My New Friend!!

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My Little Friend

I have not talked about her much (I don’t think) but for Christmas I was given a Shillelagh because I couldn’t find a cane with a handle that didn’t hurt the palm of my hand.  Eventually, I guess my stepdad found one that was genuine and the correct height, and he got it for me as I was using my canes more and more.

I was excited to get it.  I know that it was Irish in nature, so I started doing some research so that I wouldn’t be ignorant of the beautiful walking aid I received.  Turns out I received a weapon and I am keen to use it someday on that one person…

Anyway, mine is made of the traditional blackthorn and the club handle is a little larger than my fist.  However, the shape of it fits my palm and causes less pressure so I can use it for longer periods of time.  The bottom is thorny, black, and has a copper tip.  We have covered the copper tip (as that is a tip off of it’s weapon status and weather stability matters) and I try not to herd people with Shanaylah (her given name) it actually gets people moving when they decide to clog up hallways and other places.

One of the great benefits of having it is that I can go for walks at night and I am less likely to fall and I have gained a pretty good idea of how to defensively wield Shanaylah.  Prayerfully, that time will never come, I like peace.

Now I am pretty much always accompanied by my third leg and I am so thankful for it.  I know some people don’t like the idea of having to use a cane and I understand the feeling of wanting to just walk.  I have no shame anyway, so using a cane just allows me to live a little better than without it.

I know it is jarring to no longer be able to rely on a part of your body to behave as you have always expected, but at the very least, if you have to get a walking aid, find one that fits your personality and it will blend right in eventually.  The only way to take back control, it so assimilate this new thing into your life and control it for your benefit.  I don’t know if that sounds harsh, but I want so badly for people to know that there is no shame in doing what you have to do to live your best life.

Right now, I am a scared mess because I can’t control a lot of stuff, but with Shanaylah I am able to control my mobility and I have something there just in case my leg gives out so I don’t fall.  It is not what I wanted for myself.  I have been in physical therapy for about six months now and it has only gotten worse with the seizures.  Thank goodness I have a way to get around, and now it is awesome and a little dangerous.  We’ll see if they let me into the federal court with it.  If not, trust me, there will be a post about it!

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Lies I Tell Myself: VI

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Lies I Tell Myself: I don’t need to write that down. I’ll remember!!

One of the biggest problems that me and my neurologist struggle with is that in the heat of the moment, I don’t really remember that I have lost the ability to remember much, so I think I will remember like I used to, but later I learn the errs of my ways…again!  The worst partis constantly feeling bamboozled by my brain?

I have a phone that takes notes in at least four different ways, I keep a memory log (which I often forget about!), and I always have paper with me.  No reason I should not have access to all of the information I receive, but that old part of me just swears that we got this, meanwhile, my whole brain is on fire as I think too hard about what it was I forgot!

This process has been repeating itself since as long as I can remember…which isn’t long,  so I can’t really give an answer.  I suspect that it has been at least since the surgery, possibly since a little before.  Memory was one of the first major symptoms behind the pain and nausea.

My phone calendar is full of therapies, appointments, naps, meds, and more therapies.  I am trying to get better at remembering, but am considering having a pin made that says “if I didn’t write it, you didn’t say it”.  Not sure how people would take it.  I realize my inability to remember their super important information is anathema in their eyes, but I am not the person everyone remembers and wants me to be from 2014.  Trust me, if I could go back I would, but, that isn’t how it works, so here I am.  Thinking I am in 2014 in my head (because time hasn’t really moved for me) in terms of cognition and 2016 in terms of time.  I feel like the world went on without me when I remember that I forget.  Every time I remember that I can’t drive it seems like I was driving yesterday (I was not!) but it seems like it.

These are the worst because they bring up three years worth of misplaced emotions and fractured memories.  I can’t drive because someone drove into the back of my car as I turned into church to use the restroom.  Such a simple act changed my whole life.  Ruined my dreams, stopped and reversed my vocal progress, and made into what I am today.

However, the blessing is really in the fact that I don’t have to carry the weight of my emotional burden everyday because I just think I am on a day off from work or it’s the weekend.  It still has not permanently seeped in yet that I don’t actually work, but that is ok!  Things take time and hopefully as my life shifts I will just find a new “work” that I do and maybe keep a note telling me to write things down!

Top Shelf Pain

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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!

 

Have you tried-

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“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

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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!

Feeling Hot, Hot, Hot!

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Chiari Burns

I have been cooking for the better part of 30 years.  From simple things like toast and how to make butter to cakes and cookies to candies and roasts and pies.  I learned how to make almost everything from scratch from bread to pasta to egg noodles, sauces and stocks and desserts.

As I learned how to cook various foods and use different tools, I was taught the safety rules of everything.  How to properly handle sharp and hot things were constant drilled into me from a child until I was a teen and began working in a restaurant.  I had to be safe because I used bread knives (which can cut you) and an extremely hot espresso machine.

Not a week ago I was boiling pasta and I just grabbed the pot handle, luckily I caught myself.  A day or so later, I was going to check the headlamp in our truck and I turned it on.  Now, I have worked on cars since before I had a child, and I know better, but with my right hand I grabbed the wiring harness that connected into the bulb, and with my left hand I GRABBED THE BULB!  Then, with my right hand I juggled the wiring harness to see if it was causing the sporadic outages until I felt a thousand suns on my left hand.  I opened my fingers and there was skin burned unto the bulb, so it was definitely getting changed.  I turned off the truck and the lights and went and got an ice pack.  Ever curious, I took my three screaming fingers and the ice pack back out to the tuck and grabbed the bulb housing (where I SHOULD have grabbed) and examined the coils in the glass.  They weren’t perfectly aligned and some look like they somehow got turned around.  Made sense, it probably wasn’t getting a solid connection with twisted coils.  I examined the rest of the bulbs with the lights off and put the housings back together so we could go to the store and get the bulbs, then I replaced them later.

However, this is a serious issue that seems to keep coming up, especially in the kitchen.  I can take something out of the oven, take the oven mitts off and turn around and grab that dish.  I bought an aloe vera plant because I am a menace to myself.  I grab the handles of iron skillets that I KNOW have been on the stove cooking and it’s like I have no thought about it at all.  This is one of the reasons I have slowed down cooking is because I don’t want to really hurt myself or anyone who may be in the kitchen with me, so I try to wait for days when I feel good and someone can still be there with me to keep an eye on me.  I think of it as another small dignity I have given up for the good of myself and those around me.

This process of going through memory loss and all that we are doing to try to preserve what is left is difficult and we all have had to make sacrifices that really were awful, but needed to get to get this far.  We all plan to keep making them until we have answers and nothing else has to be given up!

Lies I Tell Myself: III

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Lies I tell myself: I am just hungry

I think it is unsettling to have pain and not have a reason for it, so, here is another lie I tell myself about my headaches!  I just need to eat something!  I just ate?  Well, I didn’t eat enough!

It is crazy to think that eggs and bacon are going to fix what is wrong with me, but something about my memory problems gives me this daily dose of hope that things are going to work out just fine once I do a certain thing.  Then, when it doesn’t work, I am forced to accept that hunger was not the reason for my pain.  It is OBVIOUSLY some other thing that I believe I have control over.

Just wait, I have a whole purse full of lies that I tell myself.  I will keep telling them to myself because it keeps me moving forward.  I don’t want to lose faith, so I choose to believe that one day, one of these things is going to stop my head from hurting and I can just be thankful that the pain is gone.  Like, I would love it if God gave me healing eggs, but if He chooses to allow me to go through this insanity, at least it is interesting and full of plot-twists.

If you are struggling to keep afloat, remember that there is always the chance that pain can go into remission.  Whether you share my belief system or not, people have experienced pain relief through various methods and sometimes it is spontaneous.  If you don’t get the relief you have been searching for, don’t let that keep you from enjoying however much of your life that you can.  if you can only do a little, do it well and be thankful.  I know it seems cliche, but thankfulness can have a terrific effect on how you view your situation and once you spot a little bit of good, you are likely to find more and more.

I hope you find the joy you seek, even if it takes time.  Know that I am on the same journey as are millions of others in the world.