Happy New Years!

I asked friends on Facebook what they regret about this year and why. After I posted it, it occurred to me that I didn't have an answer. It took me a while, sitting and thinking about it, but still, nothing. So I looked at my calendar from this year and it was made clear what the problem was. I didn't really do anything this year. I did a few little things with friends, but the whole year I pretty much spent at home. I didn't do anything I regret, because I didn't do anything. Where did the year go? 

Next year I want to force myself to do more. Whether that means sitting outside on the deck on bad days or getting out of the house on good days, just doing something outside of the house. I also need to get into a routine of some sort of exercise. I've heard that it is important to exercise with POTS, especially your lower legs, but its hard to keep doing something that completely wipes you out. I plan to start by doing little things like yoga in bed and playing Wii (which is great for aerobics and you can do stuff on an exercise ball or in a chair). Once I get up to the point where I'm ready, I can try the seated bike and walking on the treadmill at the gym. It may not sound like much, but I'm trying to set small goals so I can keep them.

What are you planning on doing to better yourself in 2012? I challenge you to do something this year to make a positive impact on your life or the lives of those around you. Lets make 2012 a year to remember! 

A powerful message

This young man died recently of a heart condition. No it wasn't POTS, but I think that his message is relevant for everyone, and so I'm sharing it here. 

Trying to adapt

I saw this on another POTS blog and really feel like it belongs on mine as well. The other blog is called Brilliant Mind, Broken Body. 
"Three options exist when you become ill:
1) Deal with it, adapt, and keep living your life
2) Put your life on hold while you try to take care of the illness, assuming that you will rejoin the ranks of the living once you’ve dealt with it
3) Curl up in a ball and stay there"


I know that personally I've tried all three of these. I know we're all supposed to aspire to do #1, but some days its all just too overwhelming and all you can do is lie in bed and try to sleep until tomorrow in hopes that it will all go away. Some days I wish that this was all just some horrible dream, that I would wake up again and be me. The girl who I used to be, in the body that I used to take for granted. 
With POTS, you push yourself through and you either end up passing out or pay the price by not being able to stand up for a few days. I think that this is especially noticed in the holiday season when we are all very busy and traditions are put before limitations.  I sometimes still think that if I push myself, if I can make it through that long day of shopping or visit to the city with friends, that I won't pay the price. I always am proven wrong in the end. I think thats what is one of the most frustrating things about POTS, it limits you and its not like you can just push yourself through it and hope for the best. Everyday you only have so much that you can do and so with POTS you have to be very careful to choose what to spend energy on. Do you get work done or do you spend time with friends? Do you do the  dishes or do you run that load of laundry. Most people don't have to choose, but some of us need to prioritize what we do with what we have. 

I think the key to dealing with a disability is to learn to adapt. Learn what to spend your energy on, learn how to get more energy, and learn what to let go. For instance, this Christmas I did more than usual. I wrapped last minute presents and walked loads of boxes and bags down to the family room. I organized the presents and made everything presentable. I cleaned up the house, ran a load of laundry, decorated cookies. I played "elf" with the family retrieving presents from the tree and delivering them to family members in the den. I then helped to clean up the wrappings, brought my new presents to my room, gave the dogs their pills, etc. The list of little things adds up fast. Now because I did all that, I probably won't be going "after Christmas" shopping tomorrow with my mom and sister, for me thats okay. As much as I want to do that, its not worth giving up my place as the family "elf" or helping to make the holiday special. 
Some days we just have to choose. While work and chores usually win, its important to make time for fun things, even if it will cost you some in the end. Making the little things count helps too. Things like painting your nails in fun patterns, decorating cookies, and playing with your dog all make the days work worthwhile. Whether you're sick or not, in the end, you won't look back and remember the time you spent running errands, you'll remember the time doing things you enjoy. Make the time you spend count. 

Happy Holidays!

Whatever your reason, I hope you have a great holiday season! My all your wishes come true in a season filled with magic and hope.

Miss Daisey Mae

I know I've posted about making the little things count before, but these are my little things that have been getting me through this week. We got a new dog, well, she is 12 so not so new. She is a rescued Wire Fox Terrier. We think she was neglected in the past and probably a puppy mill pup, but she is loving her new home and her new family. She has some health problems, but in our family, we can deal with that. We know she's old, but we figure that if we can give her a few comfortable and happy years in her life, that is the best thing anyone can do for her at this point. Her name is Daisey Mae. 
We aren't sure why, but she has become very close to me (instead of my Mom like Lexi). She loves to sit next to me, follow me around the house, and watch me on my computer. It makes me happy to know that we can give her a loving family. There is something about animals, I don't know what it is, but they know when we don't feel well. Maybe thats why she likes me. I have been having a rough time in the last few days with my bp  following some emotional upset and she keeps coming over to me vibrating her little stubby tail. She doesn't wag her tail vibrates instead. She gives me a reason to get out of bed in the morning, and some days thats just what I need to get going. 


Meet Miss Daisey Mae!

iPots - iPods and POTS are more similar than you may think...

I saw this on a facebook POTS group and thought it was too good not to share...
I like how they use an iPod to explain the energy and physical limitations of POTS. 
It is brought to you by Barb Denk, who said:
"My husband created this for a teacher of my Daughter's who can't seem to quite grasp the complex issues surrounding POTS. I think this could be used for the many times Potsies spend explaining themselves."


Please take a look at the link below. 
<https://www.box.com/s/dpl0izi279x7xod3iiq1>  <-----

Music to keep you going

A friend of mine has become a singer/songwriter and recently released his first album. Take a look at his story in the newspaper if you want some inspiration. 


http://www.newsobserver.com/2010/06/20/540431/singer-chris-hendricks-is-living.html

"Diagnosed with cerebral palsy at a very early age, Chris was once told he would never walk. Today, he goes wherever his music will take him.

Chris Hendricks, a native of North Carolina, was born in Durham, the city he still calls home. His musical roots took hold when he began singing at the tender age of four – and he hasn’t stopped since. While his vocal talents evolved over the years, it wasn’t until his junior year at Elon College that Chris picked up his first guitar. It was love at first sight. After graduating from Elon, Chris devoted his attention to a full-time career in music, beginning with a stint at Disneyworld in Orlando, Florida.

Coming back to Durham, Hendricks met manager Aaron Gallagher who began to push Hendricks towards his dream of a career in music. After beginning as a solo act, Hendricks and Gallagher made the decision to form a band. This decision was confirmed when the two met guitarist / producer Matt Brechbiel at an open mic night. The songwriting sessions began. The songs evolved into stories full of lush melodies and harmonies. As the band began to play live shows, the effect that Chris has on people is undeniable. Everyone in the audience literally stops and focuses on him. He takes them on a journey into his world, and leaves them in awe, every time! Later in September of 2010, drummer Anthony Gallo joined the band and added a the missing dimension to band's sound.

In his first year of performing, Hendricks has been lucky enough to perform on tour with Grammy award winning artists MercyMe, Amy Grant, and Israel Houghton. Hendricks has also been lucky enough to play his songs live on Raleigh's major AOR station, G 105, and 96 Rock.

The Chris Hendricks Band has recently won the 2010 Deep South Entertainment's Battle of the Bands Competition. They also recently won the Gorilla Productions Battle of the Band's held at the Pour House in Raleigh, NC.

Most recently, CHB received the most votes in a contest held by Sony Electronics and may be featured in a 3D film in the summer of 2011.

A quick search on Youtube and anyone can see how far the Chris Hendricks Band's music is reaching. Covers of their songs are popping up from people all over the world.

“Passionate, soulful, and mesmerizing are three words that describe North Carolina singer songwriter Chris Hendricks' musical prowess and vocal style. With powerful hooks and catchy melodies, Hendricks has been blowing away audiences in the South East. and is looking forward to taking his music to all parts of the globe. It’s just another reminder of how powerful and personal his songs are. His voice pulls you in and leaves you wanting more. You feel his words, you feel his pain, and you celebrate his life along side of him. Fans of real music look out, your champion has arrived. His name is Chris Hendricks.” - Journalist Chris Wells

This is his band's information site. 
Chris Hendricks Band
http://www.reverbnation.com/chrishendricksmusic


His music is on iTunes as well if you like what you hear...

Invisible Illness Questionare

I found this on another POTS blog, and I thought it might be interesting to try:

1. The illness I live with is:

Postural Orthostatic Tachycardia Syndrome (POTS), Fibromyalgia, Allergies

2. I was diagnosed with it in the year: 

Fall 2010

3. But I had symptoms since:

Fall 2009

4. The biggest adjustment I’ve had to make is: 

Leaving school and work. Dealing with the frustrations while I was getting a diagnosis and treatment under control. (which I have done!)

5. Many people assume:
That I am either "faking it" or that POTS is no big deal. Mostly this is because I only leave the house on really good days. POTS is a very real disorder that cannot be faked, there are ways of seeing what is going on through tests, which is how I got diagnosed. 

6.The hardest part about mornings:  

Actually getting out of bed takes a while. I work my way to an upright position slowly, which helps me to not have problems with my HR and BP. Also, taking a handful of pills is never pleasant. 

7. My favorite medical TV show is: 

Grey's Anatomy or House. I love the guilty pleasure of the soap like Grey's and I like trying to beat House to a diagnosis. 

8. A gadget I couldn’t live without is:  

My iPhone or MacBook Pro. Fun fact for POTSies, there are apps for tracking your BP and other symptoms. They come in very handy when its time for the doctor visits. 

9. The hardest part about nights: 

Usually by nighttime I am feeling at my best. I actually find it hard to go to sleep at night because I feel good and want to get stuff done. 

10. Each day I take: 

Florinef - for my BP and POTS

Midodrine - for my BP
Atenolol - for heartrate and POTS

Lunesta - to help me sleep

Zyrtec - for allergies

Paxil - for BP and migraines

Tramadol - for fibromyalgia as needed

Zofran - for nausea

Multivitamin, B complex, Vitamin C, Vitamin D, Calcium

2-3 liters water

32+ ounces gatorade

4000+ mg salt

11. Regarding alternative treatments:  

Vegetarian diet for BP, High salt diet, Huge liquid consumption, yoga/meditiation, tai chi (when my BP is high enough)

12. If I had to choose between an invisible illness or visible I would choose:

Visible if I would still look like myself. I know that sounds vain, maybe it is. I would rather be in a wheelchair and have people be understanding than have people think I make it up. It is incredibly frustrating when people don't understand.

13. Regarding working and career:  

I had to take a break for a while, but as of early November I am ready to go back to work part time. 

14. People would be surprised to know:  

That I'm sick. Most of the time when I am out of the house it is a good day and I feel almost normal, so most people I see don't suspect that anything is wrong. 

15. The hardest thing to accept about my new reality has been:  

That I have limitations now. I've lived my life mostly without limits up to when I got sick, now I only have so many spoons and have to choose what to use them on. 

16. Something I never thought I could do with my illness that I did was:  

Dance at a wedding and go for a roadtrip. I took extra medication for both, took precautions, and paid the price afterwards to some extent, but I did it. 

17. The commercials about my illness: 

Don't exist. 

18. Something I really miss doing since I was diagnosed is:  

Working. I really loved my job and the people I worked with. I also miss going to school, I love to learn and to interact with classmates in class discussions. Also, I miss SCUBA diving, something I may never do again, and I was a Master Diver and Rescue Diver, so it was something I worked hard at. 

19. It was really hard to have to give up:  

Caffeine and alcohol. Not that I need either, but I really enjoy a cup of mocha or a nice glass of white wine once in a while. Being in a bar with people drinking and not being able to drink sucks. As does walking past Starbucks. :(

20. A new hobby I have taken up since my diagnosis is: 

Blogging! Also various arts and crafts like quilling and quilting. 

21. If I could have one day of feeling normal again I would:  

Go SCUBA diving or go on a day trip to NYC or DC. 

22. My illness has taught me:  

Who my friends are. 

23. Want to know a secret?  

I secretly wish I could write a book about my life. I've been around the world on a ship for 4 months, learned to SCUBA dive while living in the Caribbean for 2 months, lived in Spain, visited most of the 50 states. I've seen an erupting volcano, seen Presidents in office, mascoted for college and professional sports teams, lived outside at a camp for a summer, worked in a haunted prison. I've written an auto-ethnography, published an ethnographic film, and conducted sociological research on my own. I've raised $250,000 for Children's Miracle Network, $15,000 for Hurricane Katrina, and $5000 for American Cancer Society. I've done a lot of things in my life, I'm not going to let POTS stop me from continuing that trend, and I'd like to share that message with others.

24. I love it when people:

Try to help. Me or other people. Seeing people trying to do good for others is magical. 

25. My favorite motto, scripture, quote that gets me through tough times is:  

"Now and then life doesn't seem to go the way you expect it to. Plans change, people change, dreams change. You change previous opinions of people, you take that step on the wild side which you never thought you’d take, you realize that being wrong about something isn’t always a bad thing, and every once in a while, you learn to surprise yourself. In fact, I've found that sometimes it’s the changes you never expected that you end up loving the most." 

26. When someone is diagnosed I’d like to tell them:

You will get through this. You are strong. It could always be worse.

27. Something that has surprised me about living with an illness is:  

How misunderstood it is. 

28. The nicest thing someone did for me when I wasn’t feeling well was:  

Be there for me. Keep me company while I was in bed. Making me whatever food I could stomach. Helping me down the stairs so I could watch tv even though it was easier for me to stay upstairs in bed. Trying to help and be understanding. 

How to make the drinks you need better...

I don't think I'm alone in this, but as a POTS patient, I am so sick of Ensure, Gatorade, and Ginger Ale. I have however found a few things that make these more palatable.

Ensure:
On days when I am too nauseous to eat, I drink an ensure as a meal. It helps to maintain the nutrition you need, to make hunger go away when you can't eat, and to prevent you from losing weight too fast (which messes with your BP). I only like Chocolate, so thats the only flavor I have done this with, but I mix it with chocolate syrup and or ice cream and make it into a shake. It makes it so much better to drink, and when you are drinking Ensure, you need the extra calories anyway. Also, this may not sound as appetizing, but when it comes to Ensure, nothing is... I drink mine at room temp so I can chug the whole bottle really fast. Gets it over with. I find that when its cold, I drink it slower and have to actually taste it more. Also, they all taste slightly different, so if you don't like the chocolate of one variety, try another. The High Protein kind has the least fat for the volume, has high protein, and the highest salt, so it may be a good place to start for you POTSies out there. (Update: I just found this on the Ensure website while I was checking out nutrition... http://ensure.com/recipes.)

Ginger Ale:
Another thing that helps with nausea is Ginger Ale. I add thin slices of ginger root or cranberries to mix it up a bit. The ginger helps the tummy too. There are types out there with extra ginger like http://www.reedsinc.com/brews/, but I am very allergic to honey which is an ingredient.

Gatorade:
All POTS people know that gatorade can be both your best friend and your worst enemy. You need to drink it and you get sick from drinking so much of it. After the first three bottles each day, I can barely force the last two down. My newest discovery in food trickery is mixing Gatorade with Sprite. The flavor gets a little more mild and the carbonation makes it taste better (at least to me).

In other news, I got a new bed! 

Its a queen size! 

I figured since I spend so much time in it, 

I might as well invest in a good one... 

LOVE IT!

How to make the drinks you need better...

I don't think I'm alone in this, but as a POTS patient, I am so sick of Ensure, Gatorade, and Ginger Ale. I have however found a few things that make these more palatable.

Ensure:
On days when I am too nauseous to eat, I drink an ensure as a meal. It helps to maintain the nutrition you need, to make hunger go away when you can't eat, and to prevent you from losing weight too fast (which messes with your BP). I only like Chocolate, so thats the only flavor I have done this with, but I mix it with chocolate syrup and or ice cream and make it into a shake. It makes it so much better to drink, and when you are drinking Ensure, you need the extra calories anyway.

Ginger Ale:
Another thing that helps with nausea is Ginger Ale. I add thin slices of ginger root or cranberries to mix it up a bit. The ginger helps the tummy too. There are types out there with extra ginger like http://www.reedsinc.com/brews/, but I am very allergic to honey which is an ingredient.

Gatorade:
All POTS people know that gatorade can be both your best friend and your worst enemy. You need to drink it and you get sick from drinking so much of it. After the first three bottles each day, I can barely force the last two down. My newest discovery in food trickery is mixing Gatorade with Sprite. The flavor gets a little more mild and the carbonation makes it taste better (at least to me).
In other news, I have a new bed! Its so soft!

 I figured since I spend so much time in it, I might as well invest in a good one... 

LOVE IT!