we even checked into the hotel. We were able to walk around Pike Place Market for a couple of hours. It was so nice to get out of the bus but we were tired from not getting a good night's sleep. After that we walked down to the old downtown area called Pioneer Square. From there we went on a Seattle Underground Tour. When it was dinner time, we walked up to the Seattle Hard Rock Cafe. That was fun for me. I don't think the kids really appreciated the amount of Nirvana and Jimi Hendrix memorabilia that was on the walls. We finally got to check into the hotel after dinner. My job was to always make sure my two rooms of girls were in their rooms by 10pm and they were all there whenever we had to meet somewhere. My girls were especially good. I never had any problems.

On day two, we boarded the buses around 9am and headed to the Chittenden Locks and Fish Ladder. They use the locks to maintain a particular water level in Lakes Washington and Union, so the sea water doesn't mix with the fresh water of the lakes, and to get the boats to the right water level to be able to travel between the two bodies of water. The fish ladder is along the side of the locks and that helps the migrating salmon (and other types of fish) get up and down stream. Then we went to Seattle Center where we went up to the top of the Space Needle. We also got to look at and try at all the cool stuff at the EMPSFM (Experience Music Project and Science Fiction Museum) That was WAY fun. We then went back to our hotel and got ready for dinner and the Seattle Symphony.
After a long day, some of my girls wanted to have "girl chat" in their hotel room. It was fun to be able to have that time with them because I don't get that in my house full of boys!

The next morning, the kids had one of their clinics. This one was at Seattle Pacific University, kind of. It was in a church just of the campus but it was with one of the music directors from the university. He taught them some really great stuff. I didn't know those kids could sound any better but they did! And the acoustics in the church were great!
We had a little bit of time before dinner to stop at a park and take some great pictures. These are two of "my girls". They now call me Momma Barber!
For dinner, we went on a harbor cruise. There were sandwiches and finger foods and great views of the city.
But the best part of the night, and the whole trip, was the D.J. and the dancing! WE had a great time and the D.J. said we were one of his best crowds ever. Everyone danced and had a great time. My biggest mistake was having "girl chat" again late into that night. I am not as young and I don't bounce back as easily as those teenagers!
On our last day, we checked out of the hotel and went to another clinic at University of Washington. We also had a little time to go and shop at the University Book Store. It was the only day we got a little bit of rain off and on. We got sunshine for a few hours in the afternoon. That is when we had some time to drive up to the Seattle Temple.
Our last dinner was at Tillicum Village. We boarded a ferry boat that took us across Puget Sound to Blake Island where we had a traditional Squamish and Duwamish salmon bake. Then the Native Americans put on a show of story telling and dancing.
When we boarded the buses after dinner it was time to head home. The bus was a little quieter on the way back, but not too much. We arrived back at the high school at about 11:00 the next morning. I just laid around for the rest of the day. I was still pretty beat from all the walking around, the late nights and the dancing. The next morning I got up, got Jim to work, got the boys off to school and then got back into bed! I fell right back to sleep. Jim sent me a text message at about 10:30 that I didn't answer so he called me at about 11:45. That is what finally woke me up!!! I guess I needed the sleep. My sister even told me she was a little worried about me doing too much that week. I kind of feel like it is OK as long as I have a recovery day. Don't tell my doctor that I wore myself completely out! He might not like my "recovery day" theory.

So last Friday night, Kyle and I invited all the kids over to the house for a reunion of sorts. We roasted marshmallows in the fire pit, ate too much pizza and played Rock Band until curfews.
Not all the kids came but most of the ones that I had "girl chat" with and some of the others that I got to know over the week. It was a good time. I have a feeling, now that they know where we live, that they will be around a lot more, which is totally fine with me. I like it when our house is the hang out spot!