Tag: sickle cell

Posted in 2022, AWARENESS, chronic illness, Death, Health, life, My Journey, My Life, Sickle Cell Anemia, sickle cell disease, Update

Update

Posted on by poeticjourney

Good Moning, It’s been a while since I posted. I do pray all is well with every one of you and thanks for joining me and sticking with me thru my silence. I have been struggling since losing my ole man (dad) and my illness hasn’t been the best. I have been out and in about every month and sometimes twice in some months. I must admit surprised I haven’t given up yet. I have been writing a little here and there. I have been thinking about coming back and every time I do I never know how to start my post. seems every time I say I’m coming back it’s an update and then something happens. Life is funny like that, to be honest. The last hospital visit was a week and two days. it’s funny because I was doing good without going to the hospital or been putting in. My third month showed me doesn’t matter how you take care of yourself. Sickle Cell wins. I can take meds and do stuff like I’m supposed and still it wrecks my life without remorse. I haven’t had the chance to take my trip since June which was for my bday month before. I suppose life is funny that way. Covid doesn’t help much either. I must say I’m glad I haven’t and pray I never get it. My thoughts or everywhere. I do pray all is well with every one of you. As of right now the doctors and I or working on a way that I can stay put in the hospital. I have a home nurse that will come out to see me if I need her. It’s crazy how life slows you down when all you want to do is run away and don’t look back. It’s a holiday and my ole man’s birthday is this month. Lord, I miss him so damn much. It still feels fresh and it’ll be three years on the worse month possible. A hint: I hate Father’s Day, hell the whole damn month. Grief is a hella pain. The memories aren’t the same. I can’t hug a memory. I can’t pick up the phone and call just to hear their voice one more time. At this moment, not feeling my best. the weather is getting cold so that could be the reason. I and my body have a love and hate for it.

Questions for ya’ll. How do ya’ll handle grief? I havent fully grieve because of making myself sick. I grieve a little each time im in my hospital. Might as well since Im already sick. I honestly dont want to hear its going to get better. I dont beliee that. I have some people who lost there father longer then I have and they still grieving. Do let me know what ya’ll have done to make it little easier. Many Blessings till next time. I pray its not months later.

Posted in 2021, Journey, My Journey, Sickle Cell Anemia, Update

Life Update

Posted on by poeticjourney
MISSED YALL!!!

Good Morning/Afternoon/Evening. It’s been a while since I posted and must say I missed it and y’all. Every since lost my dad I have been lost and drowning and was so angry.  It’s been a year unfortunately and he still not here with me. All I have left are memories. Thank you all who stuck with me and newcomers. I have been missing writing and visiting y’all. I have been writing here and there, just clear my head. But not on here. It says I have been blogging here for 10 years. Wow, that’s been a long time. Word press truly became home for me.  It has become a place for me to share my journey with my illness. The good and bad. I never thought I would touch so many people live through my experience but I have.  It hasn’t been easy. It hasn’t been easy since my dad been gone. I don’t have him here anymore to pray for me and talk to me and just be here. I haven’t truly grieved so I do it Lil bit every time I’m in the hospital. I thought about blogging each time I’m in but never have the energy to share anymore. Hoping to find my way back to sharing more of my life and read about y’all journey. I pray y’all are well and covid hasn’t got y’all down and out. Do enjoy y’all summer but make sure to drink plenty water. It’s hella hot in south. Pray all is well with each and everyone of y’all. God Bless

Posted in 2020, AWARENESS, Health, Mini Update, My Journey, My Life, my story, Sickle Cell Anemia, Sickle Cell Awareness

Blog Update

Posted on by poeticjourney

Good Afternoon, hope everyone is good and well. As things have changed so much. And seen how so many warriors or saying due to the treatment. I have decided to make a Facebook page so I can share my story and others who give me the ok to do so. Soon as I’m done with the page. I didn’t realize how much work just making another page and the naming process. I have come to the conclusion we need to be heard and if doing this and not been quiet about the treatment or care I get. How will we be heard and how will y’all know my journey and understand just what sickle cell is. A change starts with me not been quiet and hurting in silence.

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

Living With Sickle Cell Anemia

Posted on by poeticjourney

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

7 years

Posted on by poeticjourney

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, Health, My Journey, My Life, Sickle Cell Anemia, Sickle Cell Awareness, Update

Update

Posted on by poeticjourney

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:)

Posted in 2017, fight, Journey, My Journey, Sickle Cell Anemia, Sickle Cell Awareness, Update

Update

Posted on by poeticjourney

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, God, Health, My Journey, My Life, Prayers, Sickle Cell Anemia, Thankful

Day 2-3, Living With Sickle Cell

Posted on by poeticjourney

I’m still in the hospital and in a lot of pain. At one point I truly thought, I was getting better, but that’s negative. I haven’t got much rest to be honest.  I started working on the post yesterday, but my body wasn’t having it. Some days I just felt defeated. I haven’t gone 7 months with no hospital stay in a long time. It’s being awhile since I gotten sick. Honestly, we know our body better than anyone. With all the rain we have been getting, I’m not surprised on the way I been feeling! I’m still trying fight the sleep. You know as a child we hated to go school. I pray who all were affected by Tropical Storm Cindy, made it out with no harm.  My count seems to be playing with me big time. Drop all the way 7.3 and following day it comes up to 7.6. I’m feeling much better than I was, which I’m very thankful for. We a lovely visit from my Lil Lady, she had been texting me saying she misses me. That visit I truly needed to brighten my day.  Thank you all for the prayers , it truly means a lot to me. God is truly good all the time. No matter the situation, good or bad. Going end post here since I’m hurting . God Bless