POTS

Today in Rare Disease Day, and in lieu of that I wanted to try and clear up some misconceptions about my rare disease and raise some awareness about it. My disease is  Postural Orthostatic Tachycardia Syndrome or POTS, it falls under the blanket diagnosis of Dysautonomia. Basically POTS is a malfunction of the autonomic nervous system, this nervous system controls all bodily functions you don't think about such as heart rate, temperature, digestion, blood pressure and many more basic functions. Due to the vast amount of things that the autonomic nervous system no two cases of POTS are the same and two people with the disease may experience vastly different symptoms. The only symptom that all POTS patients have is an excessive raise in heart rate upon standing, as well as drops in blood pressure.


At this time there is NO cure for POTS or any form of Dysautonomia, and it is especially hard to find a doctor that is well versed in the disease as it is not taught in medical schools as well as nursing schools, due to the disease being discovered in 1993. Most of the time I being a patient with POTS am more knowledgeable than my doctors about my disease.

Along with there being no cure for POTS or any form of Dysautonomia there is not treatment for the disease itself. Yes there are thing I am doing for my POTS, but treatment is considered something that can potentially put a disease into remission or heal the person completely. For example chemo is treatment for cancer, surgery is treatment for appendicitis, but when it come to POTS all the doctors can do is treat the symptoms the disease is causing, not the actual disease itself. This means the doctors can not stop the progression of the disease, and there for more symptoms can pop up. Below I am going to make a list some of my symptoms and what we are doing for them if anything at all.....

My Symptoms

• Nausea (Nausea Medications and Feeding Tube)
• Low Blood Pressure (Blood Pressure Medication)
• Headaches (Migraine Medication)
• High Heart Rate (not being treated)
• Body Wide Pain (not being treated)
• Passing Out (IV fluids)
• Random Fevers (Tylenol) 
• Fatigue (not being treated)

This kind of shows what is typical for "treatment" in a POTS patient, all the doctors can do is mask the diseases symptoms, but nothing that is being given to me as a "treatment" will ever be able to actually get rid of the POTS or treat the POTS directly, even when I am going to be able to see a specialist in Dysautonomia there is no magic fix.

POTS Facts

1. About 25% of POTS patients are so disabled by the disease that they cannot work or attend school. 
2. Some POTS patients get better over time, while others, stay the same or get progressively worse.
3. Eat causes the body to redirect blood flow to the stomach to aid digestion, this can cause POTS symptoms to worsen, sometimes even causing passing out.
4. People with POTS have around the same quality of life as a person with COPD and Congestive Heart Faliure.
5. It often takes years for someone with POTS to receive a proper diagnosis

I Will Always Remember

Today, I've laughed so hard I couldn't breathe and I've cried while washing purple chalk out of my hair, but the biggest thing I've done today, they most important,  is I remembered.

A year ago today, February 27, the news came that a friend of mine had passed from her earthly life, to live for eternity as a beautiful angel. I met Rachael though a Facebook page for teens with feeding tubes and we connected instantly, or at least I know for me we did. We had so much in common; both of us love the color purple, hello kitty, and rainbows, and as time went on it didn't matter what was going on with my health talking to her could make me smile. She understood, what it's like to be young and sick at the same time, as to most people those two things are mutually exclusive but to us they weren't. 

Over the past year I can't count the number of times I've gone back through and read our conversations. They sometimes seem so frivolous when I look back on them now, talking about dream dates or the beach, but they were what we needed then, an escape. As I get closer and closer to February of last year the messages slow and eventually they stop all together. That is one thing I regret, that I didn't use all the time I had, but I didn't anticipate that being all I would ever have. It's not something I think about often; I push the fact that all these diseases can so quickly take any one of us away from this place. But it is the overwhelming truth, that on days like today can so easily catch up to me.

I think about how we could so easily be in the opposite position with her writing this and me watching down from among the angels, and the thought scares me. I think about her family, her sweet mom and her dad, holding their baby for the last time and it makes me angry. Life shouldn't be this way. Children shouldn't go through what Rachael did, and gorgeous angel I promise, as long as there is still breath in my body and blood running through my veins, I will not stop trying to make this right. I may not be able to bring you back but, with your memory, Rachael, I will fight to fix the way things are done, so nobody has to go thorough what you and your family did ever again. 

I will always remember, and never quit fighting. That is a Promise.