Saturday, April 15, 2017

Happy Easter, Happy Passover, Happy Spring!

Wishing you all a Happy Easter, Passover and Spring! Here are pictures from our annual Easter Egg Dying Party, a very messy but fun and creative time! We try new techniques every year, but have so much fun that we forget to take pictures until near the end of the party.  Everyone leaves with an assortment of fun and different dyed eggs.  We even do egg swapping and share an Easter gift or two!

We always start with a delicious dinner and end with an even better dessert. Sorry, no pictures taken of our delicious taco dinner with tiramisu dessert! This year my daughter, Hannah hosted this fun event and hands down, she is the best cook ever!
These are some of the fashion egg colors of the year (or not?)!

A close up!

Drying...Waiting to be fully finished.

Perhaps this end of the table had a better assortment of dyes?!

Some preferred softer colors!

Some mixed their colors up leaving more blue and mud colors?

Green, blue and brown ones here!

She picked this egg to model! Which is "the good egg" here?

Very artistic!

Process is everything, this picture showing the near final outcome!

Painting using a tablet of dye (earlier in process).

Egg painting obsession here (earliest picture).

Almost  done here!

Wednesday, April 12, 2017

Writing my Own Obituary-- Very Sic Humor!

Humorous headstone in Key West Cemetery--credit to Trip Advisor*
A few weeks ago I came down with a cold. This is unusual for me, for I have not had an acute illness since I started the Marshall Protocol, over eight years ago. Eliminating Vitamin D by using medication and diet revved up my immune system and not getting acute illnesses was the most positive effect of this treatment... until I discontinued it!

I wrote to a friend that it had to be a manifestation of God's sic humor, that after years of working to kill off Lyme's superbugs, I feared I would succumb to a mere "killer cold".  He enjoyed my sic humor and got the message that it would be an insult to my warrior-like spirit and suggested that I practice writing my own trial obituaries to be sure that what I most treasured about myself, not be lost when I die of something simple and ordinary! He then gave me a example of the fun irony awaiting such writings and wrote, "weakened by decades of fighting Lyme disease, Jane slipped on the ice and cracked her head open" and then added, "I hope you don't mind my macabre humor." 

I didn't mind his humor at all, and it made me laugh! I am clearly not as ready to die as I had thought, for as yet my obituary is not written! But I appreciated that when I have worked so hard to fight the good fight, it will take a special obituary to sum up  my heroic defiance in the face of Chronic Lyme Disease! Sadly my whole persona has been caught up in my battle with this illness! Perhaps I should hire him to write it? It would at least put a smile on everyone's face to read it and that by itself would be a positive and fun message to leave with my friends and family when I go?!

Years ago, I wrote and delivered my dad's eulogy and am now questioning if I dwarfed his life in the words that I wrote about him, though his final illness was short when compared to his moderately long and productive life so my eulogy of him wasn't all about his fight against his final illness! Nonetheless, how important final words about a person can be!

I just wrote to a friend about my younger brother who died when he was thirty-three from pneumonia, I realized as I wrote that, I just stripped him of the glory of his battle against an atypical and severe MS that had also become the hallmark of his life's journey. He bravely died with bed sores to his bones, and no one could ignore that his character had been formed by his sweet and non-complaining spirit as he took whatever time was left him in his short life! Naming the cause of his death as pneumonia didn't capture his courage and fortitude and I then added detail to what I wrote. and proclaimed his good and courageous attitude and heart as he faced eight years of being tormented by a horrible disease that never let up! Context is everything!

In a six year correspondence with another who has a severe and chronic illness like my own, we often laugh about what isn't funny in our lives and recently we have talked about the irony that we are never seen as the heroines by our family members or friends who are sick of sharing the daily ups and downs of our illnesses. It is those surrounding us that instead get the sort of credit we think we deserve as they put up with us with patience and fortitude!

Many who live with invisible illnesses face this irony! We muster the faith, only to look like the fragile and mortal beings that we are...and our faith, courage and humor are often over-looked despite the fact that we often face diseases that suck the very needed energy to deal with each single day. Some think that the answer would be to find a Dr. Kevorkian to hasten our dying, put us out of our misery and give a welcome relief to our care-takers, but no, we "bravely" carry on instead, though some like me, whine as well!  We preciously cling to every bit of life that is remaining in us, no matter the effort it may take to get dressed on some days! We can be teased and even abused by friends that dare to tell us that "we just aren't fun anymore!"  There is more irony still that when we are moms or nurses, or in some other caring position, we are not even seen as sick, and are expected to perform the roles we always did, no matter how we feel!

The friend who advised that I practice writing sample obituaries, wrote, "we certainly want to credit your Lyme with your future death, regardless of the exact cause" and added that T.S. Eliot once said that "our world will end, not with a bang, but with a wimper"! He understood the insult of our life ending without drama and fanfare after defiantly giving the middle finger to an horrific life-robbing disease for so many years! I have beat the odds, at least so far!

Sic humor is truly the strength of those of us who beat back The Grim Reaper, no matter that he does get us all in the end! In the middle of my cold, I watched The Walking Dead series, and laughed about how my breathing sounded like their's and that I didn't look too different either! I put myself into all those scenes of giving "the walking dead" their final release by stabbing them through their eye sockets!!

Mind you, no one with a serious illness is out looking for sympathy, but kindness is always welcome and, I add, that respect for the battle we fight is most appreciated. Some are granted good health, no matter what, while others of us may do all the right things with all the wrong results!!  As the photograph of the tombstone of the man who at least made his final point that "he really was sick" suggests, even being believed and affirmed is kind!

Restraining from giving obvious advice that diminishes our own intelligence is also kind. We are sick but not stupid! We have tried a zillion times to get well and it is clear that those that offer such simple advice are clueless as to how complicated a difficult disease can be!  I can't tell you how many times, "dieting and exercise" have been recommended...Duh!! Even doctors make inane recommendations, and if they don't understand, who will? Fortunately research is showing at last that exercise begets exhaustion versus creating energy for those that are ill! Fatigue surrounding our illnesses means that our bodies are NOT functioning normally! Duh again!

The irony of asking to take care of another when you aren't well is also unkind, or asking that you donate money when you bluntly, but honestly tell the solicitor that you are disabled, on a limited pension, and unable to afford the out-of-pocket expenses that our chronic conditions necessitate! They are clueless and heartless as they persist to squeeze out our last dollar by decreasing their request by five or ten dollars and continue to to push!  Sadly, I often have apocalyptic thoughts for unkind or unsympathetic "friends, family and such solicitors" that if I only had a wand such that I could grant them perhaps a month or two of living with an incurable disease to wake their hearts of stone, though they would likely reap the get well cards, flowers, balloons and boxes of chocolate that don't come to chronic malingerers anymore, if ever?

I do plan to register my complaints to God if I get to heaven, though likely he has heard such complaints before. Holy Scriptures tell us God's answer might be like his response to Job, "I am God and you aren't!!"...and then I wonder if He sometimes laughs, after all, He is most likely the King of Sic Humor?

I have heard that Christ actually had a very good sense of humor, and so I hope he will appreciate my own, though I truly want to believe that His response is to come running, administer hugs, share my tears, apply  balm and healing miracles, or at least come with genuine sympathy and kindness and then perhaps tell a really good joke to at least make me laugh! Scripture also says that some are healed and some are not. I imagine myself to be the one that He commands to get up and walk, and instead of doing so, simply lies there wondering about his sanity? It really isn't for us to make the decisions as to whether we get well or not, despite our positive attitudes, but merely do the best that we can do with what we have.

Meanwhile for those supporting others with chronic illnesses, I do hope that you will listen and acknowledge their health issues, whether they suffer in silence or are more loud about it, like myself! Appreciate that while you may dread being around those that suffer and are tired of the "same old thing",  that we are tired of it as well. Invisible illnesses are very real and may in fact be more debilitating and life threatening than visible ones.

Mockery and unkindnesses are very cruel,  along with offering superficial and false reassurances that negate our experiences. Spare us simple advice. We have already tried everything we know and picked the brains of those most knowledgeable already! Recommended treatments are too often ineffective and can even exhaust and worsen our conditions. There are no easy solutions or we would be well already! And if you have good health express gratitude for it, as it is truly a gift that is not equally given to everyone!

For those of you who suffer with invisible or visible chronic illnesses and must depend on others, know that there are many who share your journey and that no matter who around you "doesn't get it", many of us understand completely!...We see the courage and bravery within, the silent heroes and heroines inside those that courageously take each day! Hang in there as I believe that we have a great deal to teach those that take their health for granted! Keep your faith and persevere and never forget to nurture and keep your humor too, no matter how sic it might be! Humor keeps our perspective and is indeed a valuable treasure!

Tuesday, April 4, 2017

One Finished and a Whole Bucket List to Go!

Stand back and don't look too closely and my quilt looks pretty good
Finished at last, my own 9 patch, 9 patch quilt made from a collection of materials that a friend sent to me. Her mother, like all good sewers, went to her grave with many fabric left over! It is one of three of my first machine quilted quilts and I cannot lie, it was pretty discouraging. I had no idea how much work Quilt-As-You-Go Quilts can be.  Yes, I am still whining about NOT having a big quilting machine but nearing seventy years old, I have to wonder about whether or not it is worthwhile to invest in a pricey big table quilting machine, besides which where would I put it? I would be glad to give it my bed space, but then, I have to consider my husband, who already claims that his house has turned into a sewing and quilting studio!!

I realized some time ago that "finished is better than perfect!", but recently I have realized that at best I fit into the "beginner category" and that I will likely never produce prize-winning quilts!  This was and remains a very humbling realization  that wounds my quilter's pride! My quilts are lessons to me and I am continuing to make them all just a little bit different, so as to find ways to overcome my shortcomings. Navigating a large quilt on a small home machine is not as easy as some of those blue ribbon-winning quilt-makers make it look!

To quilt large quilts on a small home machine, sometimes the quilter does so by breaking them into smaller sections to quilt and then joining the sections. They put sections together by using "joining seams" where you stitch the front and back separately.  The front is simply seamed together like sewing any other seams with right sides together. To use the "quilt-as-you-go" technique, you have to carefully trim your batting so it lays flat over the front seam and then fold under and hand-stitch the back seam. If you are quilting "stitch-in-the ditch", which is quilting in, or right next to the seam, you will find that most often the seam on the front and the one on the back don't match, and so as you sew your stitch-in-the-ditch quilt seam on the front side of your quilt you often are left with quilt stitches on the back side that don't come close to being next to the seam. You then cover this imperfect quilted seam by sewing on "fake" sashing strips by hand to cover this quilting on the back side.
Back side with hand-appliqued "fake" sashings to cover the joining seams.

The work involved is amazing for joining seams have two individual seams to sew, and then another to quilt next to the seam and then hand-stitching cover strips on both sides of the joining seam on the back side, making five seams for every one joining seam...Yowie!! That is a lot of sewing, and all so you can quilt faster by machine than by hand?? NOT so sure about that!?....I think I have just added years for each quilt waiting to be machine quilted, and I was already wondering if I would live long enough to finish them all! No wonder I call it "my bucket list of quilts", for I am sure to kick-the-bucket after all the years it will take to quilt them, and I don't seem to be getting faster either!!
Fake sashing strips cover the less-than-perfect back quilting stitches.

Fake-sashing strip is sewn on by hand and covers my many sewing sins!

In the end you want your quilting lines to look continuous if you pick a quilting pattern that is quilted to the edges of your blocks. But for me, a beginner, this meant picking out some stitches along the edge to make room for joining seams.  A very big whoops on my part!  This is not a quilt suitable for a quilt show, though it will likely keep us warm while we sleep, if I just remember to shut the lights off, so as to focus on sleep and not my imperfect quilting!

I am learning that no matter whether my quilts win contests or not, there is value in every quilt! My hand tied comforters are treasured items among my relatives and some are still waiting for one of my less than perfect, but completed comforters! Beauty is in the eye of the beholder and so I will find those that will treasure one my home-made comforters for its lofty warmth and will think fondly of me for sending them one and appreciate my colorful patchwork done to suit them in their personal colors. They are not looking for perfection but enjoy receiving something tangible and appreciate that it was stitched with love, despite my frustration in all its imperfections! I will not, however, give up on challenging myself to create more perfect machine or hand-quilted quilts as well!

I am also learning that children's quilts past-due are not so fashionable when they no longer fit the child that grew up too fast and is now an adult! Favorite patterns and colors can change during a lifetime and so quilts need to be timely as well, especially when they are now shared with a mate!

This quilt taught me that the overall look is what scrap quilts are all about, sometimes less than coordinated fabrics can be charming when mixed altogether. It also taught me to try to relax as I quilt, as hanging on too tight can create stitches that are too small and have a tendency to pop when we gently tug on it to cover our shoulders! Regular weight thread may also NOT be sufficient for the weight of the quilt. I do worry that despite how many seams are in this quilt, I am not sure how long it will stay quilted, though likely, with care, it will last our lifetime?

It is the process that counts and maybe when I have sewn many quilts, each designed to correct the previous quilt's errors, I just might create a show-worthy quilt? I will content myself for now to simply enjoy the process using varied designs and fabrics, and not focus on winning any ribbons!

I will continue to look for a quilting machine that will expedite my quilting, and hope to find one that will capitalize on my limited talents! Of course it must be at the right price, simple to operate and have a long enough sewing arm to allow for bigger pieces to be quilted!  I will continue to go to quilt shows and dream of still more quilts to make.  It isn't about having the right number for our beds, but rather about the creativity and love of fabrics!  Did I ever mention that my name is Jane and I am a fabricaholic and a full-feldged member of Fabricaholic Anonymous! It is true and so I can expect a bucket list that will never grow shorter!

Monday, March 27, 2017

Where did I go?

The first of many UFO's to be completed.
Even the internet is wondering if I am dead or alive as are my readers unless they have given up on me already? My blogs have dwindled to infrequent to almost non-existent! Behind the scenes here at Little House, however I have been busier than ever!! I never stop writing, photographing, sewing, reading and expanding my skills with mostly positive results. Addressing the ever-changing needs of our household has, however, required me to cut back some activities for a time.

When I started Little House Home Arts, I would sometimes get stressed as I wanted to be sure that Little House's various activities kept "in balance".  Sewing, writing, taking photographs, marketing and posting blogs kept me very busy as I developed new creations. My oldest daughter and "partner in crime" used to remind me that I could take it at my pace, fitting it to my time and desire, as after all, Little House was my own creation.

As I continue to face various challenges in my life, I have recently taken her advice and have taken an unplanned extended vacation from posting blogs. Being eager to get my UFO's completed, and realizing that my old-fashioned ways of hand-quilting needed to expand to include some machine quilting as well, I have also taken time to learn new skills! It has been an exciting new venture!

I continue to shop and invest in materials and patterns, and am always working to better accommodate for my different styles of sewing and expanding collections. Although my presence on line has been shrinking, Little House is doing quite the opposite.

Initially Little House originated when I had to take a medical retirement from my professional work as a registered nurse. I went into extensive treatment for Chronic Lyme Disease and Little House became a side-line hobby-business, keeping me ever focused on my health regimens as I kept  my mind and fingers busy sewing and creating. My goals have not changed, though my medical issues have.
Sic humor "keeps me keeping on". (credit to Trip Advisor*and CP).
Other changes at Little House have been occurring as well, and some have been addressed in my blogs, not the least of which is that my eldest daughter has gotten together with a nice young widower with three children and so my husband and I are continuing to grow into being step grand-parents as well as adjusting to our empty nest. My daughter and her new family have recently purchased a new home and their many renovations involved a community of friends and family, though my contributions mostly consisted of thoughts and ideas, worry and prayers! There are many now now that take credit for her new home's transformation!
Sarah Bear is finding her way into the heart of my new step-grandchild.
Our step grand-daughter's first of two rooms finished! Very nice A.W.!
With our daughter and cook gone, I not only returned to cooking but have returned to the world of preparing a NO SUGAR, no-yeast, no alcohol diet despite my belief that sugar IS the largest section on the base of the food pyramid and doesn't " a spoonful of sugar make the medicine go down?" ...And doesn't everything taste better with a little champagne or wine?

No sugar, no yeast, no alcohol diet means lots of fresh veggies!

I am writing this blog to tell you where I went...and while I wasn't far away, I have traveled a good many places since my last blog. I am ever so glad to "be back" and can't wait to share with you about what is up at Little House! I will post a few pictures to give you hints and in my next few blogs, I will catch you up on what you have missed in the past couple of months!

While I am ready "to spring into spring here in Vermont", I find myself smiling as I look outside only to see that we still have winter white still covering the ground and only an occasional robin to suggest spring may be around the corner! Do return to get the full scoop on these stories and more!

Yum, not too bad! 
*credit to my friend, C. P. and Trip Advisor at   

Friday, February 3, 2017

About Chronic Lyme Disease...I think I will think again...

It is a fresh new day today following what has added up to be decades of Chronic Lyme treatment. I just completed my "doctor runs", having met with a Naturopathic Lyme doctor.  I had spent more than a week preparing what records I have and paper-clipping together notes and lab work from various doctors starting with the most recent and going backwards.

You know you're old when you have fifty years of significant medical history, numbers and bizarre diagnoses! If it wasn't my "reality", I might have hit a record for being one of the best hypochondriacs ever, and I am still wondering if I am not just one of those sort of strange psycho-sorts of people? I was so nerved up about this appointment, that I was able to orally give her my history in about an hour and a half, NOT looking at any notes. I believe it was my life's a one man play, complete with a reliving of all the drama that went with it, no doubt a sleeper for most...but rather anguishing for me and it filled almost the entire appointment. What blew me away was that instead of cutting me off, my new Chronic Lyme provider questioned me further and was busy pulling out data from my paper piles to document that it was all true! I was completely "rung out" from the experience, but must say that it was an entirely spontaneous and unrehearsed performance! I thought I had memory issues but amazed even myself!

Her ears had to be hurting and I realized in reading some of my own doctor records that I am not viewed as the brave woman I consider myself to be!  I think I expected a Golden Globe award at the end and proudly congratulated myself for my display of medical detail and memory.

My story even had twists of humor, mostly about being upset about not having pajama day holidays anymore, and getting gift cards for Christmas that I spent on what I most treasure in my life: books of all sorts, more patterns and materials and a new wardrobe of fun pajamas? I am sure that she wrote down that I have a clear investment in being ill?! I then found myself literally hobbling out totally spent and unable to process what had just happened. Had I just signed up for writing another chapter in my medical drama? I now have an appointment to meet with the nutritionist at their clinic, along with the previously scheduled PT appointment at our local hospital to work on yet another non-functioning joint...but think I will reconsider the rest.

Suddenly, how futile all lyme treatment seems to be? "A Lyme-literate provider" stands before me and instead of being impressed, my husband and I had to stop and ask ourselves whether or not I really wanted to sign up for another "snake oil"-sort-of-protocol and to what end? We know for certain that I have an inflammatory illness such that it continues to over-react in ways that continue to amaze doctors, but it seems that there is little to offer me that is any different than what I have been through before?

It didn't seem like my detailed spiel changed anything in my provider's mind. I might have taken five minutes instead and likely I would be prescribed the same course of treatment, and while their herbal preparations might be of some help, I was questioning as never before as to whether their real design is simply to help us rid ourselves of our retirement investments, so pricey all their little bottles of various potions that will need to be taken, several at a time, day after day, month after month and year after year, with no end in sight! I suddenly pictured them all being home brewed in someone's soup pots? I think my "Lyme cure seeking" is at an end?  

I remember my friend congratulating me on getting back to "mainstream medicine" and I had to scratch my head as to what I was doing in an alternative care provider's office and then had to remind myself that this is the only sort of place that now treats "chronic Lyme Disease". I didn't even get a legitimate blood pressure taken on my arm, but rather a little wrist band, and it was off the charts. My husband later reported that his eye specialist had used a similar device on him and his BP of 54/32 assured me that my BP of 177/100 was likely equally as unreliable, though I admitted to feeling like I was going to have yet another stroke!? I am always annoyed when nurses don't know that different sized arms get different sized cuffs or bands to take an accurate using the same cuff on everyone's wrist is likely bogus as well, though admittedly my wrist is less fat than the rest of my arm!!

I wondered where all this cynicism comes from? I think it started a few months ago, when I managed to raise my Vitamin D and then lost all my gains when my stored iron level needed to be corrected by "a blood donation", though no one wants my blood with too much iron! I suddenly found myself depressed. Lack of Vitamin D does that! I can hardly stand myself and pity my my poor husband having to live with my funk! Clearly I am not getting enough quilting therapy!? or sunshine?

I am questioning the seven year alternative therapy that I am still recovering from and now there is talk of more treatment to come? The only test for chronic lyme after initial testing is done, runs $750 and I take it that it isn't even that reliable? An offer of a new course of treatment is the easiest test and if you "herx", you still have lyme?

I had just inquired about whether or not a "herxheimer"/ "herx" reaction is just a fancy word for "experiencing a chemical sensitivity/ allergy/ or side effect"? My provider shook her head as when it comes to my last treatment protocol that might well have been the case?  But no matter as there is another protocol all ready to take its place, with still more possible herxing, as when treatment kills off lyme bacteria, it supposedly creates a toxic response. It is subjective at best, and I want real science now, and not be a guinea pig any longer!

I felt like I improved dramatically with the last protocol, but have spent years of my life being sick from such treatments?  My mind was spinning trying to understand all that was happening. Thousands of dollars are spent by people like me that want to feel better and I couldn't help but question as to when "living and dying" are to be the natural course of events? I have been so busy trying to survive that questions pertaining to "quality of life" aren't discussed. Perhaps it was time to just "move on"?

No, I am not slitting my wrists...just starting over, or should I say continuing on being "my own doctor" and will pick out of everything that has been recommended, what might make me healthier and leave the rest behind! To assume I am ill without really any measure of wellness or sickness but only my presence there and willingness to pay out my husband's life savings and send him back to the grind-stone for his retirement years must mean that I want an expensive treatment for an illness for which there is no cure? Being my own doctor, nurse and advocate, I have now just reached my own diagnosis...I AM CRAZY for sure!!

One of the best and most comforting of doctors is my hematologist/cancer doctor who sends me into the world to eat and enjoy life and he will then take the excessive stored-up iron out of my blood, by simply removing some of it. He tells me that within a couple of days, my bones will recreate my blood minus the extra iron.  It is treatment, but not a cure for storing too much iron, and he smiles and tells me, "My condition is easy to fix!" I don't even have to see him, just drop by the lab to have my blood checked as he orders. He will call me back if I need to come in, have a bag drawn to throw away and there is NO Herxing! I actually feel better! Who wouldn't feel better with a little less iron bogging them down?!

I do tease him that he isn't just taking the bad stuff but also the good as well, as my Vitamin D disappears. "Take Vitamin D supplements!" he says. "It is another easy fix!" He believes in making people feel good, unlike lyme doctors whose treatment makes you feel sick...and to think I went through twelve years of it, to only sign up for more?? "Think again!" will be my response...

I think it is time to sign up for a ballet class, and instead of waltzing through life like one of my friends, I think I will hang onto the bar as I do some glissades and end with an eleve and grande jete! I will of course put on my toe shoes to do this along with my ankle splints first!

Now back to bed for a while to continue recovering from all these big revelations. I called a friend of mine who has particularly strong faith and told her that I was following her example of believing that God answers all prayers...and it is time to believe that they have been answered and simply claim them!...Why not proceed with my life with this positive attitude?

When doctors dismiss the benefits of a previous treatment, but then again, here I am visiting her, perhaps expecting a special potion or several? Treating what seems to be a non-curable illness doesn't make sense to me unless I have discomfort that I can't tolerate, in which case I will seek palliative care.  I will seek such a specialist only to see if they have found a way to test for what ails me and meanwhile wait for research to confirm that something works on the bugs that reside in me, while I live out the rest of my days to the fullest!....

This is indeed a full 360 degree turn around to my way of thinking re chronic lyme disease. Supposedly if you manifest symptoms you have an active infection that needs treatment and yet there is no respect for what treatment has already been done. With no test or proof, they are convinced that I have more lyme bugs to be killed. Did I really receive years of treatment only for the purpose of recycling such treatments that bring me down and make me feel sicker? I see now that believing in Lyme-literate doctors is simply a way of making a big financial investment in the hope in this treatment or another, but when they are quick to tell me that there is always more to treat, especially at big bucks, I do have to wonder about their "gig".

There is a sucker around every corner perhaps, but I have been there and done that, and now I am with the CDC...Are Lyme-literate doctors there to simply take my money and give me potions to treat what is not treatable? I think my investments in quilting materials might be equally as healing if not more so, and in the end I will have something to show for it?

I am doing well-enough. I can quilt and while I would like to swim and do more physically, perhaps I will content myself with what I can still do and stretch to do more as I can. I have hope, hope in God and the strength he has given me to cope with such an illness. Living as happily as I can and counting myself lucky to have the time that I have had. Indeed, some aren't so lucky!!

I do pray that someday there will be research into this baffling illness. Why does the medical community give up without trying? They don't do that for cancer patients,  but honest feedback is what I now want...Don't give me false hope and make my family suffer more by spending their life savings and energy. I won't give up, but beyond good nutrition and exercise as my body permits and taking as good of  care of myself as I can,  I think it is time to accept what does and doesn't exist within the realm of medical care and live out my days!

I remain grateful to my family for their on-going support.  I will continue purchasing the latest books on chronic lyme treatment and remain open to medical advancements in the future, but for now paying out of pocket exorbitant prices for  potions that to date have little potential for cure seems at best a waste.

I have two children with  congenital chronic lyme and this means that I will never give up hoping and praying for research and a cure for this illness. I also know that it is at epidemic proportions in our society. I am convinced by some of my readings that it has likely become some sort of "retrovirus" that has been allowed to mutate within the research labs of our great medical system and only hope that one day, they will choose to be critical of their research, correct their mistakes and instead of sweeping them under the rug and ignoring the damage, they will indeed get serious about treating this deadly illness. None of us should have to live out such an illness without at least palliative care and medical insurance to support it.

Perhaps I will alter my decision some day to try yet another treatment for chronic lyme, though for now, I think I will at least give my Vitamin D level time to recover first and then go from there. Years ago my doctor spoke at a Lyme conference and stated that sometimes it is best to actively treat and other times, it is time to pause and build your body up? I think it is my time to take a break and see how I do.  I can always choose to gather bottles of expensive potions and become a real hypochondriac later, but hope to live a little first!

Wednesday, January 25, 2017

Celebrating Freedom

Removing a small room between the living room and dining room.
This week has been an exciting week.  My thirty-four year old daughter purchased her  first home. She will soon come out of storage after fourteen years! Ever since she outgrew her bedroom and started dispersing what she owned all over our house, she has filled up shelves in our garage, then part of a garage attic and then spilled into our shed, which is now a new and bigger one and then into a rented storage space as well.She is a collector like me.

Removing a stair case from the middle of the living room.
I remember well when I went into storage too in my young adult years and what a shock it was when my belongings were reunited under one roof, almost filling a house by the time this momentous occasion happened for me and my husband. It is interesting that I was about the same age when we purchased our first house.

Removing a TV bay and opening up this space.
We celebrated this special occasion by gathering for dinner at one of her and her boyfriend's favorite restaurants, Sushi Yoshi in Killington, Vermont. I wondered why we needed to drive so far to go out to dinner and it didn't take long to understand. Hibachi cooked food is to die for! We then got a tour of their "new" house before they started renovations the following day.

Removing a wall here to create a more spacious look.
Enjoying the freedom of elections.
It is no news to any of you that we also got a new president last week. I have looked forward to the country having new leadership. I thought it time to reign in spending and change the present health act to make it more affordable. I also wanted a safer USA as well, and think it is time to make our borders less porous and better screen who we let in, especially during these turbulent times when terrorism is occurring too often. I am stopping short of a political rant. Like everyone else, I have my own thoughts and opinions, and I respect that everyone else does too. I do hope that no matter which candidate you preferred, everyone will carry on to do their best to get along as I believe that we all care about our country and the freedoms we enjoy, including the freedom to elect our leaders.

There have been other happenings these last few weeks as well, not exactly what I would call so exciting, but certainly significant to me  and perhaps of interest to those that have been following my blogs regarding Living with Chronic Lyme Disease.  I may well have done a 360 degree change on the subject matter? There is enough happening that I will write a separate blog on this subject.  So stay tuned. I have also picked up where I left off and am on my way to finishing unfinished quilts and of course starting more, for that is what keeps me going
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Joining these adorable Mother Goose embroidered quilt blocks.
Mini quilt created to be appliqued on the back of a queen-sized memory quilt.

More pictures and blogs to come! My writer's block seems to be stay tuned!

Sunday, January 8, 2017

Starting a Fresh New Year

(from my Penny Rug Sampler quilt not yet quilted.
I have been anxiously waiting to start 2017 and put last year in the past. The final four months of 2016 were too hectic and by the time the holidays hit, I was short of the energy I needed to handle all the plans we made. I finished the holiday season doing my best to embrace and celebrate as best I could. Our gatherings were successful, though perhaps next year I will lessen my expectations and make the holidays a bit simpler? If only I remember!

2016  seemed to be an intense year! The bitter debates that preceded the election as well those after seemed to put a strain on us all. My family is as un-unified politically as the nation, and I found people weren't ready to move on! Having recently read several books written about the Civil War, I couldn't help but feel that we are experiencing political polarization like our nation has not known since those days. I know that I was and still am passionate about my beliefs and respect that others were and remain so as well, but rhetoric on-line and sometimes in-person got heated enough that many were offended, me included. I realized that many Facebook postings didn't just express differences of opinion but personally attacked people for their views and it seemed that the senders felt justified in sending such posts to those that differed. One person held me personally responsible for being a clone of my candidate, no matter that I am not, nor is anyone else. Selections were made for all sorts of reasons and it wasn't unusual that our final pick was not necessarily our first choice.

Sadly I am two friends shorter by the end of this year's election. While that doesn't sound like much, each year my friend list grows shorter without intentionally eliminating anyone for reasons other than death. It was emotionally draining and being right before the holiday season, many besides me were still "on-edge and guarded" as families gathered for holiday dinners. I love the Christmas season and genuinely did not want to miss the good energy that ebbs from it, but found myself a bit short on the "Christmas spirit" and I am hearing that I wasn't the only one.

I recently forwarded on what I considered to be a festive holiday greeting to a friend and received back a request to not send such messages. I respect anyone's wish to not receive a seemingly "impersonal" greeting, but I truly thought a cheerful message was better than spreading any of the gloom I was still feeling. I was shocked at my friend's attitude toward this simple greeting but after this, I then noted another posting on Facebook requesting that anyone that demands constant internet attention, get a puppy, and couldn't help but sense that people are burnt out on having their Facebook sites flooded, even if with simple holiday wishes.

I am the first to admit that I can be guilty of spending too many hours on the internet. Not being so fond of winter, I choose to hibernate and often communicate with others via on-line in the warmth of my own home. I also keep irregular hours when days are dark. I like to send my messages at any time and those that communicate with me can do likewise. Internet communication is easy and convenient!
(from my "Comfort Her" pen and ink quilt still in process)

I did see that Pope Francis recently announced that he supports use of such electronic devices that connect people, and if I am reading him right, he is appreciating that there are positive connections being made between people that wouldn't otherwise be happening without the use of the internet. I think he understands people like myself, who value others but for one reason or another cannot make connections as well without the internet. People are still in need of connecting with others to remain"alive" and "in touch" and I am very grateful for being able to relate in this manner, but it seems that internet communication isn't always positive.

Because I have aggravated more than one person with my internet communications, I have checked out internet etiquette to be sure that I am using it appropriately, and must admit that religious and political posts remain areas that are still considered to be best avoided. Interestingly, those that request that of others are often guilty of posting very inflammatory posts regarding both subjects, so I am not alone in sending out what I perhaps shouldn't.  While that doesn't excuse my communications regarding either of these subjects, I am noting that boundaries are changing when it comes to what is shared with others. Clearly if standards change regarding such off-limit subjects, we all need to be more tolerant and respectful of others' contrary views.

I was stunned and offended with personal feedback to me by a "friend" who let me know that my posts were not "OK" as they were not truthful whereas she apparently has a lease on The Truth. I found this arrogant at best. This person even explained that mine were laced with fake facts unsubstantiated by her own news sources? Dah! My information  sources were clearly NOT the same as my friend's and that made them wrong whereas her's were correct? I AM one that takes personal conflicts to heart, and found myself initially shutting down my communication fearing that my "friend" might be right. "Put downs" are "put downs". They sting at best, and when illness already shakes self-confidence, they can indeed be very damaging!

Sadly it shook me to the core before I realized that our two party system is alive and well and many times facts are according to what is believed and not necessarily proven by a supposedly unbiased fact checker. What is true is in the eyes of the believer. "Unbiased authority" likely resides only in heaven, as such earthly unbiased experts don't exist. I came to the conclusion, right or wrong, that perhaps my "friend" and I are NOT indeed "friends" as I had assumed.

She also let me know that I was embarrassing myself, especially when her friends see my postings? My "opinions" would show only my ignorance to her friends? I don't think that I missed the point that I embarrassed her with her friends and I was instructed that fb etiquette has it that I needed to not respond to her posts, no matter how inflammatory they were to me, though she invited me to block her posts. I believe that I was essentially told to f-off? While emailed to me privately, the pain was no less than if I had been told in person "to not embarrass her by hanging around". I learned in elementary school that this in not the way a "friend" treats a "friend".

It is no secret that I lack a few brain cells due to lyme disease and stroke, but believe me, I have many that are still functioning and I processed her message well. Rudeness and arrogance and put-downs don't take a genius brain to comprehend. Her intellectual way of telling me that my views "didn't count" came across quite clearly. Biases and well-substantiated arguments exist on both sides and on all levels. This is still America however where each is entitled to their opinion, but I do have to wonder whatever happened to tolerance and respect for another's views, no matter if they differ? The fact that each of us has a vote suggests that every person is valued and counts.

I know that I literally have "thin skin" physically and emotionally. Eradicating Vitamin D for a long term treatment has indeed left me vulnerable, though I am finding that I am not the only one that apparently is emotionally "thin skinned".  I do believe that humans at large are suffering from internet insensitivity.  I am hopeful that people don't really talk to each other in the ways that they do on-line, but judging by the daily news, I am not so sure. If others have been offended, like myself, I hope they too are making New Year's resolutions to check themselves so as to be more civil, respectful and kind in their discourse with others. Much healing is needed in our country as negative words and insults precede violent behavior and aren't we all getting sick of turning on the news and finding yet another shooting or stabbing. Peace begins with each one of us and our words can wound as well.

Years ago my husband and I sought marriage counseling when some of our ways with each other hit an all-time low.  We were taking each other for granted and needed to be reminded that what concerns one, should be a matter of concern for their partner or friend as well. Not being sensitive to each other's thoughts and concerns is NOT OK. We have "friended" certain people on line and I think we all need reminders to, in fact, "treat them as friends". Human beings are behind every message that gets sent whether it be "a forward" or "hand-written e-mail" or "personal snail-mail card". We may be tired of being so blessed with too many messages sent to us, but then "being kind" is always the appropriate response, IF we truly care about others "as friends".

If insensitivity has crept into our communications in any form, it is then time to step back and appreciate our "overload" and deal with it within our self, rather than be unkind in any way. It is too easy to "let loose" and be "sharp-tongued" and it is no less abusive regardless if it is on-line.

That is my rant for today and for the new year ahead. I had to get in touch with my own use of the internet and political posts, and quit re-posting any that would in anyway diminish another for their political views, and I hope others will do the same. We are fortunate to have freedom of speech, but l believe it is a privilege not a license, and judgement needs to precede our words. I am actively closing down posts that express intolerance. Differing views are always welcome as long as they are expressed respectfully. Putting others down for their views IS offensive. Sadly some are not open to honest, thoughtful and respectful debate and discourse without fighting "below the belt". Name calling, insults and ridicule are abusive and don't challenge thinking or make for change, but just cause others to dig their "trenches" deeper.

To not use the internet to communicate would simply close my mind and heart to issues and people that continue to fill my life with meaning and purpose. I have many new internet friends that expand my thinking and are truly invaluable supports to me and me to them. I will continue to use the internet in a way that I can keep on giving to others and send messages of appreciation to the many friends that support me. I am blessed to live during the internet age, and appreciate how much bigger my world is on its account.

I wish you all a very Happy New Year filled with meaningful communications between you, your family, neighbors and friends. Thank you all for your friendship and thoughts. I am indeed richly blessed with dear and loving friends and family and I hope and pray that each of us makes this world a safer and kinder world! I think that no one should need to buy a puppy to find a warm heart and get attention, though to be sure puppies need warm hearts and homes, families and kindness surrounding them too!  Happy 2017 everyone!