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How Can You Live Well With Sickle Cell Disease?



How to live well with SCD

As a Sickle Cell Disease (SCD) patient, you can still live a full, active life. It’s all about making smart health choices that help to keep your condition better and prevent  a pain or sickle crisis. Though you won’t have full control over the way SCD affects your body, the good news is that you can choose a lifestyle that manages pain and limits SCD underlying complications.

Before we explore how to live well with SCD, note that SCD varies widely from person to person. Also, the intensity of pain could range from moderate to severe! Relief methods can also differ. Check out a few guidelines you should follow:

Discuss with your doctor

Keep your doctor abreast about your symptoms and find the right way to relieve your pain. The relief method may be medicine, natural remedies or others such as heating pads or physical therapy or a combination of several remedies. Ensure that you are being followed up by a hematologist.

 For me, combining natural remedies with my doctors treatment has had the best results. I haven’t had a sickle crisis in eight years since I took charge of my health and added natural therapies to my daily routine. Not only am I more energetic and pain free but I’ve greatly reduced the amount of medications I take which is so good for my liver and kidneys. The less medicines I take, the less toxins in my body and the lesser the side effects from medicines.

Take pain medicines with caution

Talk with your healthcare provider about the right over-the-counter drugs that work for you.  Be aware that medications like ibuprofen (Advil, Motrin) or naproxen sodium (Aleve) may be bad for your kidneys. I have almost completely weaned myself from pain medicines. Rather I take evenflo every hour to manage pain when I am unwell. I add turmeric, ginger and cayenne pepper to the juice or teas I take daily as they have great anti inflammatory properties and help reduce pain even arthritic or sciatic nerve pain.

Look for pain triggers

If sudden pain strikes you, find out the cause. Making a long list of possible causes overtime can help you figure out a link. I keep a daily journal of my activities. This helps me quickly figure out what I didn’t do right that could have triggered a crisis situation. It could be extreme fatigue, stress, over exertion, sleep deprivation, exposure to extreme weather conditions, poor hydration etc. It could be anything really that’s why it’s good to document daily activities to make it easier to know your triggers. It’s by keeping a dairy that I learned that swimming in gold pools, drinking alcohol and having periods triggered crisis for me.

Get an annual checkup

Annual checkup is a great way for a doctor to help you coordinate your health condition using different specialists or methods. This helps you follow up with any symptoms. Through annual checkups my vision has been preserved. Fifties hound that sickle dell blocks the blood vessels st the back of my eyes which could lead to blindness. Now I have laser surgery about once a year to preserve my vision.

Prevent infections

It is fundamental to prevent infections since they can cause more SCD complications. So it is important to get all of the vaccines your doctor or nurse recommends. I take two c lives of garlic daily to help prevent infections. Other natural antibiotics I’ve used and found effective include ; oregano, echinacea, golden seal, and olive leaf extract.

Helpful things to do

Here are several things you can do or precautions you can take to manage your life and stay as healthy as possible.

Drink plenty of fluids

Hydrating your body with fluids every time and particularly during hot weather improves your health. A dehydrated body has a higher risk of a sickle cell crisis. I take soups, teas, home made vegetable and fruit  juices, broths, and coconut water in addition to plain water to help me meet my goal of taking at least two litres of fluids daily.

Avoid extreme temperatures

Ensure that your dressing matches appropriately with the weather. Keep away from sudden temperature changes like swimming in cold water.

Watch out when at high altitudes for inadequate oxygen supply as it may trigger a crisis. However, the good thing is planes are pressurised to maintain a steady level of oxygen. I take chlorophyll every few hours when I’m in the plane as well as liquid oxygen I drop in water to help oxygenate my cells.

Avoid very strenuous exercise

As a sickle cell disease patient, be active, but avoid intense activities because being short of breath could very easily lead to a crisis. So fo low to moderate intensity exercise, and hydrate, hydrate, hydrate while exercising. As with everything else in life, consistency is key.

Avoid alcohol and smoking

Quit drinking alcohol as it can lead to dehydration. Avoid smoking as it can result in an acute chest syndrome (severe lung condition)

Be relaxed

Stress is one of the triggers of a sickle cell crisis. So, learn relaxation techniques like breathing exercises. Seek advice on ways to avoid triggers from your healthcare team.

It is a great idea to be prepared to treat painful episodes at home. Having a healthy lifestyle and being fully informed about SCD is key. This includes a balanced diet, moderate exercise, closeness to your doctor and a ready supply of painkillers like paracetamol or ibuprofen and some heated pads to soothe the pain. Some of the things I do to relax include; using essential oils and diffusers-Lavender rubbed under my feet and chest or running it in a diffuser does wonders for me, taking chamomile tea or a blend of teas fur relaxation, taking Epsom sait baths, using magnesium salt sprays before bed, listening to relaxation music, praying, meditating on the word of God, going for walks, going to the movies, reading a book, drawing or painting, etc whatever relaxation technique works for you, make sure to incorporate it in your daily  wellness plan.

 How do you live well with sickle cell? What steps do you take to manage your health? Please share with me

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