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
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.
Good Morning and Welcome to My World!! I don’t know if I’ll return to blogging. My world has come crashing down on me. I know it’s best to write then let it all build up on me before I explode. I lost my ole man on 6, cancer took him from me. I’m actually doing stuff to not think of him not bn here. But it’s hard when he was my hero. I finally wrote last night and it broke my heart. I know he in a better place but I just want him here with me. I did get a chance to tell him I love him the night before. He didn’t say it back he was hurting so bad. Omg to see him suffering was heartbreaking. I wish I could rewind time back to when he was healthy and strong. I know we’re not suppose to question God, but I wasn’t ready to let him go. I knew deep down I was going loss him, but not so soon. I think I’m going end post here. It’s breaking my heart. I do pray all is well with each and everyone of you all. God Bless
Hey and Welcome to my world, for some Welcome Back. What a day I had. Finally got to meet my primary doctor and so far I must admit I like her. I’m so not a morning person and I had to be a walk in person. OMG! So had to be there at 8 this morning. Sighs. You guessed it still had wait be seen. Sighs. I hate the doctor office for that reason. Waiting! Got to the back prob before 10. Gave them all my information and told them why I was there. As some of you may know I have a nasty little cold and she orders x-ray that plan get tomorrow after my doc appointment. Since I have sickle cell we trying make sure it doesn’t turn into acute chest or pneumonia. Who knew meds for something else could give me a cough that evolves into a nasty one. In the back of my head, I’m saying duh. Lol. Anywho we made the visit sweet was the student doctor working with her. I’m not fond of students working under nurses or doctors. But she actually surprises me with the questions about how she can be a better doctor when dealing with sickle cell patient. So gave her a few of things I been through and how I have been treated. She sat and listen to me talk. I pray she never change from listening to her patients. I even gave her my blog link. I explain to her so many people still don’t know what sickle cell is. Before actually open up to her I as if she knew what it was she just knew the basic of what’s in the book. You would think after all these years they would update the information. Still not my best but hoping the meds help. Will keep y’all updated as I go. Have Eye appointment tomorrow. Until next time God Bless
Hello, and Welcome back to my world. What a day I had. What I hate about doctor offices is to wait. I did mention had an appointment both days. Let’s just say Monday was a waste of time and gas. They went prepared for my arrival and didn’t want to see me because they didn’t have paperwork from the hospital, which I didn’t understand. You knew about for over two weeks. Always away from that. I arrive on time for both appointments. They did apologize but still, I was not happy. You are my primary doctor so it wouldn’t kill you to finally see me in person. Nope, I see my other doctors more then I see primary. Haven’t even met her yet. Yea something wrong with that pic big time. My sickle cell doctor was the most important for me to see. I had called in the week before explaining to them what had happened when I was in the hospital. I wanted blood work and wanted my results. She set everything up for me. Soon as the appointment was over went next door to the hospital to get labs drawn from my port. So back to my appointment, hadn’t been seen since Feb. She was like you good. I know I haven’t mentioned here before. I have changed my diet. I went keto and it has helped me a lot. Kept me out of the hospital. Lost over 60lbs. When on chemo meds for my sickle cell I had gained weight and couldn’t lose it. Then the new meds for sickle cell. It was making my head and back hurt. And I couldn’t deal so I stopped it. I had to first help myself and I have done just that. I honestly did my research for about 4/5 months before I went for it. I don’t have a gallbladder. Anywho back to my appointment.she check my heart and says sounds good. She asks me about meds she wanted me to start last time for my kidney. Told her I hadn’t started it yet. Since my body is doing overtime then a person without sickle cell. So she changes the mg since I’m smaller and started it last night. Never happy about trying a new medicine. So next visit we will see how everything looking. I’m putting it in God’s hand that everything is good and I won’t have to take it forever. I was glad I didn’t have a long wait for a tech come do my port. She was a nice woman and we talk while she did it. I always like to get to know whoever is dealing with me. I hate for my port get infected. I finally got my result around 5 and no new antibodies praise God. White counts were good. Retic little high but it’s be expected since my counts 7.6. It’s the best but it for sure not the worse. Praise God. Also, find out my bones in my back are deteriorating. It explains a lot when I’m going into crisis. Just a few days ago, I couldn’t move because I was hurting so bad. I read other sickle cell patients having the same problem. But so wasn’t expecting I had it. With so many people dying from my illness. I want to share my illness with y’all. Until next time pray everyone doing good. Stay Bless
And welcome to my world. I took a break from writing about my disease because I felt like I was talking about it too much. But honestly its truly not enough information about what I and many others go through on daily basis. September is Sickle Cell Awareness month. With so many dying left and right and it seems like every day makes me wonder what is going on. Why isn’t there much information about what we go through and why does it seem like the doctor and nurses have stopped giving a damn about us? It’s time to better educated new and younger doctors/nurses about sickle cell and stop making it a black disease because that’s not the case. And time spread awareness on sickle cell trait. I got to stop being quiet and start opening my mouth and let the world know what’s going on. I have debated for a few weeks now on coming back and doing what I started. Some may not like my content and that’s fine. On days when pain is so bad, I pray that God calls me home cause it be just that painful and nothing love ones do doctor and nurses help. I recently had E.R visit after going months without having an issue. Sorry, I take that back, I fought it home a few months again. I haven’t been admitted since May before my bday. God is truly good all the time. I’m not sharing my story for pity, I’m sharing my story to spread awareness. The more I stay quiet the less is getting done for the sickle cell community. I do plan on doing an update post on how my experience went with hospital visit and doc appointment. I pray all is well with each and everyone of you all. God Bless
Good Evening World,
Its been awhile since I posted. Every time I would start this post, something always came up. Funny how life slows you down when you so determined to do something. This may not be the posy from months ago, but hey its an update post. My dad got good news a few weeks ago, the new treatment is working and cancer shrinking. God is truly good, even when you going thru your own storm. I have found a new primary doctor, hoping have a post about that before year out. Its almost Thanksgiving, I have a lot to be thankful for. I’m alive, not in the hospital, surrounded by loved ones. I’m free, I could go on. I pray each and every one of you all is well. Hope have a better update in future. God Bless
Good Evening, I decided to make E.R visited yesterday since the pain wasn’t letting up. My mom actually pushes me to go, so they could give me some fluids and oxygen. Let me tell you I was thankful the doctor I like was working. He actually knows a lot about my illness so that’s a plus. My counts weren’t too bad was in middle 8’s, with an 11 for the retic, which let me know why I was hurting the way I was. With two doses of meds, my pain wasn’t moving. I didn’t catch it in time and that’s nobody fault but mine. I have been resting every since I got on the floor, let me just say probably slept 5 or 10 mins be honest. I can’t rest like I want when I’m hurting. I have been having chest pains on and off over the past week. So he made sure to do an x-ray to make sure I didn’t have an acute chest. I’m hoping and praying these a short stay. I have a nice doctor, she had to change my orders how often I get meds before seen me. That meant so much to me. She took the time out to read my orders and what was done last time I was admitted. I got some good nurses as well. Loving with these disease has taught me a lot. Taught me how to pick up on signs and what not to do when it’s already too late. I was getting upset with myself yesterday cause nothing was touching the pain. I thought I was doing everything right, but it doesn’t matter if you do what need be done. It comes with vengeance over of body. Sorry cut these short, but I’m getting tired hopefully I can get some rest. Truly means a lot if Y’all can keep me in your prayers and thoughts. Until next time, pray every one of you all is well. God Bless
Good Morning, I pray all is well with each and everyone of you all. I’m sitting here at my eye appointment waiting be seen and wanted to check in with you all. Wow spring is finally here and the weather being a little crazy over my way, how about y’all? I have been doing schedule post when I know I’m not going have the time to do it a day. They truly come in handy when I’m not at my best. But not all my post or schedule. I made a error dis morning and it took my schedule post back to the 9, sorry about that y’all. I’m hoping today appoint go well, my eyes being giving me problems and I have to have dis done once a year to make sure my sickle cell isn’t doing major damage. Lately I have being hearing how so many sickle cell warriors or dying. Always hit me hard, when I hear heartbreaking news. I know one day I’ll be call home. Every day is a struggle when it comes to my health. Some days I dont want get out of bed. Some days I want run away from a dis. Some days I just give it to God and continue my fight . I may be strong but I do get weak at times and discouraged. Okay I’m getting carry away here. I’m hoping have a post dedicated to dis soon. Till next time pray all is well…
I don’t have a regular post today, due to the weather. we’re under tornado watches and warnings. I just got news that one of my friends homes got damaged due to storms. I was waiting for tomorrow to do update Post but so it seemed I may have to cancel my doctors appointment. I believe we will still be under the warnings and thunderstorms tomorrow. Tomorrow is never promise to anyone. So on that note I shall end my post till tomorrow.
I do want to let you all know with any of my post I do love inputs, thoughts, opinions, whatever you all may want call them.