Rare diseases have changed everyone’s life in one way or another.
There are over 7000 rare diseases, and only 5% of those have treatments, no not cures, treatments.
That’s all… barely any.. rare diseases in America affect 1 in 10 people, there are more people with rare diseases then Aids and Cancers combined.
All these diseases are horrid.
Rare diseases are more so misdiagnosed with a disease that is not rare. Most of the time it takes year, lots of doctors, test, biopsy, surgeries to just find out whats going on!
Some people stay undiagnosed their whole life.
Some people who have rare diseases die within the first year of their life.
The way I learned about my rare diseases started with in the first year till now. There are things we still don’t know all what’s going on in my body.
We knew my lungs didn’t work well that having a cold at two weeks old wasn’t good. That getting pneumonia every year for the first five years of my life. We knew being able to roll over at five weeks didn’t make sense.
Slowly we learn more and more. Somethings I was diagnosed with where rare others weren’t rare.
The rare diseases are scary because not many know what’s gonna happen, we barely know any disease but we have to keep trying!
Rare needs More Care
Bring awareness is so someone in the future doesn’t die because no one was looking for the rare diseases because they didn’t know they existed
We existed. We care for you. You care about the rare… we will keep living with rare diseases and most will die with rare diseases!
Feeding tube awareness is important. O have a feeding tube. I’ve had them on and off for the past few years.
I have had NJ tubes which go into your nose and to your small intestines and right now I have PEGJ tube which goes into my small intestines.
Every day I wake up and make my feeding tube forumla the kind I use is called real food blends. I put it in a blender with water. I then strain it into a bowl then wash the strainer off and the blender then I strain it into the blender again then I wash the strainer off and bowl off and then strain it back into the bowl and then wash the blender off and strainer and strain it into the blender I then get my feeding tube bags that I use and put the mixed strained real food blends into the bag. I close the bag turn the bag upside down and put my fingers on the blue longer part of the bag and squeeze lightly to get the air out of the bag and then prime the line that will connected to my feeding tube the one that goes into my PEGJ that hangs outside my stomach.
It takes lots of work but I would be doing this even if I was eating. I do this sometimes 3 times a day depending on what my body handles a day.
I don’t like seeing others in pain. I don’t want anyone to ever have a battle in life even through we all do. I don’t want anyone to go through anything like I have. So when life gets scary I want to hold tight to my friends and let them know I’m here.
The thing is I’m not physically close to most of my friends. I see them lose there freedom. And then every time I see God.
I lived in Seaboard a small town with lots of people over 60… a lot of them little old ladies! I loved them all!! As I lived there my papa started taking me with him on his visits to their houses or hospital or nursing home. The longer we were there the more my heart fall in love with going to visit people.
I started riding my bike and going to there house sometimes sitting on the porch talking to them. They were always so kind.
I believe in God, I beleive He knew how to make my life. You can find the lines He put in place for me to be here!
I didn’t have a lot of friends my age but I got good at being pen pals at sitting in waiting rooms with family as they waited for their loved ones. I got good at asking questions so I could keep someone talking. I got good at being around pumps, wires helping cool weird foods and being kind listening and not getting annoyed when someone would tell me the same thing ten times. I felt calm. I learned how people are people no matter what we see. Leo Boone was a man who was paralyzed from the neck down. He was always smiling.
I learned animals are amazing at making people connect sometimes. It’s not that I didn’t already know these things I just learned more about them.
When I was in the hospital even if it was for me or someone else I didn’t mind I had done this before. People always told me I’d make a great nurse I normally told them thank you. Deep down I knew I felt something I needed to be.. and medical was involved.
My friends have health problems, my family does too. I learned and owe more to how God set my life up then any thing I can imagine.
I didn’t want to relay on anyone but truthful I have too. The person I have to relay on that each of us has to relay on is God.
People sometimes act as is you are stronger when you don’t replay on others. And truly it is you are stronger when you relay on others.
You will never be able to find relief without Realizing that it Requires relating on others. Everyone needs to be able to have others relay on them and others to relay on its a balance.
I have had so many different times not be able to get help or to understand what to fear where danger is or was and what to do.
I’ve always been around “different”
Walking alone at night seemed simple no one else was around so I thought it was safer I don’t like seeing a lot of people at once so the quiet of night seemed better.
In 2015 I woke up from a coma and the doctors all said I was faking the seizures that put me in a coma in the first place. I was in a coma. I don’t know how I faked that you never know… I guess but the reason they said it was because I woke up from seizures to fast, I knew to much about seizures comas feeding tubes central lines and medical things. I was seeeking attention they said.
Well I’m autistic I can tell you about a lot of things I don’t even care to know about but I don’t forget facts if I hear it normally I’ll remember random things.
I have a very high level of brain activing going on at all times. I’ve been this way most of my life, I stare off and can answer what you said all the sudden even if I had a seizure but here is why I have high brain activing
I didn’t know I was being so different
During an eeg I had for about 3 days I was shown to be having a 5-30 second seizure every few minutes.. so truly if you think about it I came to fast from a seizures because I’m normally having a seizure so my personality is basically me seizing so my normal is not normal.
I was talking fasting and just kept talking for 40 minutes my dr saw on the eeg I was having a seizure for 40 minutes non stop I was aware but I wasn’t in control.
In June of 2017 I was put into the icu after I had had a mini stroke, I was freaking out crying to my parents not because I had a mini stroke no I was horrified that the hospital was going to let me die. Because I’ve come so close before.
It’s never been easy but it’s never been harder to have doctors nurses medical staff to act like I’m in there way. Like I don’t matter. I fear one day I’ll end up in the ER and the doctors let me die.
Right now I’m not as scared as I use to be. The doctors I have right now have saved me instead of pushing me out the door to another doctor. None of them blamed my autism like many had over and over again. No they all worked hard to figure out what to do. I notice a lot that’s part of my problem it’s what my autism does for me.
My Neuro doctor never once said let’s see if this is autism no he said ok let’s get some Medicines do test do scans it all…
They found more then they knew they would. This year 2017 I have had about 4/5 seizures. I’ve had about five EEGs. A lot of procures and things.
The doctors kept trying and they did a good job.
I have a VNS in my chest which is a device that sends pulse into my brain to help calm my seizures or stop them all together.
I have a feeding tube in my stomach that goes into my small intestines.
A picc line in my arm for Medicines fluids transfusions blood all fun things..
But you know what? None of them took away my autism and that’s ok I know for sure that I took away the doctors power of my autism. It is not what they are allowed to blame. I am autistic. But I also have epilepsy, Ehlers–Danlos syndrome, eosinophilic esophagitis, heart defect, mast cell activation syndrome, MDS a blood disorder, asthma and more…
Feeding tubes come in all shapes and sizes, literally, you have your NJ tubes those go up your nose down your esophagus to your stomach then to your small intestines. You have your GJ tube which goes into your stomach to and into your small intestines.
There are more lots more. It’s amazing how as humans can be feed.
Now don’t get me wrong but I’m not like everyone else with a feeding tube.. I don’t have it for the same reason they do. I don’t use the same foods/drinks or formula they use. There are dozens more reasons why.
But the main reason I’m not like everyone else with a feeding tube is because everyone isn’t the same.
We forget sometimes that millions of feeeding tubes are placed in people’s body.
I don’t know everyone’s story and that’s ok feeding tubes are a hopeful remind to me that there is always something to try and keep us alive.
When it comes to anything in life we aren’t the same. And that’s a good thing.
Be a tubie or at least be nice to a tubie! A tubie is someone who has a feeding tube(s).
Shayweasel 