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!

Topamax and POTS. A bad combination.

Ok, so I went off the Topamax and I'm feeling much better. My cardiologist said that even though orthostatic intolerance is not a listed side effect, medications are not tested on people with POTS and we tend to react differently to them. He also said that some people with POTS are also more sensitive to medications and that medications may work differently in their systems. Meanwhile, my neurologist was telling me to stay on the medication and that passing out is not a side effect. I think this is one of those tough situations where you need to listen to your gut and go with what your body is telling you. Obviously I am not a doctor, and you should always talk to a doctor before starting or changing any meds, but if you feel like something is wrong, tell your doctor. As patients we need to remain active in running our treatment as partners with our doctors.

But you don't look sick...

This is an interesting little article. I happen to have fibromyalgia in addition to POTS, I found that this site had a number of interesting things for fibro. I do like the "you don't look sick" point it makes. If you let yourself "go" and act the way you feel, no one wants to be around you and they feel uncomfortable if they need to be, however if you put on a brave face and try to act normal, people say "but you don't look sick" and don't understand that you are really having a tough time. I guess life for those of us with chronic invisible illnesses are constantly trying to find a balance between the two.

http://www.healthcentral.com/chronic-pain/cf/slideshows/top-10-things-not-to-say-to-a-fibromyalgia-patient/we-all-get-more-aches-and-pains-as-we-get-older/?ap=825

There is actually a website/online community for people with invisible illnesses too!
http://www.butyoudontlooksick.com/

From my journal two summers ago...

"I’m scared. There, I said it. I’m scared. Terrified even. I feel like my life is spinning out of control and I can’t seem to stop it. There is something inside me that is causing problems, both physical and emotional. I try not to think about it, but the pain is constantly there to remind me. Its there when I eat, when I move, when I laugh too hard. No matter what I do, its there reminding me that I don’t know what is causing it and I can’t make it stop. I know possibilities, that scares me, but thinking that the doctors may not know what is wrong, that I might have to live like this for years to come is what I am the most scared of. I have plans for my life. I’m not too keen on change, I don’t like bad surprises, I’m impatient and stubborn. All I know right now is that there is something wrong with me, and no one can seem to figure out what. I hate sitting in the house watching the same movies every morning because I can’t sleep through the pain and can’t make myself get out of bed and deal with the pain of moving around. I’m going crazy sitting in the house all summer doing the same thing every day. I want to be going to work, making money, being with people, enjoying summer like everyone else seems to be doing. I want to not be worried, to not be wondering if I’ll be able to live a normal life again, to wonder if I can have kids, or if I’ll live long enough to see them grow up. It feels like someone read my mind while I was dreaming and decided to destroy all my dreams. Will I ever get them back? I’m not saying I’d just roll over and give up, thats not me. I’d fight for it. For my dreams. For my future. I just need to know what I’m fighting and how to fight so I can win. I’ve always been a fighter, an independent person, that girl that no one worries about how she’ll turn out. I’m proud of that person. I hate having to ask for help, to rely on other people for things. Its humiliating to have to ask people to help you walk, to bathe, to make food for you. Over the years, I’ve learned how to take care of myself, and for the most part, before this, I could do that. Now that I'm sick, that is hard if not impossible to do. And that kills me." 


Today i am grateful that I have a diagnosis and that the fear of the unknown is behind me. If you're trying to get a diagnosis, keep positive, the answers will all come in time.