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Stats: 2,550,076 members, 5,875,885 topics. Date: Thursday, 24 September 2020 at 01:18 PM
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 1:35am On Feb 13|
I really don't have much to say these days,some say I've been withdrawn,I dunno, maybe it's true. The past 12 days haven't been what I expected, mood swings all day, one crises, tests,exams, unexpected expenses plus my lacrimal glands have been very active.
I know I'll be fine.
Just want you all to stay strong while I get back on track.
Please send hugs my way.
God bless you
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 6:42pm On Feb 17|
One of the toughest questions I've been asked which I have no honest answer to:
"How frequent do you have crisis?"
Honestly, you want to know? Okay, how do I explain this? Which ones should I count as crisis bayi?� Do I count all what is regarded as crisis (VOC, hemolytic, sequestration, aplastic)? How do one even know those ones?
Or do I count the one that comes with pain (VOC) which everyone regard to as crisis? And how do I even count all those ones? Do I count for every time I feel pain and I had to take a break, or the ones that requires me popping some doses of analgesics in my room? Or is it those that take me to the pharmacy that should be regarded as crisis? Abi I should just count the ones that take me to the hospital? Or the ones that saw me being rehydrated with drips as an outpatient? Okay, I guess I will just count the ones that got me admitted in the hospital and lasted days?�
Honestly, this is one technical question I still find difficult to answer because I lose count of the ones technically refer as VOC and redefine my own crisis per time. It's one of the questions in my research questionnaire that I knew I may not get an honest answer to. Personally I won't even give an honest answer to it, because I don't know. I like to regard just the crisis that got me admitted, and sometimes the ones that got me injected at the hospital as crisis. I lose count of every other ones, as they don't really matter?
Medical practitioners, when you ask the question, how frequent is your crisis, or when was your last crisis, what answer do you expect? Which ones (crisis) are you referring to?
Warriors, how do you respond to the question(s)? Which episodes do you count as crisis?☹️
Stay healthy and have a great week.
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 12:33am On Mar 14|
So I'm here listening to 9lives by Asa and I can't help but think maybe I've got more than one life. I've had numerous near death experiences and baby girl is still here, unshakable and strong and even crisis free .
I'm Grateful Lord.
Community clinical posting still ongoing (2 weeks left) and it's been great. I'm still learning and I'm getting better at being a Nurse.
Below is one of d pictures taken at one of d primary health care centers I've been in d past 4 weeks..
How are you doing today?
Have a great weekend...
|Re: LIVING With SCD(Sickle Cell Disease). by speed99: 12:45am On Mar 14|
Beautiful You. You are strong. At times when answers don't come readily, turn to God.
Respect. positive energy.
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 12:31pm On Mar 17|
speed99:God keeps me going.. and I pray never to loose my positive vibes. No room for depression.
Thanks for responding boss ��
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 8:34pm On Apr 07|
*“I do not consider isolation having to stay at home with who I love.*
*Isolation is what the seriously ill are experiencing.*
Stop saying that you are bored, upset that you can't leave the house; while everyone in the hospital wants to go home.
So, thank God if you have to stay at home, because despite everything, with money or without money,
with a job or without a job, you are in the best place you could be, at home, surrounded by who loves you!
*Perhaps it is time to transform your house into a wonderful place to stay, a place of peace and not of war, of embrace and not of distance.*
Anyway, look with different eyes at the situation you are experiencing !!
*Make your house a party:* Listen to music, sing, dance ...
*Make your house a temple:* Pray, pray, meditate, ask, thank, praise, plead ...
*Make your home a school:* Read, write, draw, paint, study, learn, teach ...
*Make your house a store:* Clean, order, organize, decorate, label, move, sell, donate ...
*Make your house a restaurant:* cook, eat, try, create recipes, grow spices, plant a garden ...
make your house, your family, a place of love.".
Saw d above post somewhere and thought it would be beneficial to us all .
I've been watching too much TV;mostly cartoons coz my sisters kid won't let us watch anything other than Disney Junior so now I know PJ masks,TOTS, Elena of Avalon, Bluey, Vampirina to mention a few.
I've also been listening to songs. Taking my time to download Brymo's latest album and a few selected songs.
And then coming to movies, I've been watching a lot of .but then I came across one today which people have been saying it's making them cry up-and-down that is, very emotional (title- miracle in cell No.7).if u haven't seen it please do. It's highly recommended..
As per reading, I haven't even brought out d books I brought home from my bag..
So tomorrow I'll start reading the book my book club picked for April. The title is "The Alchemist"
I'm also doing mummy duties for my sister's baby whenever she goes to work( she's a nurse too and I'm at her place). .
I intend to add some praying time to my daily schedule.
I also want to search for some online courses to do .
May God help me.
What are you doing during this lockdown?
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 12:29pm On Apr 26|
Recommedations from *Psychologists*.
*1*. Isolate yourself from news about the virus. (Everything we need to know, we already know).
*2*. Don't look out for death toll. It's not a cricket or football match to know the latest score. Avoid that.
*3*. Don't look for additional information on the Internet, it would weaken your mental state.
*4*.Avoid sending fatalistic messages. Some people don't have the same mental strength as you have.
*5*. If possible, preoccupy yourself with something productive. Spend your time creatively and fruitfully learning something new. Take some time for meditation and prayer.
*6*. Your positive mood will help you to protect your immune system, the negative thoughts only weaken your immune system.
*7* . Maintain friendships that inspire and uplift you. Social distancing is not social isolation.
*8* . Look after your physical health - exercise, eat healthy meals
*9* . Stay happy, play music, dance, call friends, do quizzes, laugh more, limit daytime nap to 30 mins, manage your emotions in these times. Limit your consumption of news about Covid. Watch comedies instead.
*10* ..Most importantly, firmly believe that we will be safe that we will overcome this. Only a few wouldn't and that is the truth.. Stay very positive.
*Stay positive...Stay safe.*
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 12:18am On May 23|
May we all find peace.
|Re: LIVING With SCD(Sickle Cell Disease). by watchindelta(m): 6:26am On May 23|
Fhunkhy1:what the difference between SCD vs SCT? I don test last year the doctor told me I have a SCT but I dnt sick!
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 9:28am On May 28|
watchindelta:Please whats do you mean by SCT? Stem cell transplant? Or what?
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 9:46am On May 28|
Q:when would you say that you had license to make decisions yourself??
A;I gained my independence @17,, when I went to LAUTECH to start predegree. Prior to this, my parents were really over protective. Truth is my mum even went with me sef. She helped me buy d necessary stuffs,followed me for registration ,, she stayed for almost a week before she left for Lagos. Decisions I made ranged from what to eat to what to wear to other important matters. I have learned and unlearned things,I'm grateful for d journey thusfar.
Q:Did you have problems with ur self esteem?A:Concerning self esteem, I wouldn't say I had low self-esteem,, I just felt inadequate, felt below my peers in material things (this didn't bother me much though) plus I was limping badly then and I looked like a 12 year old.. so I pretty much kept to my self but as a sanguine my true self came out sooner than I expected in d hostel n I made friends.
Q: what advice would u give to parents wo have warriors as kids?
A: Whether u let us discover ourselves or not, crises will occur noni.so why not allow us do the things we want, allow us play,do sporting activities etc. One advice u should give in these things is that they shouldn't push themselves too hard.. Don't depriveus of our childhood.
Teach them to be independent, explain the use of each drug they take ad give them a sense of responsibility. Give them tasks and let the take responsibility for it. Correct them when they make mistakes. Be a good Parent.
If u have any questions for me , please ask.
Enjoy ur day.
|Re: LIVING With SCD(Sickle Cell Disease). by watchindelta(m): 7:20pm On May 28|
Fhunkhy1:sickle cell trait
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 12:36am On May 30|
watchindelta:Having the trait doesn't mean you have the disease.
What Is Sickle Cell Trait?
Sickle cell trait (SCT) is not a disease, but having it means that a person has
inherited the sickle cell gene from one of his or her parents. People with SCT
usually do not have any of the symptoms of sickle cell disease (SCD) and live a
0What Is Sickle Cell Disease?
SCD is a genetic condition that is present at birth. In SCD, the red blood cells
become hard and sticky and look like a C-shaped farm tool called a “sickle.” The
sickle cells die early, which causes a constant shortage of red blood cells. Also,
when they travel through small blood vessels, they get stuck and clog the blood
flow. This can cause pain and other serious problems. It is inherited when a child
receives two sickle cell genes—one from each parent.
|Re: LIVING With SCD(Sickle Cell Disease). by watchindelta(m): 6:37am On May 30|
Fhunkhy1:oh I see know! No wonder I dnt get sick, because I told my friend the man is talking rubbish before oh! Thanks
|Re: LIVING With SCD(Sickle Cell Disease). by okpurukata(f): 1:04pm On May 30|
Dear Fhunky, you are simply amazing. I read the thread to the end. May God continue to give you the strength to fight this fight. You are indeed strong and will continue to be triumph. God bless you dear.
|Re: LIVING With SCD(Sickle Cell Disease). by okpurukata(f): 1:06pm On May 30|
Am a sickle cell, am 22yearz old. a dropout. at age of 10 I had priapsm. which I had erection for almost 20days later got burst at day 20. from then I.can't. av erection. I came from a poor family, a mother who care and a father who don't. we are 5 and am the only sickler. av never been to hospital b4. when I get sick or had crisis, no matter how hard it is, I will have to stay on my bed and endure. am sad. but nothing can be done. av accept my fate. I just used to console myself that I want to make heaven. coz I know there, there won't be a crisis
Dear please drop your account details. I will be of a litte help
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 1:35pm On Jun 03|
Good day sir..Since I Saw this message I've been trying to call Azeez all to no avail. Sent him texts too but no response. I sincerely hope he's doing fine. I'll let you know as soon as I can reach him
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 10:19am On Jun 11|
Good morning Fam.
How was our night?
Please let's respond to d following questions . Please
*Question of the day*
��Have you ever been referred to as a sickler?
��Were you offended by it?
��How did you handle it?
��What's your take on the term "sickler"? Should people living with sickle cell be referred to as sicklers?
�If you're not a warrior, have you ever called someone a "sickler"? How did you think that made them feel?
Let's share our thoughts on this.
|Re: LIVING With SCD(Sickle Cell Disease). by lizdammy: 10:24am On Jun 11|
Am a sickle cell, am 22yearz old. a dropout. at age of 10 I had priapsm. which I had erection for almost 20days later got burst at day 20. from then I.can't. av erection. I came from a poor family, a mother who care and a father who don't. we are 5 and am the only sickler. av never been to hospital b4. when I get sick or had crisis, no matter how hard it is, I will have to stay on my bed and endure. am sad. but nothing can be done. av accept my fate. I just used to console myself that I want to make heaven. coz I know there, there won't be a crisisMay God heal you in Jesus name.
You shall enjoy life here before going to heaven.
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 3:15pm On Jun 19|
Its WORLD SICKLE CELL DAY!
We celebrate all warriors around the world.
We are warriors!
We are strong!
We are brave!
We are winners!
We are made to harvest the best of the earth!
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 11:15pm On Jun 19|
I may not know much about Sickle Cell Disease but I know enough to tell you that having the disease is a lifetime job. They tell you
-stay warm ,
-take your drugs
-don't stress yourself,
-avoid high altitudes,
-stay hydrated (@least 6L\day)
and then you have d guts and call me Lazy because I know my limit, you sure dunno what you're saying sir and ma
You dunno what it takes to be them and they didn't bring it upon themselves either.
The ignorance of a couple in love did it and they are bound to live with it for life.
So, love a sickle Cell warrior today.
I'm using this medium to encourage myself ,my warrior friends , my warrior patients and every wonderful caregiver. We see you❤️❤️
Keep Fighting Hard Flexed bicepsFlexed bicepsFlexed biceps
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 10:41am On Jul 08|
Please visit the link below to view this post by Makinde Titilayo titled Sickle Cell and unintentional bullying.
Everyone bullys us ranging from
Doctors,nurses, friends, etc.
I remember a time when I got sick in school ,we were on clinical posting then , so I informed my class rep and clinical posting rep individually that I wasn't fine and needed to go home. They knew my condition so they asked me to go home that they'll inform d lecturer in charge on my behalf.
So I went home. Few days later , my reps called to tell me the lecturer insisted I must come back to school immediately if I didn't want to forfeit the upcoming psychiatric posting trip to Abeokuta.
I felt so threatened. So I got on d bus back to Osogbo, I cried during that trip but I made a friend too.
2 weeks later I fell seriously ill, was admitted to the school health centre and then the lecturer who threatened me came and said "Ha ,sorry, you should have stayed at home when you knew you weren't really fine"
I was so mad but I kept my cool.
She now said I should go home and take care of my self.
This is one of the numerous bullying experiences I've had.
But we keep moving.
Never let bullies get the Best of you.
We're unique in our own way�
|Re: LIVING With SCD(Sickle Cell Disease). by hinere(m): 2:34pm On Jul 08|
People of God. You too can be free from Sickle Cell. Let me just share this short testimony.
On the 1st of July (lastweek wednesday), a man woke me up telling me that I introduced him to PhytoScience Double Stem Cell. I was still feeling sleepy but I tried to respond. He said I discussed about the Double Stem Cell to him concerning his Sickle Cell child.
He sounded so happy and excited as he told me his son started the therapy 3 months ago and till date the son has been strong, playful, and active unlike how he was before. He even said the son beat up a far older child. He said this with joy. I was happy to hear all this because it showed God had started something in that little child's life and in the life of the family. He ended the call by reminding me of all the other things I told him about the therapy which I had even forgotten about. He ended by thanking me from the bottom of his heart.
2 days later (3rd of July), two of our Sickle Cell Anaemia patients (A 14yrs old and 4 yr old) got converted from SS to AA after taking Phytoscience Double Stem Cell Therapy for a year. 2 laboratory test confirmed it. My joys this past week have known no bound.
Where am I going with this story. There is hope for you. I always try to talk about how God is using PhytoScience Double Stem Cell to heal his people but most people still prefer to live in denial. I have been abused, cursed, insulted on this group so many times but I won't give up because I can't know what can help someone and keep it to myself.
There is hope for you all if u believe. Pray about it. Tell God to guide and lead you. Tell him to reveal whatever it is known or unknown to man that will bring you freedom and i know He will answer you. It is well with you all. Please Stay strong and believe that with GOD, there is always a way out.
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 7:59pm On Aug 07|
SICKLE CELL AND ADDICTION
Life struck again and I lost my dear mother March 2014 also due to sickle cell crisis. And this was the beginning of the end for me. When she died, her sister made a statement to me that I am now a man and men don’t cry. I braced up and bottled it all in because I am now a man. The dosages and the frequency of injecting skyrocketed. I started taking 30 vials of Pentazocine daily 6mls per shot. The frequency was five times a day.
|Re: LIVING With SCD(Sickle Cell Disease). by omozu1(m): 6:14am On Aug 08|
ezugegere:Great works May God reward you.
|Re: LIVING With SCD(Sickle Cell Disease). by omozu1(m): 6:32am On Aug 08|
One big problem warriors have is that their red blood cell don't live long like the other persons and that is why you have crisis and complications and other health problems. You have little or no red blood cell to carry oxygen round the body please try this and thank me later
Get some punky leaf ( ugu leaf) I mean the come vegetable leaf we buy in the market
Squeezed some like (100 naira ) and drink
Do it like two times a week
And eat a lot of vitamin c rich fruits and you will live healthy.
The juice from this green leaf will help your body produce new and many red blood cell always that will help your body function well.
Please try it
And don't mention me or ask me ? If you have not if you have not try it
|Re: LIVING With SCD(Sickle Cell Disease). by Israellionel: 4:54pm On Aug 08|
Was Going Through The Health Section And I Saw This Thread. I'm Not Sickle Celled But Y'all Are Heroes. Seeing The Comments Here Makes Me Realize That Life Is What We Make It.
What Y'all Are Going Through Ain't Easy.
Y'all Call Yourselves Warriors Right?
You Are Indeed Warriors.
I Would Love To Talk To Some Of You Guys. If You're Willing To Talk, DM Your Number.
I Love You Guys.
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 9:46pm On Aug 08|
Thank you @Israellionel for visiting this thread. Thank you for d encouraging worda, they really go a long way.
|Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 9:52pm On Aug 08|
Dear warriors, it's generally a cold season, you're responsible for your own wellbeing.
Do the following and keep safe wherever you are........
1. Eat small portion at a time to avoid constipation as digestion process will be slower
2. Eat foods and fruits rich in fiber and drink a lot of water especially warm water
3. Avoid anything cold, it may affect your immune system and allows internal fats to congeal around your body internal organs
4.if you have low hair cut please try to put on your cap, turban or something to cover up to avoid cold
5. If your floor is tiled please put on your socks. Don't walk bear footed. Mostly at night, put on the socks overnight
6.Please if you have the aged ones keep them warm as they are more vulnerable now
7. Please drink more citrus fruits like orange, Lime, lemon, and also pineapple. Add them to warm water to boost your immune system
8. You can as well take ginger tea , garlic tea, tumeric tea, moringa tea and please don't forget your Vitamin C ,( the white for the adult and orange for the children). Remember Vitamin D as well.
9. Don't STRESS yourself
10. Take your routine medications as prescribed (don't be like me)
Have a wonderful night rest.
|Re: LIVING With SCD(Sickle Cell Disease). by rxmusa(m): 12:06pm On Aug 10|
Fhunkhy1:May God's unending favours and blessings always manifest in your life
|Re: LIVING With SCD(Sickle Cell Disease). by Chii59(f): 12:27pm On Aug 10|
hinere:Stop it. Just stop it.
|Re: LIVING With SCD(Sickle Cell Disease). by Chii59(f): 12:28pm On Aug 10|
Fhunkhy1:Keep up the good work.
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