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, 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 2019, AWARENESS, chronic illness, God, My Journey, My Life, Sickle Cell Anemia, Sickle Cell Awareness, Update

Living With Sickle Cell Anemia

Good Morning and Welcome to My World. It’s been a while since I posted about my illness. I’m trying to do better. Today isn’t a good day. Not feeling my best. I don’t know if it’s the rain or the season change that got me hurting. Usually, I tend to go in crisis around this time every year. I have been avoiding going to the ER. I may need to put my big girl undies on and go and get check out. I had a doctor’s appointment last week. I didn’t really get blood work done and wasn’t feeling my best then. They were more concern on a check-up from the last visit when I got admitted for 8 days. And make sure my kidneys are good. No news is good news, right? She would have called me and let me know what’s what so I’m glad they are ok. Last time I went to ER let’s just say the woman nurse practitioner was an idiot. My counts were in the 7s so she going tell me I wasn’t in a crisis and was going to discharge me. I look at her and said fine. Just cause my counts shows and looks like that don’t mean anything. Let’s just say I stayed in a crisis for two whole weeks. I made sure to call sickle cell clinic to let them know what was going on and for my pain meds. I tend to go without them but when pain is bad I let them know. She wasn’t happy about the woman saying I wasn’t in crisis. The month of July did a number on me so I was trying to go cold turkey. I don’t see doctors till next year. I’m hoping I don’t need them till then. God has been good to me even on the days when in fed up with the pain. I’m thankful. I’m also thankful for y’all sticking with me, as well as the new people who have to join my journey. Bare with me, haven’t forgotten about y’all. I did read a few posts a few days ago. It’s going to take longer when I’m taking meds for my pain. Until next time. Pray all is well with each and every one. God Bless

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.