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!
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
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!
Not All Disabilities Are Visible
Hey Reader’s! So, today I was just brainstorming ideas on different blog topics to write about, and while brainstorming online, I came across this article about someone being judged for having a handicapped sticker. The person looked completely fine physically, so people jumped to conclusions, and thought the person was faking having a disability. A lot of people fail to realize that not all disabilities are seen by the naked eye. The amount of times I’ve been judged based on the way I look alone, is plentiful. The sad part is: most of the judging was from medical professionals. As a person with Sickle Cell, if I’m not screaming my head off in pain, a lot of Doctor’s think nothing is wrong with me. It’s sad, because they are the ones who should understand the most out of everyone. But, the negative treatment by Doctor’s is for another blog (stay tuned for that). I’ve needed to get a handicapped sticker for literally, years now, but one of the main reasons I haven’t is because I know how some people will look at me, and just assume I’m using someone else’s sticker, or lied about being disabled. Yes, physically I look fine, but what people fail to see are the days when I am so sick I can barely walk. Even when it’s not that bad, most days when I go out, I get very tired, to the point where my family usually have to bring the car up close to whatever place we’re at so I don’t have to walk all the way to the car. With a handicapped sticker, that obviously wouldn’t be a problem anymore. I absolutely hate hearing: “you don’t look sick”. Looks, as we should all know by now, can be deceiving. I was actually denied disability the first time, because the doctor who did the exam for it, literally told me I looked fine; then of course, a few weeks later I found out I was denied. The automatic judgement from people never ceases to amaze me. I’m going to stop worrying about what other people think, and just get the handicapped sticker. I’m not hurting anyone but myself by not having it. So please, don’t be so quick to judge someone in the future, because you never really know what that person is going through.
Quote Of The Day
So, I usually don’t have a thought in mind for the type of quote I want to post, it’s just what inspires me in the moment. But, honestly I looked up quotes about trusting the process, this time. I, for one, needed to hear this today. At times, things just seem to be going wrong, but we all just have to realize: these hurdles in life are just there to prepare us for our blessings once we make it through. Trouble doesn’t last always, you will get through it!
Civil Rights Leader John Lewis Remembered
Hey Reader’s. Today we mourn the death of Rep. John Lewis, whom died yesterday at the age of 80. John Lewis played a huge role in the civil rights movement, and was one of the “Big Six” who organized the 1963 March on Washington to help end racial segregation and give economic rights to African Americans in the United States. As a student, his activism really started to show when Lewis took part in the Nashville sit-in movement, which resulted in the desegregation of lunch counters in downtown Nashville. John was jailed several times during these peaceful sit-ins. In 1961, Lewis also became one of the 13 original members of the Freedom Riders. Imagine being one of six blacks and seven whites, whom rode from Washington to New Orleans, in an integrated way, during a time when some states still prohibited whites and blacks from riding together. The Freedom Rides exposed the violence that the government allowed to take place, and did nothing about. John Lewis himself, was beaten by whites during these rides, and was also jailed, once again. John Lewis also became a member of the U.S. House of Representatives, he represented Georgia’s 5th congressional district. Lewis was never one to bite his tongue on the injustices of minorities, and the corruption in the government and was known as a “hard-core liberal” but fiercely independent. Even while in government, Lewis still participated in protests, such as: the boycott of the inauguration of George W. Bush, anti-war protest before the start of the Iraq War, and was arrested for his protests outside the Sudan embassy against the genocide in Darfur…the list goes on and on. The world has lost a true fighter. His activism helped bring change to America, and for that he will be remembered as a true Hero! Thank you for your service, John Lewis. Job well done, now may you rest in peace.
Quote Of The Day
Hey Reader’s. I just wanted to share an encouraging quote today, for anyone who may need it. It’s amazing the darkness and depression some people are able to hide so well. With the news about Tamar Braxton trying to commit suicide, and the worrying tweets Nick Cannon posted, you just never truly know how a person is actually feeling. I pray that they both get through whatever internal battles they are going through. The same goes for all of my reader’s who may be in a dark place in life right now. This too shall pass! But, if you feel you need help, or just for someone to listen to you, please call: 1-800-273-8255 the suicide prevention hotline. You matter!
