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!

Feeling Good, Feeling Great!

Hey Readers! So glad to finally be writing again! I have been so sick, and family members have been having a lot of health problems too, so my blog had to be pushed to the back burner. Thankfully, for the past 3 months I’ve been out of the hospital, and feeling a lot better. 2016 and most of 2017, were really difficult years for me, health wise; so to finally be feeling better, and getting back into doing things that I love (like writing), is a huge blessing to me. I know to many people, being out of the hospital for 3 months sounds like nothing, but when you’re literally in and out of the hospital almost every two weeks, it’s a HUGE deal. The sad thing too is, when I was out of the hospital, I still wasn’t able to do anything because I would be too weak and recovering from being hospitalized; by the time I recovered, I would end up being sick again. So, it was just a vicious cycle for awhile. Now that my health is finally getting a lot better, I’m so excited to start working on things I’ve been wanting to do for years, now. That’s the reason for this blog today: to tell you guys about a book that I finally have a chance to work on! Of course, I can’t say exactly what the book will be about, just know that it does revolve around Sickle Cell Disease. I was going to do a book about my life living with SCD (which I still plan on doing) but I think the book that I’m starting to work on now is more important, and will be helpful to people living with SCD, and family members that may help care for them. This book is going to take a lot of time and effort, but I’m so ready to dive headfirst into this project. This book is going to require me to interview a lot of my fellow Sickle Cell Warriors, and some Doctors as well, so now that my health is starting to cooperate with me, I can get started on the interviewing process. I’ve already started drafting up information for the book, and the questions to ask, so everything’s off to a great start. I want this book to be really informative and helpful, because there is such limited books out there on Sickle Cell Disease; trust me, I’ve looked. Of course, this book is going to take some time to write, because of all that has to be done, but I wanted to at least let you guys know about it, especially my Warriors. As soon as I have all of my questions lined up, I will start lining up Sicklers to interview. If you want to be interviewed, just leave a comment on here for me, or just message me on Facebook: Tyeshia Rodgers. While working on my book, I’ll also be writing more blogs; I just feel so energized and good, after literally years of being so sick, ALL THE TIME, I have so much stuff I want to get done. I know I need to pace myself though, and continue doing what I have to do, in order to stay out of the hospital. I’m doing a good job so far, and hopefully will continue to do so. Okay Readers, that’s all for now, but expect another blog pretty soon!IMG_20171123_184202_502

I See Nothing Funny about Sickle Cell Disease

Hey my lovely Readers! Well, this blog is going to be a little different, so bare with me while I vent (just a little…maybe). Yesterday, a fellow Warrior, Brittani Burrage, shared a video that really disturbed me. I will definitely post the video here, so those of you that haven’t seen it, may do so. Now, before I go any further, let me first say: everyone is entitled to their own opinion, this just so happens to be MINE!! The video is of a little clip from the ending of the show: Key & Peele; for those of you who don’t know, that’s a comedy show. In the clip, one of the men (I don’t remember which is Key, and which is Peele) makes a joke about, how he’s glad to be mixed because he knows, somewhere in the world, there’s a black dude sitting at home with a little d**k and Sickle Cell. Where do I begin on the many things I find wrong, with this little comedy, “joke”… My first and biggest problem with this little comedy piece is: the only time we EVER hear anything about Sickle Cell Disease, is when it’s being joked about. Not only is it being joked about, but all the “jokes” about SCD are negative! If you’re going to mention SCD, why not do it in a positive light?? Like in the movie with Liam Neeson: A Walk Among the Tombstones. That’s the one, and only, movie where I’ve seen SCD portrayed the right way. Negativity to me, generates more negativity; so when you joke about something as serious as SCD, or ANY disease, in a negative way, all you’re doing is making people think of other people with that particular disease as less than, or not normal. I’m just like everyone else, why should I be made to feel like I should be quarantined, or something, just because I’m living with SCD?? The other problem I have with this is: we’re dying every single day, my living with Sickle Cell, isn’t a joke. The things we Warriors have to go through on a daily basis aren’t funny. Why is it that whenever you hear about Cancer, you hear about how brave the people are and how we need to raise awareness and money for research to find a cure? The answer: THAT’S WHAT YOU SHOULD HEAR!! They are brave, and courageous, and fighters, and guess what…so are people living with Sickle Cell Disease; but because ignorant people decide to “joke” about, and portray my sickness in a negative light, that’s what a lot of people feel about SCD, and I’m tired of it! I really don’t even want to go into the fact that, people still, in 2015..think of SCD as an African American disease. I have news for you my friend, since you’ve apparently been living under a rock for years, it’s not! I know people in the Sickle Cell community, who are so tired of this stereotype, because they are NOT African American, but have the disease. I know there are some people who won’t agree with this blog, including some of my fellow Sickle Cell Warriors; and that’s completely fine, like I said: this is just my opinion. I do know that some Sickler’s feel like well, at least they’re talking about SCD, and bringing awareness to the disease; my thoughts on that is, if you’re going to bring awareness to a disease, do it without causing hurt, and in my opinion, shame/embarrassment to people with the disease. Imagine, if the same show had done a great comedy skit about someone living with Sickle Cell…instead the writers chose to be followers, and were negative like everyone else. Who knows what type of shame, or sadness, that could have brought on maybe some young person living with SCD, or anyone with Sickle Cell…I guess they don’t think about things like that, or care. Okay Readers, I just wanted to share my thoughts on this, because it was really weighing heavily on my mind. Thanks for reading, maybe someone who has negative feelings toward people with Sickle Cell Disease, will read this and have a change of heart. Later!