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

Living With Sickle Cell Anemia

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.

Posted in Uncategorized

Living With Sickle Cell Disease

Hey and welcome to my world. As of lately, I haven’t been feeling good. I couldn’t use my right hand to do much of anything. Feeling a little better today. I had to make E.R trip Sunday because I was hurting so bad and right hand is and was swollen. I had to debate with myself if I wanted to go. The crisis started late Saturday night, I knew I didn’t want to go that night and be stuck with a lozy doctor with no bedside manners. I know I shared some of my experience with you all in the past. I was worry I would have the same problem as Sunday rolled around. I finally made up my mind go before it got worse. The wait was prob over an hour it was a busy day. Got triage out the way. I did t like the doctor who name was on my band. He was the same doctor that gave me med I’m an allergy to and can kill me. The doctor never wants to listen to the patient. I got a woman doctor who I had when been admitted on the floor. She now works in E.R. Before go into more information on my experience. I have bn going cold turkey without my pain meds. Haven’t had it since June but did have E.R visit last month. So I made sure let her know that. She wanted to just give me fluids and oxygen see if that helps. Red flag, if I could handle my pain at home I wouldn’t be made E.R visit. So I was in pain for over an hour before got med. Thankful counts were looking oh do good, but at the same time I know just because of counts show good report doesn’t mean anything. She was like what should we do. She caught me off guard with that question. I have never got asked that question from a doctor at that hospital. I was like is she pulling my finger she can’t be serious. She was like we going to give you some meds so you can think about it. She even asks what I take. I’m like yea this got me a joke. But she was serious. I decided to go home because I could go to my sickle cell doctor and pick up my prescription. She gave me a look because she knew I was in pain still. And sometimes I do end up returning back to E.R. she gave me three bags of fluids before she discharged me. Sometimes you have been strong when you don’t want to be. Don’t get me wrong I was getting frustrated because of my pain. I wanted to cry and scream but I know to do all that would make it worse. I did have some good nurses that night. And woman got my port on the first try, when I went last month, they had a hard time. I had request a nurse who never miss doing my port. When you hurting, you don’t want to hurt even more. I did pick up on the doctor I don’t like voice and was glad I didn’t have a deal with him. God is good all the time. I did get a chance to see my favorite doctor who got me last time. I wasn’t on his side and he was like she is good. He always let me know what’s up with nurses and doctors. I can talk to him like a friend. Both hospital visits were not so bad. I have started taking my Endari meds again, so I’m taking that’s helping with my counts. My retic was high. I usually get sick and have been admitted in October. Still not 100 percent. I have post and blog when I’m feeling ok to pick up. My hand is still swollen, it’s going all the way up to my shoulder blade, to be honest. I pray all is well with each and every one of you all who read my post. And thank you for the prayers, I can never have enough. God Bless.

Posted in 2018, AWARENESS, God, Journey, Mini Update, My Journey, My Life, Sickle Cell Anemia, Sickle Cell Awareness

Living With Sickle Cell Anemia

Hey World,

And welcome to my world. I took a break from writing about my disease because I felt like I was talking about it too much. But honestly its truly not enough information about what I and many others go through on daily basis. September is Sickle Cell Awareness month. With so many dying left and right and it seems like every day makes me wonder what is going on. Why isn’t there much information about what we go through and why does it seem like the doctor and nurses have stopped giving a damn about us? It’s time to better educated new and younger doctors/nurses about sickle cell and stop making it a black disease because that’s not the case. And time spread awareness on sickle cell trait. I got to stop being quiet and start opening my mouth and let the world know what’s going on. I have debated for a few weeks now on coming back and doing what I started. Some may not like my content and that’s fine. On days when pain is so bad, I pray that God calls me home cause it be just that painful and nothing love ones do doctor and nurses help. I recently had E.R visit after going months without having an issue. Sorry, I take that back, I fought it home a few months again. I haven’t been admitted since May before my bday. God is truly good all the time. I’m not sharing my story for pity, I’m sharing my story to spread awareness. The more I stay quiet the less is getting done for the sickle cell community. I do plan on doing an update post on how my experience went with hospital visit and doc appointment. I pray all is well with each and everyone of you all. God Bless

Posted in 2017, Cancer, God, Health, Journey, Mini Update, My Life

Update

Good Evening World,

Its been awhile since I posted. Every time I would start this post, something always came up. Funny how life slows you down when you so determined to do something. This may not be the posy from months ago, but hey its an update post. My dad got good news a few weeks ago, the new treatment is working and cancer shrinking. God is truly good, even when you going thru your own storm. I have found a new primary doctor, hoping have a post about that before year out. Its almost Thanksgiving, I have a lot to be thankful for. I’m alive, not in the hospital, surrounded by loved ones. I’m free, I could go on. I pray each and every one of you all is well. Hope have a better update in future. God Bless

Posted in 2017, AWARENESS, fight, Journey, Life Lessons, My Journey, My Life, Sickle Cell Anemia, Sickle Cell Awareness

Inside my journey

https://www.statnews.com/2017/09/18/sickle-cell-pain-treatment/?s_campaign=fb&utm_content=buffer9f7d0&utm_medium=social&utm_source=facebook.com&utm_campaign=buffer

September is Sickle Cell Awareness and wanted to share the interview from a fellow warrior who experiences same crap I do and many others. Thank You for coming along for my journey. 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, fight, God, Health, Mini Update, My Journey, My Life, Sickle Cell Anemia, Sickle Cell Awareness

Day 1, Living With Sickle Cell

Good Evening, I decided to make E.R visited yesterday since the pain wasn’t letting up. My mom actually pushes me to go, so they could give me some fluids and oxygen. Let me tell you I was thankful the doctor I like was working. He actually knows a lot about my illness so that’s a plus. My counts weren’t too bad was in middle 8’s, with an 11 for the retic, which let me know why I was hurting the way I was. With two doses of meds, my pain wasn’t moving. I didn’t catch it in time and that’s nobody fault but mine. I have been resting every since I got on the floor, let me just say probably slept 5 or 10 mins be honest. I can’t rest like I want when I’m hurting. I have been having chest pains on and off over the past week. So he made sure to do an x-ray to make sure I didn’t have an acute chest. I’m hoping and praying these a short stay. I have a nice doctor, she had to change my orders how often I get meds before seen me. That meant so much to me. She took the time out to read my orders and what was done last time I was admitted. I got some good nurses as well. Loving with these disease has taught me a lot. Taught me how to pick up on signs and what not to do when it’s already too late. I was getting upset with myself yesterday cause nothing was touching the pain. I thought I was doing everything right, but it doesn’t matter if you do what need be done. It comes with vengeance over of body. Sorry cut these short, but I’m getting tired hopefully I can get some rest. Truly means a lot if Y’all can keep me in your prayers and thoughts. Until next time, pray every one of you all is well. God Bless

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:)

Posted in 2017, Cancer, Faith, Health, My Journey, Prayers, Sickle Cell Anemia, Update

Update 


Hello World,
It’s bn few days, bn taking things and life slow. As I mention in last post. We find out my dad has cancer. All I know is it serious and I’m not sure just how. I believe and know God has the last say so. I had check up today and counts have drop from 8.8 to 7.5. Doc believe need unit, but I’m not trying have that right now. I bn dealing with headaches and pain lately. I knew it was something but just figure it was the weather. Last time i went er, they did nothing and I was running fever and coughing and whatnot, but since everything looks fine to them sent me home. Smh. I hate when people don’t so they job and think just cause counts fine nothing wrong. Well obvious they was wrong and probably my stressing didn’t help. The kids went back to school yesterday. So that a plus, we can rest and do more when they away learning.. lol.. omg 2 was and some days with them off. I.must say thankful I’m not parent. I know my blogging hasn’t bn consistent in awhile. But more then ever I need be writing clear my head. I need get back in school and finish my degree. My plan for the summer if I live see it.i hope you all rights well and enjoyed the New Year. I read comments and even some post, but bare with me. GOD Bless