Neurologist And Neurological Mess

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To the Neurologist!

I love my regular neurologist, but I FINALLY got an appointment to see my memory neurologist and I couldn’t be happier.  I called on February 4 and got the choice for an appointment on the 11th or in April.  Trust me, it was not a hard decision.  I had to reschedule another doctor appointment, but it is worth getting to see this man who I have prayed so hard for.  I and really excited to see what he has planned for my next steps.

Going to the doctor is usually not for a fun purpose, but I am just hoping for a productive outcome.  I know that we have a ways to go, but I hope that we have made clear progress in some direction that he can work with.  God willing, we will start on the road to Cleveland and see some super specialized doctors.

Be thankful if you have the opportunity to see doctors and get the care you need.  I know my visits to this particular doctor run about $600, so be thankful for every insurance and discount…I KNOW I am.  I would never be able to afford this care on my own.  Like I have done, use every option and benefit available to you to better your health.  As long as it is in your budget, go to physical therapy twice a week and do the exercises at home.  It helps with just daily mobility and the program is tailored to your body by someone who had to do some schooling.  See a dietitian or nutritionist to help make reasonable meal and food choices that will assist with specific health goals.

I am not saying to abuse the system, any system, for your gain, but if you need help doing your hair, physical therapy helps in a longer term way.  Using your body in a healthy way and eating well can help keep you off a lot of medications later, so take care of yourself and use the resources available to you.  This includes mental health.  It is OK to see a therapist.  They can be very helpful and they aren’t always long term.

Last, if you think something strange is going on in your body, talk to your doctor until they listen (that’s how I got brain surgery!!) because sometimes it takes some convincing, but eventually, you will get the right doctor and things will begin to fall into place for you.  I could have suffered serious damage to my spine had I let the pain continue.  I was lucky that it debilitated me and I was forced to go to the doctor.  Use your resources.  That $10 visit cost about $150K in hospital and surgeon fees, but my insurance at the time paid 100% for hospitalized, necessary surgery.

So, That’s my story.  Expect an update (outside of normal release days) about what happened!

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Music Therapy

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Music

There are many things that challenge me in life right now.  It has been a long road figuring out what I can and can’t do about certain situations.  I CAN call and check the status of a referral, even ask them to expedite it.  I CAN NOT circumvent any part of their process and having an attitude with them with NOT get things done faster.  So, it is empowering to know that I can keep track of the process.

However, I have some remaining frustration because I only have so much control over the process.  So, my neurologist referred me to Music Therapy.  I consider myself a musician.  I sing, I understand Music Theory, I write, but I am not at a professional level and right now I pretty much just enjoy listening to music and playing my ukulele.  So, when the therapist was explaining to me that we were going to listen to music and not offer any views about the musical structure or type of music, we were going to focus on how the music made me feel and why.  I was quite skeptical.

Although I didn’t get to finish, being a student of music caused me to become very critical of music.  Not in the negative way, but to listen to the instrumentation, the rhythm, the back-beat, the notes in cracks, and all sorts of musical methods, so I was not convinced that this was going to be a successful therapy.  HOWEVER, I remain open to all of my doctors’ suggestions and try them because I am willing to do anything if it means I will get better.

I have been in Music therapy for three months.   I love it!  So, for the curious, I will spill the beans on what happens in some of my sessions.

We go into a little office either with a desk or with really comfortable chairs.  It depends on what she has planned for that session.  If we go with the desk then she will do a guided meditation with very neutral background music that does not follow the common harmonic progressions that we are used to hearing.  It is the type of meditation that allows you to focus on the physical feelings in your body and focus on each part and relax it.  Then, you think of a place that make you feel happy or loved or comforted, kinda depends on what you are going through.  When you think of this place, you look around, in your mind you focus on the things in this place that you find beautiful or comforting and you impress that feeling of calm in your head.  Then, you get to draw the place!  Once it was a forest, dappled with sunlight.  Once it was a banana split.  I don’t question the meaning of these things because that is not the point.  I enjoy both things and they make me happy and comfort me.

Sometimes we go into the room with comfy chairs.  In this room we do a different, more challenging type of guided meditation.  Often it is dealing with a specific anxiety and sort of untangling it and allowing me to look at the situation without distraction.  What this does specifically for me is helps me see what I have the ability to do and what is outside of my ability.  I can then act on the things that need attention and I do not feel guilty about things I have no control over.  It is really great.

One of my favorite exercises is lyrical analysis.  We don’t stick to any particular genre of music, she chooses music based on lyrics.  Remember, it is not a time to spend judging the musical composition of the piece, UNLESS it is in conjunction with part of the lyrical structure.  We talk about how the words are used in the song and if I can or cannot relate to it.  I am always asked what phrase catches my my attention the most and why.  It has exposed me to music that I would have never listened to on my own and I have bought a few of the songs.

The most important thing we did (in my opinion) is on our second visit she helped me create several playlists that I can use to help shift my mood when I am upset or frustrated.  It is a way to acknowledge how you feel and then proactively improve your mood by listening to music that is gradually uplifting.  At this point, I can just pick and choose a song that matches my mood, one that feels comforting, and one that makes me feel energetic.  It is a great tool for preparing for situations that I expect to be anxiety inducing and I use it all of the time now.

I must admit that the worst part of music therapy is that it is not an ongoing type of therapy.  We work in four week blocks and then we do an assessment.  When I started we met weekly and now we are meeting every two weeks.  Eventually, we may only meet during times of medical and severe emotional crisis.  I am very thankful that my therapist is the kind, gentle soul that she is.  I am glad that I can describe my feelings to her using musical terms and she gets it.

I am glad that the art therapies are becoming more common in the treatment of chronic illness because everyone needs a way to express themselves and music touches us in ways that can be indescribable but understood.  I encourage everyone who has the ability to take advantage of alternative therapies in conjunction with the more traditional treatments and therapies.  You might be as skeptical as I was, but you might end up advocating for more access because of how helpful it was.  Should you try it and it doesn’t work for you, don’t give up, try something different.  We can’t always get rid of the pain or sickness, but we can change our perspective.  It’s VERY DIFFICULT, but it IS possible!

Self Love Powers, GO!

Anime stick Michelle

I call upon my self-care kit!

Ya’ll know 2018 is the year of self-care.  So, you see, I try to take time out of every day to to do something nice for myself.  Sometimes it’s a good foot bath or a nice nail job.  Other days, it’s a face mask and drinking coffee while listening to some nice music.

None of these things give me superpowers or make me young and beautiful again, but they remind me that I am worth spending time on myself. I am happy that I will at least be hydrated and have smooth skin and good smelling feet.  What else do I really need in life at this point?  I can’t get anything, so I may as well care for what I have!

Even these blogs help me feel better about the life I am leading and how I spend my time.  I don’t keep my thoughts for long, so I draw them and write them down.  I will forget this and come across it later and think about how silly I am!  It is worth it for the sake of knowing in the future that I have been working harder to get myself to a better place!

Please, take the time to do something you love.  Something that benefits you and no one else.  Fill yourself up with your love so you have plenty to pour out on other people.

Also, check out The Life Of A Music Monkey

Chiari Defense System

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Chiari defense system

For more than two years I have felt the unrelenting pain of my head and had to deal with my slowly deteriorating body.  All this while apparently looking “normal” on the outside and boy has that really shown me the true colors of the people around me.  Many have rallied to my side, not really understanding what I am going through, but understanding that no one subjects themself to brain surgery because they are a hypochondriac or because (really) a doctor didn’t feel it was the best procedure to save their life or their body from further damage.

I have a “friend” who does not apparently understand the grapevine theory and she feels that since I can post on Facebook and Instagram and I am not (always) bedridden that I am just faking it. I don’t even have the energy to hash this out with her.  After knowing her for sixteen years, and the type of person she is, and the things she has said about other people, this is just the kind of thing she would say.  I am not messed up about it.  we were never that close anyway.  I just put up a brick and block her out, like I do with doctors that don’t listen, church-folk who recommend kale, strangers who look at me crazy when I wander the grocery store and anyone else who is just a distraction.

The people eventually get easier and easier to block out.  Stop answering the calls or texts. go to a different church service, move if possible, change that phone number, get transferred at work.  I know how to avoid people.  If forced to, I will use the strongest tool in my arsenal; ignore you to your face as you speak to me in a room of people and just keep walking.  I just made you disappear before my very own eyes!  Like magic!  Although, I prefer to not have to do any of that.  I just want to be treated with dignity.

As you can tell from the picture, no matter how tall the wall is, I am always under this emotional attack.  Depression made it in.  It’s in the ground and boy has it done some damage.  It, along with hopelessness in my leg, are robbing me of being able to see any kind of positive future.  At least not here on Earth.  I am bombarded by the assumptions of those who have little to no knowledge in the field of neurology or neuropsychology, figuring that hot onions cured their headaches so they must be the Balm of Gilead and that is what I need.  Well, that and kale, of course.

Everyday I am attacked by an invisible enemy that causes pain mostly in my head but can make anything in my body hurt, or everything.  When I wake up in the mornings, I wait before I do anything.  I could have spent the night brewing a nasty headache and sometimes it takes a couple of minutes to knock the wind out of me.  I anticipate pain in the morning and become suspicious when it isn’t there.  I cautiously enjoy the day, but I spend each hour wondering when the headache will return.  It doesn’t go away for very long.

When it finally makes its reappearance, I fear how bad it will get, how long it will stay at a high intensity.  If I will have to go to the ER. If I am going to miss an engagement.  If I am going to disappoint my daughter.  If I am going to be “the flake” again.  Really, I find it to be a wonder that I don’t have heart trouble as I live in a emergency-prep mode all of the time.

Last, there is a loneliness that comes with chronic illness.  Yes, my family is the best family I could ask for. I have friends that are wonderful, kind, loving, understanding (many are in the medical field), and compassionate.  Yet, none of them know what it is really like inside.  Where I have no real memories after 2015, where I can barely read sheet music, where I pace the creaking floors of my mind wondering how I am going to care for my daughter? How am I going to care for myself? Where the accomplishments of my life gather dust and lose importance as I no longer strive to be the best, I now struggle to exist and just be.  It is a loneliness that impresses its signature on your soul and you can always feel when that same mark is upon someone close to you.

We are all warriors, fighting the battles we have been assigned in life.  We can’t really judge whose is worse, better, shorter, or longer, because it doesn’t matter.  We need to remember to fight for each other, not against each other.  Don’t force people to put up their walls because then no one may be able to help them some day.  Have some compassion.

The Pain Is Everywhere

This is a point in my journey I could not have predicted. I have never considerd myself a “happy” person, but I have always felt that I had some direction and motivation.  

The loss of my job, my memory, and some of my higher functioning has left me feeling robbed.  Chiari has stolen the things about myself that made me feel like my life had value to me or made me feel valuable.  

The hard part is staying transparent.  I began this journey so that those who came behind me would have a record of the trials I faced in case theit situation was similar to my own.  

I have a complicated history that involves some childhood horrors and now I have lost my coping mechanisms (work, work, work, work, work).  So, at my neuropsych evaluation it was recommended that I go into long-term therapy with a PhD level psychologist because now I have to work through my current life change and wade through my past so it can be fixed.  

That sounds reasonable.  Still, on the inside it drives me into an anxiety attack just thinking about it.  I don’t want to re-live that part of my life, but in a way I already am.  I feel just as trapped and hopeless as I did when I was a child, but with the added bonus of having my own child and remembering independence. 

Slowly, the enjoynents of my life are fading.  I am checking in less often.  The neuropsych eval stated that my intelligence surpasses 99% of people in my age range.  At times, I have the clarity to see that I am severly depressed and I am getting worse quickly.  I recognize the trail of red flags that my mind is desperately flinging all over, anywhere someone will look.  

That is why I have chosen to keep my battle as public as possible (without incriminating anyone or tarnishing anyone’s reputation) because it is time to stop being ashamed.  We are not ashamed of diabetes, heart disease, stroke, broken bones, or any other health problem.  We should not be ashamed if our brains aren’t functioning well either.  

So, this is why there have not been any updates.  I haven’t cared enough to do any.  I have barely cared enough to get up every day and pretend like I want to be here.  I hope that as I go through treatment, this cartoon with flourish and once again be what I created it to be.  A mockery of the crazy things people aay to me. 

After the Conversation Ends…

Chiarialone

Me having coffee with all the people who understand me.

 

A year after the surgery, and I have come to several conclusions:

1. Only my family sees what I go through every day.  They see me in pain, when I am angry, sad, they see the outbursts, the cloudy days, the restlessness, and yet even they do not truly understand what I go through.  Nor would I ever want them to.  If given the choice, I would gladly take the pain for any one of them

2. I have about five friends who know the inner details of my life, and are my friends anyway.  My life can be so gross at times.  Just think, your brain controls EVERYTHING YOUR BODY DOES!!!  Even the stuff that you prefer to keep to yourself behind the bathroom door.

3. Pain is NOT A CONTEST!!!  I do not understand the pain that cancer patients go through.  They don’t understand the pain that amputees go through.  And they don’t understand the pain that I go through.  (I make the exception for those who have Chiari and survived cancer via amputation, or something similar.)  We each have a difficult situation that we have to navigate and chances are there is physical and emotional pain that must be dealt with.  We need to respect the journey of those we meet.

4. My pain/condition/malformation is NOT  a result of God hating on me.  CHURCH!  YOU NEED TO STOP THIS MESS!  My pain is not a reflection of how of feels about me or how I feel about God.  Every major player in the Bible had issues.  More importantly, all of them died, so even if Chiari kills me, I am just doing the same thing as my forefathers!

5. My physical condition is not representative of who I am as a person.  When a doctor sees me, I am a Patient.  To my daughter, I am Mom.  To my mom I am Daughter.  To my sister, I am Sister.  To the client, I am the Designer.  To the listener, I am the Musician.  To the diner, I am the Chef.  To the random person who sees me suffering from a debilitating headache, I am disabled.  Yeah.  What if I told you that I am ALL OF THESE THINGS AND THEN SOME?!  Like the fine diamond I tell myself I am, I have many facets, I am well rounded, and quite brilliant if I may say so.  And my carrots?  The food of the gods.

6. I am deathly afraid of meeting someone I like.  Before, I felt like I had so much other stuff going for me.  Now, I don’t work, I don’t go to school, and I am gifted with the headache that keeps on giving.  I have no self confidence because I dread explaining myself and my condition AGAIN to ANOTHER person.  I haven’t even gotten to the part where I break down when they decide they can’t deal with such a problematic relationship.  I also am aware that I have developed irrational fears.  Working on that.  (Please don’t leave me a comment telling me how what I feel is wrong and what you think  is better because of whatever.  My feelings are just as valid as yours.  Thanks!)

7. I may never be taken as seriously as someone with diabetes or major physical injury.  Somehow, seeing someone testing their blood sugar is enough evidence to be able to understand their situation.  Seeing the scars left from a horrible accident are reassuring that the person is actually in pain, as you can see the evidence.  I get no courtesy in this respect.  I get told that I must feel better because I look great!  They are oblivious to the 4 layers of concealer that I put on to hide the fact I haven’t slept well in a week because of a headache.  If I don’t wear the makeup, then #4 applies.  It’s a lose/lose kind of thing.

8. I would not trade this experience for anything.  I don’t like the situations I find myself in.  I still have scars on my head from when they removed some skin for an EEG.  I hate that I don’t know when or how long my head will hurt.  I hate that my daughter now has a mom who can’t remember what day of the week it is without a phone.  I hate that I can’t remember words sometimes and I feel stupid.  That said, I am very lucky.  Within 18 months of my car accident I was imaged, diagnosed, and underwent surgery for a condition that routinely stumps medical teams who are unfamiliar with it.  I have an extremely supportive family. I would have never made it through this situation alone.  I also now know what it is like to not really carry stress from day to day.  Because my memory is very unstable I wake up every morning with a clear slate.  That is a pretty amazing feeling.  I am forced to live today.  I can’t really plan for the future because I don’t know how I will feel and I can’t remember much of the past.  All I have is right now.  I wish I had known how to live this way years ago.  Even better, I will be able to use my experiences to speak to other people and spread awareness.  And that isn’t so bad.

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“I can’t believe it’s been a whole year!  I just got a promotion, what have you been doing?”                                     “Surviving!”

The world at large does not have a thorough understanding of recovering from brain surgery.  While their lives breeze by marked by accomplishments and milestones, my days are monotonous and almost indistinguishable from one another.  My memory started fading over a year ago, and I only have vague recollections of what has been going on in my life.  I have not achieved anything, and it makes for very awkward conversations.