Friday, March 21, 2014

Participate in next post! Any questions?

Thanks to everyone who wrote already!  I'll be posting the entry answering questions over the weekend.  Again, the reason for this project is I prefer a sincere question over uncomfortable lengthy stares everywhere but my face, obviously checking out my differences. But what is different about each of us is what makes us special!

See you soon,

Comment or email to submit. I'd also love to hear your stories

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

Monday, March 17, 2014

Ups and Downs

My series if you will, of honesty with this disease, continues.  I know it is not as upbeat as past entries, but like I wrote at the beginning, I want and need to do some honest expression.  God is my rock and salvation, and in Him I find my strength.

There is a certain element of frustration and tension I find myself in more often than I'd like.  I'm always jerking my head or body off the end of a line or tube forgetting it's there and walking off. I'm always getting tangled up, twisting a foot in three while a fourth snares around my waist.  I'm all the time trying to reach something while my head is strained backwards, because that's as far as my bipap tubing will reach.  I was trying to clean my room last week at that awkward angle and felt like crying, as i was to tired to unhook it from the humidifier, find the connector to make it one long circuit, and drag the heavy vent off the table and across the room; let alone continue cleaning after all that fuss.  That day, I felt as though I had been utterly defeated because even the simplest of tasks were so beyond my ability.  Each day I try any such task, I failed.  No, that isn't true.  I merely cannot complete the task but am glad I tried.  I'm so grateful to my parents for their support and assistance in almost every facet of my life, around the clock.  Without their support and love, I may have given up a long time ago.

Doing a sterile dressing change on my central line is far less exhausting than changing my clothes and cleaning up a bit as the tangled mess that ensues simply trying to get clothes changed out around pumps and bags, all the while trying to keep a bipap piece in my mouth, is such a circus that I rarely bother.  Everything with mito takes extra effort, but that merely means that any completion is ten times as rewarding.

Having such simple human acts such as showering, changing your clothes every single day, and getting to go out and be in school as an almost 23 year old in what should be my senior year has brought a word to mind repeatedly as of late.  Dehumanizing.  I feel more machine than person many times as without them I wouldn't be here.  I'm grateful, and in the last few days I have found my joy again with some improvement in my energy, but overall these past few months my heart and mind have been very sad.  I finally decided I needed to do things to cheer myself up, but it had to wait till some energy came back into my bones.  I have started a blanket project for the hospital, and am looking forward to a energy for life walkathon!  If you have a child that was lost to mitochondrial disease, we are doing something to honor them at the walk.  Please contact me!

Sharing all of this is a bit embarrassing and difficult, and I'm tempted each time to just delete it and not bother.  But I deeply want to explain mito in a raw and honest way.  I want people to understand what this disease is beyond the textbook.  I'm not officially  diagnosed, but it has been my working clinical diagnosis for a few years.  I have met so many others exactly like myself, saying the same statements to each other as we explain our daily struggles.  Their stories need to be told as well.  I hope I can do it justice.  It feels impossible, but even if I tell a tenth of it I will feel better for having tried.   

With love,