Sickle Cell Dictionary: Hematologist

Hematologist are those people who we visit every 1- 6 months who we either love or hate ,no in between. Well technically they're doctors who specialize in Hematology which is the study, diagnosis, treatment, and prevention of blood diseases. I have been with the same pediatric hematologists at the Children's Hospital of Philadelphia(CHOP) since I was born! I loved some at my speciality center and the main hospital others were complete JERKS and acted like they I didn't even exist. I wont say any names though(but my family and friends DEFINITELY know who they are). As you all know I recently transitioned to adult care and have my second appointment on Friday.

All jokes aside, there are some really great Hematologist who really care about us and our well being. They fill your scripts promptly with now questions, they ask about your personal life, and they don't judge or label you, they are open and understanding. I know now from being involved in support groups that it isn't easy finding a hematologist that does all of the above. I hope that if I EVER have to be admitted to the hospital that I can be treated with respect and like a human being! If not I will definitly leave and find another hospital t treat my right (: 

Hematologist are our partners in our sickle cell journey, it is a blessing to find a GREAT one who is also dedicated to their Sickle Cell Strong!

Stay Strong
Morgan

Bills, Bills, Bills...

So today I sat down budgeting my money and trying to figure out payment plans. I wont put all my of my debts out there but I recently had to get my own heath insurance, its through my school and it has its ups and downs. I don't have to pay a dime for my monthly pills which is a MAJOR plus! I do have to pay a co-pay for any specialty practices (hematologist, unfortunately) But not primary. A major downfall is that it doesn't cover ALL of my hospital stays, recently I started to get bills in from my hospital stay in October. It isn't a crazy amount but it is when you only make a certain amount a month, and have other things to pay for. I/ My Parents never had to pay out of pocket, The insurance i had was GREAT and covered my hospital stays. I guess this is part of growing up but also is whats wrong with our insurance system. No one should have to struggle to pay a bill or be scared to go to the hospital because of that thought. I'm not going off on a tangent right now lol, but just know that I am going to be making big changes for the #sicklecellstrong and chronically ill people of this country!Anyway, I set up a payment plan cause i am not trying to have this debt on my mind. CHOP wins again *side eye*

oh on a side note I tried calling my doctor this morning and called like 5 times to NO ANSWER! Where is the recpetionist?!  Then its my fault if I don't show up at my appointment -_- I guess I'll keep trying...

Stay Strong,
Morgan

Goji Berry

Goji berry also know as wolfberry, and "happy" is a mild, tangy fruit that comes from a shrub that is native to China. They are said to boost immune function, protect the liver, treat eye problems, and promote longevity. I personally heard of goji berries from my boyfriend, one of his co-workers has children with sickle cell disease, they drink a combination of goji berries and alkaline water and haven't had a crisis in years. I am all for trying any herbal supplement that people suggest to help me stay out of pain! I'd be a fool to not try them.

I bought the berries from Whole Foods by a brand called Himalana Organic. Its was $8 for 4 oz. I am going to look around at a local health food store to try to find them for cheaper. I have just started to use them, and to be honest i was not a fan of the taste when I tried them dry and fresh out of the bag. They have a sweet and sour taste, sort of like a cranberry but it was just too dry for me! I searched to find some new ways to use them and still get all the benefits and i found this list below:

1. Raw: First and foremost, eat them raw! A small handful a day will do.
2. Juice: Goji berries are also available in juice form.
3. Tea: Goji berries can be used to brew in a tea. You can add a handful of goji berries to a big glass of hot or cold water (or herb tea) and let sit and hydrate for 5 to 10 minutes. They become plump and juicy. You can drink the tea and eat the hydrated berries which are loaded with antioxidants.
4. Smoothies: Soak a handful of goji berries in water for 10 minutes. Once they are plump and juicy, add them to your favorite smoothie. It won’t make much of a change to the taste or consistency of your smoothie.
5. Trail Mix: You can also add goji berries to your favorite trail mix. Or, make your own by mixing your favorite nuts and dried fruit with some goji berries. Kids like it when you add some chocolate or peanut butter chips to the goji trail mix.
6. Cereal: Just like raisins, add some goji berries to your hot or cold cereals in the morning.
7. Muffins and Scones: Add goji berries to muffins or scones just as you would raisins.
8. Goji Energy Bars: Blend a handful of goji berries together with cup of walnuts, ½ cup almonds, and 5-6 dates in a food processor. Roll the mix into balls or spread in a deep pan to make bars.
9. Add to Soups: This has been a common use of goji berries in Chinese cuisine for thousands of years. 
   

I have been using them by making a Tea that I drink in the morning, they are 10 times better after  hydrating them! Let me know if you all try it out, and any new recipes (and if you find them for cheaper lol)
(list of use credit to downtoearth.org)

Stay Strong,
Morgan

Happy Tuesday

Celebrate each day SC Strong! I am celebrating with this big cup of hot chocolate 

The Power of Teas

Tea is a delicious drink that comes in so many varieties but can also have so many health benefits. We use teas to wake us up, to keep us warm, during social hours, to satisfy a craving, but how about to lose weight, cure an upset stomach, or a headache? I use sleepy time tea by Celestial to go to bed, I prefer to use this method as I can wake up refreshed compared to taking a pill or conventional medicine that makes you drowsy. I am a firm believer in using supplemental/herbal remedies to aid conventional drugs. So try out some teas and learn all of the great things they can do for you!

• Green Tea: Boosts metabolism, contains antioxidants, energy boost, and burns fast.
• Black Tea: Reduces the risk of stroke(we NEED this), improves cardiovascular health, stress relief, better immune system
• White Tea: is unfermented making it the most potent tea in preventing cancer. 
• Oolong Tea: lowers bad cholesterol, aids weight loss

Herbal Teas such as ginger, gingko biloba, ginseng, hibiscus, jasmine, rosehip, mint, rooibos, chamomile, and echinacea are made from herbs, roots, seeds or fruits, and benefits are mostly the same but are backed by limited research. They claim to shed pounds, strengthen immune systems, and help you sleep.

Celestial is my favorite brand of teas, and can be found at most grocery and major retail stores! But, try out some different brands and see what you like, there is so many great flavors to try. Tea makes your soul feel good so brew a cup and let it do its magic. 

Be Strong,

Morgan 

#SCTIP #FeelGoodTip

Call me QUEEN

Call me a queen, beautiful, radiant.. But not *bad*... Men need to start treating woman like more than objects and ladies need to demand the respect that they deserve, we are all created equal, society spoils our brains. 

I aspire to be more than a pretty face, or a trophy, I aspire to create my own name and stand for something I believe in!  I refuse to only live for money, and the praises of "thirsty" and ignorant men. I act like a queen, and kings treat me well. I don't need to be worshipped by people I don't know. I am praised by the ones I love and myself! Intellectual conversation about my goals, and my views make me happier than any likes ever will. I want my young girls in the world to grow up knowing that they control their destiny and they are worth more than what society says they are. 

Stay strong in this cold world to ALL,

Morgan

What's your pill regime?

All of us wih SCD  are always on some type of medication, just to help us get through the day! We laugh in the face of our friends and family who had on a liquid capsule while we throw back a horse pill of ibuprofen. I gross everyone out when I swallow Motrin without water lol, but HEY I need relief darn it!

These are my daily pills, I should be taking a multivitamin too but just haven't bought it yet. I take Motrin( Rite Aid brand works JUST as good and is Cheaper), 4 Capsules of Hydroxyurea, 2 Folic Acid tablets, and birth control( to cut down those terrible cramps). I could be taking a lot more and do when I am in terrible pain, but it's not that much between 9-10 every night I take all of these before I attempt to go to bed. 

What pills do you take on a daily basis? 

Stay strong,

Morgan!

Sickle Cell Dictionary: Acute Chest

Acute Chest Syndrome is a common complication of Sickle Cell and all its branches. It doesn't have one distinct cause and can happen: during/after a crisis, after an infection, a reduction of blood flow to the lungs, or from heavy doses of opiates. Acute Chest Syndrome is fast moving and needs to be caught immediately. While in the hospital us SSS(Sickle Cell Strong) often are attached to the machine to monitor our oxygen level, doctors/nurses check our lungs frequently and at my hospital you are given a chest X-ray no matter what to see if they can detect ACS. Also, I am always given an Incentive Spirometer to ensure i am opening up my lungs and taking deep breathes. They tell you to do it on commercial breaks. I used to hate it when I was young but now I know its absolutely necessary. Fever, Chest Pain, Coughing and Shortness of breath are all signs of ACS.

Personally I always got ACS during a long stay in the hospital when I was heavily medicated, sleeping majority of the day and not taking deep enough breathes. It would hurt so much when I took a breath, a very sharp pain on the sides of my chest. I never really had the cough associated with it, I think because they always caught mine so early on. 

ACS is treated with oxygen 24/7, antibiotics and I was also treated with albuterol treatments. Once I had to get a blood transfusion as well, this is also a common treatment of ACS.

Acute Chest is also VERY prevalent during the colder months, so it is vital for those SSS to seek medical attention at any sign of Acute Chest. If not treated quickly it can be fatal.

Be Strong,
Morgan

Sick cravings

When I am sick i never want to eat anything, as I got older I started to force myself to eat because I know I should. One thing I would always eat are Popsicles, smoothie, and icees basically anything cold and flavored lol. What are y'all's sick cravings? Comment below! (:

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!