Rain

Rain. We have a love hate relationship.

Emotionally I love the rain. Physically I hate the rain. With weather change, mainly cold weather, my body shuts down. I miss school, sleep all day, and just so tired that I don't want to do anything.

My favorite thing about rain is the cold. Weird I know! I love to bundle up next to the fire, read a good book, and drink hot chocolate. I have always loved fall season, but my body just doesn't like it. Fall season always brings the best time of the years. Changing colors of trees, snow, holidays, and sports.

I first got sick in October, been ten years this year, and it's always my worst time for my body. I get cold, feverish (without an actual fever), tired, sluggish, and when I am sick, I have it longer than others. My body can always tell when it's going to rain a day or two before hand. My body becomes sore, sluggish, painful, and get headaches. My knees get achy, just like people with arthritis, and can always tell people when it's going to rain.

I have always loved to watch the rainfall, hear it on the rooftop, and feel the rain on my feet. 

I love the cold, but my body doesn't. My feet and hands turn purple, and become so cold, socks don't warm them up. I love to put my feet under peoples legs, or putting them in front of the fire. I always have more jackets on then anyone else. I bring blankets wherever I go, doesn't matter where I go.  

With school, gosh I have missed so much because of the weather. In high school, I would go for maybe 1 or 2 days a week, or miss the whole week. Luckily with college I only go two days a week, but my body doesn't want to listen. I have missed school, and luckily teachers are okay with it. The one thing I found hard to do, was telling people in my class why I missed. I don't like lying and I want people to know about POTS, but a lot of people don't understand. I tell people I'm like a lizard. My home hospital teacher in high school said that to me. "You're like a lizard. You have energy in the sun, and sluggish when it's cold." 

Does anyone else have a problem with rain? Do you love or hate it? I love just standing in the rain, and just stand there and listen. Rain always has a melody. 

What's your story with rain? 

When It All Began

When It All Began

Hi Everyone. So where to start.... I guess I will start at the beginning when my life changed forever. When I was ten years old, October 2005, I went to bed perfectly healthy, but woke up dragging my right leg with no reflexes on my right side. We figured my "trigger" was having strep and the flu at the same time, apparently POTS was already in my system, because it can be hereditary, we think my mom has POTS as well. I started to get more symptoms and they continued to get worse. I went to the hospital four times in the first week, with one being an ambulance ride. I went through various tests, sometimes more than once, and was poked, prodded, scanned, and questioned over and over. My primary doctor at the time wanted me admitted for six weeks at UC Davis, luckily that didn't happen. I did not want to stay there any longer, because they messed up on a spinal tap they did. They had a resident perform it, and was off by a quarter of an inch, and had severe migraines for months after. 

Before my POTS was triggered, I was one of the most athletic kids you would ever know. I loved sports, even ones I could not play. I played soccer and softball from the age of four, had to quit soccer in 2007, and softball in 2009 my freshman year of high school. I loved swimming and basketball as well. I joined my local swim team, and that has been the best form of exercise for me since I got sick. I now swim for fun since I'm over the age limit now, and I only do that when my body will let me.

I have been in and out of school from 5th grade to Senior year of High School. I've been in home hospital and independent studies just to pass school. I couldn't function at school like "normal" kids. Whenever I would stand up, I passed out. Whenever I would walk a short amount of time, I became so sore, I would have to rest. Whenever I would eat something greasy or other types of food my body didn't like, I would become very sick. If I did to much the day before, I would become bedridden for days on end. My body became sluggish, tired, and painful. Medications didn't work, and that was all doctors would ever give me. 

During this time I have lost friends, but I gained something through all this, Loyal friends will stick through everything with you, and  others will show their true colors. During high school I lost many people I considered friends, but I found the ones who would stick with me through the thick and thin. Many "friends" will come and go, but the ones that are true friends will stay with me. I now have many close friends who sometimes still doesn't understand what I go through, but at least they are there for me when I need them the most. They always know they can count on me for them as well.  

I wasn't diagnosed with POTS until late December in 2009. With a tilt-table test. It was that simple, but yet I went through hundreds of doctors, who some told me I was faking, wanting drugs, or just plain crazy. I went through four years of people saying that to me even people I called friends and family. Once I was diagnosed people still didn't believe me, POTS is not a common name (it didn't get its name till the lat 90's). 1 of 200 children have this, most common in girls. But adults can get it later in life as well.

I wanted to be off all meds, because they didn't know what else to do. My mom and me joined facebook groups for POTS and we found some people do saline infusions. We found articles on it and brought it to my doctor who agreed to it, since it doesn't hurt. My body can't contain water, especially if they wanted to me to drink 8-10 bottles of water each day. I would get extremely nauseous after 2. We found that weekly saline infusions have helped so much, it gave me some sense of a life back. I graduated high school, and can now go to college full-time, even though its a junior college, it still lets me go to classes. I have gone for four years now once a week, sometimes twice. After two years my veins were collapsing, and they weren't that great from the beginning either. The nurses recommended a power port. I got my first one January 2014, and fell in love with it! I know weird right? But it changed my life, no more multiple pokes to get an I.V. started. I had to get it replaced after having it a year and a half, because of a blood clot on the tip. It broke off and now I have a clot in my arm for almost six months now. They have me on blood thinners which is difficult with trying to take pain meds, no ibuprofen. 

Now I take my days, one day at a time, and enjoy life while I can. My life may not be what normal 20 year olds are doing, but its my life and I don't care what others think. Sure I like to stay home and watch Netflix, then to go out partying with people. I like to still hang out with friends, just not what everyone else seems to think I should be doing.

Thanks for reading. I promise some of my other posts won't be as long... ;) 

Till next time! And Welcome to POTS Life. 

Click this Link to read more on POTS. 

- Nicole, POTS Life