Posted in 2019, chronic illness, fight, God, Health, My Life, Sickle Cell Anemia

Living With Sickle Cell Anemia

Welcome to My World. I made it a year without admissions. When you know your body, you know your limit. I tried so many times to push myself so I could make it to the little lady party the following day on 18. It was strange getting admitted when the dr. on the floor told me and not the E.R doctor or nurse. I wasn’t crazy about having to deal with E.R doctor, to be honest, we don’t have a good past. He did give me the wrong meds before. Thankful it wasn’t my time to leave here. After coming in and talking to me. Idk what kind of meds he was trying to give me. It’s something they give preg woman. Didn’t touch my pain but was trying to put me sleep. Different Things we go thru when dealing with people in the medical field makes you wonder how they got a degree. I didn’t have my usual nurses I usually deal with so having one got in E.R wasn’t umm pleasant. Getting on the floor was a different story. I was glad to be on first-floor just not crazy about the room I was in. I didn’t like how the doctor did my meds because the pain wasn’t been touch and had to practice my breathing to get thru the night and the next day till the doctor came to see me. When they see your counts still dropping they want to move and so right by you. Didn’t have the doctor I was used to having when all they have do is look at my file. Makes you wonder why they make stuff harder? My counts were 7.4 when I arrive, retic was 9 and hematocrit was low as 20.3 and the next day it was even lower in 17 and I was 6 in my counts. So who was looking at blood transfusion that they haven’t had in over a year or more? Believe or more. I got cross and type but had to wait till my blood was found since I have antibodies. Took it a few days which was a surprise. What was a bigger surprise I was itching the whole time during the first unit? We had space the other unit out. The same thing happens to that and they stopped it. I never had that happen before. So they wanted to clean up the mistake and I’m still waiting to hear what happen. I have 3 doctor appointments coming up. So I’ll find out if anything happens are not. If you wondering if I got medicine to prevent itching and answer is yes. Always have to get it, so I won’t have a reaction. Just this time around it didn’t work. I even got steroid meds for the second unit and still the same reaction. I wasn’t crazy about steroids but hey whatever helps. One does of steroids can’t make me gain weight. Lol. The one unit brought my count up to 7.3 and it drops till 7 the next day. I didn’t want to be there for my birthday, so was glad to get a discharge. I hate that haven’t been as active in the blogging world but still taking it easy. I did t know my counts was that low when I went in. You think it’s a small thing and it can be a major thing. Does make me slow it down some and take care of myself. It’s hard to do that and grieve at the same time. It’s hard to deal with sickle cell and remember not to get to happy are excited or whatever. It’s possible it can kick a crisis in. So thankful for all the kind comments and prayers. God sends the right people in your life. You never know who you need and why, but it’s truly a blessing to have. Pray all is well with each and every one of you all. I plan on doing a post with doctor visits. I know one doctor I’m meeting for the first time. Hope it goes well. Hate new doctors and starting over. Sighs. Do anyone else feel that way? Ok, maybe not hate it dislike. Who knows I may just hate change. Lol until next time stay bless.

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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

 

Posted in Uncategorized

Living With Sickle Cell Disease

Hey and welcome to my world. As of lately, I haven’t been feeling good. I couldn’t use my right hand to do much of anything. Feeling a little better today. I had to make E.R trip Sunday because I was hurting so bad and right hand is and was swollen. I had to debate with myself if I wanted to go. The crisis started late Saturday night, I knew I didn’t want to go that night and be stuck with a lozy doctor with no bedside manners. I know I shared some of my experience with you all in the past. I was worry I would have the same problem as Sunday rolled around. I finally made up my mind go before it got worse. The wait was prob over an hour it was a busy day. Got triage out the way. I did t like the doctor who name was on my band. He was the same doctor that gave me med I’m an allergy to and can kill me. The doctor never wants to listen to the patient. I got a woman doctor who I had when been admitted on the floor. She now works in E.R. Before go into more information on my experience. I have bn going cold turkey without my pain meds. Haven’t had it since June but did have E.R visit last month. So I made sure let her know that. She wanted to just give me fluids and oxygen see if that helps. Red flag, if I could handle my pain at home I wouldn’t be made E.R visit. So I was in pain for over an hour before got med. Thankful counts were looking oh do good, but at the same time I know just because of counts show good report doesn’t mean anything. She was like what should we do. She caught me off guard with that question. I have never got asked that question from a doctor at that hospital. I was like is she pulling my finger she can’t be serious. She was like we going to give you some meds so you can think about it. She even asks what I take. I’m like yea this got me a joke. But she was serious. I decided to go home because I could go to my sickle cell doctor and pick up my prescription. She gave me a look because she knew I was in pain still. And sometimes I do end up returning back to E.R. she gave me three bags of fluids before she discharged me. Sometimes you have been strong when you don’t want to be. Don’t get me wrong I was getting frustrated because of my pain. I wanted to cry and scream but I know to do all that would make it worse. I did have some good nurses that night. And woman got my port on the first try, when I went last month, they had a hard time. I had request a nurse who never miss doing my port. When you hurting, you don’t want to hurt even more. I did pick up on the doctor I don’t like voice and was glad I didn’t have a deal with him. God is good all the time. I did get a chance to see my favorite doctor who got me last time. I wasn’t on his side and he was like she is good. He always let me know what’s up with nurses and doctors. I can talk to him like a friend. Both hospital visits were not so bad. I have started taking my Endari meds again, so I’m taking that’s helping with my counts. My retic was high. I usually get sick and have been admitted in October. Still not 100 percent. I have post and blog when I’m feeling ok to pick up. My hand is still swollen, it’s going all the way up to my shoulder blade, to be honest. I pray all is well with each and every one of you all who read my post. And thank you for the prayers, I can never have enough. God Bless.

Posted in 2018, AWARENESS, God, Journey, Mini Update, My Journey, My Life, Sickle Cell Anemia, Sickle Cell Awareness

Living With Sickle Cell Anemia

Hey World,

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

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 2016, My Journey, My Life, Sickle Cell Anemia, Update

Day 4-5, Living With Sickle Cell Anemia

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Good Morning World,

Wanted to do update for y’all. I’m still here, hoping go home today. My counts was still 7 and retic 12. I’m hoping things start looking up today so I can blow dis joint.. lol lately we been getting rain so we have been under tornado watch and flash flood warning as well. As of today my retic is 16 now. Its bee  awhile since my retic have been dis high. I was hoping go home today. Ty for the prayers and comments, truly means a lot to me. I have a great doc and nurses. As the doc said to me today. His here to serve me… his truly dedicated to his patients. My right hand is starting get better. It was swelling up, made it hard for me to move fingers. Well I’m going to crash out. Pray all is well each and everyone of you all.

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

Day 1, Living With Sickle Cell Anemia

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Hello Everyone,

Writing from my hospital bed. I’m not feeling my best. I was planning on doing a post yesterday saying living with it, but I couldn’t take the pain no more.. I was throwing up and gagging a lot. Come find out have fluid in my lungs, seems I may have a touch of pneumonia.  I have a great group of people on my team here. It took me awhile get on the floor dis morning. I’m trying write to distract me from my pain.  It’s not really working. My port still not letting them pull blood from it. So when they came around to check port I let them know and she reclog it to get it working. I’m not ready to get it replace. I know it still works,  it can be flush and I can get fluids, and meds. My right hand is swollen real bad so I’ll cut dis post short with you all. I pray all is well with each and everyone of you all. God Bless:)

Posted in 2015, AWARENESS, Friends, God, Health, My Journey, Pray, Sickle Cell Anemia, Sickle Cell Awareness

Day 1-3, Living With Sickle Cell Anemia

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Hey Everyone,

 

As you can see by the title I’m in hospital, been here every since Christmas Night. So glad I had the chance to spend Christmas Eve and Christmas Morning with my love one’s. I was trying to make it to the end of the month. I was hoping it would pass.  I had to have transfusion today. Blood count had got low, I knew something was wrong since I been having headaches . Its a sign that your blood count can be low or I’m getting ready to go in a crisis. I do hope everyone of you all had a Lovely Christmas. Well better then mine:) I have some great nurses and doctors. So thankful for that to be honest. Last time I was sometime last month, and doctor wasn’t doing right by me. So I left the hospital, and lets just say I was in a lot of pain. I’m hoping to do right by myself dis time around. I’m hoping to go home tomorrow if everything come back looking normal. I’m still in some pain right now. Hoping the blood did some good for me. I try not to get blood, because one day when I’ll need it , it may not help me . Sighs. Well I had warm Christmas, seem the cold front is coming in. Guess its a good thing I’m in hospital now, to prevent all that. But its just cold in the evening time, so it shouldn’t be 2 bad. I’m going to wrap this post up, because I’m getting tired and restless. I haven’t been sleeping much for whatever reason. I always got some stuff on my mind. I know I have check up on the 4 to see how the meds is  doing. I hope good news, but I really haven’t been on them since I been in hospital. Only meds they giving me is my pain meds and not my every day meds.  I must say it truly means something  when you have  a great group of people taking care of you. I even have some nurses coming visit me since they always say I’m a good patient. Makes me feel good when they think that about me. I feel like I be getting on there nerves at times. But I have met some that have became friends.

Posted in AWARENESS, Death, fight, Health, hear me, My Life, poem, Poetry, Sickle Cell Anemia, Sickle Cell Awareness, Thankful

My Life

How can I speak…

when I’m only one

person…

You seem to look…

at me crazy…

Cause of the pain..

and you don’t understand…

Yes,

I’m one in a million…

So many of us or losing..

the fight…

So thankful for the one..

who fought with me..

You may not hear me…

But I know many hear me..

and join me to fight for our..

rights..

Do you hear me?

I hate to yell but hell..

my pain is that intense…

NO act..

over here..

We want Justices…

done…

We tired of been

mistreated..

some die in pain…

because of the abuse from

the one’s…

who supposed to help us..

Do that make you all happy?

see so many dying?

Technical I’m not finish with it but wanted to get it up, while I have the time and strength to share. I wanted to share it last month, since it was Sickle Cell Awareness Month. But you all know its every day for me… Do enjoy and let me know what you think.  The poem says a lot, so many sickle cell warriors have died this year. We don’t have it easy when we go to E.R/hospital. Since so many don’t know what it is or what we go through. We get sent home in pain or mistreated while been in hospital. I know you all have read a few of my post, and know I had could not so good nurses and doctors. I’m praying for cure for us.

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

Day 4-6, Living With Sickle Cell Anemia

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Hey and welcome to my world. I must say I’m not home yet, which I had got my hopes up on going home. I’m praying for tomorrow.  Still in some  pain, but not as bad as when I got admitted. So thankful for all the comments and prayers, truly touch my heart:) blood count came back up on its own, and guess what dropping slowly but surely. I have to be put back on steroids,  and nope not happy about it. If I don’t take them it could do more harm then anything,  but honestly I believe it make me sick at same time. I hope I can get some rest in a few.  I believe I shall wrap it up and try get comfortable.  I  have had some good nurses dis time around,  which is a plus. I hope all is well with each and everyone of you all.  God Bless