Somewhere you’re not coming back…


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The highs and lows of chronic illness are overwhelming. One minute I am strong and powerful, feeling like I can take on the world. The next, I feel like my world is falling apart all around me. Hour by hour and even day by day, life changes so drastically: I’m tired, I feel good enough, I am violently sick… I’m happy to be alive, I’m sad to live this life, or I’m numb to my feelings. I realized, after the emotional train-wreck that was my day was today, that being sick reminds me of how life was shortly after my mother died… I am stuck and lost within the five stages of grief…


The Five Stages of Grief in Chronic Illness:

1. Denial 

“It’ just a cold, it’s nothing.”

“There’s nothing wrong with me.”

“The doctor’s have no idea what they’re talking about.”

“I’m fine, everything is fine.”

“This can’t be happening to me.”

“It’s not getting worse, I promise.”

2. Anger

“Why me?”

“Life isn’t fair!”

“I hate this!”

“I’m sick and tired of being sick and tired.”

“I don’t want to do this anymore.” 

3. Bargaining

“Maybe if I do better…”

“God, if you make this go away I promise to…”

“If I keep doing good things, maybe my luck will turn around.”

“I promise I’ll try harder…”

“If only I had kept searching for answers…”

“Maybe I can talk to my doctor…”

4. Depression

“What am I going to do with my life?”

“What’s the point?”

“Life isn’t worth living anymore.”

“How am I going to afford to live? Or my medical bills?”

“I can’t do this anymore.”

5. Acceptance

“I can choose to give up or I can choose to fight.”

“My illness doesn’t define me.”

“I choose to keep going, despite my illness.”

“I have a greater purpose.”

“I will raise awareness to my disease.”

And today I felt all of these.

“I can’t believe this happening, not again…”

“I hate being sick. I hate this life. I hate not having answers. I hate the unknown.

I hate, I hate, I hate…”

“I need to talk to the doctor, it’s the only way…”

“I can’t do this anymore…”

“I have no choice BUT to keep moving forward.”

I Will Stay Positive…Maybe.

I grieve for what I have lost due to my illness. And what I won’t have in the future, either.

But mostly, I grieve for the loss of myself.

For all that I was and could have been.

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What My Chronic Illness Has Robbed Me Of:

  • My Dreams:
    • I wanted to do so much with my life. I was set to have a bright future.With all I manage regarding my health, I can only imagine the amazing things I could have accomplished by now. Imagine if I put all my energy into bettering my life, where I’d be?e3feea180cd8f191cdb9030765e8e9bd
    • Instead, I balance:
      •  Doctor’s appointments and medical testing, sometimes every day of the week and multiple appointments in the same day.
      • My Symptoms.
      • Medications.
      • Medical Records.
      • Scheduling and coordination of care.
  • There’s no big house with a white picket fence in my near future. Maybe not ever. Chronic illness is too unpredictable for such a big commitment.
  • Traveling the world.
  • My Career:
    • I’ve always worked hard, been an “above expectations” employee… continuing to learn, grow, and advance in every job, even when I started getting sick. But then it got worse…
    • I’ve had to change my career goals so many times, I feel like I am back in school… What do you want to be when you grow up? I Don’t Know!” ea7374914206b8416b76baac92fa71a2
      • Marine Biology?
        • nope
      • Real Estate?
        • nope
      • Veterinary Medicine?
        • nope
      • Management/Leadership
        • nope
      • Insurance
        • Health? -nope
        • Property & Casualty? -not sure anymore?
    • What’s next?
      • Veterinary Forensics?
      • Forensic Psychology?
      • Health Psychology?
    • My current job seems like they’re finally fed up with me. I can’t do disability because I can’t PROVE how sick I am.
  • My Ability To Do The Things I Love:
    • I had to quit competitive swimming.
      • and competitive cheerleading.
      • and roller derby.
      • and dance.
      • and surfing (when I was in FL).
    • I can no longer go on hikes or go camping.
    • Go to concerts and shows.
    • Set design/horror make-up/act in haunted houses and productions.
    • Go on long drives, exploring new places.
    • Traveling.
    • Volunteer with animal rescue groups.
    • Ghost hunting (don’t judge me…)

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  • My Appearance:
    • My hair keeps falling out.
    • I’m not “toned” because I can’t exercise like I used to.
    • Despite that I hardly eat, I often gain weight quickly. Then I lose it. Then I have stretch marks from the constant changing in my body.
    • My body is plagued with rashes and sores.
    • I can’t wear makeup most days because of how sensitive my skin has become.
    • I’ve lost pigment on my back, which is now also starting to happen on my chest, stomach, and arms.
    • I have giant, dark bags under my eyes… always….
    • Mostly, my confidence. And my smile.
Nevus Anemicus

Nevus Anemicus

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New rash after sun exposure

New rash after sun exposure

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Alopecia Areata

Alopecia Areata

Loss of Pigmentation on neck

Loss of Pigmentation on neck

My Relationships with Others:

  • My husband.
  • My family members.
  • My friends.
  • Some days, I feel like I can’t even relate to most people anymore.
    • I feel awkward and different.
    • I feel jealousy.
    • I feel disappointment. 

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  • My Faith:
    • in the health care system.
    • in people.
    • in medicine.
    • in myself.
    • in God.

I grieve often for all the loss in myself.

For what once was or could be.

It’s too easy to remember all the things that are gone.

That illness has taken away from us.

I wish I had appreciated and loved myself more.

That I had done more, lived more.

So many regrets….

But…

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What My Chronic Illness Has Given Me:

  • Strength and the ability to keep going, no matter how frustrated I get.
  • A great deal of medical knowledge I would have never gotten otherwise.
  • The ability to understand what it’s like to hurt, whether mentally, physically, or emotionally.
  • To feel and understand the struggle of others. AND the WANT to know other people’s struggles.
  • To draw awareness to the undiagnosed, the chronically ill, the invisible…
  • A drive to never stop searching for answers. In every area of my life.
  • Patience. Maybe not so much in wanting a diagnosis, but in everyday life. Like doctors offices.
  • Appreciation of those who stuck around and took the time to understand what it’s like to be sick.
  • The understanding that I can’t control everything, including my own life.
  • That knowledge that change, no matter how hard, can lead to good things.
  •  Love by so many people.
  • Friendship and understanding from other’s also going through a similar journey.
  • The ability to cry, smile, scream, laugh, and sigh… all within one conversation. Or blog post.

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But the biggest thing I learned is that there are so many ups and downs in chronic illness.

And if I hate how things are today, tomorrow is always a new day.

My future is not set in stone, and although I can’t make plans, 

I still have the option to live this life how I choose.

Hopefully find a diagnosis.

And make a difference in this life.

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Tonight I cry, but maybe there will be peace tomorrow.

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