Category: Sickle Cell Anemia

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

Update

Posted on by poeticjourney

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, Health, My Journey, My Life, my story, Sickle Cell Anemia, Sickle Cell Awareness, sickle cell disease, Update

Update

Posted on by poeticjourney
Another Update!!!!

Hello and Welcome to my world once again. It’s been a while and a lot has been going on. I don’t know where to start but I have been in and out of hospital almost every week. They weren’t listening to me. But I believe I’m on the right track now. I do have a check-up coming on in a few days. I truly had some good doctors that took the time to listen to me. Listen so good they made sure I was seen this week. It’s a blessing when God put the right people in your care. This month has been rough for me. I know for a fact, I’m not ready to stop living. So it’s time to fight.

Sickle Cell Update…

I have been having trouble with my heart rate getting high for no reason. Then my blood pressure got high as heck. 175/100. I was going thru it, to be honest. I wasn’t stressed The only time I would stress is if certain people would call with nonsense about stuff I can’t do anything about it because I’m sick. It’s crazy how they want to bother you when you are down? Anyways my counts ended up dropping and had to have blood. Just thankful it didn’t take me long like a month or two ago when dropping to 5.4. God knows how to slow you down. I truly have lost my way. My faith has been shaken. I’m working on finding myself again. Meaning spiritual and emotional and physical. I’m ready to start living again. I know the last visit I had started blogging and sharing more. But it was hard to focus thru pain and meds so gave up. I may share them still but as of now not sure about them. Going to cut the post here because tomorrow is doctor appointment and hoping to share more. I pray everyone us well and safe. God Bless

Please forgive me for the visits. Let me get myself together and I catch up soon.

Posted in 2022, My Journey, My Life, my story, pain, Sickle Cell Anemia, Sickle Cell Awareness, sickle cell disease

Day 1, Living With Sickle Cell Anemia

Posted on by poeticjourney
Day 1, Living With Sickle Cell Anemia

Hello, and Welcome to my World. As some of you may know that’s been following me for a while, the title lets y’all know I’m in the hospital. I made sure to stay this time. I’m not going to keep running back up here. My counts still holding their own. My EKG and x-rays were okay.  They even decided to give me covid and flu test. It was a slow process but once they got me to the back things ran somewhat smoothly. I had a doctor from last time that I said was good to me. Hella a week. Me trying to fight thru it all. Pretend like everything is alright when all u want is to die on the inside. My counts have dropped from 8.7 to 7.4. This post was supposed to go up last night. I couldn’t keep my eyes open due to the meds. So until next time. God Bless

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

Posted on by poeticjourney
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, chronic illness, My Journey, My Life, Sickle Cell Anemia, Sickle Cell Awareness, sickle cell disease

Living With Sickle Cell Anemia

Posted on by poeticjourney
End of Month

Today isn’t a good day. I have terrible chest pain and awful back pain. I’m at their E R waiting to be a call to the back. Seems I came at the wrong time since it’s hella busy. I have been triaged and they did EKG and took an x-ray of my chest. It’s a process and hates it. Still waiting for bed so I can be seen by a doctor. Praying I have a good one. I’m still waiting to be seen and I came in with chest pain. It’s almost 8 hours without being seen. I’m already annoyed to see people going back and arriving before them. It’s the bullshit that’s pissing me off. They say no beds but people are coming out and they sending people to the back. I may go home and suffer there, it’s disgusting and disrespectful to put others before me. Until next time, stay Bless..

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

Update

Posted on by poeticjourney
January update (2021)

Hello and Welcome to My World, thank you for the follows and likes. I know I have been slipping with my post and visiting. I’m trying y’all. I was sick a few weeks ago and so many times I wanted to pick my phone up and blog. Half the time I couldn’t even focus because of pain and meds. I do want y’all to see the good and bad side of my illness. But when I’m hurting so bad and sick they were staying on top of my pain. It started to get worse once they couldn’t find my blood type. Well not find it, it was stuck up in VA because of the snowstorm. My counts got low as 5.4. It’s a blessing they find blood in my state. Let me say this if you can donate blood, please do so. You are saving someone’s life. I understand if you can’t because of illness or whatever it may be. Anywho back to what I was saying. I had gone in because of chest pain and other areas hurting.  Never thought they going to keep me and I be in here damn near two weeks. They started looking for my blood soon as I got in to be on the safe side because I have antibodies and so I would have to wait and looked still had a wait. I was happy with my mom was able to visit because it would’ve been my ole man and they weren’t letting people visit months ago. She said I couldn’t understand you because the meds had me out of it. I have a praying mother, I was at peace because I knew everything was going to be alright. God had me. I was hooked up to heart monitors and this and that. That should’ve told me I was sick. It’s crazy how you think it’s something minor and ends up major. I had some good nurses and some nurses I wanted to smack because she didn’t know her job. It seem like every time I would move to go to the bathroom my port needle would come out. One time did it when I wasn’t plugged into anything. The next time it did it was when I was getting blood and messing my favorite gown up. I’m not used to needles coming out my port. It let me know whoever did it, didn’t do a good job. The nurse panicking and freaking out was making my anxiety go up. She was acting crazy than I was when it was happening to me. It’s when she lost her mind and want to yell and had clear my throat and give her a look.  Don’t do me know well get out of pocket when I’m sick. At end of the shift she didn’t listen to me about my ankles swelling and told the next nurse she says there swelling but threw not. Guess what my ankles swell a lot. I know my body.  I am thankful I didn’t get her again. I’m glad to be out but must admit not feeling my best. Was glad to have a doc appointment today. My heart rate has been high as 131 or even higher. Usually, go to ER, next thing I know I’m put in. It was all high today and so was my blood pressure, she had to retake it after I left. I didn’t want to get admitted over there, I will be too far from home and my mom is sick with covid and can’t come to see me even if I was close.  She gave me the flu swab negative and darn covid test, that be negative as well. I have wait two days because they were out of the rapid test. I have to get an x-ray tomorrow on my chest and hip. I bn dealing with back pain and when I got up my hipshot pain all way up and I was limping. I didn’t think it had been almost ten years. I’m still having some pain in my chest and back. We checking to make sure it’s not pneumonia. I didn’t want to be touched anymore today because I was hurting already. Hopefully tomorrow I will be up to another update because this is a long post. I’m going to get myself some rest until next time stay blessed and warm and safe. God bless

Posted in 2021, AWARENESS, Cancer, chronic illness, God, My Journey, my story, Sickle Cell Anemia, Sickle Cell Awareness

Living With Sickle Cell Anemia

Posted on by poeticjourney
Sickle Cell Warrior

Good Morning/Evening, I havent been feeling well for the past few days. I take it change of season. Some days I dont want to get out of bed, but hell who doesn’t have them days? On other days I just push through it and pray about it. Thats all I can do at times. I really do miss my dad. He would know what to say right now. Its another month and usually I get sick in October. But lately I been getting sick like every other month. I need to return to keto to be honest, it really helped me out . Have you every realize when you change your eating habit for the best, your body does so much better. I have slipped after losing my dad. But I must admit I’m not ready to leave this world just yet. So its time to get back on track. Another day in pain paradise. Not funny, but had to say it. When it comes to Covid, I make sure I dont go out if I dont have to. And I always wear a mask when I do step out, I care santizer and wipes. I dont do gloves because some stuff Im allergy to and same with diff mask as well. Its weird you never know what you allergy to until you stuck with having to have it around you or in your life constantly. I know I mention awhile back. I havent got the shot and I don’t plan on getting it. Im always careful and to be honestly I dont like been around people to be frank. Im more of a home body and I keep to myself. With this virus thrown at us it make us realize a few things. We tend to forget who and whats important to us. We have the opportunity to spend time with our love one’s. Thats a sore subject for me to be honest still. I still want more time to be with my dad. Covid didnt take him, the damn cancer rob him and us who love him. I always figure I would leave before him, but look I’m still here and his gone. Just thinking about it hurt

Posted in 2021, chronic illness, Health, My Journey, My Life, Sickle Cell Anemia, Sickle Cell Awareness

Living With Sickle Cell Anemia

Posted on by poeticjourney
Fighting every day Just Live..

Good Morning/Afternoon/Evening, Thank you for welcoming me back and kind words. I truly can never have enough prayers and blessings. I may not be feeling my best nowadays but truly thankful to be above ground. I truly hate summertime, it takes a toll on me. Doesn’t matter if you drink plenty of fluids or not. Go outdoor seem you sweat it all out, to be honest. I have started walking again but taking it slow. And not every day due to weather and me not feeling my best. I have to admit walking does me good. Help clears my mind and just relax. I try to medicate beforehand or either after if I need it. What do y’all do to relax or just get your day started? Don’t get me wrong writing it truly helps specially when I’m on verge of snapping or blowing up. But walking omg, with music playing in my ear. Just another level for me. Going to relax and hopefully pain gets better. Hope and oray each and everyone of you are enjoying y’all weekend. God Bless

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

Life Update

Posted on by poeticjourney
MISSED YALL!!!

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

Posted on by poeticjourney

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