Hi-ho, Hi-ho, It's Bi-PAP-ping We Go

Yes, that is the most bizarre title of all time. I really just want you to all walk around with the "Off to Work I Go" song stuck in your head! (You're welcome!)

Doug dug (ar, ar....my name is a verb too!) my ancient Bi-PAP machine out of the attic yesterday afternoon and "McGuyver-ized" it. I use the nose mask over my trach and kind of smoosh it together, and Doug got all the other hoses and pieces parts together and tweaked the inspiratory and expiratory pressures til it felt comfortable.

In case you are wondering, a Bi-PAP is like a ventilator. When you breathe in, it gives you a push of air in. When you breathe out, it kind of relaxes and the air comes out. It's kind of weird. But it is a workout! All I can think while all this air is rushing in is, "O my GOSH I can't believe "normal" people get this much air with every breath!" Yes, peanut gallery, I know "normal" has NEVER been in my vocabulary, but you get the drift. But seriously....if I could breathe like that every day, every breath! I could run a marathon!

Which also makes me realize just how weak I am...and how much I was pushing myself, and how blessed I am that nothing worse happened. I mean, where I am is bad enough...but it could have been worse. I guess God still has some work for me to do!

Anyway. I still have zero stamina. But then again, my O2 was 63%, so I suppose. Oh to rewind 20 years and gulp huge breaths of air....as much as I wanted. I know it wouldn't make a difference now, but it's amazing what you THINK you want when you're younger.

And isn't it ironic that we won't listen to others? There are SO MANY wise people out there who have much to impart...I wish I had listened when I was younger. Again, it wouldn't effect my health the way it is now or anything, I just know I missed out on some blessings and probably got a bunch of hurts I could have avoided.

I guess that's why part of me wants to document my journey. If indeed ONE person has a better life, avoids a huge mistake, gets benefited in some way, grows closer to the Lord....then it's all worth it. If more than one...what a blessing!

I have a physical therapist coming to reopen my case this morning, and a friend coming over to help with Jacob (and me!) as well. Then the O.T. comes at 4:30 (after my nap!)...full day for a sickie! OH, and my new 10 minute breathing workouts. Whew!

Frustration

PPPhhhhttt.

That's how I feel today. It's Monday. I'm tired. (What is with waking up every hour to pee? I know I drink a lot of water, but that was ridiculous!) Jacob seems to have forgotten how to do everything he has learned to do independently: getting dressed, going potty on his own (every. five. minutes.), feeding himself....Sometimes I wonder about that child. Genius one second, scatterbrained the next. Oh, wait, that's just like me!

Blackie is doing much better, thank goodness. The pain medicine works wonders, and he is once again sleeping through the night. I know this is all normal mom stuff....I just wished it stopped there.

My fibro has really been acting up...could it be weather related? I have been so focused (not by choice) on the diabetes and MG that I don't even really know that much about what affects fibromyalgia. And frankly I don't have the time or energy to find out.

I'm trying to write...but I never have time! (Yah, I know....welcome to life). I asked my husband if he would just please support my writing, and he says "I always have honey!" So I try to write a little bit at night when he's home to watch after Jacob, and I get: "Are you gonna be one that thing all night?"

OH...this is my favorite: a couple of years ago, to TRY to make my point about my hubby working outside too much and not spending enough time with Jacob, I was like: "If something happened to him, or me, would you be like, 'Gosh, I wish I would have gotten one more project done,' or 'Gee, I wish I would have spent more time with my son?'" Which was NOT well-received, let me tell you.

So now I get hear "If something happened to me or Jacob would you say, 'Gee, I wish I would have written one more paragraph, or Gee, I wish I would have spent one more hour with my family?'" I was like, I'm already with him 24/7, what's your point?? "Family time" by the way, is sitting on our butts watching TV. It's not like we bond over Whale Wars for sh!ts sake.

Ug. Sorry. I just get tired of fighting for every single thing. Breathing. Walking up the stairs. Getting a MOMENT to myself. Putting the dogs out. Not being in pain. Getting hubby to spend time with us... time that matters. I have ZERO energy, and I'm supposed to be a wife and mom. And friend. And sister. And daughter. And financier. And psychologist. And housecleaner. And medical genuis. And playmate. And writer? Yah. Right.

Anywho. Sorry for the downer. Just frustrated.