Let me crawl under a rock...

Do you ever feel that way? Especially after a visit to your doctor, or a specialist? You make it a point to be on point with your appointments, with your medication, with your diet and water intake, even with your exercise, and yet a few words from your doc renders you helpless like a newly born kitten. Trembling, eyes a smidgen-wide open, heart racing, and trying to find mom to hide under. Why do the words of a doctor have so much effect on us?

Well, I suppose if you've been exposed to a world ransacked with medical appointments, hospital visits, conversations with doctors and specialists, your go-to reaction is: "oh shit, here we go again".

I recently got a call from my family doctor's locum (subbing for my family doctor).

"Hi Antonietta, how are you doing? I'm just calling to book you an appointment with your ophthalmologist. I see that the last time you went was last year and I read the ophthalmologist's report. She says you have bilateral retinal cataracts and suspects possible glaucoma?"

She reads this out to me as a question as though I needed to confirm these findings.

"Um, I've never been told I have cataracts and possible glaucoma".

"Oh. Let me see here"

She reads the report again. I'm wondering if she's reading someone else's report. Is she sure she has the right patient folder in front of her?

"Yes. Patient has bilateral retinal cataracts and glaucoma is suspected. Did she not go over this during your visit last year?"

"She did not mention either cataracts or glaucoma. I would have remembered."

"Hmm okay. Any changes to your vision since your last appointment?"

"No, not really. Except for the dryness in my eyes."

"Okay. How about we book your next appointment this month and you can discuss this with her when you visit?"

"Okay."

My stomach is churning. My mouth goes dry. I find myself pacing in the store that I have entered like a mad woman. I'm supposed to be shopping for ski boots for my partner's upcoming birthday. Instead, I've transported myself what seems like a tunnel, and I can only walk back and forth. Perhaps I am looking for a rock to crawl under, but there isn't any in sight.

"Does this mean I will go blind before the age of fifty? Will I need one of those sticks to get around? What does this mean?” These thoughts are racing in my brain as fast as people rushing in stores on Black Friday. It feels like total chaos.

"Okay, take a deep breath. We don't know all of the evidence and facts. Just breathe."

These two words have saved me time and time again. They have transported me back to the present. Back in the ski shop. I allow myself to take three deep breaths and gather myself.

When you have lived with a chronic illness all or most of your life, the world seems like a minefield. You're careful with every step because you never know the next time it may.....BOOM! Fall apart. You are in hyper vigilant mode all of the time.

I've stepped on quite a few medical mine traps like these in my lifetime.

They leave you spinning and wanting to crawl under a rock. You want to hide from the news, the thoughts, the pain.

One thing that most people do not understand about those who live with a chronic illness is what I like to call the Iceberg Effect. To a person on the outside, I can be seen as a person that has to deal with getting blood transfusions every three weeks to stay alive. But that’s not the whole picture. That is just the tip of the iceberg. What you see, (or know) on the outside. They don’t see what’s under water; the bottom side of the iceberg. They don’t see the amount of work and effort in maintaining my health and ensuring that my bones don’t give out from osteoporosis, that my veins don’t scar over, that my liver does not develop fibrosis, that my heart does not become enlarged, that I don’t develop Diabetes. No, they don’t see the bottom side of that iceberg.

I love working out with weights. Weights are what saved my bones and increased my bone density. But I have days where I just don’t want to step into the gym. I can’t afford to say, “Forget about it. Go lay on the couch and call it a Netflix day”. I can’t afford to do that because I need my bones to be healthy.

I can’t drink alcohol as much as I want to because then my liver may be compromised. I need my liver to detoxify all the crapload of medications I ingest.

I have to keep on top with my water intake because that means being poked once or being poked seven times when I go for transfusions. Water keeps my veins healthy and visible to the nurse who is starting up my IV.

I need to be on top of my cardio because my heart needs to be in shape in order to manage and circulate all that blood I receive every three weeks.

I need to be on top of every appointment; my hearing, my eyes, my heart, my liver, my bones, my hormones. You name it. I need to because it’s what makes the difference between striving to live or thriving and living a happy life. But it takes work.

This is a small picture of the bottom side of the iceberg. The list of to-do's when it comes to managing a chronic illness is long. This is what takes a lot of mental, emotional, and physical energy.

For most people who do not live with a chronic illness, they don’t see this whole picture. It seems like it’s just one thing we have to handle or endure but it’s much more than that. The hyper vigilance is real and so when medical news is thrown our way, it’s understandable that our reaction can be to hide from or avoid it.

I may crawl under a rock when something like this happens, but I’ve learned not to stay there too long. I give myself permission to go through all of the emotions, even the ugly ones. That's the difference between striving and thriving. I cry, I get angry, I get cynical, I get frustrated, I feel hopeless, I feel like giving up. Then I take a few deep breaths and think about how far I’ve come. I remind myself that I have been through quite a bit, and that I am strong beyond measure. I remind myself that I have always learned to adapt, to refocus, and to regain my strength because this too shall pass. Better days are always on the horizon. And if those sucky days filled with not-so-great medical news come again, then I will deal with them when they come. Onward and upward. I choose to live beyond my condition because I know I deserve the best life I can create for myself. This life does not come easy. But it comes with rewards, great values, and sheer strength of the soul.