Radical Acceptance

Fear is something I need to work on. I struggle with it multiple times a day because of this illness, but I can't let it take over my life. By allowing fear in, I might as well be waving a white flag and saying you have won. It is hard to not let your mind wonder into those dark places of this will never get better. But what will I do if I have to battle and fight for my life for several decades?

I was not much of a planner for my life, I believed whatever happened, happens for a reason, but I did NOT think this would happen to me. Not in a million years! The life I lived before was completely opposite of how I live my life now. I was strong, extremely independent, an exercise fanatic, and pushed myself to all limits. Now at 23, my mother has to help me bathe, stand up/walk, prepare my meals, and the hardest task, be a strong caregiver. I didn't think I would have to have home health help take care of my picc line, or use a walker in public, but life has definitely thrown me a curve ball.

What can you do though? The only way to be able to climb over this gigantic mountain of emotional and physical struggles is to do your best and except this new life. The more one struggles and tries to resist it, the tougher life is. I have been reading a book called "Radical Acceptance, Embracing Your Life With the Heart of Buddha", and I really recommend reading it. It will help you in multiple parts of your life and is a book that you can always go back to for a way to be uplifted again (I am constantly highlighting). It takes you step by step on how to recognize, be at ease and then accept our struggles. The writer interjects different real life situations and stories so the reader can really relate and get closer to the book. In the end you will learn different tools to help you in your life and hopefully you will become more at peace with yourself.

"We have to face the pain we have been running from. In fact, we need to learn to rest in it and let its searing power transform us."- Charlotte Joko Beck

Stay strong... you are not alone.

(Apologizes if parts of the post don't make since or if there are errors, my noggin has liked to stay in a foggy state lately)

What's your ride?

So this past Saturday while most people were out shopping for their finishing touches for their Halloween costume, I was picking out what color I wanted my rolling walker to be. Did I want blue or red? What type of hand breaks did I like the best? And most of all did I want to customize my basket and add a seat cover? I didn't realize there were so many things to take into consideration when picking out this mode of transportation.

It would have been an easy choice of color if i wasn't a giant and needed the tallest walker. For some reason the taller population does not get as many color options, and i simply don't think that is right! I wanted the sleek and chic, classic black but had to settle for "midnight blue".... sigh.  I was a very unhappy camper because i wanted to try to stand out as little as possible. This is why I opted out for the zebra print pouch and cheetah seat cover.

Since we were at the medical supply store I gave in and bought a wheel chair also. There have been several days were i can not walk from the car to my bed or crawl from the floor to my bed so having a wheel chair on hand will be helpful for my caretakers.  It will even allow me to go for a stroll outside so I can get out if my house when I am having bad spells like the last three weeks.  I would rather stand on my two feet and walk at the outdoor shopping center, but I can't be stubborn and just be grateful this will give me the opportunity to escape the four walls I look at every day.

The last purchase I made I am actually kinda excited about. It is an aerobic pedal exerciser for your legs and arms.  It is a small gadget that doesn't take up much room like a recumbent bike would. It also has the option to add resistance which is another great feature. This


I did all of this while wearing a foam neck collar... Boo... I am 23 going on 80 it feels like.

Not the "physical" heart

This new physical body is not what I would have chosen, but there has to be a reason for my genetic imbalance.  All of these days of lying around gives me the opportunity to soul search.  Only I can figure out a way for me to get my life back together, make an income, and become independent again.  My future is in my hands and I cannot let go of my hopes and dreams, or else there is nothing to live for.  I do not care too much for my physical body because of all it's problems, but my soul and heart (not the literal organ) I love.  I have discovered that is what is most important, how beautiful your inside is.  That is the way you can impact a persons life or even change the world.

Look at Christopher Reeve - he was bound to a wheelchair after a horrific spinal cord injury and he was Superman!!  He had every reason to loose hope, but he knew he still had a purpose in this life.  Even though he had to depend on his wife, children, and loved ones to be his caregivers, he still did not let his injury stop him from living. He became a famous activist bringing more science to neurological research to find a cure and to gave people with disabilities hope. His physical body was not perfect, but he had a beautiful heart and soul.  That spirit he had is what has continued to inspire people even after his passing.

It is very hard to be in limbo and not know what direction to go in. It is hard to not get stuck in the darkness or vicious cycle of this illness. But it's only up to you to find your way out. 


Quote of the Day: "Life is full of setbacks.  Success is determined by how you handle setbacks"

Man's Best Friend

Just another day on the couch with my best friend. He is kinda a couch/bed hog, but I don't mind curling up in a ball so he gets more room. If I didn't have him by my side everyday, the daily battles would be so much harder to deal with. He has become a sleepyhead just like his owner, but he has a valid excuse, he is going on16 years young.

Its amazing how he can sense when I am not well. He becomes more cuddly and attentive. He gets extremely anxious when I lay on the floor to meditate (its really cute). He starts pacing and will nudge my hand because he is afraid something has happened to me. Poor guy has been through a lot with me. I do not help his anxiety issues one bit.

I am thankful for my best friend everyday and never forget to tell him I love him multiple times a day. Everyday for 15 years he has always put a smile on my face.  I have really soaked up and enjoyed each of those moments these past two years.

Quote of the Week: "If you can't fly, then run; if you can't run, then walk; if you can't walk, then crawl; but whatever you do, you have to keep moving forward." - Martin Luther King, Jr.

Post Trip

For my college graduation gift, my mom gave me and my best friend a trip to the Outer Banks in North Carolina.  And boy did I enjoy the trip!! It was not hot, but not too cold to lay out on the Atlantic coast.  There were barely any tourists, so it was a very peaceful, quiet, and rejuvenating trip.  The islands or "villages" were very relaxing and each day we experienced at least one amazing thing. I am beyond grateful that I got to spend five days with Lindsey.

Our first experience was going to the Wright Brothers National Memorial. On the island of Kill Devil Hills is where the Wright brothers took their first flight.  The hill is 90 feet tall and you can hike up the path to the top to take in the scenery. Lindsey is just as determined as I am, and had it in her mind that she was going to push me up to the top of the hill in my wheel chair. She wanted me to experience the breathtaking view and feel what it was like to jump off the hill with two wings attached to you. She would not take no for an answer and refused to let me help her. I always knew she was special and had a huge heart, but when she pushed me up that 90 foot hill it really showed me how selfless, caring and truly amazing a person she is. I am beyond blessed to have her as my sidekick.
 

On top of Kill Devil Hill

These are models of the first glider & airplane that were created

We discovered that since I have a medical condition and considered disabled, I can get into any National Park for free for the rest of my life. I was given a free access pass which I show any time I go to a National Park and I will get in free along with three other people.  If there is a facility fee this pass will grant me up to 50% off. There are 397 national parks and Lindsey and I are making it a mission to cross off as many on the list as we can. It is a fantastic way to enjoy this beautiful nation one destination at a time.  Also, Amtrak has a new promotion with certain parks where the admission is incorporated into your round-trip train packages. So you and your family can beat the airline fairs and travel by train and see part of the country side you would not ever see.

Our next adventure was climbing the Cape Hatteras Lighthouse which is in Buxton, North Carolina.  I slowly climbed the 248 cast-iron steps that lead to the lantern room. We took our time and took many stops, but I was determined to climb the tallest lighthouse in America! No matter what, my adrenaline was not going to let me not complete this mission.  When I got to the door that led to the platform that went outside so many emotions came over me...I realized that I just climbed a 200 foot lighthouse, which is equivalent to 12 stories without fainting.  For the first time in a very long time I actually felt like I accomplished something.  I miss all of those feelings.

Lindsey and I on top of the world

Another stamp in our Nation Park Passport

"Oh man I actually did it?!"

I did it! I flew on a plane, went to the top of the Wright Brothers National Memorial, laid on the beautiful beaches on the Atlantic coast, went sailing for the first time, AND climbed a lighthouse! I could not have done it all without my best friend. She truly understands me, my limits, and this medical condition. She encouraged me to rent a wheel chair (which was a hard step for me to take) because she knew it would help me conserve my energy and allow us to do more things...and she was right.

It is my goal to travel the world and soak up every little jewel in each place. This trip really taught me that there is no reason to give up on my dreams.  I am still not used to my new limitations, but I am slowly learning to accept them and realize that they should not stop me from still enjoying life.

Kinda a good deal

It is a new season and for most women that means a new pair of shoes. Kind of hard to resist a discount from Crocs. Save $15 on orders of $75 or more with code FC12 until 10/3 at Crocs.com!

Travel Necessities

As I am packing getting ready for a five day stay at the Outer Banks, North Carolina, I am going through a check list of all the important things I should carry with me. Some of these items are good to have on you at all times, not just when traveling.

1. ID/Health Insurance Card Emergency
2. Medical ID Wallet Card- (It is free to make and on it you can have a list of  your medications)
3. Refill ALL medications and bring the bottles with you
4. Compression socks, sleeves, and hose
5. Small snacks hidden everywhere- (my purse, my carry on, luggage and pool bag)

6.Withings blood pressure monitor- (blood pressure cuff that hooks up to your iphone, ipad, or ipod touch- Something I really need to purchase
7. Resistance bands- (the are small, easy to pack and a way to not get deconditioned)
8. Large refillable bottle water containers

Quote of the Week: “The best and most beautiful things in this world cannot be seen or even heard, but must be felt with the heart.” - Helen Keller

So go explore and experience the world through your heart. 

And they are off!!

I feel as if I am a Kentucky Derby race horse.  Big, powerful, and full of potential.  Trotting to my post position I have thoughts racing through my mind ...Will I be successful? What place will I come in amongst the other horses? Will my body give out and I tear or injure something? Simply, what is going to be my outcome? I have no other choice but to face this event head on. There is no looking back and I can't back out now. I am here to win this race.

I feel like I have been trapped in the starting gate (aka: POTS) for a long time. The walls are suffocating, there is no where to move, I am jittery, distressed, and I am anxiously awaiting my break. I do not know if I can handle waiting any longer, I just want to be released. It feels like eternity before my gate swings open and I am off!

...

I have been looking for that magic key to release my starting gate so I can be free for almost two years.  I think Midodrine is it. It took about three weeks before my body fully took affect to the medication, but I have seen a tremendous improvement since it has begun to work.  The medication has allowed me to be on my feet longer, do more small activities, and accomplish more at the gym. As a result, I can feel I am getting stronger physically.  The stronger I can get the more good days I will have.


Midodrine works by stimulating the nerve endings in the blood vessels which then makes the blood vessels constrict. As a result, your blood pressure is increased. By having a "normal" and stabilized blood pressure, it reduces your heart rate. Before I was taking it daily, my heart rate would spike constantly with doing any little activity, such as standing up.  In result, I was constantly fatigue with a racy heart.  When your heart rate goes over its threshold, it pulls energy from tomorrow and the next days source to power your body so the following days you are at a low. It is a viscous cycle.  

The FDA talked about removing Midodrine from the market but then changed their mind. Thousands of people who take this medication explained to the company how this little pill was so vital for their quality of life and they truly needed it.

I am beyond happy that the FDA did not remove this medicine because it has given me some of my life back.  It has given me the opportunity to compete in the race I call life and actually have a chance to cross the finish line.

Quote of the Day: "When our motivation is greater than our fear, it is amazing what we can achieve."- Anonymous 

NaCl

The majority of Americans have to reduce their salt intake or completely cut it out of their diet (yuck). One positive thing of having POTs is our requirement to consume salt. We get to load up each meal with that baby!

This chemical compound is essential for human health. It is needed in every single cell of our body.  Consuming a lot of salt and staying hydrated is a very important part of the treatment for dysautonomia. It is a key ingredient in our treatment program because it helps keep a normal blood volume because it is retained in our blood plasma.  We are very sensitive to a change in blood pressure and this ensures a more stable blood volume. When we consume salt, it has the benefits of alkalizing the blood and other vital fluids, helps retain water, and is very involved in the process of metabolism. I have heard the saying many times, "water follows salt", so that is why it is important to stay hydrated as well.

There has been a lot of hype about sea salt but why?

What is the difference between sea salt and table salt?

To start off, salt is not necessarily bad for human health, it is just the way the industry manufacturers the product which could be harmful to our body.

Sea salt is obtained directly through the evaporation of seawater.  It is all natural and does not go through a refining process. This leaves a lot of the natural trace minerals intact such as magnesium (which has many health benefits for both POTs and EDS patients), calcium, potassium, and bromide to name a few. The amount of natural minerals which are in sea salt may be minimal, but for those of us who have a hard time simply consuming food, anything is better than nothing.

Table salt, on the other hand, is mined out of the earth from salt deposits. It goes through a highly refined process which makes it 97 to 99 percent sodium chloride. The refining process strips table salt of its natural trace minerals and then puts in additives.  These chemicals include everything from iodine, fluoride, anti-caking agents, sodium bicarbonate, toxic amounts of potassium iodide and aluminum derivatives, and other additives.  Once it hits the supermarket shelves it has become a chemically altered product.


If we need to consume a lot of one thing, we should make sure it is as natural and healthy as possible.  Our bodies are fighting itself.  The last thing we need to do is add in chemicals and a foreign product for our body to process and defend against. 

Sea Salt Vs.Table-Salt Article

I was in the hospital last week to try a new medication to hopefully get my POTs in order. I was eating my lunch when the nurse walked in and saw me pooring salt on my chicken breast.  She looked so puzzled and asked me what the heck I was doing.  I explained the logic behind what looked like asking for a heart attack and she said that made complete sense.  As she left the room she was chuckling and told me I better guard my salt shaker because she had some angry cardiac patients on my wing who were on a no salt diet and were unhappy campers!

You know its bad when you bring your own salt shaker with you when you travel. 

Quot of the Day: "Be not anxious about what you have, but about what you are"-- Pope Gregory I

Crocodile Obsession

I loved Jeff Corwin minus the nasty dinosaurs he fought with in the water and on land.  Their scaly skin, their monstrous claws and their powerful tails really freak me out. How on earth did he win battles against crocodiles that weighed over a ton? Since his show on Animal Planet, I have been anti Crocs.  Just hearing the word gives me the hebegebees.

When Crocs launched their footwear line I immediately exed them out. The name of the company was almost as bad as the horrendous clogs that made them famous. I swore when they first came out that I would NEVER put those crocodiles on my feet. Welllll....times have changed and medical conditions have arose....and Crocs have been a lifesaver!!

I had a very difficult time finding a gladiator type flat that was both cute and comfortable. Most stylish flats have zero cushion, arch support, and stability. So when I saw a cute gladiator style Croc, I broke my no Croc rule and tried it on. This shoe has it all!!  It has the same appearance as other gladiator shoes, but has the bonus of being extremely comfortable.  It is flat but provides plenty of cushion throughout the entire shoe. The circulation nubs along the footbed prevent your foot from sliding around which is a problem with most other flats (non Crocs).  Off your foot it looks like a simple shoe, but once you put it on the cute factor rises! I have a lot of joint pain, but this shoe takes the pain away! It has given me some of my freedom back.  I can now go shopping, go downtown or simply walk around my house for a much longer time without pain. 

I have both the black and bronze pair and wear them almost every day! I could not be more happy with my purchase!
Crocs Black / Black Sexi Flip Women's Comfortable Sandals

The Hover Slip-On Canvas shoe is another very comfortable and adorable shoe.  It has a casual sporty look but provides all the comfort a woman would need in a shoe.  It is light weight and allowed me to be on my feet for a much longer time period.
Crocs True Red / Oyster Women's Hover Slip-On Canvas Women's Comfortable Sneakers

I'm really happy Crocs have expanded their collection from their the traditional clog to many styles of sandals, heels, wedges, mary janes, boots, etc., etc.  Their super styles appeal to all ages!

I hope this gives you an excuse to buy another pair of shoes :) 

Silence

If you can, take a few moments to sit silently in peace. Simply sit in a chair and breathe in... then breathe out. Feel each breath and how the air moves through your body. Do this several times, solely focusing only on your breath. When you feel more grounded to your being, start to listen to all the noises in the environment. All the beautiful birds and their distinguished callings for one another, the squirrels squawking at each other or a big truck hauling down the road. Tuning into the sense of hearing helps ground you even more. Just sit and observe your body and the sounds for 5, 10, or 30 minutes, however long our body desires that attention. When you are ready open your eyes slowly. Not only will your body feel lighter, less pressure, and constraint, but your eyes will appreciate something simple as a little bird that is before you.

The past two days I have had the privilege of watching these two little guys (see picture below) learn who they are. They fell out of their nest one at a time. For several hours they just sat in one spot observing what was around them. Slowly they grew in size and I figured out they were puffing out their wings, getting ready for flight. After sitting there for three hours, they took their first giant hop. They bounced around several times then then all of a sudden took a long pause, just sitting there. They looked worn out, but suddenly their wings slowly expanded and were shaking. Then came a hop followed by a wing expansion. You couldn't help but smile. Watching them trying to put each piece together was so amazing.  Their determination was inspiring. These little guys were trying so hard to conquer the world and not let IT swallow them whole. Every species has their own struggles, but with some determination and patience we will all CONQUER.

With an illness we become self absorbed in our pain and symptoms. We are solely living each day only seeing and feeling our own body, that we miss out on so many small beautiful things that are around us. By taking a few moments out of each day to do the meditation above, it will help open your eyes to this world we live in. It is silly that there are so many beautiful things around us and we pass by them all the time.

This exercise will only help you become more at peace in your own body which will eventually reduce some of the pain.

 

Quote of the Day: Do not dwell in the past, do not dream of the future, concentrate the mind on the present moment.- Buddha

Lost in Translation

So I have not written in while because I have been doing a lot of self reflecting. A tragedy happened with a close friend of mine and it has been a reminder of how short life truly can be. It is just too short to have "bad days" or consume everyday with all of lives stressors. Something terrible could happen at any time so we should focus on truly living and enjoying every minute of this one life that has been given to us.

I undoubtedly believe that we all have a purpose in this life.  My friends was to spread happiness, make others smile and share his carefree spirit.  He was so good at making you forget about your "problem of that moment" and helping you slip away to a blissful state of happiness.

Sometimes you may not know what your meaning on this earth is, but do not worry, you will discover it.  And once you do, take off with it.  Do not hold back by any means. Run with this passion and your heart will only be filled with love in return. You may have social connections to really educate people about your disorder or you may be a very positive person by nature and would be an excellent spokesperson to spread hope to others. Whatever it maybe, embrace it.  Decide what your "life's mantra" is going to be. It can be anything that your heart desires.

Peace&Love.

Quote of the day: "Don't ask what the world needs. Ask what makes you come alive, and go do it. Because what the world needs is people who have come alive." -Howard Thurman

Urban Boss

The word "boss" now a days has several different conitations. According to Webster-Dictionary it is defined as "a person who exercises control and makes decisions." A lot of times that title has a negative association with it. But Urban Dictionary sees it as "incredibly awesome, miraculous and great." Example: "Dudeee did you see that chick? She is a boss (with the s drawn out)."

At some point when battling an illness you are faced with the transition of having others tell you what to do, to discovering you need to be the leader of your own condition. You can either be hesitant on telling a doctor, friend, or family member something or be in control and speak up without fear of judgement. By telling somebody what you need, or what you can not do does not make you bossy, yet it means you want to have control over your own life.

Mentally decide how you are going to view the word "boss". Is it going to be the negative or positive association?

Stay strong.

Quote for the day: "Be who you are and say what you feel, because those who mind don't matter, and those who matter don't mind."-Dr. Suess

Summer Love

It is officially summer time!! Everybody is off from school, vacations are in order and the heat index (at least here in Texas) is creeping up to over 100 degrees... Ughhhh...  when it gets this hot even a person without dysautonomia can get sick.  Below are some helpful tips for how to handle the heat and traveling from the Texas Association for Dysautonomia Awareness website.
(http://us2.campaign-archive2.com/?u=67eb4a027e5a1ac1cc047bac3&id=f94c4beed3&e=18307614e3)


These are patient suggestions and should not substitute the advice of a medical professional.  The favorite heat tips of our members include:

• Hydrate well with water, gatorade, electrolyte drinks, and coconut water
• Use cooling vests (Cool Mist) or buy a cheap version of the camel back hydration system (can't have insulation) and fill it with ice water to keep you cool
• Rub ice on neck or feet
• Use wet towels or cooling neck wraps
• Stay indoors as much as possible, especially during high humidity

During long road trips, it is common for POTSies to feel too weak and sick before they reach their final destination.  Here are some tips to be able to enjoy your summer travels:

• Remember to eat small frequent meals to decrease blood pooling with digestion
• Stay hydrated and maintain sodium levels
• Use counter maneuvers: standing with your legs crossed, sitting in a low chair, sitting in the knee to chest position, leaning forward with your hands on your knees when sitting and tightening the buttocks, thigh and leg muscles when standing (particularly when sitting or standing for any length of time).
• Use Compression devices: The abdominal binders and compression stockings, help to reduce the amount of pooling blood. Compression stockings should be at least 30-40 mm Hg and will work best if they are waist high. Compression stockings should be fitted to achieve the greatest benefit.
• When driving, take the roads less traveled and take turns driving with another driver on long trips.
• Ask your doctor about additional medications for travel
• Airplane: Go through security with an empty water bottle and refill it after the check point.  You can request a wheel-chair when reserving your ticket.  You can also request to load the plane first in order to not wait in line while everyone is seated.  Hyperhydrate before take-off.  During take-off, put your feet in the chair and do counter maneuvers (this is the worst part of the trip).  Once the altitude levels out, you can relax.
• Traveling by car:  Stop at least every 2 hours.  At each stop, eat and drink to re-fuel.  Also be active for a few minutes.  A brisk 10 minute walk at each stop would be great if you can handle it. It recirculates the blood that has pooled while sitting.  When in the car, place bags or pillows under your feet and try to raise your legs as much as possible with out resting them on the dash (this could be dangerous in a wreck and could also hyperextend your knees.  Also be sure to properly wearing your seatbelt at all times.

I hope you got at least one idea from the list above! Today is a beautiful day so try to do something that you love.

xoxo

I once was this fun, energetic, active person but now that is all just wishful thoughts of who I hope to become. Dysautonomia is my enemy. She has stolen my 20's and has forced me to live a life of an elderly person. She has taken almost everything away from me except my fire inside to beat this villan and be become "normal" again. If you lose your passion inside, IT has won.

Luckily my fortune cookie was accurate and had a sense of humor.  If it was only this simple to not faint..

"But you don't look sick", is a common line we have all heard.  It is very heard living with a illness that is purely internal and those that you would think would support you and understand do not. You feel like you are all alone battling against your own body.  It is a brutle war but keep fighting.  You will make it, and like Rai said in the video there are a lot of beautiful things to experience in the world and we do not know how long we will be here so lets make the most out of everyday.

Have a beautiful day.