Monkey On Trial

Yesterday I had my SSDI hearing and I am now waiting for an answer.  It can take 90 days to get a notice and I just hope it is an approval of my case.  If it is, then hopefully I can move forward in life and get better.  If not, then hopefully I can still move forward in life and get better.

I think that after three years being able to tell my side of the story was a load off and I hope that I was able to get my point across.  I think that so many people give up because of the amount of time it takes, but I am used to waiting, and I am used to being told no.  I expect a yes though.  I feel the hearing went well and I was honest about my life and my problems.

The relief is amazing.  I left all of that stress on the record and went home a free woman.  I have done everything that I can to have my case approved.  I look forward to projects in the future, but for now a bit of rest, then preparing to go to Cleveland.  I am going to find some way to live my life and advocate for others and live out my dream of keeping other people from having to deal with this.

A lot of us don’t want to go on disability, but our bodies are more stubborn than our minds and refuse to work.  I think that many people could probably use disability and have a case worker who focuses on helping reintegrate the person into society on some level.  The things that I have a problem with are all things I will work to get addressed in some way.  There are lazy people out there who game the system.  I feel like there can be ways for the system weed them out but there has to be the manpower and the money.

Our country has prioritized many things over healthcare and I promise I am not turning political on this blog, but we all need to find a solution that allows access to quality healthcare and mental health care before problems become too large for a person or family to handle.  It isn’t an “us” or “them” problem.  It is an “everybody” problem.  One thing at a time though.

Tonight, I am thankful that the trial is behind me and that my family and friends have been such a wonderful support through all of this.  I am not sure how I would have made it this far because I have wanted and tried to give up several times, but they keep me going.  It is amazing the love that people can have for one another.

I know this isn’t long, but my head is hurting and I just want you to know that if you are in the process of waiting and you are getting tired, there is light at the end of the tunnel.  It may not end up how you want it to, but it will end and you can move forward from there.  Even in failure we have the reward of experience and knowledge and that is the key to finding the positive in every experience.

Just make it through today.  If today is too long, get through the hour.  You can do it.  You may feel alone, but many other people out there (myself included) struggle with anxiety, depression, fear, and many other situations that can be devastating.  Each is valid, and you deserve to have the opportunity to rise above your issue and take your power back.  It can be hard, it can mean loss, but becoming the true you is the ultimate goal right?  You only have to choose to suffer the road.

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 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.

 

The Token Monkey

Accepting change has always been hard for me.  I want to go with the flow…as long as it is going the way I am used to.  Obviously, that is a problem.  Life just doesn’t work that way.  The worst of it is, just as soon as I think I have gotten to a place where I can accept change, here comes some crazy thing out of left field out of my doctor’s mouth.  *BAM* Regression.

I thought the brain pain would be the end of me until the memory thing became clear.  Then I thought we would figure that out and it led to probable seizures.  According to Google, I am prolly headed down the road to some type of cancer.  Seriously, though, I find that each new situation draws out a different fear.  I have feared for my life.  I have feared for my mind and mental faculties.  I fear now that I will be limited by the actions of my body when under control of my misfiring brain.

Losing parts and days of memory has caused these fears to multiply because I never really know what I don’t remember.  I often wonder if I am rediscovering the same fear over and over until it sticks.  Or if whatever is going on is new or has it been this way.

I am currently having a conversation with my sister as I type this about whether or not I stare into space, do I do it often, has it been going on for a while, and is this the first time I have realized it wasn’t normal.  She has told me that I “discover” things about myself over and over and she just goes with it and doesn’t tell me that I have told her before.  I appreciate that she doesn’t assist in making me feel crazy.

Still, the worst part of my situation is that I feel so alone except for the few people who really see what I am going through.  I have stopped trying to explain myself to most people because most people do not understand.  I stopped praying for it to get better because I don’t want to be disappointed if it doesn’t.  I wonder why I bother staying in church when I feel so fake around and disconnected from the people I attend with.  As a congregant I am there to be encouraged.  As a minister, I am there to encourage.  As a human, I am there because I don’t have much positive life experience outside of church; it keeps me out of jail.  What kind of minister am I?  One who knows and understands most of my flaws.

I am prideful, one of the deadly sins.  I enjoy being the best or the brightest or the best looking, but I have been knocked from my self-made pedestals.  I realize I am only human, and not even in the top 10%.  The good out of that is that it is easier to help other people because I am not concerned about everyone seeing or hearing about me doing it.  Quite the opposite now.  It is almost like my penance for all those years striving to be recognized and seen and appreciated.  I want to say that I help people because God wants me to, but I feel more that I owe it to Him for what I have done to people and my own selfishness and arrogance.  I haven’t wanted to get to heaven in years, I just want out of life.  Until I am given my out, I shall serve others’ needs as I am able.

It is humbling to walk through the experience of death and mourning with a family.  I now realize that no matter the race or finances or whatever, grief is grief.  I feel like I know grief so well.  We have spent many nights crying over the broken and lost pieces of my life.  We have joined other families in the ER or ICU.  We have sat with many over a pot of coffee.  When I have grieved enough for them, I return home and grieve the loss of my life and identity.

I used to be so many things that I thought were awesome: awesome employee, great student, talented cook, jewelry designer and creator, landscaper, and definitely a nature loving hiker.  Now I am an unemployed professional patient and I can barely remember the month.  I am the type of person I always feared being; someone who is not a productive member of society.

Medical conditions have made it all but impossible to exercise so I can feel good about my health and body.  Nothing like feeling like a sack of potatoes every time I leave the house.  I can be a nicely made up sack, but shapeless nonetheless.  My self-image is destroyed.  I hate being in this body that doesn’t work right, but at least it still works, so it still gets points.  In the end, it is probably for the best.  I used my looks to use people up and get what I want from them.

Every day that I have to see another sunrise is a day I wish didn’t exist, and I wish each sunset was my last.  I don’t know what other people get from life.  I am looking at going into middle age alone and sick, dreading each day along the way.

If this seems depressing, it is because this is what my depression is like.  It is a struggle that I fight all day every day.  Usually, I choose to do things that will take my mind off of my problems.  So, I spend a fair amount of time at church, I try to get out of the house everyday, and I have indoor activities that keep me busy so that I am not drawn into the spiral that is deep depression.  I go to dance class so I get regular exercise since I can’t drive to the gym or go out hiking right now.

They are called coping mechanisms because there isn’t always a way to “fix” what is wrong.  I can’t instantly heal my body, but I can make sure that I am stretching and exercising it so that I am being proactive about my health.  I can’t do what I want to do, but I am doing something.  I am doing as much as I can to tread water and stay afloat until we figure out what my body is up to.

THIS is the “strength” everyone seems to laud as I go through my journey.  They are so amazed that I haven’t drowned that they can’t see that my nose is barely above water and I am ready to give up.  I am tired, not some hero. I am a human trying my best to keep it together because it feels like I am shattering into pieces.  Putting on a fake smile is not me overcoming something, it’s just that I haven’t broken under the weight of my burdens…yet.  Even I wonder how long I can pull this off for before I need an increase in my meds or have a full-on breakdown.  I hope that I can make it to my diagnosis.  Maybe even my disability hearing.  So far, both have taken over 2 years, so I am not holding my breath.

Should everything fall through and I am stuck in a horrible life, I would at least prefer for my decline to be around people I barely know.  I could never bear for those who once (wrongly) thought I was so courageous to see me lose myself in whatever I am becoming.

If you are dealing with feelings that seem larger than life itself, I encourage you to talk to someone in your support system and that includes family, friends, and your medical professionals.  If you feel like this is it and you can’t take it anymore, please call the National Suicide Prevention Hotline at 1-800-273-8255 because your life is worth living, even if it is to help others realize that their lives are worth living.  I have never needed this number, but I keep it because I don’t know if I will need someone to remind me that I have love in my heart and that is quite the redeeming quality in humanity.

If you are a caretaker or friend of someone who you think may be depressed and holding it in, become a bigger ear and a smaller mouth because they may need someone to talk to who isn’t offering to “fix” a problem or telling then how they can be better.  Sometimes all people need is to be heard so that they can be reminded that they are loved and can love.  The other edge of this sword is that sometimes a decision will be made and you (the friend) will be the one grieving and hurting because there are times minds are made up and all you can do is love until the end.

Life isn’t as simple as picking myself back up, especially when my arms are weak and a knee is missing cartilage.

This. Is. Depression.

Monkey Countdown: T minus 16 days

Despite all of the odds, today I had a pretty good day.  I got some new shoes, did some shopping with mom, went to church.  I felt great all day, but at church I got the familiar tingling or electric sensation down my left leg.  It wasn’t very strong, which is good.  It often stays at the intensity it started at.

I began questioning whether I should go to the gym.  It has been a minute and I have missed it.  Since my head wasn’t “hurting” I decided to do a low intensity weights/cardio combo.  For me that means no more than 20 minutes of each and lower weights than normal with more reps and slower pace at whatever cardio I am doing.  I am a weight lifting junkie and if I don’t set rules I will be trying to set a PR every time I go to the gym,  I enjoy getting my stress out physically, but right now my body is just so weird.

I made it through my leg day and sat down to cycle for an hour.  Then, about ten minutes in my feet are super uncomfortable.  They are starting to feel numb.  I keep pushing because I rule this body, but by 20 minutes, my feet were burning, but that was all they could feel.  So, I stopped in defeat and waited for sensation to return to my feet again as this warm feeling began to travel up my ankles and calves.

It wasn’t until I was sitting at the gym that I thought about my visit to the Cleveland Clinic and began to wonder if they have even heard of such bodily behaviour before.  surely they are used to getting the most odd cases.  Are they used to a patient who has lots of weird symptoms?  What if they think I am crazy?

I am still thinking about all of this and kinda looking around me to see what I can focus on that will take my mind off of how I feel like a medical oddity.  I see nothing that catches my eye.

This is the worst kind of anxiety for me.  Post-workout anxiety.  All of my energy is already gone, so this isn’t really helping me.  I am thinking that in this case, going to bed might be the answer.  I’m trying it out, guys!  Goodnight!!