Health Post 2: Waiting for a diagnosis

The waiting and not knowing just might be more cruel than the actual sickness

Nov 30, 2021

The last two months have been absolutely crazy. Life altering stuff if you ask me.

When summer of 2021 flipped my life upside down I thought that would be the biggest thing I would experience in my life, if not, for a while. Boy was I wrong. When a tragic day hit our family in June and tragedy after tragedy struck within days of each other— I couldn’t shake a voice I kept hearing.

Brace yourself.

Huh? I have gone through two years of REALLY HARD STUFF + hit with tragedy + during a pandemic + while I have been ill and the voice I hear is…

Brace yourself?!

That was it. I didn’t know what. I didn’t know when. I just knew that it wasn’t done. Whatever this was, It wasn’t finished with me. Though I begged and pleaded and longed for this cup to be taken from me, I knew it was mine to carry.

I didn’t tell anybody I felt this. It was weird. Even to me. So I ran away. I took an overnight where I welcomed the silence, let the tears flow and for the very first time in my life— I was alone.

I slept, I read, I cried, I showered, I napped, I did it all again, but nothing could take away the nagging voice I kept hearing.

Brace yourself.

I’m not finished yet.

I felt like a puppet. Utterly left to the workings of a puppeteer. No matter how hard I fought, cried, screamed, sobbed, and begged for grief and suffering to be taken away from me I was a puppet left at the mercy of someone else and all my fighting back was fruitless, useless. I was wasting my energy. I was fighting against the tide even though I had no control. That’s when I decided to just say OKAY and go with it.

Fine. Okay. I’ll brace myself but what for exactly?

If the month of October had a name it would be searching.

I scoured the internet for answers to my symptoms. I read medical journals, found blogs from the chronically ill, and dove. right. in. I paid attention to all my symptoms and made note of anything I noticed unusual, no matter how small it seemed. It was exhausting. Draining. Excruciating. Gut wrenching. Journal after journal after journal, symptom after symptom after symptom and instead of answers all I had was that nagging voice I heard in my head: Brace yourself

At that point, I was undone. I have been sick and vomiting since May of 2020. I have been on the bathroom floor, over the toilet, sobbing more times than I can count, begging for it to stop, at all hours of the day. Whatever I ate always disagreed with me. ALWAYS. My nausea and vomiting that I had grown so accustomed to after enduring it for 18+ months of my life was really taking a toll on me.

I wondered if it would ever stop.

If I can’t eat. If I can’t keep food down, if I can’t keep water down… what can I do? I was really starting to freak.

I have both been at the heaviest weight of my life (I was pregnant and gave birth in Jan) and at the lowest weight of my life (now from not being able to eat) and it is truly humbling to know that I absolutely DO NOT CARE HOW MUCH I WEIGH now as long as I have my health. Let me say that again, health is everything. Without my health, I couldn’t do a single thing. For a type A, over achieving, first born daughter of immigrant parents, stay at home mom type of gal, I don’t take it lightly when I say I had to depend on my husband for things I could normally do on my own and it was utterly humbling and I was so grateful for him. But the question still remained:

What was going on? How can I fix it?

I racked my brain. I scoured the internet. I prayed.

I asked myself, who do I know that has been this sick and what do they have? Is that what I have? I was in a weird place where the doctors didn’t see that I was sick and at the same time I really wasn’t doing well.

My dear friend Alyssa wrote the book Made for Brave and to say it changed my life is an understatement. It SAVED my life is more like it. It was the first person who showed me a glimpse into diagnosis and living with chronic illness and grief. It was a hard read. It was raw, beautiful, courageous and gave me the bravery to keep going. Keep asking. Keep searching.

At the same time this was all happening to me, a blogger I’ve followed since 2013, Danielle Walker, came out with her memoir, Food Saved Me, and I was privileged enough to be in her book launch group. Her autobiography gave me a deeper insight into her 10 year journey of diagnosis, food, flare- ups, motherhood through it all. It gave me hope and courage to dig deep and advocate for myself.

Okay, I think to myself. Alyssa manages her disease with food, Danielle manages her disease with food… but you don’t have what they have. If I can just figure out what’s wrong with me, then I can manage it with food, too.

Think Alex, think. Who can help you right now?

And it's as if someone up there Himself orchestrated history in a way that someone I knew almost 7.5 years ago would end up being the key unlocking all of this.

YES! I whispered to myself as I recall the last time I texted her. It wouldn’t be *too* weird to text her out of the blue right? I grabbed my phone and found her name. We hadn’t chatted for years besides a couple texts last summer, here I go.

type type type type type type. tell her all my symptoms. send.

We exchange a couple more back and forth and finally… “HOLY crap you ARE me! We should Zoom, are you around?”

It brought me to tears.

I felt so seen.

After feeling so unwell, seeing different doctors, and having my tests come back “clean” and “normal” while I was feeling utterly horrible and my body was attacking me from the inside, I was really starting to doubt my own symptoms.

If I wasn’t writing it down in my journal, living it every second, and having my sweet family pay witness to how horrible I felt, I would have started to believe all the lies that the all the doctors and everyone around me kept telling me: you’re fine, you’re healthy, there’s nothing wrong…

There was absolutely something wrong.

And now someone else who has been there before, believes me too.

I was sick. I was weak. I was tired. I was fatigued. I was frail. My voice was hoarse. I rested a lot. All those are still true, but now I also felt empowered.

My friend, she was sick like me, sicker than me, and she is now doing better! Alyssa is doing better. Danielle is doing better. Kristen Boehmer? (look her up shes amazing) Also doing better. With these women before me advocating for their health and coming out strong on the other side, I also felt stronger.

It’s my hope that you read this feeling hopeful and a little closer to feeling stronger too.

XO,

MWAP

That Mama With A Purpose

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