Name: margalit
Location: Massachusetts, United States Professional writer, educational advocate, opinionated ultra liberal mother of 18 year old twins, living life in the slow lane due to hypertrophic cardiomyopathy, congestive heart failure, and diabetes.

email: margalitc at yahoo dot com

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Saturday, August 18, 2007

Sometimes I ask myself what's the point of eating?

The other day, I was pulling into a parking space in front of a satellite hospital building for an appointment with my primary care physician. The space was a handicap space to the right of the side doorway, where people wait for valet parking to bring their cars around. The Girl and I looked and saw a very thin, very bleached blond smoking a cigarette right in front of the door. That's not allowed in ANY Massachusetts public building, and especially in front of a medical building.

As we opened the door, the woman started to walk towards our car. I got out, the Girl got out of the passenger side, and walked around to meet up on my side. As we started walking, Ms Bleached Blond said "Well, You don't look very handicapped" like it was her business to comment upon my right to park with MY placard (including my photo, birthdate, and expiration date of placard, all of which were in order and uncovered). I was flabbergasted. Never had anyone been so outrageously rude about my right to park in a handicap space. The Girl looked at me in horror because she knows what I mouth I have when I'm pissed. "What the hell business it of yours what my handicap is, you C**T" is what I said. She was ready to start a fight, but I just walked away into the medical building as a security guard walked towards her.

I was seething the rest of the day. I mean it, I was literally bullshit. When a person has a legitimate tag displayed in a car with her photo, name, DOB, and expiration date on it, who the hell thinks it's OK to question a handicap. Obviously it was a legal tag. In MA, many people use tags that aren't legal. That is because the RMV allows, no PROVIDES those with hangtags a sliding coverup to hide the photo, name, and identifying information of those to whom the tag is issued. A recent study found that of 1000 tags, almost all of them were being used improperly. I've seen it happen. But even when I am sitting and waiting for a legitimate handicap space and I see a young mother who is obviously healthy as a horse get into a car with a hang tag that couldn't possibly belong to her, I wouldn't challange her. As long as there is a tag, the only people that have the right to challange the tags are the police. Not some half drunk asshat smoking illegally in front of a doctor's office.

Anyhow, it bothered me probably more than it would have before certain "special" bloggers decided that I wasn't really handicapped and that I could definately go to work despite what my cardiologists (yes, that's plural) and the American Heart Association say about patients with congestive heart failure Stage 4.

Although much progress has been made in the treatment of heart failure, there is a 20% overall annual mortality, particularly in patients with New York Heart Association Class IV symptoms.2 Many patients succumb to progressive pump failure and congestion, although half die from either tachycardia or bradycardia-induced sudden cardiac death. Some patients die from end organ failure resulting from inadequate systemic organ perfusion, particularly to the kidneys. Indicators of poor cardiac prognosis include ventricular arrhythmias, higher NYHA Heart Failure Class, lower left ventricular ejection fraction, high catecholamine and B-type natriuretic peptide levels, low serum sodium, hypocholesterolemia, and marked left ventricular dilatation. Patients with combined systolic and diastolic left ventricular dysfunction also have a worse prognosis than patients with either in isolation.3

Stage 1 includes patients at risk of developing heart failure but who have no structural heart disease at present. These include patients with hypertension, diabetes mellitus, coronary artery disease, use of cardiac toxins, and familial history of cardiomyopathy. Strategies to prevent ventricular remodeling, including ACE inhibitors in selected cases, are advised.

Stage 2 includes patients with structural heart disease but no symptoms. The use of ACE inhibitors and beta-blockers is recommended.

Stage 3 includes patients with structural heart disease and symptomatic heart failure. Diuretics, digoxin, and aldosterone antagonists may be added to ACE inhibitors and beta-blockers depending upon the severity of symptoms. Cardiac resynchronization therapy also may be considered in selected patients.

Stage 4 includes patients with severe refractory heart failure. Physicians are urged to consider either end-of-life care or high-tech therapies such as cardiac transplantation, based on individual cases.

While a simple rule for the treatment of all patients with heart failure can not be formulated because of varied etiologies, hemodynamic features, clinical manifestations, and severity of heart failure, insofar as the treatment of chronic congestive heart failure is concerned the administration of an angiotensin-converting enzyme inhibitor has been shown to retard the development of heart failure and should be begun early in patients with cardiac dilatation and/or hypertrophy, even if they are asymptomatic. Then, as symptoms develop, simple measures such as moderate restriction of activity and sodium intake should be encouraged. If these and the use of an ACE inhibitor are insufficient, therapy with a combination of a diuretic, a vasodilator, and usually a digitalis glycoside is then begun. The next step is more rigorous restriction of salt intake and high doses of a loop diuretic, sometimes accompanied by other diuretics. If heart failure persists, hospitalization with rigid salt restriction, bed rest, intravenous vasodilators, and positive inotropic agents follows.

I thought you might find it interesting to see what a stage 4 CHF patient takes every night. It is probably the reason I can't make myself eat breakfast in the morning. I'm too full from the pills. That would be 13 bottles of pills. I take these at night. There are more pills in the morning. I'm such a lucky duck!

Kinda of astounding, isn't it? Just so you know I'm not faking illness so I can be a welfare queen and sit on my ass all day eating bonbons and watching the soaps before I take my cadillac out for a spin around town, and then return back to my palatial mansion for a dunk in the pool.

See that water glass? That's the palatial pool. I take every one of these pills all at once. I'm a master of stuffing huge amounts of pills down my throat. The two big white ones on the left? Metformin. The two colored ones on the front left? Effexor. Green pills, Vitamin D and Allegra. Pink in back? Verapamil. Blue in front? I can't remember what it's called. The darker pink is my Lisinopril. The square one is Singulair. I can't remember which is which in the photo. I take them every day. It is too much to remember. One is the lorazapam. One is fexophenadine. One is simvastatin.

Whatever. Let's just way it's way too much medicine.

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Blogger JaniceNW said...

That bleached blond really got to you, didn't she? I know it sucks to have an illness others can't readily see and therefore question you if you're REALLY sick or just trying to scam the government. The who are important do know. We also care. I hope you can rise above the petty and the ignorant and remember those who care for you.

Should a snotty comment from a total stranger tweak you so much? I'm NOT criticizing you, I'm concerned about your stress levels and don't want some twerp getting you all worked up.

I know exactly what CHF does to a person and how few types of treatment work on this disease. Let the haterz rant and rave while you laugh in their face.

18/8/07 3:34 AM  
Blogger Misfit Hausfrau said...

I was always in awe of the amount of pills my father took (he had the same disease).

Are you on a list for a transplant? My father received a transplant and did really well with it.

Be well.

18/8/07 7:05 AM  
Blogger Christine and FAZ said...

Impressed with the pill swallowing - I am lucky enough to be a healthy adult but was a sickly child and will avoid taking pills at every opportunity. Stay as well as you can.

18/8/07 8:28 AM  
Blogger DeeJay said...

Golly, that's a lot of meds! Wow!

18/8/07 8:38 AM  
Blogger Blog Antagonist said...

My Mom has CHF and end stage COPD. My mom looks young for her age, and she looks perfectly healthy, but she uses oxygen most of the time. However, she doesn't have to use it when she is at rest. Such as...in the car.

So there have been times that she has gotten out of her car, without her oxygen on, that she has gotten glares and dirty looks. She enjoys whipping out her oxygen with a flourish. It makes people feel like asses for assuming, and she enjoys that.

Initially, my mother declined her disability benefits, even though her doctor felt she was profoundly disabled. I think she needed to prove something to herself. Now, it has been about 5 years since her diagnosis, she is managing her disease well, and she isn't so frightened and uncertain.

BUT. She has realized that while she CAN work, (she has an office job) it takes A LOT out of her, mostly from the standpoint of just getting in and out of the building. It's quite a trek, even from the handicapped parking, and it's difficult for her. Even going to and from the bathroom or the breakroom (which she must to often due to her "water" pills) is a major undertaking with her lung capacity (And she has to drag an oxygen tank).

Psychologically, she is now ready to accept that she is disabled, but guess what? Because she has proven that she can work, they will no longer approve benefits.

Meanwhile BOTH my MIL and my FIL are collecting benefits and are perfectly able to do light work. (long story). It burns me up.

Sorry...didn't mean to make this about me!

Long story short (I know, too late) I don't doubt your disability for a second.

People are idiots.

18/8/07 12:34 PM  
Blogger Never That Easy said...

My very favorite response to "Well you don't look very handicapped"-type comments is --> "And you don't look incredibly stupid, but I guess there's not always truth in advertising, now is there?"

But I really like yours, too. :)

18/8/07 2:05 PM  
Blogger madamspud169 said...

My doctor took me off simvastatins because I was so worried about the article (link below) have you heard of it?
I'm sorry you have such a lot to deal with specially other people sticking their noses in good for you for saying something. Maybe she'll think twice in the future although I doubt it.


19/8/07 4:55 AM  
Anonymous medrecgal said...

Your pile of pills reminded me of my grandma, who was a lifelong cardiac patient. She didn't "look" like she would have needed that handicapped space, either, but not all disabilities are plainly obvious. (I could tell my own stories, too, about that kind of experience, but they're not cardiac in origin.) I would have told that nosy wench to STFU and mind her own business.

19/8/07 7:47 AM  
Blogger Carmi said...

How sad that this world is home to so many needling ninnies who insist on being complete dipsticks. I can't stand the dark ruach that possesses morons like this to sanctimoniously open up their mouths to complete strangers.

You deserve better.

Sending you good health vibes, my Mass-living friend.

20/8/07 3:07 PM  
Anonymous Anonymous said...

I'm a woman in her late twenties with a significant physical handicap, but unless you see me walking (with my cane and bad limp), you'd probably not guess that I had any sort of disability.

I try to use my handicap parking pass only when absolutely necessary (winter weather, crowded parking lots), but have been approached on more than one occasion by an indignant onlooker shouting "That's a handicapped space! You can't park there!" as I get out of my car. I just pull out my cane and limp off, ignoring them all the while.

23/8/07 10:34 AM  

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