Thursday, May 8, 2014

Just Breathe

This blog update is for those of you that saw and were concerned about my Facebook status today. If you didn't see my Facebook status today because you find me by some other way, here it is:

"I have had a day involving my health that involves the rest of day revolving around me sitting in my recliner, all day, relaxing, watching TV, trying to avoid any and all thought about doctors, invasive test after invasive test, non working body parts, repeated lab work, waiting in doctors offices and procedure rooms, taking drug after drug for it not even to help and maybe even make it worse, and the inevitable that mito will completely shut my body down sooner than later. (Or sooner than I had hoped, at least).

At least the drugs numb the physical and emotional pain some.

Sorry, just a REALLY bad doctors appointment this morning and I'm so over it all. I can't be strong and positive all the time."

So for those of you who give a flying flip about why an usually positive, kick chronic illness in the butt, advocating, overcoming, warrior like me would make a status like this. It's plain and simple.

I'm so tired of having invasive test after invasive tests, blood draw after blood draw, doctors appointment after doctors appointment to basically just be told my mito is progressing and the time that it will overcome my body is getting closer and closer. Then add on all the other chronic diseases I have and I just don't have the energy to fight it off as well as some people.

So, as most of you know, I've been having A TON of trouble breathing lately. Waking up in the middle of the night choking, choking when I'm just sitting up conscious, getting winded holding a normal conversation with a person, walking  basically more than 25 feet, getting short of breath even turning over in bed sometimes.

Now remember I used to be an elite runner. And now I can't walk 25-50 feet without almost passing out because of not being able to breathe.

Anyway, I saw a pulmonologist about 4 weeks ago. He ordered an overnight post ox, a sleep study, and pulmonary function testing. They said my overnight post ox was borderline, I dipped into the 80s some but it would go right back up. The sleep study they said just showed "severe" snoring. They said that I snored like 578 times in the night time but there was nothing else wrong, even though that night I woke up choking twice during the test. I asked the nurse practitioner about it and she said well the sleep study wouldn't pick that up because I was awake when I was chocking. So I could do some overnight swallow study thing where I'd be kept awake all night and moved to see if I'm aspirating. But in my opinion, I already know I am and I'm already sleeping with my head elevated which is the treatment.

Then she said the pulmonary functioning tests showed that mu lungs could inflate to their full capacity but couldn't maintain it at all. She also said that it showed I could have an upper airway obstruction. She said I could get a broncoscopy to find out if I have an airway obstruction but even if I do they can't do anything to fix it they just know it's there. Then she said I should also go to an Ear, Nose, and Throat doctor to get my whole head area evaluated to check for obstructed airways and problem areas, which again is invasive tests with no real promise of any outcomes. Then, this is the bad part, she said honestly the doctor is just basically concluding that the muscles in my lungs are weakening. They determined this because I can take full breaths but can't hold it at all. I can't complete the tests that require fast breathing or changing levels of oxygen or nitrogen pressure. And he said that as I went through the tests I got progressively and significantly worse (which technically I should have gotten better half way through the tests because they gave me a breathing treatment) but I just kept getting worse and the doctor is pretty sure it was because my muscles were getting fatigued so it was harder.

So I, again, broke down in the pulmonologist office because the nurse practitioner basically said that my muscles in my lungs are going to keep getting weaker and weaker as my mitochondrial disease progresses until I won't be able to breathe on my own anymore, which will equal death, plain and simple. If you can't breathe, you can't live. I asked her about an inhaler or a nebulizer to help because most of my friends with mito are on these things. She said since my test showed no significant improvement after the breathing treatment the insurance wouldn't cover a nebulizer for me, and she doesn't think a rescue inhaler will do anything for me because it's a muscle problem for the most part and not a breathing problem, but if I wanted one for peace of mind she would call one in for me.

But anyway, I've basically decided (at least for right now) that I am done with invasive tests. I'm done with repeat lab work. I'm done with appointments every other day. Now that we know it's in my lungs I'm living my life as best I can. I am so tired of all this medical stuff, I need a hiatus. I will not be going to a Ear, Nose, and Throat doctor. I am going to try to get in with a different Pulmonologist that one of my friends with mito sees because he may have some ideas about the muscle weakness and suggestions of what to do, she says he is a really awesome doc.

But right now, lately, I've felt like my whole life has revolved around my diseases and I need it to stop. It's like in the song "Just Breathe," there is that line that says "life's like an hourglass glued to a table"

That's how I feel right now. My hour glass is glued to the table. There is no turning it over. And when the sand runs out. That's it. No more time left. And that's a scary place to be. Right now I just have to focus on living, and breathing, as well as I can that is.

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