Update

I apologize for the fact that I haven't posted in 12 days!!!! I also want to share a quick update.

Last time I posted was before Father's Day.  Here is what has been going on.

For Dad's Day, my family and I went out to eat for brunch, when not more than 10 minutes in, I became tachy (extremely fast heart rate) sweaty, and nauseous.  When our waitress was taking our drink orders, I blacked out.  My dad had to help me into the car and take me home before he was even able to order his food.  That was the first time I had gotten that sick out in public since my new diagnosis.  The next few days were even worse.  I somehow was able to get through my morning job and barely make the drive home before blacking out; this continued all week long.
The weekend rolled around and I was determined to make it to Michigan, and because I am an incredibly stubborn person, I pushed myself beyond my limits and my body did not respect me for that choice.  I was able to make it through the fundraiser with moderate nausea and some lightheadedness.  This week has been pretty hard due to lack of sleep and the flare I instigated; flares always throw my reality right in my face, "YOU ARE SICK. ha.ha.ha. and don't you forget it."

But, there is a light at the end of the tunnel of crappy doctors.  After an endless fight and long search, I have decided to return to one of my old GIs and return to his plan of action. I also am FINALLY leaving my horrid PCP for a new doctor. I have heard great things and am very hopeful that he can help me out a bit.  I saw my nutritionist today and have reverted back to a full liquid diet (which is actually fun with my new juicer) Next month I have my neuro follow up to discuss more aggressive treatments such as blood pressure medications and beta-blockers.

That's it for now friends! As always, I am always up for blog post suggestions.

Stay happy. Stay healthy.

Stress

Stress is NOT my friend.

Well, I guess stress doesn't really have any friends...however, it does have enemies; me being its very biggest.

As I am sure everyone knows, stress can jump start a lot of illnesses while making pre-existing ones more severe.  Those of you who know my story, know that my illness came to a head at the beginning of my senior year; when I was over-the-top anxious about applying to college and struggling to hold down a job.  Not only did this stress exacerbate my GP causing me to vomit 50 plus times a day, it also gave me a short fuse which caused me to have a bad attitude about everything; I was a very difficult person to be around.  

Through the last several months, I have found ways to stay fairly stress free.  These include: enough sleep and not working (or working a flexible, part-time job); as well as the right mixture of happy meds, varying calming techniques such as yoga and hanging out with Remi, and learning how to communicate when enough is enough. 

I make sure I go to bed at a reasonable time. Sleep is so important. When I was in the hospital for months on end, I would stay awake for up to 60 hours straight. Sleeping on a schedule has made a HUGE difference. As long as I get at least 10 hours of sleep (I know it sounds like a lot) I can function like a semi-normal human being. (come to think of it, that is probably why I have felt worse than usual the past few days.. I haven't slept well in over two weeks)

I miss working, I really do. I miss making a difference and teaching kids why I loved gymnastics. The reality is, I just cannot go back to a job that demanding. I have had to find other ways to make money and be happy, like my puppy, Remi!  She has made a huge difference in the way I feel.  Although she can't heal me physically, playing with her reduces my stress and really effects my mental health in a positive way; she is the biggest blessing in my life. (even when she eats my hair and begs me to play ball)

This doesn't mean I am stress free. I have just really had to learn how to cope with the daily stresses of life and learn to avoid the unnecessary stuff. 

Learning how to say "no" is a big part of stress reduction. I am famous for piling too much on my plate too soon. This has been one of the hardest lessons to learn. I can't help everybody every time.

This is extremely important to me because my body is extremely sensitive to stress; it's actually quite ridiculous.  Just today, I was trying to organize some photos and put the correct dates and ages on each one and it just seemed to never end.  Less than an hour later, I was suffering from a migraine, unrelenting nausea and vomiting, and dizziness. 

As a quick "heads up," I will probably not continue to do as many blog entries as I am at the moment because my part time job begins next week.  Also, make sure to be looking out for a detailed health update coming up in the future! 

Me and God

Let me start by saying that I think faith is a completely beautiful and independent thing.  I am not here to hark on you or the God you believe in; but if you were to ask me if I believed my God would heal me, I would say no. 

Let's get this straight; I am not religious: I have a relationship with God.

I believe in God.

I love God, but I will not confine that love to a list of rules and regulations. 

I believe He is all powerful and can do awe inspiring things.  He can heal but I don't believe He will heal me.  

Why would He when I can do so much more to honor Him with my disease than I could without? People ask me how can I believe in a God who creates so much sickness and death.  Easy. My spirit is eternal. Your spirit is eternal. Even if you don't believe in life after death, you can't deny the fact that some part of you will live on in some part of someone you touched when you are gone. Once you are here and have touched the earth and the souls of the earth, you cannot be erased. 

That's all I want to do here; change someone's perspective, maybe even change their life. I believe I can do that with my words and my actions and I believe this health struggle will help me to achieve that goal. 

Yes, I thank God for my life and I even thank Him for my hardships, but I do not thank Him for where I am now. I put myself here, He paved the way and laid out the options, but I made the choices that brought me right where I am. I made the choice to do everything I can to better myself physically and mentally. 

I'm Done Fighting

I have decided not to fight anymore.

http://letsfeelbetter.com/five-ways-youre-not-living-with-chronic-illness/

The moment I was diagnosed, I made the decision to fight. It was a great decision at the time and that positivity has gotten me much further than I ever believed possible.  I simply wasn't going to accept anything less than what I knew I deserved.  Today I came across the above article and it got me to thinking how utterly exhausting it has been to fight every second of every day.  It has been a continuous, bloody war against my selfish mind, failing body, unfortunate diagnosis, and all the arrogant doctors.  Reading this article I was both surprised and unnerved by my answers.  I have come so far in these past 20 months but I still have a long way to go.  I no longer want to be alive with gastroparesis and dysautonomia, I want to live with them. 

1. You’re Not Living with a Chronic Illness if You’re Hunting For the “Why” Full Time

I have struggled deeply with this.  Being labeled "idiopathic" is hard for anyone, much less me; a factually minded and medically obsessed “Curious George.” When I was first diagnosed I spent hours researching possible causes.  Here's what I have narrowed it down to: either this GP is from my terrible eating habits as a child, is genetic, is from a major head injury that occurred 7 years ago, or is post viral.  Here's the problem: none of these can be proven, so I am left to speculate.  As I have learned, all things get easier with time and this is no exception.  While every now and then I will come across something that sparks my interest and makes me think "hmm...maybe..?" I have backed off quite a bit and have learned how to accept and live with the unknown.

2. You Are Not Living with Chronic Illness If You’re Not Working

I honestly thought I'd never work a real job again.  When I was still feeding tube dependent, I was a nanny.  That was not a good time or a good job for me to be working as it required an insane amount energy.  My next nannying job was much more entertaining; I loved the kids and it made it so much easier to go to "work" every day knowing I  would get to hang out with my favorite munchkins.  However, kids take a lot out of you and I still did not have a lot to give.  As time has gone on, I have gotten stronger and am planning on yet another nannying job this summer.  When I am not working a scheduled time with the sweet Laura-Grace, I am helping out here and there at church for a few extra bucks.  The cash has been helpful for doctors and medications, but what working has really done for me is give me back a sense of pride; a sense of "I can do anything."

3. You’re Not Living with Chronic Illness if You’re Hating Yourself

I don't know if you could say I ever hated myself. I have hated my situation, I've hated my disease, my doctors, my life; but not myself. I think deep down I have always known that I did nothing to deserve this, and it isn't who I am; it is just something that has happened to me.

4. You’re Not Living with Chronic Illness if You’re “Fighting” It

Now here's where it gets tricky.  For the longest time I believed fighting was the way to go.  Fight to stay positive, fight to get better, fight to be happier; when in reality, fighting makes your sicker and sadder. I will say this: I fought like hell when I needed to.  When I was in desperate need of a little weight, I fought to gain it.  I fought for the attention of my doctors and for the right to be treated with respect.  I have also fought food every day. My mind wants this but my body knows that it is a bad idea.  I like how the author above compares chronic illness to a cancer fight.  Don't get me wrong, cancer is a truly horrible and ugly thing, but if you can fight, you may win.  If you fight chronic illness, you will not only lose the battle, you will lose yourself. It is insane to try to fight a battle that will never end. I am still working on this one but from this moment on, I plan to cope with and manage my disorders, not fight tooth and nail against them.

5. You’re Not Living with Chronic Illness if You Are Not Moving

Lastly, let’s talk about movement.  I have made some headway on this one. For one, I have physically started moving again.  While I am no where near where I used to be or where I want to be concerning my fitness level, I can now walk around the block, run a few slow miles, and lift weights.  This is huge progress compared to the one flight of stairs a day I could handle only a few months ago.  As for metaphorical moving, I have done a lot of that as well.  Most of my friends and family have seen and commented on my extreme spiritual and personal growth.  I have become a new person.  I see the world in a different way and the things that would have gotten under my skin two years ago, don’t hold a candle to the things that can bother me now.  It takes a lot to shake me.  I have become fiercely independent and have grown more in these last two years than anyone I have ever known.

My Mental Health

I am always hearing people say "how do you keep it together?" and  "how are you so strong through all of this?"

Let me let you in on a little secret...I'm not.

I have breakdowns where I just lay in bed and cry about my situation.  I cry about lost friends.  I cry about the rumors.  I cry about the pain and the medications and the tests and the doctors. I cry about not being able to hold down a job. I cry about not being able to go to school, but mostly I cry because I let all these things get to me and that makes me feel weak.

Here's what I have learned.  You can't change your situation, but you can make the best of it.  The people that left you at your darkest hours are not worth your tears.  Pain, medications, tests, and doctors are my life now and I have to accept that.  There will always be an opportunity somewhere, somehow, to make a little money.  I will graduate from college, no matter how many extra steps I have to take.

Most importantly I've learned that the person who doesn't cry is not the strongest. The strongest person is the one who lets things hit them emotionally, then gets back up refreshed and ready to move on.  Its okay to be sad for a little while. Its not okay to be sad forever. 

Chronically Strong

It has come to my attention that I have started this blog on chronic illness, but I have yet to name and explain what I suffer with. For those who don't know,  I suffer from severe gastroparesis and debilitating dysautonomia along with a number of other not-so-major conditions.   

In short, gastroparesis is the paralysis of the stomach muscles resulting in the inability to digest food.  

For some, the immobility is slight, and their quality of life is not severely affected.  For those of us lucky enough to get that short end of the straw, this condition can lead to major life adjustments such as feeding tubes and TPN.  For those who fail to properly manage their gastroparesis, it can be fatal.  I have been through the ringer with this condition.  After trying out a new management diet and dropping 20 pounds, I was placed on an NG tube.  (nasal gastric: meaning it goes through the nose and into the stomach)  After that failed, I was placed on a PICC line (central catheter) to receive TPN or total nutrition.  After about a week, they scheduled me for surgery to have a GJ tube placed. (gastric jejunal: meaning one port goes in the stomach and the other in the intestine)  After that surgery, the tube never worked properly.  It had developed a hole which required another surgery.  The intestinal portion then flipped back into my stomach and required another surgery. Then that happened again.  So they decided to take the J portion out.  When they took out my gall bladder a few weeks later, they also placed a surgical J tube which fed straight into my intestines bypassing the stomach completely.  This tube was so horribly painful that I asked for it to be removed.  They did everything they could to try to make it less painful, but in the end I couldn't handle it and they had it removed.  So back on the TPN I went.  While on TPN, I received a Pyloroplasty. During this surgery, they cut and sewed open the valve at the bottom of the stomach to help allow drainage of food into my intestines. This was my miracle. When I was up to 94 pounds, I decided, against doctors advice, to come off the TPN and stay on a liquid diet.  It was incredibly difficult and painful but I am proud to say I am managing well and am holding steady at 107 pounds.  

Dysautonomia is a little more foreign to me. It is an umbrella term for all conditions affecting the Autonomic Nervous System's ability to function.  The ANS regulates involuntary processes such as digestion, heart rate, blood pressure, perspiration, and respiratory rate.  For me, I will be stable as I stand up.  Then after 15 minutes of standing, you are lucky if I'm not on the floor and completely unconscious.  This disease has sometimes left me bedridden.  There is no cure and the only management is high fluid and salt intake.  I am doing what I can with it at the moment, but it looks like I may need to go on a heart medication in the future.  

There are a lot of people out there who have it way worse than me and I feel for them every second.  Awareness is so important and is key to finding a cure for these debilitating illnesses. My only hope is that I can find some way to help others, and myself, learn to not only live with, but live despite our conditions. 

Let's Talk About Spoons

I'm not feeling so hot today. I can barley stand up without blacking out. Also, nothing has stayed down today, so I decided to hit the blog. 
Let's talk about spoons.

 I bet you're thinking "Seriously? Spoons?"

Normally, spoons are what you'd use to eat all the Rocky Road in one sitting or the musical instrument that allows you annoy the socks off your mother while you slurp that last sip of chicken noodle soup.  Well, what if I told you you had 6 spoons to get through today and you had to think long and hard about how you would use each spoon?

The spoon theory is the idea that all chronic illness fighters start the day with a set number of spoons. Sometimes you may be blessed enough to have 7, or maybe you just have 2; whatever your number, you better use them wisely.

"The Spoon Theory" was created by a chronic Lupus fighter. The way she explains things is, a chronic illness fighter, aka "a spoonie", wakes up in the morning with a certain amount of spoons. What would require little, to no spoons for a healthy person, can take multiple spoons from a person at war with their own body.  For example, say my healthy friend Claire were to wake up, brush her teeth, shower, make and eat breakfast, and walk to school as her morning routine. This would probably use up 1 whole spoon for Claire, or maybe even none; but for me, or for another spoonie, each task can use up multiple spoons.

For me personally, it takes several spoons to shower.  Once I have used those spoons, I must nap in order to gain another one. My overactive mind and my ill body are constantly at war over what spoons should be used and when.

If I were to make myself breakfast, it would take a spoon or two to get the ingredients out and cook it.  Although eating could potentially gain me another spoon, I have to choose wisely because I still need a spoon to clean up.

Essentially, spoons are energy: what I can accomplish in a given time frame.

Purple What?

I have to be honest, I didn't completely come up with this idea on my own.  A fellow spoonie has a blog similarly titled. In many cultures, the tiger has been a symbol of strength and courage. Tigers represent fearlessness in the face of great obstacles. They are a flawless representation of the courage that lies within each of us.The color purple represents passion and love. To be who you are despite your illness requires a lot of love. Passion for your cause, passion for your fellow sufferers, and a whole lot of self love. So wear purple to honor those who have lost their fights. Wear purple for yourself. Wear purple for your loved ones. Wear purple for all of those who are suffering.  Those who battle chronic illnesses live their lives moment to moment trying to stay positive and keep their heads above water.  Many people take for granted the life they live.  Chronic warriors learn to appreciate the days where medications are minimal and ER trips are days apart. We know how to live in the moment and take each punch as it's thrown because that's how life is for us. Most chronic illness fighters are born with an immense inner strength that is honed by the storm they weather daily.  They are kept alive with this brilliant courage that allows them to step through every situation fearlessly.
"Courage doesn't always roar. Sometimes courage is the little voice at the end of the day that says 'I'll try again tomorrow.'" ~Mary Anne Rachmacher