Interview With Karissa

IMG_5512IMG_5523Where are you from? Tell me a bit about yourself. What is your name, age, and disease/invisible illness/mental health? I am 17 years old and from Ohio, America. I have Elhers Danlos Syndrome type 3, postural orthostatic tachycardia syndrome, eczema, mast cell activation syndrome, degenerative disc disease, scoliosis, and vocal cord dysfunction along with severe allergies. This can cause me generalized anxiety and sometimes even some depression.

When did life change for you? When I moved to Ohio from Pennsylvania when I was 15. I suddenly became injury prone. I remember my first big injury was frequent subluxations of my ulnar nerve, originally at cheer camp. At that time, I had no idea anything was really wrong. I truly thought I was just being careless and got hurt as a result.

What was life like before diagnosis? I was always a healthy, energetic, and happy girl. I have always been extroverted and full of life. I would bruise easily, but I always brushed it off. After all, what kid doesn’t get hurt now and then?

How has your diagnosis changed your life? I have had to quiet high impact sports, specifically cheerleading. I also have appointments to help strengthen my muscles and help control my symptoms.

Please describe the best you can a day in the life of you? I wake up and do physical therapy stretches. Then during the school year I attend a rigorous high school and during the summer I go to work. I am a nanny for two wonderful children. I am also a hostess at a local pizza parlour. I typically wear some type of brace for a current injury or to prevent one from getting out of hand. I also have physical therapy and other doctors appointments once a week or so.

What was/is the most challenging thing you have faced because of your diagnosis? Everything went silent. The monitors and doctors panicked voices . Everything went dead. The first night was the worst: I was in the paediatric intensive care unit. Stress levels rising, hearts breaking, and tears being cried. Everything went quiet as I struggled to breathe. When I was 16 I went into full fledged anaphylactic shock. It was terrifying. The not always knowing why my body does what it does is the scariest and most difficult part for me.

Do you find that you can keep up with others? Sometimes it is difficult to keep up in the social scene, because there are things too hard on my body to do. However, for the most part my school life has stayed similar to those in my class as far as grades and extracurriculars go. Getting sick really showed my who was there for me.

What would you tell others living with your diagnosis? Some days, quitting will seem like the only option. But I promise, it NEVER is. Sometimes living feels life just surviving, but truly one day you WILL thrive. We are on this earth for a purpose.

What would you like to tell others that don’t live with a similar diagnosis? Please please please never ever judge what you do not live with. You never know what it takes for someone to get out of bed and face the day. Additionally, many people hide their illnesses because they don’t want to be looked down upon. Someone’s frequent injuries are real and tragic to them, not something to laugh at or make fun of.

What have you learnt on your journey? I’ve learned, as bad as things get, it ALWAYS goes up. In getting sick, I learned to balance on friends and family. In missing a day of school here and there, I learned how to better communicate with teachers and my school community. When in the hospital, I found my future dream career as a child life specialist. When faced with scary obstacles, I learned to put my faith in my religion.

Is there anything you would like to add about your journey? If you take one thing from my story, please understand I am not weaker than other people because I have this disease, in fact in many ways. I’m stronger because of it. This disease was NOT a choice, but it is something I have to live with and learn to thrive with. Overall, just love everyone. You never know what someone is going through behind closed doors. You can follow my progress and treatment or ask questions on :

Instagram: karissalewis2018

Twitter: karissalewis417

Pinterest: karissa2018

Wanting to learn about some of the conditions/diseases mentioned? Here are some links…

What is EDS (Ehlers-Danlos Syndrome) https://ehlers-danlos.com/what-is-eds/

What is POTS (postural orthostatic tachycardia syndrome) https://rarediseases.info.nih.gov/diseases/9597/postural-orthostatic-tachycardia-syndrome

MCAS explained https://patient.info/doctor/mastocytosis-and-mast-cell-disorders

Vocal Cord Dysfunction and what it is like http://www.aaaai.org/conditions-and-treatments/related-conditions/vocal-cord-dysfunction

“Thank you so much Karissa for sharing your journey with me and the rest world. You truly are brave. Hopeful always.” -Anna

A Day Off By Stephanie Heads

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A Day Off
By Stephanie Heads

I want to sit and read my book
I want to escape the pain
I need to be left alone for a while
To sit and go insane

I can’t face the fight today
And tomorrow will be the same
I’m anxious and exhausted
I’ve got several demons to blame

I haven’t slept for ages
I drift in and out of dreams
I’m fighting but getting nowhere
Or at least, that’s how it seems

I’ve taken all my tablets
I’ve breathed deeply, in and out
But I’d rather go real crazy
Be loud! And scream and shout!

Time to bend and break a bit
I can’t always plod on through
I’m an angry, anxious zebra
Got to do what I need to do

No, I don’t wanna talk about it
Don’t wanna be prodded and bent!
Don’t wanna deal with EDS today
A flexible demon I really resent

So I’m not gunna face it today
Gunna ignore it tomorrow too!
Zebras need a break sometimes
A quiet day off or two

I don’t want sympathy or “oh poor you’s”
Just some understanding when I do what I do.
Just get it when I sit and cry
Or when I lash out at the pain
I get tired of going through this
Every day and over again!

Just give me a chance to get my shit together
And to get my head screwed on
I’ll be back before you know it
Standing, smiling, zebra strong!

I can’t always be a brave gal
I can’t always push and fight
Sometimes I need to hide away
To rest and put things right

So please be patient and aware of things
I’m doing my very best
Don’t worry that I’m giving up
I’m just chilling and having a rest

And if you see another struggling
Looking tired, slow and sad
Be patient and be kind to them
They might feel really bad

One day you might feel awful
And need a helping hand
I’ll offer you my spoons to share
And I’ll get it, I’ll understand.

We all get worn out sometimes
Sometimes we’ve had enough
We can stop and rest but we must never give up
Coz we’re made of stronger stuff!

❤❤❤❤❤❤❤❤❤❤❤❤❤

Check out Stephanie’s other poems and blog posts on her page here https://annawerrunblog.wordpress.com/steph-may-heads-blog-page/

 

Everyone’s Disease Affects Them Differently

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As much as I find it awesome when I see someone share something about one of the diseases or disorders I have, when I read how much they are accomplishing in the publics eye it makes my heart hurt a little. I am not the same as the person you have heard about. I live with one similar disease and that disease affects me vastly different.

I can not do particular movements because of the preexisting damage to my cartilage, tendons, ligaments, and blood vessels. This is only due to one of my illnesses. I am vague most of the time trying to explain my experience, I have found the broad term of being chronically ill can help others to understand.

However, I am not like everyone else that has, Ehlers danlos syndrome, dysmotility, postural orthostatic tachycardia, chronic migraines, perniosis, mast cell disease, cancers, pancreatitis, GERD… etc… Simply because I have many diseases/disorders my body and my experience are different. Please don’t compare me to someone you know that may have one or two of the things I have.

There are different spectrums of those affected, not everyone with EDS dislocates everyday like I do, not everyone with EDS can have kids (I will never be a mom), not everyone with dysmotility can eat everything out in front of them, not everyone with POTS blacks out, not everyone with mast cell disease goes into anaphylaxis, the list could and would take all day. Some people are so mildly affected they can continue to do their everyday normie life with no illness interruptions. Where others are permanently discharged from the normie life style.

The point is do not lump me in with one or two people you have heard of that have any of what I have. My experience is mine and mine alone. I have never met another person on the internet nor in person that has all that I have, and I possibly never will.

Please be understanding that my case is different for the fact I am deteriorating, not everyone with EDS, POTS, MCAS, and everything else that ails me will end up like me. My diseases are not on the surface unless I rash, dislocate, or begin to vomit because my throat is backing up (literally backing up, and will not allow me to eat), EDS is ravaging my body, not everyone with EDS will be like this.

Seeing people with similar diseases/disorders do things I can not do because it could end me makes me frustrated, I am happy they can experience it and happy they are not like me. It hurts when someone near and dear to you says, “I know someone with EDS to and she has children, that means you can do it to.” “Stop limiting yourself, you can do whatever you put your mind to.” I can simply put on my normie mask and agree, but the broken part of me that looks for understanding, yet feels lost and confused as to the lack of understanding. The lack of empathy, the lack of tact when life is ripped away from you by illness.

Understanding anyone with chronic illness means you must be open-minded. You must know that someone who is chronically ill is trying the best they can. They maybe stuck in depression and feeling abandoned by their loved ones. Don’t give up on them they still need someone to show them someone cares. Not everyone who is chronically ill gets to the place of acceptance. Don’t rush someone’s journey to get them through the grieving process, they need to come to their own realizations themselves.

Everyone’s disease is different, just like the same diseases can affect everyone differently. Please keep and open mind always. Please keep your heart open for those of your loved ones who are dealing with illness. Sometimes just offering an ear to hear can help. “To listen is to love.” -Nathan W. Bingham

Hopeful always.

💗Anna

Please feel free to check out my previous blog post about “Normie Guilt,” here https://annawerrunblog.wordpress.com/2017/06/04/normie-guilt/

Normie Guilt

IMG_5336.JPGPerhaps calling someone with no illness a normie is unkind. This is not my intent. People have called me a “sickie” before because they didn’t understand my chronic illness. We all have our journey, please understand this is a part of mine.

What is Normie Guilt? Guilting someone into doing something is a form of manipulation, when this is done by someone that has their health this is called “normie guilt.” I understand that people who aren’t sick tend to think they are helping by repetitively texting, “checking in,” or “encouraging,” us to get out and enjoy our sick lives.

The difference between encouraging us the “chronically ill,” to get out and enjoy our lives and do what we want. And the wanting us to spend our spoons on you are two different things. Now it’s not that chronically ill people don’t want to spend their spoons on their loved ones, whether it’s a friend, family member or spouse, it is simply when you have a limited supply of energy you want to be able to spend that energy on things that you love to do. For me a few of these things are crocheting (when my fingers, wrists, and shoulders are not dislocated, because sometime my elbow destroys that dislocation party), other times, it’s paintings, or spending quality time with a family that I dearly love and miss immensely. Now if someone comes to me and says repetitively that I should be taking more time for myself and doing things that I love, when I am all ready doing this, this is when (the chronically ill person) realize that someone else has their own motives. It would be a lie to say that no one had their own motives for how they acted or interacted with others

The comment as much as I am sure it is heart felt and full of love saying to me to “save all your energy for this event,” is putting pressure on me. Whether this event is something I want to go to or not. Sometimes yes I do push myself much more than I should, that is my choice and I am the one that deals with the blackouts, anaphylactic reactions, the heart palpitations, the chronic dislocations and so much more that if I listed it would possibly make the reader sick just from reading it. The point is please don’t push me, don’t “expect” me to do or be something you thing I should be. I will do what I can do with what I have been given. I am not intentionally ignoring you, I am sick I am fighting for my life daily through things that would make most people’s head spin right off like a top. I want to be at your event, your dinner, your party, your house and spend time with you. I will do my best, but should I cancel please don’t “normie guilt,” me when you don’t know the challenges I face.

I don’t get to spend all the time I want to with my friends because I’m not a super hero. But I do get to spend some time. I know it would be nicer to each other more often, but I am sick and I do need time to rest. Regardless of who you are in my life I will do my best to play the normal game (normal game meaning I will try to act normal) the fact of the matter is the list of things I am living with is growing and none of it is fixable.

I will always do my best to keep a smile on my face, I will always have hope in my heart. Sometimes life gives you life threatening conditions for a reason. To those of you whom love and support me thank you. For those of you learning about my illnesses, please take time to place yourself in my shoes. Being diagnosed with over fourteen things changes you. I still haven’t told my whole story of the different diagnosises I have received and I think I would like to share that here on my blog, but that is for another day.

To all of you living with or loving someone who is chronically ill please do not tell them how to spend their energy. No one really likes being told what to do. When doctors are telling you what to do having others do it to you is hurtful even if you have the chronically ill loved ones best interested at heart. Please respect me and my decisions, you may not agree with them, I may not agree with all yours. I am truly living to the best of my abilities.

Don’t set unreasonable expectations because my illness is unpredictable, guilting me of anyone else with chronic illness will not help us it makes us feel worse about a situation we can not control.

Thank you for your time. Please take care of you, you matter and do what is best for you and your energy. Don’t let others guilt you into manipulation.

Hopeful always.

💗Anna

Please feel free to check out my previous blog post, “Abuse And Chronic Illness.” https://annawerrunblog.wordpress.com/2017/05/18/abuse-and-chronic-illness/