My Life as a Switchfoot Song/Problems in Paradise

When I first started treatment and was in the pits of herxing hell “Love Alone is Worth the Fight” was my mantra. If you’ve seen my hashtags of my photos with this now you know why. We have one life God graces us with and I want to to well…live it well. If I have just a moment of feeling good I want to go out explore His world, see/make art, play with my children, eat great food. Even if I don’t feel great I still want to make good use of these minutes. When you have a chronic illness you don’t know what or when your sbility to live it well is going to be diminished. So anyway how have I been feeling? Let’s break it up in segments. I’m about 2 years into treatment.. 

 Immediately post pardom:

I felt great, like for real like old me. My head was clear. I had my rainbow baby, my vbac…amazeballs for lack of a better word. I probably overdid it. I had a little BP issue at first. That was strictly post pardom issue and my OBs told me to rein it in and did. So I continued to feel like old pre-Lyme me. My Lyme doc had mentioned at my last appointment sometimes delivery resets the immune system and I was hoping that’s what happened. 

4 weeks in and when it went bad…

On about a Wednesday we found out my In-laws would be there that same weekend. They stayed Locally in a hotel which helped the last minute visit. Having someone to run around with R was great..the ramification of the visit was that when they left immediately my husband had to work on a paper that was due on Monday. So I was full on duty with the kids and house 4 weeks post pardom. Well at least the next day me and the kids could blast the AC watch movies and have a jamma day???? Wrong. My son woke up with an epic stomach bug. So I had him on the other side of the room trying to not get my little little baby sick. Up and down the stairs I went laundry, cleaning floor, mask on, scrub hands, nurse baby, eat a protein bar, play nurse rinse repeat… I think one day I earned the sky scraper badge on Fitbit. Two days later hubby came down with it. So they went downstairs and I was fully in charge of everything for two weeks. (Hubby was better in a couple days but R took two weeks and we didn’t want baby to be sick so we were overly cautious. ) it worked she never got sick. 

Move Prep

Right after that we rolled right into move prep. At the time I was still reintroducing Meds back in. I was cheating on my diet here and there . I cleaned that up and made sure to rest when I could. So I was “moderately functional but not fully present” if that makes sense. I had one of my best friends visit and that was just wonderful, gave me a little pep in my step. I had family come visit to help and visit when my husband went out of town for work. I did what I could and had help but it still was probably more than ideal for a Lymie post pardom. 

Trip back home

Seeing we were about to be moving a an ocean rock so far from family and friends we planned a trip back home to visit. We also were planning a baptism. There was some drama that was out of our control that ended up adding major stress. (Remember stress being a major flare inducing trigger for me?). Thankfully the joy of seeing my family took away from that once we made it.  My son did end up picking up a nasty virus while there unfortunately..

  
 
Part one of the move 

That was uber stressful. My husband last minute changes plans and dropped the dogs off at the pre-flight airport hotel. So I was stuck at the hotel with a sick four year old, baby and two dogs for more of less two days. Stresssss

Hotel living

Aside from the delayed flights that made our awake time over 26 hours we made to and the kids were great on the flight. Of course it wasn’t all fun we did have basement laundry time and had to deal with limited space but overall it was nice. I ate well, had some good vitamin D time, exercised when I could, listened to music. I felt pretty good. Some highlights:   

    
 
And then….

Hawaii is expensive right..well duh. Our rental car needs to come out of pocket, our car was still on a boat…We find out then that if we don’t sign a lease asap in town we are going to be offered base housing on a different base than my husband works and we decline we will lose than money we have to live on during travel. So we did non stop house hunting. Prospects weren’t good…small (like our furniture wouldn’t for small) no AC (remember Lymies often have heat intolerance). Finally we found a house in our desires area. No AC but they would allow window units, nice breeze , fruit trees. Another family put in an application much like last year in VA but we got it this time.  

 
But then…

What’s a lymie’s biggest fear moving to a humid environment???? Yup you guessed it. MOLD. Mold illness in itself is a big deal, when you have a chronic illness it creates a myriad of problems. Upon moving in I would break out into hives, my heart rate would drop dangerously low at night, the following day I would be dizzy and out of breath. Sure enough I discover a couple areas of mold/water damage. 

   
Our landlords are wonderful and took care of things right away. I wasn’t surprised. This home is gorgeous and you could see the care they took in it. The fridge was an easy fix. The bedroom however was not. Their builder flew out from the mainland and had to fix the shower that was leaking into the master. After that he had to clean the mold. The antimicrobial stinks to high heaven. Even my hubby who doesn’t have a great nose is bothered by it. To the point we are waiting on a shipment of an another air purifier before we can sleep in there, or attempt it at least. (Ps the Germ guardian air purifier is awesome. No hives since then).

Some more low lights: 

  1. Broken washer. The delicate cycle is broken, even worse is that it Russian roulettes bleaching loads of clothes (we don’t use bleach) who can afford to replace entire wardrobes? New one thankfully coming end of month. 
  2. Being a one car family for long while. I’ve used my car three times total while living on island. The lack of independence and feeling trapped is tough. Thankfully my husband got a new to him car recently.
  3. My son’s pre-k was full…and then week before opened a spot up. Great but stressful seeing opened up just days before day 1.
  4. Dogs are being eaten alive by something. They have spots gone on their fur. They are on preventatives, had extensive check ups before we left and are bathed regularly so who knows
  5. Holter monitor while nursing in the heat is rough…
  6. It’s HOT so very hot. No AC is tough with a chronic illness. My neighbor who has been here for ten years says its abnormally not this bad. 
  7. Thanks to the folks no disconnecting my car battery it corroded and died last week right before I was to pick son up at school. So back to not driving 
  8. Just being unsettled for this long. It seems like Lyme treatment where one problem is solved ten more Pop 

Highlights:   I am grateful for a lot. Every morning that I wake up, my daughter is healthy and thriving, my son is loving school and my husband is “home”. The place is gorgeous, people are so friendly and someday I’m sure we’ll laugh at the time we weren’t really feeling the aloha but no is tough. My health is really compounding that.

Symptoms now:   My left leg is covered in KT tape/tons of pain, on/off dizziness that occurs mostly at night, some headaches, anxiety, brain fog, brachardia at night, fatigue, some depersonalization, had one day of fever. I need to amp up my treatment soon.

I’ll hopefully update this more frequently. I keep my Instagram very up to date if you want to follow my progress or regression… Here are some highlights in picture form:  

    
   

    Neverland family 5k

    Since today is a cold and dreary day what a great time to sit down and finally write my race recap. Tinkerbell was my first half marathon back in 2013 so I have a special fondness for this weekend. Even though I couldn’t run the half this year I wanted to be apart of this somehow. The week leading up to the run was a rough one with a Lyme or co-infection flare leaving me with a high temp despite resting all week in preparation. Thanks to people’s prayers I started to feel better a short day before.
    Expo
    I had a few things in mind for the expo. Our first time to go on a Thursday and it was busy yet not insane. I’ve been doing more walking then running since beginning treatment so waking in my zero drop Altras wouldn’t work so I really wanted a pair of the new Tinkerbell new balance shoes. They’re gorgeous but a little small. They fit fine with my crazy compression socks though.

    2015/05/img_8871.jpg . My cousin and aunt picked up some sparkle athletic arm sleeves on my recommendation because I love mine for the cool upcoming forecast. Next up was some KT tape for myself and a friend. I got the lime green sparkle. My group of my mom, aunt, cousin, son and hubby was a bit much for the expo so we left to meet up with a friend for dinner in Downtown Disney.
    Race morning
    It was chilly, low 50’s and steady rain. My poor family from MA was not expecting this from California. The alarm went off bright and early at about 3am. I had only managed about 1 1/2 of sleep since it was really stuffy in the room due to the heat pumping and I was restless. Thankfully our ART shuttle came and we headed to Disney.
    The start
    The 5k starts near Main Street in front of Sleeping Beauty’s castle. We had assumed there was a staging area once in the park but when we got there and asked what to do with our bags she said we had to carry them, no bag check. After some pleading she said she’d ask someone else. That someone else also had no idea but thankfully a runner overheard and said it was just outside the park. It has HARD to find, tucked behind some trees on some picnic table. This is my only complaint for the run, that should have been better organized. The thought of holding a big bag through the rain was daunting…
    Anyway back to the positive. After the National Anthem which we all sang along with someone playing it on a trumpet I believe (it felt like a dream, dark, no sleep, in fairy wings) the fireworks went off and Tink flew by! This was the best start I can remember. Very Disney magical.

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    There was also a little skit with Wendy and the constable telling us about Peter’s missing shadow. Whenever we saw this we would crow.

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    The run
    The plan was I was to run with my speedy-runs track every day-cousin and my mom and aunt (who was running the 10k the next day) would go together and mostly walk. This was a fun run and by the time we had to re-enter the park for the bag debacle we were towards the back so it was slow going for awhile. We did get into our grove and found a small spot on the left to sneak through and run. It narrowed at points and we had to walk but that was fine by me because my body needed the rest. I luckily had the smarts to get us all ponchos and that really kept me warm. It stopped raining about half way though so I took the poncho off…it would downpour again toward the end…lol oh well. As for characters photo ops: there were a lot for such a short race: Hook and Smee, Wendy and Peter, the Lost Boys, and a tons of pirates.

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    2015/05/img_8831.jpg Lots of park time on course: starting in Disneyland, through some behind the scenes areas where we would see Peter’s shadow, through California Adventure. We would see Bugs Land, and the finish was just up the hill near Paradise Pier. That also allowed for some cool photo ops by Mickey’s Ferris wheel and California Screamin’

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    We met up with my mom and aunt shortly afterward. They ran more expected. Go Mom on her first 5k.
    Overall grade A. Tons of park time, photo ops, fun course, cheery cast members giving the Mickey hand high 5. The only real draw back was the bag thing. Which luckily we got there early enough to start. I would definitely recommend this for some family fun.
    For my chronic health warrior friends
    It really amaze me every time how after a race I feel significantly better for at least a week. I I feel exercise, when we can do it is such a help in the healing process. I know sometimes I doubt myself. Take it slow and easy, do what you can, and have faith. All it takes is faith, trust and pixie dust right?

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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…💚