I’m not going to lie

Just when you think you have figured something out, it’s really maddening to realize that there is more to know and you simply are clueless!

laxative, medical humor, gallows humor, Lyme disease, chronic lyme, catamenial seizures, non-epileptic seizures, coping with illness, chronic illness Hope Beyone

Hi, my name is Julie and I am the reluctant writer behind this blog after I got sick on October 11, 2011 and never recovered. I started my journey here online in August of 2012 after reading the blogs of 2 acquaintances. Journaling had been a life-long practice of mine, beginning with a diary that I wrote as a girl. The cover was shiny and flowery in white, pinks and reds. It had a little flap over the edge of the pages that I could lock with a tiny key. That still wasn’t enough to keep out my brother, Mike, to my horror! I don’t recall what I wrote but I do recall that he teased me mercilessly just the same. After that I got better at hiding my private things.

Flash forward many dozen years and the trend these days is to pour your heart out in a blog to the watchful eyes of the world. Just when you think that no one really cares about your stubbed toe or smashed fender, you realize that some stealth follower from another part of the world relates and responds to you in kind. I find it a kinda special occurrence and a reminder of our shared humanity. Still there are some topics better left untouched and facts left unsaid of course!

Be careful in sharing good news. If you are disabled, the government might use your day of reprieve as evidence against you that your life is restored when clearly it is not. That examiner probably won’t read the hundreds of other blog entries that describe some personal hell of one type or another. Like the convulsive episode I had this afternoon that yielded only after a prescription intervention, followed by a 5-hour nap. Or the second seizure attack a couple of hours later that yielded only after another type of remedy that actually worked this time. Thank the Lord that my beloved was home and willing to help me. I am grateful. And it all came just hours after helping our local Park while sitting here alone through the night to update their website: a good thingy!

If you happen to have dysfunctional family members or friends reading your blog then there might be entirely different consequences to complaining about blah, blah, blah over and over again. To this person I say well then don’t read my blog or (limited) Facebook posts honey! How about minding your own business a little more? Isn’t keeping a positive attitude, getting up in the morning, saving enough money in the bank for emergencies, and the like hard enough to manage these days than to meddle in someone else’s daily drama too? Do you really think I would fake this hell for self aggrandizement? I am not that kind of a sick puppy lady! You’ve got it all backwards. I’d rather remain anonymous or conversely, receive recognition for an admirable accomplishment. Like raising a rank as a Master Gardener largely from publishing our county’s newsletter in the middle of the night. Or volunteering in a public garden despite the heat exhaustion that came alongside many of the hours out there. And it all came on the hundreds of days each year when I did not have to crash back into bed, unable to function normally. Got it?

So where does a thyroid biopsy to rule out cancer fit into this muddied scenario? Will having major surgery thereafter legitimize my enduring serious illness and the varying opinions of persons on the sidelines cheering at times or throwing barbs at others? Nope. Others simply give witness to your life for the parts that he or she can see, to the extent that he or she can step outside of his or her own story. And none of us can do that fully. The peeps who truly love you will come closer to a sense of understanding. That is a gift for sure. However, it is only in a personal relationship with the Lord, Jesus Christ, in a life surrendered to Him that you will feel completely validated, loved, understood, accepted, and forgiven. He created you and ordains all that you are, what happens, when your life begins, and when your life will end. All for a purpose greater than anyone else will ever know. Lord willing, He will grant you insight into some of your life’s meaning along the journey and be merciful. He loves you so!

I’m not going to lie. Everything from what other people have thought and will think about me to questioning the Lord’s plan for my life is smeared across a messy collection of hundreds of blogs over these 8 years of chronic illness. Will it be cancer on top of everything else? Cancer: the one diagnosis that suddenly legitimizes one’s fears and suffering and need for compassion? So what. This stuff could really mess with my head. But what is really going on inside my mind? Not that much really. I feel like my Jesus is simply carrying me through it all. I feel numb inside and out. Often my thoughts are blank. When the tears come they are shallow, like a reservoir running dry after years of siphoning off for this trauma or that one. There’s not much left in my fuel tank. With no catharsis left for my angst, one might wonder who or what will nourish me now?

The answer would have to be the Lord Himself. Hold me please. I hereby place my journals, my blog, my illness, my life in your lap. Cover the Gentle Readers out there with your loving care too. Send forth your angels and Holy Spirit to care for, to guide us all. This is a tough world to live in these days. The suffering of your saints is great. We need you NOW!

Freedom from Rain

Rainy weather working its foggy magic on a landscape is beautiful. A rainy day encourages introspection. Or at the very least a nap. I love the rain in all of its spirited and benign forms. But we have had rain day after day without much respite. This is rain of a different sort. Too much rain foments rot both above and below ground. Too much rain spoils blooms. Too much rain dampens the spirit. We have had all of the aforementioned. 

Deborah Silver

Is it the rain or the cold that gets to my weary bones far beyond the havoc it reigns in the garden landscape?

Perhaps the dry-out late in July that parches the land through the Fall is even worse, when my soul aches for a simple cup of relief?

How will I look back on this season of my own life where moments of respite, nourished from the right care gives way to occasional relapse and now tragedy?

Alas my dear brother, survived with me but not with our youngest, Rob, lies in a coma amidst the sterile hum of machines you could never repair

In your appliance servicing days let alone fix your own broken spirit from never quite fitting into the affections of our Dad but perhaps too much by our Mom?

What is Mike’s world like right now: can he hear the buzz, taste the plastic tube down his throat, smell the air now sanitized and finally free of cigarette smoke?

I ache for you as I did for Rob. You two never did get the advantages I had as the oldest nor fight long enough for better despite our childhood traumas.

Or perhaps that first year of my life cinched it when there was more love to give in both bloodlines . . . oh how I wish I could go back and carve more out for you!

The Lord grieves for us three as now you are now in the juxtaposition from time to eternity. It’s just not how He meant it to be you know.

I will love you forever Mike. Godspeed if this is the end. Go to your Maker and live at last, totally freeeeeeeeeeeeeeeeeeeeee!!!

A rain garden rises from the soil and rocks, bringing beauty and purification. Consider this a sign in the natural world of His creation that imitates the glory of a life surrendered to Christ.

A Rain Garden in the Making 8.4.18

Jumping from a home landscape to a specialized garden in the community is a huge leap on many levels.  The size and the scope of the project just multiplied by too many factors to count.  I have barely pitched the project to the President of the Board of the 501c3 that owns the Community Park and drawn up a basic Site Plan.  Just 6 days later, there is a 22 x 26 hole dug in the ground!  Wait, what?

rain garden, site plan, design, storm water, runoff, public park, initial, proposal, draft, drainage
Initial Site Plan Huntertown Family Park Rain Garden, August 4, 2018

When I heard that there would be a Kubota tractor available to scratch-dig the rock hard base of the proposed Rain Garden, I had to move quickly!  I was going to try to attend the Community Park work day on Saturday to get a sense of how things worked, meet some of the volunteers, and learn more about the park facilities.  The Pres gave me a more detailed tour of the grounds, introduced me to “the guys,” shared some more history and vision, then mentioned that they would be finishing that afternoon, the prep for a sidewalk adjacent to the proposed rain garden area.  The tractor would be available after that, wow, in about 3 hours!

I noticed some mega weeds around the entrance to the park so I grabbed my shovel to do some impromptu weeding; I did what I could in the hot sun.  A really nice man came over from where he and his wife were staying with family across the street and offered to donate some mulch to the Park.  His brother-in-law had just bought a local landscape supply business and this man wanted to know if we needed anything before an event coming up the next weekend.  I gave him the President’s contact information and mentioned the rain garden project ’cause, hey, there are already mountains of mulch already on the property but not landscape-quality; tell him Julie would love the offer of some “dark hardwood mulch!”  (Later the Pres just smiled; I’ll bet it’s a go!)  By the time I left the park, I had met this man’s wife who became my first volunteer for the Rain Garden Project.

Off to Walmart I went to pick up some marking paint for the Pres then came home to prepare some treats for these amazing men.  My energy was waning but some kind of momentum had taken over.  A bunch of food, a glass of chicken bone broth and a ton of water helped revive me enough to keep going!  I had most of the ingredients at home for chocolate cookies and a gallon of lemonade; surely some “appreciation treats” would be welcome as temperatures soared above 91 degrees?  The conditions were tough on everyone for sure.  By 1:30 p.m. I was back at the park to hang out in the shade of the picnic shelters and learn.

I am learning as much about general carpentry and construction as I am about how members of a community can work together, how much fun these men have just hanging out with each other no matter what they are doing.  Most of them are retired from the trades and in their 40’s and 50’s.  Building this Community Park is how they love to spend their free time together after breakfast at the Kitchen Table restaurant down the street.  Perhaps it has a lot to do with the years they all once worked together in one way or another and the small town friendliness I had never witnessed up close from our housing addition across the highway.  The Pres treated all of them like contractors, co-workers, brothers, and sons alike.  It was beautiful to witness as they helped to craft the public facility already enjoyed by dozens of folks every day.  They worked REALLY HARD that day in their respective projects!

Kubota, rain garden, community, project, Huntertown, family, park, runoff, storm water, digging, construction, volunteers

About 3:00 p.m., the man in the Kubota tractor was ready to scratch-up the base of the rain garden.  Its claw-bucket digging down few inches deep didn’t loosen up the nasty crab grass in the compacted clay/sand mix so down a full foot he had to go.  It took about 30 minutes to complete the 22 x 26 foot area, much like the shape of a baseball diamond in miniature.  As I do additional calculations we might need to increase the size of the rain garden yet that is still bigger than the initial site plan noted above.  I realized that those dirt clods would be rock hard within half a day so I tried to weed a few chunks of those grass plants as I could in the searing heat . . . with a couple of breaks just to cool off a bit.  It took a long time, leaving much more for another day and team of volunteers.  Even I was munching on a chocolate cookie and drinking lemonade before the day was done!  🙂

Sunday morning the guys would be meeting again for breakfast at the Kitchen Table before finishing adding the mesh to the sidewalk plus other preparations before the delivery of concrete on Monday by 2:00 p.m.  I was glad that the Pres had shared with me about the sidewalk so I could ask if they cold add the crushed limestone instead of dirt along the outer edge; this would match the other stone edge already in place along what would become the top of periphery of the rain garden (i.e. the front horizontal and right perpendicular edges in the photo above).  It might not be the most aesthetic choice of materials however those two stone borders would definitely be easier to maintain than a berm made of dirt that would eventually grow weeds.  While I have begun seeking  volunteers from the Master Gardener and Native Gardener groups locally to help build and maintain the the rain garden, I see signs all over the park of “good idea” projects that don’t look as good anymore, lost to poor follow-up.  Low maintenance must be part of this garden design!

Some interest in the rain garden project grew among the guys, just by being there, hanging out, and helping here and there where I could.  One gentleman told a story of how he used Roundup to kill all the grass in his yard before re-planting his lawn.  So we talked about the effect of glyphosate on beneficial insects, how it can effect plants in the area for up to 6 months, and how it would basically not work with the project here.  Beneficial insects pollinate the flowers of the tap-rooted plants that hold and filter the water runoff plus help prevent all the flooding that lasts for days on this side of the bathroom building after heavy rains.  No insects, no healthy plants, no rain garden.  Another man suggested using the extra pavers they had on the property which we could use for the outer border (i.e. to form the berm that prevents spillover; we would add drainage windows too).  Even the Pres said he could probably work with a local landscaping company to build a flagstone path through the area which would enhance  interest for visitors in addition to helping with weeding and such.  I agreed, taking lots of mental notes.  Chances are that I will see these hardworking men again . . .

rain garden, Huntertown, family, park, runoff, storm water, native plants, Monarch butterfly, community, project

So tonight I put together a flyer about the Community Family Park Rain Garden project.  How poetic to set in motion something like this that will actually come to fruition through the “organic” interest and talents of so many wonderful folks in my community.  Momentum has started as I continue to recover from a setback in July.  So grateful to have something else focus on:  my own Horticulture Therapy!  The flyer will likely become a temporary sign along the edge of our big dirt hole so that folks attending the Heritage Festival this weekend will know that something really cool is about to happen there soon.  Maybe some will join in and help?  I feel really privileged and honored to have this opportunity that came about just by taking a little online class, just by making a little post on Facebook, .  There is so much more going on here and it transcends me for sure.

Then again, that is always the case now isn’t it Gentle Reader?  Yeah God!  JJ

Isaiah 58:11

11 The LORD will guide you always; he will satisfy your needs in a sun-scorched land and will strengthen your frame. You will be like a well-watered garden, like a spring whose waters never fail.

 

It wasn’t meant to be

happy place, home, where the heart is, house, Christian, in the arms of Jesus
I placed a special welcome from her favorite store across the country in her room. Did she notice?

Maybe I did too much in my own strength, albeit waning and waxing until the day came.

Maybe instead it was obedience to the Lord that so many details were honored in anticipation of a good result, a finishing well.

Maybe the one that did not get cared for along the way was my own flesh and blood, although I really tried . . .

Maybe our need for firmness and clarity covered my love for her.

Maybe now that I am purging everything I can to clear my mind, my Lord will let me know what happened with this caregiver thingy gone awry.

Maybe there simply was no way this arrangement could succeed no matter how hard we tried.

Maybe there will be restoration one day, maybe not.

For today, I still grieve.

JJ

No Place to Go

Steve pic of A Lori stuff 7.27.18

This morning as I watched my gracious husband take pictures of the items a family member had claimed were stolen, I realized I had no other place to go.

Who would understand the betrayal after having suffered a severe health setback trying to care?

Who would understand that every level of commitment virtually every day this entire year would end with them throwing my heart against a brick wall?

Who would know the many levels of loss that continue as I seek treatment to get my body back to baseline again?

Who would understand that grieving this failure, this dead end would rekindle the sorrow from heartaches in the not-so-distant past as well?

How does that come to any kind of closure when your heart is crying, your thoughts are heavy, your body is aching, your world is smaller, and there are piles of things to do around you?

There is only one place to go:  to the One Who grieves for my pain, Who grieved tears of living blood for the sorrows of us all:  more than I will ever know.

My Savior, Jesus Christ, faced ridicule, betrayal, torture, and unjust punishment that cost Him His life so that I may be free one day of lesser losses that come with this life.

Just gotta lie at the foot of His cross for as long as it takes until the burdens are lighter, so that I may go on even better somehow.

My joy is tiny today.  My Jesus is bigger than life itself.

Jesus, take the wheel.

JJ