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.
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
What a powerful message, with sickle cell were always told what we can’t do. Growing up I use to push my limits and pay for it at night. Why do we always let people say what we can’t do, when we can do whatever if we put our mind to it.
Keep on defying the odds. You were born for this!!
Good Morning, God is truly good all the time. I pray message speak to someone soul/heart. It sure speaks volume to mine. 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:)
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
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
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
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.