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.

Say What You Wanna Say and Let The Words Fall Out


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Life is funny sometimes. I can’t apologize for my last post, because it was what I was feeling at the time, but it is slightly ironic that it came just after receiving an award for being an inspiration. Unfortunately, living with a chronic illness, especially without a diagnosis, is a constant roller coaster of emotions. One day you feel like you have everything all under control – your life, while maybe not going exactly as planned, has a purpose and you are stronger for overcoming more than you ever thought you could do. And then out of nowhere, you’re handed a reminder of how human you really are. And it’s okay to be human, in fact, it’s exactly what you are supposed to be.

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I often struggle with who I am and what is expected of me ever since I became sick. I’m constantly feeling guilty for not be able to do this or that, or letting this person down…. again…. It really makes it hard to maintain stable confidence in yourself when you are constantly showing pieces of yourself to different people. It feels very fake and rehearsed. Who I am and what I show depends on who I am around and what situation I am in. For example, if I am in public of any kind, no matter how much pain I am in or how much anxiety I have, I will play it off like nothing hurts and put a smile on my face. At work, although they know I am dealing with medical issues, I will put effort into looking nice, a smile on my face, and be cheerful and helpful no matter what I am experiencing on the inside. I even did this at doctor’s offices at first. I got so tired of doctor’s telling me it was anxiety or depression, when I knew it wasn’t, that I played off my symptoms at times or only gave them a very limited version of how it was affecting my life.My husband, at one visit with my doctor, pointed out that I could be crying hysterically in pain or dry heaving in the car on the way to the clinic,  but then be as normal as can be while I sat in the waiting room or on the exam table, only to return to “myself” when we returned to the car. 

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It’s not that I am trying to hide who I am or that I want to be a fake person, but often there’s consequences of showing your true self. All of us with a chronic illness have done this – probably more than we’d like to admit. How many times have you answered the question, “How are you doing?” or “How are you feeling?”. We all know no one expects to hear:

“Oh god I am still doing awful. I was up all night AGAIN in the bathroom, I wasn’t able to get any sleep. The rashes all over my body are getting worse. My lymph nodes are swollen and I feel like I am going to DIE, like literally. I worry about dying all the time. I’m bleeding from every orifice this week. What a flair I am having! I had to miss work again, I’m probably going to get fired. Then I’ll be homeless shortly after. Life is just not fair…. Nope, they haven’t found anything yet. I have no hope I’ll ever get a diagnosis anyways. I keep getting told it’s in my head so often that I do think I am crazy sometimes. And some days I think there’s nothing to work and live for, but I don’t want to kill myself either. C’est La Vie”.

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Instead, we just say “I’m fine” or “Good” “Oh yeah, still working with my doctor’s and going through medical tests. I know they’re real close to finding a diagnosis. I am so lucky”.

Most people won’t understand and some may not care if we told them how we truly feel. I’ve learned to be a great actress in my illness. I can be who ever YOU need me to be or however YOU need me to act. It’s just easier for both of us.  

Ultimately, it’s my way of self-protection; building a wall around this part of me that I am embarrassed of. I want you to see the strong girl who handles so much and works so hard, who is inspirational and motivates others. I want to be a cheerleader, a hero, the brave one… I want other’s to look up to me and like me for me. The girl who is an UNDIAGNOSED WARRIOR. I am those things, too. I’m also many things to many people:

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  • a puppy and bunny mommy
  • a sister
  • an aunt
  • a daughter
  • a family member
  • a friend 
  • an associate
  • an employee
  • a student
  • a patient

As I have gotten older, I realize it’s alright to be each one of these things. It’s truly not being fake or a coward. Because you some part of you IS that person. And maybe it’s not everyday that you have the strength to put on your makeup, and you’re angry or emotional because you have dealt with so much this week. That’s OK too. Feeling guilt is a useless emotion,  but sometimes it feels so good to just cry so  damn hard that it hurts. Or be so angry that you just need to SCREAM OUT AT THE TOP OF YOUR LUNGS! It’s healthy.

My therapist told me once that I shouldn’t feel bad about myself when I feel frustrated or when the anger builds up – she says that is WHAT KEEPS ME GOING AND FIGHTING. And I think she is right. It may not be pleasant. In fact, it might seem ridiculous at times, especially when you’re set off over something seemingly so small and stupid, but really is just a reaction to all the things you have slowly built up inside of you. How else can you continue on a journey like this, when you are constantly beat down over and over by your symptoms or by other people? It’s easy to give up, to lay down and hang the white flag. But it’s THESE MOMENTS, as crappy and unfair as they are, that really make you push harder and want to FIGHT as hard as you can to PROVE EVERYONE WRONG. And someday you WILL!

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You can be amazing
You can turn a phrase into a weapon or a drug
You can be the outcast
Or be the backlash of somebody’s lack of love
Or you can start speaking up
Nothing’s gonna hurt you the way that words do
And they settle ‘neath your skin
Kept on the inside and no sunlight
Sometimes a shadow wins
But I wonder what would happen if you

Say what you wanna say
And let the words fall out
Honestly I wanna see you be brave

With what you want to say
And let the words fall out
Honestly I wanna see you be brave

I just wanna see you
I just wanna see you
I just wanna see you
I wanna see you be brave

I just wanna see you
I just wanna see you
I just wanna see you
I wanna see you be brave

Everybody’s been there, everybody’s been stared down
By the enemy
Fallen for the fear and done some disappearing
Bow down to the mighty
Don’t run, stop holding your tongue
Maybe there’s a way out of the cage where you live
Maybe one of these days you can let the light in
Show me how big your brave is

Say what you wanna say
And let the words fall out
Honestly I wanna see you be brave

With what you want to say
And let the words fall out
Honestly I wanna see you be brave

Innocence, your history of silence
Won’t do you any good
Did you think it would?
Let your words be anything but empty
Why don’t you tell them the truth?

Say what you wanna say
And let the words fall out
Honestly I wanna see you be brave

With what you want to say
And let the words fall out
Honestly I wanna see you be brave

I just wanna see you
I just wanna see you
I just wanna see you
I wanna see you be brave

Read more: Sara Bareilles – Brave Lyrics | MetroLyrics

Very Inspiring Blogger Nomination Award

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Thank you Sandycademy for nominating me for The Very Inspiring Blogger Award. It’s truly honor to be chosen for such an award. I am grateful to anyone who reads this blog and my stories. All I wanted when I started this blog was to find an outlet and a way to remember my journey, but it has brought me so much more than that. I’ve found validation in knowing that I am not alone, acceptance from those who didn’t understand what I was going through, and most importantly, motivation and encouragement from reading other people’s perseverance in overcoming their own struggles. So thank you.


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RULES:
–  Thank the person who nominated you for the award.
–  Add the logo to your post.
–  Nominate ten (10) bloggers you admire and inform them of the nomination.
I nominate…

  1. https://itsapotslife.wordpress.com/
  2. https://indisposedandundiagnosed.wordpress.com/
  3. https://livingwithchronicpainandyournewreality.wordpress.com/
  4. https://sexinthekitchensink.wordpress.com/
  5. https://wordpress.com/read/blog/id/84535539/
  6. https://heidijoneschronicillness.wordpress.com/
  7. https://chronicallysarahlynn.wordpress.com/
  8. https://onlyyoudecide.wordpress.com/
  9. https://thrivingonillness.wordpress.com/
  10. https://cassiefibro.wordpress.com/

Be Strong, Believe…


Today was a good day.

I felt sick last night.

So sick, that in fact I wasn’t able to sleep for more than a few minutes.

That’s because I ate food

(chicken noodle soup)

so I would have energy today.

To go back to work.

The stress about going back probably didn’t help.

I was tired and scared.

But I went anyway.

My co-workers and friend were excited to see me.

So was my new manager and team.

Everyone visited me during their breaks and sat on my desk.

Everyone said I looked good today.

Granted, I had a lot of make-up on to cover up the lack of sleep,

the lack of nutrition, and the illness that shows my face worn.

But it was nice to be missed.

I felt nauseated and sick ALL day.

I had bad cramping, a good amount of bleeding.

My legs and feet hurt because I haven’t walked that much in weeks. 

Months really.

It was cold out.

My joints hurt. My rashes were prevalent.

My mind was moving slow and there is so much new that I have missed

while I was gone.

But I made it.

I didn’t die. I’m still alive.

It’s still going to be an adjustment.

But today was a good day.

Managing Chronic Illness and Work

There’s is nothing scarier than going back to work; undiagnosed and still sick. 

So how do you get through work and chronic illness?

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  1. Whether you choose to disclose your illness or not is completely up to you. There are pros and cons to both sides. For me, I hid my illness, both in my work and personal life, for a long time. But there comes a point when that may not be possible and that’s OK. I’ve been honest with work with what I’ve dealt with. So far, this has helped me more than it has hurt me. It hasn’t made me stop fearing the possibility of someday losing my job or not getting promoted because of it. But what it has done is allowed me to be true to myself, not have to make up excuses for my behavior or absence, and gain understanding from my co-workers. I’m also eligible for accommodations to assist with keeping my job while still learning to manage my condition. What it won’t allow me to do is use my illness as an excuse to not be committed or do my job properly. And even though I won’t feel good everyday, and many days I may not have the energy to perform at my best, as long as I do the best that I can, than I have accomplished something truly great.

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2. While it’s obviously more comfortable and easier to stay in your pajamas all day when you feel awful, putting on nice clothes, doing your hair, and putting make-up on can do wonders for your self-esteem. The boost in your self-image will only help to increase your mood, decrease your anxiety, and improve your overall well-being at least a bit. For many of us dealing with chronic illness, the thought of all this work is exhausting and overwhelming. Just know, it doesn’t have to take you hours to get ready. Plan your outfit the night before, have a quick and easy routine for the morning, and maybe take a shower the night before. For me, getting up a little early to watch the news while drinking coffee before rushing to get ready gives me time to wake up, get an idea of what I need to do that day, and keeps me from having anxiety of the rush to work.

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3. Now, depending on your condition, this may or may not apply to you. For me, it’s probably the only normal thing I can tolerate. And I can personally thank Starbucks for keeping my weight at an average level, because about 600 to 1000 of my calories comes from them daily. You can call me an addict all you want, but I can’t remember a time when I didn’t have ridiculous amounts of fatigue. Plus, it enhances mood and is truly a ritual to get the day going.

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4. Probably the most important: The chronic illness survival kit.  C’mon, you know you all have one. Whether it’s on your bedside table, your purse, or in your work desk, there are just things we need to have with us all times. Here’s what’s in mine:

  • Mints – For Nausea
  • Medications
    • Daily Medications
    • If needed medications (for nausea, pain, headaches, heartburn, allergies, etc.)
    • Inhalers
  • Monitoring Equipment (Oximeter and BP cuff)
  • First aid kit (because being chronically ill also means chronically clumsy)
  • Snacks – For when I’m able to eat or know my blood sugar is low.
  • Water – A necessity
  • Coffee – Also a necessity (for me)
  • Cell Phone with Emergency Numbers
  • My Warrior Doll – To remind me that I am strong and everything IS going to be ok.
  • Chapstick
  • Pen and Paper – to write symptoms or any notes
  • Chewing Gum/Candies – Also for nausea

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5. Be confident in yourself and what you are capable of. I believe in positive affirmations. Read them or even say them out loud every morning. Keep a journal. Post them on your blog. Make a Pinterest folder. Be inspired and find your purpose for the day.

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 And Always Remember:

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