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I think this might be the first time that I actually have a lot of things that I have planned to change in the upcoming new year. Most would call them new year resolutions but I don’t. Living with Pompe disease I feel like there’s always something to change or a goal to achieve.

When referring to health your body will tell you what you need and sometimes how fast you need it. Even though I prioritize my health I want to include my outer appearance as well. That means taking better care of my skin and hair and nails because all of that is connected to our overall health. How you look can tell you how your health is. Pompe looks different to everyone. But I want to feel and look as healthy as I can. 

This year has been a rollercoaster ride, not just with my health but overall. With moving and gaining a great deal of independence,  I love the changes that are coming and I want to go through things with more caution and understanding. As much as I hate doctor appointments, I want to stay as updated as I can.


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Right now, I’m behind on my blood work and I know it’s important that I check my vitamin D because I’ve always struggled with vitamin D deficiency and low iron. But it’s not that I purposely ignore appointments, it’s just I’ve been dealing with some transportation issues. Not to mention my power wheelchair has been having issues as well. Thankfully, I’m eligible for a new wheelchair next year.

Anyone that uses a power chair knows when something goes wrong with it, the wait of getting it fixed is a process that includes waiting months and that is unfortunate because your entire schedule is ruined. It is definitely a stressful situation when our important medical equipment is not working for us but it’s really important not to stress about it because that’s another thing I have to learn how to control.

I suffer from headaches when I am stressed, and I lose my appetite. It literally makes me sick when I worry. As hard as it is not to worry I have to put my health first as well as my faith and let things play out. Most of the time things work out for me when I put in the work. I lost my transportation a couple of months ago and was worried about missing my important doctor appointments. But instead of stressing about it, I decided to take public transportation, which meant taking the risk of finding space for my wheelchair after waiting at the bus stop during winter.

I did it and it wasn’t as terrible as I thought it would be. I did feel like I was putting myself at high risk of getting sick because I was very around people who were coughing near me. I made it to my appointments and thankfully my application to get my personal transportation back had been approved and I can go pick up my ID card for it. That was a definite stressful situation for me but I decided not to let it stress me out. I’m proud of myself for that. 

I want others with medical conditions to know that there is always room for some kind of improvement whether it’s health-related or not. Especially mentally. Feed your mind and learn new things about yourself.