Trapped Tears

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Trapped

I have never been overly emotional.  Not that I don’t have feelings, but I don’t believe they are for display to the general public.  Getting through my childhood meant knowing that there was no time to stop and cry just forward movement in time.  There is no time to cry, no time to mourn the bits and pieces of myself lost along the way.  Eventually, the tears dried and there was no feeling beyond “uncomfortable”.

When I discovered that my past and my present were both contributors to my seizures I just couldn’t figure out what was so big that it could cause my body to malfunction.  I read up and I have lived a colorful life, sometimes that color way grey or black, I don’t often think about that.  It was thinking about me though.  Well, seeping into other parts of my mind.  Pain was often a trigger as was any strong emotion.

I have just begun to allow myself to cry when I feel something.  Granted, the alternative is having a seizure until all of the stored energy behind it can be released enough for me to go into a daze and fall asleep for a day.  I have not stopped all of the seizures or the auras, but knowing now that it is safe and natural to cry has made such a difference in my life.  I usually still have some symptoms, but they aren’t nearly as strong as they would be if I kept my emotions in.

Last Monday I went in for conductive nerve testing on my lower extremities.  I relaxed as he probed my muscles for almost an hour, I was in excruciating pain.  He almost seemed alarmed at my ability to stay still and compliant even while yelping in pain.  Then he decided to do my pelvis, my butt, and my lower back and it was another 20 minutes of probing and pain.  Everytime he asked if I was OK, I said I was because I need this test finished.  My pain doesn’t override the need for results (at least not in my head).

When I got to the truck I could barely move and my mom had to help me into the truck.  I got buckled in and rivers flowed from my eyes because I could finally express my pain in a safe space.  I ended up going home and sleeping and only going to doctor appointments.  I am almost a week out from that experience and the silent pain of the past clashed with a medical procedure and produced a super-traumatic moment.

My hope is that more people will be able to understand that feelings can be locked away for years and there is no shame in being shocked by their re-emergence or in going to therapy to deal with them.  Feelings are natural, even if they are uncomfortable and if you are like me you will have to ease into some of these conversations with my therapist, but being able to deal with even one feeling is a burden lifted and that is the goal.  Eventually, I want to deal with my issues in a healthy way without the help of a therapist.  Until then, I will stay in therapy, though!

 

Therapization

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Therapy

An important part of my journey has been going through therapy regularly.  I began seeing a new therapist this year to work on different issues and it has been an eye opening experience.  Of all of the therapy I have been through, I have never dealt with the trauma in my life.

I could write a series with a prequel about that life, before I became “Michelle” and embodied a new persona.  For the last few weeks, I have been digging up the bodies that feed my mental rose garden.  I have been examining the foundation of my life and poking into the cracks I have ignored for years.

Last week, I left and my mouth and cheeks broke out into a rash.  That is the level of toxicity that exists in my mind.  When I speak of it, my words contaminate my mouth and face.  They blur my vision and all I see is that time when I was helpless and that feeling has lasted the test of time.

Yesterday, my foundation was demolished.  There is a lot of me scattered about, lost and disquieted by this disturbance.  We left the pieces there for me to think about.  I am considering how to rightly divide who I am from what I was led to believe.  I am just trying to experience my sadness about what I now feel I truly lost out on.  Still, I keep in my mind that I have gained many abilities and much strength through that time that I use and need at this time in my life.  It is a blessing to be able to compartmentalize pain and many of these tests are quite painful.

Chronic illness and pain from the car accident and brain surgery are all ON TOP OF buried trauma.  However, the seizures have necessitated diving into the murk depths of my history and trying to stay afloat while I am dragged down by an unspoken pain.  The pain of an entire life exits my body as a seizure unless I can verbalize it, and then I have the seizure later or maybe not at all.

If you are in therapy about the unspoken, the unseen, or the unnamed I encourage you to work to dig out that pain.  You will experience it again.  You will be helpless for a moment, but then you can seize the event and replay it through adult eyes and understanding.  You may not get the closure you hope for, but hopefully you will regain the control over your thoughts of self worth and you will find your new happy medium in life.

Beautiful Seizures

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Sunday brought about an interesting interaction at church.  I went to the restroom and the stall door hit me in the back and I had a seizure.  Not the gran mal that everyone thinks about but it was a few seconds where time slowed to a crawl and I could feel the jolt of electricity in my brain and in my back almost simultaneously.  It began to spread down my spine and into my limbs as my head felt like a growing ball of energy until every sense was overwhelmed and I came back to reality.

In that moment I was thankful that I was already leaning on the wall and that I did not fall.  I did my business, washed my hands, collected my phone and shillelagh, and went to my normal seat.  I sent a text to my stepfather explaining what happened and that I was OK.  Then I went to find my mother to get the truck keys.  As I am surrounded by the praise team, I can barely make out the people, seizures make me so sleepy, and they are just telling me how good I look and trying to give me hugs.  At this point I am fending off hugs and I feel like nothing because no one sees what is really happening, they look at makeup and hair and clothes and by that I am judged.  To add insult, I am told to just accept the compliment…even if it makes me feel worthless I suppose.

I  made it back to my seat and stayed for the third service worship and asked my mom to bring me home and told her what happened.  She understands how it is to be unseen.  She dropped me off at home with my daughter and I got my makeup and clothes off and slept for almost a day.  I had to take five hours to go to a meeting about my book, then I went right back to sleep for another 10 hours.  Tuesday I work up to go to brunch, came home and slept.  Wednesday I went to bible study at 930, was home and sleep by 12.  Back up for church at 4, sleep by 9.  woke up this morning at 4.  Totally did my mew bible study.  Made a pot of coffee, prepped the second pot and went back to sleep by 7.  woke up at 10 and I and beginning to lose track of the days because I am getting up and going to sleep so often.  This is normal for me when I am having seizures.

The only part that really bugs me is that no matter how much effort I put into my diet, clothes, makeup, exercise, self-care, or anything else, it does not change the fact that I deal with seizures and they wreck my week.  They hurt my body.  I look good though!

I may have already written about this.  I may just be thinking I wrote about it already because it just happened a few days ago.  Maybe the topic is familiar.

I can boil it down to this: If I say I don’t feel good, commiserate with me like a good friend.  Tell me you feel the weight of my burden or that you are praying for me.  You can literally just pray for me RIGHT THERE!  Almost anything is less offensive than telling me that my corporeal appearance is flattering considering how I feel.

If you are in this position, call people out.  Let them know how little their words make you feel.  We have to show people how we wish to be treated and while it isn’t easy, it works.  At present, at least 50% of our church members ask me if it is a good day for a hug.  Progress is slow, but it works!

Fire Body

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Late last year my family convinced me to go to my PCP to talk about this nerve pain as it was becoming a nightmare.  I was put on Lyrica and I din’t step it up properly, so I ran out late.  Then there had to be a drug test and the holidays and approvals and I am now 11 days without this medication and my body has gone through withdrawal, which kinda sucks.

The most unexpected part was the night sweats.  I get the joy of changing my pajamas once or twice a night because my body is freezing, sweating, and wet.  Getting up to change is not just uncomfortable, it is like walking with shards of glass in my feet.  The added element of darkness makes this little ritual interesting.

I am actually waiting to see what my doctor is going to do.  I have decided that I am almost out of the withdrawal period, not sure I want to get back on that.  I am going back into nerve testing.  I can’t wait to describe that in painful detail! AGAIN!  I don’t think there is a problem with the nerves per se, but I also know that we need to figure out why the nerves aren’t feeling anything but fire.

At times it just tingles, at times it pricks, and at times it roars like a toasty fire under my skin.  Over time it has worsened and moved to both sides of my body and I try to just deal with it because what else is there to do?

Without decent insurance, it is really impossible to get everything done in a timely manner without bending over backward.  See, they put me on meds before taking images or sending me to the orthopedist.  After getting the MRI back, I can’t help but wonder if these discs that are bulging in the center have anything to do with the nerves.  If not, how do we deal with the neck pain?  This doesn’t even begin to touch the seizures (which cause pain) or the headache, I am getting two new neurologists!  I will have over 30 doctors!  Is that a record?  Probably not.

The problem with Chiari Malformation is that after the surgery, anything can happen and NO ONE wants to take responsibility or treat it because you have had your head opened up and altered.  After this there is no real reason why anything happens.  Could be this or that.  Prior to my Decompression, I never experienced fire-body, but I sit here today wondering what happened that my health has deteriorated so much in four years?  I exercise, I eat pretty well, and yet my body is in constant rebellion and pain.  I hope one day there is a cure for Chiari, then maybe there will be no cascading medical issues that are related to surgery.

Let us go into this new year more conscientious of people who are just in pain and remember to ask before you hug!

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!

Neck Pain

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The only thing that I hold comparable to head pain is neck pain.  My headache easily slides into my neck and spreads the painful love.  Almost as if my head is not large enough to contain that much pain so it has to go somewhere and the most logical place is my neck, I suppose.

I once got injections in my neck.  It was awful and I would never go back.  Sometimes the “cure” is worse that the problem and for some of us that just doesn’t work well.  I spend a lot of time wondering how I can relieve my pain without further hurting myself.  As it turn out, rest and ice can be very effective, but not always.  There are days that I just deal with it and try to keep my bad attitude to myself.

Many of us who have had decompression have also had a laminectomy and removing even just part of one vertebra alters the balance of power in the upper body and they also cut through the neck muscles to get to the part of the brain they need to work on.   This leaves people like with a giant 8 lb melon on my not-as-sturdy neck.

The most natural thing to do is tilt my head as it seems to take pressure off of my spinal column, but when I have a bad headache none of that really matters. The pain causes my neck to tense up.  From my shoulders to my ears I get a powerful tightening and at times spasms.  Again, ice and rest seem to be the best defense against the pain.

I must say that this isn’t really on of the main issues that I focus on because I lump it in with my head so often.  It is just another pain that I feel that in some ways I have gotten used to.  I am more surprised on the days it does not hurt, those days are more noticeable.  I try to enjoy those days a bit more.

Dysphagia

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Dysphagia. Broccoli stuck in my throat.

Yes, I spelled broccoli wrong.  No, I am not that concerned!

I remember the first time it happened.  I was sitting on the sofa, watching television, eating pizza and I swallowed and it didn’t feel like anything really happened so I swallowed again.  It was far enough down that breathing was not a problem but now I had a very uncomfortable lump in my throat that was beyond the muscles I use for swallowing.

Peristalsis was doing me no favors.  I was alone and I really didn’t know what to do.  This is where most people would begin to consult Dr. Google.  I am not most people.  I waited about 30 minutes while sipping on my water.  Then I realized that only science could give me answers.  I went to the kitchen and got ice water from the fridge and tried to drink a mouthful.  I could feel it trickle around the food (the cold helped).  Then I fixed a cup of coffee.  I drank some and felt the warm trickle around the food.

About 45 minutes passed before the food began to slowly move toward my stomach.  I was scared to death, so I didn’t eat anymore that night.  It didn’t take many of these episodes before I went to the doctor and eventually got a swallow study and it showed I had delayed peristalsis and occasionally food backed up into my sinuses or into my windpipe.  Further testing did not reveal any major defects, so I just have to be more careful of what I eat and the size of my mouthfuls.  Again, it was recommended that I have a procedure to enlarge my throat but it just sounds unpleasant.

There are times when my lips won’t seal around a cup and I dribble or I drink and choke on whatever I am drinking.  I am thankful that these are all issues that can be corrected with a bottle or a straw.  If drinking from a bottle I can’t really tilt my head back or I may get water in the airway.  This involves behavioral and lifestyle changes, but I am thankful for anything that doesn’t involve therapy or more medicine.  Not everyone is in this position.  At times it takes therapy or even surgery to allow for proper mastication.

If you happen to find that you are having an uncomfortable experience when swallowing do not hesitate to talk to your PCP.  Swallowing is a necessary body function and issues with it can easily lead to aspiration and breathing problems.  It might mean that you have to just make a small adjustment to life or there may be a more serious underlying problem.  I am not a doctor and neither are you.  This isn’t something I would wait on as choking on food is not fun and can lead to injury or death.  Go to the doctor.  Go.

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.

Nausea

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It can outlast most TV series. Heaven help you if you have a headache too. Everything will be annoying and stupid

Nausea

After the headache, or rather, during the headache a feeling stirs up and man is it the worst!  Slowly, a familiar feeling begins to intertwine with the headache.  The weird thing is, I was not use to feeling this feeling inside of my head as usually it was located in my stomach.  Nausea.

I do not know how to make people understand the concept of vomiting out of the neck, but that is what it feels like is going to happen.  There are days when the nausea is so bad that all I can do is drink ice water in preparation for the horrible events to follow.  It rarely happens now, but when my headache flares up with a double order of upchucks, it begins a cycle that is exhausting and once broken leaves me with an even nastier headache and no energy.

I try not to let things get this far because it is unpleasant for anyone around me and I lose the will to care about anything but feeling better.  I become so pitiful and needy and my family deals with it to a point.

Usually within a day or so I am back to a low level nausea that is doable.  I can’t say I like it, but I enjoy being able to function in some capacity.  To help me out on the better days I used to drink ice cold ginger ale, but I have cut way back in favor of flavored sparkling water.  I find that it helps with my nausea just as well without the calories, but if it has been more than 12 hours I drink ginger ale to give myself a bit of sugar and that helps my mood a bit, but I really try to leave it alone now.

I have decided not to use medication because it is controlled well enough with other methods, however I have used Zofran before.  When I needed it, it helped, however, it was at the price of being constipated.  So, it’s all about picking the ailment you can live with!

 

If you want to learn more about Chiari Malformation, please visit Bobby Jones CSF and look around their site for a plethora of information.  (I am not paid by them, I do volunteer fundraising and they have good info.)

Check out Chimera Pillow which was created to help me when I have my headaches and other issues.  It can be used in many ways and it comes with a ice/heat gel pack. (I am volunteer SpokesMichelle and blogger girl!)

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.

Searing Pain Of Chiari

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Searing pain of Chiari. Brain Science Fair! “I built a volcano into her head!

There is no pain that I have experienced that is comparable to the pain of a full-on Chiari headache.  I am always looking for a way to describe my pain so that not an ounce of hurt is lost on the listener or reader.  There are times it feels like the back of my head is going to blow out and I imagine that this is what it would look like if it happened.  Dignified, like a good science fair project.  Not a mess of gore or horror, but an amazing example of nature out of man’s control causing pain and not really caring.

Sometimes it just hurts and I am just trying to get through the day.

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!

Lies I tell Myself: VIII

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Lies I tell myself “I can climb three flights of stairs…”

I have spent a lifetime being active and while I have never done a proper pushup, I have always loved climbing.  Stairs, furniture, mountains, vehicles were all game.  There is a part of me inside that I call “Michelle Unlimited” or MU and she is unaware that I have lost the physical ability to do a lot of things.  She also forgets that things are hot or weigh too much.

MU still likes to do all of the things and I suffer for it.  In the MU mindset, I began shoveling out front and pulling up sprinkler lines.  I think spent two days recovering because I am not supposed to be shoveling dirt in the sun OR doing any type of landscape work.  As soon as I felt better, I tried to dig up a bush for transplant but was caught before I could really get anything done.  Of course I know better, but somehow in the heat of the moment I am able to convince myself that I will be fine if I just use proper form or drink water or whatever lie I am willing to believe so I can feel like my old self again.

One area that I seem to struggle with is stairs.  I grew up in a house with stairs and lived in one for a good portion of my life.  My apartments were upstairs, office is upstairs, everything I like is upstairs.  However, stairs are not the friends they used to be.

MU does not care.

Using a cane has made stairs even more of an issue because my natural inclination is to take the stairs and it’s just getting more difficult because I am tired.  It is a ‘tired’ that is becoming all consuming and I feel like I am drowning in reality.  The stairs seem to make things real, but I am more often floating up a building in the elevator now because I lack the strength to get up the stairs safely and I then have to take a few minutes and bring my heart rate down.

I keep telling myself that I can do it, but I just can’t right now.  Since I now travel with someone else, I am usually corralled to the elevator so that I won’t make the attempt at the stairs.  We know that my seizures seem to be aggravated by activity and the more strenuous the worse the seizures.   It is a little upsetting when something as simple as stairs is taken away and what used to just be useful architecture is now a barrier.  A thing that once held no meaning now represents a failure of my body.

Of course this is something that I am dealing with in therapy and I am trying to stop letting ability of my body and mind define who I am and dictate what I can accomplish.  Reading back over this I am telling myself that it is ok to be upset about losing some ability, but the focus should really be put back into how do I overcome or compensate for this?  I obviously can take elevators.  I realize that I am blessed to be in a city with the strictest building codes, so access for disability is almost everywhere.  I have the tools at home to maybe work a little harder to build up my strength to get up and down stairs, but until I go see the cardiologist, I will just take it easy.  If there is an issue, we have to figure it out first, and honestly, not having to walk up stairs is something that in time, I will get used to if it comes to that.

So much of this journey is having hope but being reasonable if everything goes wrong.  Having a belief system that I consistently study and read and having a support system that is large and loving is what keeps me going.  My family has known for months that I am getting slower and slower on the stairs, now I literally have to sneak up stairs if I want to walk up some.  The only stairs we have at home now lead into the pool or spa and I am not allowed to use either of those without someone there…and I need help getting up the stairs as there is no railing.  (Our pool was built for fun, not children or the disabilities that would later come.)

Maybe for a while I will just tell myself that I can take the stairs but I choose to take the elevator.  Then it feels like my choice, and sometimes the feeling is what gets me through the hard times.  MU just has to find a less energetic way of being awesome.

Chiari Bladder

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“you need to pee!” “OK. I-” “But you can’t!” “But I-” “Gonna pee on yourself” “If you just-” “NO!” Chiari Bladder

It is hard to imagine that a part of my body that I have had control over for my whole life is now working on its own.  I remember thinking I had an infection when it got noticeable.  I would have to urgently pee, then like, nothing.  Drip, drop.  It would happen many times over the day.  I sent to the urologist several times, there is nothing wrong with my bladder or my urinary tract.  It is getting bad signals from my brain.

The event that made this really fun is when I had a focal seizure and peed on myself in the kitchen.  I didn’t realize at the time it was a seizure, I just remember I was looking out the window, then my leg was wet.

LIFE!!!

I do take a medication now that stops the excess bladder spasms and helps with the incorrect signals, allowing my bladder to actually fill before needing to go to the bathroom but also keeping it closed when I was not going to the rest room.  Of course, the muscle it too weak to control stress incontinence and well, that is how it goes!

At 30 something I am getting used to the idea that my body just kinda functions how it does and honestly, this is nowhere NEAR the the worst of my problems right now.  I mean it it actually is close in proximity, but not in the grand dysfunction of other “body things”.

Writing about this is super weird because I am such a private person, but I felt so alone after my surgery.  After things didn’t go how we expected post-op, I was left to figure out how to handle it.  I found some good friends and the best thing they did was explain the underbelly of chronic illness.  They told me these things would happen, so while I hoped that it would take longer or we could prevent it I didn’t feel blindsided by the dysfunctions I experience.

So I hope that sharing my own stories helps someone feel like this is just a thing that happens.  It doesn’t happen to everyone, but that doesn’t make the rest of us feel better!  I also encourage others to share their stories because the more diversity there is out there, the easier it will be for others to relate and feel a little more “normal”.

Lies I Tell Myself: VII

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Lies I tell myself. “This is all a bad dream…”

There are days in my life where everything is so absurd that I am positive that I am stuck in a bad dream and I desperately want to wake up.  This past week has been full of them.  I was supposed to get a upper endoscopy and a colonoscopy and the day before I get a phone call that I now need a release from my neurologist because of my seizures and tachycardia.  From the patient point of view all I know is that when I eat my stomach reacts painfully, at times regurgitating food I ate hours prior.  Then when it empties it is like having a baby pass from my stomach to my small intestine.  From there it can sit for days…until it eventually moves into my large intestine.  It just grows until my abdomen is tight and painful.  I will spare the details of the end of the journey, but know that I would rather not eat than experience this everyday, all day long.  I have dealt with this for six weeks.  I had a seizure and I haven’t been quite right every since.

I have lost close to 20lbs, but have managed to add some weight on.  I don’t want to be sick-thin.  I am having trouble taking my vitamins and it my energy levels.  I have calmed down my level of activity at PT and Dance because I have been having issues and falling.

All of this seems unreal to me as I look back at what I just wrote.  It feels like last week I was living a normal life and now all of that is gone.  In reality, it has been almost three and a half years and I simply have recollections of feelings and notions of events that have no grounding in time.  Of the physical horrors my body commits all too often, it is the existential horror of not having a firm grasp on the passing of time is beyond my greatest fears.  I always wonder if I will recognize my daughter in ten years.  Will she stay twelve in my head forever?  Seems like I saw her yesterday but she has been gone for almost a week.  I literally have to go through social media and my memory logs and question people who I may have been around to figure out what is happening in my life.  I rely on my phone to tell me everything I have to do, when it needs to be done, where to go to do it, and all the people who are involved.

Still, every morning right before I open my eyes, I feel the stiffness of my joints, I assess the level of pain in my head and neck and shut off my CPAP and realize THIS IS MY REALITY and my dreams are only a temporary respite from my daily issues.  Every night when I go to bed, I pray that I wake up to something different…just not worse.

This is my reality that I have to accept again every morning.

My New Friend!!

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My Little Friend

I have not talked about her much (I don’t think) but for Christmas I was given a Shillelagh because I couldn’t find a cane with a handle that didn’t hurt the palm of my hand.  Eventually, I guess my stepdad found one that was genuine and the correct height, and he got it for me as I was using my canes more and more.

I was excited to get it.  I know that it was Irish in nature, so I started doing some research so that I wouldn’t be ignorant of the beautiful walking aid I received.  Turns out I received a weapon and I am keen to use it someday on that one person…

Anyway, mine is made of the traditional blackthorn and the club handle is a little larger than my fist.  However, the shape of it fits my palm and causes less pressure so I can use it for longer periods of time.  The bottom is thorny, black, and has a copper tip.  We have covered the copper tip (as that is a tip off of it’s weapon status and weather stability matters) and I try not to herd people with Shanaylah (her given name) it actually gets people moving when they decide to clog up hallways and other places.

One of the great benefits of having it is that I can go for walks at night and I am less likely to fall and I have gained a pretty good idea of how to defensively wield Shanaylah.  Prayerfully, that time will never come, I like peace.

Now I am pretty much always accompanied by my third leg and I am so thankful for it.  I know some people don’t like the idea of having to use a cane and I understand the feeling of wanting to just walk.  I have no shame anyway, so using a cane just allows me to live a little better than without it.

I know it is jarring to no longer be able to rely on a part of your body to behave as you have always expected, but at the very least, if you have to get a walking aid, find one that fits your personality and it will blend right in eventually.  The only way to take back control, it so assimilate this new thing into your life and control it for your benefit.  I don’t know if that sounds harsh, but I want so badly for people to know that there is no shame in doing what you have to do to live your best life.

Right now, I am a scared mess because I can’t control a lot of stuff, but with Shanaylah I am able to control my mobility and I have something there just in case my leg gives out so I don’t fall.  It is not what I wanted for myself.  I have been in physical therapy for about six months now and it has only gotten worse with the seizures.  Thank goodness I have a way to get around, and now it is awesome and a little dangerous.  We’ll see if they let me into the federal court with it.  If not, trust me, there will be a post about it!

Life On The Other Side

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Perspective Shift

In August 2018 I suffered a series of seizures that were seen by someone else of I was awake for.  The first rule after any first aid is NO DRIVING!  Which was cool because it turns out I have been having tiny seizures for a while…even driving or eating or swimming.  Thank God I didn’t ever hurt myself or anyone else.

As most of us who drive know, it becomes very easy to become a driving commentator or worse, a passenger/back seat driver!  It has now been six months and I have had difficulty adjusting to being at the mercy of whoever is driving me, but one day I had to sit in the back seat.  Having multiple cars allows me to sit in the front usually, but ole’ Yukon had a misfire so my stepdad picked us up and sitting in the back seat was very different.  As a child I loved watching the scenery roll by whether we were going down South or to the bank.

Suddenly I realized there was a while Las Vegas out there that I have ignored in favor of memorizing streets and geographical locations, zip codes, addresses, and everything I needed o get around this city for the past 23 years.   Now, I was able to focus on mountains in the distance and appreciate them, look at buildings, watch birds, and I was amazed at how much of the world I have blocked out of my mind.

I think this may (or may not) be a good analogy for my life.  For so long I was in charge of it.  I decided what I did, ate, how long I slept, and basically everything else.  I pushed my body through canyons, up mountains, on rocks, and I god my desired results.

Now, my meds tell me when I will wake up and go to bed.  They control my appetite.  I have trainers for my body and mind that tell me what to do, how often, and for how long.  I have a body that has taken control and tells ME when we go to the bathroom or have insomnia.  At first I fought every bit of this by doing more, working hard until I was exhausted.  Then the testing period came and I little control over my life, all the tests showed I was normal and that made this process more frustrating,

The seizure in the neurologist’s office is what gave us the green light to start treatment with some confidence until we can get more information.

*Update (because I forgot to publish!): I have spent some time in the emergency room after a seizure last Friday morning and life has only gotten more interesting from there.  I did not post because I was completely out of it and I don’t always schedule weeks ahead unless something is coming up.

I have been having seizures any time I participate in a lot of physical activity or even just talk or sing for a while. I woke up Friday morning and I couldn’t move.  At the hospital they explained that it was Todd’s paralysis (part of a syndrome, I guess) and it happens after a seizure and you are just kinda stuck there.  Luckily I had my CPAP on, but it was a terrifying experience.

I am back to PT twice a day and dance and choir and whatever else I need to do to feel good about my life.  If it puts me in a condition to get us closer to the answers I am not going to stop.

Ok, bedtimes!!

Lies I Tell Myself: VI

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Lies I Tell Myself: I don’t need to write that down. I’ll remember!!

One of the biggest problems that me and my neurologist struggle with is that in the heat of the moment, I don’t really remember that I have lost the ability to remember much, so I think I will remember like I used to, but later I learn the errs of my ways…again!  The worst partis constantly feeling bamboozled by my brain?

I have a phone that takes notes in at least four different ways, I keep a memory log (which I often forget about!), and I always have paper with me.  No reason I should not have access to all of the information I receive, but that old part of me just swears that we got this, meanwhile, my whole brain is on fire as I think too hard about what it was I forgot!

This process has been repeating itself since as long as I can remember…which isn’t long,  so I can’t really give an answer.  I suspect that it has been at least since the surgery, possibly since a little before.  Memory was one of the first major symptoms behind the pain and nausea.

My phone calendar is full of therapies, appointments, naps, meds, and more therapies.  I am trying to get better at remembering, but am considering having a pin made that says “if I didn’t write it, you didn’t say it”.  Not sure how people would take it.  I realize my inability to remember their super important information is anathema in their eyes, but I am not the person everyone remembers and wants me to be from 2014.  Trust me, if I could go back I would, but, that isn’t how it works, so here I am.  Thinking I am in 2014 in my head (because time hasn’t really moved for me) in terms of cognition and 2016 in terms of time.  I feel like the world went on without me when I remember that I forget.  Every time I remember that I can’t drive it seems like I was driving yesterday (I was not!) but it seems like it.

These are the worst because they bring up three years worth of misplaced emotions and fractured memories.  I can’t drive because someone drove into the back of my car as I turned into church to use the restroom.  Such a simple act changed my whole life.  Ruined my dreams, stopped and reversed my vocal progress, and made into what I am today.

However, the blessing is really in the fact that I don’t have to carry the weight of my emotional burden everyday because I just think I am on a day off from work or it’s the weekend.  It still has not permanently seeped in yet that I don’t actually work, but that is ok!  Things take time and hopefully as my life shifts I will just find a new “work” that I do and maybe keep a note telling me to write things down!

Top Shelf Pain

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Upgraded Headache

I admit that when I am in pain and I have to go to church or a meeting of anything important, I will put a lot of effort into my makeup.  At this point, I use Swarovski flat-backs to give a good 3D sparkle.  I have used up to three layers of under-eye concealer just to not look like I got punched in the eyes by lack of sleep.  I use enough foundation to secure a skyscraper and enough concealer to wipe away entire countries.  The I pick a vibrant blush and put it on my cheeks, forehead, tip of nose, and chin.  I blend it well, usually you can barely tell it’s there, but it allows me the pink “alive” look as I sometimes look like I have been sleeping for days (because I have). I use highlighter with reckless abandon; I need EVERYTHING to shine from some angle.

The last thing I choose is my lipstick and that is dependent on the colors I am wearing and how much I want to command attention.  I have about four shades of red that I love, a pink that is like bubble gum but looks great with Spring colors.  Purple for when I wear green.  Then all my special shades from just ‘sparkle’ to matte black.  I usually try to stay reasonable though as I do have to look professional more often than not when I bother to wear makeup.

Here’s the thing that people have a hard time grasping; I am doing it so that I can just feel better about the war in my body.  It has nothing to do with compliment fishing ot trying to outdo people.  I had people asking if I took clients?!  I have not done my makeup because I feel great.  People associate looks with health, and that is kinda natural, but it really isn’t any reason to say anything out loud.

People seem to believe that their thoughts on my looks or condition have some sort of positive affect on me and they just don’t.  I don’t care if you think I look nice and so I must be feeling better.  I don’t care if you think that I look like I am improving.  I have an agenda that does not include you nor your thoughts on anything.

Does that seem harsh?  Guess what?  Don’t care.  See, I have seen enough of people to know that the ones who really are looking out for me can see my tired eyes through the eye designs.  They can see my foot dragging no matter how well I try to hide it!  They ask me how I am doing or they just say hi and give me a hug.  They draw no more attention to me than any normal person wants.  On Sunday, yes sometimes I draw vines with flowers on my eyelids and I give myself golden freckles, I do it because it makes me smile at myself every time I see myself in the mirror or in a reflection.  It is actually great is it brightens up someone else’s day, but really, you don’t have to feel compelled to tell me and then directly correlate that to my health.

It is very possible that I am in the minority because I also cannot take a compliment.  Like, a gentleman at church asked me why I wear makeup when my face is naturally beautiful (his words, definitely not mine!!) and I asked him why men thought that they had the right to comment on how I choose to look?  I told him that he had a wife and SHE is who he can ask about makeup.  He said she doesn’t care about his opinion either.

Let it be a mystery.  Stop putting women, especially women with hidden illness, in the uncomfortable place of telling you to mind your own business.  Ask your sisters.  Ask your mom or wife.  If you get a sassy answer from them, DON’T ASK OTHER PEOPLE!  Find a different rabbit hole to dig down.  The importance of looks has been socially ingrained into our psyche and we can get very emotional if we really try to figure out why we are wearing Jazzberry lipgloss and not Hot Tart lip creme, you might open up some emotional scars, so just STOP!

Just in case you need some kind of answer, I will leave a few:

  • Because I am dehydrated and my skin looks like an arid wasteland.
  • Because I am in the point in my cycle where my face turns into an angry minefield of pus and devastation.
  • Because I FELT LIKE IT, WHY?!

Goodnight!

 

Have you tried-

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“Have you heard about-” “YES!”

I KNOW I have covered this topic before, but it is one that just keeps coming at me and so I will keep bringing it to the attention of all who dare to read on.

See, I have some cognition issues and memory loss, but I have not lost my (above average *ahem*) intelligence.  I am able to read Al Gore’s Internet like everyone else and I am often looking up studies and medical information.  I have heard about memory medications in testing.  I have heard about therapies being used to help with brain damage and PTSD.  I have heard about the new findings concerning how our gastro microbiome affects how we think when it is changed.

Chances are, unless you have Chiari or are in neurology, I know more about my body and what medical science has to say about it than you do.  Just like you know things concerning your body better than I do.

HOWEVER

Let’s get to the real problem here.  You somehow feel entitled to give me medical advice.  Somewhere in your lifetime, you gained the gall to tell people how they should care for themselves when you chose to not go into the medical field.

Now, I do have friends that are in the medical field in specialties that give them the proper background from which to draw and share information that might be beneficial to my health.  The thing is, they realize that many times, I need them to be my friend and NOT my doctor.  I need them to listen to how the pain affects me and tell me that they are there to listen to me.  If I do need to ask a question, I will, but they seem to understand that I have a team of doctors already working to help me.

Advice is usually appreciated only when asked.  Don’t be ‘that person’.  The one that I have been talking about the whole time!!!

*P.S.- ESSENTIAL OILS ARE NOT CURES!!!!

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!

Lies I Tell Myself: V

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Eggnog Lies

If I had only listened to myself, I would not be on the floor, writhing in agony.  I was at the store, and I saw it there.  Staring at me through the glass door.  The eggnog section.  It is only there for a few weeks and EVERY year I buy some.  EVERY year I am miserable because of it.

See, I am extremely lactose intolerant.  Drinking milk is like playing with matches in the forest during a dry summer on a windy day.  I know I’m gonna blow, but I do it anyway.

I get out my nice goblet, pour the thick, spiced liquid until my cup is full, and I tell myself that ‘this year, I will only have one glass’ and I think everything will be fine.  Turns out, one glass is WAY too much and then the bloating begins.  Almost immediately, my stomach filled with air that seems to be some sort of weird, sciency thing.

Next is at least an hour of misery as the angry eggnog bubble passed though every curve of my intestines until it builds to one of the greatest pains a human can experience from a glass of eggnog.

The rest of the story is as old as time.  After the nightmare is over, I swear off the eggnog because I know that it is the source of my pain.  I tell myself that this will NEVER happen again and maybe THAT is the lie!?

Of course, the year rolls around and it get cold outside again and I look into the dairy case and there it is in all its glory, eggnog.  I tell myself that unlike LAST YEAR, I am only going to have one small cup (just like I did last year) and I will be fine (which I was NOT last year).

It’s a weird thing about me, I guess.  Not too weird though, because apparently moy mom does the SAME THING!

I guess we’ll just try again next year!

Dance, Dance

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Chiari Dancer

In August I started dancing and here we are in December and things hurt.  They hurt all over.  I started physical therapy much later than I had hoped, but now look, I managed to make it through three services of the Christmas program and I am just so thankful that I didn’t make any super horrible mistakes.

So, a lot of people at my church know I deal with problems and they treated me like some miracle who grew my legs back and danced.  Really, I irritated my worse knee, pulled a quad, herniated a disc, and did something to my toe.  It took a lot of work, but it was no miracle.

I didn’t have any solo parts and nothing very complicated.  Any adult who cared enough to pay attention and follow instructions could have done it.  People get amazed at the wrong things.  I practiced and came to practice, it only makes sense that I am able to do what was practiced.  My body is a jerk, I am not immobile.

Maybe I am looking into this to hard, but I just want to be able to do things without everyone commenting on how proud they are and how amazing it is that I can do human things.  It is frustrating.  This is not the kind of attention I like getting.  I want to be the only one on the stage, singing, looking beautiful as I purr out a smooth melancholy ballad.  That is NOT where I am at in life right now, so, I prefer some anonymity.

I joined the dance troupe because I needed to feel connected to my body.  It has been everything I expected and I am surprised at some of my own weaknesses, but this gives me a venue to correct them and be in control of myself again.  I want to have my body respond how I wish for it to and to hopefully restore some of the grace I have lost in the recent years.  Often I wonder if this is the wrong reason to join a ministry, but I needed the ministry to minister to me through the movement of my own body.  Watching other people was not enough.

Here Is where I would normally say how much I love it, but I just can’t.  I am not a dancer.  I do not have the body nor the grace of a dancer.  I have two left feet and get lost in music.  I don’t like the last minute changes.  I have no idea what my motivation is when I am on stage.  It is painful all over my body.  I have so many reasons that I don’t like dance.  I think it has convinced me to stick with my own ministry.

The challenge is priceless though.  Can I make it through ten months of dance?  One full season?  Will I still feel the same way or will my feelings for dance evolve?  So many questions we have to ask ourselves!  I guess we will have to see.  I will try to keep updates posted.

The Log Of Memory

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Memory Log

So, I am in speech therapy again doing neuro rehab and I am just the most fun patient.  After discovering I am having some throat trouble, we got down to the business of remembering.

She discussed the difference between ‘internal’ and ‘external’ memory strategies.  I already do many from having family members who have access to my schedule and location and emergency measures and ways to try to remember names.  So, she is stoked that I am already all about recording my life, but she suggested a memory log.

The memory log is a special item that I have probably explained at some point but for the people in the back, a memory log is where I manually record notes on the things I do throughout the day.  I review this at night to help lock in memories.  I can also look at it again the next morning.  at the end of the week, I read through the week to help reinforce any memories that remain.

I have a beautiful book for my log and a very nice pen, but right now, everything is over and I am not doing anything but physical therapy and sleeping and eating, so I don’t know how boring these first few days will be.  The difficult part is remembering that I have the book with me and to make the notes.  No one wants to look like the one who is keeping tabs on everyone else.

I am not quite sure how much detail to go into.  I assume I will find a happy medium as time passes.  Currently, the biggest issue is remembering to write down what I am up to, but I know that will come with time.

Memory loss is not something I thought I would have to contend with before my child was well into adulthood.  It makes the world so much more interesting but a lot scarier.  It is like living in a video game or a movie.  My brain perceives or believes things at times that are impossible, but it completely forgets even well-documented events.  The brain is so amazing and wonderful.  I hope that even if I forget what is happening around me that I am able to understand the function of the brain and the malfunction of my own brain.  I never want to remain ignorant of how my health is coming along.

For now, I want to do everything I can to help myself and while I do my part, my neurologist can figure out the mechanism of the memory loss so we can get to the source.  For now, I will just record life and hope that it helps in the future.

Hope is what I strive for.  I hope I get better.  I hope others get better.  I hope we become better at patient management so that smaller issues don’t turn into life-long maladies.  When my PCP tells me that I should take supplements before looking into my diet and exercise, I have to wonder how many other people are stuck not getting help because they don’t know how to navigate the medical system.  If it is more than me then it is too many.

Right now I am in the fire learning how people get burned by insurance and doctors and eventually, I will share my inside knowledge with the world and we will institute changes to help head-trauma victims.  There are so many areas, but one issue at a time for now.

As I write this, it is Christmas.

Merry Christmas.

If you don’t celebrate Christmas, happy Tuesday!

Chiari Dance Lesson #1

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Chiari Dance Lesson #1: smile, it will hurt!

While I have a ministry at church to attend to, I often like spending time with other ministries to become familiar with how they work on the inside so I can be a better liaison when Helps asks for help from another leader.   I have done several, but dance is a beast of a different species.  The arts (IN MICHELLE’S OPINION) all lost some luster when I am trying to create someone else’s vision.  I can’t see choreography in my head like the leaders can and then, they want it a different way.  Then they liked the first way better.

Very rarely will I put myself in a position to fail, but here, I find myself poised to do poorly.  I lost my grace and balance.  I am like a duck out there, walking around all crazy, flapping my arms at times.  Pretending to know what I am doing.  I have no real technique.  I just want to be able to perform and do a decent job.  I look forward to what I will be able to learn and hopefully regain some control and stability in my body.  I would chicken out after Christmas, but I made a commitment and I wish to honor it.

Honestly, the teachers are quite patient with me, but I hate for it to be because of my brains.  I know each one of them fairly well, I wouldn’t say we’re friends because I don’t share secrets with them, but we are all used to working with each other under multiple circumstances.  We are all on decent terms, so, I will learn as much from them as I can remember.  Six more months of dancing with the group and then I’m out!  I was going to do drama, but apparently doing anything is drama for me, so I am paring down the things I plan to be involved with.  I don’t know where my health is going to lead me and I need rest.  I can’t be everything to everyone.

My goal is that by this time next year I have grown enough to rid myself of anything that is subtracting from my life without adding any value.  I suppose that means going through the phone again and deleting more numbers.  Life, right?

Anywho, back to my main point.  It has been fun and Challenging to get to understand the motive behind dance.  It has been a positive experience for my body and even my angry little mind.  I am more upset that I didn’t do dance when i was able-bodied.  Still, I am hoping that by the time my commitment is finished that I will have learned how to think, move, and feel like a dancer.  Just in case I ever need to cut a rug and don’t have scissors!

Lies I Tell Myself: IV

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Lies I tell myself: It isn’t THAT bad! I will be fine. “So this is what it is like to be dying a full life!”

It can be difficult to really KNOW whether the pain is normal or not when dealing with neurological issues.  It doesn’t help that pain is personal even in the temporal sense.  Five years ago, I WOULD NOT have been able to handle this level of constant headache.  I would have thought I was dying.  Today, it hurts, but I am just thankful I can function.

The problem is that sometimes I want to do more and I may enjoy it, but the next day (or few weeks) are filled with misery that can worsen as it flares up.  I HAVE noticed that removing a lot of the grains from my diet (under doctor supervision) my flareups don’t last as long as they used to, and I think it just has to do with foods that can increase inflammatory activity in the body, in my case, the brain.

So, while I pay a lot of attention to my body, maybe I need to change my mindset on my limitations so that I can still have a good time and accomplish things without taxing my body and putting myself at risk for injury or falling (my left leg will stop functioning if overstimulated).  I know I shouldn’t lift things over a certain weight, but I hate feeling like I always need help.  Is my pride really worth my health, though?  No, I don’t think so.  I have gotten better about asking for help, but I still try to do things I know I probably shouldn’t.  I just don’t want to feel un-able.  I want to be able.

The moral of this story is that pride made me dance like it’s 1999 at my daughter’s Sweet Sixteen and I hurt for days!  I had fun, and thank goodness she doesn’t have another big party for at least two years, so I should have recovered by then!  Don’t let this happen to you.  Don’t do it the Michelle way, be safe and just side to side as anything you break down may not be able to put back together and if you drop it like it’s hot, it will stay there until it is cold and someone will have to scrape you up!  Listen to the little pains and know the signs of being tired.  Then, do the right thing.  That is what I’m gonna start doing.  Best part, we can start right now and do some self care.

Feeling Hot, Hot, Hot!

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Chiari Burns

I have been cooking for the better part of 30 years.  From simple things like toast and how to make butter to cakes and cookies to candies and roasts and pies.  I learned how to make almost everything from scratch from bread to pasta to egg noodles, sauces and stocks and desserts.

As I learned how to cook various foods and use different tools, I was taught the safety rules of everything.  How to properly handle sharp and hot things were constant drilled into me from a child until I was a teen and began working in a restaurant.  I had to be safe because I used bread knives (which can cut you) and an extremely hot espresso machine.

Not a week ago I was boiling pasta and I just grabbed the pot handle, luckily I caught myself.  A day or so later, I was going to check the headlamp in our truck and I turned it on.  Now, I have worked on cars since before I had a child, and I know better, but with my right hand I grabbed the wiring harness that connected into the bulb, and with my left hand I GRABBED THE BULB!  Then, with my right hand I juggled the wiring harness to see if it was causing the sporadic outages until I felt a thousand suns on my left hand.  I opened my fingers and there was skin burned unto the bulb, so it was definitely getting changed.  I turned off the truck and the lights and went and got an ice pack.  Ever curious, I took my three screaming fingers and the ice pack back out to the tuck and grabbed the bulb housing (where I SHOULD have grabbed) and examined the coils in the glass.  They weren’t perfectly aligned and some look like they somehow got turned around.  Made sense, it probably wasn’t getting a solid connection with twisted coils.  I examined the rest of the bulbs with the lights off and put the housings back together so we could go to the store and get the bulbs, then I replaced them later.

However, this is a serious issue that seems to keep coming up, especially in the kitchen.  I can take something out of the oven, take the oven mitts off and turn around and grab that dish.  I bought an aloe vera plant because I am a menace to myself.  I grab the handles of iron skillets that I KNOW have been on the stove cooking and it’s like I have no thought about it at all.  This is one of the reasons I have slowed down cooking is because I don’t want to really hurt myself or anyone who may be in the kitchen with me, so I try to wait for days when I feel good and someone can still be there with me to keep an eye on me.  I think of it as another small dignity I have given up for the good of myself and those around me.

This process of going through memory loss and all that we are doing to try to preserve what is left is difficult and we all have had to make sacrifices that really were awful, but needed to get to get this far.  We all plan to keep making them until we have answers and nothing else has to be given up!

It is Time Thirty ‘o’ Clock

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What is time anyway?

I am pretty sure I have talked about it.  Maybe not as much on here as on my other blog, but being unable to create stable, flowing memories has a curious effect on my ability to place things in time.  I have a difficult time putting memories in order or even knowing if something was a few days, weeks, or months ago.

This is something that is lightly addressed by my doctors as I suspect there is very little they can do for me in that respect.  I am not creating mile markers in time.  I can still tell what time of year it is by the sun, but what does that even mean in the context of real life?  I have to live by a schedule that I loved at some point but now I feel like it is a burden.  What if my body does not FEEL like getting up and going to another appointment.

Doesn’t matter because I have to go anyway.  I often am waiting 2-6 months for appointments, so when they come around, I go even if I feel like death is nigh.  The rate of descent news from these visits is probably around 40% because most of my doctors are pointing their fingers at my brain and my neuros are scratching their heads because I am not a textbook case of someone who has chiari and a normal decompression, I had problems before I ever came in, I had already felt the boggy breath of the reaper as my brain exploded into my neck.  Am I rambling?  Sorry!

In the end the appointments are necessary to make sure that the doctors, my family, and I can be on the same page and collectively understand what our treatment options and expectations are.  Not having a regular schedule beyond church and doctors and naps is probably detrimental to my health.  We are working on it.  It is a little harder now that I can’t drive.  However, know that you are not the only person going through this.  If you have ha a major trauma and you can’t get it together, THIS IS YOUR GRACELAND!  I feel you.  I too am tired.  I too had med-head.  I too need to take 2, sometimes 3 naps a day.

If you can’t figure out why it is so hard to get it together, I can be the first to introduce you to brain injury,  Either by book or by force.  No one, not even these prominent doctors can truly understand how the brain and mind function, however they seem to be able to spot when it is not functioning well. You may think many people fake their symptoms, but you’d be surprised at the number of improperly treated brain injuries.  (This can either be from patient refusal or from under trained doctor who cannot spot the signs of abnormal cognitive behaviour and speech and they just give them a mental health stamp and never look at the brain as the cause).

That’s not true! You yell at me!?  I kept going back to the doctor for 8 months telling them something was wrong, and they told me I was depressed and sent me to a psychologist.  I went to that psychologist for SIX WEEKS trying to figure out the root of my hypochondria before I was told my cerebellar tonsils had herniated out of my head and into my neck and I needed immediate surgery based on my symptoms,,,you know, the ones the other doctors told me were in my head.  Technically they were, just they were now starting to fall out!

Especially in out intelligence we must consider how to humbly deal with the unknown.  The last three years of my life have remained largely unknown to me.  My doctor says that it won’t come back.  It is lost forever.  The people I have met, the things I have done, washed away as I open my eyes from sleep.  waking up every day, checking my phone to see the day and month.  My life is like a mouse treadmill right now.  It isn’t really going anywhere and the scenery doesn’t change.  I hope that this part of my life gets more interesting, sooner.

Lies I Tell Myself: III

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Lies I tell myself: I am just hungry

I think it is unsettling to have pain and not have a reason for it, so, here is another lie I tell myself about my headaches!  I just need to eat something!  I just ate?  Well, I didn’t eat enough!

It is crazy to think that eggs and bacon are going to fix what is wrong with me, but something about my memory problems gives me this daily dose of hope that things are going to work out just fine once I do a certain thing.  Then, when it doesn’t work, I am forced to accept that hunger was not the reason for my pain.  It is OBVIOUSLY some other thing that I believe I have control over.

Just wait, I have a whole purse full of lies that I tell myself.  I will keep telling them to myself because it keeps me moving forward.  I don’t want to lose faith, so I choose to believe that one day, one of these things is going to stop my head from hurting and I can just be thankful that the pain is gone.  Like, I would love it if God gave me healing eggs, but if He chooses to allow me to go through this insanity, at least it is interesting and full of plot-twists.

If you are struggling to keep afloat, remember that there is always the chance that pain can go into remission.  Whether you share my belief system or not, people have experienced pain relief through various methods and sometimes it is spontaneous.  If you don’t get the relief you have been searching for, don’t let that keep you from enjoying however much of your life that you can.  if you can only do a little, do it well and be thankful.  I know it seems cliche, but thankfulness can have a terrific effect on how you view your situation and once you spot a little bit of good, you are likely to find more and more.

I hope you find the joy you seek, even if it takes time.  Know that I am on the same journey as are millions of others in the world.

 

I Am No Hero!!

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I am no Hero!

Going through the medical dog and pony show has been quite the eyeopener for me.  I now understand things about people in pain that I never even considered.  I also now feel the inconsiderate thoughts and words of others and it can be very alienating.  Some people are mean because they think it is funny, some because they don’t know better.  Some treat me with kid gloves or like I have become a fragile relic, some artifact that reminds people of who I used to be.

Then there are the people who feel like I have overcome some supernatural enemy and I stand in bloody victory waving my banner.  They weave a narrative about how horrible everything became then how it was miraculously transformed and I have earned some type of sainthood for enduring life.  And while I imagine is is great to bask in that feeling, I do not wish to be stuck in my own puffed up head as if I had much to do with surviving my ordeal.

I am no hero.  When they told me that I had to have brain surgery, I sat in the parking lot and wailed as if someone had died.  I called my mom and was in such a worked up state that she had to calm me down before I shouted that I had to have brain surgery.  I hear my daughter gasp.  Mom’s phone was on speaker because she was driving.  My daughter, who was on her way to a performance, had heard me lose my marbles on the phone.  I went to my sister’s house and cried for three days.  Sometimes she sat and cried with me.  Other times, she let me cry in solitude.

Hard to imagine Batman ignoring everything (even my own child) because he was told his brain slipped out of his head and was drooping into his neck.  He has his own source of pain though.  I suppose this is where we differ.  He has turned his pain into a mission and proactively fights crime.  I am good to be making it to my doctor appointments.  While I do some volunteer and advocacy work, I am not fighting for anyone else right now, I am fighting for me.  So that I can have the ability to speak out for other people who don’t have a voice.

Just imagine how awkward it is for someone to tell you that you are brave for living or a hero for living or an amazing person for living.  I feel like that takes away from people who are actually heros.  A firefighter puts his or her life on the line daily to save others from dangerous situations.  THAT is a hero.  Police deal with all sorts of insanity, knowing every day that they leave their house might be their last.  THAT is a hero.  Our service men and women willingly go out onto battlefields and too often come home changed physically, mentally, or emotionally.  THAT IS A HERO.

My neurosurgeon spent 6-8 hours operating on my brain with the full understanding that my entire life was in the care of his highly skilled hands.  HE IS MY HERO!  He got me out of there alive.

Still, I am no hero.  I feel that we shouldn’t use that word so lightly.  If put in my situation, most people would do pretty close to what I have done.  Deal with it day by day.  Try to enjoy the good times. Complain about the bad times.  Really, it is a dull existence that pushes me to want to become a hero of sorts.  I spend a lot of time with doctors, on the phone with insurance and doctors, and scheduling future appointments with doctors.  Not nearly as heroic as it sounds.

Don’t let that fool you though.

I plan to be a hero one day and use my abilities to assist my community.  Then I can accept being called a hero.  Living in pain is a life that many people have and they make it through.  They go through the same things I do, at times more and they aren’t being called heros.  They are often forgotten about.  Some are considered a burden and are made to feel ashamed about their condition.  I just happen to look “normal” and seem “normal” to many people and so I must have overcome some giant hurdle and I am now an inspiration.  I wonder if I am as inspiring when I haven’t taken a shower for two days and my hair looks like a rat’s nest and all I want is coffee and cartoons because my head is killing me.  Am I an inspiration when my attitude is like a fiery cyclone leaving only destruction in my wake?

No.  No I am not.

I do not wish to be.  I want to be Michelle.  A mom.  A minister.  A witty woman.  All of this other stuff that is going on is just me doing the things that I have to do to keep going.  I am not sure how to just give up and that is NOT heroism, it is simple perseverance.  I have to keep going so my daughter has me here to help guide her through life as well as I can.  That is the SAME THING that every mother does no matter her situation.  Sometimes I don’t do as well or go as fast as other parents, but many parents are perfectly healthy and slow.

Life would be easier if we recognized that it is not brave or heroic for going through a medical procedure, it is simply a part of some of our lives.  I would like to feel welcome and loved instead of having to live up to the standard of a hero.  That is too much burden to bear.  I am human and I fail.  I have moments where my faith is wearing thin.  The best are the moments when I can’t control what is coming out of my mouth and I would be considered ANYTHING but a hero.

So, before we celebrate victories we can’t comprehend, let us just treat each other well and be there in the victories and the losses.  Be there when the test results come back and aren’t good or be there in the middle of the night when there a tears of pain overflowing.  You will find a fragile human with issues that is not wearing a cape, but is wrapped in a blanket to help feel comfy.  There will be no soaring through the air, only splayed out on the sofa or bad, trying to stay in a position that feels OK!

While the sentiment is lovely, save it for the people who deserve and earn that title.  I am a fighter who is training to be a hero someday.

Chiari Faces: Mask Of The Day!

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Chiari Faces: Lovely Lady, I Can Do It, So Fun, I’m Good, Playful, The Truth

*This is the viewpoint of Michelle. If you take something in here personally, look up “conviction”.  I really just want to inform people and I sometimes just say it in a very direct way.  Stay real.

 

There is nothing like waking up and being able to go through your whole day without having to be fake.  Now, when I say fake, I mean doing anything that is not based off of the true emotion that I feel at any given time.

If I have bothered to get up and put on an entire face of makeup, it is because I look so bad that people will ask me if I am sick (or if I know I look terrible) and no one wants that.  So, I get up early on Sunday and spend 2-3 hours doing my hair and makeup (a lot of rest breaks) so I can at least feel good about the way I look.

Of course, that means that I am cured.

WHAT?!?

Yes, this is what people think.  I use a good layer of primer so that they can’t see how uneven my skin is when I put on my liquid foundation.  Then I blend a bit and add concealer because sometimes my skin hates me and gets blotches, and don’t forget about the under eye concealer that drowns out the dark circles that often grace my face.  Pink blush on cheeks, nose, forehead, and chin because I need to look like I have decent blood circulation.  Blend.  Blend.  Blend. Contour nose, cheeks and jawline because my weight keeps fluctuating and I need to look like I have some angles.  Blend.  Blend.  Blend.  All of this goes down my neck to my chest so I can be the same color and not have to worry about my face being so bright.  Then bronzer on bony structures.  Blend.  Blend.  Blend.  Then all of the eye makeup and lie-brows, which is where the most effort is put in as far as coming up with a theme and creativity.

As a rule, when someone comments on how “healthy” I look, I thank them for their kind words and let them know that it is really just makeup.  I don’t want people to get the idea that there is nothing wrong with me, but I also don’t want to look half dead.  I can blame a lot of it on myself because I do many wild and free designs with my eyes.  Still, I would love to live in a world that doesn’t pressure me to look one way or another.  That doesn’t make me feel good because I “look healthy”, and it doesn’t make me feel bad for “looking like I actually feel”.  Unfortunately, I think humans, like other animals, take a lot of information from visual clues to draw conclusions, so I am kinda part of the problem I guess.

I doubt that a day is coming where I will be able to go do things in my true ugly, splotchy-faced, racoon-eyed form and no one will take notice.  For goodness sake, though, just say “Hi” and move on (unless you have something to talk about) if you know the person is chronically ill.  You will greatly reduce your risk of saying something they may cry about later.

My Head Says, “Hello!”

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Hi Michelle!  How is your head?

It may be PETTY, but I am going here anyway.  Most people I know are aware that I have had brain surgery.  Many know I suffer headaches and other symptoms still.  Some actually understand the surgery and issues.  A golden few ‘get it’ and they are my favorite folks. (I want so badly to be sorry, but I am not.)

So, prior to my whole head thing, people would say things like, “Hey Michelle, how are you?” or “How are you doing, Michelle?” like normal folk do.  There has been a change in the greeting and I am going to be honest, it drives me to the point of unfathomable ire because it turns me into the very thing that I am struggling with.

“Hey Michelle!  How is your head?”

Uh, small and hurting, but what about the whole rest of my being?  You know, my emotions, my heart, my mental status, and every other part that effectively sums up “MICHELLE” is stripped away and all that is left is a head with a name.  I am more than just my head.  I know people WANT to hear that my head is doing fine, that allows them to infer that I am also fine.  The only answer I have left to give is that I am still alive; My head is still there and as far as we know, my brain is still in it.  THEN I AM THE BAD GUY!  When they were just trying to be nice and see how I was doing and you know, I shouldn’t pay that close attention to the words people use because sometimes they speak so carelessly…but THAT is the problem, isn’t it?

People speak carelessly.  Not choosing their words to comfort one another, but using words that betray their true desire; to get the skinny on someone so that they can either be thankful to God or whatever that person happens to believe in because there was a healing, or to question the validity of one’s faith or illness.

Then I told people I had balance issues, they thought nothing of it.  We’re getting old is what everyone likes to say.  When they see me with a cane because I fell or do not feel steady, then somehow my issue can be taken seriously.  Now that I have a medical aid, I am much more believable.  Now the focus is magically pulled back and a fuller picture can be seen.  Weird how that works.

If I come back without the cane, I am fine again.  Often, people do not take the time to consider the real situation of another person.  So, they will ask what is wrong, but they don’t really want to know if it isn’t good or gossip-worthy.

In closing, I want to say that if I am of concern to you, ask about ME.  If you are that concerned about my head, ask my neurologist.  Choose your words to interact honestly because I feel when there is callousness and fakery in your words, but I usually just allow them to hurt me because I am used to pain.

Chiari Insomnia

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Chiari Insomnia: The headache that never sleeps

My idea of a “real” headache has changed drastically since 2015 when I experienced the first of many unrealistic headaches.  The headaches I used to experience would be welcome friends today.  What pain meds am I on for it?  Glad you asked!  None!!

Right now, I deal with the pain through sheer determination.  The worst happens to be when I need to sleep.  I can be so tired, by whole body is ready for the sweet release of REM sleep and the feeling of a hot metal bit boring through my brain keeps me right on the edge of sleep.  Where any movement is greeted with a sledgehammer to the back of the head.  I feel like I am being held hostage and tortured by my kamikaze brain. It doesn’t care if we both go, as long as I hurt.

The morning after a night of this insanity is the freshest Hell on Earth.  People are annoying for no reason.  It’s hot.  The coffee tastes off.   My clothes don’t fit.  My thoughts are slurred.  Everything that comes out of someone’s mouth is oer stupid than the last thing I heard.  It devolves quickly into a mess that I care not to be involved with.

So, how do I cope with this kind of headache AND not kill every human?  Easy!  First, if I have been up all night, I cancel all of my appointments (if possible).  I can handle one appointment for a short period of time.  Otherwise, I limit my interactions to my family members (so no phone calls, texts, or responding on social media).  I can be honest with my family and tell them that I am not having a good day and I am irritated and annoyed and I am having trouble controlling it.  These folks will listen to what I am saying and give me the space I need to nap or watch cartoons, or just sit and be mad.

Unfortunately, we cannot always control our symptoms, even if we are doing everything right.  We still have the power (in many cases) to choose where we go and who we interact with.  I also understand that everyone doesn’t have a super-supportive family like I do, so it may be harder to find your voice or set your foot down.  This is my way but surely there are several other ways to handle post-insomnia irritation.

I ALWAYS recommend therapy because it can be a great way to get your feelings into the air so you can rationally think about how to deal with them with the guidance of a professional.  There are plenty of resources online to help deal with anger and non-medical means of pain control.

In the end, you may have episodes where you just get out of hand.  It is difficult, but grab a tall glass of milk while you eat crow.  Apologize and try to explain why you behaved in an unseemly manner.  Most people understand intolerable pain.  It may not qualify as “your level” of pain, but everyone knows their worst pain.  I am sure that someone out there will say there is no need to apologize.  I wholly agree, but there is nothing wrong with making the first step to reconciliation, especially when it is over something that can easily be forgiven and laughed at.

This life isn’t what we asked for and it probably isn’t what we want, but we all have a role to play in life and for some of us it is to be an example, a beacon, and an advocate.  Once you realize what you need, you will be able to help others obtain the same thing.

Also, can I sleep now?  Is this enough words?

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!

Put That Coffee WHERE?!

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“I use Coffee Enemas to detox and relieve all types of pain…” Michellex2plus “While I relish the thought of coffee in every orifice, my brain sags out of my skull and I don’t think they use enough pressure to hose it back in there.” “No problem” (In Text Message) S “wow” M “I know”

I am by no means famous or well known on the internet.  I have focused most of my social media accounts on Chiari Malformation awareness and just preserving the essence of my experience since my memory is so poor.  The account that I probably use the most is my Instagram (FOLLOW ME: michellex2plus) and so it is where I tend to have the most interaction with people about Chiari.

I post about my headaches and without fail here come the Snake Oilers.  They tell me that their concoctions will not only rid me of my headache, but make my skin brighter, restore my soul, bury my skeletons, slim my waist, harvest my crops, improve digestion, restore circulation, align the planets and get mercury out of retrograde, thicken my hair, and make my nails grow.

I WANT TO BELIEVE ALL OF THIS!!!

The problem is that this is some person out there who saw a hashtag that somehow aligns with the product they have chosen to push and they don’t care that they might be derailing the actual healthcare of people.  They don’t care that there is no scientific proof that essential oils can fix Chiari Malformation.  They don’t care that being bombarded by false hope is disheartening and tiring after a while.  I have spent almost 3 years with awful headaches and there is no medication they have given me that stops them.  Yet, some person out there thinks that a coffee enema is going to get rid of my pain.  If that was really a thing, I would have done it already, as I am often desperate for pain relief.

To make matters worse, many of us with chronic pain are on a limited or fixed income and still there are people out there who are willing to take your little bit of extra cash in return for something that might help you feel good in some way but may not do what you were told it would.

I love essential oils.  I have one of those sonic vaporizers for the essential oil, and I often have something coming out of it.  Does it lighten my mood?  Sure!  Does it make me smile?  YES!  Does it take away any physical discomfort?  NO!  Have I had someone some to me touting the “healing powers” of essential oil?  Yes!  I tend to school these people on exactly why essential oil can not fix a brain herniation or intracranial pressure.  Then I let then know where they can learn more about Chiari Malformation and how they can actually help people.  Last, I block them.  I have done all I can and they need to get it together without me.

I have suffered.  I have cried out in agony.  I have plead for the pain to end however it has to.  I have sat as day after day ticks by and I lay in the same place drowning in the misery of a sea of hurt.  I WANT the easy answer.  I WANT the oil to take away my pain.  I WANT kale to make me whole.  I DEEPLY DESIRE the relief that spraying coffee up my hind-parts promises.

We live in reality folks!

Most people on the internet selling you promises aren’t properly schooled in herbal remedies and are not as familiar with plants and their healing properties as they claim.  Even if they are, you should be willing to do your own research, have a reasonable expectation (JUST LIKE WITH YOUR DOCTOR), and understand any risks associated with what you are taking into your body.

The road is long and there are not always answers for us.  I have to tell myself this multiple times a week.  Shortcuts won’t always lead to the finish line.  Sometimes we will just have to tough it out.

 

Summer Melting

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Las Vegas Summer!  I am melting

 

Living in the desert has some very distinct disadvantages for me right now.  I have lived out here (for the most part) since 1996 and coming from New Jersey, I love the winters here.  The summer was always awesome too, until I had the brain surgery.  I had the surgery in December and I remember going outside in the mornings and being warm while my sister was bundled up.  After a short walk around the courtyard pushing the walker, I would come back inside and have to take off all excess clothing.  She told me I kept it freezing in the room.

I don’t remember much of any of the previous summers, but TODAY was hot enough to melt my thoughts (around 115).  I rapidly lose energy and focus in the heat so I tend to plan my events so the I am not outside for a long time.  I have to have air conditioning in a vehicle or a building.  I can overheat from doing my hair.  Or getting dressed.  It feels like such a horrible weakness to have in the desert.

I try to remember that I am blessed to have refuge that not only has AC but also cable, food, and a pool.  It is easy to focus on what I have lost: I have the lost the ability to endure extreme heat.  As I learn my life lessons, the positive things that have remained or increased have begun to outweigh the negative things.  In reality not much has changed except my perspective.  Turns out that was the most important change that could be made.

Still, at times I find myself in the broiler that is outside and I am amazed that the human body can withstand such brutal temperatures.  People have lived in the desert for many years in all kinds of deserts.  I am so thankful that I had the opportunity to endure the heat and work in it, and hike in it, and all other manner or activities I did.  I enjoyed those times so much and I had an awesome tan!  Now, I am thankful that my life affords me so much air conditioning, cold water, and frozen treats.  I have what I need and in this world that is a miracle.

If you find yourself in a situation that is not awesome, take the time to consider the good things.  Now, this is not what you should do if the situation is dangerous or abusive, but if you are just in a funk about life or a thing, take time to consider the things that you have that seem inconsequential but make life so much more convenient and comfortable.  If this exercise doesn’t even come close to touching your issue, I recommend talking to someone (from a trusted friend to a therapist) who can help you get the assistance you need to live a happier life.

Should you see or talk to someone who is in a terrible funk about something, let them vent and blow off steam.  Many times people just need to direct their excess energy outward and then once they let everything out they can think a little more rationally.  Never undervalue someone’s feelings or their current reality.  Each of us has a unique life experience and each person has something that they struggle with.  Some people have multiple things.  Lending a caring ear and validating that the person has a complaint (even if you don’t agree) allows a person to feel heard.  I often spot my own flaws in thinking when I vent.  Hearing my thoughts out loud helps me to make sense of my feelings.

I wish more people could understand that my body does not tolerate heat well.  I don’t want to be the only person sitting inside at gatherings.  I don’t want to be the one who avoids get-togethers because they are outdoors and I can’t do over 75 degrees.  I hate that temperature is something that influences everything from household comfort to vacation destinations.  I am not trying to be the center of attention or bail out on my friends.  I know I LOOK fine, but I am not OK.  I have symptoms that control most of my life, from walking to the going to the restroom.  Life for me is a little crazy.  So, if I am going to take the time to get ready to go out with friends, it is because I have been guaranteed a nice cool place to rest.

Seasonal Body

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My Summer Body is Snowman Shaped.

I tried on my swimsuit from last year.  I have not gotten smaller, that is for sure.  A stick in my side is my weight right now.  Not because I want my summer body (which has been missing for AT LEAST 15 years, put out an APB) but because I can feel the excess weight on my knees and ankles.  Still, I won’t lie, I would love to have my awesome body back!

So, recently I took a Functional Capacity Evaluation.  Normally they are used for worker’s comp or for return to work after an injury to make sure that the employee is sufficiently healed and strengthened to safely do the work they were doing.  In my case we are using it as a baseline.  I obviously can’t go back to being a warehouse worker, however I was happy to learn that physically I am able to do some kinds of work.

More importantly, it has given me a baseline to use to put together a workout that is good for tackling the areas that I really need to get stronger.  The test is laid out in such a way that I can easily read it and pull information to use, so I think that is probably what I will do.

More importantly, I want to send out the message that it is ok to want to change your body into something healthier.  It is ok to be happy with your body just the way it is.  It is ok to make little or great changes as long as you talk to a doctor first and do it safely.  There are so many messages out there about how you you should look, but focus on how you want to feel.  That will get you much more satisfaction from whichever route you choose.  Know that I am standing (sometimes sitting) behind you, rooting for you and your continued success!

Splitting Headache

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It can be hard to accurately describe one of my headaches to someone who has never endured an injury that resulted in severe nerve pain.  In the spirit of spreading awareness, I would like to share some of the descriptors that I use when dealing with brain pain:

  • feels like my brain is being pulled out of the back of my head
  • feels like someone is shoving my brain into my skull
  • feels like a slow-motion explosion is happening (for hours) in my head
  • feels like a ball of magma at the base of my skull dripping electric magma onto my spine
  • feels like someone shoved rebar up my spine and impaled my head and is pouring concrete in my shoulders
  • feels like someone is blowing a balloon up in my head
  • feels like being hit by a baseball bat/2×4/pickaxe/sledgehammer/grenade/lead pipe at random intervals
  • feels like the hand of God pushing my head onto my shoulders
  • feels like my brain is leaking into my neck

I could go on and on.  There is not a pain that I can’t accurately describe using colorful language.  At times I use more color than at others.  I could never use just one set of words to describe the pain that graces my grey matter as it continually is morphing from one misery to another, afflicting different body systems as it crushes my faith in endorphins.

If you can’t imagine describing your pain in this kind of detail, count yourself among the blessed.  Hopefully that means you have never had to experience this pain.  If you have a list similar to mine, I offer my condolences.  There is no one who should have to deal with pain all or most of the time.  Unfortunately this is not how the world works and some people live with their pain as a constant companion.

So, if you run into someone or you know someone who has chronic pain, don’t even pretend to understand the level of hurt they endure.  As much pain as I endure, I don’t act like I understand the pain of others, I only know my own pain.  Just offer your support and comfort.  Chances are, any advice you have to offer is terrible or they have tried it and don’t go on a quest to fix them.  Just support and love.  Trust that you probably don’t know more than their doctors, so no medical advice!  Just support and love.  You would be amazed how encouraging friendship can be.

A Fuzzy Friend

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I am human and I love dogs.  I have been this way my whole life, but right now, I am not in a situation that allows me to have pets.  That is probably good for now, considering I may not have the energy to properly care for a pup.  That doesn’t staunch my desire at all, though.

I think that there is a part of me that wants to take care of someone else.  I want to be the caregiver instead of the cared for.  I suppose I would love to see myself in the stronger roles in life.  Still, this isn’t the right time, so my dream will remain a dream.

So many people I know with chronic illness or pain have a fuzzy companion and I think part of it is also just having a companion that never tires of your voice and loves snuggles.  Humans are wonderful, but sometimes my neediness is too much for them.  I suppose a dog would enjoy me talking to them since they would have my full attention.

Forging relationships and trust with animals has always been easy for me and I just miss having that comfort.  As a child life was unpredictable and often frightening, but there was something about the dog that was reassuring.  He  offered and reciprocated love and compassion.  A love untainted by annoyance or anger.  Dogs are such precious gifts.  Cats are too, but I need more attention and affection than a cat is often willing to give.

Either way, I have to wait until I get situated in my own place again.  Then I can go down to the pound and rescue a doggie!

I am no doctor, nor am I a scientist, but I can tell you that your support system can also include the animals that help bring you peace and calm.  People are a wonderful blessing and a valuable resource when it comes to major life changes, but they are human and no person can take on everything.  Having a pet that helps to cheer you up or make you feel loved and safe helps bring balance to many lives and I think in the future I will benefit from this.  For now though, I am going to dream of the lil guy who will someday get 30% of my snuggles and love!

Plans

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Most people make plans for the summer and I suppose I do too.  Turns out, my plans are not always fun but they are quite necessary.  Like jobs, medical appointments don’t take the summer off so I am trying to enjoy the time I have around these visits.  The downside is that seeing specialists means that I scheduled most of these appointments in the Spring and they take precedence over every other event that crops up during the summer months.

Birthday party?  Not on a Friday, I have Music Therapy every Friday and it is tiring.  Anything on a Tuesday is forbidden since I have my regular therapy and I also use it as a doctor appointment day.  Sunday is church, family, and volunteer day.  We are now down to 4 days that aren’t even in a row.

Now, because I finally received my accident settlement, I was able to put together a week where I had a staycation on The Strip and I managed to live that good vacation life for 8 days.  It was wonderful to be able to take that break because although I will spend the summer being tested and evaluated, I won’t have any answers for a while.  I will still be in a state of limbo for a bit and that is just stressful.

Luckily, we have a pool and cable and air conditioning here at the house.  So, I think that while I can’t make it out of town or to all of the events, I still come out on top.  I don’t actually have to leave to enjoy a smoothie while floating on the water.  I am learning that every situation has a better viewpoint than I give it credit for.  I am a little jealous of people with the means and ability to do all of the things, but I am surrounded at home by the things people go out to find!  Fancy coffee?  Got it!  Hot tub?  Got it!  High-speed internet?  Got it!  Plus an awesome family is included!

I may be at home, but home is like a home away from home but still at home.

Stage 7: Acceptance

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WE MADE IT!  At least in blog form (right??)!

This is the last step in all kinds of grief (to the best of my knowledge at the time of writing this) and in my *PERSONAL* opinion it can be the most difficult.  See, I am not really at this step yet with what I am going through.  Maybe some things I have come to accept, but as a whole, nope.

So how do I know how hard it can be?  My brother was murdered when I was 18, I was stuck in my grief for about 15 years.  I got through all of the rest of it, but I had to be able to accept a few facts before I could move forward emotionally:

  • My brother was murdered 2 days before my birthday in an extremely violent manner.
  • There was nothing I could have done to prevent it or save him.
  • I can not bring him back.
  • I can not turn back time.
  • The future we planned will NEVER come to pass.
  • I did not die that day, it just felt that way.

That is only six things.  I lost myself for a long time trying to wrap my head around those six things.  That is a long time for six things.

With medical issues, I expect it to take time to come to acceptance of all that has gone on and may never end.  It isn’t as final as death.  It can be a lifetime of being in multiple stages of mourning my losses, however, the goal is to spend just as much time celebrating the wins.  The positive attitude is what is going to keep me getting through each day until I can accept all that my body has to offer, good or bad.

If you have been blessed to make it to this stage you deserve a standing ovation.  I can’t imagine what you have gone through to get here, but I do hope that you spread encouragement to those who are in earlier stages of grief and can’t seem to move forward.  We look to you as a beacon of hope to us all; that we can learn to accept everything that has happened to us and live a quality life without dragging the weight of loss around.

 

I just want to thank everyone who read all of these posts, or even just this one.  My goal is to spread awareness about Chiari Malformation and whatever else I can help be noticed for the community of people who aren’t “normal” in the brain, body, or both.  We may look nice and act proper, but we often suffer behind closed doors or even in public when someone must make a comment about “how” we are.  We are people with feelings, family, friends, bills, pain, love, humor, thoughts, ideas, opinions, style, and so much more.  Some of us have to figure out all of that all over again, but we appreciate the people out there cheering us on and encouraging us to do more than we ever thought possible.

Again, the article I got this from is here and I used it as a basis for my drawings and for this idea in general.  Let’s talk about out mental health so we can be healthy.  Grief is healthy when completed and not stalled.  If you are having trouble with loss, talk to your PCP or therapist, or someone in your support system.  There are a lot of ways that help can be accessed and we need to use the avenues that have been opened to us so we can help ourselves and the future generations.  No Shame!

Stage 6: Reevaluation Of Life, Roles, And Goals

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I feel like I am at this stage in most places but I am not fully here yet.  I do not yet have a definitive answer about my memory or some of my physical issues, so it is hard to set up rock solid goals at this point or know what to plan for in life.  Therapy has helped me learn to see this is a different way though.

The important thing I had to understand is that I am not defined by my abilities.  This is still hard to swallow some days, but it is important because if I feel worthless or useless, then life isn’t really worth living.  I am neither worthless nor useless, I simply have had to learn to integrate other tools into my life to help me.  As I go through the process of reevaluating my life, I am more concerned with people than things, quality than quantity, and love above all.  So, since I have value that I can add to the world, what role will I play to do that?

First, I am a mom.  I am not the best mom in the world (probably).  I forget a lot.  Still, my daughter is my heart and I want to be the best mom that I can be for her.  I love her to pieces, but my memory isn’t strong enough to keep her on track at school.  So my whole family helps me.  Now, “Mom” is a little different, so the role I play as primary parent has changed.  We get through it.

I am a minister at my church.  I have had to change how I do things there so that I can still be effective and of service to the church.  I don’t mingle as much as I would like to because people will hug me too tight or be wearing too much perfume, but I try to make sure that I call and text and keep track of people so they know I am thinking about them.  I still plan funerals, but I always make sure that I get everything double-checked.  I have had to shift some of my responsibilities, but the only role that got taken away was ‘worker’.  I like the role of being a provider, but even that has to take a back burner for now because in its place I have to be a patient.  That is almost a full time job and it is more work than one would think to juggle doctor appointments.

Goals have also changed drastically.  I had hoped to graduate with my Bachelor’s Degree in Music Therapy.  Now I go see a music therapist.  When it all came crashing down and I felt like I had nothing left the goals disappeared.  My means for reaching the goals I had set were gone.  Setting new goals without knowing what I can and can’t do is hard.  Again, therapy came to the rescue.  Reevaluating goals in THIS case means figuring out how I want to feel about my role in my treatment.  It is my goal to be an active participant in every step of my treatment and to advocate for my treatment.  Beyond this, I want to be an advocate for Chiari Malformation and Mental Illness.  A house?  Who knows?!  I need to get well first, that’s my goal.

This is an exhilarating place to be because hope is finally on the horizon.  I can’t make out its exact shape yet, but there is something there worth striving for after all this time of feeling helpless and astray.  I think this stage will probably last a while.  As I learn new information I am becoming more familiar with how to reevaluate all of these things because this process will take time and I have to remember to keep my mind flexible enough to find ways to overcome the obstacles that seem insurmountable.

If this is where you are, CONGRATULATIONS!  You have made it very far in a process that so many people lose themselves in.  Grief should never be the destination, but it is a journey to be respected, explored, and then left behind to draw wisdom from.  I imagine other people might be in this place for a while too because it takes time to establish your new role in life and the goals you wish to achieve.  It can take a lot of experiences and thinking to reevaluate life and to gain a new yet comfortable perspective and establish a new normalcy.

Definitely take you time with this stage as it will develop your new foundations and enjoy the freedom of creating a routine and lifestyle that work for you.  In time, you will pirouette to the last stage where you will find the solid footing you have been seeking.

Stage 4: Anxiety And Depression

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grief4

Was there ever a more perfect pair?  In my personal experience, depression digs the rut and anxiety makes you afraid to get out.  I have spent my life defining myself by my ability to accomplish.  The accomplishments themselves were not nearly as important as the ability to do it.  I COULD work on a car, I COULD landscape a yard, I COULD clean a pool, I COULD take 9 classes and work and volunteer and be a mom all at the same time.

As the realizations about my mental, cognitive, and physical status began to sink in, I felt like I sank into the earth.  Not able to do the things I was used to being able to do, I no longer felt useful.  The things I love became things I didn’t want to talk about or hear about.

I got tired of hearing that my friends were getting married, buying houses, going on vacations, living their best lives (*through my personal lens, which was very out of focus*) and here I was dealing with headaches, unable to use the bathroom normally, and unable to get through the day without multiple naps.

It was like the blackness that swallowed me in anger left me bitter and depressed and unable to see value in myself.  Then my eyes were veiled in bitterness and I saw value in nothing anymore.  Making it to the point where I felt like I was just existing was the lowest place for me.  Just the disappointment of opening my eyes everyday and coming back to the realization the ‘this is my life’ was changing my thought pattern and things were getting dark in my mind.  I couldn’t fix anything going on, so how was life worth it anymore?  So, I decided to seek help and get a psychologist and psychiatrist.

If intervention had waited longer, I might not have made it.

Interestingly enough, my psychologist focused on my anxiety.  If I was depressed about something I could get specific about, then she would turn to the anxieties surrounding it.  I have (as of writing this) been in therapy for 10 months and the one thing I always try to carry with me from therapy is that I am prone to try to repair and repair instead of looking for a new solution or viewpoint.  I am anxious to know if my health issues are going to be permanent but if they are, so what?  I have to learn to live with them.  This is obviously over-simplified, but I am always willing to at least try the methods and tools my therapist gives me to help look at my thoughts from multiple angles.

One way I do that is by writing.  If I am very anxious about something I will write it down and read it to myself and imagine one of my friends wrote it to me for advice.  Seems silly, but it works for me because I often feel like other people deserve better than I do, so it helps me put my thoughts into a more realistic perspective.  I deserve to be happy or safe or cared for just like any and everybody else.

Still, I have plenty to work on in therapy and I would not say I am totally out of this neck of the woods.  As my treatments change and we test and get answers, I will have other woes and fears.

Many people don’t realize that you can go through this whole grief process with every symptom (I have about 17) and after every disappointing specialist (I have about 14) because each new thing takes something else away that you now must mourn.  The feelings overlap and mix and can be overwhelming.  My support system and my medical team all keep a close eye on my depression and anxiety because I won’t be able to improve if I lose hope.

The worst anxiety I have is that I will have these symptoms forever.  Headache and nausea for the next 20 years is an unbearable thought.  However, I currently temper it by telling myself that I have made it this far without answers and whatever happens I have my family and my faith and I can cross some bridges when I get there.  I only have to worry about my headache today.  Tomorrow will take care of itself.

I am not saying these are the universal experiences of anxiety and depression.  I only know what I go through.  However you’re feeling it, I encourage you to seek professional help if you have feelings of depression and anxiety.  At least find someone who you trust to get your feelings out so they can be validated.  Depression is not a ‘phase’ in life, it is a stage that must be addressed when it is where you are.  Same with anxiety, it is a stage that needs to be addressed.

If you find yourself being the third-wheel of this strange pas de deux, try not to get caught up in their dance.  The spotlight burns your soul and turns you into a shell of your former self. Spend your time on this stage and figure out what is the root of your depression and anxiety and come up with a plan that will restore peace of mind to your life.  You may not get the diagnosis you desired, but there are people who have it worse in some way but have rediscovered the joy of living. I want to enjoy my life again and I want you to also.

Foreward

I know everyone is looking at my typo, but its just a bit of hastily thrown together words that I bonded to make better for my personal situation.

The foreword of a book tells about the intentions of the author and offers some insight that may help the reader better understand the point of the author. I am in the process of writing 2 books, the foreword has actually become important to me.

Then I look at my life and there is no going back. Even if someone offered, I could not go back as my brain and body don’t allow for they types of shenanigans I used to be into. I can’t work 3 jobs anymore. All I can do is gather my skill set, say a prayer, and move forward. There is no more past, all the doors have closed. All that remains are the lessons learned.

So, with intention and insight about myself and what I am able to accomplish I move in one direction, “foreward”. I continue to move toward a better understanding of myself so that I can appreciate my life as more than a series of difficult lessons.

Hope

Hope Spring

I called to schedule my follow-up with the neurologist after seeing my new PCP. I asked if I could be tested for Myasthenia Gravis and a blood test was ordered. I took the test right after leaving the neuro.

That was three days ago. Of course ever fiber of my being is hoping that we have found an answer. Again, that little flutter in my heart gives me hope that maybe we have discovered the final puzzle piece.

It will be another day or so before I get an answer. I pray that I have found an answer knowing that I might not be any closer than I was a week ago. I am used to disappointment, that doesn’t make it feel any better. I don’t even know what else to test for. Neither do the doctors. I feel like this is probably a last ditch effort without spending thousands of dollars that I don’t have.

I don’t know what will happen, but whatever it is, I will continue to move forward. I may just stop searching for an answer. I am tired. I don’t want to live this life. While I await the sweet release of death, I will keep writing about life.

Uni-spike Equine Michelle

I loved being in the limelight. I went on to play clarinet and I loved being chosen to do solos. I loved going to school for music and winning the scholarships we competed for. I was chosen to meet leaders of the city and all sorts of things.

There was a time in my life where I enjoyed being special. I am the youngest and my two predecessors were pretty “hands on” but I was more easy going as a child. I felt special when I was one of the four girls chosen to do the “Alley Cat” dance in first grade. I was the only one in my class who won the award for writing.

Of course I ceased to exist once my child was born (unless she needed the milk train) but I enjoyed that I was the center of her world. She didn’t think I was smart or witty, she knew I would give her food and warmth and comfort. While tiring, it is actually the best kind of attention as I look back 17 years later. Hahaha.

Eventually, she turned into a teen and again only pays attention to me when she needs food. I pursued music in college and I still love singing, then the brain surgery and all that goodness. Which brings us to the other day.

I met my new PCP, very nice, good listener, and actually took time to read all three volumes of my medical history! He has ruled out every theory except two that we are experimenting with.

Then we had “The Talk”

Every good doctor who is seeing someone with my type of issues should give this speech. They promise to treat you like family, work hard, but I have to do my part and there is ALWAYS the possibility that we don’t get an answer. That is a cactus we slap when we get to it.

I am hopeful. I think it is because I am just tired of going through testing and just wondering what is wrong. I will happily take what he thinks it could be, but first a sleep study and we wait for my follow-up appointment.

He then gave me the analogy in the picture. Most people have an illness that can easily be diagnosed and treated. A group of patients are zebras. They sound like a common issue, but it is a less common condition. This group is where a lot of people end up.

Then, there is a tiny group of people who have visible symptoms, measurable signs, and pages of medical evidence to support that SOMETHING is wrong, but no one knows what. So you get passed from one doctor to the next and life is limited because no one can put the many pieces together and make a diagnosis or declare a new condition.

We are unicorns. It’s great because if you think about a unicorn you think of this magnificent creature that embodies the beauty of a horse with the magical horn that proudly protrudes from its forehead.

I am NOT that kind of unicorn.

They are talking more about the likelihood of finding someone whose body and/or brain are so messed up that they get experimented on. We are specimens that science has not seen or tested yet/at all.

I have pain protruding from my head and I am no longer fierce and powerful. I am unsteady getting up, dangerous in the kitchen, and what I consider my beauty has long gone away. I am just a scared lady in a problematic body.

Still, if my status as unicorn helps make something easier to identify in other people, then something good came out of this situation and every issue was worth it. This is not a title I would wish on anyone. I am in so much pain writing this, just hoping and praying that we have found my answer. Of course, I will let you know. For now, i am going to go enjoy the morning!

Perpetuity

Be Perpetual

In my life I have learned that backward is not an option. If I walk backward it is more tiring, more difficult to avoid danger, and going back to the “comfort” that I refuse to look away from.

Turning around to face the unknown is a frightening prospect for people like me who aren’t fond of change. Still, my life has required me to look ahead at what is coming and it all seems to be going too fast or too slow, maybe it isn’t moving at all. My brain is now a terrified hermit who only shares my skull with a few other weirdos.

Still, the world is turning and my life goes on, so sometimes I crawl, then I walk, I begin to run, trip over a root in the ground and I even tumble forward! I suppose that knowing part of what lies ahead keeps me in perpetual motion toward my goal. To be free of the chains that have made this journey so difficult is the miracle I move toward.

To be free of the pain, inside and out is what is ahead. I can’t explain how I know this, but it is a feeling that grows with every step.

There are times I sit and rest, the journey is long and tortuous. As I sit, I think back to every rock I cut myself on as I climbed over it, all of the times I tried to give up but someone needed me. So many memories except the least few years. I only have some of that experience in my head. A lot of it is medically traumatic and the pain of degenerative disease.

Prepare for a bumpy ride and enjoy every moment of happiness because times will change. They will be good, bad, high, low, easy, difficult, and probably things I did not think of. If you aren’t prepared then I hope you love lessons! Life will teach you!

Be in perpetual motion. Walk ahead, think ahead, learn ahead, and when you think nothing is going on you will find yourself in the middle of a learning situation. If you stop to take a break, consider your next move, but enjoy the world for a brief moment, the way it is as it is in perpetual change.

On My Nerves; A Tale Of Pain

I am sitting, adjusting my position every so often. Trying to do anything that will worsen the pain that has settled in my lower back. Pinched nerve. It is like the body’s way of getting back at me for doing things me should ask for help with.

Standing up is getting difficult and my reflexes are considerably slowed. I cannot stand or sit up straight without feeling like my backbone is being pulled out. I believe the stress from trying to manage this pain is provoking seizure activity.

The process of getting any more answers lies with me in pushing for more testing and also self-tracking symptoms and activities. After a few years it has helped, and now I have a new pain to chronicle. Well, a new flair to a previous small issue.

The human body is made to work with multiple systems functioning together seamlessly and there are so many injuries that can be sustained that barely change anything in your body. Then some injuries seem so insignificant but change the world. A simple rear end pushed my whole life off course.

I am used to having my body in submission. Maybe not the skinniest but definitely in shape and active. I use to push myself to the limit hiking and climbing and going to the gym.

Then I got more and more weak, and that is the big mystery. As I get weaker, I have nerves pinching. I have no idea what is going on and in a way, I guess I don’t want to know. I am tired of a new diagnosis. They aren’t even surprising anymore, just another doctor, more tests, life restrictions, whatever it takes to have “quality of life” or something like that.

Its getting difficult to walk, but I have a cane. It helps somewhat, but I know that if both legs go, my arms are not going to save anything but my head. I have had a few close calls, thankfully furniture was there to break my falls. As time goes on it gets less frightening and more like an adventure. Maybe my muscles are developing memory that assists me in some way.

Yet here I sit tonight while my lower back feels like it had been under oppression for far to look and it needs freedom! I am currently sitting cross-legged, elbows on knees, back stretched forward a bit to take pressure off of the hurty place.

This weeks blog was going to be released on time with a funnier topic, but here we are, everyone. I am one pain away from hurting more!

I have spent a lot of time lying down, not writing. More revising my Bible study. Wrote tomorrow’s study. Spending time with my awesome sister.

Coughing hurts. In multiple places, but right above my butt was never even an the radar. I cough and it feels like my legs might fly off. I have a similar feeling between my shoulders and I think maybe something back there is messed up.

You know what really gets on my nerves, though? That there could be absolutely no reason or fix for what is wrong if they can find something wrong. As if I would waste my precious time imagining painful things. I remember when none of this stuff hurt. Now, I can’t imagine it not hurting.

Reader, I am TIRED of doctors. I have seen so many and gotten so few answers. This year is the five year anniversary of my brain surgery, the 10 year anniversary of my company, the 20 year anniversary of Tony’s murder and right now I just want to relax. I don’t want to be in the process of being poked as I mourn my and Tony’s lives or while I enjoy time with my family.

A trip will eventually be made because this affects some other systems and since nothing wants to work, I am a mystery.

My World Vs The World

There are days when it feels like everything is perfectly fine. I wake up, make coffee, sit out on the front patio, come inside and do Bible study.

I have clothes to wash, even more to fold, I have projects to finish. The birds are chirping. I feel pretty normal. Still, a sad hopefulness fills my heart. I know we don’t have long to decide to be better humans.

I spend my days physically doing less than normal because I am so tired and a lot of things are just painful right now. I try to go for walks when the weather is nice and I stretch and exercise. Instead of becoming stronger I have had to switch to lighter weights and shorter walks.

My world is seemingly not bothered by the Rona but I am aware that I am blessed to be in the position I am in. I am thankful that we have not had to make major changes. If this changes, I will be thankful for the good times and faithful when it is rough.

Reading the news is a daily affair. I have always been taught to know what is going on around me. We are a world that lit itself up and is surprised that it is alight! In my world, we understand how viruses work, mechanically and socially. I realize that I don’t have a “job” to go back to, but I am a business owner. I am making no money!

Then I think about how much of my work is equal to a life. Is it OK to take commissions and fittings again if less than 100K people die? For me, the first person was enough to finish what was on my plate and take in ONE long term order. In my world, people matter the most. Their health and safety are paramount.

When I add ministry to the pot, it gets more difficult. Before everything was set up for the pantry at church, I was taking orders and organizing food and supply distribution for people. It is what I do! I love doing it!

I realize my small actions will never fix the country, but i am glad to help and I am thankful that someone’s need is taken care of. They never know it is me, I stay behind the scenes, and I often don’t know who they are because I don’t ask for anything but needs and times to drop off.

My world is not invincible or the happiest place on Earth, but it is a world where I care and I am able to observe, help, appreciate, question, and nap. It is filled with love and little by little all of the bitterness is fading away.

Last thing I want to say is that if your life isn’t terrible right now, try not to feel guilty about it. There is now way you can control where you stand in a pandemic, life takes that away. I simply remind you to be thankful and enjoy this time. Take time to reflect on world events but don’t make them your focus. If you can help, do it! If you can’t, encourage people and try to be a positive force. We will get through this and hopefully we will come out with positive changes in government, accessibility, education, and healthcare.

Caring Has Been Suspended…

This past week has been a classic Chiari week. I am up at 0445 every morning tending to plants, writing and reading Bible studies. I am even getting some drawing and other things in. By noon, I am tired and my back is killing me, but the headache has been ramping up for hours.

It starts as a ball of pressure. Uncomfortable but I can deal with it. As the day wears on, the ball gets hot and eventually becomes a dull ache. This can last for hours if I am sitting down, but if I am standing up then the process speeds up. Eventually the entire back of my head is like mid-explosion for hours. The pain travels to my neck and shoulders. More on the left side but both sides are affected.

Next, sensation to my extremities dulls, often turning into a “dead” limb. It can’t function well for a few minutes. Then, the pain sets in and an electrical feeling runs up and down my body. At this point, the original headache has transformed into a monster that can barely function.

After about 10 hours of pain I reach a place where my cares are thrown out the window and I don’t think about them or dwell on them. I acknowledge them but I don’t do anything to help.

Left an empty package on the counter? I don’t care. I only made enough for myself? Don’t care. You need support? Please look elsewhere because not death nor disruption of life is on my list of care. The only things I care about is that my child eats and my level of pain. That’s it. I would apologize, but that would be a lie.

I am not sorry that my brain can’t focus on anything but itself when it is in pain. It is not something I do on purpose but when I am in the throes of pain, I choose to stay home and not spread my vitriol all over. This is the most responsible thing to do.

Recently I have been having worse and worse head pain and I need to schedule to see some doctors when everything calms down. I just spend my time trying to rest and not overwork or study too much.

So, when it seems like I just don’t care, that is the cold truth. I am probably pretending to look like I care, but be not mistaken, a care will not be found, seen, or looked for.

I aspire to break past this stage in my life, but it feels as if I have no control over that part of myself that hurts. I am in therapy and I am thankful that even if I don’t care, I will be able to someday because the pain is diminished or gone.

Lies I Tell Myself: IX

Bread Bloat….Keep lying to yourself, Michelle!

Like many, I am trying to navigate lockdown with the grace of a drunken pigeon. Although things are pretty calm, I have found multiple ways to express my anxieties.

My least favorite so far is gastrointestinal distress. Basically, my body goes into a dump mode where whatever is in my entire digestive tract either comes up or comes out. It can be dangerous if liquid is not replenished, but that comes up too. Just have to keep trying, usually calms down after 10-12 hours.

Next on my list is the rash. It is like super hives and the itching is almost unbearable. Needless to say, I have scratched myself up and I have learned to catch this response earlier so I can take benadryl and use calamine lotion.

I cannot forget the night sweats. I have bad to change my clothes multiple times a night because my body temp lowers and then I shiver and turn into a puddle. Definitely gross but not the worst.

My biggest and most dangerous foe? Bread. I eat the bread and I smell up like a balloon. My insides hurt and then I want to eat more bread to feel better (in my head) but I feel worse (in my body). I feel like I should be able to have the bread because I want it, but I know better.

Many people find it easy to tell me to leave the bread alone, but my will power fails me at times. Sometimes it’s a matter of not having the energy to fix something healthier. It has gotten more and more difficult to just accomplish little things.

I try not to feel bad about it. We are working to find out what is happening, but that Rona has slowed us down. I tell myself that I know better as I eat these yummy breads and that there will be uncomfortable side effects and I have no one to blame but myself. I don’t ever want to blame anyone else.

I will one day stop lying to myself about how badly I NEED that bread. How NO other bread can go with this meal. THAT NO AMOUNT OF BREAD CAN SOAK UP THE TEARS, GIRL. I make an effort and I fail, but identifying the reasons for my failure help me find healthier snacks or coping mechanisms.

If you like to put the things in your mouth that are bad for you, I understand the love/hate thing going on. I am not a professional, but i encourage you to seek a professional and to have a support group in your life.

In my experience, support groups can be found online, in cities, but the closest are the bonds formed in times of hardship and distress. This group of people can help keep you accountable to your own goals while not being judgemental about any shortcomings. I hope you all find that group of people who you love and who love you back…enough to tell you that you know that bread is NOT going to help but don’t complain later if you eat it. Those people help make all the difference.

I’m Good

I’m good. You good?

Being stuck in the house more than normal is getting weary. I have been writing everything but my blogs and I think part of that is because I don’t really want to remember this time in history.

So many people are dying and are sick and all I can do to help is stay home. I do arrange for people to be fed, but we have set up the church food pantry. Now my work has slowed down a bit.

I am streaming on Monday, Wednesday, and Friday and that helps me have something to do that is consistent and fun.

I do miss my regular writing so I am scheduling it in because I am excited to begin life anew after this Rona is gone. My biggest dream is to get into patient advocacy and champion better access to specialized doctors and services.

It is good to be back and I can’t wait to share the miracle that is the rest of 2020 telling you all of my business.

Social Distance

Socially Distant. Level: Pro.

So, life, amirite? I spent the beginning of this year scheduling tests and appointments and I have spent this morning cancelling or moving them to phone calls.

I ended up taking a break from blogging to do some writing for other purposes. Now, everything is with the editor and I decided to jump back in my blogs because I am really backing things up with writing. It seems this is where the breadth of my voice can be expressed.

I always assumed it would be music, and I write music and I and getting pretty good at ukulele, but I don’t write music as prolifically as I can write about the Bible or life. I hope I can be helpful somehow.

So, here in unincorporated Las Vegas everything is shut down except necessities and some people aren’t dealing well with being stuck at home. I understand. I remember when I first stayed at home.

It was prior to my brain surgery. I literally could not get out for around 9 weeks except for neurology visits. This is about 63 days. Then I couldn’t even go home from my sisters house for 4 months. This is about 120 days.

I’ve had about 1500+ days pretty much isolated. Most of the time when I am out I am at a doctor or at church. Pain has left me at home alone day after day. Testing and sickness have left me in the hospital for days.

Often I am blessed to be accompanied by a family member, but not all of the time. I have learned social distance as a way of life. I break the barrier when I need to, but I feel most safe at home. I am not judged at home.

The blessing in this is that hopefully I am able to stay away from COVID-19 as I am aware that I would not be high on the list of people to save. I think that is what frightens me the most. When it comes down to the wire, decisions have to be made and logically I understand that.

The hard part is knowing that I am expendable. Not by any fault of my own, but my medical history dictates that I probably wouldn’t do so well since my brain like to misbehave. It doesn’t take long for a fever to become an exponentially increasing headache while still not regulating my temperature.

I am not the only person who would get this type of assessment. Many of us are seen as bodies breathing air and taking up space and resources. Never mind that much of my able time is spent trying to help others, many who are completely able-bodied. I don’t matter because of my feeble body and luckily I have already put some measures in place because I don’t want it to come to that.

I have an advance directive and made copies. In this I have laid out the decisions I don’t want my family to make. I have a “do not resuscitate” order and I do not want to be hooked up to medical equipment for more than 3 days.

I have assigned roles to people and backups in case they can’t bear it. I wish to be cremated and my ashes given to my sister who has my wishes for the dust of my existance. That is the best I can do for myself and my family. We are all trying to stay home, but we we have someone who works trying to be careful and my mom who picks up food and meds.

Everyone in the house is high risk because of age or medical condition. The best thing we can do is practice social distancing. It really isn’t practice, it is performing social distance. For you sake and mine. For our families.

If you are having trouble adjusting to this new life please be patient with yourself and others. It literally took me two years of consistent therapy to accept being at home and not working, hanging out, hiking, or climbing. Life is fast and unexpected, so being home is jarring to many.

It is difficult for kids who have to figure out homeschooling and no longer have face time with their friends. That rubs off onto parents as frustration. Parents who aren’t used to their own child all day are toughing it out. Roommates and couples are forced to live with each other 24/7 as many places are turning to working from home.

Families are straining under the weight of life together. I sit an read the news and enjoy my time with my family because I am always here. They are used to my ever-present existence. With them I am tightly bonded, but I have been socially distant for a long time. It is very helpful to navigate life with others who have similar goal. I am socially distant and I have been for a while.

Welcome to my world, I hope your stay is short, but realize there is joy and life to be found here if you seek it.