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.

Traffic Jam in Adam's Canyon

Labor day. No school and no work. Kyle and Jordann (his friend-that-is-a-girl) wanted to do something. I'm not sure if it was Kyle's idea or Jim's idea but someone thought it would be a great day for a hike up to the waterfall in Adam's Canyon. And it was. The day started out a little chilly and breezy, just right for being outside. The forecast was for the high temperature to be in the high 70's to low 80's. (have I ever mentioned how much I love fall in Utah? I think I have!) The bad part about it being the perfect day for a hike is that lots and lots of other people noticed it also. There were SOOOO many people on the trail. Jim and the boys have been up there several times. He said he has never seen it that busy, ever! Monday was my first time all the way up to the waterfall. When we got to the the top there were about 8-10 groups up there taking pictures and having lunch. We found a place to sit and tried our best to enjoy what we had packed for our lunch.

You need to know something about me before I go on. It bothers me when people don't watch what their kids are doing. I have tried to teach my kids to be aware of their surroundings and be respectful to others around them. I don't want them to be those loud or obnoxious kids that make you wonder who their parents are. I understand that little girls like to scream and little boys like to run and jump. But there needs to be a level of respect to those you are sharing public space with. A few little screams from a little girl is not as bad as letting her scream at will. Boys running and throwing rocks is fine as long as they aren't hurting or bothering anyone else. Kids have natural tenancies, parents are there to keep them in check!

That being said, it would have been a perfectly relaxing half hour or so up at the waterfall except for that one group. The one with the boy waving sticks around like swords, throwing rocks all over, running around and between other groups, and with dogs off their leashes. To top it all off, they were all being supervised by the dad that yelled idle threats with a booming voice but never got up off his seat to do anything about it. The dogs kept coming over and sniffing my lunch and the boy finally hit someone with his stick sword.

We were able to take a few pictures. We forgot the camera but I had my phone. Good thing it takes OK pictures.

This is me keeping an eye on what my son is doing. I don't think he was bothering anyone else in the vicinity.

When we had enough, we started back down the trail. I think there may have been more people on the trail on our way down! All in all, it was a great way to spend time with Kyle and Jordann on a lovely almost-fall day.

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Now as a side note, sorry if it sounds like I am a bit grumpy as I write this, it's probably because I am. Grumpy that my body is still recovering from that hike that should have been no big deal. I feel REALLY bad for my husband who has to put up with me and my "condition". He is Mr. Adventure. He loves to get out and do fun things. I love to also but it just takes so much out of me now. I am fine when I go for my daily walk. In fact, I could walk all day long. I love walking. But I used to love running. I used to be able to do lots of things I can't do anymore. Well, I can, but I pay for it later. If my heart rate gets too high I get dizzy. If I push myself too hard I need extra time to recover. Poor Jim had to wait for me several times along the trail and that was super frustrating for me. But not for him. He was so patient. I should be more patient with myself but I remember all the things I used to be able to do. I don't like feeling like an 80 year old when my body isn't even 40 yet. When we got home from our hike, I showered and laid down to rest for a bit. I fell asleep for four hours! I got up and made dinner, then I went back to bed and slept all night! There are a lot of times I avoid doing things because I know it will wipe me out. Most days I am just grateful my family is so helpful and that things aren't worse than they are. But sometimes, especially when I want to keep up with Mr. Adventure, I get frustrated with what my body is going through knowing that it most likely will not get better and slowly get worse.

The Miracle We Call Our Body and The Doctors Who Help Us Figure Them Out

I don't like complainers. I have tried hard to not be the type of person who whines about things. Jim might think different because, for the most part, if I do have a complaint, he's the one that hears it. (Love you, honey!) So when I feel a little bit down or sick I usually just trudge through it because I know things will be better sooner or later.

Well, things started to really go downhill last August. What I thought was seasonal allergies turned into a 3 month battle with a sinus infection. I would feel crappy for a couple of days then better for a couple of weeks. But then I would feel bad again and the cycle repeated itself four or five times. I had never had a sinus infection before so I didn’t know what to look for. It really got me down to be sick so much when I am usually pretty healthy. I finally went to our family doctor, who is also a neighbor of ours, and got the blessed antibiotic. I thought I was on the quick road to recovery. But my body said, “Not so fast!”

By then, the cold weather was in full swing. I know I suffer from mild Seasonal Affective Disorder. I am really affected by lack of sunlight and warmth. But this year my Reynaud’s Syndrome (I think I blogged about that before) really acting up. I have also been feeling a lot more fatigue than my usual winter laziness. There have been other things that have been bugging me but are tolerable so I just push them aside and get on with life.

One very cold night in particular was our ward Christmas dinner. My hands would not warm up and I showed them to my doctor, who was also at the dinner. He was shocked at how little blood flow there was to my fingers and told me to come in and see him so we could do some tests. When I went in, we talked about a few things I was concerned with; my fatigue, my Reynaud’s and some other things. He decided to take some blood samples - and when I say some, I mean about a gallon! He did just about every test he could think of. He tested my vitamin levels, my thyroid, my cholesterol and several other things. One of the tests was an ANA test. It tests for the presence of antibodies in your blood. If you have a high level of these then you probably have a connective tissue disease or other autoimmune disorder. Well, my levels were high. He speculated that it may be Lupus or Rheumatoid Arthritis. He decided to send me to a friend of his, a rheumatologist, someone who specializes in this type of disease.

Apparently this specialist is so special it takes months to get in to see him. Luckily my doctor is friends with him and we only had to wait about six weeks. It was an agonizing six weeks, waiting and wondering. I worried all through what is supposed to be a really happy month. Jim suggested we not talk about it with the kids and other family members until we knew exactly what to tell people. And just like Austin and his Autism diagnosis, I just wanted a name to go with what had been getting worse over the last year.

The day finally came just this past Monday. We woke up really early because this doctor is almost an hour away and he was seeing us before his usual first appointment. We talked to him for about an hour total but I could see it in his eyes that he knew exactly what we were dealing with in about 20 minutes.

I do have an autoimmune disease. It is called CREST Syndrome or Limited Scleroderma. Right now I am only showing a few of the symptoms. The Reynaud’s was the first. That started in early 2002 and has gotten progressively worse over the last eight years but I have just been dealing with it, trying not to complain. I try to stay warm, especially in my hands and feet. Another symptom is what they call a "lazy esophagus". Sometimes when I swallow food it takes a while, and a few drinks of water, for it to go down. It was just another thing I would deal with. I never thought about telling my doctor. I don't think I even said anything to Jim more than once or twice. The other symptoms are skin related. You can click on the link above to read the Mayo Clinic definition or you can click here to read something from the Scleroderma Foundation.

I have been put on one prescription medication, a Calcium Channel Blocker, to help with blood flow to my fingers and toes. I am also taking a low dose aspirin and vitamin D - which he recommend that EVERYONE (even little kids) take vitamin D, especially anyone that lives in Utah or anywhere north of Los Angeles. This also helps with Seasonal Affective Disorder, bone health, diabetes, and all kinds of heart problems. Most of us just don't get enough sun light to help our bodies function properly. I am going next week to get and Echo Cardiogram and a chest x-ray. One of the things that my happen is pulmonary hypertension because of collagen build up that may happen around my heart and lungs. But that's WAY down the road. The other symptoms will just be treated as they come up, when they come up, if they come up.

The weird thing is that I have much less anxiety now that I have a diagnosis than last month when I had no idea what was going on. I am so glad there are people out there that went to all those years of school just so they can help people like me. I am also thankful for the doctors that recently helped Jim's dad. He was going to have some cataracts removed and the doctors wanted him to have a full physical. He had a chest x-ray that showed a little shadow on his lung. The biopsy said it was cancer and within a week he was scheduled to have it removed. It was a very scary time for the family. He had the surgery last Friday and it was very successful. They were able to remove all the cancer and he is on his way to a full recovery. It will be a long and hard road but we are glad he has been well taken care of and will be with us for many years to come.

Our bodies can be such wonderful things. They allow us to do and be so many things in this life. I have tried not to take this gift that has been given to me by my Heavenly Father for granted. I try to eat healthy while still enjoying yummy food. I try to stay fit without spending hours and hours at the gym. I think I have an OK balance of that in my life. (The doctor did say my cholesterol, blood pressure, and blood sugar levels were really good) I have tried to learn and grow as much as I can. I have had the blessing of having three wonderful, healthy children. But we are mortal and there are things that will happen to these bodies while we live here on earth that may be unexpected. That is a guarantee. But I know if we put aside our selfish reasons for wanting our bodies to last forever (beauty or fame) and use what health and energy that we have left to help and serve others, our time spent in these mortal bodies will not be wasted. In fact, if we serve others, I personally feel that we will be more joyful in what little time we have in our mortal bodies and WAY less likely to be a complainer!