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.)

Domestic Home Hearts Called to Sew Love!

A little late but not forgotten, my heart goes out to Colorado! My relatives are on higher ground and came out unscathed, though  I am still checking on a girlfriend that lives south of some of the major flood areas. Many have not been not so fortunate! It has only been a couple of years since Irene's rains took out hundreds of roads here in Vermont, with all-too-common-reports of neighbors in their homes floating by, only to find themselves in someone's back yard. Farm lands were stripped leaving fields looking like they had been stone bedded rivers and many communities were hard hit and left stranded for a time.  Still our state's losses were small in comparison to what is happening in Colorado. Fortunately only a few lost loved ones in our storm, whereas Colorado reported over one thousand missing!

With this news, preceded by Syria annihilating its own people, and followed by yet another murderous shooting spree, I cannot help but think that if only our domestic home hearts could bind up this sorry world wrapping it in comfort and love, what a better world this would be. Love is truly the only power that heals and has the potential to prevent these evil tragedies.....Sew love my friends, sew love!

Part Four: Living with Chronic Lyme Disease: a long and difficult Journey

Part Four: Life Continues and New Problems Arise

As my biological clock was ticking, and my daughter's and my symptoms were abating, we decided to have we had a serious talk with my GYN doctor about having another child. The issues I had during my first pregnancy were frightening and we wanted to better understand what had happened and whether or not having a second child was a safe option.

He assured us that as my symptoms had largely come and gone and with it my first and only serious diagnosis, it was foolish to let a seemingly “fluky health incident” destroy our dreams of a bigger family. This was the advice we wanted to hear and I was soon pregnant with our second child.

This time I took greater care of myself and though I seemed to do better in some ways, my second pregnancy still did not go well.  I "spotted" during the first trimester and my GYN didn't think I would carry my second baby to term. He told me I would likely spontaneously abort her, the way it was going. We were all pleasantly surprised that I did manage to carry her full term. I was more lucky than I realized at the time, as many mothers infected with Lyme Disease cannot. I, of course, still did not know that I had Lyme.

By the end of pregnancy I had experienced carpal tunnel in both of my wrists and after giving birth, I became sick with pneumonia and pleuritis (yet another “itis”).  Still being watched by rheumatologists, the diagnosis that followed was Chronic Fatigue Syndrome/ Fibromyalgia.  There wasn't much known about it at the time, but it legitimized what I was feeling: very tired with pains that would come and go!

As I struggled to adapt to what I thought was to be a chronic state of exhaustion, I used both my skill sets as a nurse and special educator not just to do my job, but to live my life. I became an expert in setting goals and doing small incremental tasks to accomplish them and found ways to become better organized, more efficient, plan ahead in the extreme and when I could, execute everything according to plan. It was my way of compensating for my lack of energy and achieving what I wanted in my life.

My nursing knowledge and skills were also invaluable, for without realizing it, I was constantly evaluating and treating us and only seeing  a doctor when it was absolutely necessary.  Doctors, I learned, didn't seem to provide any real answers to what was happening to me or my kids. It seemed that most often my issues were blamed on this inexplicable illness and I was simply advised to take better care of myself, though I didn't have the energy I needed to work and care for a young child and baby? They didn't seem to understand that however I managed, my exhaustion disrupted any sort of routine or resolve I might have for leading a healthier life.

My second daughter was also colicky, and was born with “benign birth defects”.  We didn't know at the time that she too suffered with Congenital Lyme Disease. Her colic issues were worse than my first daughter's and we nick named her "our cry baby" as her colic lasted six months. Her belly was distended and she suffered severe consitipation that doctors thought was due to an extra crink in her bowel.

We were led to believe that her Pectus Excavatum, although rather extreme, was a benign condition. This is a birth defect where the end of the breast bone is indented.  Sometimes heart issues accompany this deformity, but luckily not in her case.  We weren't done with the issues that her Pectus Excavatum caused, though we didn't know it at the time and were given many years before we had to revisit it.

Life wasn't getting easier! We didn't understand at the time just how ill I was and that we were raising two children that were equally as ill. I did master the art of compensating which meant that I was the only one in my neighborhood to have my holiday shopping done, along with my Christmas cards ready for mailing before I returned to my school job every fall, for I knew I would likely be so exhausted by December vacation, that I would be ill and spend much of my vacation in bed recovering before starting the second school term after which I would crash again.

I called after-school time with my kids parties which meant my oldest would run for the crackers, while I got the games and books and headed for bed. I had to go horizontal after a day of work. We even got a bigger bed. All Martha Stewart ideals of home-making were adjusted as well. Casseroles and home-made TV dinners were made and frozen on the weekends and simply popped into the oven each evening. Our life schedules were altered to meet the demands of raising kids and working a full time job that exceeded my physical energy.

Our family roles were flexible and accommodated the demands that our illness was causing. We simply did as we needed to do to keep up with raising our kids and working, and could only wonder why others doing the same were not so stressed.  My husband’s evenings were spent doing laundry and household tasks, while I took the children to bed with me right after dinner.  I read to them until I fell asleep, and then the oldest would get her dad to tuck her and her sister into bed.

At the same time we felt so stretched, little help was available from our extended families, as my husband's parents lived out of town and  my parents were struggling to deal with the return home of my younger brother who was suffering from a serious atypical MS that would kill him eight years later. My doctors speculated later that his Multiple Sclerosis was possibly lyme-related. My younger sister suffered with drug addiction problems. Her drug of choice seemed to be "speed", likely self-medicating through similar issues with fatigue as I was having, though not perceived that way at the time. As I was putting up meals for our family on most weekends, I took to putting up special meals for my brother and would offer support as I could for medical emmergencies that my parents struggled to know how to handle. We were all on overload!

Paying for child care while we worked was no small expense, and while we moaned about the stress, we were grateful to our wonderful neighbors across the street who would occasionally take the kids so Tom and I could have a couple of hours to ourselves to grab a quick hamburger out. As one of my favorite authors wrote in her book, The Hiding Place, "this was but preparation of what was to come." (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.)

Who Would Have Thought?

A few weeks ago now, we discovered that even after changing our cat litter box, our pantry/ laundry-/ mud-room, still smelled like cat pee. Changing the cat box has been a duty relegated to my poor husband and he kept attesting to the fact that he had, in fact, just changed it, and couldn't imagine why it smelled so strong. We have had pet cats for many years and so we knew to watch our cat for signs of illness, as sometimes a UTI (urinary tract infection) may cause a strong odor, but Zeldie, our cat seemed just fine. We also use plastic bags to line our litter box to keep the bottom clean and free from residual odors. I am ashamed to admit that when things don’t seem right, it is always easy to blame my husband and I figured that he wasn't rightfully calculating the time intervals between litter box changes?

Not long thereafter, my husband noted that when the pantry door was open the odor was worse. I went investigating and noticed that the bottom board of a small shelf unit in the pantry closet appeared wet and called my husband from his peaceful evening of TV watching and we proceeded to pull everything out of the pantry closet, no matter that it was 11:30 at night and we were ready to head for bed instead! We discovered that a two and a half gallon jug of water we had on the top shelf had gotten a bit crushed, creasing the bottom and causing it to leak.  It had leaked onto the top shelf and then down the back of the storage unit until the whole little particle board cupboard was wet. It was so saturated with water that my husband could hardly carry it to the garage. Hugging the shelf as he  carried it out, my husband got a good whiff of the stinky shelf! We had definitely found the problem. We shut the door to the mud room after setting up a fan in the window to dry out the carpeted floor of the closet and with our salvaged dry food items tucked safely into boxes, went to bed.

The next day, I got on line and queried about wet particle board and there it was....wet particle board/ and/or wet plywood sub-flooring will cause a smell just like cat pee! It is actually caused by the glue in the board getting wet. The carpet floor of the pantry closet was wet and so I feared the worst, especially as the days went by with fans blowing to dry the carpet and the smell lingered.  I called our insurance company, for I was afraid that the walls and or the wood sub-flooring had gotten wet and according to articles on line, the only way to rid the house of the smell might be to strip out the wet sub-flooring or even wallboard to prevent it from causing black mold. We continued fan drying the closet and kept the door shut to the rest of the house as we considered our next plan of action to address the lingering, albeit fading noxious odor.

My husband thought that steam cleaning the carpet was next, though I wasn't so sure that this alone would deal with the smell, and so we compromised.  He lifted the carpet in the closet and found that the pad under it was retaining water, making the sub-flooring wet as well.  He then cut out the carpet pad in the closet and we continued to try to dry the wet sub-flooring.  Fortunately the smell went with the pad and when the floor dried, it had no odor.  He then replaced the carpet padding and laid the newly cleaned carpet back down in the closet and replaced the cupboard with better a better fitting shelf unit. We were delighted that costly mold experts or contractors were not needed to fix the problem.

So if you find a cat pee-like smell in your house, consider looking beyond your cat. It may be wet particle board, or wet plywood sub-flooring, and look for whatever might be leaking. Who would have thought? (And who would have thought I would picture our less- than-lovely cat box on my website?)

Part Three: Living with Chronic Lyme Disease: a long and difficult Journey

Part Three: My Symptoms Increase and More Challenges Ensue

Although my symptoms and complaints increased they were often discounted by my doctors or worse, were attributed to anxiety, or even being a hypochondriac. This is not uncommon to those who have invisible and undiagnosed illnesses. Lyme often produces strange, inexplicable symptoms that come and go and leave doctors perplexed. What cannot be explained is often attributed to having a psychological basis.

There was good reason for my concerns, as well as the anxiety that accompanied them. If inflammation is enough to be systemic, the brain will also experience inflammation and cause anxiety. I was more than willing to to seek psych support as I knew that I needed help, though I didn't understand, nor did my doctors that many of my issues really could not be helped with counseling. My symptoms still weren't being recognized as being connected to the serious infection raging in my body and brain.

I learned in my nursing school days that the name of any bodily organ with “itis” at the end means “inflammation of” and my list of "seemingly acute illnesses" ending in “itis” grew longer through my twenties and then into my thirties. Along with my many “itises” I also went on to have heart irregularity that stymied cardiac specialists. Doctors noted that this irregularity was fortunately benign, not life threatening. This was just yet another of many documented and seemingly random bizarre symptoms.  I later learned that Lyme is a disease that causes inflammation as well as heart irregularity, which for some can, indeed, be life threatening.

When I became pregnant at age thirty-five, my symptoms finally got the attention they deserved from medical specialists. Pregnancy can further tax a body that is already stressed with an underlying disease process, causing symptoms to worsen.  For me, it was a time of fevers, joint instability, allergic reactions, and skin break outs as never seen before.

It should not surprise me that my first serious diagnosis, albeit a false one, came right after I delivered my first child. Serious back and joint issues ensued and with them more abnormal lab results. Systemic Lupus, an autoimmune disease, was the suspected cause.

I couldn't lift my baby without serious pain and my neighbor had to help me lift her in and out of her car seat when I went back to work. Breast feeding did not go well.  My daughter was colicky and had on-going ear infections.  Pink liquid bubblegum Amoxicillin seemed to be a daily supplement to the usual infant feeding regimen.  I was not a glowing mother, nor was my baby easily contented. Twenty-one years later we would learn that she had been born with Congenital Lyme Disease. Lyme we learned could be passed from an infected mother to her child in utero. We didn't realize that our baby's health issues as well as mine were Lyme Disease induced. We just knew that life was a lot harder and we didn't seem to be like other young parents with their first-born children.

A colicky baby is enough to stress any parent, new or experienced, and we struggled to cope.  Being too tired or too stressed, became our way of life and by the time she was off to kindergarten, we had mostly acclimated to our new "norm" and our symptoms seemed to have abated a bit.  My diagnosis of Systemic Lupus was rescinded by my doctors, though Chronic Lyme Disease had yet to be diagnosed.

I had surgery to repair a badly damaged ligament in my left ankle and still wore ankle splints on both ankles under my socks, to prevent my ankles from turning at the slightest irregularity in the ground surface. I didn't know it then, but I was not only experiencing joint instability problems but neurological issues as well.  My proprioception was altered and I didn't know exactly where my feet were in relation to the ground.  I exchanged beauty for function by wearing “sensible, broad-based flat shoes", that would not easily turn, keeping me safer and preventing further injury! My husband and I were altering our dreams, and adjusting to the new realities of what we thought were random health problems for both me and my child. (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 Two: Living with Chronic Lyme Disease: a long and difficult journey

Part Two: Abnormal Findings, but Not Considered Significant

Lyme disease is caused by Lyme Bacteria, Borrelia burgdorferi that is often, but not always transmitted to people through a tick or other insect bite. Lyme bacteria takes different forms, but often it is the spirochete form that first penetrates and infects human cells. Spirochetes have life cycles and so I erroneously reasoned that if my symptoms were cyclic, they must be related to the only cycle I knew I had, though sometimes the pattern of feeling good or bad did not seem to coincide with my female hormone cycle.

My hormones were raging and tumultuous at best and with them my menstrual cycles very hard and painful. My girlfriend in college used to laugh and tease me, asking how many days before or after my period, as I blamed everything on them, not knowing that I was in fact harboring spirochetes whose life cycle were truly making cycles of varied states of well-being in my body.

My validation for spirochetes being present in my young adult years, came when I had a false positive syphilis test during a physical when I went to work in a California hospital after my second year of college during my summer break. Apparently a VDRL test was done routinely for employee physicals and the results of mine came back positive. I was clueless, when they asked for ”my contacts”, I thought they meant the ones in my eyes.

It only took a brief examination to confirm that I was indeed a virgin and that naive! The doctor didn’t see then that fatigue, and achy joints along with this false positive test could be significant, though perhaps to gain employment I failed to mention my complaints. Syphilis is a spirochete, similar to the Lyme spirochete and hence showed a false positive VD test.  I also didn’t know, and neither do many doctors that women with Lyme have unusually hard and painful menstrual cycles with exaggerated PMS.

As my symptoms often came and went, I was optimistically fooled as many are, that I simply suffered from different acute and short term illnesses.  One doctor even thought that I was ill more often simply because I was a nurse and exposed to more “bugs”.  At the time this made perfect sense, though as a child I was never sick, and my peers weren't experiencing the same struggle with their health as they practiced nursing.

After college,I thought perhaps my fatigue was related to shift work, which didn't agree with my body. As a newborn nurse, we would often donate blood to assure that our tiny patients received only blood from healthy subjects. Mine was tested and not acceptable due to a positive CID Titer (Cytomegalic Inclusion Disease), another sign that all was not well within, though I didn't feel ill most of the time. I reported this finding to my doctor, but again he had no answer for me. He felt, no treatment was needed, as to him I appeared nothing less than a healthy young woman.  Lyme Disease, I have since learned, mimics many different illnesses and so it is not surprising that my doctors were as fooled, as I was.

I knew nothing of Lyme Disease and even if I had, I wouldn't have given it a second thought. I had never been bitten by a tick or experienced a bull’s-eye rash and my come-and-go-symptoms fit most common acute  illnesses.  I have since learned that many stricken with Lyme don’t recollect having a tick bite or any sort of rash, much less the hallmark symptom of a bulls-eye rash. Rashes can also go unnoticed if they are in an area that is hard to see. I did grow up in the era of Hair and had sufficient hair on my head to cover most of my body. (to be continued...)

(The illustration above is done by Hannah McMillen; 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.)

Daiwabo Dreams

I am doing my "factory-style" sewing, making my well-loved fleece socks for my holiday sales as has become my tradition, but meanwhile I am having Daiwabo Dreams. Daiwabo is a wonderful fabric that I saw at a quilt show and bought only a half yard as it can be quite costly and I thought perhaps my husband, once having been a fabric specialist, could help me find it closer to cost.

The quilt I saw made of this fabric was a large tumbler tessellated quilt design. It was beautiful in its simplicity and in the richness of the traditional Japanese fancy yarn-dyed Daiwabo taupe fabrics used. It has now been several years since I saw this quilt and became enamored with this fabric, but I have learned that "where there is a will there is a way"! I do believe that there is a fabric genie that makes our fabric dreams come true. Only a year ago I wrote about the mother-load of wool fabrics that were almost gifted to me following an estate sale and just recently the same thing happened with a lesser, but still significant stash of Daiwabo taupe fabrics!

Someone on sewitsforsale.com *was "getting real" about her fabric stash and decided to sell off much of it, thus starting my own collection of Daiwabo taupe fat quarters at less than half price!!  I then found a wonderful on-line retail fabric store, One World Fabrics (https://www.oneworld fabrics.com)  that sells Asian Natural/Taupe fabrics along with other special textiles from all over the world and so I am carefully adding bits to my collection by shopping their discounted close out sales.  I even found discounted Japanese quilt books through both of these sites as well as at our local Joann's Fabric Store (using my monthly discount coupons) along with the heavy plastic tumbler quilt stencil that I had wanted but was unaffordable at full price!

So hang in there my fellow sewers and hold fast to your sewing dreams! Try these unique web sources.  You need not quit eating to keep yourself in fabric, books, patterns or threads. "Getting real" isn't for me!! I know that someday I might win the contest for the person who dies with the greatest collection of materials, patterns and notions and my family will host a wonderful estate sale for sewers for my Celebratory Life-Wake and I don't want them to ever feel bad about what I didn't get sewn as I will be in Sewer's Paradise. Meanwhile, I continue to "dream on" and create a little bit of heaven right in my own sewing studio!

 * Note that recently sewitsforsale experienced some computer glitches and so it may take a few days to get their total offerings back up on line.

Congratulations to This Month's Common-Thread Give-Away Winner!

Congratulations to Mary Butterfield who won Maria's Give-Away pot holders this month!! Do come back as every month there is a featured Common-Thread Artist who will give away a free sample of their work to the winner of the monthly drawing.Enjoy those pot holders Mary!!

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

Doctors are Clueless and So Am I 

I have had Lyme Disease for what seems like forever. I figured that it has been about forty eight years which equals approximately 2,496 weeks, which is getting very close to forever! My symptoms started when I first went away to college. Overwhelming fatigue and joint aches were my complaints, but then I was “burning the candle at both ends” and worked in a kitchen carrying heavy stacks of plates and partied and studied into the wee hours of the morning, so who wouldn't be tired, or have achy hands?

I lived in Colorado and I knew that ticks carried Rocky Mountain Spotted Fever.  Lyme wasn't even a consideration by my doctors or me. Lyme Disease was not a reality for most in the sixties, though it did exist, and was even tested from a prehistoric corpse found not long ago. To date there are no tick fences that have kept it from being everywhere, albeit its prevelence is greater in some areas than others. I just read that currently Vermont ranks second state in the US for highest prevalence of this disease, though I believe that it came with me when I moved from Colorado to Vermont over twenty years ago now.

When I sought early medical treatment, I was told that I needed more exercise, never mind that I had no car and walked everywhere!  More medical advice in the ensuing years seemed equally as useless: perhaps I had just overdone it; needed to have a better diet; or perhaps I was depressed and didn’t know it.  I did know that I ran short of the energy I needed to live my life fully and all medical advice focused on what I needed to do differently, though I appeared to be a healthy specimen, not unlike my peers (appearances deceive many, I have learned, especially doctors).

I heeded my doctor’s well-intended advice, as any young adult would. I simply carried on, tried to avoid excess, though likely NOT when it came to my passion for sweets or life and occasionally crashed and burned and slept for a day or two at a time and didn't seek more medical advice unless I felt like I couldn't live without it. (to be continued...)

(The illustration above is done by Hannah McMillen; 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.)

Sign up for Common-Thread Give-Away

Don't forget to leave a comment on Maria Wulf's blog, www.fullmoonfiberart.com any time today and tomorrow to win these incredible pot holders!

Sign up for September's Common Thread Give-Away

This month's Common Thread Give-Away Artist is Maria Wulf.  I have written much about her before, but it is never hard to find more to say about Maria.  The more I get to know her, the more she amazes me. She is married to Jon Katz, and together they live on Bedlam Farm 2.0.  I was going to write that they "run" it, but in truth, I believe that the sheep, donkeys, chickens, dogs and cat "run" this farm and Maria and Jon work for them.

Maria, though small in stature is big in might and resolve. She is the frequent subject of Jon's blogs, and is often featured in his farm photos, working hard, and tenderly loving and communicating with all the creatures on Bedlam Farm, including Jon.

Her artwork cannot be separated from her life, for it is all "at one" with her and her character. Whether it be in the photos of her little bits of art warming the windows of their farm house; or in what she calls "streaming", which is her unique free-flowing quilted art drawings in wall-hangings as well as functional art items; or in her fun and creative vintage hankie scarves; or in quilts that are creatively made of re-cycled fabrics, including family items with special memories, Maria's free-flowing, gentle spirit shines forth.

She is an artist with an eye that misses no nuance of psychology and humor and seems to sew it right into her work. I have always envied people that are able to live in the moment and find that Maria not only lives in the moment, but spontaneously transcribes it right into her work. Don't miss signing up for Maria's free give-away (pictured Monday on her website ) by simply going to www.fullmoonfiberart.com and leaving a comment any time Monday, Sept 2nd through Wednesday, Sept 4th. The winner of the drawing will be announced on Thursday, Sept 5th. While you are there browse and read her blogs to better get to know her and her work , and see her husband's website as well, (www.bedlamfarm.com)  so as to not miss learning about this quiet, gentle, farm-woman side of her as well!