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

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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 2018, AWARENESS, God, Health, My Journey, My Life, Sickle Cell Anemia, Sickle Cell Awareness, Update

Update

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 2018, Cancer, change, Christian, Faith, family, fight, God, Update

Update

Hey, and Welcome to my World. Where should I start, I have tried doing update post since October when I got sick and ended up in the hospital for over a week. I even tried before the holidays. Almost had another hospitalization but I push through it. Two years ago in 2016, we got news my dad has cancer. What a blow to us. Many things ran thru my mind. Was severe was I going to lose him. How will we handle this as a family? It was a rough year and we made it. Two different treatment, the first one wasn’t helping. The second one well I did for a while made it smaller but when he went to check up at hospital nothing has changed. He on blood thinners but since he seems to be losing more blood they change his doses. Hope it helps. His getting transfusion every other week for past few months. Y’all know I know about them when dealing with sickle cell. I’ll make a separate post on me later on. I have learned so much about this blow. No matter what get throws at you. You can make it with faith, prayer. Things get rough but never give in to devil evil tactics. Some days my dad reminds me of me when I have to push myself when I’m hurting. I see aggravation at times, motivation to get better and fight. The different things we go through when dealing with health issues. We not only got hit with cancer, we also got hit with him having heart problems. Not just one blow but two. God knows how slow you down at times. Going end it here and hopefully finish with rest of update. Pray all is well who reads this. 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, Death, fight, Health, My Journey, My Life, Sickle Cell Anemia, Sickle Cell Awareness, Update

Rant and frustration

Hey world, 
And welcome to Poets Afterthought, as you all know especially the ones been with me a long time my name was a poetic journey, it’s still my journey. I have sickle cell and been dealing with it all my life. But im truly tired of how we get treated when we go to the Emergency room. Some doctors shouldn’t have a license to treat patients, same goes with nurses. I done had my fair share. I usually keep quiet and don’t say what truly go thru with when I go. I’m just sick and tired of us dying because they believe oh she\he look good. Oh, they count fine, send them home. Basically so we can die and never be seen again. I could go on with the mistreatment we receive. I rather suffer at home than put up with bullshit doctors and nurses.  I know by doing that I’m only hurting myself. I was watching video yesterday and it broke my heart, we have lost another warrior. We are not getting proper treatment. Point blank, we basically get screwed. Some times I have waited over 6 plus hours in the waiting room just to be seen. Plenty time for us get worse and die. I done waited a long time as well in the room after been call to back, so I could be seen by a doctor. Hell, half the time they run around chatting and joking with one another. I think it’s ridiculous for me to have been half dead are near death for them to do they damn job. I’m sick and tired of the mistreatment. If only they knew what we feel they would have more compassion. Just find out we lost another person. Some of these doctors and nurses still think it’s black disease but it’s not. I had to get blood work recently and had to get port access. One tech who they love call to try and stick me, knows I’m a hard person. Well, she just told me in my file it says to access my port. I’m wondering why these idiots not trying to do their job correctly, but rather put me thru more bullshit than my body can take. It’s sad when you have to pray that you’ll have a compassion doctor to actually do what need be done. How are we going fight when it seems the ones who suppose help us is letting us die. 

Posted in 2017, AWARENESS, Cancer, God, Health, My Journey, My Life, Sickle Cell Anemia, Sickle Cell Awareness, Update

Update

Good Morning, 

Where do I start, I have been out for almost a week. Still, not my best was glad I didn’t need blood. So that’s truly one good thing. I had a doctor appointment with my sickle cell doctor that Friday. Let’s just say they weren’t happy how I got treated at the hospital. My counts were worse than when I arrive. I truly believe they were trying to make room for other people be honest, that’s not a big hospital and truly not the best. I had some great nurses. I’m so thankful for all y’all prayers and comments.i have read them just hasn’t had the time to approve and respond. I have been working on schedule post for the days when I’m not at my best. Some days are better than others. Today is the fourth I pray everyone has a safe and bless one. If you don’t celebrate trust I do understand, just enjoy your day. I know I haven’t mentioned my dad in awhile, next week he hopefully takes his last treatment. Back to update at doc office, let’s say they weren’t happy that I got discharged so early. All I know wouldn’t want drive is ride a long distance when I’m in pain. So uncomfortable.  But I may have to keep that in mind, my health comes first. Seems when we try to do what we need do, we still can have mishaps and get sick. No matter what we do, things will happen to shake our world. I pray all is well with who all that lay they eyes on this message. No matter what you going thru, don’t stop. Push and push some more. God Bless

Posted in 2017, My Journey, My Life, Update

Coffee…

The day I stop drinking coffee. Oh, how I miss you. So yummy and hot, the smell of French vanilla cream. I miss the taste of you. I believe I’m struggling with not having a cup every morning. I even miss read a product that was obvious for the shower, and I was using it like it was lotion. Can I truly be leaving my caffeine coffee and turning to no caffeine tea? Believe I’m losing my mind, thinking tea can replace my first love.  My days seem to pass me by like it’s nothing. Does cutting coffee cold Turkey interfere with your memory.

Posted in 2017, God, Health, My Journey, My Life, Prayers, Sickle Cell Anemia, Sickle Cell Awareness, Update

Living With Sickle Cell Anemia

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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.

Posted in 2017, Cancer, Faith, family, God, Health, My Journey, My Life, Sickle Cell Anemia, Update

Update

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Hey and welcome to my world. It has been awhile since I posted an update on what’s going on. I had doctor appointment Friday morning, and miss it due to a blowout. But thankful we didn’t get hurt.  We got someone to help us change the tire, and then the spare was flat. We had to put air in it and made out a way to tire place, to get the two front ones replace. I was two hours late, and they were gone from the clinic. I was so ticked off since I hadn’t been feeling my best whatsoever. I was glad to get my labs when I call the number they gave me. My counts were so so. I was surprised it was high as she said, but she said it was low for the type of  Sickle Cell, but retic was high. Now I know why I been having the darn headaches I hate. What a way to start your birthday.  I know I mention in few update post on finding a new primary doc, well I have and can’t wait to meet her. I have never had a woman doctor. I had them while in hospital but not as primary or sickle cell doctor. I shall keep you’ll post. My dad had a test the same day I had a doctor appointment to see if the treatments are helping and he just find out Tuesday when he went back for his treatment. Let me tell yall God is truly good all the time. Not just cause he got good news but just cause it has made me realize not to take love ones for granted.  I hope everyone is doing good and in good spirits. Remember to let your loved one’s know you love them before it’s too late.  I know it’s not much of update since my thoughts are everywhere.

 

 

Many Blessings to you all… God Bless:)