POTS was not so invisible for me after all...ouch!

[firewatcher]

I was diagnosed with POTS just after my youngest son turned five. He is 16 now and has turned out to be a pretty great person. He is the typical teenage guy (into cars and girls and video games,) but he is also a very keen observer of family and friends behavior, and so we talk about it. I try to make him understand that people are often not so simple and that words and actions can’t always be taken at face value. Recently, after seeing the results of several studies and learning more about the cancers caused by HPV virus, I suggested to him that I would like to have him vaccinated. The response I got from him surprised me. 

As a person with POTS, I am consistently frustrated with the lack of understanding by and education of health professionals; most doctors, nurses and PA’s have never heard of POTS and know far less than what is on the Wikipedia page for the condition. There had been some suggestion that the HPV vaccination couldtrigger whatever change creates POTS in a very small population of pre-teens receiving the vaccination. For this reason, when this particular vaccination came up on my son’s schedule, I balked and wanted to discuss the potential and possible treatment should it happen. The pediatrician’s PA grew abrupt and angry, saying that such a reaction was not possible. After I refused to have the HPV vaccination administered, she attempted to give it to him in the lab-room where he was having his blood drawn. I would never allow her to treat my child again. The following year, I attempted to discuss this again with his pediatrician, but instead of a discussion I was told: “Fine, He doesn’t need it, it doesn’t protect boys anyway.” 

         My symptoms from POTS have only been moderate (in my opinion) and certainly have not impacted my life as greatly as others I know from various support forums. I thought I was improving and handling the physical issues very well. So when my son asked about why I’d changed my mind about the vaccine, his questions caused me to reconsider how “invisible” my illness has been. He asked “Is POTS what is causing you to _____?” and he recited various symptoms I deal with on a daily basis. He then asked, “Is POTS the thing that causes you to not be able to ______?” and then he recites several of the activities I frequently have difficulty doing. We had just discussed the incidence and kinds of cancers caused by HPV, so I was surprised when he said, “Mom, I’d rather risk dying of cancer than live like you have with POTS.” 

         Ouch! Not so invisible after all.

[Guest KiminOrlando]

We make small adjustments gradually and think it doesn't matter. We go on with our 'normal' thinking it IS normal. Then you come face to face with true normal and it is startling. 

[Pistol]

I have a thirteen year old daughter. She grew up with me having POTS. She does not even know what it is like to have a mother who goes to her recitals/ school functions/ fundraisers/ shopping etc … I used to work full-time and all of my former co-workers, friends, neighbors recognized my limitations way before I did ( that is called denial ). However my family did not experience it quite as drastic like that, they just saw a slow decline in function and kept coming up with different reasons for that. --- Today my daughter is aware of my limitations, understands the reasons for them  and tries to accommodate them. Yes - it is an invisible illness to STRANGERS who look at our appearance but we cannot hide it from those who witness our abilities on a day-to-day basis. As the saying goes: beauty is in the eye of the beholder. So is POTS. 

[StayAtHomeMom]

I have similar issues with pushy doctors and vaccines. The HPV vaccine is just too new for my liking. It makes me nervous. They kept trying to push it on me til I got too old then started on my oldest boy. I just tell them every year no. And to the flu shot as well. 

As far as not realizing how much POTS effects daily things, I know what you mean. I was recently told by my a relatively new friend who I have known about a month and a half that she sees me do certain things and asked if that was because of my POTS. I thought I was mostly doing OK but apparently it was obvious to a new person in my life. My boys are very understanding and they don't get upset with me when I can't take them to the pool because I am too exhausted after work.

 

[bombsh3ll]

I can totally relate to being aware of how my kids and other people in my life see me due to POTS. I have a son who is 9 and a half, and he remembers me as being able bodied for the first 5 years of his life, then must have been so confused when I totally transformed in a day to being very limited. He will sometimes exploit my condition by running out of reach as he knows I cannot chase him, or moving the TV remote away from me when it's time to turn off his TV. My daughter on the other hand is 5 and I developed POTS when she was 14 months old, so she has only ever known be to be disabled, and helps me a lot, as young as she is. 

I try to be positive yet honest with them, and hope that although they miss out on a lot, having a parent with a chronic illness will teach them compassion and sensitivity towards other people with limitations that they encounter in their lives. 

I don't know what to think about the HPV vaccine to be honest. The teenage years are a common time to develop POTS and it figures that a certain number of young people will get it soon after being vaccinated, but proving causation is difficult. I too would probably rather take my chances with cancer though than POTS, at least it generally has a better than 50% cure rate plus the medical system and people in general are much more understanding and sympathetic towards cancer as an illness. 

B x

[DizzyGirls]

A patient of our chiropractor had the HPV shot a few years ago.  She was a high school wrestler and was very good.  After the HPV vaccine (there are 2, I believe), she developed a ton of neurological problems, tremors, lost the ability to walk, talk, etc.  She went from star athlete to a spastic mess.  Our chiropractor knew of a natural health lady in the UK (She does phone interviews for people in the US) and somehow got the girl on a special diet/regimen and she has improved dramatically.   Whatever the lady in the UK did, helped tremendously.  So, that being said, my girls won't be getting the HPV vaccine.  I know most might not have a problem with the vaccine, but none of us on this sight are normal, or we wouldn't be here.  Just thought I'd share this story.  Feel so bad for the young gal, her life will never be the same.