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!

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

I absolutely love this quote! In life, there will always be some people who try to discourage you from your dreams. Whether that be because of your age, or their jealously, any number of reasons, really. As long as YOU keep believing in yourself, and keep your dreams alive, that’s all that matters. There are a lot of dreams of mine that I have yet to reach, because of my Sickle Cell, but I will never stop dreaming and having faith that everything will come together the way that it’s supposed to in my life. I had a dream of being in the healthcare industry, because I want to help people, the way I am helped. I went to school for Medical Assisting and graduated at the top of my class, so I know that it is possible! I may not be working now, due to my health, but I will never give up hope on my dreams, and neither should you!

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.

Make A Change!

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!

Dermatomyositis

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Hey Readers! My how the world has changed since my last blog. Not just things in the world, but also things with my family. If you’re reading this blog, then you more than likely already know that I have Sickle Cell Disease. Well, this post isn’t just about that this time. About 2 years ago, my mother started getting this weird rash on her skin, and it slowly spread all across her neck and chest area. When this first started, we just assumed it was probably caused by something in the soap she used, or maybe from the Clorox she used to wash clothes. Honestly, with how long the rash stayed, we should have known better. Then, she started getting weaker, she would get tired a lot faster than was normal for her. She started having to work more from home because she would just be too exhausted to get around at her job. Thank goodness her boss and coworkers were so understanding, and helpful on the days that she did go in. The final straw was when she could literally barely talk or move. She had so much trouble just speaking, and swallowing was really hard for her. When she would eat or drink anything she had to take her time, or she would literally start choking. There were times at night where she would be asleep and wake up choking on her own saliva, that’s how difficult it was for her to swallow. Because of the issues she had with eating/swallowing she also started losing a lot of weight. I’m so glad my brother and sister-in-law just happened to come down for a visit when she was at her worse, because I really wanted them to see how bad she had become, to be sure I wasn’t just overreacting about her condition. By the time they got here, she was basically bedbound. It was to the point where, she couldn’t even lift her legs to get on/off her bed, I had to help her lift herself up. Even when we went out of town to see her family, she literally couldn’t lift her arms to hug her family. Seeing my own mother that helpless was very scary. Especially if you know my mom, she is not one to just lay around. So, my mom thankfully had an appointment with her Arthritis doctor (she was already diagnosed with arthritis before all of this started) and thankfully, right when he saw her he knew exactly what it was: Dermatomyositis; which is an uncommon inflammatory disease that causes muscle weakness and skin rash. This disease is so rare that fewer than 10 of every 1 million people in the U.S. have it. There is no cure and a lot of doctors still don’t even know about it. Thank God, her doctor just happens to be one of a few that do know the signs of the disease, and how to treat it. He even took pictures to show at the next conference he had. Because of the shape my mom was in, he wanted to start treatment right away, even before doing the biopsy needed to confirm his theory. The first step in her treatment were pills that are normally used for cancer patients, and actually a lot of the treatment she received was what they usually give to people with cancer. So, she started taking the pills, and like I said her treatment was pretty aggressive, so she had to take like three pills a day; and that’s not including the other meds she normally took. One of the side effects from the medicine was blurry vision, but at least she was starting to move around better. After a few weeks of being on the meds, she was able to get the biopsy. I’m so thankful my aunt Brenda was able to be here with her for that. Of course I was there and my dad, but she could just be the little sister who needs help, when her big sister is around and I completely understand that. 20190809_204435They did a minor procedure where they removed a small tissue sample from the inside of her thigh, and she was able to leave the hospital the same day.

Once again, before the results even came back, her doctor already knew that it was Dermatomyositis. Then started the real treatment. She was put on a vigorous schedule of I.V. infusions over the next few months. Mind you, she was going through all of this, and continuing to work from home (or from the hospital, some days).

The medication, of course, came with its own set of side effects, but when we saw the 360 her body underwent, it was worth it. Sadly, there is no cure for this disease, there isn’t even really a set treatment plan, because of just how rare it is. My mother is doing a lot better now, thank God. She just started back on her infusion treatments last week actually, because her body was starting to…for a lack of a better word, shutdown again. For the next 6 months, she will have treatments for one week of each month. I’m just thankful there is at least something that helps her body for now. My mom is such a freaking Superwoman though, she handled everything like only she could. She’s always telling me how I’m the strongest person she knows, dealing with my Sickle Cell…but she is definitely the strongest person I know, so I get it from her!

Made It Another Year!

(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!