Posted in 2019, AWARENESS, knowledge, word of encouragement

Word Of Encouragment

“If you want to Start being productive, Stop trying to get the right things out of the Wrong people.”

Good Evening, I pray everyone is having a good month. As some may know this is Sickle Cell Awareness Month. I haven’t been feeling my best.

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Posted in AWARENESS, chronic illness, God, Health, Heart, June 19, knowledge, life, My Journey, My Life, Sickle Cell Anemia, Sickle Cell Awareness

World Sickle Cell Awareness Day

Today is Sickle Cell Awareness Day. I know I have mentioned it so many times on my blog and the different things I go through with dealing with this disease. Lately, all I see on Facebook is how they are getting treated. Some of yall may have never heard of the disease. Well, today is the day I explain what it is. If you want to know more keep following me on my journey and google as well. I never thought people would care about what I go through.

Whats sickle cell anemia.
It’s an awful hereditary blood disease. You can be fine one minute and the next you not. Years ago we didn’t see the age of thirty. Wow what a mighty God we serve, some may not see that age today and some are seen age all the way up to there 80s. When in crisis is turns your blood into crescent making it unbelievable to move because of oxygen not reaching that area. Normal blood cells look like doughnuts. Let’s be real for a second this is a dangerous disease it affects all your organs. Since its heredity disease. It can affect all your kids are just one or two. My parent had five of us, only two of us was diagnosed with this disease and the rest trait. They didn’t start testing babies to till the late 80s. For some many years, I was told and so many around us that sickle cell was a black disease, I believe it to join sickle cell groups on facebook. Wow, the many faces behind this evil disease showed me the truth. Since 2008 they have recognized sickle cell as a global public health priority in order to raise awareness to sickle cell. With that been said its still not much awareness. So many people still don’t know what sickle cell is. I hope by joining my journey it opens someone eyes and hearts up.

Posted in 2019, AWARENESS, chronic illness, Health, Heart, Mini Update, My Journey, My Life, Sickle Cell Anemia, Sickle Cell Awareness, Update

Living With Sickle Cell Anemia

Hello, and Welcome back to my world. What a day I had. What I hate about doctor offices is to wait. I did mention had an appointment both days. Let’s just say Monday was a waste of time and gas. They went prepared for my arrival and didn’t want to see me because they didn’t have paperwork from the hospital, which I didn’t understand. You knew about for over two weeks. Always away from that. I arrive on time for both appointments. They did apologize but still, I was not happy. You are my primary doctor so it wouldn’t kill you to finally see me in person. Nope, I see my other doctors more then I see primary. Haven’t even met her yet. Yea something wrong with that pic big time. My sickle cell doctor was the most important for me to see. I had called in the week before explaining to them what had happened when I was in the hospital. I wanted blood work and wanted my results. She set everything up for me. Soon as the appointment was over went next door to the hospital to get labs drawn from my port. So back to my appointment, hadn’t been seen since Feb. She was like you good. I know I haven’t mentioned here before. I have changed my diet. I went keto and it has helped me a lot. Kept me out of the hospital. Lost over 60lbs. When on chemo meds for my sickle cell I had gained weight and couldn’t lose it. Then the new meds for sickle cell. It was making my head and back hurt. And I couldn’t deal so I stopped it. I had to first help myself and I have done just that. I honestly did my research for about 4/5 months before I went for it. I don’t have a gallbladder. Anywho back to my appointment.she check my heart and says sounds good. She asks me about meds she wanted me to start last time for my kidney. Told her I hadn’t started it yet. Since my body is doing overtime then a person without sickle cell. So she changes the mg since I’m smaller and started it last night. Never happy about trying a new medicine. So next visit we will see how everything looking. I’m putting it in God’s hand that everything is good and I won’t have to take it forever. I was glad I didn’t have a long wait for a tech come do my port. She was a nice woman and we talk while she did it. I always like to get to know whoever is dealing with me. I hate for my port get infected. I finally got my result around 5 and no new antibodies praise God. White counts were good. Retic little high but it’s be expected since my counts 7.6. It’s the best but it for sure not the worse. Praise God. Also, find out my bones in my back are deteriorating. It explains a lot when I’m going into crisis. Just a few days ago, I couldn’t move because I was hurting so bad. I read other sickle cell patients having the same problem. But so wasn’t expecting I had it. With so many people dying from my illness. I want to share my illness with y’all. Until next time pray everyone doing good. Stay Bless

Posted in 2014, AWARENESS, chronic illness, fight, Health, My Journey, My Life, poem, Poetry, Sickle Cell Anemia, Sickle Cell Awareness

My Life

How can I speak…

when I’m only one

person…

You seem to look…

at me crazy…

Cause of the pain.

and you don’t understand…

Yes,

I’m one in a million…

So many of us or losing.

the fight…

So thankful for the one.

who fought with me.

You may not hear me…

But I know many hear me.

and join me to fight for ours.

rights.

Do you hear me?

I hate to yell but hell.

my pain is that intense…

NO act.

over here.

We want Justices…

done…

We are tired of been

mistreated.

some die in pain…

because of the abuse from

the ones…

who supposed to help us.

Do that make you all happy?

see so many dying?

~PJ~

Technical I’m not finished with it but wanted to get it up, while I have the time and strength to share. I wanted to share it last month since it was Sickle Cell Awareness Month. But you all know its every day for me… Do enjoy and let me know what you think. The poem says a lot, so many sickle cell warriors have died this year. We don’t have it easy when we go to E.R/hospital. Since so many don’t know what it is or what we go through. We get sent home in pain or mistreated while been in hospital. I know you all have read a few of my post, and know I had could not so good nurses and doctors. I’m praying for a cure for us.

Day 19. Something I wanted to repost again. I can’t believe I didn’t add a date it was written. Do enjoy and God Bless

Posted in 2019, AWARENESS, Death, fight, My Life, poem, Poetic, Poetry, Sickle Cell Anemia, Sickle Cell Awareness

Our Fight

So many dying around us.

Young and old.

Will it ever be a cure.

So many deaths.

I’m tired of reading we lost

Somebody.

Somebody family is hurting

And suffering.

When will our care get better?

She/he fighting for their life.

Sickle cell

Needs a cure

And doctors/nurses who care.

Were tired of getting judge

Just cause you don’t know our pain

And understand our disease

When will y’all do right by us

So many dying

I’m tired of reading we lost

Warriors.

This fight is getting difficult.

Seems nobody cares

So many dying

Young and old

We fighting to live

each and every day.

All we want is just to live

2/10/19
PJ Prim

 

Posted in 2014, 2018, AWARENESS, Death, fight, God, Journey, My Journey, My Life, poem, Poetic, Poetry, Sickle Cell Anemia, Sickle Cell Awareness

Warrior

So many fighting diseases behind
Close doors…
Breaks my heart to hear
So many losing the battle…
You see our smile,
But not know our pain.
Fighting to live.
Holding back tears
So many warriors dying
From sickle cell, lupus, ms, cancer
And so many other diseases…
I never consider myself a warrior
Warriors coming out the closet
And letting the world know
I’m not a shame, my disease isn’t me.
Warriors are the ones,
Who keeps moving when the
The world has turned there back on us…
Warriors
Keep marching to our heavenly
Father call you home.

4/10/14
PJ

Dedicated to so many falling warriors. Quit judging when you don’t know the whole story! God Bless. Feel as if I can add more.

Wanted to share it again for the month of September to bring more awareness to sickle cell since it was sickle cell awareness month. But as many of you may know I try to share it much as possible.

Posted in 2014, AWARENESS, Faith, God, My Journey, My Life, poem, Sickle Cell Anemia, Sickle Cell Awareness, Strength

Against All Odds

I learn to fight
I shed tears, question
Myself if I was meant for
These journey with Warriors
Against All Odds.
God showed me just how..
Strong I was to be Warrior..
He knew what he was doing
When he created me
Against All Odds .
I showed strength, when I wanted
To give up
God showed me love…
In the midst of storm
He showed me I’m nothing
Without him..
Reminded me to hold on to
Faith…
Against All Odds..
4/18/14
PJ

Dedicated to my journey of life. No matter what you going thru his right there in the midst! Don’t stop fighting/ believing in him..No matter my odds, God had everything in control… Not sure if I’m happy with this piece, do let me know what you think 🙂

I’m re sharing poems dedicated to my illness to the end of month since its sickle cell awareness month. I do have new one’s I hope to put up real soon, so do bare with me. If you don’t like rereading different post that’s fine as well. God Bless;)

Posted in 2011, 2018, AWARENESS, fight, God, Health, My Journey, My Life, poem, Poetic, Poetry, Sickle Cell Anemia, Sickle Cell Awareness

Scar

My scars
Tell a story
Some may think
Im addict
Im not Feenin
For drugs
Im Feenin
For nomore pain
My scars
Tells a story
Of me fighting
Sickle Cell Disease
My life
Is not yours
God gave me
This life
To share it and hopefully
Educate the World
On my illness
My scars
Tells a story

12/13/11

PoeticJourney

 

I have shared this poem before and wanted to share it once again. This month is sickle cell awareness month.  With so many of us dying each and every day. I had to the need to share it one more.

 

Posted in 2018, AWARENESS, God, Journey, Mini Update, My Journey, My Life, Sickle Cell Anemia, Sickle Cell Awareness

Living With Sickle Cell Anemia

Hey World,

And welcome to my world. I took a break from writing about my disease because I felt like I was talking about it too much. But honestly its truly not enough information about what I and many others go through on daily basis. September is Sickle Cell Awareness month. With so many dying left and right and it seems like every day makes me wonder what is going on. Why isn’t there much information about what we go through and why does it seem like the doctor and nurses have stopped giving a damn about us? It’s time to better educated new and younger doctors/nurses about sickle cell and stop making it a black disease because that’s not the case. And time spread awareness on sickle cell trait. I got to stop being quiet and start opening my mouth and let the world know what’s going on. I have debated for a few weeks now on coming back and doing what I started. Some may not like my content and that’s fine. On days when pain is so bad, I pray that God calls me home cause it be just that painful and nothing love ones do doctor and nurses help. I recently had E.R visit after going months without having an issue. Sorry, I take that back, I fought it home a few months again. I haven’t been admitted since May before my bday. God is truly good all the time. I’m not sharing my story for pity, I’m sharing my story to spread awareness. The more I stay quiet the less is getting done for the sickle cell community. I do plan on doing an update post on how my experience went with hospital visit and doc appointment. I pray all is well with each and everyone of you all. God Bless

Posted in 2018, AWARENESS, God, Health, My Journey, My Life, Sickle Cell Anemia, Sickle Cell Awareness, Update

Update

Hey and Welcome to my world. It’s been few weeks since I wrote update. Every since then it’s one thing after another. Last month I ended up in hospital three times. Got admitted the last visit. I ended up with flu, due to someone sending they sick child to school and passing it to my niece. Please for the love of God, stop sending sick kids school. The first visit was negative, was running fever of 103. They didn’t keep me but sent me home. Oh yea they wanted to say UTI was the case of my fever and pain. Guess who got worse and had go back. Check for flu, and won it. Seciously I wasn’t please. They didn’t check anythingelse. Couple days later woke up with chest pain. Praying it go away but no can do.I had go back and let me tell y’all I waited four eyes in lobby. They wanted say of her pain from her uti that’s why they didn’t take me serious. I had keep myself calm. It wasn’t busy I arrive lil after 4 in morning. I had to make me way to register just to see why the hold up was. She was like they trying get room. That was lie when so many people was coming in and out. I had let her know I came in with chest pain and back and leg. When you having chest pain they suppose take you to the back. She made call to back and few mins later I’m called back. Guess what? No ekg, x ray, pain meds. Nothing. They tried cAll me back earlier for labs but they know in my file says port since hard to stick. Oh I went back but she miss and she didn’t understand why they wasnt doing port. Got port excess finally after they call me. Labs drawn, order fluids and antibodies. Here they come with tordal. Had wait 3 more hours to I got room. My count had drop more and so retic was high. Only way find out cause tech came to type and cross me. Oh yea when so call nurse practitioner came in she was like we may send you home. I’m like wdf. No ma’am. I was just shock on whole treatment, but you know what I shouldn’t be. That’s how sickle cell patients get treated. It’s bad enough we dying like no tomorrow, because so call doc and nurse practitioner not doing there job. Once on floor still no pain meds. Had keep praying and staying calm because that just how much I was hurting. Finally got meds but pill. Takes pill longer to work. I had been crying and praying. Three hours later my nurse return and says I find you doc that had you before and prescribe me my usual meds. Praise God! She got my meds and doc comes in and I tell him what’s going on and that I didnt get ekg are x ray. He was shock and order ekg asap. I could had acute chest. Thank God no acute chest. They did ekg two days in row and x-ray the next day. I had four day stay. I ended up getting blood, because counts drop. Blood came day earlier and let me tell you I was happy hear it. It was my first hospital stay for 2018. I only had two last year because I truly gave up on medical field. Back in October I was in week and day.

I tried to give hydrea a try again.( if you wonder what hydrea is, its cancer meds but sickle cell patient could take it to lower crisis and hospital visit). I couldn’t do it. I just didn’t like the outcome. It brought my counts up, but I started to have chest pain and I couldn’t take it. It’s my body and I’m the one dealing with outcome. I had mention about chest pain and she was like I never heard not giving people chest pain. Lets just say I did my own research on meds. Had doc appointment today and she mention a new meds just for sickle cell patient. It comes In the mail. I plan on posting about it once I start taking it. I’m praying I didn’t leave anything out. Until next time. God Bless:)