An overdue Happenings 

Summer’s have been rough for sometime:  between losing pregnancies, being so far away from family that you miss out on the normal summer festivities or just the illnesses…but this summer was different. As I sat in a small historic church in Vermont listening to former pro snowboarder (who suffered a traumatic brain injury) talk about children in the same boat who lost their friends upon injury…were isolated, I realized when I felt so much better this summer. It was because I had a community and thus I was living with a disease and not just suffering from one. Back in the desert I don’t think I had an adult conversation (in person) from nearly my diagnosis to when we moved . I had thought being a part of a couple groups that maybe I’d have a visitor with a tabloid mag or invite for coffee or a walk but that never happened. Granted I was so grateful for texts and social media interactions but just not the same As a naturally shy person adding a disease on top of that I simply did not have the energy to step outside my comfort zone and thus I had all the time in the world to just dwell on my illness.

As I mentioned in previous posts, I directly went to stay with my aunt and cousin in Plymouth MA ( small waterfront/pilgrims/historic/happening town). My day to day life there consisted of walks to the waterfront with family and friends, walks to the juice bar or health food store)I really think that hugely upped my energy), play dates and seashell hunts with my little guy.  

 
Some of the highlights:  with my cousin taking Ry on a pirate cruise, a wedding shower for one of my best friends, play dates with my friend and her son I hadn’t met before, watching my unt run Her first half, Red Sox Game with my aunt, grad party, cookouts, shopping trips, 5ks (the color run and July 4th) and Wanderlust in Vermont (yoga festival -more on that later).  

    
   

As far as Treatment. I had upped my pekana detox drops, as well as starting to treat a probable babesia co-infection with abab. Yes I was busy this summer but I did take breaks, had to cancel some plans but that was ok because I also had company and more opportunities if I had to miss out. I’ve reverently had to deal with some other health stuff that I’ve had to alter treatment so im not doing as well but we’ll get things figured out. 

Our new town: aside from our yard which is a Lymies worst nightmare (overgrown yard landlord is dragging heels doing a thing about) and some other household issues they haven’t fixed yet we love this town. There’s so much to do and many many health food options. One of the health food stores even has Kombucha on tap.  

 We’ve gone to a minor league baseball game, went to a dog swim, there’s many yoga options…a whole new world.

What else:  we did travel back to California for a wedding of good friends) and then to MA to go to another wedding. Although the travel did take its toll I’m so grateful I was able to attend and I think a lot of that was due to my summer of healing.  

   
Up next:  I’ve been hunting local LLMD’s which I think I’ll be able to get an appointment by end of this month or beginning of the next. I did have a phone consult with my San Diego doc so that will hold me over until then.

Wanderlust and the rest:  In July I won a four day pass to a yoga and music festival in Vermont. I went alone, met another yogi online hitched a ride and set off not knowing what to expect but knowing I needed this. One of my favorite classes was Amy Ippoliti’s Happy Hips black light class. She’s an amazing teacher that infuses humor with her spot on teaching. I learned there that I can do more than I think. I took some amazing mediations classes, did a SUP yoga class, an Ariel class, listened and danced to some great music like MC yogi, did a hike with raw hot cacao drink and healed. I had spent so much time with the word:  fight that it was exhausting. Yes I need to fight but I need to heal and yoga and the community that surrounds it is so healing. This dawned on me during my “one word” bracelet making class. My new word is HEAL.

So spoonies my summer ramblings:  I want to share what I really learned :  find a community (and people surround those of us suffering from illnesses) and live with disease instead of just suffering from until that day you can heal from it. Yes we fight and beat the Lyme bastard buggies but do what you can to heal your body and soul.  

  

Color Run Fun! A race recap

A little over a week ago I ran The Color Run Shine with my team Gronk’s Pet Unicorns. The run was located at Gilette stadium .. See the association there 😆? I had done a color me rad a couple years ago but this one was the first from this company. I was pretty excited they incorporated a glitter time zone. Everyone needs a little sparkle in their lives.

First unfortunately: the negative. Packet pickup was a mess. They had offered two days prior but both at Gillette in Foxboro and since we had a busy weekend we couldn’t make the 45 minute drive up there. Apparently the color run thought more people would take advantage of the other days because we waited at least an hour in line. There was music playing and enough of us so it wasn’t too bad we could switch out to go to the bathroom, shop or gets snacks. When we finally got up there to get our bib no one had us sign a waiver and no one checked our IDs even. Probably because they just wanted to get people through the line but still concerning. There were no tags on the bib to denote we had people picking up shirts either and unfortunately I witnessed people taking advantage of that. 

We eventually met up with the rest of our team:  my friend Erin and her family.  This is most of us pictured below sans my cousin, not sure where she went off to. 

The run. They had a DJ type guy at the starting zone pumping us up with music and throwing out swag. There were two different waves: just running or run/walk/cartwheel. We signed up for the latter. We took off an and split into two groups: my cousin, aunt and I and my friend and her family. Even from the start the course (around Gillete stadium/Patriot place/practice fields) was so wide that we had plenty of room to run. My cousin runs track and my aunt who is training for her first half were tough to keep up with with on top of the crazy heat+humidity (Lymies hate heat) but I tried. The color zones were plentiful and the volunteers dolled it out in condiment type bottles as opposed to just packets like in color me rad so we could way better colored. Also they had tarps on the side to roll in. This is where the Color run wins major points over color me rad. Also the “shine zone” that came somewhere around mile 2 was more of a cool sheen than glitter, pretty neat.  

  

  

There weren’t a lot of photographers on course but I did see them at the finish shoot which was filled with music and cheers. Another 5k fun run complete:  take that Lyme.

Brady love:  there were lots of support for our awesome (and innocent I may add) quarter back including myself who had #freebrady in face paint on my arms.  

    That’s our medal we got at the finish…

  • Post run party. My cousin wanted try for some swag so we went over to the stage area. They had tons of free stuff  thrown out including packets of color, music going, a very enthusiastic MC (I don’t know how they have so much pep) .  This was post run prior to party…  And after…..

   
 

Overall a very good time. These runs are very relaxed and perfect for your first 5k, a good time with family/friends or if you’re dealing with a chronic illness like me and want to get out for run/walk and not have the pressure of having it be a timed run you need to push through. 

Grade A-. With 10,000 runners (the MC at the start quoted this) they needed more volunteers at the packet/t-shirt pick up. It got a little chaotic. Other than that it was great:   tons of color, enthusiastic staff, cool medal, music and plenty of space to run if you wanted to. 

 

Get our there and give it a try😎.
Next up:  I’ll have a happenings post of my first full month in Massachusetts and not in the desert hurray!

Happenings 5/6

I keep day dreaming of being better cause honestly I thought I was improving…that little check list of symptoms at my Lyme doc looks better but yesterday I woke up with a fever close to 102 and felt like hot poop left out in the desert sun. I had dreams of adding to my family and running a marathon but after yesterday I feel like I’m never getting better, like this is a life sentence. I haven’t left my house in over a week so I wouldn’t catch any bugs because we have a Disney trip coming up and then I was to headed to Boston to visit family. I had pulled off what I thought was adhesive but was it a tick?? Or did I get a mosquito bite? Or is it still a bad relapse? I’m so over this! Maybe it’s time to sell all my belonging and head to Germany???
Doctors I’ve had a lot lately but I’ll try to give a quick summary. I had my EEG (test done to check for seizures). You lay in a bed for 1 1/2 and they check brain waves etc, they flash a light (strobe type thing) in your face last couple minutes and then make you hyperventilate to try and cause a seizure…fun.
I had my neuro follow up. The EEG was normal. The MRI was “essentially normal”. That meaning they found one white lesion. He said because of my migraine history that is normal. But anyone who’s familiar with chronic neuro Lyme also knows that white lesions are found in Lymies’ brains and that’s why many times Lyme is misdiagnosed as MS. So who knows if they had performed this test before they probably would have found more before treatment…
Next up cardio…he starts to tell me my 30 monitor looked “fine” but we could call in a specialist that could insert a needle through my groin into my heart!!? Huh what you just told me I was fine. I asked about the home apnea study. “Who ordered that” he says. Umm you did? *leaves comes back 10 minutes later* “ahh unfortunately you have apnea. Ding ding ding. I thought so. So he then says “I ah guess running ok”. (He cannot get through one Daggone appointment without his diatribe on runnning”.) “but ahh maybe not the knees the back, causal ok, no competitive, only Olympians”. Ahh sigh.
So the plan is for me to get a CPAP.
Next up my Lyme doc. He looks at the sleep apnea study and it appears off: one of the heart rate averages doesn’t add up and one heart rate high appears too high. It still appears I have sleep apnea but it may not be as severe. I think when we move it may be worth seeing a sleep doc. Anyway the plan with him was to keep where I was with Meds for now and then up the plaquinol when I get home to visit the family so I could enjoy my Disney trip without a herx. (Not sure I’ll enjoy it now but…). I could also take a break from Meds while I was at Disney (Lyme is really a full time job with just med taking and organizing alone). I have a phone appointment with him end of June.
The Move We had thought of next move this summer would be back to all our old haunts and loves in North Carolina but then were surprisingly told that wasn’t possible anymore and we could go to either Kansas or California. But at the last minute there was an opportunity for Quantico Virginia. So this summer that’s where I’m headed. Closer to family and I’ve heard there are many docs in the DC area for Lyme.
Exercise
I’ve had a rough go of it this spring with allergies, many colds and now this…but I managed to do several yoga challenges and fairly regular dog walks. I also did the team sparkle virtual 5k for Rett syndrome. I have been pretty layed up lately.

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Good news: I was selected as a crazy compression ambassador. I mentioned in my tips for running/exercising post that compression socks have been so helpful in allowing me some exercise. I have awful leg pain a lot and this helps. This brand is awesome because they are affordable, made in the USA and come in so many fun colors and designs. Check em out

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What else
While in San Diego I finally got my tattoo that I booked back in December. Buju tattoo is the name of the shop and the owner was from MA too, how perfect. I mentioned awhile back here the idea of the lotus came from the end of my yoga teacher treating while suffering my first miscarriage my yoga teacher includes something about the lotus in my card.

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The idea sprang from there and I wanted to somehow include the birthstones of all my babies. In total now 4 in Heaven and my miracle on Earth. So Brianna designed this: with each color or the flower representing a birthstone…I just love it.

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So to close
I’m not sure how my travel plans and trips will plan out with how I’m feeling..I could use some prayers. I got a nice phone call this morning from an old friend that did lift my spirits some. I hope that I improve some in the next couple days. And if you’re suffering I hope you improve too.

Frustration Nation

So I expressed frustration with doctors on the Facebook wall and it’s just getting worse…..

Let’s back up to my cardiologist appointment. (See last happenings as this was some time ago). We decided to go with a patch monitor to see what the tachycardia at night was all about. Weeks passed and nothing…no monitor. I then get an auto message from cardionet (the monitor I had last go round. Huh I think that’s odd, maybe so patches too? After calling my cardio because I have no monitor yet they say yes it’s on the way…and I’m getting a cardio net because they couldn’t get the patch for the desires four week…fine. NO ONE INFORMED ME. And we tried this one already so whatever:..The monitor arrives and shortly I run out of the hypoallergenic electrodes and my skin was being ripped to shreds by the others. The agent informed me that my RX is only for…wait for it…TWO WEEKS and I need to speak with my doctor to change it before the monitor be changed. So they change it..but it’s like what the heck?!
Moving on to the Neuro stuff. I had my MRI about a week and a half ago. No fun, not that I expected it to be but thanks to yogic breathing I survived without any major panicking. But I did pick up a cold. I do my best at doctors appointments to avoid picking up nasties but there’s only so much you can do. As I was signing in the one, yes one person in the waiting room starting coughing as I was signing it. That cold didn’t last too long.
I was going to drop off my hubby to see his friends who were in town that I’ve known for a bit so I was going to stop in to say hello with Ry. He doesn’t do well at this place, kinda bar like so no high chairs etc. I promised ice cream if we just went and and left. That was ok until we returned back to the car…”dadddddy”. So we stayed. In order to stay busy he was playing with the table peanuts. (You can throw them on the floor there). I normally in my germaphobic tendencies would avoid, especially here were even though we were at a table I doubt the were changed. I wasn’t really thinking about it because the boy was busy and happy and frankly it was nice to be out with familiar faces. But I ate the malaria peanuts…shudder…so the boy could throw he shells on the floor. Now I have a nasty nasty cold. Fever, sore throat, chills…bad. A few days later the boy is sick too 👎👎👎
So adding the colds to what was already a herx reaction from upping Meds and the effects of the MRI (some folks use magnet therapy to treat Lyme) so my adverse reaction makes sense….no good.
I called my neuro’s EEG department last week to see if we could move my April 6th appointment to the 8th just because it would be a little more convenient for us and the agent said my appointment was actually April 1….what??? No it’s the 6th I have it written down several times along with the day and time. He’s supposed to call me back. Never does.
Flash forward to last night where I had another night with anxiety/impending doom wash over me at about 10pm . I fall asleep about midnight and wake up with tachycardia and feeling funny. This morning I had the whole my Brain is being stabbed/pressure headache/limbs weak/feel like I’m going to up chuck… So I decide to again call them.
The woman so rude every time I have spoken with her. Acts like I’m trying to schedule a pedicure for my dog or something instead of test to find seizures. So I ask her what’s happening and why it says the 1st and she says oh no “you’re scheduled for the 2nd”. Now what in the Samuel F💨👂k.?! A third date. She won’t admit she effed up. Now she “has to call all 20 people and see if the will switch”. So as of right now I have no EEG .
And guess what? I’m frustrated…and scared. I’m scared of something bad happening to me in my sleep. And I can’t help but think that these doctors/receptionists would be to blame. How hard is it really to just do your job. When I was working full time, part time..whatever I did my job, busted my tail. Where is that sense of work to ethic?! I still think there’s some sleep apnea going on but my home study only worked 1/3 of the days so I’m not too confident when when we get the results of its accuracy.
Don’t get me wrong I still have hope, I still pray, I’m still going to fight, I still see the beauty in each day…I’m just FRUSTRATED 😕

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Instead of…

We had been toying with a March race for a bit (either Coaster run or Catalina Island) when our pup had that lump that needed to be biopsied so we held off. By the time he (thank God) was all clear the first race had sold out. We had talked about West Coast to-do’s before our (hopeful) move and the Grand Canyon was a biggie on my list. So instead of a race weekend we decided kind of impromptu lets do it.
Planning
This really was the Thursday before we left. Something a lot of people don’t known is the Grand Canyon National Park is infact dog friendly. They’re allowed all along the South rim trail and a special road called the Shoshone that opens up to a great canyon view. But apparently it was a big weekend to head up there because all of the dog friendly hotels that had decent reviews were sold out. Then we came across the Grand Canyon Railway and hotel. The hotel itself wasn’t pet friendly but had a pet resort attached. So we wouldn’t
bewith our furry family but they could play with dogs right next us and we could take them out to breakfast in Williams before we left and walk around.

Williams
Williams is located about an hour north of the Grand Canyon. Located on historic Route 66, the town is adorable. Now for those of you with little girls who’ve watched Frozen a million and a half times, my 2 year old guy has watched Cars more. This town transports you right into Radiator Springs.

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2015/03/img_7455.jpg (top is where we ate after the Canyon, the diner is ok- good atmosphere just ok food, I’d stick with a milkshake etc here) (bottom is the Bistro 66, great Italian food beer and wine brewed locally). The people were very friendly. I was surprised how wilderness like it was. A real mountain like town, snow on the ground. I expected desert vastness…

Chu chu

My son was so excited for the train. The train takes you right from Williams to the Grand Canyon. About an hour and half ride each way. This is such a great idea for kids, makes it more than just mommy and daddy want to go on a hike trip but an adventure. We started this adventure with an old West Cowboy show at the Depot.

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After this show it was “all aboard”. The ride featured cowboy singing old country like Johnny Cash. Our train attendant Becky was great. She was so informative about the history of the train, the area but pointed out so much wildlife such as: prairie dogs, antelope, Ravens, and other animals like cows and horses. She told many a cow joke too. The ride was not just for kids as there was a cafe car that sold beer and wine and treats, there was so much to look at. It was also great for me because I could rest up for our ride.

South Rim Exploration
Seeing the Grand Canyon was on the bucket list and it more than exceeded my expectation. I’m not sure words will do it justice. It’s definitely one of God’s gifts for us to admire. Our guide warned us and I felt it, the elevation. We were at about 7,000 feet. Now where I live is not at sea level…close to 3,000 ft in areas but I felt it. But I did as the guide suggested and drank plenty of water (and Nuun). Having Lyme makes you more sensitive to high altitudes but I listened to my body and felt decent. Some highlights: snowball fight with my son, seeing a bunch of mule deer, great views and crisp air. After the rim trail and the trail of time (seeing and learning about various ages of the rocks) we did some of the Angel Loop trail into the Canyon. We didn’t go too far mainly because it was icy. If we had proper hiking boots, poles etc and didn’t have a little one it may have been possible. Plus I was getting pooped.

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After a stop in the gift shop and some snacks it was time to board the train.

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Oh no robbers!
The ride back we got more great info from Becky. We learned and saw some volcanoes (some near Williams are not extinct!). About an hour or so into the trip the train stopped and cowboy robbers got us. (It’s also the way the performers get tipped, you have small bills visible).

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2015/03/img_7508.jpg Ry got to keep a bullet from one of the cowboys😬.
The next morning we picked up our pooches and walked around Williams one last time. We had breakfast at Grand Canyon coffee. Many patios in town are pet friendly.

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Overall great trip. The hotel was nice but not too fancy you worried about having a little one with you. The only issue we had was rude neighbors. They woke us up 11:30pm the first night and then had their kids playing in the hallway at 6:30 am. Had I known they weren’t checking out I would have moved rooms. But other than that adding the Williams stay made it perfect for the little one and for me with a chronic illness it gave me a chance to rest before and after the hike. I think the gentle train ride helped eased motion sicknesses too I would of felt in a car. Im glad we did an “instead of”
Next up:
Finish up my heart monitor, and a MRI this weekend kicks off my marathon amount of appointments before we leave. I’m getting nervous. Until next time…💚

Happenings 2/22

Well, this will be my first post at age 35. While things aren’t the easiest right now, I’m happy to be here. More on my birthday later.
I had my cardiologist follow up a little over a week ago. Now mind you I mentioned nothing about running, my primary reason to go there was to go over my 30 day event monitor. We walk in and he says “so sorry about running, I know you were mad” (see do no harm post from early fall/late summer). “Running is bad for you. Healthy guys they go run marathons and die. Bad for knees. (Picture this in thick Japanese accent). Jogging ok 5k maybe 10k but anymore more for Olympians ok”. Ok man we aren’t even here for that. I jog/walk/run 5ks when I can during treatment and I have no urge to discuss my post Lyme remission running plans with this guy. Ok so he asks about my erratic heart rate. I tell him still while I sleep. “So maybe we get 30 day monitor”. Hello that’s why we’re here. We tell him we did this and it’s like him pulling teeth to find results. After he does it just shows more sinus arrhythmia which is normal for my age. Long story short I will be getting a different monitor and I just finished up the at home sleep study he ordered. That was a pain in the tush.
Next up on the doctor front. Need to schedule EEG and MRI for neuro. It finally was approved by insurance but we’re running out of time here and trying to squeeze all this in while hubby is going through a busy work period is proving difficult. Then I’ll have a cardio follow up, a neuro follow up and one last Lyme doc visit in April.
How have I been feeling? Well after my ER visit I was doing really bad. The fatigue was unbearable and the nausea even worse. I also developed some canker sores including one on my tongue that made eating near impossible. Thank God for the extra long weekend because I couldn’t get off the couch really from Thursday-Monday when I felt a little better. Why was this? Who knows? Stress, not going out of town in a month, who knows. Finally on Presidents’ Day the nausea let up a bit and I said ok let’s do something. So I put on my seabands and we went to a festival up in Kernville.

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I continued to improve after that finally able to get back out on my walks. That’s another thing that may of set me off, I was trying to walk every day instead of every other. I was able to do chores and enjoy my birthday.
We decided to head up to Kennedy Meadows area to find a little hike. I packed my knee brace, some snacks and NUUN and we went off. On the way we stopped at a small general store, pet a couple puppies talked to a fellow Pats fan and spoke withy the owner of the store. She told us we could find the Pacific Crest Trail off of the campground. Having just read Wild by Cheryl Strayed I was excited. As we set off I was reminded I have a long way to go to regain my physical fitness that Lyme disease has hindered. I listened to my body, took sips of NUUN and rested when I had to. I’ll get back some day to the hiking that I used to enjoy… Strenuous jaunts that included trails where hands were needed or if it seemed to easy I’d jog… Anyway the reward at the end of trail was a beautiful footbridge. I love being outdoors with the family.

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Next up running wise? We’re still debating doing the Coaster Run at Knottsberry farm. But first I plan on signing up for Team Sparkle Run for Rhett virtual 5k. Rhett syndrome is a a disorder (not genetic) that mainly affects young girls. It’s a neurological disorder that severely impacts the way they can speak, walk, eat etc. I have no idea what these young ladies go through but having neuro Lyme I know a bit sometimes how it is to feel trapped in your own body. Registration ends tomorrow (2/24) so I urge you to sign up. You can run, walk, roll this whenever until mid April.

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Last up: and the winner is: Nicole Cepaitis. Please email: info@newportskinnytea.com do claim your prize. Just reference Valerie @flowingthroughthefight.com

Until next time💚

Tips for running/exercising with Chronic health issues

So I thought before I posted my race recap for Rock N Roll Arizona I’d write about some tips on how I was able to do it. I post these recaps with huge smiles on my face, but it takes more than just a smile for me to get there. I’ll be talking mostly in terms of the race but this goes for other workouts too, even walks with the dogs.
First off Prep If going to work out to the point of a sweat, even a light one I make sure that the day before I REST. This worked out well because we had a long ride the day before so I made sure to pack plenty of snacks for car ride, hydrate with NUUN (yummy electrolyte and/or vitamin drink tabs)and wear a pair of compression socks. More on those later.

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As far as goodies/aids:
As pictured above, I like a 1. comfortable to carry water bottle and water or NUUN .
I love Nuun’s material, it’s light weight I hardly notice it. I would have never carried water for short runs pre Lyme but this helps to give me energy and also to cool me off if I over heat.

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2. Peppermint essential oil. I had developed some back pain after the drive down, whether it was from Lyme or just driving who knows… I had some oil in my roller ball so I rolled some on my pain spot to sooth pre start. I also use this at the base of my skull if I feel warm or of its hot out to cool down.
3. Shades. A lot of us with Lyme have light sensitivity. It hasn’t been bothering me lately but wearing sunglasses helps with the floater I often have in my left eye and of course it’s good to protect your eyes anyway.
4. Sea bands. These little wrist bands are placed on a certain spot on your wrist and using acupressure help alleviate nausea. I didn’t use these in Arizona but I have used them on many-a walks, hikes and even normal activities: they work!
5. KT tape. I used this for post run shin pain for walking around Tempe. I’ve had on/off shin pain for about a year or so. Most likely due to Lyme and co-infections. This helps pull everything in so to speak. I’m no scientist. Lol
6. SPIbelt. Aka spiffy runners fanny pack. I use these to carry my phone and doggy bags on walks but for the run since I had gotten a new phone I used this in place of an armband. I also put little things I may need to get me through the run such as ginger chews or in an emergency; aspirin.
7. Knee Strap: I have had patella tendinitis pre Lyme due to years of figure skating, dancing and then hurdling. Now with Lyme my joint pain tends to flare a bit. This makes me pain level virtually zero.
8. Compression Socks. These are key. I used to just use them for long runs but now I’ll even wear them around the house. They are a must for my 5k’s. The compression increases circulation and helps pain in my achy legs. Since beginning treatment I’ve had some leg pain. I think in part due to inactivity but also just Lyme itself.
9. A watch with a heart rate monitor. I used my holter event monitor for the latest race but will use my heart rate monitor on my Garmin for normal runs just to make sure I’m taking it easy.
10. Road ID. I forgot to label it because it’s hidden under my KT…oops;). This bracelet has all of your emergency contacts on the wrist and a profile with all medical info and Meds. Just a must.
Lastly, post run be sure to rest, stretch and refuel. By rest I mean definitely put your feet up for some time. I took my son’s nap time to sit on the couch and watch my HGTV.
I hope this helps someone. We do have limitations but by making adaptations some things are really possible. More than we think.