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LIVING With SCD(Sickle Cell Disease). - Health (3) - Nairaland

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Re: LIVING With SCD(Sickle Cell Disease). by MissionRestore: 3:04pm On Jul 09, 2019
@tobichuks08 @nelsonmoney @leem4 @ismailaja and other warriors following this thread incognito,
Send me a text message on the number in the signature below to add you on our SCD WhatsApp group.
If you are not mentioned that maybe because I already have your number like Fhunkhy1.
Shalom
Re: LIVING With SCD(Sickle Cell Disease). by toyeoye(m): 6:30pm On Jul 09, 2019
Aa

3 Likes

Re: LIVING With SCD(Sickle Cell Disease). by MissionRestore: 10:44pm On Jul 09, 2019
toyeoye:
Hello all, I just stumbled upon this thread today and I can relate. Mixed feelings but ultimately, one of great interest.

I've seen a lot of similar threads and I've moved on without commenting but this time, I feel the need to say something.

Thanks to the author of this thread for her resolve. May God continue to empower you.

I'm SS. 35yrs, married and I can say I got a good job! I have been blessed. Not immune to crisis but I've learnt that malaria is my worst enemy.

I've had attacks that kept me hospitalised for weeks when I was younger and still fall sick from time to time but much better now.

At a time in my life, I had friends who passed on due to the disorder and I started living a reckless life cos I thought I will drop anyday. Smoking and drinking and living like a "normal" guy and this nonchalant attitude followed me till I was fully grown. I caused my mum especially a lot of pain but inside me I resented my parents for giving birth to me. I mean how can a nurse open her eyes and make such a mistake??

That seems like ages ago and I've made amends for my foolish ways but I think for me, the lesson is that my mind played a trick on my physical being by helping me forget how bad my situation really is. Maybe I'm just one of the "lucky ones" but ultimately it is God all the way.

I've had fracture on my femur and almost had my leg chopped off if not for God's intervention. I've had issues urinating and had a catheter inserted in me until that passed too. Ive had a nurse inject my nerve and cos of that, I walk like a frog like my wife once teased while we we're dating (I lied until things got serious between us and I had to tell her) I still have part of my spine protuding out like a dinosaur and there was a time I had braces from my neck to lower back to correct this. I've also got the hip thing going on and I'm limited to how I can move, it feels like my hips can just shift out of place if I don't watch my step but I'm here, alive and grateful.

I've lied all my life just to be accepted or to avoid pity. It's crazy what we go through. We are strong, mentally.

Please, keep up the good work and if we by chance come together one day to join forces, kindly send me an invite. I will be glad.

Till then, may we all live a fulfilled life, amen.

Stay strong.
It's great having you share your experience. You have accomplished a lot also. Looking forward to having you on the WhatsApp group for a faster turn over of information shared. May God keep and bless you.

2 Likes

Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 1:47am On Jul 10, 2019
toyeoye:
Hello all, I just stumbled upon this thread today and I can relate. Mixed feelings but ultimately, one of great interest.

I've seen a lot of similar threads and I've moved on without commenting but this time, I feel the need to say something.

Thanks to the author of this thread for her resolve. May God continue to empower you.

I'm SS. 35yrs, married and I can say I got a good job! I have been blessed. Not immune to crisis but I've learnt that malaria is my worst enemy.

I've had attacks that kept me hospitalised for weeks when I was younger and still fall sick from time to time but much better now.

At a time in my life, I had friends who passed on due to the disorder and I started living a reckless life cos I thought I will drop anyday. Smoking and drinking and living like a "normal" guy and this nonchalant attitude followed me till I was fully grown. I caused my mum especially a lot of pain but inside me I resented my parents for giving birth to me. I mean how can a nurse open her eyes and make such a mistake??

That seems like ages ago and I've made amends for my foolish ways but I think for me, the lesson is that my mind played a trick on my physical being by helping me forget how bad my situation really is. Maybe I'm just one of the "lucky ones" but ultimately it is God all the way.

I've had fracture on my femur and almost had my leg chopped off if not for God's intervention. I've had issues urinating and had a catheter inserted in me until that passed too. Ive had a nurse inject my nerve and cos of that, I walk like a frog like my wife once teased while we we're dating (I lied until things got serious between us and I had to tell her) I still have part of my spine protuding out like a dinosaur and there was a time I had braces from my neck to lower back to correct this. I've also got the hip thing going on and I'm limited to how I can move, it feels like my hips can just shift out of place if I don't watch my step but I'm here, alive and grateful.

I've lied all my life just to be accepted or to avoid pity. It's crazy what we go through. We are strong, mentally.

Please, keep up the good work and if we by chance come together one day to join forces, kindly send me an invite. I will be glad.

Till then, may we all live a fulfilled life, amen.

Stay strong.
J
toyeoye:
Hello all, I just stumbled upon this thread today and I can relate. Mixed feelings but ultimately, one of great interest.

I've seen a lot of similar threads and I've moved on without commenting but this time, I feel the need to say something.

Thanks to the author of this thread for her resolve. May God continue to empower you.

I'm SS. 35yrs, married and I can say I got a good job! I have been blessed. Not immune to crisis but I've learnt that malaria is my worst enemy.

I've had attacks that kept me hospitalised for weeks when I was younger and still fall sick from time to time but much better now.

At a time in my life, I had friends who passed on due to the disorder and I started living a reckless life cos I thought I will drop anyday. Smoking and drinking and living like a "normal" guy and this nonchalant attitude followed me till I was fully grown. I caused my mum especially a lot of pain but inside me I resented my parents for giving birth to me. I mean how can a nurse open her eyes and make such a mistake??

That seems like ages ago and I've made amends for my foolish ways but I think for me, the lesson is that my mind played a trick on my physical being by helping me forget how bad my situation really is. Maybe I'm just one of the "lucky ones" but ultimately it is God all the way.

I've had fracture on my femur and almost had my leg chopped off if not for God's intervention. I've had issues urinating and had a catheter inserted in me until that passed too. Ive had a nurse inject my nerve and cos of that, I walk like a frog like my wife once teased while we we're dating (I lied until things got serious between us and I had to tell her) I still have part of my spine protuding out like a dinosaur and there was a time I had braces from my neck to lower back to correct this. I've also got the hip thing going on and I'm limited to how I can move, it feels like my hips can just shift out of place if I don't watch my step but I'm here, alive and grateful.

I've lied all my life just to be accepted or to avoid pity. It's crazy what we go through. We are strong, mentally.

Please, keep up the good work and if we by chance come together one day to join forces, kindly send me an invite. I will be glad.

Till then, may we all live a fulfilled life, amen.

Stay strong.

thank you so much for not just passing by.thanks for sharing your truth with the rest of us here ND the fact that you took your time to type it all gives me joy. Don't worry @toyeoye, you're not dying anytime soon like the rest of us here. God got us covered.

As @MissionRestore said earlier, we hope to see you on the WhatsApp movement Where we can all share our stories and get more information.

As you've said earlier , I also pray that May we all live a fulfilled life..



Peace � � �
Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 9:27pm On Jul 10, 2019
Good evening everyone . How are things going?

The WhatsApp support group has been created And I'll be dropping the link � here tonight. This WhatsApp group is for both Warriors and their caregivers alike, and we'll be sharing tips on how to improve the quality of our lifes and tips on how to improve our finances without doing strenuous tasks.

The activities on the WhatsApp group will not hinder the activity on this thread. This thread will continue to remain active.

Here's the link..

https:///Fr9Bk76wKhi1LyKNe8o949

Have a nice night everyone..

Peace � � �

1 Like

Re: LIVING With SCD(Sickle Cell Disease). by MissionRestore: 2:07pm On Jul 11, 2019
MissionRestore:
@tobichuks08 @nelsonmoney @leem4 @ismailaja and other warriors following this thread incognito,
Send me a text message on 0.9.0.2.3.0.7.3.3.6.7 to add you on our SCD WhatsApp group.
If you are not mentioned that maybe because I already have your number like Fhunkhy1.
Shalom
Warm regards to all those sending me messages to be added to the group.
Please when sending your WhatsApp number, kindly add your name and state if you are a warrior or caregiver or friend.
Re: LIVING With SCD(Sickle Cell Disease). by MissionRestore: 10:16pm On Jul 12, 2019
Tracking recent developments with Stem Cell cure of Sickle Cell Disease
https://vector.childrenshospital.org/2012/08/there-is-a-cure-for-sickle-cell-disease-for-some/
Re: LIVING With SCD(Sickle Cell Disease). by MissionRestore: 9:09pm On Jul 13, 2019
Water, water, water and diet is very crucial to achieve a crisis free life. It can't be overemphasized.
See many testimonies validating the above in the thread link below:

https://www.nairaland.com/2390345/19th-june-world-sickle-cell
Re: LIVING With SCD(Sickle Cell Disease). by blacbard(m): 12:10am On Jul 14, 2019
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Re: LIVING With SCD(Sickle Cell Disease). by tabithababy(f): 9:01am On Jul 14, 2019
Whaooo what a great thread

To all warriors, please keep the hope alive

1 Like

Re: LIVING With SCD(Sickle Cell Disease). by MissionRestore: 7:18pm On Jul 16, 2019
MissionRestore:

Warm regards to all those sending me messages to be added to the group.
Please when sending your WhatsApp number, kindly add your name and state if you are a warrior or caregiver or friend.
Please take note of the above guidelines.
WhatsApp group is still open
Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 1:23am On Jul 25, 2019
Good morning my people..
OMG, I really missed you guys a lot, a whole lot. It's been weeks of studying hard and I'm thankful for not breaking down in between. All that's left is for you to trust God with me for a great Result.
How have you all been?
Fellow warriors, shey alaafia ni?
Caregivers, shey we no too disturb u grin?.

Today I just want to remind us on the importance of Hydration for warriors . I dunno if it's only me but I kind of find it difficult to maintain adequate water intake, even when I know It's good for me. Maybe it's coupled with the fact that everyone keeps talking about it (mumc most especially which I know that it's out of love).
God knows I try o. I really do.
At a point I had to download an app that reminds me to take water.. Yeah, it's that bad.

And there are Days I enjoy taking Water than eating , just that days like that are few.

So today I'm encouraging you and me to inculcate the habit of drinking water. Below are some of the reasons we should maintain adequate water intake.

HYDRATION & SCD WARRIORS

An insufficient amount of water in the body (dehydration) is one of the most common causes of a sickle cell crisis. In this situation the blood becomes thicker and sickled shaped red blood cells are more likely to stick together and cause a blockage in the blood circulation. Therefore it is important for an adult to drink at least 3 – 4 Litres of water daily; this is apart from the water contained in the food they eat.

The water can be in the form of plain water, diluted fruit squash, tea and other fluids. Alcoholic drinks should be avoided and if taken it should be consumed in very small quantities because alcohol increases dehydration and can lead to other complications.
By adulthood most people with sickle cell disease are aware of which drinks or food affect their health as an individual. For example, some people experience stomach upsets if they drink fizzy drinks whilst it has no effect on others who have a similar disease.
If for any reason a person with sickle cell disease is not able to drink normally, for example if they are vomiting, losing fluid because they are sweating excessively due to a fever or they have diarrhoea it is important that they seek medical attention urgently in order to find out the cause of the vomiting, fever or diarrhoea and treat any infection promptly.
Adequate � hydration helps To lessen occurrence of constipation .
Personally I noticed hydration help reduce the yellow discoloration of the sclera (jaundice) and the coke colored urine.
It helps the kidney to carry out its functions adequately.
It also helps To reduce Pain during vaso-occlusive crisis by reducing the thickness And stickiness of blood that has occluded the arteries ,thereby allowing the flow of blood.
. . .. . . . .. . ... . .. . . . . . . . . . . . . . . . . . . . . . . .. . . . . . .
Adequate hydration plus use of prescribed medications plus knowing what triggers your crisis Plus adequate nutrition(Balanced diet) will help us maintain a crisis-free period .
I'm encouraging us to always go everywhere with a bottle of Water in hand. Don't ever assume that water will be available there.

Stay Hydrated and enjoy the rest of the week.

Peace ✌ ✌ ✌

2 Likes

Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 12:11am On Jul 30, 2019
I know I can put down my ramblings and thoughts here without being judged. sad angry sad

The Hustle is real.

I really do not know why I'm writing this right now at this odd hour but whAT happened to me tonight made me realize that the hustle is more realistic or realest (if that English is correct) for SCD warriors. I haven't really been exposed to catering for my needs since I was young but now I'm in the university with #200 to manage before another alert comes in. Mind you I'm not an extravagant spender, I'm someone who's prudent in spending but the past few days has been hell..
I know what you're thinking, ... Why haven't my parents sent in an alert ?right ? Well, they're trying,, and besides I'm not the only daughter in school.
Truth is I Can't undergo any strenuous activities(I for don dey do labour for the building undergoing construction near my hostel) , my hip is clearly an obstacle And I'm not lazy either with regards to my craft (Beadmaking),,just that clients aren't even up to a handful.

Now I'm scared.
Scared for other scd patients with more complex complications that disallow mobilitY (fibromyalgia,myofibrosis,avascular necrosis ,stroke, paralysparalysis, etc)
How do you guys cope with making ends meet? Coz I understand not everyone of us has a caregiver.
Plus caregivers also get tired too.
I take this moment to pray for divine healing for each and everyone of all SCD patients.

By tomorrow morning I'll probably take thiS post down after I've sobered up but for the few people that will see this, I hope that you learn to be nice to people around you, you can never know what they're going through, wearing good clothes mean nothing when one is suffering.


BE NICE..

AN ACT OF KINDNESS WOULDN'T MAKE YOU LESS HUMAN.

I'm not making this post to get pity from you guys Or anything, just letting you guys know that
WE'RE NOT LAZY...
I KNOW scd patients who juggle 2 to 3 jobs just to survive, we do what we can.
.

.
.
. Never call us weak or lazy.
. Help whenever you can.
. If you can't help financially, do so emotionally or psychologically.

Have a great night. �

God bless you.
Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 2:54pm On Aug 01, 2019
ACUTE CHEST SYNDROME

Acute chest syndrome is a complication of sickle cell disease.Acute chest syndrome is a term used to cover conditions characterized by chest pain, cough, fever, hypoxia (low oxygen level) and lung infiltrates. Acute chest syndrome may be the result of sickling in the small blood vessels in the lungs causing a pulmonary infarction/emboli or viral or bacterial pneumonia.
It may develop as a single event, or during a painful vaso-occlusive crisis.

SYMPTOMS

Chest pain when breathing is the most common presenting complaint in adults.
Fever, cough, tachypnea (abnormally rapid breathing), hypoxemia (an unusually low concentration of oxygen in the blood), or abdominal pain are common presentations for infants and children.

It is always best to rule out infection in these cases and obtain appropriate blood cultures and serologic studies. There may or may not be radiographic evidence (X-ray) of pulmonary infiltrates at the initial time of symptoms.

TREATMENT
-Broad spectrum antibiotics to cover common infections such as Streptococcus pneumoniae and mycoplasma,
-Analgesic for pain control, and
-blood transfusion. Acute chest syndrome is an indication for exchange transfusion.
-Bronchodilators may be useful .

.................................................................................
I haven't really experienced acute chest syndrome in my adults years so far but I can remember having it in my childhood years. Though I wasn't diagnosed because my folks couldn't afford hospital bills but the nature of the pain in my chest and the difficulty in breathing accompanied with it makes me think that it must have been ACS.

I'm using this medium to encourage us to know our genotype before putting a ring on someone's finger. No one in his or her right senses should subject their child to a lifetime of sickness all in the name of love.

#ACS
#SCD
#WARRIOR
#KNOWYOURGENOTYPE

Enjoy the rest of your day � grin grin

Peace✌️✌️✌️

1 Like

Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 11:37am On Aug 12, 2019
Hello everyone. How are we?
To my brothers and sisters in Islam , ẹkú ọdún iléyá yìí. Èmí aa ṣe pupo ninu alaafia.

So I came across this interview of Greg.
Greg Emuze is the co-founder of Crimsonbow sickle cell initiative and he's a warrior in which I look up to.

Greg has a few words to say to fellow warriors and caregivers.

Please click on the link below

https://theworldnews.net/ng-news/i-couldn-t-go-to-school-of-my-choice-due-to-sickle-cell-disorder-grey-emuze


Enjoy your holiday.. grin grin

1 Like

Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 4:23am On Sep 07, 2019
Good morning everyone.
I'm really sorry for being MIA. I sincerely apologise.

*20 Inspiring Quotes to Reignite the Sickle Cell WARRIOR Inside of You.*

Whether you personally live with sickle-cell disease or you're a caregiver to someone who does, there's no doubt that it takes a lot of perseverance for you to push through the tough times.

To celebrate your warrior status, we're sharing some of our favorite quotes on overcoming, building courage, and having overall tenacity.

1. "Being a survivor doesn't mean being strong - it's telling people when you need a meal or a ride, company, whatever. It's paying attention to heart wisdom, feelings, not living a role, but having a unique, authentic life, having something to contribute, finding time to love and laugh. All these things are qualities of survivors." --Bernie Siegel

2. "You recognize a survivor when you see one. You recognize a fighter when you see one." --Elizabeth Edwards

3. "Life isn't perfect. When you get a knock, you have to get up, dust yourself down and get on with it." --Patsy Kensit

4. "What makes people resilient is the ability to find humour and irony in situations that would otherwise overpower you."--Amy Tan

5. "One who gains strength by overcoming obstacles possesses the only strength which can overcome adversity." --Albert Schweitzer

6. "Just as we develop our physical muscles through overcoming opposition - such as lifting weights - we develop our character muscles by overcoming challenges and adversity." --Stephen Covey

7. "Acceptance of what has happened is the first step to overcoming the consequences of any misfortune." --William James

8. "When faced with a challenge, happy families, like happy people, just add a new chapter to their life story that shows them overcoming the hardship."--Bruce Feiler

9. "Although the world is full of suffering, it is also full of the overcoming of it." --Helen Keller

10. “If you are faced with a mountain, you have several options. You can climb it and cross to the other side. You can go around it. You can dig under it. You can fly over it. You can blow it up. You can ignore it and pretend it’s not there. You can turn around and go back the way you came. Or you can stay on the mountain and make it your home.” --Vera Nazarian

11. “The future will present insurmountable problems- only when we consider them insurmountable." --Thomas S. Monson

12. “Nobody looks good in their darkest hour. But it's those hours that make us what we are. We stand strong, or we cower. We emerge victorious, tempered by our trials, or fractured by a permanent damning fault line.” --Karen Marie Moning

13. “The greater the obstacle, the more glory in overcoming it.” --Molière

14. “Those who don't know how to suffer are the worst off. There are times when the only correct thing we can do is to bear out troubles until a better day.” --Deng Ming-Dao

15. “I am more than my scars.” --Andrew Davidson

16. “If you expect life to be easy, challenges will seem difficult. If you accept that challenges may occur, life will be easier.” --Rob Liano

17. “There is no chance, no fate, no destiny that can circumvent, or hinder, or control the firm resolve of a determined soul.” --Hyrum Smith

18. “Thriving. That's fighting... Surviving is barely getting by.” --Jillian Michaels

19. “Confidence, courage and determined spirit are vital for surviving hard times.” --Lailah Gifty Akita

20. “Armed with my positive attitude and inherent stubborn nature, I keep my mind focused and my life moving forward. I stop to rest, pout and even cry sometimes, but always, I get back up. Life is giving me this challenge and I will plow through it, out of breath with my heart racing if I have to.

.........................................................
So September is known as sickle cell awareness month and I want us to share our stories here. Let's create awareness in our own little way by telling people what SCD really entails, you'll be surprised about the rubbish people think they know about it.
The floor is officially opened, let's hear some of your experiences.

.............
To fellow warriors out there, make una no enter rain o. The rain here in Òsogbo Is something else these days. I didn't go to class yesterday coz of the rain , it started 8am and ended 1pm. The class was important but I couldn't risk my health for it.
And please o ,don't let us be doing big boy and girl and not wear cardigan when necessary...we will be doing ourselves by doing that.

I wish us all a crisis free month.

Peace ✌️✌️✌️✌️

1 Like

Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 8:39pm On Sep 19, 2019
Good evening beautiful people.
I'm sorry for being absent. Exams won't let me be for the next few months ( you're darling girl will be a registered nurse in a little while,, y'all should pray for me) and I'm getting drained already because School exams starts on Monday and my first professional exam in November.

September is known to be the "sickle cell awareness month" and it has been a great one so far as many organisations and individuals are making it top priority to increase the awareness.( I hope you do so too)

It's the 19th day of September and this is what I've got for you. A fellow warrior wrote it.


Day #19 Sickle Cell Awareness:

* We will probably live half our lives in the hospital ��
* Be on drugs routine daily � to avoid been in and out of the hospital
* Drink water like fish �
* Try so hard to avoid drug dependency (addiction/abuse)
* Get swollen butt from frequent injection �
* Pain from canulars and getting pierced a thousand and one times just to get a vein for fluids and iv � (is like the thing is a set up, once there is a crisis boom vein yaf go on vacation) ☺
* The tears/shouts/screams from pain which gets to a 100% at nights.
* Been called customer dada (better customer) in your hospital.
* The emotional (Addiction, dependency, Mentally health e.g depression, anxiety disorder etc) Physical (AVN, DVT, blood transfusion, ACS, leg ulcer, organ failure etc) Social (Stigmatization, perceived as weak, pity) Financial (Managing SCD breaks the bank especially when there is no insurance) torture.
* Restrictions (swimming, not going to the theater because of AC, not getting married to just anyone unless they are AA, allowed to injest anything with iron in them "this differs"wink...
* How can I forget how family, friends and significant others who has deprived themselves of so many things just to be able to take care of us

* Chai, some of us have suffered in this love matter while some of us had it easy (Our AA brothers and sisters na we dey rush them �), so much dos and don't and the list is endless living with Sickle Cell Anemia.

The reason for this write is not to focus on this negativity we have to go through on a daily basis to stay alive but to remind us that a lot of us keep our focus on our loses (pain, death) and forget the things we should be grateful for in between all the hurdles. A lot of us were told we won't get to the age we are today but we still got through and are standing even stronger (Only Grace, no be by how much you take care of yourself o). Some of us has gained their wings which saddened a lot of us (as to be expected) but if we look deeper "Their deaths should be a trigger to create awareness everyday of our lives to as much people we can get across to.

It's Sickle cell awareness month, how many of you have talked sickle cell, genotype testing etc to someone... I know it can be difficult for some of us (talking about having sickle cell might make the world perceive us as weak) but sickle cell should not make you weak, we have doctors, nurses, actors, engineers, flight attendants, writers, pharmacist, lab attendants, business gurus etc to mention but few.

P.s: You can achieve anything you set your mind to and stop comparing yourself to another warrior (same diseases but we are affected differently). I challenge you tell someone today about genotype testing, no one deserves to be in this much pain

We are *WARRIORS* , We are *SURVIVORS*

*I* am *ME* and *YOU* are *YOU* before our cells.


Signed: Doris Peter ☺
Re: LIVING With SCD(Sickle Cell Disease). by Silenca: 7:29am On Sep 20, 2019
Hello friends!!
I am Ann by name and a Medical Practitioner. You know God has giving everyone something special irrespective of conditions and challenges but the enemy might come to steal it away from us through one thing or the other but only your determination and focus can help you achieve it.
So never give up in life and as well keep living for God, your family and yourself.

But meanwhile, if you think you have had enough of all this SCD, Leukaemia, Anaemia, etc and want to really get yourself healthy enough to live up to the expectation of which you were created, then I think you should just let me know through this medium.
WhatsApp: 07063216528

This is not just about your health situation but I want to be there as a friend whenever you feel alone or help.
So let's work together and achieve a better you.

1 Like

Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 4:11pm On Nov 28, 2019
Hello friends.

I know I deserve all the tongue lashing I'm getting for keeping you waiting for a long time.
Ema binu simi ������. Somekept refreshing the page to see if there's a new post..
I also know that some were hoping and praying for me not to fall sick,,, your prayers kept me going .. while some took their time to call and chat me up,, kisses..

I'm so happy to have you guys,, you're awesome. grin

This is just to let you know that I'm back and better, and that y'all should look forward to new and exciting posts.

Peace ✌️✌️✌️
Re: LIVING With SCD(Sickle Cell Disease). by Nobody: 4:47pm On Nov 28, 2019
I saw a movie titled 5 feet apart on cystic fibrosis (the white man version of SCD) few weeks ago it shook my perspective about life, I got the same feeling going through this thread. I love the optimism here, keep it alive. Hopefully someday the government will pay special attention to those living with SCD, please drink a lot of water and stay healthy. Enjoy.

1 Like

Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 3:12pm On Nov 30, 2019
Good afternoon sad sad.


I've had a bad day so far. It started off with me purging till day break and then I slipped and fell when I eventually had the courage to get outta bed. I got bruises on my toes and they're swollen and so painful embarassed. And the most painful aftermath of the fall is that my phone screen cracked up real bad and it's breaking my heart sad..
Don't laugh at me o, if only you know the history behind the existence of the phone..and No,,, it's not an iPhone..

So I'm lying down here feeling very weak and bothered about how I'll pack my luggage.
Yeah it's another clinical posting and it's going to be at Ìbàdàn.. undecided for 6 weeks o.

Lemme goan summon courage to start packing up. TTYL.

Peace ✌️✌️✌️

2 Likes

Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 3:13pm On Nov 30, 2019
MessangerOfTrut:
I saw a movie titled 5 feet apart on cystic fibrosis (the white man version of SCD) few weeks ago it shook my perspective about life, I got the same feeling going through this thread. I love the optimism here, keep it alive. Hopefully someday the government will pay special attention to those living with SCD, please drink a lot of water and stay healthy. Enjoy.

Hello . Thanks for visiting the page and I've made a mental note to check out that movie ..
We hope to see more of you here
Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 8:10pm On Dec 07, 2019
Okay o.
So I'm in IB at the moment for the clinical posting I told you about in Adeoyo. It would be one week that I got here tomorrow and I'm grateful for life and for a painless week.
There have been challenges though. The first one being the stress I go through by using the staircase multiple times a day even though I try as much as possible to limit my movements. The second being the stress I go through carrying buckets of water up the stairs daily for use.and Yes I carry Small buckets but I still find the activity stressful. The third being the fact that I stay alongside some colleagues from school(2 of them) And I so much love my privacy so it's kind of an issue for me plus other underlying issues.
Those are the pressing challenges I'm having at the moment...
Ps :Azeez if you can see this post please chat me up coz I'll love to meet you while I'm here in ìbàdàn.
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.
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And just in case you don't know guys, your humble girl right here Issa Bead maker and you can bet I'm so good at it( wink I'm not prouding o, na confam). You pipu should help me sell my market while am here .. call @abiola_onileke on 08143505458 for your exquisite beads.
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.
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Thanks for reading.
Peace ✌️✌️✌️♡

3 Likes

Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 8:30am On Dec 18, 2019
I am not a warrior, but I know nobody likes to be ignored no matter how little.

How to react or control how you feel is solely dependent on who has ignored you. How you would handle an ignoring spouse is different from how you'll handle a friend, sister, colleague, etc

Then the level of the "ignoring" did they really ignore you? Or you are the one feeling you were ignored? It needs to be defined clearly. Why? Some people have character issues without knowing. They feel everyone owe them greetings or respect when life is naturally not like that. Some other person might not just be in the mood you expect or assume them to be in as life deals with everyone accordingly. #nobody is completely free from life's blows... There's always a vacuum(but) in everyones life that's why everyone needs Jesus(HolySpirit)...He helps you to cope with peoples excesses.

Now I think everyone needs to know this...
NOBODY IS IMPORTANT TILL YOU MAKE THEM IMPORTANT.

Importance is like a neck chain you have, only you have the power to choose who you wear it on, and when you feel they no longer deserve it, you politely take it off their neck and keep it.

HOW TO HANDLE BEING IGNORED

1. Don't internalize it when it happens... Don't allow yourself think that they treat you that way because you are a warrior ❌

2. Talk about it with the person if you can, if not, then let it go, don't beat yourself over it.

3. Carriage... Carry yourself in such a way that is hard for someone to ignore you. Am not implying you become proud o please don't get me wrong. Just try to talk when you are suppose to, don't jump into peoples lives uninvited, don't jump on a discussion you are not called into or you don't fit into..

3. Don't invade peoples privacy... Many people don't like it. Either life, emotions, homes, social media etc

4. Be sensitive... Study people you have around you. Everybody have likes and dislikes, some people would naturally ignore people who talk too much, or play too much, etc

5. Don't treat yourself less... You deserve to be treated right, so is everyone. Treat people well too. Dress well even with the little you have, smell well, etc

6. Be presentable... That you are a warrior doesn't mean you have to look a certain way. Don't feel the whole world should pity you cos you are a warrior, no it doesn't work that way.

7. Push, aspire, dream and work towards achieving your dreams and goals... Nobody ignores success.. Work on yourself till you become what you desire. I know its not easy but you must not stop pushing.

8. � always celebrate yourself... Nobody will love you if you don't show them how... Always pause and give yourself a pat in the back and tell yourself you are the best there is on earth. Many people don't know how to love up on themselves self, so how do you expect someone else to try?

Let me stop here � I was just move to say a little and now I have said alot� don't mind me jare. But hope what I said made sense abit? I didn't really know the situation on ground so I just randomly wrote on stuffs I think can help. I hope it helps someone sha.

Merry Christmas everyone. May this season bring you so much Joy that no ignoring can quench �

Message from @ Sarcoella fabrics

1 Like

Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 2:39pm On Jan 01
So I spent the last few minutes of 2019 and the early hours of 2020 learning that Man proposes and God disposes.
@10:30pm yesterday I stood up to prepare for d crossover service and then it hit me .
Pains.
Crisis .
Oh God Not today I begged.
Within few minutes the pains spread from my knees , to my back, to my chest.. .
Without saying anything to anybody,I dragged myself n picked up the necessary drugs, swallowed them in one gulp and waited for it to begins taking its therapeutic effects .
Within me I was still hoping that by 11pm I'll be fine and I'll still be able to go to church.
But no, pain increased(pain scale of cool,, but still assured everyone around that they could go ahead to church and that I'll meet them there soonest..

Then light came (phcn) , switched on TV, managed to smile through an episode of Henry Danger showing on Nickelodeon.

Still in pains ( pain scale of 5 now),I checked the time n it was 11:45pm , that's how I sha Did service with Pastor Adeboye by switching to �️ Dove television.

So in all my years of pain n crisis, it has never happened that I crossed over into the new year in pain, neither has it ever happened that I crossed over into the new year without my folks..

This isn't a Big deal right? I know but you know when you have everything planned out and something unexpected happens. It has made realize I can do nothing and to put All on God this new year.. I'm much better now and I'm grateful.

HAPPY New year Fam ��.
Cheers to a crisis free year ��
#Crisis
#SCD
#2020
#January1st

2 Likes

Re: LIVING With SCD(Sickle Cell Disease). by fairygeh(f): 8:57am On Jan 03
Fhunkhy1:
So I spent the last few minutes of 2019 and the early hours of 2020 learning that Man proposes and God disposes.
@10:30pm yesterday I stood up to prepare for d crossover service and then it hit me .
Pains.
Crisis .
Oh God Not today I begged.
Within few minutes the pains spread from my knees , to my back, to my chest.. .
Without saying anything to anybody,I dragged myself n picked up the necessary drugs, swallowed them in one gulp and waited for it to begins taking its therapeutic effects .
Within me I was still hoping that by 11pm I'll be fine and I'll still be able to go to church.
But no, pain increased(pain scale of cool,, but still assured everyone around that they could go ahead to church and that I'll meet them there soonest..

Then light came (phcn) , switched on TV, managed to smile through an episode of Henry Danger showing on Nickelodeon.

Still in pains ( pain scale of 5 now),I checked the time n it was 11:45pm , that's how I sha Did service with Pastor Adeboye by switching to �️ Dove television.

So in all my years of pain n crisis, it has never happened that I crossed over into the new year in pain, neither has it ever happened that I crossed over into the new year without my folks..

This isn't a Big deal right? I know but you know when you have everything planned out and something unexpected happens. It has made realize I can do nothing and to put All on God this new year.. I'm much better now and I'm grateful.

HAPPY New year Fam ��.
Cheers to a crisis free year ��
#Crisis
#SCD
#2020
#January1st
The A lmighty God will have mercy on you.you shall have a pain free year by God's Grace

1 Like

Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 11:25am On Jan 12
fairygeh:

The A lmighty God will have mercy on you.you shall have a pain free year by God's Grace

Amen o.. I pray the same prayer for all warriors all over the world.
Happy Sunday Fam.
Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 12:16am On Jan 16
Late Night Post.
.
.
I'm back in Osogbo after the successful completion of the 6weeks midwifery posting in AMTH , ìbàdàn. The posting was an eye opener with regards to motherhood and the real life challenges that many families go through. And with what I've seen mothers go through in the labor room ,I don't think I have the heart and courage to birth a child natural (per vagina) so don't be surprised when you hear that I'll be opting for a ceasarian section.
I'm not saying this to scare y'all but a battle go on in that room. The battle a woman fights in ensuring she brings forth a life child with no abnormalities...

With regards to me ,I've had crisis for 3 consecutive nights since I got back which I find very unusual but I pass the blame on the stress of travelling back with all my bags and baggages..

Classes have also began and yeah, Final year feels good and I'm catching the vibes already..

Then a classmate pushed me out of a group pic simply because she doesn't want to snap with someone that doesn't have bumbum.. imagine,, how's that supposed to be my fault?as if I created myself... Yèyé somebori.

G2g and catch the 1am sleep train.
Enjoy the rest of your week guys..

Peace ✌️✌️✌️

1 Like

Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 2:52pm On Jan 19
Happy Sunday Fam.

This year marks the beginning of my final year in school and I'm pretty excited about it. I wouldn't bore you yet with the details of my remaining and upcoming professional exams this year ..
Wait o , did I remember to tell you that your Baby girl is now a Registered Nurse,, I think I did grin grin..

The 31st of this beautiful month will also mark my 24th year on this planet.. Guys I won't lie to y'all, I feel one kain about d new age,,I feel like 24 is a big number and should I say I don't wanna grow old . .. I'm just scared about the whole thing jàre .
Please say something to allay my fears. What was 24 like for you? Where did you stand then and where do you stand now? Please share them with me.

I'm using this medium to promise you guys that I'm going to be more consistent with my post (at least 1post a week) this year. I dunno how I'm gonna do it but I trust God to help me go about it.

Wishing you a pleasant evening.

Peace ✌️✌️✌️✌️

(Don't forget to comment about the Age 24 thing ��)

2 Likes

Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 1:49am On Jan 28
Tonight let's talk about Leg ulcer another ugly complication of SCD.
.................................................................
LEG ULCERS
Leg ulcers in patients with SCD are often described as punched out wounds with raised edges, necrotic debris within the wound, and sloughing surrounding the ulcerated area. They commonly have a yellowish biofilm and a significant amount of exudate.they are usually situated slightly above the ankle joint.
CAUSES
The exact cause of leg ulcers in SCD patients is unknown, and the causative mechanism is thought to be multifactorial.
Etiologic factors include the sickling of red blood cells in blood vessels, causing vaso-occlusion and impairing oxygen delivery to tissues; as well as the binding of hemolysis-freed hemoglobin to nitric oxide, deactivating it and subsequently resulting in vasoconstriction.

The two major challenges in leg ulcer management in patients with SCD are the prolonged course to recovery and the high recurrence rate of healed or grafted ulcers. Both these challenges are due to the fact that the therapies used, whether local wound care or surgical interventions, do not modify the pathophysiologic factors that have led to the occurrence of the leg ulcers, and the same factors are therefore at play causing the healed or grafted skin to ulcerate.
Another significant challenge to proper care of leg ulcer in patients with SCD is the significant pain associated with these lesions. The constant pain associated with these lesions, as well as the intolerability of dressing changes, makes wound care difficult and decreases patient compliance with wound care regimens.

MANAGEMENT

Therapies currently used for the management of leg ulcers in patients with SCD revolve around
-overall disease control: stay hydrated, eat nutritious meals,use treated mosquito net, taking routine drugs as prescribed and trying not to get infected..
-wound care and dressings:Patients are encouraged to keep ulcers clean, with proper cleansing of the wounds using soap and water, or normal saline solution.
Some topical Antibacterials, anti-inflammatory and some antibiotics can be prescribed..
Compression socks are also used
-debridement:serves to cleanse the wound of its necrotic, senescent cells, inflammatory, and bacterial loads.
-surgical management with skin grafts or flaps.
-Blood transfusions have also been traditionally used to alleviate sickle cell symptoms, including chronic nonhealing leg wounds, based on the premise that higher hemoglobin levels and subsequent better oxygenation should lead to better healing.
-Zinc is believed to have a role in wound healing.

Note:sickle cell leg ulcers are severe chronic and recurrent . No permanent cure has been found.
Re: LIVING With SCD(Sickle Cell Disease). by warisogeophysics(f): 4:29am On Jan 28
Sickle cell anaemia can be cured with plant stem cell therapy. Without bone marrow transplant. Pls call or send me a WhatsApp message on 08083830162. Get your Healing today.
Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 1:25am On Jan 31
It's my Cake day today guys ������� And I'm using this medium to say thank you for reading and following.❤️
And because of your consistency and love for the thread I decided to put up a picture soon imploring y'all to rush to my profile to view the face behind the thread and please press the follow button.


Say a word of prayer for me when you see this post.
Thank you very MUCH

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