Living with Sarcoidosis – Kallina

I haven’t been to war, but I have scars,
It’s these scars that tell my story, I survived!!!

A most delightful interview with a young lady about to be wed!
Living with Sarcoidosis – Kallina

Here is another interview based on conversations about Sarcoidosis on Facebook. It is my hope that as people have more and more words they can be empowered to speak with medical people. In time we will discover patterns that will be beneficial in both the diagnosis and treatment of sarcosidosis. The interviewer is Carl DeLine, administrator of the group Sarcoidosis and the interviewee is KALLINA SATHABRIDGE.

KALLINA, thank you for being willing to share with us. It is my hope that as we talk this conversation will prompt others to think of specifics they can share as well. This will be an open forum and is not intended to reveal “personal” information other then what is opinion, concept, or historical information relevant to the words/conversation we are having.

Before I post this interview I want to say the usual questions I raise were very quickly moved away from as Kallina related a very difficult part of her story. A part that so many of us will understand and identify with.

carl: Kallina, where do you call home?

KALLINA: I am from South Africa.

carl: what type of work do you do

KALLINA: I’m a business manager more specialized in sales and marketing.

carl: When were you first diagnosed with sarcoidosis?

KALLINA: 30 January 2008

carl: How did sarcoidosis present itself?

KALLINA: So this is my story ….on the 8th of January i felt a lump in my neck area. I went to my GP and he sent me for Xrays. I know instantly when they called me to do my Xrays again that there was something wrong with me.

I remember my prognosis was TB, lymphoma or sarcoidosis…..

my GP referred me to a specialist.

I had to wait two weeks before a got an appointment with a specialist.

On the 22 Jan which is also my birthday i met with the specialist and after looking at my Xrays said i need a biopsy….so i was admitted into hospital the next day.

My biopsy was done and was diagnosed with sarcoidosis….at that time….i referred to it as sarcoid WHAT!!!!!

he he he

I was 28 years old

carl: same age as me when I was diagnosed

KALLINA: and how long are you living with it

carl: I am now 63.

KALLINA: wow that is awesome and can i turn this interview around….how has the journey been?

carl: I will answer all the questions you want. But please finish your story. I get to relive some of my story through you.

KALLINA:and sooooo my journey began…….

carl: What road has sarc taken you? what have been some of the symptoms and eventual outbreaks?

if u want to while i am busy typing read my blog

carl: great where?

KALLINA: http://www.kallina.blog.com

Over the Bridge

www.kallina.blog.com

I haven’t written in a while though but its outlines my journey with sarc.

I went through a journey of hate….self hate and hating the world….why me????

why???

my family couldn’t understand and neither could anybody else believe I am sick

but in fact to them I really wasn’t sick.

carl: wow-hate is a stroooong word, you obviously, by the words in your blog have moved on

KALLINA: Yes hate is a strong word but i really felt that way…

i felt like i had my whole life ahead of me and its going to fall apart

this was mainly due to me being uneducated about sarcoidosis…..

carl: so how did you start to glue it back together?

KALLINA: there was no information available in South Africa

and i tried to get into contact with people from here also living with sarc but with no luck.

thats why i started my group Sarcoidosis SA

carl: Tell us (me ) about your group? What is the name and how has your group been helpful. SARCOIDOSIS SA -LETS BEAT THIS!!!

KALLINA: I started to learn…about sarc my body and other people that have it. I started many friends around the world…and then i got hope….Linda Ann was my first contact and Stephen Waugh…they made me feel better and that there was hope.

carl: what happened?

KALLINA: My group was intended for people in South Africa to share our experiences and to connect but unfortunately there are not many of us here but i connected with lots of other people around the world.

carl: what parts of their stories connected with you?

KALLINA: the fact that we had sarcoidosis

They were young also but living normal lives

carl: Your blog: Over the bridge – Winds of change brings us to the words of identification, denial and acceptance. Did your new found friends talk about these things as well?

carl: what is normal- it sounded a bit like others were not accepting of your illness yet you knew differently?

KALLINA: yes as i said in my community we don’t talk about illness and if you “have” something is all hush hush….

It was the usual oh you have a disease….then a look of horror

carl: —-in my head I am remembering- it has been so long.. what is unique about your background?

Im Indian. The Indian culture, we have a close minded background,

carl: like leprosy to be ill—-I feel like someone just stuck a dagger into my chest—-I remember-wow

KALLINA: Indians don’t talk about “bad” things

carl: yes- a culture in denial

KALLINA: U become like the talk of the families….they would say things like did u hear Kallina is sick….and they would go oh what did she do? and then its shame such a nice girl sooo sad

carl: Oh Kallina- with sarc, among my Indian friends I had become “dung”

rejected – untrusted

KALLINA: Sooo u understand….good

carl: nothing Is good about it- I am so sorry for your pain

KALLINA: at the time i had a boyfriend…and on those days when i didn’t feel well he would tell me get up you got things to do…get up and stop pretending

carl: if this is too painful it is up to you about what part of this we tell or write

yours has been a journey of discovery

KALLINA: you can write it all… I am not ashamed…I have embraced who I am and what I have become and my fight to survive…I’m a survivor and if you don’t respect that then you don’t know where I came from …thats my motto

carl: OK- then I will with your permissionI will turn the interview and share with you a new thought

I find listening to you so exciting —- you are on a very special journey!

KALLINA: yes it is…i must say sarc has definitely added a spicy dimension to my life

in many ways sarc is destructive- terrible. I have discovered the climb out of the valley has so much to offer

yes and wow i have become a better person because of it…the fight…the strength the will to get out of bed kicking and screaming too

carl: LOLOL tears of laughter – yes

yes true….a roller coaster ride

carl: OK I am starting a new page called Join me in the Expedition – the journey to discovery

The idea is to daily discuss what you are discovering in your life and life around you

how sarc has been the lenses toward this revelation

does this make sense to you?

KALLINA: Yes I understand fully

carl: I know this is real to you. Can you reflect on how sarc has given you a different/special insight into life

KALLINA: When people say live each day to the fullest….ppl normally has flashes of a holiday or money bags or the most expensive things in life

When I say live life to the fullest….its being kind…smiling that your jaw hurt…helping somebody less fortunate…and most of all be appreciative that you have got one more day

carl: thank you- I speak of the integrity of each moment, the integrity of creation- does this spark a thought for you?

KALLINA: Yes….treat others like you would want to be treated and will be treat you the way u want to be treated…..

if you are kinder then somebody will be kinder to u

its the circle of karmic action

carl: you mentioned your own sense of brokenness – how do you see your brokenness opening you to a richer life?

not money

KALLINA: he he he i never think money.

I am trying to inspire…motivate and even make a difference in some way in the lives of other people

I started with my sarc group creating those little pics with sayings trying to build awareness and give hope

carl: keep talking–I don’t want to interrupt

KALLINA: so well i must tell you that I have been so lucky and blessed .

I have very like symptoms of sarc and almost no pain except for my legs

so i figured and also believe that everything happens for a reason…if the bad comes into your life for a reason

Also there are so many sarc survivors that have it bad….and if I can give them a smile or hope on that bad day with a pic then thats awesome

I’m shutting off now but will carry on ….see u soon

carl: Kallina and I have moved toward the purpose of the new page being created. We will continue this discussion at a later time. But please understand what she is saying. Her’s is a very special word to each of us.

 

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