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.

Advertisements
Posted in 2019, chronic illness, God, My Journey, My Life, poem, Poetry, Pray, Sickle Cell Anemia, Sickle Cell Awareness

Let Me Go

Let me Go
I just want to be free
To get some rest.
To just live my life
I’m tired of hurting.
I’m tired of the pain
Waking me up in
The middle of the night
Making it hard to move
I’m Praying to God
And hoping
I’m not going into crisis.
I don’t have time to be
Down in my body
Just let me be.
I got things to do.
Weather doing its thing
Bringing me down
All I want to be is free

4.17.19

~PJ~

Day 17. Living with sickle cell is no joke. I haven’t been feeling my best lately and wanted to share a poem dedicated to my illness. 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 2019, Cancer, family, God, My Journey, My Life, Sickle Cell Anemia, Update

Update

Good Morning and Welcome back to my world. Finally made it to my sickle cell doctor and must say glad be back on some of my meds. So far my sleep is blah. I done got out of bed, so many times. Either use restroom or something to drink. I done fold clothes up, played a few games on my phone. Why Am I Up? I need sleep, like right now. Guess I took my sleep meds late and body is like oh no we ain’t with that. Sighs. Tossing and turning and dealing with pain.

As some of yall may know if you been with me for a while. My dad has cancer. Well, he had to have surgery back in November because one wasn’t shrinking. It was getting bigger. The surgery went well. Thank God. He went for a scan last week to see how the others are doing since starting treatment again. They shrinking but two of them. The doctor wants to go in and remove them. My dad was like like let me think about it. In other words, pray about it and talk to the wife about it. You know God is good all the time. No matter what you going through. I can’t imagine not having my dad. When we find out a few years ago. It was shocking. We could have lost him. I thank God for that doctor appointment after Christmas. His counts were low. We knew something was wrong, but never in million years, we think it was cancer. We had to literally tell him to go to the hospital. He needed blood because he was losing it, and to see what was going on. His primary was like it maybe its cancer or an ulcer.

My nephew just celebrated his 9 birthday these past weekend. They grow up so fast. Where has the time gone? He celebrated his bday at the bowling alley. Second year in a row. No bowling, he chooses the arcade and lazor tag.

Posted in 2018, My Life, poem, Poetic, Poetry, Sickle Cell Anemia

Fall

how you just swept in and blew us away.

I mean the calendar said September you would

arrive.

I must say, I wasn’t prepared but truly did enjoy it

I get to pull my long sleeves out

dress up my tank top with a jean jacket

to keep me warm and safe.

My body may not agree with my words,

but I can’t help myself.

Fall

you done, did it?

Michael didn’t have anything on you.

Heart goes out to the ones that are suffering.

But Fall,

you brought the windy weather

And turn my world upside down.

Fall

Has finally arrive

10/8/18

~PJ~

Posted in Uncategorized

Living With Sickle Cell Disease

Hey and welcome to my world. As of lately, I haven’t been feeling good. I couldn’t use my right hand to do much of anything. Feeling a little better today. I had to make E.R trip Sunday because I was hurting so bad and right hand is and was swollen. I had to debate with myself if I wanted to go. The crisis started late Saturday night, I knew I didn’t want to go that night and be stuck with a lozy doctor with no bedside manners. I know I shared some of my experience with you all in the past. I was worry I would have the same problem as Sunday rolled around. I finally made up my mind go before it got worse. The wait was prob over an hour it was a busy day. Got triage out the way. I did t like the doctor who name was on my band. He was the same doctor that gave me med I’m an allergy to and can kill me. The doctor never wants to listen to the patient. I got a woman doctor who I had when been admitted on the floor. She now works in E.R. Before go into more information on my experience. I have bn going cold turkey without my pain meds. Haven’t had it since June but did have E.R visit last month. So I made sure let her know that. She wanted to just give me fluids and oxygen see if that helps. Red flag, if I could handle my pain at home I wouldn’t be made E.R visit. So I was in pain for over an hour before got med. Thankful counts were looking oh do good, but at the same time I know just because of counts show good report doesn’t mean anything. She was like what should we do. She caught me off guard with that question. I have never got asked that question from a doctor at that hospital. I was like is she pulling my finger she can’t be serious. She was like we going to give you some meds so you can think about it. She even asks what I take. I’m like yea this got me a joke. But she was serious. I decided to go home because I could go to my sickle cell doctor and pick up my prescription. She gave me a look because she knew I was in pain still. And sometimes I do end up returning back to E.R. she gave me three bags of fluids before she discharged me. Sometimes you have been strong when you don’t want to be. Don’t get me wrong I was getting frustrated because of my pain. I wanted to cry and scream but I know to do all that would make it worse. I did have some good nurses that night. And woman got my port on the first try, when I went last month, they had a hard time. I had request a nurse who never miss doing my port. When you hurting, you don’t want to hurt even more. I did pick up on the doctor I don’t like voice and was glad I didn’t have a deal with him. God is good all the time. I did get a chance to see my favorite doctor who got me last time. I wasn’t on his side and he was like she is good. He always let me know what’s up with nurses and doctors. I can talk to him like a friend. Both hospital visits were not so bad. I have started taking my Endari meds again, so I’m taking that’s helping with my counts. My retic was high. I usually get sick and have been admitted in October. Still not 100 percent. I have post and blog when I’m feeling ok to pick up. My hand is still swollen, it’s going all the way up to my shoulder blade, to be honest. I pray all is well with each and every one of you all who read my post. And thank you for the prayers, I can never have enough. God Bless.

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 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:)