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/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
Welcome to my world. I haven’t blog in a while but have been thinking and contemplating on how to share more of my illness and my thoughts on different things. As I was browsing sickle cell Facebook group I came across a patient sharing what used to be my journey going to the hospital with multiple pokes and bruises. I never thought in a million years I would agree to a port. But when you tired of bn a pin cushion and having a rude ass nurse wake you out of your sleep to put a line in. You either go for line or port. I was glad my nurse was in the hallway when it happens. Some nurses or so compassionate and some just there for a check. It’s always a plus when a nurse has an illness just as bad as you and understands our pain as well. It’s funny because my doctor had been trying to get me to get a port for a while. I have always been scared of needles and still is to this day. When dealing with my port sometimes I hold my breath and they have reminded me to breathe. Everyone doesn’t know what they doing when it comes to my port. They don’t like to listen when you tell them what works and what doesn’t. The port has been a life savior for me in more ways than one. I haven’t taken many pictures showing my port, but do have one. My journey is just that (Mine). If you wondering what my port is used for. It’s for getting fluids, blood when I need a transfusion, and for meds of course. I know over the years I spoke about my port and probably when I got it. It’s good and bad with them. Hell, it’s good and bad with everything. I’m not really at my best, so I’ll end my post here. I pray all is well and everyone is staying safe and warm through the holidays. Many Blessings
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
Another day in pain and wondering if I should go to the ER. Always worry they going keep me or mistreat me. I get great care once on the floor. It’s a shame I have to worry about this when all I need and want is relief and not to hurt. I’m not asking for judgment. I hate lying to my mom and saying I’m fine when I’m not. I hate having her worry about me. I know if I wait too long it will take a while for my crisis to end. Honestly, I’m just tired of hurting. I pray all is well and if you praying warrior do say a prayer for me. God Bless
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.
Hello and Welcome to my World. Today isn’t a good day. I don’t know if it the weather or the stress. It could be a combination of both. Some days or good and some days are bad. Today is a bad day. We don’t realize the things that send us over the edge. The things that disturb our peace mentally and emotionally. I’m learning to step back and look at what was hurting me. I make Saturday a wash day at my mother’s house. I push myself because I know things have to be done. Right now my back and up to my neck. I hate depending on my meds to help me feel better, I hate hurting even more. I have been doing a lot of resting for the past two days. Taking meds, laying on a heating pad, and of course, taking my meds. Oh, and drinking plenty of fluids and praying. I wish my dad was still here. I always go to him first and ask him to pray for me. I’m going to end the post here and pick up with an update tomorrow. Hope and pray everyone had a good weekend. God Bless
It’s sad how so many of us are dying due to the lack of care/ and knowledge. We’re dying because they don’t want to listen to us and think we faking it and want to be drugged up. I wish I can be normal but that’s, not the case. Im a warrior and in this fight till im call home. It breaks my heart to hear how we are getting treated. Hell, I still hate going to the hospital with all the BS I done went through. It’s getting better, but that nagging fear still in the back of my head. On my last stay, I was blessed with a good doctor who took the time out to hear my voice. I was so shocked it threw me off. I even had a good CNA! We stay in touch to this day. Doctors and nurses need to go back to school and get more educated on what the hell is Sickle Cell is. I hate when they ask how long you have been living with the disease. Im like what the hell. All my life. I done had so many compassionate nurses than doctors and that says a lot. The question is when will they do better by us?. We want to live and not die by their stupidity. From on out ill be doing more on my illness. Im tired of hearing someone died when they could have lived. We shouldn’t have to be scared of going to the hospital. Im is sorry if im everywhere with my post. I just want us to be heard and to show yall what I go through with living with this illness.
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
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