Unexpected Surgery

Funny story, on Thursday April 16th, I began to have severe pain on my right side below my rib, just over night. It was a pain that I have never experienced before and with all my other pain, it put me over the edge.
My mom then took me to the Urgent care, which I thought I had gotten a severe cold from my dad because of my low immune system.

Turned out to be my Gallbladder (didn't think of that happening), and then was transferred to Froedtert Hospital ER to be admitted to get my gallbladder removed. The surgical team was so surprised on how quickly I had produced stones, given I had ultrasounds in November of 2014, which showed no sign of gallstones. During this process, I was in such severe pain, I was given pain meds and then the surgical team came to talk over the whole surgery and there I signed my life away. It was considered "Emergency Gallbladder Surgery" because usually it is done out patient and not done by a trauma surgeon or the way I had it done. After that, I was admitted into the hospital and to my room to have surgery the next day on Friday.


Friday came and we waited all day for the surgery to happen, around 12 I was taken to the pre-op room. At that point I was in such pain, I couldn't explain how bad it was, they had to remove my last IV cause it blew. My IV's were blowing out in a hour, which is so normal with me, so I didn't receive pain meds for over 2 hours.
Then the team came in for the surgery, and had to put a new IV in. The anesthesiologist took one look at my arm and stormed out of the room. He was livid, my veins where shot. It took 2 more anesthesiologist and over 2 hours to find a vein, which postponed my surgery. (Which pokes don't bother me anymore since I have them all the time) 
They finally got a vein, and I was then was quickly transferred to OR for surgery. Usually I only have 1 anesthesiologist, but because of my POTs and it's considered a heart problem they have to have extra people on hand.

Then most of you know what happens after, I woke up in recovery and then was taken back to my room. Surgery went great! One less organ! I then spent the night.
The next couple days were rough, most people recover more easily but with all my other health issues it was tough. They kept me Saturday and I was sent home Sunday.

So far, the surgery has really messed up my whole body. But it's been almost 2 weeks since surgery and finally getting back to my normal self.
My family was hoping maybe my gallbladder was causing some of my stomach problems, but unfortunately, I have seen no improvement. Which is disappointing but I was not expecting any miracles. 

I wanted to not sugar coat things, like I usually do. These past couple of months have been very crazy. With the support of family and friends, I will always get through it and I want to thank everyone who has prayed and been there for me! :)

Just another day, getting things done and trying to get back to recovery for my health.



To learn more about my other conditions: http://sydneysquest.blogspot.com/p/learn-more.html

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/

My Mom

Today is Mother's day, and it's a day to recognize mothers for the great things they have done in our lives. My mom been beyond what she was expected to be, and faced challenges that no mother should ever have too.
No mother wants to hear that their kid is sick. It's something they can help but sometimes cannot fix which kills them.
When I began to get sick my mom thought it was something little, we went to doctors and they didn't know what was wrong. Test and test were done. Then we were finally were gave the news, an incurable condition. Treatment, drugs-- What a mother never wants to hear.
But my mother said it was gonna be okay, we would deal with anything that came our way and we did. She stood by my side and never left it.

With every procedure, she was there. Every MRI, she waited in the waiting room. Every ER visit, she told me the pain would get better. And with every picture taken, there is a person behind it. My mother.
My Mother is someone who has been there for everything. She has been amazing!
Happy Mothers day Mom! Love you so much. 

Looking back

Looking back, almost two years has been hard. I've lost a lot, and sometimes it does really bother me. Family and friends really do help bring happiness but they will never bring that the two I lost to being sick.
I've lost 2 years of high school, my junior and senior. Many students say, 'WOW, that awesome. It must be cool to not have to go to school'. Well, sometimes it is, but most of the time I miss it. I miss my friends and not having the memories like everyone else has. I am not experiencing high school like most teenagers do, and the most precious, fun year.. Senior year.

Continuing, it has put a drag on my college, I used to know where I wanted to go and had everything planned. Now, I really don't know what I wanna do.
I see everyone else planning for college, of coarse I can apply. But what does me good when I might be ill and I would just be throwing money at a college that would gladly take my money.

One thing I am proud of, is that I am going to graduate. That's one thing my sickness will never take away.
A life lesson, one month I was planning to go to school and be a normal high school student. Have no problems and just live life. But everything changed..
Time is precious, use it wisely.
Everything can change in second, don't think you're invincible.