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!

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. 

On days like today lyrics keep me going... Maybe they'll help you too...

It’s an uphill climb 
But it’s all you know
So you spin your wheels
And dig your heels and down you go 

So predictable
But it’s not your fault
How can you expect to do your best
When you’re scared to fall

Cause the pain is real
But you will survive
That’s how you know you’re alive

Cause it’s Okay Now, Hey Now
You can let go
That’s when you 
Find out, Find out
Everybody knows
That there just 
Aint no, Aint no
Easier way out
I know it might not look that way
But You’re gonna live to fight another day
 - Brandon Heath "Fight Another Day"


I'm not really into Christian music, but he came to my school and I really like his music. His lyrics are hit and miss, but this song is great!

Been a while, which is good, but...

So I had been doing well. Well, POTS wise at least. I developed migraines which we are testing for and seeing a neurologist for (apparently a normal sign of POTS). I am taking Imatrex for the bad ones which is very helpful, but I just started Topamax to try to prevent them (verdict is still out on that). I basically have a headache everyday of whatever level which is manageable, but sucks.

As icky as it is to talk about, for those of you who have POTS who read this, I feel I should mention that my body temp issues are out of control right now. Not sure if its the weather or what, but if you are experiencing the same thing, ur not alone. Hot flashes are in full swing in fall!

I'm getting a serious case of the stir crazies... I haven't left the house for anything other than doctors with the one exception of a few hours last Saturday for a wonderful apple and pumpkin picking trip. I am very glad I got to do that since I don't think I'll be able to do any of the other things I wanted to do this fall and most of them have an end date. The PA Renn Faire, Pennhurst Asylum Haunted House (friends work here), Eastern State Penn Haunted House (I used to work here), The Mummy Exhibit at the Franklin Institute, to name the tops on the list. I was supposed to go to two of them this weekend, but no one wanted to go with me. That seems to be a new issue for me, I feel like going out, but don't feel up to going out alone, and no one wants to or has time to do things with me. Go figure, people have lives. :op

Well here are a few pics from my day with the apples and pumpkins. :)

 Riding to the orchard... 

ps. Can you tell I was having a hot flash? A tank top on a 56 degree day? ha!

And the orchard...

5:54... I would rather be sleeping...

So its almost 6am and I can't sleep. I am in very bad pain (probably because changing weather due to it becoming fall and rain). I have tried tylenol, tramadol, heating pads, massage, relaxation techniques, meditation, tai chi (although I only remember about 3 min of it), hot camomile tea, a warm shower, and nothing is working. I now have taking my sleeping pill 6 hours ago, so soon it will be wearing off. This is one of those things that is frustrating about my sickness. I have chronic sleeping problems, but pills don't seem to help some days (like today). Does anyone else have problems sleeping with POTS? Any ideas? Is anyone even reading these?

Frustrations

Today when I explained to an acquaintance why I wasn't working or going to school, he said something that threw me for a loop. He said "oh, so you're basically on an extended vacation?" I didn't know what to say...

No, this isn't a vacation. I don't wish to be living like this. I want nothing more than to have my life back, to have my body stop betraying me, to be able to be a normal 26 year old again. This isn't fun for me. I have a disease that is incurable, unpredictable, and disabling. No its not something that you can see, but that doesn't mean that it isn't there. I have good days and bad days. But the fact is, I have barely left my room, much less the house in the past few months. When I do get out, more often than not, I need to go home before I want because I feel so bad. I don't like hearing friends telling me about all the fun things they're doing out in the world while all I can do is sit in bed sipping ginger ale to help my stomach and watching reruns of Bones on Hulu because there isn't anything else I can do. Its not a vacation when you are put through countless medical tests in an attempt to make you better, most of which being uncomfortable and unpleasant. Its not a vacation when on a good day your pain is at a 3, you only feel like you're going to pass out a few times, and you manage to stand for a whole grocery or restaurant trip before collapsing in bed to recover. I feel like the time in my life is flying by, while I'm stuck in place. I have been missing out on things and falling behind for two years. I want to catch up. I want to be working, I loved my job. I want to be in school, I really was doing well and enjoying my classes. I want to go out with my friends. I want to be me again. I want this to all stop. So no, this is not a vacation. 

Hurricanes, and earthquakes, and NOLA! Oh My!

So I know its been a while since I posted anything. I went on a vacation, came back, got the house ready for out of town visitors (who never made it), got the house ready for a hurricane (that did make it), catching up with friends, and have very little to report other than that.

I went to New Orleans to visit my family. It was a great, very relaxing visit. Lots of floating in my Nannan's pool and sitting around a table and chatting. One not so surprising benefit of the trip is that all the salty NOLA food raised my BP enough that I didn't need my mitodrine! Unfortunately, since coming back, I have had to go back on it though. The drive to and from NOLA wasn't as bad as I had thought it would be. My sister and I split the driving, with her taking the bulk of it. We spread the 26 hour trip into 3 days, with plenty of stops. I made sure that I drank a TON of water and gatorade pouches, ate salty food, and kept my protein up, and it was fine. To those of you with POTS who were like me and afraid to take a road trip, I would suggest you try it, just be prepared. You know your body, you know what it needs, but staying close to home all the time out of fear is no way to live.
On the trip, I discovered that my sunscreen allergy was indeed real, as may be allergies to berries and bananas. I saw an allergist who is doing tests to see. He said that new and worsened allergies are a normal part of dysautonomia since the autonomic nervous system controls it all somehow. Oh good, one more thing to add to the list of malfunctioning parts. :op
After NOLA, we got home to a messy (post trip packing) house that needed to be cleaned for a visit from two relatives. It took us 3 days to make the house clean enough to be acceptable, and then Hurricane Irene decided to hit us. We stocked up on the typical items (batteries, food, water in tupperware containers, flashlights, and prescriptions), and prepared to hunker down through the storm. Needless to say, the relatives who were set to visit didn't make it here, they stayed where they were. In the storm, we lost a tree, and had yard flooding, but were very lucky that nothing worse happened. At one point, the storm was so bad that my mom had us go pack bags for a shelter if we needed to leave. At another point, there was a tornado warning for our area, so we all sat in the basement stairwell with our dog for 45 minutes. It was scary, but nothing horrible.
After the hurricane, I spent some time just me, alone, in my room. I didn't feel well, didn't want to go out, be social, or anything else. Probably depression had something to do with it. It is very easy to get discouraged with POTS, your body dictates your life and limits the things you can do with it. I get very frustrated by the new limitations my body has set for me. While I am doing much better than I was last summer, I still can't lift heavy objects, do any kind of cardio, or stand for too long. But my Mom got me out of bed a few times, luring me with dinners at my favorite restaurants or visits to craft stores. My friend Camo got me to go to a small faire with him and his two daughters, it was a great time! I did have a little bit of trouble keeping up, and at one point, I felt faint, but I took a pill, drank some more water, and the feeling went away. After the faire, we went to a little vegan chinese buffet that surprised me. It was really good! I'm still new to the whole vegan food thing, so the idea of eating a meatball with no meat, or sweet and sour tofu still throws me off a bit. But I have found that more often than not, I enjoy the meat alternatives if they're not overcooked. I am also noticing that with the vegetarian diet, by bp stays higher and I feel slightly healthier. While I had a great time out, a full day with two very excited kids in 80 degree heat was about all I could do. My bed was oh so welcoming when I got home, I slept for 14 hours straight! The day before yesterday I went to another friend's house for a craft night. I had to cut out fabric for my sister, and she was drawing for her upcoming art show. I was over there for a while, and once 9pm rolled around, I was starting to get tired, I should have left then, but I waited until after she and I made dessert (my chocolate crescent rolls from my food blog). By the time I left, it was 10pm. I didn't realize the road home was under construction at night, and so I ended up being put on a detour that led me all around the city in a roundabout way, and didn't have a clue where I was. I finally made it home around 11, and really shouldn't have still been on the road, lesson learned, leave when I start getting tired.
For 7 weeks now, I've had a sinus infection that won't go away. I've been on 6 weeks of antibiotics, 3 weeks of prednisone, and countless sinus pills. My allergist and GP seem to think it may be a fungal infection, I hope not, that would mean surgery. I have gotten the all clear to go back to work, but not until I get the sinus condition out of the way, so I'm really hoping its going to go away. I have a CT in 2 weeks when I'm done with this round of antibiotics, so we'll see. Crossing my fingers that I can go back to work in October! Wish me luck!

Walk it out...

Its funny how some days I can walk around the lake and other days I can just barely make it to the mailbox. I guess I just need to make those good days count. Today Lexi and I made it to the mailbox and back three times! Quite proud of myself. :) I also have been using my baby 2 lb free weights in bed to try to get my arms stronger. So far I'm not counting reps, just using them until my arms hurt. But I feel like even just a little bit is still more than nothing! Just make the little things count. Walking up the stairs, walking around the grocery, standing to cook. It all adds up. 


I took this picture of a butterfly this spring with my iPhone 4. It makes me smile, hope it makes you smile too. :D

I saw this on another person's blog and thought I'd pass it on...

Invisible diseases. What can I do to help myself feel better?

Because symptoms vary among these Invisible Diseases, and each person reacts differently, it is impossible to have one straight answer for everyone. However, there are some general adjustments that many people have found to help them. Of course, check with your doctor before making any changes to your daily habits and health regulations.

1. Many people have found that a low carbohydrate (not NO carb) diet has helped tremendously. The regulation of blood sugar is important for the body in general. An easy rule of thumb is to stay away from simple and refined flours and sugars. In other words, avoid most of the white powdery substances in food. More complex carbs like whole grain and whole wheat tend to help people digest slower and gentler than processed carbs.
2. Probiotics can help to balance digestion and infection regulation. You can find probiotics (such as Acidophilus) at health food stores and online.
3. Temperature regulation seems to be very important for most people with these Invisible Diseases. The body is so very sensitive to changes when a person has an Invisible Disease. So, try to avoid extreme hot or extreme cold.
4. Drink tons of water! Two to four liters per day is generally recommended due to the common problem of low blood volume and blood pressure issues that so often occur among people with Invisible Diseases. This can make a much bigger impact than you realize. It can also help with dizziness and nausea in many cases, due to the constant dehydration in the body.
5. Listen to beautiful music and uplifting entertainment. Believe it or not, music has shown to effect our bodies and overall health. Think about it, when you hear loud screaming banging music, it causes a different internal reaction than if you listened to calm soothing classical sounds. The mood can be lifted with the right music and entertainment. Avoid harsh chaotic sounds and scary or depressing movies. Because Invisible Diseases cause brain fog, the effects of a simple scary movie can be quite impacting and lasting. This causes unnecessary stress on the body.
6. Laugh! Even if you have to force a little laugh out here and there just to get it going, just find some way to have a little laughter. Even watching a funny movie can help. Anything to brighten the mood is very helpful when you have such a sensitive body. Laughter causes physical movement as well, which ignites the lymphatic system. This benefits the immune system, so laughter really IS healing, on many levels.
7. Most importantly, do anything that you can to surround yourself with a supportive and loving group of people, including your doctors and nurses. This can be very difficult for some people, but please try any way that you can to find doctors who understand your Invisible Disease, or who are at least willing to learn about it. Of course, loving relationships in your daily life are essential as well. Reach out to others like you online, create friendships that way and share information. Always remember that there is hope! Keep hoping and knowing that people are working hard to help you, even if you cannot see it directly. Know that you are not alone and that people really care about you! 

Losing your marbles...

I saw this on the DYNA Kids website. While i'm not a kid, i think this is an excellent way to explain one of my frustrations with POTS. I guess I just like the marble analogy for how hard it is to balance all the things you do in a day and how much more effort everything takes when you have dysautonomia. 

"You may have heard of people with illness obtaining balance in life by "learning to live with a limited number of marbles in their jar." Let’s just pretend that you have a jar of marbles at the beginning of each day. In your jar you have 100 marbles. You use 25 marbles to get through your school work. You use 25 marbles in your friendships and relationships. You use another 25 marbles following your physician’s orders. It takes more marbles to perform all the activities necessary to manage your illness. We haven’t even listed the normal activities of daily living that you must do (bathing, cooking, chores, etc.). And well... by the time we get to your emotional needs, you probably have no marbles left to live with!

As time goes on you get tired of living on the edge with those darn marbles. They start rolling away on useless tasks, and next thing you know you have lost your marbles before the day even starts! No pun intended. You need to gather up your marbles and keep count of them and be selective about using them throughout the day. Save some for the party you may want to attend tomorrow or the friend you may want to invite over this weekend. And remember that assignment due on Friday! They are precious marbles you have in your possession – don’t lose them!"

Allergies

I'm not sure if anyone else deals with this problem, but my doctors say its a part of dysautonomia, so probably. I've developed a laundry list of allergies in the last few years.

Dietary Changes for POTS

So since we're running out of new ideas to get me feeling better, I'm trying a few changes in my diet. I already don't eat pork, but I'm also cutting out beef and chicken. I'm not becoming a full vegetarian since I will never be able to give up my New Orleans seafood, but I hope that by cutting out the meats that are full of antibiotics I can both help my health, animals, and the environment at the same time. A three birds with one stone effect. I love food, don't get me wrong, but its one thing I can take control of and be more empowered to take a more important role in my health. I've made a second blog about my adventures in foodieism (yes I made that word up). http://caitlinlovestoeat.blogspot.com is the site if anyone cares to see what happens. I'm not sure if anyone here is even reading this blog, but I plan to keep you up to date as to if the new diet helps at all with my dysautonomia or fibromyalgia. I started this blog both as an outlet for myself and to help those who were going through the same thing as me, I hope my mistakes and my successes that I put in here can help others with this disease to help themselves. There is hope out there, we just need to hold onto it and there will be a treatment that works (and maybe even a cure) out there for all of us.

Price I pay for a great Family Day!

Blood Pressure: 109/65
Heart Rate: 54

Today I feel like crap again. At least yesterday was fun. We went to the beach and (even though it was rainy and gross out) had an amazing time! I walked about a mile of boardwalk and splashed in the water for a little bit. I was a good girl and skipped the custard for a chocolate covered banana in my attempt to avoid dairy (mental note, the banana on a stick is very awkward to eat in public). And I pigged out on crabs and shrimp!  It was a great day, just now have to pay the price.

Setbacks.

On days like today, when I had plans to be with friends and have to cancel due to not feeling well, its hard to stay positive. But I just keep reminding myself that it could be worse. Tomorrow is the 26 year anniversary of my adoption. We call it "Family Day." This year we're going to Ocean City, MD for a family beach day to celebrate. Best case scenario, I have a fun filled day on the boardwalk and in the beach with my family and get to pig out on crabs. Worst case scenario, I lie on the beach all day and pig out on crabs anyway. But, a beach day with POTS isn't the same no matter how well it goes. I started hydrating today, need to wear my big floppy hat and slather on way more sunscreen than ever before, and I probably can't go into the water for too long or else my Raynaud's will act up. Again, I need to just stay positive and remind myself of the good things in life on those bad days. Crabs for dinner, beautiful beach views, and time with my family. Those are the things that really count.

Posts belated

I haven't been posting lately and for good reason. I'm doing a lot better on my new treatment! Florinef, B vitamins, Lunesta, Paxil, Midodrine. My cocktail of medications combined with high salt intake, high water intake, and more exercise has made a huge difference in how I feel and my abilities to function more normally. That coupled with the beautiful June weather and I haven't been spending too much time in bed with my computer. I don't know if anyone is actually reading these posts, but if someone is who has POTS, there is hope. I know it seems hopeless when you can barely get out of bed without passing out, when you feel like you can't do anything to get better, but don't lose hope. It is one thing we still have, no matter what! While I could stay here an write to you a post that seems like a song from a Broadway musical about not giving up hope, instead I'm going to go out in the sunshine and take a walk. Happy day to you!

The Dysautonomiacs Blog

I found this group tonight: http://thedysautonomiacs.blogspot.com/p/what-is-dysautonomia.html
Seems pretty cool. If you're interested in reading other blogs about dysautonomia, I recommend it.

Picture: Signs you're spending too much time in the house...

Breakthrough!

Ok, so in the last few weeks I've been seeing a "super" doctor over at Jefferson in Philly. He changed my meds around and it has made a HUGE difference. My blood pressure is much better, I'm not as dizzy, I haven't passed out (or even been near it). The only problems are that I am still exhausted all the time and I am very weak. My muscles have started to shrink in my legs, so I'm starting physical therapy at home to get my muscle mass back. Its hard, but I hope its worth it. Overall I feel better, but not well. Kind of feels like how you feel the day after you have a really tough workout and you haven't done much in a while. Very tired, weak, and hurt all over. Its not perfect, but its a step in the right direction, and therefore it gives me hope.

Being alive

Today I realized that I'll never be able to SCUBA dive again. Its something I love doing and its something I trained for a long time to earn the highest certification for. While this saddens me, I feel better when I remind myself that I DID SCUBA dive. I dove and I loved it. I'm glad I took that chance.


When I was growing up, I had chronic pain. I would stop playing with the other kids, come in from recess to the nurse at school, and be up late crying with my mom because my arms and legs hurt. For years the doctors said it was just growing pains and that I'd grow out of it. They said I was "overly dramatic" and that I "exaggerated" the extent of my pain. It wasn't until I was 11 that things changed. I went to the eye doctor with that I thought was a case of pink eye, that I was taken seriously. The eye problem I had wasn't pink eye, it was acute iritis. To explain it simply, my iris (the colored part of your eye) was swelling, a problem linked to a group of genetic disorders on the gene HLA-B27. From there I went to a specialist for tests to see what caused the iritis and what was causing my pain. At the time, I was misdiagnosed with something called Ankylosing Spondylitis (AS). AS is a disease which causes pain, but causes calcification to form over the swelling (mostly in the spine). I was told that my spine would fuse together and I would likely be in a wheelchair. I was given medications and lifestyle changes to follow in order to prevent permanent damage from happening. Like anyone else in this situation, I was scared. 


At first, my reaction was a strange mix of anger and disbelief, I would take my frustrations out on others and didn't handle it well. Then I realized that I had a blessing in disguise. While I may be confined to a wheelchair in the future, I had the time in the meanwhile to take advantage of. It was this realization that led me to do many of the things I did growing up. I was in 7 choirs, countless plays and performances, and was an active member of many student organizations. When I was a senior in high school, I decided I wanted to learn how to SCUBA dive. At the same time, I realized that I had only been to one overnight camp in my life and wanted that experience as well. I found Odyssey Expeditions. Odyssey was a summer month long SCUBA camp in the Caribbean. I ended up going two years in a row and earning my Master SCUBA Diver Certification from PADI. Years later the diagnosis was corrected to be fibromyalgia, which is good, because there is no permanent damage involved with the pain I feel. 




In the years since that misdiagnosis, have experienced things in that I treasure very dearly. I studied in Sevilla, Spain for a month when I was a freshman in college. I went to Mardi Gras parades more times than I can count. I fished on a dock with my Grampa and caught a big one. I climbed the Great Wall, saw the Taj, visited the Pyramids of Giza, and walked through rush hour in Tokyo. I literally circumnavigated the globe on a ship. I've loved and been loved and had my heart broken. I've slept outside in a tent for a summer and cooked on a campfire. I've eaten foods without knowing what they are and things I never thought I would be able to stomach (and liked it!). I've seen a play on Broadway, a symphony in Spain, and a rock concert at the Magic Kingdom. I've been on 6 week long roadtrips with my family (and yes, we saw the landfill of the Great Dysmal Swamp). I've had a jobs I love for companies I believe in. I've helped raise over $250,000 for charity. I've done all of this because I never want to regret not doing something while I could. Like Mark Twain said, "twenty years from now you will be more disappointed by the things that you didn't do than the ones you do." I've lived by those words. So now, when my health is failing me yet again, I know I have no regrets that I didn't do the things I wanted to do. I did the things I wanted to, I lived, I experienced life to its fullest. So now, if I find that I don't ever get better from POTS, I know that I've still done so many wonderful things. 


I have many years left, I'm not done. Not even close. I fully intend on continuing to travel, while going 8 hours into the rural mountains of Vietnam may be off the table from now on, I can still travel to places that are new. I guess I'm just going to have to find my new adventures. New ways to get that "adrenaline high". But no matter what restrictions life throws at me, I'll never stop trying to find the loopholes and experiencing life. I plan on living, not just being alive.