When first received, you fill it up

It fills with air, it grows, expands

And suddenly it’s moving up

So quick you tie it on your hand.

From there you keep it safely by

The knot, so tight it will stay close

Yet always pulling off to fly

You wonder if it loves you most.

When winds grow strong, when thunder strikes

It pulls much harder on your wrist

You hold it fast you grip it tight

But it keeps pulling from your fist.

Then suddenly the rain just settles

The cloudy sky now shining blue

Your big balloon is small and subtle

Finally drifting back towards you.

You take a breath through tired lungs

With all your effort it expands

For just a moment, it belongs

Til, ever slight, pulls from your hands.

Harmonious Tidal

Systematic Sclerosis is a complicated disease. Its prognosis is typically 5-10 years depending on the severity. What we’ve come to discover with all this is numbers don’t really mean anything. It’s such an unknown disease, the “how” of it all isn’t really understood. This leaves both of us in a constant wave moving from “we’re fine” to “are we out of time?”. It’s not easy coping with these feelings, but it’s even more challenging to sync the waves.

When we were first given the diagnosis my wife had already ridden the wave significantly. She’d been one step ahead of the doctors through the entire process, but even though I’d heard her mention Systematic Sclerosis I was only just getting on the wave when the doctor suggested the diagnosis. I was still only just catching it when the next doctor started her on extreme medicines. When I look back on those times, it seems like a fog. I understood what was happening but it seemed like it had come on quickly. In reality we’d spend years with this and as a bystander I had simply been ignorant of its constant attacking.

This is the trouble with the waves of emotion. When you’re synced up emotionally it can cause issues. You’re both falling into despair, lashing out in anger with the stress of wonder. On the other side, you both let go of your needs because you’re sure everything is going to be alright. The benefits of riding the waves together, you feel affirmed in your partner. You feel like they understand your concerns and struggles. You feel like your plans of action work together for both your benefit. It can be wonderful, but it can also be detrimental.

When your waves are out of sync a new batch of problems arise. Suddenly you feel like you’re the only one taking the problem seriously. You wonder if they’ve given up. You wonder if they feel like their life will be better without you, or that you just aren’t worth holding on for. You feel like you’re making every effort to move forward to a position that will help, only to be met with a mediocre response. There are still positives to riding the opposite side of the wave. You are able to reach down and pull each other out. You’re able to remind each other of the importance of moving forward while also seeing both sides of each decision.

It is challenging to ride the waves, because you have to learn how to positively impact each other no matter what side of the wave you’re riding. Our relationship feels like a guitar constantly shifting out of tune. Each day we are tuning different strings only to realize another string is out of tune. That’s what love really is though, the constant tuning of our harmony. Challenges make it harder to keep everything in tune, but keeping everything in tune is not the challenge. Keeping everything in tune is a joy.

I love my wife. This challenge has drawn us closer together with each discovery. She is strong. She is wise. She is determined. She works everyday to find answers. She works everyday through pain and emotional struggles. At the end of the day, after every challenge she faces, after every pain, sorrow, fear, and anger, she still looks back on her day and wonders what she could do to be better, no matter how much I try and convince her she’s already wonderful. Together we ride these waves and together we stay in tune.

The Uncertainty Of Knowing

Writing this blog has been good for me. It has really given me a chance to look over the challenges my family has faced, but the truth is I’ve slowly moved myself further and further away from the issue. I guess in a way it allowed me to continue writing without getting sucked into the whirlpool of reality. It hasn’t been easy.

This all began with my wife’s bowels not working, then spiraled. Her fingers changed colors, her muscles weakened, she had trouble breathing, she had constant chest pain, she had back pain, she had swollen lymph nodes. That’s only a handful of the problems she faced and continues to face.  On top of the medical issues she had multiple CT Scans, a biopsy of the lymph nodes, X-rays of her limbs, and blood tests, over and over again. We’ve been worried its lymphoma, thyroid cancer, lupus or another autoimmune disorder, and even worried it was somehow nothing at all.

Systematic Sclerosis was both an answer to prayer and a nightmare. Yes, we knew now what we were up against, but we also knew what we were up against. All the testing, all the issues, all the wondering was finally given a name, but even then, even when we finally got a reason for it all, we weren’t certain.

My wife had mentioned Systematic Sclerosis to her doctor at the very beginning of this road, but he had written it off as a rare disease she was unlikely to have. Moments like that defined my wife’s future. She would go on to distrust a lot of the doctors, and, while still taking guidance on care, trusting herself more. Her entire diet changed because of this disease. It was her way of taking control of the situation. It wasn’t till this September she had a doctor official suggest a diet change for better symptom control.

I admire everything she’s done with this journey. It hasn’t been easy on either of us, but I have no idea how hard it has been on her, mostly because she wears her burdens so seamlessly. She doesn’t always see it that way, and there have certainly been times the challenge has been too much to bear. It was that strong attitude that got a doctor to do a CT of her lymph nodes. That CT found issues in her thyroid. Issues that are, in real time, becoming very important in our path forward. But at that time they were only worried about lymphoma so they biopsied the lymph nodes. It was because of that negative result of lymphoma we were forced to come full circle. Because of that test the doctor was forced to take more blood and do more tests, tests that resulted in the findings of Systematic Sclerosis.

How do you put all that into words? How do you describe the uncertainty of it all? You can’t. You want to hope, but if you hope too much it will look like you don’t care. You want to worry, but if you worry too much it will look like you’re falling into despair. What you’re left with is sitting in the kitchen washing the dishes, and a thought pops into your head about how much you love your family. You take a moment to feel that love, but suddenly it evolves into worry. You start to worry that your wife isn’t just napping upstairs, maybe she’s gone, maybe her spirit is standing with you trying to help you see the beauty before your life changes forever. You want to go check. You want to make sure everything’s okay, but she’s resting. You say to yourself over and over again she’s just resting, while the back of your mind wonders if she might be dying and needs you to come be with her in the end.

Despite knowing so much, we know so little. Tomorrow could be just a normal day, or the last day. Isn’t that always true though? That’s the reality of life, but this feels unfair. You don’t really want to know, but you also need to know. It can’t be better without knowing, but knowing doesn’t make it better. That’s the uncertainty of it all. That’s what Systematic Sclerosis is, a circle of can it help vs will it help. Do I have a lot of time or no time? Oh, the uncertainty of knowing.

This particular post has been a challenge to write. Not that I’ve been stewing over it wondering what to say, but trying to explain without over explaining. You’d think in a blog that I write myself with no actual limitations on how much I write, I’d feel the freedom to elaborate fully. The truth is, with a sufficient elaboration, the entirety of what has happened on our road to Tennessee could probably be a book. I know my wife has enough material on her own for that.

Last year we finally found a path forward. A doctor finally looked at my wife with some sense of concern and worked hard to get us moving. Being taken seriously is quite the motivation. It was our first sense of hope for a while. I can’t fully discount the doctors behind us, but the reality was they fixed what they could and let her go. He got us into specialists, he seemed engaged in my wife’s health even when she was messaging him, and he seemed to genuinely want to find the problem. That ended up being the problem.

The doctor had done it. He’d finally determined what he believed was her issue, then disappeared. I wish I could say figuratively, but literally the guy seemed to disappear. He put a life altering “possible” diagnosis and the next appointment we’re starting over with a new doctor. I still can’t believe how it all happened when I look back at it. This doctor, who we attributed the findings of my wife’s disease, walked away from us.

Doctors see a million patients. I get it. But this was not just some issue with the thyroid he couldn’t do anything about. This is a systematic disease that having a primary doctor who understands it is essential. Every visit could be a new symptom. Every symptom could be a progression of the disease. This doctor disappeared.

Its moments like this that are so easy to abandon the journey and sit on the path. We were there too, but the one thing the doctor had left us with was his diagnosis. We couldn’t ignore it, and even though the doctor left, the diagnosis became our new horse, pulling us to more questions, but also finding answers along the way. Our new motivation was finding a specialist for Systemic Sclerosis.

The Other side of COVID

Covid 19 was a world changing event. Even today certain businesses require masks if you have any COVID related symptoms. It was a huge challenge for small business, for children’s socialization, for political unrest, and the list goes on and on. For our family COVID impacted us from multiple fronts, one of which we are now realizing the reality of its effects.

In 2020 I found myself working for Amazon as a delivery driver. My wife had worked hard to start a business a year and a half earlier and COVID set her back to square one. Through the grace of God we were able to get out of our lease and not run ourselves into debt with a store continuing to suffer with the waves of COVID rushing through. This did open up new opportunities. I was able to go to an aircraft dispatching school in St. George and become a licensed dispatcher. All that was left now was waiting for a dispatching job to appear.

As we waited strange circumstances regarding my wife’s health slowly reared their ugly heads. She had our youngest child at the beginning of the year so we had often assumed they were child bearing related, but as winter came on in 2020 things were getting worse. The issues were then given a new excuse, my wife testing positive for COVID 19. Around the same time, at the height of our stress, my wife’s fingers suddenly changed color. The first time I was at work. My wife texted me a picture of her hand and it looked like she’d dipped her fingers into some sort of dye. It was such a strange thing, we weren’t sure if we should be concerned so we hurried to the ER. They were equally perplexed.

When all was said and done, the prognosis? COVID 19, after all it was new and there was no way of knowing what it could or couldn’t be doing to her body. So we went home wondering what other horrible things this new flu could be doing to her.

Here’s where things took a turn. After getting a COVID diagnosis we were quarantined and I was out of work. When the two week quarantine recommendation was up, we called the office to ask how long we should expect to be quarantined so I could get back to work. They said my wife had never tested positive for COVID. That couldn’t be right though because we had received a call two weeks earlier with a positive test from the testing center and my wife had additional symptoms we attributed to COVID. Months later, after an array of additional issues arose, we finally took a COVID antibody test. It came back negative. Suddenly everything we thought was COVID related couldn’t have been because she’d never had COVID.

We would learn later her fingers changing color was called Raynaud’s and, although fairly common, her particular presentation is linked to other major diseases. So yes, because of COVID we lost a business and that sucked but worse than that, we started on a path of misdiagnosis with consequences that would follow us for the next three years.

So many words I wanna say

So many thoughts to fill the day

So many debts, ones left to pay

So many hopes, when comes what may

So here I hope my life won’t pay

For moments lost within my day

For questions had within the grey

I held the words I wanna say.

I’ve realized, especially in recent times, I have trouble expressing myself. I’ve always felt like I do it better through my writing than my words and that’s really what this little poem is about. So much that really wants to be expressed, but is suppressed by the stress.

Writing is definitely a way of letting all that go, but it’s a new challenge of making sure your words are accurately portrayed. I think that’s why I’ve always been drawn to the arts. Poems are held to such a strict structure you can’t overly explain. Paintings have no words at all and can attempt to express emotion with color. The real beauty behind it is that when you read the words or look at the colors you can fill your own life into the cracks.

I don’t consider myself anything special when it comes to my writing, but I’ve realized how much I use it to express the deepest emotions. I guess that explains why I struggle with a schedule of writing. You can’t schedule your emotions or what will truly inspire you, you can only wait for the wave and hope you catch it.