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!

Meanwhile in My Studio...

Meanwhile in my studio I am crazily sewing.  Holiday shows are around the corner and I have only 43 sewing days to go to my first one, and after that only 14 more to go to my biggest show of the year following Thanksgiving!

Here is the rub, I am a person who lives for the holidays and so I really need to get organized.  Gone are the days when my Christmas cards were done before fall started.  Now I am more like everyone else and just try to squeeze it all in around holiday shows and hope to get them there before Christmas! There is something about the pressure that motivates me to work harder. I learned a long time ago that there is no rest for the wicked and realized that I have some serious wickedness issues!!

I have completed 280 pair of fleece socks and hope to cut out more, just in case there is a holiday rush on them!  We are also working hard to get everything ready for posting...I just sized hundreds of pictures of my wares for Etsy, and tonight will get back to doing needle-felting and embroidery work on pins and ornaments. I seem to thrive on the challenge of it all, but my blog writing seems to diminish.  So instead of writing I will offer a few sneak peaks of what is coming.

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

Part Eight: Small Town Living Knows All Secrets

It is not surprising that my husband took on greater roles with raising our kids, though I used my well-developed farm voice like a megaphone and continued exerting my influence over my family as I could. I didn't know it at the time, but our small town collectively felt bad for my kids and so their friends’ parents extended their parenting to my kids and myself too, protecting me from their antics that should have been mine to know.

My youngest daughter, read her Mother's Day special writing about me, to me at a first grade Mother’s Day program. I shuddered to think of what she might write, with good reason.  She told the story of her mother as only a child can.  She read that she she too had gone on a family vacation to Disneyland, like the other children in her class, when she was six months old, though couldn't remember riding any of the rides.  She also wrote about her having to clean the house, upstairs and downstairs and all around it while her mother was in bed and added that she also fixed her own lunches to take to school. I was embarrassed but tried to be gracious and added that she was indeed a wonderful daughter, though I wanted to cheerfully choke her! It was an embarrassment to my daughter as well, for her greatest fear was to be laughed at, and the town had a good chuckle over her personal rendition of her Cinderella story. The town was privy to what I hoped I could keep private.

Wherever I went in our small town after that, inquiries would be made as to whether she could be rented out. It spoke loudly of what I knew: our life wasn't normal and the paper she wrote and read to me was glaringly honest and spoke of the hardship that my health had taken on my family, not to speak of my pride as well! It didn't matter that I took on teaching Catechism at church, for it was my child that spent the longest time in the confessional, though at least the priest and God would keep her complaints confidential! Our life was far from perfect, and I wasn't the mother or wife I had planned to be! Our girls worked hard, as did my husband and some things never changed: when I wasn't working hard, I could be found on the sofa or in bed...still too tired, or sick. Little did I know that this was but preparation of what was yet to come! (to be continued).....

Note that this blog precedes others that will discuss my diagnosis of Chronic Lyme, now known as Disseminated Lyme, and will discuss the split in the medical community regarding whether or not it exists and how it should be treated, and the challenges of getting adequate treatment with this politically unpopular disease.

My story is not an uncommon one.  Lyme patients often suffer being victimized twice, once by the disease and another by the medical community that questions the sanity of those that know that this illness exists and seeking treatment often puts us at odds with the majority of the medical community. Although writing my story is cathartic, I really don't have a need to live my story more than once, but as it is a common story for lyme patients, it is a story that needs to be told as seen through the patient's eyes.  More and more of us are coming out with our private stories, no longer hiding what we, ourselves would prefer to remain private. Only recently the CDC revealed that the incidence of this illness is thought to be ten times greater than reported, and those of us familiar with the CDC know that this figure is likely a gross under-estimate of the problem caused by this disease!  It is also a disease that is not just passed through tick bites, and my children's Congenital Lyme is a testimony to that! It is a disease that is worthy of research support, as it is a health threat not unlike cancer and AIDS that is taxing the vitality of people all over the world!

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.)

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

Part Seven: Life Goes On and Disease Symptoms Progress

We lived on the farm for six years before the owners decided to sell it. We were heartsick about the decision and yet knew it was time to quit renting and get back into a house of our own and so we relocated to the nearby town of Castleton, putting us only a short distance from the small city of Rutland, and still only a fifteen minute drive down the road from our collection of new Vermont friends, and also a bit closer to my husband's work.

We had learned the difficulties of being too rural and Castleton was a beautiful little college town, with more local ammenities and we moved into an air-tight almost new house.  Stress came with having to use our window shades for privacy once again, but it was still semi-rural, and our beloved Vermont countryside was still there to enjoy all around us. Our new home offered us walls without the scritch-scratching of critters within them and the cold didn’t blow in. It was very quiet and nice and we were ready for a more modern house, though it was a good deal smaller than the farm house.  It was a local move and easy next to our cross-country move.  We did miss the wood stoves we had on the farm when the power went out, but in our new home, the power outages were less frequent.

I was tying fishing leaders for Orvis then as my school job only lasted one year.Leader tying allowed me to stay home with my youngest child, and was relatively stress free, though the work wasn't always consistent,so I decided to return to nursing for greater job security and did a refresher course at a nearby hospital to renew my RN license. I went onto achieve this goal and the next, becoming a per diem office nurse in a family practice. The leader tying work became an extra job that my husband and I did on the side with the help of our girls. Working per diem was nice as it gave me the option of having some days off as I needed to accommodate days I didn't feel well  and with the side "leader work" our income was pretty steady. As long as I was on level ground and wearing "sensible shoes" I was steady on my feet. I was already noticing that with patience, it seemed that my symptoms would pass, but others would replace them.

Serious headaches and frequent bladder infections were my next symptoms. (Spirochetes move into the brain and also the bladder walls—again I learned this much later). I was under the care of my GP as well as a rheumatologist and a GYN doctor, and as with all my other symptoms, I was treated for separate acute illnesses and it was thought that CFIDS made me more susceptible to them.

My headaches would make me pace and cry in the dark or sometimes rice-bag my head to my pillow to decrease the dizziness that sometimes went with them. It was so bad one day that I had to call friends to pick up my kids from school and summoned my husband home.  I couldn't move without the entire room spinning. Dizziness had turned to vertigo and I remember sticking my head in a pan as I was so nauseous.  I even rice-bagged my head  to my pillow to slow the spinning sensation and crawled to the bathroom, as I couldn't walk. My doctor prescribed Antivert over the phone, and I saw him only when I was better and could travel.

Emergency care at our local hospital, I had already learned, was to be avoided.  I was chemically sensitive and so, many medications given to decrease my pain or alleviate my symptoms made me actually feel worse, not better.

UTI’s (urinary tract infections) were frequent and came on suddenly and violently.  I was on a standard antibiotic treatment for them and always kept a supply of bladder anesthesia medication in case I couldn't get in to see my doctor right away. I simply carried on doing the best I could to deal with chronic exhaustion, and these more acute flares, working per diem as an office nurse and helping to raise our two girls. I didn't even stop to consider alternatives to my treatment—which at the time, I would have simply asked, “what alternatives?”

I figured that pushing myself didn't really do any harm, as no matter what, I would be “down” the day after any good day, so I made “hay when the sun was shining”. My do-list was readied when I was horizontal in bed or on the sofa and I worked as efficiently as I could when I had a good day. I sought hormone replacement treatment (HRT) as I still felt like my illness was cyclical and must be related to the only cycle I knew I had, and was still trying to blame it on hormones or lack thereof. Our move to the country had not cured my ills, though small town living certainly made it easier to connect to our community and I don't know what we would have done without the support of friends. (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.)

It is in Giving that We Receive

We have been putting up produce from my daughter’s garden, as well as other produce that comes our way. It is part of the “waste not, want not” mentality that I was raised with.  Be it pickles or fruit or herbs or even material scraps of one sort or another, we squirrel it away. I learned a long time ago that if ever I need to feel better, there is nothing like giving a little something to another to lift my own spirits, as well as those that I give to. With collections of home-canned produce, or tiny homemade gifts, or even sending a "like-new treasured item that another might enjoy" doesn't cost much and it makes me happy!

Of course, it need not be material possessions. Gifts of self may be given too. Kind words, a phone call to those that don’t get out, an e-mail or card to let another know that they are being thought about or surprising your mate, child, or friend, by fixing them a hot cup of tea, or cocoa or even a glass of ice water is but a tiny gesture that can let them know how much we love them. It is easy to forget that doing such small acts of kindness can touch the heart of another.

I received a beautiful gift not long ago from a newly made friend.  It was a posting from her on facebook of a picture of the jar of pickles that I had sent to her, along with my little turtle pincushion that she bought at Maria’s Bedlam Farm Open House.  What made this a gift to me was not only this lovely picture, but the note that accompanied it. It was a little note of gratitude for my e-mails and prayers offered for her when she was going through a scary medical procedure.  It made my heart glow to think that what was small to me had made a difference to her and was too sweet NOT to re-post it here:

"It's the simple things in life that bring me the most happiness. I am full of gratitude for all I have. Here's 2 chords of wood delivered today... I love fire wood and I love stacking it. It's helping me to face the change of seasons here in New England smoothly and with positive anticipation. I can't wait to get at it! This little turtle pincushion was made by Jane McMillen of Little House Home Arts. I'm a slowsky....my husband is the hare! That's what keeps things functioning around here. The turtle is one of my favorites of Jane's pieces. When he's not on the woodpile he's among the others I collect. My husband spotted it right away in the gallery at Bedlam and bought him for me. Now, Jane couldn't be there Sun. and I was disappointed. She and I became friends a la the Jon Katz method, through the internet. We made a deal to become"penpals"(remember when we were kids and had pen pals?) last fall. She's an exceptional woman, artisan, and hot sh-t! Also a retired psychiatric nurse she helped me through a difficult period of time going through a heart procedure. No one warned me about the depression to follow for all kinds of reasons. She supported me and traveled through this difficult time right by my side.(Even though we are states apart.) She kept me hopeful and laughing all winter. For this I'll be forever grateful. We traveled to Castleton, VT one w/e to visit her home and pick up "Atilla the Hen", my grumpy doorstop. The four of us had a grand time! So when her hubby came to pick up her wares at the end of the open house he brought us this jar of garlic pickles Jane and her daughter had put up. This meant so much to me. We both think it's pure artwork and too pretty to open and enjoy. I think we'll admire it a bit longer! Yes, these simple things have made me a happy woman today. When we say grace before we eat each night we always ask to stay grateful. It's working so far!" C.C.

Gratitude shared is indeed one of the best gifts ever to warm a soul! This lovely note reminds me of how many opportunities there are in every day to reach out and share a bit of love with someone! It is truly in giving that we receive and I receive so very much thanks to everyone's kindnesses! (Thank you C.C.! Your note is truly beautiful and a good reminder to me of what is most important! I removed you and your husband's names to keep your privacy.)

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

Part Six: A New Convert and a Serious Warning

It is not surprising that with our move came a conversion of heart and spirit. I needed strength beyond my own and though I prayed and had a strong Christian faith, I converted to Catholicism at this time. Attending a Stations of the Cross Service brought meaning to my suffering that I needed. I realized as never before that a crucifix, didn't just symbolize faith and salvation, but was also the the very symbol of suffering. I was beginning to appreciate that in embracing my life, I would also be embracing suffering, as I was diagnosed with having a chronic illness. I needed even more faith to take my life, full of uncertainties, on a day to day basis.

A bonus to being Catholic also meant that I also got extra "earthly Fathers” to watch over me and my family. Our priest before moving, warned us to be sure to practice a lot of forgiveness during and after our move! He knew what we did not: that we were biting off a real challenge in the midst of already being seriously challenged with my ongoing health issues and Vermont, though beautiful, would be no utopia.

I was already sick and tired and we weren't just moving across country, changing our home, jobs and friends, but changing our life style from city to rural living as well. It was a new adventure and our chance for a new life!! Without a commitment to this dream of a better life, we likely wouldn't have made it. My husband had rented us a big old farmhouse, with emphasis on the old, on a three hundred acre farm, for no more than our house payment in Denver and thus began our new life in Vermont.  It was a move that we have never regretted, though it did make us question our sanity for years to come.

Falls followed, quite literally, and were to be my next symptom. I didn't even stretch out my arms to catch myself and just simply went flat down! These falls, I knew, were different from falls caused by ankle instability. Despite their “inconvenience”, it must have been that I experienced blood pressure or balance issues and they happened so quickly that I fell relaxed and remarkably did not seriously injure myself with them. My new country doctor never did know what to make of them and fortunately like everything else about this illness, they came and went and we continued spending the summer painting rooms and planting a garden, which has been the subject of previous blogs. (Everyone Needs a Farm)
                                        
I was still chronically tired, but fortunately my country doctor  knew a lot about my most recent diagnosis of Chronic Fatigue/ Fibromyalgia. It was known as CFIDS for short which stood for Chronic Fatigue and Immune Dysfunction Syndrome. I had suspected that my bizarre symptoms would add up to something that medicine would one day be able to explain.  My mysterious illness now had a name, though explanations weren't so easy to come by and a cure was even more elusive..

Our new doctors were encouraging as they didn't seem to be fazed by our health issues.  Even the kid's pediatrician in nearby Middlebury seemed familiar and comfortable with my youngest daughter's severe Pectus Excavatum (indented breast bone birth defect) and the extra krink in her bowel that caused severe constipation issues since birth. Country doctors seemed to be "common-sense sort of doctors", practical, accepting and pleasant. Our pediatrician smiled as he warned us to expect dramatic physical changes when my youngest daughter hit adolescence as she would look more developed than usual as her chest was so inwardly concaved. The digestive issues and other health issues were just a matter of taking them one by one. More fiber, more fluids and we were advised to be flexible about her eating habits as she would regulate what she ate according to how well her bowels were moving. My doctor came with expertise about CFIDS, for he himself suffered with it and moved to the country just as we had done to decrease the stress of his life as well. This was reassurance that we had made the right choice.

We didn't miss the city, except for our family and friends left behind in Denver, and country life had many unexpected pleasures. Wild animal life abounded right outside our farm house and even moved into its walls in the winter. A school teaching job fell into place for me and all was well.  Nirvana, we thought, was achieved and it would only be a matter of time before my health would be normalized with our new stress-free life (or NOT?). (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.)

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

Part Five: Major Life Style Changes—More or Less Stress?

My job as a special educational consultant in a large suburban school district was a stressful position, especially with my health being so compromised. Added to these stresses were those of my husband’s job lay-off as well as living in a city where cross-busing children to provide for racial balance in the schools made us think twice about our life style. A stabbing across the street and being shot at while strolling on a bicycle path pushed us over the edge. We considered a major move across country to the rural life of Vermont. If stress was increasing my health issues, perhaps decreasing my stress would improve it.

We had visited Vermont during a summer break following my husband lay-off and traveled with a camper, so as to take our beds with us.  We stopped to see relatives along the way, including a cousin in Vermont while on route to my husband’s homeland of Massachusetts. Vermont, we decided would be "the solution" to our problems and give us the peacefulness and tranquility of a more rural setting and would help me to regain my health.  A job offer in Vermont was not to come for several years but when it did come, we didn't hesitate to jump on it.

Decreasing our stress did, however, mean that my husband moved ahead of the family by six months, leaving me behind with two kids to care for, along with working  full time, as well as the job of packing us to move after my daughter and I finished the school year.

All was falling into place or so we thought, until my husband left town.  The deal on the house fell through, and being so desperate to sell and continue with our plans of moving to Vermont, I decided to sell the house myself and did so more aggressively than our realtor. Of course showing the house and selling it on top of everything else was enough stress for the most normal of people and I was anything but.

I learned to pray my way through most days and nights and my oldest daughter grew up too quickly being my right-hand helper in early grade school! I don’t know what I would have done without her help of watching her little sister as I methodically and systematically packed a few boxes each night before going to bed.

The house was sold and we were packed and ready to move as planned in June of 1990, when my husband returned to move us via a U-Haul truck with a trailer on the back. I followed behind in my VW convertible, loaded to the roof and I remember stopping every few hours for me to nap and giving my husband and kids a chance to stretch.

This move was a growing step for us all! Bursts of creativity came with it! I stepped through the bottom of the back of my car only days before picking up my husband from the airport when he returned to move us. Desperate to keep anyone else from stepping through the hole, I pulled out the strongest pizza pan I had and set it under the back floor mat, spanning the hole.  I thought it a temporary fix and was temporarily safe enough as the hole didn't extend under the seats, but was shocked to see that the car repair man simply bolted it permanently to the bottom!  Our humor and laughs were growing along with our creativity, both invaluable coping skills in the years that followed.

In addition to the hole in the bottom of my car, the starter went out as soon as we left Denver and so we had to park my car on an incline whenever we stopped and my husband had to push it to jump start it all the way to Vermont! Life, we were learning was a series of challenges and creativity and humor added to our ability to cope! (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.)