Posted in AWARENESS, chronic illness, God, Health, Heart, June 19, knowledge, life, My Journey, My Life, Sickle Cell Anemia, Sickle Cell Awareness

World Sickle Cell Awareness Day

Today is Sickle Cell Awareness Day. I know I have mentioned it so many times on my blog and the different things I go through with dealing with this disease. Lately, all I see on Facebook is how they are getting treated. Some of yall may have never heard of the disease. Well, today is the day I explain what it is. If you want to know more keep following me on my journey and google as well. I never thought people would care about what I go through.

Whats sickle cell anemia.
It’s an awful hereditary blood disease. You can be fine one minute and the next you not. Years ago we didn’t see the age of thirty. Wow what a mighty God we serve, some may not see that age today and some are seen age all the way up to there 80s. When in crisis is turns your blood into crescent making it unbelievable to move because of oxygen not reaching that area. Normal blood cells look like doughnuts. Let’s be real for a second this is a dangerous disease it affects all your organs. Since its heredity disease. It can affect all your kids are just one or two. My parent had five of us, only two of us was diagnosed with this disease and the rest trait. They didn’t start testing babies to till the late 80s. For some many years, I was told and so many around us that sickle cell was a black disease, I believe it to join sickle cell groups on facebook. Wow, the many faces behind this evil disease showed me the truth. Since 2008 they have recognized sickle cell as a global public health priority in order to raise awareness to sickle cell. With that been said its still not much awareness. So many people still don’t know what sickle cell is. I hope by joining my journey it opens someone eyes and hearts up.

Posted in 2014, 2018, AWARENESS, Death, fight, God, Journey, My Journey, My Life, poem, Poetic, Poetry, Sickle Cell Anemia, Sickle Cell Awareness

Warrior

So many fighting diseases behind
Close doors…
Breaks my heart to hear
So many losing the battle…
You see our smile,
But not know our pain.
Fighting to live.
Holding back tears
So many warriors dying
From sickle cell, lupus, ms, cancer
And so many other diseases…
I never consider myself a warrior
Warriors coming out the closet
And letting the world know
I’m not a shame, my disease isn’t me.
Warriors are the ones,
Who keeps moving when the
The world has turned there back on us…
Warriors
Keep marching to our heavenly
Father call you home.

4/10/14
PJ

Dedicated to so many falling warriors. Quit judging when you don’t know the whole story! God Bless. Feel as if I can add more.

Wanted to share it again for the month of September to bring more awareness to sickle cell since it was sickle cell awareness month. But as many of you may know I try to share it much as possible.

Posted in 2011, 2018, AWARENESS, fight, God, Health, My Journey, My Life, poem, Poetic, Poetry, Sickle Cell Anemia, Sickle Cell Awareness

Scar

My scars
Tell a story
Some may think
Im addict
Im not Feenin
For drugs
Im Feenin
For nomore pain
My scars
Tells a story
Of me fighting
Sickle Cell Disease
My life
Is not yours
God gave me
This life
To share it and hopefully
Educate the World
On my illness
My scars
Tells a story

12/13/11

PoeticJourney

 

I have shared this poem before and wanted to share it once again. This month is sickle cell awareness month.  With so many of us dying each and every day. I had to the need to share it one more.

 

Posted in 2018, Blessed, Blogging Anniversary, My Journey, Sickle Cell Anemia

7 years

Wow, I been here for seven long years a few breaks here and there. I started my blog when I was in college and wasn’t sure what put on my blog. With help of a lovely male nurse. He gave me the idea to spread awareness about my illness. I thought about blogging about my degree and what made me go that route. After going in and out of the hospital in my early 20’s I knew the world needed to hear my story. I never thought people would actually be moved by my story dealing with sickle cell. Hell, I didn’t think anyone would care to be honest. So many times we tend to keep our demons to ourselves because we scared what others may think because they don’t understand the struggle. I see i have made the right place by making WordPress my home to share my story and so forth. So thank you to each and everyone of you for making me feel welcome and joining my journey. Many Blessings. 🙂

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, fight, Journey, My Journey, Sickle Cell Anemia, Sickle Cell Awareness, Update

Update

Good Morning,

Hey World, it’s been awhile since I posted.  I have been resting and spending time with family as well as clearing my head with different things going on. August wasn’t a good month for me. I had to make er visit and let’s just say it wasn’t good whatsoever. Had doc appointment following week. Er, visit what can I say, it was hell. They wouldn’t access my port, are oxygen is given me fluids. I got stuck like 6 times just so they could get my labs. I got a pain shot and let’s just say it didn’t work. Finally, after waiting and being in pain they wanted to access my port and give me fluids.  Retic was high but counts was somewhat OK and not truly explaining why i was in the pain I was in.What the hell. I rather suffer then step foot in er.  The following week my counts wasn’t good. If they had did they job right the first time. I decided to tough it out because I’m never prepared when i have doctor appointments.I didn’t think my post on rant and frustration got much attention. But wow Twitter and here has been going off and on. I guess my words are reaching people. September is sickle cell awareness month, I have been debating on sharing. Frustration knows how to get you. I got tired of reading are hearing another sickle cell warrior has died. I even got to the point I didn’t want get close to anyone else. Yes, I know we all have die.  Coming to term to enjoy life, and not worry about death. I pray all is well with each and everyone of you all. 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 2015, AWARENESS, fight, Health, My Journey, Sickle Cell Anemia, Sickle Cell Awareness, Thoughts!!!!

Living With Sickle Cell…

image

Am I really living? Came to conclusion Im not. I have stop doing the things I love. I have stop moving to my frustration to be better. I realize its time get out my comfort zone! Enough is enough. If we dont live now , we wont
be able live later 

Just wanted share some thoughts that bn on my mind lately. Stop letting stuff hold you down. Release anchor from your life and live.

Dis my month shine: Sickle CELL AWARENESS MONTH.  . I have bn in out hospital for about a month.. .Till next time do stay bless;)

Posted in AWARENESS, My Journey, Sickle Cell Anemia

Living With Sickle Cell Anemia

No, I’m not in the hospital, I use numbers and count the days when I’m in hospital. Since I have been out, I haven’t been feeling my best. I’m trying not to stress because hey we all know what stress can truly do to our bodies. It ain’t pretty sight! I’m more worry about my blood count then anything right now.  Its been long time since I haven’t had to get transfusion, my count wasn’t all that high. I’m use to leaving hospital with either high 8 or 9 and last month it was 10. It kept going up to even when I visit my primary doctor. When I did visit the hospital the first time it was sort of high 8, but it drop to low 7 since I was in so much pain and it was going up to it reach 7.8 then a little bit more. So you think I should be, NEGATIVE. So since I’m not feeling my best, I was told to make a doctor appointment with my Primary Doctor. I already knew that wasnt going to happen, since I can get to his office on time and still be in there for almost four hours if not exactly four hours. If you wonder what the heck he be doing, you truly not alone. So I made the appointment with  my hemoglobin doctor. If I have to get transfusion, I plan on going for the port ASAP, I can’t take no more sticking and poking.

 

I started my JOURNEY with sharing my illness with ya’ll because I wanted to spread more AWARENESS on my illness. I must say I haven’t done a good job at all. Seems either I’m sick or school or you know we had the lovely holidays last year. I know I still have to do a post to explain what exactly it does and you know all that good stuff. I know everyone doesn’t know what it is exactly. I believe before I continue sharing my illness, I should share a post about it, and do trust me its coming very soon. I’m still struggling with catching up with my studies and staying on top of it. I hate when I’m behind and it takes forever to catch up, seems like that all I’m doing to be honest and its showing in my grades. So not happy when I’m so close to been done with my associate degree. I plan on getting my bachelor once I graduate. Off the topic, but wanted to share that little bit info with you all. I do hope everyone is having a BLESS Day/Night! God Bless

Posted in AWARENESS, My Journey, Sickle Cell Anemia

Awareness

Am I wrong for wanting more Awareness for Sickle Cell Disease? I was recently talking to someone about my illness and she was like I didn’t know you had it and that she didn’t know much about it but wanted to know more about it. How can I spread the word about it and not get to emotional about not having much Awareness for my disease? I want to be Advocate, to be one that mean I would have to open up more about who I Am, and How I am living and dealing with it for over 20years? I didn’t know about we had a month of Awareness, to have a month but not really hear much about it bothers me. But someone had told me they heard about it and saw a few things as well.

To live everyday and to be in pain a majority of your life sometimes getting to the point and just being  unbearable. I smile on days I wanted to cry and just wish I wasn’t here anymore, but I knew it wasn’t my time to go yet. I know I haven’t blog much about my illness. I have been doing research on it for my English paper, so I have been learning new stuff each and every day. When I decide to spread more word on the issue I don’t want people  thinking I don’t know what I’m talking about. I know I haven’t made it back to explaining what it is yet.

You’ll see more on these topic of Awareness, it’s time for a change and I’m on my way of making it happen in due time. Right now days have been hard due to  my headaches getting the best of me at times.

GOD BLESS,

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