Long story short

It has been quite awhile since I last posted. Really I have barely been online at all. It has been quite a month or so with dysautonomia. The new doctor, Dr. Good, has changed my beta blockers and put me on mestonin. There are no major differences in my symptoms other than the first week or two I felt like I had the stomach flu. Talk about deep cleaning. Like with any chronically ill person I have been going through difficulties with my insurance, fighting over what is and is not covered and what is and is not medically necessary. Let's just say between the hours of phone calls and the multiple faxes and phone calls to even start getting my case looked at, insurance companies are not exactly friendly with me anymore. Social security is no better. They give you something like 300 dollars a month and expect you to live on that. Yeah right. Oh but then if you have no other income like me you get what they call SSI supplement security income. This is about another three hundred a month I you meet all of the needs as in pay for your own food. Don't really own anything of value. Pay for your housing. Ect. Then once you are on it they will use any excuse to try to take away either part of some of it depending on their excuse. Oh you got thirty bucks from a relative, that will come out of your pay next month. What? Really? If you want to get ahold of them you might as well rent a light show because it is no use. Hours on hold. Message left. Letters sent. Nothing. If they want to get ahold of you, now that's a whole different story. They send you a letter and within ten days or them writing it you need to either show up to their office or call them otherwise they take away your money for up ti six months. Great so now I have anxiety to try to even get ahold of them. Oh our wonderful system. Doctors. No use. They don't even know what to do. So now here we are, teaching ourselves through good old trial and error. New medicines: 2 New allergies: 2 New side effects: 4 New best friend: chocolate soy milk

The Mystery Disease Chick

Let me just say Thank God I am back home. I felt like I was in lock down as a science experiment in that hospital. Luckily they finally realized I know what I am talking about and they even had interns and medical students coming into my room to ask questions about Dysautonomia. People were even taking notes. I felt a little bit like a professor. The tests all came back and a group of doctors came in and informed me that I was correct it is a flaw in my ANS. Shocking. After four days in the hosptial, normally someone would start feeling better. Well Dysautonomia is not like any other disorder, it always wants to rebel. They gave me medicine that made the room spin, and lowered my blood pressure and potassium levels that were perfectly fine up until the second day there. Take that hospital, you don't even know what to do for me on a normal day, so I convinced them after the MRI EEG and EKG that they were making me worse and I could do a better job. After explaining to them how each of their treatment methods were wrong, there jaws dropped slightly and I told them I would like to be discharged so that I can nurse myself back to health. They surprisingly agreed released me from the alarmed beds. So I left concious yet dizzy from low blood pressure and this is what I ran over with my nutritionist and informed informed the staff of different treatments. Dizziness when BP is fine and HR is below 100 (usually mine is about 130)-take half of my current dose of beta blocker until HR balances out again. BP low- pickle juice shots Potassium low from excess urination, flushing with fluids, and florinef- Bananas or something potassium enriched Fidget a lot to keep from getting blood clots and to keep blood circulating Lots of protein, veggies and fruit. Keep drinking the gatorade and powerades Do mild exercises such as yoga and stretching to keep up strength and keep your body fit Never stop researching and take a stand- no one is going to care more about your health and wellness than you. YOU need to stand up and take part in your treatment. Make sure to ask about everything they are doing and don't be afraid to speak up. You are the expert when it comes to your own body. Keep tabs on your vitals and health as much as possible. In order to control your health you need to know how it is working. I hope all is well and all those suffering are in my prayers. Keep fighting the good fight and remember we are here to help each other.

Good Morning

Chug down some pills and a gatorade, it's a new day. Get up slowly and have a nice cup of decaf soy coffee....silk creamer is my new best friend. Let's step up and do something today. Make the world a little bit better. Make a new friend. Call your grandma. Invite a neighbor in for lemonade. Play a video game with the kids. Draw a picture. Take a few minutes out of your day and show someone you love that you love and appreciate them.

To All of You Out There Suffering

I just want to tell you that you are strong. More than many out there realize. Throughout the pain and exhaustion. Nausea and vomiting. Passing out and migranes. You keep pushing through. All the sufferin makes you stronger. Just remember to keep fighting. I know sometimes it feels like we are all guinea pigs to the medical world. Poked and tested. Popping pills and er visits but we still keep going with smiles on our faces hoping one day it will all be worth it. One day the world will hear or plea. Dysautonomia will be known and a cure will be found. Until then keep your chins high and remember we are all here for a reason. Don't give up on yours.

Faith vs. Denial

Let me just say I am all for faith. I pray everyday for the protection of those I love and that good days will come to those of us suffering. However one thing I am not for is denial. I live in a realistic way. I know I am sick and I know the approximate prognosis for me at this time. I do not live in a fantasy world and believe that one day I will just wake up and be fine. I keep with treatments and know how to handle myself. I do not consider this to be negative. I have just been disappointed an have come to realize that you cannot always expect a miracle. They come. I believe whole heartidly that there are miracles everywhere but I do not think if I live in denial I will feel better. I came out long ago so I would not have to live a lie and I refuse to pretend I am healthy as well. I have my good days and bad days like everyone else. So for me. Please do not tell me I am not sick. That I can be saved. I respect that you are trying to help but trust me. I research. I pray. I am looking for a cure. Thank you.

Sneaky sneaky

With my years as a dysie...sort for dysautonomic...I have learned a few tricks Number one: SLOW DOWN. If you try to rush yourself you will burn out. Then your whole day will be screwed. Number two: Hydrate. Very big factor. Raise blood volume. Cools you down and helps with nausea. I consider this a must. Number three: Snacks. We really do need to eat all the time. Whether your on a special high salt no dairy diet like me or if you are gluten free, we all need frequent small meals to keep going. Number four: Don't be afraid to ask for help. We already have enough to worry about. If you need help just ask. Everyone needs a hand now and again and it is always better than knocking yourself out to keep your pride. Trust me it is not worth it. Number 5: Figure out what works for you. We are all guinea pigs in treatments but who knows our bodies better than us? Keep notes of days you feel better and worse. Did you do something different? Eat too many glutens? Number six: Find an outlet. No matter if it is venting to fellow dysies, writing in a diary, drawing or whatever relieves the stress for you, you need a way to calm down and distract yourself from the stresses of life. Now more importantly you need to say positive and make sure to smile and laugh whenever possible. It can be rough sometimes but remember you are not alone. We are all here to help each otter and good days will come.

Hello. I am Kristen and I am excited

Alright World Here I Come In a random act of enthusiasm...very likely to due with the very little sleep I have been getting, I have started to build up a set of goals for myself. Goal number one: Finish writing and editing a story. Goal number two: Teach self graphic design. Goal number three: Attempt to publish at least a short story. I know I may not reach these goals as soon as I may have been able to before but as long as I keep striding towards them I see it as progress. Keep moving forward and don't give up on yourself. Remember everything happens for a reason.

Night OWL

It's just past two in the morning- woken up by heart racing and dry heaves.

Flu perhaps? Maybe something you ate?

WRONG!

It's just good old Dysautonomia for it's weekly round of random vomiting brought on by you guessed it---absolutely nothing. lol.

There is something very interesting about this disease I have fortaken. It is unpredictable and just outright bizare.

You see the Autonomic Nervous System makes up of all the different "unconcious" functions such as breathing, digestion and heart beat. From when you sweat, shiver, blush, down to just knowing how to digest and breathe at a normal level.

It can go from just causing a few passing out episodes every now and again-like back when I was 14. To totally disabling you and slowly taking away everything you once knew.

However there is a brighter side to this dibilitating disease.

I have talked to and learned from many wonderful people also suffering from my condition.

From lawyers to models-anyone can be taken for this rollercoaster ride.

Yet...

We keep our spirits high-take whatever we can and learn such a deep patience and true appreciation for the small things in life.

Don't take for granted every moment that makes you smile or laugh. Every moment means something. Every second matters. You never know what is going to happen tomorrow.

Get your work done early. Then go out and enjoy everything you have-no matter how big or small you make think it is, appreciate it for all it is worth.

So for all of you out there healthy- May you continue being bless and make sure to take a minute each day and give thanks for what you have and give compassion where it is due.

To all those out there suffering- I pray for your happiness and hope there are many more "good days" to come. Keep your chin up and remember although sometimes it is rough-you are still YOU. We grow stronger everyday.

Thank you.