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, chronic illness, Mini Update, My Journey, My Life, Sickle Cell Anemia, Sickle Cell Awareness

Living With Sickle Cell

Good Evening,

I’m still not feeling my best. I decided to go to the ER and got worse care of this year. I already knew it was going be bad soon as the so-called nurse practitioner walks in. Let’s talk about how I had to wait two hours before they decided to do something. Her first mistake was saying your second sickle cell patient I saw today. WDH? What’s going on, wonder do they say that to cancer patients and drug addicts. She then acts like I’m there a lot. I haven’t step inside the hospital since June. If you wonder if I got care, the answer no. Says my counts look good to her and better than last time I came. I’m going to give you some fluids. Let’s just say I got half the bag. I have been resting and hurting ever since my visit to E.R. I wasn’t going back and I stayed true to that. I know it’s not good to be in pain, but I can’t take any more disrespect from a true idiot. I have been resting and trying to get myself better. Crazy the weather has changed and that’s not good for the body. But back to my hospital experience. If you wondering if going to report the answer is yes. I was hurting too badly to do it that night. I have to get my emotions in check when it comes to certain things. I wear my emotions on my face and they could see I was upset and hurt. Probably heard how upset I was when I was talking to my mom. She will not be taking care of me in near future. So that’s a plus. I will make sure to keep y’all updated on that matter. I pray all is well with each and everyone and until next time. God Bless

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

Living With Sickle Cell

Another day in pain and wondering if I should go to the ER. Always worry they going keep me or mistreat me. I get great care once on the floor. It’s a shame I have to worry about this when all I need and want is relief and not to hurt. I’m not asking for judgment. I hate lying to my mom and saying I’m fine when I’m not. I hate having her worry about me. I know if I wait too long it will take a while for my crisis to end. Honestly, I’m just tired of hurting. I pray all is well and if you praying warrior do say a prayer for me. God Bless

Posted in 2020, My Journey, My Life, Self Care

Finding Me

You don’t realize how your peace can get interrupted by people you think you think you need in your life. You can want the best for them and still get a slap in the face because of it. I had to step back and look in from the other side. That person was so miserable that he tried to make me just as bad. I lost myself because I felt like I was alone and I couldn’t breathe. You don’t know how much a person means to you till they are gone. OMG!!! It’s time for me to take care of myself again. Focus on me and better myself. Pray the message speaks to someone heart and soul. God Bless

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, 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. I don’t know if it the weather or the stress. It could be a combination of both. Some days or good and some days are bad. Today is a bad day. We don’t realize the things that send us over the edge. The things that disturb our peace mentally and emotionally. I’m learning to step back and look at what was hurting me. I make Saturday a wash day at my mother’s house. I push myself because I know things have to be done. Right now my back and up to my neck. I hate depending on my meds to help me feel better, I hate hurting even more. I have been doing a lot of resting for the past two days. Taking meds, laying on a heating pad, and of course, taking my meds. Oh, and drinking plenty of fluids and praying. I wish my dad was still here. I always go to him first and ask him to pray for me. I’m going to end the post here and pick up with an update tomorrow. Hope and pray everyone had a good weekend. God Bless

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, AWARENESS, chronic illness, My Journey, My Life, Sickle Cell Anemia, Sickle Cell Awareness, survivor

Life of Sickle Cell Warriorr

I know it’s been a while since I blogged. I have had two hospitals Stays since. The first one was after lost my lost man and they thought had covid but ended up with pneumonia. The question to me is how I got it. Thinking someone at the funeral was sick and should have stayed home. For the ones who have been with me since I started blogging about my illness, you know the shit I have been through. The mistreatment, not wanting to believe my pain because they couldn’t understand or see it. I have a podcast for you to check out. I’m going to school with the young lady they talking to. She is one of the strongest women I know who battle this illness. No matter how strong you are they still try to mistreat you. She gave me the ok to share it. I’m still trying to find my way back to blogging. I think I’m almost there. So bare with me. I’m going to visiting blogs. Thank you to the new followers who join my journey. God Bless each and everyone of you all. https://www.wnpr.org/post/almost-everybody-hurts-exploration-pain

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, Love, Love Journey, My Journey, My Life, poem, Poetry, Relatonships

Toxic Love

Your love is toxic
You so immature
I see why you always getting played.
That toxic love.
Is not for me
Im not about the games.
Go play and run them mind games on simple females.
Im, not the one
Toxic Love
Are you!!!

4.14.20

~PJ~

Usually, my poems are longer but this one was how and what i feel at the time. Do enjoy it and let me know what you think. God Bless