Posted in 2022, AWARENESS, chronic illness, Death, Health, life, My Journey, My Life, Sickle Cell Anemia, sickle cell disease, Update

Update

Good Moning, It’s been a while since I posted. I do pray all is well with every one of you and thanks for joining me and sticking with me thru my silence. I have been struggling since losing my ole man (dad) and my illness hasn’t been the best. I have been out and in about every month and sometimes twice in some months. I must admit surprised I haven’t given up yet. I have been writing a little here and there. I have been thinking about coming back and every time I do I never know how to start my post. seems every time I say I’m coming back it’s an update and then something happens. Life is funny like that, to be honest. The last hospital visit was a week and two days. it’s funny because I was doing good without going to the hospital or been putting in. My third month showed me doesn’t matter how you take care of yourself. Sickle Cell wins. I can take meds and do stuff like I’m supposed and still it wrecks my life without remorse. I haven’t had the chance to take my trip since June which was for my bday month before. I suppose life is funny that way. Covid doesn’t help much either. I must say I’m glad I haven’t and pray I never get it. My thoughts or everywhere. I do pray all is well with every one of you. As of right now the doctors and I or working on a way that I can stay put in the hospital. I have a home nurse that will come out to see me if I need her. It’s crazy how life slows you down when all you want to do is run away and don’t look back. It’s a holiday and my ole man’s birthday is this month. Lord, I miss him so damn much. It still feels fresh and it’ll be three years on the worse month possible. A hint: I hate Father’s Day, hell the whole damn month. Grief is a hella pain. The memories aren’t the same. I can’t hug a memory. I can’t pick up the phone and call just to hear their voice one more time. At this moment, not feeling my best. the weather is getting cold so that could be the reason. I and my body have a love and hate for it.

Questions for ya’ll. How do ya’ll handle grief? I havent fully grieve because of making myself sick. I grieve a little each time im in my hospital. Might as well since Im already sick. I honestly dont want to hear its going to get better. I dont beliee that. I have some people who lost there father longer then I have and they still grieving. Do let me know what ya’ll have done to make it little easier. Many Blessings till next time. I pray its not months later.

Posted in 2022, Mini Update, My Journey, My Life, pain, Sickle Cell Anemia, Sickle Cell Awareness, sickle cell disease

Another Day Living With Sickle Cell Anemia

Hospital/ER update

Good Morning, what a night, it was a hella painful night. I didn’t get a call from the back after 11. I honestly was getting ready to walk out. Once got back things were running smoothly. Had a nice doc and they got one nurse they get my port every time now. My main concern was chest pain. X-ray and EKG look good but did find out have cars on my lungs. Learn something new and she said I even went back and look at other X-rays and showed the same thing. But she was the first and only doc me. If u wondering if I stay or go home. I’m home, maybe should’ve stayed the hospital is full and I would’ve bn in ER area for a while. My left arm hurts to lift, and so is my hip. So walking man slowly. I hate moving to be honest. Seem my chest pain is coming back now. May have gone back and let them keep me. Until next time. Oh if u wondering when got discharged it was around 8 that morning. I slept a lot. God Bless

Posted in 2022, God, Listen, My Journey, My Life, Update

New Year

New Year (2022)

It’s been a while since I blog and shared much. I pray everyone made it in 2022 safely. 2021 was a rough year, still struggling with losing my dad. I haven’t been the same since he left last month was rough because of the holidays and his birthday. I must say if you still have your father in your life, do cherish them. I know we have to leave this world one day, but it’s a different hurt when there’s your rock. I had a few hospital visits due to my illness. The majority was good to visit and one wasn’t. I always think it’s funny when they try to tell me about my illness when I leave it for over thirty years. I’m going to try this blogging thing again and try to be consistent. I have been writing a lot lately just getting stuff off my mind/heart. Until next time I pray all is well and God Bless

Posted in 2021, Journey, My Journey, Sickle Cell Anemia, Update

Life Update

Good Morning/Afternoon/Evening. It’s been a while since I posted and must say I missed it and y’all. Every since lost my dad I have been lost and drowning and was so angry.  It’s been a year unfortunately and he still not here with me. All I have left are memories. Thank you all who stuck with me and newcomers. I have been missing writing and visiting y’all. I have been writing here and there, just clear my head. But not on here. It says I have been blogging here for 10 years. Wow, that’s been a long time. Word press truly became home for me.  It has become a place for me to share my journey with my illness. The good and bad. I never thought I would touch so many people live through my experience but I have.  It hasn’t been easy. It hasn’t been easy since my dad been gone. I don’t have him here anymore to pray for me and talk to me and just be here. I haven’t truly grieved so I do it Lil bit every time I’m in the hospital. I thought about blogging each time I’m in but never have the energy to share anymore. Hoping to find my way back to sharing more of my life and read about y’all journey. I pray y’all are well and covid hasn’t got y’all down and out. Do enjoy y’all summer but make sure to drink plenty water. It’s hella hot in south. Pray all is well with each and everyone of y’all. God Bless

Posted in 2020, AWARENESS, chronic illness, My Journey, My Life, my story, Sickle Cell Anemia, Sickle Cell Awareness

My port update

Welcome to my world. I haven’t blog in a while but have been thinking and contemplating on how to share more of my illness and my thoughts on different things. As I was browsing sickle cell Facebook group I came across a patient sharing what used to be my journey going to the hospital with multiple pokes and bruises. I never thought in a million years I would agree to a port. But when you tired of bn a pin cushion and having a rude ass nurse wake you out of your sleep to put a line in. You either go for line or port. I was glad my nurse was in the hallway when it happens. Some nurses or so compassionate and some just there for a check. It’s always a plus when a nurse has an illness just as bad as you and understands our pain as well. It’s funny because my doctor had been trying to get me to get a port for a while. I have always been scared of needles and still is to this day. When dealing with my port sometimes I hold my breath and they have reminded me to breathe. Everyone doesn’t know what they doing when it comes to my port. They don’t like to listen when you tell them what works and what doesn’t. The port has been a life savior for me in more ways than one. I haven’t taken many pictures showing my port, but do have one. My journey is just that (Mine). If you wondering what my port is used for. It’s for getting fluids, blood when I need a transfusion, and for meds of course. I know over the years I spoke about my port and probably when I got it. It’s good and bad with them. Hell, it’s good and bad with everything. I’m not really at my best, so I’ll end my post here. I pray all is well and everyone is staying safe and warm through the holidays. Many Blessings


My port

Posted in 2020, AWARENESS, Health, Mini Update, My Journey, My Life, my story, Sickle Cell Anemia, Sickle Cell Awareness

Blog Update

Good Afternoon, hope everyone is good and well. As things have changed so much. And seen how so many warriors or saying due to the treatment. I have decided to make a Facebook page so I can share my story and others who give me the ok to do so. Soon as I’m done with the page. I didn’t realize how much work just making another page and the naming process. I have come to the conclusion we need to be heard and if doing this and not been quiet about the treatment or care I get. How will we be heard and how will y’all know my journey and understand just what sickle cell is. A change starts with me not been quiet and hurting in silence.

Posted in 2020, AWARENESS, chronic illness, My Life, Sickle Cell Anemia, Sickle Cell Awareness

Lack Of Care

It’s sad how so many of us are dying due to the lack of care/ and knowledge. We’re dying because they don’t want to listen to us and think we faking it and want to be drugged up. I wish I can be normal but that’s, not the case. Im a warrior and in this fight till im call home. It breaks my heart to hear how we are getting treated. Hell, I still hate going to the hospital with all the BS I done went through. It’s getting better, but that nagging fear still in the back of my head. On my last stay, I was blessed with a good doctor who took the time out to hear my voice. I was so shocked it threw me off. I even had a good CNA! We stay in touch to this day. Doctors and nurses need to go back to school and get more educated on what the hell is Sickle Cell is. I hate when they ask how long you have been living with the disease. Im like what the hell. All my life. I done had so many compassionate nurses than doctors and that says a lot. The question is when will they do better by us?. We want to live and not die by their stupidity. From on out ill be doing more on my illness. Im tired of hearing someone died when they could have lived. We shouldn’t have to be scared of going to the hospital. Im is sorry if im everywhere with my post. I just want us to be heard and to show yall what I go through with living with this illness.

Posted in 2020, Death, grieve, My Journey, My Life

How to grieve

Is there appropriate way to grieve for someone you lose? Do you rush someone to move on when they lost there love one? I understand not going into depression over it. We have to pray for them not demand they move on. I had a talk with someone about it and they getting mad cause someone seems to be sleeping there life away. Please don’t tell me you understand when you don’t. Don’t tell me it’s going get better. Don’t tell me you going be there for me and you don’t. Don’t ask me what do I or the family need. I notice when you lose a love one, and after the funeral they calls stop. What happens afterwards when we still grieving and wishing our love ones still here. What happen to the calls the showing of love? Does it all go in vain and was you m lying to them? What happen when we start to struggle and lose our way. Can we call on you when we drowning and our hell and wonder if we ever going get out of it. So many unanswered questions. I’m so thankful for the people who understands where I’m coming get from and don’t sit and lie to me. Who says after so many odd years they still miss them and thinking of them and it doesn’t get any easier. Stop lying to us and saying it’s going to get better. Just be real and let us grieve the way we want. Pray for us and keep reaching out and checking in. Just be a friend or a family. What I come to realize after losing my dad, is family is BS. They like to show there assume and it the worse possible way. If only the person who we grieving the was alive you wouldn’t act the way you act and turn your back on family. When grieving we go though so many emotions. It’s really many steps to grieving.

Question is how do you grieve? Have you ever had anyone tell you to get over it? What do you do when a love one tells you how to grieve ? So many emotions run thru me when people try to tell me how I feel. Do share your thoughts on the matter.

Posted in 2020, God, Heart, life, Life Lessons, Listen, My Life, My Love Journey, poem, Poetic, Pray, queen, Relatonships

Bigger Picture

My heart hurts so bad right now
I done made the biggest mistake
And fallen for a man
Who only thought of me
As a chess piece
The time I needed to be strong
I fail myself
Im standing in the rain
With a broken heart
Im a Queen
In dire need
If you see me walking with
Head hanging down
Please mind your own business
Im dealing with my lost
One after another.
I need to go back to the time things
Was simpler and remember my damn
Place.
God will give it to you

And take it away.
Im dealing with my lost
And having a talk with my master
Let me do this alone.
He never left me when I had it all
And didnt know how to act.
Dealing with heartbreak when
The world going thru pandemic
It seems so trivial.
To worry about a Lil heartbreak.
When God is showing me a bigger
Pic

4.1.20

~PJ~

Hope you enjoy. I have been working on this piece for over a month. Glad to finish it for poetry month. Do let me know what y’all think. God Bless

Posted in 2020, emotions, Love, My Journey, My Love Journey, poem, Poetic, Poetry, Relatonships

I need you

I need you

I need you for reasons you cant imagine
I need you on days I want to throw in the towel
I need you even when you give me hell
I need you
Baby
I need you as much as you need me.
Needing you has become part of me
Hearing your voice reminds me just how much i need you
Healing you
Is what you need
I need you
To be ready to love me
Without your past pulling you in
To be ready break down walls
Baby
I need you
Im needing You
More and more
While needing you
I’m hurting you and us
I need you
On days I’m fighting
To not express how I feel
On days saying enough can get me by
I need you
Understand
I’m struggling on you loving me
And me letting your love heal
What’s so damage
That I’m ashamed of my brokeness
I need you
2.8.9.20

~PJ~

A new poem dedicated to My Love Journey and emotions. Do enjoy an der me know what you think. God Bless