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.
How can I speak…
when I’m only one
You seem to look…
at me crazy…
Cause of the pain.
and you don’t understand…
I’m one in a million…
So many of us or losing.
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.
Do you hear me?
I hate to yell but hell.
my pain is that intense…
We want Justices…
We are tired of been
some die in pain…
because of the abuse from
who supposed to help us.
Do that make you all happy?
see so many dying?
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
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. 🙂
Hey and Welcome to my world. It’s been few weeks since I wrote update. Every since then it’s one thing after another. Last month I ended up in hospital three times. Got admitted the last visit. I ended up with flu, due to someone sending they sick child to school and passing it to my niece. Please for the love of God, stop sending sick kids school. The first visit was negative, was running fever of 103. They didn’t keep me but sent me home. Oh yea they wanted to say UTI was the case of my fever and pain. Guess who got worse and had go back. Check for flu, and won it. Seciously I wasn’t please. They didn’t check anythingelse. Couple days later woke up with chest pain. Praying it go away but no can do.I had go back and let me tell y’all I waited four eyes in lobby. They wanted say of her pain from her uti that’s why they didn’t take me serious. I had keep myself calm. It wasn’t busy I arrive lil after 4 in morning. I had to make me way to register just to see why the hold up was. She was like they trying get room. That was lie when so many people was coming in and out. I had let her know I came in with chest pain and back and leg. When you having chest pain they suppose take you to the back. She made call to back and few mins later I’m called back. Guess what? No ekg, x ray, pain meds. Nothing. They tried cAll me back earlier for labs but they know in my file says port since hard to stick. Oh I went back but she miss and she didn’t understand why they wasnt doing port. Got port excess finally after they call me. Labs drawn, order fluids and antibodies. Here they come with tordal. Had wait 3 more hours to I got room. My count had drop more and so retic was high. Only way find out cause tech came to type and cross me. Oh yea when so call nurse practitioner came in she was like we may send you home. I’m like wdf. No ma’am. I was just shock on whole treatment, but you know what I shouldn’t be. That’s how sickle cell patients get treated. It’s bad enough we dying like no tomorrow, because so call doc and nurse practitioner not doing there job. Once on floor still no pain meds. Had keep praying and staying calm because that just how much I was hurting. Finally got meds but pill. Takes pill longer to work. I had been crying and praying. Three hours later my nurse return and says I find you doc that had you before and prescribe me my usual meds. Praise God! She got my meds and doc comes in and I tell him what’s going on and that I didnt get ekg are x ray. He was shock and order ekg asap. I could had acute chest. Thank God no acute chest. They did ekg two days in row and x-ray the next day. I had four day stay. I ended up getting blood, because counts drop. Blood came day earlier and let me tell you I was happy hear it. It was my first hospital stay for 2018. I only had two last year because I truly gave up on medical field. Back in October I was in week and day.
I tried to give hydrea a try again.( if you wonder what hydrea is, its cancer meds but sickle cell patient could take it to lower crisis and hospital visit). I couldn’t do it. I just didn’t like the outcome. It brought my counts up, but I started to have chest pain and I couldn’t take it. It’s my body and I’m the one dealing with outcome. I had mention about chest pain and she was like I never heard not giving people chest pain. Lets just say I did my own research on meds. Had doc appointment today and she mention a new meds just for sickle cell patient. It comes In the mail. I plan on posting about it once I start taking it. I’m praying I didn’t leave anything out. Until next time. God Bless:)
As 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 🙂
I pray all is well with each and every one of you. I hope y’all having a good Holiday. I know I been away a lot. Every time I think I’ll return, something comes up with my health. I have bn having crisis in my hands for a month now. I’m right-handed and that’s the hand that been giving me trouble lately. I did have a good Thanksgiving. I know awhile back I had mention a death in the family and soon after we lost someone else. Its heartbreaking when you lose you child by another person hands. I wont go into detail about it. Ended October I was admitted, I was really sick. COunts had dropped tremendously . I haven’t bn that bad in over a year. I couldn’t walk and lets just say not talk either. I did a lot of crying and screaming. I was in hospital for over a week and few days. I can’t tell you when the last time my sickle-cell had me down that long. Im pretty sure if I read thru my blog It would let me know. I had to have two units of blood, I was running fevers but no infection so they say. Im just so thankful I got the blood. It had bn awhile since I had blood. Im thankful for that. God is truly good all the time. Im hoping to be back soon if not before year out. Making 2017 my year . I miss blogging and writing as well. Thank God for voice.. I hope to fill y’all in with more update soon. Right now Im in process of looking for new place. So we all know how that can be. I hope to catch up on blogs . I have read each and everyone of your comments, just haven’t had the time to accept and comment back. I love the holiday to be able to spend with my family. Thanksgiving and Christmas. Christmas I love the movie I get to see since end of October. I spent the whole week of thanksgiving with my love. She is growing up so fast. where does the time goes. Im hoping to return to my love journey post very soon. I so miss them but have bn saving my thoughts to share with you all. Im hoping be able to try to get something publish in the new year, only God knows. Until next time I pray all is well with each and everyone of you all. Merry Christmas and Happy Holidays. Please do be safe and remember to let your love one know you love them every chance you get. Never know when its your last time on Earth. I don’t know it seem like every time someone look around someone losing someone. So I had mention it. God Bless
Quotes App: http://bit.do/quotesapp #quotes
Dis quote says so much. Asnof yesterday morning I was admitted due to bronchitis and it sending me in crisis.
Good Morning, I pray all is well with each and everyone of you all. I’m sitting here at my eye appointment waiting be seen and wanted to check in with you all. Wow spring is finally here and the weather being a little crazy over my way, how about y’all? I have been doing schedule post when I know I’m not going have the time to do it a day. They truly come in handy when I’m not at my best. But not all my post or schedule. I made a error dis morning and it took my schedule post back to the 9, sorry about that y’all. I’m hoping today appoint go well, my eyes being giving me problems and I have to have dis done once a year to make sure my sickle cell isn’t doing major damage. Lately I have being hearing how so many sickle cell warriors or dying. Always hit me hard, when I hear heartbreaking news. I know one day I’ll be call home. Every day is a struggle when it comes to my health. Some days I dont want get out of bed. Some days I want run away from a dis. Some days I just give it to God and continue my fight . I may be strong but I do get weak at times and discouraged. Okay I’m getting carry away here. I’m hoping have a post dedicated to dis soon. Till next time pray all is well…
I recently have learned a life lesson on what my words could do to someone I truly love and want in my life for along time. On dis Love Journey it’s hard to acknowledge just what a person is feeling when it comes to you and your needs. I have been in love with a guy going on 12 years off and on. We finally got the chance to really get to know one another but I still keep my heart guarded because I feel he does the same. I’m a very sarcastic person, and I thought he could tell the difference. No matter how long you know a person, you still have be careful how you word things. You can lose them or push them farther away and have to work getting them back to where you work so hard to let there guards down.