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 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.

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.