I have enjoyed this chakra meditation video very much over the last few months. It has a nice grounding effect and is quite relaxing.
Each day Jeremy and I do some combination of between 2-4 meditations spread throughout the day. It is part of the Gupta Amygdala Retraining Technique we have been doing and it helps immensely. Though the program starts you off with guided meditations of their own and cd’s to help you get started, we’ve taken it beyond those to now encompassing other meditation styles too.
Sometimes we skip the afternoon meditation in favor of a walk in the park or around our semi-rural neighborhood. This also seems just as relaxing and really depends on the day as to which we do.
Over the last several months of this program I have had a lot of time to think. Originally I was unsure as to when I would share with my reading community that I was doing the Gupta program, as it is a bit alternative and honestly, I wasn’t ready to face people judging me or how I choose to heal myself. Sad that even with all I’ve been through from these illnesses, there are those people out there who will harshly judge anyone who dares to break their own boundaries by becoming well.
Unfortunately, I did indeed face some negative criticism and a fair bit of what I felt to be an irrational anger towards me for not sharing on my blog all the intimate and private details of my life. As though somehow by denying this person those details, I am not only standing in the way of their own healing, but outright doing them harm.
I hate to admit it, but even despite finding their position to have been in the minority it did take away some of my enthusiasm for sharing this healing journey with you, my readers and friends. At this same time in life, I found myself to be going into a bit of a downturn in health because of our cat, Tashi, waking us multiple times a night and causing enormous difficulties. I love that cat, but she knocked down a considerable part of my health for the better part of four full months. All in all, as you may have noticed, I haven’t been posting very much for sometime now.
But that’s about to change… just not here.
Now I’m bouncing back quickly, more quickly than I had even dared to hope! With this gigantic boost in health is also the same boost in motivation to get a move on life. Jeremy and I are going to see about moving to Colorado, sooner rather than later, and start the process of getting back to school through the work training programs available to us.
Jeremy and I started a new blog for us to share, A Thousand Miles, where we will detail out more of our adventures while trying to find enough money to make the move. Being on Social Security Disability and food stamps doesn’t leave much money to try and save up for a big expense, and being on an island means big expense if you want to move off it. Plane fare alone starts around $1200! If we actually want to take with us anything besides carry-on luggage, such as shipping our computers to Colorado or blankets, well the costs skyrocket.
Life is full of challenges and as any who’ve read my blog here for very long knows, we take each challenge and overcome them. It’s all just a matter of time.
I’ve been down and out of life for the last couple of months, mostly because Tashi has been waking us up multiple times a night since mid-February. She’s a wonderful cat in all other ways, but sadly she has trouble with being afraid of things in our home environment which we have zero control over.
The main trigger for her nightly wake-ups seems to be our neighbor’s voice coming in through our windows at all hours of the night. I don’t blame the neighbor, she works until midnight and we knew that before moving in. Everything is at a normal speaking volume, she’s just awake much of the night. We’ve worked far too many lousy jobs that require that sort of shift to complain about someone else who’s working that shift and simply unwinding at night by chatting with their boyfriend.
And so we’ve found Tashi a new home. It’s a good home and she will be moving there at the end of this week. There are 3 other cats and a dog, along with some nice folks. A much bigger home, more windows for her, and most importantly – neighbors who’s windows are much further than 5 feet away.
I’ll be very sorry to see her go. I haven’t posted much about her here, but she’s been a real highlight in our lives these last 6 months. Were it not for this constant lack of sleep and what it’s done to our health (a full stop on our healing progress for CFS and some regression), it would be a great joy to keep her with us.
However it seems to have come down to staying tired and feeling useless in life or keeping a wonderful cat – oddly it was a hard choice. But then being tired and feeling useless is actually what most of life felt like since becoming ill in 2001 – it’s only recently begun to change at the end of last year so I’m not as familiar with what that feels like anymore.
What I do remember of December (2012) and January (2013) was a great deal of delight in feeling my energy coming up, actually being able to see and feel life returning to a more normal picture, and being happy that my existence isn’t dictated solely by feelings of Chronic Fatigue Syndrome and Multiple Chemical Sensitives. Thankfully, I’m still seeing MCS improvements, even just yesterday going into a store (Costco) that we had to avoid in the past like the plague due to all the odors and such. Now it was just as I remembered it from when I went as a kid with my mom on shopping day – everything smelled just the same, not overwhelming or frightening. Life with MCS really is coming to a close and it’s both a brilliant and wonderful thing.
I know this can happen with CFS too and unfortunately its all too clear that right now that means as best of sleep as we can manage so our nervous systems can calm down instead of being jarred awake several times a night. Truly, Tashi is going to a great home with one of the worker’s at the cat sanctuary we adopted her from – actually the woman who helped us pick her out. The woman had always wanted Tashi, seemed a little sad to see her go, but had not wanted to make the commitment before. She’s had a change of mind now that she’s seen just how wonderful and loving Tashi is as a house cat – they’ll do well together I think.
Hopefully in a few weeks time Jeremy and I will be seeing more energy again. Neither of us can hardly wait for the adventures on our horizon and have lots of motivation to make them happen. Brighter days should be coming our way, even if they are a little more lonely without my dear Tashi.
It seems I have finally accomplished another dream today. For the last year I have wanted to open my own etsy store just as Jeremy had done for his steampunk jewelry business. I’ve seen him excitedly checking his email and finding that he’s sold something, it looked like a lot of fun! Problem was, I didn’t know what I wanted to sell…
Then last March I bought a nice DSLR camera and started taking pictures. It seemed pretty obvious what type of etsy store I would be opening up, it was now just a matter of time. In less than a week we found out had to move out of our apartment and the rental search began. As mentioned in previous posts, life with moderate MCS can be difficult – having to find safe housing that didn’t make us ill only made this more so.
As the months went by and we still were unsuccessful at our rental search, my ability for photography greatly declined as every bit of energy went into finding us a safe place to live. I would take my camera out for a trip perhaps once or twice a month, but anything more was beyond my physical abilities.
Then we moved! This is a wonderful apartment we have lived in these past 3 months and I often find myself thinking about how much I love it here. My energy came up a bit and again I began my day dreams of an etsy store of my own.
My last post told of winning a prize in a photography contest, it was the first step I took towards my store. Before preparing that photo for the contest, I still hadn’t readied a single photograph for printing. Many show how much I have left to learn about controlling my camera and setting up the shot – which means most photos need a lot of post processing work in Lightroom. However I didn’t let this deter me from my goal of starting up a store, just means I have opened it with less photographs than I had originally planned.
Which brings me to my grand opening of UNTAMED Photography! 😀
I hope to add to my store over the next few weeks and am very happy to have finally gotten through the steep learning curve to finish opening today. I hope you all enjoy the couple of pictures I have put up there already and I will be writing about new ones as they are listed.
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.
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!
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!
What is Healing? I have pondered this question many times.
Recently, I have begun to see signs of deep physical healing at long last, but why? What has changed?
I now sleep 12-15 hours a day. That’s a 10-12 hour night and one or two naps during the day. Until last November, I could sleep no more than 9 hours a night and never napped. How can this be good?
As well, I have seen signs my digestive system is healing. The same amount of digestive enzymes I took two months ago is now too strong. I have reduced them by 25%. This means for the first time in 10 years my body is producing more stomach acid instead of less. Until you’ve suffered from long term digestive problems it is hard to understand how large of an impact quality digestion (or lack of it) can have on your entire health. This is actually an impressive improvement for me.
But what does digestion have to do with me sleeping over half the day away?
There are a lot of mumbo jumbo scientific words I could toss around right now to describe what essentially comes down to a simple concept. Inside each one of us is an ‘on/off’ switch. It toggles between the flight/fight response and being restful/calm. This is part of the autonomic nervous system.
In CFS and MCS, evidence shows that some of the cause behind these conditions is likely the flight/fight response being stuck turned on. This means the body is always ready for a lion to try and eat you so it only worries about keeping you alive another day, not what will happen after that. To do this, it supercharges some systems – like making you run faster, but this has a price. It has to take away from other systems – like digestion and immune functions, because they won’t matter if the lion eats you.
In other words – sleeping more and digesting better means my ‘on/off’ switch isn’t stuck on flight/fight anymore. It means my body is finally able to put energy toward healing instead of running away.
But why has this happened now? What is so different today compared to the last 10 years?
I think this question has a few answers. There is the obvious one – I’m taking herbs and vitamin supplements that have been slowly tailored to my specific needs and it took 10 years to figure those needs out. We are also spending a considerably larger sum of money on those supplements now compared to when we were trying to build our house and pinching pennies from every place we could.
But that answer is boring. The intriguing answer is much harder to define because it isn’t a pill that is popped or anything which can be seen with the eye. Nor is it the excellent diet we’ve been eating since going paleo. Though paleo is making good progress in lowering systemic body inflammation, providing materials for building muscles, strengthening joints and ligaments, and it just plain tastes better!
No, I think the main answer lies in the emotional and spiritual healing I have been discovering for almost a year and a half. I have been practicing EFT, reiki, qigong, meditation, and learning to listen with my heart as well as my head for guidance. Gradually, these techniques have been re-balancing my turbulent body, mind, and spiritual energies.
I’ve been releasing trapped emotional energy by letting go of old fears; learning to fully let go of painful past events and forgive those who caused them, including myself; and in general finding an inner calmness I have rarely known before now. It is a lot like time travel, change the right thing in the past and the ripples have an impact on the future. Although I can not go back in time and change what happened, I can change how my body reacts to those memories. Over time this is positively changing how I react to similar events when they occur.
Stagnant body energy is balanced through meditation and movements which directs my body’s yin and yang energy into healing pathways. This energy flows through each of us and everything around us – plants, trees, earth, sky…
Basically, I’m learning to harness the power of the Force!
I suspect this is the key to my flight/fight response beginning to turn off at last, thus allowing physical healing. No matter how many pills I took to support and heal my body, it could do little good if my body’s own healing systems had been turned off by a wonky ‘on/off’ switch.
As I find an ever deepening sense of peace in life, my body is waking from its shadowy slumber into the new day of better health.
What is healing? I still am not fully sure, but I do know there is no simple answer. The human body and mind are a mysterious place, no less grand than the mysteries of the Universe itself.
Some have a path we are meant to follow. I think great sickness and tragedy has led me to mine and though it sounds odd, I am grateful.
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.
In life we have choices. Choosing gives us power. When we are thrust into a situation in which we have very little choice, it can leave one feeling very powerless. Thus has been my situation for the many years I’ve been homeless in this very tent.
For years we have tried to find a way out of our situation and seem to have only dug ourselves in deeper and deeper each time.
We tried to build a house – now we are in debt we can barely cover due to our increasing medical expenses, can not finish building because the majority of the money ran out years ago, and are now left with a half finished structure too toxic for us to live in.
Three years ago we started an intensive regime of supplements which did show much promise in healing us – then a misstep with adding just the wrong type of a much needed nutrient (b12) and all our hard regained health crashed around us in a matter of a few weeks. This was the instigator of the crash from which we are only just starting to pull out of finally, a full year later.
Stuck in a difficult situation, all the motivation in the world to pull yourself out of it yet chained to a body incapable of hardly even moving at times for the most basic of needs. Its enough to drive a person nuts.
While these last few months have passed by and our health declined further and further, all thoughts turned to escape from this situation, no matter the cost. I started rooting through all the ads for rental housing, day after day, looking for the “perfect” place for all our needs – super cheap, hardwood or tile floors, no fresh paint or remodeling, no pest control, no mold, no super close neighbors, no gas appliances, and a landlord willing to work with our MCS problems … in other words, looking for the near impossible.
Even assuming we found a place that matched everything, it would still have the possibility of not being right for us depending on the lifestyle of the last few tenants. If they had been incense burners, smokers, strong laundry soap users, heavy perfume wearers, or any number of other highly toxic aromatic things in daily life, then that too would rule a place out.
Yeah.. darn near impossible at this time.
And then a few weeks ago, Jeremy and I came upon a Choice.
We could keep going crazy looking for an exit to the cage we found ourselves in these last eight years or find within ourselves the key to dissolving the cage bars surrounding us and finally be free again.
I am not entirely sure how we found the ability to liberate our minds from the cage, thus freeing our souls, but I do know it started with a choice to stay.
All these years I never felt like it was by my own choosing to be here in a tent. It was always circumstance that forced my hand, left me no other options. Left me powerless.
As simple as it seems, we decided that barring unforeseen changes we would stay here for the next solid year, work very diligently and without deviation from a healing plan we wrote out that day, and most importantly – we made a choice to stop pacing the confines of the cage but to instead embrace the life around us as our own.
And with that we were freed.
A couple weeks ago I injured my left wrist while slipping on one of our dirt paths around here. They get a lot of loose gravel and debris on them when the weather turns warm and dry after months of rain, all the mud dries leaving stuff loose under foot.
A few re-injuries of the same wrist while trying to let it heal and here I am a couple weeks later still only able to type with my right hand. I am on the mend and hope to have the use of two hands in life again within a couple weeks at most.
Both Jeremy and I have seen over the years that one of our persistent symptoms, indeed one of our very first even, is a decreased healing speed from injuries. Tissues knit together slower, muscles and tendons take longer to come back up to strength, and easily being re-injured is fairly common even while being very vigilant and careful.
I am greatly looking forward to being able to write more here as it has been an interesting couple of weeks!
The darkness of my persistent sinus infections is gradually being lifted as I continue to use my nebulized medicines. My antibiotic course ended four days ago and I have now started the anti-fungal. Overall, I feel much better and more energetic from being rid of the bacteria infection. I am hoping to see more improvement in a week or two as the fungal infection is also destroyed.
Nearly another month and still not doing well.
Jeremy is slowly (very slowly) seeing improvements with the twice daily nasal rinsing using oregano oil, salt, baking soda, and water. The glutathione nasal spray is also helping to heal his sinus infection. Its very slow improvement, a little more energy some days and a small bit more functional, but any improvement is good.
I too saw some improvement off and on this last month but then last week started to take a quick turn for the worse again. My small bits of energy have all but disappeared, daily sinus headaches again, lots of full body nerve pain, low grade fevers, sinuses swelling more each day, and a few other returning symptoms.
Called the doctor again yesterday – we agreed its time for antibiotics. Some who read this blog may wonder why we waited on them instead of going the more normal route here in America and jumping right to a 4-6 week antibiotic course.
When popping a pill for treatment, the medication does not go only to the spot needed. Instead it hits the intestinal track where it is then absorbed into the blood stream through the intestinal lining. There are a few problems with this plan when dealing with an infection at a spot of the body which does not receive as much blood flow as for example, the lungs do.
If the infected area does not have a high blood flow then the amount of medicine it receives will be much smaller and healing will be slower because of this. Also with antibiotics, taking them orally means they do a lot of damage to your intestinal flora. The human body is very dependent on the flora and fauna in our digestion tracks to aid in digesting food and helping our immune system keep bad things in check – like candida yeast.
When one takes an antibiotic, its not only killing the problem you take it for but also our cohabitants inside of us – basically going on a killing spree directed at an important part of your immune system while at the same time throwing a kegger party for the nasties.
I am going to be taking a slightly different approach with my antibiotics, a much safer approach considering the location. Instead of taking a pill a few times a day, I will be using a gizmo which turns the specially made antibiotic into a mist and is then breathed in through the nose via a nasal nebulizer. This greatly isolates the area being treated and will keep a vast majority of the medicine right where it is needed – my sinus passages.
It will still be a course of treatment lasting 4 weeks but the impact it will have on my overall health will be minimal compared to the bottle of pills you pick up at the local pharmacy.
In addition to this, I will begin using an antibiotic ointment for my nose tonight and continue this for about five days. As well, when all the antibiotics are done I will start a long treatment of an antifungal also with the nebulizer. This part of the treatment is expected to take a minimum of 4 weeks but very likely a while longer as the fungal part of the infection is much more stubborn than the bacterial.
Sadly, the antibiotic treatment will aid the fungal infection’s growth (just as it would in the gut with candida) by killing the good bacteria in my sinuses along with the bad, and is the reason for the aggressive antifungal use after the antibiotics.
It is very tiring to think I’ve had variations of this infection since very early March and am just starting a new course of treatment promising to last a minimum of two more months.
I suspect my initial sinus infection in March was bacterial and mostly (or even entirely) cleared up via natural methods. Then the mold levels rose dramatically in the environment around me in April when the weather warmed and became very wet, which quickly allowed a mold infection to begin in my still recovering sinuses. Then with enough time and my immune system being very worn out, another bacterial infection was able to take hold in the last couple of weeks while I was successfully treating the fungal/mold infection.
Hopefully hitting these infections hard with these antibiotics and stronger antifungals will do the trick, letting me again start to have more energy and finally feel better.
Had another phone appointment yesterday with Dr. Buscher our CFS/MCS specialist. Seemed time to consult him since Jeremy and I had tried everything we could think of doing on our own but to no avail.
It didn’t take Dr. Buscher long to figure out what is very likely happening to us. This year has seen a particularly wet and warm winter/spring which has mold numbers very high. In people with low health, mold can actually take residence in your sinuses and other parts of the body. This leads to all kinds of trouble.
The molds release toxins and then these toxins are in you. No having to inhale them in a sick building or ways to prevent exposure – its already inside. Add to this a bodily reaction to the mold infection taking root in you and causing your immune system to ramp up – inflammation, swollen glands, low fevers, brain fog, memory problems, greater fatigue than normal, and body aches all abound.
We had a mold sinus infection for several months in 2006 and in comparing symptoms it is nearly exact to what we are going through now.
He has us rinsing our sinuses twice a day with oregano oil very diluted which wowie does it burn. This should pass as the sinus tissue begins to heal with the lessening of the infection.
We will also be starting a nasal glutathione spray soon as I can get it made/shipped from the compounding pharmacy as its not something you’ll find at the local drug store.
Dr. Buscher said we should be having noticeable improvements within 2-3 weeks. Fingers crossed!
Its such a relief to have an avenue of recovery planned.
Words hardly express how frightening and overwhelming it can be to see the fragile strings of your life snapping one by one while you are desperately trying to stop your life from dissolving more each day.