Monkey and “Friends”

I have read through enough of my own blog posts to see when I began to realize that I was going to have some longer term issues, and one thing I never really anticipated was how my relationships with people would change.  Even how I view relationships has changed.

Church is my home up the street from home.  I remember looking forward to every aspect from picking out clothes to doing nails and hair and lunching with everyone and through the surgery to fix a deviated septum and one to take out the tonsils I managed to remain on good terms.

When the accident happened, I was 4 semesters away from transferring colleges for my degree in music therapy.  As the pain worsened, I threw myself into school and work and volunteering and performing.  I was just trying to get through a tough time.

One day I laid down and barely got back up.  Everything was on hold.  It was about two or three months into 2016 before I went back to church.  It was then that I realized that things were different.  I was different.  I came off of the operating table different from when I went on.

Most of 2016 was spent on recovery efforts.  PT multiple days a week plus home exercises, neuro rehab, and trying to get back into the swing of life.  My neurosurgeon was concerned about my memory loss, more than any of my other symptoms because by six months it should have at least stopped declining.  I ended up with a new PCP who refused to make the referral to the clinic I needed because it required too much extra paperwork.

The pain was coming back with a vengeance and my frustration was mounting.  I chose a different practice and when they got a 2 inch thick file, they decided to start at ground zero.  2017 and 2018 were filled with blood draws, EEGs, EKGs, EMS, 72 hour EEG, endometrial biopsy, swallow test, brain and spine imaging every year, neuropsychological exams, FCE, reactions to medications, trips to the ER, seizures, falls, and more tests.

What have the doctors concluded?

SOMETHING is wrong.

Possibly MULTIPLE somethings.

While my “friends” were dating, working, getting married, having kids, and living life, I was being medically electrocuted to test nerves (like FOUR TIMES!!!).  I was taking memory medication that showed us that my memory loss is not following the pattern  that dementia and Alzheimer’s do.  The side effects were egregious, but we hoped.  As the tests and treatments got more intense, the easier it was to withdraw.

It’s hard to talk to someone in their thirties who doesn’t lead a medical life.  I have nothing in common with so many people and I have a hard time finding common ground with people.  My child is almost grown, I am not interested in children and babies.  I have been single for 9 years, I cannot relate to dating, boyfriends, husbands, love, drama, romance; after the biopsy, no thanks.

I don’t work anymore, so I don’t go shopping or on vacation.  I don’t get invited to anything.  At this point, people know I will only go to an event if I have to go in some official capacity.  Most know I will not stay long, I probably won’t take any photos, and I WILL sit in the truck.

Obviously, these are qualities that make ME the bad friend in all of these situations.  I am unable to adapt because my life has been continuously getting weirder for four years.  I am focused on myself and so everyone else is a little blurry.  It is so easy for me to walk through a room of people and ignore them all.  Sometimes something hurts and I am just trying to find relief.  People catch feelings over this but as it turns out, I can’t really focus on multiple things at once without becoming a monster.

Some of the “friends” just showed their true colors with their words or actions.  I don’t make a big deal over it, I just don’t really want to have anything to do with this group unless it is necessary.  We all do ministry together, and for the good of helping people no burnt bridges because that is not going to assist anyone.  We just won’t be eating lunch together, or chit-chatting.  Part of this is that I am now unable to ignore my feelings about things and I have lost a few filters.  So, I don’t want to give people the idea that we are friends, just that we can accomplish things to help others.

I know that I have to do some growing in this area, but I just cannot connect with people.  I think maybe I am jealous that even if I wanted another child, my body would make that very dangerous.  I spent my 20s taking care of my daughter and working and into my 30s added school.  I dated but my life with my daughter and family was more important than some guy.  Now, my daughter is almost grown and I face the prospect of being cared for my my parents until my daughter or a nursing home takes over.  I feel like I cheated myself out of those things.  I could have taken the time, but I was trying to raise a child.

While I was trying to do everything right, I got rear ended and that effectively ended my life as I knew it.  I spent my whole life from 14 to my 30s trying to make life better.  I did’t fail.  Yet I don’t think people really understand the feeling of constant pain and how that changes priorities and relationships.  Parties mean more pain.  Showers are pain.  Doing hair is pain.  Sitting in a dinner chair for an hour is pain.  Luckily, social convention says that I just grin and bear it and spend two days recuperating so that I am not depriving people of a good time with a poor attitude.  I have an awful attitude, so I stay home.

I go to multiple appointments a week.  I have more doctors than I have people I would classify as friends.  At least the doctors understand what I am going through in a way.  The therapists (I have 5 in different fields) want to hear all about my medical issues.

Everyone else just wants to hear that I am “cured” and back to the Before Michelle and I am not sure that any Michelle actually exists except as a façade of someone who never even really existed.  That and as an online presence.  Michelle is who everyone is friends with.  I am not really her anymore.  She was the enjoyable side of me with hopes and dreams and the real me behind her had the drive.  My hopes at this point at just less pain and I hope this doesn’t turn into a years of suffering thing.  Unfortunately, my real self is prepared for that possibility and it makes everyone else and their lives quite unimportant unless they are in duress.

I changed, and am still in the process of changing and I don’t now how this will affect my role as a minister.  I don’t want to be the reason that people stop coming to our church and I especially don’t want to lose control of my tongue.  Someone who wants to know how I’m doing/feeling will be the catalyst for my explosive anger.  It is by grace alone that I have not already been there.

I don’t know how much longer “Michelle” will hold up, but no one there truly knows me and that is lonely.  Everyone who I thought did has shown that I am simply a convenience in their life.  Unfortunately, in friendship we both need to get something from it.  I get dismissed.  I get pitied.  I get prayed for.  Never just friendship.

Growth may solve this in the future.  I hope it does.  Until then, I have the internet.

Monkeyologist Visits Are The WORST!

**WARNING: This post contains real life situations that I shouldn’t even need to put a warning up for, but people have grown kinda soft. **

So, recently I had the wonderful experience of peeing on myself in the kitchen.  I have have even mentioned this, possibly written an entire blog post, but here we are.  I kinda spaced out and it happened and life went on and I called the urologist.

As usual, went with my mom and had to go through the whole ‘try to pee in the cup’ thing but this time, I couldn’t stop peeing and I bet that made someone’s life interesting.  I wiped everything as best I could.  Really, I just can’t see over this chest I have and have to pretty much guess what’s happening and it is usually to my detriment.

Anywho, I was prescribed Myrbetriq.  Apparently this is a newer class of drugs that help control bladder spasms without the side effect of peeing on yourself (it is a literal side effect of the medication I was on) and I was so excited until the pharmacy called and said they couldn’t fill it because I hadn’t taken all three of the recommended medications.  Last time, they said I couldn’t take it because I hadn’t taken both.  In six months they managed to add a third one to the list.  It was the SAME one I was on, but extended release.  So there was a possibility for a longer portion of the day that I would have an accident.

Well, I had no choice but to at least try it.  As soon as I picked up the prescription, the insurance approved the Myrbetriq.  I was so thrilled.  I picked it up, and after a few days I called the urologist’s office to let her know how it was working.  They didn’t even know it had finally gotten approved!  So I let them know so they could put it in my record and I love this prescription.  I have not experienced any noticeable side effects and my bladder is functioning more normally.

I can tell when it wears off because I have to pee every ten minutes, but it is an extended release and works for a very long time.  This is one of those things that I don’t often share with the people I know personally, but I share openly here because this has probably happened to someone else and they have weird feelings about it.  We only have so much control.  When a medication takes that modicum of control away, it can be self-devastating.  For me, I am watching my body do weird stuff, this just was too much and I am glad we were able to control it.

Neurological problems often affect the urinary and digestive systems.  It isn’t strange that any of this should be happening, but not because of the Chiari, something else is happening and that is what we are on the hunt for.  We are trying to find out what is causing my body to go mad.  So far, it has been a wild ride that involves many ups and downs.  They say it’s the journey that matters, and right now the journey is wearisome. I believe that we will make it though.  With faith, family, and friends, amazing things are possible.

However, my age makes it harder to get doctors to listen, but again, I am my own advocate so if you didn’t hear me I will just speak louder until you respond.  This is how I have managed to deal with doctors and such so far, and it is working.  Keep calling.  Keep finding your paperwork.   Keep your file out enough that doctors know you and be a good patient.  Don’t argue with a doctor who has years more experience and probably vast quantities of specific knowledge that you can’t imagine.  Do ask questions, though, so you understand why something isn’t how you thought.  Good doctors are willing to teach their patients so that they can more easily work together to find viable treatment options.  Be kind and respect the knowledge that your doctor has and I promise that you will gain insight into things.

Understand that high level specialists tend to be aloof.  They have their heads in very high places of knowledge and when they are with you, they are listening to what you are saying and comparing it against a vast background of knowledge, experience, and theory to come to a reasonable conclusion about what is happening with your health.  They are not looking at general things, they are often looking at what specific things in their field match the set of signs and symptoms they are given.

My neurologist barely even looks up from his computer when we are talking.  He is making notes about what I am saying how I am phrasing it, how I look symmetrically, and when he hears something that catches his ear, he will begin an intense line of questioning while furiously typing our responses.  Still, part of our visit involves just talking and explaining how the symptoms are progressing and what the next step in the plan is.

I look forward to seeing him.  I admit, I just want answers, but he’s a pretty cool guy I just hope we are able to get somewhere and not spin our wheels.  We’ll see how all of that works out.  Keep positive because even the bad sides have good points and the lesson is not just about getting through the obstacle, but getting through it with grace and tact, and being a kind person in the process.  I’ll let you know how this works out!

Inky Monkey

I love the arts.  I am particularly fond of music (Baroque being my favorite period) but I enjoy the grace and beauty of ballet, literature from all over the world, and of course I admire the curves of a statue or the brush strokes of a master painter.  However, I am aware of a few things:

• There are other forms of artistic expression and art evolves
• I only have a small bit of artistic ability outside of music and sculpting
• It is OK to be bad at art and still enjoy trying

So, I decided to participate in Inktober, which is where you draw something everyday for the whole month of October.  If you click on the link above you can visit that site and check out the rules and past prompts.

Anywho, my hands seem to be weak and so the prospect of drawing something everyday is very daunting.  However, I am waiting to hear test results that could alter my life course so I am challenging myself not only in dance (my feet are also weak) but I want to push my hands to their limits.  I have tried to keep each design easy, things I think I can draw fairly easily, and in most cases I do not color in the picture.  I usually will use dots as color markers because it hurts to hold and press continually to color.  The dots use my wrist, so my fingers aren’t taking as much stress but they are still used to do the initial sketch and the ink lining.

Having a chronic illness or chronic pain or any disability can be discouraging when life changes drastically.  For me, it has been shifting and changing for three years, so even though my family and home are stable, my body and health are not.  It gets very easy to quit or give up on things because I physically just can’t do it like I used to or my neuro team says, “NO!!!”.   I decided to not let any of this stop me from finding ways to express myself and get my energy out in a peaceful way.

I joined dance because my body feels foreign and we need to be back in sync. I decided to do Inktober because I wanted to release creative energy.  What really lured me in was the challenge to do something that I enjoy but am not really good at.  I can make a drawing and people can know what it is, but it usually would not be considered “art” by anyone with reasonable taste.

We are four days in and I have given every day 100% effort to make something that I didn’t think I could make.  Today, I think my most difficult challenge was perspective.  I really didn’t put that much thought into distance and size so I feel like everything looks ‘off’ but I am still happy with my work.  I am happy with myself for trying and being able to figure out what I think could have been better.  I hopefully will adjust for the future.

My fellow humans, perspective is often what we have to work on so that we understand what is going on and how to best deal with it.  It is easy for me to lay around everyday with this stupid headache and watch cartoons.  Changing perspective has allowed me to see that I have the opportunity to recreate myself as soon as all of my medical issues are under control.  I just have to keep trying new things.  For now they help me not think about test results, in the future they might be what I need to make an impact on the world.

I encourage you to try new things or do things you aren’t good at for a little while.  It is amazing what your brain can do when you give it freedom to express itself in new ways.  My hope is that everyone can find activities that suit their needs, physical, emotional, and mental.

If you are a part of someone’s support group make sure you are a cheerleader.  Be supportive even when you are fairly sure the person has lost it.  Do the same activity, or at least give feedback on the person’s progression.  My daughter is an artist, and she critiques my drawings with the knowledge that this isn’t my strong suit.  Shoot, I am not a writer, my sister is an author, and I write this blog like I know what’s up!  I realize I probably change persons and tenses and that I easily switch from proper grammar to words I make up a little too often, but she gives me the benefit of knowing that I sing.  I write as a fun thing, but nothing serious.

Your support means so much to the person you love because they have probably seen the misery of someone who does not have a support system.  It is heartbreaking to think of what life would be like in the worst of times without you being there.  We love ya’ll.

That’s it.  I have to go get some rest because tomorrow I have to draw something else and I have to get that beauty rest to make beautiful things!