June 14th, 2021

Today I feel good and that I am beyond thankful for that. 

As much as I wish I could say I'm happy and pushing through, this week has been harder than most. It has been one of those weeks where I questioned “Is this really my life and how do I get through this?” as much as that aches my heart to admit.

I had a hearing test, and the results came back not what I had hoped. My ability to process words was at 50% on my left side, meaning no matter how loud the volume is turned up there are certain tones I simply don’t hear. This makes for a lot of “what(s)”, a lot of frustration and a whole lot of uncontrollable crying.

It’s like when you’re in a sport and doing everything the coach tells you to, making the adjustments, putting in the extra time, working 10X harder to be better and you still get defeated. It’s the loss that makes your stomach turn, scream in your car, break down when someone you love asks “are you okay?” It’s a big moment and a big loss.

My doctor went over the positives:

1. I can still communicate with people
2. My right ear has not decreased since my last test
3. I have pretty eyelashes (it’s the little things, right?) 
4. I have Meniere's disease (which is a negative) but this means it’s possible this could fluctuate and come back some

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This was the first time we talked about options for if I lose all or most of my hearing. We talked about cochlear implants and how technology has advanced so much. Talking about that was personally really hard for me. I can’t imagine not hearing at all. My heart shatters to think that one day it could be gone. Talking about cochlear implants made the reality all more real. Spooky.

There’s been a lot of tears the last few days and a lot of thinking how unfair this all is. I’ve spent most of the week in bed dizzy, at more doctor’s appointments, and ears ringing so loudly I can’t think. I’ve never liked watching movies and this week I even watched a few.

My Meniere's disease/Lyme disease has been flaring up. Focusing is hard and I lose my train of thought. I haven’t been able to exercise or go on walks because my body can’t handle it and I just about fall over from exhaustion. I got dizzy to the point where I fell off my chair. My bed became my home this week. 
I feel nauseous more of the day than not and break out in random sweats because of this feeling of uncomfortability. 

I’ve been saying “what” more often because my ears have been ringing with all the sounds I don’t want to hear. If you’ve ever watched A Star is Born, the sounds Bradley Cooper hears are similar to what I hear constantly- sometimes loud enough to drown out speech unless I really focus.

I’ve been praying harder than most times and asking for peace. 

This has brought me to more connections- I’ve had some eye-opening talks with people who have Lyme Disease and have been given some ideas for treatment. Bee stings may be in my future. Also, an immense amount of support from people who I’ve never even met reminding me there are ups and downs but life can still be so so good. From all of this, I am blessed. 

I’ve been shown so much support from my friends and family it’s unreal. I am blessed, because although at times I feel alone, I know I am still surrounded by so much love and that is what makes me able to see the good days that are coming.

This week there hasn’t been much hope and I've been in the loop of “this is never going to get better”.

I’ve been questioning why we have to go through hard things to make ourselves stronger because right now it just feels like a lot of unfairness. So, if you have a really good reason, shoot it my way.

I remember sitting outside a dorm room 2 years ago with my friend Connor. My vision blurred as I tried to hold back tears and my body itched as it swelled with anger because someone had hurt me. I was in pain, not the physical pain of my eardrum being popped to inject steroids or a needle surging into my spine or the ice-cold ozone that makes my veins boil. This was the other kind of pain when your body can take it but your mind simply can’t, sadness.

I remember saying, “I feel like my problems aren’t problems and people have bigger problems.”

“No daisy, your problems are real problems. You’re allowed to feel sad”

We do this all too often, we feel the pain- the instant suffering, but we don’t let ourselves accept and feel the sadness. The world often tells us we shouldn’t be sad about certain things, we should minimize our sadness, we should be strong, or we’re told we don’t have a right to be upset.

If I went back now that problem would be so small to me. I don’t get upset at other people really at all anymore, the instants that used to make me mad don’t anymore, I have a lot more grace. I’m sure I have a lot of small problems, but I don’t care about any of them. I just have one big one, my health. If I went back that problem wouldn’t matter, because if you feel healthy and you have people you love around you- that’s what matters.

However, if I could go back and tell that girl anything, I wouldn’t tell her that. 
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Instead, I'd tell her to listen to Connor, because he’s right. Your feelings are real no matter what you’re going through. I'd tell her when life gives you lemons you can throw them at the ground and be upset when you simply can’t find it in you to make the damn lemonade. 

I’d tell that girl she didn’t have to make the lemonade in that instant, but to allow herself to feel the sadness and grieve because days are going to come where you need to allow yourself to feel the sadness for a little bit before you can find it in you to make the lemonade.

I’d tell her to breathe and make the lemonade when she’s ready, not when the world tells her to be ready.

I’d tell her maybe the lemons need to ripen a little more so the lemonade tastes better.
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I’d tell her to have grace and be kind to herself.

Be kind to yourself, it matters. 
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All the love,

daisy