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 πŸ‘ŽπŸ‘ŽπŸ‘Ž
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 FπŸ’¨πŸ‘‚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 πŸ˜•

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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…πŸ’š

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 timeπŸ’š

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.

Happenings 1/21

A couple weeks ago (for the second week in a row due to having colds/bugs plus an increase in Lyme symptoms) I stayed home from church. I pulled out my Bible to do some journaling and got a call from my mom that my aunt unexpectedly passed away. I’ve always been close with my aunts so this was very sad. I just wanted to share a few memories: When I was about 8 we went to visit her and my uncle in Florida where they were living at the time. One day we I believe we’re going to go horseback riding on this huge farm but when we arrived riding was over for the day so we walked around. From every direction, I swear even the tree tops there were these huge peacocks jumping all over the place. I swear they were trying to get me. I think I’ll always associate peacocks with my aunt. She was beautiful and unique like them… Speaking of unique I can remember one Christmas opening her gift and it was a Chinese food purse! Huh? We chuckled but then realized how funky and cool it was, I will always remember her for her unique style unapologetically herself, something we should all strive to be. My aunt had her own chronic health issue. I’ll leave it at that for privacy/respect for my family but I will say since my diagnosis we had a kinship, knowing a little what the other was going through. I generally am the last person awake in my household and I could always count on going on Facebook and reading her inspirational posts, comments on my photos, blog or wall. She helped me feel less lonely. Rest in peace.
The world also lost another special individual recently: Peggy SueIf you’ve run Disney before you’ve probably seen her. She was a fixture on the courses in her motorized scooter with a motivational sign. I ran Disneyland half marathon in 2013 four short weeks after losing my twins and being in the hospital with sepsis . I got the OK to run but I knew it would be rough seeing I hadn’t run in a long time. What made things worse was the heat. It was in the 80’s and humid so humid. I had heard about Peggy Sue on the RunDisney pages and when I saw her with her “hello complete stranger, im proud of you too” sign I was thrilled. It was toward the end of the race and I didn’t know if I would make it, she gave me that push. What I didn’t know that year was that she was just diagnosed with cancer, what I didn’t know is that she has a condition that weakened her muscles. She came out anyway and cheered for people she didn’t know, race after race despite her difficulties. How inspiring is that?
health
The first couple weeks of January have been rough. My Lyme symptoms had been strengthening again: fatigue, headaches, brain fog etc. I think this was happening for a few reasons: we hadn’t gone out of town in some time (we usually have an overnight about once a month but hadn’t recently and something about the desert and this house makes me worse), I was out of my NUUN all day which had been helping with energy, I was out of local honey (helps with allergies and inflammation) and I think also it’s time to do more Lyme bug killing. Also I’ve had a couple colds/bugs. People just don’t cover coughs for the most part around here…when we were in Arizona that wasn’t the case….I am feeling overall better after our run in Arizona (race recap will be up this week).
docs
I had a consult with the seizure neuro not long ago. He wasn’t 100 percent convinced that what I’m experiencing are seizures but he did take me seriously in regards to Lyme. He grew up and spent a lot of his life in Maine so because of my history with Lyme is ordering an EEG and MRI and even said we could do it without contrast. I’m nearing the end of my 30 day event monitor for my tachycardia at night. The office forgot to order it so we’re about two weeks behind schedule on that. Up next Lyme doc on Feb 5, cardio follow up Feb 13, and will be scheduling a neuro soon as well.
what else>
I’ve mentioned in my resolutions that I was going to look into learning more about oils. I’ve teamed up with EchoChic to do just that. I’ll have a weekly feature coming up soon. We had a good time in Arizona. Too bad we couldn’t stay because our team is super bowl bound. I’d love some tickets.
Whatever battle you’re fighting keep fighting and tell someone you love them(even if they’re furry). Continue reading

Tea time

There’s been a lot going on health wise and more..more on all that in a happenings post. But always good for rest and relaxation is a good cup of tea.
(Not to mention health benefits. ) Newport Skinny tea is at it again with some sales and promotions. Most recently a “sparkle sale”.
What I’m really excited about is their new cocoa tea. Some info from them:
“The delicious flavors of Newport Skinny Tea
in a brewable tea made from roasted cocoa beans
you can brew this tea in a coffee maker or a tea infuser
Give gentle long-lasting energy with no crashes
Suppresses appetite
Highest known antioxidant ORAC rating of any food
Traps dietary fat and suppresseRoasted Cocoa beans
Peppermint Leaf:
Kokum Fruit:
Anise Star Fruit:
Cinnamon Bark:
Stevia Leaf:
It tastes like minty hot chocolate with no calories and no sugar
it has the consistency and richness of coffee,
its really unlike any beverage we’ve tried before
It contains theobromine like tea, not caffeine like coffee,
and it does not contain the same type of acids as coffee either,
people who can’t drink coffee generally can drink cocoa bean tea
without any issues, but if you are unsure start with a small amount
and monitor your reactions.s production of fat cells
Soothes digestive tract and suppresses cravings
Satisfies sugar cravings with stevia
If you love Hot Chocolate you will love this tea!!!”

So anyway I’m pretty excited about this. I should have my sample soon and them be sure to look for my review and giveaway in the up coming weeks!

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How Great is our God in Sin City, AKA RNR Vegas 2014

The irony that this was the first song on shuffle of my phone was not lost on me, but more on that in a minute. I’ve been meaning to write this up for ages, but hey at least it’s still 2014….
Memory Lane
We ran this race last year: I did the half marathon, my husband the full. I had my mom, step-father and grandmother come watch and help with our wee one. I had finally gotten to a point where I felt comfortable running 8/8:30 for my 5k, 8:45/50 ish for my 10k but the half marathon distance I struggled, I’d generally lose my gas around mile 11. In retrospect the endurance piece was probably those lyme buggers bringing me down. I had just felt a pre-cold coming on the day of the expo, no surprise but decided to stop by the b12 shot booth and that made me feel amazing! To sum up, I took pics with my running elivis’, ran a 2:18, smiling ear to ear, saw my family near the finish to high five, and then partied until dawn (ok so like 2 BUT late for us). I came away with it just being pure fun. Shiny silly fun. So when my lyme diagnosis came I was bummed that I couldn’t do this again….but then they added a 5k so I signed up, with the insurance of course.
The theme of weekend appeared to be ahh we’re late. In part, I think because of them adding the 5k this year which made it possible for bling junkies to do a race on Saturday and Sunday and get an extra medal. So lines abound for everything. I had just gotten over a cold that turned into a sinus infection and honestly I wasn’t even sure I was participating period. We made it to the expo about 10 minutes after packet pick up was supposed to end, but it was still going. Stopped at the NUUN booth and grabbed some of their usual expo special (2 tubes of NUUN with a water bottle for 20) and hopped back in a taxi line to head to SLS on the other side of the strip for my start. We has just made it there at 6 on the dot. I had take my temp, all the stress of running to make it on time through me into a little flare and I right at 100. Couldn’t get it lower….so I put my sweats on and threw a frown on. My aunt (who was running the 1/2 of the half) and husband (who was running the full) convinced to to at least start.
So I did, at the very back of the pack. With water bottle in hand I joined my fellow runners, said a quick prayer to make it through and to ask if I was making the write descion. The start was under a glowing archway. And we were off. The camaraderie was evident from the word go as people encouraged each other and just had fun, And after we run under the tunnel of lights I turned my music on in one ear and then the Chris Tomlinson song came on: I had made the right choice. I took it slow, ran when I felt able.
The course
It wasn’t entirely a closed course but a portion of the road roped off. I didn’t mind, it was nice getting high fived by people out of the town, or cheered on my folks who had been clearly enjoying all that Vegas had to offer. We passed the Riveria, and Circus Circus and finished at SLS parking lot through an archway of twinkly Christmas lights. For the last .10, I let myself just run, like I used to, freely. There was a concert after but we didn’t stay long, we had dropped off my son with my step dad and ran off and plus it was time to leave. My favorite part of the night was walking on the archway to get the monorail and hundreds of running a ran to the sides that overlooked the road, the last runners were on the course. One lady in a tutu, arms raised in victory and the women in front of her beasting it with a prosthetic leg. You would think it was Tweens cheering for One direction the way people were cheering. That’s it, Lyme disease would not take me from this community.
The next day I was in full on spectator mode. The run/walk had made me feel fantastic and gave me a lot of energy. My stepfather, son and I joined my aunt at her start. Again late so we didn’t have time for the concert. (Macklemore) it wasn’t Snoop like originally planned so I didn’t mind too much. But what I didn’t like was that the moved the stage to right where the runners spilled into the start area last year off of street (across from Mandalay bay-ish area). So we has to walk an extra block or two to get to her start. Very ineffectiant. I literally ran with her to the corrals we pulled over, I grabbed her gear and she just, I mean just made it. We got to see her run by about a mile in. Our plan was to take public transportation to see her finish…but after walking ALLL over the strip we realized it wasn’t feasible without a cab. I guess “old Vegas” just as accessible and we had a two year old in tow so cabs were out. It’s a bummer for those runners because crowd support is great for this weekend and they don’t get their lion’s share. They did however have a shuttle provided for them to get to near the half/full finish so we met our runner there.
After celebrating her success and quickly changing at the hotel. It was unseasonably cold and a bit windy. We headed over to the marathon finish and cheered runners, high fived and waiting for my husband to cross. It was cold…I know I said that but man. Unfortunately he had a slower run than normal so we were Popsicles when he crossed but I’m still proud!
Runner perks This year they gave you little bracelets to wear to access your discounts. We took advantage of the High Roller at the Link. It’s this huge Ferris Wheel you can sightsee the strip about 300 feet or so in the air. They have a bar so you can bring one on your little orb. It was really neat to see the Bellagio fountains going off from the sky. I would highly recommend it.
So over grade A-. There’s room for improvement, especially in organization area. I think when you increase the field of runners things get naturally a skewed. Also move the stage back to where it was… But overall Vegas is just fun. A big playground for adults and that’s the vibe I get from this race weekend. So go and have a blast, maybe even PR while you’re doing it. It’s a nice place to do it.
What I really got here was that I can still run, as long as I take it easy. And I really reap the benefits for at least a week following in energy, muscle ton, a little mental clarity. See you on the road….

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It’s the Little Things

So I placed my first order on vitacost YESTERDAY and my order came today. As I mentioned before since my lyme treatment has begun I’m making a conscious effort to stay away from chemicals.
I had a hair stylist I LOVED in North Carolina. (Hannah at Seagrass Salon). I never found one here. I do desperately need a cut, which I’ll do eventually but I need a color asap. I tried a Pinterest DIY color that was coffee based. Dispite smelling a bit like a Starbucks Barista I liked it, it added a nice warmth but it did not cover the grey:( I guess 4 pregnancies in a little over 3 years will do that.
So I looked on vitacost while searching for a probiotic. I came across Light Mountain Natural. It’s all plant based. No chemicals, no animal ingredients or testing. I ordered the mahogany and medium brown. I’ll have a product review in the next few days! Wish me luck!!

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