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!

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My first YouTube video!!

Hey Readers! So, I’ve been wanting to start a YouTube channel for YEARS now; but I was very hesitant about it so I just kept putting it off. When I started this blog, that sort of took my mind off doing vlogs for awhile…but every time I get sick it’s so difficult to write my blogs because of all the pain and medications. So, I finally decided to start making vlogs while in the hospital. It’s much easier to talk to a camera instead of having to compose a blog. I will definitely keep making blogs, but I would LOVE if you all could check out my very first video on YouTube. Don’t laugh at my page y’all, I’m still trying to figure out how to use everything, lol. I wanted y’all to be the first to know, because even though I don’t have a lot of followers, the ones I do have are so supportive. Thank you! Leave your comments under the video, and subscribe. Thanks again, y’all! https://www.youtube.com/watch?v=RFy_SPGPYIo 7686b2024ccd179ef301ed4d50c16c06

Optimistic and Ready For The Future!

Hey Readers, this blog is just going to be a little update of what’s been going on with me lately. Well, as some of you may recall, I was having very bad stomach pains for awhile. It was to the point where I was constantly in the hospital. Well, they finally figured out that it was the medicine they had me on that was causing the problems. Once we got the stomach pains under control, I was actually out of the hospital for a while, and doing good. I was able to finally plan something and not miss it because I was sick. I went to Orlando with my family, for a nice little visit with some of my family there. It was great to finally be out of the hospital, and doing things that are so simple but so enjoyable at the same time. I had a great time there. The day we left, I started hurting, but thankfully it didn’t get bad until after we had made it home. I ended up having to go to the hospital that same night. I’m still in here now, but I’m being released today, finally. I know this is going to sound weird but, I didn’t mind getting sick this time, I was just so thankful that it happened right after my trip to Orlando, and not during. So when the pain started, I just thanked God that He allowed me to enjoy my trip fully and waited until I got home for the crisis to happen. I know that may sound strange, but when you have Sickle Cell you know that a crisis can happen whenever, wherever. So you’re thankful when a crisis doesn’t happen when you’re out at events, or on trips; because you know it easily could have. You have to know which battles to fight. I’m optimistic though, I think that once I’m released from the hospital this time, I won’t be back for awhile. The reason I was in and out of the hospital before, was because of my stomach problems, not necessarily my Sickle Cell pain. So now that that’s taken care of, it should just be my Sickle Cell now, and I’m learning how to manage it better, also. I’ve been drinking lots of fluids, especially water, which I admit, I wasn’t doing before. It amazes me how, just drinking water can help so much in keeping me from getting sick. Whatever will help, I’m down for! So we’ll see what happens; I’m actually excited about the future, which I admit, I haven’t been for awhile now. Only because I was always sick, and not able to do anything. I think things are going to start changing for the better now, and I’m going to take you all along for the ride! Get ready, I can’t wait!

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George Zimmerman Verdict

As you all know, I usually only write blogs about living with Sickle Cell Disease; but this blog is going to be about something completely different. My heart is very, very, heavy right now; which is why I’m up early in the morning writing this blog. As you all know by now, the jury in the George Zimmerman trial came back with a Not Guilty verdict. I’ve been watching the trial from the beginning and I’m disgusted with the Justice System right now. When is it okay for a person (regardless race or gender) to follow a teenager, and ultimately kill him, for absolutely no reason?……I guess the answer to that question is: now. Being a neighborhood watchman did not give him, or anybody else, the right to stalk and kill a person. The major problem I have with this is that the Justice System is supposed to keep stuff like this from happening, not making it easy for people to literally get away with murder. I’m an African American woman that lives in Florida, and I don’t even feel comfortable leaving the safety of my home right now because of the craziness that is going on down here right now. My heart goes out to the family of Trayvon Martin, I can’t imagine what they must be going through right now. I have an older brother, and I worry about him walking the streets of Florida; if George Zimmerman found Trayvon Martin “suspicious” he definitely would have found my brother “suspicious” too, with his long dreads and urban wear; but if he actually took the time to ASK QUESTIONS INSTEAD OF JUMPING TO CONCLUSIONS, he would know my brother is a highly educated IT Specialist that works for three different Universities, and a great person. But when you have a person like George Zimmerman, they don’t want to ask questions, they already have their own opinions on people. That was evident in the 911 call, when he called Trayvon a “f*#&ing coon”. Regardless of whether or not Trayvon Martin was beating him up, that still did not give him the right to pull his gun and kill that young man; take your beating and walk away! You followed him, he felt threatened (which anybody would), and he defended himself, simple as that. So now young black men, especially here in Florida, can’t even walk the streets of their own neighborhood, let alone anywhere else, without looking over their shoulders and feeling unsafe. So now it’s a crime to be black?!….. As far as the Prosecution goes…I could write a whole blog on their many flaws, I completely agree with Nancy Grace, when she said it seemed like the Prosecutors just laid down and gave up. To me, all the State did was help the Defense win the trial. I hope the coming days are civil ones, because rioting will do absolutely nothing to help the situation. What’s done, is done, now we need to come together as a people and figure out how to change these laws and the way some people, like George Zimmerman, take advantage of laws like Stand Your Ground. I’ll definitely be praying for the Martin family, and for peace amongst us. R.I.P. Trayvon Martin.

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Waving The White Flag

Hello Readers! Well, I’m supposed to be released from the hospital today; I would usually be excited and more than ready to leave, but not this time. The reason I’m not is because I’m still having the same stomach problems. The Doctors all have different opinions on what the cause of the pain is, but they all agree that there is nothing they can do about it. I haven’t ate anything in the last 3 days, and I’ve been throwing up also. I know when I go home it’s only going to get worse. This has been a cycle for the past few years now. I just want one Doctor to come and actually try to figure out what the problem is, not guess. It’s so frustrating and draining coming back and forth to the hospital for the same problem. I already have to deal with having Sickle Cell, now I also have to deal with these terrible stomach problems. It’s one thing after another. I just want to disappear from it all, not have to feel anymore pain or visit anymore hospitals. I’m physically, mentally, spiritually, drained. I know God doesn’t put more on us than we can bare, but I feel like He’s pushing me to the max. I’m not a quitter, but I just feel like curling up in my bed and staying there. I’m only one person, my body can take only so much pain. I’m just tired, tired of it all. Sorry this blog is so gloomy, but it’s how I’m feeling right now, so…..

Life Lessons

Hello Readers! I hope all has been well with everyone. As for me, well, not so much. I’m still in and out of the hospital, due to the Sickle Cell Crisis’s I’ve been having; and now with my stomach problems on top of that, it’s almost impossible for me to stay out of the hospital for any long period of time. I’m trying to stay positive though, hopefully I’ll get a break from being in the hospital soon…fingers crossed. Anyway, I’ve really been trying to decide on whether or not I should write blogs when I’m not in the hospital and sick. I mostly only write when I’m hospitalized, but I think I’m going to change that (whenever I’m finally out of the hospital, that is). But, I didn’t want to wait any longer to write a blog, so I just decided to do another one while here. I mean, this IS supposed to be about my trials and tribulations of living with Sickle Cell, and that definitely includes being hospitalized so…..well, I wanted to just put my thoughts out there, and see what you all think. It seems the more I get sick and therefore have to be hospitalized, the more I think about life. Not just my life but life in general. When you’re stuck in a place of no forward motion (and for me that means not being able to move on in life because of my sickness) you’re really able to have a greater respect and appreciation for life. It’s funny how, when you’re in the mist of living your day to day life, you don’t realize how blessed you truly are. I feel like, because I’m constantly sick and in the hospital, my life has come to a standstill, in a metaphorical sense, that is. I find myself daydreaming about doing things that would seem, pretty mundane to others. Like going to church, spending time with my friends and family, going out, working…don’t get me wrong, I’m not depressed or feeling sorry for myself, I just miss the act of actually LIVING life. I know there are people out there who has it worse than me, so I don’t have a right to be depressed or feel sorry for myself. I’ve really just been trying to take everything that has been going on with me, and examine it all and process it, so that I can receive the lesson that God has for me. It would be easy for me to just give up, and expect my life to always be this way, but I truly believe that in going through all that I am going through, He is preparing me for something greater to come. What that is, I have no idea; this of course, doesn’t mean that after I’m finally feeling better something great is going to happen, and I will never be sick again, of course not. I’m a realist, I know that this disease will be with me, and a part of my life, until the day I die. But I also know that, this isn’t it for me. When you’re sick so often, and have a lot of scary moments, what with: getting dangerous infections, possible blood clots, extreme crisis’s, surgery, blood transfusions, etc…of course, you think about death. When I think about death, it’s not something I fear, I just have a great amount of respect for it. I know this is my one and only life, and if this is where I’m supposed to be in life, then so be it. As long as I’m still able to live, I’m happy. Well, thanks for reading; so glad I did this blog, I just wanted to get that off my chest. Feel free to leave your comments, later Readers!