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Tito Oye started the topic Working From Home and Sickle Cell in the forum Adults With Sickle Cell Disease 1 month, 2 weeks ago
I work in marketing and thankfully I am able to work from home. This is something that has helped greatly when it comes to managing my health as I have better control over my environment and the triggers I am exposed to.
Do you work from home? If so, what differences have you made to make your home working environment more suitable for your…[Read more]
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Tito Oye replied to the topic Sickle Cell Crisis Pet Peeves in the forum Adults With Sickle Cell Disease 1 month, 2 weeks ago
I could list 100 things, but the first thing that came to mind is the stage where you’ve started to recover from a crisis but you’re not 100% better…maybe only 60%, and that stage of recovery can last forever. It’s very frustrating in my opinion.
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Tito Oye replied to the topic Darker & Shorter Days: How Are You Coping? in the forum Motivational Mondays 2 months, 1 week ago
I find that during these months my energy levels are more depleted, like as soon as the sky gets dark my body starts getting ready to rest. I think that especially during these times to find a balance between what your body wants and what you needs is essential, but definitely easier said than done.
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Tito Oye replied to the topic Looking Forward to Breakthroughs in Sickle Cell Research in the forum Clinical Trials 2 months, 1 week ago
Oooh I’m looking forward to the same thing too @michael-quadri!
This year I am also trying to make better and healthier decisions when it comes to my lifestyle and I’m also looking forward to seeing a positive difference caused by this. -
Tito Oye replied to the topic Go To Distractions From Sickle Cell in the forum Adults With Sickle Cell Disease 2 months, 1 week ago
Yes @virus, unfortunately there are times when the pain is so intense that no distraction is strong enough, and in those cases, sleep is the best option for me.
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Tito Oye started the topic Go To Distractions From Sickle Cell in the forum Adults With Sickle Cell Disease 2 months, 1 week ago
Whenever I feel a crisis starting, in addition to using my painkillers, making sure I am well-hydrated and keeping warm, I make an effort to distract myself.
I’m not sure how it works exactly, but distractions have often helped me take my mind off the pain and make the situation a lot more bearable.
My favorite distraction is laughter, wh…[Read more]
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Tito Oye replied to the topic Carers Support During a Sickle Cell Crisis in the forum Parents and Caregivers 2 months, 2 weeks ago
It’s good that @jordangirl & @enorris have things that work for you and people that can support when needed. I think when I am going through crisis what helps is when people already understand what I need, it saves me having to explain and it allows me to focus on getting better as quickly as possible.
@jordangirl what are mineral drips and what…[Read more]
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Tito Oye replied to the topic Carers Support During a Sickle Cell Crisis in the forum Parents and Caregivers 2 months, 2 weeks ago
It’s good that @jordangirl & @enorris have things that work for you and people that can support when needed. I think when I am going through crisis what helps is when people already understand what I need, it saves me having to explain and it allows me to focus on getting better as quickly as possible.
@jordangirl what are mineral drips and what…[Read more]
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Tito Oye replied to the topic Maintaining Good Health in the forum Sickle Cell Disease Awareness 2 months, 2 weeks ago
I am trying this year to be way more consistent with my eating schedule. I tend to miss breakfast also and eat much later than I should in all honesty. @virus similar to you, I’d like to get more sleep during the week as I also get fatigued.
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Tito Oye replied to the topic Useful Items to Help with the Cold? in the forum Adults With Sickle Cell Disease 2 months, 2 weeks ago
My best friend is definitely my hot water bottle. When I start to feel cold I grab my hot water bottle like I am preparing to go to war 😀
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Tito Oye started the topic New Year Resolutions in the forum Adults With Sickle Cell Disease 2 months, 2 weeks ago
Happy New Year everyone!!!
I’m hoping that this year will be a great one for us all.
I would love to know what your health-related new year resolutions are.
For me, this year I am aiming to become more consistent when it comes to taking my vitamins and increasing the amount of veg I consume in my diet
I’m hoping that by the end of the…[Read more]
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Tito Oye replied to the topic Making Hospitalizations More Comfortable in the forum Adults With Sickle Cell Disease 3 months, 2 weeks ago
@virus Those are very essential items!!!
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Tito Oye replied to the topic Carers Support During a Sickle Cell Crisis in the forum Parents and Caregivers 3 months, 2 weeks ago
@viviane141 I think having an advocate is priceless, especially during the times when you’re not strong enough to fight for yourself.
I also feel very touched when I see people advocating on my behalf, even when they don’t completely understand what it is we go through. The fact that they try really warms my heart.
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Tito Oye replied to the topic Carers Support During a Sickle Cell Crisis in the forum Parents and Caregivers 3 months, 2 weeks ago
I agree @virus, if I need medication, please do what you can to help me get it, don’t be another obstacle!
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Tito Oye started the topic Making Hospitalizations More Comfortable in the forum Adults With Sickle Cell Disease 3 months, 4 weeks ago
Going to the hospital is never an enjoyable experience, and 9 times out of 10 I would rather opt for trying to manage my pain at home.
On the occasions when I go to the hospital, I do what I can to make myself as comfortable as possible. This is through a range of things such as the clothing I wear and the items I take with me, i.e. my hot…[Read more]
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Tito Oye replied to the topic Learn Something New in the forum Motivational Mondays 4 months ago
I’ve recently started to learn how to drive which had been a challenge, to say the least! I definitely feel outside my comfort zone!!
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Tito Oye replied to the topic Traveling with Sickle Cell in the forum Diagnosis Information and General Questions 4 months ago
Now that it is getting to the winter months, those of us with sickle cell have to be even more careful when it comes to travelling, especially by air.
One thing I do to ensure I am warm on a flight is to take an empty hot water bottle in my bag. I then ask a staff member to help fill it up.
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Tito Oye replied to the topic SC Triggers/Winter is coming! in the forum Adults With Sickle Cell Disease 4 months ago
The cold is something that I am very weary of and the cold is often a trigger for my sickle cell crises. Because of this, I have started to minimise the number of times I leave my house after a certain time of day unless it is essential.
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Tito Oye started the topic Knowledge of sickle cell? in the forum Adults With Sickle Cell Disease 4 months ago
At what age did you start to understand your diagnosis of sickle cell?
My first real explanation came from my year 5 teacher when I was 10 years old. She explained to me the importance of keeping warm and avoiding my triggers, she also explained to me what happens if I don’t look after myself and have a crisis.
It was a very s…[Read more]
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Tito Oye started the topic Sickle Cell Panel Discussions in the forum Adults With Sickle Cell Disease 4 months, 1 week ago
I recently took part in a panel discussion about sickle cell that was hosted by TikTok. It is always great speaking to other people with sickle cell about our experiences while educating those who are there to listen.
Have you been to any sickle cell events, talks or webinars? What was your experience?
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