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

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

Posted in 2017, family, My Journey, My Life, poem, Poetic, Poetry

Fathers Day

Oh how much I’m thankful for you
Almost lost you.
Still, see you as my hero
Your my rock
Some days you drive me crazy
But your my ole man
I love you dearly
You were there when I was sick
When I had hip surgery
You stayed with me
Push me to get better so I come home
You the man
That’s showing me the kind man I need
Today is all about you
We honor you
I love you to the moon and back
Happy Fathers Day!
6/18/17
By: PJ

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

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 

Posted in 2017, My Journey, My Life, Update

Coffee…

The day I stop drinking coffee. Oh, how I miss you. So yummy and hot, the smell of French vanilla cream. I miss the taste of you. I believe I’m struggling with not having a cup every morning. I even miss read a product that was obvious for the shower, and I was using it like it was lotion. Can I truly be leaving my caffeine coffee and turning to no caffeine tea? Believe I’m losing my mind, thinking tea can replace my first love.  My days seem to pass me by like it’s nothing. Does cutting coffee cold Turkey interfere with your memory.

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

Living With Sickle Cell Anemia

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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.

Posted in 2017, Cancer, Faith, family, God, Health, My Journey, My Life, Sickle Cell Anemia, Update

Update

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Hey and welcome to my world. It has been awhile since I posted an update on what’s going on. I had doctor appointment Friday morning, and miss it due to a blowout. But thankful we didn’t get hurt.  We got someone to help us change the tire, and then the spare was flat. We had to put air in it and made out a way to tire place, to get the two front ones replace. I was two hours late, and they were gone from the clinic. I was so ticked off since I hadn’t been feeling my best whatsoever. I was glad to get my labs when I call the number they gave me. My counts were so so. I was surprised it was high as she said, but she said it was low for the type of  Sickle Cell, but retic was high. Now I know why I been having the darn headaches I hate. What a way to start your birthday.  I know I mention in few update post on finding a new primary doc, well I have and can’t wait to meet her. I have never had a woman doctor. I had them while in hospital but not as primary or sickle cell doctor. I shall keep you’ll post. My dad had a test the same day I had a doctor appointment to see if the treatments are helping and he just find out Tuesday when he went back for his treatment. Let me tell yall God is truly good all the time. Not just cause he got good news but just cause it has made me realize not to take love ones for granted.  I hope everyone is doing good and in good spirits. Remember to let your loved one’s know you love them before it’s too late.  I know it’s not much of update since my thoughts are everywhere.

 

 

Many Blessings to you all… God Bless:)

Posted in 2017, Children, family, God, Love, My Life, poem, Poetic, Poetry

Happy Birthday

 

Today is your day.

We are celebrating you…

I hope you enjoy your day

God has made for you.

I can’t believe you not a baby

anymore..

Today you turn 9,

where has the time gone?

I remember when I use

to wake up in the middle of

the night, when you’re cried….

You are my love…

Today is your day…

We are celebrating you…

Your day is today…

Happy Birthday baby girl

Auntie loves you…

~PJ~

5/14/17

Every year since she been born, I try to write a poem dedication to her. Time truly flies.

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, Cancer, God, Health, My Journey, My Life, Sickle Cell Anemia, Update

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

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

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