Friday, January 23, 2015

Signs of Spring

I really felt a desperate need for fresh air and sunshine today so I had Don take me over to the wetlands on Sand Hill Road and I was thrilled to see some bluebirds and robins. I got really chilled but seeing the birds and being in the sun made it totally worth it. 

I have a wicked ear ache tonight so I am going to use some mullein and garlic oil and see if that helps. The ringing in both ears tonight is insanely intense. I bought some Honey Gardens  Apitherapy Honey - Wild Chery Bark Syrup today for the cough that has been waking me up at 2:00 AM every night. I also bought some of their Elderberry Syrup. Not sure that either of these are a good idea with the autoimmune stuff but I am so sick of this virus that I will try anything at this point to get rid of it. I bought some zinc lozenges too. 

We were starved afterwards so we stopped at the co-op for lunch and I had chicken soup but realized after I got it that is had red peppers in it (Nightshades). I also had a gluten free scone but forgot to ask if it had dairy in it. Later on hubby was eating cheese and before i could stop myself I reached down and grabbed a hunk. So I'm not sure but these food slips may be what has my ears ringing and aching so badly tonight. Will I ever learn????

Daily Meditation:
Today is day 4 of the mantra meditation I am doing using the chant at this link: Mera Man Loche – Meditation to Heal the Wounds of Love. It is repeated 11 times for 11 days and takes about 55 min. 

For my afternoon meditation yesterday I did this one Beyond Boundaries-Meditation (English Version) It was amazing! Don was in the other room when I did it and even he said it melted him like butter.

Daily Motion:
I did the 1 hour Mera Man Loche meditation while sitting on my large exercise ball at my alter. I rolled, bounced, did the pelvic tilts on it as well as abdominal exercises while chanting. It worked out really well and I really enjoyed combining it with the chanting.

I also went for a slow leisurely walk with my Hubby at the wetlands preserve. 

Corn For the Squirrels & Birds

It is 2:00 in the morning and I am up again coughing. I'm still fighting this stubborn virus so my fatigue and weakness are still very high. I really wish I could get some quality sleep.

My sister came and cleaned my house yesterday to help me out. She has been doing that every week over for the last 3 weeks and it is a huge blessing. While she was here I ate a gluten free biscuit left over from the ones I made the day before (made with Pamela's gluten free baking mix which is rice flour based). By late afternoon my gut was feeling really funky so that might have been why. 

It was warmer yesterday, around 30 degrees I think, and the birds were singing so it felt like a bit of spring was in the air. I wanted to go for a walk but I felt too weak, and everything is coated in ice, so I just stepped outside on the walk and took some photos of the birds and squirrels near the feeder. We purchased some corn cobs for the squirrels hoping it would get them away from the bird feeder. They were so comical to watch fighting over the corn cobs and trying to drag them away.  

 One of our resident Blue Jays chowing down on the corn

A Pine Siskin watching the squirrels below bicker over corn cobs

This squirrel looks like he is praying. Perhaps he's giving thanks for the corn ;-)

 Looking around to see if anyone else has discovered the "Mana" 
that has fallen from heaven

Trying to drag it away, which he eventually did. 

Today is day 4 of the mantra meditation I am doing using the chant at this link: Mera Man Loche – Meditation to Heal the Wounds of Love. It is repeated 11 times for 11 days and takes about 55 min. 

Thursday, January 22, 2015

Buchca Brewin', 23andMe & New Meditation Links

I have been waking up between 2:00 & 3:00 AM with a cough and end up having to get up so I won't keep Don awake. Yesterday I was exhausted again so I slept on and off all day and had to miss the autoimmune/nutritional support group. That bummed me out but I was completely paralyzed by fatigue so I knew driving was not at all an option.

Today is day 3 of my 11 day meditation using the chant at this link: Mera Man Loche – Meditation to Heal the Wounds of Love. It takes about 55 minuets to do it the full 11 times. So far I am finding it very beneficial. I am glad I have the album, "The Nectar of the Name", with this specific mantra combination on it because it makes it so much easier to follow. 
Yesterday I used a mediation from the  Meditation Oasis podcast for my second, afternoon meditation. The have tons of meditations on any subject you can imagine so I subscribed to their podcast. This is a link to the one I used Resting in the Source . I fell asleep about halfway through, it was wonderfully relaxing. For my 3rd and final meditation of the day, after I went to bed, I used a meditation called "Connecting to God" from the Cd called Heart Meditations it was very soothing and I slept well afterwards. 
Homemade Bone Broth
Food has been a disaster the last couple of days because I am too fatigued to cook or even have the forethought to thaw and prep already cooked meats into meals. I did manage to eat some Beef Liver Paté and homemade chicken broth from locally pasture raised  chickens. But I also was desperately craving carbs so I made up a batch of Pamela's Gluten Free biscuits (a no-no on AIP) and ate a couple smeared with that liver paté. It did help the liver go down more easily. 

My 23andMe kit arrived today. I haven't read the instructions yet but am thinking I will have it done and ready to send back out on Monday. Even thought the government is no longer allowing them to send you the health related genetic translations you still get the raw data and there are other sites online where you can upload the health data to have it translated. My hope is that it will give me a better handle on my MTHFR, SNPS and such. You can find out more about the test here: 23andMe

My kombucha is 10 days old today and has a very healthy new SCOBY floating at the top. I did the first taste test but it is still too sweet and needs more time. I am really glad it does need more time because I had no energy to bottle it today. I will do a whole post on my kombucha making experience at some point but for now here are a couple of photos of my first batch. The new SCOBY is the white rubbery layer at the top and the old SCOBY, (or Mother), has traveled down to the bottom of the jar. Perhaps she needed some privacy ;-)

Wednesday, January 21, 2015

What I'm Doing Now

After an unexpected horrific day yesterday, I've decided to start using my blog as a tracking tool to take snapshots in time for what I am doing from month to month. My hope is that I can make some kind of connections between what I am eating,  how active I am, how bad my brain fog and fatigue are, what protocols I am trying, and what I am taking as far as supplements and meds. I want to figure out why on some rare weeks I am able to paint in the studio, have visitors, go out grocery shopping and feel joyful. But many days/weeks I am flat on my back all week, horribly depressed, fatigued and in pain and can't even clean or cook. If there is some rhyme or reason to this I hope to find a common thread by weaving it all together  here.

What I'm Doing Now
Always searching for new ways to live the best I can with MSIDS (Chronic Lyme), Ankylosing Spondylosis, Psoriatic Arthritis, Raynauds, IBS, Systemic Inflammation, MTHFR Genetic mutation   and a cluster of other autoimmune issues. 

I am currently on the Autoimmune Protocol Diet and it is a struggle. I seem to have a lot of difficulty staying away from almonds, rice crackers, cashew butter, Lara Bars and Gin Gins. There also are the accidental exposures to things like black pepper, nightshades and who knows what else when eating the occasional lunch at the co-op while shopping. When I was on the strictes version of AIP for 3 months last year I was doing great. Then I started to add things back in but I didn't do it properly so I couldn't tell what was affecting me. Then a tragic loss happened in our family and it threw me into months of intense stress while trying to help out a family member. Fast forward to Christmas, even more cheating on AIP and I was bottomed out. Severe depression, fatigue, brain fog, vertigo, ear ringing, infections, and pain. I felt like a tapestry that had unraveled to it's last bare thread.

Since the beginning of January I have been working my way back to the strictest version of the Autoimmune Protocol diet and it is making a big difference. Still not 100% strict but very close at this point. The fatigue makes doing all that cooking very difficult, even with batch cooking.

Lunch today was a salad with fermented carrots, homemade AIP dressing, pasture raised ham 
and applesauce with cinnamon.

Because I have the MTHFR genetic mutation taking meds, supplements and even biologics like herbs can be a nightmare for me. My body just can't detox, so to date I have not been able to tolerate the slew of mainstream meds they have tried on me over the years. I am currently on a very short list of supplements that I seem to tolerate well. I sometimes ad in others either when my symptoms are very stable or I am in crisis but I will only post those when I am adding them in.
Here's the current list:
Co-Q10 100mg
Mag Glycinate 100-200 mg
Methyl-Guard by Thorne 2 pills a day (I was taking 4 a day last year but muscle testing showed a need to decrease)
Barleans Fish Oil EPA/DHA 2,000
Vit K2 & D3 combo by Ortho Molecular (5,000 D3 and 45mcg K)
Cholacol very rarely
Heartburn TX also rarely
1-2 of either plain vitamin C or Aller-C
Daily Lemon Balm Tea with raw honey and lemon
Fire Cider as needed

I am also currently brewing my first batch of homemade Kombucha to include in my fermented foods.

Meditation has always been such a struggle for me. Chanting as a form of healing meditation has become an important part of my life and I feel deeply drawn to the chants of the Sikh tradition as taught here in the USA by Yogi Bhajan in the 60's and 70's. They assist me greatly in transcending pain and copping with the crushing fatigue that keeps me from going out or even doing activities around my home. Still, I have trouble keeping up with a daily practice so I started an 11 day meditation on Tuesday January 19th using the chant at this link: Mera Man Loche – Meditation to Heal the Wounds of Love. It takes about 55 minuets to do it the full 11 times and it is always a challenge for me to sit still that long but I did it and I did feel very peaceful afterwards. I just hope I can keep it up for the full 11 days.

Below is a video where Satkirin Kaur Khalsa talks about Mantra

The other thing I don't get nearly enough of is exercise. During the non-icy months here in Vermont I walk on any day that my health allows. I don't got for very long walks or I get "Post Exertional Malise" for days, but I do love to take short walks in the woods. I also do a combination of physical therapy stretches and yoga but not nearly often or long enough. for some reason the stretching takes more energy than the walking. My goal is to work up to doing at least some stretching every day. I also love pool therapy but I can never get rides up to the therapy pool and last time I did a round of pool therapy the chlorine affected me negatively for days after each session. Wish I could find a salt water pool nearby. 

Tuesday, January 20, 2015

It's Complicated...

At 3:00 in the morning, sleepless, mind churning, trying to sort out thoughts and plans of actions. All I can come up with is "It's complicated".  At 4:30 AM it is no less complicated and by 5:00 AM I give in and get up. So here I am trying to weave together threads of thought that kept unwinding themselves throughout another long, sleepless night.

So what exactly is it, aside from a fever that fluctuates between 101.00 and 102.00, that keeps me up these past few nights? Welcome to a 60 second clip of my brain......
  • No matter how hard I try to hold onto the last bare thread of my life as a "Professional Artist" that part of my life has slipped away. I struggle with feelings of jealousy watching my professional colleagues carry on with their creative brilliance while my brain is too swollen most days to even lift a paint brush.  I hate feeling jealous of their ability to still create such beauty.
  • Part of the reason my artistic career exhausted me so much and was so stressful on me was because I was painting to please gallery managers and the public, never myself. I paid a dear price for the. 
  • Every time I try a new healing modality and I have a few good day's I am convinced I am in remission. Until I crash, and realize I'm not. Then I get depressed because my expectations were to high. I need to just soak in every brilliant moment of a good day and let it be just that, a good day. No labels, no further expectations.
  • I need to surrender and rest on bad days. The fighting, resenting, and flailing about isn't serving me. As a matter of fact even I am getting sick of that resistant, whining, part of myself. 
  • The fundamentalist relative that sent me an accusatory email, but didn't have enough of Christ's love in her heart to respond to the reply I sent to her, is tying me in knots. I realize for the last 23 years I have been trying to pretend to be something I am not to please her and it's killing me. (Note to self: Stop doing that. It's not working for either of you)
  • Stop looking to other people for love and start loving yourself. (Read that one again, often)
  • Why the F%@* is it so hard for me to stick to the strictest  version of the AIP (Autoimmune Paleo Protocol Diet) when I know it makes me feel so much better?
  • Why is the DENAS Scenar unit, (I just spent WAY more money than I could afford to on), so hard to figure out? 
  • Why do so may so called "Healers" charge exorbitant amounts of money to work with the very sick (Who are also often very poor)?
  • And WHY do I keep expending energy that I don't even have on gearing this blog in a way that no longer serves me? Answer: because when I write about my health nobody wants to read it so I try to write posts to please others. Hmmm...... I think I am seeing a trend here. 
Ok, so you get it, and that is just a tiny slice of what rolls through my bacteria burdened, inflammation ridden brain in the long, dark, sleepless night hours.

Things are going to change around here. Stay tuned!

Monday, January 19, 2015

My Mind Longs for the Vision

“My mind longs for the vision of the Guru's sacred blessing. It cries out like the thirsty songbird for the nectar of your name. My thirst is not quenched, and I cannot find peace until I receive the blessing of the beloved saint. I give myself and my soul for your blessing, my beloved teacher. Your presence is so beautiful, and the sound of your words (shabd) so filled with inner wisdom. It has been too long since this rain bird has had even a glimpse of water. Blessed is the land where you live, my true friend and loved one, my Divine teacher. I give myself and my soul to my beloved Divine Guru. An instant away from you brings darkness. When will I meet you, my venerated teacher? I can't endure this night, sleep eludes me until I enter your abode, my beloved Guru. I give myself and my soul to your true home, my treasured Guru. By good fortune, I met my Saint Guru and I have found that the immortal creator is within my true home, my own self, and so I will always serve you and never be separated from you even for an instant. Says Naanak, I'm your slave, my beloved Lord. I give myself and my soul. Servant Naanak lives to serve you.

*SHABD HAZARAY: This shabd, found in the Siri Guru Granth Sahib, was written as letters between Guru Arjan and his father, who was also his spiritual teacher, Guru Ram Das. It is beautiful poetry that expresses the pure love between a father and his son, a teacher and his student.”

Credits as listed by iBooks: Excerpt From: Karan Khalsa, Ramdesh Kaur and Yogi Bhajan. “Kundalini Transformation Kit: Yoga and Mantras for a Whole Heart (Healing the Heart and Bringing Love to Your Life).” iBooks. 

Available here: Spirit

Thursday, January 15, 2015

Invoke the Owls....

Be a person here. Stand by the river, invoke
the owls. Invoke winter, then spring.
Let any season that wants to come here make its own call. 
After that sound goes away, wait.

A slow bubble rises through the earth
and begins to include sky, stars, all space,
even the outracing, expanding thought.
Come back and hear the little sound again.

Suddenly this dream you are having matches
everyone's dream, and the result is the world.
If a different call came there wouldn't be any
world, or you, or the river, or the owls calling.

How you stand here is important. 
How you listen for the next things to happen. 
How you breathe.

"Being a Person" by William Stafford

Wednesday, January 14, 2015

Finding My Way Back, Again

I am finding my way back again from a relapse that lasted 6 long months. It is always sort of a  surreal feeling to slowly rise up and out of one of these dark and painful spells. Just being able to put one foot in front of another to go for a walk 3 days in a row feels a bit like the Red Sea parting. To  deeply draw into my lungs the fresh, crisp air and feel the distant January sun's effort to warm the earth beneath my feet is no less than a miracle to me. I listen to each footstep crunch on the snow covered road, that sound that comes after many subzero nights in midwinter. My mind is clearer and my heart is opening. Healing is returning and it reminds me of the joy that one feels in early spring, despite the frigid January weather. The cold is welcome, as long as I can feel like this I will take any weather with a glad heart. 

Each relapse takes a little more away from me. Each time I work my way back from a relapse my life appears a little more ghost-like to me. Sometimes I am OK with that, sometimes I'm not.  Each downward plunge brings me to a place so dark and painful that I fear, this time, I will surely disappear completely. My life becomes more and more unrecognizable and I flail around like a drowning person desperate for just one more breath of air. I shout, scream, rage and get really angry. I pray, cry and beg for relief. I yell at the people I love and push them away, because at times, the pain is so great that I need to draw back deeply inside myself. Trying to find a place where I can somehow navigate a path through one more hour, or day or or week. One slow deep breath, one whispered prayer at a time. 

Thank you to those of you that listen when I am down. Thank you to those of you that send love and prayers. I know it isn't easy to be around me when I am treading the turbulent waters of a relapse. But most of all, thank you to those of you that love me when I am at my most unloveable. You are the true Angels that God sends into my life and most of you I have never even met in person, which makes your love even more of a miracle to me. 

Today I am finding my way back to health. Maybe not back to the person I was, but that's ok. For right now  it's more than enough to just put one foot in front of the other, and with each crunch of the frozen ground, a prayer of gratitude goes out to all of you. May God's unlimited Grace surround you and bathe you in healing, joyful and radiant light. 

Sat Nam,

Saturday, January 10, 2015

A Friend Returns

You may remember the little fledgling Blue Jay that literally came knocking on our door one evening this past summer. I scooped him up and put him into a nest I had woven a couple of days earlier as part of a Jude Hill - Spirit Cloth workshop on weaving. Anyway this family of Jays nested near our house but were so shy all summer I was rarely able to photograph them. The same family has been visiting our feeder all winter but they continue to be extremely shy. Except for this little guy, he sits and watches me as I photograph him and he is not shy at all around me. I think he is the little guy that I gave my woven nest to, and remarkably, I think he remembers me. Jays are, after all, Corvids and are very smart like their cousins Ravens and Crows. Both having very high human face recognition from very early ages. 

Below are some photos of the fledgling Jay that showed up on our doorstep one evening last summer

Saturday, January 3, 2015

She that Was

She that Was

"From the severe onset of my illness and through its innumerable relapses, my place in the world has been documented more by my absence than by my presence. While close friends understood my circumstances, those who didn't know me well found my disappearance from work and social circles inexplicable. Yet it wasn't that I had truly vanished, I was simply homebound. Like a snail pulled into it's shell. Being homebound in a human world is a sort of vanishing. When encountering acquaintances  from the past I sometimes see a look of astonishment cross their face, as if they think that they are seeing my ghost, for I am not expected to reappear. At times even I wonder if a ghost is what I've become."  ~Elisabeth Tova Bailey, "The Sound of a Wild Snail Eating"


“There is a certain depth of illness that is piercing in its isolation: the only rule of existence is uncertainty, and the only movement is the passage of time. One cannot bear to live through another loss of function, and sometimes friends and family cannot bear to watch. An unspoken, unbridgeable divide may widen. Even if you are still who you were, you cannot actually fully be who you are. Sometimes the people you know well withdraw and then even the person you know as yourself begins to change. There were times when I wished my viral invader had claimed me completely. How much better to live an exuberant life and then leave as one exits a party simply opening a door and stepping out? Instead the virus took me to the edge of life and left me trapped in it's pernicious shadow. With symptoms, that, barely tolerable one day became too severe the next and then with the unjustness of unexpected relapses that overnight erased years of gradual improvement. 

All human beings experience isolation as torture. Illness isolates; the isolated become invisible; the invisible become forgotten." ― Elisabeth Tova BaileyThe Sound of a Wild Snail Eating

Gratitude goes out to my friend and fellow blogger Mo Crow for recommending this book to me. It is helping me beyond measure. Teaching me to narrow my focus and look for the grandness in small things. Check out Mo's incredible blog here:  It's Crow Time

Thursday, January 1, 2015

If You Fall Who Will Be There To Catch You?

Sometimes we need both hands to climb out of a place. 
Sometimes there are steep parts, where one has to walk ahead of the other. 
If I can’t find you, I’ll look deeper into myself. 
If I can’t keep up, if you’re far ahead, look back. Look back.” ~Anne Michaels

The fact is that an autoimmune flare up sucks! Period. It can feel like a form of extreme torture, a "Hell on Earth" beyond what most average people will ever experience in their lives. It can go on for days, weeks, months, or even years and flare ups don't have any respect for holidays, planned family events, or celebrations. Those of us that experience these "flares" often look to those around us for compassion, help, love and support. The problem is, that for some of us, our friends and family are just not able to be there for us. For whatever reason they are not capable of emotionally,  physically or even spiritually supporting us in our hours of need. Part of the problem, I believe, is that they can never truly know just how intense the pain and isolation really is. They may perceive us as being overly negative, or whiners that complain to much, or that we are just not trying hard enough. And, realistically, they are busy with their own lives, their kids, jobs, errands and their own life-issues. So they get off the phone more quickly when we call, they hide our Facebook posts from their newsfeed and eventually we disappear from their view altogether. 

Dealing with that much pain, disability and isolation by ourselves tends to plunge us into a deep dark pit of despair. All that negativity and pain rains down on us into that pit where it swirls around creating a cesspool made up of depression, pain, anxiety and loneliness.  Our thoughts and actions during these symptom flares tend to create a sort of "energetic vortex" that stirs things up even more. I am learning more and more that I cannot rely on the support of friends and family when I have a flare. If I do it will only add to my feelings of isolation. If my suffering around this issue is ever to end I need to learn acceptance in this area of my life. It is likely the kindest thing I can do for both myself and those around me. Part of that acceptance for me is remembering to lean less on people and more on God during these times. 

Psalm 121
A song of ascents.
I lift up my eyes to the mountains—
where does my help come from?
My help comes from the Lord,
the Maker of heaven and earth.
He will not let your foot slip—
he who watches over you will not slumber;
indeed, he who watches over Israel
will neither slumber nor sleep.
The Lord watches over you—
the Lord is your shade at your right hand;
the sun will not harm you by day,
nor the moon by night.
The Lord will keep you from all harm—
he will watch over your life;
the Lord will watch over your coming and going
both now and forevermore.

I came across this great article written by Eileen Laird on her blog, Phoenix Helix. I think it is a must read for both sufferers of autoimmune diseases and their family members. The article is called How to Survive an Autoimmune Flare . In the article she posts 19 important guidelines that we can use to help ourselves get through these difficult symptom flare ups. It is a very good list so I hope you will click the link and check it out. 

She also shares a video in which Eckhart Tolle talks about "The Wisdom of Surrender
"You don't need to accept an unpleasant or undesirable life situation. Nor do you need to deceive yourself and say that there is nothing wrong with it. No, you recognize fully that you want to get out of it. You then narrow your attention down to the present moment, without mentally labeling it in anyway. This means that there is no judgement of the now therefore there is no resistance, no emotional negativity. You accept the is-ness of this moment then you take action and do all that you can to get out of the situation. Such action I call positive action. It is far more effective than negative action which arises out of anger, despair or frustration. Until you achieve the desired result you continue to practice surrender by refraining to label the Now......."