mauritaspeech

Heart Month

As I’m sure you are aware of by now, February is American Heart Month, which goes along perfectly with Valentine’s Day 💕 Since red is my least favorite color (with the exception of crimson – Go Cougs!), I probably won’t be sporting any awareness gear. However, I will still be saying my spiel for my yearly awareness post 😊 If you are my friend or have known me in the last 6 years, you are probably aware that I have a progressive disease that affects the heart and lungs. In 2020, I was diagnosed with Takayasu’s Arteritis (my immune system essentially started attacking my aorta and pulmonary arteries), which caused Pulmonary Arterial Hypertension, which in turn caused congestive heart failure and blood clots in my lungs. Mine was and still is a complex case that requires a lot of medication and a lot of appointments to manage. However, bodies are resilient and hearts are amazing organs and have the capability to heal (with God’s grace and very expensive medications). The severe heart failure that I was diagnosed with in August of 2020 has since corrected and is now classified as mild.

I am incredibly fortunate that I have responded so well to my medications and treatments. I have an amazing medical team at the University of Washington, as well as locally in Spokane, and am blessed for their support and care. It is inevitable that the disease will start progressing again at some point, but with new innovations and treatments on the horizon I continue to have hope. I have gotten very good at finding silver linings and have been able to do more advocacy work for PAH, TAK, and rare diseases. For whatever reason, this happened to me for a reason and I have tried to find my purpose. I actually have my first published advocacy profile article coming out next month! We need more awareness for these diseases (early detection can save your life), as well as funding for continued innovations in research, and most importantly a CURE! My life depends on this, as well as our entire PAH community.

If you are able, please consider donating to the Pulmonary Hypertension Association. I have been working with the PHA for advocacy work and they are a phenomenal organization that supports research, as well as patients that need extra help and support. Lastly, if you notice any signs of heart issues, please contact your doctor ASAP. Signs and symptoms may include chest pain, tightness, shortness of breath, fatigue, dizziness, and swelling in the legs or stomach.

https://phassociation.org/get-involved/ways-to-give

What am I doing?

I often wonder why this happened… Life was flowing along as it should in your mid-30’s. You are busy. So busy that you honestly don’t even realize how quickly one day flows to the next. You see it in the repeat loads of laundry, how quickly groceries disappear, the constant scheduling, scurrying from one place to another. Just trying to take it all in. Trying to remember your babies special days at school, firsts, lasts, and the in-betweens.

That’s where the cracks start to show. Small at first. So small you hardly notice. A little out of breath with going up the stairs… So maybe you gained a few pounds and should exercise more. Some pain in your side… You did bump it yesterday. Confusion… You have a lot on your plate. It’s easy to excuse these things. Look past them. Look to tomorrow when maybe, just maybe, things will be better. You can breath and the pain will be gone. But tomorrow isn’t like that. These cracks become a ravine and then you have to seek the answers. The hard ones that you don’t want to hear.

Then there’s the doctors that dismiss you. They tell you that you have anxiety or it’s “just part of getting older”. But you’re only 35! You should be able to walk up your stairs with a laundry basket, right? Or is this truly a curse of 35 year old’s that suddenly you age 30 years overnight? You have never been 35 before, so maybe they are right…

How the answer came will come in a different post, on a different day. Today I have something more abstract to share. Not the black and white of the medical reports and scans. You see, I think I might know why this happened. I am hear to share it all because there has to be a purpose in this. I always say that I am forever seeking the silver linings. It only recently occurred to me that maybe the reason that I am still seeking the silver linings, when every medical journal or website says that I probably shouldn’t be, is because there is a purpose in seeking and sharing them with you.

So here it goes, my friends. Let’s unpack these bags together. Let’s share how trauma, cortisol, stress, too much sugar, and a lack of coping can combine to create a terrible storm in the body. Let’s share how it can tear us apart from the inside out and only we can persevere to put ourselves back together ❤️

Hello World!

I decided to start this blog after talking with a friend at my son’s basketball game. We both struggle with autoimmune conditions and got on the topic of the infamous prednisone. Next thing you know, we were laughing at how even our knees gained a temporary layer of fat, our heads were permanently larger (beanie stretching in the winter became a thing – if you know, you know) and we now require extra wide shoes and sometimes even a size larger than our pre-steroid feet required. We know what mood swings and pure rage over seemingly nothing feels like… We’ve had night sweats, digestion issues, and our hair thinned… We get DEXA scans now with our mammograms.

But with all of the yucky stuff, it also saved our lives…

I’m starting this blog in hopes that we can create a shared community space to share our battles, victories, hard stuff and the downright horrible stuff. Because chronic illness it tough, but my friends, so are we!