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,
Milly

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

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
Xoxo

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 www.UMDF.org 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,

Amelia

Night.

Nighttime.  It's usually my favorite time; from the moment I get up I'm aching for it to be bedtime again as the thought of facing the coming seven hours seems almost impossible.  But when insomnia or intense symptoms are overpowering me, it too feels torturous.  Everything aches.  I'm too sore to lie on my side because my shoulder keeps subluxing, but my back hurts so much when I sit up too long.  Lying on my back is often uncomfortable on other joints, and my lines and tubes tangle easily and feel cold against me instead of hanging off the side.  I hate the feel of them, even after all this time.

Insomnia is common in all my disorders, even my suspected diagnosis of mitochondrial disease.  Mito means my body cannot turn food into energy.  Ironic!  I'm unable to sleep and feel so unbelievable exhausted I could burst into tears.  Instead of doing that as it doesn't do any good, believe it or not, I try to distract myself.  There's always a friend also battling the night as well, or a good Gene Kelly musical to make me smile.

It's harder to ignore all the little things at night.  A sore nose from a rubbing bipap mask, curving spine letting off sharp pains with ribs and neck following suit.  Eyes even ache at this time of day.  It's weariness and pain and fatigue so strong that I feel it so keenly as though every cell has many pounds of sand weighing them down.  Breathing and thinking and being and thinking takes effort.  Sometimes, it gets to the point where I just pass out in and out and breathing gets so shallow and slow that it feels as though I might stop. Chronic respiratory failure is a scary and hard disease, and despite my AVAPS aiding my weak breaths 24/7 I struggle constantly

Something, Somebody, much more powerful is helping me lift my tired hands and inflate my weary lungs more than any machine.  Stronger than IV fluids or TPN giving me sustanance.  I know God is my ultimate provider and sustainer of life.  I know He is the One who decides my going out and coming in, my every day here on earth.  I'm ready and waiting for each decision He has for my life, because I trust Him implicitly.

I could never explain fully what this feels like, though as I said in my last post I really want to try.  More important to me though, is that you meet my Savior.

Love,
Milly

Sharing

Hello my friends.

For all these months, the years of having a constant urge to write had left me.  I haven't really been journaling or doing any logging like I had for so long.  Lately, it's been creeping back ever so slowly. I don't have the vivacious need to write, but I do feel a tug.  I know that not doing so will leave large holes in my story that I have for so long painstakingly archived, if not well at least in almost its entirety.

While I know I have no energy to do continue that, I at least would like to tell some daily stories that might be boring but will at least share the struggles and triumph of living with this disease.  The simplest of chores gave me the inclination.  I was trying to get myself put back together after a shower.  As always, it took an unreasonably long time, at least twenty minutes, to do what would take you 2 minutes or less.  My two IV fluid lines got caught up in my bipap machine at least 4 times, tangled up in me, tangled up in everything else it could find.  I kept tripping all over my bags and the vent till I wash shaking.  I have to get dressed and hooked up to things in the proper order or I'll be all tangled yet again.  By the time I'd finished I was so frustrated I was reminded why I only go through the process of a halfhearted shower once a week, something most do once on average without even thinking about the ease of it.  It's exhausting and I have to literally rest up to get it done.  Other chores take similar buildup in stamina in order to achieve, such as dressing changes or a simple trek down my stairs to sit with my family for an hour.  At the end of that time I'm exhausted and can't wait to go lie down in the silence and solitude of my room.

I try to keep my blog posts light and positive, and I always want it to be known how truly blessed I have been in my life.  But I feel the urge to share the reality of what not only I but all who share my diagnosis's go through, for when we share I'm constantly amazed by the unity in our stories and feelings. I want to share for them as well.

Because of my limited energy, please forgive any mistsakes.

Blessings,
Milly

"they go from strength to strength"

Well hello!

My surgery went off so smoothly that my surgeon could scarce believe it.  He still talks about it every time I see him!  We both give God the glory as each of my doctors were expecting at least a small amount of complications.  I'm grateful to the anesthesiology team for their skill in avoiding certain drugs (muscle relaxants etc) that would have weakened my respiratory system, but are most always used in general anesthesia when putting somebody on a ventilator.  My surgeon did a wonderful job as always and encountered no problems.  Also, GI was able to come in after and give me a G-tube which has proven to be invaluable in symptom control, as well as releasing air so I can use my biPAP.

My Bible's bookmark has seemingly been permanently set between the pages of Psalms, the 85th.  The last six months have been particularly challenging, but as always reading passages brings me comfort knowing the truth they contain.  I love John, James, and Psalms in particular.  (John 15 has been my 'read' this week on repeat!)  

I just wanted to share this with you: One of my favorite doctors made a note about going from "strength to strength" as an encouragement to me.  I found it in my favorite Psalm 85, which I found to be very ironic.

Vs 5-7: "Blessed is the man whose strength is in You whose heart is set on pilgrimage as they pass through the Valley of Baca.  They make it a spring; the rain also covers it with pools.  They go from strength to strength.  Each one appears before God in Zion."

I think it's such a beautiful thought.  Even when nothing is going right, and it feels like there is nothing to keep me going-nothing to distract me or give me any purpose-I can rest assured that His strength is enough to carry me.  Often though, I do have little things throughout the day that make me smile, little "strengths" as I now think of them that keep me going.  Whether it's a bit of time studying, a message from a friend, or a bit of Scripture.

I hope everyone has a beautiful week, and a blessed day.
Love, Milly

Psalms and Stars

I am so grateful for today!
Some days I am less inclined towards gratefulness, but as Psalm 118:24 states, "this is the day the Lord has made; let us rejoice and be glad in it."  I can't help but rejoice on the good days and I really do feel how good He is every day; but rejoicing doesn't come easy when things are frustrating, painful, and difficult.

But today was finally a better day.  And while last several weeks have been incredibly challenging physically, this describes everything to a 'T': Psalm 42:8 "By day the Lord directs His love, at night His song is with me, a prayer to the God of my life."  He continually upholds me.

I've really been enjoying messages from Louie Giglio.  "How Great is Our God" was exactly what I needed to hear this weekend!  If you get the chance, check it out.  Did you know that the biggest star in the known universe, could fit 378 quadrillion Earths?  Psalm 33:6 says, "by the Word of the Lord the Heavens were made; their starry hosts by the breath of His mouth."  Yeah, my mind was pretty blown too!  I loved all the beautiful photos of space that he posted along with the message, absolutely stunning.  The next day, I watched the one called "Indescribable" and was just as amazed and encouraged.

I'm so amazed that such a massive, star-breathing God (who as Psalm 147 says knows each one by name) would comfort me and bring me peace so constantly!

This is just cool, a beautiful expression of God's grace in all things, as Louie Giglio simply pointed out.
It's at the very center, in the black hole of a whirlpool Galaxy called "The Darling".  It's called the 'X structure'

Thanks Hubble!  If you want to see more of God's creation, browse around the site!  Absolutely beautiful.


-Milly



I know I'm not a terribly frequent blogger, but I am having surgery next Tuesday and may be absent for longer than usual.