Top Shelf Pain

Featured

wp-15496053735675370791437289674557.png

Upgraded Headache

I admit that when I am in pain and I have to go to church or a meeting of anything important, I will put a lot of effort into my makeup.  At this point, I use Swarovski flat-backs to give a good 3D sparkle.  I have used up to three layers of under-eye concealer just to not look like I got punched in the eyes by lack of sleep.  I use enough foundation to secure a skyscraper and enough concealer to wipe away entire countries.  The I pick a vibrant blush and put it on my cheeks, forehead, tip of nose, and chin.  I blend it well, usually you can barely tell it’s there, but it allows me the pink “alive” look as I sometimes look like I have been sleeping for days (because I have). I use highlighter with reckless abandon; I need EVERYTHING to shine from some angle.

The last thing I choose is my lipstick and that is dependent on the colors I am wearing and how much I want to command attention.  I have about four shades of red that I love, a pink that is like bubble gum but looks great with Spring colors.  Purple for when I wear green.  Then all my special shades from just ‘sparkle’ to matte black.  I usually try to stay reasonable though as I do have to look professional more often than not when I bother to wear makeup.

Here’s the thing that people have a hard time grasping; I am doing it so that I can just feel better about the war in my body.  It has nothing to do with compliment fishing ot trying to outdo people.  I had people asking if I took clients?!  I have not done my makeup because I feel great.  People associate looks with health, and that is kinda natural, but it really isn’t any reason to say anything out loud.

People seem to believe that their thoughts on my looks or condition have some sort of positive affect on me and they just don’t.  I don’t care if you think I look nice and so I must be feeling better.  I don’t care if you think that I look like I am improving.  I have an agenda that does not include you nor your thoughts on anything.

Does that seem harsh?  Guess what?  Don’t care.  See, I have seen enough of people to know that the ones who really are looking out for me can see my tired eyes through the eye designs.  They can see my foot dragging no matter how well I try to hide it!  They ask me how I am doing or they just say hi and give me a hug.  They draw no more attention to me than any normal person wants.  On Sunday, yes sometimes I draw vines with flowers on my eyelids and I give myself golden freckles, I do it because it makes me smile at myself every time I see myself in the mirror or in a reflection.  It is actually great is it brightens up someone else’s day, but really, you don’t have to feel compelled to tell me and then directly correlate that to my health.

It is very possible that I am in the minority because I also cannot take a compliment.  Like, a gentleman at church asked me why I wear makeup when my face is naturally beautiful (his words, definitely not mine!!) and I asked him why men thought that they had the right to comment on how I choose to look?  I told him that he had a wife and SHE is who he can ask about makeup.  He said she doesn’t care about his opinion either.

Let it be a mystery.  Stop putting women, especially women with hidden illness, in the uncomfortable place of telling you to mind your own business.  Ask your sisters.  Ask your mom or wife.  If you get a sassy answer from them, DON’T ASK OTHER PEOPLE!  Find a different rabbit hole to dig down.  The importance of looks has been socially ingrained into our psyche and we can get very emotional if we really try to figure out why we are wearing Jazzberry lipgloss and not Hot Tart lip creme, you might open up some emotional scars, so just STOP!

Just in case you need some kind of answer, I will leave a few:

  • Because I am dehydrated and my skin looks like an arid wasteland.
  • Because I am in the point in my cycle where my face turns into an angry minefield of pus and devastation.
  • Because I FELT LIKE IT, WHY?!

Goodnight!

 

Advertisements

Pain Bomb

Featured

wp-1525833846916..jpg

I have been waiting for you to have a good day! (Pain Bomb)

Recently I have had the joyous occasion to have several days on little to no headache.  I still have the nausea and pressure in my head, ringing in my ears, but that weighty headache let up.  I simply can’t help but think that my brain is plotting its revenge on my for not entertaining the normal amount of pain.  For me it has been nice to go to church and not fake smile (much) and enjoy a day of pedicures and shopping, even dress up to go to therapy.  It hasn’t even really mattered that other things hurt, the headache subsided.

Sure as the sun will rise, I will get another headache.  Probably sooner than later, but hopefully later because life is pretty nice without that burden.  Now, I know this probably sounds kinda wild coming from a Christian as I should probably be believing that God is going to miraculously heal me.  If course I believe He can.  Still, if I am more valuable to the world in this state of being, then I will use it to spread awareness and help other people.

I suppose my point is that anyone can be afflicted and we shouldn’t use religion to brush away common sense or medical treatments.  We are each free to make our decisions, but we have no right to dangle carrots in the faces of suffering people.  Religion is not a baton to beat someone who is down.  The ultimate goal should be to love and encourage one another.  Most importantly, to listen to one another so we can now what they are feeling.

I know when I am feeling a headache coming on.  No one has the right to question that, or my faith, or anything.  I have spoken to so many people who have walked away from church or organizations because they were not heard.  People spread their own ideas of how you can be healed or what you are doing wrong and it feels terrible to be seen as someone who isn’t even helping herself.  I hate it.  I know other people endure it and probably hate it too.  Just know, it is ok to educate people and to walk away if they choose not to learn.  It is ok to stop someone mid-sentence and let them know they are too far across a line already.  It is ok to stand up for yourself and straight out tell people exactly where they are messing up.  You are not inferior to anyone, so you are not required to stay and listen to nonsense.

You know your body, and if it is showing signs of being overworked or tired, listen to it, not to people.  These are the same people who will complain about their own back when you ask them for piggy-back rides because you are tired or in pain. They want the best for you but they don’t know so just shut them down and tune them out.  It’s healthy and they can maybe learn about you with the added bonus of being quiet.

If you are the one scratching you head and mumbling about how you are just trying to be helpful, just relax.  The most helpful thing you can do is let your friend who is hurting talk and don’t act like you know more about their condition than they do.  Be a friend, not a doctor.  We know your intentions are good, but your degree in anything but neurology disqualifies you from giving cound medical advice to someone who has had brain surgery.

I know it seems harsh, but the reality is, being up front with someone in the beginning is easier than trying to fix it later.  If you have a worthy relationship, this will not harm it, but it will make it better because you will understand each other more.  We should grow in our relationships, and that can hurt, but it is worth it!!

All this being said, I feel the telltale heaviness inside of my head that precedes a headache.  I expect I will wake up with one but I hope that is not the case.  If it is though, I have had an awesome few days and I can live with that.

Laundry Mountain

wp-1524948828489..jpg

Exploring Laundry Mountain

I have done laundry since I was a child.  I did not grow up with my mother doing my chores for me.  It’s just one of those parts of life that takes a bit of time, but usually isn’t the worst thing.

Increasingly, I lack the energy to do the laundry.  I only do my own laundry, I expect my daughter to wash her own stuff (mom is not spelled m-a-i-d, as momma used to say) so it isn’t like I have an unreasonable amount of laundry.  I wash once a week, so it isn’t like I have a build up.  I just have laundry problems now.

Problem: Forgetting I washed clothes in the first place.

Solution: Only wash when staying home, leave the laundry room door open to hear the buzzer.

Problem: Leaving clothes in the dryer.

Solution: If I have the energy, I will just hang everything up to dry so it’s already on hangers and not wrinkled.  Otherwise, stay home, leave laundry room door open to hear buzzer.

Problem: Clean clothes pile up.

Solution: If I have made it past the first two problems, I am probably ready to take a nap.  If I can manage, I separate the clothes that need to be hung up and I fold everything else.  FOLDING IS TIRING!  I just deflate quickly from folding.  Then I lack the will to hang up anything.  Life starts to look like this:

IMG_20180428_195626.jpg

Put yourselves on hangers!

I took a nap beside this pile of clothes and hangers.  Imagine my dismay when I awoke and it was just as I had left it!  Betrayed by my own clothing.  It was sad.  It took 8 hours to FOLD two loads of laundry.  Then I slept all day the next day.

It seemed like such an insignificant task my whole life.  Now when laundry day comes, I am racked with anxiety about if I will be able to complete everything.  If I have a headache, I already know the answer is no.  If I don’t have a headache, I can probably do it, but I will likely get a headache.

In the end, the laundry has to be done.  Not just because I have to have clean clothes, but because I have a daughter that looks at me to see how I handle my struggle.  If she has to watch me struggle for hours, then I am teaching her that the struggle is real and we have to go through it, but we can get through if we persevere.  Sometimes the solution is to go slow and be methodical and cry if you have to because laundry is tedious and frustrating yet it can be done.

So, for all my people out there who feel like the smallest tasks are the biggest problems, take heart and know that you are not alone.  I know it is hard to not compare yourself to the before times or to other people who can do more, but we have to remember that we are individuals who have issues that can impact any or every part of our lives.  We don’t have to feel less-than because of it.  Of course it is easier for me to type that than to live that out, but it is something I have been working on daily.  I encourage you to do the same if you are able.

For the people reading this who don’t really understand what the big deal is, I as you to imagine only being able to complete 3 tasks a day before you need a nap.  So, after shower and breakfast, you can do one more thing.  Pray that it isn’t laundry!  It could be a doctor appointment, or two scheduled on the same day!  Now you are dead tired.  Le sigh.  Now imagine that every day you had to choose a certain number of things you could do.  Would you skip your shower to get something else done?  Now, imagine that 1/3 of the time, you aren’t even going to be able to get out of bed except to go to the restroom.  Those 3 things you normally do are now piling up.  It feels like this for some of us.  it’s not a great feeling because we really just want to lead “normal” lives, but we hold out hope that one day we will find answers…or at least that someone will feed us and hang up our clothes so we can do something fun too!

Catch Them All!!

wp-1522047166289..jpg

Zzzz’s, Catch them when you can!

What a wonderful thing naps are.  They are like nighttime sleeps but shorter (usually) and at a less expected time of day.  Say 10am.  I wake up pretty early, so by ten, I am ready!  I can wait, but the longer I wait, the longer I will sleep.  By 8pm, I will just sleep until the next morning.

It’s always needing naps that is the problem.  People feel like I maybe shouldn’t “need” a nap because I am an adult and my only defence is that I can’t say when my brain is going to stop being useful because it is too tired.  If I do 45 minutes of speech therapy I have to take a nap.  My brain becomes tired and useless.

If I study for an hour, my brain gets pretty unfocused and really only wants one thing.  Nap.  The sad part is that people really have no understanding of how the brain works.  even a little.  Enough to explain what is going on so they understand would be a good start.  People who have never been so mentally worn out that they can’t think really have no basis to even believe it is possible.

Still, whether someone believes it or not, I need my naps.  This week I have been averaging 13.5 hours of sleep including night time and naps.  That is over half my day.  I miss the days of sleeping for 3 or 4 hours then 20 hours of energy and magic but now I have accepted that I work at a much slower pace.  I might accomplish two things all day.  some days one or both of those things might be doctor appointments.  I had to learn that it was ok to be tired after appointments.

I imagine this is a source of depression for people other than just myself.  I am no doctor, but when you can’t sweep the floor or do the dishes because the mental energy isn’t there and the physical energy isn’t much better, surely many people would begin to question their current value relative to their perceived prior value.  They might try to do the chores but eventually their mind and body will win and they will feel bad.  This is the seed being planted.  I worked in therapy to get through a lot of my views of my physical abilities now vs. then.  I am really no better or no worse, I am different and that’s cool.

I just need more naps now, is all.

Mornings With Chiari

“Sleep well? Hee hee hee”

I have been having sleep disturbances.  I can’t remember how long they have been occuring.  Recently, I awoke from a nightmare where I couldn’t breathe and although I was now awake, I still couldn’t breathe.  It scared my sister enough to insist I call my doctor.  I now have to schedule a sleep study to find out more about my sleep apnea.  

In daily life, it basically robs me of sleep.  Then I am tired the following morning and I usually try to wake up by drinking coffee, but often, I have to take at least one nap per day, sometimes two or three. Being immobile for so long makes my joints hurt and keeps me from participating in life.  Hopefully, the sleep study will help me get better rest.  

Future for One?

wp-1480955165133.png

“I am gonna spend the rest of my life with the man I love!”                                                               “I am getting a headache.  I can’t wait to spend it alone.”                                                                    “I believe we have a date?”

2016 will go into my journal as a very forgettable year; I can’t remember most of it.  The things I can remember are worth forgetting (looking at you, election!!).  More than any other year, I have seen a large number of my friends get married.  I put so much energy into bettering myself and learning who I am and want to be, that I decided that a relationship was a drain of my precious, limited time.

As I look forward to 2017, I have not a single plan.  There is no more school.  There is no more work.  I have hour upon hour of free time to think about how I should have reached out and maybe went on a date or two.  It felt different when I was consciously decided to not date.  Now, I am getting ready for my disability appointment and I feel like that is a black mark.  I am no longer a productive member of society.  I do not keep a schedule.  I have gained weight since surgery.  I can’t remember much of what I hear of say.

Honestly, a year ago, I would not have wanted to date someone with these issues.  I didn’t have time for that.  Now I guess I have projected that onto myself and I don’t see how anyone would want to date me.  How would someone feel if I cancelled half of our dates because I “don’t feel good today”?  How would I feel?  How would someone feel if I needed another brain surgery?  Would they be willing to deal with me in a physically infantile state?

I have always worked the loneliness away.  I discovered how smart and fun I am.  I finally tapped into my true singing voice. I found a home in my church family.  I finally was feeling confident parenting alone.  I felt like a combination of all these things was enough to keep me asleep at night.  Now, I am awake at night, living with pain, and knowing that I only have 4 years until my daughter spreads her wings and I will be alone.

I hadn’t planned on worrying about this for another 30 years and I had hoped to not care by then.  I am no longer flirty.  I do not wish to bear children.  I could care less about shaving my legs.  I am just a girl who wishes it would all go away and I could enjoy my previous life.

That being said, I will be happy for my friends because they deserve to be happy and encouraged.  I will start attending weddings in 2017 (breaking my 20 year anti-wedding streak!!) and I will be a witness to their happy moments.  I will cheer for them and clap for them, and smile at them.  Then, when I go home and settle in after these events, I will thank God that I am alive and able to see that kind of joy and happiness.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Take My Bloods

Bag O’Blood. Diagnoseamatic 5000. Specimen deposit.

No illness would be complete without numerous tests and bloodwork is some of the most routine.  I went to the wrong place at first because in a medical district, there are so many places looking to steal your platelets.  I only had to wait about 10 minutes before I was taken to room 6.  I asked him how he got into bloodletting, he laughed as he explained that it was inexpensive and he doesn’t have any student loans.  When he asked which arm has better veins, I chose my left.  The veins are very visible and easy to get to, but they don’t produce.  He stuck my arm and after one squirt of blood, my vein quit.  I told him that “better” is very subjective.  He threw away the pitiful vial, and bandaged up my left arm and we turned to the right arm.  I told him that it produced well, but good luck locating a vein.  He put a double tourniquet and had me make a tight fist and he managed to find the buried vein and the vial filled up at once. 

I know this is kind of a weird post, but sometimes you have to find the humor in the most annoying moments.  I woke up today feeling like I was getting beaten.  My head hurts, I feel like I may vomit at any moment, I am tired.   Even with all of this, sometimes, I have to look at the brighter side and try to find a laugh.  Otherwise, I would cry a lot.