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
Tag: Sickle cell anemia
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
Living With Sickle Cell Anemia
Today isn’t a good day, I have been hurting since Tuesday. I haven’t seen inside hospital e.r since the beginning of the year. Some days are better than the others. I may be going to the hospital later today, but let me tell you, that’s the last thing I want to do be honest. But the meds aren’t working, I haven’t had pain meds that hospital give it a long time. I have been taking nerve meds to relax, but it’s not working. So I know what I need to do… It’s the idea of ignorant doctor knowing more about my illness that’s turns me off on going to be treated. I truly believe some doctors are out to kill a lot of us with this illness.. Oh, your blood count looks fine, so we not going to do anything. The last time I went. My retic was high, did the idiot check my counts nope just retic. Did he give me any meds that I was suppose to get. Nope, he gave me something I never had before and it made me feel worse. Did he give a damn, nope. They truly believe giving us fluids should help without proper care. I just hope when I do go to the hospital I don’t have to deal with idiot doctor. My whole body is betraying me in the worse way. sighs…Do keep me in your prayers, I’ll be cutting these post short, because hurting too bad to focus properly. I pray all is well with each and every one of you. God is truly good all the time,
no matter what we go through. He got us.
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(doctor appointment)
Good Afternoon World,
What a day, had wait an hour to be seen. That’s one of the reason I hate doctors offices, you hardly ever seen when you suppose to be seen. But honestly I can understand when you go to oncology/hematology doctor. They see so many patients, many cancer patients on top of what I have. I know some maybe getting bad news and some maybe getting good news. My heart goes out to the one’s who receiving devastating news. Today was sorta good day. My counts were 8.3 and 24. I haven’t been that high in a while. It might be from the meds that suppose to help me have less crisis, but I can’t handle them headaches with the pills. I just have to stick with my Folic Acid. Besides I have been cutting back on a lot of things. So whose say I truly need that meds. I hate reading story of woman losing they hair to the meds. Some even had to shave they head and go natural. Me on the other hand I’m already natural and I would hate to have to start over again on my journey. I must admit I love my doctor. I love how he talks about God and come in with good attitude. When you find a good doctor, you know you in good hands. If only he was still in the state of Alabama and not Florida. It’s cool day here, but nice breeze and weathers. I love it. Not to hot and not to cold. I didn’t get chance see the sun till about around 1. It was gloomy all day. I must admit I might some nice people while waiting. I’m usually jamming and not paying attention to my surrounding, but t.v no music in ears. Did have a good boom read but still had chance talk different one’s. I believe out of all them was older woman. I’m hoping she got good news, she came out in good spirits, telling different one ‘s bye and speak to them later. Before she left she said God Bless sweetie and I said it back. Her strength showed through her character. Well going end post here. I pray you all are well. 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
Poets Afterthought 