When Things Turn South

Recently things have really turned south with my health. I hate admitted that it is, but when you get told, “wow you like crap, why aren’t you in the hospital?” No I won’t die from it but it sure does feel like it. 
When you start to have hope that it will be somewhat fixed and then a bomb is dropped. Your new problem is just like the old problem, not easily fixed. Now you got a couple illnesses that are complicated, feels like like I’m in a bad relationship with my body. I’ve been sick for 3 years, almost 4. I am so used of things never being easy or ever going my way. When you finally get a little break and then your bodies like “Nope its not gonna be that easy”. 
Sometimes the emotional part that is the hardest, trying to accept that your really sick. Your life is not gonna be that simple. You start to look at your friends that don’t have a illness and you start to wonder if your life is ever gonna be “illness free”.
Sometimes it feels like its one thing after a another, docs think you are crazy, and you start to think they are right. Fix 1 problem and 2 more appear, like why does that happen? 

Like I said, your in a bad relationship with your body. Relationships are never easy.

It's 2015!

Hello Everyone!

It's been a while since I have written a blog post. I am truly sorry for that, my illness has really taken over my life. After the last post, I had taken a turn for the worst. I never like admitting these things, but sometimes it's good to come to grips with things.
After being admitted into the hospital, I got a little better but was not to my old self (before the problem). I had always had dizziness but it had gotten very bad. I would stand up and almost pass out. Thank goodness, we had a doctor to go to even though it was a genetics doctor, he was really the light at the end of the tunnel. He was not happy on how sick I was, he referred me to a GI doctor at Children's.
That GI doctor ordered a TILT test, before even seeing me. I had gone to do the tilt test and it was very rough. At the end of the test, I had a seizure. It was the most scariest thing, I had in my life. It was confirmed that I had a Autonomic Problem. I was then diagnosed with POTs, a form a dysautonomia. POTS is pretty much when I stand up my blood pressure drops suddenly and my heart rate goes up, causing me to black out or faint. It's a heart condition, most likely caused from my Chiari. These doctors wanted to do more test, including checking my hearing, MRI, stomach test, and many more. They told me it's not gonna be a easy fix, and it will take time to get better!
Yes, I've been very ill but I'm dealing with it! I've got the support of my friends and family!

A week ago, I went to my ear doctor to get my hearing test and it was confirmed that I was deaf in my left ear. He had said, if your hearing comes back it would be a miracle! (There can always be miracles!) He said I would need new hearings aids to help me hear.

I am so not the one, to "ask" for money. But with medicial bills pilling up, it can really get tough!
Please feel free to share my --GOFUNDME-- page!
http://www.gofundme.com/SydneysQuest



Sometimes life gives you the hardest challenges. I know I can defeat this illness!
IF anyone reading this is going through a rough time, know that things will get better! And if they don't, then you will deal with it then, when that happens!
Always stay positive! Hope and Positivity can change everything! 

The Last Week

Update: 

For the most part, I was doing pretty good, these couple last months. Yes, some days I have flare ups, and I cannot do anything.. But until about a week ago, 9/24/2014, I started to feel pretty crappy. My throat, my stomach had been starting to act up.

For a week, it just kept getting worst and worst. 

Yesterday, 9/30/2014, the pain was to high. I wasn't keeping down any medicine, or food. It literally felt like someone was stabbing me in my stomach.

The next stop was the ER. Which I hate and try to avoid until it's the last resort. We went to the ER, they started out with mostly exams, trying to find out whats going on. They gave me IV fluids, morphine and I was still in a lot of pain. They couldn't find out what was going on. The doctor hinted it could be the start of Penidicius, but they weren't 100% sure.
Nausea medicine was not working on me, so they were almost about to admit me. (Which no one likes to stay at the hospital)
After they gave me some more nausea medicine, which gave me a reaction. But after they gave me Benadryl, I finally started to have some relief. The pain was still very high, but I was comfortable. The doctors still asked if I would like to stay, but I told them, right now, I'd rather go home. Later after many hours in the ER, I was at home, feeling tired and ready to go to sleep.

At this moment, they really don't know what is causing this pain. It very well could be a extreme flare up of my IBS, my chiari or something new. I hope it is something that will pass within the next few days. 

I am still not feeling the best. Pain is still very high, but managing with pain meds even if it doesn't take all the pain away. 

I don't ask this very often, but I ask if you could send a positive thought to me or pray for me, so I will not end up in the ER and start to feel better! <3

The Road so Far

Many people would say I am at my best at this point, which is true and false.
A chronic illness doesn't go away over night, or it might never go away. People with chronic illness deal with the days they might be bed ridden and days where they can climb a mountain.
Sick-free days are a such a gift to us. We want to do everything before the problems come back and they are unable to do anything.

Currently, that is what I am dealing with. I am always in constant pain and have learned to block out the pain and cope with it, but at times it can be overbearing and I cannot do anything. Most people don't understand that...
They look at me, see me smiling and assume I am all well now. Which in most cases I am probably in pain, and just trying to deal with it. 

Being sick doesn't mean I have to be the stereotypical sick person. I can still go outside and smile, do things and still have fun, while being sick. Yes at times, my illness prevents me from doing anything and those are the days you don't see me. 

In that case, most people do not understand that. They think, "Well you are sick, so shouldn't you be in bed and eating chicken noodle soup?" 
I am not contagious, or will give you my illness. I can still get the flu or a cough on top of my other illness. 

I also get asked a lot, "How do you still smile after your illness has taken away so much from you?"

At times, I don't smile and get very sad. I wish I never was sick. 

I have learned to embrace my illness and find a happy medium between life and that. Even though I am sick, I am happy. 

I used to always look at other peoples life's and compare them to mine. Which is the worst thing to do at any time, sick or not. 

Yes, I had to give up a lot. I wasn't able to attend high school the way I wanted to, or college that way I had planned. I have a different way of looking at things. I always look at the big picture, I have goals to overcome. It might be at a slower pace then the average person, but I will get them done. 

I ask of people, when someone says they are dealing with an illness. To not judge them, look beyond that smile, the laughter, the goofing around.
Every chronic illness or illness has there challenges. All people have different ways of dealing with it. 

I take one day at time, some days might not be that best, but I am happy about who I am and what life brings me.

Chiari Malformation Awareness Month

September is Chiari Malformation Awareness Month...  
To honor Chiari Malformation, wear purple. Donate, to get the word out!

In hope to spread more awareness, I created a video.
This video features many other people that are affected by this Condition.

(To learn more about Chiari Malformation go to-- http://conquerchiari.org)

Please share this video, in efforts to spread the word about this serious neurological disorder!

INSOMNIA

Most people that have a planned sleep schedule, follow it. Wake up at a scheduled time every morning, go to bed a specific time. But not everyone has the privilege of having that pleasure.

When I was in grade school, my parents would always make me go to bed at 8 o'clock. It was always a schedule. It was a schedule that I would try to not follow but would give in after finally falling asleep.

As a teenager, I would stay up and text. Watch TV, you know be a normal teenager. When my parents would tell me not too. I knew I had to get up at 7 to go to school, but I still did it. I never had a problem with going to sleep if I had to go to bed at a normal time. 

But not until recently,  I have become aware of insomnia. Sleeping was literally my get away land, but now it's become distant. Which has not been pleasant at all. 

Normal people, in which that don't suffer a abnormal sleeping schedule don't understand why you can't fall asleep. Usually there response is.. Go to the doctor, get help, take some pills.... just change your schedule. My most favorite is them accusing me of being on my computer and my generation is addicted and that is why I cannot fall asleep.
But no matter what you do, it's not how you change anything, you will not change how you sleep. 

It's a circle of death as I call it. 

People that have been in the "INSOMNIA" of death. Understand it. But those who have not, do not and never will until they have been affect or someone close does.

Read this article on Chronic Illness on further detail on how it can affect you with sleeping, even if you don't have a chronic illness you might relate to this--http://chroniccurve.tumblr.com/

Graduation

I wanted to update on something, I graduated from high school.
It was really tough, many people thought I wouldn't make it. I missed over two years of school. Didn't attend one day of school in those two years. It was extremely stressful, at times I just wanted to give up and just drop out..
Really, at times I thought I was would never get better. Teachers, family and friends convinced me to stay on the road to continue to school. Really for them I would never have continued to do school.
It was so refreshing to just get school over with, even though I wasn't able to spend it with my class it was just nice to spend a hour with them.
Now I can continue with life and just find the next step of my life.
Even though I got to get better, I have one check-list of life, and don't have to worry about it anymore..

I still got a lot of life to live and have so much more to do.