Disa - what?!?!

"I DON'T HAVE A DISABILITY!!!!!"

That's what I wanted to yell at the HR guy on the phone today when  I was talking to him because I was wearing sunglasses and a visor at work.  It just freaking headaches that if you would put in some environmental friendly lights in you'd have a lot less people with headaches working for you.

I work in an environment where I have a clear understanding of the ADA and advocate for those to seek out it's benefits.  Use it, I say.  Talk to a representative, you never know what help it can provide and even a little help is good.  However when I need the help, the last thing I wanted to do was get HR involved but I'm pretty sure my supervisor was like about to get in trouble for letting me get away with stuff.

Why is that?  Why are we willing to say get go help but never seek it out ourselves?

Gosh, I fuckin' have a disability.

Somebody That You Used to Know

I'm trying to put into words how I feel, but I can't seem to find them. Which, let's be honest, thanks to our friend Topie, isn't that real difficult these days.  I know the words I would use to describe the past week or so would not be good words or happy words.

Frustrated.  That's a word.  Or frusterated as I always say to try and un-frustrate me.  I'm at the point of being so frustrated of having no firm answers of what is going on with me outside of a diagnosis that I'm reaching a breaking point.  The constant high pitched ringing in my ears - oh my god - I want to stab something in my ears so I can be deaf.  Or the fact that when I have my eyes open it feels like someone is pushing in on my eyeballs.  It hurts, especially when there is light, and I just want to sit in a dark room with my eyes closed all day every day.  I want to know which doctor I should be calling when something isn't feeling right and why the hell isn't it just one!?

And you know what would be nice, to hold up my neck and head all day without having to kind of manually think about it, or just not look at my desk at work like it's the fluffiest pillow in the world and I could just lay my head down for just one second.  Seriously I'd be like Dorothy in the poppies, sleeping in two seconds.  I bet my shoulders would feel fucking fantastic too.  To hell with it, I'm just done being vertical altogether.

I'm frustrated that the pain I'm feeling makes me want to be a total bitch to everyone and lash out at them.  "Seriously!?!  W-T-F are you thinking!?!"  Obviously I'm biting my tongue and not saying anything, it's not the fault of those around me that I feel the way I do.  But of course my Inner Bitch is in my head going, "why do you always have to be nice, why don't you speak up and say something once in awhile?"  The Inner Bitch should just be happy with the  'I don't give a fuck' moments I've let her have.

Can you imagine how frustrating it is to want to just stay up in bed, all curled up in pi's, maybe read a book or surf the internet, and gorge myself full on NCIS and Law & Order: SVU marathons on USA all but instead having to work and spend time with family and friends and a social life? And to know I'm supposed to want that but honestly I couldn't care less.  Except that I do care.  I want all of those things, I love my family and friends.  I enjoy being busy with a full social calendar and can't wait to add more to it.  Plus I started online classes to get my MSOL - which I'm super excited about, except it's only the second week into a 50 week program and I'm losing my motivation already.  Not my motivation but...

To think a full thought.

I've crashed and hit the bottom folks.  This is what my depression is and what it looks like.  Ok, well this is no where really near my bottom, but it's the first real low I've had in awhile. I keep trying to focus on Dr. S words from our last session, to focus on the positives, and goodness my blessings are so many I feel ungrateful for feeling bad about how I feel.  Then I feel guilty for feeling guilty and that doesn't make me feel any better.  Ugh.

Harlee would tell me I would need to talk to someone about how I feel.  I'm pretty sure all I do anymore is talk to people about my stupid fake tumor that they are sick of hearing about it.  I don't want to bother anyone.  Its not like anything will change.  My NO appointment will still be 17 days away.  I will still be in pain and frustrated about it.  Maybe just getting all of this out into the vast cosmos that is the interwebs will help somehow.

I just wanted to be honest one time.

Merci - Gracias - Grazie

I hate compliments.  Receiving them anyway.  I LOVE to give them out.  Maybe I should be a little more specific, I hate receiving verbal compliments.  I shudder at the thought - literally just shuddered.    Receiving compliments make me incredibly uncomfortable.  I don't think its always been like this, but I can't remember when it started.  I just know if I have to receive a compliment, written is perfectly acceptable.

I say this because as I've been on my steady diet of drugs for depression and fake tumors I have been losing a lot of weight.  It happens when your medicine cabinet is filled with side effect appetite suppressant inducing drugs.  Really, who needs to eat?  So when one loses weight, one tends to get compliments.  Shudder.

Sure, yeah it's nice that people noticed but what did I do?  I was lucky enough to have enough issues with my brain that I had to be medicated.  Unlike my one freaking amazing friend who has busted her butt to lose weight the right way for her wedding this May and looks fantastic!  Or my entire team at work that eats right and works out.  I'm not doing anything.  I don't know that I deserve attention for that.

Harlee:  Amanda, haven't you made changes to your life as well?
Me: Well, I guess.
Harlee: What are they?
Me: Well since I started on the medication I've managed to keep my food portions relatively low.  And I cut out pretty much all sugared drinks.  And because of my own personal sequestration budget, I am not eating out as much so I'm eating better foods.
Harlee:  Yes.  So you are doing something.

Ok, so maybe I am doing something but I still feel like its a little bit like its cheating.

Giving compliments though, now that's some fun.  I try to find at least one person to compliment every day.  Today one of my coworkers had this fantastic green scarf, just loved it.  I think I am so conscious of giving out compliments because I am so self-conscious of receiving them.

I know why I have a problem accepting compliments.  Maybe not so much how it got started or the when it started but the why I do know.  But is the why really important?  Probably not, not really.  Harlee has told me I need to practice saying "Thank you." when I receive a compliment.  Just a simple thanks with no qualifiers, not buts, no excuses.  I haven't mastered this yet, not even close.  I still want to run and hide every time someone compliments me.

So, in case I ran and forgot to say it - THANK YOU!!!

 

 

 

 

 

Who's up for a little decapitation?

This only barely scratches the surface of how I feel tonight.  Please, come come decapitate me.  I'm totally cool with it11

It's A Whole New World

"Hi Sweetie!  I was talking to one of the Doctors here in the practice and he told me that with the thing you have you should avoid foods with Vitamin A in it.  For example, if you like carrots, you really shouldn't eat them now because they can give you headaches.  Call me back.  Love ya"

That is a voicemail I received from one of my best friends.  Seriously I have the most amazing friends in the world.  But it's stuff like that that makes fake tumors so crazy!  Why Vitamin A? You'd think since Vitamin A is good for the eyesight you'd want those with IIH consuming carrot juice and having spinach salad every meal as the worst thing that will happen to me is that I could go blind!!!!

Everyday it's like I'm learning a new thing about PseudoTumors or a new thing about my body and how it works now.  I kind of feel like I'm going through puberty a second time but this time I know I won't get awesome set of breast once all is said and done (the one good thing my mother passed down was a good rack!).

So aside from learning that the Cobb Salad from TGI Fridays on Christmas Day was the last salad I am probably going to have for awhile (at least it was pretty good), I've learned

• that I'm going to have a minimum of three experiences a day where I have these insane, borderline painful, tingling feelings in my fingertips and sometimes in my feet.  They will absolutely happen when I come inside from the cold and then will randomly happen during the day once or twice.  I hate this because I can't really use my hands until the feeling subsides which can take a few minutes but I always try to anyways and I end up just making things more difficult.
• SQUIRREL
• Pop tastes flat to me. I will still drink some but honestly, I just stick to water now or hot tea.
• it is entirely possible I may be leaking spinal fluid out of my nose.  This is called Rhinorrhea.  There is surprising very little information on this symptom.  I'm going to do more research but the flow seems to have slowed down recently.  
• that there are an insane amount of different type of headaches one can have and they can mean different things.  
• SQUIRREL
• that either A) the drugs alone, B) the drugs and visit from every girls favorite Aunt, or C) PTC in general has absolutely killed any energy I have and there are not enough hours in a day for me to sleep.  I am hoping it is answer B so I know to plan ahead monthly.
• OMG LIGHT! I pretty much hate all light now that isn't soft lighting or natural.  My monitors on all electrics are about as dim as you can get them.  Embrace the dark!   
• In case you hadn't picked up on it, I'm easily distracted.  And I'm not talking my normal "oh look Penn State just scored a touchdown YAY let me continue our conversation" distracted.  I'm talking "oh there is a dust mite, pause, oh yeah I was talking to you, wait what we were we talking about, pause, oh yeah I remember now let's continue the conversation" kind of way.  This is not always fun.

This is only the beginning of what I am learning.  Who knows what I'll learn when I meet the neuro-ophthalmologist in February.  

Do You Hear What I Hear?

I  am going to describe something and then I want you to close your eyes and and imagine it.  Got it? OK.

You are hearing of a bit of a humming or vibrating sound, maybe as if there is an appliance running somewhere.  On top of that you will hear a high pitched sound - a timer or an alarm going off perhaps.  Then occasionally you'll hear a whooshing sound matching time with your heart beat (or you'll hear the bass of your heart beat).

Now close your eyes and imagine hearing those sounds for about thirty seconds.  Go ahead, close them.  

This is what I hear every moment of every day.  Having this noise in my head makes it incredibly difficult to concentrate let alone hear when someone is talking to me. My poor coworkers call my name to get my attention and I can never hear them.  

They call this Pulse-Synchronous Tinnitus and its one of the major symptoms of Fake Tumors.  I know I am missing so much of what is going on around me because I can't hear.  The worst is at work.  I am missing out getting to know my coworkers better.  These amazing people are sharing stories about what is going on in their in lives and I can't hear half of it.  I don't want to ask them to repeat themselves several time just so I can hear the story or to speak up so half the floor knows their business.  

No, either I nod politely or continue working and do not participate, coming off as I don't care or I am too good for them.  

Sometimes, when I hear something I have to pause and run the sound through my head again, to play Real Sound? or Fake Sound? game.  

Real sound, fake sound, it's so funny how one can take advantage of something and then when it's gone, crave it.  For me, that is silence.  I never appreciated silence.  I slept with music playing, tv was on or I needed to be wherever there was people and noise.  Even if it was the sound of my Dad snoring (that was the main reason I needed music to sleep LOL), and of course I had a playlist for studying.  Walkmans.  Discmans.  iPods. I don't think I could tell you at any point in my past where I willingly spent any significant time in silence.  

What I wouldn't give for a few minutes of silence.  Clean, crisp silence.    No noise.  Just me and the thoughts in my head.  

Words I thought I'd never hear.

Happy New Year

Well 2013 sure ended on a, well, it ended.  I don't even know how to describe it.  

And it certainly seems 2014 will be bringing me something new.  

However, if the last few days of 2013 taught me anything it's that I have been amazing lucky on my journey so far.  Just know that the people that are brought into your life, or to whose life you are brought into, it's done for a reason.  That reason may not be known right away - it could take years before that person who is now a friend becomes someone to turn to.  Or you may be the link between a two mutual friends who share a common bond that can connect over a tough situation.  So don't ask why.  Just be glad that the people who are in your life are in your life.  Even if they are horrible annoying younger brothers.

The last day of 2013 also taught me that sometimes going back before moving forward is needed as a jump start to face the New Year unafraid.  It's the people in the past who remember who you were at your best, the younger, stronger version of you and they can remind you of the person you want to be again, just older and wiser.

So c'mon 2014.  I'm ready for you.