Things I've Learned This Year

1. Hard work sucks, but gets you to where you want to go.
2. People will not always be there for you. You just have to find the ones who are worth your time, energy, and effort.
3. POTS will only define me if I let it.
4. Makeup is more than a concealer of blemishes.
5. A negative attitude will get you nowhere.
6. People cannot always be trusted.
7. You must have fun and not worry about every little social norm or expectation. Let loose!
8. A good shoe makes all the difference.
9. Disappointments will happen, but never let it stop you from doing what you want to do.
10. Safety is first. Fun is second.
11. There are so many people out there with medical problems. I'm not the only one with hidden problems.
12. Surrounding yourself with drama is pointless.

When to Tell Someone about POTS

I met some really amazing people that I could see myself being friends with for the rest of forever! I'm so lucky. But, I haven't told them about POTS. I wish it were different, but, unfortunately, stigma is stigma. I don't want to be ashamed or feel embarrassed with having a medical condition, but I don't want to be judged or belittled. I don't want to be a liar, but I also don't want to have friendships or relationships end or for me to be discriminated in any sense. I wish I could just say that I have it and not have to worry about the consequences. Those are always stalking my thoughts. I have trust in the new people I choose to surround myself with, and they are such sweet, kind, caring, thoughtful people. I just don't want to screw everything up by disclosing or by choosing to not disclose and continue this sort of lie I'm living. Grr...I wish things weren't so complicated!!

"Feeling the need to hide symptoms is so key to what patients of all kinds of conditions have to face. We have to hide--don't let anybody see, don't let them think you're drunk, don't let them think you're incapable, don't let them think you're unstable, you're unsteady, you're flawed, you're devalued. Mask it. Hide it. Cover it up..." --Michael J. Fox

Empty Promises and the Promise of the Future

"An acre of performance is worth a whole world of promise".  ~William Dean Howells

I have learned this past year that friends might just be acquaintances and acquaintances might just use you. I have learned to not take promises so seriously because, more than likely, they will not be kept. The friends I thought I once had have proven to not care as much as I expected of them. The closeness I had with friends at college is now lost between distance and life. It is sad that the memories I had from college feel a bit different because of this change in closeness and friendship now. I will always have those memories, but I am sad to think that I will not always have those friends. I expected things to be different. I guess my expectations were too high. On the other hand, I have realized that I deserve better. I deserve to be surrounded by people who care about me as much as I care about them. I am slowly finding those people too. :)

On a brighter note, I have found my calling! I want to continue my education in the field of Naturopathic Medicine. I have found an amazing program that is rather close to home, and I can complete the entire program in about 4 years! This program will allow me to become a certified naturopathic physician. I want to be a physician that heals the whole body, not one that just helps individual symptoms. Naturopathic medicine allows me to do just that! I am very excited to visit the campus and learn even more about the program and faculty. My future is bright and I look forward to be able to one day help patients :)

As for me being the patient, I am feeling okay. I have some good days and bad days. The neurofeedback wasn't as effective as I had wished it to be. There was slight positive changes in irritability, but the noise sensitivity, fatigue, and brain fog are all still there. Slowly but surely I will get better somehow. The biofeedback is still effective (thank goodness!) so I have continued that protocol along with the Spark energy drink, which really does help. I am just so thankful to have my family supporting me through all of this. I have no idea what I would have done without them! :)

Clueless on What the Future Brings

It's been awhile since I've posted. Not too much has changed. I have started neurofeedback, particularly bipolar (both hemispheres of my brain) training that focuses on creating permanent changes in my brain. Hopefully this will help to decrease my brain fog and fatigue. That is the goal. I have also started some aromatherapy to help with the fatigue, brain fog, and bloating. So far, I think it has helped my bloating and fatigue a bit. I'm experimenting with different mixes such as peppermint with rosemary and also ylang ylang with frankincense. A little positive change is better than nothing!

As far grad school...that is being put on hold another year because of my excessive brain fog. Due to the fact that I cannot always think of what I want to say and the like, taking the GRE test (which is almost 5 hours long!!) will have to wait for now. I have taken a few open online courses that are free and that interest me. This has been a good training for more challenging tasks like the GRE.

Since I have decided not to take the GRE this year, this means that applying to grad school is out of the question this year also. This was a challenging decision I had to make because I didn't want to make a decision in the first place. I just assumed that my progress would continue in leaps and bounds. And I just didn't think to be a bit more realistic.

While deciding on what I'm going to do with grad school and such, I have really thought about changing things up from my dream career of being in neuroscience to something practical, realistic, and helpful in society...biofeedback and/or neurofeedback. Being a patient of biofeedback and neurofeedback programs has opened my eyes at the possibility of being in this field. It has the things I like about helping individuals AND has a neuroscience and alternative medicine view. It seems like a good fit! I have been looking into programs...most of which do not require the GRE!! So it just feels right to me...only time will tell what the best direction is for me. I must continue my neurofeedback sessions to decrease my brain fog and fatigue before I take the next step. All that I know is that my future will be bright :)

Invisible Disease Awareness Day is Coming Up!!!

June 6th is Invisible Disease Awareness Day! This is the day to spread as much awareness as possible. Tell your friends, family, neighbors, co-workers...everyone!! It is important to spread awareness because so many medical conditions, such as POTS, are glanced over and may not be taken seriously. Doctors need to realize that these conditions are real, and are not created by the patient. They are real symptoms with real effects on patients' lives.

If we spread more awareness, more research will get done. More patients will be properly diagnosed and given appropriate treatments. More patients won't have to live in fear of the unknown. More people will simply understand.

Spread awareness by posting on Facebook, handing out flyers or ribbons, and just talk! With more awareness comes more progress. Progress is what we need to help all of the individuals that are struggling with these "invisible" medical conditions. Share these videos and websites below! :)



Videos:

http://www.youtube.com/watch?v=iJ9bv7jx-Ls

http://www.youtube.com/watch?v=YQpAYCzGAC8

http://www.youtube.com/watch?v=fAlwBI9Kero



Websites:

http://www.dinet.org/pots_an_overview.htm

http://www.dynainc.org/

http://www.dynakids.org/Documents/Educating_the_Dysautonomia_Student.pdf

http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

http://www.steadyhealth.com/articles/Grades_of_orthostatic_intolerance_a81.html

Studying, Relaxing, and Hoping

My routine now consists of:
-studying for the GRE because I want to apply to graduate schools :)
-relaxing because my brain is overactive and needs to chill so that I feel better
-hoping that the jobs I applied to for the summer reply back to my application materials

Schools that I am looking into are ones that have well-rounded programs in neuroscience. I would love to major in neuroscience and develop a better understanding of the brain and body connection. It would be amazing if I could be accepted into a school that allows me to research more into the nervous system and the relationship it has to POTS. :)

I am hoping and wishing that I do well on the GRE test this summer when I decide to take it so that my options for choosing a school will not be so limited. The acceptance rates to some of the universities that I would love to be accepted to are so small, so if I could test well on the GRE, then my chances will (hopefully) be stronger. I am looking into applying to:

-Loyola University in Chicago
-Vanderbilt University in Nashville
-Rosalind Franklin University in North Chicago
-Northwestern University in Chicago
-Brown University in Rhode Island
-University of Wisconsin in Madison
-The Ohio State University in Columbus
-University of Michigan in Ann Arbor
-Duke University in North Carolina

I am very excited to be going through the process of applying to jobs and getting ready to apply to graduate programs! I did not think this would be possible last year...but thanks to the POTS Treatment Center, my mom who always motivates me, and the hard work, I will be able to reach new heights and accomplish new goals! :)

Quite a long time since I've updated...

Summa Cum Laude

Sorry for such the long wait for an update! I have been busy...graduating college!!! I graduated in December with my Bachelor of Science degree. I graduated Summa Cum Laude, which is amazing considering the long, difficult road it has been due to POTS. But, I made it. Honors and all! I am blessed! I was nominated for Homecoming Queen this past fall too. Although I did not win, I did represent my all-female residence hall as its Homecoming Queen! It was such an honor!

Not only did I graduate, but I also went to Dallas, Texas to the POTS Treatment Center in late February and again in April. It was an amazing experience!! Two weeks of following the program and training, and I was able to feel 75% better!!

I was nominated for Homecoming Queen too!

Because of the second time I went to Dallas, and the home portion of the program, I feel about 85% better now! I am not really POTSy anymore!!!! When I stand up, my heart rate is about 98 bpm, compared to the 165 bpm from the past!! It seems like magic! Through biofeedback, diet, exercise, supplements, and reduced medications, I am able to function close to a "normal" person! I can even rigorously exercise for 45 minutes a day! The team at the POTS Treatment Center are certainly angels! They gave me tools so that I can get my life back! 

I am hoping to decrease more of my medications in the next few months! I am also in the process of applying to graduate school to pursue a degree in neuroscience. I have started applying to summer jobs too! That is something I did not think I would be saying last year :) I'm so glad to be feeling so much better!!!!

Check out my video testimonials of the POTS Treatment Center at:
http://www.youtube.com/watch?v=LIpw11zx8lI
http://www.youtube.com/watch?v=_KkLitrN0CM