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.