How to Find the Right Doctor When Living With KLS

How to Find the Right Doctor When Living With KLS

Every KLS case is similar yet so different. What may help one person, may not work for another. The brain is so complex not every person’s reaction to a treatment is going to be the same. You may need to experiment with different medications and dosages to help you with your symptoms. That is why it is so important to find a good, compassionate doctor who is right for you. Finding the right doctor needs to be a top priority. Once you find the right doctor that is willing to work with you, your quality of life may improve, your health care will improve, you will feel safe sharing information, and you will know that your doctor cares about you. Finding the right doctor for KLS is not going to be easy. It will take effort and patience. A good way to begin your search is to use information from your current doctor’s experience. If you are seeing a doctor at the moment and are unhappy with the care you are receiving, ask yourself these questions. 1) What do I like about my doctor? 2) What don’t I like about my doctor? 3) What type of environment do I want? Writing down your likes and dislikes will provide you with a good list of what you want in a doctor.

How to Find the Right Doctor When Living With KLS

How to Find the Right Doctor When Living With KLS

Because KLS is rare, it may be difficult to find a doctor who knows about KLS. A good starting point is going to the KLS Foundation website and looking at the Doctors Familiar with KLS page to see if there is a doctor in your area familiar with the disorder. Here is the link: http://klsfoundation.org/doctors-familiar-with-kls/

If there is no one on the doctor’s list in your area, try calling one of the doctors closest to your area from the KLS Foundation’s list and ask for a doctor’s recommendation in your area. Or you could ask if that doctor would be willing to see the KLSer. You could search for a Sleep Specialist or a Neurologist in your area. Many Neurologists and Sleep Specialists are interested in rare conditions and would love the opportunity to work with you. Another suggestion is to ask for referrals in the KLS support groups. You can join the KLS Support group by clicking here: KLS Foundation Facebook Support Group. There may be a KLSer in your area who will know of a doctor familiar with KLS.

Doctors see many patients throughout the day, so you need to be prepared and ready for your appointment. When scheduling your appointment to see a doctor, ask how many minutes your appointment will be. Try to schedule enough minutes to get through all your concerns. Be prepared with a list of questions you want answered. An example might be, “What medication can relieve this symptom?” Be prepared to write down important points. Ask the doctor to write down any treatments, symptoms, medications, etc. you may want to research for yourself so that you can decide if that is the approach you would like to take. Having someone with you at your appointment is very important. That person will be your second set of ears and will be able to catch things you may have missed. Remember-you are the expert on KLS. You know your symptoms, your body, and your experiences. The doctor knows treatments. After you decide on a treatment together with your doctor, be sure to evaluate how that treatment is working. Stay on top of your medical decisions and be proactive in your care.

I hope you found this post helpful! If you did, please leave a comment below. I love hearing from you!

With Love,

Alanna

P.S. If you haven’t purchased the Kleine-Levin Syndrome (KLS) Guidebook, you can do so here: http://alannawonglife.com/shop/klsguidebook/ 

Read Disclaimer here: http://alannawonglife.com/disclaimer/

7 Tips to help with sensitivity to light and noise

tips7 Tips to help with sensitivity to light and noise

There are many chronic conditions in this world. In a recent centers for disease control and prevention article, they stated that “As of 2012, about half of all adults—117 million people—have one or more chronic health conditions. One of four adults has two or more chronic health conditions.” You can read the full article here: http://www.cdc.gov/chronicdisease/overview/ I know that my condition comes with sensitivity to noise and light. I’ve also heard of other chronic conditions experiencing symptoms of sensitivity to noise and light too. I want to share with you some tips that I have found to be helpful coping with these symptoms.

Watch TV and movies with subtitles if you are sensitive to noise. When I was ultra-sensitive to noise, my caregiver (my mom) would set the TV to where she would watch it with subtitles. That helped keep my brain quiet and she was still able to watch TV. It’s important to keep your mind calm and quiet when dealing with sensitivities to noise.

Identify your triggers. You may only be bothered by certain noises, so it’s important to know your triggers. Whether its programs with suspenseful music or big crowds of people, you will need to know what noises bother you so you can limit them. Do your best to limit and avoid the types of noises that are triggers.

When going outside, where sunglasses. If you are sensitive to the light, it is critical to protect your eyes by wearing sunglasses. I am giving away a free pair of black polarized Bamboo Hybrid Sunglasses. You can enter to win them here: Polarized Sunglass Giveaway – 2 Winners and here: Brand Name Sunglasses/Prescription Glasses Giveaway – 8 Winners! 

Keep your cell phone on vibrate. Instead of having a ringer, you can put your cell phone on vibrate. This will help limit the noise.

Draw the curtains. During the day, the sun can get very bright in some homes. If it gets bright and you are sensitive to light, it’s helpful to draw the curtains so that you do not have a sun glare.

Be honest. If your symptoms are acting up and you are with others, it’s best to be honest. Explaining your situation will most likely be of benefit to you because the people around you can be more sensitive and understanding. People may not understand you facial reactions to the stimulation around you. Just being in the sunlight can cause my eyes to tear.

Don’t have multiple things on at once. When you are home by yourself, or in the car, you have complete control over the noises, so be sure to limit them. Don’t have the TV and music on at the same time. Limit your noise. Focus on one thing at a time instead of having multiple noises and devices on. It will lead to a more peaceful and quiet environment.

I hope you enjoyed this post! Comment below with any other tips you have if you are sensitive to noise and light! And be sure to enter to win a pair of sunglasses here: Polarized Sunglass Giveaway – 2 Winners and here: Brand Name Sunglasses/Prescription Glasses Giveaway – 8 Winners! 

With Love,

Alanna Wong

5 Reasons Why You Should Track Your Progress When Living With Chronic Illness

Track Your Progress

Track Your Progress

5 Reasons Why You Should Track Your Progress When Living With Chronic Illness

It is so important to track your progress and milestones when living with a chronic illness. Whether you decide to track your treatment plan, health, fitness, emotional well-being, food intake, etc., tracking your progress will be beneficial to you and your health. Below I share with you 5 reasons why tracking your progress is so important! I also have a surprise for you in this article so be sure to read the whole article!

Tracking your progress will let you know if your plan is working for you. This will help you be able to tell over time if something is helping you in your health or making things worse. If your plan is not working, you will be able to make changes. You want to know if something is helping you or making you worse and the only way to know is to track it.

Tracking your progress shows you how far you have come since tracking your first goal. Seeing your progress and how far you have come since setting a goal gives you an instant boost of confidence!

Tracking your progress helps you stay focused on the positives instead of negatives. It is very common to forget your milestones if you do not keep track of them. Keeping a log of your progress will help you reach your milestones. Tracking your progress will show you what you have accomplished so far! Seeing what you have accomplished will make you feel good about your progress! Misfit is a great way to help you stay focused on your health and fitness goals. I am giving away a free Misfit tracker to help you keep track of your goals. You can enter the contest here: http://woobox.com/z67oms

Tracking your progress tells you what is helping you the most. When you track your progress you are able to know what is helping you most and what isn’t. You can then eliminate what isn’t helping and stick with what is helping you.

Tracking your progress keeps you motivated. Tracking your progress keeps you motivated to keep going! When you see your successes, it makes you want to work that much harder to attain your next milestone!

I hope you enjoyed this post! Please comment below to let me know you were here! If you would like a personal activity and sleep monitor that is stylish, enter here: http://woobox.com/z67oms

With Love,

Alanna Wong

 

 

Kleine Levin Syndrome (KLS) Poem

Kleine Levin Syndrome (KLS) Poem

Kleine Levin Syndrome (KLS) Poem

Kleine Levin Syndrome (KLS) Poem

I used to wonder Why Me? Why God? Why did this happen? What did I do to deserve Kleine Levin Syndrome (KLS)? But as the years have passed, I want you to know that I have finally understood this: Why not me? This poem was written during a time of extreme struggle!

 Why God?

Will I ever know?

Can you understand?

I’m too young, too young, too young

To lay in bed and lose my mind;

And watch the world pass me by.

Is there peace on earth or peace of mind?

I’m only a child, God, why can’t they be kind?

I know you conceived me to be perfect.

It is not your fault my brain got sick;

But can’t they help me soothe my pain?

Instead of blame me, judge me all in vain.

For if they really saw the truth,

They would recoil in shame.

I am your child worthy of love,

I forgive the cruelties I’ve had to bear.

I ask for healing, health, and wealth

So I may help and inspire those to follow.

Despite the pain and suffering endured too long,

I will continue to be strong.

 

I hope you enjoyed this post! If you did enjoy it, please share it with your friends and leave a comment below! I love hearing from you!

All the best,

Alanna Wong

p.s. If you haven’t read the introductory section of my book about my 13 year battle with Kleine-Levin Syndrome, you can read it here: http://alannawonglife.com/real-life-sleeping-beauty/

“Imagine” by: Alanna Wong

Imagine

Imagine

“Imagine” by: Alanna Wong

Imagine if we never left a fallen family member behind.

Imagine if we see someone where they are in the exact moment and not where we expect them to be.

Imagine if we show others compassion by putting ourselves in their shoes.

Imagine if we love each other unconditionally and not just show our love when it’s convenient for us.

Imagine if we forgive ourselves for our wrongdoings and we forgive the people that have hurt us.

Imagine if we accepted all ailments in this world even if it’s an illness we can’t see.

Imagine if we just did one of these things how much better the world would be!=

You belong! Let’s start with acceptance!

Share this video with your friends and family members if you or someone you know needs acceptance! 

I hope you enjoyed this post! If you did enjoy it, please leave a comment below! I love hearing from you!

All the best,

Alanna Wong

p.s. If you haven’t read the introductory section of my book about my 13 year battle with Kleine-Levin Syndrome, you can read it here: http://alannawonglife.com/real-life-sleeping-beauty/ 

 

Value Your Loved Ones

Value Your Loved Ones

Value Your Loved Ones

Value Your Loved Ones: 

Have you ever asked yourself why you should value your loved ones? There are many reasons to be given, but I would like to share the most important, and especially, why you also need to be there for them when they need you the most.

Life is a journey of ups and downs. Therefore, it’s completely normal for your loved ones to have you as someone they can count on when the going gets tough. This is a good time for you to show what a good friend you are, as it would hurt them to see you turn your back when they need you. A good way to show that you value them is by staying close and helping them out. It can be challenging for you to stay committed and not walk out, but it also would break them apart to see you turn your back; therefore, you shouldn’t just walk away.

They need you to keep believing. I recently read a quote that says: “We live in a society where too many people make family a disposable commodity”, and I think the quote couldn’t be any truer in today’s society. Unfortunately many people with life struggles are being left behind and not supported in the way they need to and should be. You really must be there when it’s important because it shows you value them.  [Read more…]

Six Steps to Build your Self-Esteem and Confidence

Believe In You!

Believe In You!

Six Steps to Build your Self Esteem and Confidence

Many of us are struggling, and many of us are facing challenges. They may be physical, mental or emotional. Maybe you have suffered some kind of loss in your life, your health, a job or maybe friendships. This can have an impact on your self-esteem and confidence which you need in order to heal, improve and enjoy a better quality of life. Confidence and self-esteem make a tremendous difference in your life and the lives of those around you. I have provided some tips that I have found to be helpful to me on building self-esteem and confidence while you are struggling, and I would like to share them with you. [Read more…]

Surviving Chronic Illness Through Commitment

commitment

Surviving Chronic Illness Through Commitment

In my latest post, I shared the importance of having hope when surviving chronic illness. You can read about that here. The seventh quality that is crucial when surviving chronic illness is commitment. Staying committed to your loved ones is a critical component when dealing and healing through chronic illnesses. You need to be committed to stick out the fight for recovery with your loved ones. Commitment helps families get through the toughest of times. [Read more…]

Surviving Chronic Illness Through Hope

Surviving Chronic Illness Through Hope

In a previous blog entry, I discussed the meaning of acceptance. If you’re interested you can learn more about surviving chronic illness through acceptance here. The sixth quality one must consider when surviving chronic illness is hope. If you are left with nothing else, you must then hold on to hope. While I still lingered in my darkest days, I held firmly to hope. It is what kept me moving forward. Maintaining your hopes and dreams during times of trials and tribulations is a vital part of conquering them.
What does hope mean to the person that is living with a chronic illness? [Read more…]

Surviving Chronic Illness Through Acceptance

Acceptance

Alanna Wong writes about surviving trauma through acceptance.

Surviving Chronic Illness Through Acceptance

Today I am continuing my series on the seven qualities needed to survive chronic illness and overcome struggle. The first quality I wrote about is resilience, the second is strength, courage is the third, the fourth is love which brings us to the fifth quality, acceptance.

The fifth quality that a person needs when surviving chronic illness is acceptance from the people around them. Acceptance is extremely important when surviving chronic illness and overcoming a struggle. I never really knew the importance of acceptance until I personally experienced going through a traumatic experience. When you go through a tough time you begin to learn who accepts you and who doesn’t. Learn to appreciate and acknowledge the people who do not judge you in a negative way. Ask yourself, “Am I acknowledging and respecting that person’s kind treatment?” Or am I trying to find acceptance in people who are not able to give me the acceptance that I need.  Keep the ones who accept you close to you. If someone doesn’t accept you during your hardship, it may be time to move on.

So what does acceptance mean?  Acceptance is welcoming. It is letting go of your disappointments. It is seeing the positive. Acceptance is loving the person in the state that they are in and not trying to change or fix them. Acceptance is not blaming. It is not demanding. Acceptance is understanding. Acceptance is inclusion. Acceptance is love. Acceptance is what every person needs especially when going through a traumatic experience. Acceptance is checking in with the person that is struggling. Acceptance is sharing a moment in life together. Acceptance is being kind. Acceptance is having time. Acceptance is approval. Acceptance is sticking around.

I hope you enjoyed this post! If you did enjoy it, please share it with your friends and leave a comment below! I love hearing from you!

All the best,

Alanna Wong

p.s. If you haven’t read the introductory section of my book about my 13 year battle with Kleine-Levin Syndrome, you can read it here: http://alannawonglife.com/real-life-sleeping-beauty/ 

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