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!
Quote Of The Day
I love this quote, because as my fellow Sickle Cell Warriors know: we don’t have a choice but to get back up and continue the fight. Hey Readers, hope you all love this quote as much as I do. Be encouraged!
Just Let Me Vent!
Hey Readers! I’ve been sick a lot lately, so I haven’t been able to blog the way I would like. Not to worry though, I’m back on my writing now, so I’ll be updating you guys a lot. This blog is basically going to be me venting, so bare with me. Well, as you all know by now, I have Sickle Cell Disease; and it’s very true that in a lot of ways I’m not able to do what other people can. I get that – hate it – but I get it. The problem I have with this is when everybody treats me like I’m going to literally break if I try to do ANYTHING! I understand that I have to pace myself when doing things, but dang!… that doesn’t mean my life should come to a complete halt and sit around doing nothing day-in and day-out. I don’t think people really understand how demeaning that is. Don’t get me wrong, I know that when someone does this to me, it’s done out of love; but I’m a grown woman, it feels terrible to always be looked at as less than. I’m mostly seen as this sickly person that needs to be looked after, it just sucks… I try not to let stuff like this get to me – because once again – I know it’s not done in a malicious way; but I’m only human, so of course it does get to me at times. I mean really, how old do I have to get before people start seeing me as an adult?? Logically I know that my age isn’t the problem, it’s the sad but very real fact that I have a disease that is killing people daily. So, I guess all I can do is understand the reason I am treated the way I’m treated, but also continue to try getting them to understand my point of view. Writing these blogs also help, it’s my way of venting and getting things like this off my chest. I’m not mad though, more frustrated than anything. I love my family to death though, so I can’t hold this against them, when I know they’re just trying to protect me the best way they know how. Alright Readers, I’m going to keep this blog short. Later guys!
My Easter Sunday
Hey my fellow Sickle Cell Warriors, and my lovely Readers! I just wanted to do a quick blog updating you all on how my hospital visit is going; this won’t be too long because I’m going to be doing a vlog soon also. Well, sadly I’m still in the hospital, I’ve been here now for a week and I’m sooo ready to leave! I thought for sure I would be leaving today, but of course, that’s not the case. The Doctor put me on a Magnesium I.V. drip, so I know I won’t bee going anywhere today. Hopefully tomorrow (fingers crossed). As you all know, today is Easter; I was really looking forward to being home with my family for today, but that’s not the case. I knew I wouldn’t be well enough to go to church or anything, but I would at least be able to spend Easter Sunday with my family, and have a nice big dinner with them. But, as my Warriors know all too well: Sickle Cell Disease has a mind of its own, and could care less about what we want to do, or have planned. So, here I am, alone and in the hospital on a holiday (once again). There is a bright side to this though… my parents came to the hospital, which I kinda figured they would. But when they got here, they had a gorgeous vase of white lilies and roses for me! They are so pretty, and the smell has the whole room smelling good. They also got me a big chocolate bunny, anyone that knows me, know I love chocolate. I know to some, this may not sound like much, but when you’re cooped up in the hospital with absolutely nothing to do, and you’re feeling down about being there, the littlest things can make you smile. Plus I don’t get flowers when I’m in the hospital, because I’m always there. Sadly, I’m not the only one that’s sick today: my brother is also sick. He started hurting today, and I think they said he was hurting all over, too…..but my brother is so hardheaded! He never goes to the hospital, he just stay home in terrible pain. I don’t know why he does that, especially when he is always lecturing me about going to the hospital. Oh well, I just hope he gets well soon, I hate when my brother is in pain, especially since I know exactly how bad that pain can be. Anyway, I hope you all had a great Easter Sunday, and to all my fellow Warriors: STAY STRONG!
Sickle Cell Disease Crisis In The Hospital Video/Vlog
Hey Readers! I just uploaded another video for you all on my YouTube page. Check it out and let me know what you think. Don’t forget to subscribe, like, and comment!! This video wasn’t all that long; I just wanted to let y’all know what’s going on with me while it’s happening, not months later. Let’s get Sickle Cell Disease awareness out there people!
Quote Of The Day
Hey Readers, I’m going to start back doing my Quote Of The Day, blogs. I really enjoy reading and finding the right one, I really hope you all enjoy them as well. When I read this one I could really relate to it; I may cry a lot when I’m in pain from a Sickle Cell crisis, or from frustration, but that by no means makes me a weak person, nor my fellow SC Warriors.
The Crazy (at times scary) Last Four Months of My Life!!
Hey Readers! Well, first let me say thank you to everyone that read my last blog, and followed the link in it to my YouTube video. As I said in my last blog, that was my first of hopefully many videos about Sickle Cell Disease. I was VERY hesitant about putting myself out there in such a personal way for everyone to see, but ultimately I’m happy I decided to go through with it. I will definitely be doing more in the near future. I feel there isn’t a big enough spotlight on Sickle Cell Disease, so who better to advocate about this disease than someone living with it? Anyway, this blog is about what’s been going on with me these past few months. I haven’t been writing blogs lately because I’ve been extremely sick. I’m use to having my regular Sickle Cell pains, but it was completely different this time. It all started about four months ago, I started feeling really bad. It was nothing like the regular pain I get, I just felt real lousy for some reason; I thought maybe I had the flu or something because my throat was really sore, and I felt extremely weak. But one day I was in bed still feeling bad, when (out of nowhere it seems) I started hurting. When that happened my family told me I needed to just go to the hospital; it’s a good thing they did too. When we got to the ER, they took me to the back right away, when the Doctor came he literally took one look at me and told my dad he was going to admit me into the hospital. That has never happened to me before, they usually do blood work and give me pain meds before they decide to admit me. But when the nurse came in to setup the I.V. and stuff, she looked at me and said “oh yeah, I can tell you in pain and dehydrated”. Turns out, the whites of my eyes were completely yellow, meaning I was extremely dehydrated; I didn’t even know until her and my dad pointed it out (I’ll put a picture in of it so you all can see). Even with my eyes like that we still just thought I was having a regular Sickle Cell Crisis. So, they admit me and have me on a lot of I.V. fluid and my regular pain meds. But I still felt terrible, and my mouth was completely dry, I literally had no saliva in my mouth, I couldn’t even swallow without drinking water first, it was that bad. So of course feeling the way I was feeling, the thought of eating wasn’t even on my mind; and of course that’s no good. A few days later the Doctors came, and told me I had a very serious infection, which is why I was feeling so terrible. I didn’t realize just how serious it was until, a Cardiologist came and said they had to perform surgery to see if the infection had spread to my heart, and if it had I would need a new heart valve. The next morning they performed the procedure, and thank God, the infection hadn’t spread to my heart. But, unfortunately, my kidneys hadn’t faired as well. A Specialist came and told me I may have Kidney Failure, so they did some test and thankfully they weren’t failing; but he said I was extremely malnourished and it was affecting my kidneys. So, they had a Dietician come and put me on a protein drink, because I wasn’t eating right. So I’m thinking okay cool, give me the I.V. antibiotics, the meds, the protein drinks and breathing treatments (I also wasn’t breathing too good) and I’ll be okay….nope. It turns out they had never seen an infection like mine (they didn’t even have a name for it!) so the antibiotics weren’t working. They kept changing them to see what helped. Then, like I’m not already going through enough, an Infectious Disease Doctor came and told me they need to do some test to see if the infection was in my port (that’s the device they placed in my chest under the skin to access for I.V.’s and to draw blood). So, they do some blood work, and of course the test came back positive, it had spread to my port; so the Doctor said it had to be removed. I outright refused the first few days, he came back every single day asking me if I would allow them to remove it, and I kept saying no. Now, let me explain: my port is a vital part of being able to deal with Sickle Cell. When I have to go to the hospital, instead of them sticking me with a needle literally all over my body trying to find a vein (including in my neck), they just access the port. It makes a HUGE difference in my life; and mind you, the same Doctor told me I needed my port removed like two years ago, and when they removed it the port wasn’t even infected! So this time around me and my family are super hesitant. Even my Hematologist didn’t think I should. But that all changed one day when I started running a high fever; I felt terrible and was in and out of it that whole day. The Doctor came, and told me I was risking my life and could die, then my Hematologist came and basically told me I was going to have my port removed first thing in the morning. So when my Hematologist whom I’ve known for years now, and trust looked worried and insisted on an emergency surgery for the very next day, I knew it needed to be done. So, the next morning they tried to place a regular I.V., which absolutely was not happening, so they had to put a pick-line in my arm right before the surgery in order to give me anesthesia. The surgery went fine, they removed the port and this time the infection had spread to the port so it was all for the best. My fever went down after that, but they still didn’t know exactly how to treat the infection. So, I was in the hospital for a whole month dealing with all of this and my regular Sickle Cell pain. At this point, everyone including the Doctors are trying to figure out how I can get out of this hospital. They kept trying different antibiotics and the Infectious Disease Doctor told me one day, that he was trying to get me approved for this new drug, that hadn’t even been approved yet by the FDA (just an idea of how serious this infection was); but until then, they were going to release me from the hospital as an outpatient. I was just happy to be leaving the hospital so I would have agreed to anything! So they release me from the hospital a few days later, on two I.V. antibiotics I would have to administer to myself five (yes five) times a day and one antibiotic pill I had to take twice daily, for twenty-one days. A nurse came the first day to show me how to do everything, but it was real simple for me because I went to school for Medical Assisting. The problem wasn’t doing it, it was how often I had to do it. I literally didn’t get a full night of sleep during the whole time because every four hours or so, one of the antibiotics had to be administered. I started getting confused with simple things and forgetful; when I had a little over a week left of the antibiotics I started feeling a pain in my arm where the pick-line was. I told, the nurse about the pain, and that the I.V. wasn’t running as fast as it should have been. She told me I needed to go to the ER right away, I absolutely did not want to but when I told my parents what she said they made me go. I guess it’s a good thing they did, because they did an Ultrasound and found a blood clot about the size of a quarter in my arm. Thankfully it wasn’t in the pick-line itself, so they didn’t have to remove it, I still needed the antibiotics so that would have been bad. The Doctor told me I had to be admitted into the hospital, y’all don’t know how mad I was about that; I was just so fed up with EVERYTHING all I could do was cry. It felt, like everything bad that could happen to me was happening, NONSTOP! I was just so overwhelmed and tired and just physically, mentally, spiritually drained. I’m pretty sure I cried myself to sleep that night in the hospital. But, it’s weird because the next day I felt so much better. I told my mom, I got the best night of sleep because I didn’t have to wake up constantly to do the antibiotics, the nurses did that. I think my lack of sleep took a big toll on me, so being admitted into the hospital turned out to be a blessing in disguise. I stayed in the hospital for about a week I believe (I’m not sure). At the end, the Infectious Disease Doctor came and told me I had to stay on the antibiotics for another week. So, I go home and all is well until one day when I’m in the room with my mom making jewelry; I all of a sudden start hurting everywhere. I take my pain meds and try to wait it out that night to see if it’ll stop. No such luck, it gets worse, so bad to where my dad had to call an ambulance because I couldn’t even walk. Of course they admitted me (once again). This crisis was real bad, the first few days I couldn’t even walk. Thank God for my dad; he was the one that helped me to the little potty thing I had beside the bed, and I’m 5’10 so that was no easy task. He even came early in the mornings (like 5:30am early). After the first week I was able to get up on my own, then walk all the way to the bathroom. There was one good thing to come out of this, though… The Infectious Disease Doctor came, and told me when I was released I wouldn’t have to go home on antibiotics, the tests came back negative for any signs of the infection!!!!! THANK GOD! I was so happy, I literally starting singing when I told my dad what the Doctor said, nurse in the room and all, lol. In the end, I stayed in the hospital for two weeks. I’ve been out now for a little over two weeks, and couldn’t be happier to finally be off all of those antibiotics. The only thing I have to take constantly is the pill for my blood clot; I’ll have to be on that for three months, but at least it’s just once a day. Now I’m just worried about not having my port, they took the pick-line out when I was released from the hospital, so now if I go into a crisis I’ll have to be stuck over and over again… not looking forward to that at all. At least now that the infection is gone, I can have the port put back in sometime, soon hopefully. So, there you have it! My crazy, at times very scary, journey over the last four or so months. Now do you see why its taken me so long to write a blog?? Well, thanks for reading you guys, I really appreciate it; let me know what you think about all the craziness of my life living with Sickle Cell Disease, in the comments below; and share if you like!! Later Readers!
