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.
I know it’s been a while since I blogged. I have had two hospitals Stays since. The first one was after lost my lost man and they thought had covid but ended up with pneumonia. The question to me is how I got it. Thinking someone at the funeral was sick and should have stayed home. For the ones who have been with me since I started blogging about my illness, you know the shit I have been through. The mistreatment, not wanting to believe my pain because they couldn’t understand or see it. I have a podcast for you to check out. I’m going to school with the young lady they talking to. She is one of the strongest women I know who battle this illness. No matter how strong you are they still try to mistreat you. She gave me the ok to share it. I’m still trying to find my way back to blogging. I think I’m almost there. So bare with me. I’m going to visiting blogs. Thank you to the new followers who join my journey. God Bless each and everyone of you all. https://www.wnpr.org/post/almost-everybody-hurts-exploration-pain
Hello and Welcome back to my world. I’m still here and hoping to go home tomorrow. Thankful my counts are coming up on its own. I said counts were 7.7, I meant it was 7.2 and now counts are at 7.7. I’m still having a good doctor on my team. My pain isn’t as bad as it was when I came in so I’m thankful for that. My legs hurting but they starting to ease some. I’m looking into new meds for my illness. Waiting hears back from them. My nurse practitioner told me about it a few weeks ago. It was either the pill one or the iv one once a month and had to drive so that was out the question. I have the doctors asking me about taking the cancer meds again. But I’m good. Some doctors dont know its more meds out there for my illness. Be doing another post about the. We meds. Waiting to see if my insurance approves it. Until next time. God Bless
Hello and Welcome back to my journey. Another long day here. Last night was rough, i was hurting all night. Shortage on IV meds. IV meds are what needed to get the pain under control. I have a good team of doctors. Nurses can’t really say right now. My counts drop 7.7 overnight, so they have come and taken more blood for cross and type if i need blood. Let’s pray I don’t need. I have started reading again on my kindle to take my mind off my pain. Feels good getting back into reading and visiting blogs. I’m behind on my poetry for the month. I’m ready to go home, can you believe that. I’m not as bad as when i came in so that’s a good thing. But im, not 100% either. I’m starting to get tired of fighting. My body is in overload. I really don’t have much to say. Pray all is well with each and every one of you all. Blessings
Good Morning and Welcome to My World. It’s been a while since I posted about my illness. I’m trying to do better. Today isn’t a good day. Not feeling my best. I don’t know if it’s the rain or the season change that got me hurting. Usually, I tend to go in crisis around this time every year. I have been avoiding going to the ER. I may need to put my big girl undies on and go and get check out. I had a doctor’s appointment last week. I didn’t really get blood work done and wasn’t feeling my best then. They were more concern on a check-up from the last visit when I got admitted for 8 days. And make sure my kidneys are good. No news is good news, right? She would have called me and let me know what’s what so I’m glad they are ok. Last time I went to ER let’s just say the woman nurse practitioner was an idiot. My counts were in the 7s so she going tell me I wasn’t in a crisis and was going to discharge me. I look at her and said fine. Just cause my counts shows and looks like that don’t mean anything. Let’s just say I stayed in a crisis for two whole weeks. I made sure to call sickle cell clinic to let them know what was going on and for my pain meds. I tend to go without them but when pain is bad I let them know. She wasn’t happy about the woman saying I wasn’t in crisis. The month of July did a number on me so I was trying to go cold turkey. I don’t see doctors till next year. I’m hoping I don’t need them till then. God has been good to me even on the days when in fed up with the pain. I’m thankful. I’m also thankful for y’all sticking with me, as well as the new people who have to join my journey. Bare with me, haven’t forgotten about y’all. I did read a few posts a few days ago. It’s going to take longer when I’m taking meds for my pain. Until next time. Pray all is well with each and every one. God Bless
Hello and Welcome to My World. It’s been a week since I been home from 8-day stay. God is good. I was a worry for a while. Where should I start? Come to find out the accident put me in crisis. Not sure if I mention the ride to my check up on my hip. Let’s just say that ride was hell. My body was so on fire. Let’s just say I was glad I had arrived at the doc office but not really because I had to get an x-ray and I was already hurting. It took prob 10 mins to sign in and sit and wait to be called. I saw a person dress half-naked and I was like hope she doesn’t have sickle cell. We don’t like cold. A lot goes through my mind when I’m hurting while trying not to think of my pain. I got called to let’s just say I was not happy about getting back up and walking again. Finally made it to the back and let’s just say things weren’t going good. Got on the scale and went in a room and did that good stuff. Waited quietly for nurse practitioner and we’ll let’s just say it went to hell. She walks in and was like I have never seen you like this before. Oh, and I didn’t look good. I tried to hide how I was feeling but when you in pain it was hell. So she was like can u get on the table. Let’s just say had said a prayer before got up. And it went straight to hell. I didn’t want to be touch and it turned to move and tears fell. She was like yep never seen you like this going direct admit you. Let’s just say it didn’t go that way because the hospital was full. I was in the hallway in er part for 2 hrs before got meds and let’s just say it was supposed to be iv meds and got the pill. You guess it, it didn’t work. You would think a big hospital with 9 floors would have room. But nope. Anywho our waiting 6hrs in the hall to be admitted. Finally got put on the 5floor and settle in. Guess who hadn’t eaten all day till got in room at 5 or 6? Me. I had some great nurses and doctors. Seem always do when I’m in that hospital. It’s like every few years. I stayed on 5 floors, think maybe 2days. Things started going bad and oxygen was dropping and seem my lungs weren’t looking good. I ended up with acute chest, which can kill us. After I heard that was wrong. Started to panic but just prayed and became calm and call parents to let them know what’s going on. They couldn’t be with me since dad was in the hospital. Hey, I’m grown and actually like been alone. Long as I can call them and hear there voice everything going be ok. I got a move to.9floor pcu. That’s how serious things went and quick. The doctor had asked me have I ever had acute chest and I said yes once. She was like did you have cheat pain. I said no. That was alarm and she did an x-ray and come find out she was right. I had good nurses on 9 floors. They stayed on top of pain, before getting a move to the floor. Meds had got up to iv meds. Actually when sickle cell doctor find out what board said and let the doctor know. Guess she talk to them and things got to change and quick. Been on 9floor and receiving bags and bags of antibodies. Sighs. So wasn’t happy about that. Let me be real, it had been months since had pain meds. I like to go months without my pain meds if I don’t need it. Guess body wasn’t used to it and I didn’t feel like myself. I don’t know-how made it from bed to chair get comfortable. Why do they have beds that move in the hospital? Like you have been suck in. I know what into door few times going to. bathroom. Sucks when you getting fluids as well. It’s like hey let’s go to the bathroom, even after you just went. I hate sleeping with oxygen in the nose, and when came to checking and it was low they knew why. Got to the point when I did get out bed go the bathroom I wouldn’t put it back on. Let’s move on from the depressing part. Believe I was on 9 floors 3 almost 4 days. I was glad to be leaving the floor. That means I’m out of danger. Oh almost forgot to mention hip results, everything came back ok and not damage. Just bruise. Omg, I was so happy. Few days that pain was gone, just other stuff had worry about. I moved to the 4 floors once leaving 9 one. A couple of days there and I was a free woman. Lol. On the second day when met doc n, not his partner. My room was full n had student doctors. Let’s just say I’m good on all them looking at me and the room was full. He asks was it ok and said no and he sent them out. Thank God. It’s a plus when the doctor listens to you on everything from how you feel and what you take for pain. They were surprised to find out what I had been doing for pain. I may have a serious illness, but I don’t want to be defined by it. On my good days, I don’t think of having sickle cell. You probably thinking to say what. We like being treated like we’re normal like everyone else who’s not living with chronic illness. Oh, yea almost forgot I did end up getting 1 unit of blood, let me just say I really didn’t want it because of what happened last time. Guess went good, I did scratch but that because of meds. I didn’t get blood till I was in my low 5’s and was getting headache and feeling very weak and tired. My mom had talk sense into me when it came to getting the blood. The way she did it was the only way I was going agree. What would we do without our parents? Well whew, that was a lot to type and sorry it took so long on update. My dad is doing much better, not passing out when he cough anymore. He still coughing but they have him on some meds to help with passing out. He has started his meds for his cancer as well. Well, thank you for being patient and sticking with me on this journey. God Bless until next time.
Hey and Welcome to my world, for some Welcome Back. What a day I had. Finally got to meet my primary doctor and so far I must admit I like her. I’m so not a morning person and I had to be a walk in person. OMG! So had to be there at 8 this morning. Sighs. You guessed it still had wait be seen. Sighs. I hate the doctor office for that reason. Waiting! Got to the back prob before 10. Gave them all my information and told them why I was there. As some of you may know I have a nasty little cold and she orders x-ray that plan get tomorrow after my doc appointment. Since I have sickle cell we trying make sure it doesn’t turn into acute chest or pneumonia. Who knew meds for something else could give me a cough that evolves into a nasty one. In the back of my head, I’m saying duh. Lol. Anywho we made the visit sweet was the student doctor working with her. I’m not fond of students working under nurses or doctors. But she actually surprises me with the questions about how she can be a better doctor when dealing with sickle cell patient. So gave her a few of things I been through and how I have been treated. She sat and listen to me talk. I pray she never change from listening to her patients. I even gave her my blog link. I explain to her so many people still don’t know what sickle cell is. Before actually open up to her I as if she knew what it was she just knew the basic of what’s in the book. You would think after all these years they would update the information. Still not my best but hoping the meds help. Will keep y’all updated as I go. Have Eye appointment tomorrow. Until next time God Bless
Today is Sickle Cell Awareness Day. I know I have mentioned it so many times on my blog and the different things I go through with dealing with this disease. Lately, all I see on Facebook is how they are getting treated. Some of yall may have never heard of the disease. Well, today is the day I explain what it is. If you want to know more keep following me on my journey and google as well. I never thought people would care about what I go through.
Whats sickle cell anemia.
It’s an awful hereditary blood disease. You can be fine one minute and the next you not. Years ago we didn’t see the age of thirty. Wow what a mighty God we serve, some may not see that age today and some are seen age all the way up to there 80s. When in crisis is turns your blood into crescent making it unbelievable to move because of oxygen not reaching that area. Normal blood cells look like doughnuts. Let’s be real for a second this is a dangerous disease it affects all your organs. Since its heredity disease. It can affect all your kids are just one or two. My parent had five of us, only two of us was diagnosed with this disease and the rest trait. They didn’t start testing babies to till the late 80s. For some many years, I was told and so many around us that sickle cell was a black disease, I believe it to join sickle cell groups on facebook. Wow, the many faces behind this evil disease showed me the truth. Since 2008 they have recognized sickle cell as a global public health priority in order to raise awareness to sickle cell. With that been said its still not much awareness. So many people still don’t know what sickle cell is. I hope by joining my journey it opens someone eyes and hearts up.
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
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.