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

Update

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

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

Living With Sickle Cell Anemia

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 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, 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

Posted in 2019, emotions, Health, Heart, Journey, My Journey, My Life, poem, Poetry

In A Crisis

My heart beating to so many emotions
I’m trying to figure if I should stay
Or go
I’m in crisis
My body betraying me
I’m losing the battle
Within myself
It out of control
I can’t come to terms with my emotions
I’m in crisis
And my frustration is at breaking point
I’m losing control
The old me returning
I’m struggling in crisis.
I’m in need of deliverance
I’m in crisis
Crying out
For help
I can’t take it any longer.
I’m in crisis
My head spinning
I’m losing control
Can you hear me?
Do you see me?
I’m losing control
My body betraying me
My emotions
Done destroyed me
I’m out of control
Yo
I’m in crisis
Can you help me?

11.8.19

~PJ~
This poem is dedicated to my life. Do enjoy and let me know what y’all think. 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.