Hey Reader’s! It’s currently 3 in the morning, and I’m just laying in my bed right now (after having to walk to the bathroom and back), thinking about how crazy it is that my legs can be experiencing the level of pain they are right now, and look completely fine. Like, how is this much pain not visible for all to see?! Yeah, there may be some swelling, but for the times when I don’t swell up (like now), it just blows my mind. I feel like this amount of pain should be physically seen by all. I guess in a way it is, because it’s a lot harder for me to walk, that’s IF I’m able to walk, at all. I’m laying here looking at my legs, and they look as fine as can be…LIES. Anyway, this may just be the pain and pain meds talking. I hope everyone else is having a pain free morning. Later!
When will it stop? When will people realize we are all created equal, and should treat each other as such? I’m tired. I’m tired of constantly seeing black people killed for no reason other than the color of their skin! I have just come to the conclusion that it will never change. Black people have been fighting for equal rights for too long, and we’re still having to deal with the same racist people/government. Jacob Blake was shot IN THE BACK seven times by the police! While protests were going on for this senseless shooting, a 17 year old white male, Kyle Rittenhouse, was able to walk around freely with a AR-15 and shot 3 people, killing 2 of them. Racism is just so blatant now, it’s astonishing. There’s video of officers telling this male: “we appreciate you being here”, while he’s just casually walking around with this semi-automatic rifle. He was even handed a bottle of water from one of the officers in an armed vehicle. Once he shot these 3 people, he casually walked up to a group of police officers and told them that he shot someone. Did they arrest him then? No. They just let him walk on by, completely unharmed. Now, why is it that this white male is still alive after killing people, but Jacob Blake is paralyzed now because he turned his back on the police while trying to get away? So, that’s how it works now? Everyone that tries to flee from the police now don’t get tasered, tackled to the ground, chased, or any other number of tactics to arrest them? Or is this really just because of the color of his skin? Some people are so scared of black people because they feel like we are such a huge threat to them, that they feel the only way to go about things is to kill us. I really try to not let these racist things get to me, and change my viewpoint on things, but it’s getting harder to do. The world is becoming scarier by the day. There’s so many other things to be focused on besides the color of someone’s skin. I will never understand that level of hatred, and I don’t want to. I don’t know what the solution is, or if there ever will be one, but from the looks of it, we’re a long way away from that. I shouldn’t have to feel unsafe whenever I leave my house, because I don’t know if someone will try to harm me because of my skin. I’m tired of it. So sick of the hate.
Hey Reader’s. So, I’ve been having chest pains on and off for over two weeks now. In my previous blog, I wrote about the difficulties of living with Sickle Cell, during a pandemic. Well, one thing I forgot to mention is the fact that I have also been having chest pains, and there is basically nothing I can do about it. Sickle Cell chest pains are already difficult to deal with, I’m sure my fellow Warrior’s can attest to that; pain medication for some reason doesn’t touch chest pain, at all. So, to be dealing with this during a pandemic, is very hard to do. Thankfully it hasn’t gotten as bad as I KNOW it can get (which is crying my eyes out, bad). I have been having slight trouble taking deep breaths, and when I start moving around too much, it hurts worse. I’ve had pneumonia several times, so I don’t think that’s what it is, but if I keep having trouble taking deep breaths, I’m worried that’s what it can turn into. I know that my blood is low, so maybe that has something to do with the pain. I may have to just bite the bullet, and see if the Sickle Cell Day Clinic is even open right now for patients, and go get treatment if it is. I just don’t want to back myself into a corner to where I end up in a really bad crisis, and have no other choice but to go to the hospital. I will definitely keep you guys updated with this, so until next time!
“We do survive every moment, after all, except the last one.” – John Updike
I love the simplicity of this quote because it’s straight to the point. In life, whatever doesn’t kill you, makes you stronger. When I’m in pain (which I am now) and going through a Sickle Cell crisis, little quotes like this just reminds me that the pain won’t last forever. Once the crisis is over, I become a survivor, yet again. I will be a survivor, until the last one.
Usually when I start my blogs I’m very upbeat. That has sadly been a lot harder to pull off, lately. As everyone should know by now: a black man by the name of George Floyd, was murdered by the police, and a bystander caught it all on video. People, ESPECIALLY, black people, have had enough. I’m so thankful for all of the protests, and petitions, and people just standing together for equality…but it shouldn’t have had to take someone dying (once again) to get justice and make changes. I just can’t wrap my head around the fact that some people could be so racist. What puts that much hate and fear in a person’s heart? And the protests seem to just be bringing out even more racists from their hiding places. It’s really scary to think that there are people out there who hate me just because of the color of my skin. Because of some melanin?! Really?!…so sad. I am just so glad that through this tragedy, there has been some changes made. The most important being that the police officers have been charged. Let’s just pray they actually get sentenced though. Also, there has been a lot of defunding in police agencies. When we the people start putting our foot down, and demanding change, it’s amazing what we can accomplish! I really wish that I could have protested with my people, but my immune system is already weak from me having Sickle Cell. I would have literally been risking my life with the Covid19 virus still very much being a thing. Instead, I did my part by signing all the petitions I could, and sharing them all on my social medias; and also by donating and sharing different sites for that as well. Every signature and dollar helps. When all of the protests started happening, the videos were really heartbreaking. Not the videos of the rioting/looting, but all the videos of the police STILL displaying police brutality. During EVERY protest, there will always be those few bad seeds that will try to start a riot, and loot! So, I’m not even going to give that too much attention, like the media and Trump are trying to do, to take the focus off the real issue. But to see so many videos of police inflicting violence on innocent protesters…wow. No words. I really just hope people in power start putting actions behind their words for change. We need it. Don’t let George Floyd’s death be in vain. If you would like to start making a change, go to: http://www.change.org to sign petitions and make donations. Thank you!
Hey Readers! I’ve been sick a lot lately, so I haven’t been able to blog the way I would like. Not to worry though, I’m back on my writing now, so I’ll be updating you guys a lot. This blog is basically going to be me venting, so bare with me. Well, as you all know by now, I have Sickle Cell Disease; and it’s very true that in a lot of ways I’m not able to do what other people can. I get that – hate it – but I get it. The problem I have with this is when everybody treats me like I’m going to literally break if I try to do ANYTHING! I understand that I have to pace myself when doing things, but dang!… that doesn’t mean my life should come to a complete halt and sit around doing nothing day-in and day-out. I don’t think people really understand how demeaning that is. Don’t get me wrong, I know that when someone does this to me, it’s done out of love; but I’m a grown woman, it feels terrible to always be looked at as less than. I’m mostly seen as this sickly person that needs to be looked after, it just sucks… I try not to let stuff like this get to me – because once again – I know it’s not done in a malicious way; but I’m only human, so of course it does get to me at times. I mean really, how old do I have to get before people start seeing me as an adult?? Logically I know that my age isn’t the problem, it’s the sad but very real fact that I have a disease that is killing people daily. So, I guess all I can do is understand the reason I am treated the way I’m treated, but also continue to try getting them to understand my point of view. Writing these blogs also help, it’s my way of venting and getting things like this off my chest. I’m not mad though, more frustrated than anything. I love my family to death though, so I can’t hold this against them, when I know they’re just trying to protect me the best way they know how. Alright Readers, I’m going to keep this blog short. Later guys!
Hey Readers! Well, first let me say thank you to everyone that read my last blog, and followed the link in it to my YouTube video. As I said in my last blog, that was my first of hopefully many videos about Sickle Cell Disease. I was VERY hesitant about putting myself out there in such a personal way for everyone to see, but ultimately I’m happy I decided to go through with it. I will definitely be doing more in the near future. I feel there isn’t a big enough spotlight on Sickle Cell Disease, so who better to advocate about this disease than someone living with it? Anyway, this blog is about what’s been going on with me these past few months. I haven’t been writing blogs lately because I’ve been extremely sick. I’m use to having my regular Sickle Cell pains, but it was completely different this time. It all started about four months ago, I started feeling really bad. It was nothing like the regular pain I get, I just felt real lousy for some reason; I thought maybe I had the flu or something because my throat was really sore, and I felt extremely weak. But one day I was in bed still feeling bad, when (out of nowhere it seems) I started hurting. When that happened my family told me I needed to just go to the hospital; it’s a good thing they did too. When we got to the ER, they took me to the back right away, when the Doctor came he literally took one look at me and told my dad he was going to admit me into the hospital. That has never happened to me before, they usually do blood work and give me pain meds before they decide to admit me. But when the nurse came in to setup the I.V. and stuff, she looked at me and said “oh yeah, I can tell you in pain and dehydrated”. Turns out, the whites of my eyes were completely yellow, meaning I was extremely dehydrated; I didn’t even know until her and my dad pointed it out (I’ll put a picture in of it so you all can see). Even with my eyes like that we still just thought I was having a regular Sickle Cell Crisis. So, they admit me and have me on a lot of I.V. fluid and my regular pain meds. But I still felt terrible, and my mouth was completely dry, I literally had no saliva in my mouth, I couldn’t even swallow without drinking water first, it was that bad. So of course feeling the way I was feeling, the thought of eating wasn’t even on my mind; and of course that’s no good. A few days later the Doctors came, and told me I had a very serious infection, which is why I was feeling so terrible. I didn’t realize just how serious it was until, a Cardiologist came and said they had to perform surgery to see if the infection had spread to my heart, and if it had I would need a new heart valve. The next morning they performed the procedure, and thank God, the infection hadn’t spread to my heart. But, unfortunately, my kidneys hadn’t faired as well. A Specialist came and told me I may have Kidney Failure, so they did some test and thankfully they weren’t failing; but he said I was extremely malnourished and it was affecting my kidneys. So, they had a Dietician come and put me on a protein drink, because I wasn’t eating right. So I’m thinking okay cool, give me the I.V. antibiotics, the meds, the protein drinks and breathing treatments (I also wasn’t breathing too good) and I’ll be okay….nope. It turns out they had never seen an infection like mine (they didn’t even have a name for it!) so the antibiotics weren’t working. They kept changing them to see what helped. Then, like I’m not already going through enough, an Infectious Disease Doctor came and told me they need to do some test to see if the infection was in my port (that’s the device they placed in my chest under the skin to access for I.V.’s and to draw blood). So, they do some blood work, and of course the test came back positive, it had spread to my port; so the Doctor said it had to be removed. I outright refused the first few days, he came back every single day asking me if I would allow them to remove it, and I kept saying no. Now, let me explain: my port is a vital part of being able to deal with Sickle Cell. When I have to go to the hospital, instead of them sticking me with a needle literally all over my body trying to find a vein (including in my neck), they just access the port. It makes a HUGE difference in my life; and mind you, the same Doctor told me I needed my port removed like two years ago, and when they removed it the port wasn’t even infected! So this time around me and my family are super hesitant. Even my Hematologist didn’t think I should. But that all changed one day when I started running a high fever; I felt terrible and was in and out of it that whole day. The Doctor came, and told me I was risking my life and could die, then my Hematologist came and basically told me I was going to have my port removed first thing in the morning. So when my Hematologist whom I’ve known for years now, and trust looked worried and insisted on an emergency surgery for the very next day, I knew it needed to be done. So, the next morning they tried to place a regular I.V., which absolutely was not happening, so they had to put a pick-line in my arm right before the surgery in order to give me anesthesia. The surgery went fine, they removed the port and this time the infection had spread to the port so it was all for the best. My fever went down after that, but they still didn’t know exactly how to treat the infection. So, I was in the hospital for a whole month dealing with all of this and my regular Sickle Cell pain. At this point, everyone including the Doctors are trying to figure out how I can get out of this hospital. They kept trying different antibiotics and the Infectious Disease Doctor told me one day, that he was trying to get me approved for this new drug, that hadn’t even been approved yet by the FDA (just an idea of how serious this infection was); but until then, they were going to release me from the hospital as an outpatient. I was just happy to be leaving the hospital so I would have agreed to anything! So they release me from the hospital a few days later, on two I.V. antibiotics I would have to administer to myself five (yes five) times a day and one antibiotic pill I had to take twice daily, for twenty-one days. A nurse came the first day to show me how to do everything, but it was real simple for me because I went to school for Medical Assisting. The problem wasn’t doing it, it was how often I had to do it. I literally didn’t get a full night of sleep during the whole time because every four hours or so, one of the antibiotics had to be administered. I started getting confused with simple things and forgetful; when I had a little over a week left of the antibiotics I started feeling a pain in my arm where the pick-line was. I told, the nurse about the pain, and that the I.V. wasn’t running as fast as it should have been. She told me I needed to go to the ER right away, I absolutely did not want to but when I told my parents what she said they made me go. I guess it’s a good thing they did, because they did an Ultrasound and found a blood clot about the size of a quarter in my arm. Thankfully it wasn’t in the pick-line itself, so they didn’t have to remove it, I still needed the antibiotics so that would have been bad. The Doctor told me I had to be admitted into the hospital, y’all don’t know how mad I was about that; I was just so fed up with EVERYTHING all I could do was cry. It felt, like everything bad that could happen to me was happening, NONSTOP! I was just so overwhelmed and tired and just physically, mentally, spiritually drained. I’m pretty sure I cried myself to sleep that night in the hospital. But, it’s weird because the next day I felt so much better. I told my mom, I got the best night of sleep because I didn’t have to wake up constantly to do the antibiotics, the nurses did that. I think my lack of sleep took a big toll on me, so being admitted into the hospital turned out to be a blessing in disguise. I stayed in the hospital for about a week I believe (I’m not sure). At the end, the Infectious Disease Doctor came and told me I had to stay on the antibiotics for another week. So, I go home and all is well until one day when I’m in the room with my mom making jewelry; I all of a sudden start hurting everywhere. I take my pain meds and try to wait it out that night to see if it’ll stop. No such luck, it gets worse, so bad to where my dad had to call an ambulance because I couldn’t even walk. Of course they admitted me (once again). This crisis was real bad, the first few days I couldn’t even walk. Thank God for my dad; he was the one that helped me to the little potty thing I had beside the bed, and I’m 5’10 so that was no easy task. He even came early in the mornings (like 5:30am early). After the first week I was able to get up on my own, then walk all the way to the bathroom. There was one good thing to come out of this, though… The Infectious Disease Doctor came, and told me when I was released I wouldn’t have to go home on antibiotics, the tests came back negative for any signs of the infection!!!!! THANK GOD! I was so happy, I literally starting singing when I told my dad what the Doctor said, nurse in the room and all, lol. In the end, I stayed in the hospital for two weeks. I’ve been out now for a little over two weeks, and couldn’t be happier to finally be off all of those antibiotics. The only thing I have to take constantly is the pill for my blood clot; I’ll have to be on that for three months, but at least it’s just once a day. Now I’m just worried about not having my port, they took the pick-line out when I was released from the hospital, so now if I go into a crisis I’ll have to be stuck over and over again… not looking forward to that at all. At least now that the infection is gone, I can have the port put back in sometime, soon hopefully. So, there you have it! My crazy, at times very scary, journey over the last four or so months. Now do you see why its taken me so long to write a blog?? Well, thanks for reading you guys, I really appreciate it; let me know what you think about all the craziness of my life living with Sickle Cell Disease, in the comments below; and share if you like!! Later Readers!
So, I’ve been in the hospital now for over a week with this sickle cell crisis. I was actually here the week before for stomach pains and vomiting, then I got out that wednesday and had to go back early the next morning..crazy. For those of you who don’t know, Sickle Cell is a blood disorder; instead of my red blood cells being normal sphere (circle) shaped, they’re crescent shaped so they don’t flow throughout the body properly the way they should. When this happens oxygen doesn’t get circulated and this causes extreme pain and swelling. Me and my brother both have Sickle Cell. This crisis was pretty bad, it hasn’t hurt this much in awhile. I had fevers and could barely walk. I’m doing much better now since I’ve had the blood transfusion yesterday, I needed two units of blood. Mine was really low (5.5) and most of it was sickled so the transfusion was definitely needed. Hopefully I’ll be out of here within the next few days. A lot of people never have to be in the hospital in their life, but to me this is normal I’ve been in and out of hospitals since I was a kid. This is why I always say people don’t know just how good they have it in life. If some people had to spend a day in my shoes I guarantee they wouldn’t last to the end. God put this disease in me and my brother life because he knew we would be able to handle it (even though it is still extremely hard to deal with). But there’s no use in complaining about it, I’m still alive and that’s all that matters. Anyway, I’m going to start doing a lot more blogs on my sickness, since it’s such a huge part of my life and not many people know about it who better to get awareness out there than someone with Sickle Cell?? Later readers!