Tuesday, March 18, 2014

And the floor is yours! Questions Welcome!

Help dear friends,
A question in my comments spurred me to reach or and ask you of there's anything you don't understand, are curious about, et cetera... Anything, please feel free. If I'm uncomfortable I just won't answer it with no hard feelings so please be open with any questions as I know by the blatant stares I get from strangers I am not like everyone else. Therefore, I don't want to be a mystery and a freak. I want to be understood and for everyone to be comfortable around me. I don't any things to be weird.
To start things off for those who know nothing about me and my awesome jewelry:
I have a suspected  mitochondrial disease, meaning it's our Best guess because it makes sense and I fit the bill. Many are never formally diagnosed because we have only found a small amount of the nuclear genes that can cause it.  The mtDNA genes seem to have been identified, that is passed from the mother only but nDNA defects are when both mom and dad are both carrying a bad gene and both pass it on. They may not be affected & only have that one gene (are just carriers). You can also spontaneously mutate a defective gene that's disease causing for mito.
Since the mitochondria power the body and turn food into energy, we rely in them for everything. When the Mitochondria orgenelles fail and cells die this causes organ systems to malfunction and even fail. No organ system is out of it's reach; all ages and race are at risk.

The question I was asked yesterday was if I am on my bipap all the time. I'm fortunate that I can manage a little time off of it, although I tend to gasp a lot unless I'm sitting still or of it for to long in any manner.
My FEV1 IS 38%, It dropped 14% in 2 weeks about a month ago when I had a sudden decline for no reason we can find.  I had been nearly off of my pain medicine and hasn't been sick. 18 months ago my MIP MEP (measuring strength) were around 20% which is also very low. We don't know what it is now, add it's not worth wearing me out more. My diagnosis is chronic respiratory failure, and I have the trilogy 200 and use my mask most of the time but the sip and puff feature is nice to give me a break here and there. I'm eligible for a trach based on my numbers and depending on which care provider you talk to I should get it to eliminate dead space, breath better, and eliminate the terrible air pain I get in my Belly from my poor motility. But I have decided against out for multiple reasons-the main one being since in not doing so fabulous anymore I don't want to merely put myself on life support, also of weakens lungs further and is become 100% dependent taking away mobility.
I ask that while questions are okay, please respect the decision. Than you so much!  The decision is not a light one, and more is in it than I've divulged.  thank you for understanding!!
The floor is now yours!
Comment or email tradingsorrows@gmail.com


  1. Thanks so much for explaining! It helps me to understand your condition and your daily life better. And it further confirms that, yes, you are an amazing woman! :)

  2. Hi Milly! I have a question, what do you do with your j tube now that you are on TPN?

  3. I posted this the other night and for whatever reason, it didn't post. My only questions were (1) how old are you and (2) whether you've been symptomatic of mito your whole life or from what age did your issues arise?

    (OH and one more - is the wheelchair for you due to fatigue? how long have you had one? As you know . . . I have a little girl with a snazzy wheelchair. Thank you for sharing your story. In ways I can't completely explain, it helps me immensely to see adults with disabilities living their lives with joy and love and gratitude. So, I send you so much gratitude for sharing yours with me).

    1. This warms my Heart! Thank you so much! I'll answer each one in my next blog. Tell Sammie hi!!