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! :)

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://www.invisiblediseases.com/Home.html

http://www.youtube.com/watch?&v=RU43ZVMhU_8

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