Now You See Him, Now You Don't

The frustration with invisible disabilities comes from people not believing  or understanding my condition.

Most of the time when I go to Disneyland I've found their Disabled services helpful and courteous...once they realize that I'm not lying. I understand the challenge that comes with discerning a person with disabilities needs. Disney has gone out of their way to create systems to promote and help every guest have the magical experience.

Last week, I was met with a new change in policy, which I became familiar with following my discussion with Guest Relations.

(The Disability Access Service(DAS) policy now allows some rides to not require a DAS pass if they see a physical impairment like a wheel chair or knee brace.)

After explaining that I'd previously been issued a pass due to my inability to sit, stand, or walk for extended periods of time,  explaining how ascities work, and fatigue that also comes along with advanced liver cirrhosis. She asked if I used a wheelchair or cane at home, to which I responded that I have a cane for when I need it. I then reiterated how ascities impairs one's normal functions.  and that I've done this before, I've gotten DAS passes to help enjoy the park with my disabilities.At this point it became evident she did not believe me. She said there was a recent change in policy, suggested I use a wheel chair or cane, and continued to explain the rides at which they would allow me to use an alternate service because of a visible impairment. I reiterated my need, unable to explain my point further due to my lack of knowledge as to how the new policy had changed.

To help explain, as someone who doesn't outwardly appear as though I need the assistance, being  in a wheelchair or using cane creates a different experience. Some either speak to me like a child, or speak to the person wheeling me around. Those who think I'm gaming the system, will walk up next to me, and talk about me. The more timid assholes just make comments and stare. I have no interest in evoking these reactions; alongside the challenges of navigating Disneyland in a wheelchair when I do not always require it. Which, when a guy like me walks around out of his wheelchair...every stare, ever comment just gets worse.  So without a DAS pass, I instead have a choice wherein I can attempt to deal with shorter lines that I can find; or grab a wheelchair be allowed to use the services on a few rides, and sit back and "enjoy" the rides.

I applaud Disney's efforts in helping anyone and everyone have a magical day, but it's distressing and frustrating to be met with outright opposition by staff because of a lack of understanding.

Excuse me, miss.

Sometimes priorities seem strange. On Monday, in all my haste I took my medley of pills, but left an important one out.

All of my alarms set to the tune of Taylor Swift songs, and people reminding me didn't help. I'd even had it with me to make sure that if I'd stayed too long at the Christmas party I was attending, I'd have it.

(if you're curious why i set it to Taylor Swift songs, it's pretty simple. The songs i pick catch most people's attention, aren't offensive, are positive and upbeat, and they're really catchy.)

I had all of my pills in front of me, and I was momentarily distracted while taking them. With my memory being hazy, I left thinking I'd double checked. But today when I got home, I saw it sitting where I put the pills I'm about to take.

I missed a pill. I forgot to take my Harvoni.

In all my years, in all my treatments I've never missed one. I've been a touch late in taking a Ribavirin, but I underestimated my greatest enemy in this; myself. As the years progress, and my condition worsens I am glad that the treatments are getting easier, because routine will press upon me to forget. The benefit of habit and routine is doing something the same every day, and making it easier to remember.  And when it's important, those close to you ask  "did you take your pill?" my routine response is yes. Therein lies the trouble, that ease of memory is a double edged sword, as in my case.  Having a  generally foggy memory without lactulose doesn't help. Because when I thought back, I'd unintentionally created a false memory because of my routine answer. I remembered everything up to that pill, and everything afterward, and the circumstances were basically normal.

So what does that mean?

Well, I don't know, and really nor can anyone tell me. as there isn't enough data to show what happens when you do forget.
Turns out they don't want someone to intentionally forget a pill, when a potentially billion dollar study for FDA approval comes around.

As to what becomes of this missed dose, and how it will affect me, how I move forward... I'll keep you informed. In situations like this a little knowledge can mean writhing in pain, or walking upright. Sharing this knowledge is important. (While the info will be here, I will also be posting an exclusive comprehensive of this, related Harvoni info, and any results on HepMag before the solstice.)

As for tonight, I took my pill, and I sure as hell won't be missing another one.

Now, to Shake it off.

Kanye knows

After a week of some of the most voracious ascities I've had yet, my feet finally look like feet. While on Harvoni i'm limited to a half dosage of my diuretics. I assumed this would be the case as they are the most likely drug interaction to cause an issue with...anything. seriously though. anything.

Reduce that swelling and Jaundice!

Diuretics, while fantastic at their job also purge the body of lots of other things, which is why caution applies to my continued taking of them while on Harvoni. But this situation I've been dealing with has been coupled by a newly growing side effect.

Fatigue.

Being tired may not seem so bad, but as my 10 hour night, tack on 3 hours of naps, then 6 hours of naps. I can do even less in a day. I find myself constantly fighting off fatigue, it's odd, because the only way I've managed to fight it off is to keep moving. It's when I stop that I just fall asleep.

I know that bottle says "Side effects may include fatigue." but there really should be levels of fatigue. Because if i get past 20 hours of sleep a day, that's not fatigue that's hibernation. 

So if you see me doing some jumping jacks or random stretches while having a conversation, the fitness I'm into, is fitness energy back into my day.

Dear Fast food

Dear Fast-food,

When I was a kid, I used to love you. Unusual combinations of tasty treats, perfectly done cheeseburgers and magical pizzas.

But as I've grown older I'm afraid we need to take a break. While you catered to fat content and calorie intake labeling you neglected one big problem. And unfortunately it's kind of a deal breaker. over the last year I've realized the importance of watching sodium levels, I had no idea it was the source of my yo-yoing weight (going from 150 to 190lbs in less than two months isn't healthy nor is the reverse). My liver condition makes me extra cautious of sodium, and I try to keep it at about 1,000-1,500 mg per day.

But the thing is... even if I ate what is normally healthy (2,300mg) I still would be unable to eat any of your finely crafted foods! With the average American consuming morethan 3,400 mg of sodium per day, it's no wonder childhood and adult obesity is such a problem.

I'm not alone in my low sodium needs, it turns out children, seniors, and others overall accounting for nearly half of Americans are in the same boat. with the rise of fatty Liver disease (and NASH later in life), I can't be seen with you until you drop that sodium level, to a responsible amount.

What do I mean by responsible?

if you serve an item, which is 20% of typical calorie intake, keep the others in balance too. When Fat/Sodium/Cal are all kept at the same ratio of their respective daily intake it helps, I'm not suggested a menu overhaul, but rather a heart and liver healthy option. Potassium (cloride) is salternative however it too should be kept in balance if added.

Because when it comes down to it, if I'm on a road trip, I don't have many options. And I hate feeling that dirty feeling after an indulging meal. I love what we had, fast food...maybe we'll see each other again someday.

-Rick Nash

Party Trays

It's been over a week since I began the Harvoni treatment. It's by far the easiest one I've done. The side effects from it only enhance my existing symptoms. 

To say that any treatment is a breeze would be far from the truth, but one pill a day without the need to take it with food... it's a dream come true.

What's the big deal about taking a pill with food you may wonder, it's more of an associated distaste for whatever you eat your pills with. In order to accomplish the fat requirement with incivek I ate mini donuts with my pills, more than two years later I still can't eat them without feeling sick to my stomach. Even on a milder treatment like the last one, I can barely eat the fig bars I would so frequently eat to ensure my pills be taken with food.

While my doc OKed to use of my diuretics at half their present dosage I am reluctant to use them. The reduction of any potential interactions has always been a preference of mine. It's hard to know what kind of reactions will come from drug interactions. Recently I've learned the value of really keeping track of  my sodium levels, but just this last week I discovered something else I should look out for.

Ammonia. My body doesn't process things properly, and Ammonia is one of the major factors in Hepatic Encephalopathy. While I have lactulose, I seldom carry it on me, I have it in locations I frequent. the brain fog of encephalopathy (I have stage 2, Moderate HE) has very interesting triggers. While I must consume protein in large amounts to fight off muscle wasting, I can't consume too much or I risk triggering encephalopathy. It's yet another reason why I need to drink plenty of water, but the one thing I didn't think about was how present ammonia is in food.

Apparently I discovered the worst culprit of ammonia-high foods. A meat and cheese party tray.

Thanksgiving is already an interesting minimalist meal when sodium is a limit, but the idea of ammonia-high foods hadn't crossed my mind. After indulging in some meats/cheeses/crackers from a party tray, I assumed I would just have to watch my sodium balance. The brain fog came within a few hours, and thankfully I was able to determine what it was quickly and convey it.

To better prepare myself I found this handy chart for watching my ammonia consumption.

Apparently I'd decided on consuming from the top ten, a mistake I won't make again.  Keeping the balance is a priority. Similarly finding high protein foods with low sodium, and high carbs is never easy, but luckily Fresh and Easy carries an enriched egg pasta with super high protein. it's quickly become a staple in my diet.

Using more fresh ingredients and modifying menus off http://www.budgetbytes.com/ as well as using their grocery-recipe builder has made things much easier, and I recommend checking out the website if you haven't.

As for the Harvoni itself; to expand on what I mean by existing symptoms, I shall walk you through a day.

When I wake up, regardless of how much I sleep, or how much water I had the prior day, I wake up with feeling tired, and with an odd headache. The only way I can describe it, is as if my brain were scraping against a brillo pad. I'll fight the next few hours trying to avoid falling asleep, thankfully my GI tract will keep me awake, purging my system of anything left from yesterday.

If I fall asleep I'll wake up with a very specific hunger, it's a low blood sugar hunger. my body often mimics (typically nocturnal) hypoglycemia due to my inability to process most foods properly.

my eyes will feel strained within an hour or so, due to inconsistent blood pressure and random surges.

If I don't move much for any period of an hour or two, my ascities will show enough to stiffen the joints, but rarely more due to my proper balance of diuretics, water, and sodium intake. If I don't consume enough water/ magnesium, my legs will spasm out of control.

Emotionally I wear my heart more on my sleeve, having a hard time not being caught up in emotional moments.

As the day progresses my hunger dissipates and I can't tell until a few minutes beforehand how hungry I am. If I don't eat within a short time of that hunger, I'll simply fall asleep, and wake up with a headache.

Much like some people watch calories I watch my levels. Sodium intake, ammonia intake, protein intake, vitamin D intake, water intake, and how frequently I go to the bathroom. My remaining diet will respond to my analysis of my bathroom trip. Knowing colors, consistency, and unusual properties are essential to making sure a daily diet is healthiest.

As the evening approaches and I take my Harvoni, a dinner prior and a small dinner afterward fend off any potential hunger issues, and attempt to ensure tomorrow I won't wake up with a headache. by This time, no matter how much I've moved about, or what I've eaten I feel a jabbing sensation in my lumbar region, usually accompanied by the feeling of my right side being squeezed by a bony hand.

After the insomnia fades, I'll bounce between sleeping and awake for a few hours until I end the day with a 3-6 hour night's sleep.

Those are not the enhanced symptoms, everything I just said is now more pronounced.

If you were to meet me for lunch or hang out for a while, you may not notice. I seem a lil tired. "have an energy drink." some may say, because I look alright otherwise. When I was younger, this was irritating and frustrating, but as I've lived with this for so long now, it's easy to forget. And I'd rather people do forget, because this shouldn't define me.

So in belated thanksgiving,  I am thankful for my friends, family, and girlfriend for forgetting when it's not important, and remembering when it is. I am thankful that this will be the last thanksgiving I have to be thankful for a treatment, for a potential transplant. (And for another MRI with no liver cancer, yey!)

Sometimes symptoms begin to surface, and I slur my speech, my legs balloon, I turn yellow, and I say weirder things than normal. To help prevent that,  just keep me away from the party trays.