More about why I’m angry about our health and what I’m doing about it

This is part 2 of the April 4 post about informed decision making throughout healthcare processes – today, this is more about how I navigated the health system myself, through various health issues. I put the lens on myself so I could demonstrate how a lack of guidance led to a lot of trouble. It was the system at the time, though – no medical provider here has particular fault. I play a part myself, largely because I didn’t know any better.

I had an eye-opening discussion about adhesions with an amazing Australian physiotherapist last Saturday. Here I was, thinking I totally understood my own mastectomy scars, and that I had managed to stretch my chest muscles pretty well, even if my surgery was 14 years ago – WRONG. In less than 10 minutes, this wizard physiotherapist found two adhesions that I didn’t even know about. And it summoned up the frustration anew, that the continuum of treatment abruptly ends once you’re not being actively…well, treated, and at that point, you’re on your own. And now you have to figure it out – without a medical degree or a sophisticated understanding of what’s even going on inside you.

We need to do better for ourselves – and if we work with people – with our clients, but how? As trainers, even with specializations, our powers are limited. My way is to embrace the team concept – a deeply collaborative network of cross-referral to address client issues, each provider from their area of expertise, and form a network of support. If you have a nutritionist, registered dietitian, oncologist, orthopedic surgeon, physical therapist that’s been your rock in times of physical trouble, please refer them to me! I love meeting good people.

As for us as individuals, I think the best way to get in front of this is to embrace the preventative, even when we’re forced to deal with the current state of breakdown we might be in. Because even this is temporary. May not feel like it, but it is.
Yes, I’m saying this as someone who did not take her own poor health too seriously until – ironically – about 10 months before diagnosis.
Yes, even as someone who has cancer in the past.
Why? Because the future me deserves better resilience and preparedness, and no, it’s not going to be perfect, and it may not even be adequate for whatever lies ahead. But it’s SO MUCH better than doing nothing. I know a lot about doing nothing & less than nothing, and let me tell you – it wasn’t worth it. Get ready:

In my 20s, I developed both full-blown IBS and an autoimmune kidney disease and got little to no help with either, because I had no insurance at the time & had to ration care – I was living that romantic “starving artist” life and had no-benefits jobs. I got help with the kidney disease at a local teaching hospital. Otherwise, the advice I got from doctors was neutral to unhelpful, and I was mostly on my own. About the IBS, I got a lot of, “there’s nothing wrong with you”, and it turned out to not even be correct. This is a terribly demotivating thing for a doctor to tell a patient, and I think we’d all be a lot better off if they said “I don’t know what’s wrong, but I’m going to try and get you answers, because something is clearly wrong.” At least, that gives us hope as patients that there IS a solution. Living in uncertainty is a stressor, and is preventable in some circumstances.

Admittedly, I was also terrible at maintaining a normal diet. I smoked too much, ate too little, and drank too much coffee and diet soda. I think I lived on bagels and the occasional chocolate chip cookie – they were my crutch and my primary source of energy. So naturally, I crashed hard and had a body that felt terrible and I got sick all the time. And then it got worse.
I started to get very lightheaded from any exertion – so I did less, and practically became confined to home, because I was always collapsing, and nobody could figure out why.

I’m going to skip a lot of details and just give you the broad strokes of what happened next:

  • I had to start eating much better – I went to a nutritionist.
  • I had to start walking as exercise – at first, all I could manage was down my street & back.
    In my early 20s, I had no social life, no job, no fun – I just got up every day and tried to get out of the house & down the street.
  • I had to start working on my sleep, which was too little as well.

This worked well enough that I was able to go back to a normal life – I went back to college, and was doing great. However, I still had IBS & the kidney disease. I wasn’t physically resilient. Finally, I got an inner ear infection that turned into vestibular labyrinthitis (vertigo) and had to go on medical leave from school and caused symptoms for the next decade.

  • Month 1-2, could only listen to the radio & stare at the ceiling.
  • Month 3-6, had to relearn to move my eyes, read, or watch TV without experiencing extreme nausea.
  • First 6 months: had to retrain my brain to handle being in a car for longer than 5 minutes.
  • First year: could finally ride in a train again – I carried motion sickness pills around for the next 10 years.
  • Also first year: retrained myself to walk without crashing into anything to the right of me.
  • I had to relearn stairs, elevators, escalators, jumping, running, etc.
  • I quit smoking for the first time.

That was a slow but successful process and then…
I developed two very large LCIS lesions in my left breast about 3 years later (ago 29), which were excised.
At 38, the bottom dropped out completely & I got breast cancer in my right breast and thyroid cancer/Hashimoto’s disease. I was a fragile wreck, because I still hadn’t learned anything about what was ok. I thought it was fine to drag myself through life, barely functioning, because bringing home a paycheck was proof that I was winning at life, no matter how shitty I felt. I constantly worked to function within the health benefits system, no matter how much I hated the job I was at. Paradoxically, that coincided with my health getting worse and worse.

A LOT of that was preventable in a number of ways. A lot could have been much less stressful on my body. I had absolutely no idea how to do any of that. I do now. And it’s why I became a specialist personal trainer.

I want to help anyone I work with develop the tools to build true resilience in their own bodies, to have a better understanding of what is and isn’t within their control (when maybe a little problem can’t be dealt with by exercise). And I want my clients to understand and trust that if I refer you back to your doctor or suggest you ask your doctor for a referral, it’s because it’s the best thing for you at this moment. It doesn’t mean we can’t work together, at this moment, it means we need medical guidance about the right way to proceed for you. My clients are in my heart and that’s never going to change. So I’m going to treat each and every one of you the same way I treat my family or myself – work when work is the right thing, rest when rest is the right thing, and get help when help is the right thing. That’s what differentiates cancer exercise specialists even from other types of corrective exercise specialists – cancer is an expression of a systems problem; we’re not going to just jump in and start doing tons of abs or lunges, because abs & lunges are only the right thing to do when they’re actually the right thing to do. You can’t outrun your diet, and you can’t bullshit your body. And if that puzzles or intimidates you, call me. I’ve been in that place and I know how to get out.