I’ve always tried to watch what I say.

I’ve always been aware that words can’t be taken back; they can hurt, maim, and disfigure worse that some physical deeds.

I think I do a good job at not judging others. I had a happening yesterday that tells me otherwise.

Some of you know I’ve had major health issues. Trying to do my best for my parents and son and honestly, just staying alive and coping.

My parents just entered a nursing facility a bit ago, and while I am glad they are in a safe place, I’m scurrying trying to get the home, finances, bills, cleaning out everything….. and it’s more than overwhelming.

My parents had many caregivers over the past 3 years as they declined and did not want to leave their home. Being 2 hours away from me, I could not be up every day and work, take care of myself and my son. At another time, I will post more about medical mismanagement and predatory caregivers…. but now I’ll try to stay on track.

One of the last caregivers, (we’ll call her Sharon) was flaky. She was good for a bit. Promised my parents she would be there. Sharon was not reliable, hard to reach. Evasive. Yet, given a lot of items by my mother.

She assured her she would help and stick around, and told my parents, “I’ll be there for you two forever.”

Maybe she meant well. But it did not end well. She ghosted us all. Even when we needed to call her to retrieve her own items from the home.

I went with friends and my son yesterday to sort, move, and complete packing up for the local food pantry the remaining items at Mom and Dad’s house. Packing up a 2 story home of your parents is a task I wish on no one. Especially having to do it with illness.

We went to lunch at a fast food place, and a dear family friend was frustrated. She was witness to it all.

While she was not saying anything ugly, she was hurt and frustrated at Sharon. We discussed it, and there was a table across from us with a couple that sat and stared and stared at us.

I tried to ignore it, but it was blatant. It was making me uncomfortable. I actually thought about asking if I could help them. It was so strange. The got up and left fairly quickly.

We went back to the house, and I received a strange text. It was from Sharon’s boyfriend, and he said “to leave their things on the porch and to pray for Sharon because she was in the psych ward.”

Um. Is this truth? Is it attention seeking? I’m not sure.

So you know what I am worried about?

That these people, the staring couple- were family of Debbie.

I worry that I said anything derogatory about Sharon that could have been hurtful, especially if their loved one is in a psych ward.

Is it my overactive guilt-gene? Or quite possibly God tapping me on the shoulder, saying, “remember how words can pierce- you were wrong to speak ill of Sharon.”

Whatever it is…. I’m in need of a long, long vacation, or a psych visit myself.

I’m exhausted.

My post today is about scarves.

My last count was 42. That’s not counting my winter ones still in the attic.

I adore scarves! I have short ones, long ones, bright ones, handmade, knitted, crocheted, batik, möbius, ruanas, silk, floral, tribal. I have always shared that I can have 6 pieces of clothing, and 20 scarves, and have loads of outfits!

Through my bald head days during chemos for aggressive breast cancer, they became a wardrobe staple.

My scalp was so sore in the beginning! No one tells you how COLD your head will get with no hair on your noggin! I had offers of wigs.

Too hot. Too fussy.

Hats. I wore a few, but they were in the way at times, and scratchy.

So scarves it was. Then, the scarf gifting started!

Friends would go through their closets, go to thrift stores, and bring me handfuls of these gorgeous things. Even now, friends know I love the fabric slips of color.

Do you know, I remember who gave me each one?

Every one.

It’s like a fabric hug from those I love.

And I love them right back.

Life has been taking me on a long ride lately.

There are so many topics I need to jot down, and you, my friends, can choose to read them or not.

In July, my parents were moved into a nursing facility. It is a good one, and they have done well adjusting. They both have debilitating illnesses, and wanted to stay home as long as they could. We were able to do that for 8 years.

We are moving them to the first choice facility this week, where they will be closer to friends and, well, me. They are currently 2 hours 15 minutes away from me. Now they will only be 1.5 hours away. I am an only child, with no other immediate family. While I wistfully wonder how glorious it would be to have a compassionate sibling, I know it’s not always the actual scenario.

We have been through:

Medical mismanagement, many hospital stays, broken bones, many rehabs, heart attacks, strokes, trauma stays, stubbornness with not wanting to go to a facility when specialists pleaded, falls, ambulance calls, complete incompetence of the social services department, bad caregivers, ( could write a whole post on that alone) driving 6 hours alone just for some specialist appointments, constant paperwork, copies, banking, household management, paying all bills, scrambling to sell land to pay for care…. shopping, home upkeep.

I’m not sure how I did it. Sometimes, I did not do it well. Sometimes, I was resentful. I hate to say that, but I was. There were times I just wanted to go do something fun with my son. Working, being a mom and doing that was hard.

Then, I was diagnosed with aggressive breast cancer. During the hardest parts of the treatment, I had some help from their neighbors and my friends. I’m so grateful. Treatment was a marathon. My health never really recovered, and the prognosis is poor. I will always pray cancer will not return, and it’s difficult to try to manage health issues. Scans, biopsies, many medical appointments.

I love my parents very much. They have been such a blessing. I want to make it clear that being a caregiver in any capacity is selfless but comes with a price at times; we must be aware of even tiny ways we can help our friends and loved ones who are doing so.

 Here are some stats from caregiver.org:

It’s a tall order.

Possibly the most frustrating is “the system” in which people fall through the cracks. Social services asking for the same paperwork you sent 3 weeks ago. Waiting on calls back, being directed to The Area Office on Aging to be told to call an ombudsman for nursing home when you repeatedly tell the officers your loved one is at home. It’s maddening, and like a perpetual “who’s on first” skit from hell.

Dealing with limited help, loved ones depending on you, holding a job, trying to raise a child, financial hardship, health issues, constant pain, chemo brain…. I’m not sure it is survivable.

One thing I know: the system is broken in terms of helping the elderly. I’ve banged and beaten on door after door. Maybe this portion of the load has lifted a bit. I want them to be well, and safe and taken care of. I need to live, too.

I’ll keep on as long as God gives me the strength to do so. Only His grace has helped me this far.

My entrance into chronic illness has been like falling through a big hole in the floor. I am immensely grateful for a vibrant community of bloggers, writers and brave ones who share their stories and pave the way. Where would we be without these brave souls?

I am attempting to join in Sheryl Chan’s May link-up this month. She has been such a blessing to me in navigating my emotions and feelings in her sharing.

She has a blog, and posts frequently on Twitter, and is a voice for many of us who have been squelched, or are too weary to offer words.

Regrouping.

I was feeling good about my first visit to the rheumatologist. I had heard this man had a bedside manner akin to a rabid dog, and thought… you know? If he comes in and tells me to go take up running and take vitamin B6- I’m just going to sit there and cry.

I was surprised when he came in the room, in a rush–diagnosing me.

“Malar rash. All fibro points.” He rapid-fire asked me questions, looked at my bloodwork. Read over 2 hours of history painstakingly taken from his research assistant.

“Chronic Fatigue. Fibromyalgia. Most probable Lupus. Take these meds.”

I sat dumbfounded. He knew I had been through a grueling cancer battle. I can handle pain. But all this had taken a toll.

His final words as he left the room: “you are trying to be stronger than what you are.”

Yep. I cried.

While I felt validated… it was also frightening.

What??? I have these diseases? What do I do? What do I expect? Can I change it?

While his research assistant answered some of these questions, it was still so ambiguous. By my second appointment, I was unsure of so much.

“Does not have SLE(systemic lupus erythamatosis) at moment, but cannot tell when it will attack organs.”

What??? The non-SLE??

He was not interested that my malar rash was a bit better. (From the meds you put me on, dude.) He was not interested that I felt a bit better. He actually was condescending that I was trying to carefully watch my diet for foods that make inflammation worse.

He literally told me it did not matter what I ate. “Disease is disease”.

He argued with me over his desire to give me MANY steroid injections in my joints. I declined.

“Your bloodwork is good. Come back in September.” He said no more. Did not even look at me.

I felt dismissed. Not heard.

So yeah.

Regrouping. From this treatment from a specialist. From his callous demeanor.

Regrouping from all this autoimmune junk after aggressive cancer.

Finding new normals. Seeking a tribe who understands. Remodeling how I overextended for my loved ones and in my life until there was nothing left of me. Trudging through the emotional baggage of trying to take care of myself when I have not for so long.

Finding my new life.

I am just at the beginning.

Some days I’m up for it, other days, I need to sleep it off.

Onward.

“Don’t you dare take that anti-oxidant.”-Oncologist

“Stop that thyroid medicine at once! Try sea kelp.”- massage therapist

Having worked in holistic practices for years, there is a grand wall between main stream medicine and natural practitioners.

The natural health world incorporates modalities such as: Tai Chi. Yoga. Acupuncture. Chiropractic. Colonics. Reiki. Massage. Essential oils. Bach remedies. Alternative physical therapies.

While most traditional medicine practitioners balk at these practices, if you find any benefit and can afford the treatments: do them!

It’s about feeling better, right?

I know I have been very blessed by chiropractic. I would move even more like the tin man without mine!He is a blessing to me.

I also take some vitamins. Nothing crazy… I think a good quality multi-vitamin is a great thing. Nutrition. Getting the body moving. All good.

But, while these two schools of thought duke it out on the pavement, we are conflicted about our choices. Puzzled.

One of the biggest obstacles in seeking natural health alternatives is the cost. Most of these practitioners and treatments are expensive. They generally do not take insurance.

$45 per chiropractic session. $70 for a massage. $150 for a set of yoga classes. $200 per Asyra session, or acupuncture.

While these are super alternatives to try and help maintain our lives or manage pain; it’s not what our insurance will pay for.

Many chronic illness sufferers are working limited hours, or not at all. The extra money in our pockets is most likely used for living expenses and not much else.

While using holistic, natural alternatives is a blessing, I am totally supporting what works. I just wish these two schools of thought could create a Switzerland. Reach across the chasm shake hands, put their heads together and find the best treatment for individuals.

Watching someone you love die little by little is excruciating.

The helplessness. The guilt. The sadness.

Redirecting thoughts to who they still ARE, not the deficits. Not the many ways their bodies fail them every day.

Both of my dear parents are on hospice, at the same time.

I am an only child, with very little family. Walking this path has been excruciating and lonely. It’s not just the physical part of witnessing the decline; seeing them in pain. It’s the loss of my family.

Loss of my Dad’s belly laugh. His twinkling eyes. The timber of his voice during his powerful sermons in the pulpit. The way he would walk around the house and sing songs by Sam Cooke, or Gordon Lightfoot. Seeing him leave the house for hours, going to sit and pray at the hospital with Mrs. Miles as she waits on doctor’s diagnosis.

The loss of my Mom’s quick wit. Her fast pace…. her beautiful long legs dancing with me to Michael Jackson’s Thriller album. Her capable hands sewing dresses, curtains…. making things for her home. Her gifted way of connecting with mentally challenged young people, bringing them out of their shell.

I am so blessed to have them. For their continued presence here on this planet.

I just want the remaining time they have here to not be so hard.

I know our destination to the place my Heavenly Father reigns is our goal. I know in heaven there will be no pain. No suffering.

Lord, please keep our eyes on you.

Boz Skaggs probably never thought his awesome song would be used this way!

Recently, I was diagnosed with SLE and other autoimmune issues with more answers to come. I’ll share at another time the process, the confusion and the ah-ha moments, but for now, I am pondering my vehicle.

Do you you ever wonder how many of us suffering with AI issues extended themselves way too far over the years for others, to find their bodies were not willing to “sacrifice themselves any longer” as much as our desire?

Does that make sense? It’s as if my body kept giving signals like a car:

Engine lights on. Needs gas. Right tire is flat….. and I kept driving like a maniac because they all needed me to. Now, my jalopy may not be fixable.

What to do? I can’t trade this one in.

The transmission is close to being shot.

It’s not the dings, paint scuffs that bother me: that brings my vehicle character.

It’s not that it’s an older model.

It’s the feeling like as reliable as old Sally has been, as hard as I pushed her over the years …. in bad weather, with the fuel light on- she never let me down.

Until now.

Well now, I can’t find parts for her.

I can still drive her at times, but she is unreliable.

Uncomfortable. And I feel like she might give out at any time.

No AAA to call.

Time to call the wrecker and see what is salvageable.

Covered dish dinners.

Are you old enough to remember them?

Having been raised in Virginia it is quite a southern tradition to have dinners after church functions. And let me tell you….

The food was incredible!

You know, it was more than just food.

It was a place and time for old-fashioned fellowship.

Miss Lizzy could share her prized corn pudding recipe. Janet’s sweet potato casserole had more pecan crust topping, but Hilda’s was sweeter. And Miss Jean’s chocolate cake? Who whee! It was the best thing you’d eat all week!

Those dinners were more. Mr Leland did not have to go home so soon to an empty house. The Taylor’s could take home extra plates, and a few bags were strategically placed in the back seat of their worn station wagon…. Heavenly help since Mr. Taylor lost his job. The lonely could sit at a table once again like the family remembered from days long gone, children long grown.

The pastor and his family could visit, and be loved on. (I know this well, as I was a child of a pastor, and those dinners were a blessing to us.) This was like the Norman Rockwell paintings full of family and sweet expressions, laughter and chatter.

Fellowship. Neighboring. Community.

Like Jesus gathering his tribe in the upper room. Misfits, like us…gathered before a big God, in the presence of a perfect Christ. Giving great thanks.

Picture a table such as this in our heavenly home. One where we enter the Sweet communion hall of the King…and see our beautiful Jesus at the head, welcoming us home.

I hope I’m there in time for one of Miss Mattie’s rolls.

Worn out.

Exhausted.

Have you ever been here?

I’m not talking about needing a few hours of sleep; we’re talking soul tired.

Praying for monies to stretch into the next month, a loved one’s health to improve, a prodigal child to return. There are seasons and circumstances in life that tire us right down to the nitty-gritty of our being.

I have been blessed to start a Bible study penned by author/actor/evangelist Priscilla Shirer, The Armor of God. It’s been eye- opening. It has shed light on struggles I have. The momma of them all: being soul-tired.

The evil one schemes against me. He knows exactly where and how to target me.

One of the best ways to get Holli? Wear her out.

Wear her down to a bloody nub with constant running, limited sleep, and worry.

I am suiting up, and learning the battle plan.

“I am worn out waiting for your rescue, but I have put my hope in your word. Psalm 119:81

I’m fist- pumping over the confirmation that David felt worn out, too. Isn’t it affirming when we find a mirror of our words or feelings in the Word? The part that tells me where my action is though, is the “but”.  I have to put hope in the Word. I have to apply it. While waiting, I need to throw myself in scripture.  My answer’s in the “but”.

A spanking-new blog.

Fresh space to put ponderings and hash out the thoughts I have rolling around like B-B’s in the plastic dollar store games we used to get as a kid.

Hang with me if you are brave, and you never know what we might get into.