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.
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
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, 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
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
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
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
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.
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:)
As I mention a few post back about meds they have me on and I would stop taking once again. Every since I stop taking, I done had less and fewer headaches. You would think they would have come out with meds just for us sickle cell patients instead of pushing the chemo meds unto us. I done tried these meds like three different times. I am damn if I stay taking it and not feeling my best. I have read the good and bad with the meds. But all I see is the bad, to be honest. This med can cover up the fact you be in crisis by making your levels look good when you not. It can make you lose your hair and also cause you to have cancer. And much more side effects. Oh yeah to top if off you not suppose to touch the meds without gloves, but they want us to take it? Ding Ding Ding, where the good at people? I don’t see it are either I just don’t care for the good. Some of the so call doctors only want to pump us with meds just to get us out of there faces. Last year I had some problems with E.R doctors. They didn’t want to do they damn job and could have cost me my life. I was seen in E.R over 10 times in one period of a month. My retic was high as I don’t know what came down to it when I was in full blown crisis, my counts were low as heck. I don’t know how I walk in that hospital but I knew for a fact I wasn’t walking out of it the same day. I was so thankful to have good E.R doctor that day. And I was on and off that meds at the time. How am I suppose focus if my head feels like it wants to explode into next week? How do you make time with your family count when all you feel is downright awful? So many questions and not enough answers. I have two doctors that’s, not in my area, but I hate to have travel long way when I’m hurting. Sitting too long in a car is so painful. You don’t have to have a sickle cell to understand where I’m coming from with that. I have been on Folic Acid since I was young and to be honest, I rarely take that med every day than to take chemo meds that give me more problems than it should. What do you do when you done gave it chance after chance, you throw in the towel with the meds and move on and live your life as best as you can. I’m either nausea all day are drained and just want to sleep. Why not correct a med just for us that may do more good than bad? It’s bad enough we having a fight with our body on the inside, but it would be nice to know someone was out there creating something to help us along this journey to live instead of giving up the fight as so many of us have. It is even nice if someone was creating a cure for it as well. Yes, I know only God can do that, just hurts to read so many losing the fight. Until next time God Bless 🙂