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.

A-

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Happy Meme Monday: When You Have More Than One Child – Or Two

If there’s something to know about what happens when I walk out my door with my tribe, is that we can get a lot of attention and often times, not the good kind of attention – facial expressions, whispering, you name it, it’s happened! Do you get that or is just me? No, yes – just me?! Haha!

So, it’s happened where a complete stranger will stop me and ask me if the children are all mine, to which I’ll respond with something along these lines …. because, hey, no harm in playing along with what seems to be peoples worst nightmares come to reality in form of mwua.

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I never did have twins – only what seems to be a couple sets in the mix!

Hope you have a great Monday.

A-

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Hard Mom Days: A Kindhearted Woman Gains Respect

Hard Mom Days: A Kindhearted Woman Gains Respect

The topic of motherhood can be a bit of a free for all – some think that either you’re doing too little or not enough and their need to give unsolicited advice to tell you what you should be doing with your children. This is why, I always choose to hold opinions of others to myself. As I myself run on survival mode.

So, I’ll begin by telling you how exhausted I am, how physically draining I feel, how sleepy I feel – that sleep that has you not being able to choose whether to eat or sleep and you choose to sleep, how hungry I feel to have maybe 5 minutes to myself! Not to go out, but rather have 5 minutes without the door to my bedroom or bathroom – because you know you can’t lock the door there, continuously opening with little voices asking where my ‘X’ toy is, where my ‘X’ shoe is, where my green ‘X’ shirt is and the list goes on! Yes I am grateful for the little ones, yes I feel overwhelmingly blessed to have them, yes I know they’re growing up, yes they will grow and leave my home. Yes, yes, yes! But give me a minute to let this out! Give me a moment without judgment! It’s OK as a mom to say, I need a break – and not only on Mother’s Day, a breather, a shower, a time to do my hair, a time to eat without sharing – is that being selfish? And a time for rest!

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What a week it’s been!! I have a house full of sick kids – and I won’t remind you how many there are, because the school going children tend to bring home all the germs they can gather and then spread them to the little ones. You know, that snowball effect?! And the only not-so sick child I had, today woke up throwing up. Welcome to motherhood! The land of the unknown, where anything can happen and where all things change at any given moment. Also, where your title as mom can quickly shift from mom to nurse to lullaby singer to clean up crew person of projectile things that come out of little ones mouth to sleep rocker of sick children, just name a few. And then just like that, it’s 4 am. I am so thankful that on most days, I can gather enough strength and not take out my chronic physical pain onto the children. We mothers can do that so quickly – especially when we are exhausted and running on no sleep. If I feel overwhelmed with the children, I give myself a time out. I take this time – be it 5 minutes or 2, to practice my breathing, gather and center myself. Because as mother’s we choose which road to take with each particular child of ours. The impatient child – that can test our own patience, the not-so still child, the loud child to the one that never seems to stop the crying.

‘A kindhearted woman gains respect’ from Proverbs 11:16 is such an encouraging scripture, it serves as a reminder how yelling and anything other than showing respect to the little ones is not a solution to solving a chaotic situation. Because when I’m tired, when I haven’t had the time to eat and had very little sleep, I can get mean, fast. The voice gets higher and I get snappy. So, this is a beautiful reminder to be kind and from my kindness the children will respond kindly in return. It’s so refreshing to know that in any ‘hard’ mom day, through your actions as a mom, you will gain your children’s respect.

‘As one whom his mother comforts, so I will comfort you.’ – Isaiah 66:13 I often think that I am giving my all, to my children to my home to my spouse and at times ask, what about me, where do I stand, who comforts me?! Because as a mother, I comfort my little ones, at homework time – encouraging them, when they fall – healing them, when they can’t sleep – comforting them and when they feel scared – loving them. I say them because it makes me feel less of a priority and feel myself being pushed more and more to the far back of the line. However, this verse reminds me that I am a priority, that I am loved and that I am comforted by the most faithful of them all. With this He reminds me that as I comfort my child, He also comforts me – and you.

Hope you’ve had a wonderful Sunday.

A-

Finding peace amongst the chaos in life

Finding peace amongst the chaos in life

I always try to keep in mind that I am not the only one that is going through rough patches in life. May it be a loss, a break up, experiencing some mommy/daddy guilt, don’t understand why things happen, don’t understand how things have happened, how I got here, wish things were different, etc. you get the idea. If you’ve followed my short journey, you know that I’ve experienced life changing surgeries due to Chiari + Syringomyelia. Although many times I’ve tried to put it behind me, there is always something that happens in my day that reminds me of my disability. You know those moments, where you are trying to go about life while trying to forget other parts of your life as well? What do you do? Do you confront them head on, do you even acknowledge them? I know a lot of times we, or rather I, try to put my best foot forward, have my best attitude or simply try to mask what I’m feeling with other more prettier things. This can absolutely happen in this world that is so consumed by technology and phone applications, like Instagram and Facebook. I personally think these outlets pressure us into thinking reality is too ugly to post. But, masking reality can be so exhausting, especially for someone like myself, being a full-time stay at home mom and dealing with chronic pain. It’s exhausting! I know I vent to my wonderful therapist, but I know others don’t have that outlet, either you choose not to or can’t for whatever reason.

I grew up in a relatively strict religious home and was taught at an early age to turn to the Lord for comfort and do His holy will. At the same time and you can read more about it here, I am also a firm believer in finding professional help for things like depression, anxiety, etc. Lately however, hence my reasons for my continued therapeutic sessions have been questioning other things. Have you found yourself there? I’m there. I’m not sure where you find your peace amongst the chaos in life, where do you find your happiness, where do you find your smile, is it in your children, your religion, spouse or partner? I know at times the plans my 15 or even 18 year old self had suddenly come to mind and then reality strikes and there’re the reminder of how none of that happened. However, I also know and am reminded that, you can make many plans, but the Lord’s purpose will always prevail. What does this mean, well, that if you and I don’t see our life the way we’d imagined it, know that it is however going the way the Lord has planned it. So powerful, yet I still go back and forth with the Lord, like a small child coming back to me after I’ve told them no. Can we compare it that way? Are we that nagging child asking the Lord, why don’t things go my way? As the priest put it on Easter Vigil this year and as you can see, it struck a cord with me, he said, “do you think God made a mistake with you, do you think the bastard sitting next to you isn’t for you?” – aka your spouse. HAHA! There’s nothing like hearing a homily that delivers and gives you a good laugh at the same time.

So, whether you are religious or not, whether you seek in the Lord or not, whether you turn to prayer or not, we are all seeking the same thing, peace and to love and be loved. We are all trying to be seen and heard. If you’re in this same space as myself, I tell you, don’t give up, find support, find the courage to find your voice and ask for help.

Also, know that your struggle is part of your journey. And as the scripture says, “this too shall pass, worries, hardships, and the things of this world are temporary, eternity is forever.” And you my friend are perfectly imperfect and that’s OK.

Ana-

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Photo: Aaron Burden

Life Perspective After Chiari + Syringomyelia Diagnosis

When I was diagnosed and operated for Chiari 1 Malformation I had three young little ones, my oldest being in kindergarten at the time. So, I arrived to the ER in May 2013 and never imagined the diagnosis that would result from that visit.  You can read more in depth of my story in my post titled In 2013 Life Began with Chiari + Syringomyelia So, after the neurosurgeon came in to my hospital room and told me I needed emergency Craniotomy or brain surgery, I requested to leave home to get things in order before the surgery. The mom in me wasn’t ready for surgery, I wanted to get the house in order before my absence. I can’t ever seem to get my mind to stop, it just never stops. I was in observation for a couple days before my surgery day and during this time I was able to do homework with my daughter from my hospital bed. I was also able to inform her school of the situation that the family and I were having. It really did take a village to get through surgery and recovery.

 

Then you fast forward to 2017 when I had Laminectomy surgery for Syringomyelia, this time I had six little ones – and still do. The recovery hasn’t been easy but it’s also helped me see my husband and the little faces of God’s perfect creation looking back at me. Children really do give you the inner strength you thought wasn’t in you, the courage and fight you thought you didn’t have. I now, few years later look at this disease in a different perspective. I’m not well, probably won’t ever will be and that’s OK. It’s about accepting things for what they are and stop trying to change things that can not.  If I decide to physically shop at a store, I have to know the store, I have to know the layout, so that my shopping trip is as quick as possible. I like to call this my new normal as opposed to something being wrong. There is no normal, there is no right or wrong way your health should be. Also, know that you don’t have to try to make other’s understand what you’re going through, try to explain this rare disorder you find yourself living with. This could be such a burden and so frustrating. If you have even one person you can rely on, that’s great and if you know of another Chiarian, lean on them! Also, feel free to be present in your pain, know it’s OK to not have a good day when living with Chiari, especially when this disease is physically unseen, it’s an unseen disability.

-Ana

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In 2013 Life Began with Chiari + Syringomyelia

As short as I’d like this post to be, I have an inkling of a feeling it’ll be anything but. However, my goal is to try to be as thorough as I can, starting from the beginning of my journey with the disease. A little history of my health, as far back as I can remember as a child and adolescent, I had ongoing headaches and migraines. As my mom would later realize, she’d give me Tylenol just so that I could get through school hours without having a headache mid day. My first episode to what we know now to have been Chiari 1 Malformation, unfortunately went undiagnosed at the hospital. After many tests, I was sent home with what they said was a migraine. This is unfortunate but true to many Chiarians. So after I had a second episode we decided to now go to a different hospital. The official diagnosis came in May 5, 2013 when what was supposed to be a quick trip to the ER, would be the trip that ultimately changed my life. The reason for the ER trip, muscle weakness, problems with coordination, trouble walking, blurred vision, seeing blotchy black spots, sensitive to light, sensitive to noise, dizziness, headache, vomiting and nausea, vertigo, decreased sensation on my left side and trouble swallowing. Things like bending forward, pulling, pushing, straining, lifting became intolerable. After blood work, CT Scan and MRI the diagnosis was Chiari 1 Malformation and Syringomyelia.

We’ll go through a quick crash course for this rare disease, Chiari 1 Malformation is a condition in which brain tissue extends out of the skull causing it to press downward into your spinal canal, present at birth. What does this mean you ask, basically the brain is too big for the skull and it’s causing the brain to stick out or herniate at the base of the skull causing pressure to the spine, my cerebellar descended 12.8 mm downward.

As to Syringomyelia, this is a rare disorder in which a cyst forms within your spinal cord. This fluid-filled cyst or syrinx, can expand over time and compress and damage part of your spinal cord from its center outward. My syrinx began at C3 to the top of T2. You must know that in most circumstances, to have a syrinx present is considered to be a side effect of another problem, in my case, Chiari. The surgery that one can have to relieve the pressure in the head caused by Chiari is decompression surgery.

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What is decompression surgery? I’ll go a little more in depth with my personal 2013 decompression surgery for Chiari. I’ll give you small snippets of what was done inside the operating room. While I was fully sedated, endotracheal intubation was done by the anesthesia team. The eyes are then taped shut and I was placed on the Jackson table with Wilson frame. The head was clamped in the Mayfield 3-pin head holder and affixed to the bed. Then, moving the neck slightly forward, the hair is now clipped and/or shaved with a hair clipper. The surgeon now makes a mid-line skin incision from the back of neck area up to the head to release pressure at the base of the skull. This is done by sawing off bone, opening the dura and then closing the dura matter with a patch. The bone would not be returned back to area. Because the cerebellar tonsils descent or herniation was significant – 12.8 mm to be exact, the decision was made to shrink the tonsils. They removed the tonsils and cerebellar tissue by a few mm’s on each side. A dural repair graft was sewn in to achieve further dural compression and the dura was stitched closed. Lastly, I was then  flipped over to a regular bed and extubated before leaving the operating room. The patient would have a hospital stay of a couple days – mine was 15 days. The neurosurgeon on call the day I arrived at the ER on May 6, 2013 would also be my surgeon on May 9, 2013, surgery day. After my discharge and before my post operative follow up visit with the surgeon, I was admitted to the ER twice, both times diagnosed with aseptic meningitis also known as viral meningitis. Note that viral meningitis is more common and less severe than bacterial meningitis. I was also placed on medications to help with the anxiety that followed from surgery, pain medications and muscle relaxers.

Although I was also diagnosed with Syringomyelia at the same time as Chiari, the surgeon did not attempt to touch this at this time. He mentioned that addressing the Syringomyelia would be  too risky – but aren’t all surgeries risky?

Please keep in mind that I am not a doctor by any means and by writing this, I am expressing my personal experience with the disease. The one of many obstacles Chiarian’s face is that it seems as if no one has ever even heard of these conditions. The lack of general awareness Chiari has, has encouraged me to be a voice and help spread awareness – hence the reason behind creating this blog. Because ultimately this can become a burden – huge, to patients trying to inform family, loved ones, friends, co-workers etc., about what they go through. Where do you begin, how to even explain?! Also, as you may already know, be informed that like any surgery there are potential risks and other procedures may be needed in the future even after a successfully performed decompression.

So, fast forward to 2017, endless complaints to my neurologist and surgeon regarding my 2013 diagnosis of Syringomyelia, all of which assured me all was good. I was still since my 2013 diagnosis, experiencing ongoing symptoms, had countless ER trips, on many pain medications that I decided to make a change. I changed hospitals, doctors and started from zero. I then visited multiple doctors in different hospitals, had MRI’s done for all of them and all of which said to continue medication and that addressing the Syringomyelia surgically would be too much of a risk. Finally after having a borderline break down came a break through. I remembered and decided to reach out to a surgeon I had researched in 2013 after my decompression, Dr. Barth Green, a neurosurgeon. His office isn’t too far from where I live in Florida and so I made the decision to call his office. I had a lot of digging to do first for the neurologist Dr. Martinez-Arizala -they work in the same office. He first needed to see my medical records to determine if my case would be moved to surgeon Dr. Green for final evaluation. The process would take weeks. Yes, this is the system and this is the way things operate. This meant I had to go back to the hospital where I had decompression surgery to gather it all. I had to get all of my records, from MRI’s to CT scans, all to be saved on CD’s, this included before and after surgery, any and all medical records, operative report, all doctors notes, etc. etc.! All. Of. It. He wanted to see it all! Thankfully all was not in vain, I was called by the surgeons nurse to come in and meet with Dr. Green soon after all my medical records were sent. He had already evaluated my case/records on our initial visit and recommended laminectomy with a possible shunting of the cyst, meaning placing a shunt was a possibility. They say, “possible shunting” because even after having done an MRI prior to surgery, the final decision is made at the time of surgery. There is really no way of knowing what the doctor is dealing with until he opens – too graphic! Sorry! The date of surgery was on November 7, 2017 and here laminectomy was performed and a syrinx shunt was placed. The syrinx shunt diverts the fluid from the syrinx into another space where it can be absorbed. There’s 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 or abdomen. The space location is determined on the patients case and the surgeons personal preference.

I appreciate you coming this far in the post and following my journey. Those of you that can tolerate not so pleasant images, I share some pictures of my hospital stay following my most recent November 7, 2017 surgery for Syringomyelia.

Xo – Ana

 

 Pictures following my November 7, 2017 surgery for Syringomyelia