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 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.