Just Got a New Diagnosis

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Today I thought I would talk a little more about my life with multiple disabilities. I just got some news that I’ve been waiting for for a couple weeks and thought I would share it.

For several months, my doctors have been encouraging me to get tested for sleep apnea. This started for a couple reasons. First, I’m considered morbidly obese. I have lots of health problems that make losing weight really hard. Second, my tongue is too large for my mouth. This is something my family and I have known about since I was little. Doctors told my mom that my tongue was too big, and this is something I still struggle with. It’s hard to keep my tongue inside my mouth unless I concentrate on it, and I sometimes drool. I also bite my tongue occasionally since it overlaps my teeth, and my wisdom teeth don’t have enough room, so they regularly cut the sides of my tongue. When my sleep specialist looked in my mouth, she noticed how large my tongue is, and how much it gets in the way. She said she should have been able to see at least a small part of my airway, but she couldn’t. Finally, I’ve been dealing with severe fatigue and memory loss. Some of the fatigue can be explained by my fibromyalgia, but it’s worse than it should be, and that can’t explain the memory loss. When I talked to my primary care doctor and the sleep specialist he referred me to, I learned that the memory loss, constant unrefreshing sleep, fatigue, and other problems can be caused or made worse by sleep apnea. Fibromyalgia may also be linked to sleep apnea.

A couple weeks ago, I finally got the chance to get a sleep study done. They stuck lots of wires and electrodes all over me, but it was less uncomfortable than I expected, and I was able to sleep more easily than I thought I would. When my mom and stepdad picked me up, we were told that I should hear something within 7 to 10 days. This was on the morning of June 18, so I’ve been waiting to hear something for a while and was starting to wonder why it was taking so long since it’s been more than 10 days.

Yesterday, I checked my voicemail. I have to do this regularly because my phone doesn’t always ring when someone calls. I had a message from the sleep center, but it was too late to call them by the time I heard it. I called them back this morning. They had me on hold for a while, but someone who could tell me the results finally answered. I was told that I have moderate sleep apnea, and that at the study, I had had obstructions, or times when my airway was blocked, 18 times per hour, which sounds like a lot.

I’ll be getting an APAP machine soon. It’s similar to a CPAP machine, but wher the air pressure the CPAP machine uses constant air pressure to keep my airway open, an APAp machine adjusts the air pressure automatically throughout the night depending on how I’m breathing. The doctor is ordering the machine through a company that takes my insurance, Medicaid, and I should hear from them any time now. They’re going to bring out a machine and teach me how to use it and let me pick out the right mask type for me.

We’ve suspected that I had sleep apnea for a while now, so getting this diagnosis is kind of a relief. I’m so ready to get the machine and try it. I’m hoping it will help me sleep better and start feeling better. My doctor wants me to use the machine for 31 days and then follow up with her. It’s yet another diagnosis, but I’m okay with that since this is a step toward getting my health under control. I’ll probably do another post after I get the machine and try it out.

Do any of you, my readers, have sleep apnea? How has it effected you? Did getting it treated help you have a better quality of life? Leave your thoughts in the comments.

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