Tuesday, November 29, 2016

The Winner of the Chicken Little Drawing is...

The winner of the Chicken Little Pincushion Drawing is Judith Forbes. Judith please be in touch with me to select your free Chicken Little!  Thank you all for entering and if you would like a Chicken Little Pincushion, almost all are now listed in my Etsy shop (just double click on Little House Home Arts under Etsy to the right of this blog and you will be taken directly to my Etsy shop. If you prefer another as seen in my blog, you may leave me a note requesting which one you prefer and if it is available, I would be happy to sell it to you.  Thank you all again for entering this drawing! There were thirty-eight that left comments, and I assigned each a number in the order that they entered and then had my computer select a random number between 1 and 38! I hope you will return to my website as I plan to post more free drawings in the future! I so appreciate your interest in my creations. Congratulations to Judith Forbes!

Thursday, November 24, 2016

Free Chicken Little Pincushion Drawing extended...

Please note that the Free Chicken Little Pincushion Drawing will be held on Tuesday, November 29th, instead of November 26th as some people have had problems leaving a message or some are only able to leave a message anonymously.  If this is a problem for you, you may either leave me a message on my Etsy store site or contact me through email at jmcvermont@comcast.net.  Just leave your comment there.

Please know that I have been checking my web site daily and hand recording names of any who have signed up, thus far, but don't hesitate to re-sign up if you are in doubt as to your entry for this drawing I will post the winner of the drawing on November 30th on my blog at www.littlehousehomearts.blogspot.com so check back then to see if you won. Happy Thanksgiving to you all! Sincerely, Jane McMillen

Thursday, November 17, 2016

Free Chicken Little Pincushion Drawing

My  silly chicken pincushions took on a life of their own at Maria Wulf's Open House this last October. I made ten and none came home at the end of the sale.  So I made more, thirty-three to be exact and perhaps just in time for a perfect gift for the person in your life or perhaps even for your yourself? I now call them my Chicken Little Pincushions or soft sculpture art. We did note that when photographed they seemed to all have their mouths open and we think this is because they are "busy chatting with each other".

They gave me pause to reflect following the election. I know that I was very engaged emotionally in this election season, so much so that the night of the returns I half-jokingly prepared a "suicide prevention kit" as I really didn't think my candidate had a chance of winning though I realized too that I rarely pick the winner ever. I am used to losing, and in fact, I think that on many fronts I might well be considered "a real loser". Despite two college degrees, I never chose my careers according to their ability to make money but chose instead jobs that were more about dedication to my principals, and serving others. As professions they were "good for women's work" (in my day), but then along came my health issues, necessitating me to cut back my hours, eliminate chances of promotions and eventually caused me to take permanent leave from my work.

I learned that even when more money was needed to support myself and my family, I was better able to do this by taking on cottage industry work on the side, the sort that Mike Rowe features on his shows. While they weren't "dirty jobs" per se, they were the tedious and boring sorts, the kinds that no one else wanted to do. Even then,we still seemed only to make ends meet. I do have to own that my husband and I chose to live in the beautiful rural countryside of Vermont instead of sticking to city life where jobs were higher pay and more plentiful. We literally "chose" the harder way for ourselves to succeed monetarily, but then we followed our hearts and not money.

Looking back on my life, I see now the value of those choices.We have had a quality of life that we wouldn't have found in the city though we rarely "had things go our way". We grew so used to not being "winners", that despite our quality of life increasing, our monetary success actually decreased.

So  it seemed only natural that election night I simply prepared myself for the worst outcome for my chosen candidate and prepared a thermos of hot, comforting Chamomile tea, stuffed several pieces of chocolate in a baggie to take with me when I escaped the inevitable negative election returns on TV to run to our bedroom and avoid watching him lose. I would retire early, pull the covers over my head to read the next book in my series of feel-good quilting novels and shut out the real world! One way or another I would make it through this long night and comfort myself until I got up the next morning to face the reality of losing once again!

Fortunately, I had received an order on line that I worked to put together, while I had the TV tuned into the start of the election returns. I was even avoiding taking a real interest in watching them, and only half-listened. As I sat at my computer sending information to my customer, I was prepared and ready for the slide to begin when I would charge to our bedroom, escape into another world, and sip hot tea and eat chocolate..  I was so "chicken" that I worked to remain detached, though I had not missed anything during the entire political campaign.

I couldn't believe what was happening as my chosen candidate didn't seem to bottom out...and his chances of winning increased.  I even changed channels to get the other side's perspective, determined to not let me get my hopes up. I couldn't allow myself to even consider the possibility of my candidate winning! To make a long story short, I didn't flip the TV off until about two in the morning and my hot tea became merely a beverage as I started paying more attention. My suicide prevention plan would apparently not be needed this time.

The next day I was truly feeling bad for my candidate's opponent and her followers, many of whom were my friends, though it still wasn't real to me there hadn't been some big mistake and that our victory would still be up-ended? This is how sure I was that my candidate would not win!

This writing isn't about winning however, but rather about losing...I didn't realize until later when I saw the other side struggling with their feelings about the election that we are all "chickens" and become like Chicken Littles, and I mean this in the kindest of ways. We all seem to do all sorts of "catastrophe-sizing" about the future when things don't go according to our plans. I also began to realize how many good things I have learned about losing. Life goes on, however devastating our loss may be, and let me be frank, I have had some devastating losses (family members suffering and dying from MS, Parkinsons, and cancer; my daughters and I being diagnosed with late stage Lyme Disease, my youngest also born with a congenital chest deformity that made her chest grow inward during her adolescent years, crowding her heart and lessening her breathing capacity). Whatever the loss,we sought comfort, grieved, picked ourselves up, learned whatever we needed to learn and carried on to put our life back together again as best as we could.

There are, of course, different stages of grief that we all go through as we gather the courage to face the difficult and begin again. Many things in life are beyond our control and often more important than winning is how we lose. Losing, I found, is just as much a "part of life" as winning and despite it or perhaps because of it, we are blessed!

We gained faith during times of loss and learned that whatever we faced, God remained and still remains with us, helping us each step of the way and the more we practiced our faith during such times, the easier it became to trust that whatever happens, the next day comes, even when the skies are overcast. Who, however, in their right mind volunteers to lose something we hold dear, just to get stronger?   We are all a bit "chicken" and though Chicken Little actually suffered more from from anxiety, his fears were real to him. I figure that we are all Chicken Littles at heart. We are easily shaken and crushed, but picking ourselves up and going on "is life".

Though I wasn't disappointed by the election, my chosen candidate was really a substitute for the first candidate I had chosen that had lost in the primaries. I also realized that winning is not permanent, and losing will visit me again in the future! For those of you that are grieving and are in pain about this election, know that most certainly your side will win again. None of this is permanent.

In honor of all who voted and dared to hope for one candidate or another, I want to offer you a chance to win a drawing for a free give-away Chicken Little.  They are whimsical little pincushions or soft sculpture art that reminds us that we are all Chicken Littles and hopefully should you win one, it will make you smile and prepare to win again. It is my dream that both sides can contribute to making America the strong nation that will benefit us all!

To win one of these Chicken Littles, please leave your name in the comment section following this blog. A drawing will be held two days after Thanksgiving and the winner announced. Thank you for participating and hopefully you will be the winner.  If not they will be reasonably priced and for sale in my Etsy shop shortly after Thanksgiving! May you all have a wonderful Thanksgiving. We are indeed privileged to live in the USA and am grateful for all of you that follow my blog!

Our final craft sale for this year will be at The Lakes Region Farmer's Market Christmas Fair, at Poultney High School Gym, Poultney, Vermont on the Friday and Saturday following Thanksgiving, from 10 a.m. to 4 p.m.  We hope you will come and see us there.

Wednesday, November 9, 2016

Little House at Vermont Farmer's Fall Holiday Fair this Saturday, November 12th, 2016!

Little House will be at Vermont Farmer's Fall Holiday Fair Saturday, at the Holiday Inn in Rutland, Vermont, November 12th,  9:00 a.m. to 4:00 p.m. We will be joining many artisans and hope to see you there!  Here is a preview of some of our wares. Not pictured are our very popular fleece socks. They are come in all sizes, colors and patterned fabrics (300+ pairs)! Hope to see you there!

Pre set-up before the sale. Empty spot will be a stack of Hannah's aprons.

A sampling of my pincushions and other wool items.

No one can say that our booth isn't colorful!

Hannah's little giraffe stuffed toys for babies.

We love whimsical items...They make us smile!

Christmas gifts. Not shown are patchwork Christmas stockings.

 Hannah's fun display! Spaces to be filled with aprons and finger puppets!

New 2-toned felted wool pincushions stuffed with crushed walnut shell filling.
New Penny-rug-style felted wool pincushions with walnut shell filling.

Friday, October 28, 2016

About the Artist Who Didn't Allow Herself to be Photographed

Cutting out more chicken pincushions while watching politics on TV!
Bodies, beaks, combs and wings, for my new chicken pincushions.
I have been living in the fast lane and am having a hard time keeping up with everything at Little House! The 2016 Bedlam Farm Open House and Craft Sale over Columbus Day Weekend was altogether too successful! I am not complaining mind you, but in only a matter of a week, I had become a video star overnight (fullmoonfiberart.com) and my pincushions seem to have become part of a mad buying frenzy, thanks to Maria's Wulf's marketing skills! I had to readjust my plan of quilting, thinking that my crafts were sewn for the season and quickly cut out more batches of my whimsical chicken pincushions. I will feature them in my sales in November and December and sell them in my Etsy shop as well!
My first chicken pincushions sold out almost before Maria's sale started.

My new two toned wool pincushions for this year!

Some new penny rug and biscornu pincushions to add to my collection!

My flower pot pincushions, a favorite item, all hand sewn.
Maria's short video of me showing my pincushions, broke a near life-long ban of avoiding all photographs of me, though fortunately, the video showed more of my pincushions than of my face, still the psychological ramifications of being "exposed to the public" were mind-boggling! Unlike The Emperor That Wore No Clothes, I felt exposed! Mind you, at the advice of a successful artist, I posted a picture of me in my craft booth a few years ago. However, instead of the life-sized picture of me doing my work that was recommended, my picture was not only merely school-sized but a real second grade school picture of me and with it my daughter's statement about me as an artist. It is all silly and whimsical and made me laugh but is factual and true! It reads:

"Jane makes a mean corn chowder, and her homemade bread is to die for.

Her favorite part of the creative process is cutting.  She has been known to spend weeks, cutting out new projects.

Jane writes every email in Lucinda Script.

Jane refuses to sit for a new portrait.  Something about having a bad experience in her childhood. While she has aged a little, and her haircut has changed, her youthful outlook on life and style has not.

Jane's Netflix Queue is full of historic dramas.  She is a sucker for dramatic productions with full-blown costumes and really bleak circumstances.

Jane's heroes include Elizabeth Bennet, Louisa May Alcott and Charles Krauthammer."
Aged a little, my haircut changed, but NOT my youthful outlook and style.


Maria's video was a total shock! It was spontaneous and I didn't even have time to object and she clearly didn't know about my strong objections on having my picture taken and only wanted to feature me and my artwork!  After receiving a message from a very dear friend that I have corresponded with for a few years now, I am trying to embrace my own image and so, my dear readers, you may need to prepare for selfies to follow? (or NOT!)

I am at last accepting that I am fast approaching 70 years old and am no longer meant to look like I am twenty! I am a step-grandparent now and am embracing my new rather frumpy image of the old woman that has been staring back at me from mirrors. I not only objected to all photographs for years, but have only enough mirrors in the house to check for ugly green specks of broccoli in my teeth?!
Standing in the rain, a frumpy old woman but I still have a youthful outlook!

Maria is a wonder to be sure, and her video was hugely successful in selling pincushions and after the following feedback from a very dear on-line friend, it brought about some inner healing as well!

"So, now I have to tell you about something that really meant a lot to me this week. I have a friend who has become so dear to me. She is wise in the best of ways, compassionate, gives of herself sacrificially even though it is especially costly for her due to health problems, and has a sense of humor, even in the midst of trials, that always brings a smile. I’ve never met her except through her words. Well, this week I got to see her for the first time…on Maria’s video, did you guess??? And Jane, I was thrilled! I could listen to your voice for hours- you have such a soft, lilting voice that is so comforting to hear, and so young! Yes, some people who are young sound old, but you have a very youthful voice. I know what you’ve said, and I truly do understand how you feel about your appearance because as I shared, I really dislike what I see in the mirror. So I’m not chiding you at all, but you are so lovely! I could go into detail, but I don’t want you to feel embarrassed or think I’m using flattery. I will say I have always coveted a nose like you possess :). It made me so happy to get to see you and hear you speak. Your pincushions are beautiful, but so is their creator. Even without makeup or clean hair, as you described your condition that day!"

This is the most beautiful note ever, and I so appreciated knowing that others, like me, judge a person by their heart and not their appearance, though I am my own worst critic and I do think my friend does flatter me in both inner spirit and outward appearance!

The past few weeks have indeed been eventful, for this was not the only personal challenge I had to confront! I unintentionally upset a friend by sending her a video that was political, though I did not mean it as such and added a note indicating to ignore the political statements and focus only on the medical assessment of the doctor, and sent it out "en mass" to friends. It was a video of Hillary being carried to her van, as well as other clips showing various and alarming visible signs of some sort of serious illness.

I was shocked to see that Hillary appeared to stiffen, unable to walk, and the doctor's assessment concurred with my own. I didn't think I saw a fainting episode as reported, which I have observed many times during my days as a nurse, but rather something that I would describe as a "neurological event" instead. Fainting seems more of a "limp-ening" experience and not a stiffening...and I had a brother that died early of a neurological disease and my mother though dying much older, had a neurological disease as well and I am familiar with bodies that refuse to function as their brain directs! I was shocked and meant only to inform my friends "on both sides of the aisle".

I learned the hard way that I was naive to NOT think that in this ultra polarized political world someone would consider it a personal jab at their chosen candidate, especially when they know of my differing political views. Sadly my friend would not hear of my good intentions! I felt like I was experiencing a bit of deja-vue when I saw video clips documenting Hillary's health condition. No matter which candidate I choose to vote for, I feel sadness when I see someone having signs of a potential serious medical illness.

I have been defending myself since this conflict. My intentions define me, though I know that I fall short of the mark when it comes to living them. I consider myself to be a truly caring and sensitive friend, and while I whole-heartedly apologized to her and meant it, instead of altering my behavior to keep myself socially appropriate and mute about politics, I am rebelliously re-posting some informative posts about the presidential candidates on facebook. I recalled that somewhere in my youth I was made fun of and shamed for my passionate beliefs and I am now insisting on reclaiming my interior as well as my exterior! I will not be shamed for my political beliefs and will intentionally speak or communicate on facebook about them boldly now though inside I am still timid and scared, as it may well mean that I have no friends left after this election!

I can make fun of my chosen candidate as well as myself, and after my friend tried to shame me for what I didn't do, I decided to insist on having political banter at home, "no matter what"!  I am not only claiming my own political voice, though I will spare my readers of my strong political rants, but I am insisting that all of us at Little House be able to have discourse about politics without shooting or shaming each other. I now realize that any form of shaming wounds a person, making them feel like that are indeed "deplorable" for their beliefs! Whatever happened to the psychology of "I'm OK, You're OK" and America's tolerance for differing views, no matter how heartfelt we are about our own!

This is America and I am taking back my overweight and unhealthy self-image hoping that others besides my friend see the good heart within, and am accepting my own political voice and allowing others to do the same! Forget social and political correctness! I am well-read on the candidates, and have opinions as to which best represents me. I claim my right of being me and expressing myself and allowing others to do the same!

God bless Amendment Number One and with it Number Two as well, for while I never owned a gun, lest it get used against me, I want the right to protect myself from governments that have gone crazy and I think we are almost there!! I have indeed been very busy embracing the old woman that stares back at me in photos and mirrors as I stitch away and prepare for sales ahead. I am trying to prepare for the election as well, as disappointment often follows them as I don't seem to pick the winning candidate, ever! Could it be that I am jinxing my candidate by my support? I certainly hope not!

I love, love, love organized messes!

Well, almost organized!

New pincushion bodies waiting to be filled with crushed walnut shell filling.

New fruit and chicken pincushions in process!


Regarding my upcoming sales, stay tuned for my notices of their dates, times and locations. I will be at two sales in November and possibly another in December!!.... And do check out my Etsy shop which will soon have my whimsical chicken pincushions along with other new items for your holiday shopping pleasure!

Last but not least...my daughter, Hannah McMillen, is joining me on creating items for Little House! Don't miss her aprons, soft toys, knit baby hats and finger puppets! She has long been a co-creator-in-crime.  She is the designer of my website. business logos and designs and loves to do my booth displays. Her business skills exceed my own and she enjoys working my sales. She is a professional artist by trade and is working to expand our offerings at Little House with her own new creations!

My husband, Tom remains our silent partner, and is driver, hauler, banker, salesman, and chief-supporter of Little House!

Thank you for your interest and support of Little House's Etsy Store. Please feel free to give us feedback at any time!We enjoy hearing from you. Jane McMillen

*This blog is dedicated to my friend, D.M. for sending me such healing feedback and also to Maria Wulf! It is clear that I need to accept the older and less healthy woman that I am turning into. Despite my denial and resistance to growing older, I am not getting any younger, though I continue to work at that! I blame my physical failures on my battle with Lyme disease, but perhaps psychological denial is at the heart of them all? I think I learned in nursing school that we usually peak physically at twenty one years and after that it is all downhill! Perhaps I am "normal"?! As one friend wisely advised me some time ago,"Get over it!" and that is what I am planning to do!

Friday, September 30, 2016

Craft Shows, Politics and Toilets

A sneak peek at my new felted wool chicken pincushions.
At  last a chance to breathe and write, they are synonymous to me. Too many things to do lately! Here we are, right on schedule or so I think and then our upstair's toilet and adjoining pipe let loose! It is an experience that demonstrated that my husband doesn't have the temperament to be president! Moans, groans and too many expletives spewed forth from the upstairs bathroom!
Some of my new 2-toned wool pincushions.

Then a trip out to buy a new toilet on the night of the first presidential debate proved that it was a good thing that my husband wasn't planning on watching it! He has bigger real-life issues to deal with, and he doesn't seem to mind that he's just disqualified himself to be a write-in contender in a year where a write-in candidate just might win! Taking care of Little House is job enough, and being at war with a flooding bathroom threw him into overload along with being our Secretary of Finance! "This is what we have savings for," I assured him though little did I know then that I would soon be advising him to call a plumber! "Likely that is what Trump would do", I thought to myself, not saying it out loud. My husband hates politics!

Lyme Disease and a stroke have earned me the privilege of being cared for, though today I am assigned to "the bucket brigade".  It's the least I can do as I take my leisure.  It's a self-appointed PJ Day for me, along with finishing my pincushions. Upcoming craft sales will be here soon.  My first will be at Jon Katz and Maria Wulf's Bedlam Farm Open House, October 8th and 9th, 2502 State Route 22, just five minutes north of the town of Cambridge, New York. It has become an annual fall event and a chance to be outdoors on Columbus Day Weekend in what will hopefully be peak fall colors and comfortable weather. It will be a nice gathering featuring farm animals, poetry readings, craft show and demonstrations.  Red will be there to herd sheep as well as greet guests along with Maria's dog, Fate.                  .

My new flower pot pincushions.
I offer my pincushions and display ware and Maria and Jon offer their animals, and bit of countryside to share with  an interesting collection of friends, near and far along with all sorts of writers and artists gathered to share their talents and pleasure. We will enjoy this fun event with them and by then we will be celebrating our new plumbing as well! Indeed there is much to look forward to!

New penny rug pincushions.
My husband and I just talked about taking a quick escape after their Open House to go to the New Hampshire /Maine coastline to catch a bit of relaxation at the ocean, a seafood dinner and visit one of my favorite quilt shops, perchance to sneak a peek at a long arm quilting machine. I have a couple of quilting set-ups of my own for now... and likely forever! My mother instilled in me a love for good, old-fashioned, hand-done needlework and quilting, which will likely save us thousands of dollars, though I still dream of a fancy long-arm quilting machine, seafood dinners and functioning toilets!!

Life is good and I look forward to another craft sale season. We will have only two more craft shows after Maria's, both scheduled in November and I will keep you all posted as to their whereabouts and times. And there will soon be more of my wares listed in Little House's Etsy Shop. I am learning that balance in life is everything-- a bit of craft work and sales and back to quilting, quilting and still more quilting.  That is balance to a quilter! You will note that I didn't list housecleaning or cooking! I have two quilts to finish before the end of the year, God-willing and no more catastrophes befall us.

A utility quilt to finish soon and 100+ pair of fleece socks yet to tag for sales.
This quilt is now quilted  but the back-side dedication  is still left to do.
Appliqued dedication to go on back side of friendship quilt.

There will be lots of political news as I keep my fingers busy stitching.  Election drama is proving to be more exciting than old-fashioned jousting tournaments and likely equal in blood-letting! America deserves the best leadership and what a grueling battle our contestants go through to prove themselves worthy. It is not a sport for the faint-hearted, but then I have to think how much talent it takes to be sure the plumbing in the big White House is working, not to speak of the plumbing of the country and the wide world as well. As for Little House, we will content ourselves to simply vote for the candidate of our choice and support him or her with our prayers!

I do ask myself "who in their right mind" would sign up for the job of being president of the U.S.A.  But as I thought that, clarity of mind appeared-- no one "in their right mind" would! Insanity mixed with a bit of humor is good at all levels of leadership! Perhaps I should run for president? My Lyme brain and experiences managing crises are but perhaps "preparation for what is yet to come", and besides, I think I have the right temperament! Keeping my cool when those about me are losing theirs? Tell me, is there a U.S. Department of Sanitation with expert plumbers to clean up world-sized messes or would such "cleaner-upers" be under the Department of Interior instead? I will have to research that answer, but wait... don't all presidents need some on-the-job-training?

It is not by accident that our toilet broke the night of the first presidential campaign of 2016. I think it was providential! I had never before considered my potential talents that might make me suitable for the presidency: stitching-up everything in sight, keeping up with current events on TV and managing home crises, including big messes, and possessing a little insanity and humor...I could well be the winning write-in candidate for this election, with a little support of loyal blog readers and quilters everywhere...Hmmm?

Think of the quilt shows that could be hosted in the White House, and international shows with quilting ambassadors gathered from all countries..."Love and Peace Through Quilting" would indeed "make America great again"...and all other countries too!!?? So if you are still wondering who to vote for, consider your options and perhaps write my name in that blank spot. It is time for love and peace to reign again and perhaps I could arrange free quilting lessons to whoever wants to learn? Wouldn't we all feel more secure if there were more quilts in the world to pull up and over our heads "when the going gets tough"?
My mother's candle-wicking quilt to be finished next year.
A pen and ink "Comfort-Her" quilt block. Next year to be put together.

Another block, 49 in all completed for my "Comfort-Her"!

Friday, September 2, 2016

Experiences that Keep on Giving

Our world was recently derailed. My husband couldn't see well and went to see our ophthalmologist and in the middle of his appointment his doctor summoned his partner in to see what he saw. Not only did my husband have one of the biggest floaters the doctor had ever seen, he and his partner saw abnormal cells clustered in both of his eyes.  He was referred to a retinal specialist two hours away from us and his appointment scheduled only one week later, though it was postponed for another week before he was actually seen. My daughter took him to this appointment while I stayed behind to care for her two step-children. He needed a driver and I rarely drive that far.

I read about abnormal cells in eyes on the internet and made myself stop, as it was just too scary!! I hoped that his appointment being postponed meant that his problems might not be so urgent and I busied myself with sewing for my upcoming craft sales to make time pass faster.

The specialist confirmed the presence of abnormal cells and recommended a vitrectomy, a removal of the vitreous, in this case primarily for the purpose of  having these cells tested, but also to remove his floaters. The good news was that for many patients, removing the gelatinous fluid in the vitreous and refilling it with a salt solution removes floaters and improves eye sight; the bad news was that the abnormal cells could be cancer, though other inflammatory diseases produce floaters and abnormal cells as well.  We tried to focus on the positive, but it was a long six day wait for his surgery and we thought even more time would be necessary before we would get test results on the abnormal cells.

I began to realize that our medical histories have a way of re-cycling, especially if they are traumatic and what medical urgencies aren't? Our past experiences keep on giving and this is both bad and good. I sent my questions with my daughter when she taxied my husband to see the specialist. My husband's initial diagnosis was vitritis . Any medical word ending in "itis" means inflammation and being The Queen of Inflammation, I questioned if this could be caused by late-stage Lyme Disease as it causes inflammations everywhere as well as uveitis, an eye disease that can cause serious damage to any or all parts of the eye and includes vitritis, that only affects the vitreous.

Fortunately, his doctors all reported that the front and back of my husband's eyes looked to be OK. Lyme, despite its seriousness would be better than cancer, I reasoned, like reasoning had anything to do with what was actually happening in my husband's eyes! I was "reaching" as anything would be better than cancer! "Bargaining" is often one of the first stages of grief, and I seemed to be right there! We were all in shock about his eye issues and it was hard to imagine that our lives might be changed forever, or NOT. depending on the results of the tests they would run on these cells.

The retinal specialist wondered how me having Lyme had anything to do with my husband and told my daughter Lyme wasn't transmittable to another person. My daughter, having Chronic Lyme knew different.  She replied that she and her sister had acquired it from me in utero, and that it is thought to be potentially sexually transmitted as well, and why not, as it is caused by a spirochete, similar to syphilis! The specialist asked her to cite medical references to her knowledge but who carries such references in their head, especially as Lyme Disease causes memory gliches, especially details involving names and dates. He let her know that such facts were likely "bad medical science" and added that Chronic Lyme Disease is a very controversial topic, and that if he did test for Lyme and it was positive, he would be sure to refer my husband to a certified disease specialist who works under the CDC!

We are aware that the CDC doesn't believe that Chronic Lyme Disease exists, as they don't believe that patients who have had acute Lyme Disease and been treated still have active infection, but rather that they have gone on to develop an autoimmune disease that will no longer respond to treatment designed to kill off active infection. Doctors who believe in Chronic Lyme are called Lyme-literate doctors and they believe that if symptoms persist, it is likely due to active infection.There are studies that show this to be true, though I am no better than my daughter at citing references.

There was much to do to be ready for his surgery. We would get hotel reservations and travel the evening before, as surgery was to be first thing in the morning and we would stay until after he had his follow-up appointment the next morning to keep from having to commute the distance! His surgery would be done on an out-patient basis. My husband and daughter needed to take time off from their respective work and my husband needed to get a pre-op physical, pre-registered at the hospital, check with his insurance to be sure no prior authorization was needed and have a phone conference with the anesthesiologist's nurse. Our animals would also need care arranged for them. I was less busy and so I appointed myself the task of worrying, no matter that I know how useless that can be!!  Being a nurse, I find that my way of dealing with serious medical issues is to gather information and cross bridges before I come to them.  If I can cope with the worst, then I am well-prepared to deal with whatever I need to deal with. I do admit this does cause some unnecessary angst!  Did I mention that my husband is not the easiest of patients to care for? I simply added that to my worry list! I was then busier than either my husband or daughter!

Past experience, I have found to be a very strong teacher indeed! We have questioned whether or not my husband has Lyme before, but to date he has only been tested for Lyme through a hospital lab not as reputable and sensitive like the special Lyme testing laboratory, Igenex. Biopsies of affected tissues can be even more diagnostic than usual testing, as the usual Lyme tests can produce less than reliable results, especially with patients who have had Lyme Disease long enough that their immune system and responses are already damaged. Biopsies can offer an advantage, but I do have a way of forgetting that I am NOT the doctor!

From prior experience, we know that medical doctors are often limited in what they know about Lyme Disease, though I find it interesting that doctors, while unknowledgeable often are negatively biased and believe what the CDC has told them, never questioning that this information might be inaccurate. My daughter told me about the surgeon's response to my concern and I didn't look forward to future encounters with a medical professional that is not only NOT Lyme-literate, but one that is so negatively biased.

This specialist however came highly recommended by our trusted ophthalmologist and had seen my husband years earlier and it was also clear that there was some urgency to this situation. We didn't have time, nor the money to find another specialist, and we decided that any future questions would be made without reference to "the controversial topic of Lyme Disease".

Keeping my mouth shut would be a tall order for me when I have such strong opinions, based on my own experiences and those of my children.  I went thirty-eight years without a diagnosis and proper treatment and my kids were in their late teens before they were diagnosed. Sadly, our bodies had incurred much permanent damage before receiving treatment. Our medical issues and those of my children would have been much less had my past doctors been aware, tested and treated us for Lyme much earlier in the course of our illnesses. I am a loud and strong and very verbal advocate for Lyme Disease awareness and widespread education!  It is a disease much more prevalent than the Zika or West Nile Viruses and the disability and mortality rate more significant, though sadly its research less funded! Invisible diseases I have learned glean less notoriety!

My husband was called by the anesthesiology  department for an intake interview only days before surgery. My daughter and husband had indicated that my husband was allergic to sedatives and pain killers but my husband wasn't certain that they understood that they actually cause him to become apneic (to stop breathing)! I decided that perhaps it would be wise for my husband to be sure that he got his medical records from our local hospital regarding his last surgery to "drive home" this issue and prevent it from recurring!  Again past medical experiences were  re-cycling, and we were determined to use this information in a positive way! Doctor-to-doctor communication of facts can speak loudest. This is common nurse knowledge of my yester-years and this was indeed important enough to communicate most clearly!

Being concerned that everyone be "on the same page" we  also planned to verbally share this information with everyone before surgery including the doctor and anesthesiologist! All heard and the eye surgeon responded confidently explaining that he would "go light" on medication and asked my husband to trust that he would be kept awake, but safe and comfortable throughout surgery and promised to NOT over-medicate him. In turn, he added that my husband needed to communicate should he feel any pain. My husband's anxiety strangely decreased so much that prior to surgery he dozed without medication. He knew that my daughter and I were on his team and that I would do his worrying for him!! The doctor and hospital staff all did their part to perfection. The eye surgeon even pre-marked his eye to be operated on. Surgery in a large institution is anything but "holistic", but safe-guards were built into their system to prevent any errors! The transfers of care were done with open communication and their care was efficient and effective and the results were all good!

We learned from this experience that our processing was what was most important. Re-cycling all of our past medical experiences, we carefully sorted and talked about what needed to be communicated, and realized later that this contributed to the comfort and success of his surgery.  Possible complications were avoided!

By the morning after, the surgeon had the pathology report to give us.  There was NO cancer! It is likely that an inflammatory illness damaged my husband's eyes and my concerns about possibly acquired Lyme Disease were legitimate though his eye surgeon had his biases. He humbly admitted that he is NOT an expert on Lyme, and he and the pathologist decided Chronic Lyme was an issue best left to my husband's doctor to further explore. He indicated that often they never discover why the inflammation occurred and clearly without testing, I could understand why this was a common occurrence!

In the medical world when they don't know what causes something, they say it is of "unknown etiology". We did find out that this surgeon's main concern was cancer and the news of my husband not having that was a huge relief! I did feel bad that the opportunity to further test for Lyme Disease was not taken. My youngest daughter had spirochetes cultured from skin lesions she had, and my lyme was actually diagnosed through tests on my urine where lyme antibodies were found. If however, my husband had been tested for Lyme and it and found, this doctor would have been responsible to refer him to for further treatment and likely that would have been to "a certified CDC disease specialist" as he had indicated.  The irony of the situation, was that the specialist referred this issue back to my husband's primary care doctor, who just happens to be my previous Lyme-literate doctor.  This is the same doctor who was made to drop his Chronic Lyme Disease patients and no longer treat lyme disease (we think under threat of his medical license).

We are under no illusions that his own primary care doctor will further test or treat my husband for Chronic Lyme. He is at least very knowledgeable about Lyme Disease and is likely the best doctor to make decisions regarding my husband's future care. There is, of course, the possibility that my husband has some other inflammatory disease instead.

It is a fact that Chronic Lyme Disease has gotten a "bad rap" here in Vermont and elsewhere. My thinking is NOT paranoid. For those of us who have Chronic Lyme, we know that it both exists and lives-on in thousands of patients. While the CDC has denied this disease's presence, their denial doesn't eliminate this disease! It is also part of my medical experience that I have lost the best doctor I ever had, when they made him literally "dump" his Chronic Lyme patients and stop treating them.

He was made an example of in this state, and it does seem apparent that the CDC has been hard at work to be sure to "educate" other doctors that this disease does NOT exist. Their decision has made finding appropriate care very difficult to be sure and added much insult to injury for patients to be told that their illness was all in their heads, though their symptoms were often successfully abated when treated with long-term antibiotics by such Lyme-Literate doctors that respect that short-term treatment for Lyme is often inadequate!

It is a fact that our illness often does afflict our brains, as I found out when an MRI was done following my stroke. My brain is peppered with lesions that were there prior to my stroke. Likely my treatment had attacked the active infection in one of them causing much swelling and ischemia (lack of blood flow) around it. The swelling was treated and thank goodness the effects of my stroke were reversed.

While psychiatric care can be helpful, make no mistake, it alone doesn't treat an ongoing infection that may also affect the brain. Research has shown that patients treated with limited antibiotics often continue to have an active, and ongoing Lyme infection. Proper treatment is tricky business. Lyme Disease manifests itself in three different forms, two of which surround themselves with a protein that makes it hard to penetrate and kill off. Other forms of treatment are then needed in order to effectively "get at" and kill-off these mutated forms.

For those of us who have Lyme, we know it to be an illness that "keeps on giving". It often creates more medical problems, not only for the patient but can also be passed on to their off-spring in utero and/or to their spouses sexually.As patients we can feel its effect or the effects of our immune system trying to fight it off. It can "mess with our heads" through on-going infection or neurological damage. It can make us less tolerant of stresses or even normal activity and exercise and there are medical reasons for our heightened reactions. Living with it means that we are constantly challenged to take count of our energies both before and after events as their effects can produce delayed negative responses as well.

Being our own advocates whether it be Lyme Disease or any other illness that we are coping with, means that we ask questions and be actively involved. Those of us with serious chronic illness live in an alternative reality and will indeed surprise our medical care providers with questions and concerns "out of the ordinary". It is also important that we communicate our sensitivities as we are often more vulnerable than others undergoing similar procedures.

I also learned through this event that it is important that each doctor offer their own specific expertise and that we respect both what they offer and don't offer. While this doctor reasoned that the tests run on the fluid removed from my husband's vitreous are expensive enough that he felt other more common tests for Lyme Disease would be less costly, we know how hard it is to have opportunities to locate areas affected and have them biopsied. He later said that he didn't have expertise in Lyme Disease. I can only hope that he learned a bit about Chronic Lyme Disease in considering our questions. I reasoned later that if he had tested my husband and referred my husband to a "certified disease specialist under the CDC"  treatment might well have been systemic steroidal anti-inflammatories which would effectively suppress inflammation, but would also suppress his body's ability to fight any active infection, if present, whereas a Lyme-literate doctor would likely treat with antibiotics as well as other treatments to get at the mutated forms of  a possible active Lyme infection instead.

I do find it sad that our medical system is this political and that the patients are the ones caught in the middle,but it is a reality that I live with every day as a victim of Lyme Disease. We are, however, armed with knowledge and that is indeed powerful. Our surgeon at least showed our concerns respect by adding them to the medical report that will go to my husband's primary care doctor.  I am sure that the surgeon's life is simplified by effectively side-stepping or avoiding this "black hole" in medicine, whether that is his intent or not.  Lyme Disease is controversial and sadly Lyme will continue to be denied as the medical community is not about to confront the controversy that exists.  Doctors in this state, at least, are better off personally and professionally if they avoid any testing or treatingthis disease!

(For those readers that question my paranoia regarding Lyme Disease and its treatment, I respectfully suggest they read Plague by Judy Mikovits.  It is a true life story about the politics involved in controversial medical diagnoses of ME/ Chronic Fatigue Syndrome, Autism and other such autoimmune diseases (including Lyme Disease) and their  possible links to retroviruses and immunizations.  If you don't think politics are involved in medicine, think again! My doctor was luckier than some in that he is still practicing medicine with some limits imposed on him, whereas many have been permanently put out of their careers, "plagued" with ongoing lawsuits to threaten them, or have mysteriously and suddenly been found dead. Their personal and/or professional losses have become very real losses to their patients as well! Going without their care is a great loss indeed! Many thanks to those Lyme-literate doctors who dare take the risk to themselves professionally when they treat us!)