Actress Selma Blair And Her MS Diagnosis

If there’s one thing I enjoy doing, is watching early morning TV while sipping on coffee. The older children have gone off to school and my littlest babies are still in bed asleep. This morning was the same, only today, an interview with actress Selma Blair with host Robin Roberts resonated with me.

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In this interview actress Selma Blair shares her journey of living with MS – Multiple Scoliosis, a disease in which the immune system eats away the protective covering of the nerves. It can affect the brain, spinal cord and the optic nerves in your eyes. Aside from causing problems with vision, it affects your balance and muscle control, just to name a few. She has the most aggressive form of MS, and it has now affected her speech, as you’ll notice in her interview – spasmodic dysphonia, as well has her walking, which she now relies on a cane for assistance.

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Once again I saw yet another disease trying to strip away the life of a woman and first and foremost a mother. I can relate to her, as I myself am living with Chiari Malformation. It makes you forget all that you knew, the life you knew and emerges you in a new life that is so foreign it may as well bring you to your knees. At times not even knowing what hurts more, as it becomes nearly impossible to vocalize what is wrong and what one is psychically feeling.

In this interview actress Selma Blair mentions …

an experience while having to take her son to school about a mile away, when returning home, having to pull over mid way to take a nap. I can’t take my kids to school, physically my driving is limited, and when I do, it must be close to home. And I understand the need, that dire need to nap. It’s an overwhelming feeling, it takes over your body and mind, and you absolutely have to lie down – ASAP, and sleep.

shame, shame that comes with having chronic pain and a disease that inevitably prevents you from being the mother you desire to be. And all you can do is what you can, to the best of your ability.

telling her son. She mentions that it wasn’t at all difficult sharing her diagnosis with her son. And I agree! Telling the children is so important. In my case, we’ve been open with the children, from why mommy needs quiet, why mommy needs to sleep, to why mommy needs to visit the doctor and why mommy needs to do an MRI. It is paramount to keep the children in the loop!

‘what gets you through those difficult days?’ … she gets in bed and doesn’t move. You just can’t do it all and it’s fine to feel crappy. Her son gets it and she has learned not to feel guilty. This is such an important message. A message to all those parents, that feel the need to play a role they can no longer play, the one where they can do it all, without the need of a break. When you’ve been diagnosed with something like MS or Chiari Malformation, you will have those days where you can’t move, where you get stopped in your tracks and can no longer move. Don’t do more than what your body can handle, put the guilt aside and live your truth. As she said, ‘it’s fine to feel crappy.’

If you haven’t seen the interview, I encourage you to do so, spreading awareness is essential as it motivates others to come out of the shadows and not feel ashamed or alone. When you voice your experience, you not only give a face to the illness, but you help others that are going through the same.

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Reblog Wednesday: I Asked God: A Facebook Post From A Friend — Something to Stu Over

This post for ‘Reblog Wednesday’ couldn’t have come at a better time. The thoughts of wanting to feel better physically are reoccurring thoughts, coming in too often throughout my day. And the fact that I can’t change my circumstance or diagnosis is evident in this post and is the perfect reminder of things I conveniently choose to forget. This ‘Reblog Wednesday’ is from a blogger I hold dear and near to my heart, Stuarthis honesty, love for Christ and life, is what I appreciate from reading his work. I couldn’t appreciate him more than I already do.

This post unraveled the truths of my reality. I can either learn to accept my reality or continue to live in the falsehood of reminiscing of what my life once was – life without the prescription medication and physical pain. It’s up to me. If I can only touch ground, ‘come back to Earth,’ as they say, and stop living in the clouds, I’d be able to open my eyes to see my life as it is. And perhaps only then will my sense of purpose fuel my desire to live a more happy and fulfilled life.

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The conversation with God in the post reminded me of my own conversations with God.

I  want to tell God what to fix in my life …

my diagnosis – fix it, reverse it,

my physical pain – take it away,

my old, ‘normal self’ – bring her back,

my finances – increase it,

my brain / head – make it stop spinning,

my son’s autism diagnosis – make it better,

my happiness – give me more of it.

And all the while, I’ve been praying for what I cannot change. He’s saying surrender, trust me, leave it to me as I do all things for a reason – beyond your humble comprehension. The reasons for it, all will be revealed in due time – patience. And love, love is what I need, it’s what I should be praying more for, so that I may accept my diagnosis with love, accept things that I will not be able to change.

The trials and tribulations are only there to get me away from worldly things and closer to Him.

Have a blessed day.

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I asked God to take away my habit. God said, No. It is not for me to take away, but for you to give it up. I asked God to make my handicapped child whole. God said, No.. His spirit is whole, his body is only temporary. I asked God to grant me patience. God […]

via I Asked God: A Facebook Post From A Friend — Something to Stu Over

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Reblog Wednesday: My story — God’s Whispers of Truth

In my short blogging journey I can say, that I’ve come across some great people here on WordPress – phenomenal! These individuals are going through their own struggles yet still find a way to find strength and continue to find the light through the chaos that life can sometimes be. This is where today’s share comes in, I want you to meet Vivian, a fellow blogger, a sweet mama of four, wife and warrior fighting TBI – traumatic brain injury. I share her story in hopes that it allows you to know that what you’re going through today, you will get through because of Him.

Cast all your anxiety on him because he cares for you. 1 Peter 5:7

When I was diagnosed with Chiari , I can’t tell you I didn’t feel alone, I can’t tell you I didn’t feel scared and I can’t tell you I felt hopeless. But with time, things became clear and I became aware that through my diagnosis God has been helping me, helping me with patience and helping me accept myself, as I am – illness and all. He’s ahead of it all, ahead of any diagnosis and ahead of the plans He has for me.

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Welcome, my name is Vivian and I’m a TBI warrior, homeschooling mom of four and wife to a great and hard-working man. As a Christian walking through the valley of brain injury and recovery, I can not stress enough how much the power of God’s strength has held me up and given me courage and […]

via My story — God’s Whispers of Truth

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Being Thankful

Being Thankful

I was listening just recently to an actress being interviewed, she was talking about her life struggles and all the difficulties she’s had to endure. At a young age, her mother had a life altering car accident, her mother hit the windshield causing neurological trauma, changing her families lives forever. Ultimately due to the accident and her mother’s condition, the children had to be taken away, her two sisters were sent to one home, her two brothers to another home and she was placed in foster care for a few days – she was 13 years old. She talks about one of the people that inspired her, her social worker and getting to the tenth grade and not knowing how to read. This is just a small snippet of her life, of her mother and of her childhood. Her name is Tiffany Haddish, a comedian and actress. Image result for we all have issues quotesThis interview was phenomenal. And I say this because often times I think that my life is the only one that’s complicated, rough, bad and too difficult to handle sometimes – to even understand. And then I listen to testimonies like these that remind me, that I’m not alone. I’m not the only one with problems, with issues.

We all have a past, we all have and/or still going through things that are going to test us to the core of our faith, perhaps a diagnosis, a separation or job loss. Faith? Yes, that what seems unattainable but very possible. It helps us rise in times when we just don’t see hope, when we don’t see light because all we feel is pain. Hope? Yes, that’s when we begin to desire to get through the bad because we realize that the light is brighter than the darkness.

The thing that allows me to connect with people is when I see past what my eyes see and I listen to their life’s journey. I see that we’re all different, we come from all walks of life and born from all parts of the map. Yet, there’s one thing that connects me with you, the fact that you and I have been through difficulties in our lifetime. In some cases, the difficulties are bigger while others are minor, but they’re life altering nonetheless. Yet aside from all that, we realize that we’re trying to be the best version of ourselves and living the best life that we can – a connection like no other.

I’ve realized that embracing where I am today, is accepting my journey. The difficulties I’ve had to face has brought me to this day – where I am today – I will be thankful for today.

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Reblog Wednesday: No Perfect Answer — MakeItUltra™

This ‘Reblog Wednesday’ comes from Dr. Perry, his blog is so motivational. Do you ever go about your day questioning certain things in your life? Do you ever get them answered, perhaps some you do, while others you don’t. This quote reminds me of how there have been too many times to count the days where my questions go unanswered. At times I question many things most often when I’m in a doctor’s appointment waiting to be called, during an MRI exam or a CT Scan, etc. These specific events always take me back to a place I often don’t like to revisit. In particular the why’s of my Chiari and Syringomyelia diagnosis, why not, after all, I am that 1 in 1,000. And maybe this isn’t the case for you, maybe you have unanswered questions about the loss of a job, heartbreak, a breakup, a medical diagnosis for yourself or someone you know, whatever the case maybe, this quote comes to relieve you of that stress. I am a true believer that in God’s hands is where it all must go, and with this comes freedom.

Freedom is, when you stay in the now and leave tomorrow for tomorrow.

And as the quote continues to read, ‘there may very well be no perfect answer.’ He’s absolutely right, as stubborn as I am, even if I did get an answer as to why I am that 1 in 1,000 the answer may very well not be enough for me.

via No Perfect Answer — MakeItUltra™

If I can’t change my diagnosis, at least I can change my perspective.

Happy Wednesday.

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National Chiari Awareness Month – 2018

National Chiari Awareness Month – 2018

The month of September is Chiari Awareness Month. In May of 2013 I was diagnosed with Chiari 1 Malformation and Syringomyelia and my life since then has changed – tremendously. I remember going recently to a store, because it’s a place I visit regularly – they’re a sweet Vietnamese family, I’ve got the chance to get to know them. We were discussing Chiari the last time I went there, one of the daughters said, ‘besides going to the hospital when I was born, I’ve never been there.’ I was speechless, I know my way around – just about, every hospital in my area, I even know what hospital not to go to because they lack ‘my’ department – neurology. The difference between someone with Chiari Malformation, Syringomyelia, among many other different illnesses, is that we know too well what is like to be at a hospital – while others don’t. It’s an unfortunate truth.

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There are currently four types of Chiari Malformation and each are classified by the severity of the disorder and the parts of the brain that descend into the spinal canal. As you can see, I have type 1, this is when the lower part of the cerebellum called the cerebellar tonsils extends into the foramen magnum. This is where only the spinal cord would otherwise pass through. Chiari unfortunately goes un-diagnosed, and is first noticed during adolescence or adulthood, usually by accident during an examination of another condition. As it happened to me, I went into the ER in May of 2013 for what was suppose to be a quick ‘trip to the ER,’ but turned out to be far more serious than your typical ‘headache.’

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What surgeries have I had for Chiari 1 Malformation and Syringomyelia? As for the Chiari, in May of 2013 I had emergency posterior fossa decompression, here the surgeon created more space for the cerebellum as this relieves pressure on the spinal cord. At this time the surgeon also made an incision on the back of the head and down the neck area, and removed a small portion of the bone at the bottom of the skull, this is called, craniotomy.

In November 2017, for the Syringomyelia, I had spinal laminectomy in which they placed a syrinx shunt – this shunt (a flexible, tube like device, according to my surgeon it’s also less than the size of a hair strand in diameter) will remain in my body forever. The syrinx shunt diverts the fluid from the syrinx into another space in the body where it can be absorbed. There are a few locations where the fluid can be absorbed and this is what differentiates one shunt from another. The shunt I have is absorbed in the peritoneal space, also known as the abdomen. The space location is determined on the patients case and the surgeons personal preference.

Why spread awareness for Chiari Malformation? Without awareness there is no funding, without funding, there is no research, without research, there is no cure, without a cure, there is no hope. However, if not in my lifetime, maybe another’s, but I pray that there will be a cure for Chiari – someday.

Today, I’m still living with a number of ongoing symptoms such as difficulty swallowing, headaches, vertigo, imbalance, difficulty concentrating, etc. which also includes chronic pain. I need to be monitored for changes that can occur in the CSF flow or cerebrospinal fluid. I’m currently experiencing severe numbness on my left side, especially in my face and tongue – you’d never know it if you’d see me. However, I finally have a great neurological team that is helping by monitoring me, via MRI’s and managing my pain levels, via medication, as best as they can. It’ll always be a process, but it’s a process that with patience, it’s as tolerable as it can be.

The perfect cure for worry, is to trust in God. 

And in light of my series ‘Happy Meme Monday’ I’ve decided to include some Chiari Malformation memes. Enjoy.

These memes – sum it all up. Have a blessed Labor Day.

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3.2.1. Quote Me Challenge

Thank you Stuart for this ‘Quote Me’ Challenge! I’ve linked his challenge, so you can go there and read his, if you haven’t already. I enjoy his blog so much, especially since through his testimony I am reminded that with God’s love and grace, all is possible. Let me begin.

The Rules Of This Challenge Are As Follows:

• Thank the Selector

• Post 2 quotes for the dedicated topic of the day

• Select 3 bloggers to take part in ‘3.2.1 Quote Me!’

• And give them a topic/word

Note: Although this is the topic for today there is no specific deadline to it, meaning you can answer when you chose.

My topic of the day as given to me by Stuart is FORGIVENESS

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My 2 Quotes Are:

This one is from Matthew 18: 21- 22

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And one last one, because I can’t think of ‘forgiveness’ without thinking of this particular quote said by Oprah Winfrey.

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The Three Bloggers I Choose Are:

Real Life Of An MSW

Weeping Pines

Lynnetteok

My Word For You Is: HOPE

I am eager to read what quotes you choose for this word!

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