Gambling with reality

Sitting in the donut shop we have always loved in our California town we buy our lotto tickets and perform our ritual of "what would you do….". There is no lottery in Hawaii so it's been a while since this beloved ritual of donuts and gambling.

I instantly say what I have always said and wanted. Being a traveler at heart and in my soul I say "I would go to the airport and get in the first plane I could to another country to explore." For some reason reality seeps into this particular morning's ritual and M says:

"It would have to be somewhere warm though." 

I stared at him in shock and silence as he and the kids threw around ideas of building mommy a special suit that keeps her warm and energized and helps her walk…. 

I couldn't believe, and still can't, how this one comment affected me. It was like being punched by reality in the solar plexus. No matter how much money we have or where we live or what is discovered I am stuck in this broken body. There is no "eventually", "down the road" or "someday" in this health journey. 

Sometimes comments slide on by and sometimes they become part of you. And damn don't you wish you could pick and choose which ones do which thing

Assessment, validation and for goodness sake write it down

We are on the airplane as I write this travelling back to California for the holidays. This has become a big test in my mind. Is it better in Hawaii or just better? I don't feel that the improvement is drastic but when improvement comes on slow after six months you have a hard time comparing. I feel like my flare ups aren't quite as miserable. I think  my good days are much much better. I'm pretty sure my medium days are easier to push through and still do what needs to be done if it nothing else. If I were smarter or more organized or something I would have been keeping a day by day account of symptoms. I have notes on particularly bad days and out of the ordinary symptoms, but general prohibitive symptoms I take for granted. 

I think I will try to be smarter these next two and a half weeks and keep a journal of my symptoms and my activity level, pain level and degree of fatigue. 

I think this will be good for the four of us especially to be able to directly compare my ability to function. In the last two weeks we went to the mall to have dinner while watching our daughters friend perform at night, went to the beach with friends, went kayaking in a bay near us, we went to an evening school function that was outside, I got the warm clothes from storage and washed them and packed myself and both kids, I ran a ton of errands including a Drs appointment of course, I wrapped presents and we did two of our sons flag football game. All while I had a sinus and bilateral ear infections and am now on my second course of antibiotics…

I think that's it. 

Something tells me these coming weeks won't be quite so active. However, my confidence in my body has clearly improved as I have been scheduling tons of get together a with friends while we're there!

Probably way too much. In Hawaii I'd most likely be able to do it, but in the 50 degree, rainy, damp northern California the chances may be just a bit smaller.

I will have tons of adrenaline to help me through since I'm so excited to see my family and friends!!! 

Beach walks and ikaika (pushing through difficulty)

Our beach

I've said my emotional state is more fragile here. I'm not sure I've said it here but I've definitely said it to friends. This is unexpectedly severe. I feel responsible for moving my family here. And while my kids are thriving and my husband is really enjoying all of the outdoor activities offered here "There's just so much fun stuff to do here!" He said just yesterday, I have this feeling of responsibility. Warranted or not, true or not, it makes my bad flare ups stand out much more in my mind and my emotions. 

I try not to talk about this stuff too in depth with my husband. He's so amazing and has so much on his plate taking over the kids and house when these flare ups happen that I feel like it's only fair to try to keep my mood good and not dwell or wallow. 

I'm not a "why me?" Person, and I'm more likely to do something I shouldn't and pay for it later than not do something. I'm definitely not lazy though to some it may seem like it, those that know me know that I'm more likely to overdo it on a good health day so I can get things done! And I get really really tired of being in bed.

Anyway, this was all true in California and it's still true here. I push through the pain and more here because it's not as miserable when it's nice and warm, and I have gotten smarter about just not doing certain things and trying not to feel guilty about it, but I still have bad days. Sometimes those bad days turn into bad weeks and then my mind and my emotions just tank with thoughts of being a burden, worthless, moved my family here for nothing, if the sickness isn't better here then it won't be better ever, this was our "last resort" for getting me to live a life I could participate in, yadda yadda yadda. You can see how these thoughts can spiral, especially when you can't get out of bed and have nothing to do but think. 

I've decided that when these thoughts take over and I'm semi functional I will take a walk on the beach listening to music and guess what? It really helps! Of course the first time I did it I was feeling good and I walked 3.5 miles in the sand realizing later (and for days after) that it's harder to walk on sand and works different muscles in my back than the ones I typically work on! But after that disaster I got smarter and keep myself to one mile round trip for now. I'll build up slowly because my goal is to walk to my favorite little market, get coffee and walk back. That's about 5 miles round trip and while I can actually walk quite far on level ground, even to my little store, sand I have learned is a very different story.

So I have worked to snap myself out of the emotional days when I'm having a decent physical day. As I'm sure you've figured out this doesn't leave me an option for those times when I just can't get out of bed… going outside and sitting on our patio helps but sometimes even that is hard. So I'm still working on that if you have any suggestions.

Overall though despite emotional days I feel more like I'm living life here instead of just existing as a lump in my bed! And as a friend said that's huge. I need to be kinder to myself and remind myself of that. And I need to let it be ok that though my bad days may not be much less frequent my good days are unquestionably better and filled with awesome activities with my family. That is enough, should be anyway, I guess I just need to tell myself on my bad days that a good day WILL come around again even if it takes a while and the possibilities for that day are seemingly endless here whereas they were still very limited before. If I can get myself to believe that it should work yeah?

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.