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

Living With Sickle Cell Anemia

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, 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, 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, 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, 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, AWARENESS, chronic illness, My Life, Sickle Cell Anemia, Sickle Cell Awareness

Lack Of Care

It’s sad how so many of us are dying due to the lack of care/ and knowledge. We’re dying because they don’t want to listen to us and think we faking it and want to be drugged up. I wish I can be normal but that’s, not the case. Im a warrior and in this fight till im call home. It breaks my heart to hear how we are getting treated. Hell, I still hate going to the hospital with all the BS I done went through. It’s getting better, but that nagging fear still in the back of my head. On my last stay, I was blessed with a good doctor who took the time out to hear my voice. I was so shocked it threw me off. I even had a good CNA! We stay in touch to this day. Doctors and nurses need to go back to school and get more educated on what the hell is Sickle Cell is. I hate when they ask how long you have been living with the disease. Im like what the hell. All my life. I done had so many compassionate nurses than doctors and that says a lot. The question is when will they do better by us?. We want to live and not die by their stupidity. From on out ill be doing more on my illness. Im tired of hearing someone died when they could have lived. We shouldn’t have to be scared of going to the hospital. Im is sorry if im everywhere with my post. I just want us to be heard and to show yall what I go through with living with this illness.