Switching Blogs

I have decided to change my blog over to WordPress. One, I just really like the look and feel of the WordPress blog. Second, I wanted to refresh and shift my focus a little bit, so I figured it would be best to just start from scratch.

I will still leave the content up over here for the time being, but all new posts will appear at chronicwriting.com.

Please join me at my new site and let's continue the chronic-illness journey together!

Walking with Fitbit HR and the MapMyWalk App

I found a post that I started last June about fitness options for POTSies. The post was about 75% complete when I am assuming I forgot I had started writing it. I think I am going to finish it and post it because it has some good info, but right now, I am going to talk about what I am currently doing (read: the workout my doctor forced me to start this week).

At this point in my POTS "tenure," I am able to stand and walk in small spurts. The things that keep me from working out more than anything are my dizziness, heat intolerance and fatigue ... oh, how very tired I am. My doctor told me she wanted me to start walking every day at least 10 minutes and then build up from there when I am ready. Luckily, with the spring-like weather, I have been able to walk down the street and back with my mom or my brother this week.

I like to track my workouts so that I can see my progress. We did this in cardiac rehab, and it has stuck with me. There are two tools that are really making the tracking so easy for me: my Fitbit HR and MapMyWalk.*

Fitbit HR

I love my Fitbit HR and have found it to be very accurate. I have a Polar FT4, which I still highly recommend, but I was getting a little sick of putting on the chest strap every time I needed to monitor my HR. I've been wanting a Fitbit for a while — especially for the sleep tracking — so once I saw the HR version had come out, I was game.

The Fitbit has a way to track exercise, but for what I am wanting to track and monitor, I use an app to track my workouts.

This is what the HR chart looks like on the Fitbit dashboard. It gives you your HR average, and let's you slide along the chart to see what the specific HRs were throughout the workout. This was a pretty good walk for me HR-wise!

MapMyWalk

This is where MapMyWalk comes in. I use the app on my smartphone and just carry my phone with me when I walk, which I recommend you do anyhow if you are walking alone. I hit "start workout" on the app, and it uses GPS to track my route, distance, speed, etc. You can also set it to give you updates on how long and how far you have been walking, which I love! Back in my pre-POTS days I would run with an app that did something similar. I just prefer knowing the app will tell me what's going on so I'm not watching the clock.

Once I get home, I transfer my workout data to my Fitbit dashboard, which then incorporates my HR data for the time frame that I was working out. The one downside to the manual exercise tracking through the Fitbit interface is that is doesn't let me edit seconds. If I worked out for 11 minutes and 20 seconds, I can only choose 11 minutes or 12 minutes. I'm sure for most fitness gurus seconds doesn't matter, but we know that for us the seconds can matter.

So to work around this, and to help me see the data the way I want to without having to consult both apps later, I've been putting the data plus the HR chart together in an Excel doc. This will also give me a place to easily print from to provide info to my doctors.

Do you track your exercise? What tools or apps do you find most helpful?


* I have not been paid for my review or recommendation of these products. This is just based on my personal experience and opinion.

Back in the Saddle Again

We've already established that I'm the worst blogger of all time, yes? If nothing else, I am SO good at ignoring my blog. (Apparently though, I have nine drafts started, so I must have considered posting at some point.)

So let's see, what have you missed? I still have POTS (duh, right?); it's been three years now. My symptoms haven't changed at all in the past year and a half or so, which I guess is kind of a good thing. I would love some of my symptoms to go away, but I certainly don't need to add any new ones, so that's silver lining for sure.

"Back in the Saddle Again."
Photo Credit: Rennett Stowe via Compfight cc

I wasn't really in the mood to see doctors last year, so I didn't. Sometimes you just need a break. However, I only have my super-awesome insurance for a few more months, so I am back on the doctor train to make good use of it while I have it. I saw a new neuro in March for my constant dizziness. He is sending me to physical/vestibular therapy. He really believes my neck and vestibular dysfunction and probably some silent migraines are the sources of my dizziness. I start therapy next week, and I'm anxious to see how it goes. One of my other new docs said that she has patients who have really had good results from vestibular therapy, so I would be more than happy to add myself to that number.

I will keep this short for now. Just wanted to put an update out there. Since I am trying some new things for treatment, perhaps that will motivate me to keep writing. I suppose only time will tell. :)

Response to POTS and Integrative Medicine on Katie

Two posts in one day. I'm such an overachiever.

There was a segment on Katie yesterday about integrative medicine that briefly mentioned POTS. I have seen a multitude of reactions to yesterday's show; I felt inclined to give my reaction and thoughts on the subject.

Yes, it is no secret that I am pro integrative medicine, but I still believe any medical treatment should be met with critical analysis, research and knowledge. From that perspective, I do agree that we, as a POTS and chronic illness community, should bring a certain amount of skepticism to any claims or reports we see on TV.

With that being said, here are a few things I feel compelled to comment on.

1. Wendy, our fellow POTSie, never claimed to be cured in three to five days.

I have noticed the skepticism of some is rooted in the fact that this woman claimed to get better in three to five days. What Wendy said was that her severe neuropathy pain at night was gone in three to five days. To me, saying that an herb made neuropathy pain better within a few days is no different than someone who says his/her tachycardia was better within a few days of starting a beta blocker.

Wendy also said that her circulation and blood pooling issues were significantly better after acupuncture and that after a combination of treatments, she is feeling much better. So those are the facts we know.

What we don't know is: how long Wendy suffered with POTS, how long she underwent acupuncture and treatment, what symptoms or comorbid conditions she has/had, what her POTS trigger was, what "feeling better" means to her (she never used the word cure), what she has to do to sustain her current condition.

So you don't think I am just up on a soapbox, when I first saw this segment, I felt a little jealous at first and found myself comparing myself to her in a defensive way. But I rewatched the segment a few times and reminded myself that I don't know her journey — past or present.

I would just hate to alienate, judge or invalidate someone else's POTS experience just because she is doing a lot better. Rather, we should embrace every fellow Dysautonomiac, no matter the severity or current state of his/her condition. If someone happens to be feeling great or found a treatment that worked, rejoice with him/her and draw hope from it.

2. This is TV — and ultimately — entertainment.

Keep in mind this segment was less than 10 minutes long, and the focus was Chinese and alternative therapies. The mention of POTS was secondary and a small blip. There was not time for details, so of course, the success and ultimate result was where focus was placed. Bringing in a patient these treatments didn't work for or someone who wasn't well into treatment wouldn't have served their purpose of shedding a positive light on the topic. That's the nature of entertainment.

3. I am grateful for ANY awareness and exposure that POTS receives.

The mention of POTS was very short. The reality of the syndrome, and its debilitating nature wasn't explained. To a certain degree, the POTS most of use know and don't-so-much-love was minimized.

Those are all fair statements. But in my attempt to find silver lining, POTS was mentioned on national TV! I am grateful for that. I am grateful that Katie Couric is starting to hear about it. I am grateful that someone watching who wasn't familiar with POTS might have looked it up after the show to learn more about it.

Sometimes awareness comes in baby steps, so I am happy with this tiny step.

4. We all have different paths and results.

We won't all get better. If we do, we won't all get better from integrative medicine. That's the nature of a syndrome like ours. However, if this treatment trajectory worked for one person, it will perhaps work for some others. Personally, that gives me hope for myself and for my POTSie brothers and sisters out there.

Two Years and Counting...

I am a little late with this post, but I am on the verge of dizzy-free right this moment, so it seemed like a good time to finally write this post.

Last Thursday was my two-year POTSiversary. It was a bittersweet day.

This is what the past two years has felt like — a big, dizzy blur. :)
Photo credit: Smicko on freeimages.com

In one sense, I've been sick now for two years and have lost a lot: job, condo, money, independence ... my ability to wear a size 4. I became sick at the age of 29, and I am now 31. Something about that feels like more than two years, like I lost a chunk of my youth.

On the other hand, I remember that first day, week, month with POTS so vividly. While I am not quite where I want to be from a functional and symptomatic standpoint, I was absolutely miserable and scared in the beginning.

I remember laying on my parents' couch the first day my POTS hit. The tachycardia was intense and constant, no matter what position I was in. I was so lightheaded I couldn't sit up. I felt like I was on fire, and the shakes and muscle spasms were relentless. I slept maybe 2 or 3 hours per night. Taking a shower was the most challenging thing ever.

Looking back, I also now realize how my body told me what it needed. I was nauseous and had no appetite, but my mom of course was insisting I eat something, anything. For some reason, I wanted bacon. I remember my mom bringing me a plate full of bacon. That and Gatorade was all I wanted that first day. (Hello, salt and electrolytes!) I was so hot that I couldn't stop drinking Gatorade and water. When I finally saw a doctor who told me about POTS, electrolytes and staying hydrated, my reaction was basically, I can't help but do those things! It was my natural inclination.

Ultimately though, I have made it. I have made it two years with POTS. I have been through a lot these past two years, but I have survived. It hasn't killed me, and I am stronger. I am so thankful that God has brought me this far!

The Power of Music: My Chronic-Illness Playlist

I'm sure you've all experienced the power of music firsthand. In an instant, a song can transport you to a time, place, memory or feeling. Music can lift your spirits or even help you wallow. Music can make you feel understood or be a source of strength.

There have been various studies with regard to music and healing. Music therapy is a growing field, and there are about 5,000 board-certified music therapists in the U.S., according to this CNN article from August of last year. One of the things I really love about music is that a single song can speak to people in so many different ways.

Photo credit: Stefan Gustafsson
www.stefangustafsson.com

After watching Carole King and Sara Bareilles perform two of their great hits together during the Grammys Sunday night, I was inspired to create what I would consider my POTS playlist. I have listed the tracks below, along with why it is on my playlist or the line that speaks to me the most. I will start, of course, with the two songs that inspired this post.

What would be on your chronic-illness playlist and why?


1. Beautiful by Carole King:"You've got to get up every morning with a smile on your face and show the world all the love in your heart."

2. Brave by Sara Bareilles: "Maybe there's a way out of the cage where you live, Maybe one of these days you can let the light in, Show me how big your brave is."

3. A Hard One to Know by Benjamin Gibbard: Mainly I just love this song, but this line seems especially appropriate, "I toss and turn but I just can't sleep."

4. Shake It Out by Florence & The Machines: "It's always darkest before the dawn."

5. Act Nice and Gentle by The Black Keys: "I don't need no luxuries, 'Long as you are understandin', I'm not difficult to please, Act nice and gentle to me."

6. For You Now by Bruno Merz: Just listen to this entire song. The whole thing is great.

7. Flying by Green River Ordinance: This song just puts me in a good mood. I think it is the fiddle... I'm a sucker for a fiddle.

8. We Are the Tide by Blind Pilot: "Don't you know you're alive?"

9. Waited by Kylie Rae Harris: "Well its got me all sideways, jumping the track, but this is my life, taking it back."

10. Calmer of the Storm by Downhere: While most of the songs on this list are more mainstream, this one is my favorite from the Christian music genre. Calmer of the Storm is one of those songs that has helped me through some really hard days.

11. The Sound of Settling by Death Cab for Cutie: "Our youth is fleeting, Old age is just around the bend."

12. You Can Come to Me by Helio Sequence: This is another song that has multiple lines I love, but I especially love, "Finding out that you what you want is not what you need."

13. That Old Black Hole by Dr. Dog: "I don't want to fight, but I'm constantly ready, And I don't rock the boat, but it's always unsteady." (Sounds like fight-or-flight and vertigo to me!)

14. One Little Light by Gary Jules: I really like this song in general, but of course I have to include a song on the list that mentions having no spoons. "No meteor, no moon, no cotton, no spoon, Just a little light in the sky."

15. Let That Be Enough by Switchfoot: "And all my sand castles spend their time collapsing."

16. Ooh Child by The Five Stairsteps: "Ooh-oo child, Things are gonna get easier, Ooh-oo child, Things'll get brighter."

Healthy Eating: Pecan Coconut Granola {Recipe}

I try hard to eat healthy in order to nourish my body and in hopes of coaxing it back to health. I don't associate myself with a specific label when it comes to my diet. Aside from not consuming dairy, I am not strictly paleo, vegan, raw, etc. I do love to read cookbooks and blogs by people of these dietary persuasions though! They offer ideas and recipes that fit well into my diet, so I am going to start sharing recipes on occasion that I have tried and enjoy.

This first recipe I am going to share is very easy and doesn't require a lot of time on your feet. Plus it is something you can make once then enjoy all week. I find that using a "spoon" to cook is much more worthwhile when it will be eaten for a few days.

This granola is inspired by Ella over at Deliciously Ella. I have mentioned her blog before. Seriously, check it out if you aren't familiar with her. She is super talented and even more inspiring. I didn't have all of her ingredients on hand, so I winged it with what I had.

Her original recipe would yield more than what my recipe did. I filled a 12-ounce mason jar with the finished product and ate whatever didn't fit. I probably really needed a 16-ounce jar, but I didn't mind taking one for the team and eating some on-the-spot. My adaptation appears below:


Pecan Coconut Granola

1 cup rolled oats
1 cup pecans, roughly chopped (or cute, itty-bitty guys left whole)
1/2 cup unsweetened shredded coconut
1/2 cup sprouted pumpkin seeds
1/2 cup raisins (add more if you would like)
sea salt to taste, optional

2 T. coconut oil
2 T. maple syrup
2 tsp. cinnamon

Preheat oven to 350 F.

In a bowl, mix together the oats, pecans, coconut flakes and pumpkin seeds.

In a small saucepan, heat the coconut oil, maple syrup and cinnamon until melted and combined. This only takes a few minutes; I whisked it to help it combine and keep it from burning.

Pour the syrup mixture over your oat mixture and stir to coat. Spread out on a baking sheet lined with parchment paper.

Bake for about 20 minutes, stirring a few times while it bakes (watch it closely so it doesn't burn). At this point, add a bit of salt of if you would like. Let it cool completely on the baking sheet, then you can mix in your raisins and transfer the granola to a jar or storage container.

Enjoy! I thought it was especially good with unsweetened, vanilla almond milk.


A few notes:

1. I was not exact at all with the cinnamon-syrup ingredients. I didn't feel like measuring, so I eyeballed it. It might have been a little more than the amounts listed, but you can't really go wrong with maple syrup and cinnamon.

2. I wasn't patient enough to wait for the oven to preheat, so I put the granola in before the oven reached 350 F. Had I waited, it might have been done before 20 minutes. Also, if you double this recipe or add to it, the timing might change.

3. I took my granola out when it smelled like the pecans were roasted. I didn't want them to burn, which nuts will do very quickly if you aren't careful. My granola still looked shiny like it wasn't dried yet, but it was fine once I let it cool.

4. Since the space in my jar was limited, I didn't mix my raisins in. I decided I would just sprinkle some on top one serving at a time.

5. The sea salt is totally optional. Ella doesn't include salt in her original recipe, but in true POTSie fashion, I like to add sodium where I can.