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, 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, Cancer, chronic illness, Death, emotions, God, Mini Update, pain

Mini Update

Good Morning and Welcome to My World!!  I don’t know if I’ll return to blogging. My world has come crashing down on me.  I know it’s best to write then let it all build up on me before I explode. I lost my ole man on 6, cancer took him from me. I’m actually doing stuff to not think of him not bn here. But it’s hard when he was my hero. I finally wrote last night and it broke my heart. I know he in a better place but I just want him here with me. I did get a chance to tell him I love him the night before. He didn’t say it back he was hurting so bad. Omg to see him suffering was heartbreaking. I wish I could rewind time back to when he was healthy and strong. I know we’re not suppose to question God, but I wasn’t ready to let him go.  I knew deep down I was going loss him, but not so soon. I think I’m going end post here. It’s breaking my heart. I do pray all is well with each and everyone of you all. God Bless

Posted in 2020, chronic illness, Health, life, My Journey, My Life, Sickle Cell Anemia

Day 3, Living With Sickle Cell

Hello and Welcome back to my world. I’m still here and hoping to go home tomorrow. Thankful my counts are coming up on its own. I said counts were 7.7, I meant it was 7.2 and now counts are at 7.7. I’m still having a good doctor on my team. My pain isn’t as bad as it was when I came in so I’m thankful for that. My legs hurting but they starting to ease some. I’m looking into new meds for my illness. Waiting hears back from them. My nurse practitioner told me about it a few weeks ago. It was either the pill one or the iv one once a month and had to drive so that was out the question. I have the doctors asking me about taking the cancer meds again. But I’m good. Some doctors dont know its more meds out there for my illness. Be doing another post about the. We meds. Waiting to see if my insurance approves it. Until next time. God Bless

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

Day 2, Living With Sickle Cell

Hello and Welcome back to my journey. Another long day here. Last night was rough, i was hurting all night. Shortage on IV meds. IV meds are what needed to get the pain under control. I have a good team of doctors. Nurses can’t really say right now. My counts drop 7.7 overnight, so they have come and taken more blood for cross and type if i need blood. Let’s pray I don’t need. I have started reading again on my kindle to take my mind off my pain. Feels good getting back into reading and visiting blogs. I’m behind on my poetry for the month. I’m ready to go home, can you believe that. I’m not as bad as when i came in so that’s a good thing. But im, not 100% either. I’m starting to get tired of fighting. My body is in overload. I really don’t have much to say. Pray all is well with each and every one of you all. Blessings

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

Day 1, Living With Sickle Cell

Hey and Welcome to my world. It’s been a while since I did one of these posts and let me tell you. Yes, I have been in hospital. I had started working on the update just last night. I started hurting Friday afternoon but had stuff to do like washing and folding and grocery shopping. Your probably thinking health before all that. Maybe so, but I’m hard-headed and tired of going back to the ER every other week. Anywho I took a shower and meds and laid down for the night. Next day pain was still there but not as bad as the night before. It had moved to my back and leg but by night the pain had a return and was getting worse. So another shower and meds and laid it down for the night and watch some television to help relax and put me sleep. Throughout the night I notice I was getting pain around my ribs and would rub them and go back to sleep. Come morning I thought the pain was gone till I got up to go the restroom. It was more intense and rubbing wasn’t working. Another shower and meds with breakfast of course and a phone call to my mom to let her know. She was like maybe it’s gas since had lettuce in my taco last night. I tried drinking sprite and burp a few times. I gave it a few hours and pain was still there to the ER and I wasn’t happy about that. The set up is different since COVID 19. I take it they have different precautions in each of y’all areas. Two nurses in front of the entrance. I told them what was going on and she told me which window and where to go and wait till the name is called. Took almost an hour just get in the back to be in triage, but had to wait to get pull in back for a room. Had a nurse hadn’t had before and she didn’t want to really listen to me about my port. If it wasn’t for another nurse in the room. I don’t want to even think about it. My counts are good for now. My retic at 10.5, which isn’t good. It’s a sign letting me know I’m in crisis. I had a good nurse practitioner that I did have before. I’m thankful for her and how quickly she moves to get me comfortable and admitted. It’s going be a long night, they have me on meds by mouth. The IV dose was 1mg and that’s not what i take. Since the COVID crisis seems they have to be careful with IV meds on the floor but not ER. We shall see how this goes. Until tomorrow I pray all is well with each and every one of you all. Stay safe and inside. Blessings