Hello and Welcome to my world once again. It’s been a while and a lot has been going on. I don’t know where to start but I have been in and out of hospital almost every week. They weren’t listening to me. But I believe I’m on the right track now. I do have a check-up coming on in a few days. I truly had some good doctors that took the time to listen to me. Listen so good they made sure I was seen this week. It’s a blessing when God put the right people in your care. This month has been rough for me. I know for a fact, I’m not ready to stop living. So it’s time to fight.
I have been having trouble with my heart rate getting high for no reason. Then my blood pressure got high as heck. 175/100. I was going thru it, to be honest. I wasn’t stressed The only time I would stress is if certain people would call with nonsense about stuff I can’t do anything about it because I’m sick. It’s crazy how they want to bother you when you are down? Anyways my counts ended up dropping and had to have blood. Just thankful it didn’t take me long like a month or two ago when dropping to 5.4. God knows how to slow you down. I truly have lost my way. My faith has been shaken. I’m working on finding myself again. Meaning spiritual and emotional and physical. I’m ready to start living again. I know the last visit I had started blogging and sharing more. But it was hard to focus thru pain and meds so gave up. I may share them still but as of now not sure about them. Going to cut the post here because tomorrow is doctor appointment and hoping to share more. I pray everyone us well and safe. God Bless
Please forgive me for the visits. Let me get myself together and I catch up soon.
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
Good Morning and Welcome back to my world. Finally made it to my sickle cell doctor and must say glad be back on some of my meds. So far my sleep is blah. I done got out of bed, so many times. Either use restroom or something to drink. I done fold clothes up, played a few games on my phone. Why Am I Up? I need sleep, like right now. Guess I took my sleep meds late and body is like oh no we ain’t with that. Sighs. Tossing and turning and dealing with pain.
As some of yall may know if you been with me for a while. My dad has cancer. Well, he had to have surgery back in November because one wasn’t shrinking. It was getting bigger. The surgery went well. Thank God. He went for a scan last week to see how the others are doing since starting treatment again. They shrinking but two of them. The doctor wants to go in and remove them. My dad was like like let me think about it. In other words, pray about it and talk to the wife about it. You know God is good all the time. No matter what you going through. I can’t imagine not having my dad. When we find out a few years ago. It was shocking. We could have lost him. I thank God for that doctor appointment after Christmas. His counts were low. We knew something was wrong, but never in million years, we think it was cancer. We had to literally tell him to go to the hospital. He needed blood because he was losing it, and to see what was going on. His primary was like it maybe its cancer or an ulcer.
My nephew just celebrated his 9 birthday these past weekend. They grow up so fast. Where has the time gone? He celebrated his bday at the bowling alley. Second year in a row. No bowling, he chooses the arcade and lazor tag.
Hey and welcome to my world. It’s been a while since I wrote anything about my disease. Every since new year came in I have been hurting and dealing with a minor crisis. I have made two e.r visits. The first one I should have stayed but I felt like I was better but let me tell you it was all in my head because I got worse but refuse to go right back. When you been thru hell with medical staff people you choose to go home then being judge from people who don’t know your illness. I ended up going back Sunday and counts had come back up but was still hurting. A different doctor that day and since counts look better they wouldn’t admit me. So I had tough it out at home.
I haven’t seen my sickle cell doc since September and ended up losing my primary doc because she moved back home. Without primary doc, you can’t get in to see a specialist without a referral. So I have been without my meds since November. I must admit I don’t miss taking them, but I know my folic acid is a must have for me. To help me stay healthy. You don’t realize how much you so dependent on meds, like my sleep meds. I haven’t been sleeping lately. I hate the pain meds they have me on, makes me itch and let me tell u I hate scratching. The E.R did a number on me. I have so many fresh scratch marks on me from a week ago. Nope, they haven’t healed yet. I have been taking over counter meds to help with minor pain. I finally find a new primary doc and hope meet her next month. My blood doc got me in to see my sickle cell doc next month on 4, so I’m happy about that. It’s odd how I can see cancer/hematology doc without a referral. So thankful for him. Also get labs and result on the same day. My count has dropped once again. Guess that’s why I been cold so much lately and hurting. Winter is heck on my body. All I want is feel normal without pain, but I wouldn’t wish my illness on anyone. It amazes me how many nurse and docs have compassion and the ones who don’t. Are we allowing frustration of someone we once love to destroy the compassion we have as human beings?
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.
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
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 🙂
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.
Welcome to my world, I know it bn awhile since I wrote or had the courage to type. I have bn going thru a lot with my illness and dealing with idiot doctors I’m glad it’s finally finna be some warm weather we’re I’m at. I’m having more trouble with my shoulder so I have voice or either wait to I’m feeling upto typing. I also bn thinking what to do about my blog since I have bn abandoning it lately. I supposed I could do a post just talking to you all once a week about my week about what’s going on with me on my side of the world. I pray everyone had a good valentines day with there loves. I don’t do valentines, I see that as a every day thing, not just one time thing. But hey that’s just me. As I mention early in post about idiot doctors, seem to be having trouble when I go to er . I have do farther off, and that’s foolishness to me. Last weekend I suffer to Tuesday. Honestly I didn’t have the strength to temp move and be bother with people. I tend to have attitude when I’m hurting. Some say mean as a snake. I was glad know my counts went up a little after starting my meds I hate. I had went see sickle cell doctor back in December and they up my hydrea that I help, supposed help less my crisis but also makes me throw up and not want to drink water. I have to drink water, that’s a must for me. I was throwing up blood and I had stop it and go back to the other one till I see doc next week. Ill end post till Wednesday, hope all is well with each and everyone of you all. God Bless