The post you've been waiting for..... Payback time

Yep. As suspected my amazing marathon of a day demanded payment in the form of two days in bed. The pain was outrageous, that fatigue crippling, the guilt was ever present, the "I'm sorry"s were flowing and my friends were sympathetic and understanding. I managed to make it to dinner out last night because it was some of our friends last night, and it was ok. So not quite two days. That recovery time alone  is definitely improved on some levels from my experience in the bay area, but  I tend to think it is more the adrenaline from being on vacation and seeing my friends that really shortened the timeframe. Today has been a bit of a struggle, but I did hang out at another friends pool for a few hours and catch up with her. My exhaustion level and physical shut down dictated our hasty departure but it was a good time to leave and the kids and a marathon day of  swimming, hiking and more swimming. Now we're home and Wrapping up the day and I still believe it was worth the payment.

Accomplishing the improbable

I would say my stamina has been tested in many ways since we moved to Hawaii, but yesterday was one heck of a pop quiz. 

We are in Maui having a mini reunion with friends from California. There are several families joining us and it has been an amazing trip so far. One thing Maui has that we love is the aquarium. Our son is especially into sharks and sea life right now, so we had to go. I actually made reservations a week or so ago to do the behind the scenes tour of the aquarium which in and of itself is incredible to me, since I never would make non refundable reservations in California because I just never knew if my body would allow it. But, I digress. It was also decided among the families that we would go to the kids’ favorite restaurant in all the world- Slappycakes for breakfast. So, the day began with a two hour breakfast of making our own pancakes and chatting with friends, followed by a 45 minute drive to the aquarium, an hour long walking tour and then meandering around the ocean center. When we left there it was time for the football game and some lunch with friends at one of the resorts on the beach. Lunch and drinks at the sports bar, four hours of 3 different pools, four different families, a visit from our daughters old teacher all followed up by dinner, a movie and a sleepover with R's bestie at our condo completed the day. 

At one point my friend even asked how I was feeling and remarked on the day I had. And I felt the need to point out to my husband several times that my body was still functioning at a decent level after a full day already. It allowed me to enjoy my friends as I wanted to, not how my body dictated and it allowed my amazing and selfless husband to sit and watch the football game with friends and drinks since I was perfectly capable of walking around and swimming with our kids by myself. It was a day out of a movie. At one point I was strolling through the resort looking for the "pirate pool" to find my child and some friends, holding a juice in my hand and revelling at the normalcy of my actions in this storybook situation. Can there be a better vacation, day, life than wandering in the sun through a beautiful beach resort drinking tropical juice in your bathing suit looking for a group of friends after leaving another group at a beach side bar/restaurant? After a day at the aquarium and a fabulous unique breakfast? In my world the answer is No and until a few months ago the answer would have been “if only my body would let me”. Thank you Maui for giving me that day and universe for giving me this life.

Friends, island hopping and feeding the soul

Today, our blessed life has brought us to Maui. Our daughter’s friends from California have descended upon the Island so we had to hop over for a mini reunion. Four of her close California friends, another family from the school AND her old teacher are here within 5 miles of each other. So, a 45 minute flight and an ocean view condo just had to be done. There has never been a question in our minds that we lead a blessed and unique life, and yet another experience has proven it as I sit here with my cup of coffee looking out at the ocean and blue skies of west Maui. 

Sitting by the pool for hours on end catching up and laughing with good friends we have known for a child’s lifetime and watching our son and daughter wrinkle from endless amounts of time in the pool playing with friends feeds the soul like nothing else. 

I cannot express how much I love Hawaii and how happy I am to be living here. My soul feels at home here in a way I cannot even describe, but it doesn’t come without sacrifice and sadness as well. I miss our California community, the school, the neighborhood, so having such a huge group of true friends surrounding us has definitely lifted spirits I didn’t realize were slipping. It has made our daughter realize she will not lose these friends that she held so dear, and it has made me realize that simple conversations and laughter with good friends is an integral part of who I am. Oddly it has also reaffirmed my decision to move here. Before we came to Maui, I was wondering if this experience would make me question the move by reminding me of what we left behind, but it has done the opposite. I have realized I will not lose that community of amazing people and that it wasn’t built in a matter of months but years, so I can build another one in time. It has also allowed me to enjoy these people in a way I couldn’t in cold foggy Northern California since the weather and outdoor lifestyle prolongs my days and stamina. But that is another post...

Experiments, sleep and oops....

It has been a while. I wish I could say this was because I have been feeling so great that I haven’t had time to write. Sadly, not the case. However, I am on the upswing now!

I had a(nother) moment of not so bright. I will never learn apparently not to push my boundaries. 

I visited my new Dr with a great sigh of relief learning she is awesome and I look forward to working with her. She, however, got the un-brightness ball rolling with an explanation of anemia of chronic illness. I am anemic- surprise surprise- and have been since I was pregnant with baby #2. Many many women become anemic during pregnancy, I am not unique in this, but my numbers just never recovered. I began taking iron supplements and everything was fine. Fast forward 6 years to a drs office in Hawaii where my Dr tells me that this anemia may be due to chronic illness and inflammation not iron deficiency…… Well, I’m sure you can guess what came next. Yup, I decided to test that. So, after 6 years of balanced blood levels and no anemia symptoms I stopped my iron supplements and plummeted into sleeping 18-19 hours a day and being cold in 85 degree weather. Oops. 

So, that is why I have been absent for awhile. Sadly my parents visited during that time, so I didn’t get to really spend the time with them that I wanted. It was fantastic to see them and have them experience our sweet little town though! 

Anyway, back on iron and feeling back to my normal. I solemnly swear to never test that theory again. 

Cars don't vacation in Hawaii

The most surreal part of this move so far was driving my own car. In Hawaii. I've driven my own car is probably 20 states, but this one is obviously different. As I drove from the Port of Honolulu toward downtown and looked at the tall buildings, landmarks and the water it hit me that this is permanent and we really really did it! 5 seconds of panic was followed by "wow!"
 I still pinch myself thinking it's a dream. But now that my Scooby is here it's getting harder and harder to think it's a dream or a vacation, because cars don't go on vacation with you to an island! A friend told me when my car was here it would hit me and it certainly did. Not all the way still but I think that will just take time.

And there she is! My baby in Hawaii! In front of our little beach house. Life is good.

As a footnote I have noticed that now that I'm driving a beat up obviously non rental the locals are much friendlier and open. Don't get me wrong, everyone is nice here, but they treat me like a local now, carrying on longer conversations etc because no one in their right mind would rent a dented old Subaru so I'm obviously not a tourist and am here to stay! 

Cockiness, hiking and pineapples

So I may have gotten a little cocky and done way more than I ever should do multiple days in a row. This isn't the first time I've done that and I guess it's good to learn my new limits in this environment but ouch! My cardiovascular system is clearly not doing it's thing because my legs hurt so bad even just lying here I need pain meds. I'm going to go out in a bit and walk to the beach to see if it helps, but right now my pineapple sheets and I are chilling out with the a/c. 

This flare up isn't causing the panic that the first one did because I've seen amazing things my body is capable of doing now. The number of days I was able to function at a high level was astounding and definitely gives us hope. Now, me being me, I'm going to test the limits of those amazing high functioning days. 

One thing I've missed is hiking. I used to love just walking and hiking through the outdoors. Anywhere I could just immerse myself in nature was always appealing to me. I prefer to hike alone actually to absorb the peace you get being away from civilization (even if it's only a couple of miles). Since all of this hit 9 ½ years ago that is one thing that just got completely eradicated from my life. Well, I now live in not only one of the most beautiful places in the world to hike, but in a climate that might allow me to do it! 

Sadly, my other loves of tennis and running are still off limits for fairly obvious reasons (brittle super inflamed spines don't like jarring or start/stop movements) but maybe they can be replaced with surfing and sailing? Or wind surfing! My upper body strength is much better than most people realize and that is definitely a requirement there! There will be other substitutes I know, just have to try some new things. Hula anyone?

As soon as we can get a routine established and it's not just a whirlwind of squeezing in fun activities among the mundane tasks of moving to a new state and shopping required for the move, I'm definitely trying to take a hike. Who's with me? 

Until then my pineapples and I will be here under the A/C. Until we get our first electric bill that is…. Yikes. 

School, cars and chipmunks

Days here are amazing. My ability to do everyday things has definitely increased. It's crazy. I'm still wary since we've been disappointed so many times. It could still be adrenaline from the excitement of the move or the vacation effect or the fact that M is home with us during the day…. It could be a million things. I'm not being pessimistic just realistic. I'm trying to not get my hopes up and I'm just enjoying these days as much as I possibly can. 

Yesterday was an eye opening "wow" kind of day. Our day went like this:

1. Go to the kids school to tour it and register them (about 30 mins of STANDING and walking)
2. Back to the house to load up the car with beach supplies then a 30 min drive to the Port in Honolulu to pick up our cars. M drove the rental car back to the airport while I followed with both kids in my car (!).
3. We turned in the rental car and then drove back to the Port of Honolulu to get his car. 
4. We then drove 30 mins to the Disney resort where I swam in the ocean fed lagoon, played with my kids on a paddle board and sat talking with friends. We then walked around the entire resort (we saw Goofy and Chip  n Dale!) meeting people, chatting with everyone and trading pins with our friends son. 
5. Our friends left and we walked back around the resort looking for dinner ultimately deciding to just stop somewhere on the drive home. 
6. Then I drove 30 mins back home. We got back at 9pm. We had begun our day at 10am. 

So for 11 hrs I participated in real life just like everyone else. I did need just a couple pain meds and coffee but that will never change and is just fine with me if it allows me such an amazing day. 

As we lay on the paddle board out in the salty lagoon my daughter and I chatted. I said to her:

"See, this is why we moved here. Look where I am right now. Where would I be in California?"

"In bed. In hibernation."

"Yep. So do you see a benefit now?"

"I guess so. I like it when you play with us"

"Me too baby"

And then I rocked the paddle board to knock her off into the water lol. This began a game between her, my son, our friends son and me of trying to knock each other off the paddle board. 

Later M, who was a little ways away from us during our game, told me he and our friend were saying they didn't know who was having more fun- me or the kids. 

I can guarantee it was me. 

Hidden Idiosyncrasies of chronic illness

I take for granted sometimes that people understand how difficult small tasks are for someone who is chronically ill/ in pain. I actually forget that getting off the couch to go refill your water bottle is not a monumentous event for "healthy" people. It doesn't cause them pain. They don't have to fight with their body to do it. It's easy, you tell your body to go and it goes. I'm sad to say that after 9 years I no longer remember that feeling. Every task put in front of me and everything I see, whether as simple as walking across a room, bending to pick something up or as painful as going to the beach or park or pool, it is immediately measured in my head as to the effort it will take, if I have enough strength to even do it and if it is worth that effort/ consequence. "Regular" people talk about things taking "effort" all the time so I almost don't like using that word because it doesn't accurately portray how difficult it is to do even the smallest of tasks.

One thing that isn't obviously difficult for anyone, but is for people in my situation is showering. I've explained why to a few

people and I constantly get "oh yeah, that makes sense". Showering back in the cold damp of northern California required many many spoons. I generally didn't have spoons to say shower AND go somewhere in the same day. I got used to taking showers at

night when I could. And always with the bathroom heater on high and only washing my hair periodically.
Showers are tough for many reasons:
1. Your body temperature fluctuates constantly in a shower since the water temperature is different than the air temp and the water hits different parts of your body constantly.
2. The effort of raising arms above the head is extremely difficult for many of us, so washing and conditioning hair is difficult.
3. Attempting to shave your legs is a nightmare. It's painful to bend over it's difficult to stand on one foot (turns purple and pins and needles).
4. Then there's getting out of the shower- sudden temperature change, more movement to dry and for some it's irritating to have textures rubbed against your skin (this happens to me sometimes) and then any sort of hair drying or product requires even more effort.
5. And you're still naked at that point! So you have to add getting dressed which is difficult

every time you do it and takes away spoons.

So, when I say showering is too much for me most days that's what I mean.

(There's a reason there's so many memes about this)

The GOOD news is that the first major difference I've noticed moving here is that showering doesn't require nearly as many spoons! The air and water temperature are almost exactly the same, there's no sudden change in temperature getting out and honestly you barely have to towel off because the heat will help that along! And for me personally I don't bother blow drying my hair here because it is curly so this humidity will just curl it right after I straighten it. So it can air dry with some hair gel. Getting dressed every day is shorts and tank top! No dreaded socks with the bending and twisting. Slip on flip flops and done.

This isn't something I anticipated being so much easier so it's a nice surprise! Score one for Hawaii!!!

Sadness, sand and goats

"So far I don't see any benefit to moving here, you're still sick" - my 9 yr old daughter

Insert knife in heart and twist.

So, we are settling into our new town still looking for a rental to live in! So far we've seen 4 and none of us really loved any of them. So on we go.

We did get to go to a farm yesterday though and pick vegetables and play with chickens, goats and bunnies! I had a great health day yesterday. Went to the farm, looked at two houses. It was my first truly "good" day since we arrived on the island. All I can say is thank goodness I have 9 years worth of evidence that I in fact DO feel better here because otherwise I would be convinced we moved here for nothing. Like my poor daughter is.

For this upset little girl keep in mind there was a huge parade right on our street on the 4th of July, and that night we WALKED to the BEACH to watch fireworks with like the whole town, in 75 degree weather at night. Yesterday we went to a farm and then they went to the pool. They've gone to the beach 3 times. Some would see those things as benefits. But for all I can justify in my head that she's "just sad because of the move, she's feeling anxious because we have no permanent place to live, she hasn't made friends", etc it still worries me beyond belief that maybe she's right.

Why would anyone move to paradise?

So how did we end up here?
Living in unpredictable cold weather was making so many things so much worse. W
have other reasons as well , but the thing that started it all was being told "it's probably not ALS, I'm pretty sure it's MS".
'Probably'? 'Pretty sure'? These phrases made us take a step back and take a serious look at our life.
We decided if it was ALS we were travelling the world as long as I could. If it was MS we were moving to have a simpler life where my husband could be home more and we could all enjoy each other.
The testing for MS went on seemingly forever, and when it ultimately came back negative we started to realize that this was just our life now diagnosis or not. The symptoms didn't magically disappear when  why they said it wasn't MS. And we decided it was time to make a change anyway to live a simpler life where we could enjoy each other and our kids more. Possibly help my health and enjoy whatever time we have left on this planet.

I've always wanted to live in Hawaii.  Since I was 13 years old and my parents took us to Maui for the first time it has been a goal. I remember saying even at 13 "I'm going to live in Hawaii someday and be a scuba instructor ".
Being scared you don't have much time left really re-prioritizes your life. Finding out it wasn't a death sentence but a chronic problem that could get worse didn't change things back.
But living your dream does take on a whole new weight. What if it sucks? I've been dreaming of this for 30 years! What if I ruin my kids lives moving for MY health?

We landed on moving to Oahu through a circuitous route involving Costa Rica, The Carolinas, Texas, the big island of Hawaii and then finally Honolulu. It just has more to offer young kids growing up and most importantly the best access to some of the best healthcare in the country. Yeah, Hawaii, who knew right? From there it was a five day trip with 6 hr days in the car visiting seemingly every town on the island to find where we belonged. When we hit the town of Kailua we just knew. We still gave other places a chance but nothing really felt like home like this small beach town.

So here's hoping! Taking off from your very comfortable life with no job, no place to live and all of your stuff on a boat in the Pacific really makes life itself stand out. We've got nothing but the clothes in our suitcases and a desire to live a fulfilling and healthier life.