What do you Miss?

As we move forward, it's ok to think about what was in the past, what you miss about your "former life".  If you haven't already, its important to mourn your losses!  Losing anything very important to you in life, is like any loss. you have to go through the steps of grief.  The same goes for any traumatic experience I find.

I always mourn things as they come, best I can, and they move on (again, best I can!) Sometimes I have to revisit, and feel sad again. But it always gets easier.  It's much better to face what you are sad about than to pretend that it doesn't matter, when it does.

I used to ride horses, and play sports.  I had to work harder at it than others, unknowingly-due to my pain, undiagnosed POTS, and weakness as the years went on: but I was able to do it!
Well I still consider myself an equestrian and dream of riding and horses every day, many times a day; and come to think of it, today I was messing around on the court at my therapy hospital with a basketball in my wheelchair!  There are usually ways around our disabilities: even if its vastly different from our old lives.  I wish I could get out to the barn more, or even try sitting on the horses more, like I used to be able too, but since I can't anymore right now I can dream.  And stay as fit as I can in PT for when I am able to return, so that I can be as strong as I can for whatever goals I may have!

 

I had a good period this summer where I was able to do a little light riding.  Apryl, my partner in crime for about half a dozen years prior, went from a hyper and challenging ride to a gentle and careful stepper.  She knew she couldn't drop me!  I could only walk and slow trot, but I managed to trot her over a log a few times and with taking breaks did way more than I ever imagined. Such a window is long gone, and I can no longer do such things, but I believe it will open again!! This disease does seem to ebb and flow.

Besides, if we don't have dreams, what do we have?
Keep shooting for the moon!
-Milly

Moving Forward

How do you live a normal life with such debilitating conditions?


For me I really struggle with finding ways to find ways to do normal things, since I am so ill and in the hospital almost as much as I am out.  I just cannot do things like go out, and not have repercussions.  I simply cannot cognitively work, or do something day after day at the same level.  I'm fortunate if I get a few hours a week of a good level of function.  I cannot simply apply to a college, and go.  I know this, we (medical support, family, friends) all know this.


But that doesn't mean I can't do anything; I just need to figure out what I can do, when, and how.  One thing I have asked doctor's, not that they have the answer, is "what should I expect of myself?  What is reasonable?"


I wish I could say I am surprised to discover, when I push myself, I can do vastly more than I thought I could.  Especially that, plus not have serious consequences.  Crashes, not having enough energy, feeling as though I'm in a crisis mode, not being able to function...this can happen without me exhausting myself from a big day.  That's what is hard about such diseases.


Now that I've talked about the more gloomy side, what can I do about this?
I believe there are always ways around any situation.  and I CAN still push myself to a point, and find ways to move forward in my world.  I have dreams and hopes just like anybody else.  The same as somebody without a chronic disease or disability.  I want to take online classes, and graduate from college.  I want to make a difference in this world.  But if I never make the normal "steps" that this world expects young adults like me to take, I want to fulfill the purpose God has for me.  We all have a purpose! And THAT is my main goal in this life.  I don't want to miss a single thing He has for me!


What do YOU want to accomplish?
What are YOUR goals?
It's important to make a list - make deadlines and plans.
And don't ever let anybody tell you you can't.
Adapt, overcome. You're not alone!  We have a great community and a great God.


In Him,
Milly


www.dinet.org
www.umdf.org
www.gpact.org

Facing our Fears

One of the things I've really come to hate is accessing my port.  I became septic last September, from TPN and bad IV fluids, and went into shock 3x.  I had a life threatening infection called serratia in my blood.  Since then, using my port has become difficult for me.   I almost cried the first time I simply had to flush it!  All that is much easier now, but accessing is still a point of stress for me.

Today was my day to reaccess.  I have not been feeling well. and since I didn't have any IV fluids yesterday I was especially not well.  my blood sugar was jumping last night, and went as low as 52, so that was helping me feel shiny this AM either!

But as every week, I knew I just had to do it.  I did the things that make me feel as well as I could, and then set up and went through the process of accessing.  as I was washing my hands before beginning, I realized I wanted to for the first time in a long time.  I used to really not mind, and in that moment I felt lway more at peace about it.

God wants to give us strength in our fears - but sometimes He lets us go through a period of maybe having a hard time with something to learn to rely on Him.  I knew I couldn't access my port alone, I needed Him to help me wade through this difficult medical procedure with my weak hands and tired eyes, more than I realized it before as I'd gotten so comfortable with it.  Sepsis shook things up in my life.  Made me realize what was important all over again.  Made me want to really live, and made me feel more alive.

Each time I slide that huber needle into the hub of my port I am taking away some of the devil's strength, as he wants to grip me with fear and take me down!  But I can't let him, and neither can you.

What are some things you're afraid of?
I used to be terrified of dying, of doing medical procedures awake, of severe pain, of not being able to do the things I love.

I've almost died more than once, I've had scopes and tubes and needles stuck every which way while I was awake because of my dysmotility issues meaning no narcotics and anesthesia, and I can't do a lot of the things I used too.  but because God has walked me through them, they're no longer terrifying.  Do they upset me? sure! Do they bother me? definitely! I'm human.  But He doesn't let them terrify me.  Anytime I feel gripped with fear I just pray, cast my anxieties on Him, and as His word PROMISES He takes them away.

1 Peter 5:7 Cast all your anxiety on him because he cares for you. http://bible.cc/

Who Will Hear Us?

I found this in www.bellaflorablog.blogspot.com 

This is an except from the journal article Postural tachycardia syndrome and anxiety disorders  (by Svetlana Blitshteyn, Clinical Assistant Professor of Neurology, State University of New York at Buffalo School of Medicine and Biomedical Sciences):
"The results of the study demonstrate that patients with POTS do not have an increased prevalence of anxiety disorders compared to general population, thereby challenging a common misconception that patients with POTS are more likely to have anxiety disorders. The study by Raj et al. is in agreement with two other studies that differentiated POTS from anxiety disorders. One study showed that excessive heart rate response during a tilt table test was not due to anxiety (2), and another one demonstrated that symptoms of POTS were phenomenologically different and clinically distinguishable from panic disorder symptoms (3). Taken together, the three studies provide evidence against a hypothesis that POTS and anxiety disorders are linked either by association or causation. "

It makes me ask: when will doctors hear us as a whole?
When will be stop being forced to fly across the country to find the good ones, left with nobody at home to manage things?
When will ER trips stop becoming sources of severe fear?
When will this end?

The author in another entry spoke of how she almost died of a blood clot from her PICC because the doctors said her chest pain was ANXIETY.

One night, I went into septic shock for the third time.
I didn't know it.
All I knew is that something was really wrong.  And I really wanted help.
But I almost didn't hit my call bell, because I was afraid that they'd say nothing was wrong and that they'd literally yell at me to "stop it, stop shaking, stop whatever, you're fine."
Of course they didn't, it was mass chaos as they worked frantically to save my life.

I've had so many wonderful, AWESOME drs. Dr's I've called awesome by name. Dr's I've called by first name, Dr's who have kept me going.  and they heal me slowly from those bad ones who hurt me and cut me deeply and make it really hard to trust.

Those ones have no idea how much they take away.
and I really wish they knew.
I speak out because I have heard my story spoken so many times, by others.

POTS, dysautonomia, mitochondrial disease, ME, gastroparesis, Digestive tract paralysis, chronic fatigue syndrome, lupus, TM, MS, I could go on and on. These are all real and there is no excuse for pushing a patient away because a physician does not understand.  It's ok, in my book, to hear from a doctor "I don't know."  The doctor's I respect the most say that to me all the time!  And that's ok!  I know they're working on it, maybe one day they'll know more.  It takes a brave person to say they don't know everything.  Nobody can.

So docs out there who are willing to try hard, find answers that you can, and help us reach doctors that can help us better (its ok to fly all across the country when thats the case!) Thank you.  May the residents and med students and interns under you learn from that, and those working with you see and take something from what you are doing.  I thank my God for you every day!

Milly

Intro

I created this so I'd have a account for GPACT, but will be posting updates on my health and my life for anybody who feels like reading!

A few things about me:
Doctors believe I have a mitochondrial disease or dysfunction, causing my POTS, dysautonomia, strokelike episodes, gastroparesis, small bowel dysmotility, joint hypermobility syndrome, and a few other odds and ends.

My Jesus leads me through every hard time and struggle, from minor things to life threatening infection.  He is truly my Shepherd!

I love horses and rode for years, same goes for the piano and music in general. I often have KLOVE or a playlist going!

Friends are very important to me, and I use skype a lot to stay in touch!

I hope to start college by fall of this year.
Oh and I'm 20 years old!

Love,
Milly