Posted in 2019, AWARENESS, Death, fight, My Life, poem, Poetic, Poetry, Sickle Cell Anemia, Sickle Cell Awareness

Our Fight

So many dying around us.

Young and old.

Will it ever be a cure.

So many deaths.

I’m tired of reading we lost

Somebody.

Somebody family is hurting

And suffering.

When will our care get better?

She/he fighting for their life.

Sickle cell

Needs a cure

And doctors/nurses who care.

Were tired of getting judge

Just cause you don’t know our pain

And understand our disease

When will y’all do right by us

So many dying

I’m tired of reading we lost

Warriors.

This fight is getting difficult.

Seems nobody cares

So many dying

Young and old

We fighting to live

each and every day.

All we want is just to live

2/10/19
PJ Prim

 

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Posted in 2019, Cancer, family, God, My Journey, My Life, Sickle Cell Anemia, Update

Update

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.

Posted in 2019, God, Health, My Journey, My Life, Sickle Cell Anemia

Living With Sickle Cell Anemia

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?

Posted in 2017, AWARENESS, Death, fight, Health, My Journey, My Life, Sickle Cell Anemia, Sickle Cell Awareness, Update

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. 

Posted in 2017, AWARENESS, Cancer, God, Health, My Journey, My Life, Sickle Cell Anemia, Sickle Cell Awareness, Update

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

Posted in 2017, AWARENESS, Cancer, fight, God, My Journey, My Life, Sickle Cell Anemia, Sickle Cell Awareness, Update

Chemo Meds? (hydroxyurea)

Hello World,

604290265As 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 🙂

Posted in 2017, AWARENESS, Cancer, Health, My Journey, My Life, Sickle Cell Anemia, Update

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.

Posted in 2016, AWARENESS, fight, Health, Journey, My Journey, My Life, Sickle Cell Anemia, Update

Update

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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

Posted in 2014, AWARENESS, Health, My Journey, Sickle Cell Anemia, Sickle Cell Awareness, Update

Living With Sickle Cell Anemia

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Hey and welcome to my world, I have had a rough weekend. I don’t even know where to start. I’m so ready to throw in towel, seem some doctors don’t take us meaning people with sickle cell serious. Everything seem come back fine with my sc. Soon as I got home guess who couldn’t walk, hurt breathe. When I move I cried, yep if you said me you so darn smart. God Bless You! I even tried go back to er, let me tell you I didn’t want go. I just wanted to well we ain’t going go there.  By end of night I was worse then night before. Went to another hospital,  the first test they did was flu test,  since fever was 101.3. Came back positive for h1n1. I was shock as he’ll to be honest. Nope don’t get shot, haven’t had it since I was teen got shot n was bless with flu. When I’m out,  I carry Sanitizer n other stuff to help not catch nasty germs. That hospital said they didn’t keep flu patients, I was throwed by that. I had be tough n get shots,  so wasn’t please.  I was bless with port for a reason. I been in bed all weekend,  at doctor office. I start classes again, last year. When will it end, must say not happy See my doctor since didn’t catch it. Sighs. I hope to come back with another update soon, pain taking over,  hope I made sense. I pray you all is well n Ty for joining my journey. God Bless

Today mark my surgery anniversary. GOD IS TRULY GOOD. 😄

Posted in 2014, God, Health, My Journey, Update

Update

blogHey Everyone, and welcome to my world.  I haven’t been feeling my best but been trying to do what I can, as of right now. I have made some visit to e.r since my doctor have been on vocation. lets just say them visits’ didn’t go so well. I got sent home every time feeling worse then before. First time I went, had rude nurse practiner… It took God him self for me to hold my peace and not lose it.  Next time to had cool doctor, he explain everything to me on dis visit. Since my blood count looks fine, didn’t see a reason to keep me. He also told me that I know ya’ll can have pain even if blood count looks fine and retic. He tried to do everything he could, but since obamacare everything seems to be difficult to do. Hmm always something. Must admit its getting crazy for me as a person with chronic pain, if meds at home not doing its job. Taking meds and drinking  plenty fluids (water). I guess it a roll into E.R on my death bed then I get treated the proper way. Other then that my plumbing problem is almost taking care of that’s why I’m posting from home. I’m dealing with my nagging headaches, so it’s making it harder for me to post and read like I want 2. So do bare with me. I hope everyone is enjoying there summer, I hate the summer, its hella hot.. And not good for me. Who wants to stay in the house all the time? Looks around not me…  I do pray all is well with each and everyone of you all. So thankful for all who have join my journey. I now I have been slipping big time. So do bare with me, I have been writing, I just need to type it all up so I can share it with  you all.

 

 

I haven’t did update on the lil one’s in awhile. They getting so big and tall. Lil lady is 6 now and Mr. Man is 4. School will be starting soon for lil lady and of course Mr. Man will be going back to Daycare. I must say so glad to be home to enjoy peace and quiet. Maybe my headache will stop. I’m praying it does.. They grow up so fast right? Lil lady have become so freaking sassy its driving me crazy. Nast lil attitude for someone so young. Ha, I think I maybe rubbing off on her with attitude part. Ha. Mr. Man have one as well, and his tantrum is grr… That’s all I’m saying. Nope I’m not missing them whatsoever on this point. On flip side, the MOM who had them finally came home from prison. I must say I haven’t change my mind about her. I need proof that she done change and want to be in her kids life. One visit from my lil lady, she done got worse. Attitude … I already not liking it, but hey I’m not finna stress myself about it.. Another quick way to put in hospital looking crazy… Believe that’s enough update for now…