“Your blood pressure is too low for us to give you any pain meds, but we’ll numb the point of insertion. Just take deep breaths and relax. You are in really good hands.”

 It’s hard to believe that’s the scenario I was in exactly 2 years ago today – watching a team of doctors and nurses prepping me to have a large amount of fluid drained from around my heart that was causing excruciating pain, low blood pressure, low oxygen levels, and a racing pulse. Never in a million years did I imagine myself in this position —  anxiously watching a cardiologist insert a giant syringe into my chest. Every horrible worst case scenario raced through my mind while I looked on helplessly. It was really the first time in my life when I was truly scared of not making it out alive.

The two weeks leading up to this moment were a nightmare as well. Within a span of 14 days I found myself in three different ERs due to chest pain, only to be brushed off and sent home each time. It was a maddening period of time trying to get someone to take me seriously.

How many bottles of laxative did I drink just to appease the three different doctors who insisted I was just constipated? How many sleepless nights did I endure with excruciating chest pain and a heart that was threatening to pound out of my chest? And I can’t forget the head games I tortured myself with.

You know — the ones that consist of never ending debates such as:

It’s only acid reflux.

Ok , but why can’t I breathe?

You’re just making yourself crazy!

My heart feels like it’s going to explode.

Well, the doctor said you’re fine.

Yeah but how many people die suddenly in their sleep?

Something is terribly wrong.

Yeah but you can’t go back to the doctor.

They’ll just think you’re crazy again.

Conversations like these would continue well into the early morning hours.

Tired of getting the runaround, my husband (by being very direct and refusing to take no for an answer) miraculously got an appointment with a cardiologist for me. We finally made some headway. A week later, when my symptoms peaked, forcing me back to yet another ER, the doctor actually took me seriously because I was able to tell him that a cardiologist diagnosed me with pericarditis. I guess that made me legit. Unfortunately, now it had progressed to a dangerous level of fluid buildup which they had to drain surgically.

It’s hard to believe that was two years ago. It’s definitely an incident I’d like to say was the climax or turning point to my pericarditis story, and that ever since I’ve had a wonderfully neat and happy resolution leaving it all in the rearview mirror.

Of course, that’s not what happened, but sitting here reflecting two years later, I can at least say this:

I’m much more educated about the healthcare system, medication, and health in general.

I know and understand my body and its inner workings better than I ever have.

I am wiser.

I’ve learned to be more patient, and to trust God more.

I’ve learned to let go of things that I can’t control. 

I’ve realized what truly matters to me and I appreciate them in a whole new light. Things like: my family and our mission, the power of gratitude and prayer, and how strong and resilient my body and mind are.

My Family

It’s difficult to describe how I see things differently now. Everything is more colorful and vibrant and the things that used to fill me with fear don’t typically bother me anymore. I suppose that’s what lying on an operating table surrounded by doctors while watching a giant syringe being inserted into my chest will do – I suddenly realized how precious and short life is, and all the silly things that used to ruminate in my mind no longer mattered.

So while I’m extremely grateful for the shift in perspective, it certainly hasn’t been easy. My frustrations with doctors and our medical system and insurance company continue. My insurance just recently denied a scan ordered by my cardiologist in order to rule out any blockages I may have that could be causing my shortness of breath while running. He thinks it’s highly unlikely I have any, but it would be the final test for my heart health and it would ease my mind. My insurance denied my doctor’s appeal and said I didn’t need it. Of course they did! (Don’t even get me started on how I feel about that!)

My rheumatologist recently canceled my follow up which pushed my blood work back another two months because it’s nearly impossible to get an appointment unless you book months in advance. At this point, I don’t even want to go back to him because of the way he blew me off, but I am so sick of looking for doctors.

On the bright side, all of this frustration is what motivated Paul and I to search for our own answers and to start eating extremely healthy. It’s been several weeks and I’m proud to say we’re still going strong and very hopeful. I’ve been running consistently, which of course makes me happy. Meanwhile my pace has gotten almost a minute faster per mile which I’m thrilled about! What used to require a ton of effort, and left me feeling terrible and frustrated, suddenly feels much easier and enjoyable. My breathing has improved, and I’m able to pick up the pace from time to time without feeling like I’m going to drop dead. Maybe the strength training is finally paying off? Whatever it is — nutrition,weights, consistency — I’m really encouraged.

I’m not naïve, however. I’m sure there will be ups and downs, but what’s different this time around is I’m not fearful of what’s to come. Knowing that I’m doing everything in my power to keep lupus in check and that everything I’ve gone through can be used for something good is all the reassurance I need.

A huge, heartfelt thank you to everyone who has offered encouragement and support over the past two years. My prayers go out to all of you who are dealing with similar issues. So many of you have reached out and shared what you’re going through and I’m so grateful for that. It’s been a tremendous help to know I am not alone and there are others who get it. Thank you for validating my frustration! Please keep sharing your stories! There’s tremendous strength in community and that’s what I’m hoping to build!