Belinda, a woman in her early 30s is one person who loves living the good life as a true California woman does. She thrives as an attorney but loves playing RockBand and rooting for the San Diego Padres Baseball when she is not kicking some butts in court.
However, she did not get to that point without undergoing some ordeal herself. Belinda had her struggle with PoTS, and it all began in the summer of 2004. She had just completed her first year of law school and was on a six-week study abroad program in Prague, Czech Republic when PoTs reared its ugly head.
Belinda became terribly sick during that program, and as anyone would think, she assumed it was nothing much. There were one thousand reasons why she could have taken ill, including a change of environment. However, she concluded that it was just a cold. Although she was told that it was probably a virus. The sickness cleared up in a few days, and she enjoyed the rest of her time in Prague.
About a month after Belinda returned to the United States, she became ill with severe stomach pain. The sickness was so terrible that she could not keep food down. She would throw up almost immediately after eating. In a matter of weeks, the effect of the illness was all over Belinda. Gradually, she dwindled from a healthy weight of 132 lbs. to a frail 108 lbs. The change was drastic, and it became a cause for concern. Whatever it was, it was beyond a change of environment.
Using her discretion, she met many doctors who ordered a plethora of tests. Regardless of that, no one could figure out what was wrong. The sickness got worse and she had no choice but to withdraw from law school, as she was unable to attend classes.
Belinda had never experienced such a frustratingly long waiting period like that before. She would start a day with a fresh hope that something would change, but by the time she would go to bed, she would be in a state of bleakness and hopelessness. Finally, after about eight months of pain and frustration, she got diagnosed with gastroparesis.
Fortunately, the diagnosis revealed that she had a mild case that could be controlled through lifestyle changes. She incorporated regular exercises, healthy eating habits, and taking adequate rest, among other things into her routine. By the following year, she returned to law school, managed to graduate, and also passed the California bar examination. Graduating and passing her Finals tested the very limits of her determination and strength. Nevertheless, she got the reward of hard work in the end.
Five years later, after her very first sickness, she fell sick again. It was on May 17, 2009, and she was spending time with friends at an outdoor festival. She began to feel sick, and the next thing she knew was that she had fainted on the street. Her concerned friends rushed her to the Emergency room where she got assessed. In the end, the doctors diagnosed her with “dehydration.” They could not find anything else wrong with her.
However, in the days, weeks, and several months that followed, Belinda did not feel right. If dehydration was the correct diagnosis, it should have corrected itself. Hence, she suspected that the diagnosis had been wrong. It automatically implied that all restorative approaches were also wrong; she was fetching water into a basket. Belinda believed that once she got the right diagnosis, a cure would not be too far away, but she was wrong.
She would become dizzy, her heart would race, and Belinda would begin to struggle with balancing without any cause or warning. She also suffered extreme fatigue. Then, the endless hospital visits started too. There, instead of finding answers, she got transferred from one specialist to another. Belinda became the new lab rat, having tests after tests conducted on her. Despite her concerted efforts, there was no change and no positive outcome. After some time, the specialist gave her a diagnosis of iron deficiency anemia. Belinda knew within her that it was the wrong one, but she could not prove it. Also, would she know better than one who specialized in that field? The diagnosis was just too simple and straightforward to have remained hidden for so many years. To her, it was a replay of the dehydration episode all over again. However, she did not have a better explanation, and her iron levels were indeed low according to the test results.
Belinda continued to manage what was turning out to be a difficult and chronic condition for the next year. However, she did not feel better even after her ferritin iron levels returned to normal.
Two years later, in 2011, she got referred to a cardiologist who suspected her of having orthostatic intolerance. Based on that, he ordered a tilt table test in February. The test results led to the diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS). Immediately after the test, the cardiologist checked Belinda in the examination room and told her she had POTS. He succinctly advised her that she should drink a lot of water and mentioned that she would never be able to have kids. That summed up what she got from the cardiologist. There were no other instructions, no follow-up appointment, nothing at all. So, she had the diagnosis, but no cure or at least, a pointer.
To make matters worse, the cardiologist gave Belinda the wrong piece of information. She had no idea why he did that, nor did she know that it was wrong at that time. Telling her that she would never be able to give birth did not give her a deep wound, it also dashed whatever hope she had of ever having a family of her own. Of course, she knows better now. After getting the diagnosis, she also made efforts of her own to get the necessary pieces of information about the illness that almost wrecked her life forever.
After failing to get the necessary medical support that would help her heal, Belinda turned to the internet for answers. Fortunately, she met other PoTS patients in her area through the online resources she got. For what seemed to be an uncharted area, she got a lot of materials and met a handful of individuals who had PoTS too. The people she met recommended a great cardiologist who was familiar with PoTS, Dr. Ahern.
Although Dr. Ahern helped Belinda to feel better, the symptoms did not stop. She continued to experience them. It has become difficult for her to work, and she has no alternative support system or income. Also, her employer does not provide health insurance. So, Belinda has to foot the high monthly premiums for private insurance as her pre-existing condition made her expensive to insure. It has indeed been a difficult period for her. Everything came crashing down, and unfortunately, there has been no escape route for her. At this point, she has only been diagnosed with PoTS, and she is not sure if there were other tests to run. So, she has two dilemmas to solve: she has to remain healthy at all costs, and she needs money to survive.
Apart from the financial strain she experiences, Belinda also worries about other things. Will it ever be physically possible for her to stand across from the man of her dreams and say, “I do”? Although she now knows that PoTS will not stop her from having children, she still wonders if she will ever be able to go through that process. From all testimonies and indications, it is not child’s play for someone with PoTS to bear children. Another question on her mind is if she will ever become a productive member of society or just a drain on its resources. So far, PoTS had made her nothing but a liability.
However, she is learning to accept her PoTS diagnosis, to declare that PoTS is what she has, not what she is, but every day is a challenge. Regardless of the many troubles PoTS brought into her life, it also allowed her to meet a wonderful community of amazing people she never knew existed. The PoTS community is everything she has dreamt about. They have one thing in common- PoTS. By sharing their experiences, insights, hope, and laughter, they will overcome the challenges together. One sure thing is that they will all emerge victoriously.
