Do Not Put Sprinkles Up Your Nose…

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It’s officially summer vacation in our household which means I’m home with the two cutest, most amazing, awesome, smart, and somewhat time consuming πŸ˜‰ children! I’ve decided that being a teacher is the BEST job to have if you’re a mommy who has to work. I get to be home with my little loves all summer and get a taste of what it’s like to be a stay at home mommy. It really is amazing. It makes me respect the women who stay home full time…you ladies are total badasses! This is hard work! But, it’s really special to be able to see every aspect of your child’s day. You don’t miss the little things…it’s definitely the most fulfilling, challenging, and rewarding job on the planet! I’m truly in heaven!

Now, all that being said…being on “mommy duty” all day, every day, while living with a chronic illness, is tough! Believe it or not, it’s way more challenging than being at work! I’ve had to work out a schedule to make sure I get my meds on time, enough fluids and food…that may seem like a crazy thing to have to schedule, but if I don’t, it won’t happen. As I’ve mentioned before part of having dysautonomia means that the automatic functions in your body sometimes don’t do what they are supposed to do…in my case this summer: temperature control! You know how when it’s really hot outside your body will start to sweat to help regulate its core temperature? Or, how about when it’s cold outside and your body starts to shiver to help warm itself up? Yeah…that doesn’t happen to some people who have POTS. So this summer of beautiful, gorgeous, hot weather, has made me very uncomfortable at times…I just cannot cool down. I feel silly sometimes when I talk about being overly hot because people must be thinking “yeah…it’s hot outside…what’s the big deal?!” It has taken a cold shower and laying on the floor in front of a fan on several occasions. Along with this temperature regulation nonsense I have been hit hard with very debilitating migraines…yuck! These are actually very common in people with this illness, but I’ve been one of the lucky ones…until this summer! Man! This pain is really like nothing I have ever experienced before…and I’ve birthed two children! The only medication that can even take the edge off is extra strength excedrin. It by no means elevates the pain, but it makes it so I can at least stop sobbing in agony as I battle through it. The crappy part is that there is caffeine in this drug, and as I’ve said before, since getting POTS, my body cannot tolerate caffeine…at all! Talk about being jittery…wow! What was once my vice is now my enemy! I am allergic to the prescription migraine treatments (of course!) and narcotics are an option, but I really don’t like feeling that loopy and exhausted. POTS makes me feel that way naturally at times…it’s really not a feeling I’m looking to experience any more than necessary! πŸ™‚

I know what you’re thinking…”man, this girl is livin’ the dream!”….and actually, I really think I am! When I think back to last summer, I cannot even believe I’m the same person. I was bedridden. I was scared. I didn’t drive for months. I let this illness control every aspect of my life. Now, I’m getting on with my life…and enjoying the ride. I have good days, and I have bad days…but I’m out of bed! I’m driving! I’m not scared. I am certainly not in control of this illness, but I’m in control of my treatment and how I respond to what’s going on. I mean, just today I was able to take my son, his friend and my daughter to swimming lessons and then out for a donut afterwards…as I sat there and tried to reason with a 2 year old as to WHY you cannot put sprinkles up your nose…I felt happy, and lucky, and that’s a pretty good feeling! πŸ™‚

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Up Next: Looking forward to attending the Dysautonomia Conference in Washington DC later this week! I’m anxious to meet experts in the field and connect with other POTSIES! Look for a blog about the trip early next week!

Oh, and t-shirts….I hope they have cool POTS t-shirts… πŸ˜‰

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