October 31, 2012

Halloween Hater

Yes, I'll admit it.  I'm a Halloween Hater.

I love Fall and pumpkins.

But I hate dressing up and I hate scary things. 

Can't wait for tomorrow to be November 1st!

This image pretty much sums it up.


Allison posted this on my facebook wall a couple weeks ago 
and it was just one more reminder why she is my best friend. 

P.S. I also REALLY hate when women feel like they need to wear 
like NO clothing at all in order to have a Halloween costume.  
Check out this guest post I wrote almost THREE years ago about theme parties and costumes.

Day 31: October is Global Dysautonomia Awareness Month


I can't believe the end of October is already here!

I hope you've enjoyed reading these POTS and have learned more about POTS. 

Although I won't be posting about POTS daily, 
POTS is a constant part of my life and there will be more posts in the future.
  
Click the "Join this Site" button over on the right column 
to stay connected to this blog and up to date with the posts!

Here is a complete listing of all the posts from this month:
1: October is Global Dysautonomia Awareness Month  
2: What is POTS?                                                              
3: Getting a Diagnosis                                                          
4: What is a Tilt Table Test?                                               
5: A Must Read                                                                         
6: Finding Support: FB Pages, FB Groups, Blogs                 
7: I Heart Saline                                                                     
8: 10 Things Not to Say to Someone with a Chronic Illness    
9: POTS Always Seems to Sneak in my Suitcase...               
10: Do You Have Food Allergies?
11: Living at my own Pace      
12: Maintaining Your Health Records
13: Medical Information Sheet
14: Ask Me Why I Park Here
15: Halfway Point
16: Staying Open to Living Outside the Box
17: The Power of Prayer
18: POTS and Exercise
19: That One Guy from the Wiggles
20: Remembering to Take Those Darn Pills
21: Finding Support- Research Organizations
22: Changes of Plans
23: Stay at Home Date Ideas
24: What Can You Do?
25: Keep Communicating...be clear, be constant!
26: You Know You Have POTS When...
27: My Beautiful Wife and the Nagging Insurance Company POTS (Guest Post by Grant!)
28: If I looked as bad as I feel, I would scare your children.
29: POTS: It's not rare, it's rarely diagnosed.
30: My Story
31: End of October

Thank you for reading one, some, or all of the POTS posts this month.  I am not a doctor and all decisions regarding your own personal treatment should be discussed with your own doctors.  Remember, I am just a patient.

Please keep sharing, tweeting, re-posting, commenting, discussing, etc.  
Spread awareness.

October 30, 2012

Day 30: My Story

In February 2007, I had my appendix out.  And while I’d like to tell you that was the easy part of my story…there really is no easy part.

See, I have always had cold feet.  No, not like I was scared to walk down the aisle and marry Grant cold feet.  But, feet so cold I always have to have socks on.  Well, in November 2006, I was a sophomore at the University of California, Davis, studying in the common room of my apartment with my cozy socks on.  My phone rang in my bedroom and I went running in to pick it up before my phone sent it to voicemail…there was a fraternity party and we were making plans for that evening.  And while I share the next part of this story quite freely when I’m telling it in person…I’ve never shared this in writing before…I slipped on the tile that covered the floor of our common room right as I got to my door (our bedrooms were all carpeted) and slammed my right side (right above my right hip) into my round doorknob.  It hurt so much.  I’ve never felt pain like that before.  A nasty bruise formed instantly and lasted for weeks.  But other than a really embarrassing story, I never really thought much about this incident again.

Fast forward to the first Monday in January 2007 and I was on the phone with my mom practically in tears because of the pain I was having on my right side.  It took them six more weeks to figure out I needed my appendix out.  They went through a whole series of other diagnoses, but it wasn’t until I was curled up in a ball in the ER that they finally did a CT to note that my appendix should probably come out.  I didn’t have appendicitis; my appendix has just stopped working.  The organ had died and hardened.  I think it’s from when I slammed my side into the doorknob, but that’s never been medically confirmed.

After surgery I developed an allergic reaction to the antibiotic (Mefoxin) they gave me prior to surgery.  I had hives all over my body.  Additionally, my grandfather and I share an allergy to adhesive tape.  This allergy caused the incision site to become extremely irritated and looked infected.  That spring (2007) I tested positive for mono.   That spring and summer I began to feel very sick after eating.  It started with terrible headaches and moved into gastrointestinal symptoms.  For the next two years I was sick off and on.  I have tested positive for the antibodies of mono three times and my levels were high enough that the doctors considered the virus to be active all three times. (Although most doctors swear you can only actually have mono once.  This was not the case with me.)  I saw specialist after specialist to rule out every autoimmune disease they could think of.  Each time I had blood work done, the results would always come back dead center of normal.  Each doctor I saw settled on a diagnosis of Chronic Fatigue Syndrome.  And although I truly believe that Chronic Fatigue Syndrome is a real and debilitating illness, something inside of me told me to keep searching.

In the midst of all of these issues, I was still continuing to feel sick after eating.  Not all of the time, but enough of the time to cause concern.  My doctors suggested it could be part of Chronic Fatigue Syndrome but I didn’t agree.  I started keeping a food journal.  Each time I didn’t feel well after eating, I would write down the food I ate and the symptoms I had.  I realized that each time I ate garlic, I felt incredibly sick.  After hearing multiple people tell me I COULD NOT POSSIBLY be allergic to garlic, I found my amazing allergist.  And he said of course you could be allergic to garlic.  After a simple skin test, we discovered that I am severely allergic to garlic and need to not eat any alliums.  And that I have a bunch of food intolerances as well.  I thought all my health issues would go away now that we knew what the deal with my food allergies was, but I still struggled over the years with feeling sick and fatigued.

I've seen more doctors than I can count, and provided more vials of blood than most people do in a lifetime. I've seen specialists and even a holistic healer, tried various medications, and spent countless hours on wikipedia trying to diagnose myself when all my doctors could not figure it out. The diagnosis they all seemed to settle on was Chronic Fatigue Syndrome. A very real, and debilitating disease. However, I've always felt like a piece was missing.

Fast forward to June 2010…I went out for sushi with this cute, athletic guy I knew from high school and after a few short weeks, he had moved across the country for Army training at Fort Benning, GA.  Suddenly, I was on planes every few weeks taking red eyes and xanax to spend as much time with him as possible.  Towards the end of April/May 2011, I was starting to have more a more difficult time with take offs and landings, and I would end up spending most of the weekend sick at his apartment.  When I would get back to California, I would have a very hard time standing up to teach (the transition from sitting to standing was especially difficult.  On more than one occasion I thought I was going to pass out in front of my students.)  Looking back on that time, my mom and I think all the flying and traveling is what kicked my POTS into high gear.

In June 2011, I packed up all my belongings, left my dream job, and all my family and friends to move to Clarksville, TN to be with Grant.  I was settling into our new home, making new friends, starting a brand new job, and planning a California Christmas wedding from the other side of the country.  By August I felt so sick I was barely making it through the teaching day.  Mom flew out and my gastroenterologist did a colonoscopy to rule out Celiacs disease or Crohns disease.  The results were completely normal and I went back to teaching.  The Friday before Labor Day Weekend I was so sick that I had to leave work early. Grant and I had plans to go out of town that weekend to see his extended family, so after a quick nap and a lot of peppermint tea, we hit the road.  I was exhausted most of the weekend but managed to make it through.  I felt so sick that we ended up driving home Sunday night instead of Monday so that I could have an extra day to rest before going back to work.  Monday we went grocery shopping at Wal-Mart and that is where I had the worst POTS episode (although we didn't know what was happening at the time) I have every experienced.  We were in the check out line and everything started to spin and go black.  We got me seated, and Grant got me some water, I still felt clammy and ended up throwing up. (Don’t worry, I was terrified of ending up on peopleofwalmart.com for weeks, but thankfully no one caught it on camera!)

My primary care doctor here was useless but she referred me to the Vanderbilt Integrative Health Center.  For the next six weeks they went off the theory I had Chronic Fatigue Syndrome.  They offered dietary suggestions, had me see their health psychiatrist, and sent me to pool therapy.  None of it changed anything, and most days were spent in bed or on the sofa.

But after years, YEARS, of waiting, one chance phone call changed everything.

I was supposed to be flying home from California and was incredibly sick.  My lame doctors in Clarksville weren’t doing anything (big surprise!) and I was able to get a hold of Blaire, my contact at the Vanderbilt Integrative Health Center.  She patiently listened to my symptoms and said, “Have you ever heard of POTS, because that sounds like exactly what you have.  Why don’t you look it up and come in for an appointment with our director when you’re back from your trip.”  All it took was one phone conversation for four years of searching for a diagnosis to end.  When I called my primary care doctor to discuss it, the receptionist thought I was calling to ask for a marijuana test for myself. As with any new suggestion from the doctor, I had to google it. I didn't even know what POTS stood for. Thanks to wikipedia, I now know that POTS stands for Postural Orthostatic Tachycardia Syndrome.

A month later I was meeting with my cardiologist and he was ordering a tilt table test.  I’ve written about it here, here, and here…I would never push ANYONE to have this test unless they really need it!

The recovery from the tilt table test was brutal (as you can read in the previous posts here, here, and here…).  The whole experience was traumatic, but I survived and after four and a half years, I finally had the correct diagnosis: Postural Orthostatic Tachycardia Syndrome.  Having seen so many specialists over the past few years and looking at the timing of everything, it is pretty clear that my POTS was triggered by my appendectomy in college.  The trauma from the surgery, the allergic reactions, or the mono set off this dysfunction of my autonomic nervous system.

At the follow-up with my cardiologist he put me on a beta blocker twice a day.  Since that appointment, I have only been getting better.  I still have bad episodes and bad days.  And right now I’m choosing not to work because the schools here are TERRIBLE.  But I am now able to work out three times a week at boot camp.  Sometimes I even manage to walk or run on the treadmill one other time a week.  And I can work part-time as an educational consultant and tutor for a couple families in the area.  Grant and I pretty much have no limitations because of my POTS, and we now know how to handle any of my episodes that might pop up.  We’ve even gotten pretty good about looking ahead at our schedule to figure out how to prevent potential POTS episodes.

The hardest part of this whole experience was getting the correct diagnosis.  Up until that point, it felt like my illness defined me.  It impacted nearly every aspect of my life and was a constant issue.  However, now that we know I have Postural Orthostatic Tachycardia Syndrome I can be defined by lots of other things.  With a correct diagnosis, I have been able to seek appropriate treatments that have made a positive impact on my life and make accommodations so that my illness does not take away from my quality of life.  The reality is that POTS is something I will have for the rest of my life.  And although there will be points my symptoms will get better and times when they will be worse; it is never going away.  But that’s ok.  Because now I know how to manage my illness and can live my life.

Disclaimer:  While I am sharing information I have researched, read about, and found to be helpful myself, I am not a doctor and all decisions regarding your own personal treatment should be discussed with your own doctors.  Remember, I am just a patient.

Happy Birthday Gordon!

Gordon is 21 today!!!  

I can't believe my baby (only) brother is so grown up! 
And has already been accepted into an AMAZING law school.
I'm sure there will be many more acceptances to come!


Grant and I are SO bummed that we can't be in LA 
to celebrate with Mom, Dad, and Caroline. 
Grant can't wait to be home so they can wear 
matching outfits and play golf (or at least ride around in golf carts!).



We miss being home with the family 
and can't wait until we are home for the holidays!!

We will definitely celebrate this birthday then!

We're pretty competitive.
Family Games 2012...get ready!

October 29, 2012

Giants Win the World Series!!!


Posey for President shirts have been a staple in our house this month (Thanks Mom!)

Very excited the San Francisco Giants SWEPT the World Series!

Day 29: POTS is Not Rare, It's Rarely Diagnosed



 dysautonomia pots - Google Search

Spread the facts.  Create awareness.  Help people find the correct diagnosis.

Disclaimer: While I am sharing information I have researched, read about, and found to be helpful myself, I am not a doctor and all decisions regarding your own personal treatment should be discussed with your own doctors.  Remember, I am just a patient.

October 28, 2012

Sunday Social

Sunday Social


1. What was your favorite Halloween costume as a kid? Cinderella or Dorothy.

2. If you could go back and dress up as something what would it be? Nothing--I HATE Halloween and just want it to be November first.

3. Favorite costume as an adult:  Claire Dunphy (2011)  Last year Grant and I went as the Dunphy's from the Back to School episode.  Definitely one of my all time favorite costumes.



4. Favorite Halloween Candy: 3 Musketeers.  Obviously I can't eat them so Grant has to eat them for me.

5. Favorite Halloween Memory: Probably last year with Grant! He makes a great Phil Dunphy.  Although I did win the costume contest in 4th grade for being a picnic table...

6. What's your favorite scary movie? Don't have one--I HATE scary movies.

Day 28: If I Looked as Bad as I Feel I Would Scare Your Children...


What does it mean to have an invisible illness?  

 It means that no one can see how sick you really feel.  
 It means that bad days can look like good days.   
It means that it can seem like you are picking and choosing what you want to do, while using your illness as an excuse.   

But for someone with an invisible illness, 
it means constantly fighting an uphill battle.   
It means we have to talk about our illness more 
because no one can see it. 

 Awareness is key to finding a cure (or in this case, all the causes too!).  
 Spread awareness.  Have a conversation with someone.   
Support those who are sick, 
even though you may not be able to see how sick they truly are.

There is a website dedicated to invisible illness week: www.invisibleillnessweek.com
This year the week was observed from September 10th to the 16th.  
I wrote about it here.

“Be kind, for everyone you meet is fighting a hard battle”

Disclaimer: While I am sharing information I have researched, read about, and found to be helpful myself, I am not a doctor and all decisions regarding your own personal treatment should be discussed with your own doctors.  Remember, I am just a patient.

October 27, 2012

Day 27: My Beautiful Wife and the Nagging Insurance Company POTS

***I knew that I wanted to have a post about 
what it is like to be married to someone with POTS.  
But that meant convincing Grant to write a blog post...
and I am pleased to announce that this is 
the FIRST EVER POST BY GRANT!***

Kingsley has asked me to write on this blog many times, and I really wasn’t interested. However, when Kingsley said she wanted me to write during Dysautonomia Awareness Month and what it’s like to be married to someone with POTS, I thought it was a fine time to make my debut onto the blogging scene. Although cliché, it won’t hold me back from saying I’m the luckiest man in the world who is married to the sweetest gal.  She is the total package: kind, fun, sweet, good looking, loving, and… un-characteristically relaxed due to POTS.

POTS is like the insurance company that always calls during family dinner to tell you about a new fee. POTS likes to call at the most inconvenient time and tell you news you 1) don’t care to hear and 2) news that never positively affects you. It’s the insurance company that has your cell phone number, so it can reach you anywhere, at any time. The company’s employees operate 24 hours a day and love to interrupt a busy or important day-- more so than the days you maybe planned to receive a call. It’s a provider you can’t drop, and a company who’s loyal for life. Whether we like it or not.

My wife and I have been working around POTS now for over two years. It was one of those diagnoses that the docs just couldn’t figure out. There were some tough hours, days, and months; but I married a tough woman. I am currently an Infantry officer in the US Army and I can say without a doubt my wife is stronger physically and mentally than I am. It’s one thing to walk 20 miles with 70 pounds on your back in freezing temperatures, but it’s another to struggle daily with a body who tells you, “no I’m not getting out of bed.” Somehow, she manages to tutor students with special needs multiple hours a day, keep a clean house, cook excellent meals, and maintain our social calendar. To manage all that with POTS proves she is physically and mentally stronger than I could ever be.

Although I hate our insurance company POTS, it has taught me a lot. I’ve learned that I can complain to my wife about long days, which she will listen to like a great friend, fully knowing that her day has been longer and harder than I will ever know. I’ve fully embraced the family room sofa as a place to spend an entire day. The funny thing about spending an entire day on the sofa is when we muster up the strength to move to the bed at the end of the day, it’s never a day wasted. Please don’t think I’m trivializing POTS, it’s a bitch, but it has allowed Kingsley and I to focus on spending countless hours talking to each other. POTS has taught me more about appreciating the smaller things in life, more so than the Army has. One example is grocery shopping. Kingsley and I did a year apart when I was in training down at Fort Benning. She flew 50,000 miles that year to come and spend weekends with me. We used to joke how our favorite activity was grocery shopping because it made us feel like a normal couple. (How she ever flew that much with POTS I will never know) Knowing what I know now about POTS, with grocery shopping generally being a big outing, it’s still one of my favorite things to do with her. It lets me feel normal, I know everyone does it, but watching her hustle around the grocery store allows me to forget about POTS.

POTS changed our pace of life, but not necessarily in a bad way. It has… forced us to spend hours at home together, either in bed or on the sofa, and spend quality time most people take for granted. It has made outings like the grocery store fun and made me appreciate the times when we go out to see shows like Wicked and POTS forgets to call. POTS has made our planning superb, and our teamwork one to rival professional sports teams. I hate POTS, but it’s a condition that allows me to show my wife the love she deserves. And I still pray for a day when POTS stops calling, so my wife can enjoy bigger outings, like skydiving.

October 26, 2012

Day 26: You Know You Have POTS When...

I’ve written several posts about Jodi Epstein Rhum’s book POTS-Together We Stand: Riding the Waves of Dysautonomia.  

POTS - Together We Stand: Riding the Waves of Dysautonomia

You can check out a couple of my posts here and here.  

If you don’t have it, order it right now. One of my favorite sections of her book is entitled “You Know You Have POTS when…”  There’s something comforting in knowing that there is a whole group of people who understand this list with me.

Here is my top 10 list from her book:

1. Your blood actually obeys the laws of gravity.

2. You can use your hands (or feet) for your very own personal ice pack.

3. You know more about your condition than most medical doctors you see.   
You often have to explain it to them.

4. You are the youngest person at your cardiologist’s officer 
and yet you seem to be breathing the hardest.

5. You are the healthiest looking sick person. 
You are an oxymoron.

6. You have to cancel more plans than a politician makes promises.

7. You have seen every type of doctor whose names ends in “ologist”.

8. You are incredibly strong 
but often cannot open up your own water bottle.

9. Your body can gauge the weather 
more accurately than the meteorologist.

10. You can sit with the old men at the back of the church/temple
 and discuss beta-blockers and chest pains.

Check out her book to see the complete list!

How do you know you have POTS?

Disclaimer: While I am sharing information I have researched, read about, and found to be helpful myself, I am not a doctor and all decisions regarding your own personal treatment should be discussed with your own doctors.  Remember, I am just a patient.

October 25, 2012

Day 25: Keep Communicating- be clear, be constant.

I have a health problem.  POTS is most likely never going to go away.

I HAVE to tell the people I keep in my life about it.  Not because I want attention, but because I need them to know what to do if something happens.  Just like I have to tell people what I’m allergic to if I plan on sharing a meal with them.

Neither issue become a big deal if I manage it and let people know ahead of time. 

And then of course, there is the dreaded doctor who has never heard of POTS and is bold enough to google it while you're sitting in the room.  (We've all had this experience!)  And it's frustrating, and sometimes (most of the time) I want to punch that doctor in the face.  But I ammmmm glad that he's learning about POTS.  And I have no problem explaining it to him.  And I'm even happier when he reads about POTS and then refers me to a doctor who has actually treated it before.

But that's how life with POTS go.  We have to keep communicating, so that someday, all doctors know about POTS and it is not something our friends have to worry about.

How do you keep communicating?

Disclaimer: While I am sharing information I have researched, read about, and found to be helpful myself, I am not a doctor and all decisions regarding your own personal treatment should be discussed with your own doctors.  Remember, I am just a patient.

October 24, 2012

Day 24: What Can You Do?

Ok, so you're reading this post, but you don't have POTS or any form of dysautonomia...what can you do for your friends that do?

Just be there.  Be supportive.  Listen.  Offer to help when appropriate.

One of the things I hear the most from people with invisible illnesses (other than that people don't believe them!) is that people sometimes don't know what to say to them.  The Invisible Illness Week website has lots of great awareness and support material, but these were some of my favorites.
iisay011 I Care About You Important For Ill Friend To Hear
iisay04 Its Okay to Cry Are Precious Words To Ill Friend
iisay11 I Will Listen Is A Special Gift For Friend With Illness

Click on the image and resource link below each photo to see the source and read the article that explains more about what to say to an ill friend.
If you like these and want to see more, click here.


Disclaimer: While I am sharing information I have researched, read about, and found to be helpful myself, I am not a doctor and all decisions regarding your own personal treatment should be discussed with your own doctors.  Remember, I am just a patient.

October 23, 2012

Day 23: Stay at Home Date Ideas

Sometimes POTS shows up and we have to stay at home. 

Here are our top 5 go-to stay at home date ideas:

1. Homemade pizza and a movie

Grant loves pizza.  It’s probably his favorite food.  Along with candy bars.  But I can’t have dairy so that limits our ability to ever order pizza.  We stock up on Trader Joe’s ready to bake pizza dough and I make a big batch of tomato sauce every 6 months.  So when we feel like pizza we just pull them out of the freezer and each make our own.  I cook mine first so that we don’t have any allergy issues in the oven.  And we end up with pizza for the next few meals!  Pizza and a movie is a great date night in or out of the house.

2. Trashy TV Nights

I love trashy reality tv.  LOVE IT.  And Grant is a really great sport.  We definitely have our list of shows that we watch every week.  But sometimes, Grant will even watch one of his least favorite with me if I’m really whiny and not feeling well.  Our most recent example: The RHONJ reunion show.  He doesn’t understand how I can watch a show where the women are constantly screaming over one another.  However, he did get slightly interested when Rosie threatened to kill Theresa and Joe got asked about the alleged cheating…

3. Wii

I have a love-hate relationship with our wii.  It’s great when Grant and I want to have a night in or when we’re entertaining.  However, if my POTS is really being a pain in my @$$ then it’s a little problematic—so play this one by ear.  But it’s fun, sometimes you get a little exercise, and always brings out our competitive sides!

4. Puzzles

Grant and I love puzzles.  We discovered they were a common interest shortly after we moved to Tennessee.  They are perfect for a rainy day, or just a day when I’m feeling under the weather.  We tend to finish puzzles quickly because we’re both so type A we hate to see an unfinished puzzle sitting on the coffee table.

5. Music and hot drinks

We both like the same music.  Well actually, I like the music Grant likes.  Sometimes he likes the music I like.  SOMETIMES.  We both actually love our Keurig too.  I love peppermint tea and he loves the chai latte and apple cider.  On more than one occasion we’ll turn on the keurig, put on some music, and then wake up several hours later with the music still on and our drinks now cold.

What are your go-to stay at home date ideas?

Disclaimer: While I am sharing information I have researched, read about, and found to be helpful myself, I am not a doctor and all decisions regarding your own personal treatment should be discussed with your own doctors.  Remember, I am just a patient.

October 22, 2012

Day 22: Change of Plans

Grant and I both planners.  We were planning out our future together on date 3.  I like knowing what we want out of life and how we plan to get there.  But with POTS, we’ve had to become a lot more flexible with these plans.  The long term plans have stayed the same.  But our day to day plans often change by the hour.

Sometimes, I have to cancel.  I hate being THAT girl cancelling plans.  But I would rather be THAT girl cancelling plans than THAT girl passing out at the mall because she didn’t cancel her plans.  Sometimes it means sleeping through boot camp because I was up all night.  Sometimes it means rescheduling dinner plans because I just don’t have the energy to go out.

I’ve gotten a lot better about not over-extending myself so I have to cancel less and less.  I like to think I now have a better understanding of how much energy is going to be required to complete a task.  I only have so much energy to give.  With POTS, I go from functioning to literally being so tired I can’t get out of bed.  There’s not really a fine line, and if there is, it’s made out of clear fishing line.

But let’s be clear, I don’t ever cancel because I want to, I cancel because I have to.

How do you handle making plans with POTS?

Disclaimer: While I am sharing information I have researched, read about, and found to be helpful myself, I am not a doctor and all decisions regarding your own personal treatment should be discussed with your own doctors.  Remember, I am just a patient.

October 21, 2012

Sunday Social

Sunday Social

1. What do you value the most in life?

My family.  They are the best people I know and I don't know what I would do without them!

2. What do you think is the greatest invention in your lifetime and why?

The internet. (I realize it was developed earlier, but it wasn't readily available to the public until the 1990's!)  It allows us to learn so much more, faster and it helps with all the people I miss from home!

3. What do you think is the secret to a good life?

Happiness.  Spend time with people that make you happy.  Do what makes you happy.

4. What would you most like to be remembered for when you're gone?

Having a positive impact on all those I've spent time with.

5. What accomplishment in your life are you most proud of?

Getting hired as a special education teacher at our former high school.  I didn't even have my credential yet and it was the only position I wanted.

6. If a movie was made about your life, who would you want to play you?

Reese Witherspoon.  LOVE her.

Day 21: Finding Support-Research Organizations

Sometimes, it's hard to find someone who understand what you're going through.  But I hope that these resources can connect with people who just might understand what you're going through and are working to find successful treatment plans (and maybe one day a CURE!).

Dysautonomia/POTS Organizations:
Dysautonomia SOS
Dysautonomia Youth Network of America
National Dysautonomia Research Foundation

If you know of an organization that is not listed here, please add it in the comment section below!

Disclaimer: While I am sharing information I have researched, read about, and found to be helpful myself, I am not a doctor and all decisions regarding your own personal treatment should be discussed with your own doctors.  Remember, I am just a patient.

October 20, 2012

Day 20: Remembering to Take Those Darn Pills...

Life with a chronic illness often times requires medication on a daily basis.  I’m really great about remembering to take my beta-blocker in the morning.  I have my routine—eat breakfast, take my medicine, get ready for the day.  And at night, our routine is pretty standard too – eat dinner, I take my beta-blocker, and Grant does the dishes.

However, on more than one occasion, Grant will shout at me—Beta Blocker! And I have to jump up to take it.  Or, a couple of times, we’ve been in the car to church, or I’ve been on my way to Boot Camp, and had to turn around to go home and take my medicine.

Remembering is such a key part of my POTS management plan.  But it becomes second nature that sometimes I have to remind myself to be conscious about remembering to take my medicine.

There are lots of ways to remind yourself:

- Set your medications by the bathroom sink so you take them when you brush your teeth in the morning and at night.

- Set your medications wherever you eat your meals if you take them at mealtime.

- Use a weekly pill organizer or checklist so you know when it’s been taken!

- A certain closeeee friend used to have a blaring alarm on her phone as a birth control reminder…

How do you remember to take your medicine each day?

Disclaimer: While I am sharing information I have researched, read about, and found to be helpful myself, I am not a doctor and all decisions regarding your own personal treatment should be discussed with your own doctors.  Remember, I am just a patient.

October 19, 2012

Day 19: That One Guy From The Wiggles...


 

 Ok, even if you aren't a Wiggles fan you should read this blog post..

Did anyone see the April 2, 2012 issue of People magazine? Well you should check it out because there's an article about the Yellow Wiggle, Greg Page. He was sick for a while and actually had to take a five year break from the Wiggles because he was so sick. Doctors finally diagnosed him as having Orthostatic Intolerance which is very similar/basically the same thing as my diagnosis of Postural Orthostatic Tachycardia Syndrome. If you're interested, here's the press release the Wiggles released November 30, 2006 announcing his leave. Who knew?!  This invisible illness impacts the lives of so many people.  I think it's really great when people who are public figures are able to speak up, and speak out to bring awareness.  Here's the press release the Wiggles released January 18, 2012 announcing Greg's return to the group.

Greg writes about his experience on the Dysautonomia Youth Network of America Website here.

I previously discussed this topic on March 26, 2012.

Disclaimer: While I am sharing information I have researched, read about, and found to be helpful myself, I am not a doctor and all decisions regarding your own personal treatment should be discussed with your own doctors.  Remember, I am just a patient.

October 18, 2012

Day 18: POTS and Exercise

In August, I wrote a post about a new purchase…
 

The Polar FT4F Heart Rate Monitor and Watch.  

I know it looks purple online; but I was pleasantly surprised that it is actually bright pink in real life!  It completely tracks everything during my work out and allows me to feel safe while working out.  No more worrying about my POTS creeping up on me.

Now that I have been using it for over two months, I can say that I continue to be impressed with it.  Although I wouldn't use it as a doctor (I still think their machines are more accurate...), it is perfect for what I need for my own personal use while working out.  Having POTS, I am very aware of my heart rate and can tell you the instant it starts to go up or down (if I am listening to my body that day).  But once my medication dosage was figured out and I was feeling better, I was still having anxiety about working out.  I had talked to my cardiologist, and he had given me my guidelines.  For my body and my POTS, I can work out as long as my heart rate does not go above 160 and I am drinking water and GATORADE throughout the workout.  You can read about my relationship with gatorade here.  Even with these guidelines, I was still nervous, the jump from 158 to 160 may seem minute, but for somewhat with POTS it can make the difference between completing a workout or ending up passed out on the floor.  Wearing my heart rate monitor let's me work out safely because I can watch my heart rate closely, monitor my calories burned, and still get a great work out.

I also have a finger monitor that I use at home.

 Concord BlackOx Fingertip Pulse Oximeter with Carrying Case

This isn't my exact model, but they are all pretty much the same.  Grant and I originally purchased an oximeter for help with my food allergies (remember that post from Day 10).  I HATE going to the emergency room.  And I REALLY HATE dealing with ER doctors about my food allergies.  Like POTS, food allergies are not well understood by most doctors.  They think you are having a panic attack, they think you can't be allergic to things like garlic, and they sometimes think you can wait in the waiting room to be seen...

With the percentage of oxygen in my blood measured on this device, we have been able to avoid hospital visits as long as I have high enough oxygen levels in my body and high doses of zyrtec kick in.  Please note that my awesome allergist DOES NOT RECOMMEND this course of action.  He would tell me to use my epi-pen and go to the ER immediately.

However, the meter also comes in hand when I feel my heart rate start to change and need to watch it for a little while.

If you have POTS, or another condition where tachycardia occurs, I would recommend getting at least one type of heart rate monitor.

Are you able to exercise?  And if so, how do you monitor your POTS while exercising?

Disclaimer: While I am sharing information I have researched, read about, and found to be helpful myself, I am not a doctor and all decisions regarding your own personal treatment should be discussed with your own doctors.  Remember, I am just a patient.

October 17, 2012

Day 17: The Power of Prayer

Sometimes all you can do is pray.  Sometimes the doctors can’t figure it out.  And none of the research seems to match your symptoms.  And even WedMD and Wikipedia don’t have any ideas. 

This overwhelming feeling of hopelessness tends to come at night when I’m the most tired and everything is aching.  We’ve had nights when nothing we can think of seems to make me feel better.  Nights where Grant has to get up earlier than usual for work and really needs sleep.  And even nights where the on call cardiologist is only filled with ridiculous suggestions that make no sense at all.  All you can do is pray that morning comes quickly and that God will take care of the rest.

Disclaimer: While I am sharing information I have researched, read about, and found to be helpful myself, I am not a doctor and all decisions regarding your own personal treatment should be discussed with your own doctors.  Remember, I am just a patient.

October 16, 2012

You know your relationship is in trouble if...

...you have to post this on Craigslist.


Thank you Clarksville.

Day 16: Staying Open to Living Outside of the Box

This sounds like a simple thing.  But we live in a world where western, modern medicine is mainstream and our go-to.  And that’s what I’m comfortable with.

When my primary care in Clarksville first sent me to the Integrative Health Center at Vanderbilt, I was more than a little hesitant to go.  But at that point, I was willing to try anything.

So off I went to try supplements, new diets, pool therapy, health psychology, and even a witch doctor.  Ok, she wasn’t really a witch doctor.  But she dealt with ions and tapping to measure the levels of x, y and z in your body.  I made Paige go with me and we both had to hold back the chuckles at multiple points.  She thought I had chronic lyme disease.  From what I’ve heard, this seems to be the diagnosis everyone gets from her.  But it was an experience and something else to check off the list.

It was my experience as a patient at the Integrative Health Center that led me to the correct diagnosis.  So I’ll chalk this one up as a success.

What have you been willing to try to feel better?

Disclaimer: While I am sharing information I have researched, read about, and found to be helpful myself, I am not a doctor and all decisions regarding your own personal treatment should be discussed with your own doctors.  Remember, I am just a patient.
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