Entry Forty Six

April 26, 2018

The Best Form of Transportation

Entry Forty Seven

May 4th through May 6th, 2018

Startling Realization

This last weekend, my husband and I, my brother and our mother went camping at a foothills lake. The lake is at an elevation of 561 feet above sea level, so it is the same temperature as what we have in the valley. The temps this weekend were in the 90’s.

We always go camping on Mother’s Day. It is my mother’s choice to go to this particular lake, as she loves it there. However, we had to reschedule our Mother’s Day weekend, as we have a wedding to attend on the Friday of Mother’s Day weekend.

In the days leading up to our camping weekend, I prayed that the weather forecast would reflect cooler climes, but it wasn’t meant to be.

Since I can remember, I have been extremely heat sensitive. As a child in elementary school, my mom had to frequently bring me home from school, after  I’d fall ill during physical education classes when the temps were unrelentingly hot.

Nothing has changed; I get sick when I spend time in the hot summer days and nights. Being as I cannot escape having to work outside doing yard work (e.g. weeding, watering, pruning, planting and transplanting, etc.) or doing something with the dogs (e.g. grooming and cleaning up after them) and even my body trying to accustom itself to an early roasting Spring or the desert heat of Summer; my body betrays me.

We arrived at the lake in the early afternoon and began to set up camp. Between the four of us, we had two campsites. My mother and brother took the lower, larger campsite. We took the campsite just up the hill; it had little shade and was filled with foxtails, as was the campsite my mother chose.

We brought our Golden Retriever and our little Chihuahua/Doxie/Pekinese/and parts unknown blind boy. This was their first camping trip, ever, (and they did so well.) Not wanting them to get inundated with foxtails, I set to removing as many as I could in my mother’s site, as that is where we would be spending the majority of our time.

I was quickly succumbing to the heat and I found when I had made a few trips from our campground to my Mom’s, I was having great difficulty negotiating the up and down terrain. I couldn’t go on. I needed a cane…

I have canes at home that I’ve accumulated from knee surges, but I never dreamed I’d need them for camping, or much of anything else for that matter. And I never wanted to be in a place to need anything to help me along.

So, my husband drove us a distance about halfway home from the lake, so I could purchase a suitable cane. In many ways this mortified me. The only other time I had to use a cane was after knees surgeries.

Both knees have been operated on, my left knee twice, my right knee once. My knees are a’goner. The only option for me is total knee replacement, which I am not too fond of and given my current medical condition, surgery might not be an option for me.

Well, between crummy knees and being overwhelmed by the heat, I was having a hard time of it. I also found my strength waning quickly. I felt like like a woman 30 years older.  It was still Friday, in the late afternoon, and I labored to just get around; climbing up the hill to the restroom, moving between our two campgrounds, moving items from one campground to the other. I was struggling to simply breathe. I had to stop to catch my breath; big heaving, gulping breaths of air.

With Sjogren’s, I had to acclimate to “The New Me” and doing that was rough. But now, beyond that – None of this was me; the me I know myself to be! The me that would help my husband move and carry heavy items from place to place. The me who loves to explore the nature trail, or walk to the other campgrounds around the lake. The me who would accompany my brother on a hike to Buzzard’s Roost. The me who would take the dogs for a nice walk around the campgrounds in the evening. The me who would take the dogs to the water in the afternoon to play fetch and then we’d all go swimming. I could do none of this – and it was beyond discouraging and sad. I am wrung out, like an old wash rag; used until it is threadbare and tattered.

But, I was able to enjoy fiery sunsets that painted the clouds aflame with pink, coral, orange, and lavender fire. As the sun set, I would shiver with joy hearing the coyotes cry out and sing in the foothills surrounding the lake. As darkness fell, I’d watch and listen for the arrival of bats; and the screech and hoots of owls. I could sit ‘round the campfire at night and espy the light of campfires and lanterns as they spread out over the lake’s surface, rippling across the waves from one shore to other. And I’d luxuriate in the cooling balm of night air. Additionally, the food we had was quite yummy, overall.

Yet, feeling that my body had betrayed me, I longed for the weekend to be over with. Such a contradiction, because I’d thought to have a weekend savoring the time with my family, human and furry. Expected to have a weekend exploring, swimming, and being able to pitch in with all the chores. It was just not to be. And I feel completely crappy about it. It was a shocker for me! The bald realization, and the huge let down. I don’t think my family realizes how this impacted me; and that touches me, in my soul, filling me with a startling emptiness.

I do believe, in my heart had the weather been cool, I would not have been as handicapped. The thing is, I have plans for other outings; vacations that will require of me the physical stamina and strength to make it through to the end of our trip. And I do so want to enjoy those vacation plans! Gonna hope I can and will…

Entry Forty Eight

May 10, 2018

I feel encapsulated, cut off …TIRED

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Entry Forty Nine

May 18, 2018

Another New Acceptance…

(Metaphorically speaking, a harder pill to take than the cancer drugs I get.)
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When I knew something was seriously wrong with me these past two and a half decades, I fought to find out what is was. When I was finally diagnosed with Sjogren’s, I was both elated and deflated. I finally had my answer, but it came with a harrowing dictate – “Accept the New Normal You” that will be your life until you die.

This was compounded by the already “on-board” diagnosis of Hypoparathyroidism I received in 2009. I had struggled to get that diagnosis, as well, it just didn’t take as long as the Sjogren’s detection.

Acknowledging the diagnoses was easy for me to do, but admitting I had medical conditions that will forever prescribe a different life’s direction was like jogging through a corridor of walls, and running, not through the open passageway, but full bore into each wall in my path.

The camping trip to the lake was an eye-opening lesson on the “New, New Normal and Future Me.”

I shared my shock and concerns with my oncologist; still not believing “this is how it is going to be” for me. She responded with thoughtful and eloquent replies…

“I am amazed how much physical activity you could do – but it is also the main reason you are doing OK now rather than what could be worse. I understand how hard it is to face the reality of fatigue and not being able to keep up what your activity level was.

“The best level of activity is what we say as much as you can tolerate – not to push yourself up to 100% but up to 70-80% of your peak endurance then rest.

“Change course of the life we have planned is an essential part of accepting the life that is waiting for us.

“You are a smart and brave person Kathy, it is time to accept yourself and what you can do physically now and later, rather than what you have and could have done in the past.

“Medications have side effects but your cancer treatment is keeping your cancer under control and is extending your life.

“Physical stamina has limit on every one, whether with or without cancer; the one thing that can be limitless is our spirit.

“I hope you look for ways to extend your spirit in addition to your physical stamina.”

Right now, I feel like the dog in the basket. Unable to carry my own weight, as it were, but looking to enjoy the ride, as well.

If I have learned anything, it is that our dogs are our best life coaches. “Dogs do not ponder the length of their existence here on this planet. They do not bemoan their overall shorter-than-human life-span. Instead, they enjoy each moment as if it were a new day! ” © K. Pippig

I am currently looking into healthy energy drinks (Bang) and at new vitamins, homeopathic approaches, and supplements that may extend my strength and stamina, as well as at any other healthy options I can find… I am also searching for ways to extend my spiritual strength and stamina… I have a great start: I’ve got a supportive husband, a caring furry family, human family and friends, and the Lord!

 

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Questions & Answers

How do you manage, cope, accept, and move on?
How do you keep your sanity?

Let me know through the “Contact” feature on the top right hand area of this page – or – through the “Comment” feature at the bottom of this page.

Please; I’d very much like to know!

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Entry Fifty

Roller Coaster

This roller coaster ride, that is my life at present, is the scariest, the most unpredictable, and the craziest roller coaster I have ever been on. It is an “E” ticket ride; the cream of the crop of adventurous rides, for all you Disney enthusiasts. It is all the roller coaster rides at Disneyland rolled into one humongous roller coaster.

As you have noticed, if you have followed my blog entries – I am on an emotional, physical, mental, and medical roller coaster that is one nutso experience! It is all rushing so quickly, that I barely have the time to collect myself enough to analyze what’s happening or how to best ride it through, while still keeping my seat.

Because I know this rough-and-tumble ride is reflected in my entries, I wished to make a statement about it here, to remind you – just in case you may wonder, “What is going on with her?”

Me? I’m just bracing myself and holding on for dear life! Time for trying to make sense of it later, while nevertheless, caught up in the THRILL!

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I fervently hope this blog is being read by others and that they find something here that is beneficial to them. Whether they have cancer or they have a loved one with cancer. Perhaps, even someone in the medical field, the social welfare field, or some other professional field may find something here they can share with their patients or clients.

And lastly, I hope someone who knows me, is reading this, as I think it will help them to understand a bit of who I am and what a person with cancer is living with. If, however, my family and closest friends are thinking, “I will read it after she is gone. I haven’t the time, desire, or strength of mind to read it now; but after… I should have all the time in the world, to read it and process it.” That won’t be the case, because when all the time in the world, for me, is gone, so shall be my blogs, my social media sites; FaceBook, Twitter, InstaGram, and websites. After I am gone, the time for any of this mattering will be gone, too.

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Eleventh Page