Update

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

Posted on 13 Nov 202213 Nov 2022 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.

2022, Journey, Mini Update, My Journey, My Life, my story

Update

Posted on 8 Mar 2022 by poeticjourney

Hello and welcome to my world. It’s crazy and it seems that all I have been doing lately is updating y’all on my life. I’m trying to do better. Sometimes life gets hectic and we forget certain things. I have my moment I want to shut down. I have been told I need to start writing again. I believe it’s the hurt and anger in me that’s destroying who I was. I’m a time bomb ready blow. Why not just share my thoughts and journey with y’all. I was told who knows who I may touch. You don’t realize who affects you till you hit hard there not here anymore. I have written here and there. Break down every time. Idk how to do this journey anymore. So bare with me while I walk this journey. Some days or rough days aren’t good. I even started back walking again and it’s been helping me. I didn’t realize how much I needed it. I did go back to keto to help keep me healthy and out of the hospital. My doctor’s appointment went very well. My blood pressure was good and so was my heart rate. And let me tell you, your girl took the stairs, I don’t do elevators long as I can prevent it. Well, pray everyone is well and bless. God is good all the time. Bless

2022, Health, My Journey, My Life, my story, Sickle Cell Anemia, Sickle Cell Awareness, sickle cell disease, Update

Update

Posted on 24 Feb 202224 Feb 2022 by poeticjourney

Hello and Welcome to my world once again. It’s been a while and a lot has been going on. I don’t know where to start but I have been in and out of hospital almost every week. They weren’t listening to me. But I believe I’m on the right track now. I do have a check-up coming on in a few days. I truly had some good doctors that took the time to listen to me. Listen so good they made sure I was seen this week. It’s a blessing when God put the right people in your care. This month has been rough for me. I know for a fact, I’m not ready to stop living. So it’s time to fight.

I have been having trouble with my heart rate getting high for no reason. Then my blood pressure got high as heck. 175/100. I was going thru it, to be honest. I wasn’t stressed The only time I would stress is if certain people would call with nonsense about stuff I can’t do anything about it because I’m sick. It’s crazy how they want to bother you when you are down? Anyways my counts ended up dropping and had to have blood. Just thankful it didn’t take me long like a month or two ago when dropping to 5.4. God knows how to slow you down. I truly have lost my way. My faith has been shaken. I’m working on finding myself again. Meaning spiritual and emotional and physical. I’m ready to start living again. I know the last visit I had started blogging and sharing more. But it was hard to focus thru pain and meds so gave up. I may share them still but as of now not sure about them. Going to cut the post here because tomorrow is doctor appointment and hoping to share more. I pray everyone us well and safe. God Bless

Please forgive me for the visits. Let me get myself together and I catch up soon.

2022, God, Listen, My Journey, My Life, Update

New Year

Posted on 1 Jan 2022 by poeticjourney

It’s been a while since I blog and shared much. I pray everyone made it in 2022 safely. 2021 was a rough year, still struggling with losing my dad. I haven’t been the same since he left last month was rough because of the holidays and his birthday. I must say if you still have your father in your life, do cherish them. I know we have to leave this world one day, but it’s a different hurt when there’s your rock. I had a few hospital visits due to my illness. The majority was good to visit and one wasn’t. I always think it’s funny when they try to tell me about my illness when I leave it for over thirty years. I’m going to try this blogging thing again and try to be consistent. I have been writing a lot lately just getting stuff off my mind/heart. Until next time I pray all is well and God Bless

2021, Bless, chronic illness, God, My Life, my story, Update

Update

Posted on 4 Oct 20214 Oct 2021 by poeticjourney

Hello and Welcome to my World. Its been awhile since I posted and read comments. I have been through a lot meaning to my emotions and still trying to get over losing my Ole Man{ dad}. Its rough when you a daddy girl. Its getting better but still is a struggle to be honest. I have been in hospital a few times. Its weird not having him here when he was the one I usually counted on when something would happen to me. I’m thankful last visit wasn’t long there was more concern about me getting covid then anything. I went awhile before I even step foot near the place since my area was getting it bad and they had sent extra help because of it. I did have to get blood that I wasn’t happy about. One of these days it can kill me instead of help me. Even though I haven’t blog much I have been writing here and there. I’m also thinking about where to go from here. i need go back to school and finish my last year and i still want to blog and educate people on my illness. I cant believe how many people have follow my journey because of the fact I have shared so much. Its a blessing that so many of you care and willing to learn. I still want to bring more to ya’ll. my fight isn’t over yet and its not easy. I must say I haven’t had any bad experience lately. I know the last time I went i got someone I wasn’t crazy about because they don’t know anything about sickle cell. She was making it seem like I had Covid instead of listening to me , I have made it clear that I don’t want her. If you not going to listen to the patient why be in the field period? Another season has come in and pray everyone is staying warm/cool depending wherever you from. I pray everyone is staying healthy as well. No matter what we going through God is still good all the time. Till next time God Bless

2020, AWARENESS, chronic illness, Mini Update, My Journey, My Life, Sickle Cell Anemia, Sickle Cell Awareness

Living With Sickle Cell

Posted on 3 Nov 20203 Nov 2020 by poeticjourney

Good Evening,

I’m still not feeling my best. I decided to go to the ER and got worse care of this year. I already knew it was going be bad soon as the so-called nurse practitioner walks in. Let’s talk about how I had to wait two hours before they decided to do something. Her first mistake was saying your second sickle cell patient I saw today. WDH? What’s going on, wonder do they say that to cancer patients and drug addicts. She then acts like I’m there a lot. I haven’t step inside the hospital since June. If you wonder if I got care, the answer no. Says my counts look good to her and better than last time I came. I’m going to give you some fluids. Let’s just say I got half the bag. I have been resting and hurting ever since my visit to E.R. I wasn’t going back and I stayed true to that. I know it’s not good to be in pain, but I can’t take any more disrespect from a true idiot. I have been resting and trying to get myself better. Crazy the weather has changed and that’s not good for the body. But back to my hospital experience. If you wondering if going to report the answer is yes. I was hurting too badly to do it that night. I have to get my emotions in check when it comes to certain things. I wear my emotions on my face and they could see I was upset and hurt. Probably heard how upset I was when I was talking to my mom. She will not be taking care of me in near future. So that’s a plus. I will make sure to keep y’all updated on that matter. I pray all is well with each and everyone and until next time. God Bless

2020, Cancer, chronic illness, Death, emotions, God, Mini Update, pain

Mini Update

Posted on 17 Jun 202015 Aug 2020 by poeticjourney

Good Morning and Welcome to My World!! I don’t know if I’ll return to blogging. My world has come crashing down on me. I know it’s best to write then let it all build up on me before I explode. I lost my ole man on 6, cancer took him from me. I’m actually doing stuff to not think of him not bn here. But it’s hard when he was my hero. I finally wrote last night and it broke my heart. I know he in a better place but I just want him here with me. I did get a chance to tell him I love him the night before. He didn’t say it back he was hurting so bad. Omg to see him suffering was heartbreaking. I wish I could rewind time back to when he was healthy and strong. I know we’re not suppose to question God, but I wasn’t ready to let him go. I knew deep down I was going loss him, but not so soon. I think I’m going end post here. It’s breaking my heart. I do pray all is well with each and everyone of you all. God Bless

2019, family, God, life, My Life, Update

Update

Posted on 5 Jul 20195 Jul 2019 by poeticjourney

Hello and Welcome to my world. If you celebrate the 4th, hope you enjoy it and be safe. Today we’re just resting. Two days ago I and my parents were in an accident. I never been in one and let’s just say my life flash before my eyes. God is good, it could’ve been worse then what it is. We didn’t hit anyone. My dad lost control. We couldn’t wake him and I and mom went in panic mode. I was the only one not buckle in. All I was thinking about he wasn’t waking up. We had to grab the wheel before we hit a house. We swerve into an open field and was just speeding. we ended jumping a ditch and almost into another one. So thankful we didn’t hit the pole. As some of you all may know I had a hip replacement a few years ago. I was worry I had did damage to it. My hip was in a lot of pain and my head and neck. My dad came around once it stops. So thankful we had help. So many people came to check on us. They saw the whole thing and somebody calls 911. They were asking if we were ok. They stayed till firetruck and ambulance and police. I rode in the ambulance. Not crazy about them, but it was a short ride. it’s weird how long you have wait be seen when you did had to wreck. So thankful my favorite guy was working. He made sure her x-ray order in and ct scan. As of right now my hip not looking so good. Everything came back good, but I’m walking funny. And was told first x-ray can miss something. I’m scared of what x-ray will say. Sickle cell appointment coming up so we shall see what going on. Other then dad seems my dad has something call syncope. When he coughs at the time he passes out. Thank God it’s not behind a wheel. So no driving for him no time soon. We hope to find out more this weekend are Monday. He did the fine day after the wreck, all of a sudden he’s doing it again and more then once. This is something new to him. We wondering if it has something to do with his new cancer meds treatment. I will keep y’all updated. Until next time. God Bless

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

Living With Sickle Cell Anemia

Posted on 5 Jun 2019 by poeticjourney

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

2019, chronic illness, fight, God, Health, My Life, Sickle Cell Anemia

Living With Sickle Cell Anemia

Posted on 27 May 201927 May 2019 by poeticjourney

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.