Happy New Decade!!

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2020. Out of my Duchie, 2019

2019 and the previous decade began as a smoldering newspaper in an alley and ended up as a rocket-propelled burning trash-bin.  In 2010 I started working with a major shipping company and I loved my job.  In 2015 I had brain surgery.  I have very little idea of what has been going on since then but it has been an emotional roller-coaster that has involved my health going from excellent to “can not donate blood or tissue” so there’s that.

I can look back on my life and see change that I swear would have broken me, but I am still here.  Where I am couldn’t be further from where I thought I would be in life.  2010 began with me as a broken woman who needed a job and by October 10, 2010 I was working.  2019 ends with a broken body that has not worked a job since October 2015, and I start 2020 very similar to the previous decade.  My body and brain are acting a bit broken and even sitting is a chore after so long.

This time I walk confidently into the year without a job and with a half-finished plan and I still expect to achieve something.  A few things if I can.  I have learned many lessons and I remember a good deal of them!  I like to think I do!  Most important lesson has been that I have control of myself and sometimes I will suffer the consequences of the actions of another person.  Sometimes that person won’t care.  Life still goes on.  The seasons change.  The moon goes through it’s phases.  I am not promised tomorrow, so right now is what matters.  I can’t change yesterday but I can work toward a better tomorrow.

Thank you for sticking around for this post to come out.  I have been working on a book and I only have so much focus and I had to let a few things go while I worked on a dream I didn’t even know I had.  I am going back onto my regular schedule after this post and I look forward to sharing the amazing things that have been said to me and the one’s I am confident people will say!

Happy New Year!  Happy New Decade! Happy New You!

Fatigue

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too tired to care what you think. Only interested in coffee and quiet. Go away.

Fatigue

There are mornings that I wake up ore tired than I was the night before.  Almost as if an unseen force was stealing my rest from me!  I may have just spent 9 hours sleeping, but my body feels like it is living off of two hours of light rest and stale coffee.  Let’s not even get into the number of naps one can fit into a day (4).

Usually, fatigue is caused by extreme physical or mental exertion, but I rarely exert large mounts of energy on anything.  So what is the cause?  I would love to say I have OBVIOUSLY been working out for 4 hours every night in my sleep, but my waistline denies such buffoonery.  It would be nice to say I spend 8 hours working very hard each day, but that definitely isn’t the case here.

In fact, if I could manage 8 productive hours, they would NEVER be in a row.  I spent two hours creating things and then my head hurt for the rest of the day.  What now?  Lay down and read until I felt better.  I got a LOT of reading done, but not much else.  I did manage to get an hour of exercise in, but that is because otherwise I can’t move well in the morning.

That hour of exercise tired me out and I clung to wakefulness until the weight on my eyelids slammed them shut for the evening.  Then, BAM!  5am, I am bright eyed and bushy tailed!  In fact, I am sitting here, writing this as I slam down coffee with whipped cream, KNOWING that within three hours I will be taping my eyes open to be awake to greet my family when they come home.  Plus I took the time to pull out the hose and water the potato.  Gonna be a rough one today!

So, what to do about fatigue?  First, try not to ramble in your blog because that is a dead giveaway as to your state of fatigue.  People don’t need to know that the hamster is gone and moths are running the place!  Second, try to plan out the things that need to get done, giving enough time to complete each task without rushing and leaving time between tasks to breath and rest.  Get to know the body signals that warn of an impending crash.  For me, I can’t keep my left eye open.  When it begins to droop and blink slower than the right eye, I already know that I have lost at least 40% of my thinking power and at least half of what is left is dedicated to breathing.

Our society makes sure we know that we have to work, work, work in order to get anywhere in life.  Fatigue does not care about aspirations. Fatigue is not concerned about bills.  It cares only for rest.  Which is what should be the focus when this is the case.  At some point, the human brain and body cannot function in a state of constant tired, but with planning and attention, life can be lived and enjoyed.  Just more slowly, which really isn’t the worst thing in a world that moves so fast.

While I am no doctor, if fatigue is a problem get checked for sleep apnea.  Treating sleep disorders can assist with fatigue if that is the cause, however, I use my CPAP and still I am fatigued.  I exercise, I eat pretty healthy, I drink water, I take my meds and supplements, I get a full night’s sleep, and still I feel like I need more rest, more sleep, and it never seems to be enough.

This is definitely something to discuss with your doctor if you have not previously experienced fatigue as it could totally mean something else is going on.  Something completely unrelated to sleep could be the cause of fatigue and other issues so while I may be entertaining and occasionally informative, I still always recommend your doctor’s advise over my experience.

Brain Fog

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Brain Fog is like when a thing happens in your head but not all the way. Coffee does not help. You will forget.

Brain Fog Brain Fog is like when a thing happens in your head but not all the way. Coffee does not help. You will forget.

This is one of those topics that I didn’t understand until I experienced it.  I figured it was just like not thinking clearly, but it is like thinking through thick black smoke.  I can see glimpses of thoughts or words but the worse I feel, the thicker the smoke is and the easier I lose concentration, focus, and thoughts.

I can be in the middle of a conversation when I am hit with brain fog and it is literally difficult to even understand what people are saying or what they mean.  It’s like their words disappear into the darkness and I understand less and less of what is going on.  I stay out of many social situations because of this.

Honestly, I have 99 problems and brain fog hasn’t been one that is high on my list to deal with.  I have not looked up ways to deal with it as I just like to wing this one.  I let it be the thing that tells me when my brain has had enough and there is not going to be any more “listening” going on.

Most people, in my experience, have not dealt with brain fog and they do not know how frustrating it is to basically wander through the day hoping that everything going OK.  It’s more than just forgetting where I put the keys, it’s putting coffee grinds in the water tank of the coffeemaker and wondering why there is no coffee.  It is putting bacon in the pan and watching it sit there for 20 minutes because I never even turned the fire on.  My personal favorite is when I wear my clothes inside out or two different shoes.

It feels devastating at times because no one wants to be controlled by the unknown and certainly no one wants to be a victim of the wrinkly thing in the noggin.  So, what blows away the billowing clouds of confusion?  Well, for me I have to gamble and hope that either a nap or a whole night’s sleep will take care of the problem.  I have also noticed that if I work during the early morning hours, I can overcome the brain fog for a while but as the day wears on, my mind becomes less trustworthy.

The upside is that there are a few things that can be done to help offset the annoyance of the fog.  Make a schedule of important things either on paper or on the phone.  I do both as it helps reinforce when things will be happening.  I do any paperwork for doctors or really anything early and at home where I can take my time.  I let other people know what my goals are so if I need help, they already know what I was trying to do.  Most of all, I give myself leeway to be whatever my brain allows me to be.  Forgiving myself all of the time meant that I was doing something wrong and I wasn’t, so my perspective had to shift so that there is no “fault” when I can’t do something.  I am not ignoring what needs to be done, I am taking my time so I can do a good job.

My greatest hope is to make the public more aware that the human brain is just as susceptible to damage and issues as the rest of the body.  Unfortunately, this does not allow others to see that there is something going on, only that this woman cannot seem to order her coffee right or that lady always forgets everything.  On the other hand, I don’t want to be identified by my forgetfulness.  So, I will ponder that, maybe on a day when I am not so tired.

Headache

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Like giving birth out of your head. Can completely incapacitate. Does not care about your "plans" or "life"

Headache

Probably the best known and least favorite symptom of Chiari Malformation I is the wretched headache that radiates pain and at times just feels like being hit with a sledge hammer.  Over and over.  Sometimes for days.  Or weeks.  Or, God forbid, years!  My neurosurgeon told me many people take years to discover the true cause of their horrific pain and while I suffered for 18 months, once I was diagnosed, I had my surgery about two weeks later.

The thing is this, unlike many other surgeries, a Chiari Decompression is not so much for the purpose of treating pain although that is always a hopeful side effect, it is to prevent further damage from occurring to the brain stem and spinal column.  Usually, opening up the space provides relief, but this is not always the case.

For me, the headaches are not as bad most of the time.  It is a headache that is pretty steady and is able to keep me just able to live life but not in the exciting way.  I have grown accustomed to the daily ins and outs of pain, they come and go throughout the day.  There are days I wake up and I know a storm is coming, or worse, it is already here.  These are often bad days where I don’t do much and I have built up a guilt tolerance.  I have to rest on these days and that is life.

There is no medication that I have been prescribed that touches the headaches, all the meds that work come from the ER, but that is not where I like to be, so I try to calm my headaches when I feel them getting out of control.  I will stop reading or doing anything that involves using my eyes, often this leads to going to sleep which often helps.  I will ice my head and forehead and that works when the pain is too intense to sleep.  I will meditate, sing to myself, and just do self-soothing actions until I can sleep.  Sleep often helps make them better or even back to normal.

I will be honest with you; I would much rather prefer a cure than the normal headache, but I will take what I can get right now!

If you want to learn more about Chiari Malformation I urge you to visit Bobby Jones CSF and take some time looking around that site. (I do not work for them, but I do  volunteer fundraising to further their cause of education and research.)

Also, if you want to help support fundraising for education and awareness about Chiari Malformation I suggest you visit Chimera Pillow and check out the comfy pillow that my mom created to help me with my headaches.  (I am a spokesperson and blogger, both volunteer…for now.)

Chiari Malformation

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Angry Brain. Creates nasty Headache. Herniating cerebellar tonsils.

Chiari Malformation September 1st

Very rarely do I lose my cool in public, but the day I was told that I had Chiari Malformation I and I would need brain surgery I flipped out.  I called my mom, barely able to compose words through gushing, hopeless sobs.  I drove to my sister’s house and cried for three days.  I have been known to be reactive at times, but this was a complete shock to me and I have never felt so scared of a word I could barely spell.

Basically, my cerebellar tonsils herniated through my foramen magnum into my neck and was compressing my brain stem.  Or, my brain fell out and made a big owie where my head and neck meet.  I only found out I had it because after a car accident I was having problems.  A year later these headaches started popping up and from there steadily became worse.  As they worsened, my memory left, my bladder lost its mind, and I lost my emotional filter that allowed me to bottle up my emotions.

My job and just about everything about my life would either disappear or change after the surgery.  I assumed I would get better.  I thought I was getting better.  Then, I began losing strength, words, balance.  Over the past five years I have been living a reality that I didn’t even know was possible.  It has changed the very fiber of who I am and while I long for the Before Time, I can only move forward.

Welcome to Chiari Conversations, and if it is your first time joining me, check out some of the older stuff.  September is recognized as Chiari Awareness month and every year I try to do something everyday to spread awareness.  Last year I think it was make a video everyday, but this year I will be focusing on my comic content.  While I have better artistic skills, I chose a stick figure to represent myself because my world seemed so limited after my surgery and people would say crazy things to me and I often envisioned myself as a stick figure in a ridiculous comic.  As if this situation in no way reflects reality, but the absurd part is that it does.  People have rudimentary ideas about illness, pain, mental illness, and they are certainly not afraid to share them!

In all of this time (ok, only like two years) I have learned that this is just a good way for me to express my conversations, frustrations, dreams, hopes, and I hope it shows.  I hope you join me for the month as I will release a post everyday detailing my problems with Chiari and its related issues.  I hope you get a laugh and learn a thing.

If you want to learn more about Chiari Malformation and Syringomyelia (its evil cousin) please visit Bobby Jones CSF and look around their site for very useful information.  Every year I help by volunteering to do their unite@night walk to help raise awareness and funds for research.

If you want to read my journey with Chiari, read The Life Of A Music Monkey although it can get pretty real over there, it is usually funny or at the least informative (usually).

If you want a comfy pillow check out Chimera Pillow and see the wonderful, omnipositional pillow that has an ice/heat gel pack and makes planes bearable (for me, at least).  I am the SpokesMichelle and a blogger on their site, both are volunteer.  The company is small, but it isn’t just about the pillows, it’s about spreading awareness and educating people.

Awareness

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Chiari Awareness

It feels like the years slip by now.  I don’t know if that is a symptom of getting older or forgetting what’s going on.  Once again, September is on its way and for me that means doing something to help spread the word about Chiari Malformation.

I always hope that the little bit I am able to do is somehow helping.  This year has been one of the most difficult and honestly I look forward to better years to come.  However, I didn’t come here to have a pity party, I came here because it is my birthday week and I still have blogs to write!!  I came here because I want to prepare anyone on me feed for some September madness.  I will be making a cartoon everyday about my experience with Chiari!

So enjoy the next 30 days (or so) and help spread the word about Chiari Malformation!

Bubble Of Love

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Surrounded By Love

I am not a person of much affection.  Of course, if someone saw me at church the wrong impression would be made, but I am a minister, I must love on the people.  In my personal life I don’t seek the affection of the people around me very often.  I have always felt that I needed to stand on my love for myself.

Coming back from Cleveland was quite the experience as when I went to church is was like I had just come out of a coma!  So many people were worried about me and concerned.  A lot of people did not know why I was out of town, but because my mom and I both were missing, people got curious.

Now that I am back, everyone in interested to know what is going on and I am just telling people I don’t have epilepsy but I have seizures.  I suppose that is enough, more than enough, really, I don’t owe anyone answers,

Yet, it is humbling to know that all of these people have been thinking about me and praying for me and asking about me.  I try to stay out of the public eye, especially now that my role in the ministry has changed.  Not being involved in the more personal aspect of ministry is a little saddening, however, I have time to study and grow as I go through my therapy and other activities to get back on track in life.

Most of all, my family has been the protective force around me that has held me together for so long.  I can’t even imagine going through this without them being here with me. They are amazing and I genuinely feel bad for people who lack this type of support system.

A future goal is to solve the lack of healthy support systems available to those who are going through serious, traumatic, painful, or chronic situations.  I wish I could solve all of these issues right now, but I have to have some time and resources.  One day, my platform will me much larger than it is today and I will use it to help not only find a cure for Chiari, but to help provide the type of familial support that people need.  Day by day!

Sleep Deprivation

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Sleep Deprivationhome

So, I have been blogging about sleep deprivation.  It was an experience that is nothing like living a full life 20 hours a day.  It is like living an eternity in 7 days.  Losing hours of sleep means losing track of some of my reality and I am becoming more OK with that.

Being away from home was difficult because on one hand it felt like we had just left the house.  On the other hand it felt like we were gone for months and the journey would never end.  My mom was the tether between the world I was comfortable with and this new place that was often uncomfortable.  I miss the overly sure part of myself, but I am glad that I have people on my side when I need them.

By the time the trip was over, I could have cared less about anything.  I just wanted to go home and sleep. I was tired in a way I had never experienced and everything annoyed me.  It took a good amount of time to get home.  Finally I could see my daughter.  I could put on comfortable clothes.  I could drink that good coffee.  The lack of sleep did not diminish my joy upon arriving home.

It did however allow me to sleep for a few days and things are returning to normal.  My head is killing me, school is happening, and I am just trying to keep up with life as it flies by!  I am thankful for my naps and my full night of sleep and for being with my family.  I hope that I don’t have to do anything like this again anytime soon.  I prefer the more boring life of therapies that help me get my mind and body useful again.  Now that I have the diagnosis, treatment can be coordinated and I can begin to get my life back on track.

Honestly, I have been home for seven days and I am still extremely tired.  I am resting, but the appointments have started and I have to try to make the most of my time.  I am still waiting to hear from SSDI, but how wonderful would it have been to have this diagnosis before having the hearing?!  Still, I hope that they see that I have spent this entire time trying to get back to work and right now it is not possible with my symptoms.  I am trying to not think about that as I head into the Fall season.  I am glad that I have direction for treatment.  It won’t cure me, but it will make my life a bit more tolerable and that is enough for right now.

Chiari Comfort

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Chiari Comfort. Look! It has pockets! (spring hair fading, comfy onesie, pocket for snacks)

In high school I was voted best dressed.  I knew the cuts, the fashion, the season, and I looked great.  Now, some years later, I find myself looking not for the perfect silhouette, but for the pockets!  I also love jersey knit.  No zippers? Yes! No snaps? Thank you! No buttons?? YES PLEASE!!

I have traded my mid-rise slacks for leggings and tights.  I gave up buttoned shirts for tank tops.  I gave up cocktail dresses for onesies.  I am not spending my days at work or performing so I have embraced clothing that I never would have worn before.  I have become COMFY!

I am that person that goes shopping in pajamas.  Why? I like wearing pajamas.  I will take a shower and put on clean pajamas before I go out.  I believe that the important thing is that I pay for what I pick up and I am fully clothed.

Chances are, the store is the only place I am going and I refuse to wear zippers and buttons unless I am required to look like I am functional.  So, when I go to church, I wear the buttons and the jewelry and the accessories because I will be spending a minute there, I may go out to eat, and I like to film on Sunday because I already look decent.

When I go to the doctor, I get dressed in “normal” clothes.  Unfortunately, I no longer drive so I don’t really go out anymore.  I used to enjoy getting dressed and taking myself out but I don’t have the money or energy.  I could find a ride, but I am kind of a homebody now, so I have traded in my fierce for fluff and I don’t regret it.  I can still get dressed up for any occasion, I can do makeup, I can do so many things…IF I FEEL LIKE IT!

I would say that the world should leave disabled people alone about how we dress, but really, leave everyone alone.  We all have our tastes and needs and I need to be comfortable.

If you have received flack about how you are dressed when you go to grab some eggs, just remember, they aren’t paying your bills or buying your clothes so don’t give them the attention they demand of you.  You got up, you went out, and you are taking care of business!

Go forth, in your pj’s.

Tough Pills

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Chiari A tough pill to swallow.

So, one of the most interesting things I have learned is that while Chiari is not the cause of all of my issues, it makes all of them a little worse.  However, the interesting thing is that until the Chiari became symptomatic, I have very few serious health issues.  I had an injured knee that is still functioning on grace and prayer, I also had the issues with my deviated septum and the fallout of needing my tonsils removed.  Otherwise, I was active, healthy, and living my life.

After the initial diagnosis, I had a few restrictions.  Seventeen days later at the neurosurgeon when the diagnosis was confirmed and surgery was scheduled, we went through a long list of things I would probably never enjoy again.  Here are a few of those things:

  • horseback riding
  • weight lifting
  • climbing
  • kickboxing
  • sing opera

Abysmal!

However, once I began to heal, I began to hope.  I was getting stronger everyday, I got a gym membership.  My memory was failing but I had enough family and technology to keep things together.  Then I started getting weak on my left side and from there, much has gone wrong.

The seizures have the largest impact on my life right now as they are quite uncomfortable and they are the source of the memory outage.  at first the seizures were small enough to where I was beginning to doubt my doctor.  Then my stepdad saw me have one in my sleep, and I had one in the pool a few days later.  Now I was not allowed to swim, drive, shower in the house alone, and a few other things.

Ended up in the ER with pulled muscles from my ribs to my hip on the left side.  The night seizures are violent.  They always end in pain, confusion, and long periods of dead sleep.

How do we come back to Chiari?  The headaches.  When the headaches are worse the seizures are worse.  The motion of the seizures can make the headache worse.  It is a cycle I really don’t wish to see play out.  We cannot say what is causing the seizures until I get my study done and maybe at that time they will be able to figure out what started them.  However, if they can’t, I still have to move forward. So much of what has happened and what is happening aggravates symptoms that I live with almost every day.  My herniating tonsils lead the charge against my body and whatever is left up there is still angry about losing to the while-coats.  I did not realize that people lived in pain until I lived in pain.  It is quite different than any other pain.  I know other pains will go away, even if they are acute or last a few days or weeks.

The headache sits.  At times heavy and at times light.  It is difficult to accept that this might always be how it is.  I may be in that percentage of people who get worse after decompression surgery and it isn’t anyone’s fault, it is just how it turned out.  I have spent the past two years in therapy trying to figure how to accept is and it is truly a ginormous pill to swallow when I have to say that we really have a few words and no idea how they are connected.  I just know that in the end, whatever happen will probably disturb my headache and I won’t like it but I will likely survive (based on my survival of every previous incident).

I hope that if you are going through a process that seems impossible, try to make sure you have really accepted the range of possible outcomes.  It is almost impossible to move on in life when we fight the truth, even when it is painful and it hurts.  In the end, the truth is what it is whether it is accepted or not.  It is harder to deal with a lie and heal and come to a new normal.

Sometimes you will have to open wide, take the life medicine, and drink a LOT of water afterward!