An overdue HappeningsĀ 

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.  

  

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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 timešŸ’š