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, 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, 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

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

Update

Hello and Welcome to My World. It’s been a week since I been home from 8-day stay. God is good. I was a worry for a while. Where should I start? Come to find out the accident put me in crisis. Not sure if I mention the ride to my check up on my hip. Let’s just say that ride was hell. My body was so on fire. Let’s just say I was glad I had arrived at the doc office but not really because I had to get an x-ray and I was already hurting. It took prob 10 mins to sign in and sit and wait to be called. I saw a person dress half-naked and I was like hope she doesn’t have sickle cell. We don’t like cold. A lot goes through my mind when I’m hurting while trying not to think of my pain. I got called to let’s just say I was not happy about getting back up and walking again. Finally made it to the back and let’s just say things weren’t going good. Got on the scale and went in a room and did that good stuff. Waited quietly for nurse practitioner and we’ll let’s just say it went to hell. She walks in and was like I have never seen you like this before. Oh, and I didn’t look good. I tried to hide how I was feeling but when you in pain it was hell. So she was like can u get on the table. Let’s just say had said a prayer before got up. And it went straight to hell. I didn’t want to be touch and it turned to move and tears fell. She was like yep never seen you like this going direct admit you. Let’s just say it didn’t go that way because the hospital was full. I was in the hallway in er part for 2 hrs before got meds and let’s just say it was supposed to be iv meds and got the pill. You guess it, it didn’t work. You would think a big hospital with 9 floors would have room. But nope. Anywho our waiting 6hrs in the hall to be admitted. Finally got put on the 5floor and settle in. Guess who hadn’t eaten all day till got in room at 5 or 6? Me. I had some great nurses and doctors. Seem always do when I’m in that hospital. It’s like every few years. I stayed on 5 floors, think maybe 2days. Things started going bad and oxygen was dropping and seem my lungs weren’t looking good. I ended up with acute chest, which can kill us. After I heard that was wrong. Started to panic but just prayed and became calm and call parents to let them know what’s going on. They couldn’t be with me since dad was in the hospital. Hey, I’m grown and actually like been alone. Long as I can call them and hear there voice everything going be ok. I got a move to.9floor pcu. That’s how serious things went and quick. The doctor had asked me have I ever had acute chest and I said yes once. She was like did you have cheat pain. I said no. That was alarm and she did an x-ray and come find out she was right. I had good nurses on 9 floors. They stayed on top of pain, before getting a move to the floor. Meds had got up to iv meds. Actually when sickle cell doctor find out what board said and let the doctor know. Guess she talk to them and things got to change and quick. Been on 9floor and receiving bags and bags of antibodies. Sighs. So wasn’t happy about that. Let me be real, it had been months since had pain meds. I like to go months without my pain meds if I don’t need it. Guess body wasn’t used to it and I didn’t feel like myself. I don’t know-how made it from bed to chair get comfortable. Why do they have beds that move in the hospital? Like you have been suck in. I know what into door few times going to. bathroom. Sucks when you getting fluids as well. It’s like hey let’s go to the bathroom, even after you just went. I hate sleeping with oxygen in the nose, and when came to checking and it was low they knew why. Got to the point when I did get out bed go the bathroom I wouldn’t put it back on. Let’s move on from the depressing part. Believe I was on 9 floors 3 almost 4 days. I was glad to be leaving the floor. That means I’m out of danger. Oh almost forgot to mention hip results, everything came back ok and not damage. Just bruise. Omg, I was so happy. Few days that pain was gone, just other stuff had worry about. I moved to the 4 floors once leaving 9 one. A couple of days there and I was a free woman. Lol. On the second day when met doc n, not his partner. My room was full n had student doctors. Let’s just say I’m good on all them looking at me and the room was full. He asks was it ok and said no and he sent them out. Thank God. It’s a plus when the doctor listens to you on everything from how you feel and what you take for pain. They were surprised to find out what I had been doing for pain. I may have a serious illness, but I don’t want to be defined by it. On my good days, I don’t think of having sickle cell. You probably thinking to say what. We like being treated like we’re normal like everyone else who’s not living with chronic illness. Oh, yea almost forgot I did end up getting 1 unit of blood, let me just say I really didn’t want it because of what happened last time. Guess went good, I did scratch but that because of meds. I didn’t get blood till I was in my low 5’s and was getting headache and feeling very weak and tired. My mom had talk sense into me when it came to getting the blood. The way she did it was the only way I was going agree. What would we do without our parents? Well whew, that was a lot to type and sorry it took so long on update. My dad is doing much better, not passing out when he cough anymore. He still coughing but they have him on some meds to help with passing out. He has started his meds for his cancer as well. Well, thank you for being patient and sticking with me on this journey. God Bless until next time.

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.

Posted in 2019, chronic illness, God, My Journey, My Life, poem, Poetry, Pray, Sickle Cell Anemia, Sickle Cell Awareness

Let Me Go

Let me Go
I just want to be free
To get some rest.
To just live my life
I’m tired of hurting.
I’m tired of the pain
Waking me up in
The middle of the night
Making it hard to move
I’m Praying to God
And hoping
I’m not going into crisis.
I don’t have time to be
Down in my body
Just let me be.
I got things to do.
Weather doing its thing
Bringing me down
All I want to be is free

4.17.19

~PJ~

Day 17. Living with sickle cell is no joke. I haven’t been feeling my best lately and wanted to share a poem dedicated to my illness. Enjoy and God Bless