My daddy has been gone for 1 year, 11 months and 30 days, exactly. 729 days. I still just can’t comprehend how my dad is no longer in this world. He was my very own hero, my Superman. How can Superman be gone? The way I feel inside will never be healed; I’ll forever have a huge hole in my heart. This is a different type of pain. I know he was so sick, and suffering because of it, so I just try to think of him no longer suffering. I’m just rambling, but I needed to acknowledge him in some type of way today. I know he’s still watching over us though, so I try to take some comfort in that. I miss and love you so much, Papabear. I’m trying to take better care of myself, because I know how hard you stayed on me about that. Mom, TJ, and the rest of us are going to continue on strong, because you wouldn’t want nothing more than for us to live life to the fullest. Okay, I’m done rambling, the rest I’ll do in my journal, if needed. Love you so much, dad. Be at peace.
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 Readers! Praying that everyone is doing the best they can during this panoramic. I have been doing well with my social distancing, but my health is another story. My health has been slowly declining to the point where I’ve had 4 very bad Sickle Cell crisis, back to back. I was actually doing really well, I hadn’t been in the hospital for a little over a year, and I was feeling good; now, not so much. This wouldn’t be so bad if I didn’t have to endure all of these crisis’s at home. Due to the panera bread, I haven’t been able to go to the hospital; not because they won’t admit me, but because I’m scared of catching the virus. Even when Covid-19 wasn’t a thing, I caught infections MANY times just from being in the hospital; it just became another part of the treatment in the hospital. My immune system is that compromised (I don’t want to say weak, because it has obviously done a hell of a job fighting each and every virus away). With that being said: I just don’t want to risk going to the hospital and catching Covid. So now, because I’m not getting the proper treatment I need, I just keep getting sick. My body is working overtime trying to heal me, and my hemoglobin (red blood cells) are so sickled now from not having any blood transfusions, that they don’t have time to be replenished between crisis’s. I keep telling my Primary Doctor, that I need a blood transfusion. She talked to my Hematologist and he said my hemoglobin wasn’t low enough for one. Usually when I’m in the hospital, they transfuse me when my hemoglobin level is a 6.1 or lower. When they checked this time it was a 6.7. Mind you, that’s still low! So, it really upsets me that I keep having to try to get them to understand that even though I’m not going to the hospital, I am having pain crisis just as bad as the ones I get hospitalized for. I know my body, I can literally feel when my blood is sickling. About a week ago, I had an appointment with my Hematologist, so I made sure to go, even though I’m still hurting. I get there, and of course I’m in even more pain now, and they can definitely tell. He asked if I was going to go to the hospital, and once I adamantly told him no, he seemed to realize just how much I’m against that now. So, he finally told me that the next time I started hurting, to call the office so that he can set something up, outside of the hospital. I was going to call to set something up, but with the way my body has been feeling, I honestly don’t think one day of treatment somewhere will do much. I’m going to just have to suck it up, and go to the hospital. When your body is in constant pain, it is incredibly draining mentally and of course physically. I hate it. I just want to have a nice, pain free day. I’ve talked to several different people whom also have Sickle Cell, and have been in the hospital. They have all said that the hospitals are doing a great job of keeping all the patients safe, so I’m slowly but surely becoming more comfortable with the thought of being in the hospital again. I was hoping to get vaccinated before my next hospitalization, but with the way my body is set up right now, that’s definitely not going to be the case. Speaking of the vaccine…that’s another thing that’s been on my mind lately. I was against getting the vaccine, at first. When I had my appointment with my Hematologist though, he changed my mind. Dr. Blyden is a great Doctor, and I trust his judgement on this subject more than my own; so when he said he definitely recommends that I and all Sickle patients get the vaccine, I’m going to trust his judgement on it. Especially when he said that people with SCD don’t do well at all, health wise, when they catch Covid. He said it in a way to not scare me, but I know he meant a lot of them have died from it. Well, I’ll see how I’m feeling in the next few days, and go from there. Remember to stay safe, and cautious during this panini, readers!
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!
Hey Reader’s! 2020 has really been a year of tests in both physical and mental health, it seems. So, I thought this quote was very fitting. Don’t give up, don’t let all the negativity in the world corrupt you. Know that this too shall pass, even when it seems like the finish line is nowhere in sight. God is in control, and the final say is always His! You got this!
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.
We are all different. Don’t judge, understand instead. Roy T. Bennett, The Light in the Heart
Hey Reader’s! It’s sad that in 2020, this concept is still not accepted by all. I feel like every time humanity takes a step forward, something happens that pushes us right back. We can’t give up faith that changes will come, though!
Hey Reader’s! Some things people don’t really think about when it comes to living with a disease: is the fact that the person living with that disease, has to first come to terms with having it. In my case, Sickle Cell is a hereditary disease, so I was born with it; that doesn’t mean I just automatically accepted it. When I was younger I just assumed I was normal like everyone else, which I am, but health wise, I’m not. I would always go about my daily life when I was younger, without a care in the world. I never worried about the temperature, staying hydrated, getting sick, etc. I mean I was honestly too young to really think about that stuff, but it wasn’t just that, I just didn’t see the need for it. The moment I came to terms with the fact that I had Sickle Cell, and wouldn’t be able to live a normal life…I can remember it like it was yesterday. I was in the 5th grade, we were in the middle of class when one of the school administrator’s came in. She told the teacher that she was looking for students whom the teacher thought were good, to go on a field trip. They both started looking at us students, and when the admin pointed me out, the teacher immediately told her no because: “she’s a good student, but gets sick and may not make it”… There is no way to accurately describe just how that made me feel. I knew I got sick sometimes (back then it wasn’t often), therefore missed days and a few other field trips, coincidentally. But up until that point, I never grasped the type of effect this disease would have on my life, and all of the limitations I would have to face, because of it. I feel like that year: 1997, was the year my carefree childhood ended. Up until that moment I lived my life like there were no consequences to my actions. That was my reality check. It just sucks that I had to learn something so life changing at such a young age; it was something that needed to be learned, but dang…I’m not going to say that from then on I knew where to draw the line for what I could and couldn’t do, because that’s just not the case, at all. But I did understand from then on that I wouldn’t be able to live a normal life, like the majority of people. In one life changing moment, I realized that I wouldn’t be able to do all the fun school activities, (like go on field trips) act as carefree as my fellow school mates, be looked at as just another normal kid…the list went on and on in my mind. For years after that, I still struggled with balancing school/school activities, and knowing when I needed to just rest. But, I definitely understood that I had a disease that would put limits on every area of my life. Sobering. The Lord put this disease in my life for a reason though, so I deal with it and keep on pushing!
My Life Living With Sickle Cell 