September is Sickle Cell Awareness and wanted to share the interview from a fellow warrior who experiences same crap I do and many others. Thank You for coming along for my journey. God Bless
Category: AWARENESS
Rant and frustration
Hey world,
And welcome to Poets Afterthought, as you all know especially the ones been with me a long time my name was a poetic journey, it’s still my journey. I have sickle cell and been dealing with it all my life. But im truly tired of how we get treated when we go to the Emergency room. Some doctors shouldn’t have a license to treat patients, same goes with nurses. I done had my fair share. I usually keep quiet and don’t say what truly go thru with when I go. I’m just sick and tired of us dying because they believe oh she\he look good. Oh, they count fine, send them home. Basically so we can die and never be seen again. I could go on with the mistreatment we receive. I rather suffer at home than put up with bullshit doctors and nurses. I know by doing that I’m only hurting myself. I was watching video yesterday and it broke my heart, we have lost another warrior. We are not getting proper treatment. Point blank, we basically get screwed. Some times I have waited over 6 plus hours in the waiting room just to be seen. Plenty time for us get worse and die. I done waited a long time as well in the room after been call to back, so I could be seen by a doctor. Hell, half the time they run around chatting and joking with one another. I think it’s ridiculous for me to have been half dead are near death for them to do they damn job. I’m sick and tired of the mistreatment. If only they knew what we feel they would have more compassion. Just find out we lost another person. Some of these doctors and nurses still think it’s black disease but it’s not. I had to get blood work recently and had to get port access. One tech who they love call to try and stick me, knows I’m a hard person. Well, she just told me in my file it says to access my port. I’m wondering why these idiots not trying to do their job correctly, but rather put me thru more bullshit than my body can take. It’s sad when you have to pray that you’ll have a compassion doctor to actually do what need be done. How are we going fight when it seems the ones who suppose help us is letting us die.
Living With Sickle Cell
Good Morning and welcome to my world. Today isn’t a good day for me. Idk what’s going on? It’s too soon have another crisis, then again not really. I suppose if they had done the job correctly last time, I wouldn’t be in this predicament. I so don’t want to go the hospital, but deep down I need to. Chest pain and knee pain. I’m concern about chest pain more than anything. Don’t get me wrong knee pain important as well, cause that means I can’t get around by myself and I can’t have that. I going to end these post here since I’m in so much pain, try update when I’m feeling much better. God Bless and pray everyone in good spirit and health.
Update
Good Morning,
Where do I start, I have been out for almost a week. Still, not my best was glad I didn’t need blood. So that’s truly one good thing. I had a doctor appointment with my sickle cell doctor that Friday. Let’s just say they weren’t happy how I got treated at the hospital. My counts were worse than when I arrive. I truly believe they were trying to make room for other people be honest, that’s not a big hospital and truly not the best. I had some great nurses. I’m so thankful for all y’all prayers and comments.i have read them just hasn’t had the time to approve and respond. I have been working on schedule post for the days when I’m not at my best. Some days are better than others. Today is the fourth I pray everyone has a safe and bless one. If you don’t celebrate trust I do understand, just enjoy your day. I know I haven’t mentioned my dad in awhile, next week he hopefully takes his last treatment. Back to update at doc office, let’s say they weren’t happy that I got discharged so early. All I know wouldn’t want drive is ride a long distance when I’m in pain. So uncomfortable. But I may have to keep that in mind, my health comes first. Seems when we try to do what we need do, we still can have mishaps and get sick. No matter what we do, things will happen to shake our world. I pray all is well with who all that lay they eyes on this message. No matter what you going thru, don’t stop. Push and push some more. God Bless
Day 2-3, Living With Sickle Cell
I’m still in the hospital and in a lot of pain. At one point I truly thought, I was getting better, but that’s negative. I haven’t got much rest to be honest. I started working on the post yesterday, but my body wasn’t having it. Some days I just felt defeated. I haven’t gone 7 months with no hospital stay in a long time. It’s being awhile since I gotten sick. Honestly, we know our body better than anyone. With all the rain we have been getting, I’m not surprised on the way I been feeling! I’m still trying fight the sleep. You know as a child we hated to go school. I pray who all were affected by Tropical Storm Cindy, made it out with no harm. My count seems to be playing with me big time. Drop all the way 7.3 and following day it comes up to 7.6. I’m feeling much better than I was, which I’m very thankful for. We a lovely visit from my Lil Lady, she had been texting me saying she misses me. That visit I truly needed to brighten my day. Thank you all for the prayers , it truly means a lot to me. God is truly good all the time. No matter the situation, good or bad. Going end post here since I’m hurting . God Bless
Day 1, Living With Sickle Cell
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
Sickle Cell Awareness
Today is World Sickle Cell Awareness Day. Every day is sickle cell awareness day to me. Go out and get tested, as well as go out donate blood of you can. God has truly blessed me to be still alive. Living with these disease has taught me so much about life and prayers. Today I’m not feeling my best, but trying stay calm and relax. I just wanted to come on here and share it with you’ll. Too many warriors have died in past few weeks and it truly breaks my heart.
Let’s spread the word, never know who live you may help. It means a lot
Chemo Meds? (hydroxyurea)
Hello World,
As I mention a few post back about meds they have me on and I would stop taking once again. Every since I stop taking, I done had less and fewer headaches. You would think they would have come out with meds just for us sickle cell patients instead of pushing the chemo meds unto us. I done tried these meds like three different times. I am damn if I stay taking it and not feeling my best. I have read the good and bad with the meds. But all I see is the bad, to be honest. This med can cover up the fact you be in crisis by making your levels look good when you not. It can make you lose your hair and also cause you to have cancer. And much more side effects. Oh yeah to top if off you not suppose to touch the meds without gloves, but they want us to take it? Ding Ding Ding, where the good at people? I don’t see it are either I just don’t care for the good. Some of the so call doctors only want to pump us with meds just to get us out of there faces. Last year I had some problems with E.R doctors. They didn’t want to do they damn job and could have cost me my life. I was seen in E.R over 10 times in one period of a month. My retic was high as I don’t know what came down to it when I was in full blown crisis, my counts were low as heck. I don’t know how I walk in that hospital but I knew for a fact I wasn’t walking out of it the same day. I was so thankful to have good E.R doctor that day. And I was on and off that meds at the time. How am I suppose focus if my head feels like it wants to explode into next week? How do you make time with your family count when all you feel is downright awful? So many questions and not enough answers. I have two doctors that’s, not in my area, but I hate to have travel long way when I’m hurting. Sitting too long in a car is so painful. You don’t have to have a sickle cell to understand where I’m coming from with that. I have been on Folic Acid since I was young and to be honest, I rarely take that med every day than to take chemo meds that give me more problems than it should. What do you do when you done gave it chance after chance, you throw in the towel with the meds and move on and live your life as best as you can. I’m either nausea all day are drained and just want to sleep. Why not correct a med just for us that may do more good than bad? It’s bad enough we having a fight with our body on the inside, but it would be nice to know someone was out there creating something to help us along this journey to live instead of giving up the fight as so many of us have. It is even nice if someone was creating a cure for it as well. Yes, I know only God can do that, just hurts to read so many losing the fight. Until next time God Bless 🙂
Update
Good Morning World,
I know it’s been awhile since I last posted. I have bn busy trying find new primary doctor, taking care of myself at home without er visit. It hasn’t bn easy, but haven’t been in one, in few months. Before I forget hope everyone enjoyed Easter. And we all know the real meaning of it. So I won’t go there right now. I’m not feeling my best at the moment. I have appointment with m hematology doctor Monday, just trying hold out till then. Pray for me please and thank you. Well good news I find primary doctor and cant wait meet her next month. I’ll make another post on that. Hopefully Monday I’ll have good news on what’s going on with me. Usually my counts drop some. It hasn’t been in 8’s for a few months now. In December I had stop taking meds that would help lessing crisis and E. R visit. I had the worse Christmas ever. I was in bed most of the day. My head felt like it wanted explode. I ran fever as well. I refuse I was going go to hospital another christmas. So when saw sickle cell doctor two months ago, they put me on it again but took it down 3 instead of 4 and lesser doses. I hated the meds years ago and I hate it now. Let me tell you I don’t know how much longer I’ll keep taking it. Right now I’m still having headaches every day. Not sure if it’s from meds are I’m getting sick. I truly have miss blogging. I have started writing again, I take it I have been bitting by writing bug. I can finally express myself the way I should and deserve. I pray all is well with each and everyone on you all. God Bless
Update
Good Morning World,
I pray all is well with each and everyone of you. It seem I always find my way back later then I would like to blog and check in with each and everyone of you all. We already in month Feb, be over soon. I love that its a short month to be honest. I really don’t have much to say. I just bn taking one day at a time and process of still looking for primary care doctor, everytime I think I have one they don’t take me for whatever reason. Since the last I posted my dad have started his treatment. Which is up and down days and he truly believe its helping. Such good news to hear from a love one. God is truly good all the time. He needs 2 units of blood since last visit for treatment a few days ago. He goes twice a month and come home with it and let it run its course. He such a strong man, but trust even the strongest have they moments. Good be prayed up. I have had two er visit and lets just say the first one went good. The second one not so good. I already hate the hospital that’s closer to me because half the doctor don’t do they job. Just cause they see a black person come in with sickle cell they think the worse. And half do they job, but I plan on doing complaint to take care of that situation. Enough is enough and I do mean enough. Sad say its not just black disease and till some go back to school and learn how the handle the disease a lot more of us are going to die. Im tired waking up every day and hearing how we lose another warrior. It piss me off. I know we all die but to see they tried get help and to be treated like animals just make my skin crawls. I believe going to end post here before I work myself up over stupidity. I pray all is well with each and everyone of you all. Hope to check in real soon to catch up on comments and blog post. Thank you all for staying with me and for the one’s that just join and I know I havent bn posting much.
Poets Afterthought 