After experiencing the satisfaction of finally making it to recovery, I was quite excited and motivated to resuming life to pre-POTS levels. The effects of POTS on my musculoskeletal system were far greater than I expected. The physical demands of the recovery process were great on my body. I was weaker than I anticipated, my muscles really didn't have tone to them. My endurance was close to nothing. I had been exercising (walking, biking, line dancing...) for several months, and I thought I was doing well. I had to slow down the recovery of my body and not do too much all at once, even though all I really wanted to do was make up for lost time. I didn't want to be gradual about the way I wanted to immerse myself back into my pre-POTS regular routine. I wanted to run again like I did when I was 14. I wanted to take part in every single family activity. My stupidity was trying to do everything when my body wasn't quite at the level to go, go, go!
I needed to improve my endurance and strength overall. "Convalescence" is defined as a gradual return to health after sickness and/or injury. What I didn't realize is that this process is not quick. There is no quick way of "getting back to normal". I had to be patient and work in baby steps. I did not want to erase all the progress I had already made by overdoing it with activity. I had to learn to stop pushing my body beyond its limits. This was difficult since I had been pushing my body beyond its limits since I was diagnosed back in 2005. Pushing my body is the reason I am at this stage now -- all of my hard work and determination allowed me to recover! Having to take it easy now has been tough.
But, by working slowly and doing a little more every day, I am now able to do just about anything that I want. I no longer rely on ANY medications. I am just taking supplements to strengthen all of my systems. I can take part in family and friend activities whenever I want and for as long as I want. I can eat normal sized meals again and not have to worry about my digestive system being so slow. I ran a few times (not for very long), and did okay with that. What I enjoy doing now is P90X3, which focuses on cardio and strength training. It is intense and I am already seeing and feeling the results. I am also working full-time (since February). So overall, I am doing just about anything I want to do. It did take a long time to get here, but I'm so happy I was lucky enough to be at a normal level again!
Friday, September 12, 2014
Friday, January 10, 2014
Lesson From 2013
Things do change. "Friends" will not always be there. True friends will always be there when you need them. I have learned that by moving on and leaving "friends" behind, that doesn't mean that I'm a bad person. I have just learned that I deserve better than "friends". I deserve real friends who actually care about me as much as I care about them. There is no reason that I need to be overly nice to some people just because that will make me seem like a good person. I have to do what's best for me. I have met so many fake people that I have forgotten what it's like to have friends that make an effort to want to hang out with me. It is a breath of fresh air! I'm so relieved and overjoyed to have met some amazing, genuine, honest, caring friends these last few months :) It means the world to me that I can call these individuals my friends!
Tuesday, December 31, 2013
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.
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.
Sunday, November 3, 2013
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
"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
Tuesday, October 22, 2013
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! :)
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! :)
Monday, September 9, 2013
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 :)
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 :)
Friday, May 31, 2013
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
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
Monday, May 13, 2013
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! :)
-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! :)
Sunday, May 5, 2013
Quite a long time since I've updated...
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| 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!!
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| 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
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
Sunday, July 1, 2012
Rants of July
T-minus one month until I go back to Mayo to see my doctor. I am still having a very difficult time with exhaustion and body temperature control. I am constantly sweating! It is quite crazy.
I don't want to feel self-pity, but I do sometimes. I am frustrated when I cannot do what I want to do. I am upset when I am forced to take a nap because I can barely sit in a chair without falling asleep. I am mad when I am exhausted the second I wake up every morning after sleeping for at least 8 hours. I am frustrated that I cannot find any relief for my symptoms. I am upset when I cannot remember things that I should know. I am frustrated when I have to take multiple showers in one day because I am so sweaty. I am frustrated after I eat because I become so fatigued and brain fogged. I am nervous about if I will ever grow out of POTS. I am frustrated that I cannot talk to my friends on the phone because I am too exhausted. I am frustrated when I have to plan out my every move throughout the day so that I can conserve what little energy that I have. I am confused as to why I have all of these symptoms since I exercise every day, drink a ton of water, eat a lot of salty foods, take my medications, stay away from humidity and heat as much as possible, and rest throughout the day. I do everything I can possibly do to make my POTS symptoms more manageable, yet the symptoms are still making my life a bit difficult.
I know I have every right to feel self-pity because having POTS is very challenging. There is constantly adjusts that are needed. Even the simplest tasks can be hard to do. I once thought that taking a shower was nothing special, but now I know that I can only be in the shower for 4 to 6 minutes and then I start to feel dizzy and exhausted. I know now that I have to keep a morning routine or else I will forget something, be too exhausted to do things if I do tasks out of order, and be too sleepy if I wake up too early or too late.
I am very sick and tired of being sick and tired. I don't want to be a POTS expert, I just want to be done with it. I want to be able to talk to my friends on the phone or hang out with them rather than sitting at home and wondering what fun I am missing out on. I don't want to be a prisoner in my house anymore; I want my house to be a refuge again. I want to be able to drive, run, bike, swim, workout, shop, dance, travel, and go on adventures. I know I am still young, and there is time for me to do these things, but I am young and have the potential to do what I want if POTS wasn't holding me back.
I don't like it when people say "there's always someone worse off than you". It is almost like they diminish me by treating my pain and struggles as insignificant unless it is worse than everyone else's. Yes, there are people who have much more difficult lives than mine, but I don't want to be viewed as less strong than I am. It is so difficult to live with POTS...no doubt about that! Every second of every day brings about challenges that I don't always want to deal with. I don't want to deal with the fatigue, brain fogging, confusion, occasional constipation, muscle weakness and pain, eye pressure and pain, headaches and migraines, body temperature instability, irritability, noise sensitivity, light sensitivity, palpitations, dizziness, and joint stiffness and pain. That is a lot to deal with every day along with the usual stresses of living such as time management, having an internship, school, preparing to find a job, and living at home. Life isn't simple, but having POTS sure does complicate things!
I am strong. I know that. I make it through every day without complaining very much (which is why I like to vent like this sometimes). I still am able to push through my symptoms to get ready every morning to go to my internship two to three times a week. I have never missed a day of school. I am still able to workout every day even if I feel like my body is giving up on me. I push through everything which is not always easy. I struggle with the fact that I cannot do everything that I want to do. I have hope that one day I will be able to do the things I want when I want to do them. I have hope that POTS will not stay with me in my journey through life. I hope that I can manage my symptoms better and find out what is causing my symptoms to be worse again. I just have to "keep my head up"....
Thursday, June 28, 2012
This summer is not such a summer...
Overall, I've been doing just eh. There is no other word to describe it. I am extremely exhausted all of the time. I may not have a ton of muscle/joint pain as I have had in the past and my brain fogging is slowly improving, but my exhaustion seems to be increasing dramatically. I am not sure why this is happening, and neither does my doctor!! So that being said, I am going back up to the Mayo Clinic on August 1 for more testing and to see my doctor. He is puzzled with my symptoms. He wants me to get an exercise bike ride test done while I am up at Mayo. I haven't had this test done before. It seems really interesting to me since it includes some pulmonary type of testings too. I hope it gives us more answers as to why I am experiencing my symptoms when I
am trying really hard to manage my symptoms with meds, exercise, fluids, rest...etc. My mom is getting suspicious that there might be an underlying condition to my POTS. She has been researching a ton and
thinks that I could have MS. I am not sure about this, but there's always a possibility I guess.
I do have some stomach issues (more intestinal though) because there are times that I get very constipated and/or nauseous. The nausea comes from a whole assortment of things...from eating too much, eating
too little, being out in the sunshine for more than 10 minutes, standing up too fast, sitting around the house for too long (more than 2 hours at a time), or being in a humid environment.
I have been too exhausted to even walk down the stairs to my cold basement to exercise. I have done some more simple exercises recently such as playing "chase" with my cat for a few minutes or walking up the stairs for a few minutes while holding onto the handrail. It is as though my body is shutting down recently because I cannot do much of anything. This makes the summer not such a summer because I cannot really participate in life. I am constantly exhausted and it is hard to talk, walk, or sit at times. It is very frustrating!!!
I feel very dizzy because of the humidity outside and every muscle in my body feels so fatigued that it seems as if my muscles have turned into cement--they feel so heavy!! I feel so weak and could easily take a nap at any point during the day. I also feel mentally drained also since I am focused on just making it through the day.
Being an intern this summer at a non-profit organization is challenging, even though I only work 3 days a week for a couple of hours. I have shared with my co-workers and my supervisor that I have POTS, but I definitely cover up my symptoms with makeup, a good attitude, and a big smile always! It really helps being able to cover up my symptoms because if I don't think about how tough it is to live with POTS day in and day out, then sometimes I just forget about it and live in the moment. This, of course, doesn't happen all of the time especially when I am so incredibly exhausted!!
I just hope that with the visit to Mayo in August that I will have some news...whether it be good or bad. I just want to know why I am so exhausted this year when last summer I was feeling so amazing and practically "normal". My patience is constantly being tested with having my POTS act up so much, so I will continue to hang in there and live with the weird symptoms until August comes around! :)
am trying really hard to manage my symptoms with meds, exercise, fluids, rest...etc. My mom is getting suspicious that there might be an underlying condition to my POTS. She has been researching a ton and
thinks that I could have MS. I am not sure about this, but there's always a possibility I guess.
I do have some stomach issues (more intestinal though) because there are times that I get very constipated and/or nauseous. The nausea comes from a whole assortment of things...from eating too much, eating
too little, being out in the sunshine for more than 10 minutes, standing up too fast, sitting around the house for too long (more than 2 hours at a time), or being in a humid environment.
I have been too exhausted to even walk down the stairs to my cold basement to exercise. I have done some more simple exercises recently such as playing "chase" with my cat for a few minutes or walking up the stairs for a few minutes while holding onto the handrail. It is as though my body is shutting down recently because I cannot do much of anything. This makes the summer not such a summer because I cannot really participate in life. I am constantly exhausted and it is hard to talk, walk, or sit at times. It is very frustrating!!!
I feel very dizzy because of the humidity outside and every muscle in my body feels so fatigued that it seems as if my muscles have turned into cement--they feel so heavy!! I feel so weak and could easily take a nap at any point during the day. I also feel mentally drained also since I am focused on just making it through the day.
Being an intern this summer at a non-profit organization is challenging, even though I only work 3 days a week for a couple of hours. I have shared with my co-workers and my supervisor that I have POTS, but I definitely cover up my symptoms with makeup, a good attitude, and a big smile always! It really helps being able to cover up my symptoms because if I don't think about how tough it is to live with POTS day in and day out, then sometimes I just forget about it and live in the moment. This, of course, doesn't happen all of the time especially when I am so incredibly exhausted!!
I just hope that with the visit to Mayo in August that I will have some news...whether it be good or bad. I just want to know why I am so exhausted this year when last summer I was feeling so amazing and practically "normal". My patience is constantly being tested with having my POTS act up so much, so I will continue to hang in there and live with the weird symptoms until August comes around! :)
Monday, June 4, 2012
Invisible Disease Awareness Day
Day of Visibility is June 6th! Every June 6th, we pull together as one large family across the globe and spend that day devoted to raising visibility about Invisible Diseases!
"The More We Bring Our Voices Together, The More Likely We Are To Be Heard!"
Dysautonomia, Chronic Fatigue Syndrome, Fibromyalgia, and Lyme Disease are a few of the popular Invisible Diseases.
Dysautonomia (autonomic dysfunction) is a broad term that describes any disease or malfunction of the autonomic nervous system. This includes Postural Orthostatic Tachycardia Syndrome (POTS), Vasovagal Syncope, Mitral Valve Prolapse Dysautonomia, Pure Autonomic Failure, Neurocardiogenic Syncope (NCS), Neurally Mediated Hypotension (NMH), autonomic instability and a number of lesser-known disorders.
These Invisible Diseases are causing a silent pandemic and we are in a mass medical emergency. The medical community doesn't even recognize Invisible Diseases in patients sometimes because the symptoms of these conditions mimic other diagnoses. This is why it is so difficult for patients with Invisible Diseases because they do not get help from the medical community, which in turn doesn't help the fact that family members and friends do not believe their symptoms to be real. Well they are real. They are life-altering. They limit patients' day-to-day living. Some patients cannot attend school or are even wheelchair-bound or bedridden. Invisible Diseases should not ignored or be invisible anymore!! Visibility is needed for patients to receive proper medical care and support so they can feel better and be cured!!
Raising Visibility is the way that we are going to get the help that we need! Let’s work backwards from our goal... We need a cure. We need extensive research to find the cure. But in order to get research teams together, we need the funding. The only way to get enough funding is to let the people know how and why we need it!
Please check out this site linked below and these YouTube videos for more information!! Also, you may message me on this Events page or privately message me for more information! Please spread the word about Invisible Diseases. Tell one person! If you tell just one person, that is one MORE person that knows about Invisible Diseases!
http://
http://www.youtube.com/
http://www.youtube.com/
"The More We Bring Our Voices Together, The More Likely We Are To Be Heard!"
Dysautonomia, Chronic Fatigue Syndrome, Fibromyalgia, and Lyme Disease are a few of the popular Invisible Diseases.
Dysautonomia (autonomic dysfunction) is a broad term that describes any disease or malfunction of the autonomic nervous system. This includes Postural Orthostatic Tachycardia Syndrome (POTS), Vasovagal Syncope, Mitral Valve Prolapse Dysautonomia, Pure Autonomic Failure, Neurocardiogenic Syncope (NCS), Neurally Mediated Hypotension (NMH), autonomic instability and a number of lesser-known disorders.
These Invisible Diseases are causing a silent pandemic and we are in a mass medical emergency. The medical community doesn't even recognize Invisible Diseases in patients sometimes because the symptoms of these conditions mimic other diagnoses. This is why it is so difficult for patients with Invisible Diseases because they do not get help from the medical community, which in turn doesn't help the fact that family members and friends do not believe their symptoms to be real. Well they are real. They are life-altering. They limit patients' day-to-day living. Some patients cannot attend school or are even wheelchair-bound or bedridden. Invisible Diseases should not ignored or be invisible anymore!! Visibility is needed for patients to receive proper medical care and support so they can feel better and be cured!!
Raising Visibility is the way that we are going to get the help that we need! Let’s work backwards from our goal... We need a cure. We need extensive research to find the cure. But in order to get research teams together, we need the funding. The only way to get enough funding is to let the people know how and why we need it!
Please check out this site linked below and these YouTube videos for more information!! Also, you may message me on this Events page or privately message me for more information! Please spread the word about Invisible Diseases. Tell one person! If you tell just one person, that is one MORE person that knows about Invisible Diseases!
http://
http://www.youtube.com/
http://www.youtube.com/
Sunday, May 20, 2012
Updates for May
Well it sure has been awhile since I posted something new! It is because of good and bad reasons. The good reason is that I have started my internship at an organization that helps urban youth. It is really fun and exciting to be able to intern this summer. It is, however, extremely tiring! I have not told my organization that I have POTS, nor did I give any hint that there is something wrong with me. I just put on the front that I am perfectly normal like everyone else. So far so good. I have to move around a lot and work for several hours a few days a week, which makes it very difficult for me to do anything else beyond my interning. I come home and I am completely exhausted! But, one the bright side, at least I can intern!
The not-so-great reason why I haven't posted in awhile is the fact that my symptoms are still around. I am always exhausted whether I am interning or not, my joints and muscles are achy, I have a lot of eye pressure in my right eye again, I experience a lot more headaches, and I still get easily overwhelmed. Sometimes I have tremulousness in my hands especially. The fatigue is definitely the worst symptom though because I want to do so much, but I am not able to do things I want to do. I really truly rely on my medications to get me through the day since I am so fatigued. I wish there was an energy drink or a magic pill that I can take to eliminate the fatigue. It would make my life a whole lot easier!
My family and I also went on a vacation to Disney World! We walked around for several hours each day when we were there. I went on a ton of rides too! I would not have been able to survive that trip without the help of Disney's Guest Assistance Card! The card tells the "Cast Members" to allow me and my family to use alternate entrances to rides and attractions so that I did not have to wait in lines. If I did not have the card, then I predict that I would have been miserable --dizzy, lightheaded, nauseous, and even more fatigued! The card was a lifesaver!
On one of the last days of the trip, though, I was so extremely fatigued and did not feel well. I kept pushing through it so that I was not missing anything, but that might have been a bad idea. Because I pushed through my symptoms, I was very very exhausted and my symptoms were then exaggerated because of it. I had a pounding headache, had trouble staying awake, and was very overwhelmed. The bright lights and loud noises associated with the rides and attractions at the parks, along with the chaos of crowds of people, set me into a state of what I call "Sara the Zombie". When I feel this way, I am very quiet, have trouble staying focused, am indifferent to what is going on around me, and I feel drained. It is as if my brain just tells me it wants to shut down for awhile and go on "hibernate mode". My mom and I went back to the hotel room when I felt this way so that I can relax in bed without the chaos of being at the parks. I was able to have my body rest in an environment that was quiet, semi-dark, and cold. This helped a lot. It was very annoying to me that I had to leave the fun of being at the parks so that my body can recuperate! It was not easy for me to leave the rest of my family while they went to go have fun. But, I know that if I were to stay there, then I would not feel very good.
I had an emotional breakdown because it feels as though I am plateauing in my recovery process. It feels as though I am at a standstill with improvement. It just feels like I am living my new "normal". I have felt the same way for such a long period of time now without a great deal of improvement. I still am extremely fatigued and experience all of the symptoms that I have in the past. It is a challenge for me to accept that I am feeling this way and even though I am working so hard to feel better, I am not feeling any better than I have felt in the past. Yes, I do not experience as much pain as I have in the past, but the fatigue is what bothers me the most. The fatigue is just as bad, if not worse, than when I was first diagnosed with POTS. When my family and I went on a vacation to Disney World in 2008, I was not diagnosed with POTS. The doctors thought I still had Myasthenia Gravis. I was able to stand in lines for a while without having to lean on the walls or sit on the handrail because I was dizzy or fatigued. I did not have to take a lot of breaks or continuously go on rides to keep my adrenaline level high so I didn't feel as fatigued.
I just feel that overall I was not as symptomatic in 2008 as I am now. I do not know if I am just remembering incorrectly about what happened in the past or if my POTS is really worse now than it was 4 years ago. I do not know whether the new medications are working, but I do know that I am not happy with being so fatigued all of the time! I want to get better, and I will continue to work hard to get better! I am not giving up, nor am I depressed about not having more positive results. I am just frustrated and more driven towards receiving better treatment and better results!
The not-so-great reason why I haven't posted in awhile is the fact that my symptoms are still around. I am always exhausted whether I am interning or not, my joints and muscles are achy, I have a lot of eye pressure in my right eye again, I experience a lot more headaches, and I still get easily overwhelmed. Sometimes I have tremulousness in my hands especially. The fatigue is definitely the worst symptom though because I want to do so much, but I am not able to do things I want to do. I really truly rely on my medications to get me through the day since I am so fatigued. I wish there was an energy drink or a magic pill that I can take to eliminate the fatigue. It would make my life a whole lot easier!
My family and I also went on a vacation to Disney World! We walked around for several hours each day when we were there. I went on a ton of rides too! I would not have been able to survive that trip without the help of Disney's Guest Assistance Card! The card tells the "Cast Members" to allow me and my family to use alternate entrances to rides and attractions so that I did not have to wait in lines. If I did not have the card, then I predict that I would have been miserable --dizzy, lightheaded, nauseous, and even more fatigued! The card was a lifesaver!
On one of the last days of the trip, though, I was so extremely fatigued and did not feel well. I kept pushing through it so that I was not missing anything, but that might have been a bad idea. Because I pushed through my symptoms, I was very very exhausted and my symptoms were then exaggerated because of it. I had a pounding headache, had trouble staying awake, and was very overwhelmed. The bright lights and loud noises associated with the rides and attractions at the parks, along with the chaos of crowds of people, set me into a state of what I call "Sara the Zombie". When I feel this way, I am very quiet, have trouble staying focused, am indifferent to what is going on around me, and I feel drained. It is as if my brain just tells me it wants to shut down for awhile and go on "hibernate mode". My mom and I went back to the hotel room when I felt this way so that I can relax in bed without the chaos of being at the parks. I was able to have my body rest in an environment that was quiet, semi-dark, and cold. This helped a lot. It was very annoying to me that I had to leave the fun of being at the parks so that my body can recuperate! It was not easy for me to leave the rest of my family while they went to go have fun. But, I know that if I were to stay there, then I would not feel very good.
I had an emotional breakdown because it feels as though I am plateauing in my recovery process. It feels as though I am at a standstill with improvement. It just feels like I am living my new "normal". I have felt the same way for such a long period of time now without a great deal of improvement. I still am extremely fatigued and experience all of the symptoms that I have in the past. It is a challenge for me to accept that I am feeling this way and even though I am working so hard to feel better, I am not feeling any better than I have felt in the past. Yes, I do not experience as much pain as I have in the past, but the fatigue is what bothers me the most. The fatigue is just as bad, if not worse, than when I was first diagnosed with POTS. When my family and I went on a vacation to Disney World in 2008, I was not diagnosed with POTS. The doctors thought I still had Myasthenia Gravis. I was able to stand in lines for a while without having to lean on the walls or sit on the handrail because I was dizzy or fatigued. I did not have to take a lot of breaks or continuously go on rides to keep my adrenaline level high so I didn't feel as fatigued.
I just feel that overall I was not as symptomatic in 2008 as I am now. I do not know if I am just remembering incorrectly about what happened in the past or if my POTS is really worse now than it was 4 years ago. I do not know whether the new medications are working, but I do know that I am not happy with being so fatigued all of the time! I want to get better, and I will continue to work hard to get better! I am not giving up, nor am I depressed about not having more positive results. I am just frustrated and more driven towards receiving better treatment and better results!
Sunday, April 8, 2012
Zzzzzzz...
I'm sleepy. I don't know if I am more sleepy now or if I am slowly getting better. Maybe I'm just exhausted or am doing too much exercising. Maybe the new medicine is working...or maybe not. I am not sure what is going on with me, but I know I'm not me. I am so tired all the time still and experience a lot of brain fogging too. There are times that I feel like I cannot concentrate and times when I feel as though something else is controlling my body. I just don't feel like me anymore. It feels like I barely know how "normal" is supposed to feel anymore because this has been my "normal" for so so long!!
I'm really considering going to New York to see a new doctor there. I just feel like maybe I need a second opinion or just a new set of eyes and ideas.
I also have more bruises on my legs. Now I have 4 small bruises. A few weeks ago I had a large bruise on my inner left calf, but now the little bruises are in various places on my legs. I don't know why this is happening, but I am getting slightly worried about it. Getting bruises is normal when you hit your leg on something, but it definitely is not normal when I know for a fact that I did not hit my legs on anything. So I will keep an eye on it.
As for school, it is going okay but getting schoolwork completed is so difficult for me because I am so fatigued and brain fogged all of the time. I am still achieving very high marks, but I wish I could be able to focus more on the tasks that I need to accomplish without being brain fogged. Soon enough I will have this all figured out and I will be feeling better. Feeling better and still achieving high marks in school are my ultimate goals. I know I will somehow achieve both of those goals :)
I'm really considering going to New York to see a new doctor there. I just feel like maybe I need a second opinion or just a new set of eyes and ideas.
I also have more bruises on my legs. Now I have 4 small bruises. A few weeks ago I had a large bruise on my inner left calf, but now the little bruises are in various places on my legs. I don't know why this is happening, but I am getting slightly worried about it. Getting bruises is normal when you hit your leg on something, but it definitely is not normal when I know for a fact that I did not hit my legs on anything. So I will keep an eye on it.
As for school, it is going okay but getting schoolwork completed is so difficult for me because I am so fatigued and brain fogged all of the time. I am still achieving very high marks, but I wish I could be able to focus more on the tasks that I need to accomplish without being brain fogged. Soon enough I will have this all figured out and I will be feeling better. Feeling better and still achieving high marks in school are my ultimate goals. I know I will somehow achieve both of those goals :)
Tuesday, March 27, 2012
Good I guess...? But weird!
Well it has been almost a week since I have last updated. The stomach pains are almost all the way gone. Still occasionally have troubles, but overall it is better. And, the brain fogging is replaced with a "drunk" feeling. I feel as though my mind and body are being controlled by something other than me. I wrote 2 essays that were 7 pages each in less than 3 hours! I usually write one essay in at least 3 or 4 hours! And, I couldn't remember what I actually wrote. It was as if something in my brain was telling me to type stuff down, but I had no recollection of it all. It's as if I was in such a deep zone or something. It is scary!
Also, on Sunday very early morning (roughly 12:30ish), I woke up and realized I had fallen asleep while watching t.v. I had not brushed my teeth, so I decided that I might as well brush them before I go back to sleep. Well, I wasn't expected what had happened next... I had lost my coordination. I could barely walk a straight line while walking down the hallway to the bathroom. I had to hold onto the wall at one point because my legs felt like jelly and the floor felt like it was moving. I had no idea what I was saying when I was talking to two friends of mine when I saw them in the bathroom area, and I had no idea how loud I was talking either. It was a scary feeling because I have never experienced this. This was the first day of increasing the Celexa dosage too. I was afraid to take it the next day! But, I took it and went to bed shortly afterwards. Thankfully I was ready for bed when I took it, and I was in bed before any side effects occurred. Hopefully I don't experience that "loopy" feeling again!!!
I'm still crossing my fingers with the Celexa working well though! I hope to be feeling better soon!
Also, on Sunday very early morning (roughly 12:30ish), I woke up and realized I had fallen asleep while watching t.v. I had not brushed my teeth, so I decided that I might as well brush them before I go back to sleep. Well, I wasn't expected what had happened next... I had lost my coordination. I could barely walk a straight line while walking down the hallway to the bathroom. I had to hold onto the wall at one point because my legs felt like jelly and the floor felt like it was moving. I had no idea what I was saying when I was talking to two friends of mine when I saw them in the bathroom area, and I had no idea how loud I was talking either. It was a scary feeling because I have never experienced this. This was the first day of increasing the Celexa dosage too. I was afraid to take it the next day! But, I took it and went to bed shortly afterwards. Thankfully I was ready for bed when I took it, and I was in bed before any side effects occurred. Hopefully I don't experience that "loopy" feeling again!!!
I'm still crossing my fingers with the Celexa working well though! I hope to be feeling better soon!
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