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

Day 1, Living With Sickle Cell Anemia

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

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

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

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, Bless, chronic illness, God, My Life, my story, Update

Update

UPDATE.. LIFE

Hello and Welcome to my World. Its been awhile since I posted and read comments. I have been through a lot meaning to my emotions and still trying to get over losing my Ole Man{ dad}. Its rough when you a daddy girl. Its getting better but still is a struggle to be honest. I have been in hospital a few times. Its weird not having him here when he was the one I usually counted on when something would happen to me. I’m thankful last visit wasn’t long there was more concern about me getting covid then anything. I went awhile before I even step foot near the place since my area was getting it bad and they had sent extra help because of it. I did have to get blood that I wasn’t happy about. One of these days it can kill me instead of help me. Even though I haven’t blog much I have been writing here and there. I’m also thinking about where to go from here. i need go back to school and finish my last year and i still want to blog and educate people on my illness. I cant believe how many people have follow my journey because of the fact I have shared so much. Its a blessing that so many of you care and willing to learn. I still want to bring more to ya’ll. my fight isn’t over yet and its not easy. I must say I haven’t had any bad experience lately. I know the last time I went i got someone I wasn’t crazy about because they don’t know anything about sickle cell. She was making it seem like I had Covid instead of listening to me , I have made it clear that I don’t want her. If you not going to listen to the patient why be in the field period? Another season has come in and pray everyone is staying warm/cool depending wherever you from. I pray everyone is staying healthy as well. No matter what we going through God is still good all the time. Till next time God Bless

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

Life Update

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, 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, 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.