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!

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!

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.)

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!

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!

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.)