Monkey In The Middle

I am in between two of the strangest events of my life.  I never thought that either would be necessary, but here I am, coming off of the heels of one and running right into the other.  Four days ago I had my hearing with Social Security and I honestly thought I would have had my body together by now.  Four days from today I leave to go to Cleveland, Ohio to a seizure clinic, because my brain has not gotten itself together so my body can function.

Both events carry a load of stress that make me glad I have a therapist because my livelihood depends on one and I am hoping the other can figure out why my brain function is degenerating.  Also, my family is paying for my hospital stay and it is the price of a car.  They are acquiring debt to help me and so I am going to have faith that not only will we get answers, but this debt will be able to be taken care of sooner than expected.  The past 7 months has taught me a lot about expectation and hope, disappointment and loss.  All of these things can only help me grow if I make the decision to step out and experience not just the action and consequence, but the feelings and emotions involved.  I am not the most gleeful person out there, and I am fine with that.  However, when I am in the mood, I have no reason to act like I am not!  I am allowed to enjoy and mourn the events of my life.

Learning how has taken two years with a behavioral psychologist and a psychiatrist, also a music therapist.  I don’t know what is going to happen nor do I really have much control over most things, so I deal with the things that I am able, and I stop worrying about the things I am not.

ALMOST everything is set for the trip.  I believe that by the time we are on the tarmac, everything will be in place.  I am concerned about how my head will feel during the trip.  I have never been on a plane sober.  I don’t fly much because I am afraid of planes!  However, I am going to see if I can just enjoy the time with my mother because I can’t do anything about having to fly there.  They don’t want me to travel in anything that takes longer than a plane.

I don’t feel too stressed out about going because this is what I have waited for for a long time.  This is what I have prayed for and hoped for and believed for and it is happening before my eyes.  It’s amazing and so I choose to do what I have to in order to keep my stress down and my fun up!

This is a medical trip, and I am supposed to be wired up and videoed for a few days to see if we can catch my brain messing around.  I also hope we can gain some insight as to why my left foot hurts.  If all my nerves in the body are OK, the what is happening in the noggin that is not OK?  We are definitely hoping for a lot of questions to be answered, and maybe some more to be raised.

So, while half of my stress load was left in a courtroom on the record, the other half awaits.  I think that being prepared for any out-of-the-ordinary event is vital to making it through and having the opportunity to learn something.  I learned how to give good testimony on Monday.  Next Thursday, when I am checked in, I expect to learn how to be a better patient (although I swear I am good already).

Mostly, I really look forward to spending time with my mom without other people taking her time.  I know we live together, and see each other every day, but the joy of any type of good relationship is that when put in a different setting, you will learn new things about each other.

Today, I am going to rest, I already know what I need to pack, I have most of my stuff together.  I am going to try to enjoy time with my daughter.  I am going to watch some cartoons.  I will do my physical therapy.  Then rest some more.  A full day, so, let me get busy!

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.