STAND ALONE NARRATIVE
THE HORROR OF LIVING WITH CHILDREN WITH SS
Hello ,Stella. I just need to pour out my heart as I am slipping into a very dark place and I can't help myself.
Hello ,Stella. I just need to pour out my heart as I am slipping into a very dark place and I can't help myself.
You may remember me from about 2years ago,I sent a chronicle after finding out that my children ( both of them) have sickle cell disorder. It was a rude shock for me as I have always known I was AS and had to call off about 3 relationships because they were also AS genotype,knowing the risk involved.
I married my husband after he tested AA. Unknown to us,it was a medical error and we didn't realise it until after 2 children. Since then,I have been doing my best to take good care of them with their routine drugs and diet. But the past few months has been hell for me. I have been going to the hospital every week,back to back,as they keep having crisis one after the other.
I have prayed endlessly but it's as if God has turned his back on me. Just 4days ago,the younger one started having crisis at 2am. It was really bad and he was struggling to breath. I am in a new neighbourhood and I am not even mobile. Couldn't get a taxi at that time of the night. I had to go knock on a neighbours door who lives 3 flats from us and we were taken to the hospital to stabilise him after taking oxygen for about an hour and given treatment.
I have become a shadow of myself. No sleep at night,I mostly sit and lean on the wall,massaging using hot water and balm. We have incurred so much debts as a result of seeking treatment ,buying routine drugs monthly. Yet, the hospital trips keep coming up. These days I have even lost my voice to pray.
Not like I don't believe in prayers but,my faith is exhausted.
My 30th birthday is in a few days and I do not even wish to see it as my life no longer have meaning. This is not how I planned my life. I am already hypertensive and feeling sick right now,yet I have to look strong for my children. I remember how I prayed as a young lady before entering into marriage. I tried my best to live a decent life,yet I couldn't get a happy home.
My family and some friends believes I should be going for prayers,deliverance to seek healing for my children. I get different invites to bring them for deliverance. You know how people tend to see you as the worst sinner or not praying enough, because you have numerous problems. Some judge me to my face and even behind my back. But I believe God knew exactly what he was doing when he let this befall me.
Whats the point running from pillar to post now,stressing the children up and down? The last time we went for a vigil,one came down with serious crisis that took days to recover. I look at the mirror and i see the once beautiful and happy me faded and aging rapidly. As for my marriage,its a story for another day.
These days,I don't even have the urge to do anything,even to come out of the room or cook to eat is a problem. I feel so empty,so useless.
*Madam i remember you and the story...I don't know what to say but to pray that God gives you strength to carry this burden of taking care of your sick Children.....
I hope people who are not matched genotype wise are reading this and seeing that the love you share will vanish when the sick kids start arriving..IT IS NOT WORTH IT,BREAK UP NOW!
This is so heartbreaking,God will visit u is all i have for u,there was this child too in my formal schl,whenever we call on d parent that he's having crisis like dis,the rate at which d woman will drive in and be crying endlessly, it is well with u and ur kids ma'am
ReplyDeletePoster I read someone giving testimonies about one chewing stick called (Orin Aata). You will buy it and cook with water for like 10mins and start giving them to drink, half glass cup.
DeleteGo to anywhere they're selling agbo (herbs) or elewe omo and ask for (Orin aata) the "aata" is pronounced as (ata) pepper in Yoruba, if you're in Lagos, I can buy it and come and give it to you. God will lay his complete healing hands on them
*Larry was here*
Hajia u again, always having a story to tell
DeletePoster please endeavor to always make sure they eat good food at the right time, drink plentyyyyyyyy water, rest well and the major thing they should take their drugs religiously.
DeletePlease if you are in Lagos try and visit the mtn foundation in Lagos for sickle cell patients, the treatments are almost free, I guess they are in gbagada, don't know the name of the hospital.
They will scale through in Jesus Mighty name....just as my cousins(male n female) did. They r both 28 n 25 now respectively. Just don't give up on God.
DeleteNa wa ooo. Even when you were very careful. Don't give up please.
DeleteStarry. How did you know Orin Aata? Talo ngbe é rin?
God bless you Starry Larry. This is not the poster, BTW.
DeleteTrue!! @ starry larry.
DeleteI've heard of that ori aata before.
My ex-boss has a sicklar brother in the US and that's what they send to him till date. A sicklar man of over 40 years. They said when he has One major crisis at 11 years of age, they very reluctantly gave it to him as a last resort and since then, they don't joke. Their father was a Prof. and their mother a PhD but this his brother has been drinking that particular herb for decades. Said he also met a woman in her 50s who is SS and confessed to the same thing since she was in high school. That she takes one a glass a week or something like that. She's now trying to crowdfund a research on the particular herb and see if it can reduce the effects of sickle cell.
@poster please try it.
If a this was a reasonable come entry with a functional justice system, you could have sued the hospital and they'll cover the cost of the kids till infinity.
DeleteBabe, I feel you badly. Please take your kids to ofm auchi n ask the pastor to pray for them. Don't keep suffering when there is a solution. Their blood groups can be changed to AA if you have faith
DeletePoster please don't give up. I have been there. Trust me when I say it's not easy at all. I'm not yet married. But I have seen it all because I have two younger sisters and they are both SS. If I should tell you what we've been through eh, is it stress, expenses, emotional torture?
DeleteBut God has been faithful all through. And they are age 24yrs and 21yrs respectively. Although we still watch them closely and of course they still have crisis. But God Will definitely see us through.
Please keep pushing. Make sure they take their drugs religiously. Especially Folic, B-Co, Asprin, Calcium, Diclofenac, Astymin, etc. And more of fruits and water.
God will definitely come through for you and your kids.
Larry and Chikito, thanks for your contribution. I will put that into consideration.
I broke down reading this.
DeleteI have 2 SS in my dept at work(36 and 24 yr old). Just keep them hydrated and away from cold. that's what I've learnt from both of them.
Stop taking them out at night. Also feed them well.
It will be well with you
Madam, may God give you the strength to take care of your kids,but also know your kids are going through a lot worse..
DeleteI will say a prayer for you and your family. Do take care
Very painful and worst sickness ever,I and one of my brother are sickler out of 6 children. Growing up was hell because we and hospital were 5 and 6. Am 25 and my brother is 34 years and about to get married,the only reason we are still alive is because of GOD. Please stop taking your children to NIGHT Virgil because of COLD, this is the name of the drug that I use Dioscovite. Go to your family doctor and ask of it But it is costly one bottle is 7,000. Close to 3 years now I haven't been to the hospital about the crises,just look up to God because he is the great physician.
DeleteMadam, STOP TAKING YOUR CHILDREN TO THOSE GATHERINGS
DeleteYes, I’m screaming!! You’ll kill them faster! Whoever wants to pray for you, let them pray for you from wherever they are. Stress and exposure to cold and mosquitoes may kill your children faster...
I did not hear you mention your husband in all these... when hard times hit a marriage, unity between the spouses make a huge difference on how the issue is combated especially when it’s a chronic problem like this..
Finally, focus on keeping them out of the hospital. Mosquitoe nets, hydration, daily probiotics and anti-malarial, anti-cold dressing, yes, that herb works! Also let them know they can’t be playbig rough like other kids. A bit of money would’ve made a huge difference. I really feel for you. If Stella makes your Acct number available I would send in what I can
Also, research for organizations that provide help and support in your locality. Go to government hospitals and ask questions. You can never know what support you can get
The solution is bone marrow transplant which is a huge sum and what we had to do for our son. It was a sacrifice but we just had to do it. But before then, the above tips will help.
Sorry mama...
ReplyDeleteDo ur best for the kids..
Damn that medical error
Meanwhile there are couples who love has made them selfish, make una dey hope on pre G testing una hear....selfish blokes..love killi me.
Try to watch Dunamis tv (Dr Paul Enenche) every Tuesday for their healing and deliverance service at 9:30am.
DeleteYou’ll be shocked to see testimonies of blood group change.
Pls singles. Always do the genotype test in 2 or 3 places before reaching a conclusion. If this madam's hubby had done like two more tests, the error would have been revealed
DeleteSo because of that people with an As genotype should be selfish enough to get married den go to the pastor for healing
DeleteIn every situation give thanks for this is the will of God in Christ Jesus concerning you.
ReplyDeleteIn all things, God works for the good of they that love him and are called according to his purpose.
Kindly google these verses and read the chapters.
May God work this situation for your good madam.
I feel so down reading this. God will comfort you and perform a miracle.
ReplyDeletePlease, intending couples should try more than one hospitals and labs when checking for genotypes and blood groups.
Please do not take them out at nights again. Cold and sleeplessness is the number one enemy of sickle cell patients.
ReplyDeleteMake sure that they finish their water bottles filled with water while at school. Dehydration makes the crises more often and with more deadly outcomes. Ever noticed that once they rush those "drips" in the hospitals, they get well? Dehydration is the number 1 enemy.
Please madam, give them water, more water and more water.
My pediatric professor in medical school was a sickle cell patient -ss and he was 56 years old. He taught us the thing very well.
Well said Anon 15:15
DeletePoster try and google how to prevent crisis for sicklers. There are some healthy choices that can reduce the instances of sickness. I have ss friends who hardly fall sick but it’s because they are grown and they understand their bodies. You will have to help your young ones till they learn to make the right choices.Gods favor.
True @dehydration.
DeleteI'd just keep reading comments as I'm sure many people would have already echoed my mind.
Poster cheer up!its not all bad
Please drop posters contact. I have lived with siblings that are SS and both are over 30.let me give her some do's and donts
ReplyDeletePlease, stop with the deliverance and vigil trips. You are damaging their psyche. They just have a medical condition, not demons and witches. Don't make them depressed please.
DeleteI understand that you are frustrated because it's not going away,but you see, SS hasn't gone away either from their genotype. So, until u can afford stem cell surgery, you have to learn about this condition and accept it and deal with it as it comes. Have you asked your kids how they are holding up? Abi you think you are the only one depressed?. You have to be strong for your kids.
You have to tell them you love them and are proud of them for holding up.
They MUST sleep under mosquito net, they shouldn't play outside in d evening cos of mosquitoes. They MUST take their routine drugs daily paludrine and folic acid.
*They MUST DRINK plenty /LOTS of water. AVOID COLD AT ALL COSTS. THEIR MIDDLE NAME SHOULD BE SWEATER. THEY SHOULD NEVR TAKE HERBAL MEDICINE, NEVER UNLESS YOU WANT THEIR KIDNEYS TO PACK UP. IGNORE THAT ADVICE UP THERE ABOUT HERBS. LASTLY, FIND SIXKLE CELL SUPPORT GROUPS IN YOUR AREA AND JOIN, YOU NEES ALL THE INFORMATION YOU CAN GET AS THIS IS FOR LIFE FOR THEM. PLEASE DON'T LET YOUR CHILDREN OR YOU GET DEPRESSED, PLEASE ITS NOT THEIR FAULT NOR YOURS. LIFE JUST DEALT YOU A LEMON CARD, PLEASE MAKE LEMONADE
Say it here, you can help others too. Let knowledge increase and help more people save lives. God bless you as you do.
DeletePoster please place them on plant stem cell ( double stem cell) therapy. They will be alright. May God strengthen you.
DeleteWill they hear. That's how one of my friend made me an enemy after giving her this advice. She went ahead and married the guy. Poster sorry about your kids. Just brace up. Sickle cell never disappears. The level at which your kids fall ill will only reduce as they get older. I know the feeling. Just speak positive things into their lives. Feed them well. They should use their drugs always. And don't expose them to cold. That said have you considered placing them on HMO plan at least that will reduce the medical cost to a great extent. Stop taking them to unneccessary church programmes please. Pray at home and go for your regular service and fellowship.
ReplyDeleteAdviser of the universe!!! Who even wants a friend like you?
DeletePoster it is well with you and your children. Just be strong for them, God is your strength and your children are healed in Jesus name.....Amen
ReplyDeleteMeen, no money to even take care of the sick kids.....
ReplyDeletePoster, it's well with you and your household....
chim-oma aka Miss Kapusu
Take heart dear. Please accept your fate and stop wasting your time looking for miracle. Miracle do happen yes but not in natural situations like this where God had given us the wisdom to make the right choice.it wasn't your fault. Taking care of SS children is hard work, becoming an evangelist wouldn't change that.when its time for you to have peace God will visit you in his own way.
ReplyDeleteAmen! I like this advice. Poster take note. Don’t take them to churches. Build your faith at home. You have high blood pressure, you shouldn’t be going to vigils and having sleepless nights. The sleepless nights when the kids have crises is enough to keep you awake. When they don’t have crisis, sleep well and let your body recover. Don’t take them out in the cold, let them have a tight schedule and take their medication. People have also told you that lots of water is good for them. No juice or all this rubbish drinks with additives and sweetener. love them with reckless abandon, through them and in them you will see the goodness of the Lord. Have a positive attitude! As they grow, the crises will ease. They will not die young IJN. You will see their children. Chin up, you are stronger than you think.
Deletevery very ignorant comment....john edet you do not know your bible if not you wont say miracles do not cover natural situations like this...you dont even know what a miracle is....God can, will, and has changed SS to AA...stop limiting God please...
Deleteposter keep believing and don't stop praying but don't take them for vigils..God heals wherever you are..don't have any personal experience with sicklers but just just try go to sickle cell foundation for more guidance....may God help you IJN
The day I saw my cousin years back in crisis, I knew sickle cell isn't a sickness you'd wish your worse enemy. An only son; he died at 27, leaving his mum devastated.
ReplyDeleteAnd this is encouraging how? Mescayana oshi! I know someone who is in his 80s and ss
DeleteThis is so sad.
ReplyDeleteLord pls heal these children
Look into bone marrow transplant
ReplyDeleteI doubt she can afford that. Speaking of a transplant please contact sickle cell centre yaba, and crimson bow initiative they may be of help. I would advise you to find a way to go abroad with this kids, that's the only chance of them getting a cure. Find a way, NGO, seek asylum. I know a couple who did and they are doing so well. It's well, in the meantime join support groups and get support from initiatives like crimson bow/sickle cell warriors etc.
DeleteI was just about to type this when I saw your comment.
DeletePoster if you have the money, look into Bone marrow transplantation. We have profs in Nigeria who have recorded successGil bone marrow transplants. With this, I assure you that your kids will suffer very minimal crisis. Please look into it okay and don’t relent in your prayers. God does not give you a cross you cannot carry. May He strengthen you and heal your kids🙏🏻
Anon.do you know how much bone marrow transplant cost? It's not even done in Nigeria and chances of survival is low.
DeleteWe all should be very careful, especially if u are an AS. I never bothered myself cos we All are AA in my house.
I still advice my friends that are AS to be wary and very careful. It should be noted that Genotype is not the only test to be concerned about, blood group is another killer issue. Stella, I think u should do a post on rhesus factor. Please ladies, if your blood group has a negative sign, like O-, A-, AB-, etc, u have to be very careful. This has made a lot of women childless.
Mhiz A it is done in Nigeria now. My friend’s hubby is a consultant in that area. He even runs a federal government approved private hospital in Benin where it is being done and the success rate is amazing. Only that it’s expensive.
DeleteI thought d transplant was a total cure....
DeleteMhiz a I'm rhesus negative with a positive husband.ol one needs is rhogam injection within 72 hrs after delivery.the injection s a bit expensive though.it cost abt 33k his n Kano.
DeleteMadam I feel your pain,don't give up hope, don't give up on. I have seen people that their genotype got changed miraculously. It won't be fair of me to say eyah sorry and just pass by, knowing fully well that all hope is not lost. Have you tried going to either Dunamis or Winners? If you are close to Abuja you could visit Dunamis and meet the senior pastor, he has a passion for cases like this, if you are in the West you can visit cananland, if you do not have direct access to papa, you can talk to any of the pastors and they will link you up to him or his wife or pray with you, same with dunamis. You can even check the Facebook page of Dr Pastor Paul Enenche or that of his wife Dr Mrs Becky Enenche, you will see a contact there that you can send a mail to or call.
ReplyDeleteDon't loose hope, don't give up, don't let your faith dwindle, remember in scriptures the dead were raised, there is nothing too hard for God, science may not know what to do but God is not out of answers. And please don't let your joy be affected, remember a joyful heart is good medicine but a broken spirit dries up the bone. Stand tall and fight for them and hold unto God and just like Jacob don't allow him go unless he answers you.
P.s I recommended these two churches cos they are the ones I have first hand information about and they won't charge you a kobo to see the pastor or ask you to sleep in the church.
Remember Hold on tight to God and do not let him rest until you get your answer. Remember the syrophonecian woman in the Bible that told Jesus her daughter had died and Jesus didn't answer at first, she held on and got her daughter raised to life because of her faith. Read scriptural stories like that, that fuel faith and shut out any negativity
Hmm! I know 3 people whose genotype changed too. One is my dad's friend who is in his 60s. However, I think it's this type of advice that makes her drag them to church and they go home sick. Allow the poster to build her faith on her own conviction. Until then let's give practical advice.
DeleteNo bite me na advice wey I give oh...
Hahaha Chikito I no go bite you lol. You have a valid point. She doesn't need to take her children there, she can just go with a point of contact, maybe their pictures. And yea she needs to build up her faith but since she is getting weary, she should seek help as soon as possible.
DeleteMadam don't worry God will visit your family and restore joy
Those heartbreaking to read. Words fail me to comfort you but I just have to tell you to be strong and of good courage. It is well.
ReplyDeleteSo sorry sweetheart,e-hugs to you again and again.
ReplyDeleteReading your story made me confident and happy about a decision I made 3years ago.A man from my town who is based in the US came to ask for my hand in marriage.My family loved him to a fault and wasted no time in urging me to marry him even when we found out that he was AS just like me.He claimed that he loved me and must marry me,told me about his Doctor friend in the US who can help us time conception so we don't end up having AS children.
I refused to marry him + his money and he finally settled for someone else and till last year,he kept flaunting his money and wife on fb thinking I will be jealous.
To be honest,when I think of his money, I feel bad not marrying him but then I think of the pains my children may go through tomorrow because of the love wey been dey our eyes last 3years and
I thank God for the grace he gave me to say NO and mean it.
Poster,e-hugs to you once more,this too shall pass away
And you're still single right??? Mtcheeew
DeleteAnon 17:25 you must be a big fool!
DeleteIs being single a curse???
Ewu!!!
Yes anonymous, she's still single.. 😂
DeleteHmmm!! Money wey you for use do that IVF selection thingy...... US doctored would have sorted you out real nice. They won't have let you have a sicklar child.
DeleteYou even have the effrontery to tell someone that their sad story has made you 'happy and confident' in the so called right decisions you made??... 'America wonder', 'facebook', 'flashing wealth' 'money' yada yagi yagu.
DeleteIs this the right time to be sharing that?
Many of you don't have sense, zero sense, you lack empathy. The poster is down, at breaking point. And you spent 3 paragraphs talking about your own life issues and then managed to spare one weak ass line about sending e hugs???? Oponu. Mouth like broken whistle.
Poster, scroll up there are support groups. Please join. You are feeling overwhelmed and it's understandable.
Dry your tears.
Fight for strength.
Sometimes it's hard to pray. Ignore human beings, God understands.
Send your number to Stella, so people can reach you.
Blessed.
IVF with PGD will have sorted you out. It is covered under insurance in some states if it is done for preventative purposes like sickle cell. For a normal healthy couple, IVF success rates are pretty high. There are also other medical options that is up to the couple to choose. Now I cannot encourage AS-AS marriage without money and living in Nigeria.
Deletebabe, u messed up ohhh, you for marry the guy, even in our Lagos here they do that selection thing talk more of america where the process will be more advanced, in Lagos I think its about 100,00 or so, what they do is that at about 3 weeks of conception they determine the geneotype of the unborn child, in america their own is very advanced, before even the foetus is fully formed :-) dont worry your husband will come
DeleteHmmmmmm oh Allah na!!! It's well madam
ReplyDeleteDear Poster please you do not have to take your children along for those vigils and programmes. you would only end up stressing them more which they do not need. even those who are not sickles are stressed out after vigils. do ensure thay take lots of water fruits and let them be always warm. sickles can be managed with the right knowledge of what to do.
ReplyDeletei have a friend that her parents had 5 sickles but she only survived because she took care of herself from young age.
Dear Poster,
ReplyDeleteGod sees your daily struggles and he will answer you. My Jesus will never leave you. Hold on pls, do the best you can.. read articles and other awareness stuffs and learn how to manage them, you will testify in Jesus name Amen. You and your kids will age gracefully. My God will financially reward you in Jesus name Amen
Much love.
I know a guy that is AS and has been dating his AS girlfriend now for 10yrs or more since school days,they didn't know about the genotype thing when they started dating age 18 and 19. They even got engaged a while back. He was trying to break up with the girl years ago when we were close but he really couldn't. The time he tried the girl attempted suicide I heard. People have told him then not to even try it. The girl has done So much for him, they have been through much. Even I didn't buy the idea of break-up because their love is strong; and I like The girl. They are adults and are aware of the risk but choose to continue. The parents are in support I heard bcos of their closeness. The guys parents especially love The girl.
ReplyDeleteThe guy told me they will do this genotype selection IVF. Iv lost touch so don't know the conclusion.
Poster the Lord is your strength,the kids are already here. All you can do is keep caring for them and read up on preventative methods and also join SS family support groups. They will help you with advice on their care.
AS and AS love can like to strong eh.
DeleteIf they do selection, then they'll be fine. It's just sometimes all these faith people lie that when will select but end up "faithing" it
DeleteNot worth it..d ivf is not a one touch success, its a gamble..emotional n money gamble.
DeleteIf i were AS and i meet a guy that's AS, we would marry and just save up for IVF selection. There's too much sceince for me to come and leave my soulmate over what isnt my fault. Frankly, I think many AS-AS couple's overreact. When there's money you can arrange certain things.
DeleteSome of them don't have the money yet they go ahead and marry
DeleteBone marrow transplant and gene therapy can heal them but very expensive but hey, when there's a will, that's a way right? I advise you research into that and seek the funds.. ..Gofund me is a way to go. God will see you thru.
ReplyDeleteBREAK UP NOW!!!
ReplyDeleteYou well so??? She should break up with her children or her husband🤷♀️🤷♀️🤷♀️???
DeleteIf you had even a drop of sense, you would know that my comment emanates from Stella's red pen advice to intending AS couples.
DeleteThey dont like drastic and sudden weather changes.from hot to cold or cold to hot. They dont do well with malaria so prevent mosquito bites. Use net and insecticides. Give them sunday Sunday medicine or antimalaria as its called. If you are in Lagos look for that professor that owns the sickle cell research place/foundation. They have an office/hospital in Victoria island. I grew up with siblings that are ss. And make them take plenty water and ugwu.
ReplyDeletePoster, I understand your stress.
ReplyDeleteFirst thing first, make sure your kids are always hydrated, once they pee it must look almost like water.
Secondly don't expose them to extreme temperatures (heat/cold)
Third, there is this med called DISCOVITE, it's liquid and and all you need to do is give them 1ml drop in water or tea (you can do it once aa week).
Fourth, give them folic acid daily.
Fifth, figure out if they are allergic to any food. I recently stop eating pizza because after eating it, it's crisis that night.
The stress of taking care of a sick child is honestly hard, till today my mom is my hero.
Lastly make them local juice(ugwu) that is one thing I miss so much.
Wash ugwu leave, squeeze out the juice (it's not sweet for kids) so add liquid milk to sweeten it. Give them atleast twice daily.
Don't give your kids any multivitamin coz of excess iron. Multivite and astymin are the only ok ones.
Poster, biggest hug to you but you LL have to turn to local nurse for your kids and keep trying different stuff till you find what works!!!!
If you have any questions, leave it in comment section. Will come back to read.
Biko it is ugu, what is ugwu, ugwu Na hill ooo
DeleteI like your advice, even though I’m not the poster, God bless you.
DeletePoster, take them to the big sickle cell center opposite luth for routine check!
ReplyDeleteAs for marriage, it's not easy! My mom was everywhere for me while my dad blamed me for falling into crisis 🙄🙄🙄🙄🙄.
Shout out to all the partners living with sickle cell spouses, we appreciate the support!
Indeed we do. My hubby took the baton from dear parents and has ran the race for some six years and like a pro till date. May the almighty keep them strong, healthy and happy.
Delete#UmmuKams.
So sad...part of d reason why am still single...na only AS pipo I dey see Wey their head correct. Lost 4 suitors cos am AS n I no fit shout mbok.
ReplyDeleteIt's really well with yu madam. May God come to your rescue.
NNE take ur time correct AA bobo go come. I really feel for this woman.
Delete😙😙😙😙@Steffy
DeletePoster please endeavour to see to it that they drink water first thing every morning as a daily routine as it will help to reduce their crisis
ReplyDeleteI am currently dating am Ss guy, I am AA though..... We plan on getting married by next year. He hasn't had any crisis since I came into his life 4yrs ago but I am scared of the future. I love him to bits and can't imagine a life without him.
ReplyDeleteAny advice for me?
Well you are AA. But you must educate your kids to not marry AS or SS. Also try to secure your future by making sure you are next of kin and having some sort of savings or investment you can fall back on if something happens to your hubby. Continue to pray for him, he could even outlive you.
DeleteHmmmmm youre certain what you want to go through with this? Love is not always enough in most marriages. When some life challenges start,love will fly out of the window like an endangered specie.
DeleteAn SS lady that is my cousins friend is about 40yrs old now. She got married 7yrs ago and it was a great challenge getting her mother inlaw to accept her and the union.
She finally caved in but wasn't even looking happy day of the wedding. They said she feared her son being a widower early in life.
They are still married today and have twin boys around 5yrs old that are AS I heard.
I dont hear of her having serious crisis though and she's 40yrs old.
It's possible your fiance is part of the lucky ones like this lady that don't get much crisis in their older years. Good luck
Thanks alot Beds and roses and Anon, I appreciate your input.
DeleteAnon 16:11 HAVE NO DOUBTS!
DeleteYou're AA so you can birth healthy children. He can also stay strong if you adhere to certain rules. Sickle Cell isnt a death sentence. They are loveable and can be loved. I know a few who are alive and well. The only one I knew, who is late, died when she was 8 years. After a certain age, they live as long as others.
Anon 16:11
DeletePls go to another lab and test your genotype to be very sure so you would be sure they didn't make the mistake they made on this woman's husband
But of course!
DeleteWell I am one myself and I'm glad hubby chose me regardless. Six years on, with a boy and girl to boot and I keep thanking God for him. You can also be his Superwoman. His support system and the one great comforter in his life
What is the biggie anyway?
Anyone may die at anytime and I assure you malaria kills more people in Nigeria than SCD. Your individual genotype already guarantees you wouldn't have Children with the Disorder. If finance or access to reasonable healthcare may be a problem though, then please re-think if not, I say Go for it girl!
N.B: I find the term 'Sickler' quite offensive and so does a number of us. It's not even a medical term nor is it an English word. HbSS perhaps? Or People/Person with Sickle Cell Disorder.
#UmmuKams
@poster, ask for help if you need it. Is your mother or a mature family member able to come over for a few weeks or a couple months to help out so you can get some sleep? As women, we want to act like we can do it alone, but with two very sick children this is impossible. You are only human and the stress can be heavy to deal with. Do not feel ashamed or less of a woman to ask for help, there is no shame in asking for what you need in life. Do not answer the knock of depression, your description of your current mindset is of one who is wanting to give up. Please do not let depression seep into your life. Start doing something that is just for you, could be exercising, starting up some long forgotten hobby, learning a different language..whatever it may be have something that is just for you so that every waking moment of your day is not just focused on the children.
ReplyDeleteYes, I wish she will take this advice. She needs to do something for herself. To take her mind off her problems temporarily.
DeleteIF at first it feels heavy, tarry for it will feel lighter in time. So i lost the love of my life to sickle cell. He was only 21 at the time. A few years later, i moved to London and met one amazing girl (now woman and mother). Shehad sickle cell, Ialways felt sorry for her cos things i took for granted were hard for her. My degree took 3yrs, hers 5.But God is faithful. She is still alive today. She is even so strong now she has a regular life. This is your cross, carry it but rest assured, God will lighten your load. You must be strong, he knew you even before you were. My thoughts are with you and yours
ReplyDeletePoster please try to follow the rule and regulations on what to give them and not give them plenty of fluid and fruits and keep them warm and don't give them any medication with iron and don't like them take things like cold water, ice cream and cold drinks. There are some cheap medication you keep at home in case you noticed crisis, not rushing them to hospital all the time . Lastly don't allow their blood level to go down, give them Astymin and don't miss their routine check up. God bless and strengthen you for them.
ReplyDeletePoster I forgot, keep them away from mosquitoes! Give them proguanil everyday and let them sleep under nets.
ReplyDeleteMalaria and sickle cell don't go well, it must result in crisis!
please hold on and keep praying. your change will come
ReplyDeleteI know an SS woman that's almost 60years. She doesn't expose herself to cold. She always cover up. Also avoid mosquito bites.
ReplyDeleteDon't give up in prayers. Miracle still happens. Sandra's genotype was changed from SS to AA during a church program in the course of prayer.
Poster God will give you strength. Please follow the advice given so far. If you can relocate abroad in the
ReplyDeletenearest future (preferably soon) the better, because most people I know with SS, leave long and healthy abroad. GOD bless you.
Dear Poster,
ReplyDeleteI'm sorry to hear about your situation. However they are now carrying out bone marrow transplants and stem cell treatments to actually cure SS here. If you can get them here and contact some catholic charities about your plight, they may show mercy and foot the bills which is probably going to be $ millions. I know a family here where the daughter successfully went through the process and is no longer SS. It's not fiction. It's a fact but find your way here first without declaring your intention and apply for medical asylum after you get here. Then contact all the charities in the yellow pages. I pray God shows you mercy.
poster sorry about this. I also have a 2 years old sickle cell that has never had any crisis since birth although he takes penicilin twice a day for infection and hydouxyrea tablets once a day. the hydrouxyrea is not yet in Nigeria, we are lucky abroad. it does not make there blood sickle, infact regular usage equals there blood to am AS child. ask good pharmacies if they have it in nigeria. stop going to church, it wont change anything. please they need penicilin antibiotis twice a day to prevent infection. dont give up . E hugs
ReplyDeleteHow can I support you with a token? I will inbox Stella my email. Drop your account details with her. Please is something small o.
ReplyDeleteOh my Good! What horror. Poster, praying you receive help, grace and succor in these trying times.
ReplyDeleteThis rings close to home. In fact my gp told me to sue the hospital but I refused,it's still the same govt hospital that cured my daughter. My story is long . I was told to come for testing for free but I refused I didn't want to abort her in case she had sickle cell ,and she did. You must come to England to seek asylum that's the only way you can survive this . I was mad at one point. On the day of her baptism a white man from nowhere came to us and said it was revealed to him in a dream that the girl is a special child . She truly is . To be continued
ReplyDeleteContinuation my child is special ,so are yours. Every night before she slept I pray over her . She only had one devastating crisis few days before she clocked one that rendered her handicapped for months she couldn’t walk.i became an expert on sickle cell. I upped her dose of folic acid . I prayed like a mad woman daily . Meanwhile her evil dad who hid his status from me was giving me hell! !! A very special demon that man was thank God he took out of my life for good !! She developed ulcerative colitis on top of it . She would stool only blood on a daily basis. Imagine an anaemic child stooling blood !!,I became madder !! I have to stop here tears are beginning to blind me. Poster In the name of the most of high God that healed my daughter i stand with authority and I decree and I declare your children shall be healed in the mighty name of Jesus!!!!! Amen . Post your email we need to talk.
ReplyDeleteSorry. But how did he hide his status from you? Kindly Educate us singles.
DeleteDear poster sorry about the difficult situation you are in. Please try to find out what cheers you up. My hubby is SS and 40 years old he hardly ever has crisis. I think it’s the age they are at the moment that is making it seem this way. Pleas try to take one day at a time.
ReplyDeleteI will say a prayer for you.
Poster didnt mention her horseband...he don Run??
ReplyDeleteWhy r u interested in the husband? Why not the story
DeleteMc pinky
Pls take heart my dear, it is not an easy Road but God will help you. First stop taking the children from church to church, stress is a trigger for crisis in sickle cell. Try to avoid extreme temperatures ( heat or cold) as this is also a trigger. Keep the children very well hydrated, water therapy helps to keep the blood flowing and prevent the occurrence of the sickle cells clotting. I am a female sicker in my 40's, married with 2 kids and while it has not been an easy road, I want to let you know that sickle cell is not a death warrant. Pls try to join the sickle cell foundation, the head office is in Lagos. There you can relate with other sicklers and parents of sicklers. This will help you keep abreast of new innovations and other things you can do to make life a little easier for you and the children. Talk to your doctor about hydroxyurea, it is a prescription that could help ease the frequency and severity of crisis, note that this must be prescribed and monitored by a doctoras it does not agree with everyone. Tty and ensure the children do not catch any common illnesses such as malaria, typhoid etc and any little illness can trigger a crisis. God will give you strength and your children will bring you joy in the long run.
ReplyDeleteDear poster I cried reading your story. I've not seen it first hand but I've heard lots of stories. It is well, please be strong for your kids. Over here they do the stem cell/bone marrow thing, I'm not sure if it's something known/happening in naija. I will say please stick to medical advise only. Stop all that taking them from one church to the other please, this is a medical condition. taking them to church for a "man of God" to yell out some English words aggressively in the name of "prayers" would not solve it. Please stick to medical advise, prayers don't change genotypes, it's all lies please.
ReplyDeleteshut up aproko...if u want to give advice then give but how dare you say prayers dont change genotype? i you dont know anyone say so...HE HAS CHANGED SS TO AA.....poster keep praying and believe. we know its Gods prerogative to when and who he answers but our part is to believe. you just dont need to take them to vigils for him to hear you...
DeleteMay God give your children good health
ReplyDeleteTake heart darling. May God grant permanent healing to your kids. Be strong!
ReplyDeleteDear Stella and worried Madam, Please, it is just a litle knowledge that changes everything completely.
ReplyDeleteI beg you and anyone who sees this, please let this lady see this my comment.
Tell your children to 1)drink their first urine of the day(they must do this everday!! You must ensure this) .
2)Ensure that they never ever eat any processed food--anything with flour(bread, cake, biscuit, spaghetti,...),they must not take any type of drink besides water, or natural fruit juice that you made yourself by squeezing or blending the fruit(without adding sugar, sweetener or preservative), stop putting maggi, knor and the likes in your food and make sure you do Not give them indomie(i have already said no processed food)
3)Do not give them any type of chicken,turkey, goat or cow meat. Let them eat only fish. And do not cook soup/stew with these and give the children to eat. You can cook in your own separate pot and hide it from the kids.
Please, there is no need in repeating myself, do all of these first and see the improvements. You may not believe it but try. Make sure they take their own urines as i said earlier.
Also, when things get better people often forget to say so, when things get better let us know and also, tell us what you notice as you do these things.
Start with these first and later i might tell you more depending upon the level progress shown.
Madam, make sure your children do not takr anything(gala, cake...) from their friends, explain to them why and do it everyday before and after school.
Try first, do not skip one thing i told you and then say you tried. Get your life and marriage back and better.
God is the greatest and highest.
Are you sure you are okay? Drink urine ke?
Delete@ANON 09.43.. Why are you exposing your ignorance? Haven't you heard of Urine Therapy or urotherapy? Google is your friend-o..
DeleteSdk bv una too much. when it's time for brain reset advice peppered with insults una dey there. Constructive advice nko? una dey. may God's blessings pursue and overtake u all. I don't have much to say.poster God will be your strength. follow all that might work for you.
ReplyDeleteDear Poster, I would advice that if you are in lagos please visit Sickle Cell Foundation at Idi-Araba opposite Luth. Their service are excellent and their prices are affordable. Their sole aim is to provide comfort to those suffering from Sickle cell anemia. cheers.
ReplyDelete