Literally.

Considering I am immunocompromised, it is a lot easier for me to get sick.

I have been feeling sick for the last few days, hoping I didn’t catch a cold.  But it looks like I have caught a cold.  I feel like crap.  I’m taking Zicam in the hopes that it will do as promised and reduce the severity and duration of my cold.

This is supposed to be my vacation.  And because inconsiderate people choose to infect anyone and everyone with their filthy germs, I have to miss out on a nice time.

Anyway, you know what else makes me sick.  The car rental industry’s misunderstanding of what makes a reservation and the inconsiderate people who don’t return their cars on time (thereby making someone else lose their reservation).  Those people who don’t return rental cars on time are probably the same people who go out spreading their sick germs.

I’m rambling because I had made a car rental reservation long ago.  You know, so I can actually get a car (for my boyfriend to drive) while we’re in Florida on vacation.  I called the rental place this morning to be sure my car had arrived.  He said he didn’t have the one I rented, but he could give me a different car.

We arrived and there were no cars in the lot.  WTF?  We go inside and the guy said only one person returned their car and they managed to lock the keys in it and he couldn’t open the car.  That sounded fishy that he wouldn’t have another key, but I gave him the benefit of the doubt.

My brother asks about the cargo van sitting in the lot and he tells the guy I’ll take it.  We were both shocked.  The guy says I can take it if I want.  Of course I don’t want a cargo van. But he said as soon as he gets another car returned I can swap it out.

So I reluctantly take the van.  And there was issues with the out of state license and credit card and my bf driving, so I ended up having to drive.  Good news, I did drive a couple of miles to my mom’s house successfully.  Yay!  It was a straight line down the road, but I haven’t driven in a long time.  Baby steps.

So I called the rental place for the next several hours waiting to hear if anyone returned their cars.  No one would answer the phone.  I’m guessing the guy ran out of cars and stopped answering the phone because everyone was pissed.  I don’t really blame him, but that means I am stuck with a cargo van until Monday at the earliest.  Grrr.  I guess at least I have a vehicle.

I don’t like being sick!  And I don’t like driving cargo vans!

First of all, Merry Christmas!  Happy Chanukah and Kwanza and Festivus and whatever else you choose to celebrate this time of year.

Facebook scared the crap out of me.  My friend sent me a Facebook invitation.  At the bottom, it had a section “Other people you might know on Facebook:”

And it listed people I knew.  But it wasn’t like it was a group of people who would be related somehow.  These people don’t know each other.  So how does Facebook know I know those people?!?

So I sent Facebook a very angry email.  I thought they must have hacked into my email contacts and found my friends.  I told them I know they must have invaded my privacy somehow and I demanded they tell me how they did it.

However, I think I know how they did it.  I did some googling and people with Facebook accounts can import their email contacts into their accounts.  I’m guessing Facebook held on to the name of everyone who imported my email into their account, then they just waited to surprise me with all my other friends.

Well I feel kinda violated.  I don’t like it.

And you know what?  I was going to get a Facebook account so I could see my friends’ photos, but Facebook freaked me out.  A little too much big brother going on in Facebook.  So no Facebook for me.  Sorry friends, no photo viewing.

I decided to start a new blog. After all, I do <3 blogging.

This blog is not about my day to day though. Its a research notebook. I’m looking up all the information the internet has to offer on HE and analyzing it.

Why am I doing this, you ask? Well, those of you who know me well wouldn’t ask why. The answer would simply be because I am a scientist, and that’s what I do when I’m curious about something…

But of course the other reason is the case study I may be working on with my doc. Rather than keeping all my twisted little thoughts and mad ramblings to myself in a Word document on my little Mac, I want to share it with the world! Now you all can read what I’m up to studying.

I don’t expect most of you to read it. It’s pretty specific and technical. But as I get closer to perhaps publishing something, it will hopefully begin to come together pretty nicely. But if you’re one of the folks who have HE (or think you might) then it might be something worth looking into.

http://henotebook.wordpress.com/

***Disclaimer/Obvious warning: I’m not a doctor, so nothing I write on the blog should be considered medical advice.

Researching like this is like the old days in school. It feels good.

I am not feeling well today.  Could be getting sick.  I frequently get sick after air travel.  Surrounded by people who aren’t nearly clean enough or considerate enough to keep their germs even mostly to themselves.

Some of you thought I was a germophobe before.  Ha!  Now that I’m immunocompromised, I’m even more so!  Still not at much as my sister though…

Anyway, I have been laying in bed most of the day, feeling mostly like crap.  I don’t think I’m relapsing though, because to test myself, I walked a straight tandem line successfully, then walked it backwards successfully.  Couldn’t do that with HE symptoms!  Couldn’t even do that a week ago.

I hope I didn’t catch a cold.  Hopefully I feel better tomorrow.

Today I haven’t been feeling right.  A little dizzy and lightheaded and I have a headache.  I’m thinking it is because I only got a few hours of sleep last night

Well I was walking down the stairs and got a little dizzy, lost my footing and fell down a few stairs.  I twisted my ankle.  I’m icing it right now.

I’ve also got researcher’s elbow (my ulnar nerve is inflamed).  I’ve probably got to put down my laptop.

So I decided I need to sleep tonight.  Maybe tomorrow will be a little better.

Ever since I was diagnosed with Hashimoto’s Encephalopathy, I have been focused on getting back to normal. My primary focus has been to do whatever I need to do to be the person I was 3 incredibly long and terrifying months ago. But that isn’t going to happen.

At my last visit, my doctor made a comment that I am so young to have this disease (most people don’t get it until their 40s or later). He said at 26, I’m still probably in the phase where I think I’m invincible.

I realize now that it was true. I did think I was invincible. I’ve done some pretty crazy things, intense sports, adventure travel, and loved every minute of it. When I’m perched on a cliff barely with a foothold, staring down hundreds of feet, with no harness or protective gear, it makes me feel alive. I know this is going to sound really weird, but I like sports that make me bleed, like climbing and fighting. For some reason, seeing the blood and bruises makes me feel like I have adequately pushed myself. Maybe I’m a little twisted, maybe a little masochistic, and maybe a little immature to think I would be able to do these things forever.

What’s ironic is that now that I’ve gotten a huge slap in the face that I’m not invincible, my “sick” life strangely parallels my “healthy” life. I used to look at my blood and bruises and know I pushed myself hard enough. Now I look at blood test results and know I’m improving. I’m pushing myself hard enough by enduring all the treatments and side effects. I used to put myself in dangerous situations and feel alive by getting myself out of them. Now this illness is my dangerous situation, and I am fighting like hell just to stay alive and as normal as possible.

I’ve done about 10 hours of research today on HE. I just read the story of a woman who has been dealing with HE for 14 years. She was pretty much the pioneer of distributing HE information in the US. Her story really got to me when she talked about the permanent changes HE causes, and just how aware we (the patient) are of those changes.

Permanent. That’s what I was trying to avoid (or ignore). But the damage is done already. Some changes are now permanent. I’m a new me now.

Beverly Seminara writes:

Sometimes it seems like our Brains are going too fast. Like a ping pong ball out of control inside our heads. Going in different directions. Unable to stay on the subject. Often we do not complete our sentences before our mind jumps to the next thing we want to say, and knowing we did not finish what we were just saying. A game of Leap Frog that we do not want to play. How frustrated we are with what is happening and how helpless we are to stop it. Importantly, how aware we are of all that is happening.

I hate that part. I used to be the most eloquent person I know. I took pride in it. Now words just don’t come to me as easily. I can especially tell the difference when I read some of my older blog posts. I’ve definitely lost some of my expression and articulation. And I was never the greatest speller, but I noticed I misspell things much more often now. Thank goodness for spell check!

Beverly also writes about getting “clever” to try to regain a somewhat normal life. Things need to be adapted. I think I first need to adapt to the idea that I’m different now. Then I need to adapt by re-learning how to use a tweezers to pluck my eyebrows without losing an eye. After all, I only have two eyes. Then work on my handwriting again, and my other fine motor movements. And get used to all this damn muscle twitching.

And here’s a bit Beverly writes for YOU (the loved ones):

I always say to the family members: For the person with H.E. – What YOU do without any effort whatsoever; what YOU do without even thinking about it; what YOU take for granted and do so easily; what YOU do so fluidly – a person with H.E., whether it be forming a sentence, picking up an object, attempting to multi-task, which is now a thing of the past – what is EASY, NATURAL, NO EFFORT for YOU – for a person with H.E., it is an exhausting and enormous effort. And we know it. We are so aware.

Exhausting is so true. I’m exhausted all the time. Even having a long conversation is exhausting. Every day takes enormous effort.

I used to be the type of person who would push myself so hard physically, mentally and emotionally just to see how much I could take. I used to run to the gym. Then I biked to the gym when I moved too far to run. Then at the gym, I’d work out until my muscles would tremble and I couldn’t do anymore. Then it would take me forever to get home of course because I was running or biking while physically drained. That used to be my definition of “exhausted”. Or the end of a 10 hour hike used to be my “exhausted”.

So I’m trying to adapt to “new me”. I mentioned in a previous post that I asked the airline for wheelchair assistance because I didn’t want to wear myself out. I sent my boyfriend a text that morning telling him I got the wheelchair. He replied, “why are you in a wheelchair?”

I know he didn’t mean to upset me. He probably forgot our conversation and was probably concerned to hear I was in a wheelchair. But it is hard that no one I know personally understands what I’m going through. I wanted to reply, “I’m in a freaking wheelchair because even walking a few yards tires me out. I’m in a freaking wheelchair because I get so dizzy sometimes its hard to walk. I’m in a freaking wheelchair because I shake so badly I drop things. I’m in a freaking wheelchair because it is probably less embarrassing to be stared at in a wheelchair than being stared at because I’m the girl walking around unsteady, shaking and dropping things, looking like some kind of addict.”

Instead I replied kindly and told him it would just be easier that way. And it was easier. There. I adapted something.

I am not going to be that person I was ever again. My days of extreme sports, adventure travel, and getting lost in the wilderness of foreign countries are probably over. I’m even giving away my unfinished dollhouse. (For those of you who don’t know, I love building dollhouses.) My boyfriend’s sister wants to finish it. So it is probably better to give it to someone who will finish it, than for me to stare at it every day and remember I can’t do the intricate work with my hands I used to be able to.

New me needs to be more adult-like. Not about the bills and stuff like that, I’ve got that down. I have to be more adult-like about accepting my limitations.  I’ve got to play with these new cards I’ve been dealt.

Don’t misunderstand this as me giving up.  I’m not giving up at all.  I’m not going to let this disease beat me.  It may have maimed me a little, but it hasn’t beaten me.  At the same time, you all need to understand that I’m probably never going to be 100% better.  So please be sensitive to that.

I’m still a scientist at heart (and in mind).  You’ll see soon enough what I do with all the research I’m doing.  I’m going to make something good come out of this.  But now it is 2:40 in the morning and my acid reflux has finally died down enough so that I might be able to get some sleep.  Good night!

To argue with a man who has renounced the use and authority of reason is like administering medicine to the dead. – Thomas Paine

I just woke up to the reality of the health care debate that has been going on for the last year.

Are Obama and Congress out of their minds? They want to create national health care, which sounds like a great idea. But did they do their research and find out that it doesn’t work well for other countries? People in Canada and Europe have to wait months just for a dentist appointment! My dad had to wait 18 months to get cataracts surgery (he lives in Europe).

Think about it. If all the people who normally wouldn’t have gone to a doctor (due to not having insurance, or high costs, or whatever) go to a doctor, that’s a hell of a lot of people who will now be making appointments. There just won’t be enough doctors to see all those people in a reasonable time.

And if everyone is paying the same amount to see the doctors, then wouldn’t everyone want the best? So appointments with good doctors would be almost impossible to get. Perhaps those really good doctors would just stop taking insurance altogether and then only the really rich who could pay cash would be able to get the best healthcare. Which is exactly what is already happening.

What about those of us in America in the “young people with crazy illnesses who are otherwise healthy club”? I can’t wait 6-18 months or more for treatments. I could die! And I don’t want to get stuck with the crappy doctors. Again, the dying thing. My so-called “Cadillac health plan” has saved my life. And now it looks like I won’t have that option for much longer.

Let’s talk about the American Dream. Let’s talk about why we came to this country in the first place. Has everyone forgotten about “No Taxation Without Representation”? If 50-70% (depending on the source) of Americans are against this Senate Health Care bill, then why the hell does it look like it is going to pass?!?

Can you say “tyranny”?

Ok, so why am I so upset? And why is Obama trying to kill me? Well the nature of my disease requires quick response, and unique and expensive treatment. If this bill goes through, I’ll be put in line with everyone else from the common cold to cancer. I won’t be able to get to see the specialists quickly like I need to. Again, I could die!

I don’t want to sound like I am against the poor having health care. However, I worked hard my whole life to go to college and get a good job so that I could have good health benefits. Sorry of I sound like I have a delusional sense of entitlement, but I think I should get the benefit of faster treatment and higher quality health care. I worked for it!

Didn’t all of us who went to college go because we wanted better jobs, more money and better benefits? We don’t live in a communistic country. In this country, we are supposed to be able to work hard and reap the rewards of that for ourselves. Obama wants us educated folk to work hard and get taxed harder so others can reap the benefits of our hard work. How does that sound fair? How does that sound like America?

Oh but don’t worry, Obama says those of us happy with our private health care can keep it. The biggest joke is that Obama claims that it is the employer that will have to pay the additional taxes on the private health care, not the individual. Ha! As if
employers will just happily cut into their profits to cover the 40% tax. That will all come down the line to us workers. Probably in many job cuts. Probably in no longer offering those great health plans that make us even want to work for the company in the first place.

So I just spent (wasted) a lot of time writing to senators begging them to not let this bill pass, begging them to help save my life. I need good insurance!

Fortunately, my company has already planned out insurance for next year. My out-of-pocket costs have gone up, but I still have the options/freedoms of all the specialists. And I believe I will (for a while, at least) get my speedy appointments.

So I just have to go into remission by the end of next year. And I guess never get sick again…

I went ahead and told the airline I needed wheelchair assistance.  Why risk any heart problems by overdoing it walking through airports?

Mornings are always rough for me, lots of nausea and shaking.  So I wasn’t doing the greatest when I got to the ticket counter.  They got the wheelchair for me and wheeled me through security, then to the gate.  I didn’t appreciate all the people staring at me.  And I guess the nervousness from all the people staring made me shake even more.  I could barely even hold onto my ticket.

I got to board the plan first, with all the other people in wheelchairs.  It was nice not to be rushed because I did need the extra time to get down the aisle and get my little bag situated under my chair.

Then it was Xanax time.  Even feeling healthy I don’t like planes.  So I took a Xanax.  I felt nice and relaxed on the whole plane ride.  I even fell asleep a few times.  And I was able to handle the landing without any anxiety.  That has never happened before.  Normally I’m a total wreck just before the landing, but this time it was no big deal.  I guess Xanax works.

Once I arrived in Dallas, I waited to deplane last.  I saw a wheelchair outside the door to the plane, so I sat in it and waited.  No one came for me.  The pilot said he would push me up the jet bridge.  Talk about full service… I was then carted to my gate by one of those Passengers with Disabilities Assistance Carts.  The service was great.  I was then able to board the next flight, again with the other wheelchair folks.  I took another pill to be able to stand the second flight.  I slept through most of the flight, then finally landed in Florida.

The wheelchair assistance lady helped me off my flight in yet another wheelchair, even offered to take me to the bathroom (which I declined), helped me get my bag from baggage claim, then took me to my mom’s car in the airport parking garage.  I have never gotten such great service from American Airlines before.  I guess I have finally realized one benefit of having a disability.

It was really great to see my family.  Like, REALLY great.  For a little while with my illness I actually thought I might die, so that really made me miss my family.  Seeing them and being with them is pretty amazing right now.

I’ve just been chilling.  I’m actually relaxing.  I’m also doing a bunch of research on HE.  I’m focusing research today on treatment differences from different countries.  It feels good to not have any stress right now.  [long, satisfied sigh]

Unfortunately this morning wasn’t a great morning.  I hardly got any sleep last night.  I was kinda dizzy and had quite a bit of nausea today.  However, most of that subsided by this afternoon.

I am headed to FL on Sunday.  I am looking forward to it, but I’m also terrified to make the trip.  Little known fact: I get anxiety on planes.  And now that I have all these other health issues, it is turning that anxiety into terror.

I told the doctor about it and he prescribed me some Xanax to take on the plane.  He suggested I take one today just to see how I’d react to it.  Now, I have never taken any type of drug like this before.  The closest I’ve been exposed to drugs like this is when I had to give a sedative to my dog for a flight.  She walked around really slowly and just looked around a lot.

Well, I took one this afternoon and I think I know how she felt.  I kinda felt like I was in slow motion.  It wasn’t bad feeling actually.  I hope it will help with the flights.

Anyway, I have a hundred million things to do before my trip.  I’m kinda going out of my mind because I know I won’t be able to get to them all.  My list just keeps growing…

And I planned a holiday party for my boyfriend’s family tomorrow.  So while cooking a full holiday feast, I have 13 other things to check off my list tomorrow.  Sigh.

I am feeling very valiant today.  I might be on my way to working on a study with my doctor and getting published. [More about that later in this post]

I visited the doc today.  I’m looking pretty good considering the steroid side effects (which I can’t do anything about).  He was thrilled I was actually getting better.  Me too.

He still is being conservative by wanting to lower the steroid dose.  I’m still being aggressive by wanting to keep it high.  We talked about staying 3-4 months on the high dose steroids, then tapering down and doing monthly IVIG blood treatments.  I’m good with that plan at this point.

My TPO antibodies have lowered to about 1600 (from 2400).  I think that’s a pretty good improvement.  We’ll see what we can do to take it down to the normal range below 60.

We also discussed a retention cyst that was found in my medial right maxillary antrum (a fluid sac in my sinus cavity).  The hospital said it was nothing, however I read that these can cause headaches.  So my doc gave me a referral to an ear/nose/throat doctor to see if I should have it treated, considering I always have headaches.

I don’t know if it is the steroids, insomnia or an old neck injury flaring up, but my neck and back have never hurt this much.  It is causing bad tension headaches.  So I was prescribed physical therapy for the next 2 months.  I’ve had physical therapy for my neck injury before, and it helped, so I’m looking forward to it (provided I have the time to do it).

Back to the study…  The folks on the HE forum have expressed interest in getting all of our medical information compiled and studied by doctors.  Well, naturally (being the sciencey type) I volunteered to draft a medical questionnaire and compile everyone’s data.

I discussed this with my doc and he was interested in being involved.  We’d like to get some statistics.  We talked about publishing.  So that’s my new project (or pipe dream). 

It’s 11:21pm now.  I should be attempting to sleep.  I should have packed for my trip to FL.  But I’m a giant geek and I’m just super excited about getting into this data!  So I have spent all evening doing research.  Ah, just like the old days…