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Friday, October 19, 2018

Life's Cherished Gifts

"Yesterday's the past, tomorrow's the future but today is a gift. That's why its called the present." ~Bill Keane, American cartoonist, 1922-2011

   It's been a busy two weeks here in my world. I've been writing every day with punctuations for a walk to stretch my body. I've cleaned out a ton of old paperwork, said goodbye to Les' three ring binder from the visiting nurses with all of their notes on the last six months of his care, and organized several drawers. I've also dug out file folders of family documents, pictures, and items I used to have pinned to my bulletin board at Cloudhouse. I bought a clear polyvinyl desk protector to lay on the dinette table and I slipped pictures and mementos underneath to help me with my writing.
My new memorabilia collage which lives under a desk protector on the dinette table. Each item represents some aspect of the things I am writing about now in my book rough drafts. 
My favorite oldest daughter Jesse, left with her favorite oldest son Micheal as a baby. The cartoon below is one I found over three decades ago and saved because it encapsulates my Jesse girl as a child in terms of her relationship with her sister. My favorite youngest daughter Sparky on the right as a teenager and far right a few years ago. Her cartoon also encapsulates a little of what she was like as a child too.  
The card top left came with a dozen roses from Les the day my spouse visa was accepted. I've had the Pinups on Writing for over thirty years. The picture of Les was taken in 2011 and is one of my favorites of my Best Beloved. I bought the post card of the Bison and the bird when I was thirty. Many times I've reminded myself to be like the Bison: develop a tough hide and call on persistence while turning my back to the wind. Some days all one can do is stand knee deep in the snow and wait...for spring.

This is one of my favorite poems, The Bus of Questions. It was written by my dear friend and member of The Wednesday Women,  Lisa Conger. 
The other poem which I couldn't get a clean picture of, is one I found years ago somewhere and it is so evocative of my life I have held on to it as a reminder of where I came from and how far I've traveled.

Autobiography in Five Short Chapters--Anon.

I walk down the street. 
There is a deep hole in the sidewalk. 
I pretend I don't see it. 
I fall in.
I am lost...I am helpless.
It isn't my fault. 

I walk down the same street. 
There is a deep hole in the sidewalk.
I pretend I don't see it. 
I fall in again. 
I can't believe I am in this same place.
But it isn't my fault. 
It still takes a long time to get out.

I walk down the same street. 
There is a deep hole in the sidewalk.
I see it is there. 
I still fall's a habit...but
My eyes are open.
I know where I am. 
It is my fault.
I get out immediately.

I walk down the same street. 
There is a deep hole in the sidewalk.
I walk around it.

I walk down another street.

    A week ago Britain caught the tale end of the hurricane that ravaged the Southeast coast of America. Over here is was named Callum. As it swept in from the west, passing over North Wales and into the borders I hunkered down for three days and nights and wind gusts up to 65 mph. Moored at Hurleston Junction just before the bridge, I had a front row seat watching boats coming off the Llangollen canal and out of Hurleston bottom lock where they have to turn right and cruise through the bridge towards Nantwich and NBV, or turn left and head towards Barbridge, Calveley and Chester. While the canal is wide enough to comfortably turn a boat at the junction, the towpath curves around to the right and the winds sweep down the lock flight, pinning boats to the side. Even on a mildly windy day the winds swoop down the hill across from the moorings before the bridge. More than once I have helped boaters who come slowly through the bridge to pick up a partner who was working the locks, only to find their boat pinned to the side. I am grateful to Ken Deveson for showing me how to pin the boat using spring lines. What a difference this makes in a storm! Yes the boat did rock side to side with the wind generated waves but she stayed secure and didn't slide vertically back and forth. Passing boats had no choice but to give their engine some welly to keep the high winds from shoving them into moored boats, but the spring lines kept NB Val secure and stable. Below are two videos from the wind storm.
   After the winds let up it was time to head back in to Nantwich. I had a leisurely cruise in lush and lovely afternoon sunshine. It took just under an hour to fill the 144 gallon water tank which was pretty low, dump the rubbish, and pick up three packages from the Laundrette. When I arrived at the Nantwich service point there was one boat moored on the 48 hour visitor moorings. I had hopes I might actually be able to moor up at the end of the moorings just up from the service point. By the time I finished filling up there were only two spaces left! Fifteen boats had come from both directions, quickly filling the empty mooring spots but I was lucky to get in where I wanted, just behind NB Bessie Surtees.
   We've passed each other throughout the past nine months, coming and going on the Middlewich arm and the Shroppie. She called to me once that she followed my blog so it was a pleasure to finally have an opportunity to stop and meet Phil and Barb and have a chin wag. They've been boating for years, and have lived aboard NB Bessie Surtees for four years now, cruising. Phil followed the blog from the beginning when Les first started it. Did I take a picture of them and their boat??? By the time I remembered the camera they had been to town and the chandlers and cruised off. Next time!!
   Yesterday my phone rang and Elsie Fletcher's lovely Welsh accent said, "Hi Jaq it's Elsie. We thought we would come for a visit this afternoon." Lovely!! It's always a treat to spend time with Elsie and Eric (NB Bendigedig). I cleaned up, popped a Betty Crocker gluten free Devil's Food Cake in the oven and finished putting together a Venison stew for dinner later. They came bearing flowers and cwtches (special Welsh hugs) and we spent several lovely hours setting the world to rights. Thank you Eric and Elsie for blessing me with your company.
The bijou Aloha Island Grill hut on Monroe Street in Spokane,Washington. There is just enough room inside for five people to stand and order at the counter. I've eaten many a Hawaiian plate lunch at the outside tables or in my car.
   I have been searching for recipes that are gluten free and still tasty. I find I still cannot fix most of the things I used to cook for Les. As everyone knows food is a potent means of stirring memories. I take no joy in cooking food for myself that Les and I enjoyed, without him here to share it, and most of those recipes need tweaking and substitutions to remove gluten, lactose, etc. For some reason I found myself thinking about one of my favorite Spokane take-aways from Aloha Island Grill on Monroe Street. 
Their Hawaiian plate lunches of Teriyaki chicken, macaroni salad, and sticky rice with Katsu sauce is food for the weary soul. This set me on an Internet search for recipes that might be close and I am happy to say I've found several I am going to test out soon.
   The other cuisine that has grabbed me by the gut is Middle Eastern--I finally found a Tzaziki sauce recipe I like and I cannot get enough of Chicken Souvlaki in gluten free pita bread. I am also jonesing for (craving) Dolmathes which are stuffed grape leaves.
   As a kid my parents hung out a couple they met through work. The Schei's had a daughter named Jeri who was close to my age and we hung out quite a bit. Her parents had been world travelers before settling in Anchorage and having children. They had ties to Egypt and Saudi Arabia and Lowell was a fabulous cook. I still remember everyone gathered around their table filling and rolling grape leaves. I wish I would've had the presence of mind to ask for some of his recipes but of course when one young, that isn't what is on one's mind. I've searched off and on for decades for a Dolmathe recipe close to Schei's and I've finally found one that I have adapted. I made a batch last week and they were so good! Now if I could just get Schei's recipe for salad dressing life would be darned near fabulous!
These Dolmathes are stuffed with a mixture of rice, organic lamb mince, finely diced onion, finely diced fresh mint and parsley, ground cumin and dash of Tobasco sauce, fresh lemon zest, olive oil, salt & pepper. Layered in an enamel cast iron pan, six cloves of peeled garlic are tucked down in between the layers which are topped with tomato passata (tomato sauce), olive oil and water, then cooked for 40 minutes after which the juice from a fresh lemon is squeezed over the top. These little rolls of love are addictive!
   My cold nose woke me this morning at 4:40 am. The coals had gone out in the stove and the boat was COLD.  I had planned to back up to the service point yesterday to top up the water tank but I woke to such thick fog and it didn't dissipate until noon, so I decided today was the day. At 8:00 am I started the engine, pulled the fenders up, folded down the TV antenna, slipped the tiller in place, untied the mooring lines and pushed NB Valerie out stern first, backing her up beyond the boat moored right behind me, past the permanent moored boats and over on to the service point landing. I topped up the tank, cleaned out the loo and the bathroom, dumped the rubbish, picked up the mail, and cruised slowly in the sunny chill of the morning wearing Les' green down Jacket for warmth.
Yellow roses from Elsie and Eric Fletcher, pink flowers and the birthday card from Ken and Sue Deveson, and pictures of loved ones. On the far left is Jesse with her favorite oldest son (and my favorite oldest grandson) who is now nineteen!
   Moored up now by the playground at the other end of Nantwich, I have a grocery order sorted for delivery tomorrow. The rest of today is one of leisure as it is my 61st birthday. I splurged and bought three books to read: two are Man Booker award winners and one is a BBC 4 book of the week: Lincoln in the Bardo by George Saunders (2017 winner), Milkman by Anna Burns (2018 winner), and Golden Thread: How Fabric Changed History. I am filled with a fine sense of satisfaction today as I completed all those chores and moored up again by 10 am, and I've received a lovely birthday card in the mail from friends, emails and e-cards from friends, and cell phone texts from friends and family. Today Life is good. xxx 

Tuesday, October 09, 2018

Ordinary Life

"Even the most ordinary life is a mystery if you look close enough. " ~Ingrid Bengis, American author, Fullbright Scholar, University Professor, Seafood purveyor to America's greatest chefs, and creator of the Island culinary and Ecological Center in Maine, USA, 1945-2017.

     I apologize for being absent for so long. I've been ill with a wretched cold. sore throat, and fighting the virus' attempt to colonize my lungs. I am over the worst of it now but I still feel a bit weak and wonky. I also damaged my left upper arm tendons and elbow tendons about six and a half weeks ago and this injury is healing very slowly, making things like typing, picking up the tea kettle and carrying a bag of groceries rather painful.
     I have a bit of catching up to do! First of all Irene and Ian on NB Free Spirit were in the area a few weeks back and they were kind enough to stop for a couple of hours to share a rainy morning nattering with me. their boat is aptly named, as this couple really embody the free spirit of cruising on the canals. Irene is known for her amazing and breathtaking wild life pictures which she shares on their blog and Ian is a stalwart cancer survivor and man with enough life experience and wisdom to laugh at life's absurdities while plundering it for the choice bits. A visit with them is always a joy; my only sadness comes from the fact that Les never had a chance to meet them.
Irene and Ian--two truly lovely souls, and our boats below, bow-to-bow. 

     I have been dawdling along between Audlem and Calveley, mooring up 10 days at a time, enjoying the end of the cruising season at last.  I was moored up at Hurleston Junction on double mooring pins fore and aft when I injured my arm. A count by Canal & river Trust (CRT) indicated that 100 boats made use of the Hurleston Lock flight over three days on one weekend. That gives you dear reader, an idea of just how many boats were passing by each day and sadly too many of them don't give a fig about observing good manners and slowing down while passing moored boats. The main offenders are Chas Hardern hire boaters, Midway Boats day boat hires, and private boat owners coming off long term moorings and out of marinas.  Day boats for those unfamiliar with the hire companies, are small boats of about 22-34 feet long with a lot of windows and seats. Groups hire them for a few hours or one day to cruise the canals and have a birthday or anniversary party.  For some reason day boat hirers seem to think the objective is crack on at the speed of light to get to wherever they are going and they are unaware of the wash they make. I even had a day boat attempt to cut around my bow when I was half way through turning around at a winding hole.  I had to warn him off. Then he decided he would go around the stern and had to yell at him to wait his turn as the fuel boat was breasted up to a moored boat just off the winding hole. This guy road my stern button past a long line of permanent moored boats until I found a place I could pull over and let him pass. Cheshire Cat hire boats seem to receive instructions on the issue and they almost always slow down.
     One old git on a private boat kept in a marina and visited throughout the summer, delights in passing moored boats at absolutely top speed, ignoring shouts and rude hand signs. He has passed me many times this summer and always left NB Valerie rocking heavily from side to side in his wake. Anyway, a boater passing to fast pulled my double mooring pins out and I had to quickly jump the fifteen inch gap caused by the Shroppie Shelf, and hammer them back in place. I was so angry I hammered the living daylights out of the pins and injured my arm. Act in anger (and haste) and repent in leisure. Since then I've also had a lovely visit from Ken and Sue Deveson (NB Cleddau), and Ken showed me exactly how to moor using spring lines on my boat. What a difference! While she still rocks from side to side when a boat passes at top speed and creates a large, frothy wake due mainly to the fifteen inch side gap caused by the Shroppie shelf, my boat isn't sliding vertically back and forth anymore. In the six years Les and I cruised he never once used a spring line, but he also had far more upper body strength than I do so perhaps he was better able to hammer the pins to China!
     It is true that if one hangs out on the canals long enough, one will see just about everything.  I was amazed one overcast and drizzly morning several weeks back to see a man walk by my windows leading a donkey! By the time I dug out Les' camera and slipped on some shoes the donkey-ish duo had passed NBV and the boat moored behind me, but I still managed to catch them as they headed for the bridge near Barbridge Junction. This still left me with puzzling questions, such as why walk along the canals with a donkey in the rain? The answer to my questions arrived a week later with the Towpath Talk newspaper.
     Adam Less is walking the length of Western Britain from Cape Wrath Lighthouse on Scotland's Northwest coast to Isle of Portland Lighthouse on the south coast of England. Less has undertaken this journey on foot to raise money for Centrepoint Charity which serving the needs of homeless young people in Liverpool where Adam lives. This is not Adam's first footloose trek. On his crowd funding site he says:
     "I am an experienced traveller and walker. Since 2004 I have completed long
term, rough travels in South East Asia; travelled overland from New York to
Tierra del Fuego and back again and in 2016 I walked 600 miles along the
Pamir Highway from Uzbekistan to Kyrgyzstan. Most recently, in 2017, I
walked 200 miles from Liverpool to Stranraer. From these journeys I have
been developing a philosophy of slow and rough travel, using these as ways to
experience places more deeply and have chance encounters with people I
meet along the way. I have been documenting these journeys, through writing
and photography, on my blog Adam Walks."
Adam Lee and his sidekick Martin the Donkey. 
     While I was filling up with water and dumping my rubbish at the Calvely service point, fuel boat Halsall was loading up with coal.  I had caught them on their way down to Ellesmere Port a few day previously and topped up the diesel, bought four bags of coal and three bags of kindling. I have twelve bags of coal on the roof now, ready for winter. Of course as the following pictures show, we've had a few cold nights recently. I've cleaned the chimney, checked the fire bricks for cracks, and re-pointed the fire concrete around the outside of the chimney where it joins the stove. I've also replaced the battery in the carbon monoxide alarm.  A warm, glowing fire on a cold night is a simple and deeply satisfying blessing.
Brrrr! A sign of things to come: ground frost.
Lee and Roberta fill the hold of Fuel boat Halsall with bags of coal for delivery to the likes of me and other boaters who live along the cut. It always lifts my heart to see them both as they bring their big working boat alongside NB Valerie. 
     As the seasons change the canals change too. Not just the foliage of the plants and the wildlife but the actual water in the cut. In the evenings when it cools suddenly, the water is warmer than the air and mist rises in columns, water souls rising into the evening air. Early morning on the cut sees the same phenomena repeat itself with misty clouds obscuring the crisp lines of the canal, towpath, and the hedges, lending a mysterious quality to the start of the day.
Evening mist forming on the Shropshire Union canal at Calveley. 
Morning mist near Barbridge after a very chilly night.
The full moon on a cold evening recently with the bow garden still growing in the short Autumn days and cooler nights.  
     I am moored in the basin at Nantwich Canal Centre. I've been having some issues with the engine and I couldn't put things off anymore so I arrived yesterday. Back in February after changing the oil, I noticed a black drip of oil from the back of the engine about half way down. I kept an eye on it and the absorbent pads I placed under the engine were soaked with dirty oil after about a month. I've been religious about changing the oil and filter every 350 hours.  In April a good local engineer gave the entire engine a good service, replacing fuel filters, etc. He commented at the time that engine oil was quite low before he changed it, so I became obsessed with worry about this issue. A couple of changes back I noticed a great deal of clean engine oil had totally soaked two absorbent pads, and it seemed to me there had to be an oil leak somewhere!
     The engine was smoking quite badly with blue-gray smoke upon starting as well so with some moral support from dear ones, I bit the bullet and brought NBV in for a look-see. The engineer found a cracked and leaking diesel return hose which had been leaking quite a bit into the engine bay. The good news is there is no engine oil leak as I had thought. The engine was full of carbon and coke and he blew it all out with a good run on high revs for some time. Black grit coated the surface of the water. He shut off the engine, let it cool down, looked for leaks again and then started it up and let it run for three or so hours repeatedly over a 24 hour period. She barely smokes at all now on a cold start, and there is no oil leak! the relief I feel is HUGE. My deepest thanks to Margaret, Linda, Mike and the rest of the Nantwich Canal Centre/Chandlers crew for looking after me and NB Valerie.
The view, starting from the right, inside Nantwich canal basin, of the back side of the businesses at Nantwich Canal Centre. The Chandlers is in the middle and the cafe is on the far left.  Below, the view continues on across the basin to the tunnel on the left where boats are painted.  

     Since Les always serviced our engine and dealt with the mechanics, or called River Canal Rescue (RCR) when something like a drove plate went, the learning curve on the bits and bobs which live in the engine bay has been steep. I am not the least bit mechanically inclined and Les didn't have time to teach me anything about the engine before he died. I've had to absorb things as I've gone along and friends like Any Elford, Ken Deveson and Bryce Lee have counseled, consoled, and offered me the wisdom of their own experience with boat engines. I am pleased to say when I changed the oil and filter two weeks ago, it was the first time I didn't have to think the entire process through and then refer line by line to my notes. I simply grabbed a pair of latex gloves, an empty bin bag for rubbish, and a new oil filter, climbed down in the engine hole and thirty minutes later--job done! It hit me as I climbed back up out of the engine bay;  I am comfortable and knowledgeable enough now to remember the sequence of events for an oil change and clean up, and I have confidence in my abilities. Les would be proud of me. I can hear his voice telling me so.
Me and Les in 2012 on the nearby Llangollen canal.  

Saturday, September 08, 2018

Researching Autoimmune Diseases:Part II-Leaky Gut and Food Intolerances

"What we find changes who we become." ~ Peter Morville, British author and president of Semantic Studios, an information architecture and findability consulting firm

     Autoimmune diseases (AI) all begin with a dysfunction of the gut mucosa. This is now a researched and documented fact that has become solidified in research and literature in the last year and a half. 
     What is the gut mucosa?  It is the largest and most dynamic immunological environment of the body which is a clue to why all AI disease begins in our guts. It's often the first point of pathogen exposure and many microbes use it as a beachhead into the rest of the body. 
     Our intestines have a top layer of mucosa with villi--these look like fat strands of fingers which increase surface area and regulate nutrient absorption. This layer is made up of a particular type of cell called epithelium. These are some of the fastest growing cells in our body which is why they are frequently targeted in cancer treatment--even if the cancer is not in our digestive tract. The chemo drugs cause our epithelium cells which also line our mouths, esophagus, stomach, small and large intestine and rectum, to slough off and die, leaving us raw and unprotected literally from mouth to anus. Often cancer patients undergoing chemo will die not from cancer but from toxic cell overload. So many cells--most of them healthy--have died and the liver and kidneys cannot process the dead cell load which causes them to shut down. (Coffee enemas can stop this from occurring.) 
     This layer of intestine forms a barrier between itself and the layer underneath where there are clusters of cells with spaces in between called junctions. In a healthy digestive tract a tight junction is regulated. Interocytes (a particular type of cell) form space between the junctions. They allow electrolytes and minerals to pass through and keep larger molecules and pathogenic bacteria from escaping. More than sixty proteins regulate this space. A tight junction is regulated so that enzymes can capture nutrients (vitamins, minerals, amino acids, and hormones) from our digestive tract and deliver them wherever they are needed by our bodies. This is the act of nutrition and this process provides the fuel our bodies need to function. This is actually why we have to eat and drink. If there is a breach in its integrity we have illness. Food may remain undigested for a variety of reasons, especially if there are pancreatic issues or a lack of digestive enzymes.

The Importance of Enzymes
     These amazing proteins do more than just help remove grass and blood stains from our clothes! Yep your biological laundry detergent is called that because it has enzymes in it. Enzymes are specific amino acid proteins that act as catalysts to living cells. Enzymes are required by our bodies for every single function we undertake--blinking our eye, smacking our lips, yawning, muscle contraction, breathing, and digestion to name a few. Digestion is the single most difficult process our bodies undertake!! Think about that, because we indiscriminately pop food and drink into our mouths all day long and give it little to no thought once we swallow it.
     Enzymes are the human body's life force. They exist in all living things so of course our food has enzymes in them as well. When we are cooking a meal, that lovely smell of meat roasting or coffee brewing is caused by the enzymes dying off from exposure to heat. Raw food and food heated to a very low temperature has living enzymes in it. The safe register of temperatures seems to be 117F/47C for liquids and 150F/65C for solids. This is why we go into a food related coma after indulging in loads of food as part of a celebration like Christmas. Most of that food has been cooked and no longer has any enzymes in it. We overload our digestive system and it must literally borrow enzymes from everywhere else in our bodies in order to deal with the process of digestion. This is also why when we are seriously ill, our food should be fresh, organic and as raw as possible. Our immune system has marshaled our enzymes to go into battle and it needs a massive amount of available enzymes to do that. Fresh squeezed juices are ideal because they will literally digest themselves without using enzymes from our body functions. This allows more enzyme availability to our immune system for healing. Two thirds of our immune system is in our gut for good reason: we take in pounds and pounds of food requiring being broken down and it all has bacteria on it--probiotic (good) and pathogenic (bad).

Gut Permeability (Leaky Gut) 
   Undigested food will rot in our guts and it will present itself under the cell layer between our digestive system and the rest of us--the gut mucosa. This absorptive mechanism is as big as a tennis court and one cell thick. Food proteins cross a compromised gut mucosa into the bloodstream. These proteins are attacked by our our immune system defenses and they settle into our joints. Look at your fingers. If you have developed hard knobs at the joints of your fingers you have a leaky gut. 

See the pronounced knobs at the first joint of my finger? Those are caused by leaky gut syndrome and inflammation. Our blood stream seeks to dump the garbage escaping from our guts that our liver and kidneys cannot process. The spaces in our joints are available space. Inflammation of our joints is the result.  
Arthritis is often a signal of this issue as our immune system creates an inflammatory response to food particles and gram negative bacteria escaping from our guts. Our joints become inflamed as a response.
     This is why it is crucial to avoid regular or prolonged use of all NSAIDS (Ibuprofen, Aspirin, Paracetamol/Tylenol, Motrin, Aleve. These over the counter anti-inflammatory pain relievers cause leaky gut, destroying sections of your gut mucosa. For this same reason we need to avoid inflammatory foods in our diet and avoid foods that activate our immune systems. If gut permeability or leaky gut syndrome lasts long enough the epithelial cells cannot repair themselves  quickly enough or the repair cannot last before the cells are destroyed by the next onslaught of NSAIDS and inflammatory food and drink. 
     When this permanent breakdown occurs malabsorption results in malnutrition. We could eat loads of food all day but our guts can no longer access and deliver the nutrients in our food to our bodies where they are needed. Some of the signs of leaky gut and malnutrition are excessive shedding of hair, gas and bloating, intolerance to fats, transit times changes in bowel movements (BMs), undigested food and change of color in BMs, and fluctuating between diarrhea and constipation. All foods from first bite to BMs should move through our systems in 24 hours and they should not smell putrid. Gut permeability is one of the causes of gut dysbiosis which is a bacterial imbalance in out gut. We don't have enough or any pre and pro-biotic bacteria and we are overloaded with pathogenic (disease producing) bacteria. Proper digestion can no longer take place.
     Digestion begins in our mouths with Amylase which is a digestive enzyme in our saliva. It continues in our stomachs which are filled with very potent acid to kill off pathogenic bacteria, then continues in our small intestines. Our large intestine breaks down fermentable and starch resistant fiber and primarily removes the water from the digested and processed waste products and stores it for a short time until we void it.

Acid Reflux 
     One of the big issues for people with digestive upset is prescription drug use. Our stomachs are high in acid and low in PH, about 1.2, 1.5, to 1.7. Often those experiencing bloating and gas will take Nexium (Esomemprazole). This purple pill brings the PH in the human stomach up to 5--from the PH of battery acid to that of vinegar! We need the high acid PH to break down proteins and when our stomach acid is too weak we can experience issues with mood swings, muscle function, lack of energy and even a mild shift in stomach acid can result in the formation of auto-immune antibodies to protein, by a factor of 10, causing gut permeability. Most of us don't produce enough acid. Clues are an insufficiency of vitamin B12 production, fatigue, headache, odor intolerance, neuropathy (tingling hands, feet and legs), insufficient magnesium and potassium causing involuntary eyebrow twitches, calf and foot cramps, and muscle fatigue.
     Aging causes us to manufacture less hydrochloric acid in our stomach and yet this is the population that ingests the most acid reflux medications. Soda pop and sugar also inhibits our ability to make adequate stomach acid.

      Crohn's and Colitis are inflammatory bowel diseases. Inflammation contributes to a host of other AI diseases such as Rheumatoid Arthritis, Hashimoto's disease, Asthma, and Psoriasis and others so it is a huge issue to address in seeking good health. There has been a 25% increase in inflammatory bowel disease world wide. The main cause of inflammation in the body is a reaction to things that cause inflammation to occur. Inflammation metabolically demands our bodies use all of the available vitamins and minerals to support the anti-inflammatory process. This process also uses all of the available amino acids taurine, glutathione and glycene and our bodies do not produce these essential amino acids. They must be replaced in our food or with supplements. Also our digestive tract cannot function without enough glutathione. It is key to healing from any kind of digestive tract surgery or illness. What kind of foods cause an inflammatory response? The answer to this can vary from person to person but first and foremost is gluten.

Gluten Intolerance
     Antibodies are a type of blood protein produced in response to and counteracting a specific antigen (toxins or foreign substances which produce an immune response). Antibodies combine chemically with substances which the body recognizes as alien, such as bacteria, viruses, and foreign substances in the blood. Lectins and glutinen/gliadin found in gluten bind to human tissue and can cause inflammation to occur if our bodies mistake the bound human tissue for the food causing an allergic reaction. Antibodies form which attack and destroy tissue--intestines, brain, bone, thyroid, heart...
     We humans are not ruminants; we did not evolve as a species to digest grass grains such as wheat, rye and barley. The thing is, it is not a case of either you suffer from gluten intolerance (GI) or you don't. The majority of humans on our planet have a response to gluten/gliadin. Patients who have removed gluten from their diets for three months and then ingested gluten again often risk their lives. It is like a switch is flipped and a six fold increase in deaths with one ingestion of gluten can occur. 
     Genetics is behind most of this. We inherit or fail to inherit from our forebears the ability or inability to manufacture certain levels of the protein heptoglobin (Hp) which binds to excess hemoglobin (another protein responsible for transporting oxygen in our blood). There are two ways we can inherit this protein depending on whether or not it is present in the DNA we inherit from each of our parents at the moment of conception: Hp1 and  Hp2. which arose in human populations as a duplicate of Hp1. Three genotypes of Hp, therefore, are found in humans: Hp1-1, Hp2-1, and Hp2-2. (If you find this confusing think of what you learned in junior high school science classes about inheritance of blue and brown eyes). If you test for Hp and are found to have Hp1:1 you will be okay eating gluten. If you have 2:2 you must never eat anything with gluten in it--not one molecule. Those with Hp 1:2 are okay for about an hour before GI kicks in and they will suffer from gut permeability for up to three hours after ingesting gluten. Research shows that individuals with AI diseases manifesting in childhood such as Asthma and Diabetes type and have inherited either Hp 1:2 or 2:2. Those with Coeliac disease always have Hp 2:2. 
     There are also other genes involved which I won't go into. This inheritance is driven by cultural factors. Populations that experience difficulty digesting gluten are Japanese, Southern Chinese, Koreans, Africans from the Western Sahara, Northern India and the Punjab, Northern Italians, Sweden, Finland, Norway, Denmark, and Irish for whom wheat was not grown or eaten before the 18th century, Indigenous North, Central, and South Americans, and the Balkans.
     If you live in a country like America or Australia where all of the population except indigenous peoples are immigrants or come from immigrant populations then its important to know your genealogy. Research undertaken by the NHS indicates that one in every 100 Britons has Coeliac disease. Given that this is a northern climate and wheat farming came late to the Island, combined with the large immigrant population here I am not surprised. 
     In a patient survey done for FMS offices throughout North American, ninety percent of those who cut out gluten from their diets for one month felt better and had more energy. Now if you are not GI then simply being mindful of which products include gluten and cutting back on how much gluten you ingest can make a positive difference in your health because just as we did not evolve to eat red meat every day, we didn't evolve to eat, breath, and absorb gluten very often. It is a similar thing with soy. The Japanese eat soy in tofu and sauce but not every day. In the west soy has become ubiquitous. It is yet one more ingredient in everything and ingesting as much soy as we do is not healthy. Research shows high levels of soy can induce breast cancer.  
     The symptoms of Gluten Intolerance are bloating (all human bodies contain yeast. Think about what happens when yeast, wheat, and liquid come into contact with one another), diarrhea, constipation, smelly feces, abdominal pain, headaches, fatigue, skin rashes, depression, unexplained weight loss, and your digestive tract shuts down.
     Wheat is in everything!! Besides the obvious items such as baked goods, it is in toothpaste, lipstick, body cream, shampoo,  spices, shredded cheese, sauces and condiments, soups, ready made meals, frozen seafood, chicken and other meats, vitamins, supplements and pharmaceutical drugs.
     One final note about the distinctions between Coeliac disease, gluten intolerance and diet fads. Coeliac disease is not simply an intolerance. It is a severe allergy to gluten and a total inability to tolerate or digest gluten. Brain damage and death can result from exposure to gluten as result. If you have a parent with Coeliac disease you have a one in then chance of developing it yourself. Some individuals are born with the disease active and some don't develop symptoms until shortly after birth or later in life. Their bodies cannot digest and synthesize any form of gluten and further, ingesting gluten can cause serious brain damage for them. So imagine for a moment you have given birth to a baby that has Coeliac disease and of course, you won't know this until months go by as your child fails to thrives, slowly starving and withering before your eyes.   
     Individuals like myself who have tolerated gluten from birth up until some point in life when an AI disease manifests with an inability to digest glutenare what is known as NCGI-Non-Coeliac Gluten Intolerant. But trust me when I tell you that the distinction for me is irrelevant. I am okay eating glutenized foods while chewing, swallowing, and my body is breaking it down in my stomach. The minute however the gluten leaves my stomach I am in a world of terrible pain--pain that makes labor pains seem by comparison, mild. My intestines and colon immediately begin swelling, feeling as though  someone has filled them with expanding foam insulation and it hurts like hell. the swelling is so sever that my liver, kidneys and ribs ache. There is no way to get comfortable or reduce the pain. I have to live with fifteen to thirty hours of excruciating pain as the glutenized food moves slowly and I do mean slowly through my intestines where a battle between the gluten and my immune system is being waged which makes digestion negligible. Peristalsis (the contraction of the intestine and colon to move food and waste products through the gut) often comes to a halt and life revolves around severe pain that radiates out in endless waves from my guts. I cannot sleep, eat, walk, sit, lay down or engage in any activities to try and take my mind off it...I am trapped in a cage of terrible pain that won't go away. For me Codeine is the only thing that removes the pain, but it has the side effect of making one constipated which can obviously cause further troubles. I will do anything not to experience this pain again--ever. I consider myself lucky that my digestive tract is not so damaged that a stoma is necessary. I can change my diet and control the disease.
     Diet fads come and go and currently going gluten free is the latest health fad with unfortunate consequences for Coeliacs and NCGI individuals who attempt to eat out in restaurants. The majority of food handlers and servers in public eating facilities don't understand the deadly consequences for people who ask for gluten free foods. Thinking of it as a fad, they don't realize that foods for Coeliacs and NCGI individuals must be prepared separate from foods with gluten in them and the prep area must be gluten free, and often food establishments will list an item on their menu as GF when it has been cross contaminated with gluten during the preparation. I experienced this first hand when I queried the owner of  Baked Onboard--the Pizza boat, I asked it he offered GF pizza. He replied cheerily "Nope but I do have a sourdough pizza and as long as you aren't Coeliac then you can eat it. NCGI people have tolerated it just fine." Well, actually no I can't and I suspect his customer that do were not NCGI but those trying out the newest diet fad for health reasons.     

Lactose Intolerance
 The inability to digest the sugar lactose in dairy products is also inherited and interestingly enough the map of intolerance by ethnicity is nearly the opposite of the map for gluten intolerance. Cultures in which lactose intolerance is common are those countries in the south: Central and south America, Africa--especially south Africa, Southern India, China, Japan, Korea, Malaysia, and all Indigenous peoples in most areas of the world. That's a lot of folks who cannot properly digest dairy and ignoring this issue can and does cause Leaky gut which can eventually lead to an AI disease. 
     The symptoms of lactose intolerance are abdominal bloating with pain and cramps,  diarrhea, gas, nausea, vomiting and borborygmi which is a loud on-going rumbling, gurgling sound from the stomach.

Vitamin D-the Vitamin Which is NOT a Vitamin!
    Finally, low amounts of Vitamin D puts us at risk for developing AI disease and cancer--it is just that important!! The prime level of Vitamin D is 30 nanograms or above. Vitamin D isn't actually a vitamin at all--it is a steroid hormone. If you plan to rely on absorption from the sun for your Vitamin D here is the scale of exposure: at least 15% of your body must be exposed. Fair skinned folks actually need forty minutes of exposure and that obviously cannot happen all in one go! Your exposure needs to occur over a period of days. If you are olive skinned you will need eighty minutes of exposure and if you are very dark skinned you will need an hour and twenty minutes of exposure. It should also be obvious to anyone with two brain cells to rub together that Sunscreen inhibits the absorption of Vitamin D. Finally do it when you are dirty! Human skin creates a layer of oil called sebum. Our bodies need sebum on the surface of our skin in order to metabolize sunshine and turn it into Vitamin D so don't go out after showering and expect to manufacture anything but a tan or a sunburn
     One way of getting more D in your diet is to eat more mushrooms, but first lay them out in the sunshine for twenty minutes. Mushrooms are just like humans in that they do not internally manufacture Vitamin D but if they sit in the sun for nearly half an hour they will make Vitamin D and store it, for our bodies to use when we eat them.

     Processed sugar triggers the release of inflammatory messengers called cytokines. These cells are produced by our immune system so eating large amount of sugar causes our immune system to being a hunt for a culprit. It is i like the boy who cried wolf. Eat too much sugar too often and AI disease results as the immune system goes into overdrive and is never allowed to rest.
     How much sugar is too much? for a healthy person the maximum amount of sugar one should eat daily is 25 grams or 6 teaspoons. The average human in First world countries ingests at least 19.5 teaspoons of sugar daily. This includes sugar of any color, fructose, glucose, sucrose, maltose and galactose. did you know that excessive amounts of sugar cane lead to early dementia? if you need a little sweetening in your life I suggest you keep it low and opt for glucose which is the only sugar our brains need to function. I learned from my local beekeeper that spring honey which is lighter and sets up quicker than summer or autumn honey which is darker and lot more fluid, that spring honey contains more glucose and the other two seasonal honeys contain more sucrose.
     Type 2 diabetes is in the process of being redefined from a metabolic disorder to an autoimmune disease. Immune cells cause inflammation if fatty tissue that protects our internal organs. As we gain more weight and develop more dense layers of fat around our organs  becoming a health threat. Our immune system kicks into overdrive and begins producing Killer T and B cells involved in antibody response, causing inflammation in the fatty tissue which over time inhibits the fat cells' ability to respond to Insulin, allowing fatty acids to leach in to the blood stream and diabetes results.
     Okay I will stop here for now and my next post will cover environmental toxins and AI disease. My fourth and final post on this subject will cover diet and supplements.

Wednesday, September 05, 2018

Researching Autoimmune Disease-What I've Learned So Far Part I: Treatment Modalities

"Research is formalized curiosity. It is poking and prying with a purpose. "  ~ Zora Neale Hurston, American author and anthropologist, 1891-1960.

     About four months back I promised in one of my blog posts that I would share what I found after researching Irritable Bowel Syndrome (IBS) and Crohn's Disease. Needs must as they say, and my personal health requirements drove me to research as much as I could about this topic in order to have a better understanding of my own body, the illness with which I have been recently diagnosed and the treatments available through both modern and alternative medicine.
     Crohn's disease as standard modern medicine defines it, is an Auto Immune (AI) disease of the digestive tract in which the immune system for reasons unknown, attacks the small  and large intestines, causing scarring and a shut down of the digestive tract's ability to function in harvesting nutrients for our body and disposing of waste. It falls under the umbrella category of IBS, which also embraces a wide canvas including other symptoms such severe bloating, gas, and cramping, diarrhea and constipation that come and go over time and last days, weeks, or months, and Colitis which is inflammation of the rectum and the colon. Modern medicine has no answer for what causes IBS and its relatives Crohn's and Colitis. Sometimes diagnostic tests can pinpoint an infection of the bowel but most of the time there is no one thing that points to what caused the disease. All three conditions may also be accompanied by fever, fatigue and high white blood cell count. All three are chronic, progressive diseases for which there is no known cure.
     How does Crohn's Disease differ from Colitis? It affects the entire digestive tract which is inflamed and ulcerated, most commonly the Ileum which is the last part of the small intestine, and the large colon. The ulcerative areas are usually patchy with healthy gut in between. These ulcers may affect the surface of the bowel or be embedded deep in the bowel wall. The symptoms for Crohn's in addition to the ones listed above for IBS/Colitis are blood in one's stool, mouth sores, malnutrition, hair loss, secondary skin rashes, loss of appetite and weight loss, anal fistulas causing a great deal of pain and bleeding as the rectum is part of the colon and becomes ulcerated which causes fistulas to form.
     Other more serious health issues often accompany Crohn's such as skin problems, mouth ulcers, blisters and ulcers on the skin, and painful red swellings, usually on the legs; inflammation of the eyes, thinner and weaker bones, liver inflammation, blood clots (including deep vein thrombosis), and anemia (a reduced level of red blood cells). Around one in three people with IBD experience inflammation of the joints, usually their elbows, wrists, knees, and ankles. More rarely, the joints in the spine and pelvis become inflamed – a condition called ankylosing spondylitis. This can cause stiffness and pain of the spine.
     Who develops Crohns? It is a disease primarily of urban, northern areas in developed nations. It is more likely to affect Caucasians of Ashkenazi Jewish descent (Jews from Russia and Eastern Europe). It can begin at any age from 10-40 and Crohn's is on the rise in children and teenagers. It is more common in women than men, and in smokers. My only resemblance to any of the above groups is being a female living in a developed northern country.
     Modern medicine classes Crohn's as one of the 89 known AI diseases, for which there is no known reason why they occur. Treatment tends to be similar across the AI spectrum with pharmaceutical drugs used as a cocktail to shut down the immune system and decrease inflammation in order to bring about remission. Many of these drugs were originally designed to treat cancers. Once the condition is under control, your doctor will usually continue to prescribe drugs to maintain remission and prevent relapse – this is called maintenance treatment and it means an AI sufferer will be on those medications for the rest of their lived. In some cases, if medical treatment is not effective, then surgery may be required and a stoma may be needed. One last caveat; none of these drugs cure any AI disease and most do not actually slow the progression of the disease over time. All AI diseases are chronic and progressive. 

Modern Medical Treatment 
     For inflammation the following drugs are usually prescribed:  
     Corticosteroids such as prednisone and budesonide (Entocort EC): these drugs can help reduce inflammation in your body, but they don't work for everyone with Crohn's disease. Doctors generally use them only if you don't respond to other treatments. Corticosteroids may be used for short-term (three to four months) symptom improvement and to induce remission. Corticosteroids may also be used in combination with an immune system suppressor.

     Side effects of Corticosteroids are an increase in appetite, weight gain, insomnia, fluid retention, moodiness and irritability, anxiety, osteoporosis (weak bones), hypertension (high blood pressure), diabetes, increased vulnerability to infection, cataracts and glaucoma, thinning of the skin, bruising easily, and muscle weakness. In women corticosteroid use frequently causes extremely heavy, dark hair growth all over the face, requiring daily shaving as men do. Some patients find they gain a massive amount of weight on steroids which are a class or hormones, and some experience a locking of their joints and an inability to bend at the wrists, elbow and knees. In addition those undergoing corticosteroid use as is sometimes the case for some cancers, may develop what is termed "moon face" as Les did in the last months of his life, where the weight gain and fluid retention causes a distortion of the facial features.
     Oral 5-aminosalicylates: These drugs include sulfasalazine (Azulfidine), which contains sulfa, and mesalamine (Asacol HD, Delzicol, others). Oral 5-aminosalicylates have been widely used in the past but now are generally considered of limited benefit.
     Side effects of these drugs are headaches, rash, nausea, abdominal pain, vomiting, fever and diarrhea. In small numbers of patients these drugs are linked to pancreas and kidney problems. In these drugs, salicylates are synthetic aspirin compounds. 
Immune system Supressors:
     Azathioprine (Azasan, Imuran) and mercaptopurine (Purinethol, Purixan). These are the most widely used immuno-suppressants for treatment of inflammatory bowel disease. Taking them requires that you follow up closely with your doctor and have your blood checked regularly to look for side effects, such as a lowered resistance to infection and inflammation of the liver. They may also cause nausea and vomiting.
     Infliximab (Remicade), adalimumab (Humira) and certolizumab pegol (Cimzia). These drugs, called TNF inhibitors or biologics, work by neutralizing an immune system protein known as tumor necrosis factor (TNF). There have also been rare reports of serious blood disorders with some of these drugs along with symptoms such as persistent fever, bruising, bleeding, paleness, pain, muscle weakness, numbness and blurred vision, blocked or runny nose, headache, dizziness, flushing, rash, abdominal pain or indigestion.
Methotrexate (Trexall): This is a cytotoxic chemotherapeutic drug used in the treatment of  cancers of the breast, skin, head and neck, and lungs, along with some leukemias and lymphomas as well as many AI diseases. Methotrexate is a type of anti-metabolite which means it stops cells from making and repairing DNA--the instructions for the repair of every cell in your body.
     Side effects may include black tarry stools, blood in urine or stool, bloody vomiting, nausea, diarrhea, joint pain, reddening of the skin, sores on the mouth or lips, stomach pain, swelling of the feet and lower legs, hair loss, loss of appetite, and less common side effects are boils, red, itchy skin patches, back pain, blurred vision, confusion, seizures, dizziness, drowsiness, fevers and chills, headache, painful urination, shortness of breath, unusual bleeding or bruising, and severe jaundice (yellow eyes and skin). Methotrexate use can activate a virus that increases the risk of developing Lymphoma which is cancer of the immune system.
Natalizumab (Tysabri) and vedolizumab (Entyvio): These drugs work by stopping certain immune cell molecules — integrins — from binding to other cells in your intestinal lining.
     Side effects of these drugs are upper respiratory and urinary tract infections, headache, depression, diarrhea, stomach pain, rash, nausea, fatigue, fever, pain in hands and feet, joint pain. Natalizumab use raises the risk of a rare but potentially fatal brain infection called progressive multi-focal leukoencephalopathy. It can also cause allergic reactions and liver damage.
Ustekinumab (Stelara): Monoclonal antibodies are laboratory-produced molecules engineered to serve as substitute antibodies that can restore, enhance or mimic the immune system's attack on cancer cells. They are designed to bind to antigens that are generally more numerous on the surface of cancer cells than healthy cells. Bear in mind that while monoclonal antibodies attack cancer cells they also affect healthy cells. Here is what they do:
     Some immune system cells depend on antibodies to locate the target of an attack. Cancer cells that are coated in monoclonal antibodies may be more easily detected and targeted for destruction. Some monoclonal antibodies can trigger an immune system response that can destroy the outer wall (membrane) of a cancer cell. Some monoclonal antibodies block the connection between a cancer cell and proteins that promote cell growth — an activity that is necessary for tumor growth and survival. In order for a cancerous tumor to grow and survive, it needs a blood supply. Some monoclonal antibody drugs block protein-cell interactions necessary for the development of new blood vessels. Certain proteins that bind to immune system cells are regulators that prevent over-activity of the system. Monoclonal antibodies that bind to these immune system cells give the cancer-fighting cells an opportunity to work with less inhibition, i.e. they suppress the immune system. Certain monoclonal antibodies may attack cells more directly, even though they were designed for another purpose. When some of these antibodies attach to a cell, a series of events inside the cell may cause it to self-destruct.

     Common side effects are allergic reactions such as hives and itching, flu-like signs and symptoms including chills, fatigue, fever, and muscle aches and pains; nausea, vomiting, diarrhea, skin rashes, low blood pressure.
     Serious but rare side effects are severe allergic reactions which lead to death; low blood cell counts that are severe and persistent. If your red blood cell count is low your body becomes starved of oxygen due to anemia. Your heart has to work harder to compensate for the lack of oxygen and this can lead to an enlarged heart and heart failure.  If your white blood cells are low you can develop neutropenia which leads to infections like Sepsis. Certain monoclonal antibodies increase the risk of high blood pressure, congestive heart failure and heart attacks. Some monoclonal antibodies are associated with a higher risk of inflammatory lung disease. Sores and rashes on your skin can lead to serious infections. Serious sores can also occur on the tissue that lines your cheeks and gums (mucosa). Monoclonal antibody drugs designed to stop cancer from forming new blood vessels have an increased risk of severe internal bleeding.
Ciprofloxacin (Cipro) and Metronidazole (Flagyl): Cipro is often used to treat bone, joint, intra-abdominal infections and Typhoid Fever. Flagyl is used to treat pelvic inflammatory disease, endocarditis, and bacterial vaginosis. It is effective for giardiasis, trichomoniasis, and amebiasis. It is an option for a first episode of mild-to-moderate Clostridium Difficile colitis  (Cdiff). Flagyl is particularly effective at treating parasitic infections of the digestive tract.
     Side effects of Cipro are diarrhea, dizziness, drowsiness, stomach upset, abdominal pain, nausea/vomiting, blurred vision, nervousness, anxiety, agitation, insomnia and nightmares. Serious but less likely side effects are fainting, heart arrhythmia, sudden pain, snapping or popping sound, bruising, swelling, tenderness, stiffness, or loss of movement in any of your joints; contact your doctor immediately if you experience watery or bloody diarrhea; confusion, hallucinations, depression, unusual thoughts or behavior; seizure (convulsions); severe headache, ringing in your ears, pain behind your eyes; pale or yellow skin, dark colored urine, fever, weakness; urinating less than usual or not at all; easy bruising or bleeding; numbness, tingling, or unusual pain anywhere in your body; the first sign of any skin rash, no matter how mild; or severe skin reaction -- fever, sore throat, swelling in your face or tongue, burning in your eyes, skin pain, followed by a red or purple skin rash that spreads (especially in the face or upper body) and causes blistering and peeling.
     Side effects of Flagyl are nausea, metallic taste, loss of appetite, headache, abdominal cramps, diarrhea, dizziness, dry mouth, and fever.  Uncomfortable side effects which may become serious are pain with urination, tingling or pricking sensations that become permanent (neuropathy), seizures and brain disease.
Other Medications 
Anti-diarrheals: A fiber supplement, such as psyllium powder (Metamucil) or methylcellulose (Citrucel), can help relieve mild to moderate diarrhea by adding bulk to your stool. For more severe diarrhea, loperamide (Imodium A-D) may be effective.
Pain relievers: For mild pain, your doctor may recommend acetaminophen (Tylenol, others) — but not other common pain relievers, such as ibuprofen (Advil, Motrin IB, others), naproxen sodium (Aleve). These drugs are likely to make your symptoms worse, and can make your disease worse as well.
Iron supplements: If you have chronic intestinal bleeding, you may develop iron deficiency anemia and need to take iron supplements.
Vitamin B-12 shots: Crohn's disease can cause vitamin B-12 deficiency. Vitamin B-12 helps prevent anemia, promotes normal growth and development, and is essential for proper nerve function.
Calcium and vitamin D supplements: Crohn's disease and steroids used to treat it can increase your risk of osteoporosis, so you may need to take a calcium supplement with added vitamin D.

     Given that I am allergic to many of components of the prescription drugs used to treat Crohn's and the side effects of most of the drugs are too toxic for me to risk, I also researched alternative treatments and therapies and began to compare and contrast both methodologies. While researching this I came across Functional Medicine Specialists (FMS). These are individuals with either a degree as a Naturopathic Physician (ND) or a Medical Doctor (MD) both of whom specialize in holistic treatment of the entire person versus a particular disease in isolation from the rest of the patient and/or programs that support and encourage wellness rather than treatment only of disease or symptoms. FMS practitioners do not focus on addressing symptoms. Instead they ask Why? What is causing this illness?
     I found an on-line medical seminar addressing AI diseases. This seminar was free for the first nine days and was written and produced by respected FMS from around the world including Britain, engaged in serious, verifiable clinical research on AI diseases and the gut. I took copious notes and I found their research was checked and supported by universities and research papers published in the following: Frontiers in Immunology--one the world's top ten journals for the study, research and advancement of treatments for Immune diseases; the journal Science; Yale University; the journal Cellular and Molecular Immunology; the Oxford Academic Journal of Rheumatology; the University of Maryland School of Medicine; the journal of Gut Microbiota Research and Practice; the journal Naturopathic Doctor News & Reviews; the University of Colorado; the Journal for Integrative Practitioners; Scientific American magazine; and over fifty published research papers are available through PubMed Central which is an on-line data base of research papers on file with the National Institute of Health's U.S. National Library of Medicine.  
     All of these resources are hailing a new frontier in the treatment of AI diseases due to the recognition that all auto Immune diseases begin in our gut.  Now I am going to try and distill four months of research down for readers who are interested in this topic. This will take me more than one post!
     I could not find world wide statistics for AI diseases or for Britain but the stats for the U.S. are up from nine million in 2000 to 80 million today. In 1900 1 in every 10,000 members of the American public developed an AI disease; today it is 1 in every 250. As the majority of communicable maladies have decreased in spread, national and international public health organizations have focused their sites on non-communicable illnesses with a specific focus on AI diseases which are growing faster than any other disease in the modern era all over the world. This includes the U.S. National Center for Disease Control, The World Health Organization, and the European Parliament. Our world and all of us on it are facing a global epidemic of AI disease for which modern medicine researchers and practitioners say they have no clear idea of the cause of either AI diseases or the rise in them.  
     A lot of folks think AI diseases are peculiar, rare illnesses such as Evans Syndrome or Parry Romberg Syndrome Some folks are familiar with Lupus and Coeliac Disease, but a lot of people remain unaware that Diabetes Type 1 also known as Juvenile Diabetes is also an AI disease. (For a comprehensive list of AI diseases visit THIS web page.)
     The major diagnostic criteria for an AI disease is presence of auto antibodies (B cells in the blood stream). As a rise of B cells in patients linked to AI diseases occurred, medical researchers began asking questions. Is there something occurring that is convincing the human immune system that parts of the body are "other"? Is modern culture too healthy? Could it be the case that the immune system no longer has enough to do? Could AI diseases be caused by a rise in over-exposure to 20th and 21st century chemicals and toxins?
     In the last thirty years chemicals such as flame retardants, pesticides, herbicides, and PVCs (polyvinyl chlorides) have been used with such ubiquity that everyone on our planet is exposed to them and that includes babies in their mother's wombs even in poor third world countries and isolated cultures without the benefits of 21st century technology. Another correlation is that in 1900 the average life span was 49 years and now we live much longer. The Japanese live the longest at an average life span of 84 years with the life spans for Brits at 81 and for Americans it is 78. 
     150 million people world wide are diagnosed with AI disease every year. The latest research indicates five years before a firm diagnosis of an AI disease the  process begins to manifest itself in our bodies. Only once all clinical signs and symptoms are present and an antibody test has been done will an AI diagnosis be given. Research has found that five to ten years prior to clinical appearance there is a pro-dromal period in which the antibodies are present in a patient signaling an AI disease is developing. For modern medicine practitioners (MDs) nutrition is not taught in medical school and doctors fail to learn that food could have much to do with medicine. 
     Functional Medicine Specialists take a very long and detailed history of each patient going all the way back to birth. They look at diet, stress, exercise, work, addictions, daily habits, hours of sleep, hobbies, travel, every disease a patient has had, living conditions, family relationships, allergens, microbes, toxins, hormones, diet, and then the patient takes the antibody test. From the mined information received, an FMS will offer a medical diagnosis and begin to build a personalized therapy because we are all different. There can be 14 patients with 11 different factors inducing the same disease and FMS do not prescribe drugs to turn off symptoms or to delay or reduce them because this method of treating a disease seldom offers a cure or even a healthy reduction of disease. 
     It has been found that toxicity is the driver in the 21st century, specifically pesticides, hormones, synthetic chemicals, and artificial manure. There were 650,000 food related deaths in the U.S. last year. Functional Medicine Specialists recognize something standard medical practitioners have forgotten or are no longer taught: the secret of caring for the patient is caring for the patient. An FMS will spend an hour and half with a patient at their initial appointment and one hour each time they are seen after this. Their goal is to know each patient so thoroughly they can begin to help their patient with appropriate treatment that reduces immune over-activation rather than using pharmaceuticals to squash inflammation or totally shut off the immune system.
     One British Medical Journal study found that the three main causes of death in this country are heart disease, cancer and medical error--improper use of prescription medications. This is an indictment of the medical system which refuses to recognize doctors need to spend more time getting to know their patients, and the chronic over reliance on the idea of treat or cure the disease (not the patient) by relying on drugs. Too often these days patients are told only drugs and nothing else, can cure their disease. The United States health care system is ranked 37th worldwide for which its patients pay millions. Britain is ranked 18th and Canada 30th (France is number 1). Medicine is the only business that continues to grow despite failing its customers. No other business could continue under the same premise. The way in which a person processes drugs may do more harm than good and this is seldom taken into account. Patients are sold the big lie that "you are just getting old," and menopause is a good example of this. HRT is a pharmaceutical industry worth billions. Depression is another example of disease and dehumanization instead of looking at what a person is experiencing as part of the spectrum of normal human experience. I'll use myself as an example. My husband died 18 months ago and I am depressed. I don't need drugs to deal with my depression. It is situational and if I take the time to work through my grief my depression will lessen. This is part of the spectrum of life--not a disease for which I need to pop a pill. Now I can already hear the outraged voices indignantly calling, "I wouldn't do without with my HRT," or "I couldn't function without anti-depressives." I am not saying drugs should never be prescribed. I am saying they should not always be prescribed and this is an important distinction. 
     This over reliance on prescribing drugs to fix patients is taught in medical school. Diagnosis/prescription. An example of this is the use of chemo drugs to treat AI disease. The collateral damage to the patient is exponential as you may judge for yourself from the information I've provided previously,  as pharmaceutical companies feed off of and profit from mistreatment (and to be honest so do some doctors). I am willing to give most doctors the benefit of the doubt in saying they earnestly seek to lessen their patient's pain. Sadly too often the reverse is the outcome as one drug creates intolerable side effects so another drug is prescribed to address the side effects of the primary medication and it too has side effects for which yet another drug is prescribed and so on. I personally have known friends and family members on as many as nine different drugs, with four or five contra-indicated for one another! This is extremely common and actually shortens our life span as the dug companies rake in profits of over 100 billion annually but fail to lead patients to a healthful resolution of their medical issues. 
     Those of us who are diagnosed with an AI disease will live 26 years less than the average person because in the process of treating our symptoms, the drugs prescribed cause cancer. What limits does medicine, as it is currently practiced and we as customers of this system, fail to acknowledge? The goal of medicine should be to help us achieve a healthy life span versus longevity. Doctors should be on a journey with each of their patients and we as patients must be actively involved and responsible for doing our part. Health care practitioners are there to be "in service" to their patients. Modern medicine seems to have lost site of this.  
     Diet, lifestyle, our food supply, and how we treat our environment must change and those changes will be driven by us, not those who own the companies. Medicine is changing (not fast enough to suit me but then I am impatient when it comes to people's lives) because information is now in the hands of the people. Okay I will stop here and continue in a new post in a few days with more specific information specifically about AI disease, causes and treatment.        

Tuesday, August 28, 2018

Ground Control to Major Tom

"They that love beyond the world cannot be separated by it. For death is no more than a turning of us over from time to eternity. Death cannot kill what never dies." ~William Penn, 1644-1718; English nobleman, writer, early Quaker, and founder of the English North American colony the Province of Pennsylvania.

     The 24th of August marked 18 months since Les died. Even if I forget for a moment that Les died on the 24th of January, it still registers deep in my subconscious on the 24th of every month. I find myself depressed and listless all day until I realize some internal marker is registering the moment Les died. Death is a date on the calendar, but grief is the calendar. 
     August has been a tough and grueling month. I applied for a job with a village Post Office. The owner contacted via email and asked if I was still interested and if so, what days/times would I be available to work? I replied immediately that I needed 25 hours ideally but 20 is my minimum and I would work as many hours over 25 as was needed, every day but Sunday because the bus doesn't run to the village on Sunday. Two days later the owner called me to schedule an interview. I was really excited because I could cruise right up to this village and moor up. And the position paid £8.50 which is a good wage for this country. We discussed my traveling by bus and he said I would need to look at the bus schedule and figure out the earliest I could arrive and the latest I could work in the evenings.  I replied that I had already done so and I could be there as early as 8:05 and work until 5:30 PM six days a week. He sounded duly impressed and made me think that barring any unforeseen issue which might pop up in my face-to-face interview which was scheduled for a Wednesday afternoon, the job was mine. Wednesday arrived and I was heading out the door for the bus when the phone rang. It was the owner of the village Post Office. After a long discussion with his wife they decided to cancel my interview because I relied on the bus. As far as she was concerned that me an unreliable employee. I was gutted! I have filled out and submitted thirty eight job applications since last November and I've heard back on two of them. I sat down and sobbed. Then I picked  myself up and kept on moving forward...
     I was offered the opportunity of receiving a free three month pass to the Nantwich Leisure Centre. I was looking forward to swimming in the outdoor brine pool several times a week. I grew up swimming in Alaskan lakes and I am very strong swimmer. I put my left shoulder out of place and I have been seeing a local osteopath. She agreed that swimming would be good to build up my muscle strength. I went swimming for the first time last Tuesday and sadly it will be my last time. Sarcoidosis has scarred my lungs, making them far more brittle than I realized. I could not get my breath while swimming laps, even slowly. It is a terrible feeling, struggling for a breath. All of my life I have had very strong lungs owing to seven years of choir participation in junior high and high school.  
     Last week I lost Les' boat keys. I use his keys as my duplicate set and I keep them clipped to the curtain rod by the back steps. But for some reason the day I went swimming I decided to bring them with me in my back pack.  My keys are on a blue carabiner clip and clipped to my back pack. I didn't even realize I had lost his keys until the entire week had passed that is how out of it I was. I was truly destroyed by the thought I had lost Les' keys and didn't even realize it. He died with those keys in his hands and they are precious to me. He carried them in his right trouser pocket everywhere--even to America. I spent all weekend trudging back through Nantwich to every place I had been, asking if anyone had found a set of keys on a purple carbiner clip. Nope. I wracked my brain trying to remember exactly the last time I saw Les' keys. It all seemed blurry to me because after two months of feeling better, the Crohns disease flared up again after I ate one gluten free brown rice and black sesame seed cracker with soy. Apparently the soy sauce used in the crackers was NOT gluten free and that is all it took to send me right back to dysfunctional colon and pain so intense I wanted to lie down and die. 
     Meanwhile between bouts of vomiting and sleeping, I tore the boat apart looking for Les' keys. He always said "Look in all the usual places and if you don't find what you are looking for then look everywhere else." So I did. The boat looked like a hurricane went through it. I looked in every pair of trousers, socks. coat and sweater pocket; every drawer, bag, box, and cupboard was emptied. I even looked in the fridge and freezer. Nothing. Between feeling ill enough to die, and depressed over losing Les' keys, I have been a basket case and I gave up and spent two days in bed. I also did a lot of looking back at my life for the past two years. I have been drowning in guilt at not saving Les' life. I felt as though I gave up on trying to save him once we were given the diagnosis of terminal bone sarcoma. I think if I hadn't been so overwhelmed and exhausted by fighting for his life for three years without a break, combined with recovering from one knee replacement surgery and going in to a second surgery and the meds required for the pain, which shut me off emotionally, I would have fought harder to keep Les alive. As I laid in our bed I realized that Les loved me totally, deeply, completely, and he would never have countenanced my feelings of guilt or inadequacy. He knew I loved him deeply, totally and completely too and I did the best I could at the time; I would have given my life for his in a heartbeat. All that guilt gilded mourning drained away and I was left with a sense of profound peace. 
     This morning I slowly put the boat back together. As I was looking through the wardrobe I found a large framed picture of Les that friends had given me at Les' memorial service. I decided to hang it on the wall at the end of our bed. After a cup of chamomile tea for breakfast I checked in with family on FaceBook and posted a remembrance to Valerie, whose birthday was yesterday. I grew cold this evening and I decided to get a bag of coal down off the roof. I haven't done that since March. I always wear the same gloves and Les' grey zip front sweatshirt cardigan when dealing with coal bags as they are dirty. I dug into the very back of the coat cupboard by the front door for Les' cardigan and removed it from its hook...and inside one of the pockets I had already checked, were his keys. 
     All this time I have been waiting for a sign from Les; a sound, a song, a symbol, a dream, but I got nothing. The lack of a sign from Les has tested my personal belief system deeply. I have known since I was a small child that there is more on either side of our lives on earth because I have memories from before I was born and my own mother confirmed this for me much to her own shock. I am the weird one in the family who hears the voices of the deceased at the moment they pass, or I meet them in my dreams and then learn when I wake that they have died. I have had my own close meetings with death in this life so for there to be silence from Les' soul has been yet another trial to endure as I relentlessly questioned everything I believe, my past experiences surrounding death, and the depth of Les' love for me.
     I realize now that the profound intensity of my grief formed a wall between his soul and mine. Yes, I still grieve for him and I always will, but now I can remember him with joy. I can talk to him and say his name and not feel like someone is cutting out my heart without anesthetic. Now, our relationship is similar to that which we had before Les died. I know without doubt that this is what we have both been waiting for.

NB Valerie & Steam Train by Les Biggs

NB Valerie & Steam Train by Les Biggs