Week of Christmas...

I haven't written too much lately, because I honestly didn't know how to write about the amazingness that was going on.
The week before/of Christmas I felt better than I had in a YEAR.
I didn't even know what to do with that. I know that sounds weird, because that's all I've wanted for years.
I wouldn't call these days completely "pain free," by any means...but I was able to be awake and up and about for several hours at a time, get things done around the house, and celebrate the week before  Christmas like a champ!!

We went to Christmas town in Busch gardens with the boys, kept Jax overnight again (!!!) and took him to see the lights at Bull Run park, made cookies, decorated the house, went shopping, wrapped gifts, delivered donations to the humane society and hosted an ugly sweater party! Oh!! And kept Aron and Jason and chased the firetruck with Santa on top, and went to the Christmas party at the firehouse, which I haven't been able to go to in years!!

Christmas Eve, back to normal. Vomiting, high heart rate, dizziness, and severe headache. And every day since then. Ugh.

I'm back on zanaflex every night in addition to my regular meds and have an appointment with Dr. Brown on 1/2.

Just a quick update.

Want to talk about FML? Really?

I haven't been able to keep anything down in about 48 hours. Not even my go-to, grape Propel.

When I can't keep my meds down, there is always the option of phenergan suppositories...sorry if that's TMI, but its life. At this point those aren't even an option, so its call the neuros and hi-ho, hi-ho off to the ER we go.

FML. I really hate that acronym. The next time I see some stupid person is all "Oh FML nursing school finals week," or "FML we're out of wine." or some kind of nonsense I might loose my shit. I'll tell you FML.

I can't finish nursing school, or get back to work, or drive my car or even get in the shower some days. I'll tell you about FML.

And on the same note...I have no reason at all to say FML.
I have a family that loves me.
I have an amazing boyfriend that loves me and takes care of me, even though I'm sometimes (OK...most of the time!) much less than desirable. He deserves the very best, and I'm so lucky just to be able to spend time with him, let alone be able to call him my boyfriend and share this amazing home with him
I have a beautiful, 3 bedroom home, with a big backyard for my doggie to romp and play in
I have my dog...who is just the greatest. I mean really you guys. He is crazy and funny and cute!
I have awesome, caring friends.
I live in a country where I'm free to say and do things like divorce and 2nd chances
I have an illness, and it sucks...big time and I might be in a lot of pain but in ALL seriousness, in the GRAND scheme of life. I have horrible headaches. I don't have a tiny baby in my arms who is dying of cancer. I'm not missing a limb. I'm not blind or deaf...I can see and hear my beautiful nephews!
One day they ARE GOING TO FIX ME you guys!!!!

So no...DON'T FML!!!! And stop saying that, you morons!!

I'm going to use this...

I never park here, but I'm going to play my "hybrid card," for once...
Screw all of you with your normal gas powered cars.

Two good days...

I had two good days in a row. This has not happened since September.
I manged to get a lot of my office cleared out, a lot of the spare bedroom (aka Jax's room) and we got a little Christmas decorating done.
I was fortunate enough to have Christopher home with me during this time. It was nice to spend time with him that wasn't sitting in an Emergency Room for once.

This morning at 4am, the beast is back, but I'm trying to push through. Ugh.

Panic and fear

I've always had an issue with anxiety.
I feel like I have a million things to do,
and my heart feels like its beating out of my chest,
my thoughts race,
I can't get to sleep because I can't stop thinking of all the things I need to do,
I over think everything,
every detail,
of every situation,
ever.

I can usually talk myself down though...make a list...check it twice...chill out. No problem.

Not anymore. With this migraine has come something I have never known before.

Panic attacks.
Oh good Lord. I thought I was dying of a massive heart attack the first time. And I should have known better. I'm a medic. I worked in a cardiac stress lab for five years. I SHOULD have known.

They keep getting worse. At UVA they were completely out of control. I would work myself into vomiting and hyperventilating. Nice, huh?

I feel like such a dumb ass when they are over.

We went to Christmas Town at Busch Gardens last night with Komar, Gioia, Aron and Jason. We were waiting in line for Santa's feast/buffet dinner and story time. It started to get very crowded, and loud. People were letting their children run all over the place and crash into things, including me...and I was hurting. My head was pounding so bad but I was determined to make it through this night. I could feel myself starting to shake and tears filling my eyes.

My absolute worst fear right now, would be to panic or break down in front of the boys.

Clean House

I would love a clean house for Christmas. My house currently is nothing short of disgusting. I have not been able to get out of bed for more than a few hours, if that, in weeks.

The dirty dishes are piled up, the kitchen table has papers everywhere, both guest rooms are a disaster, the bathroom well, I can't even talk about the bathroom!...I don't even know where to start and to be honest...I wouldn't get very far.

Every time I try and do a little something I either get really sick and end up vomiting or something stupid or I start freaking out because there is just so much to do and I can't do it and I have a panic attack. I hate living this way.

I would really love to decorate for Christmas. Christmas is my jam. But I can't possibly get started on that until some of this crap is cleaned up. You can't decorate a big pile of crap. That's just fact.

So I don't know if its wrong to ask for something like this for Christmas, but I would really like a cleaning lady, or cleaning service, or maid or whatever is the PC term. I'd like someone to come and clean my house really well. Especially the bathroom and kitchen. Ugh.

(Everyone keeps asking how I'm feeling. Im in some pain today, about 7/10. Average for me. Was in the ER yesterday because I was in a lot of pain and was calling UVA all morning with no answer. Couldn't keep anything down. Tried phenergan, benedryl and naproxen with no luck. Couldn't even rest. The doctor there originally wanted to do a spinal tap but changed his mind. He was very rude and condescending to me, made me more upset and crying only makes the headache worse. I've never been spoken to like that by a doctor, or anyone really. I felt like he was accusing me of using drugs, etc. every time we go to that hospital, I say never again...and there I was back again. I never learn. I was there for 8 hours and was in worse pain than when I arrived. I don't know how many more days like this I can handle, especially knowing that I have nowhere to go for help on days when it's really bad.)

oh no, oh snow!

 December 9, 2013
Apparently when the barometer drops...no mater if its for rain, snow, or ice...its a headache trigger for me.
I woke up at 3am with worsening pain on the right side and a pounding below my right eye...which is different than my normal. I usually have pain BEHIND the eye.
The ice had coated all of the trees next to and around our house (see pic above) and the branches were all so heavy at this point that they had started to fall, and sheets of ice had begun to slide off of the roof as well. It sounded like bodies were either falling and hitting my roof, or creatures of the night were clawing their way in. Ugh.

I tried a new medication that I was given last week, Visteril. It didn't make me sleepy, as I had hoped for...but it has seemed to help with the pain and nausea. THANK JEEBUS. The last place in the world that I wanted to be on a day like today is the ER!!!

I finally fell asleep around 4am and slept until noon and have been awake since then. Its now almost 6pm. May not sound like much to you, but that's a huge accomplishment to me! I have also been up cleaning my office all day, and have managed to do a few things like contact the douche bags at unemployment, fill out MORE forms for UVA, and submit an Initials Inc order!
That's more than Ive done in several weeks, people!
I could get used to this!!

You're a what?

Ok lady...I'm going to put this nicely. But seriously.
YOU are the headache clinic nurse?

Do you have idea what a headache is? Because by the amount of stinky perfume you are wearing, I'm guessing that you don't know that smells can make me want to stab you.

Oh...and the fact that you talk louder than a dying elephant? I'm about to start banging my head on the table and tell the doctor it's your fault.

Those huge silver bangle bracelets that you are wearing than bang on the table EVERY single time you lift your hands up to enter something into the computer. I have some Chapstick in my purse that I'm pretty sure I can gnaw into a shank and kill you with

You went out and came back with a BP machine, slamming the door going out and coming in. Thanks for that. Exactly what I needed. Oh, and then you let the damn thing sit there and beep at me for 10 minutes while you jabbered on about your kids or some crap I don't care about.

While it was nice of you to offer me A glass of water because "I don't look like I feel very good," in the future...please please please...think about that you are doing to your headache patients.
And don't slam the.....ugh. Door.

UVA trip

December 2 2013

I had such high hopes for UVA.

Maybe that's why I was so miserable. Maybe next time I should go there, thinking that everything will turn out terribly, and perhaps something might work?

I had been miserably sick (more so than usual) for about 3 days. Unable to keep any food down, I had lost 10 pounds in 2 weeks, and the headache was much more intense for some reason. I kept calling the neuro clinic and the on-call doctor would call back, telling me to go to the ER if it was "that bad."
I get SO tired of hearing that! It's ALWAYS "that bad." If I went every time, I'd just be camped out in the ER parking lot.

Finally, finally, finally I got a nurse on the line who said that she would get Dr. Brown (the physician who knows me best, she is my "assigned" resident in the clinic, and has seen me twice in person...that's kind of the best you get there since new residents come and go as they graduate) and she encouraged me to come to the UVA ER. I told her that there was no way I could come down there, a 2 hour drive...just to have them send me home and do nothing. She said that there were 2 IV medications that they could try, but they would admit me for them. She also said they would "make sure I was comfortable," before we did anything.

I was sold...comfortable is something that I haven't experienced in months!

Apparently UVA and I have different ideas of the word "comfortable."
To them..."comfortable," means
-a bed in the hallway right next to the EMS door, where all the medic units come in and out, shouting at each other as the come.
-No pain medication, ever. I had not one milligram of pain meds...its not in the neuro "protocol for headaches," even if one is screaming and writhing in pain and/or having a panic attack.
-12 sticks to get an IV. I know I'm not easy, but comeon guys. Everywhere else I've been can get it in 2-3 maybe
-parading 5-6 doctors in to look at you, poke at you, and talk loudly about you every 20 minutes (I know, its a teaching hospital, I'll let this one slide)
-putting a migraine patient in a room with a room mate, a very loud one who hacks, coughs, spits, chokes and poops the bed...oh, and makes very loud 3 am phone calls
-putting a migraine patient in a room with broken window blinds so the sun shines in at all hours
-putting a migraine patient in a room right next to the HELIPAD

Long story short, the meds did not break the headache and they stopped them after the 3rd dose. I was willing to keep trying until the 6 that were planned but I'm an idiot and told them that I had dreams about spiders and my dead grandma. I did. It was kinda cool. And honestly...weird dreams meant I was sleeping, which I don't do very often.

After they stopped the Thorazine, they said I could stay until Monday morning and they would have the pain management doctors come see me, but that they would not be doing any more treatment. I really wanted to go home because I was having so much pain that they weren't doing anything about, and they weren't giving me my meds on time, or correctly and I was just sitting there, with a lady who was shitting the bed, in pain.
 But Chris said we should stay to see what pain management had to say since we were already there. And he was right...so we stayed

Sunday I had at least 2 massive panic attacks. At one point I guess I said something stupid. I think it was along the lines of "I cant take this anymore," and next thing I know...psych is sitting they're trying to figure out if I'm going to kill myself or not! Ugh.
I also passed out in the room and fell, injuring my right knee and left shoulder. even then...noting for pain, not even a Tylenol. I was ready to rip out the IV and leave.

Monday morning. Neuro"team" shows up and says...oh by the way, pain management isn't coming, we knew that last night and forgot to tell you. I have never been more angry in my LIFE. I sat there, all night, in pain, having panic attacks, fell, everything...for absolutely nothing. I told them to get the fuck out of my room. Yes. I said fuck to doctors.

Chris told me to get dressed and he found a wheel chair and away we went. We didn't get discharge papers or anything. Just up and out. By the time we found our car I was so shaky I couldn't stand and I was dry heaving. I knew we wouldn't make it home. Thanks Effing neuro team!!!

We had to go back into the ER there at UVA and I tried to check in but I couldn't, because it was showing that I was STILL up in a bed up on the floor. GRRUMPH!! Foiled again, Batman!

He had to wheel me back up there and the attending Neruo jackass tried to be all nice and sweet to me because we were to angry, he could probably see the steam coming our of our ears. As soon as we had the discharge papers in our hands we went back to the ER.

ER had to give me 2 liters of fluid, IV nausea meds (the floor nurses couldn't give me ANY IV meds because the Neuros wouldn't order it!!) IV Valium, and some pain meds to swallow because I was dehydrated and just shaking with pain. FROM BEING IN THE HOSPITAL?????

When I think about this whole situation I get so angry, Ive been in the hospital before, I've worked in hospitals before, Ive taken care of family and friends who have been in the hospital before...this is NOT the way it should be. You should not have to go to the ER to get help from your trip to the hospital!!

Any thoughts? Advice?

Posts out of order.

Just FYI some of these posts are out of order. I wrote a bunch while I was in the hospital, or just after I was discharged.

I had the idea to start blogging about my headaches while I was at UVA, but I wasn't really sure of how to pull it off.
I have been blogging for YEARS about crafts, and my nephews, and cooking, and my dog! And I'd like to think I was pretty good at it! (I've been featured on some pretty popular crafty blogs for a few of my projects!) I LOVE BlogAboutMyDog.blogspot.com!!!!
But this is a whole new ball game. I can't just change the subject and start spray painting something or post a cute picture of Oscar here to change the subject...

Or can I?

So...To all of my aunts, uncles, cousins, friend, family, friends of friends, and maybe just some people who stumbled upon this blog by accident...bare with me. I might take some time before we are blogging in "real time," I probably wont have very many pictures up like I do on BlogAboutMyDog, I don't want you to feel sorry for me or think of me any differently, I don't want any attention, I'm just updating. If you don't care, don't read. If you do care...then read. If you have questions, then ask...don't assume. We all know what happens when you do that.

Who? What? Where? When? Why? of this blog

November 30, 2013:

Who?
My name is Emily. I'm 29 years old and I was born and raised in Virginia by the most amazing parents in the world.
Professionally I'm a medic, I take care of people...at least I'm supposed to.
I'm a lover, not a fighter as they say. I have awesome parents and sisters. I have this crazy, silly, amazing boyfriend and we have a neurotic, yet loveable dachshund. He has his own blog if you want to read about him.

What?
To date, I've had a migraine headache for 61 days. Sometimes...like today, it's tolerable. I can sit here on my ipad and write and read. Others, I can't even open my eyes for fear I'll start vomiting.
I've had migraines since I was about 4 years old.
The first time I remember getting one, I was sitting at the dinner table at my grandparents house on Christmas. I couldn't finish my dinner because I felt like something was wrong in my head. Being 4, I couldn't express my feelings, so I sat under the table on the floor for a bit...when that didn't work, I went into a spare bedroom and stretched out on a bay window seat and fell asleep. When I woke up, it was dark, and I felt better. It was 1988 and everyone smoked in the house. I believe cigarette smoke  was and still is a migraine trigger for me.

Where?
We live in northern Virginia. So mostly I guess I will be talking about things here, although my neurologist is at the University of Virginia, which is in Charlottesville. I was just hospitalized there for a trial of IV Thorazine, that failed.

When?
At least once a month, every month, since 1988.
At this point, as I mentioned before...every day for the past 60 days and nearly 3x/week for 3 years.

Why?
Why am I blogging about this? Because I have to. People have no idea what life is like for someone with chronic migraines. I am so sick of people referring to it as "just a headache." If it were just a headache, I'd still have my job, I'd still be driving, I'd be able to get up and do the things I love. I wouldn't vomit almost everything I eat, and I wouldn't go through awful, painful treatments just for funsies.
Also...I had been posting "how I was doing," posts on Facebook for the few friends and family who actually cared enough to ask...and I know that for those who DON'T care about it...it's annoying to have someone filling your feed with obnoxious posts about their depressing crap.
So...if you've made it to this blog, you must care, and I appreciate it.


This is not going to be a happy, or funny, or cute blog. I'm going to lay that out for you right now. This is real. This is no bull shit. But this is my life.