Saturday, September 15, 2012

On a Particularly Bad Day...

With GP, there are always good days and bad days. Unfortunately you can't predict them, and they have an uncanny ability to occur on days where you actually have to be productive. The bad days, for lack of a better term, blow. Constant, annoying nausea that refuses to wane even with the aid of two anti-emetics. Tiredness, weakness, irritability, and quite often, a good puke or three.

I've had the lucky ability to have about 4 bad days in a row this week. I've considered not eating to save my throat from puking, but I have about 6 hours of actual work on Monday, and I need to fill up on energy this weekend. So, puking aside, I've been pretty down and pissy.

Also-Stanford is playing USC right now and without Andrew Luck as quarterback I'm terrified we're going to lose. No faith in the new QB yet. I HATE when Stanford loses. Talk about bad days...those are the absolute worst.

So, because I've been moping around all day, I had the bright idea to come up with some instagram goodness of things that do make me happy. It'll be nice to have a virtual pick me up available whenever I'm feeling overwhelmed.

Regardless, Stanford had better win.

Friday, September 14, 2012

Changes, Changes, Changes

After finally receiving a positive diagnosis of gastroparesis, I thought all of my problems, both physical and mental, would be fixed. In my mind, I saw diagnosis as a cure, and had relentless optimism in pursuing my doctor to find whatever the hell was wrong with me. (I honestly feel bad for the nurse on call at the office, I must have harassed her daily for almost two weeks, and I could tell she probably hated me by day 4 of it.)

However, I never, in all that time of multiple procedures, thought of the difficulties that I'd face post-diagnosis. The philosophy I'd always experienced with doctors in the past was "find the diagnosis, give you the cure, and that's that." And it did work like that throughout my childhood and as a teenager. Strep throat again? Here's antibiotics-you'll feel better within a week.

But when faced with a diagnosis of a chronic, incurable condition, the post-diagnosis stage is even more difficult, and far more depressing than any experience I've ever had medically.

Every day, every week is just a series of changes. Change this med, add another one, stop taking this one. My poor central nervous system is in all honesty, probably telling me to fuck off from all the different medications I've been putting into my body lately as an attempt to reign in control of my GP.

The optimism disappeared about a month after my diagnosis and my first experience with the only US legal drug to help with GP, reglan. Being the hypochondriac I am, I of course freaked out over the side effects and convinced myself that within a week, I would have full blown tardive dyskenesia and would be throwing drinks all over people (I was a bartender at the time).

Unfortunately, (or fortunately, depending on which side you take), the reglan made me extremely depressed and also had the unique ability to make me pass out within a half hour of taking it, which rendered it fairly useless in its goal of allowing me to eat more than once a day. (Currently, I stick to one meal at night so if i puke it up, at least i won't be doing it in the UCEN bathroom at school. Trust me, the 'are you bulimic' thing gets really old after awhile.)

Thus, another change. My GI doctor and my psychiatrist, who apparently have been playing phone tag for the last three weeks, somehow made a group decision that reducing my anxiety about food would probably be a better first step than, you know, stopping my puking. Cue frustration, a step back, and more changes.

Of course, being of the special 1% of the people on the planet who experiences side effects of literally every drug i put in my body, the anti-anxiety and depression pills I'm on aren't working correctly. Cue more frustration, another step back, and another addition of a different drug to ensure my already large laundry list of drugs were working properly.

The most frustrating part of it all is that the GI doctor won't put me on any sort of stomach medication until all of the other drugs affecting my CNS stabilize. Which means another month of alternatively puking/not eating to save my throat while dealing with all of the side effects of the constant drug changes.

The point is, I'm frustrated. and tired. Tired of all the changes, tired of waiting for a point of stability, tired of trying to stay positive and imagine a somewhat normal lifestyle within the near future. It is so mentally exhausting trying to keep a smile on my face, attending class, starting a job, all while knowing that it'll be another month until i'm at least allowed to TRY a medication to help my stomach. and of course, it'll have to be a drug from Canada because reglan sucks.

And of course, the cure to mental and physical exhaustion? Food. If I can keep my glorious diet of gerber graduates entrees down, I'm running on about 300 calories a day, and pretty much everything exhausts me at this point. Today, for example, I went to the psychiatrist, got prescribed a new med. Filled the prescription, went over to campus to work on some enrollment issues, went to orientation for my new job as a swim instructor. Total amount of time involved? About six hours. But right now I feel like i decided to run a full marathon without any training. It's 7:45 and I could pass out at any second.

The point is, I'm tired of all these changes and so just ready to find a combination of drugs that will allow me to live my life in a somewhat normal fashion. I'm not stupid, I understand my quality of life will never be what it was before, (not that I particularly want to revisit the alcohol-fueled partying of the past few years), but I want more than this. I want to be able to complete a few tasks a day and still be able to function after it. To be able to hold a conversation that isn't another whining session about how hard my life is.

However, it just doesn't seem like that is yet in the cards for me. Here's to holding out for another month and attempting to retain some of the former optimism i used to hold every day I woke up. Here's to another month of not over-pushing my food boundaries, and making my goal of 'no barfing for one week'.

Best wish me some luck, I've been running low on it for the past year. If karma is a bitch, I must have been a hell of an asshole in my past life. But here's to hoping that this is the beginning of the end of changes. I could use some stability right about now.

Thursday, September 13, 2012

Once Upon A Time..

Once upon a time ago, i had everything. And before i realized it, i lost it all.

But have i really?

At the age of 24, with a recent diagnosis of gastroparesis, a chronic illness which stops the movement of the stomach and comes with a debilitating array of symptoms, including constant nausea, daily vomiting, exhaustion, and frequent trips to the emergency room.

In fact, i'd say i have the qualifications to become Goleta Valley ER's patient of the year, two years running, given the multiple misdiagnoses i've been presented with. (For the record, pity the employees of this hospital, I raise holy hell anytime a needle is involved in a hospital visit, which tends to be every time.)

Gastroparesis isn't as simple as described-it also comes bundled with constant anxiety and fear concerning eating, depression, daily weight and mood fluctuations, and social isolation.

Perhaps the worst symptom of gastroparesis is the isolation that comes along with it. You never realize how much human social interactions (especially in college!) involve food and/or alcohol until you begin to repeatedly decline invitations to hang out, grab lunch, have a beer and watch the football game (Go Stanford, for the record).

It's a difficult condition to explain to friends and family, who theoretically hear and share sympathies with you, but who truly cannot comprehend a lifestyle where puking several times a day is normalcy, and keeping down half of a fruit smoothie is considered an Olympian-esque victory. In fact, over the course of this summer with an 8am class, I have devised the motto "puke and rally" into my morning routine.

The most common explanation for how gastroparesis feels is usually something about feeling like you have the flu, without the expectation of feeling better after a few days of your head in the toilet. Most people know how it feels to have the flu, but most people don't know how it feels to have the flu without the optimism of a healthy self in the near future, or comprehend the large variety of side symptoms that come along with throwing up so frequently-the chest pain, burning throat, and constant exhaustion to the point where starving feels better than trying to eat.

With gastroparesis, you slowly lose touch with friends, just because you often feel so tired or worried about puking (which is, of course, totally socially unacceptable, especially in a college community) that it isn't worth trying to maintain a connection. Family remains there for you, but can only really listen to you cry and whine about feeling awful to a certain degree before they lose interest.

The people who are there for you are ones you treasure. Whoever your support system may be, if they stand by your side through puking, complaining, boredom,(because they can't do anything besides lie around with you), mood swings, anger, and depression, they are difficult to find and are truly strong people, because they bear their own life on their shoulders, as well as yours.

Thus, once upon a time I had everything.
And this condition has slowly stripped away some of the simplest joys of life.

However, I have created this blog for me.

An outlet for my anxiety, my fears, my daily struggles, so that I can, for the first time, have control over my gastroparesis.

And perhaps to show others that over time, normalcy can be found in the chaos of such a daunting, debilitating condition.

I'll keep you posted.