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. 

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. 

My Trip to Germany and Austria

In June 2012, right before I got sick I was able to go on trip of a lifetime. Germany and Austria with my Oma. It was so beautiful, and amazing. We traveled from Frankfurt to Vienna.
I am from a german heritage so the beer and food was nothing new but it was great seeing the environment like that. Beer there was much more bitter and strong. So was the coffee.

We went to Munich where the famous, oktoberfest is, and it was crazy. We even went to a beer garden and I got a liter of beer (it's a lot of beer!) Even when it wasn't the festival, people celebrated. I loved it! It would be so fun to go when it is oktoberfest. 

The landscape in germany and austria is very much like Wisconsin. Very green and hilly. But it's so beautiful. 

My favorite place by far was Innsbruck. It was a beautiful town that was in between mountains. It was dream since I was young to go to germany and austria with my Oma.

 I am so happy I was given the opportunity to go on this trip. (Thank you Oma and Opa for this!) Especially before I got sick, and it was right in time. I would have hated it if I had to cancel this trip because of my illness. But fate was on my side.
It's 2014, I hope soon I can get my health back and do little or big adventures like this.
Cross our fingers!

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. 

In the Past Weeks

The last couple weeks have been pretty tough for me. Been through lots of testing..
(That's why the blog has been on hold, sorry)
Pain has been high and been worst then usual. Like usual, some days are better than others.
My mom and dad have been helping through these last couple weeks, so thankful!!
On the doctors side--
Still no word of what is wrong with me. Doctors are dumbfounded. My neurologist, thought maybe my problems could be from increased CSF pressure, after I had a night in the ER from intense pain. So we went ahead and did a spinal tap. The test came back all good. We went back to my neurosurgeon who did my surgery and he said everything looked good. He said it's most likely something in the brain, and will be a complicated case.
My neurologist mentioned in my first appointment I could have MS (they found some spots on my MRI weren't alarming but unspecified), but it be very rare. We used the fluid (from spinal tap) and blood, a vision evoked test and tested me for possible MS.
We got the call during the week that I did not have MS, which was a relief, but was also sad. We now have no lead.. No doctor knows what's wrong with me.
All I can say, the brain is one mystery.

Dealing with Bad News

In the past year and half, I've dealt with a lot of bad news. School, Health, dreams and just in normal stuff in life. Having a illness can cause you have a lot bad news. It can make things very hard, and make things seem like it's the end of the world. That's why it's important to have a great support system.

I was just given very bad news, news I was hoping to change my health. I was denied to the Mayoclinic. They didn't find me a good fit for their program, they wouldn't be any help to me. It really broke my parents heart, and mine. We have been planning for months to go there, hoping they would find a way to help me. We've been so frustrated, no one can help us.

At the moment I was told, I felt like it was the end of world. But you know, for the last year I've been telling myself, everything happens for a reason. Even though, I wish I could get better yesterday. Sometimes you just gotta keep searching and the day will come.
The mayoclinic was a disappointment to us, but we will find a doctor. 

Having Hope

Many people ask me how I stay positive and how I keep going. The answer is Hope, faith, belief. Just always have hope. My friends, family, just people that support me, that's who keep me going everyday. When a day is really bad, you can't just look at the negative. I always believe I will get better one day. Hope. It's what everyone needs in a bad situation.

Eye exam and another MRI

Had another eye exam again today to determine if my eye sight is being caused by my inner eye. Which is not, thankfully. My doctor isn't sure what is causing my eye problems but everything points to Chiari. My right eye is affected, and get blurry I'm active and just at random times. But the eye sight is impaired.

She doesn't think it's brain related like a tumor or anything, but maybe a nerve is being pushed. So, she ordered an MRI, sometime soon I will be having my 14th or 15th MRI of my brain, I loose count.

Not really a fan of MRIs but if it shows something and we get answers, I'm all for it! 

Hoping for the best! <3 

Mayoclinic Papers Sent

Well, first blog.
Really not sure how to use this, but I will figure this out. My mom and dad sent out the papers to the mayoclinic last week. We should be getting a call either at the end of this week or next week.
Hopefully I will get in maybe in March! They said they were booked until april but I'm not waiting that long! SO I hope I do get in around March. I want to get better as soon as possible!
<3

-Sydney