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
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.
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.
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.
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
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
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
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
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
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
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
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
A new poem dedicated to My Love Journey and emotions. Do enjoy an der me know what you think. God Bless
As you all know well the one’s that have been with me for a few years now. I haven’t shared much about myself besides my illness, God and few other things. I figure it would be a good thing to sort of introduce myself to you all.
I’m a bookworm and hope to one day to own my own personal library or either a bookstore. ( I have read Harry Potter 6 times each, yes all 7 of the books.
I love to shop. Clothes, shoes, even socks.
Spring is my favorite season. I’m a spring baby.
I’m a Gemini.
I’m the only girl, and the oldest.
I’m a homebody to the fullest.
I love to play Call Of Duty on Ps4. I’m surprise at how much I come up with while playing. A way for me to relax and clear mind.
I love watching Christmas and the movies..
I love watching NCIS, NCIS Las Angeles, finally getting into New Orleans one.
I have seen Harry Potter so many times, I couldn’t even give you the exact number. My favorite is the third one Harry Potter and the Prisoner Of Azkaban
Tell a story
Some may think
Im not Feenin
For nomore pain
Tells a story
Of me fighting
Sickle Cell Disease
Is not yours
God gave me
To share it and hopefully
Educate the World
On my illness
Tells a story
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.
Wow, I been here for seven long years a few breaks here and there. I started my blog when I was in college and wasn’t sure what put on my blog. With help of a lovely male nurse. He gave me the idea to spread awareness about my illness. I thought about blogging about my degree and what made me go that route. After going in and out of the hospital in my early 20’s I knew the world needed to hear my story. I never thought people would actually be moved by my story dealing with sickle cell. Hell, I didn’t think anyone would care to be honest. So many times we tend to keep our demons to ourselves because we scared what others may think because they don’t understand the struggle. I see i have made the right place by making WordPress my home to share my story and so forth. So thank you to each and everyone of you for making me feel welcome and joining my journey. Many Blessings. 🙂
Good Evening, I decided to make E.R visited yesterday since the pain wasn’t letting up. My mom actually pushes me to go, so they could give me some fluids and oxygen. Let me tell you I was thankful the doctor I like was working. He actually knows a lot about my illness so that’s a plus. My counts weren’t too bad was in middle 8’s, with an 11 for the retic, which let me know why I was hurting the way I was. With two doses of meds, my pain wasn’t moving. I didn’t catch it in time and that’s nobody fault but mine. I have been resting every since I got on the floor, let me just say probably slept 5 or 10 mins be honest. I can’t rest like I want when I’m hurting. I have been having chest pains on and off over the past week. So he made sure to do an x-ray to make sure I didn’t have an acute chest. I’m hoping and praying these a short stay. I have a nice doctor, she had to change my orders how often I get meds before seen me. That meant so much to me. She took the time out to read my orders and what was done last time I was admitted. I got some good nurses as well. Loving with these disease has taught me a lot. Taught me how to pick up on signs and what not to do when it’s already too late. I was getting upset with myself yesterday cause nothing was touching the pain. I thought I was doing everything right, but it doesn’t matter if you do what need be done. It comes with vengeance over of body. Sorry cut these short, but I’m getting tired hopefully I can get some rest. Truly means a lot if Y’all can keep me in your prayers and thoughts. Until next time, pray every one of you all is well. God Bless