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Things I wish I knew earlier about life and Arthrogryposis

As I get closer to my 40's I finally am fully implementing these in my life and seeing such amazing changes, and I keep thinking how useful these would have been all along my life.


For I while now, I have been noticing the impact that food has on my body, and even if have been making changes for a while, it has only been in the last year since I made the choice to fully embrace the fact that what I choose to put in my body creates health or decease, and since then I have noticed MASSIVE improvements not only in my pain but also in my energy levels, mood, and stamina. Before this, I lived in a constant inflammation state that only caused my AMC to feel very daunting. So, even though I like eating junk food as much as the next person, and I loved bread and lots of highly processed foods, I love more how I feel now while discovering healthier options that are as yummy but also help me feel better. That's why I'm becoming such an advocate for what nutrition can do for our disabled bodies.

Rest: When we live in a society that glorifies the hustle is very easy to fall into the trap of one must be in constant movement to achieve... to win in life. But in the last few years, I have also realized how vital rest is for my body and how much more I actually can achieve by giving myself permission to rest a recover. Nobody told me while growing up why I was tired after not doing much... well the thing is that it wasn't much for the next person but for example, the simple act of getting dressed in the morning was taking me 50% more energy - if not more - than my peers. Now I know that simple daily tasks are way more energy-demanding for me and that's why I need more rest and more hours of sleep, and that's why, again, I make a remark on food, we need more nutrient-dense foods that provide energy rather than the empty calories of highly processed foods.

Mobility Aids: Following on the last point about how we spend more energy doing daily life things, mobility aids help us save that precious energy.

I love the example of an AMC kid using a wheelchair to get to the park so that they can enjoy the playground. If we walk to the park is very possible that we won't have the energy to enjoy the main fun activity which is playing with our peers. That example my friends works in every area of our lives.

And last but not least...

- Financial Ed and planning: this like the others is important for everyone but in all honesty, it makes a huge difference for someone with a body that needs more attention/care/help.

There are many things that are luxuries for others but our cases are needs, for example: someone who helps us deep clean our homes, or pedicure/podiatrist visits, new shoes more often because of our gait making them deformed and less supportive quicker, etc. All these needs add up quickly and they are truly important for our quality of life. So, learning how to budget and save for these and many other needs is so NECESSARY.

I hope these make their way to those growing up with AMC, maybe it can help some prepare better for adulthood than I did and don't need to learn it by life hitting them in the face...

💙 love,


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