HAPPY HALLOWEEN!

Happy Halloween to all my warriors who celebrate! I just love it for allll the candy! Make sure you all are bundled up even with costumes on. Have a great time, but you don't want to be in pain the next day. Be smart with your choices (:

" my no costume, costume lol "

Stay strong,

Morgan 

Appointment Update

Hello!

So I had my appointment two days ago on Tuesday. It went great, amazing!!! My mom went with me, and we took the train over. The office is right down the street from my the station so it's a quick and easy commute. The emergency room where I will use if needed is right around the corner. I met my nurse practitioner who i will be seeing and talking to the most, she was amazingly thorough with all of the information. She was very helpful, and seems like she knows her stuff so far. We came up with a care plan for her to send over to the hospital. It informs them that i am their patient and that i have sickle cell (so I don't get any side eyes, or thoughts that I am lying or a drug seeker hopefully), also the pain medicine they should give first. We decided on Dilaudid, Toradol, Zofran and fluids. I was so happy that I got to be involved in the care plan instead of the doctors in the hospital (who don't know me well) deciding what was best. 

I also got to meet my hematologist, only for a couple of minutes. He seemed nice, and was happy to see that I was doing so well! I will meet with him and talk with him more at my next visit. My new hospital also has a Sickle Cell support group that is patient run with the help of the nurse practitioner and program coordinator, Oh! That's a another thing. They have an actual sickle cell program, with people who CARE about us and are working to make us better. The nurse practitioner, program coordinator, and social worker solely work with SC patients! This is so amazing to me because at my pediatric hematologist its was WAY more cancer orientated, they didn't keep us in the know about any sickle cell programs/events or anything. Anyway, I wanted to let you all know that I am very optimistic about my new facility. I wont see how great they really are until I REALLY need them. 

p.s. I am going to Pennsylvania Hospital now, cant believe I forgot to mention that lol. 

Stay Strong!
Morgan

I'm BACK

Hey guys, so I went down to VSU Homecoming with my aunt I had a good time, I got to see what it's like to be at an HBCU and live that college experience. But now I am back! And I had great talks with people over all of the things I want to accomplish for Sickle Cell! I got so much information and I am feeling so motivated! I can't wait to get things moving, and you all to be there on my side the whole time. But to What wanted to talk about today! 

I had a conversation with a woman who has a teenager with sickle cell. Her daughter was just being able to get back in school, and she has been very depressed. Girls at school don't understand her life, and see her as self-centered, and rude. When she tried to spread awareness they didn't want to hear it. It saddened me to hear this because I was her just a few short years ago. I felt so alone, and like an outsider. NO ONE understood what I was going trough, and simply didnt care too. It was one of the worse times of my life. It is so important to have a support group in your life, people who don't and do know what you are going through. People who you can vent too and learn from. Its so important to feel that love from people because depression is REAL! Being sad and dressed can send you into a crisis so quickly and depression takes LIVES! The good days that is with sickle cell have need to be spent happy and productive. Any teens or people with sickle cell who need that supper please contact me through my email morgkscott@gmail.com.I'm always happy to help and support my fellow strong! Continue to spread love and awareness! YOU ARE ALL WORTHY! 

Stay Strong, 
Morgan

New Beginnings

A week from today is my first doctors appointment with my adult hematologist! I am nervous and very excited at the same time. I set up my appointment and made the transition all on my own. I feel like a true adult, lol. My mom made me do it on my own(which I hated!!!) but I need to be doing these things on my own. I am happy to finally be away from my pediatric outpatient facility. Out of all the people who work in the building, about 4 of them know my name! I have been going there since I was a baby! The others will walk past without even saying hello. It is so unprofessional, and rude. Maybe I am just to friendly, but I feel in private settings, like a doctors office, you should greet everyone or at least smile! But,  I am hoping for a new and brighter beginning!

I have heard so many horror stories about how adult sicklers get treated in the hospital that it scares me. They get sent home with only one round of IV meds, because ER's think we are drug addicts just coming in for the high. How can you look at someone, with this terrible disease, in excruciating pain and deny them treatment? Just because someone is not crying and screaming in pain doesn't mean they are not sick! After so many years of dealing with constant pain you know how to cope and to function with it, and that crying about it doesn't always help. I am still optimistic that I will have a great experience, I have god, my mom, and my KNOWLEDGE on my side. I will be working hard with my doctor to make plans and I will refuse any horrible treatment!

I will be sure to let you all know how my appointment goes next tuesday!

p.s. I created an Instagram page and a Facebook page I will be posting too also! make sure to follow! Thank you all for reading and supporting

Instagram: sicklecellstrong
Facebook: https://www.facebook.com/scddiaries

Stay Strong
Morgan

YES!

YES YES YES YES YES! We got some key help from Khloe Kardashian at the end but it was ALL OF us that did this! Over 100,000 signatures we or got out there, informed people and got those signatures! This is such a big deal! We matter, people care. I  am determined to  keep this awareness running. Brainstorming as we speak, stay tuned I have a lot I want to do!

Stay strong,

Morgan

the blues..

Everytime I come out of the hospital It takes me so long to get back to my normal self. I feel so sad all the time and I can't shake the feeling. I have no motivation to do anything and feel terrible. I feel so disconnected from the world and it takes forever to get back to being me. I wish I could snap back, but this hospital visit really put me in a bad place. :/ need to find something to get me back to normal, happy and functioning again. Any suggestions let me know.

Stay Strong,

Morgan

Someone to lean on

It's great to have great people in your life to hold you up when you are feeling down. I thank my Mom, for talking on the phone with me while I waited to go the ER and coming up and sitting with me everyday, bringing my favorite sick food, and making me walk and shower lol. My dad for dropping what he was doing and taking me to the ER, and being there for me.My sister, for staying the night and being by my side. My Grandparents, and Aunt, Uncle and Cousin for coming to see me. My boyfriend who was with me when I got sick for doing everything he could to get me better.  My Family and Friends for checking up and praying for me! I love everyone in my life, and thank them for everything they do no matter big or small it all means everything to me! 

Stay Strong,

Morgan

the fall...

Sorry for the long period of no posts. This weekend I had my first major crisis all year... It was terrible. I forgot how it was to be in pain. It started Friday night I got a shock through my body and new that i was about to go into a crisis. It started in my shoulders and my chest but stayed ib my back and chest. I cried because I was finally feeling normal and now I was in pain. The pain wasn't that bad Friday night but the pain got worse Saturday I had to go to the ER because I didn't have any pain meds except Motrin at home. I called my parents and was on the way to CHOP. I was in so much pain and nothing could help it, I could barely walk I just wanted to sleep but I couldn't. Luckily the ER wasn't crowded, I was able to get back into a room in the ER in under 30 minutes. There was some confusion wether I should stay at CHOP or go to penn hospital because I am in the middle of transitioning, but I needed up staying at chop because I hadn't been seen by my new doctor yet. The overall experience in the hospital wasn't bad. It will *hopefully* be my last time in the Children's Hospital because I am transition to adult. 

Everyone was really nice and loved everything I was doing for sickle cell and my goals to the future, they said I was a sweetheart, and the coolest patient which made me feel good. But, My pain wasn't being controlled and I feel hey didn't do EVERYTHING they could have to get me better. If they could have given me more fluids, or a transfusion and less morphine which makes me sick. I feel I could have made a faster recovery. They make you seem like they want your opinion but whenever I asked for something they thought something else was better. I am hoping that through transitioning to adult they will take my opinion and experience seriously when it comes to treatment. Being in the hospital really brought me down, and lately I haven't been feeling myself. I don't know why, but I just can not stay happy. I hope that soon I can get back to being me. Pain free, and happy.

I hope to get my life back from Sickle Cell soon.

Stay Strong,

Morgan

Sickle Cell Dictionary: Avascular Necrosis

Avascular Necrosis is the death of bone tissue due to a lack of blood supply (MayoClinic). The hip, shoulder, knee, hand and foot are the most affected Joints, In Sickle Cell Warriors the hip and shoulder are the most affected joints.  The symptoms of AVN are pain in your joints( on movement, laying down, and weight bearing) and Reduced movement of joint. AVN is often detected by accident during exams or tests for other reasons, because many people with AVN have NO symptoms. It is crucial to detect AVN before it gets to the end stages and get the proper treatment and team to under go surgery. There will be joint destruction within 3 to 5 years if left untreated.

I was diagnosed with AVN in 6th grade, I was 11 turning 12. I started to have constant pain in my left hip, and it was terrible to walk on. I visited my Hematologist and she ordered an X-Ray for what she hoped it wasn't, Avascular Necrosis. The results came in and it was, I was immediately sent to meet with a Orthopedic doctor. He assessed the severity and came up with the best plan of action, to do surgery asap. There are two surgeries that I could have had a hip replacement or Core Decompression. Because of my age he advised us against a hip replacement, it could stunt my growth and may have needed an additional surgery. We decided to go with Core Decompression, during the surgery they inserted a rod and a screw on to my hip and femur and new bone marrow was inserted to attempt to regenerate blood supply to the area.It was my first surgery EVER and it was pretty major. My mom was very upset over it  and the time leading up to the surgery and afterwards was hard on me and my family. I was on crutches for almost a year and used a wheel chair after the surgery. I lived in my family room in a rented hospital bed and had to depend on my family for EVERYTHING! The worst part about it for me at that time was that it was summer and 2 weeks before my birthday. I couldn't participate in activities like i usually could, but i did get to swim later in the summer which actually helped me. This was the first time in my life that I ever felt disabled and sick. It is a long process to finally being relieved from pain, and "regular" again but it is worth it!

AVN is a common complication of Sickle Cell. Many people have to go through what I did, sometimes worse and sometimes better. It is just another part of living with Sickle Cell!

Stay Strong,
Morgan

In tune with Earth.. Sometimes you have to just sit back and enjoy the wonderful things you have. I thank The Lord!

Every month is SCD Awareness Month

Even though Septemebr is over, the fight never stops for us who are fighting against Sickle Cell! Keep reading and supporting me, I am working on big things. 

Enterovirus 68

Guard yourself( AND YOUR CHILDREN ) from this terrible virus. Children are dying and becoming permanently imparted from it. Wash Your hands, don't touch your face, don't keep outside clothes on inside, eat healthy, Stay away from already sick people. Take EVERY EXTRA PRECAUTION you can to not catch this disease or any cold, flu, virus for that matter! They are saying that this virus is only affecting children, but I was once told " there are no never's in medicine " meaning there is always a chance.

This warning is not just for us with sickle cell but ALL of us. 

Take extra care of yourself this season!

Stay Strong,

Morgan