Hey Readers! Welp, I made it! I’ve officially made it to my mid 30s! Y’all don’t understand what a blessing this is to me. Ever since I was a little girl, and understood what it meant to have Sickle Cell, I was told the lifespan of a person with SCD was early 30s. Thankfully as the years have gone by, that age range has become older and older, but to me I was just stuck on those early statistics that basically told me I would be dead by my early 30s. That’s just how my younger mind worked then. Also, with the way I was always sick, and having so many health problems due to my disease, it felt like that’s what it was going to be in my case. Thankfully as the years went by, I became more faithful in the Lord, and in His will. Even though that was the case, the thought was always in the back of my mind. The fact that I’m now officially in my mid 30s, 35 to be exact, is just amazing to me, and a blessing. I’ve been trying to get out of the mindset of thinking that my life will be over at such a young age, and I have been having a much better outlook on life lately. With that being said, please don’t think of this as something that made me super depressed or even sad. It’s just what it was for me. I felt like there was a high chance that I wouldn’t make it pass a certain age, since I was a child, and that’s just how it was. Okay, I just wanted to share my joy of making it to this amazing milestone in my life. I wish my daddy was here to celebrate with me, but I know he’s always with me spiritually. My guardian angel. Okay, bye guys!
Hey Readers, I hope everyone has been well. I haven’t been able to write a blog in a while, because…life, but I’m ready now. This pass month has been really difficult for me, I’ve literally been in crisis this entire month. Because of how poorly the hospital now treats people with Sickle Cell Disease, I made the decision to just stay home and endure the pain. In doing so, I had two of the worst crises I’ve had in years. My limbs started swelling up, I could barely walk, and the pain was unbearable. The fact that I would rather go through all of that, should give you a bit of an idea of how badly the treatment at the hospital is now. Towards the end of my second crisis (I literally had 2 crises, back-to-back) I thought I was finally coming out of it, so I decided to try to go to the Sickle Cell Day Clinic to get help for what I thought were the final stages of the crisis. I knew I was tired, and out of breath, but I just thought it was the normal way I usually feel after being sick. That morning while I was trying to get ready, it was so difficult for me to breath, but again, I thought it was normal. I thank God for my mom, because she got up early just to try to help me get ready. Good thing she did, because right as I was getting ready to go downstairs to my Uber, I just couldn’t breathe. I couldn’t take any breaths in, I started getting dizzy and seeing spots, my tongue started going numb…I literally felt like I was going to die, literally. I was able to gasp out “call 911” to my mom, which of course she did. I had to collapse right there on the hallway floor and wait for the paramedics to come. I thought I was going to die right there in the hallway, because I was that against going to the hospital in the first place. I felt so bad for my mom, she was downstairs waiting for the ambulance and kept yelling upstairs to make sure I was okay, but I couldn’t answer at first, I was just trying to take deep breaths. So, the paramedics arrived and had to help me downstairs to the stretcher and took me right to the hospital. Now, being in the ER is never the problem, it’s once they admit you that the problems arise, but I digress. So, while I was in the ER, they accessed my port and took blood and gave me meds for the pain. When my blood test came back is showed that my hemoglobin was super low (like it always is) 6.4. The ER doctor after seeing my hemoglobin ordered CT scans and X-Rays to make sure nothing else was wrong, they did a bunch of tests and thankfully they all came back fine. I, of course, was admitted and this is where the trouble always begins. So, in the ER they gave me one dose of dilaudid, and I was down there for over 7 hours. I told my nurse that I needed another dose, and she took it upon herself to not tell the doctor, because in her words: “I knew you were going to be admitted anyway, and they’ll give you your meds then.” Even though when you’re in the ER you are supposed to be given meds every hour, if needed. At least that’s how it is for people with SCD. So, of course, by the time transport comes to take me upstairs, I’m in a lot of pain again. Mind you, hospitals are always freezing, so that just makes the pain worse. I get upstairs and the nurse I had was actually super nice. He asked me what they usually give me when I’m in the hospital, and what I take when I’m at home. I could tell immediately that something was wrong, when he started asking me all of this. He said that the doctor only ordered me oral pain meds, so basically what I take when I’m home. And here lies the problem. Why in the world, as a person with Sickle Cell Disease, would we want to leave the comfort of our home, to go to the hospital and be given the SAME EXACT TREATMENT I.E. PILLS, as we would at home?!?! Obviously, we go to the hospital because our oral pain meds at home are doing absolutely nothing, and we’re in too much pain. It seems to me like that would just be obvious! But once again, I digress. So, after he told me that, he said that he would just give me the oral medication, and in an hour call the pain management to let them know it’s not working. Thankfully, the doctor, who, I do think it’s worth noting was an African man, came in and immediately saw that I was in pain. He looked shocked when I told him they had me only on pills. He changed me to the PCA pump. For those that don’t know, that is just a machine that has whatever type of I.V. pain medication the doctor prescribes, and it releases a little dose after a certain time limit, when you press the button for it. I was happy to get just that, because I was starting to hurt so badly, I would have taken anything. But for my Sicklers out there, you all know that the way the system is set up now is just wrong. The hospital now has a one treatment plan fits all system, which is just not compatible with all patients. The way they used to give meds was by how high your pain level was, along with pain med tolerance. That’s why they would have your personal doctor come to the hospital and prescribe what pain meds you needed. My Hematologist would come and thoroughly check me out then change my meds based on how I was doing. I normally got dilaudid 2 or 3 mg (once again depending on how badly I was hurting) every 3 to 4 hours. I was on this regimen literally for years, and for the most part, it worked for me. Now, you don’t get to see your regular doctor, they have this “pain management team” that honestly manages nothing. They give everyone the same exact treatment, like we’re robots. Also now, one of the first things they ask you when you get up to your room is: “Do you have any pills with you?”. Wow…what a way to make a person feel like the lowest of the low. I, at first, thought the nurse that asked me that the last time I was in the hospital was just being mean, because she had a slight attitude. But for them to ask me the same exact question during a different hospital admittance, by a completely different nurse, lets me know that’s part of their protocol now, which is just disgusting to me. Anyway, all Sicklers’ pain isn’t the same, the PCA pump absolutely does NOT work for me. This is why I stayed home for a whole month in my bed, in unbearable pain and almost died because of it! The treatment we as people with SCD get is unbelievably sad and disgusting. It’s like the medical system isn’t even trying anymore to help us. Let’s just put them all on a PCA pump that delivers the bare minimum of pain meds, and they can either take it or leave it. And do you know what most of us are deciding to do? Leave it. We’d rather stay home and possibly die, than go to a hospital and be treated like drug addicts. I’m so tired of it. Thank goodness like I said, I was in the last stages of my crisis so the pain wasn’t even as bad as it could have been. Anyway, I was put on the pump, which barely touched the pain but it helped a little more than the oral meds so I just took it (not like I could have done anything about it). I got my first blood transfusion that same night. It helped with the dizziness and lightheaded feeling I was experiencing, but for some reason my blood just kept dropping. They initially thought I was bleeding out somewhere, so they did more tests like checking my stool and urine, and thankfully everything came back fine. After being on the pump for I believe it’s 2 days, they take you off of it whether you’re still hurting or not (I was still hurting but I refuse to go back and forth with them trying to convince them I’m in pain, I shouldn’t have to beg to be properly treated). So, they took me off the pump and put me back on the pills. Mind you they don’t have a problem raising the dose levels of the pills, the things that some people actually do get addicted to. At one point they had me on 60mg Oxycontin and 15mg Roxy. They fail to realize that being on that high of a dose of oral pain meds is actually what messes up people with SCD. Once we’re released and not on those high doses of pills anymore, it can cause stomach pains, constipation, and I’m sure withdrawals for some also. Thankfully that didn’t happen to me this time. This may be a little harsh to some, but I’m starting to feel more and more like the medical system is trying to do more harm to us, than help us. Take that how you will. After all of this I still needed 2 more blood transfusions. Thank goodness for the African doctor I had, he was the only saving grace while I was there. He was determined to get my hemoglobin to at least an 8 and ended up getting it to a 9.1! I have literally never heard of my blood levels being that high, and all it took was a little effort on a caring doctor’s part. After I got my third and final transfusion, I was beyond ready to go! They kept me one more night, just to check and make sure my levels were fine. Then the next day they wanted to keep me another night, but I asked if I could just leave. I can give myself pills at home, so there was no point for me to stay any longer. I’m back home now, and I’m doing a lot better. I just really hate what the medical system has become for us Sicklers. They do everything they can, it seems, to make us feel like drug addicts, and that’s just not fair to us. We are being punished for literally being born with a disease that we have no control over. And even after staying home sick for an entire month, and almost dying as a result of doing so, I still will not be going back to the hospital unless I absolutely have to. A change has to be made. They are unknowingly (at least I hope it’s unknowingly) killing us, because we refuse to go to the hospital and be treated so poorly. I’m going to try to figure out a way to make a change. Whether that be reaching out to my local congress, getting in contact with my local news stations or speaking with the people at my local Sickle Cell Day Clinic; something! Something has to be done, and I won’t rest until I find a solution! In closing, I just want to say rest in peace to my daddy. He died exactly a year ago today, and my world will forever be changed now that he is no longer here. I love you sooo much, PapaBear!
Talking to my momBlood transfusion 2 or 3My rock, my superwoman.My mom taking my mind off everything!
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!
Hello Readers! I hope everyone’s doing well during these difficult times, and staying safe (continue wearing your face masks, and sanitizing!). This pandemic is sadly, far from over, and I’m sure some of you may be wondering how people with pre-existing health problems are functioning during this time. Well, truthfully: by not doing much of anything. Because my immune system is already compromised, I am already high risk of catching infections (and often do catch them). So, this Coronavirus is a very dangerous thing for someone like me. When the virus first started spreading, my Primary Doctor told me straight up that I was very high risk. Because my skin takes so long to heal, and my immune system is weak, she told me I needed to not even risk going out in public, at all. Even having a face mask. It sucks, but my life is more important than a trip to the store. The only time I go anywhere, is for my doctor appointments, and the pharmacy for my prescription’s. Thank goodness for online shopping! Even with that, I have to be careful. When I order groceries, I request that they leave the bags at the door, before touching anything I put gloves on, and wipe down everything with Clorox wipes. The same goes for my amazon packages: I wear gloves and actually wipe the boxes down, before even opening them. Safety is key. It may seem like a lot, but it’s worth it in my opinion. The most difficult thing about this pandemic, is the fact that I can’t just go to the hospital anymore when I’m having a crisis. I was honestly a little scared of getting really sick, when all of this first started. The thought of being in so much pain, and having to just endure it at home, was a little daunting. Then, of course, it actually happened. I got really sick; my whole body was hurting, to the point where I couldn’t even walk on my own. Thankfully I had my medications, and my family here to help me, so I was able to ride out the crisis at home. It was pretty bad too, I had a fever and the pain was intense and lasted for a little over a week. I knew if my fever got higher than a 101.2, I would definitely have to go to the hospital. It stayed low-grade, and finally went away, so that was a relief. The other problem I have been dealing with since this whole pandemic, is the fact that I can’t get blood transfusions during this time. A huge part of treating a Sickle Cell crisis, is blood transfusions. Our hemoglobin levels can get dangerously low, and this effects us very negatively: less oxygen in the body, causes dizziness/light headedness, and makes us hurt A LOT more. I always know when my blood is low, because I get really lightheaded and tired, and start hurting from the slightest things. Now, with Covid, I can’t go to the Sickle Cell Day Clinic and have them check my hemoglobin to see if it’s low or not. I’ve basically just had to walk on eggshells and be extremely careful with everything I do. I can’t overexert myself, because me getting too tired can cause my body to go into a crisis, I have to be careful of the temperatures I’m in, that too, can cause a crisis…it’s just a lot. I have to do it though, because I can’t afford to be in the hospital right now. How have my other Warrior’s been dealing with this pandemic? I truly hope you all are staying safe, and protecting yourselves (and each other)!
“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.
(Well…I thought I published this the day of my birthday, but apparently I didn’t, so…here you go! A few days late, but it still sends the same message.) Happy birthday to me, happy birthday to me! Well, the Lord has allowed me to see another birthday. Honestly, my birthday is never a big deal to me. Don’t take that the wrong way, I’m very thankful for another year of life. I was literally just sick every single year my birthday came around. It’s also nearly impossible to plan for a birthday, when you don’t know if you’ll be sick or not when it comes around. So, I’m just very low key when it comes to that. This year is a little different for me, though. When I was younger, I always just assumed that I wouldn’t live to see my 30s. Studies showed that people with Sickle Cell lived to their early 30s, at the most. So it was always just in the back of my mind that I would probably die before I turned 30. Now, to be sitting here at age 31, is just a blessing to me. I know the life expectancy of a Sickler has gone up since then, but with the progression of how sick I was getting every year: it still didn’t look that good for me. Thankfully, God has the final say, and because of Him, I’ve made it to my 31st birthday!
I love this quote, because as my fellow Sickle Cell Warriors know: we don’t have a choice but to get back up and continue the fight. Hey Readers, hope you all love this quote as much as I do. Be encouraged!
My Life Living With Sickle Cell 