Whole lotta happenings

A little over a week ago I had my first Virginia LLMD appointment. Oddly enough we drove a hour and some change to a small, gorgeous rural little town. Situated in essentially a large brick home is Dr. S office. We were created by two therapy dogs (how awesome is that) a small jack Russell and a lab like Chester 

     
As usual leaving a big Lyme appointment my heads spinning a bit but I’ll try to wrap it up nicely as possible. The doctor is a gyno as well so I thought that would be a good fit and I was right; she was. We talked about adding PC liquid (part of the PK protocol) and calbuhtrate. One is for repairing cell membrane, help building baby’s brain, and help the abx not stick to baby’s genes and the other helps detox.:or a combo of them. She also wanted me on Ox bile but seeing I’m a vegetarian we nixed that. We talked about adding some herbs if Bartoella symptoms worsen and maybe Mepron of babesia picks up since my previous herbs aren’t pregnancy safe. I can add back plaquinol if need be since my MFM cleared it. Plans for birth are doing cord blood testing through igenix and she encourage trying for a vbac. I’ll be going to labcorp to retest my thyroid and check vitamin D levels. Hopefully the déjà vu Lyme stuff that’s been popping up will clear (one apnea incident, low heart rate, and one tongue biting incident). My next appointment is in Decemeber but I’m thinking of pushing it back to Janurary so I don’t overwhelm myself during the holidays.

We went to the Marine Corps Marathon over the weekend. I had originally signed up for 10k and even fundraised for fisher house . After the cramping incident post wedding and something similar on a smaller scale after two hour of shopping at Wegmans I decided it was in our best interest for me to forgo the run. Even walking for 6.2 would be two much. I’ll stick to jogging 5k’s when I can. It was still great weekend though:  good time with family, my cousin’s first 10k, my aunt PR’d and my husband completed his 10th marathon. I only have a slight cowbell injury.  

   
Yesterday while cleaning up, putting the clean dog bed back together (The pooches got groomed while we were away), the phone finally ran. As I sprinted to it and strained to here while my son was having a meltdown in his room I hear it’s my MFM office. Results are:  everything came back low risk and we are having a girl!!! So relived for now but I’m sure I’ll have anxiety for my anatomy scan that is coming up in a couple weeks. Thank you everyone for your prayers and please please keep them up. I know they’ve helped. I had my routine Ob appointment today, baby girl’s heart rate was prefect and nothing new to report. I’ll see them I a month. This decale was on the wall today:   

 
Next up:  MFM in two weeks, finding a dentist and lots of little boy school activities. I’m hoping to have a boring rest of the pregnancy. Until next time…

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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.  

  

Hikes and Happenings

The ticking down of the weeks of leaving the desert is very exciting but stressful trying to squeeze in appointments that are no less than two hours away-some four. As of yesterday I booked most of them: heart follow up TBD (waiting on monitor to arrive first so we know how long it will take to get results), MRI 3/22, EEG 4/6 (although waiting on March cancellation), Neuro follow up 4/17 and rescheduled my last Lyme doc appointment for the same day as my tattoo: 4/27. Whew…..
While waiting for our physical orders to peace out of here we enjoyed some hikes. It’s something we did last winter as well. The freedom of time (not signing up for half marathons) has afforded this. During the week I’ve taken my pack to some local trails. We’ve had a crazy amount of rain (for here) and that’s made this place blessed with so much green and wild flowers.

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Over the weekend we went to Short Canyon. About a 20 minute drive north. I tend to find things listed as “short easy hikes” and they end up totally not so. We ended up deep into the canyons. My vertigo was a little nutty for a bit but some yogic breathing solved this. We went much further than expected and although the waterfall wasn’t exactly as advertised (hubby found it on the way down) we found much more.

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What else? We held off on signing up for the Coaster run as of now: first because we were deciding between that and doing race at Catalina Island and then because we found out our lab, Chester has a tumor on his tail. We should find out by the end of the week what it is. Prayers please, he’s an amazing part of our family. We’re still in the planning process for our Disneyland trip/son’s bday/family visit. I also completed the #forloveandyoga Instagram challenge. It was the first I’ve been able to do! Single digit weeks here for me, lots to do…. 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💚

Rock and Roll Arizona Race Recap

We arrived in Arizona Friday evening and went to the expo in Phoenix. This race was set up a bit different. The 5k was on Saturday in Tempe along with a second expo day. On Sunday was the marathon, half marathon, 10k and relay. So something for everyone and those bling junkies could do a race a day for a “remix challenge”. The marathon started in Phoenix, went though Scottsdale and finished in Tempe.
We parked in the lot in downtown Phoenix and walked to the expo . I have to admit I was a bit giddy seeing all the super bowl signs hanging around with my Patriots in the AFC championship that weekend. The expo was well set up and stocked. My iPhone had finally crashed one too many times so A new phone meant I needed a new Spibelt. I prefere running with a tune band for my small arm but I didn’t have time to order one and I like my little pouch for walks and hikes. Finally found that at a little pop up shop called runners den. Next up was looking for NUUN. I needed a new bottle to run with and they always have great expo deals. I wasn’t sure if I packed my knee brace so I wanted to pick up some KT tape just in case. Hubby also picked up some socks and body glide. There was also some cool races to sign up for but we still don’t know where will be living next year….

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My 5k started in Tempe beach park. This is a gorgeous area with paths, playgrounds and more overlooking the beautiful Tempe Town Lake. Now sometimes the smaller race just an after thought but that was not the case here at all. We had our own bag check which was nice because it was a chilly morning. I kept my clothes on until the last possible moment and headed to the back of the corrals. After the national anthem we were off. With all my gear on (see previous post) I felt pretty good. The course was fairly flat save a few overpasses one that was more substantial than others that I actually chose to gun up. We had a lot to look at running by the lake and some cool mountain/rock views. There was a band on course at the other end of a tunnel so it really amplified the sound and pumped you up as we ran though it. We also had a dj towards the end of the run. ( see the little 5k was not forgotten about;). I finished faster than my previous runs since undergoing my Lyme treatment. I felt pretty strong too…maybe I can run a little more?

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Finish Festival. After collecting my medal (not bad guitar pick) and grub I met up with my family and went to the finish festival. It was pretty warm now and we sat in the sun and watched Desert Dixie, the post race band, play some country music. I had my free mich ultra. I never drink anymore with my Lyme but I earned it. They also had a kid run for grades k-12. My son is too young but because of this they had awesome inflatables to play on that he LOVED (5 dollars I’m sure for insurance and a signature). We had great fun in the sun.

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Back at the hotel. My husband had scored a great deal as a military rate at the Marriott in downtown Tempe. It was a quick (less than ten minute walk for Tempe beach park) which was the hub really for race weekend. *a bit of advice ask to stay at no road side of building, it was a bit loud if you’re a light sleeper like me*. I rested for awhile and then we walked to PF Changs (race sponsor). Yummy food for my crazy diet. More rest after and then I took my son out exploring. (If you cut through garage even quicker walk to the shops). We found a cute candy shop and mini park with bunnies while my hubby kept his feet up in prep for the marathon.

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Marathon day. My husband’s run started at 7:50, not too early. He said public transportation was super easy to get to the start.The course, he mentioned as fairly flat and had it not been for the unseasonable warmth (near 80 at finish) he probably would of PR’d. He’s fast too (3 1/2 average) so I can’t imagine being out there longer… Again it was easy for us to walk to the finish. We found our spot. (Marathon and 10k on one side 1/2 and relay peeps on the other). We cheered on the first female and waited for “daddy”.

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Finish festival. It was pretty easy meeting up with my eight time marathoner at the baggage area. We chilled by the lake while he caught his breath and then picked up his finisher jacket (free brooks swag). Then it was time to hit the beer garden (children allowed in unlike some other races). The tent provided some good shade as I ate a fruit bowl and they shared a pizza. Entertainment was great with Wallflowers started and then OKgo.

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Overall. It was a really fun weekend. A lot to do in the area. We cheered on the Pats at a Buffalo Wild Wings that night. I had really wanted to do a hike the next day but someone was sore so we hit a dunkies instead. The race was very organized, a lot going on, easy to spectate and something for everyone. A+ (just one plus nothing will beat the Bears).

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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.