A PH Story Continued

Part 2 by Eye Shaa Malik

A PH Story Part I

My story continues...

I normally visit my doc once in two weeks for regular checkup but my last worst hospitalization was on 6 April 2014. It left a mark on my mind and it brings tears in my eyes when I recall that day. I've got severe heart arrest at 3 am I was at hostel nobody was there to take me to hospital I was extremely breathless with hell pain in my heart. I was brought to heart center at 8 am next morning (that added to the severity of stretch of heart hole's muscles with insufficient O2 supply) by my roomie, I am thankful to God and then to her for saving my life. I was swooned afterwards and undergoing various treatments like O2, nebulization and injections repeatedly...

I don't know what happened then & when I revived my senses I found myself half-dead still ongoing spate of treatments. My family arrived near 4 pm I evoked my will-power and didn't heed to anyone , my doc said you are not in condition to go ,I insisted but I got breathless again and was brought to another hospital the same evening .... It was a severe jerk that I wasn't able to get up for approx. a 'month' but thanks to some good medical attention & I took my rehab seriously, brought myself to the level of fitness... It was spring and undoubtedly in these 12 years this "Crop-cutting" season aggravates my symptoms. During this turmoil I've written a poem "My scattered breath" that justify how my condition fully cox when you can't breathe nothing else matters!

              

            “My Scattered Breath"

        Night prevails to bring some rest...

        Even the birds flew to their nest...

       To sleep soundly is my quest...

       But being valetudinarian I am arrest...

       Spring's brutal to me ever, yet!

       Can't blame the crops that harvest...

       Once again I'll have to pass it like a test...

        Cox having "PH" is not a jest...

         Lots of fears, if it’s last spring lest!

          Dear lord! Waiting for you to manifest...

          The eternal heal that reveal the zest!

 My focus is to keep myself psychologically healthy. My parents have always told me that you are "RARE" not "SPECIAL" so my "expectation level" for care and affection from others is very low .......I cordially thanks my caregivers and try to return something to them (that can be a smile :)). I think when we are ill we can waste too much energy being mad or being glad about how people are caring for us, when we should be really there caring for others, our illness doesn't exempt from reaching out in fact, I think we are more accountable because we can understand journey better than those who have not yet taken it. I feel like now that I have PH I am aware of every my single breath to thank.  Never in my entire life anyone sympathized me because I never painted a sorry picture of mine and I feel that’s my success . Everyone and I mean each and everyone says this " You don't look like a patient " until unless I tell them that there is something wrong inside , my nails and lips give them a ill bit of clue rarely but I often hide it with some lip and nail colors..

                                                 

One thing for newly diagnosed patients with PH or any other chronic disease... Look! You are a higher, plight till last breathe, yes you are bearing up, but who isn't? In one way or other everyone is the part of any struggle. Never ever give up & keep marching forward. Everyone has to go one day, take your medication & rehab-process seriously, smile for your love ones and get out of dismal outlook and prove the world that you are a "WARRIOR”. Once you adopt things turn easy for you, HAVE A COMPLETE FAITH IN GOD. Keep your mind spiritually positive & patiently wait HE is the best healer, you all definitely be rewarded for this pain. He is aware of your struggle and the midnight sky and the silent stars have been witness of your devotion to freedom and of your heroism.

I Am Not My Disease!

By Kiara Tatum

Kiara and niece being silly

I was reading a youth worker journal article, and the topic was identity.  I haven’t seen it yet, but the article was referring to the movie, “Fault in Our Stars.” The movie follows the growing friendship of Hazel, who is diagnosed with cancer, who meets Augustus, also diagnosed with cancer, at a support group meeting.  Augustus asks Hazel, “So what’s your story?”  She proceeds to tell him about when she was diagnose with her cancer.  But he interrupts her and says, “No, not your cancer story, but your real story.” 

That statement made me think about how I defined myself since diagnosed with PH eight years ago.  I was someone before I was sick, and I built friendships, had hobbies, and participated in activities that didn’t revolve around PH.  Sometimes we are so focused on our PH diagnosis and that PH journey that we forget that we are much more than that.  How I identify myself is important when sharing my story with others.  Do I start with I was diagnosed with PH in March 2006 after years of knowing that something was wrong with me.  Or do I start with: My name is Kiara, and I like to be silly and have fun.  I love to watch the ID Channel, sing songs out of nowhere, laugh and smile a lot.  I love the Lord because He loves me and He has brought me through such hard times such as these that I want to show that love to others, so they too will know who the Lord is through my actions which is easier said than done. 

So you see I’m more than just a girl diagnosed with PH at the age of 26 who had to leave her job because she wasn’t able to continue to work.  I’m more than that, and so are you.  You are more than a diagnosis that your doctor gave you, and you are more than this disease that wants to destroy every part of you.  We are PHighters, we are survivors, we are warriors, and we are strong.  And we should not let ourselves be defined by our disease any more. 

I love to listen to music from alternative to country to pop to r&b; I love to laugh and smile; I love to spend time with my family; I’m an aunt, I’m a sister, and I’m a daughter.  I sometimes get mad for no other reason than I woke up that way and will probably stay that way for a few hours; don’t take it personal.  I’m terrified of spiders, and I love to work with youth.  So that’s a little bit about me. So what’s your story? Not your PH story, but your real story?