My goodness! This last week has been a whirlwind. Tracy came up from Florida for a week, but it seemed more like a day or two. It went SO fast. We went to Birch Run and Bronners...SO fun. LONG day though....we left at 8:30 in the morning, and didn't get back til 10:30 at night. Yikes. Exhausting!
I've also had Airway Oxygen here every day except Sat. Sun. and Monday for something or another. Crazy. I'm behind on everything, including my blog! I've got pictures to post on my jewelry site, and a few on facebook as well.
Last night I had to requalify for my oxygen AGAIN by doing ANOTHER pulse oximetery test without oxygen, but with my vent. So imagine me trying to sleep with a pulse ox, wrist guards for carpel tunnel, my vent attachment into my trach, the hose clipped to my nightshirt with a hairclip, kleenex shoved up my nose to stop the air leak....Yeah. I was a beaut I'm sure.
Try adjusting a tiny part of the adapter (that fits snugly INSIDE my trach) with a pulse ox on. Try doing suction with a vent (have to sit up, detach, do suction) with a pulse ox on. My Airway Oxygen rep. told me Medicare needed at least 4 hours. They got 4 hours and 3 minutes.
PLUS, I have to have some stupid walking pulse ox test at the flippin' hospital to qualify for portable oxygen tanks. Portable. Oxygen. Tanks. I have the prescription for oxygen from my doctor. I have a chronic, incurable neuro-muscular disease, but I have to drive an hour away to have a 6 minute walking test, and drive an hour home, because I have to qualify by MEDICARE'S standard. Don't get me started. That's a whooooooole separate post.
Then I turned on my oxygen concentrator so I could sleep better, and took that $#@*&% pulse ox off. What a pain. So I finally get to have oxygen (at night anyway). I turn the thing on, and at first it sounds just like my old one.
Until I hear "the noise."
Have you ever heard the air brake on a semi tractor or a bus? You know, the loud "Pshooosh."
Mmmm-Hmm.
Every.
Five.
Seconds.
At 3:17 AM, I'm standing in front of this O2 concentrator saying (loudly) "Are you KIDDING me??" I don't know how I managed to sleep, but I did. Oh, the visual.
Hopefully tonight I can just sleep. No tests, no projects, no qualifying, just SLEEPING!
Fighting this disease called Myasthenia Gravis (MG) with a little humor, some good friends, and a lot of help from Above.
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2 comments:
Ear plugs Kerri, they really work!! I hope tonight is better and that you get some much needed rest!!! Love you.
It does sound so fun and exhausting with your friend. I do hope you get some sleep....
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