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.
Good Morning, what a night, it was a hella painful night. I didn’t get a call from the back after 11. I honestly was getting ready to walk out. Once got back things were running smoothly. Had a nice doc and they got one nurse they get my port every time now. My main concern was chest pain. X-ray and EKG look good but did find out have cars on my lungs. Learn something new and she said I even went back and look at other X-rays and showed the same thing. But she was the first and only doc me. If u wondering if I stay or go home. I’m home, maybe should’ve stayed the hospital is full and I would’ve bn in ER area for a while. My left arm hurts to lift, and so is my hip. So walking man slowly. I hate moving to be honest. Seem my chest pain is coming back now. May have gone back and let them keep me. Until next time. Oh if u wondering when got discharged it was around 8 that morning. I slept a lot. God Bless
Good Morning/Evening, I havent been feeling well for the past few days. I take it change of season. Some days I dont want to get out of bed, but hell who doesn’t have them days? On other days I just push through it and pray about it. Thats all I can do at times. I really do miss my dad. He would know what to say right now. Its another month and usually I get sick in October. But lately I been getting sick like every other month. I need to return to keto to be honest, it really helped me out . Have you every realize when you change your eating habit for the best, your body does so much better. I have slipped after losing my dad. But I must admit I’m not ready to leave this world just yet. So its time to get back on track. Another day in pain paradise. Not funny, but had to say it. When it comes to Covid, I make sure I dont go out if I dont have to. And I always wear a mask when I do step out, I care santizer and wipes. I dont do gloves because some stuff Im allergy to and same with diff mask as well. Its weird you never know what you allergy to until you stuck with having to have it around you or in your life constantly. I know I mention awhile back. I havent got the shot and I don’t plan on getting it. Im always careful and to be honestly I dont like been around people to be frank. Im more of a home body and I keep to myself. With this virus thrown at us it make us realize a few things. We tend to forget who and whats important to us. We have the opportunity to spend time with our love one’s. Thats a sore subject for me to be honest still. I still want more time to be with my dad. Covid didnt take him, the damn cancer rob him and us who love him. I always figure I would leave before him, but look I’m still here and his gone. Just thinking about it hurt
Is there appropriate way to grieve for someone you lose? Do you rush someone to move on when they lost there love one? I understand not going into depression over it. We have to pray for them not demand they move on. I had a talk with someone about it and they getting mad cause someone seems to be sleeping there life away. Please don’t tell me you understand when you don’t. Don’t tell me it’s going get better. Don’t tell me you going be there for me and you don’t. Don’t ask me what do I or the family need. I notice when you lose a love one, and after the funeral they calls stop. What happens afterwards when we still grieving and wishing our love ones still here. What happen to the calls the showing of love? Does it all go in vain and was you m lying to them? What happen when we start to struggle and lose our way. Can we call on you when we drowning and our hell and wonder if we ever going get out of it. So many unanswered questions. I’m so thankful for the people who understands where I’m coming get from and don’t sit and lie to me. Who says after so many odd years they still miss them and thinking of them and it doesn’t get any easier. Stop lying to us and saying it’s going to get better. Just be real and let us grieve the way we want. Pray for us and keep reaching out and checking in. Just be a friend or a family. What I come to realize after losing my dad, is family is BS. They like to show there assume and it the worse possible way. If only the person who we grieving the was alive you wouldn’t act the way you act and turn your back on family. When grieving we go though so many emotions. It’s really many steps to grieving.
Question is how do you grieve? Have you ever had anyone tell you to get over it? What do you do when a love one tells you how to grieve ? So many emotions run thru me when people try to tell me how I feel. Do share your thoughts on the matter.
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.
Technical I’m not finished with it but wanted to get it up, while I have the time and strength to share. I wanted to share it last month since it was Sickle Cell Awareness Month. But you all know its every day for me… Do enjoy and let me know what you think. The poem says a lot, so many sickle cell warriors have died this year. We don’t have it easy when we go to E.R/hospital. Since so many don’t know what it is or what we go through. We get sent home in pain or mistreated while been in hospital. I know you all have read a few of my post, and know I had could not so good nurses and doctors. I’m praying for a cure for us.
Day 19. Something I wanted to repost again. I can’t believe I didn’t add a date it was written. Do enjoy and God Bless
As you all know well the one’s that have been with me for a few years now. I haven’t shared much about myself besides my illness, God and few other things. I figure it would be a good thing to sort of introduce myself to you all.
I’m a bookworm and hope to one day to own my own personal library or either a bookstore. ( I have read Harry Potter 6 times each, yes all 7 of the books.
I love to shop. Clothes, shoes, even socks.
Spring is my favorite season. I’m a spring baby.
I’m a Gemini.
I’m the only girl, and the oldest.
I’m a homebody to the fullest.
I love to play Call Of Duty on Ps4. I’m surprise at how much I come up with while playing. A way for me to relax and clear mind.
I love watching Christmas and the movies..
I love watching NCIS, NCIS Las Angeles, finally getting into New Orleans one.
I have seen Harry Potter so many times, I couldn’t even give you the exact number. My favorite is the third one Harry Potter and the Prisoner Of Azkaban
Wow, I been here for seven long years a few breaks here and there. I started my blog when I was in college and wasn’t sure what put on my blog. With help of a lovely male nurse. He gave me the idea to spread awareness about my illness. I thought about blogging about my degree and what made me go that route. After going in and out of the hospital in my early 20’s I knew the world needed to hear my story. I never thought people would actually be moved by my story dealing with sickle cell. Hell, I didn’t think anyone would care to be honest. So many times we tend to keep our demons to ourselves because we scared what others may think because they don’t understand the struggle. I see i have made the right place by making WordPress my home to share my story and so forth. So thank you to each and everyone of you for making me feel welcome and joining my journey. Many Blessings. 🙂
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:)
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 🙂