Posted in 2019, chronic illness, fight, Health, My Journey, My Life, poem, Poetry, Sickle Cell Anemia

Join My Fight

Trying to make you mine
Want you on my team
I need justices
Are you going to help me
I’m trying to live my life
But nobody seems to want
Help me
We need justices
The systems not for us
All I’m doing is, trying to live my life
So my question
Are you going to help me
Too many dying at home
Cause we not been treated right
When we come in
I need you on my team
I want to live.
You my choice
Please don’t let me down
I want to live
I heard you the one
That fight for us
I want to live
Can you be on my team

4.19.19

~PJ~
Day 22. It’s been a while since I did update on some of the stuff we, meaning other sickle cell patients go thru. It breaks my heart, read some of the treatment others get. Since changing my diet, my treatment has changed. It has got better, but at times I worry if I get the proper care I need when I go into E.R. anywho another story for a separate post. Just in case you wondering this poem goes with my life.

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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, 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, chronic illness, Health, My Journey, My Life, Sickle Cell Anemia, Sickle Cell Awareness

Living With Sickle Cell Anemia

Hello and Welcome to my world. Today isn’t a good day. In a lot of pain and hurts to walk. I was hoping I wouldn’t have to make ER visit, but the pain has got the best of me. Make it hard for me to walk. Got to the point when I did get out bed, pain shot up and had to wait to it calm down some. After debating with myself I decided to go. Maybe with the help of my parents telling me to go before getting worse. Finally got dress, that took almost 25 mins since I was hurting. I had a long wait. I was praying wouldn’t be full, but that wasn’t the case. The pain was getting worse while I waited. Think about 2.5 hours or more before they call me to the back. I was glad to get on the back side where I knew to get better care. I had Richard who’s my favorite and know how to take care of sickle cell patient. I had a woman in register said she misses me because she used to see me so much. I thought that was funny, and told her I switch my eating habit and that has helped a lot. With the cold weather, we having made it hard to stay from hurting. I had good nurses. It truly helps when you have a good team helping take care of you. My counts want the best, and the retic count was high as well. I had three does before I was discharged. I knew I wasn’t 100 percent but didn’t want to be admitted. But the body was still hurting but did help to sleep majority the next day. I wasn’t getting much rest. As of today, it’s bn a week and day since her visit. I’m still not my best. I’m doing everything to keep calm and rest as much as possible. I refuse to go back, but if I have to go back. I might its been a while since I been admitted. Almost a year come in May. Living with this illness take a toll on the body and the person but as well as the family. Until next time hope everyone staying warm. 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 2019, God, Health, My Journey, My Life, Sickle Cell Anemia

Living With Sickle Cell Anemia

Hey and welcome to my world. It’s been a while since I wrote anything about my disease. Every since new year came in I have been hurting and dealing with a minor crisis. I have made two e.r visits. The first one I should have stayed but I felt like I was better but let me tell you it was all in my head because I got worse but refuse to go right back. When you been thru hell with medical staff people you choose to go home then being judge from people who don’t know your illness. I ended up going back Sunday and counts had come back up but was still hurting. A different doctor that day and since counts look better they wouldn’t admit me. So I had tough it out at home.

I haven’t seen my sickle cell doc since September and ended up losing my primary doc because she moved back home. Without primary doc, you can’t get in to see a specialist without a referral. So I have been without my meds since November. I must admit I don’t miss taking them, but I know my folic acid is a must have for me. To help me stay healthy. You don’t realize how much you so dependent on meds, like my sleep meds. I haven’t been sleeping lately. I hate the pain meds they have me on, makes me itch and let me tell u I hate scratching. The E.R did a number on me. I have so many fresh scratch marks on me from a week ago. Nope, they haven’t healed yet. I have been taking over counter meds to help with minor pain. I finally find a new primary doc and hope meet her next month. My blood doc got me in to see my sickle cell doc next month on 4, so I’m happy about that. It’s odd how I can see cancer/hematology doc without a referral. So thankful for him. Also get labs and result on the same day. My count has dropped once again. Guess that’s why I been cold so much lately and hurting. Winter is heck on my body. All I want is feel normal without pain, but I wouldn’t wish my illness on anyone. It amazes me how many nurse and docs have compassion and the ones who don’t. Are we allowing frustration of someone we once love to destroy the compassion we have as human beings?

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 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;)