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

Have you tried-

Featured

wp-15494365568433974925584995652433.png

“Have you heard about-” “YES!”

I KNOW I have covered this topic before, but it is one that just keeps coming at me and so I will keep bringing it to the attention of all who dare to read on.

See, I have some cognition issues and memory loss, but I have not lost my (above average *ahem*) intelligence.  I am able to read Al Gore’s Internet like everyone else and I am often looking up studies and medical information.  I have heard about memory medications in testing.  I have heard about therapies being used to help with brain damage and PTSD.  I have heard about the new findings concerning how our gastro microbiome affects how we think when it is changed.

Chances are, unless you have Chiari or are in neurology, I know more about my body and what medical science has to say about it than you do.  Just like you know things concerning your body better than I do.

HOWEVER

Let’s get to the real problem here.  You somehow feel entitled to give me medical advice.  Somewhere in your lifetime, you gained the gall to tell people how they should care for themselves when you chose to not go into the medical field.

Now, I do have friends that are in the medical field in specialties that give them the proper background from which to draw and share information that might be beneficial to my health.  The thing is, they realize that many times, I need them to be my friend and NOT my doctor.  I need them to listen to how the pain affects me and tell me that they are there to listen to me.  If I do need to ask a question, I will, but they seem to understand that I have a team of doctors already working to help me.

Advice is usually appreciated only when asked.  Don’t be ‘that person’.  The one that I have been talking about the whole time!!!

*P.S.- ESSENTIAL OILS ARE NOT CURES!!!!

Neurologist And Neurological Mess

Featured

wp-15494353610181843466865533528539.png

To the Neurologist!

I love my regular neurologist, but I FINALLY got an appointment to see my memory neurologist and I couldn’t be happier.  I called on February 4 and got the choice for an appointment on the 11th or in April.  Trust me, it was not a hard decision.  I had to reschedule another doctor appointment, but it is worth getting to see this man who I have prayed so hard for.  I and really excited to see what he has planned for my next steps.

Going to the doctor is usually not for a fun purpose, but I am just hoping for a productive outcome.  I know that we have a ways to go, but I hope that we have made clear progress in some direction that he can work with.  God willing, we will start on the road to Cleveland and see some super specialized doctors.

Be thankful if you have the opportunity to see doctors and get the care you need.  I know my visits to this particular doctor run about $600, so be thankful for every insurance and discount…I KNOW I am.  I would never be able to afford this care on my own.  Like I have done, use every option and benefit available to you to better your health.  As long as it is in your budget, go to physical therapy twice a week and do the exercises at home.  It helps with just daily mobility and the program is tailored to your body by someone who had to do some schooling.  See a dietitian or nutritionist to help make reasonable meal and food choices that will assist with specific health goals.

I am not saying to abuse the system, any system, for your gain, but if you need help doing your hair, physical therapy helps in a longer term way.  Using your body in a healthy way and eating well can help keep you off a lot of medications later, so take care of yourself and use the resources available to you.  This includes mental health.  It is OK to see a therapist.  They can be very helpful and they aren’t always long term.

Last, if you think something strange is going on in your body, talk to your doctor until they listen (that’s how I got brain surgery!!) because sometimes it takes some convincing, but eventually, you will get the right doctor and things will begin to fall into place for you.  I could have suffered serious damage to my spine had I let the pain continue.  I was lucky that it debilitated me and I was forced to go to the doctor.  Use your resources.  That $10 visit cost about $150K in hospital and surgeon fees, but my insurance at the time paid 100% for hospitalized, necessary surgery.

So, That’s my story.  Expect an update (outside of normal release days) about what happened!

Seasonal Body

Featured

wp-1528810843590891734348038145584.png

My Summer Body is Snowman Shaped.

I tried on my swimsuit from last year.  I have not gotten smaller, that is for sure.  A stick in my side is my weight right now.  Not because I want my summer body (which has been missing for AT LEAST 15 years, put out an APB) but because I can feel the excess weight on my knees and ankles.  Still, I won’t lie, I would love to have my awesome body back!

So, recently I took a Functional Capacity Evaluation.  Normally they are used for worker’s comp or for return to work after an injury to make sure that the employee is sufficiently healed and strengthened to safely do the work they were doing.  In my case we are using it as a baseline.  I obviously can’t go back to being a warehouse worker, however I was happy to learn that physically I am able to do some kinds of work.

More importantly, it has given me a baseline to use to put together a workout that is good for tackling the areas that I really need to get stronger.  The test is laid out in such a way that I can easily read it and pull information to use, so I think that is probably what I will do.

More importantly, I want to send out the message that it is ok to want to change your body into something healthier.  It is ok to be happy with your body just the way it is.  It is ok to make little or great changes as long as you talk to a doctor first and do it safely.  There are so many messages out there about how you you should look, but focus on how you want to feel.  That will get you much more satisfaction from whichever route you choose.  Know that I am standing (sometimes sitting) behind you, rooting for you and your continued success!

Survival Mode

wp-1519419632954-254251414.png

Not seeing much there…

In therapy this week, my doctor asked what my hopes and dreams were or my future ambitions.  I must admit, I was not prepared to answer such a question.  Hopes?  Dreams?  They died when my brother was murdered.  I laid them to rest and I don’t even visit their gravesites.

Ambition was always flexible.  I could work toward any goal as long as I was able to plan for it and stay on top of it.  Ambition has been in a vegetative state for two years.  It isn’t quite dead, but it’s hooked up to a lot of machines to keep it “alive”.

Now is about survival.  What do I have to do to make it through the next 12 hours? My phone will let me know when it is time for medicine, when to reorder an Rx, when to write in my journal, when to log my headaches, when to go to the doctor, where I parked the car, how to get from here to there, what my calories and nutrients for a day should be, when I have been sitting for too long, when to practice Italian.  The list goes on and on and on.  Basically, my phone told me to sit down and write this post.  It was time.

When life starts being that constrictive, it is hard to plan outside of that especially when you throw in the uncertainty of not knowing how you will feel any given day and for how long or will this time end up back at the hospital.

When I look at my future, I see a cloudy mass, dark with uncertainty.  Will I be able to go back to normal?  Will I degenerate? Will my memory come back?  Will I be able to work again?  Will I be able to afford a car someday?  My own house?  Nothing.  Out of a 15 specialist medical team, all of them are pointing to my brain as the culprit.  So, next I go to the Cleveland Clinic Lou Ruvo Center for Brain Health and pray that they can offer me a diagnosis so at least I know what I am up against.

So, I told her, I don’t see anything.  I don’t hope for anything anymore.  I just live to survive.  Maybe one day that will change and I will be able to enjoy the wold I live in and again dream of things and have hopes.  For now, I just have to take care of today, and that is ok.

One day at a time.

 

Enrich your life with The Life Of A Music Monkey

Me and My Anxiety

Anxiety is a world that I don’t think one can really appreciate without having traveled there in person.  I don’t even think that every who who experiences anxiety experiences it the same way.  For me, the voice in my head is louder and makes much more sense than the voices around me.  It reminds me of every failure, every worry, every fear, and anything else that could possibly go wrong in my life.  It is often the blinders that keep me on the path to mediocrity and the bit I chomp at when I am frustrated with myself for being my own beast of burden.

The upside?  It doesn’t have to last forever!!  With the right support system and some (a lot in my case) of therapy, you can begin to talk down the harmful voice in your head that is locking you inside of yourself.  For me, the most important thing I have done to help myself is to alert my family and let them know when  I am feeling anxious so they can monitor the things I say and help talk me down off of mental ledges.  I used to be ashamed to admit that I had these feelings, but my family doesn’t judge me and they genuinely want to help me get to a place where I can be free to enjoy my life without the shadows of my mind clouding my thoughts.

Check out The Life Of A Music Monkey for more fun readin’ about my life with Chiari Malformation!!

Pick A Problem!

wp-15182413026421718171101.png

Who has it better?

There are times when we compare ourselves to other people, but we really only see what other’s allow us to see. Behind closed doors there are often tears, pain, misery, sadness, loneliness, dysfunction, and a host of other issues. My official list of symptoms is 27 complaints long and it has just embarrassing stuff on there. Things I don’t even share on The Life Of A Music Monkey and if you have been there you know I share some very intimate details of my life. Yet even I am guilty of looking at someone and wishing I “only” had their problem instead of “all” mine. Like I don’t know that we all have our battles to fight. As if I ONLY have one symptom. It is that piece of me that kinda hopes that other person isn’t doing as bad as I am…and so I want to be doing as well as I imagine they are. The mind is a crazy place to be sometimes, bit even I come back to the reality that we all have our low points and when my pain is at it’s worst, I wish the most to be someone, anyone else who isn’t in my pain. Still, I bet I would be surprised if I ended up in someone else’s skin and had to deal with their problems be it health, financial, emotional, or otherwise. I have enough problems to worry about. I think that I can just be myself and that is OK even if it sucks sometimes because of pain. I could be lonely or mistreated, so I am really blessed.