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. 

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.

Ma'i in the land of aloha

Back in time a bit to the actual move...

So, it turns out packing and shipping a four bedroom house and two cars to an island in the Pacific is a lot of hard physical work. Who knew? The mental and emotional work is pretty cumbersome as well I must say.

But, we did it. We arrived in our new town four days ago! I really don't want to diminish the amount of work we have put in (though I think with any "distance move" it would be an insane amount of work) but it's really not that interesting so we'll move on 😉

The week before the move we were happily inundated with people realizing how soon the move was coming and stopping by for a hug and a goodbye, to help pack, to bring food and to generally be the amazing friends we know and love.

The night before the official 'house packed into the truck day' we had one last driveway take out get together with our cherished neighbors and friends. This, however, was not enough for these lovely people and it was decided a mimosa bar and breakfast was in order the next morning, and lo and behold it was set up on our lawn at 8am waiting for the movers to show up. That table and chairs stayed there until we drove away at 6 (maybe 7?)pm. So as the truck was filling and we were popping in and out instructing and helping the movers, the day was filled with more people stopping for a mimosa, a chat or a parting hug and tears. It was the best send off anyone could ever ask for and those of you who know us and our life in San Mateo know how truly incredible our friends and neighbors are and how incredibly important they are to us.

My health,sadly as mentioned before, did not hold up through the weeks of packing, the loads of boxes and the all day front yard sun party and as we drove away from our beloved neighborhood it finally seemed to have permission to give out. And give out it did. In spectacular fashion. We stayed with my brother that night and I arrived sunburned, sweaty, shaking, struggling to breathe and on the verge of physical collapse. So sadly our last night in California was not spent sitting on my brothers patio laughing and talking one last time as I had (somewhat foolishly) envisioned, but with me passed out in bed with my 12 yr old niece rubbing aloe on my sunburned arms and shoulders because I was unable to move enough to do it. It sucked, but that same wonderful niece made me a gluten free, dairy free pineapple upside down cake also so it wasn't all bad.

It is what it is and is a normal part of our existence so not really a surprise to anyone. Especially the fact that I was in that position because I am not so bright and physically way way overdid it…. 😜

Well we did it!

We moved our family to Hawaii. For my health. There are lots of feelings, sadness and regret around why we moved here, but I am mostly dealing with them. It's hard to be the reason your kids are unhappy. It's hard to be the reason we left so many amazing people in California. But it's heart warming to know that we have so much support in the move as well from incredible family and friends who just want what's best for us.

The difficult part today is that I've been in bed since we got here.
Not the way to start off a move that's supposed to be great for my health, right?

The move is the cause. Packing up a 4 bedroom house and 2 cars to ship across an ocean is a pretty big amount of work. And I can't even describe how much I overdid it. My body was breaking down before we even left the bay.  So, here we are.

It's surreal being here right now for me because it feels so natural yet dreamlike. I get excited when I think about the fact that I get to stay this time! Every year when we visit I threaten to just stay. I'm not sure if everyone realized I was serious... 

This move is the culmination of a dream I've had for 30 years along with the desire to live a more relaxed life, work and commute fewer hours, spend more time with our kids and just live our life in a family oriented community without the outside pressure we were feeling in the bay. And yes hopefully will lead to better health. So far I have to say I think we picked the perfect town and place. The people have been warm and welcoming and the feeling of aloha is alive and well! Now we'll have to see how this whole thing works out.... 😉

Meanwhile the view out my window....

Sadly not the view from my bed though. Lol. 

Just going to stay right here....

Today is a bad day.

          

 (Without and with flash)

For good reason but still a bad day. I have been in bed all day, still in my pajamas alternating between listening to books and watching bad tv and staring at the wall when my brain really fries itself out of commission.
I could get up today, but some days I don't want to fight through the pain and exhaustion to do mundane tasks like make dinner. Some days I don't want to "be strong" or "suck it up". That's today. So today I am working to accept that I'm just going to stay here and not feel guilty for being sick and for not doing what I, and only I, think I should. And I have to say it's going quite well today. It is what it is. I don't need to prove to anyone that I COULD get up and make dinner and put kids to bed and straighten up my mess of a house from camping. This is a nice peaceful feeling. I don't know why today it comes so easily when other days it just won't come at all, but I'll take it.


Wanna see how easy it is to lie though?

Attitude and foundations

A conversation this
morning led me to thinking about attitude, happiness and perspective. I realized that, in my mind anyway, your overall attitude, perspective and outlook on all things in your life (not individual things, problems or people) can be the foundation of your existence.
If you have a horrible attitude and are a negative person what kind of spouse, if any, will you find? What kind of kids will you raise? How can you further your career or have good working relationships? How can you rely on family support if you are miserable to be around? How can you expect to have a positive life with a negative attitude? I'm not saying these things aren't possible. But perspective changes them I think.
Life is made up of so many parts. If one part goes wrong do you throw all the others away?

Or do you take that part and let it strengthen you and recognize the good parts?

I by no means think these are the only two options. The actual day to day life of humans lies somewhere in between but it does create differences in people in the same situations. Do those differences matter in the long run? Food for thought. 

Summary of the Spoon Theory

"Most people don’t think twice about the energy it takes to shower, get dressed, and drive to work. Most people can go to the grocery store in the morning and make dinner in the evening. Most people can make plans and keep them.

When you have chronic disease, you’re not like most people. Multiple sclerosis (MS), autoimmune forms of arthritis, and many other conditions can cause extreme fatigue. On a bad day, you may not have the strength to even brush your teeth.

In a blog titled “The Spoon Theory,” Christine Miserandino described how she showed her friend what it’s like to have lupus. (The autoimmune diseaseoften causes fatigue, fever, and joint pain, among other symptoms.) While sitting at a diner, Miserandino handed her friend 12 spoons. These represented units of energy. She then asked her friend to describe the typical activities of a day

Miserandino took away a spoon for every single task: showering, getting dressed with painful joints, standing on a train. Skipping lunch would cost a spoon, too. When the spoons were gone, it meant there was barely energy to do anything else.

This idea of quantifying energy as spoons, and the idea that people with chronic disease only get a handful of spoons each day, hit home with readers far and wide. “Spoon theory” is now part of the lingo of autoimmune disease. Legions of people call themselves “spoonies,” connect on social media as #spoonies, use spoon theory to explain their chronic disease limitations, and plan their days around the number of spoons they have when they wake up.
People without chronic illness get unlimited spoons, or at least more than enough than what they need

Selflessly kind in the middle of the woods

"The energy you put out to the universe is the energy you get back."

"Whatever you look for and expect to see in the world you will find, look for kindness and you will find it."

These are two of my favorite quotes. Always have been. And I firmly believe them. I truly believe that a big reason I have lived such an amazing and blessed life is because I follow them. And I am constantly reminded of them and my belief is consistently validated in my daily existence.

This time it came in the form of generosity and true selflessness. I love the phrase 'thoughtlessly kind' and this truly was that as when I pointed out to this person how amazing what she did for me was she responded with a truly baffled "what did I do?"

This weekend was the amazing girl scout camp weekend. Those of you who know me personally know that Girl Scouts is extremely important to me and my daughter and that I value and strongly believe in that wonderful organization. This weekend was a very special mother/daughter weekend and that, as well as being a troop leader, meant I was not missing it under any circumstances.
To put this super active weekend in small perspective: I was told several times last year "I'm healthy and this weekend is overwhelming and utterly exhausting for me". And I was asked more than once while there "how are you doing this? I can't believe you're here".
So that gives you an idea of the difficulty (and fun!) of this 42 hour jam packed event.
In true GS fashion we moms are each required to volunteer for a 2-3 hr shift at camp. My job this year was in the craft shell from 10-12 Sat.
Now, background- last year I was unable to make it to the campfire /talent show at the end of the big day because my body was just too exhausted from so much hiking, walking and just DOING. My thoughtful 7 yr old at the time decided to go back to the cabin with me because "she didn't want to go to the campfire" which I later learned actually meant "I felt bad for you and wanted to spend time with my momma". Yeah❤️
So this year I was worried about this. My little girl said she really really wanted me to go but it doesn't even start until like 830 or 9 pm. After a day of major activity all over the woods.
Now that you have all of the pertinent history...
As my troop mom's and I were standing watching our girls do archery (in the 90 degree heat at 930am!) one asked me what my "official" diagnosis was. This led to a discussion of symptoms and spoons. As these two mom's listened to me describe the spoon theory and mention how I wish I had let them know ahead of time that I couldn't volunteer (I HAD let them know certain limitations I had and what I needed from them in order for me to be able to go, but shirking my volunteer responsibility wasn't something I was ok with at that point) because I was already running low and wanted to spend my spoons hanging out with my kid, not volunteering without her for two hours. I really wasn't complaining or whining, it was just a fact. You can guess what happens next.
Without hesitation:
Mom #1 "do you want us to do your volunteer shift?"
Mom#2 "yeah we can just split it"
Me(of course) "no no I'll be fine"
Mom#1 "don't be silly you should save your energy"
Me "this is not why I told you guys this!"
Mom #2 "oh my gosh we know. The fact that you volunteer to be a girl scout troop leader tells us that and says a lot"
Mom #1 "the girls want to do crafts at some point anyway. We'll take them now so we can volunteer and do crafts with our girls. Not a big deal"
Me "but.... I don't know. Are you sure?"
Mom#1 "yes. We want you to make it to the rest of the day. Its silly to use energy for this. Go lay down until lunch and don't think about it again".

I made it to the campfire that night because of those ladies. I told them many times how much it meant to me and how huge a deal it was for me, but I don't think they can ever know what that meant to me and my daughter. To them it seemed simple and easy. To me it was huge.

Small acts of kindness can change big things.
Thank you again ladies.

                      

Stanford you have been forgiven

I have to say my first experience with Stanford specialists left a lot to be desired. M and I walked out of the building shell shocked, flabbergasted and disillusioned.
Today they have redeemed themselves.
I spent 5 solid hours of my day in the Autonomic Clinic of the Neuroscience specialty of the neurological department at Stanford hospital. Not to name drop or anything. Sounds fancy doesn't it?
This is one of the top clinics for Autonomic nervous system disorders in the world. These specialists are few and spread out internationally.
I'm extremely lucky to live 20 mins from this clinic and to have Drs who referred me to see them.
The testing was mildly brutal I must say, but the technician and I became friends over my two and a half straight hours in his lab so it ended up being enjoyable getting to know and chatting with someone new. Which is one of my favorite things of course.
He was thorough and apologetic when his tests were dizzying, nauseating and difficult but we got through them all.
He mentioned probably five times over the course of hours what a positive person I am in the face of a gazillion issues and what a great attitude I have and he even said thank you for that! It was lovely. It made me feel bad for him a bit dealing with unhappy people all the time? so I asked him:
"Do you get a lot of people who come in here just miserable and grumpy and complaining?"
"Oh yes we do, and I understand that as well. They are dealing with horrible stuff. But you remind me it's all about perspective in life. You change your perspective just a little bit and it changes everything. So thank you for reminding me of that." Deep thoughts in the Stanford Autonomic testing lab. And I must say that's one of the biggest compliments I have ever received! I really appreciated his candor.

When I left my new friend, after convincing him to go to Hawaii on vacation and take his parents to help with their new 6 month old girl, I was off to the Dr to interpret the findings. (And I could finally get coffee after fasting for sooooo long!)
This time this Dr, same one as before,  was more personable, provided relevant information and explained things thoroughly. I left there feeling good knowing that I had been thoroughly tested, poked, prodded and examined and confident in the information I now had. And reminding myself I should know better than to judge by just one visit.

The news isn't great. I didn't leave happy with the actual information, but from the perspective of a chronically ill person answers are awesome, good or bad really. It's a twisted world we live in.

So for those of you who are paying attention to/interested in the technical  medicals side of things he is very confident that the lupus diagnosis is correct because the problems he found are only caused by a handful of things- one of which is Lupus. (The others were instantly ruled out actually). So what it is boiling down to is systemic Lupus with cardiovascular Autonomic neuropathy and orthostatic hypotension.
Quite the mouthful huh?
Basically it's:
Lupus- attacks the connective tissue and
It effects all body systems -systemic
With
Cardiovascular- the heart and blood vessels
Autonomic- the part of the nervous system that controls automatic functions; in this case mainly heart rate, heart filling and emptying and blood pressure
Neuropathy- nerves gone wrong (diseased, malfunctioning, dying, etc in my case malfunctioning because they are being attacked by my immune system)

So because my immune system turned bad and is attacking me (the Lupus) the nerve that controls my heart isn't working, so it doesn't tell my heart to fill and empty when it's supposed to, to pump the blood out when and how it's supposed to or not to beat so fast when it doesn't need to. And the nerve to my blood vessels isn't telling them to constrict and relax regularly and when they need to (so my BP is inconsistent- orthostatic hypotension means my BP drops when I stand up). So my blood isn't going anywhere it needs to be when it needs to be there if you think about it.... Lol.
This explains why I stutter and can't think straight so often. There's no blood in my brain! I wonder if I'll be smart again if I hang upside down.... Hmm food for thought.

So that was my day. Wasn't a bad day at all. The sun was shining, they gave me a coffee and lunch break so I walked to Starbucks. I met some nice people, learned some cool stuff about the nervous system and got some answers. All in all a pretty good day.

What is that? An FYI post

Many people have asked me what Lupus is. For those of you who know who Salena Gone is or Sarah Hyland may have heard of their kidney transplant. Those were due to lupus. It is autoimmune and attacks your connective tissue. The most concerning place this happens is the kidneys. It was the kidney test that really set off the current alarms. We're still testing and trying this lupus treatment before there is any final decision on the diagnosis, but we're moving closer to a specific diagnosis (my current diagnosis is undifferentiated mixed connective tissue disease which means it's missing a few things to be lupus, but is very similar. Lupus is more dangerous than undifferentiated which is why the diagnosis is hard to pin down and is the focus of all of the testing).
More to follow soon.... I hope!

Holy rain Batman!

It has been raining off and on for weeks now. Cold, so damp it seeps into your bones. This, as we know, is the absolute worst thing for my stupid body. Hence the big ass move to an island 2000 miles away. Everything hurts. I'm exhausted.
Yesterday my Dr actually prescribed naps. Naps!  Every day at the same time no matter what. So, today I fought and fought to not lay down until noon- our designated nap time- and now I'm lying here utterly miserable. This cold damp rain is really knocking me out!

40 days until my body won't have to deal with freezing dampness and cold rain!

Confusion, relief and nausea

So, I bet you thought we were done with that whole Lupus thing huh? Funny.

So many symptoms so little time, so I'll cut to the chase and say lupus was never really taken off the table but "undiagnosable at that time". New symptoms necessitated 6 vials (normalizing chronic pain) worth of blood tests and two seperate  urine tests days apart. All precautionary. Of course until the results came back!

Results are concerning and enough to begin lupus treatments.

Today I'm too tired and emotionally off to finish this post how I'd like, but suffice to say side effects of these new treatments may make them unfeasible for me. I'm giving it the best try I can since the meds take months to get into your system and take effect.
So for now managing nausea, dizziness and exhaustion have consumed my days these last couple of weeks. I'm getting better at it but I'm going to go now, recover from this post, talk to my Dr and sleep to prepare for commitments tonight that I will not miss.

Aloha! 41 days to relief?

I have no pictures of my birthday

Because I spent the entire day asleep in bed.
Why that day? As I told M "my body doesn't give a shit that it's my birthday". My daughter made me a brownie cake for breakfast (our family tradition), I woke up long enough to eat some of that, open the gift from my little loving family and went back to bed for the rest of the day. My kids went with their dad to get Legos so they would have a good day and I saw them all again for a quick picnic dinner in bed with me. I haven't seen them since then.

It's not the birthday really, at least not today, because I don't have the energy to care. But what I do seem to have the energy for is lying in bed, today in tears, waiting impatiently for my Dr to call for our scheduled phone appt so I can go back to bed.

My husband and kids make my life work and worth it. I'm lucky beyond words to live the life I live. I truly never forget that. But like anyone some days are better than others right? But I'm still here so
Happy birthday to me! 😁😍

Wait...wait a minute.. seriously what is going on?

Another unsolvable puzzle.
Soooo remember how I said the specialist approved IV hydration when I'm desperate? M was there, he heard it too! Well he didn't exactly relay that to my Drs. In fact, the opposite he apparently said.
And remember how I said they were going to give me prescription stimulants just so I could get out of bed on bad days? Yeah not so much that either.

The conversation this week went something like this:
Me to Dr #1 (GP): so can I get the stimulant prescription we discussed?
Dr#1: yes but you have to get it through Psychiatry

Me: ok, hey psychiatrist (dr#2)  can I get the ritalin we discussed?
Dr #2: yes but I need to check with Dr #1 to make sure it doesn't conflict with other meds you take.

me: ok...she'll say yes

Dr#2: ok Dr#1 says no. Risk of heart issues down the line. I will research and get back to you.

Me: but... she said... Whatever. Fine.

Me to Dr#3(cardiologist): ok so my prescription for a stimulant is held up right now pending approval. In the meantime how about we try that other med that increases my blood pressure to see if it works better than this one on my energy level? For the record I still think non pharmaceutical IV saline is worth a try...

Dr#3: you need to discuss Ritalin with your other Drs, I can't prescribe that. And I'm going with your specialist and agree IV saline isn't a good idea.

[This is also when I realized my specialist lied to my face]

Me:......

Ok.... What about the medication I actually asked you for?

Dr#3: I don't like prescribing that medication because it has potentially serious side effects. You can try it but I don't recommend it and won't give it to you without more blood work.[sends link with all heinous side effects listed]

Me: ok..... So can I have just the IV hydration for now then?
Dr #3: no
Dr#1: no

So, for those of you following this circus they won't give me a stimulant to help me have at least a tiny bit of energy because I may develop a heart issue in 20 yrs.
They won't give me the other BP raising med because it has dangerous side effects.
They won't give me simple salt water, used to hydrate millions of people daily, into my veins because.....



Crazy making isn't it?
So my psychiatrist is researching other options for stimulants....and we're waiting.

In the meantime Dr #4 (rheumatologist): wants a full panel of blood work due to new symptoms and this crazy debilitating fatigue. Maybe she'll do something.

The curse of multiple illnesses isn't the illnesses themselves it's the fact that each illness comes with it's own specialist. Argh.

Eggs with stitches

Persistent postural perceptual dizziness (PPPD), sensory ataxia, orthostatic hypotension, dysautonomia, pots.
Alllll of those added at stanford and not one has a proven treatment other than the pppd.
They're going to give me Adderall or Ritalin just to help with energy. The med to raise my BP seems to be helping the symptoms it should help. Otherwise "sorry, there's nothing we can do."
Super specialist sent his eval to my drs and we will go from there. 

 The orthostatic hypotension is being helped by midodrine to increase my BP plus hydration packs and 12,000 mg of sodium. Yep. I can't eat that much so I take salt tablets. 

For the persistent postural perceptual dizziness (PPPD), which is sort of like chronic vertigo, there is something called vestibular rehab, which means they need to retrain my brain that the world isn't moving even though I feel like it is. This explains why I randomly fall over, have no balance or equilibrium and am dizzy when in a car or moving a lot.

The sensory ataxia (with my eyes closed I have no idea where my body parts are in space and I can't feel all of my feet) there's nothing to be done but honestly that's not a big concern unless I have to take a drunk test. Cannot touch my nose or walk a straight line lol. Mitch said it was painful to watch me try to grab one hand with the other with my eyes closed and miss by a good 6 inches.

But the main one that he theorized could be causing the severe fatigue and body failure and weakness is myalgic encephalitis/ chronic fatigue syndrome. There's no fda approved treatment for it so my Drs will give me stimulants like Ritalin or Adderall just help the symptoms. The main cause as far as they know is inflammation of the brain. Nothing you can do about an inflamed brain apparently but it explains why avoiding inflammatory foods like gluten, dairy and sugar has helped so much. I don't actually meet all of the criteria, but he seemed to think that's what it could be.  It's basically being sentenced to bed for the next 30 yrs. I was really trying to avoid this particular diagnosis, and I honestly do not think this is it. Like I said I don't meet the criteria, plus my neurologist already told me that's not it and my fatigue can be explained by the dysautonomia/pots. The reason for the fatigue isn't my main concern. A treatment is. So the prescription uppers like adderrall or ritalin should help as well as the fact that he authorized hydration by IV when needed. 

I had hoped that he would have answers regarding treatment but all he did was confirm my current diagnoses, add a few and say basically that what I was doing/told to do by my kaiser Drs was what I should be doing. 

So, I realize now it was silly of me to put so much pressure on this appt. I was devastated when we left, but now I see that it confirmed that my Kaiser Drs are awesome and that all Drs are just human.

Broken eggs

It is finally my appointment with one of the top Drs in the world for autonomic dysfunction/ failure! I've been waiting for months and all of the insurance and referral paperwork is finally good.
This Dr happens to be at Stanford in one of the few autonomic clinics in the world, lucky me it happens to be a mere 20 minutes away!!
So, tomorrow I visit the autonomic clinic in neuroscience of the neurology dept at Stanford. Lots of fancy words to hopefully mean they'll know what to do for me. And yes, my eggs are all in this basket. I learned

not long ago to not do that. To never get my hope's up. No expectations and you can't be disappointed. Or more accurately heart wrenchingly devastated.  But all of those fancy words and the research I've done on this clinic makes me honestly think they will be able to give me some sort of option other than to take a medication that is on the verge of being discontinued by the FDA and "carry Gatorade with you and eat more salt". Yep, that was actual advice from Drs for the fact that my blood pressure plummets when I stand up.
You know its funny, I'm so anxious for this appointment but at the same time almost don't want it to happen because this is it. The best if the best. If they can't help me no one can. So if I haven't gone yet, there's still that magical chance that I will actually be able to feel better someday.

So will my eggs break? Or.....

Stay tuned.....

Managing expectations - part 537

One of the most impossible things to do in life I think is manage expectations, but especially In chronic illness. Not the expectations of others as it might seem. Not even my expectations of myself really, though those are in my thoughts and heart at all times. The expectations I find it hard to manage are the imaginary ones. Ones that literally only exist in my head.
I make up expectations that others have of me. I think a lot of us do this, I'm not unique, but this is the latest and truthfully most ongoing thing I think I deal with.
I believe I know what other people's expectations are of me. I'm wrong. And the line between my expectations of myself, which are always unreasonable high; and my husband,

Ok anyone who knows me knows why I picked this one, but it's still true 😂

friends' and children's expectations is very blurry for me.
I don't have any great answers or insights on this. I wish I did. I do know that until I can reconcile my unreasonable ones and the ones I make up and understand others actual reasonable ones (and often even irritatingly low ones) I can't be at peace with being sick all the time.

None of this makes sense. I know. It's crazy and irrational to impose my made up expectations on other people, and frankly extremely unfair. My expectations of myself are super hero high, as my husband likes to tell me, but that shouldn't make me frustrated and worry about not living up to them for others sake's
right? Yeah, I'd laugh if it wasn't what is bothering me today as I sit in a dark room waiting for M to get home from work after picking up our little boy. A little boy who asked to be picked up early but I just couldn't (in all fairness though even when he asks to be picked up early he gets mad when I actually do because he has so much fun at his after care program. He's very indecisive sometimes lol). Meanwhile I'm trying to think of an easy dinner to make or have someone else make and listening to my daughter play with her friend.
Definitely not a new situation, just the current one. And it's reinforcing my arrogance in thinking I know my husband is expecting dinner when he gets home and was expecting me to pick up B and I'm failing him right now. Thinking my daughter is in her room playing with her friend thinking her mom is lazy so I'm failing her too. Thinking my little boy expected me to pick him up and is hurt and mad that I didn't, once again failing. Logically and cerebrally I know I'm not failing "them", and that none of them are thinking any of those things, but damned if I can get that through to my actual thoughts and emotions. See, I've taken my expectation of me and made them THEIRS. How unfair and cocky right? Yep.
I am expecting to do those things and not being able to do them is making me sad for my family and angry at my body and we know, from vast experience, that that is a complete waste of everyone's time and energy. Yet I can't seem to get out of that loop.... apparently I'm really slow in this area....