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I’m dedicating this day to my 15years old friend. Today, I want to remind you how strong you are. You’re a Conqueror.
There’s something spectacular about today. I already spoke to her mum this morning. It’s her story, she gave me permission to share it.
She’s going to be reading your comments. So do well to drop encouraging words.
Mrs J was a fresh secondary graduate when she first met her husband. She was 18years. They got married a year after. For her, it was love at first sight. He was her First and last. She said she didn’t understand exactly what Marriage was about, but she was certain it was the right thing for her.
In her words: “I was naive, but not stupid. He was priceless, his love was so sweet to be real, he was forgiving, loving, understanding, trustworthy, kind, caring. He was to me, what I read in books!”
“But what was his job?” I tried to interrupt
“He was a corper then, but now a secondary Teacher”. She said.
We got married and we had seven ( 7) children. 5 boys, 2 girls. She is the last (pointing at her daughter lying down in the bed) and…and…and…
And what? Madam? Are you crying? I understand perfectly whatever it is you’re passing through. Trust me. At this point, I Offered her a white handkerchief and waited for her to be done before we continue.
Deep in my heart, I wished it wasn’t what I was thinking. Could it be this …no, no…no. I rebuked it.
It wasn’t even what I thought. ..it was worse.
Let’s talk about her Daughter…
It was one of those busy school days, I met her in the ward. Beautiful young girl. But mare looking at her was heartbreaking for me.
Hello, how are you?
Something wasn’t right. But I needed to be certain.
“I’m fine. Thank you.” She said
I’m Ola. Can you see me? I asked
“No”. I can’t. I’m. …..B…Blind.
She told me she has been blind for 5years now.
It was so much for me to bear. We are always taught to be empathetic but not sympathetic. I didn’t understand why I felt that way. But I know why…let me tell you. I won’t talk about that now.
The striking thing about her was her Gait. The way she walked when I sighted her earlier that day. And this was the reason I came. I had no idea there was something more….or even worse. No idea she was blind.
“Isn’t this Hemiplegic gait?” I asked my friend. I was confused. This girl is certainly not more than 15years old. Stroke? At this age?? No
This was my first time of seeing a very young Stroke patient. I just felt life was unfair to her. But I still needed to be sure
She could barely walk, so her mother was trying to support her. It wasn’t an appealing sight for me. I could feel the pain in her mother’s eyes, the regrets, the agony. Yet she tried to be strong.
So from this day, she became my friend. I visited her almost every day in the ward, no matter how stressful my day was.
So back to Mrs J. This is my last child and the only surviving child. She burst in tears.
At this point, I lost my cool. I lost my strength. I couldn’t hold it. Tears rolled uncontrollably from my eyes. Holding her hands reassuringly…saying to her, it shall be well with you. You will overcome all these, God knows why all these are happening. We can’t question God, even though I wish we could.
So what killed them and why is your daughter here?” I tried asking…
She is A sickler. The ones that died were all sicklers. She had a stroke 5 years ago and later became Blind. That’s why she’s like this. This little girl has suffered so much because of my ignorance. I wish all this happened to me and not her!
I was speechless. I couldn’t even express how I felt, even this moment I still can’t. Please what is more painful? I’m asking you this because I don’t think I know.
But somehow, I still managed to express myself.
Are your Genotype and your husband’s “AS”? I asked.
“Yes. And we didn’t know till after my third child’s death”. She said
So what happened afterwards I tried to enquire.
Nothing. The Doctor told us. We started giving the other remaining 4 children Folic acid. We tried, and visited hospitals…they gave us options which were too expensive for us. We relied on God for a miracle, which never happened.
So they kept dying and now I’m left with just this one. I’m 42years old, I can still conceive but my husband and I have decided no more, I’m currently on family planning. We can’t continue to bear these pains.
I wish I knew all these before I got married. I wouldn’t have.” She was in pains, lamenting, blaming herself for all these. So I couldn’t let her continue. I already hit the points…
SICKLE CELL ANEMIA
It is an inherited blood disorder in which the red blood cells assume a “Sickled” shape as against their normal Biconcave morphology, this makes them easily prone to destruction and the normal life span of a red blood cell which is 120days is drastically reduced to 10-20days. This is the reason for the Anemia
Morbidity, frequency of crisis, degree of anaemia, and the organ systems involved vary considerably from individual to individual.
For one to be A Sickle cell patient, he must have inherited the defective gene from both parents. So mother and Father must be “AS”
Nature determines which offspring inherits this. For every pregnancy, the chances of having an ‘SS’ is 25%. So it is possible to have all children SS, it is also possible to have all AS or even AA. I’ve seen all these varieties. In some, it is a mixture of these.
Screening for HbS at birth is currently mandatory in some countries like the United States. For the first 6 months of life, infants are protected largely by elevated levels of Fetal Hemoglobin, Hb F. So a child less than 6months will not manifest with features. Sickle cell anaemia usually manifests early in childhood, the condition becomes evident, as follows:
Yellowish discolouration of the eyes (jaundice)
Hand and foot swelling( dactylitis)
Delayed growth, etc
The complications of these are endless. It cuts across all systems in the body.
Poor wound healing
Organ enlargement like Liver, spleen
Recurrent chest infections
Social stigma, Depression,
All the complications from anaemia
However, with adequate care, most live their normal lives with reduced hospital visits. I know a Doctor who is Above 70 and is an SCD patient.
WHEN You hear “PREVENTION IS BETTER THAN CURE”, this is where it’s best applied. It should be prevented by all possible means.
The first step towards that is to know your genotype and that of every member of your family. If you’re “AA”, Lucky you. Lol. Hotcake
But if You’re AS or SS still fine. You just have to always thread with caution. “I Love you, I can’t live without you”, na for person wey never born SS o.
For all “AS & SS”, your first date with anyone you MUST ASK THEIR GENOTYPE. You can only marry an ‘AA’ And it doesn’t end there. Before you consider getting married to anyone, you both must go to a good hospital to confirm your genotypes, at least 2 different hospitals. I’ve heard of partners that lied, just to stay married. What a shame!
It is traumatizing. You can’t even imagine the constant pain your child will be on because of your careless mistake or even losing your children. It destroys homes. Do you see that Love? It will vanish
I’ve seen couples separate because of this. Don’t let anyone deceive you. Truth there is a lot of advancement especially in the Prevention of SS, but it is not readily affordable and available. How many couples can spend millions just to find out if the fetus is “SS” or not; and if “SS”, abort it? Even if the money is there, your Faith may not permit that.
However, if you are a Sickle cell patient or you know one who is, please the Importance of regular medical check-up can never be overemphasised. As soon as they are diagnosed, their hospital visits should be regular. Most complications can be prevented. In addition, the following must be observed in order to prevent Crises:
Good Hydration: The person must stay hydrated at least 3 litres of water every day.
Avoid extreme temperatures. Not so cold, not so hot.
Avoid strenuous activities/stress
Avoid alcohol and cigarettes
Take their routine drugs (Folic acid, Hydroxyurea, antimalaria etc)
Vaccination against Hepatitis B virus(because of the frequent blood transfusion); Pneumococcal Conjugate vaccine because they’re prone to encapsulated organisms.
With these, they can live a normal life, devoid of crises and pains, or at least reduced to its minimum. However, they must “Make their Doctor, their friend”
Today, June 19, is World Sickle Cell Awareness Day. Over 400, O00 babies are born each year with Sickle cell disease. We can help reduce this, by creating awareness.
To all the SCD patients; ” don’t ever let the pains destroy you, grow stronger from the pains”. You shall win this fight.
I am hoping to Raise Money, create awareness and lend my support to Sickle Cell Disease Patients in the nearest future. However, in my own little way…I hope this helps.
I for once have never been close to any albino till I met Amaka’s boyfriend (now Husband).
Amaka was my childhood best friend, and we have been pretty close since then. So a few years back she informed me she was getting married.
“Ola, he proposed, and I said YES!” SHE exclaimed.
See me blushing like ……I couldn’t have been any happier. You know there are friends you have that bring so much peace into your life; that every moment of your prayer you can’t stop praying for them. Amaka is that kind of friend. I always wanted her to be Happy.
Let me Tell you a little story about Amaka.
She lost her parents at the age of 5 through a motor accident. She was the only survivor. She lost not just her parents, her whole family. The 4 of them! Heartbreaking……
Her mother’s youngest sister decided to adopt her as her own child. (God bless this woman). You know growing up with our parents is one Blessing we all take for granted. Honestly you may never understand what it means to be an ORPHAN at a very young age or growing up in another family. Sad.
Nevertheless, as God may have it Her aunt was an Answered Prayer. She took care of her like her own. Unfortunately the woman had no child of her own. So Amaka was all she had.
Amaka is decent, a no nonsense girl,a confidant, an advisor. She is courageous and pretty. In summary, she was a God-sent friend. Jehovah knows how much I needed people like her around.
Amaka moved to Europe in 2011 for her university education. So there she met Kelvin, an Albino based in Abuja, she met on Social media.
Albino? Amaka of all the men in the world it’s an Albino you want? I asked her severally.
So there’s no Nigerian in Europe? No black skinned guy. All you want is an albino? Have you ever imagined how your children will look even they inherit this albinism? If you want to marry an ‘Oyibo’ why not marry a white guy over there…you rather go for a fake one. I always said all these to her.
Look , I loved Amaka and wanted the best for her. I never thought Kelvin was the best man for her. Knowing how much she has kept herself and prayed for a good decent man.
I felt she deserved better.Never have I doubted her sense of judgement. Look, when it comes to a friend that can help you in making important decisions about a life partner, family, etc she was that friend. She is filled with wisdom. The surrounding aura is honorable. She has a way of talking directly to my soul. I’m few months older than she is, but I respect her a lot.
So a part of me felt this maybe the best thing for her. She knows exactly what she wants.
So one fateful morning she called to inform me Kelvin was coming to Owerri, Imo state for a conference. So we could catch up if I don’t mind.
Me and Kelvin? What for biko? The fact he is an albino made me hate him for no just reason. I was stupid. Like I said earlier, she knows how exactly how to penetrate into subconscious, so as expected I accepted.
Fast-forward to a few days later. He was in town and we met. Damn!!! This guy was nearly Perfect.
Soft spoken, his charisma is out of this world, contagious smile, fluent, humble. Why did God make him an albino (I thought to myself)
We were supposed to meet by 1 pm. It was a hot afternoon, so he called and pleaded we make it 3.30 pm. I already knew why. You will understand the reason, soon.
He wore a Long-sleeved White T-shirt, a hat , and sunshade.
Wow! This dude knows his onions. No wonder my friend fell for him, I muffled. I will come back to this later
Right now they’re happily married with two kids. A daughter who is an albino, and a son who isn’t.
Albinism consists of a group of inherited abnormalities of melanin synthesis and are typically characterized by a congenital reduction or absence of melanin pigment. Albinism results from defective production of melanin from……..I’m not going into this now, it’s beyond the scope of this blog, lol. Just know melanin is the black colouring pigment of the skin. So in albinos, it’s synthesis is defective.
It is more common in Blacks
It can manifest as Oculocutaneous (affecting both the eyes and skin) or Ocular alone (affecting just the eyes) with the hair and skin colour normal.
The features of albinism include:
Sensitivity to light
Ocular (eye) manifestations like:
1. Refractive error and astigmatism
2. Nystagmus (may compensate with a head tilt that may help improve vision)
3. Iris depigmentation (usually blue-gray or light brown color)
4. Strabismus (the so-called four O’clock eyes)
Complications/challenges of being an albino:
Skin cancer, sunburn.
Reduced visual acuity
The commonest cancer they have is Cancer of the skin. The good thing about this cancer is that it can be highly prevented. So I expect everyone one if us reading this to tell all albinos you know about what you’re about reading now.
The big question is How Cancer of the skin be prevented In this subset of people?
Remember what I told you about Kelvin. The way he dressed…the long sleeves, hat, the time rescheduled our meeting for 3.30pm all these were for a reason and I’m going to explain all that to you.
First… Avoid SUN!
They should ALWAYS WEAR LONG SLEEVES
A Wide range Hat
Wear sun absorbing colours like White, Red,etc
And try as much as possible to avoid Sun. And if they must go under the sun before 11am and 3pm they should USE AN UMBRELLA . All these must start as soon as the child is born.
Indoor activities are encouraged like office jobs. No outdoor activities as much as possible
SPF ! SPF !! SPF!!!
SPF means Sun Protective Factor
They should always, I repeat always apply it every day before stepping out of the house. It has different ranges, the appropriate ones for them are those above 30. So it comes in SPF_10,15,20,30,70,22, ETC. ANYONE ABOVE 30 IS OK . It is readily Available in supermarkets. You don’t even have to be an albino to use this ,I use it everyday. It protects us from the damaging effects of the sun. So the chances of having skin burn and skin cancers are reduced. A few body creams and lotions contain it too, so they should patronize such products. More interestingly it’s now embedded in some clothes. Yes,you read right. We now have SPF in clothes. They should wear such.
Regular medical check up
They should always go for regular medical check up. The importance of Early detection and prevention can never be over emphasized. When detected early this cancer can be “cured”. They also need to be seen by an Ophthalmologist because the majority have a poor vision.
Ladies and Gentlemen Today, the 13th of June is World Albinism Awareness day.
International Albinism Awareness Day is observed this day, June 13th every year. Its main aim is to support albino patients and discrimination against people with albinism, particularly in Africa.
Let’s spread the word. They are no less of a human. Until you treat people as your equal, you have no right to complain about the treatment you receive from anyone. The myths about their being mentally retarded is absolutely false, they are not. Kelvin is a first class Engineer. I’ve a Doctor friend who is an albino that I met a few months ago. I could go on and on.
All they may need is the right information. Once you see any albino, tell him/her this. The albinos you hate are the ones not well taken care of, if you see an albino that understands his condition and knows exactly how to prevent complications…you will be as Amazed as I was when I first met Kelvin.
Albinos may be affected by sun, however the socail stigma is more worrisome to them.
Nurturing yourself is not selfish – it’s essential to your survival and your well-being.”
Women are so celebrated and somehow the men are almost always left out…..
Well, let me tell you a little about My Friend… Mr. X. Meeting him wasn’t just a coincidence, it was an eye-opener for me. It made me realize how much men are ignored in the society especially Healthwise. Well, I’m not laying the blame on the society per se but The MEN THEMSELVES. IRONICALLY…
Back to him I met him in Abuja last year. He’s a 37-year-old hunky, dishy, hot, drop-dead gorgeous guy who is also well to do.
What exactly is this gist about…I know what’s going through your mind. Chill. Lol
So we met at a friend’s wedding. He was the best man. I was just a guest who interestingly picked the bouquet. Hehehehe. So as usual the MC officially wed us. Hahahaha That was the beginning of our friendship.
So we got talking not so often though. Chatting was a better means for us even though this too wasn’t frequent. I got to know he is an Engineer who works with one of the largest Oil companies in Port-Harcourt. Not married. Both parents are alive. He’s also into business, so he is just so much of a busy man.
While we were chatting one fateful night he informed me he was having serious headache, palpitations and feels dizzy. So I figured out he may be stressed out.I encouraged him to have enough sleep and if it continued, he should see his doctor first thing in the morning.
This brings me to my main reason for this discussion. Honestly, you won’t believe his response. You know our men are so concerned with the women in their lives that they nearly almost always forget to care for themselves. They go about thinking they’re too strong. Powerful and immunity covers them. Well…let’s see.
“Doctor?” He asked “Yes of course” I replied
“Hmmmmmmmm. I don’t have a Doctor o. Neither have I ever visited a hospital.” He said.
What? For me that was strange
Ok. He was 37 years. So you mean a 37-year-old full-blooded man has never visited a hospital? 37 years on earth?? Wow! “So what do you do when you fall sick? Don’t you go to the hospital for a routine check-up? What exactly do you do concerning your health?” I tried to ask so many questions at the same time because I couldn’t comprehend the fact that a 37-year-old had never been to a hospital. What!!!?
It was at this point it dawned on me that Hypertension could also be a possible cause of his symptoms. However, there was not enough reason to say that. But for the avoidance of doubt, I asked “When last did you check your blood pressure?”
“Hmm… some months ago.” He said. And it was 180/…..he tried to recall but wasn’t sure of the diastolic pressure.
180??? So what have you done about it? I asked curiously having in mind he has never visited a Doctor as he said.
Nothing. I’ve checked it severally it’s always within that range but I figured out it’s due to the nature of my job. He replied. Do you know what got me upset? This is someone that loves his girlfriend so much that when she complained of slight abdominal pain. He called me and was fidgeting. For abdominal pain o. Yet his own life, he took for granted.
Yeah shocked right? I know. He is not my boyfriend tatafooooo. Amaigbo wie not kie you. Hahahahahahahahahhaahahahhahaha
I was flabbergasted. I couldn’t just believe He wasn’t joking. How could someone take pride in Ignorance? Are you a Doctor? Even if you’re are you to treat yourself? How could someone vomit such venom with so much alacrity? Well, these were the things that went through my mind, but of course, I remained calm.
“Ok. Please tomorrow first thing in the morning go to a hospital. See a Doctor. Tell him exactly how you feel and let him have you examined and your Blood pressure checked.” I told him I was a bit persuasive so he was forced to accept.
To cut the long story short… His blood pressure was 200/100mmHg.
Do you know what this means? 200? And he has been walking around. The complications of Hypertension are endless and it doesn’t matter how strong you think you’re. If a stroke hits you, you will realize how hard life can be. It is better prevented, always remember this.
Currently, he’s on drugs, very adherent to his drugs, and has been so grateful to me.
What is HYPERTENSION
It is when the blood pressure is above 140/90mmhg in an adult.
It is the one of the commonest non-communicable diseases in Nigeria.
It has a lot of causes 95% of these are * INCURABLE*. It could be genetic or acquired Some of the risk factors include:
Symptoms Virtually none. And it can go unnoticed for years until complications begin to manifest. This is why it’s called a Silent killer
This is the reason why every adult should regularly go for medical check up. Infact we all should have our blood pressure checked irrespective of age and sex.
Once your blood pressure is under control you have almost nothing to worry about.
Some of the complications include:
Myocardial infarction (heart attack and sudden death)
Peripheral vascular diseases
In fact, the list is endless. And the complications are IRREVERSIBLE.
Would you rather have a stroke or have your blood pressure under control? The choice is yours.
Nurturing yourself is not selfish – it’s essential to your survival and your well-being.”
THERE’S NO EXCUSE. Just virtually anyone can be Hypertensive.
So dear men, take care of yourself. It’s the only place you have to Love. We care so much about you.
The purpose of Men’s Health week is to heighten the awareness of preventable health problems and encourage early detection and treatment of disease among men and boys. This month gives health care providers, public policy makers, the media, and individuals an opportunity to encourage men and boys to seek regular medical advice and early treatment for disease and injury. The response has been overwhelmin
The beauty of life is,while we can not undo what’s done,we can see it, understand it, learn from it, and change, so that every moment is spent, not in regret, guilt, fear or anger but In wisdom, understanding and Love Jennifer Edwards
Adaku’s death Who is to be blamed? The patient, doctor or Government? This is a very sad story. Typing right now… it’s still so difficult for me because I know how much this girl wanted to live, she fought, she prayed relentlessly, perhaps it was too late.
How did we meet?
I met her about four years ago on Instagram after I commented on a post (I think about a celebrity who died from Kidney Failure and I saw a comment where he was blamed for his death as a result of alcoholism. I tried to acknowledge the fact that while alcohol may be the cause of the failure, alcohol isn’t the only cause of kidney failure, and then went ahead to list other possible causes. She was among those who ‘liked’ my comment, then ‘followed’ me. Without any form of formal or informal greeting or introduction she curiously asked: “ARE YOU A DOCTOR”? I tried to be nice (if you know me, you will obviously know I’m not always that nice, lol). So I replied “GOOD MORNING. NOPE, BUT A MEDICAL STUDENT.
Adaku: Ok. Good morning. But do you know about Polycystic kidney disease?
Somehow I could read this anxiety in her from the way she chatted. So I tried to calm her down.
‘Yes dear’ I replied. Any problem? Then at this point, she was typing endlessly……… I got tired of waiting and used the time to scroll through her profile. All I saw was a beautiful, about 5.9 or 6ft tall girl likely in her early or mid-twenties. Chocolate skinned, long hair, with a beautiful smile… In fact, she was stunning! Then I noticed her frequent posts about JESUS, GOD, MARY. She was a catholic…a devout at that, however, it was too early for me to conclude. Finally, the long-awaited chat dropped…..it was a long one. I read it and couldn’t believe what I just read.
Summary : Her mother died of chronic kidney failure. She wasn’t probably informed of her condition on time. She battled with it for years in a private hospital in Lagos where she was diagnosed of kidney problem, however, she claimed her mum was not told the cause of her failure until they went to another hospital a few years after and there they found out her mother had a POLY CYSTIC KIDNEY DISEASE. And this was the cause of her renal failure and eventual death. It was indeed a piece of bad news. I felt so sorry for her. Tried to console her and encouraged her to be strong. That was the beginning of our friendship.
But little did I know there was something more………. We exchanged contacts. She informed me she was 29years old. A graduate of Mass communication. Devout Christian. She was unemployed and single.
“Less than four weeks she revealed to me she had this constant pain in her flanks which has been on for more than 9years now. She has been taking ‘PAINKILLERS” FOR YEARS.”
Hmmmmmmmm I was dumbfounded. Then I didn’t have much knowledge on PKD but I was certain there was something wrong somewhere. So I simply pleaded with her to please go to any good hospital in Lagos, a tertiary one preferably.
Father was sick, her only Brother was in India still trying to make ends meet. I encouraged her to call her brother and anyone she Could for assistance and I offered to assist any little way I could.
Ok. To cut this long story short…..she was also diagnosed with KIDNEY FAILURE.
This girl was barely 29 years. She had same condition her mum had. She had cysts in her kidneys which damaged them.
This should have been prevented……yes. The hospitals her mother visited didn’t do enough. It was already too late. This is unfair. She died last year, in the month of June.
She was never supposed to even be on painkillers. It worsened her condition. If she was employed she would have had access to a good hospital a long time ago. I think everyone should be blamed especially the hospitals her mother visited. What do you think?
WHAT IS ADPKD?
ADPKD (Autosomal Polycystic Kidney Disease) or simply Polycystic Kidney disease is the most common inherited kidney disease worldwide. (This explains why she inherited it from her mother) In this condition, multiple, continuously expanding cysts (looking like fluid-containing balloons of different sizes) gradually destroy both kidneys structurally.
The kidneys also appear to be 2 to 5 times bigger than normal. It is also associated with cysts in other organs of the body like the liver, pancreas, as well as dilatation (or abnormal expansion) of blood vessels in the brain (which can lead to bleeding strokes) and, heart abnormalities. Most who suffer from polycystic kidneys usually have a parent or direct relative who may have suffered from a similar kidney disease. However, the severity of the disease may differ among family members due to many factors (hers was worse than her mom’s because she was on painkillers) Most times, patients may live a normal life until they are between the ages of 20 to 30years when they begin to manifest symptoms of the disease. These include: Pain in the flanks passage of bloody urine Hypertension ( I forgot to mention Adaku was hypertensive but she never took it seriously. She once measured her Blood pressure and it was 170/100mmhg. Therefore, what can you do if you have a family history of kidney disease?
Talk to your family physician who will assess you, have you check your blood pressure and, send you for screening tests.
ADPKD can easily be diagnosed with an abdominal ultra-sound scan. A scan will also assess your liver and pancreas for presence of cysts too.
Other tests are a urine test for presence of blood, blood tests for kidney function and a heart and brain scan.
Genetic testing for genes for the disease can be identified in individuals If a patient already has symptoms of a kidney disease, a good clinical assessment to determine the extent of damage will also be carried out. These will include tests already mentioned including some more complicated ones depending on available facilities. Usually, a patient will be referred to a kidney specialist (nephrologist) for further management. Patient management: This comprises several stages or levels of intervention depending on the presentation and severity. These will include blood pressure control, prompt infection control, medical treatment to control cyst enlargement, aspiration of large cysts, laparoscopic surgery to remove large cysts, total removal of one kidney, hemodialysis and kidney transplant. An expert (nephrologist) can only take decisions on the appropriate interventional treatment. It is important to note that smoking, excessive alcohol intake, use of herbal medications injurious to the kidney, use of certain drugs like NSAIDs painkillers (e.g. Ibuprofen, diclofenac, aspirin) or such antibiotics like gentamycin in the presence of ADPKD can rapidly worsen the kidney function of a patient. Life outcomes are better now when patients are diagnosed early, with expert management and patient cooperation.
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Disclaimer: name, dates, or any other identifying details of my friend in this story were changed to protect her privacy