Thursday, October 31, 2013

Sleepy Hollow Cemetery

Finding ourselves at a Saturday doctor’s appointment in Concord, Massachusetts, we took the opportunity of stopping by one of my favorite “haunts”, Sleepy Hollow Cemetery. There is an Author’s Ridge there where the Alcotts, Hawthornes, Emersons and Thoreaus are all buried.  The fall season added much to this scenic landmark.


We found this site years ago as we visited the Alcott house.  Louisa May Alcott is among my very favorite authors.  Of course, Little Women, is a story that no young girl should miss reading. Doesn't everyone fall in love with Jo March, the character that most resembled Louisa in real life. Her sisters were dear too as was Marmee, their mother. Jo is the tomboy who scorches her dress standing too close to an open fire place, stains her gloves and can hardly be taken out in public for her unrefined personality and sadly turns down the beloved boy next door, Laurie and marries instead a strange older professor, that disappoints all young readers, but later delights senior readers, that appreciate that mature is a good characteristic in a man.

I then went on to read Little Men, Jo’s Boys, and Eight Cousins.  I hadn't a clue that there were more serious writings of her life as a nurse in Hospital Sketches, as well as her diary. She is a real heroine figure to me.  She lived by her pen and mind, helping her family scrape by financially by selling her stories and whatever other talents she could market.

It is only recently that it has been discovered that she wrote less-classical tales written under a pen name, lest she shame her good character as they reveal the wilder side of the “Jo” character within Louisa. These stories are filled with damsels in distress and some real villains.  There is even one about a clever and evil woman who steals the heart of everyone, getting them to fight over her while she goes off and marries the senior master of the house, the one with all the money, using her wily theatrical talents and clever brain pushing all the others out of their inheritances!

What wasn't there to love about Louisa, and with it her neighbors and friends, Ralph Waldo Emerson, Nathaniel Hawthorne and Henry David Thoreau?  It is sad to see that Walden Pond is now surrounded by residential living, hardly a place to seek to gain that sense of being at one with nature and finding oneself.

Still, as we strolled through the cemetery and took pictures, I couldn't help but listen to one woman’s rendition of this group of progressive thinkers of their day, the Transcendentalists. She described them as hospitable enough, but likely the sort that in today’s world would only be useful in being leaders of literary discussion groups, but impractical and definitely not the sort to have good jobs or be responsible.  I wanted to step up to her and remind her that she was standing on Hallowed ground, being the cemetery where my dear and kindred-spirited friend was buried. I was a person of responsible jobs and now find I fall into the other category and like myself better now than before.

All of the family plots had chain railings that were no longer effectively keeping people off the graves, except for the Hawthorns.  The chain surrounding their graves was very heavy and had even had been padlocked together. It spoke loudly to stay out of the family plot and not to tread on them, though the chain was still so low to the ground that it could be simply stepped over.

The woman’s comment was most interesting, as these thinkers and writers are the very foundation of American literature and are still being read in schools today and certainly earned respect among the writers and scholars of their day as well as ours. I couldn't help but wonder what will this arrogant woman’s legacy be when she is gone, though I loved touring the grave sites of the obscure as well. My husband  found and photographed a stone that that simply read “At Rest”, for the head stone had likely been damaged and the foot stone was now set in front of the headstone. He also found the memorial tomb of a baby whose statue is so worn that it is nameless now but still a beautiful and loving tribute to the dear little one that now, no doubt, has been reunited with its parents for another lifetime.



Emerson’s wife and daughter' tombstones were covered with a flowery rendition of their lives carefully scripted.  Their talents, more simple, needed more words that the one line epitaph on Emerson plaque on his large stone. Lidian Emerson, Ralph's wife's stone read "In her youth an unusual sense of the Diving Presence was granted her and she retain through her life the impress of that High Communion. To her children she seemed in her nature ascendancy and unquestioning courage a Queen: a Flower in elegance and delicacy.  The love and care of her husband and children was her first earthly intent, but with overflowing compassion her heart went out tot he slave, the sick and the dumb creation.  She remembered them that were in bonds as bound with them."


Ellen Tucker Emerson's epitaph read, "Her life was happy in that among the scenes of real life she wrought upon the plan that pleased her childish thought. She cherished the old Religion.  It was her guide through each day and the temple to which in solitude she withdrew.  The joy of her Father and Mother and the comfort of their last years, her love embraced the widest circle of kindred and friend.  she loved her Town. She lived the simple and hardy life of old New England, but exercised a wide and joyful hospitality and she eagerly helped others. Of a find mind, she cared more for persons than book and her faith drew out the best in those around her."

Aren't they beautiful, though it did make me wonder about his daughter's child-like mind and not being into books, though her father penned volumes. Was she of limited ability, but loved all the same and isn't it interesting that families seem to often be a rather unmatched group. Her father being an intellect and his daughter not?And his wife like an elegant and delicate flower that communed with God?

It speaks of the life in those days, not so easily taken for granted and definitely valued. And their loving tributes so different to our politically correct language of today, embracing unique differences, and definitely kinder. I liked their tributes to those they loved, finding the good in everyone and accepting and loving them just the way they were and carefully and poetically choosing the right words for the world to remember them by.

Cemeteries can tell us a lot and help us grasp as well, that we are here, but for a short time.  I always have to ask myself when I stroll through one, “Am making the most of my short life here on earth? What will be remembered about me?” I think I have some serious work to do in that department, lest my epitaph read, "a recluse that loved to sew" or  "disappointed in her careers, she closed herself off from the world and communed with Zeldie her cat" or "Wanting to be hospitable but worried about her messy house", or "loving and stingy but kind and proud of being thickly dense in bones and brain?" And I wondered if I should write my own epitaph, lest my stone read just “Mother” or “Jane, Daughter of George and Mary, Wife of Tom, Mother of Hannah and Sarah Kate, Maker of pincushions”...still what is so bad about that?,,,,perhaps a big stone could be purchased and more engraving added,  “once a nurse and teacher and died, bravely and courageously, a willing guinea pig for medical science to discover a new cure for Lyme Disease”.


Will  my kids and husband add a flowery note about their loving admiration, and bit of grief without me? Consideration needs to be given perhaps to the size of the stone to keep me in my place and not let me wander?....Lots to think about for sure, especially near Halloween and All Saints Day. We are all, after all, special saints and most of what will be written will be penned in hearts versus stones, and if not, I'd best get to saving so I can get my last words scripted carefully for future generations to ponder.


Monday, October 28, 2013

Part Thirteen: Living with Chronic Lyme Disease: a long and difficult journey

Part Thirteen: Fact or Fiction? --you decide

It is a well-known among most Lyme patients that the name of the disease came from a well-known outbreak of Lyme disease in the 1970’s in Lyme Connecticut, right across the Connecticut River from Plum Island. At that time, Plum Island was a research laboratory used to develop biochemical weapons. It was suspect that the birds from estuaries all along both sides of the river carried Lyme Disease from this research facility's outdoor animal pens that housed their animals used in their experiments to Lyme, Connecticut.

The government admitted researching and developing enhanced tic-borne illnesses as a bio-warfare weapon. Why not use Lyme and tick-borne illnesses as they are so debilitating and mystifying in the extreme?  No two Lyme patients’ diseases look the same and these bugs are elusive and hard to kill.

In other areas of the world, Lyme Disease responds differently to various treatments, such that the disease and its receptiveness to treatment varies according to where it is acquired.

This is all shocking to think that our government is involved in developing such horrific weapons, but awful weapons is what war is about.  It is even more shocking that they potentially weren't more careful in their research to prevent the spread of such an infection, but stranger things have happened.  Do your own research on the matter and you decide for yourself whether this is fact or fiction!  (to be continued...)

The illustration above is done by Hannah McMillen and the figure drawing by Sarah Kate McMillen

(*Caution: These blogs are not meant to be actual medical advice but rather meant only to empower others to face medical issues as equal partners with their medical providers and never give up questioning and exploring what alternatives may be available for conquering their illnesses.  Living life with a chronic illness is a daily challenge and it is my prayer that no one give on up living their life to the fullest extent possible.)

Friday, October 25, 2013

At Odds

Having been restricted to my house recently due to some health issues I thought it would be good to venture out and get myself to church and then take in an isle or two at the grocery store, more for the exercise than for want of anything. My outing was anything but the pleasure I expected, however.

The church was beautifully arrayed in fall colors.  Our  priest enjoys the seasons and loves to dress up the sanctuary and altar with seasonal flowers.  Today there was more: a grocer's display of food products collected across the whole front of the church.  It was grandiose and our priest was not shy about beating the breast of our generous church, boasting about how much had been collected for the local food pantry shelf. Normally, I would have added a bag of my own and reveled in the warm feeling of giving, but instead I recoiled.

I wasn't feeling like my usual self.  My health was challenging at best and we are still waiting (nine months now)  for my husband's new job to provide him the promised salary. His severance monies have run out and we are supplementing by dipping into some of our small retirement nest egg, though I really haven't been besieged with worry, like I once would have been in this situation.  I have been pretty secure with all that is and isn't happening. Perhaps I am at last trusting God.  He has done well in keeping a roof over our head and food in our bellies for enough years now that I wasn't doubt that it would all come together. The showy food display however was like a megaphone that was deafening to my heart and ears, and was a loud reminder of what I was working hard to forget. There are poor people and perhaps we will be one of them very soon!

Was I feeling that needy?  We have plenty of food at home and in fact, having to put my feet up, I am finding myself too well fed for my recent activity level. A mere corn flake for breakfast would meet my dietary needs, for as inactive as I have been!

This grandiose food display reminded me of when I worked on the psych ward at Denver General Hospital in the days of my young adulthood. The Salvation Army workers had come onto the ward and were passing out little care bags to the patients on the ward during the Christmas season.  Of course we had to remove the razors and after shave, to be sure our psych patients were kept safe.  A young teenage patient, more mentally clear than others, flashed a big grin and holding up his little gift bag said it all, "Now I really feel poor!".

This food display made me feel the same.  It reminded me that we are in financial decline.  And doesn't charity begin at home? Where were the grocery bags to go with this over-abundance of food. My pride surged in the midst of all this and I thought..."we aren't the neediest in our church, for many are on fixed incomes and scrape hard to get by"!

I felt angry.  I did not want to feel the needs that we have, nor communicate them to anyone. Was I feeling sorry for myself or perhaps feeling guilty for feeling poor when we have been so blessed and are just now beginning to feel the pinch! I found myself apologetically telling the priest as I walked out the door that I had been ill hence my absence from church, like a schoolgirl making an excuse for why I wasn't measuring up to my great potential, but my communication was muddled at best and I felt even worse for my attempt to let him know that we were hurting, but NOT for food!

I found myself writing to a friend and fellow parishioner, hoping that she would understand my feelings. She understood only that I felt bad and sent me back a note wishing me God's peace....but I had that before I went to church, didn't I? I had just written a blog about my family and how this crisis had made us stronger and tougher than ever.  We are managing OK and loving each other through all the dilemmas that come with a lay off.  We are even enjoying a heightened feeling of closeness, contentment and peace, because of the hardships.

What was I expecting and why was I so upset? I guess as much as I love beautiful, well dressed churches other recent images flashed in my brain.  My sister belongs to a small church in Denver.  Its minister works a full time job as a police officer and his make-shift church is filled with those that are returning from prison life. My sister is among them. When her apartment burnt down and her bed and belongings ruined, her minister and church were there. They collected monies to pay for motel fees until other arrangements could be made to house her and her family, already stressed from "starting their lives over again".

Being X-felons finding housing was no small deal, and one of the members of the church had a small house that they were selling.  As it hadn't sold, despite being on the market for a while, they took it off the market and rented it to my sister, and charged her and her husband what they could afford to pay versus making top dollar on rent.

Small gifts of money and wares have also been given to her and others in their church to meet various needs. My sister recently sent pictures to me, proudly showing her baptism by submersion taking place in a hot tub on the back of a truck in the parking lot of their church. I am hoping that these baptisms are seasonal and not out in the snow! Her church is anything but elegant and beautiful or perhaps even adequate by my standards. My sister doesn't ask for help.  She doesn't need to.  Her church is there for her and for each member as each is known by the minister and the other members. It is a real community of believers that are there for each other in very real ways. Their investment isn't in their church building but in its community.

I realized that I am NOT without faith in God or lack His peace I understood what was missing. Our little family and home have become a tiny little church community, supporting each other as we face our losses, be it health or income. I am amazed at the strength we have found in each other...and that is what I felt missing that night at church. I wasn't feeling like an important part of this community, like I mattered.  My absence was likely unnoticed. There was no phone call to see how I was doing physically or to ask how my husband was following the loss of his job just short of retirement.

When I had told a friend of mine about the support my sister received through her church she laughed and said, "that definitely wouldn't be our church that she belongs to!" (Though I know that our church at large has a collection for the poor that supports many outreach programs and generously so, so that I know that they are not without heart!)

I also remembered the story about a woman who always divided her portion of rations with another and when Mother Theresa was asked if they shouldn't just double this woman's portion, as she was dividing it with her friend, Mother thought carefully and replied, "No, for it is in this woman's sharing of her own portion with another that is blessing them both." Mother Teresa never lacked for wisdom.

Still another memory came to me of a comment that was made in a scripture class that I took. We had studied the early church and what it was like and we then discussed what a church should be. Our teacher commented that "if church isn't really relevant as a social institution it will die".  All of these thoughts then came together in a crystalizing moment of clarity and vision for me.

This generous gathering of food was missing the most important part--the part of actually being present person to person with the person in need. The part of offering a relationship WITH the person receiving the gift.  Perhaps we think it kind not to speak of someone's needs, but aren't they people just like us, or maybe are among us, or might even BE us? What about doing the difficult and relating to those that they are giving to, feeling their losses and sharing their pain for indeed, "but for the grace of God, go I". And then I remembered a Christmas card sent to us by one of our friends, a monk in hermitage. It was one that he had made himself on a copy machine. It pictured a pictured a sweet young Jesus child and a lamb and read, "May the peace of Christ disturb us"!

I believe that I have the peace of Christ and that is disturbing me right now. I felt a lack of love and concern for our personal needs and it hurt, though it wasn't just about our needs that hurt me.  I suddenly saw, as I hadn't wanted to before, how very removed church is from charity. We do good, but too often we don't "get involved". During the course of my very long and bizarre treatment, my friends have largely vanished, and often the ones that touted themselves to be the most Christian (from an eclectic group of various denominations) were gone the quickest. Perhaps my illness made them feel uncomfortable. They knew it was not contagious, but it was painful to be close and see it change my life.

I have strong beliefs that faith isn't a just a text book lesson.  It must be lived and this means rolling up one's sleeves and getting involved. To be converted means to change our perception of what it means to really care for others, I am far from perfect, but.I am not just talking the talk.  I took in my mother, though we weren't the best of friends at the time.  We did the difficult and learned that we couldn't expect her to change. It was us that needed to alter our ways and attitudes and clear our calendars. Caring is not a spectator sport or being a critical judge of what isn't done right.  We had to give even when it wasn't convenient or comfortable and sometimes it felt anything BUT good.  The gift, however, was all ours.  We learned to love in a way that was very deep and real and meaningful.

My friend also emailed back to me that perhaps I needed to tell the priest of my needs and NOT expect him to be "intuitive". But I think that Agape love is the business of the church and being sensitive to needs of others is what church is really about. People know that I am not well, and they also know that my husband was laid off in a bad economy where jobs aren't available to even the cream of the crop, which at 62, one is not.

It isn't that I am standing with my hand out and expecting gifts.I am NOT the neediest or sickest in my church, but I am a vital member just as everyone else is, healthy or sick and my needs and gifts are an integral part of me and to love me is to show concern and care in a total way, many times just a kind word is enough to encourage another. Sadly my church doesn't make me feel loved or cared about and that is something to indeed note.

This was an epiphany to me.  It doesn't make me less of a believer. God still lives, but He needs to live in a visible way in churches if the church is to remain a credible and meaningful institution in society.  Like the country that I love, I also love church.  It still symbolizes to me the ideal of love and kindness, and its fix is in me (and us). It isn't in church collections or even activities but rather it is in its very personal connections made with others in the world that are needing to see its light shine forth.  It is not in a politically correct aloofness but in a real and genuine caring relationship.

I am not sure how this revelation will change me.  I have taken on various active roles, within my church, and have been angry before when I was identified as a permanent giver versus one that is a giver and a taker, for that is the human condition and I feel strongly that we cannot be only givers. It should be recognized that within each of us there are both needs and gifts, times for giving and times for receiving, and it isn't a bank account where only those who have made a recent deposit that is transcribed in a ledger, can receive.  Many give anonymously or silently, as after all we are all taught that is the more correct way to give, versus making show of what we are doing, and giving for the wrong reasons.

I don't have an easy solution but "being authentically Christian" or for those who avoid religion altogether, "being an authentic kind and loving human being" must be first and foremost.  And that is not what I saw and felt. I am writing about this but will not stop here.  I will pray and continue to ponder about this schism and focus on what needs to be done about it.

I will further examine my attitude. I do not blame the priest.  He is but one person, and he is stretched to the point of delivering what he can to as many as he can and he is like the rest of us...human with needs of his own as well. I am sure he can't help but feel overwhelmed at the needs of those in his parish and feel too, his human limitation as he works to create a church and community that is teaching, supporting and loving? This dilution of service cannot be the face of the church, or it will cease to be relevant to be sure and perhaps his demonstrativeness regarding collecting food and giving to others was to make this point?

Our country has issues, as do the homes across America and it is infecting our churches as well. The solution doesn't begin with another but within myself. Only then will it change my home and my church or the place I work, and the community in which I live. I think that depersonalized bigness is part of the problem and it is only in personal smallness we humbly relate and connect with others, and only then will it affect the society at large.Giving cannot be mandated either as it must come from the converted heart. Mother Teresa talked of loving and caring about one person at a time and how her loving spread to so many, like it was contagious!

These are just some of my thoughts about being at odds with the world. My isolation has indeed affected me, and some might think my thoughts "negative".  Perhaps it is in confinement that visions come.  I profess no visionary aptitude, and so I will wait and see if the "cloud" passes. I hope at least part of it will remain for I think that this is how effective lessons come to us to make us better human beings. There is much need for love in our homes, churches, community and country and if each of us better see and know those in our community and reach out in love in whatever capacity we are able, how caring  this world would be.

Monday, October 21, 2013

Part Twelve: Living with Chronic Lyme Disease: a long and difficult journey

Part Twelve: Know What Kind of Care You Want: Giving In or Fighting On

Lyme-literate doctors do not consider most local hospital labs to have the proper equipment or expertise needed to accurately test for tick-borne illnesses. More reliable tests for Lyme Disease and its co-infections are made available through special labs such as Igenex, Mayo Clinic and others. Tests, however, don’t tell the whole picture as there can be false positives as well as false negatives and must be carefully interpreted along with presenting issues and clinical history to determine a proper diagnosis. Tick-borne illnesses can have different strains and many times tests aren't sensitive enough to detect them all, so testing is not the end-all/be-all in the Lyme world.

Lyme tests are not usually used to monitor progress during and after treatment, though I understand that some tests are being developed for this purpose. Once tested positive for Lyme, a patient may test positive for Lyme for a long time to come, depending on the state of a person's immune system and whether or not it is recognizing and producing antibodies. As yet symptoms are typically used to determine the success of treatment, but can also be tricky, as while in treatment, patients often don’t feel well.

Regarding the conflict between the two divergent views regarding whether or not Chronic Lyme Disease exists, let me say that it is the patients that ultimately suffer the consequences along with some of the more dedicated Lyme-literate doctors. Not only do doctors disagree as to how to treat patients, they fight among themselves, often working to remove the Lyme-literate doctors from practice, as they do not follow the strict guidelines of the CDC (Center of Disease Control). Long term antibiotic treatment is NOT widely accepted among all doctors despite studies that show that lyme can mutate and hide from treatment, necessitating both longer term treatment, as well as creative pulsating regimens of antibiotics (not taking them everyday)  in order to trick Borelia to come out of hiding and then attacking it more effectively. High dose IV antibiotics may also be more effective in treating persistent infections in some patients.

Some Lyme-literate doctors, to avoid scrutiny, don’t accept insurance, making effective care more expensive and even cost prohibitive for the patient and some Lyme-literate doctors have faced high legal costs that can drive them out of their private practices. Some doctors under such scrutiny choose to quit treating Lyme and other tick-borne illnesses, at a terrible cost to their patients. Recently my Lyme-literate doctor of many years was forced to drop his Chronic Lyme Consult patients by his local hospital administration and I had to search a four state region to find a doctor willing to accept my insurance and continue to oversee my “out-of-the-mainstream-treatment” right in the middle of it. This posed extra medical risk to me, for it wasn't a treatment that I could safely quit “cold turkey” even if I chose to do so!

Patients often struggle with insurance companies as well, as some refuse coverage for treatment based on the strict guidelines of the CDC. Life insurances, however recognize Chronic Lyme Disease as a very real and life threatening illness, making life insurance expensive, if available at all! Sadly government and insurance companies make decisions that were formerly made only by the patient and their doctor. The CDC is under government control and as we all know, no government office is without political influence and possible corruption.

The CDC’s strict guidelines have also limited many patients from being diagnosed with Lyme and getting proper treatment. Collective efforts are being made by various Lyme-literate associations (ILADS, likely the most well known among them) to have Chronic Lyme Disease officially recognized as an existing illness and to allow doctors to treat this illness with long term antibiotics per their medical judgment for each individual patient and different states are in process of passing legislation to protect such Lyme-literate doctors who choose to treat Chronic Lyme patients. (To be continued...)

The illustration above is done by Hannah McMillen and the figure drawing by Sarah Kate McMillen

(*Caution: These blogs are not meant to be actual medical advice but rather meant only to empower others to face medical issues as equal partners with their medical providers and never give up questioning and exploring what alternatives may be available for conquering their illnesses.  Living life with a chronic illness is a daily challenge and it is my prayer that no one give up on living their life to the fullest extent possible.)

Thursday, October 17, 2013

Grateful

I am grateful for so much, though only last night, I lay in bed unable to sleep and worried about everything.  I have learned that sometimes it is merely the darkness of the night and by morning everything looks brighter, sleep or no sleep!

My house cleaners were here today.  In only a couple of hours they have changed the bed linens, vacuumed and mopped the floors and scrubbed and polished here and there.  I do the pre-clean, with the help of my family and we try to return things to where they belong. It is a wonderful and soul-lifting experience to get rid of a few cob webs, some dust and see our little house shine, though I must admit it doesn't last long enough.  It does last long enough to think of getting back to my projects with an enthusiastic, and fresh new spirit however.

My cleaners have become my friends and we check in with each other and see where another month has taken us. Fall is here in glorious colors and plentiful harvests. It was a bit rough getting here, I have to admit. I seemed to be fighting a bad cold that was going around and then fighting some inflammation in my leg, serious enough to warrant me building a mountain of pillows in my bed and then trying to figure out how to sleep with my leg perched upon them to drain the extra fluid, likely now in my head?

But with a clean house, and the fall season in full array, I am ready for a new life. There is much sewing to be done and no time to waste! There are many hand stitches to be sewn before the holiday sales! Thank you to all my readers for your encouraging words and I hope that you will enjoy browsing through my Etsy Shop. I will be posting wares every few days, so keep watching for gifts that might suit even the most difficult to shop for.

With a renewed and grateful spirit, I am back to some serious sewing--but not too serious with a foot still demanding some care. Sometimes I think it was easier having small children to care for than caring for a body that goes "on the blink" at the most inconvenient times.  I do have a card that reads,"If you don't take care of your body, where will you live?" . It makes an excellent point, and just like my house that takes maintenance, so does my body!  Balance can be precarious, when, like a kid, playing too hard to stop, I go at my sewing and writing and leave the cobwebs for a "natural Halloween decor"! How grateful I am for such fun "work" and a clean space to do it in, and in such a beautiful season in this land of the Gods, Vermont! Hopefully, my leg will come off it's hallowed pillow mountain soon and do what legs are meant to do!

Monday, October 14, 2013

Part Eleven: Living with Chronic Lyme Disease: a long and difficult journey

Part Eleven: Treatment of Chronic Lyme Divides the Medical Community

The next part of my journey involved treatment for me and my kids. Sadly, my doctor was closing her private practice, though she said that she would have referred me to another doctor anyway, for she didn't feel she had the expertise to treat me and my children for Lyme. I had already made an appointment at a tertiary medical center with an Infectious Disease doctor, but she cautioned me NOT to do this and referred me to another holistic doctor who had much expertise in treating Lyme.

I was soon to learn that there are two different schools of thought regarding Lyme treatment.  Mainstream doctors follow the Center of Disease Control (CDC) guidelines for reporting cases of Lyme Disease to the Department of Infectious Disease.  This guideline strictly adheres to certain criteria being present in order to officially diagnose a patient with Lyme Disease and are equally as specific regarding what that treatment should entail.  These guidelines are disputed by “Lyme-literate doctors” who have found that many patients have Lyme but don’t exhibit all the characteristics thought typical of early stage Lyme.

The CDC also denies that there is such a thing as Chronic Lyme Disease, and instead believe that some patients with ongoing symptoms suffer not from an ongoing infection but have developed an autoimmune disease instead. Doctors that treat according to the CDC guidelines customarily prescribe antibiotics (usually Doxycycline) for a short time and any symptoms that persist after treatment are usually treated with palliative meds as opposed to long term antibiotics.

The other "Lyme-literate" school of thought is that ongoing symptoms of Lyme means ongoing infection.  In the Lyme world these doctors are known as “Lyme-literate” doctors.  Like veterinarians, they believe that as long as symptoms persist, antibiotic treatment is warranted to kill off the ongoing infection. They aren't simple in their assessments of patients.  They also assess the patient’s overall health as well as the functioning of their immune system, to be sure that the patient can tolerate long term antibiotic treatment. Sometimes it is necessary to make a patient healthier before starting to attack the infection, for this infection is not an easy one to kill off, especially after it has invaded many systems in the body. Unfortunately this takes very little time for this nasty beast reproduces quickly.

Lyme-literate doctors believe that in order for a patient to improve, their infection needs to be addressed. Longer antibiotic treatment, they feel will increase the chances for conquering the infection, which alone will improve the health of the patient. This is their goal. Many a patient, including myself, have been successfully treated and over time serious and debilitating symptoms have lessened or been eradicated.

It is also common knowledge that co-infections go along with Lyme Disease.  Many of these infections may make a patient equally as sick, if not more so.  When symptoms persist even after treatment, Lyme-literate doctors will test and address possible co-infections, if not done at the same time as treating Borrellia (lyme infection). (to be continued....)

The illustration above is done by Hannah McMillen and the figure drawing by Sarah Kate McMillen

(*Caution: These blogs are not meant to be actual medical advice but rather meant only to empower others to face medical issues as equal partners with their medical providers and never give up questioning and exploring what alternatives may be available for conquering their illnesses.  Living life with a chronic illness is a daily challenge and it is my prayer that no one give up on living their life to the fullest extent possible.)

Sunday, October 13, 2013

America, The Land of the Free and the Home of the Brave!

I have promised my daughter some time ago that I would not get political on my blog, besides which I am hating the divisiveness that is going on in our country right now.  The more I hear about what will and won't be covered in the shutdowns the more I am sickened by how our country is changing and not for the better. Somehow what is most important is being forgotten and this is hardly the America I know.

I will avoid being political, but I will not avoid being patriotic.  These past few years have been particularly difficult.  My husband lost his job of over twenty-two years in January, and the job market is anything but kind to someone that is but a few years from retirement. Our country is suffering from high unemployment, and natural disasters  All these things are tragic and hard, but what is hardest is to imagine is making anything worse than what it has to be to make a political statement.

I am missing the America I know! To me it is still the land of the free and the home of the brave.  Here in Vermont we have survived the flood of our century, and elsewhere others are surviving fires, floods, hurricanes, and tornados along with a severe recession and being unemployed or under-employed!  But we need to remember that those that have gone before us did the same or worse:World Wars, The Great Depression, as well as a horrendous Civil War!  So buck up America!  We remain a great country, and are great people, and we need to face the challenges of today and show all that we are: proud, independent, dedicated, hard-working people that are there to care and correct the ills of our country.  We also need to reach out to others in need and not rely on an impersonal government to take care of us.  We, the people are in charge of our country, and the leaders we choose are there to serve our country and not themselves!

As we fight for what we believe in, let us become bigger, not smaller; exchange fear with courage and be brave about facing the challenges ahead of us. We need to not be divided, but united as we embrace what needs to be fixed.  May we all open ourselves to becoming informed, and responsive to the needs of our neighbors and country and each of us be responsible in solving the issues of our day.

Years ago, when I was a child, I learned that being an American ends with "I can"....and when we all do our part, America will continue to be the home of the free and the brave!

Friday, October 11, 2013

Still Stitchin',Stitchin', Stitchin'

I am still stitching away preparing for my holiday shows coming up, the first of which will be November 16th at the Holiday Inn in Rutland, Vermont.  Although I am known in our area as The Pincushion Lady, I am going to have new penny rug wool pins in addition to my pincushions, ornaments and other felted wool functional art.  I will also have my colorful and toasty fleece socks in all sizes (infant to adult). These same items are being posted in my Etsy Shop to start your holiday shopping early!  Don't hesitate to write to me if you would like an item and are intimidated by purchasing on Etsy and I would be glad to help you! Email: jmcvermont@comcast.net

Remember the days when we all had a seasonal pin for the holiday season. Here is a sneak peek of what is coming!

I have also expanded my wool flower pot pincushion choices as well. They make wonderful additions to sewing baskets, or simply sweet gifts as they are flowers that last year round, make no mess and take no care!








Overcoming

A quilt block from my Comfort-Her.
My lower left leg is red, swollen and tender to touch. Such things happen on my treatment that I will explain in one of my blog series on Living with Chronic Lyme Disease. By design of my treatment, inflammation runs high and can produce rashes and reactions that are otherwise inexplicable. I am worried and normally would seek medical attention, but the doctor with expertise in this long term medical protocol was forced to “dump out his Chronic Lyme patients” and I am one of his “dumpees”. I found a doctor who will prescribe the needed medication and oversee my care, but he has made it clear, that he has little experience with this treatment.

There is an information line on the internet for patients following this unusual protocol and I can consult with moderators, but having been on this program for almost five years, I already know my options. Beyond increasing the medication that I normally take on this protocol, there is really nothing that can be done beyond some very basic nursing care without being prescribed another antibiotic that can add more risk, especially if done by a doctor that isn't familiar with how to handle such medical issues with this protocol. As a patient, I am forewarned NOT to take my day-to-day-management issues to the ER. Regular doctors are not familiar with this protocol and can accidentally kill me by giving me meds that are NOT appropriate. We are also warned that all medications can be potentiated by this treatment and can cause lethal  reactions.

I thought I was in control of my reactions until I had a stroke while on the third year of treatment, caused by severe inflammation likely around an already existing brain lesion, and within minutes I went from feeling fine to not being able to move my left arm, hands or fingers.  I waited to let this Herxheimer reaction pass.  When it did not pass but worsened, I reported to the ER.  My diagnosis was correct, as was the ER doctor's.  I had had a stroke, but it was not due to a bleed or a clot and it did pass with the excessive inflammation, and my recovery was like that of a severe Herxheimer reaction, though it took a couple of weeks to fully recover. I was lucky.

This treatment is not without risks and I know them, but like most, I hope I will NOT be the one to experience them.  Heart attack, strokes or any such acute inflammatory response severe enough to be life threatening or permanently damaging is to be avoided by rearranging the meds you are given to dampen down the inflammation and keep it from becoming extreme.  It is easier said than done, especially as I am no longer on the pulsating antibiotic regime and have entered into a Late Stage Five that in a few patients can bring on an "over-exuberant inflammatory response" almost instantly.

Medical research has decided that one of the antibiotics used with some in this treatment likely suppressed our immune systems, so much so that they now use it with patients that have undergone organ transplants. It keeps their bodies from rejecting their new foreign organs.  For the few of us who were prescribed this medication, on a long term basis, we must go through a time where our immune cells regenerate and come back to life but doing so means that it functions erratically, producing these over-exuberant inflammatory responses.

It is nice to know why this is happening, but managing these erratic reactions is anything but easy. I don’t think we manage it, but rather, I think  it manages us, forcing us to stop, and take extreme care. On this protocol we normally control our reactions in one of three ways: reduce exposure to light (all kinds, but sunlight especially as this alters our Vit D levels and immune response), increase our anti-inflammatory medication, though hitting a balance is key as it also drives our Vit D levels lower and so can increase our immune response too; and through our diet, being careful to eliminate anything that might increase inflammation. For people with hyper-sensitive guts, and most of us that have been treated long term fall into this category, this too is harder than it seems. Most of us have “leaky guts” from being on so many high powered antibiotics that have damaged our natural bacterial flora in our digestive tracts, which often makes us react to everything.

Back to my rashes and reactions and the one that I am experiencing right now. It is clear to me that inflammatory responses that permanently damage tissues can be very serious indeed. This is not a comforting thought and I ponder what to do. My regular doctor gets very uncomfortable seeing me, as this treatment is out of her scope of practice.  I am appreciative that she knows her limits. She does not scoff, as many doctors do at this treatment, but has made it clear that with the risks that go with this treatment I really need a specialist doctor that has much experience with this treatment. Many of the immune responses I have are such that any doctor would be concerned enough to treat, though most are "self-limiting" and pass with a bit of time and, except for the extreme responses, are all part of how my body kills off the mutated bacteria that have escaped with other forms of treatment. Finding an experienced doctor with this particular medical protocol is like looking for a needle in a haystack and my search is continuing.

Meanwhile, acting as my own doctor/nurse, I am keenly aware that there are no guarantees in life. Sometimes having faith in the treatment involves sticking to the course, being cautious and proceeding carefully. I am taking risks with this treatment, but I have already failed previous more conventional hard-line treatment approaches. I share my risk with my doctors though I take full responsibility for all that happens to me. There are no easy answers and I have chosen this course of treatment. I continue to grieve for the loss of my doctor who is no longer allowed to continue treating Chronic Lyme Patients.  This is part of what we who have Chronic Lyme go through to get the care that we need.  I am lucky that I am a nurse and well-educated in my treatment, though it is no substitute for having an expert doctor to lead me.

“First do no harm” is the all-guiding maxim in medicine, but those of us that practice medicine,privately on ourselves or by profession, must accept that there are gray areas of treatment, where without pain, there will be no gain and carefully weigh the potential gains with the risks.  To live in remission of lyme infection is a reality that I can scarcely grasp but continue to dream about. Even to arrest it will be nothing short of a miracle.  It is happening for many and to this end I will persist until my body lets me and my doctors know otherwise. As in all serious matters, I hope and pray as I continue to watch and carefully assess what is happening with my leg.

I am grateful for my BS degree in nursing and am doing the usual things, keeping it elevated and taking more anti-inflammatory meds, and following other aspects of my treatment. I am grateful for this treatment that gives me a chance of living my life without lyme disease after having it for so many years, though "the jury is still out" regarding the outcome of this risky treatment. Life is indeed precious and overcoming obstacles, medical or otherwise is just part of living life to the fullest!

Thursday, October 10, 2013

And the Winner is...

The winner of this month's Common Thread Give-Away is Regina Murphy Silvia.  Thank you to all who left comments and there will be another give away in November!

Tuesday, October 8, 2013

Part Ten: Living with Chronic Lyme Disease: a long and difficult journey



Part Ten: Lyme Disease Diagnosed, and Still Doctors Don’t “Get it” 

My new "out-of the-mainstream-doctor/nutritionist" had been a God-send. The diets and supplements made me much healthier, but my doctor also noted the dips in my health that seemed to be cycling with some regularity, so after almost two years on her special diet and supplement regime, she tested me for Lyme Disease using the Western Blot IgM and IgG Blood tests.

These blood tests were sent to Igenex, a special lab for tick-borne illnesses, along with my medical history. At the time little was known about this special lab by regular mainstream doctors. This lab has both extra-sensitive testing equipment as well as specialists in tick-borne illnesses to properly review the histories as well as the lab results. Their conclusion was that I definitely had Lyme Disease and needed proper treatment. My IgG test was Negative (indicates current or old infection) and the IgM test positive (indicates current infection).

Because my IgG test was negative, but the actual test result paper read “equivocal” for all but one band, other doctors I worked and consulted with were not so sure that I should consider extensive antibiotic treatment without further testing to rule out a false positive test. Confused and not wanting to believe that I had Lyme, I took the advice of the regular mainstream doctors and asked my personal doctor for more testing. She agreed and a series of 24 hour urine tests were done following medication that was taken to flush out any potential antigens from my bladder walls. These test were positive. Lyme Disease could no longer be denied and as I read about this illness, I realized my history all made sense. My doctor also told me, what it took years for me to fully understand, that I was far sicker than I ever imagined.

I have since learned that testing for lyme disease is extremely difficult.  There are many different strains of Borrelia (lyme infection), and it is able to escape detection and treatment by mutating into a cyst form and hiding so that the immune system doesn't produce antibodies to kill it.  For this reason diagnosis by tests alone is NOT recommended and clinical findings must be considered as well, though in my case, my blood IgM test for active infection was positive, as were my urine antigen tests.

I then asked about my children and whether or not I could have passed it onto them during pregnancy as my pregnancies were so difficult and I had had the false positive syphilis (VD) test when I was very young. My doctor helped me to understand this false positive test had likely picked up the presence of my Lyme spirochete infection in my early twenties. I learned what many doctors do not know: Lyme can be passed in utero and my doctor agreed to test them as well. The results of their tests returned with a “strong positive”. Apparently they tested more positive than I did as their immune systems were not as damaged, having had the illness less time than me.They too had never had a tick bite or any rash excepting those that came with the usual childhood illnesses.

Their history indicated that their Lyme was most likely congenitally acquired.   Many doctors do not know that Lyme Disease can be passed in utero, and it is suspected that it may also be passed sexually. Fortunately, my husband seemed to be without clinical findings and went on to have a negative Western Blot test.  (to be continued....)

The illustration above is done by Hannah McMillen and the figure drawing by Sarah Kate McMillen

 (*Caution: These blogs are not meant to be actual medical advice but rather meant only to empower others to face medical issues as equal partners with their medical providers and never give up questioning and exploring what alternatives may be available for conquering their illnesses.  Living life with a chronic illness is a daily challenge and it is my prayer that no one give up on living their life to the fullest extent possible.)

Sunday, October 6, 2013

October's Common Thread Give-Away Artist is...

Another month and here we are again. It is time for our Common Thread Give-Away and this month's give-away artist is Rachel Barlow.  I have been reading her blog, and am comforted to know that I am not the only one battling clutter and calories and the endless chores that come with being a wife and mother and still keep up with what is going on in the world.  Thank you Rachel for your "common sense" way that you make sense of it all, and remind us of what is essential!

Your encouraging spirit nudges us to keep at it and reminds us that we can conquer our challenges, bit by bit, though I don't think a one ton container of discard is but a bit, and I am sitting here thinking how much bigger our house would be if I filled a few such containers as well! Inspired by you, I think I will start on a smaller scale and will try to fill up the waste paper basket and then another and empty them into garbage bags and haul out!  I am a bit older and have to take on some projects in smaller and more incremental steps!

Rachel is now printing her encouraging spirit right onto tee shirts and exercise wear! Be sure to see them on her blog. They make me think of tea towels that remind us of the work activity of the day! I smile and think I will ask her to have a very large shirt printed upside down for me, so when I look down I can see the activity right side up and jog my memory and keep me to task! Rachel, you are an inspiration to me and housewives everywhere!

In order to sign up for Rachel's free give-away picture above. please go to her web-site (Picking my Battles) and simply leave a comment to enter yourself to win.  It is that simple and good luck to all of you! and thank you again Rachel for your inspiration!

Friday, October 4, 2013

All Females Called to Support Shut-downs and Shut-ups


Girls get ready to roll up your sleeves and get tough!
I giggled Wednesday morning as I read Jon Katz's blog about the standoff between Red and the sheep at Bedlam Farm and that functioning as usual is shutting down, saving Lulu and Fannie continuing to reject Simon’s sexual advances (Bedlam Farm is shutting down ). Humor helps to put the world’s ills in perspective, for certain, though I wasn't laughing when I heard that over 800,000 were not to report to work, and that the vets who stormed Normandy Beach could only see the normallyopen-to-the-public World War II Memorials by mounting another storm! Of all the government workers that were laid off, I couldn't help but wonder why congress and the president, who can’t seem to be bothered doing their jobs, weren't among the first to be furloughed?

Remind yourself that this is real life! (from my "Comfort-Her". Pen and ink on material.)
It did hit home that many would be experiencing the effects of a lay-off just like we experienced when my husband was laid off almost nine months ago from his job of twenty-two plus years! Clearly it is time for Little House to give a “shout out” to all women in the USA! Little House’s Female Support group has been convening on a regular basis for these nine months and has much to share with those that are new to this unemployment situation! I want you all to take a deep breath and cut to the chase:  it is women who hold the world together.  It is a big job, but someone has to do it!!  You will be on 24/7 in the days ahead and you will be called upon to keep a level head and remind those laid off not to take life too seriously, though like Fannie and Lulu, warding off sexual advances may be necessary, to actually address the situation ahead.

My husband is working now, at a job that permits him to recycle the trauma of working for highly conflicted employers.  This is more common than most know and has been known to  trigger all the old panic attacks of being potentially laid-off.  It is important to remind those afflicted with such stress, that the worst has already happened and it can only get better (we hope)!

My husband has been promised the moon: a salaried position close to home and despite no benefits, it seems to be something too good to be true at his near-retirement age! The promised salary has yet to materialize, so he is clearly underpaid, overworked, and under-trained with only negative reinforcement  from his boss who frequently leaves him in charge, and all for what he could be making on unemployment. These are facts that my husband needs to be reminded of, as clearly it is common to get stuck thinking the same old things: am I adequate for the job; am I making the right decisions and what if I am laid off or fired, forgetting that that the former has already happened?

(From my Comfort-Her quilt blocks done after my first lay-off.)
We have found that life goes on after a lay-off and unlike the government's budget, cuts become real.  Rice, oatmeal and potato diets aren't really so bad and are dental soft as well! And the Alien Adult Children that have boomeranged home can become infinitely useful. Their paychecks can be figured into the equation of running the household and their emotional support solicited as well.  The computer games they have played can now be turned into helping their aging and laid-off parents fill out applications on line for unemployment first, and second, all the job applications to come...no knocking on real doors now!  It is also time for them to consider those lessons carefully learned regarding finding their talents and how to search for appropriate work and teach their parents, too long past such activities themselves and too hard for the person just laid off!

Yes, the Little House Female Support Group has been working overtime as well to offer full time counseling services to support the laid-off-ee to endure yet more abuse on a job, for the job they had will look better all the time next to the ones that are out there for present-day job seekers. It seems to be too true that most jobs will be less than three quarter time to avoid having to pay any benefits.  Some even suggested hiring on a consultant basis and limiting work to a particular job at hand, lest they have to offer them a place of work. Gone are the days of working hard and getting good pay with good benefits and so trimming expectations for getting a top job is part of the no-fail program!

A shutdown may also be in order, before “the shut-up” takes place! "Shutting-up while putting up" may have to be the order of the day...work is after all just that!  Dreams of wonderful careers may still be in order if one is young enough and brilliant, though the market is over-flooded with plenty of those sorts too. Remember when your kids were going to school and career counselors advised expensive schools to fulfill lofty career plans, education for the best positions that were already filled then and are no more?

Actually Shut-up-and-put-up have a lot in common with shut-downs.  There is little real communication between the lower-downs and the higher-ups.  The higher-ups seem to be in control, when they have little control and the lower-downs are left holding the debt bag, with shortages on all ends. Compromise and realistic expectations are non-negotiable.  Take-it or leave-it seem to be the two choices, and choosing to “take-it” requires female support groups to be out everywhere in full force.

Keeping those laid-off upright and out there pursuing yet another job will be priority and the first fact that must be hammered into their head and heart will be, "a person’s worth doesn't equal their job status"! The value of  female support groups cannot be underestimated! Repairing egos and finding real life solutions to real financial problems must be our specialty!

Remedies are plentiful if you simply keep your eyes and ears open. Brochures, normally considered junk mail might offer solutions! For Example, it is not too late to sign up for the essential skill building workshop for today's worker: "Noxious People;  Living and Working with High-Conflict Individuals".  I kid you not! The hard decision that follows will be who should be the first to attend.  There is a discount for groups of more than three, but when funds are short, it will clearly have to be the one in most need or the one most able to return with materials in hand. With many years of experience working with such people, setting up your own school may prove to be the most viable job option of the future!

Ladies remind yourself that this is all for your own good...and it could be worse...
Drugs and drinking, of course, are on the list of remedies, but is too expensive for the unemployed, besides which, it can turn into serious social and health risks. Ditto for ice-cream therapy! Lavish pats on the back have been assigned to committees and can be effective, depending on the degree of anxiety one is dealing with. Perspective Therapy is another good treatment and easy to execute by simply suggesting ”things could be worse if....” This therapy can pull many a despondent person right out of the gutter of despair and send them into a frenzied search for the the gun that was misplaced! A nice dinner can be a balm to those in grief and offer extra comfort and love needed during such a time!  Don’t deaths and funerals mean that others bring cake and casseroles? I think it would be a good idea to add job-lay-offs to the list of those in need of such social welfare!

Motivation is also part of the Support Group’s function. Wanting to return to work can be a real issue, especially for those nearing retirement. Getting out the camping gear and suggesting you go for a trial run in cold weather might help sober up those that may be thinking of retiring early without sufficient funds in place. Making a honey-do list of the years of projects that have piled up can also be very effective in motivating the most unmotivated.  Jobs look good next to the ones at home that offer no pay and were dreaded enough to cause a life time of procrastination.  When all else fails crying sessions can be supportive too, just be sure that heavy duty paper towels are on hand to mop up the mess and don’t worry, the activity gets “old” fast and will be “self-limiting”, though may need to be repeated a time or two to fully extinguish this behavior!

Last of all, my women warriors, let me remind you of what they say about “endings”..."they are but new beginnings". Keeping the flame of hope eternally going is another function of the female support group and so continually being optimistic in the face of doom and gloom is critical.  To keep your head above water, I recommend praying the never-fail Infant of Prague Novena that my priest recommended to me.  I did note that with nine months of daily repetition, changes are noted in me! I am gaining faith that my God is one that is "strong in weakness, powerful in tenderness, and a fountain of love".  He is "joy and light, wise and merciful" and will deliver me from "an inordinate desire of knowing what isn't mine to know"...the future.  "By his poverty, pain and almighty power" He will "do with me and mine according to His holy will", and "will protect and bless me forever"....and here’s the remarkable thing....He is doing just that! We are alive, and well and still working at cleaning up and fortifying our Little House and seem to be doing OK! The females have united and we are stronger than ever and our lay-off-ee, the head of our household seems to be doing pretty well too!! Thanks be to God!!

Prayers don't always change the situation, but they do change us!

Wednesday, October 2, 2013

Part Nine: Living with Chronic Lyme Disease: a long and difficult journey

Part Nine: Life Continues and With It Still More Stress

You know what they say, “if you want to get a job done, find a busy person" or, in our case, persons.  Well that was us and so in 1990 we took on the care of my mother and moved her here from Colorado.   Already stretched but with much compassion for my dear mother in need, what else could we do?

My sister had issues and was unable to offer enough support, and my older brother was busy raising his children as a single parent and could only offer her a spot in the nearest senior care center, so we took her “in” and her care “on”, moving her into our house for four months while we had her house repaired and fixed to sell in Denver and then she purchased the house next door to us. Her cross-country move ensued, all facilitated by my husband’s sister, may she now be crowned with jewels in heaven for this gift to us.

I was realistic that my mother had to live very close in order for me to manage her, my own care, work part time and care for my family too. It happened and the rest is history.  It was another decision that I will never regret, though it stretched our already too stretched family even thinner and made for many wrinkles that took much time to iron out. We learned that love has its own rewards and the increase in responsibilities taught us lessons for what was yet to come.  Roles got redefined again, and we all grew to take on what we felt was important to do.

This stress was not the only one however.  My youngest daughter’s benign Pectus Excavatum took on a life of its own and indeed her pediatrician had been right!  Her development was dramatic in ways that we had not expected. Her indented breast bone grew further inward leaving her only a few inches of space between her breast bone and spine. Her heart, to keep from being crushed, moved over to accommodate the crowding in her chest. This change was caught on camp physicals from one year to the next and by our GP, who was a heart specialist as well.There are many miracles in our journey and this was one of them!

No doctor had told us about this possible complication of her “benign” Pectus and I longed for city life and the vast array of medical specialists to face this problem.  After consulting with pediatric chest surgeons in a major medical facility a couple of hours away, it was decided that there was no guarantee about the results of a very invasive surgical corrective procedure, and her doctors and us held our breath and patiently watched her continue to grow and monitored her symptoms. Fortunately the worst was past us, and her heart continued to function normally and her lung capacity was miraculously only minimally reduced. Surgery, we decided, was not the best option.

Shortly thereafter I faced my next big health issue: insomnia. My side of the bed was built up with extra egg crate foam mattresses until my side was seven inches taller than my husband’s side.  I felt like the princess and the pea, as my body hurt in all the “touch-point areas” know to fibromyalgia patients.  Pain made getting restful sleep a challenge. Sleeplessness added to my chronic fatigue and after a sleep test to document that I was, in fact, getting little deep dream sleep, an anti-snoring mouth appliance was tried.  After biting through the first appliance and getting yet another, my snoring decreased but my sleep didn't increase.

Desperately seeking to feel more rested, I decided to try a holistic sort of doctor that I had heard good things about. She was a bit "out of the mainstream" and a licensed Nutritionist and Herbalist as well. She immediately voiced her suspicions of Lyme Disease, but decided to see if a strict diet and supplements would be enough to improve my condition. Dysbiosis and gastrointestinal issues followed the many antibiotics used to treat my bladder infections, wiping out the normal bacterial flora in my gut. This was to be a diet like I had never known before.  I eliminated sugar, wheat, milk, caffeine, all additives, and sugar substitutes and any alcohol including alcohol based flavorings. She then added enzymes and supplements. This frequently meant double meal preparation, but was worth it as I felt much improved!

Life was more challenging than ever before, with so much focus on my mother, our youngest child's chest condition, as well as my issues, but we were growing in our ability to deal with the difficult.  In the middle of this our oldest daughter took her turn at the limelight and had the worst ear infection her doctor had ever seen,causing scaring that permanently damaged her hearing in that ear. (to be continued..)

The illustration above is done by Hannah McMillen and the figure drawing by Sarah Kate McMillen

(*Caution: These blogs are not meant to be actual medical advice but rather meant only to empower others to face medical issues as equal partners with their medical providers and never give up questioning and exploring what alternatives may be available for conquering their illnesses.  Living life with a chronic illness is a daily challenge and it is my prayer that no one give up on living their life to the fullest extent possible.)

Tuesday, October 1, 2013

Calling All Women

Calling All Women!
I just read Jon Katz’s commentary on his Bedlam Farm Men’s Support Group (dated Saturday, Sept 28, 2013)...I just love it when Jon gathers with his male barnyard animals to discuss and explain the world of men to his these “seemingly stupid” creatures, who are really wise beyond their human species.  It does put it all in perspective when Simon, the ass, can’t make sense of what men do and Red wants to leave the country.

Though I likely share few political beliefs with Jon, I work hard to not speak my mind of such matters especially in my blog, excepting, of course, my recent blogs on Living With Chronic Lyme Disease, which has broken all rules. I don’t even speak of my political beliefs outside of my house or for that matter, even in my house much these days as I have noted the political divisiveness of the country is truly coming between the best of friends and even family lately!

My daughter taught me when first blogging to avoid writing of politics, religion or the medical world of which I was a part, for she knows me too well! These are subjects that I could not contain to blog-sized writings, and might find myself being the target of extremists wanting to rid the world of insane far-out wingers of which she thinks me one!

I have heeded her warning, though as much as she would like, she has been unable to silence me from expressing my political view in my own house! I did have to seek her permission to write my own personal story, agreeing first not to whine too much or become overly dramatic. I truly believe her intentions are pure—to keep me safe from the extremes within myself as well as those outside my house! Still, I think, such extremes are what interest me so! I do possess a flare for the dramatic and so why not watch Fox News, and then flip to MSNBC for therein lies the best soap operas of the day?

Ted Cruz is indeed a hero!!!  Could you go twenty-one hours without peeing? And why not add Green Eggs and Ham to his speech? Straight political theater would lose listeners in a minute!  How creative and human of him to add such important matters and even talk about guns as well! I marvel about how I was raised on all the famous cowboys, like Roy Rogers, Gene Autry and The Lone Ranger, and didn’t just stick to doll play.
Note my brother's cowboy shirt, tie and cover boots. His holster and toys guns are likely concealed!  I remember him being heavily armed! And don't be fooled by the seemingly "sweet girl" with the Mary Jane's. She is part of his posse and isn't just along for the ride in his uncovered wagon!


Could social politics really ruin such a good upbringing as mine?  I had cap guns in holsters and water pistols, and treasure the aggression that they brought out in me, lest I be a totally wimpy Cinderella princess that had to wait to try on glass slippers to escape her seemingly abusive mother and sibling rivalries! I am shocked to see young children being arrested or suspended from school when they are reported of playing with toy guns. Has the world really become so controlling? We played with toy guns, and even had boxing gloves and I wouldn't think of touching a real gun now!

I learned to slug it out with the best, and my brother was one of the best when it came to slugging it out.  My mind and body were taxed all the days of my youth and I do believe that there is a scripture passage (whoops...now religion brought in to break yet another rule?!!)...about how “brothers are born for adversity”. Mine were no exception!

I now thank my brothers for the first original harassment therapy I was to receive to make me “tough enough” to survive this world! I even took jujitsu training with a Girl Scout troop, only to learn that likely my brain would be my only real means of self-defense or escape from potential kidnapping or more likely of becoming a boring old housewife. Imagination has served me as well as any of my skills when it comes to surviving this world filled with evil and bacteria that threaten all peace and serenity!

My oldest daughter learning to beguile her dad while only months old.
She learned to drive and take control even then!
So women and girls of all species, let us unite and have our own Female Support Group and explore those wily ways we have so skillfully learned.  We have much to share with each other.  I am a human resource of skills untold as are you! I can even take screens off of windows enabling me to crawl out of my bedroom after locking myself in it to keep me safe from my brother’s torture when my mother was gone for the day and my brother took the doorknob off  to keep me locked up, though many of his tortures were ruses only to meant to terrorize, just like his April Fool's jokes targeting me!

We females are indeed creative and most brilliant creatures and I do believe we can solve the problems of our society if we but unite and share our creativity. Even my brother trembles at the thought of what I can do when I put my mind to it. I think we have what it takes to ward off terrorism and all the other ills of the world! I do hope that squirt guns aren’t outlawed however as we need women who, like me, learned to strategize and plan to ward off all possible threats!
Innocent children?  Think Again! They already had acquired skills to run the world!