I could not have imagined a winter as warm as this. Today has felt more like summer than it has winter. Around Christmas we had 3 weeks of Autumn-like weather – seems that was our winter!
Along with the warm weather is more air pollution in the winter from VOG – volcanic gasses which are heavy in sulfur. They tend to linger at times due to lower Trade Winds and cause the air to feel heavier, more polluted. How polluted? Well, I’d take VOG any day over all the wood smoke we’d have this time of year in Washington. Not to mention the presto logs – those things were toxic to be stuck downwind in their smoke! On the other hand, we are more sluggish on VOG days and it can cause headaches at night for me.
Sunshine – we are in the midst of a lovely period of sunny weather. Weeks of it even!
I remember in Washington we had two warm winters when the winds came up from Hawaii bringing sunshine and zero snow. We always daydreamed about how wonderful it would be to live someplace where it was always that warm – now that I’m here I must say it’s a fair bit warmer than I would have believed possible!
T-shirts and shorts are the norm and still you’ll find yourself a bit hot by noon. I love it!
In fact, I love it so much that I did something today which exemplifies winter in Hawaii better than anything else I could say at this point.
I went skinny dipping in the ocean!
It’s been years since I last stripped off my clothes and hopped into a body of water. Doing so today felt like gaining back a small part of myself which was lost when illness struck.
I may still be tired and sick, but I can swim naked in the ocean with the warm sun upon me like a younger me once enjoyed.
That makes me happy.
For the last month I’ve been having some persistent difficulties with my health. Shortly before moving here I received some blood work back showing my white blood cell count was low – aka, my immune system was weak.
Combine that with an enormous amount of exposure to viruses now that I’m able to get out in the world again and it leaves one at times feeling a bit under the weather. The last few months it has been a mild case of the flu or cold, over within a day or two until the next one would hit a few weeks later.
However, for the last month I’ve had bronchitis. With my history of mild asthma it makes for a bit of a mess. I am slowly recovering and doing much better than I was a few weeks ago, but still having some breathing trouble most days.
This leads to yet still more fatigue, increased recovery time for anything physically strenuous, more things feeling physically strenuous than normal, and a whole lot more time spent resting.
I have a fun project planned for Sundog Tales in the (hopefully) near future.
Until then I shall keep working on beating this virus and recovering from the strain it is putting on my body.
Last week was my 35th birthday. I had many ideas for how I would be spending the day, but ultimately a week long asthma flare narrowed down my choices.
Yet, that didn’t stop me from having a fantastic day. Ultimately I knew my day had to involve two things – I needed to be at the ocean and it there would have to be pie!
The day began with a beautiful sunrise. It’s difficult to describe how incredible the sunrise can be here. We have an east facing apartment and some mornings I can hardly wait to get out of bed after glimpsing the magnificent colors in our window. I would have posted a picture, but my camera has yet to capture the clarity and brilliance of the dawn.
Breakfast, a bit of early birthday pie, and presents soon followed as we made sure to have a lazy morning. Then it was off to the beach!
This time we went to a small beach we frequent, called Lower Paia Park. Other than the occasional tour group, this seems to be more of a locals beach. The waves had a couple feet of swell, which looks daunting from the shore, are a blast to go swimming in!
Sometimes you can float over the waves, they simply raise you a few extra feet higher than you were before quickly passing on and leaving you in their wake. Other times you have to be quick to duck under them when they are extra large and break before reaching you.
These are the more exciting waves because each time they pass over you, its an amazing amount of energy running down your back and tugging at your feet while the surf surges toward land.
After a surprisingly long swim, we changed out of our swimwear and headed to a second beach – Ho’okipa. We were off to watch the surfers while having our picnic lunch.
Shortly after we found a spot to sit, a surfer chick came along to try surfing in front of our position. She was very new, likely has only tried surfing a couple times so far, and it made for some good entertainment. We quietly cheered her on each time she struggled to catch a wave, her legs wobbling under her, and hoping this time she would be able to stand on the board.
During a lull in the surfing action, we ate our lunch and Jeremy sung me Happy Birthday. This is the first time in many years we’ve had a candle. They were never something we thought of while living in the tent and luckily an Aussie friend fixed the problem by sending one along as an extra secret gift just in time!
The sweet potato pie was amazing. I’ve never had it before, though I’ve always been curious as to what it would taste like. Our sweet potatoes are purple on the inside which added to the festive nature of the pie.
After swimming, picnicking, and surf watching it was time to go home. After paleo meatloaf for dinner (and more pie of course!), we watched a couple movies that both turned out to be rather dull.
Bad movies didn’t change anything – it was still a fantastic day!
There have been many changes brought to my life since leaving the tent three and a half months ago. Some are obvious such as indoor plumbing, a full kitchen to cook in, even a table with chairs to sit at while eating a meal. A few things haven’t changed – sleeping on the floor for example.
When thinking of which change I enjoy the most it’s impossible to really place an order as each one is magical in its rediscovery. Is it the hot shower on a morning when I can’t get the chill out of my bones or maybe instead the yummy dinner while sitting at our table and enjoying a rainbow on the horizon.
Some days it’s simply the act of riding in the car while Jeremy drives us along the coast towards a morning swim in the ocean before doing errands later that day. A massive weight of illness, wrapped so tightly around me as to leave me claustrophobic in its suffering, has been removed at long last.
In fact not a day goes by when I don’t at some point marvel and wonder as to how all this has come to pass, while at the same time being enormously grateful for the life saving miracle.
One change to take place is an ability to read books again – not just e-books, but a hold it in your hand, turn the page, quickly skip back to catch that last word you turned the page to fast to read, ink and paper, smelling of adventures yet to come and fond memories of journeys past … a wondrous book.
I love books, always have and no doubt I always will. I’ve worked in three different bookstores and they were the jobs I enjoyed the most. The last bookstore is even where Jeremy and I met. He started coming in every Saturday morning to browse the science fiction/fantasy section and I happened to work that shift, also with a love for the same genre of stories.
I deeply mourned the day my MCS closed my ability to read books, the inks and paper making me ill regardless of how aired out they may have been. Over the years I began to read e-books and again found joy in an old friend, but still I longed for the real book in my hands. The sensory experience was lacking and the electronic text difficult for my fogged brain to hang onto. Plots blurred, descriptions were lost, and over time reading was becoming extinct despite my desires to the contrary.
Then on a whim I had Jeremy pull into the library here in Maui on a particularly beautiful day. Cautiously we entered, unsure if we would be able to stay for more than a few minutes. As the doors slid open before us and the air conditioning greeted us I felt a great joy begin to stir within me – this might be possible.
I imagine we look rather odd in the library as we search first for a book we are interested in reading, then cautiously fan the pages before our nose while lightly sniffing for lingering odors which would make us ill. Often times we then place the book back upon the shelf, but occasionally you’ll see our faces light up with delight at having found a gem to take home.
Over the last six weeks I have been voraciously reading all different types of books, finding a fantastic word of opportunity opening before me. Even though my health has again been on the low side the last several weeks, it is much easier to rest and recover with a good book. I feel less anxious about missing out on life because I am incredibly grateful for the gift of reading again. It makes passing the times I am again bedbound a joy instead of a jail sentence.
Yesterday I read a good book. Today I did the same. Tomorrow I think I’ll read another!
I just finished writing a postcard to send to Dr. Buscher, the physician we have been seeing these last 7 years. It was a surprisingly emotional experience.
He is a man who stood by us when many a doctor would have walked away. We were never made to feel like we were the reason our health was failing, but instead he understood that we did everything we possibly could to become well again. Considering the months it would take for us to go from him handing us lab work papers and the tests actually being run, months again between visits, and a severe lack of money complicating things further – he never gave up on us.
And when times became darkest last year, I couldn’t find my way out of the nightmare my health was plunging into – Dr. Buscher was there to light the way and guide me back.
Without his help over the years, it is unlikely we would have made it to see this wonderful island of Maui and find joy in living again.
Thank you Dr. Buscher for everything you’ve done and my only regret in moving to Hawaii is that I couldn’t take you with me!
Wow, I have been wanting to post here for weeks, but never find the time and energy at the same moment while also remembering.
Life is moving along much faster than either Jeremy or I are used to. Due to a few MCS related problems both at home (neighbor) and simply learning about which places are too toxic for us, we have been having less energy and more brain fog. It is at times frustrating, but overall we are doing better than we have for years and that is something we always try to remember.
Given time we’ll no doubt be doing better again. Mainly need our neighbor to stop his toxic repair project so the air becomes cleaner for us again at home. We have spoken with him and it’s mostly finished, though he’s currently waiting on a part from the mainland before he is completely done.
Our big news – we now own snorkel gear! We have been snorkeling three times in the last week and would happily have done more if the snorkel conditions cooperated. I suspect the snorkeling is also partly the cause for our fatigue. It is easy to lose track of time while exploring the reefs and shoreline looking for treasure to bring home. So far we have found a few fishing weights and some nice shells.
Our first trip out we saw two sea turtles. One was HUGE, though we only caught glimpses of it before it swam off. The second was a much smaller turtle, likely a fairly young one still as it was no more than a quarter the size of the adult. We swam along behind him as he surfaced several times for air and had a bite to eat from the coral reefs.
We also had an adventure to the westside of Maui (we live on the eastside). This tiny bit of beach is a great place to find sea glass. I think we came home with a couple pounds of glass, much of which is jewelry quality. Now we just need to turn it into necklaces, bracelets, and earrings!
Aloha until the next adventure!
What does a month in Maui look like? All of these pictures are from today, exactly one month since we landed here.
Our big snorkeling adventure was a blast!
It’s also a lot of work on this previously bedbound body. Amazingly we snorkeled for about an hour before needing to get out of the water. I spent a fair bit of that hour simply floating while watching the fish on the coral below me. I have never snorkeled before, only wore the gear in the swimming pool a few times and the bathtub as a kid.
It was just as peaceful and relaxing as I had always dreamed it would be. I think the experience will only get better as my physical conditioning improves and I can move around easier. Though we spent an hour in the water, we both would have been happy staying in there all day.
My mom always said I was part fish because I would often be the last kid left in the pool or river even after everyone else was long since out. It was nice reconnecting with the part of me who adores swimming and feels incredibly one with the water.
We did learn one interesting fact shortly after we were done swimming and went onto the beach to dry off – there is a price to be paid for that much fun. Not only have we both ended up with sore muscles all over and various light sunburns, but apparently the ocean water is going to stimulate heavy detox.
The sore muscles and burn was expected, but the detox was a big surprise. Complicating things for me was having water trapped in my ear making me even sicker. Luckily some of it passed within an hour out of the water, but the majority of detox symptoms persisted all day and into the next.
While detox is a good thing, it can be a little overwhelming at times – especially when caught completely by surprise. We will be more prepared next time and recover quicker. In time, this detoxing should allow our health to improve considerably as long as we do not push our bodies too hard, but instead keep it slow and steady.
Again I find myself wondering where our health will climb to in the next several months as everything seems incredibly promising for the first time in a decade. If ever there was a doubt moving to Maui was going to be a life changing adventure, those doubts are fading like fog hit with the first rays of a welcoming sun filled morning.
Here’s a few pictures Kimberly took of the trip:
The good news – yesterday we bought a car! It will need some work to be low toxic and fully comfortable, but for now it is enough to get us to the store without problems. We just won’t be going on hour long trips in it for now.
Within five minutes of paying for it, we were on the road heading back to Baby Beach. It was nearing sunset and we wanted to explore what having the freedom of a car felt like again.
It was great.
The bad news – while we played in the waves and walked along the beach, someone was stealing the last couple gallons of gas from our car. We naively left the car open, windows down, so it could get fresh air through it. For the thief, this plus the cover of near darkness made a tasty target to get easy access to our gas tank’s lid release lever and our gas.
It was a bit hair-raising on the way home when we noticed the gas light on – tank nearly empty!
Luckily we did make it back, but the nearest gas station is further away than we feel comfortable driving to on an unknown amount of gas with a car we are not familiar with. And so our first adventure turned misadventure in the end.
We will find a friendly bit of help somewhere to get a gallon or two of gas brought home, then make it to the station to finish filling up. This is the first time we have driven a car since gas prices became over twice what I remember last paying, a good lesson was learned last night and won’t be soon forgotten.
Meanwhile… off to snorkel today and another adventure!
A few photos to show we really are in Maui! I have many more I will work on uploading over the next several days.
First up – we have gecko lizards who hang out on our windows, especially the bathroom window. They have learned light attracts moths and moths are a good meal. It is interesting to watch them hunting at night. They mostly stay on the outside of the window, but this guy decided to go for a walk around our apartment before scurrying back to the bathroom window after I took his picture.
It seems to rain at least a little every day here in Haiku, Hawaii. Our first day here was a beautiful sunny day and then it rained the next 6 in a row! This picture was taken a couple nights ago off our front porch. Fantastic to see a double rainbow out our windows!
Next is a few from our big day out today. I met Kimberly through an MCS forum, The Canary Report, and she lives here on Maui too. She offered to take me and Jeremy around to the farmer’s market in Makaweo for some fresh produce then into Paia to Mana Foods for the rest of our grocery shopping as we still don’t have a car.
Kimberly brought her daughter Emily today and it was a blast meeting them. This is the first time in a huge number of years I have had a friend I could actually walk up to and give a hug.
A hug was the first thing I did too!
I forgot I had the camera for the first half of our day and will post pictures of the Farmer’s Market next time I go. It was a very small one compared to others I have been to, but the produce looked really nice. Good prices too – we picked up two cabbages probably close to 5 pounds each and they were only $3 a piece! It looks like the market will be a good spot to order organic, free range chicken once we get a car and can pick it up after it grows from a young bird.
We also stopped at a small produce stand on the outskirts of Paia. It did not have much variety, but the proceeds go to help the disabled people who are being retrained to grow and sell their food through the stand. It gives them good jobs and is nice to know I’m helping to support them.
Paia itself is a cute little community right on the Northshore. Kimberly had offered to treat us to lunch at one of her favorite places here – The Flatbread Company. It turned out we were early and so to kill time Emily drove us all to Baby Beach.
Finally after 9 days on Maui, Jeremy and I met the ocean. The sand was warm, but not to hot. As the water lapped at my calves it was refreshingly cool. The wind was a bit strong today and a constant force to stand upright against.
I washed sea water over my face and head, wishing I could find a deep area to jump into full body. As nobody had brought a towel and much of the trip was still ahead of me, I opted to keep everything but my legs dry. Thank goodness Jeremy and I bought shorts before coming here!
I manged to come home with only a few pieces of coral in my pockets, Jeremy had a few shells to share from his. It was with great effort I resisted the temptation to fill every pocket I had with bits of wonder found in the sand.
Next stop was for lunch. Did I mention The Flatbread Company is a pizza joint? Fantastic, fire oven pizzas on the only gluten free pizza crust I have actually enjoyed immensely. I’m not usually a fan of thin crust pizza, but I was aiming for the crust on this one!
I had thought the pizzas were small personal ones and so Jeremy and I ordered one each. It was a surprise to see they were approximately a foot in diameter each. While we were there, Kimberly had another daughter join us and she brought a friend so the extra food worked out well. Kimberly even let us take the leftovers home – yay! I must say, this pizza is worth stopping for if ever you find yourself in Maui. The pepperoni and mushroom is killer – all organic and super yummy!
Our final stop was at Mana Foods to finish off our grocery shopping. One thing we forgot to pack had been our toothbrushes, they were left behind in our rush to make the plane. We did pick up a pair from the local store in Haiku last week, but they were lousy ones. I am thankful Mana Foods carried everything we needed today from MCS friendly laundry soap to toothbrushes and canning jars – along with a huge assortment of produce for rounding out our next couple weeks of eating.
At the end of the journey we had a bag for Kimberly of fresh limes, guavas, and a couple bananas we picked ourselves yesterday. It felt really good to be able to share some of the fruits growing here around our apartment in thanks for the trip today.
Another hug and plans to meet up again next week, this time likely for snorkeling, saw Kimberly and Emily on their way.
For those who have been long time Sundog readers or browsed back a ways, you’ll know how much I have longed to be free to hug those around me. It has been a bane with my MCS to be unable to do so all these years other than the rare occasion I was in my ‘town clothes’ and could come in contact with whatever toxic products were on the other person. I don’t know what has happened here in Maui, but from the moment I set foot off the plane my MCS has been considerably improved.
Today I hugged a friend for the first time in years and I am sure it won’t be the last.
I have been here in my new apartment in Maui for a week now. After 9 years, 6 six months, and 1 day in a tent we are finally indoors.
Maui is a beautiful place and it already feels like home. There was about two days of culture shock in which I had to adjust to wild chickens and many close neighbors, though I am more accustomed to it now. Hopefully in the next few weeks I will learn to sleep through roosters at 6 am and neighbor noises through the walls.
I have many pictures, but have not located the cable to download them from my camera. Most things have arrived in the mail unharmed, though my pc was not one of them. For now we are back to being a one computer family and I find it to be rather pleasant. It encourages us to interact together instead of being less than a foot apart physically yet miles away mentally.
I find myself feeling no worse than I would have mere weeks ago and often I feel noticeably better. This is very promising of future things to come for healing. Our apartment is steadily airing out and has promise to be an MCS safe haven despite having semi-toxic neighbors.
The rigors of a month to pack and relocate thousands of miles away have left me easily fatigued the last couple days. Next post I’ll hopefully be able to share some pictures!
Imagine living 20 minutes away from here:
Imagine sitting one sunny afternoon on a sandy beach and watching the windsurfers play in the dancing waves:
Imagine feeling the spray misting from this meeting of rock and wave, blown by a sea breeze across your face:
As I sit here and imagine all this I begin to feel my eyes tear up with overwhelming emotion because for me this will be my reality in four weeks.
There is no doubt I am currently living a rare and beautiful moment in my life; when it feels like the heavens are shifting the world around me in order to lay a wondrous path at my feet.
My time is now.
My time is here.
Together, Jeremy and I are seizing this moment and riding the wave of change out from our tent and into a new life filled with sunshine.
These events are nothing short of miraculous and I thank the spiritual path I follow for guiding me here.
It’s another sunny day here in the Pacific Northwest. Starting into the best time of year – not too cold, not too many bugs, and a few more sunny days. It only lasts about a month, usually most of April though this year it is late.
Life has been moving quickly for us the last few weeks. It seemed a slow, sluggish mire we had fallen into over the winter was going to plague us all spring. Then one morning someone turned the “LIFE” switch from ‘off’ over to ‘on’ and life began to take form around us.
It’s odd to say life started when obviously I’m still breathing and getting into mischief. However there is a difference between being alive and living.
This last 18 months I have found myself learning to live again and growing beyond my physical boundaries. Then the late snows in February and March crashed our health; it is very physically and mentally taxing to live in a tent during frequent snows. My world narrowed again to survival – just getting by for another week, another month, waiting to feel less awful. Thankfully an easy allergy season helped and in April we started to move past survival and back into living again.
As I am happily remembering, there is also a difference between living and thriving.
Two weeks ago everything changed in 24 hours. Living became Thriving. I think the last time we found ourselves thriving was in 2005. Before that… 2001, during the few months before life took a nose dive into the world of chronic CFS/MCS.
It’s been a long, hard road we walk in this life of illness.
The big news going along with this change is that we finally will have the means to find indoor housing. Yup, this couple in the woods will one day soon become homeless no more.
I find the prospect both terrifying and exhilarating at the same time.
Where will we go? What sort of place will we rent? I honestly don’t know, though we are planning on answering those questions this summer. With a bit of luck, we’ll be indoors by November; we’ve had enough of living outside during Winter.
Times like these it is hard not to jump into the first opportunity that comes along. Our health concerns and the restrictions it places on housing means we must move slowly to ensure a safe living situation is found.
It also means we opted not to see the naturopath last week. As we are not certain to be staying in the local area, we didn’t want to establish care with a new doctor (a costly endeavor) and then repeat the process in another few months. However, we have followed up on a considerable amount of blood work through Dr. Buscher and will know the results in a few weeks.
Where to live when the world has suddenly opened itself up to you once more?
How to get there and more importantly, how to find safe housing?
What type of change will all this have on our health?
I am looking forwards to finding the answers to these and other questions, which swirl around in my waking and dreaming thoughts.
Much time has passed since my last post. I hoped for inspiration to strike and provide a brilliant return post to share – but alas the brainfog continues to shroud my muse.
My hands have healed well. We made it through several weeks of on/off snow, but then crashed and are still recovering. The majority of spring allergies never hit this year as the snow changed up pollinating schedules for the alders above us. Western Washington is still having more rainfall than normal – and lately colder temperatures too.
It has been a very long time since I felt warm sunshine and I miss its tender kiss upon my face.
All in all – survived another winter. Hooray!
I have come out of this winter with a new plan of action. We will be seeing a local naturopath on May 5th and setting up medical treatment through her. The annual trek to see Dr. Buscher will not be happening this year. The stress and body strain from weeks of snow took a lot out of us. We simply don’t have the stamina to travel two hours away to see our doctor.
Fingers crossed we hit the right naturopath first try. I spoke briefly with her and have hope she will be a good fit for us. At the least, I don’t think we are walking into the nightmare situation almost every CFS or MCS patient has experienced – the doctor who doesn’t believe our illnesses are real.
Happy Spring Everyone!
I’ve had Irony on my mind much of the last month. Less than a week after my last post on healing, I injured my dominant hand. Now several weeks later I am still not recovered and have had troubles with stress injury to my other hand as it tried to pick up the slack.
I have wondered at times – just how does a person end up homeless for 9 years with strange illness? By a random chain of events that seem ludicrous when looked at fully, but which have a large amount of irony to them.
And so, Sundog Tales will be continuing to be on hold for a time as my injuries heal enough for me to type without strain.
Happy Spring to all!
With the holidays upon us, seemed a good time to share our recipe for Paleo Pancakes. These are a bit different than many similar recipes online as we designed them to be high density protein with a good dose of veggies – basically, a balanced paleo meal for times without the ability to cook. Turned out, they are tasty anytime!
Better yet – they taste a bit like cookies!
They are a sugar free, gluten free, organic, ready to go meal.
I’m sure the hemp powder we use can be substituted for other nut flours, we just needed the big protein gains during cold times without cooking.
Paleo Cookie Pancakes:
1 cup mashed squash
1/2 cup hemp powder
1/2 cup walnut flour
1/2 cup coconut milk
Lots of cinnamon (to taste)
1 tbl ginger powder
1/2 tsp salt, or to taste
Mix the hemp and walnut flour with the coconut milk. Mix in the mashed squash. Add eggs and mix well. Add spices or substitute for pumpkin pie spice.
It should have the consistency of thick pancake batter. Can add a few chopped nuts or berries to the batter for texture and bursts of flavor.
Scoop 1/4 cup of mixture onto a hot skillet or griddle, use plenty of butter or coconut oil to prevent sticking. Cook on a low heat, they burn a little easier than other pancakes.
Flip each pancake when the bottom side firms up, like normal pancakes. Cook some more until done!
These tend to be thin, but fluffy due to the egg content. Two pancakes each makes a filling meal for us. I did not write down how many the recipe makes, but its around 9-12 cakes.
We usually eat these plain, but for special occasions (like birthdays) we’ll put a little vanilla ice cream on top. Wow they are good!
It would be easy to substitute many of the ingredients. The squash helps balance the acidic nut flours, helps provide carbohydrates, and keeps the pancakes moist. Bananas, pumpkin, yams, etc would all work well in its place. There are different types of nut flours, you can experiment with finding the one that suits your taste buds the most.
Enjoy and Happy Holidays!
I had intended to post back here more frequently, but my health has been up and down, especially the last few weeks.
We have gotten our winter preparations well under way. October saw us finish changing out the leaky tarps over our tent – a project encompassing two years while letting the new tarps off gas. There has been a great deal of catching up on other small projects around camp. Mostly projects that were unable to be done during our steep decline in health over the last year.
October also saw the end to my six month long sinus infection. It took a combination of antibiotic and antifungal treatment simultaneously, along with a few other additions to help with sinus drainage. I saw an initial surge in energy after I was done with treatment, but this has ebbed somewhat as other influences have sapped my reserves.
A majority of our state medical coverage is ending on December 31st this year. This has changed some of our plans for winter prep as we have had to fit in dental appointments while we still can. The good news is that cavities I had a few years ago have healed themselves. For more information on remineralizing your teeth, a good start would be an article by Stephan Guyenet at Whole Health Source called, “Reversing Tooth Decay.”
Our main struggle right now is with different viruses making homes in us. It feels like each week sees us with a new cold or flu bug. This could be a good thing if it is caused by our bodies waking up to the viruses it is host for. Or it could be a bad thing as our immune system is too weak to fight any of them off. Only time will tell the story.
I do have to wonder how much of our slump the last several weeks was caused by too much birthday fun. With both mine and Jeremy’s birthday’s falling less than two weeks apart, it can get particularly festive around here. It could be that too much ice cream lead to another Candida yeast overgrowth in our guts. Having cut all sugars for three weeks is helping lower many of the symptoms I would attribute to this possibility.
The weather has suddenly shifted from a warm Indian summer into a cold Fall. At its coldest point last night, it was the same temperature as you would find in your refrigerator. Come December, we will be living in your freezer – next to the ice cream perhaps!
I am looking forwards to the colder weather, because it will kill off the molds that have been plaguing me since spring. On the other hand, it also brings smoke from chimneys and wood stoves that is aggravating our asthma and making breathing more difficult at times.
It is a rollercoaster time for us right now, each up comes with a down shortly after. I am thankful to have any up swings at all, as this was not happening most of the last year. With some luck and a good amount of hope, we will see next year bringing more ups than downs again.
It can be useful to minimize wasted time when paying out of pocket for a specialist visit, having to travel for the appointment, or not being well enough to make multiple trips to your physician. Over the years I have learned a few tricks to help us get the most we can out of our in person visits with our MCS/CFS specialist.
Here is how I maximize my visits and I hope this helps you receive the care you deserve at your next appointment.
* Come prepared. Bring a clearly written or typed list of questions, changes in symptoms, and what you want to accomplish in this appointment.
* Bring an updated copy of all medications and supplements you are taking for your file records. Should your doctor need to write a new prescription or look for problems with your medication, this will also makes it easier for them to know what you are currently on without having to flip through multiple pages of your file.
* If you’ve taken a test for a specific condition, do a little research on it before walking into the appointment. Find out the general symptoms, treatment, etc of it prior to seeing your doctor. A lot of time can be saved in a visit if you do not need an in depth explanation of things should you test positive for x condition. It allows more time to decide treatment options instead of covering the rudimentary physiology of the problem.
* Arrive early. This makes sure you are there for every minute if they happen to be running on time and allows you an opportunity to collect your thoughts prior to seeing the doctor.
* Bring a clearly printed or typed list of all known prescriptions you will need written this trip. Leave room to add to the bottom of it while in the appointment should a new script be needed that is not written up on the spot. Some doctors even prefer to write the scripts out of the appointment when they have time to look up dosages and in general don’t feel rushed. This can save you several minutes depending on how many scripts you need.
* Be prepared to take notes. This will help keep you on track and give you something to refer back to a few hours/days later if you have forgotten a dosage or treatment change.
* Be as proactive as possible about keeping on track. Sometimes doctors find a story they want to share or enjoy; it is up to you to steer them back to the next topic at hand as gently as possible so as not to seem rude with your interruption.
* Try to limit yourself to keeping on track as well. It can be easy to spend a lot of time sharing symptoms or concerns with your doctor if they are sympathetic. It is just as important to keep yourself focused on the meeting as it is to keep your doctor focused.
* Follow the list of tasks you made and make sure to hit each one. It sounds redundant, but it is amazingly easy to miss asking that one question which will keep you awake all night when you remember it again. There may be a lot of information exchanged during your meeting and it can be hard for those of us cognitively impaired to keep up with all the changes. A checked off list helps greatly with this problem.
* If your doctor says something that you do not understand, make sure to ask for clarification. This can save having to go back for a second trip later or incorrect treatment occurring because you did not understand clearly what was being said at the time. Doctors do make mistakes sometimes and knowing exactly what they are talking about is a great way to limit these mistakes.
Yesterday was this year’s trip to see our MCS/CFS specialist who’s office is about two hours away. (For last year’s trip see Back from the Wizard) The weather couldn’t have been better as it was one of our warmer days and lots of sunshine. A good day for a road trip!
A month ago Jeremy and I had our usual 10 vials of blood drawn each. It was a bit rougher trip than normal as we had forgotten to fast prior to the blood draw and opted to go home and wait another six hours before heading back in for the draw.
That day was a highlight of the blood sugar improvements we have seen since starting a paleo diet as eight hours total without a meal was rough, but very doable. A year ago this would not have even been considered possible.
Yesterday we received the results of those blood tests, covered our next stage of treatment, addressed my still lingering sinus infection, and tweaked a few things with our current treatment.
This is a very long, detailed post. Listed below is the quick version and all test results are at Test Results – Jeremy and Test Results – Lisa (or just go to top of my blog page for the tabs). Last year’s test results will be added there too for anyone who wants to compare them to this year.
Quick list of all changes:
– New antibiotic for sinus infection (possibly some acetylcysteine to nebulize too).
– Increase our b12, methylfolate, and milk thistle (detox herb).
– Start supplementing Vitamin K2.
– Keep Vitamin D the same for next six months and then retest.
– Take MTHF test.
– Jeremy increases his testosterone 50-100% and taurine.
– I begin supplementing thyroid, glycine, arginine, and methionine.
With a good amount of luck and hope, we should be seeing some improvements in our health soon. I only wish there was more to follow up with on Jeremy right now, but possibly time will shine more light on what needs healing for him too.
First thing we talked about, my recurring sinus infection. A couple weeks ago I noticed it coming back and restarted the same antibiotic as treatment. After two weeks, it briefly saw some improvement but is beginning to slowly worsen again. I will be starting a different antibiotic (also nebulized) early next week when it arrives in the mail from a compounding pharmacy in California. It should be noted that the first course of antibiotic treatment likely would have fully taken care of the sinus infection but some misread instructions led to it not being used properly. I suspect this new antibiotic will work very well.
We discussed how the treatments outlined at our last office visit had gone. He had suggested last October that we try a product to help promote detoxing but it had proved to strong even at 1/20th of a dose. Because of this, we are going to be trying an increase in an herb that has been helping us to detox instead.
Last year the plan had been to try the detox product and if it did not help much, then we would do a test panel which would help pinpoint where we are having trouble detoxing. However after looking over the current supplements we are using and our lifestyle (high avoidance of toxic triggers and really good diet) we all agreed that running such a panel would not likely require us to change much with our healing program even were it to be very informative.
I’ve mentioned before how much I love my doctor – him being ok with not running a test that would be out of pocket costs for us simply because he recognizes it would only give information but not change our treatment program is another big reason he’s such a great physician. I have not heard of very many doctors who are open enough to the needs of the patient to recognize saving money as one of those big needs.
We will be running an insurance covered test of our MTHF process to see if it is working properly. This is the process by which methylfolate is used in the body for many important functions and if it is wonky can cause detox problems as well as a host of other symptoms. Meanwhile, we will slowly begin to increase our methylfolate supplementation.
Hydroxocobalamin shots (B12)
Starting with our b12 shot yesterday, we will be increasing each one by 50% – from 10,000 mcg each shot up to 15,000. I think I noticed a very large difference with the increase last night. A lot of energy after our trip instead of being totally wrung out as expected. It will take a few shots to see how well this works, but I suspect it is a very good change.
One new blood test this time was to check our osteocalcin levels, aka Vitamin K. With the amount of Vitamin D we are supplementing with it is important to have enough Vitamin K to help ensure calcium is utilized properly in the body and not deposited in muscle or other tissues. Good catch by Dr. Buscher with this test as our results show we both are in need of supplementing Vitamin K. This was a little surprising actually as there should be ample K in our diet due to the amount of greens we eat which is why most doctors would not have bothered to test it. I tested below minimum and Jeremy right at minimum levels.
We retested our Vitamin D levels again this year. They have both come up by a large amount to land us in the mid-normal range instead of the very low (Jeremy) to below minimum (me) that they tested at last year. Even so, we will still be on our current dosage of Vitamin D until they raise up into the range Dr. Buscher has found to be more optimal. This will be retested in six months as it is entering a more fine tuning area of supplementing.
Another test of our hormones this year showed some positive improvements for both of us. Jeremy is still too low on testosterone but he did see a 30% increase in levels. He will be having his supplemental testosterone raised to help further. Its a sticky situation to take supplemental testosterone as its one of those things you will be on the rest of your life once you start it. I did bring this up as a concern with increasing his dosage, but we all agreed that with how low his is, the time for options to raise it without medication have passed.
I saw positive improvement for my progesterone levels which had been fairly low last year. Though I’m now mid-range and could conceivably cease supplementing with progesterone drops, I’ll be continuing on them as there is still signs that they are needed.
As a side note – though we have been supplementing with hormones for the last 11 months, I also think our diet change has contributed to the improvements. Certainly removing phytoestrogens from the diet (soy) would be of tremendous help when trying to rebalance hormones.
Thyroid and DHEA
Next up is our thyroid and DHEA panels. Jeremy saw little or no change with both of these, however for me they both decreased over the last year. While last year there was the option of not addressing the thyroid because it was in the low normal range, this year it was pretty much only a question of what I would be supplementing it with. I had dropped another 27 points this year which lands me at 247. The reference range is 230-420 and very often people experience symptoms of low thyroid (hypothyroidism) when in the low normal range. I’d say I am now low, low normal.
When I was 15, I became ill and the doctor could not find the cause. After a specialist ran a lot of tests (enough blood drawn as to make me nearly pass out), he decided to take a chance and treat me for hypothyroidism despite me being in the low normal range. It worked almost immediately. A few years later I was able to cease thyroid medication but always kept in mind that I’m one of those who can have devastating symptoms as a low normal.
Last year I tried supplementing with Synthroid to see if it helped some of my symptoms but it had a huge, not good reaction in me. This year I will be trying the natural thyroid supplement, Armour, as it has recently come back on the market. It has a lot of negative reviews for it with the new formulation, but I have read many are able to crush it and add a bit of sugar/honey to make it fully absorbable again, thereby alleviating the problems with the new formulation.
My lowering of DHEA will be addressed after we tackle the thyroid and anything that arises from trying to address it.
Amino Acids Profile
Lastly I’ll cover our biggest new test of the year – an amino acid profile that was all out of pocket expense. We will see what happens by treating the things shown low on this profile, but I already feel the money was well spent.
This is the first time in 9 years of illness that Jeremy and I had significantly different test results. Granted my lowering thyroid does fall into this category as well, but it is not as dramatic a difference as what we saw on the amino acid profile.
It has been a nightmare to try and convince new doctors or officials we have had to deal with, that two people can both have CFS/MCS and similar test results. The amount of skepticism and outright disbelief that we are ill but instead just faking has been enormous. To finally have differencing test results, while meaning only one of us is good, it still brings much satisfaction to my heart to be able to point to something being different.
It is also interesting from the perspective of wondering – what finally changed after nine years to give us different results? Maybe we simply weren’t looking in the right places all that time…
This last profile measured the quantity of amino acids in our blood at a fasted state. It is absolutely amazing the impact amino acids have in bodily processes. Many amino acids can be made by the body or its organisms (bacteria in our gut), but some we can only obtain through outside sources – namely food.
The paleo diet helps with this because meat is a very good source for these essential aminos which we only get through food. Having low amino acids can be a sign of poor digestion, poor diet, or areas where the body is having trouble converting from one thing to another.
Jeremy and I tested nearly opposite each other on almost this entire test. As I said, this is the first time we have ever showed almost any difference, let alone such a dramatic difference in a test.
To go over each test thoroughly would be far too much information to add to this already long post, but there is now a tab of all the test results for anyone who wants to see more detail.
In a nutshell, Jeremy has some unbalanced ratios of some of his aminos but the general levels of everything except taurine are pretty good. Oddly, taurine is the only amino acid we were currently supplementing which makes it a little surprising to find his levels low.
On the other hand, my levels of almost everything were very low. This is also surprising given how much protein I eat every day. It is likely part of the problem has to do with poor digestion or absorption from my intestines, as well as problems detoxing. The MTHF panel we are doing next should help provide some answers to some of my low amino levels.
Of note, my “Urea Cycle and Ammonia Detoxification” (numbers 31-36 on test results) are all pretty much bottomed out. This could certainly be cause for some of my continual brain fog along with some other symptoms. Dr. Buscher wanted to see the results of the MTHF panel before treating this area due to the influence an imbalanced methylfolate process could have on this detox system.
To sum up this test, Jeremy will be increasing his taurine supplementation. I will begin supplementing with glycine, arginine, and methionine to start and more can be added later. Dr. Buscher will be researching what impact our imbalanced ratios of aminios are having on us and if they need to be treated, I think our test results threw him a bit of a curve ball on this aspect, especially Jeremy’s. Lastly, we will reevaluate these tests again in light of the findings of the MTHF panel we will be doing sometime soon.
Lots of changes and lots of places treatment can lead. We never brought up XMRV (soon possibly renamed to HGRV) or Dr. Buscher’s impressions of its potential to be a key role in CFS. As you can see, there is a lot of work to be done in stabilizing some key body systems before we can even consider looking into what for now are still experimental therapies.
My life has been led by far too much fear.
If you had asked me ten years ago while I was still healthy, I would have been very sure that fear played little role in the direction life was taking.
I would have been wrong.
Over the last several months I have been thinking about fear’s role in my life. Its not just the fear I felt every time I stepped out into the darkness at night alone the last eight years, but also the fear that has unknowingly held me back from jumping in and living life instead of life living me.
I see fear in my choice to stop following veterinary medicine after a negative experience while observing a surgery on a large dog in my 2nd year of college.
There was a great deal of hidden fear that caused me to be content with stoner friends who rarely did anything but sit around and have a good time.
In fact, an amazing amount of my life decisions have been chosen based on an unknown fear of failure. Much easier to set expectations of myself lower so that I can be the superstar I want to perceive instead of merely being average at something I put a lot of effort into.
I have done a lot of really great and brave things in life, but there was so much more I would have done had fear not gotten in my way. I wish I had known this years ago, before illness took away huge chunks of my ability to live and follow my dreams.
After becoming ill, my fear took on a whole new dimension as there was suddenly a tremendous amount of things to be afraid of. Overnight I had to become hyper vigilant of toxic exposures which could severely impact my quickly diminishing health.
These could be found hiding in plain sight on any stranger I passed on the street, in any building I entered, any street I walked down, a shift in the breeze, a box in the mail, and many other places. Perfumes, fabric softener, car exhaust, fresh paint, solvents, pesticides… so many things and more to be wary of.
Suddenly everything I knew about being safe in the world was turned completely upside down and every where I turned was another dangerous situation that had to be avoided or minimized at all costs.
My world had become a battlefield in a hostile and foreign land.
Even at home I was not necessarily safe. Living in a tent with nylon walls does not offer much protection against anything. I found myself fearing mountain lions, bears, trees falling on our tent in a wind storm, heavy snow storms, power outages, people not respecting our privacy and strolling into camp at their leisure, shifts in wind bringing toxic fumes from neighbors into our tent, neighbor dogs rooting through our stuff, and raccoons doing the same. Worse yet was all of the above, but in the dark where I could not see it coming.
This fear had made me unable to leave the comfort of our lighted tent at night without Jeremy nearby, even for a simple trip to our ‘facilities’ because it meant being completely enclosed in the dark with nothing but my flashlight to see by. I used to go backpacking alone overnight and now I could not even tolerate 1 minute in the dark by myself without a panic attack overwhelming me.
Then a few months ago something began to change.
At first it changed so slowly I didn’t even see a difference until last month. I was up at our refrigerator area (about 70 ft from the tent) and using my sinus medication. It takes about 20 minutes for the whole process and it was quickly getting dark. Oddly, this hardly bothered me at all. I stayed the whole time and then calmly walked back to the tent. First time in eight years I have been able to do anything like this.
Over the last few weeks I have even gotten to the point where I have wanted a little quiet “me time” some evenings. I walk up to the chair we have by the fridge, have a seat, and just relax for a while – after dark. Critters rustling around in the bushes, breeze making strange noises in the trees – none of it freaks me out anymore.
When I do get spooked a bit, it is a pretty simple matter to calm my mind and body back down to a place where I can continue to enjoy the time spent alone, in the dark with only my flashlight. I have actually turned it off a couple of times. Only briefly off, but I still had the courage to do it.
I am seeing this same shift away from fear in many aspects of my life and how I look at situations. Such as making a very important and empowering choice to stop fighting my situation and working with it instead.
To fully explain what brought about this change would take at least one more article, very possibly more. In summary, I have been utilizing alternative mind/body healing practices for nearly a year, specifically EFT (Emotional Freedom Technique) and Reiki. It is these practices to which I attribute many of these massive changes.
I have not spoken of these things here in my blog because of my fear that at even merely mentioning I am finding healing in alternative means, it would damage my credibility and the degree my chronic illness is taken seriously.
Having one’s integrity and mental soundness questioned goes hand in hand with a diagnosis of Multiple Chemical Sensitivity and Chronic Fatigue Syndrome. I was reticent to add to that by opening the door for further skepticism with alternative therapies. It appears that in writing this article, I am again seeing the same shift from a fear led life to one I lead on my own.
Too much of my life has been governed by fear. That chapter is now closing and it is time for me to write the next chapter in my own words.