The Monkey’s Phantom Pain

So, my left foot felt like it was being stabbed in the sole last night.  My left hip was in pain, and I assumed it was just my body looking for more attention.  As we left church, the pain became just a burning sensation when I tried to walk or it touched something.

I wake up this morning, step on the left foot and the whole thing hurts up to my ankle.  So, I stepped on the good foot, and hobbled my way through the morning until I couldn’t take the pain anymore.  While all of this was going on, I was blessed with cramps (yay, no baby!) and my headache began to intensify.  I already know that Headache + Cramps = FIRE IN THE HOLE!  I have already apologized to my family members in advance because I can’t get my shot until Tuesday and by then, the house could be on fire.  Not literal fire, but mass emotional upheaval.

I decided to take a nap.  I wasn’t sleepy, but sometimes the pain wears me down enough to just sleep.  Sure enough, I woke up, put down my left foot and now the pain has risen above my ankle.  It’s making it hard to walk and the shillelagh is becoming my best friend.

There isn’t much to do until I see the neurologist.  Four days away.  I suppose by the time you read this I will have already gone, but will have posted an update!  It is difficult to just wait but really nothing that can be done about it.  Most appointments have been cancelled so that I am at less risk of hurting myself.  I am hoping that I can get through these next few days gracefully.  Especially Sunday.  I plan to be at church no matter the pain.  I just have to keep my mouth under control while I am there.

The biggest issues are pain and boredom.  When I am in this much pain it is hard to focus on something enough to be entertained or distracted.  I suppose that is why I just try to sleep.  I don’t take pain meds and while some of my meds help with nerve pain, I can only take them so often because of their side effects and they weren’t prescribed for acute onset pain, so they aren’t the way to go.  I hope that the neurologist has a plan because otherwise, we gonna talk about getting a new brain.  There is nothing wrong with my leg!  I have had it tested.  It is fine.

For me, that is the most difficult part to accept.  I can handle my foot hurting because it was run over by a car or I dropped something heavy on it.  I cannot wrap my mind around my body feeling this way just ‘because’.  The nerves are upset today so they are in rebellion.  Well, that’s just great, we couldn’t save this for some other time when I was less busy?  I have no time for this nonsense.  Yet here I am, dealing with this nonsense.

How many people out there are dealing with this nonsense?  Nerves getting on your nerves?  ME TOO!!  Random muscle spasms?  ME TOO!!  One leg in pain and the other asleep?  ME!  TOO!!

Where do we go for respite?  I know not!  What I do know is that eventually, I will have some kind of answer as to what is happening in my body.  I have hope when I get answers that it will help others to get answers also.  We have to be the lights in the darkness because right now, medical science has so much to learn about the brain and we are the key.  We have to be willing to endure pain and tests and waiting and tests and surgery and tests and even tests!  I chose to disregard pain management because I don’t want a bandage.  I want my wound tended to and healed.  If that means it hurts, well, there’s always sleep.

I don’t expect everyone to make the choices I make because we each have to do what is right for our own lives.  If I were able to work, maybe my pain management choice would be different.  I did try it. Facet shots in C3 and C4 and I remember the sound of my tears hitting the floor as they moved from one area to the next.  I was strapped face down and there was a hole my head rested in where I could see all the feet and the floor.  I had to cry in silence so nothing would be damaged in the process.  So it isn’t like I haven’t tried.  Since opiates do nothing for my pain and they haven’t given me any type  of actual diagnosis relating to my nerves, I am going to just wait until we figure out the problem.

The nerves function from the neck down.  Anything I feel is originating in my brain.  See, that is where the hard part lies.  We understand the heart and how it is built and functions.  We understand muscles and bones and lungs, but we are severely lacking when it comes to knowledge of the very organ that holds our knowledge.  Somehow, this jelly-like pink blob full of wrinkles has control over not only the functions of the body, but also forms the very thoughts and ideas I am using to write about it.

We know that it can be injured and people can survive.  We know that injury to it can lead to change in personality.  We know that some people are just born with brains that seem off or different from the majority either in a good or bad way, depending on the difference.

We don’t know the actual mechanism by which it functions and malfunctions, though.  We have our theories.  Most neuro medications are based on the theory of how certain receptors work.  Then when something major goes wrong, we aren’t sure why, but that is what starts giving us insight.  So, I want them to find out all they can from my brain and add it to the existing information so that one day a cure for Chiari Malformation can be found.  Or a better treatment plan for ANY brain issues.

If your brain is being a jerk, know that I understand.  Don’t hate on yourself because of your brain, even if you really want to because your brain is special and the right doctor will help you understand why and how to help.  It takes time (I was decompressed THREE YEARS AGO!!) and that time may not be fun or easy, but you can help be the key that unlocks the mysteries of the brain.

Still, if you are able, take time to rest and sleep.  Journal and talk to someone who can listen.  Don’t let the pain overtake your beauty.  Let your hurt out and allow others to help you bear your burden.  Our loved ones often don’t know what to do, so it is up to us to inform them that we just need someone to listen and possibly make dinner tonight.  Also, LOOK FOR JOY in things.  Flowers, birds, puppies, trust me, this helps balance out negativity.  We get to choose how we handle even the worst of days.

Choose wisely.

Monkey Waxing Wistfully

When we are little we are all taught that though we share many similarities, each person is unique.  It is these unique qualities that make us all special.  We each have a mix of physical, mental, emotional, and intellectual differences that help each of us have a unique personality.  It is what distinguishes from others who may be similar, whatever “it” is.

Many of us work our whole lives developing the spark of talent that became apparent at some point.  Some of us never really planned to do much with the gift except enjoy it and work professionally in another area that we also happen to be proficient in.  We work, go home and have fun, and live.

I remember being entrenched in this lifestyle and loving it.  Even though I went to school for vocal performance, the ultimate goal was to become a music therapist.  I never intended on making performance my lifestyle, although I did a lot of performing because I needed experience to excel in a music degree.  Excel I did.  I worked tirelessly on arias and ear training and piano and guitar and theory and all of the wonderful work that comes with music.  So, while I had a steady job, I was able to perform both at school and on some nice Vegas stages.

I remember being upset at how the surgery was going to set me back at least a year academically.  Then the memory problems worsened and I have no choice which information gets wiped when I have a seizure.  Three years later I sit here and wonder what my life can become.  I have become too unique.  The doctors are wondering what is happening inside of this skull.

Right now being unique doesn’t feel good like it used to.  It was nice to be the only person at the BBQ who could sing an aria acapella.  It was nice to have the best shortbread cookies.  It was great having the black sports car.

Now I feel out of place.  I am surrounded by people who have no idea what I am dealing with.  It isn’t something that is easily explained to most people. Only a certain number of us (apparently) exceed the 99th percentile for functional intelligence.  How do I condense 3 years of medical progression into bite size pieces that people don’t compare to “losing their keys”?  The easiest is to say amnesia, but a lot of people then think that I can’t remember my childhood.  I can say a KIND of amnesia, again, most people aren’t even aware that there is note than one kind of amnesia.  If I say anterograde amnesia, they are not able to break down the word and understand it.

So, what can I do in this situation?  I am actually tired of explaining myself to people because why should I even have to?!  I have been explaining it to the same people for too long for them to keep asking me how I am feeling.  I feel terrible, just like every other day.  I am leaving my house because I have to get out but I am tired of the people.  I would rather go visit anything else.  A tree.  A statue.  A rock.

While people are busy assaulting my sensibilities, I am dealing with many doctors who are all pointing to my brain.  A neurologist who is determined to figure out why I am so special since there is no history in my family and this has been such a long deterioration that is speeding up.  A speech therapist that made a desk of sticky notes and is also concerned that my brain is weakening the nerves in my throat.  That could be the reason food is going up the back of my nose.  The dangerous part of this is that if my windpipe gets affected it presents a choking hazard.

You know what I got out of all this?  I may permanently lose my ability to sing.   I have felt it getting weak.  That is why I haven’t been back to the studio to record.  I am missing my voice.  In the bigger scheme of things, this is actually quite small (until you get to the mental/emotional self) and doesn’t matter.  We are doing PT/OT to help make life a little easier.  It won’t fix anything, but it helps keep me mobile and that is very important.  Must stimulate the nerves and the muscles they control.  I am in therapy to deal with the big changes happening to me and some past stuff.  I changed to a healthier eating plan, I do my home exercises.

No amount of my own labor can bring my voice back.  It is a pain that no amount of lyrical circumlocution can conjure a feeling for.  It isn’t like when my brother died and an extension of myself was gone.  Or like when I realized things were just wrong and life was NOT going back to normal; I felt like my place in society had changed from ‘contributor’ to ‘receiver’ and I felt lost in the world.  An integral piece of my anatomy used to play my instrument is not functioning properly.  I am sad in a way that I am not sure I ever have been.

When I got my tonsils out, it took 5 months to be able to sing again.  I gained a few notes on both ends of my range and I was thrilled to be able to use my pipes.  However, something is going on in my brain and this is just a symptom of something.  I don’t know if this will be it, or if they will unlock the secrets of my brains and get it back.

As much as it hurts, I realize that I may or may not lose my ability to sing.  I am prepared to deal with either of these outcomes because we tried.  I am trying.  If any loss leads to better care for patients in the future, then it is worth losing a voice.  I will make myself heard.  It may no longer be melodious, but it will get the attention of people who have the opportunity to get me where I need to go.  I love singing, but not as much as I love people.  I will gladly lay down a shield and pick up a sword.  This is my training ground.

I hold on to the chance that my voice will go back to normal, but if it doesn’t, then I will grow into what I am supposed to do next.  I can still enjoy music from other people.  I no longer want to hold on to pieces of me that can change or grow.  I will be pouty about singing for a while.  I will look pathetic as I lip sync to songs I once belted out.  I’m going to get it worked out and move forward into my next talent or ability.

If you are “losing yourself” it is ok to feel sad and it is natural to mourn any type of loss.  However, I encourage you to take the frightening steps forward that it takes to find new parts of yourself.  It might take time.  Trying uncomfortable situations.  We have not become so unique that we don’t fit in anywhere.  It just feels that way.  That is an appropriate feeling because some of us are going through some weird stuff.  It’s ok to spend time figuring it out or talking to someone and letting it out.  It’s funny because when I began typing this I was in such a horrible mood, but as I put it into perspective and think about how I can use this to get my message for patient rights out!

Yes, I am a victim of brain dysfunction.  No, I will not allow this to become a part of my identity.  I am a warrior, specifically of breakfast.   I encourage anyone going through rough times to look for positives.  Yes, I have been evicted, arrested, lights turned off, fired, and all other life situations.  I have experienced life and this was the first time I felt like I couldn’t fight because it is my body.  I will just work on my body and in the mean time, get the word out that brain injuries are real and people can seem completely normal and be having a seizure.  Life is weird ya’l!!

 

Monkey Health

So, I have been to the therapist, and it is just as tiring as I thought it would be.  I am doing my best at everything though with the hopes that hard work will pay off and something won’t hurt in the future.

There is a neck exercise where I have to turn my head while nodding.  It seems really easy, but it induces a heavier headache.  Sometimes I can feel my neck bones sliding on top of each other and getting caught.  It was better this last time I did it that it was the first time, so there is hope.

I feel like somewhere people forgot they they are really the gatekeepers of their own health.  Of course things happen, I didn’t ask that guy to hit the car I was in, but it is because I have been a relentless patient who followed orders and showed what didn’t work so I could get closer to where I needed to be.  Every day I have about 10 exercises/stretches to do and it takes about 40 minutes each time, and I am supposed to do them 2-3 times a day.  Of course it hurts and I don’t want to do it and I wish I could cheat, but I want answers, so if we can rule out skeletomuscular issues, then we really have nothing but sassy nerves left.

Plus I am an odd case, so they really have to cover everything because of my age, rehabilitation is the biggest desire.  People my age are settling into their careers and lives not filling out medical appeals for memory meds.  I think my age is the only reason that I have not gotten disability.  As I wait for my letter, I wonder how weird things are going to get.   I hope that it comes soon, but if it doesn’t tonight then that gives us time to get through this treatment period and see if there is any improvement in the seizures and the memory.

Luckily I just saw my psychiatrist last week and I have two weeks off with my psychologist  and I and doing speech therapy once every other week, so on the weeks that I don’t have music therapy.  But that is still about four appointments per week and I will need to schedule followups with several doctors next year, but I have to wait until December or January to make those appointments.

Until then, I will be doing these therapies in the home and at the office and as many times as I need to so I can see if they make a difference.  That is the most important thing, is there positive change.  The other thing to remember it that responding well to physical therapy is only “effective” if it takes care of the electrical feeling issues and neuro rehab only if it helps memory enough to be effective at remembering everyday things.  When I could drive, I always forgot to put gas in the truck.  Now I just forget other stuff, like the day of the week or how to speak properly.

We all love to think that we are the special lil people our moms told us we were, and we are!  Some of us are just even more special because instead of getting a broken leg or diabetes, we get something that most doctors know nothing about and half the ones that do are afraid of us.  All they see is “LIABILITY” so they are instantly busy or referring us to anyone else who’ll have us.

I did not ask to be someone’s liability.  I did not choose to have neurosurgery because I thought it was a good way to spend a morning.  I did not choose to lose my memory.  I did not choose _______________. Go ahead and fill in that blank with something you didn’t choose to be or do.

I chose to continue walking forward when the doctors didn’t believe me, when the treatments were painful, when the answer never appeared, I CHOSE to keep going.  How I do it works for me and my family and that is the message I hope to get out there.  You are part of the process and you have to chose the medical and personal routes that work for you and your family.  People may not agree with every decision. If they are in your support group, hear them out, they may have a point you haven’t considered, but stand firm in your choices because that keeps you accountable to yourself and your doctor.   When you choose to do something because your friend told you it was ok when the doctor clearly said no, YOU  are the responsible one.  Not your peer pressuring friend, or the doctor you think should have explained the consequences of this particular action in detail because if you had known your femur would be sticking out of your backside you wouldn’t have done it.

Be responsible.  Take the meds if that is what you and your doctor agreed to.  Go for those daily walks.  Every little choice adds up to either a favorable or unfavorable consequence.  I am making sure I go walking every day.  Even though it is cold.  Now it is a great warmup for stretching my hamstrings.  Stretching cold should be a crime, but that is just my opinion.

If you are part of the support group, consider going on the walks and just going through some of the changes with your friend for a while.  It feels good to be encouraged and to know that someone out there is suffering these changes just to help.  The act of love is immeasurably beautiful and the memories last a lifetime (especially if you blog them).

Monkey In Waiting

There are people who have known me for a long time (over five years) and some who have met me after my decompression and a lot of them ask me why I don’t have a definitive diagnosis concerning my memory.  Unfortunately, it isn’t as easy as spotting a heart problem or a mass on the lungs.  For someone my age to have a memory issue in the first place is highly unusual except that I have been in a car accident and sustained a brain injury.

So people are like, is it the injury that makes you forget?  Well, it isn’t that simple.  My brain was out of its proper position for over a year and lots of little changes can take place during that time.  The surgery took care of the immediate problem which is having brain in the neck.  Part on my cerebellar tonsils were cauterized, who knows what we messed with!  Still, it was all done to help prevent future damage from the formation of a syrinx.

At some point during this situation, I began having seizures, and my neurologist suggested seizures as the missing blocks of time and instant forgetfulness point to excess electrical activity.  So, I see him, we order tests and images, and wait three months,  See him again, I am put on memory medication, some meds changed to help with nighttime seizures, and lots of therapies to see if we can get these nerves and seizures under control and if neuro rehabilitation is going to be useful.  The thing is, we now wait to see him again for four months while I go through these processes which will either give us answers or send us further down a path that will lead to Cleveland.  Even that is maybe a year off.  We have to assess the therapies, run more tests, and then if it required, put in a request for authorization to go to another city to a specialized clinic.

Meanwhile, I am in a lot of pain now that it is cold.  My head has been hurting more and I have been sleeping a lot.  I try not to feel bad about it because what can I do?  I know that these therapies are going to take a lot out of me, and I hope that I can get through them gracefully.  I want to do everything I can to get better and if this shows me that it isn’t helping, then I am prepared to go as far as I have to go.

So, this is a slow process because things are usually done in three month increments and seeing a top neurologist frustrated with my case is encouraging because I think he is so curious that he won’t stop until he discovers why I have the memory loss and if anything can be done.  He already told me that the memories that are gone are gone for good.  I think we should live in the present because it isn’t promised that we will even remember the good times we have.  I don’t forget just bad stuff, I forget all of the things.  I forget people.  We are both frustrated and I know my poor family is.  They have to live with a once very competent woman who describes things with vague words and hand gestures now.  It is just a hard situation.  Even trying to figure out if I am capable of living on my own without hurting myself.  I think that I can but with someone to check on me here and there.  Without disability, that is just a thought right now.  I am actually thankful that I have the opportunity to stay with my parents because I have developed a special relationship with them that I think can only be borne out of a difficult situation like ours.

This week, I have my first physical and occupational therapy visit.  I don’t expect it to be horrible, but I have a lot that needs to be worked on.  I need to be able to write, do dishes, wash my hair, do my own pedicures.  I need to be able to stand in heels, lift boxes, perform, and they have to figure out what is happening with my voice.  The left side of my throat seems to be lazy and that is problematic.  I don’t see the speech therapist for two weeks!  I have been waiting for six months actually because of paperwork mix ups and then scheduling.  I am scheduled out to March.  We will see how they schedule out PT and OT.  I am hoping not more than two days a week, but they like that 3 days a week stuff.

All of this has to happen for several months, then my neurologist will review all of the data and see where or whether progress was made in different areas and from there we determine the next step either treatment OR testing!  They will give me another three month period to see if the treatment works or what the test results say and this is how it always works.  It is not some easy process where the doctor has found a lump on my brain and we know where the problem is coming from.  So far my brain looks normal, that is even more disturbing because it gives no clues to the seizures or the memory loss or the pain or the nausea.

So, if you are new to this process, I pray that you get everything diagnosed quickly, but don’t be surprised when you discover that this tends to be a process that can take years to get answers or discover that there are no answers known to medical science at this point, but they will keep an eye on research.

Don’t be shocked if you are a medical oddity.  You will have horrible days of wanting to strangle every Ivy League doctor out there, but we are the door openers.  We are the ones who keep pushing so that the research is done, so that the answers are found.  So that someone else won’t have to go through what we are going through.

We want memory patients to have access to the few memory meds available if their doctor thinks that is it in the patient’s best interest.  Insurance companies shouldn’t be overriding the decision of someone who is actually with the patient if that doctor has a clean record.

We want neuropathy patients to be heard.  It doesn’t matter if it isn’t on the images, scans, or recordings, THE PAIN IS REAL!  I have been in therapy, and I had a neuropsychologist recommend that I go to therapy.  He didn’t even read my file.  He figured I was just a hypochondriac who lost her keys occasionally and had these headaches that sound like horror fantasy.  I told the neurologist that I was ready to kill that man and please don’t make me see him again.  He wouldn’t even do the exam.  Pissed the neuro off.  Some doctors see one thing in your file and focus on that and then delay your treatment because someone has to now come clean up after them and PROVE them wrong.  Thanks, neuropsych.

If you are on the support team of someone who is on or starting a medical journey, just know that it IS FRUSTRATING and that is normal for things to take forever and you are truly blessed when things go quickly.  If they go slowly, it will be hard, but try to make the most of every day and make the effort to have more good days than bad.  You may be in for a long ride.

 

Holiday Monkey

This time of year is when we tend to reflect on how thankful we are for things that we have, even though we should be doing that all year, right?  I am going into the holiday season with therapies and doctor appointments and lawyers and all kinds of wildness!

I must admit, I have no idea how I’m going to handle the rest of the holiday season.  I made it through Halloween, which I have never been fond of.  Like, just go buy candy.  anyway, once that was over, all of the Christmas stuff came out with some turkey stuff here and there!  However, for me there is is very special day stuck off in there.  The day celebrating the birth of my wonderful daughter.  I actually made it through her Sweet 16 party AND made it to church the next day!  Seriously, I had so much fun!

Now, we have a play that everyone in my family is somehow involved in, then right after that we have to prepare for the church’s Thanksgiving dinner which usually has us there from like 9am to 6pm.  It is a great way for people who don’t have family, or only have a couple of people, or can’t cook, or whatever can come together and eat and sing and fellowship.  We don’t turn people away.  We take food to those who can’t drive or are sick or can’t leave for whatever reason.  We take food out to the homeless.  We feed as many people as we can and it is always such a success.  We found that people preferred this to getting a basket of food they have to cook and may not have access to everything they need.  Plus the more, the merrier!

After turkey day is the worst, three weeks of Christmas parties, luncheons, dinners, and secret santas.  I usually hide out during this time of year because it is just too much.  because just when you think it is over, there is the Christmas program at church which takes weeks of practice in between all of the other social gatherings.  Did I mention that everyone is having babies too?  Baby showers are my kryptonite.  At least at mine we went swimming, but I also only invited five people.  Also, why are we having baby showers on baby number two, three, or four?  Look at me ranting!  That is why I don’t do social engagements.  I often feel like they are over prepared, pretentious events where I have to pretend to have a good time.  I can’t lie that much, so I just don’t go.

Finally, when Christmas is over, there is a whole week of quiet as everyone minds their own business, then it is New Year’s Eve.  I must say, the ONE time of year I want to go to an actual party, I am never invited.  I haven’t been to one in many, many years.  The last time I kissed someone one New Year’s Eve was twenty two years ago.  I feel like, I want to bring in the year with someone I really like, maybe one day.   Until then, I just kiss my phone and celebrate with a good night’s sleep!

The Pampered Monkey

Usually I do my own manicures and pedicures and I don’t mind, but recently it has become more tiring and it takes longer and longer to go through the process.  Still, I enjoy doing it because it helps me feel better about myself and it is just fun.

Today, though, my mother talked me into getting a pedicure.  If you read the Monkey Countdown then you probably read a little about this day, but this is maybe the first pedicure I have gotten since my surgery.  I don’t really have the money for these luxuries and when people touch my feet I feel like I have to pee.  (Deal with it; I do.)  So, after waking from a nap, my mother convinced me to get my toes did.

A nice gentleman ran my water cool for me because I can’t handle the hot water.  He seemed surprised that he didn’t have much to do, but I try to take care of my feet so they weren’t overgrown and my cuticles are in order.  He did have to take care of some dead skin on my heel. For that he got a good tip.  He gave me a great massage and painted my toesies.

When I worked I felt like I deserved to get these kinds of things done because I worked so hard and I was on my feel all day and I went to school and did this and that.  I felt like I had earned my manicures and pedicures and basically everything I did for myself.  I worked hard, so I deserved to be able to enjoy the fruits of those labors.  Now I have a much harder time convincing myself that I deserve a lot of things.  I want a lot of things, but I don’t feel I deserve them.

My parents don’t make me feel like I have to earn most of the things they get me.  I have a baseline of stuff that has to happen, but a lot of times they will surprise me with something I want just because they feel like it and that is awesome.  I lead an emotionally crazy life, they lift my spirits when they know I am in my hard places.  I take none of these times lightly.  I remember when the answer for everything was no because there was no money.  I remember when ALL we had was each other.  We still aren’t rich, so I appreciate every sacrifice they make for me, even just to cheer me up.

These past two years have cemented my relationship with my parents.  It has opened my eyes to far they are willing to go for my benefit.  I think this has been essential in me being able to make it this far in my journey to get to the Cleveland Clinic.  By the time this is published I with have been there at least once if not multiple times.  Having a strong support system makes the journey so much more bearable, and when they are able to treat you to things that make you feel special it is just a blessing.

I always have ginger ale, special pillows, fuzzy socks, a fan, fresh coffee. and the list goes on.  My whole family, my daughter and sister, my real dad, everyone makes my life bearable and I wouldn’t be able to make it without them.  I am so thankful for each one and all of them together.  I realize this isn’t the norm for every person and I can’t begin to describe how sad that makes me.  I wish I could be there to love everyone through their issues.

For now, I will learn for how I am treated so that as the opportunities come along I can treat people well and make them feel special when they need it.  We all need a little pampering every now and then!

The Monkey’s Memories

My day has been interesting to say the least.  I slept in.  When I finally got up, I received a call and got my neuropsych exam schedule and the followup exam for that.  I sent an email.  Drank some coffee.  Got more coffee.  See, I lied.  My day wasn’t interesting.  I probably had you going for a sentence or two.

While I did end up going to therapy and to a volunteer orientation, today held no special feeling.  I didn’t even know what day it was when I woke up.  I didn’t know the date until after 3PM.  Some days, I doubt I even know the date.  Everyday is very close to living the same day over and over again.

It’s like driving down the same street every day and everyday something is different but you can’t quite figure out what.  Then one day you finally stop the car and look around and there are buildings and people but all you ever remember seeing is the empty lots.  You have no memory of a town being build around you.  Even though you have interacted with the people and probably gone in the buildings too.

When you make note of all the change going on someone is there to remind you that you are always surprised at the change going on.  Then you sit and think, HOW MANY TIMES HAVE I BEEN SURPRISED?!?!?!?!

I don’t know if English has a word for the abject horror one feels when they are informed that they are mindless living out deja vous. It also has to encompass being washed over in the sadness of knowing you are going to forget this and experience it again.  How sorry you feel for your future self, who will go through all of what you are currently “learning” and dealing with.

Then the next day you drive down that street and just can’t quite put your finger on what’s different.

It’s like being trapped in time, but only your brain parts.  The rest of you is aging and still carrying on.  Brain refuses to move forward.

Today I scheduled my neuropsych exam and basically, it is a test (this one is 3 hours, my last was 8) to help a neuropsychologist to determine how to proceed with treatment for a condition a patient is having.  *I am NOT A DOCTOR so there may be other reason why this test is performed*  My first evaluation was done a year ago and it was an 8 hour series of activities from memorization, hand eye coordination, hand strength, psychological history, speech tests, and lots more.  The test I will be doing this time is shorter and I am told the activities will be a little different because they are focusing now only on cognitive and memory issues whereas the first test was much more general.

That I was able to get into this place is a huge blessing and the doctors seem just as eager as I do to find answers.  We all know it will take time.  I hope we can find solutions because my memory is stuck and I want to get better.  If I can’t get better, I suppose I will blog a whole lot more because I miss making memories.

 

Happy Monkey’s Day!

Over the years, holidays have become less important to me.  I guess that I have learned that life and all of its beauty (and sometime ugly) should be appreciated everyday and that it is a shame to relegate our attention to something we deem so important to one day a year.

Today is Mother’s Day and I am not thrilled about it in the least.  Why?  I love my momma every day.  I love her in small ways and in big ways and in unexpected ways.  I love to cook for her and to sing with her and to just sit and talk with her.  I want her to know EVERY SINGLE DAY that I appreciate her.  Not one day a year.  I don’t feel this is any more special than the major holidays in August.

I am a mother also.  I love my daughter.  She loves me everyday (even though she is in that teenage thing, she shows she cares).  I think about the past 15 years of being a mom and we made it because there was always a continuous outpouring of love and compromise.  It was easy by no means, but it has been worth every frustration I have encountered along the way.  If anything, I feel like I should be celebrating my daughter for how she has helped me be a better person.  Still, I just try to live in that everyday.

After my brother’s death, life took on a new significance to me.  I had the opportunity to have a long talk with my brother four days before it happened and in that conversation he expressed a lifetime’s worth of gratitude for our mother’s persistent tough love because he finally saw that everything she said and did was out of love for him and in his best interests even when he didn’t understand it.  We talked about the future he would never see.  His death a few days later took me by such surprise that I could only function on autopilot.  However, because we had that hours long conversation about everything I felt comforted because I knew exactly where we stood with each other and how he felt about family.

I am not promised another day with anyone.  I could go, they could go, we both could go possibly with a few more people.  Life is crazy that way.  So everyday is just as important as a holiday.  Today is Mother’s Day, Father’s Day, Sister’s Day, Daughter’s Day, Best Friend Day, Pastor’s Day, Grocery Store Lady Day, and Everyone Else That I love Day.

That being said, I don’t have a problem with any holiday or with people choosing to celebrate their loved ones.  It’s beautiful ANY TIME WE LOVE EACH OTHER!!  If having a special day gives you the opportunity to express the true depths of your appreciation for someone, I support that fully.  We all have our ways of celebrating and as long as no one is being hurt and no property is being damaged then we should just give each other the space and respect whatever show of love is given.

So, I hope that all mothers out there get to enjoy today in a way that is fun and loving for them.  For me, that means curling up with a warm cup of coffee and enjoying my headache in peace and quiet.  Maybe watching cartoons as I drift in and out of sleep.  Probably eating some kind of dinner.  That’s how I enjoy my day.  No pomp and circumstance for me, just coffee and blankets.  I hope you get to enjoy your day however you please be it in pajamas or dripping in diamonds at brunch!

Happy Mother’s Day!

Monkey Countdown: T minus 29 days

I swear I skipped a day, but this train is rolling and we don’t go backward.  Maybe that pulls me one day closer!  Today was quite a day for me.  It wouldn’t have been different from any other Thursday I suppose except our weather around here has gotten out of hand.  It’s cold then hot then rainy then warm then downpour.  I knew when I woke up that I would have quite a day to conquer even though I am not doing much.

I dropped my daughter off at school.  I tend to slouch to the side in vehicles.  It use to be to the right, recently, it seems more to the left. Then I went to go pick up my sister for a doctor appointment.  At a light, I tried to adjust my hips and slammed my head into the window when I tried to lift up on my right arm but pushed myself over instead.  The people in the car looked at me.  I just looked ahead.  You don’t recover from that.

By the time I made it to my sister’s house, maybe in ten or fifteen minutes, my right hand was stiff from holding the steering wheel.  A dull pain had creeped up to my shoulder socket and I was going to have to use my left hand (which honestly, I just don’t trust as much) to drive for a while.  Thankfully, her doctor is close to her house so I had time to rest after she went in.  I stayed in the truck because I needed to go over my speech therapy words and it allowed me to adjust the seat back and relax a bit.

Then, I dropped her back off, went to pick up my daughter, waited a bit for her (I was FINALLY early for once) and then grabbed lunch and came home.  It was so nice to be home. but my right palm felt warm.  Almost buzzy.  Concerning.  This morning when I got dressed my middle finger went numb on my other hand.  I try not to think about these things because what can I do about them?  I have to wait for this appointment and hope that my body is misbehaving when we go so they can see for themselves what I mean.

Like, what would I do if I lost the efficient use of my hands?  I create.  I put together.  I build.  These thoughts swirl around when my hands hurt.  So, I grabbed my piping hot Beyond burger with Cheddar Cheese on a Croissant and took a bite.  I don’t like to think of it as trying to replace the flavor of a hamburger.  Instead, it has its own flavor, like chocolate and lemon cake.  They don’t compete, they are what they are and that is ok!  I can’t even begin to imagine what these are made with.  All with the croissant that isn’t sweet and fresh spinach.  It’s enough to make anyone forget about their worries.

Then, they serve it with these sea salt kettle chips that are amazing.  They pair well and go excellent with a fine ginger ale or root beer.  I can’t get enough of this meal.  Something about it is very gratifying.

In the end, I don’t know if we can change what is happening to my hands.  It is one of the myriad health issues I deal with that kinda make things miserable.  I have spent more time feeling things.  Holding them, noting their texture, just running my hand across some soft fabric or smooth granite.  I have no idea what the future holds, but I want to make sure that I appreciate what I have right now.  They aren’t perfect, but they write and they draw, and they hold my coffee.  They are miracles in their own right and I will celebrate them forever, no matter what happens because I never realized how special it is to have working, skilled hands.