Overcomer

 

As we all know, it’s been a tough year for everyone, with COVID and all the things. My anxiety was pretty under control, until the last few weeks as I have noticed my patience and mood are quite different than they have been.

For one, we’re still in an ongoing pandemic — which again, is tough on literally EVERYONE. That, coupled with the upcoming one year anniversary of my diagnosis and a big appointment coming in just a few weeks, it’s no wonder my anxiety is rearing it’s ugly head.

 
 
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In positive news, I hit the max dose of my new medication, Uptravi. It’s been a tough ride titrating up (200mcg twice a day each week) to get to the max of 1600mcg. HOWEVER I made it and I’m feeling better than ever! It’s a long process to get to this point and results aren’t usually seen until 16 weeks AFTER starting. We’re about there but I’m already noticing the difference.

The hardest part with this medication has been the daily nausea and first-bite jaw pain. Thankfully the pain does go away but anytime I eat, no matter what it is, I get searing jaw pain that brings tears to my eyes. For some patients, this goes away, for others it’s just part of the drill. Regardless, I’m happy it’s working, because I’ve been able to do things that I wouldn’t have dreamed of doing a year ago.

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You know… things like beating my husband in Battle Beam — 4 out of 5 times. Or jumping on the trampolines with my kids. Or — even going up the stairs without feeling like I’ve ran a marathon. I’ve come a LONG way and while it’s been a challenge and it’s easy to get caught up in the day to day feelings, writing this brings a smile to my face and tears to my eyes. I really have done an INCREDIBLE job and am so thankful for my doctors and this medicine.

 
 

Breathe.

Another big goal of mine was to find a therapist I could connect with to help me figure out this emotional rollercoaster of chronic illness. For those who have searched for therapists, it’s hard to find one you connect with and one that you feel you can trust and be honest with — and even harder to find a chronic illness specific therapist.

I had a consultation with a lovely therapist who lives in town last week. We had our first session yesterday and — I think it’s going to be really, really great.

 
 

We started our session off by doing a body scan. It’s not something I’ve done in this way before but we focused on breathing deep, and starting from my head to my toes identifying anywhere that felt off or tight (even thoughts). We focused on those areas then focused on an area near there that felt good, giving gratitude and moving on.

One thing that she said that really hit home for me is giving gratitude to my heart and lungs. It’s hard to be grateful when you feel like a part of your body is working against you, but what she pointed out is that it is doing the very best it can for me. It is not against me, it is for me and again, it’s doing the best to provide for me and I’m doing my best to care for them. It’s funny when you hear someone else say something you say quite often to others (hi kids) — trying the best is all you can do!

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Another thing that we discussed was the feelings around my upcoming appointment. Again, we’re almost a year out and while I’m feeling better, I’m really nervous that my pulmonary pressures are still going to be completely out of whack. I think that’s what has really been feeding into my mood lately. She gave me another great tool to use for that — which I’ll share next time!

 

 

It’s easy to focus on the small things, the day-to-day, minute-to-minute but when we take a step back and look at the big picture, we can see just how far we’ve come. So friends, take that step back, take time to tune into yourself and feel all the feels.

—Chels

 
 
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Great-Grandma Dortha’s Butter Cookies