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.

Advertisements
Posted in 2019, AWARENESS, chronic illness, Health, Heart, Mini Update, My Journey, My Life, Sickle Cell Anemia, Sickle Cell Awareness, Update

Living With Sickle Cell Anemia

Hello, and Welcome back to my world. What a day I had. What I hate about doctor offices is to wait. I did mention had an appointment both days. Let’s just say Monday was a waste of time and gas. They went prepared for my arrival and didn’t want to see me because they didn’t have paperwork from the hospital, which I didn’t understand. You knew about for over two weeks. Always away from that. I arrive on time for both appointments. They did apologize but still, I was not happy. You are my primary doctor so it wouldn’t kill you to finally see me in person. Nope, I see my other doctors more then I see primary. Haven’t even met her yet. Yea something wrong with that pic big time. My sickle cell doctor was the most important for me to see. I had called in the week before explaining to them what had happened when I was in the hospital. I wanted blood work and wanted my results. She set everything up for me. Soon as the appointment was over went next door to the hospital to get labs drawn from my port. So back to my appointment, hadn’t been seen since Feb. She was like you good. I know I haven’t mentioned here before. I have changed my diet. I went keto and it has helped me a lot. Kept me out of the hospital. Lost over 60lbs. When on chemo meds for my sickle cell I had gained weight and couldn’t lose it. Then the new meds for sickle cell. It was making my head and back hurt. And I couldn’t deal so I stopped it. I had to first help myself and I have done just that. I honestly did my research for about 4/5 months before I went for it. I don’t have a gallbladder. Anywho back to my appointment.she check my heart and says sounds good. She asks me about meds she wanted me to start last time for my kidney. Told her I hadn’t started it yet. Since my body is doing overtime then a person without sickle cell. So she changes the mg since I’m smaller and started it last night. Never happy about trying a new medicine. So next visit we will see how everything looking. I’m putting it in God’s hand that everything is good and I won’t have to take it forever. I was glad I didn’t have a long wait for a tech come do my port. She was a nice woman and we talk while she did it. I always like to get to know whoever is dealing with me. I hate for my port get infected. I finally got my result around 5 and no new antibodies praise God. White counts were good. Retic little high but it’s be expected since my counts 7.6. It’s the best but it for sure not the worse. Praise God. Also, find out my bones in my back are deteriorating. It explains a lot when I’m going into crisis. Just a few days ago, I couldn’t move because I was hurting so bad. I read other sickle cell patients having the same problem. But so wasn’t expecting I had it. With so many people dying from my illness. I want to share my illness with y’all. Until next time pray everyone doing good. Stay Bless

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.

Posted in 2019, chronic illness, fight, Health, My Journey, My Life, poem, Poetry, Sickle Cell Anemia

Join My Fight

Trying to make you mine
Want you on my team
I need justices
Are you going to help me
I’m trying to live my life
But nobody seems to want
Help me
We need justices
The systems not for us
All I’m doing is, trying to live my life
So my question
Are you going to help me
Too many dying at home
Cause we not been treated right
When we come in
I need you on my team
I want to live.
You my choice
Please don’t let me down
I want to live
I heard you the one
That fight for us
I want to live
Can you be on my team

4.19.19

~PJ~
Day 22. It’s been a while since I did update on some of the stuff we, meaning other sickle cell patients go thru. It breaks my heart, read some of the treatment others get. Since changing my diet, my treatment has changed. It has got better, but at times I worry if I get the proper care I need when I go into E.R. anywho another story for a separate post. Just in case you wondering this poem goes with my life.

Posted in 2014, AWARENESS, chronic illness, fight, Health, My Journey, My Life, poem, Poetry, Sickle Cell Anemia, Sickle Cell Awareness

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 ours.

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 are tired of been

mistreated.

some die in pain…

because of the abuse from

the ones…

who supposed to help us.

Do that make you all happy?

see so many dying?

~PJ~

Technical I’m not finished 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 a cure for us.

Day 19. Something I wanted to repost again. I can’t believe I didn’t add a date it was written. Do enjoy and God Bless

Posted in 2019, chronic illness, God, My Journey, My Life, poem, Poetry, Pray, Sickle Cell Anemia, Sickle Cell Awareness

Let Me Go

Let me Go
I just want to be free
To get some rest.
To just live my life
I’m tired of hurting.
I’m tired of the pain
Waking me up in
The middle of the night
Making it hard to move
I’m Praying to God
And hoping
I’m not going into crisis.
I don’t have time to be
Down in my body
Just let me be.
I got things to do.
Weather doing its thing
Bringing me down
All I want to be is free

4.17.19

~PJ~

Day 17. Living with sickle cell is no joke. I haven’t been feeling my best lately and wanted to share a poem dedicated to my illness. Enjoy and God Bless

Posted in 2019, chronic illness, Health, My Journey, My Life, Sickle Cell Anemia, Sickle Cell Awareness

Living With Sickle Cell Anemia

Hello and Welcome to my world. Today isn’t a good day. In a lot of pain and hurts to walk. I was hoping I wouldn’t have to make ER visit, but the pain has got the best of me. Make it hard for me to walk. Got to the point when I did get out bed, pain shot up and had to wait to it calm down some. After debating with myself I decided to go. Maybe with the help of my parents telling me to go before getting worse. Finally got dress, that took almost 25 mins since I was hurting. I had a long wait. I was praying wouldn’t be full, but that wasn’t the case. The pain was getting worse while I waited. Think about 2.5 hours or more before they call me to the back. I was glad to get on the back side where I knew to get better care. I had Richard who’s my favorite and know how to take care of sickle cell patient. I had a woman in register said she misses me because she used to see me so much. I thought that was funny, and told her I switch my eating habit and that has helped a lot. With the cold weather, we having made it hard to stay from hurting. I had good nurses. It truly helps when you have a good team helping take care of you. My counts want the best, and the retic count was high as well. I had three does before I was discharged. I knew I wasn’t 100 percent but didn’t want to be admitted. But the body was still hurting but did help to sleep majority the next day. I wasn’t getting much rest. As of today, it’s bn a week and day since her visit. I’m still not my best. I’m doing everything to keep calm and rest as much as possible. I refuse to go back, but if I have to go back. I might its been a while since I been admitted. Almost a year come in May. Living with this illness take a toll on the body and the person but as well as the family. Until next time hope everyone staying warm. God Bless

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 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?