Biting The Bullet

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!

So Deceiving

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!

So deceiving

Quote Of The Day

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 End?

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.

Quote Of The Day

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!

Coming To Terms With Having A Disease

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!

Chest Pains…

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!

Living With Sickle Cell During a Pandemic

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)!

Quote Of The Day

“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.