Health Update

My physical health has been up and down these last few weeks. I have my good days where I can get work done and enjoy life, but I also have my really bad days where I can’t get out of bed without feeling faint and dizzy. My mental health, on the other hand, has been consistently rough. My anxiety has gotten severe and even though I didn’t realize it at first, so has my depression. This is heavily due to the fact my future has been on my mind a lot lately, especially one certain aspect of my future; having kids. For as long as I can remember, I dreamed about becoming a mother. Tom and I had always discussed having children in our early twenties, shortly after getting married. But being diagnosed with Lupus has turned our entire plan upside down.

The reality is that having Lupus does increase my chances of miscarriage, birth complications and even infertility all together. Yes, I know there are many women out there with Lupus who have children and had problem-free pregnancies but there are also many who have not. Just knowing that we could have problems getting/staying pregnant and there is a chance we may never become pregnant at all is a thought that honestly breaks my heart. Before this diagnosis, we had a plan. Shortly after our 1 year anniversary, we would begin to actively try for a baby as long as we felt we were in a financially good space to do so. But now, that can’t happen. I need my health to be in check before we even consider trying. But we are also still on a timeline because the older I get and the longer I’m on my medication, the harder pregnancy will be for me and the risk factor goes higher. It is so hard to hear friends and family ask me, “so when will you guys have a baby?” knowing that I don’t know that answer anymore. It hurts having to explain why we need to wait and even explaining how it may never happen biologically for us. I always feared infertility issues, always scared that my biggest dream wouldn’t be able to come true for me. I wish I could get testing done now, to know before we start to try and have to experience heartbreak over and over again if it turns out that I can’t become pregnant or hold a pregnancy. But doctors won’t run those tests unless it’s necessary.

I thought by 24, I would be pregnant with my first child or already have a child. I never thought by 24 I would be diagnosed with Lupus, uncertain if I ever would be able to become a mom. I’m trying my hardest to turn this diagnosis into something positive, to use my experiences to help others. But some days, it’s just so hard to look on the bright side. I feel like I’m grieving, I’m grieving the life I had and the life I thought I would have. The life that was robbed from me by this illness I never asked for. I still have big dreams, dreams that I want so badly to come true but I always fear that my mental and physical health will keep me from ever achieving them. I feel constantly trapped, having to rely on everyone for everything because I can’t do things myself anymore. I can’t drive, I can’t work, hell, some days I can’t even make it up the stairs without help! When I go out, I constantly have to monitor how I’m feeling, often going through periods of lightheadedness and just an overall underlying panic of something going wrong. I won’t even go anywhere if Tom, my mother or my grandmother are not with me because at least I know they understand and they know what to do if god forbid, I get really sick out of nowhere. It sucks having to live like that.

People keep telling me that “it could be worse” and that “I’m going to be okay” and though I know they are right, some days I don’t want to hear it! Because the truth is, yea, it could be worse but this freaking sucks too! And I have every right to be angry and sad about having my independence ripped away! Than on the other hand, I have people compare my illness to others with the same and that hurts worse because everyone deals with illnesses differently and everyone experiences different symptoms. Just because one person is able to work and drive with Lupus, doesn’t mean that I can. I’m trying my hardest but I also can’t risk my life and my health getting worse. I’m at my breaking point as is and basically being told I’m not trying my hardest, that I’m being lazy and using my Lupus and anxiety as an excuse, it’s just beyond heart wrenching and makes me want to cry. Because I am trying my hardest, I’m pushing myself as much as I can.

I’m not happy with my life but I refuse to just give up. I guess I just need to continue taking everything one day at a time, hold onto faith, and no matter what, stay strong. That’s the only way I’ll get through this challenging time. Friends and family tell me how strong I am and how well I have handled this. But the truth is, what other choice did I have? I either let this break me or grow from it. And even on days like today, where I’m deep in my head and am feeling so discouraged, I know I won’t let this shatter me. 

Until next time,

Kaylee D. ❤

A part of me

Why can’t I just be normal, oh why can’t I just be sane

I’m sick of these thoughts, these worries constantly in my brain

All they do is make life harder for everyone, especially myself

And no matter how hard I try, I just can’t seem to get help

The anxiety is so strong it takes over my life

The depression so overwhelming I want to grab a knife

I want to stop the constant pain I feel inside

I want to curl up into a ball and find some place to hide

A place no one will ever find me

A place where I can’t hurt the ones I love you see

Oh why can’t these feelings just disappear

I’m sick of the worrying,the sadness and fear

I just want to be happy, is that so hard to ask

I never imagined being joyful would be such a hard task

For it seems everyday tears fall from my eyes

And on some days, I just want to die

Believing only in death will I finally be free

And that everyone would be much better off without me

I know these thoughts are awful and untrue

But some days the pain is too strong, i’m just too blue

Too blinded by the pain to see the beauty in my life

Too stuck in the darkness to see even a glimmer of light

Oh how I long to be normal, how I long to be free

But deep down I know, a normal life will never be for me

I’ll never be free from the demons within my mind

Even if they leave I know they will return time after time

Because I know in my heart, though it’s heartbreaking to see

Anxiety and Depression will always be a part of me

Monster

I’m crying and falling a part

While you just sit there and stare at me

When did I become the enemy?

When did I become the person you don’t want to see?

What happened to loving me? Protecting me? Saving me?

Am I too broken for your sympathy?

What happened to your empathy?

I thought you were the one sent to me

To rescue me from this tragedy

Instead it seems like you’re the one burying me

Leaving me a victim to the voices in my head

The voices that tell me i’m better off dead

The ones that say everyone would be happier if I was gone

I’m starting to believe their song

For the way you look at me now, it seems they were right all along

So why am I still trying to survive?

Why am I still trying to thrive in a world that wishes me to die?

When I know deep inside, I will never be anything you need

Just another useless mouth to feed

Just another bitch you don’t want to see

Everyday I’m losing more and more of me

More and more of the person I used to be

As the pain takes over and drowns me

And leaves me in a puddle of my own tears, my own blood

Left on the side of the road in a ditch covered in mud

Begging for the sweet escape of death

Giving up on the thought of anyone rescuing me

From the monster that keeps consuming me

From the anger that keeps rising endlessly

Inside of me, causing me to want to hurt anyone I see

Screaming out in agony

At these sudden violent tendencies, stay away from me

I will hurt you, can’t you see, there is no controlling me

Don’t fucking walk away from me

No one can save me from the monster, no matter how hard they may try

No one can save me from this thing that wants me to die

From the being that strangles and tortures me day and night

The anger continues to build up inside

Making it harder and harder to breathe, harder and harder to survive

I don’t want to be alive

As the anger rises it becomes clearer and clearer for me to see

The monster to blame is

Me

I Don’t want to go

I don’t want to go

 

I don’t want to go to concerts

I don’t want to fly

I don’t want to go black friday shopping

Please, don’t make me explain why

I don’t want to go out to the club

Or even drive a car

I don’t want to go on amusement park rides

Or travel very far

Don’t ask me to go to a broadway show

New york City is a place I just don’t want to go

And though I love movies, I’ll wait so I can watch them at home

For I don’t want to go where movies are first shown

Lately, it seems, i’m afraid of everything

I don’t want to do anything anymore

I wish I could just stay in my house

Just me and the ones I love safe behind a locked door

If someone gets sick or injured, I immediately think they are going to die

I start to panic, get angry, rock back and forth and cry

I don’t like that my mind does this, always thinking of the worst

I just wish I could be normal, not always think of what could go wrong

I’ve lived this way for far too long

I’m sick of living life constantly in fear

I’m sick of the anxiety attacks, i’m sick of the tears

I wish there was a way to finally be free

Be rid of the fear, to be a new me

Because what I am doing is not living no,

It’s just existing in a world, and not knowing where to go

I’m tired

I’m Tired

 

If you looked at me and asked how I was

I’d tell you the truth

I’d tell you i’m tired, though it’s no use

Because to you tired means sleepy

And though that is true

My tired has a ton of more meanings too

I’m tired of never being good enough no matter how hard I try

I’m tired of condescending people, secrets and lies

I’m tired of no one taking me seriously

Doctors, teachers and family only going by what they see

But they don’t know how I feel everyday

They don’t see the pain and suffering, though they think they may

I’m tired of my achy body and bones

I’m tired of being so sick and in pain, i’m forced to stay home

And miss out on all the fun and memories I could have made

Because I was too sick to go, or just to afraid

I’m tired of my anxiety always getting in the way

Making it difficult just to survive each and every day

I’m tired of my depression constantly bringing me down

I miss my smile and I hate this frown

I’m tired of my eyes burning from all of these tears

And i’m tired of all my irrational fears

I’m tired of my emotions never staying in my control

I’m tired of feeling broken, I just want to be whole

I’m tired of hurting the people I love again and again

I’m tired of pushing away all of my friends

I’m tired of school, of work, of home

I’m tired of feeling like I have no place to my own

I’m tired of never feeling understood

I’m tired of constantly feeling bad, I just want to feel good

My soul is tired, my body is too

And no amount of sleep can fix this it’s true

I’m tired of being tired all the time

Won’t someone please show me how to climb

Climb this mountain and get to the other side

Where my soul won’t be tired anymore and I can finally feel alive

So yea I’m tired but don’t you see

Tired has so many more meanings to me