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.

Monkey Guilt

So, here I am feeling a little guilty.  I know that I am not a popular blogger and people aren’t waiting to hang onto my every word, but I really do this for me and I am a little disappointed in myself.  Life has felt serenely turbulent these last few weeks.  I had a seizure and nothing has been right since.  My body hurts, my heart is all over the place, my digestive system is working when it feels like it.  None of this even touches the gem of a headache I am nursing right now.

What’s been up?  Well, I had to turn in my license and go take a picture for my new ID card.  Another blow to my heart.  I love driving.  It wouldn’t have been so bad except it was compounded by my speech therapist that most people who have problems in their singing voice are referred to a vocal coach, but my issue seems to be neurogenic so there may be nothing that can be done to allow me to sing properly again.

Take my foot.  Take my hand.  I need my voice to comfort myself in times JUST LIKE THESE!!!

I have sat for three days wondering what my world would be like without myself singing, or with me singing like a drowning goose.  I can’t even picture life without my voice.  My singing voice has been curated and trained over many years and is what I consider to be an essential part of myself.  Something almost akin to a brain or a heart, I am not sure my body can function without it.  Logically I KNOW that is it just another thing that I may never be able to enjoy.  However, the part of me that has developed emotions and such is flipping out and creating all of the doom scenarios.

Medically, this is not really much of a concern as I do not require singing for my body to function, but emotionally, I cannot find a reason for my body to work if it cannot produce music.  Still, “I can’t sing” is of little importance when I am having seizures, tachycardia, falling, alteration of awareness, and all of the other wonderful things that I have to deal with, at least in the eyes of the professionals.

I also know that it is important for me to get some serious medical issues dealt with prior to  tacking the smaller stuff,  Knowing doesn’t make it any easier.  It’s the waiting that is difficult.

In the end, even slow progress is progress, and after I wait long enough, it is time to act.  Two more days and I will be at the gastro having a consultation about getting a top to bottom barium study.  Likely, two separate procedures, but hopefully, it will give us an idea of why food is getting stuck in my throat and then sitting my my colon until the cows come home.

After this, I am looking at getting my Holter monitor for my heart.  It feels so far away right now, but then it will just be time.  Hopefully, I will just wake up one day and it will be time to go to Cleveland.  Life isn’t going to wait for me so, I am starting guitar again and I will do better with the blogs so that while I wait for life to happen, I am actually making it happen!

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.

 

Monkey Support System

I have such a wonderful family.  I always knew they were cool, but I have seen how every member of my family has sacrificed something to take care of me,  Many sacrifices are long term and continual.  Sometimes a really fun thing has to be skipped on my account, but they are champions for dealing with it the way they do.  I know a lot of people who “know someone who cares for another person” but most of these people don’t see the day to day dealings and frustrations that families face.

Thought I was trouble before?  I am no longer allowed to drive.  In the last 7 days I have had four doctor appointments, a visit to the ER for my daughter, an allergic reaction to medication, and two pharmacy visits.  That is all stuff that my FAMILY had to drive me to!  No one complained when I frantically ran around the house needing to get my daughter to the ER to close up a laceration from a stray burr on the oven, they knew I felt helpless because I couldn’t even help my own daughter because of my health.  My stepdad hung out in the waiting room while I sat with her letting her squeeze my hand.  We went home after two, and he had to be up in 6 hours for work.

I feel unworthy of such love for me and my child, but my family shows me constantly that our love as a family will rise to any occasion and meet it head-on.  While I feel like so many things have been taken away from me, I have been given enough support to cover every loss.  I count myself blessed to have such a team of people around me who keep me going and carry me when I am too worn down.

THIS is a Support System.  It isn’t just my family, I have friends I can call, associates, and complete strangers who are willing to assist me.  Yes, I am a grown woman with a teenager, and my parents take care of me and my daughter.  I used to hate it until all of my money ran out and I could no longer give them money, or pay my own phone bill, or buy socks.  I actually ask for these things now and it has made me a much more humble person.  They could have forced me to give up my own phone bill and get on their account, but they understood how it would hurt my pride and they bit the bullet.

By NO MEANS are we rich.  We know how to be frugal.  I know how to cook from scratch which can save a good amount of money.  We save money every way we can, and we still get to go to the movies and shop, so, it’s a balance.

So, this is what breaks my heart; people who go through chronic illness or chronic pain alone or with toxic people around.  This is something I see in some friends of mine and in groups on social media.  It is close to impossible to walk away from whatever situation I find myself in if I come down with a case of unexpected neurosurgery or incapacitating pain.

Some people get SSI or SSDI right off the bat, but many of us wait longer.  It has been over two years since I first filed.  I am waiting for a hearing date.  Meanwhile I am making no income.  So, I know there are others out there like me who find that the resources run dry.  I assume only a portion of them have the luxury of moving back home.  Some of the people I know who chose this option deal with family who almost feel obligated to let them stay but are not welcoming at all.  A few are acrimonious.

A few have spouses.  Some of those spouses try their best to understand and sympathize the issues associated with the chronic life.  However, some spouses are a stain on humanity and do not believe or tolerate the disability.  So, you have to live in the slim space of being sick without it bothering the person who finances your life and medicine.

There are some who have nowhere to go.  They lose everything in their life, they lose themselves in the pain, and life can take some weird or even dangerous turns at this point.  The streets are no place for anyone.

This all begs the question, “what do you do about it?”

I mull this over every time I go to the doctor and leave with no answers.  I consider it when I am in the MRI housing.  I ponder it when I am on the phone for three hours trying to find a referral that got stuck in Ohio and was not sent back to Las Vegas.  I marinate in it when I am in the ER and I see people there alone, while I always have one or two people with me,

I look at my church as an example in this area.  One of us from the Helps ministry will be there with you at the hospital.  Usually for as long as it takes.  Might have to sleep in ICU for five nights.  Might have to go to another state and care for someone.  You might have to go be there during the dying process.  you may have to feed someone who is injured or otherwise incapacitated.  There is this shared responsibility for the welfare of each other that I don’t know if it exists in other churches or other types of communities…but it should.

Las Vegas has a lot of people who come out without family and they need support in their lives.  When things happen to them, one of us will stay with them and someone else will help arrange for family to get here and get to the hospital.  If I  have to stay overnight with someone, there are shifts of people who bring me food or whatever I need.  It is beautiful to watch such a large response of love toward a single member of the church because we are all that important.  Everyone gets that treatment, even new members, and at times non-members.  People deserve kindness.

I challenge you to be more supportive of the people in your life that are going through something you don’t understand.  Most of the time all you can do is listen and bring them things, and often that is what they need.  They need to be heard and have their feelings (WHATEVER THEY ARE) validated so that they know that someone cares.  Sometimes that means helping them meet a need.  I know that no one wants to part with their money, but sometimes people need help with simple things like toilet paper because their meds cost went up.

The best part about a good support group is that EVERYONE is willing to give as much as they can when needed, even if everyone doesn’t have a lot of money.  Supporters give time, attention, encouragement, and friendship as well as any kind of financial help.  There are some people in my circle that are well off and all I can do is make them soup when they get sick.  I can’t throw money at the flu just like they can’t.  I will sit and listen.  Talk if conversated with and leave promptly because supporters also understand that people need rest to recover.

Supporters understand when you look like you survived a tornado and are forgiving of a short temper or a poorly thought-out comment.  This of course NEVER implies that one can treat supporters like servants or pests, rather, this is the occasional slip of tongue which is also apologized for.

The best part is that a good support system offers cheerleaders for every victory as well as a soft place to land after a loss.  A good support system is woven through love and experience and you can only be in a good support group if you are a good member.  Be the change you wish to see (Not sure who said this; could have been me, could have been Hammurabi).