So What the Heck do I Have?

I wasn’t planning on going into detail explaining my condition, Hashimoto’s Ecephalopathy.  I figured you can all read about it on your own.  After all, most of my friends are scientists and engineers.

But a lot of you keep asking me specific questions.  And I forgot 2 things:

1. I have a background in neuroscience, so I just kinda “get” these things, based on my education and background.
2. Most of you do not have the time or desire to do your own research.

So now I have decided to explain.  ***WARNING:  Scientific/medical jargon contained within.***

Hashimoto’s Encephalopathy (HE) is a very rare syndrome associated with Hashimoto’s Thyroiditis.  So I’ll first explain Hashimoto’s Thyroiditis.  [This is the disease that was mentioned on Jeopardy lately.]

Hashimoto’s Thyroiditis is an autoimmune disease.  Certain antibodies attack and gradually destroy the thyroid gland, reducing its functionality.  This typically results in hypothyroidism, or an underactive thyroid.  About 1 in 1000 people have Hashimoto’s Thyroiditis.  Normally thyroid hormone replacement medicine will keep this disease under control.

Hashimoto’s Encephalopathy (what I’ve got) is a very rare neuroendocrine condition associated with Hashimoto’s Thyroiditis.  More generally, HE is known as Steroid-responsive encephalopathy associated with autoimmune thyroiditis (SREAT).  With HE/SREAT, certain antibodies attack neurons in the brain, much like those antibodies in Hashimoto’s Thyroiditis attack the thyroid.  At this point, there may be only several dozen diagnosed HE patients in the US.

It is unknown why the antibodies that would normally attack the thyroid (as in Hashimoto’s Thyroiditis) would attack the brain in Hashimoto’s Encephalopathy.  It is possible it is due to an autoimmune vasculitis (like an autoimmune condition leading to another autoimmune condition).  Those two autoimmune diseases occurring together is what would likely make the condition of HE so rare.

One thing to keep in mind is that not everyone with these elevated antibodies will exhibit Hashimoto’s Thyroiditis or Hashimoto’s Encephalopathy.  I have read that up to 20% of the population have elevated “Hashimoto’s antibodies” without having either disease.  On the other hand, it is unlikely, but not impossible to have normal thyroid levels, but exhibit HE.

To put it in simple terms, there is no “test” for HE, so here’s what it typically takes to be one of the unlucky few to get a diagnosis of HE:

1. High levels of TPO antibodies (the Hashimoto’s or autoimmune thyroiditis part)
2. Cognitive impairment symptoms (the encephalopathy part)
3. Responsiveness to steroids (the steroid responsiveness part)

The are two types of HE, distinguished by their symptoms.  Type II is believed to be more common than Type I.  I have Type I.

• Type I Common HE Symptoms (Stroke-like): 

[I underlined the symptoms I personally have exhibited.]

seizures, cognitive impairment, speech impairment, coordination problems, muscle twitching, tremors, confusion, muscle weakness, numbness, loss of vision, dizziness, balance problems, frequent headaches

• Type II Common HE Symptoms (Dementia):

dementia, psychosis, coma, cognitive impairment, altered consciousness, hallucinations, incontinence, muscle twitching, tremors, confusion

As you can tell from the symptoms, it would be easy to misdiagnose HE as another (or multiple) neurological disorder, especially as a stroke or dementia.  After all, I was originally misdiagnosed with migraines.

The terrifying part about misdiagnosis (and the resulting improper treatment) is that if not treated, this disease causes permanent brain damage, which results in irreversible dementia, coma and death.

HE is a relapsing condition.  It is a treatable, but not curable condition.  However, long-term prognosis is good with proper treatment.

Here’s the typical course of treatment for HE (normally in this order):

1. High Dose IV Steroid Treatment – high dose steroids (normally 1 gram per day for 3 days). 
   • I received this as my third treatment.  I took 500 mg methylprednisolone twice per day, each dose infused over 1 hour.  Results/responsiveness inconclusive at this point.
2. Oral steroids from 50-150 mg, tapering down in dosage over a period of many months.
   • This was my first treatment.  I was put on 30 mg Prednisone daily.  Some symptoms improved.  But we decided to try the IV steroids due to insufficient improvement.  I later found out that the doctor had originally prescribed 60 mg per day, and the pharmacy gave me the incorrect dosage.  Since 30 mg helped, it is possible 60 mg would have helped more.  I am now on 60 mg per day.
3. IVIG – Intravenous Immunoglobulin Treatment – blood treatment to replace antibodies with donated antibodies.  This is normally used by people who do not respond well to steroids.
   • This was my second treatment.  It was given over a period of 5 days.  My doctor considered it to be more conservative and safer than the high dose IV steroids.  However, it did not appear to help me at all.  It did not alleviate any symptoms.
4. Plasma Transfer – process to filter antibodies out of the blood.  Not a typical treatment for HE.  Also not proven to be generally successful.

Wow, I almost wrote a textbook here.  Most of this info is on the web.  Some of it is from personal experience and the experience of the people I speak to on the HELPS email support group for people with HE.

Hopefully this will help some of you understand a little better what I’m going through.  The bottom line is that I’m very sick and scared, most days are really hard for me.  However, you know I’m a fighter.  There’s no way I’m letting some stupid antibodies steal my brain.  It will take a while, and I will get better.  Heck, maybe I’ll even go into remission and stay there.

Again, it will take a while.  Most people do not begin to get back to some state of normal for several months.  It will be a bumpy road.  I’m up for it.

A Day in the Life of a Dizzy Person

It’s late, I know.  But I’m in steroid-induced sleeplessness, so why not blog?

My biggest complaint of this whole Hashimoto’s Encephalopathy thing has been the vertigo.  And that’s the one thing most people simply can’t wrap their head around.  So here’s my typical dizzy, nausea-filled day:

Wake up with a headache that feels like my head is going to explode.  No pounding, just an intense pressure.  Almost can feel the skull cracking.

Slowly get out of bed and watch the room spin as I stumble to the bathroom.  Kinda like just getting off one of those spinning carnival rides.  Collapse on the toilet and try to get my bearings while I do my business.

Grip the vanity for dear life, and turn on the faucet as I attempt to find my toothbrush and fit it in my mouth.  Stare at the drain during brushing.  Do not attempt to look in the mirror, for fear of losing balance and ending up with a toothbrush stuck in my throat.

Bend over a few times, grip the vanity and wonder if I should take the anti-nausea medicine now, or later when I am heaving, bent over a toilet.  Usually decide on later.  You can only take them every few hours, after all.  Might as well save it for when its worth it.

Shower?  Honestly, I just sometimes can’t do it without help.  When I do (which, don’t worry, is most often) it usually turns into a pseudo-bath.  I just can’t stand for that long.  But hey, at least I’m less worried about vomiting in the shower.  Easy clean-up.

Attempt to dress while gripping the closet door frame.  Imagine a little kid with little coordination, trying to put on pants.

Grab the stair railing before even looking down the stairs.  Hold on tight and watch feet.  Do not attempt to look all the way to the bottom.  And for goodness sake, take it really slowly.

Touch walls, counters, furniture, pets and anything else on the way to keep steady.  Sometime just touching something helps, even if I’m not leaning on it.

Choke down a multitude of pills.  Make sure they’re all timed correctly, though.  Choke down some food.  Try not to gag.

Find a quite place to sit and work.  Must be close to a toilet and couch or bed.  Choose steps wisely.  It seems like I am only allowed 10-20 steps per hour.  Overdo it and I end up in fetal position trying not to vomit.  That’s why I need the proximity to a couch or bed.  Kitchen floor does nicely sometimes, I think the cold tile helps.

And choose words wisely (not like I’m good at holding my tongue).  It seems like I have a similar limit on words.  Too much talking and the guts don’t like it – fetal position or bent over a toilet.

The hard parts of my day have really boiled down to deciding to go outside.  Do I go to get the mail?  I don’t know, it’s kinda windy, things are moving around.  The dizziness is so much worse when some things are actually moving and some are only moving in my mind.  I can only imagine it is similar to a drug trip.

Ok, wind died down.  Hopefully the key doesn’t stick in the mailbox.  Take a few steps.  Watch feet, keep steady.  Ok, key in door.  Good.  Grab mail.  Crap, key stuck.  Feeling sick.  Wrench key out of door.  Watch feet, walk to apartment.  Oh crap, not going to make it…  Made it in.  Collapse on floor.  Don’t puke, don’t puke, don’t puke…

Heart rate steadying.  Calming down.  Take a pill.  Good thing I waited.

Just try to stay still.  Sit in one place.  Deep breaths.  Don’t get stressed.  Even a little increase in heart rate sends me into lightheadedness and fetal position trying not to vomit.

Finish working on the laptop.  Boyfriend comes home.  Am I well enough to stand and cook dinner?  Maybe, I’ll give it a shot.  Otherwise, there’s always take-out.

Go through my whole toothbrushing and undressing routine again.  Climb into bed.  Woah, feels like I’m falling underwater.  Get acclimated to laying down.  Of course not completely, my bed is propped at about a 25 degree angle to help with the steroid-induced acid reflux.

Heart rate slowing.  Deep breaths.  Exhausted, but sleep evades me.  Those tricky steroids are always luring away my sleep.  Come back sleep.  I miss you.

V-tach is not fun

I’m back home, peeps, but not out of the woods.

I went into the hospital Wednesday night.  I had been told to stop taking the blood pressure medicine that day.  I also received my first 500mg dose of IV steroids that Wednesday night.

Thursday, I woke up feeling better than I had in weeks.  For the first time in months I could do the tandem (drunk walk) test.  Considering how bad I had been feeling for the past several weeks, this was a vast improvement.  Weird how before I got sick, I never thought being able to walk in a straight line would qualify as a “good day”.

Unfortunately, Thursday night I took a turn for the scary after my 3rd dose of the IV steroids.  I was laying down for bed.  I was used to muscle spasms (part of the symptoms) and I was feeling a really tight spasm in my chest.  I thought nothing of it, just thought it was a particularly strong muscle spasm.

The nurse came running in, “What’s wrong, are you ok?”

“Uh yeah, ” I said, not having any idea why she was running in my room like that.

Well, I was hooked up to a heart monitor and she was notified my heart was going crazy.

“Oh, that’s my heart?” I replied.  “I just thought it was a muscle spasm.”

She looked at me like I was crazy.  Then reprimanded me for not telling her what happened.  “You need to push the call button when stuff like this happens.”

Well apparently my heart was going into ventricular tachycardia, or v-tach.  Am I really the crazy one since I didn’t know my heart was freaking out?  How was I supposed to know, anyway?

So I got a few winks of sleep that Thursday night.  I woke up Friday feeling like total garbage, really awful.  Naturally, like most people, I get up to go to the bathroom.  My heart goes insane and I almost pass out.

This time, I know there’s a problem.  I sit back on the bed, and in comes the nurse.  “Your heart rate jumped to 145 bpm!  What were you doing?”

“Almost passing out while trying to pee.”  I replied.  “I really don’t feel so well.”

So there was all kinds of commotion.  EKG/ECG, blood tests, etc.  Then I was confined to bed, not to get up without assistance (even to pee).  And the most exciting part was having to get painful, burning heparin shots in the belly to avoid blood clots due to immobility.  I really feel like an old person now.

All the while I had been complaining of dehydration.  No one would listen to me.  “Just drink more water,” they’d say.  Well, I’ve been drinking enough water to drown a whale, and my mouth still feels dry as a desert.

I begged for IV fluids, what could that hurt, after all?  “No, steroids cause bloating, not dehydration,” they’d say.  But seriously, I’m drying out!

Finally they agreed to give my IV fluids.  Within hours, my heart started returning to a normal beat, and I didn’t feel like I was going to pass out all the time.  Still got dry mouth, though.

So now I’m home, on 60mg prednisone per day.  I feel like I’ve been run over by a car.  I’m still so freaking dehydrated (no matter how much I drink).  Heartbeat still kinda weird.   I feel generally like total crap.  But the good news is that it is a different type of crappy feeling.  Some of the HE symptoms are gone, some aren’t.  So I’m hoping my current crappy feeling is steroid side effects that will subside.

On a really weird note, my senses are all effed up.  I first noticed my hearing is messed up, like I’m underwater.  Then food started tasting differently.  I had ketchup on fries and it tasted as sweet as candy… gross.  Then I came home and will swear my house smells like a hamster cage (I don’t have hamsters).  This is weird, and I don’t like it.

I Shaved My Body

I’m ready this time.  I Naired.  I’m hairless.  You nurses won’t get some sick pleasure from ripping that medical tape off of me this time.  Bring it on!

I’m headed to the hospital in a few minutes.

I’m going to be receiving high pulse IV steroid therapy.  It should make me feel a lot better. (my doctor called me back today, btw)

Don’t worry, all.  I don’t need anything.  I’ll be out in a few days and hopefully at my work holiday party on Saturday.

And maybe getting a puppy this weekend, too  (Against my sister’s advice).

I’m really hopeful about this one.  I wanted this treatment from day 1.

I’ll keep you posted.  But probably not until after I get back from the hospital.

Wish me luck!

Want to Join My Club?

I am thinking of starting a club called “young people with crazy illnesses who are otherwise healthy”.  My friend (and member) said it would be hard to have meetings because everyone would be at doctor’s appointments.

Let me tell you, I haven’t been doing so well lately.  My headaches and general pain are back and I haven’t slept in 4 days.  And I don’t mean I kinda haven’t slept.  I mean, lying in bed, in pain, completely unable to sleep… for 4 days.

That sucks the big one.

It’s funny that people really don’t want to hear that I’m not doing well.  My grandmother asked how I was doing.  I told her, “Not very good.”

So she says, “But better than before?”

And I said, “No, not really.”

So she says (with more inflection), “But a little better?”

So I lied, “Sure, I guess a little better.”

What’s up with that?  I should be the one out of touch with reality, after all, I’m the one with brain attacks. 

Why do others get to tell me “It will all be ok”?  You know what?  You aren’t qualified to tell me it will all be ok!  Maybe it won’t be ok!

Woah, calm down Allison…  Ok.  Back to venting.

Last night was bad, quite a bit of crying.  I was lucky enough to find an email support group for people with HE.  But reading what these people have been going through, and going through for so long was pretty depressing.

A lot of the older people can no longer take care of themselves, they just have deteriorated under this illness for so long.  I was pretty depressed to read a successful software engineer had to quit his job and become a dog walker due to “diminished mental capacity”.

I don’t want diminished mental capacity.  And I don’t want to become a dog walker.  Actually, at this point I am too dizzy to even walk my own dog.  So I couldn’t even be a dog walker if I had to quit my job today!

This is all depressing.

And I think I am having a bad reaction to one of the medicines.  I’m on blood pressure medicine, which was supposed to help with the migraines.  Well, I don’t have migraines or high blood pressure, so why am I still on it?  Especially since it might be causing some crazy side effects.

Well that is exactly the message I left my doctor yesterday morning.  And I called again yesterday, spoke with the nurse, and said I’m really not feeling well and need a call back today.  And I reiterated the same to the receptionist today, since the doctor won’t call me back!  I’m tempted to just risk it and stop taking the medicine and see what happens.

Well that’s enough blogging for now.  I’m getting aggressive.  I need to calm down.  Maybe I’ll go watch Dr. Phil or the Tyra Show.

Needle Tracks

Boy, have I had a crazy month!

Last I blogged, my diagnosis for all these crazy symptoms I’ve been having was migraines.  Well, I have a new (hopefully more correct) diagnosis, Hashimoto’s Encephalopathy.

It is a VERY rare neuroendocrine disorder (only dozens of cases in the US).  It is caused by an underactive thyroid, then antibodies attack neurons in the brain. 

It causes the crazy symptoms I have been getting like concentration problems, disorientation, numbness on the right side of my body, muscle twitching, and intense headaches.

The symptoms were getting so bad, I felt like I was going to die.  My head felt like it was going to explode.  No matter how much morphine they gave me in the ER, it still didn’t help.  It sucked, hardcore.

The normal treatment for H.E. is steroids, but my doctor was hesitant to put me on steroids because of the side effects.  So, my doctor admitted me to the hospital to start a blood treatment called intravenous immunoglobulin infusion (IVIG).

I won’t go into the details (you can read about that yourself) but the IVIG was supposed to reduce the amount of antibodies attacking my brain, thereby making me feel better.

I had to spend 6 days in the hospital, hooked up to machines.  Apparently, I’m a “hard stick” so I still have bruises and needle marks from the 10 times I had to be poked.  Oh man, it was painful.

Once they finally got an IV in my forearm, it infiltrated after a couple of days.  This means the medicine inadvertently got out of the vein and into the surrounding tissue in my arm.  Let me tell you, it burned like nothing else.  My arm swelled up and turned red, and the pain was severe.

After that, they decided to insert a PICC line.  I was pretty nervous when they told me they would be inserting a small tube into my arm, feeding it through my vein and into my heart.  But they said it would be more comfortable than the other IV, so I was up for it.

The two specially trained nurses suited up for surgery, covered my arm with those towels with the hole in them, then cleaned the site with iodine.  I had to turn my head away for sterile reasons, so I wasn’t able to watch. 

 They numbed my arm with lidocaine (that was the most painful part).   Then they used an ultrasound to guide the tube into my arm and through my veins.  I was nervous I would feel the tube snaking through my veins, but I couldn’t feel anything.  After they were done, I had to get an x-ray to make sure everything was in the right place.

After all was complete, I had a dressing taped to my arm with two little ports hanging out.  I felt very bionic.

Unfortunately, the IVIG treatment didn’t work.  I was discharged from the hospital feeling just as bad as the day I was admitted.  This finally prompted my doctor to begin steroid treatment.

Within days of starting the steroids, I began to feel better.  The numbness disappeared, the twitching significantly reduced, and the headaches are much less severe and less frequent.  However, the dizziness just won’t go away.  I can’t drive and I can barely walk for more than a few minutes.  Any time I move around or things move around me, it feels like I’m spinning.  So this causes bad nausea.

From what I have read about H.E., it takes a while to figure out how much steroids will work for each person.  Hopefully my doctors and I figure it out sooner than later.  I would really like to drive again!  I would really like to return to work on a normal schedule, too.

In the mean time, I’m doing my best to cope.  I was pretty depressed for a little while.  I have never been this dependent on others before.  Being wildly independent from the time I was very little, I never imagined I would not be able to work 40 hours a week or drive myself to the grocery store.

However, I know this is a treatable condition so I need to keep up hope and faith that I will get better soon.

The IRS are Criminals

I just got a letter from the IRS stating I made a mistake on my 2007 return.  They are billing me for the amount of the mistake plus interest from 4/15/08 – 11/12/09. 

Yes, they are charging me interest for the past year (plus a month in the future) for a mistake they just informed me about.

After looking over the paperwork, I agree that I made the mistake.  My employer never sent me my W-2, and it is ultimately my responsibility to make sure I report all my income. 

So I will begrudgingly pay the $542.00.  However, I think it is totally unfair to charge me interest when no one found the mistake until now.  Especially to charge me interest for a month in the future!

A bunch of criminals they are!

San Diego

Day 1

Our first day in San Diego consisted primarily of picking up a rental car and finding our hotel.

On the way to the hotel, I was admiring the green California scenery. With the exception of all the mountains and hills, the landscape reminded me of Florida. Green and lush beats the brown and sparse landscape in Tucson.

Another thing that reminded me of Florida was the stores. Shopping anyone? I was super excited to see some of my favorite stores and restaurants. Oh, I could totally move here.

We went to a seafood restaurant near our hotel. It was horrible. The seafood was underseasoned and overcooked, and my cocktail tasted like a blend of rubbing alcohol and cough syrup.

Day 2

This was the day I was waiting for… SeaWorld!!

We got there nice and early to beat the heat and the lines. We got the opportunity to see a bunch of the smaller exhibits and save time for the shows later in the afternoon.

One of my favorite things there was the motion simulator ride. The theme was an arctic exploration, so everyone climbs into a “helicopter” and sees the sights through the “windshield”.

I’ve been on many motion simulator rides before, but this one shook more than I could have expected. It was so much fun! This thing was really shaking everyone up. People were screaming, I was cracking up. It was a lot of fun.

We went to the Pets show, where all kinds of pets perform tricks. It was cute. I had no idea you could even train cats to do tricks like that.

Of course, the Shamu show was a highlight. It was really spectacular. I guess it has to be in order to pack so many people into a stadium, baking in the sun. I got a sunburn on one arm. It was worth it.

Here’s a video I made from clips at SeaWorld.  There are captions and stuff for the benefit of the kids in my life.

We spent most of the day at SeaWorld, then went back near the hotel for dinner.

We went to Bennigans (I used to love that place when I was a kid). I thought I was ordering a ham and cheese grilled sandwich. I was only half right.

What I actually ordered was a Monte Cristo, the epitome of fat people food. It was a ham and cheese sandwich, battered and deep fried, dusted with powdered sugar, with a raspberry dipping sauce. And yes, it was as overwhelming and hard to eat as you can imagine. I think I took two or three bites, then called it done.

Day 3

Today was the perfect day to go to Balboa Park. The weather was incredible and we were in the mood for a relaxing day to see some culture and admire the architecture.

First thing we did was buy a pass to visit several museums and the IMAX theater. The first museum we went to was the Natural History Museum.

The museum was hosting the Body Worlds exhibit. I love these exhibits. I have been before in Ft. Lauderdale, but it was worth it to go again.

The exhibit displays human bodies in various stages of dissection. What is especially amazing is the bodies illustrating just the blood vessels. I can’t even begin to imagine how the scientists were able to extract only blood vessels from a body, keeping it all in its intact form. It’s truly incredible.

One of my other favorite parts is the pregnant woman. How often does one get to see a cross section of a pregnant human? The exhibit is awe inspiring, informative and entertaining. Really a must-see.

Next we went to the Museum of Man, an anthropological museum. It was very interesting to see the anthropological roots of different cultures. Especially interesting to me was the mummy section. Of course, there were Egyptian mummies. There were also mummies from other parts of the world, like bog mummies from Scotland and shrunken heads from tribes around the world.

After that, we had a coffee at an upscale joint at the Art Museum. I can’t remember what it was called, but it was a very cute place with tables amidst modern sculptures.

Then we went to the Reuben H. Fleet Science Center. This place is awesome for kids, but still entertaining for adults. There are a lot of hands-on gadgets to play with.

The Science Center also houses the IMAX theater. We saw an underwater movie which was so cool. It really felt like we were underwater peeking inside the world of these fish.

The movie was a great way to end a relaxing day. We had dinner, then got ready for some nightlife.

We went downtown looking for some hot nightclubs. We decided to go to a place called Envy. A friend and local told me this nightclub was good. Well, I won’t trust him again!

My boyfriend and I are used to clubs with a more latin flavor (where people can actually dance). I am from South Florida, after all… Anyway, this place couldn’t have been more different from any club I have ever visited.

The music was terrible. I used to be a dancer, and even I was having a hard time dancing to this music. For example, they even played Respect by Aretha Franklin. Seriously? Is this karaoke or a dance club?

Speaking of karaoke… The whole club was singing along to all of the songs. Who does that? Maybe if they stopped singing and focused on dancing, it wouldn’t have been so awkward.

And if terrible music and singing wasn’t enough, the DJ kept spraying foam and blowing dry ice fog on the dance floor.  It was really annoying.

We did manage to have fun because we kept laughing at how bad the club was.  Another source of entertainment was a group of cougars slutting it up on the dance floor.  Ladies, have you ever heard the term “age appropriate”?

Day 4

Today was devoted to spending time with my boyfriend’s family.  Luckily his family was great.  We spent a lot of time laughing.

We went to church, then went to the casino, Barona for a fantastic lunch buffet.  The food was really good, so I stuffed my face.  Good thing I was wearing a dress instead of pants, so I had a little more room for my stuffed belly.

We hung out a bit more, then went out for ice cream.

Day 5

Our very short last day was spent getting breakfast at  Denny’s and packing.  We went to the airport and headed back to Tucson.

All in all, the trip was great.  I will definitely go back to San Diego.

A Few Days in Florida

I hadn’t been back to Florida in about nine months, so I was very excited to see my family and my old stomping grounds.

I was only in Florida for a few days for my sister’s birthday.  I wasn’t able to do much, but I managed to cram in some time for family and friends.

I did a ton of shopping, going out for some night life, and doing some touristy stuff.  For example, I went to my favorite nature preserve, Gumbo Limbo.  They have all kinds of native sea animals, including sea turtles.  The university does all kinds of studies on sea turtle babies.  Here’s a photo inside the facility.

There were little turtles attached to strings, swimming around in these containers.

Gumbo Limbo also houses these large starfish (although they look pretty small in the photo).

That’s pretty much it for my trip to FL.  It was good to go back.  I look forward to going back for Christmas.

At Least It’s Not a Brain Tumor

I know I keep promising to post my trips to Florida and San Diego.  And every day, I have the intention to do that.  I just have to type it up and upload some photos…

However, I seem to be spending all my time lately in the hospital or in bed.  These “recurrent complex migraines” are getting worse.

Now, in addition to the numbness, headaches and nausea, I am unable to walk due to dizziness. I fall down almost every time I get up.  I sucks like you can’t even imagine.  I feel like I’m going to vomit every moment.

I finally got the MRI and CT scans done, and it showed nothing abnormal.
That’s good in one way, but the bad thing is that I think the doctors are not taking me seriously because they can’t “prove” that I’m sick.

They ask me these leading questions, insinuating that I am exaggerating my symptoms.

These people have no idea how much pain and discomfort I can actually take.  I am into rather extreme sports after all… Prior to this, you could often find me sparring with a worthy opponent or climbing a mountain somewhere…  You think I would let some mild headache slow me down?

If these doctors knew me at all, they’d know they have to take this seriously.  Hopefully I will have more luck with the neurologist that I get to see in a week.  Can you believe one has to wait 3-4 weeks to see a neurologist in this town?

To make matters worse, I obviously have not been able to work.  I’m not really sure what I’m supposed to do.  I guess I’ll call HR.  This is so crappy.  I’ll let you know what happens.