Monkey Pants

Every day I have to remember a simple thing; sit down to take off my pants and socks. 

Seems crazy.

Normally, at this time of year I am fuelling up on coffee at midnight to get to work by 1.  So, my early mornings were hectic.  I did the bathroom stuff, then put on my pants as I walked back to the kitchen to get my lunch together.  Then put my socks on while standing because sitting wastes time.  Even shoes didn’t require sitting.  Within 30 minutes I could be up, cleaned, coffeed, lunched, and out the door to my job that is 7 minutes away.

Now, I don’t have the balance to do that.  I risk injuring myself on whatever I hit on my way down.  So, I have to verbally tell myself to sit because there is no rush.  It’s ok to take my time because that is what I need. 

Normalcy is always taken for granted.  We expect the shower to be hot.  We expect the car to start.  We don’t expect to be left in a place where something is different.  When it is, we have to learn to cope until normalcy is restored or a new normalcy is achieved.

I have to sit in the car, then turn my legs around into the car.  I am a plopper.  I like to flop into the car but I can’t now. 

To be honest, I enjoy the idea of having to think about how important it is to treat my body carefully.  It has taught me a valuable lesson.  Now, I am creating a new normal.

That doesn’t always make it easier.  My situation has many uneasy things going on.  I am unable to do many things, but I am now able to do some things.  When I feel the need to be independent and do something I shouldn’t, I tell myself that it’s OK to ask for help because I will be able to do it when I am stronger.

Should you find yourself in recovery while reading this, remember, if you hurt yourself, recovery will be longer and worse.  Do the things you can do.  Work within your limits.  Your body is getting stronger every day.

If you find yourself frustrated or depressed by your limitations, talk about it.  Or blog about it.  Cry.  Recovery is difficult and you are allowed to have every emotion you feel.  Just try not to take your negative feelings out on your caretaker.

Sometimes, I tell my sister that I am just angry and having a bad day.  She usually with just let me ramble on until I feel relieved.  So do my parents.  My daughter is kinda young to deal with over-emotional mommy, so I try to get it out before I spend time with her. 

Recovery is slow, painful, boring, and it has good days as well as horrid days.  Your feelings matter if they are happiness or sadness.  

I suppose we all have to put our recovery on one leg at a time.  We have to sit out of life and slowly put our health on one day at a time.  Slowly and carefully we will make it out into the new norm. 

I can’t stress enough that your feelings are valid.  If you don’t even get those pants on today, thats cool.  Be upset, and resolve to try again tomorrow.  It will get better, but it will take time.

MichelleMichelle feels your struggle.

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The Free Monkeys

This is a topic close to my heart.

Literally.

Maybe not one for the guys.  However, feel free to read on, men!

When I went in for surgery, I was told to take off ALL my clothes and put on a gown, 2 single leg stockings, and a set of yellow footies. 

So, I was feeling quite naked by the time I got back into my bed and get prepped for surgery.  I reminded myself that these people are professionals and surely they have seen worse patients than me.

Then, I realized as we were moving through the hallways toward the surgical theater that my chest was all over the place.  It was a little unnerving.

Upon waking up, I didn’t think much about it until a few hours after surgery when they asked me to to stand and try to take a walk.  When I sat up, I felt like my shoulders would rip right off.

See, I am no small girl.  Especially in the chest department.  I wear a 36J.  Did you know that size existed?  Many people don’t. It is a struggle because getting them smaller costs a whole lot more than getting them bigger.

Anywho, the two grapefruits of my body had a mighty pull on my shoulder muscles which were sore from my neck being cut open.  I managed to sit up, then demanded to lay back down because it wasn’t working out for me.

Over the next couple of days I was able to walk short distances with help and I got used to the pulling sensation.  When I left the hospital, must have been my first time out without a bra in like, 20 years. 

It was freeing even though I was only going to my sister’s house to recover.  I spent days there, bra-free until December 11th when I had my first post-op visit.  I decided a sports bra might be more comfortable.  It’s soft, no underwire, breathable.

I was wrong.  See, the t-strap made sure to touch every part close to my neck that causes pain and then add in the weight that is pulling on those tender parts.  Getting it off was another story for a different blog.

So, it wasn’t really better.  On the 17th I decided to wear a more standard bra.  I was surprised at how much easier than I thought it would be to hook it.  The straps were farther apart which made it much less painful, but every bra is pretty stupid feeling after a few hours, so I was glad to get home and get it off.

It’s hard to believe that in 30 days, I have only worn the boulder holder around four times.  It’s not really my thing right now. 

I honestly don’t know if or how this affects the population of women who have decompression surgery with less endowment.  It is still a new type of life for me.  As I get stronger, it is easier to wear the beast, but at home, I am not above sitting them on a pillow to help take some weight off my healing bits. 

No part of recovery is pretty until recovery returns you to normalcy.  I wondered if I would write about this topic because in our culture breasts are considered vulgar unless they are selling something or attracting men.  People don’t want to see you without a bra on unless you are “perky” because that’s not pretty.  People don’t want to see you breastfeed because that is gross.  I am a human, yet at the times I trudge through the store in my pj’s and no bra, I am looked at like a slob, not a woman who just had her skull cut open and her brain heat-shrunk. 

I don’t tend to care what people think, but surgery and recovery put your emotions in a fragile place.  If this is your case, remember, at the end of the day, you only have to worry about getting better.  How I look is not who I am.  I will be back at work.  I will be back teaching and going to school.  But until then, I am going to run around free from unnecessary constraint and focus on getting stronger.  You should too.  The, when you are all better, throw on that Wonder bra and rejoin the world of upheld boobies! 

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Monkey Sleeps Tonight

Sleep.

It can be a struggle with this scar on the back of my head.  Sometimes, something touches a certain part of the scar and my head hurts in a special, angry nerve kind of way.

I have spent many hours configuring pillows trying to get good sleep.  Every morning my neck began to hurt worse and worse.  So last night I went shopping.

Got this memory foam, contoured pillow by Dream Serene.  I love it so far.  I woke up fairly limber and I slept through the night.  No adjusting.  Just sleeping.

I am still looking for pillows that support well so I can sit up more comfortably.  I will review those when I have a chance.  Maybe Dream Serene has a bolster.  Gonna look tonight.

Everyone has to find what works for them. I am not a doctor nor a sales person.  Just a consumer letting you know what helps me. 

I wouldn’t recommend buying too much before surgery because you never know what specific thing you might need for your recovery.  Everyone is different.   I wish I had known that I needed to buy stock in Sonic ice and ginger ale. 

I am still in bed for at least 18 hours a day.  You might be too if you heal slowly or have a complication.  Try to be comfortable within reason.

Pillows can be expensive, so make sure to find a sale or a coupon.  Or, if people are asking what you need, TELL THEM.  They are asking to help.  Give them your coupon.

Rest well.

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The Monkey’s Zipper.

Often, people with Chiari often call themselves zipper heads.  Now, with the staples in, it is extremely easy to see how they came up with this name.

Those staples look like they zipped your head back up (after shoving your brains back into your skull).  The other photo is 18 days post-op, with the staples gone.

This is 27 days post-op and you can see that it is healing.  But there is a dark side to healing.

A side that crumbles off on your pillow at night.  Or falls off if you scratch unwittingly.  They are your body’s way of healing open wounds, but they never stay too long.

Scabs.

Oh, they are gross.  I scatched behind my ear the other day and it just popped right off.  It was from one of the holes made from the vise. 

But the gross ones are from the main incision.  They are coming off little by little, but my hair has grown into them and it is almost impossible to get them out.  Since I still can’t wash my hair or put anything in it I am stuck with these scabs.

The worst is the itch.  You’d think they would have something for it.  But, everything that helps the itch slows recovery.   When your head is threatening to pee, you just deal with it.  I am dealing with it ok.  I just tell myself that it is t worth another trip to the hospital.  It will only itch for a little while. 

We were told we could put Vaseline around the outer edges of the scar, but we use Lansinoh.  It helps.  But seriously, the itch is amazing. 

I was also told that itching is usually a good sign that the skin is healing.  I have seen this to be true from other wounds I have sustained, so I’ll go with it. 

After the healing and the itching, I will be left with a scar that is fairly unique among people.  Eventually, hair will grow and cover the scar and my condition will be secret again.  O ly those who know me will know of my struggle. 

Except I plan to tell the world. 

Maybe even show this scar off for a while.  We’ll see.  For now, I am content with my developing zipper scar and that’s fine.

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Get The Monkey Out!!

Christmas is over.  This year it felt very hollow.  Not the family or anything like that.  Usually at this time of year I feel differently.  I am outwardly focused.  Trying to finish finals, go shopping, decorate, help whoever I can.  Cooking huge meals and delicious desserts while singing my favorite traditional carols at full volume.

This year, November and December were all about myself.  Visiting doctors, taking pain medications, MRIs, sleeping, lots of sleeping.  Then the surgery.  Everything changed.  I needed help sitting up.  Someone was feeding me.  Walking me to the restroom.

Today, 27 days from the table, I can fix really easy food for for myself.  I don’t use the walker.  I clean myself up.  I can spend a few hours out of the house, though it is exhausting.

People want to come visit, but it is difficult because I never know how I will feel or if my body will try something new.  A good friend came to visit.  Luckily, not much happened but she is a nurse and knows how to handle the unexpected body quirk.

For the past 2 days I have been sleeping a lot.  Not sure why, but when my body says “sleep” I make sure to listen.  My days blur together; I don’t always know if something happened today or yesterday.

My healing is my main focus.  I want to get better so I can actively help and love others.  That’s why the season feels so empty.  It been all about me.  Even for my family, it has been all about my recovery.  No trees or lights, no listening to Handle’s Messiah.  They have been getting prescriptions, taking me to post-op appointments, doing my laundry, buying all the crazy little things I need.  Sitting with me so my sister can rest.

I feel like I swallowed the holiday season.  I know I didn’t, and I would be there for any one of them, no matter the time of year.  We still enjoyed our small Christmas gathering.  We had a big breakfast with pancakes, eggs, Applewood bacon, maple sausage, grits, creamed corn, cheddar biscuits.  It was all good.  I now understand love on a deeper level.  Not a single person in my family has complained about how my condition has affected their lives.  No one has made me feel bad.  They have let me know that they are tired.  That is to be expected.  They put a lot of effort into seeing that I am comfortable and in good spirits every day.

Look, if people are willing to care for you, know that they are working very hard and long hours to see to your care.  They are good folks if they don’t make it your business to know a lot of how they feel.  So you have to be kind to your caretaker.  Thank you.  Say it.  All the time.  Please.  It’s very much in fashion to be polite as a sign of your gratitude.  And if they come to you with a grievance, listen and find a way to deal with it that satisfies both parties.

After getting surgery on my sinuses, I asked my sister to make me Macon and eggs.  Multiple times a day.  Multiple days in a row.  In top of the other things she had to do to care for me, like clean out my nose (where she coined the phrase “bloodmucous”), follow my 3 hour med cycle, and everything else.  On day 3 she looked terrible, like she had been locked in a dungeon for a few months without light.  No sleep.  Kinda in a daze.  Following preset alarms with instructions on the phone.  On day 4, she came in the room and announced that she cooked the bacon.  ALL the bacon.  And the ends and pieces too.  There would be no more bacon and eggs.  NO MORE!!

See, I didn’t consider that she needed time to rest and there is peanut butter and jelly.  Now, I am better about that.  Sometimes we order in.  Sometimes Mom brings food.  Sometimes she cooks.  It’s easier on her this way so, this time she looked a lot better on day 3.  This time, she just looked like she spent the weekend partying.  It’s been a journey and it isn’t over yet.  I can’t even pour a gallon of milk yet.  But I did put peanut butter on bread, so, yeah!

Now, I am really wanting to get out and see the world I miss so much.  Focus on something besides myself.

Soon.

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Monkey 23

It has been 23 days since surgery and 2o since I have been recovering at my sister’s house. 

I am able to walk fairly well.  I don’t use the walker unless I know I have a lot of walking, but I am resting a lot more because of my pseudomeningocele, the bubble of spinal fluid collecting at the base of my skull.  (Gonna probably write stuff you may have read, but just in case…)

Because I pulled my lumbar drain out, I have a higher risk of the fluid not being absorbed quickly enough, so it makes a bubble on my head where it pools.  Part of what helps fix this is laying on it. 

Laying on my wound.  My hurty, scabby, now sensitive incision site.  It is already hard to lay on my back.  It is highly uncomfortable.  To assist, I use lots of pillows.  One is a bolster to help with shoulders or lumbar.

Once I set up my bed throne, I get this ice pack. And I put a towel over it and use it to cradle my neck and the back of my head.

Now, this is a hot/cold wrap that is not gel.  It has this clay mixture that conforms better and releases the cold very steadily.  It takes about an hour to freeze it and I can’t really tell you how long it works because I go to sleep usually.  I’d say it can stay at a good temp for at least 30+ minutes.  When I am up, I can’t deal with the pressure for that long, so I use it for maybe 15 minutes at a time.

I have been eating at a normal rate since getting off the Augmentin a few days ago.  And in case you are wondering, it’s all working out beautifully. 

I still get very tired using my arms.  I was writing Christmas cards to people and I could only do six on the first go.  I have been doing some paper crafts to help gain some stamina.  But a little at a time, and when I am tired, I put everything away and rest.  That’s the better, less fun thing to do!

Even using my phone often involves propping up my arms and trying not to look down too much.  The phone is a constant source of information and entertainment right now, and holding makes things spasm and ache.  Looking down stretches the incision and since there is a large scab in that does not stretch, it is very uncomfortable and possibly dangerous since I am at risk for leakage. 

Still have to take it easy and hope that I can stay still long enough to get out of the danger zone. 

So, back to bed…

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Bed, Bed Monkey!

One of the instructions we received post-op was to rest.  Especially if my head began to hurt.  Remembering that your body needs energy to repair itself is important. 

I get up and do things but on a typical day I am in bed at least 18 hours.  Even if I am not sleeping, I am probably laying down. 

This is how recovery gets monotonous and people rush to find something to end the boredom.  It gets boring in bed.  I don’t want to just watch TV or movies, so I read a lot.  About everything and anything. 

I go through hundreds of articles a day, just trying to satisfy my thirst to learn new things.  Often, I just learn something during the course of a day, but now I have time. 

Many things I do regularly have been banned by the doctor during recovery.  So, really, I have unproductive free time.  That’s why I write here.  So I have something positive to do with myself. 

I keep telling myself that if I move too fast, I will wind up in the hospital with a complication.  That will make recovery longer and probably more ornery.  Also, my sister would kill me.

I think what really makes time noticeable is thatI am no longer on much medication.  The Valium keeps my muscle spasms in check and this Augmentin is killing my soul.  Today I took half of a Norco because my head hurts.  I have been using Motrin to control any pain, but today, my eye hurts from the headache. 

I think the natural reaction of the body is to rest until you feel better.  In my case, I rest until my head stops threatening to leak.  I rest when I am a little tired.  I rest after being out for any amount of time. 

I often feel bad because I can’t help do anything.  Lifting could be disastrous.  My sister knows this.  But, it doesn’t help the actual situation.  She is tired.  She is the best trooper.  I look forward to doing something lovely for her when this is over.  She makes sure my brain doesn’t leak.  That is love, yo!

If you are recovering, let yourself rest.  Gove yourself permission to be outwardly unproductive while your body in inwardly productive. 

It could be weeks.

Months.

You deserve time to get healthy again.  You need time to readjust your life-view.  Life might be very different after surgery. 

I don’t know how things will be in the future.  I have to be able to lift 75lbs for my job.  I was told that by March, I may be able to lift 20.  I can’t imagine what it will look life if I don’t have the ability to go back to work when I need to.  But I am resourceful, and I will survive.

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The Granted Monkey

So, today I have been considering many of the things I take for granted that I have not recently been able to do for myself.  So, I am going to spend some time contemplating that in words.

1. Driving- I have been loose on the road for 18 years.  I got my driver’s license on my 16th birthday and have not looked back since.  Now, I have to ask someone to take me anywhere.  The store, the doctor, pharmacy, and anywhere else I need to go.  Or, I have to ask someone to go for me.

2. Cooking- The kitchen has been my favorite room for longer than I have been driving.  As a child my mother taught me how to make food.  Now, I can’t even pour my own drinks. 

3. My schedule- I tend to plan everything.  It is in the phone calandra and I try to pack every minute of being awake with something that makes me feel productive.  Now, my schedule is medicine based and my recovery does not allow my to pack many minutes with anything.  Mostly sleep.

4. My motherhood- I am a free-range parent in many ways.  I try not to lord over my daughter and allow her to experience life and make decisions.  But she is my daughter, and often I am too drugged up to spend meaningful time with her.  I text her and we talk on the phone.  I try to stay awake when she comes to visit, but at times, it is difficult.

5. My job- I got my first job at 14.  I have spent all but maybe 5 years of this time working.  I like getting up and going to work, even if the work is hard.  I always assumed that I would have every morning to get up and work.  Now, I sit around wondering if I may have to change my field of work.  And what would I do since I can’t immediately go back to school?

6. Music-  I have had music since I was a child.  I remember listening to Vivaldi and having lively daydreams.  I remember singing Handel’s Messiah, especially How Beautiful Are The Feet.  I started piano around 6 or 7 and eventually moved on to saxophone, clarinet, flute, percussion, and eventually concentrated on voice.  I am not a pop singer, or a gospel singer, I sing arias.  I sing lieder.  I can fill an auditorium with just my voice.  I am not allowed to sing.  Or play piano.  Or guitar.  And I feel like I can not be a musician because all of my musician tools are unavailable to me.  I feel like less of the person I was before. 

7. Mobility- You know how you get up in the morning and do your bathroom stuff?  Well, it is better for me now, but before, I had to ask my Coco to help me just to get up and to walk me to the bathroom.  She put on my socks and pants.  Zipped my coat.  Picked things up that I dropped.  Cleared paths for my walker.  Really, she has done so much because I was able to do so little physically. 

8- Myself.  It sounds kind of weird, but I rarely do meaningful things for myself.  Yes, I do a lot of what I want, but I never really took time to just care that I am ok.  Everyday I fight to stay positive because now I see how much it matters.  Before, I looked at happiness and well-being as a luxury.  Now, I fear what could happen if I fall into a depression.  I have never really known what it was like to be as concerned with my well-being as I am with my daughter’s.  I have to keep reminding myself that this is a new beginning and new is good, whatever new is going to mean for me.

9. My church-  Not my belief or my relationship with God, but the people who I used to see all of the time.  I slipped out of church as the pain got worse.  It is hard to explain mega-headaches to people who tell you, “Give it to God/You need to be more forgiving/Jesus heals.”  I am a Christian.  I know all of the church platitudes.  It is like they don’t understand that I was born with this condition and I believe God allows me to suffer it because I will be able to help someone get through it later in life.  I don’t miss those people.  I miss the people who understood that I am a human and I can only bear so much before I have to give in to my physical weakness.  The people who comforted my mother when she learned of my condition.  The ones who make sure we have food and come visit.  The ones who don’t treat me like a medical case, but understand that I am a person who has feelings that are valid.  I took many of those people for granted.  And they are all rooting for me and now I am disappointed because I can’t do much to show my appreciation.

10. My health- I am not the healthiest person alive.  Through the years I have had good and bad health habits.  As a teen, I smoked and snorted almost everything.  Many things are completely unknown to the public, but I got my nostrils on them and had a great time.  At the same time, I hiked and climed, drank lots of water.  50 grams of fiber a day?  Easy.  3 miles a day, ok.  No calorie Sundays!  Juicing.  Smoothies.  Kale.  Gin.  I like to liven things up.  I am much more reserved now, but all of that has put me in a position where recovery for me will be more difficult because I have messed up some things.  Now, my focus is to get better, despite abusing my body.

I know this was long, but I did only choose 10.  The lost was way longer.  You may find yourself contemplating this type of thing, and honestly, it works out better if you use this time to learn to appreciate instead of dwelling on the past.  The goal is to stay afloat and remember that even on bad days, you are recovering and it will be better.  If you are sad, talk with someone, because your feelings are valid.  Everyday I talk to multiple people and they all know my feelings.  Sometimes, I wake up and want to argue with everyone about everything.  I try to let everyone know so they don’t get too mad at me, because sometimes, I am a jerk.  And they tell me.  And they helpe deal with why I am angry.  These are the people you want around you.  The ones who know you and love you anyway!

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Monkey Staple Freedom

So, after the surgery they opted to staple my head together.  I had a row of 17 along the inscision, and 2 that were off to the right in front where the pins were placed for the vise.

They have been a constant source of itching and pain when I lay on them.  One in particular bothered me a lot and was probably on its way to getting scratched out. 

It was not a terrible process.  I laid on my stomach while they pulled them.  At times it stung, but I think that is because scabs were being broken.  Then, it was all over.

The skin stayed red, possibly because the metal in the staples was not cool with my skin, but in 2 weeks, it is amazing what out bodies can do as far as healing.

All of this is great, but I am still at risk for a serious conplication.  I can get a pseudomeningocele.  It is a collection of cerebrospinal fluid that accumulates in one place.  Because it puts pressure on all the parts we just fixed, I would end up with the same symptoms and a giant ball of fluid collecting on my neck.  Horrible and ugly, the double hitter. 

Also, I am still at risk of my wound leaking CSF.  It might not build up pressure, but is an immediate trip to the ER and probably back to the surgery theater to be repaired.  Nobody wants that.

So, I still have to take it easy.  I was told piano would be too much right now.  I was told I probably couldn’t hold up my guitar.  Worse, I was told singing opera would (in Coco’s words) make my head pee.  I know the nurse was trying to make me feel better by saying I could hum, but I can’t sing and that hurts the most.  I’d risk a trip to the doctor just singing a few measures of Schubert.

Sometimes life dictates that we avoid what we love to ever have it again.  I can’t even remember where I originally planned to go with this post, but, now I am sad and I am going to go. 

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Monkey Rest

I have spent a lot more time resting. Because I was told to.I have talked previously about the patient caregiver relationship. It always involves the patient doing what the caregiver says. Unless it’s abuse, I suppose. But that is not my case.

I have a bulge by my incision and we are trying to make sure it doesn’t turn into something serious.

So, I decided to be decadent in bed. I got Häagen-Dazs Chocolate chocolate chip ice cream with a banana and bacon crumbles. Not fake or tiny bacon crumbles. Like bacon chunks. That was a queen’s breakfast and I was the queen.

I may have worked on a blog, but I did a lot of reading. Then I had cheese and crackers for lunch. I am a simple girl.

Cheddar.

Colby.

Townhouse crackers.

I eat strategically when I am on an antibiotic. My current one is Augmentin. It kills your GI flora so I take a probiotic and freely indulge in yogurts with live cultures.

I got this kefir. It is supposed to be a great probiotic but it is a little too sour. Tomorrow, we will blend it with little a fruit to cut the tart.

Took a good 5 hour nap. Woke up sore and sideways on the bed. Not sure what I dreamed about, but it must have been serious.

Now, I have been up about 5 hours. I was ready to go to sleep but I can’t sleep. There are hours when I am alone and have no one to talk to. these hours are great for writing about my day.

Don’t get into your head during these times. It is easy to doubt my importance on my abilities from this bed. I feel like a bad mom from here. But I remember, I raised a strong girl who is dealing with this like a champion.

I am going to bed.

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