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Like I posted about last week, this month is Dysautonomia Awareness Month. Because of that, there are all sorts of extra videos and infographics that I’m seeing on facebook. I ran across this video that gives a basic description of what POTS is, and has some short little interview clips with doctors.
It’s 4 minutes long, so it won’t take much of your time. Please take a moment to watch, and pass it along to your friends. A lot of people are suffering with POTS, but because a lot of doctors have never heard of POTS (don’t get me started on this… it is incredibly frustrating!), it often takes years and years of suffering with symptoms for people to finally be diagnosed. Increasing awareness might save your friends or family members from years of suffering without help.
Thank you for continuing to be supportive on my journey with POTS. As always, I appreciate your comments and support, as well as connecting with those of you who also have POTS.
Well, after 8 long months of not toeing a starting line, this past weekend I FINALLY got to race a 5k! Being injured has felt pretty hard at moments, but that beautiful half an hour I spent running held to ease a whole lot of that emotion.
The night before my race I had a really chill and low key night. I ate dinner and spent the evening reading, watching One Tree Hill, and sitting in the glow of a candle.
So peaceful, isn’t it?
On race morning I was awake on my own at 6:40 am, excited and ready to go. I hardly remembered what a race morning was supposed to be like, and actually ended up forgetting my garmin at home (and didn’t realize it until I was at the race!).
The drive over to the race was pretty relaxed, and I think I just ended up listening to a podcast while enjoying the sunrise. Timehop also reminded me that morning that 5 years ago that very day was my very first race, which was on the exact same course!
The race fee was super cheap (10 dollars- no medal, no bib, no shirt- I loved that option!), and with only about 100 people running, it was a really smooth sign up. i warmed up briefly and chatted with a few friends before the gun went off.
I have only run a 5k distance once since March (on my birthday!) and my pace on my 1.5-2.5 mile runs has been between 12 and 13 minutes most weeks, so I had no idea what I should expect.
I hit mile 1 in just about 10 minutes, and really realized how off my pacing had been. It was just so exciting to be back on a race course after so many months. By about mile 1.75 mile legs felt tired and heavy, and I was not feeling excited with my decision to go out as fast as I had.
However, I thought about my post about living with POTS that I wrote last week, and thought about my journey of racing the last 5 years, and tapped into a strength I got from that.
I kept up a pretty good pace, listening to music from a playlist I made for the monumental half marathon in 2014 . I had started with a podcast but just couldn’t listen to the talking while I raced, and craved some good beats to run to!
Here are my splits:
- Mile 1: 10:10 (WAY too fast for how little I trained)
- Mile 2: 11:03
- Mile 3: 11:08
I crossed the finish line right at 33:00.
Overall I’m super pleased with this race. It felt good to be running, and I felt pretty strong, despite having bombed the first mile. I only came in thirty seconds slower than the same race last year, when I was in awesome shape, so I can’t complain at all.
Again, I just feel so thankful to be able to run.
I’m the face of an invisible illness.
This month is Dysautonomia Awareness Month, and as POTS is under the umbrella of dyantonomia (those illnesses that cause disruption in the autonomic nervous system), I knew that I needed to post.
I am the face of an invisible illness, POTS. It’s invisible, and people often don’t know that I have an illness, and even friends and family can easily forgot. People don’t see the struggle I experience.
People don’t see the fact that I have a bad headache every single day, no matter what I do. I’ve had a headache for almost 13 years, and have had no relief from it. You can’t complain about headaches for 13 years, so I stay quiet. I can’t give up my life for 13 years, so I continue to do what I want to do, trying to ignore and cope with the pain.
People don’t see the migraines that I get, the migraines that can last 3 weeks with no relief. They don’t see the times I sit in the ER getting an IV because I can’t stand the pain any longer. They don’t see me waking up in the middle of the night to take more medication, because if I don’t, I’ll wake up and throw up because of the pain. They don’t see it because it is invisible.
They don’t see all the times that I throw up because of intense stomach pain, or the pain that comes with the issues to my digestion. I stand up quietly and throw up, coming out and resuming whatever I’ve been previously doing. I can be at a friend’s house and throw up because of pain, and they’ll never know. Because I have an invisible illness.
People don’t see the intense pain and knots I get in my shoulders and back (suboccipital and paracervical pain due to poor blood flow) that makes me dizzy at times. I give up an hour many evenings a week to lay on tennis balls, ice packs, or heat pads to try to decrease some of that pain. They don’t see the time I spend on that, and they can’t feel the pain I feel.
People don’t see the times I almost pass out when I stand up. They don’t see how swollen my legs get due to blood pooling, how painful it is to take a step. They don’t see the times I have to sit down while showering because standing in one place for 10 minutes makes me really dizzy (I feel that it is pathetic that I can run a half marathon but standing in place without moving for more than a few minutes can make me pass out).
They don’t see the intense pain I get when I eat, but what choice do I have? We have to keep eating, keep getting good nutrition. So I force myself to eat, knowing that I’ll get stabbing pains when I do.
People don’t experience my crazy heart rhythms that make it impossible to sleep. I lose hours of sleep every week due to the insomnia that comes with POTS.
People don’t experience the deep pain I feel, where every fiber of my body is screaming, where even laying down brings me to tears. I can be in the same room, watching TV with people, and they may never know. Because I have an invisible illness, POTS.
I worry that I’ll never be able to get pregnant because of my illness, because I rely on my medications to allow myself to function. I celebrate my friends pregnancies because I am so excited for them, and cry behind closed doors because my heart breaks for myself. I’m alone in that pain, in that worry, in that heartbreak. I long for people who will say “Let me mourn with you. Let me hold space in your worry.”
I can’t leave the house without making sure I have several medications with me. When I go out biking or hiking, or even to the grocery store, I carry salt and migraine medications with me. I don’t travel without compression sleeves or socks.
I’ve figured out how to manage, because I don’t want to give up my life. I put on a brave face every morning when I wake up, knowing that standing up will send my body screaming in pain. I take a deep breath every time I eat a meal, knowing the pain that will follow. But I smile, and I laugh, and I love, because this is the one shot at life that I get, and I don’t want to waste it. And I know that people have it worse than I.
I have lived with POTS for almost 13 years. It’s hard to experience illness for that long, not knowing when it will go away. I choose to live with hope.
I am the face of an invisible illness.
To read more about my journey with POTS, check out my POTS page. Here are a few specific posts to start with:
- POTS- What Caused It? The beginning of my journey…
- 30 Things You May Not Know About Life With POTS
- Loss of Energy with POTS
- Dear Parent of Someone Diagnosed with a Chronic Illness
- 5 Things I Wish People Understood About Having a Chronic Illness
- But You Don’t Look Sick
For the last three months I’ve had it on my list to do another update on my “simplify” journey for the year, but time has gotten away from me. My journey to simplifying has been interesting. From January 1st-September 9th I’ve gotten rid of 335 items from my house (an “item” might be 1 stack of papers I’d been saving, for example). My goal was one item every day, so I’m definitely ahead of where I wanted to be, which I’m happy about.
However, I really haven’t been able to really appreciate the progress that I’ve made because about eight weeks ago a moving truck arrived at my house with 81 boxes and items of furniture. My parents sold my childhood home (that’s a whole different post, as it isn’t easy to say goodbye to a house you grew up in!), moving to a different place in the country, along with downsizing. So, needless to say, they could no longer hold onto the things they have saved, so they landed at my house. While plenty of the things I feel lucky to have (I finally have my piano that was purchased for me in 1st grade, for example!), it has filled my house and created a sense of feeling overwhelmed.
stacks of old pictures and projects tossed!
I’ve tried to go slowly box by box, but it’s definitely been a bit overwhelming! I’ve been living between stacks of boxes, since my house was full enough to begin with, and 81 boxes full of stuff certainly adds a whole lot to a house! I was cramming boxes in my extra bedroom, my extra bathroom, and in the corner of the kitchen. NOT how I want to live, but a necessity for the moment.
It’s felt like the opposite of “simplify”. It’s felt like complication.
I’ve spent hours going through page after page of homework, “artwork”, and sheets practicing math and handwriting from my elementary years. I’ve kept a small amount, but have dumped bags worth of items. With each bag I feel a little lighter, but still feel overwhelmed by the journey I have ahead of me.
found this gem. It was a “self portrait”. yikes. 🙂
That being said, as I type this, I feel better than I have in the last eight weeks. I feel overwhelmed with all the items that were delivered, but feel thankful for the option of having them (like my piano and my bedroom set from home- I finally have a queen bed in my house!).
This is all part of the journey to simplifying, isn’t it?
For other posts on my simplifying journey, check out: A decluttering update, a simplify update, and memories aren’t in our things.
All month I kept telling Melissa “I feel like I’m not getting any reading done!”, but then I’d go back and count up the books, and realize that I had, in fact, been reading. I got 10 books read in September, so I think it just had to do with my schedule changing up a bit, and feeling like I did have less free time in the evenings to read (I’m at 94 books for 2016 now!). Here are the books I read in September:
Bread and Wine: A Love Letter to Life Around The Table with Recipes: I’ve heard plenty about Shauna Niequist the past few years, but this was the first book that I actually read by her. I loved this sweet story about “life around the table”, about relationships and community, about processing, about heart ache, about celebration… all the things when we invite others to come to the table. I loved it.
Fool Moon: One of my friends has convinced me to read the Dresden Files. This is the second book in this series, and I didn’t love it (I’ve heard people say you have to make it to book 3, 5, or 7 to really enjoy it- I’m not going to stick it out that long but may read one more book the series. We’ll see.) The problem is that I don’t really care about any of the characters, which means I don’t feel connected to the story.
Virgin River, Shelter Mountain, and Whispering Rock: This summer I read Robyn Carr’s Thunder Point series, and this fall I started on her Virgin River series. I’m not as into this series as I was Thunder Point, but the books do make for enjoyable reading at the end of the day!
The Guard: Remember when I was obsessed with The Selection Series? This is a novella about one of the characters from the series. It wasn’t my favorite novella (I think The Favorite and The Queen were my favorites), but I did enjoy this story.
Happily Ever After: This book, by Kiera Cass (author of The Selection Series), includes the novellas I’ve read in the past, along with some short stories about other characters from the series as well. I love when I get to know characters in multiple ways, so I loved this book!
Troublemaker: Surviving Hollywood and Scientology: Leah Remini’s book made for a really interesting audiobook to listen to. I found some of her stories about Scientology really interesting, and there were many times throughout where my heart ached a bit for her.
Savor: Living Abundantly Where you are, as you are: This is another book by Shauna Niequist, and is written as a year long devotional book. It took me a bit to really realize that, as I was listening to it and not reading it, but I loved it so much that I kept going anyways. I love the way that she is real and puts things we each struggle with into words.
Catching Fire: Each year I listen to the Hunger Games Series in the fall, and at the end of last month I kicked that off with the Hunger Games. In September I listened to Catching Fire- I don’t get sick of the books, and could listen to it again right now!
Now it’s your turn to share! Do you ever read a specific book during certain times of the year? What should I read next?
Disclaimer: I received a sample of both the 2Toms Stink Free Laundry Detergent and the 2Toms Stink Free Shoe & Gear Spray to review as part of being a BibRave Pro. Learn more about becoming a BibRave Pro (ambassador), and check out BibRave.com to review find and write race reviews!
I’m assuming most of you don’t want to have smelly clothes and shoes, right? And I’m assuming you don’t want to have your work out clothes smell even when clean? Well I, like you, definitely don’t want to be that smelly exercise-r, and was quick to jump in and volunteer to test out 2Toms Stink Free Laundry Detergent and 2Toms StinkFree Spray.
I tried out the laundry detergent first. I took a load of workout clothes (and clothes I had done yard work in-ick!) that had been stacking up for almost two weeks and was eager to see how the detergent would work.
I put it in the washing machine and then threw my clothes in on top. I ran the cycle and was eager to see how things turned out. One thing I love about the place I live is that I have a clothes line outside- SO FUN!
Once the clothes were done being washed I hung them outside to dry in the sun, and noticed that they smelled so fresh and clean when they had dried!
BUT, an additional test was needed- how did the clothes smell once I started exercising again? I feel like sometimes clothes feel fine, but once they heat up again with exercise, the smell can come out strong, but these clothes continued to smell great!
I also tried out the 2Toms StinkFree Shoe & Gear Spray. My running shoes are new right now, so I couldn’t try them on those shoes, but did try them on an old pair that got really gross after being soaked in Central Park (and then not being able to dry for quite some time- blech!). I just sprayed it on into the shoes, and it worked well! I could definitely see myself bringing this spray on trips where I’ll be working out repeatedly, or doing something like hiking!
I love that both these products contain no perfume in the formula, and helps to remove bacteria that causes odor! Both these things are things I can get behind!
Now it’s your turn to share! What item of clothing holds smells the most? Which gear items could use the StinkFree Spray?
Welcome officially to fall! I rung in fall with several days of 85-90 degree weather, but it cooled off a little bit and now fall has officially started! I thought since my blogging has dropped down a bit, I’d do a little “currently” post to catch you up a bit!
Currently drinking: Target’s Apple Cider Donut Coffee. My co-workers and clients keep talking about how good my coffee smells, and I have to agree! It’s really delicious as well, and I’m excited to drink it throughout the fall!
Currently eating: Pumpkin Spice Life (oh my gosh- it’s SO delicious!) and egg rolls. I get egg rolls from the local farmer’s market a few times a month, and this past weekend was the market. I’m so sad and am enjoying the last of my delicious egg rolls for awhile.
I may also be eating all these snacks. Because, fall.
I also just wanted to share this- Reese’s Peanut Butter Cup Smores. Yes. It’s a a thing and I love it!
Currently listening to: Mockingjay! One of my “summer is over” treats once September hits is to listen to the Hunger Games series each year. I love the books and could read them over and over, but try to limit myself to once a year. Podcast wise, I’m loving “What should I read next” and the afterbuzz TV podcasts for my favorite TV shows!
Currently watching: As I’m typing this, I’m watching Dancing With The Stars. I’m currently (slowly) making my way through One Tree Hill, and I just watched the first episode of Designated Survivor, which I really hope will be good!
Currently reading: The Virgin River Series by Robyn Carr (specifically book 3 “Whispering Rock”), as well as “Free to Fall” by Lauren Miller.
Currently reviewing: As part of my partnership as a BibRavePro, I get to test out all sorts of fun products! I am currently reviewing the Rudy Project Sterling Helmet, Generation U Can Snack Bars, and 2Toms Laundry Detergent. I can’t get over the pretty color of the helmet, and my clothes are feeling so fresh with the laundry detergent! I purchased my own snack bars after eating the box of bars I was sent for free, and they arrived in the mail a few days ago. They’re delicious!
Currently excited for: Trivia night this weekend (it’s a once-a-year thing, so I’m looking forward to it), as well as a visit with my brother in a few weeks (I haven’t seen him since Christmas!!).
Currently smelling: My apple cider candle that I’m burning. It smells AMAZING!
Currently wearing: Mint Candy Apple Nail polish, with silver sparkle on top! This reminds me of a little robyn’s egg 🙂
Currently loving: I’m loving all the fires I’ve been having with friends lately! I’ve had anywhere from 1-3 fires a week since the beginning of August, and it’s so peaceful and relaxing. I’m also loving fresh Farmer’s Market Flowers. Again, this week’s patch is the last fresh flower bouquet that I’ll be getting until spring (so sad!!), so I’m enjoying it as best as I can!
Now it’s your turn to share! What’s a “currently” in your life right now?
Disclaimer: I received a Rudy Project Sterling Helmet to review as part of being a BibRave Pro. Learn more about becoming a BibRave Pro (ambassador), and check out BibRave.com to review find and write race reviews!
Bike safety is INCREDIBLY important to me. I don’t think I’ve really ever talked about this on the blog before, but in college a friend of mine was killed while he was out biking. It really shook me up, and I think about him at some point almost every time I get on my bike. I absolutely love biking, but I recognize that it definitely comes with its risks.
As I’ve partnered with Rudy Project the past few weeks while testing out their Sterling helmet, I’ve thought a bit more about the things I do on my bike to try to increase my level of safety, and I thought I’d share them all with you!
I wear my Road ID. In case something were to happen to me, my road ID ensures that people/the hospital knows my name, age, the fact that I have POTS, and has contact information for three people in my life. You can actually see it connected to my left shoe in the picture above!
Bring plenty of food and water. You don’t want to get dehydrated on a ride, especially if it leads to you feeling dizzy or light headed. I also “prepare for the worst” and if I needed to walk a few miles to someone, I’d want to make sure I had enough food and water to do that.
I only have one headphone in at any time. When I’m out biking, if I am listening to something, I only have one ear bud on my headphones in at a time. I make sure that my left ear doesn’t have anything in it so I can still be attentive to people, dogs, and cars around me.
I bring a pepper gun. I try to bike in areas where there are plenty of other people, but occasionally I go a few miles without seeing people. Having pepper spray or a pepper gun helps me feel a bit more safe.
Wear bright clothing! I tend to wear a bright yellow or bright pink biking jersey, and for cooler weather I have a bright yellow biking jacket. I want to be as visible as possible on the road! My new Rudy Project Helmet is definitely helping with this too!
One of my favorite things about the Rudy Project Sterling Helmet is that the colors are so bright that you won’t blend in to your surroundings. On a bike, you want to stand out, and this helmet helps with that!
I can’t say enough good things about this helmet. There is a mesh vent on the inside so my head didn’t get hot while riding, which I loved! You can see it through the vents in the picture below!
There’s also an adjustable band along the back that you can tighten, making the fit absolutely perfect!
The Rudy Project Sterling Helmet has a removable visor and bug net which make the helmet and biking experience that much more comfortable!
I can’t believe that I’ve never heard of this helmet before, but I’m now a HUGE fan! Safety when you’re on the road is so important, and I’m glad that companies like Rudy Project exist to help us all stay safe. If you’re a biker, please check out this company… and please make sure you are safe on the road!
Here’s their website, their twitter, and their instagram!
Now it’s your turn to share! What are some ways that you stay safe while biking or running?
Disclaimer: I received six Generation UCan Snack Bars to review as part of being a BibRave Pro. Learn more about becoming a BibRave Pro (ambassador), and check out BibRave.com to review find and write race reviews!
Hunting for healthy snacks and bars to eat before my morning workouts can be tough, especially because I’m lactose intolerant and try to avoid dairy. I’ve heard great things about the company Generation UCan from several runner friends, so I was interested in trying their snack bars!
I loved the flavors that came in the pack: coffee, a cinnamon roll flavor, dark chocolate, and a peach one. I don’t even know which one was my favorite!
One thing I was curious about was what made this bar different than your run of the mill protein bar. The UCAN snack bars are “steady energy bars”, and not protein bars! The bars are made with SuperStarch, which is actually a slow releasing carbohydrate (not a protein), meaning it doesn’t cause a spike in your blood sugar levels. The mix of protein, fiber, and carbohydrates allow it to be a steady energy bar, which I love!
look at all that good stuff!
When I opened it, I was a little surprised by the look of the bar. I’m not sure what I was thinking it was going to be, but the look below was unexpected.
I was a little worried that it would have the chalky or powdery taste that some protein bars have, but I was pleasantly surprised to find that that was not the case at all. The texture was in no way an issue for me. Another pro who was testing it said that she warmed the bar on her hand a bit and that helped her with the texture.
I had the peach passion flavor as an afternoon snack, and ended up feeling so full that I wasn’t hungry for dinner for about three and a half hours! It was delicious!
I also enjoyed the coffee flavored snack bar before an early morning run, and was happy to find that it settled well in my stomach! I only let it sit about 15 minutes before heading out, but I didn’t get the heavy/undigested feeling that I occasionally get when I eat before runs. It sat wonderfully and fueled me well throughout my run.
I also kept a few bars in my drawer at work for moments where I might end up having to miss lunch. This bar kept me full and helped me get through my afternoon. Not something I would want to do regularly, but having a good bar like this for those emergency moments is so valuable!
You can purchase GenUCan products on their website! Code BIBRAVE gets you 15% off any product! And with that, I’m off to purchase more snack bars!
Now it’s your turn to share! What do you look for in a snack bar or a pre-run fuel?
This past weekend was so wonderful, but I’m going to specifically talk about Sunday afternoon and evening. I don’t have many friends who bike, but one of my couple friends just got bikes, and got a trailer for their little one so she can join in too. Naturally, I’m enjoying having some friends to bike with, especially as my season is winding down (and my pace/distance doesn’t matter so much). This past Sunday we went biking on the Monon in Indianapolis, and it was awesome!
I love all the flowers and weeds that come out in the fall (my allergies don’t like it so much though…), so getting time on a trail this fall has felt important. We set off just after noon, and the sun was shining and birds were chirping. The weather was really ideal (not too humid and in the 70s!) and the trail wasn’t too crowded (meaning we could easily pass walkers and runners without having to slow down too often).
I’m currently reviewing the Rudy Project Helmet as part of my partnership with BibRave, and this was the first ride I had in the helmet. The helmet was SO comfortable right from the start, and I feel like all the bright pink can’t hurt anything either 🙂
After the 12.5 mile ride, we met went out to lunch. If you’re in the Carmel area and you enjoy Chinese food, check out Mandarin House! They had a delicious buffet and I loaded a plate (and then went back for seconds… and thirds…) with all my favorites!
The evening ended with dinner and s’mores around the fire at my friend’s house (my portable fire pit I got for my birthday has been AMAZING! I’m trying to take advantage of all the beautiful outdoor weather I can get before the days get more and more chilly (and rainy… and windy…), and Sunday felt like a great day to do it!
Now it’s your turn to share! What’re you doing to enjoy the last few weeks of really gorgeous, warm weather?
