I was just reminded of something and I want to share because this an example of a MAJOR issue that people (mostly women) with AutoImmune disorders and chronic conditions face.

I was on the phone with my mom today telling her how great I felt.  She was pleased, and commented how great I looked when she saw me this weekend compared to the time before that (the headache of 2009 —yikes).  We both know the deal all too well…

That’s the thing with these mysterious illnesses: One day you can look and feel like a million bucks and people will see you and never ever be able to comprehend the misery you were living just a few days beforehand.

I can feel like hell unable to move from bed one day and wake up ridiculously well the next.  It is unpredictable and unfair.

I used to live in a big loft with six other people.  I was the only girl at the time and I remember one of the roommates watching me open my drawer of medication one day and saying clearly to my face “Wow Manic Depressive”.

It stung and it hurt my feelings so bad.  I closed the door to the bedroom and felt so awful I wanted to crawl under the wooden floor.  How do you explain this condition to someone?  Especially a young(ish) dude (no offense but most of you aren’t exactly models of compassion, willingness or understanding)?

Then I took a breath and realized why he thought this.  I had just been in bed for like three days with pain that kept me from speaking.  I didn’t even open the curtains.  It was a terrible time for me.  All this dude knew was that I was in the room for days and hadn’t emerged except to use the bathroom.  Then he sees me digging in this drawer filled with a variety of meds?  Understood.  Still, he didn’t have to say it like that…

The truth is that isn’t the first time something like this has happened to me. And each time it hurts because you feel alone and misunderstood.  And all you wish is for everyone to understand what it is you may be going through.

And so I continue to write about these very frustrating, very difficult times in hopes of spreading some understanding.

Today was a good day.

I was able to walk around while the sun was shining.  It felt amazing to feel good.  It is unbelievable how free and happy I feel when I am able to do the things I want.  Physically, I have felt so trapped lately that I am stir crazy on many levels.  I walked walked walked after a long yoga class filled with stretching and deep breathing. Aaaaaah.  Thank you.

Considering how great today was I am trying to ignore just how much my Kicker is hurting today.  I’ve told you before about how it moves, and on some days I am (almost) able to pretend it isn’t there.  Today wasn’t one of those days.

I woke up with a pain in my chest.  Luckily I know what this pain is.  (It has taken me a long time to figure out which chest pains to panic over and which are muscular).  The aching continues throughout the day and I am sitting on my couch right now actually gasping from how much this hurts.  Nothing I can do about it. Nada.

Titianium box trying to fit into a tiny squishy space = unpleasant.

I spend my life in waiting rooms. Today, eye doc because my vision has gotten worse over the past year. I’ve been here for an hour so far. I’m so tired of waiting (rooms). The tone, the atmosphere, the sterile blue walls, other people’s “waiting mode” all rubbing off on one another. It is unpleasant no matter how many distractions I bring to keep myself busy. I’m just so fed up. Exhausted. Annoyed. Frustrated. You name it. I try and stay positive but things are hard man. And I just want them to get easier please. I need lighter brighter days. I kind of feel like crying in this waiting room. That would totally make it so much more awkward than it is already. Actually I just cracked myself up picturing that…

Trying to equalize after the headache of 2009. WOW.

I feel like I am in an altered state.  Everything is a blur, there is no time or days or dates.

I slept until 3pm today.  It was my body’s way of catching up (I didn’t get much sleep during the five days of pain). Everything is “off”.

The mystery headache remains so.  I just hope it stays away.  I went to acupuncture again today to make sure it does and then came straight home.  Went out later again for food in hopes of snapping out of the funk.

Going outside on the street was WEIRD.  When I spend a lot of time in the house feeling ill it’s always hard to leave.  It also happens after every single hospitilization. It’s like, I am traumatized and want to be alone. Away from everything.  You get this scared deer-in-headlights strangeness about you and you find excuses to stay inside.  At least the weather is changing.  It will force me out in the next few days.

Wow. I forgot what this was like.

No headache.  It’s gone!  5 days of constant pain and I do not know how or why, but it is gone.  One thing I do know right now: That headache was a huge asshole.

I did not sleep last night.  I tried my luck at taking Excedrin tension headache (again). It didn’t work the last few days but last night I guess it did the trick.  The pain slowly subsided BUT there is a lot of caffeine in there.  I am not supposed to have any caffeine at all (because of my heart) so even a little bit affects me greatly.

The caffeine jitters combined with days and days of pain and general cabin fever had me questioning my sanity as I pace my apartment at 6 am…  Everything from the past week is a blur.  I kept asked myself and T if I was legit losing it.

I have more to write/ vent about (like how my doc FINALLY called me back today after three messages and an email) the headache but I can’t even find words right now.

All I want to do is to have one day where I am not uncomfortable. I would love to leave the house and interact with the world…

headache still here. it’s pure torture at this point.

when you are in this amount of pain for this long, a new “you” begins to emerge.  you say things in the least amount of words possible to get your point across, you feel like your face has a permanent scowl, and you can’t remember what it’s like to be without this block of concrete throbbing in your head.

all I can do is lie down.  it’s been one day short of a week.  this is so unfair.

managed to get myself to acupuncture this morning, and she brought me relief for about an hour.  then i went to my pain doctor and it got way worse while i was there.  everything else is a blur.  everything else was really hard (cabs, being outside, interacting with society).

when will this stop.  and why is it happening!  i am desperate.  i’ve tried everything.

Day 4 of the worst headache of my life.

The intensity from onset until now has been the same.

After four days of pain and discomfort, I feel absolutely insane.  Not only would I do anything to make this pain go away but I am also losing track of time, and can’t be bothered to speak, and I feel drunk —and not in a fun way. My brain is just foggy.

I have lost my appetite completely at this point.

Please please please let my headache go away

Called my doc before.  He has yet to return my call. I’m so glad I said it was urgent.

Also trying to get an emergency Sunday appt with my acupuncturist.  I think she may be able to help.

Most horrific hospital experience aside from the disgrace at Lenox Hill last year (that still takes the cake for THE most abusive terrible scary hospital stay).

How I’ve been treated:

-Came to ER at 10 pm.

-Was placed in a stretcher in the hallway.

-Sat there for two hours before anyone acknowledged me… I didn’t even have a wristband ( this is the first time I considered walking out).

-The excuse? The person who checked me in didn’t actually check me in. They wrote wrong name and birth date. WTF?

-I told them I was in agony with this headache. They left me sitting there for five hours until I was taken for a CAT scan.

-Their excuse? “Somehow” the order was misplaced so radiology never received it.

-CT scan negative (yay)

-I sit for another hour and a half and wait for my Spinal Tap.

-Finally it’s time.

-I quickly realize it is this doctor’s first time ever performing this skill and the doc directing her is beyond rude and in my opinion, dumb.

-After an hour of discomfort Nurse comes by with IV painkiller and benadryll to stop my itching from my first round of painkillers.

-Nurse gives Benadryll first and I have an instantaneous bad reaction. I start shaking uncontrollably, teeth are clenched with no control over my jaw.

-I am scared and ask the doc for something to help.

-This clown of a doctor gives me a speech about breaking the cycle of drugs and it’s “just the opiates making me react this way. It will pass.”

-It doesn’t pass quick enough. I can’t stop body from shaking, get cold, feel like I’m in Shock!

-I ask this clown of a doctor if anyone before me has reacted to Benadryll in such a way. He insists I did not take Benadryll.. That I actually took the painkiller. Ummmmm NO. That’s what I’m trying to tell you Doc! WTF

-His face changes and realizes this is a problem.

-I get fluids to flush out this bad reaction. -I wait forever for the spinal tap labs.

-After three more hours they are negative ( yay again) -In total 12 hours in an ER.

-Ignored for 11 of the hours and basically abused for the remaining 1 and the amount of time she was stabbing my lumbar to perform the spinal tap.

-I felt her try and go in at least five times. I was screaming. My right leg was zinging when she was in. My lower back is black and blue and I cannot walk. I have much bigger problems than I came in with.

-Messed up in the head from all the drugs and can’t even lie down comfortably.

-Oh, my headache is STILL HERE!