You Know What Sucks?

I'm sorry, I just need to vent because it's been on my mind so much lately.

You know what sucks? Having a chronic condition. Of which I have four. Lymphedema, Rosacea, Arthritis and Asthma. S.E.X.Y.

You know what sucks? Having to use an inhaler once in a while because you can't breathe. You literally can not breathe...the simplest human function there is.

You know what sucks? When people think you are lazy because you want to take the bus or a cab. What they don't know is that you have 18 bandages wrapped up and down your legs and your shins feel like they are splitting apart.

You know what sucks? When people think you are fatter than you actually are but really it's just swelling.

You know what sucks? When you get that swelling under control for a couple days and everyone says "You've lost so much weight!" and you have...you have suddenly lost nearly 15 pounds of swelling in ten days and suddenly your bones are exposed when they are used to being padded so even knocking them into something lightly can kill.

You know what sucks? Not being allowed to get a cut on your leg. Not being allowed. That means no flip flops, no barefoot outside.

No heat. No hot tubs. No saunas. No heating pads. No hot beverages. Definitely no sunshine.

You know what sucks? When your doctor doesn't know enough about your disease to know that you SHOULD NOT have a certain surgery, which you then have and it puts you at a 90% risk of the disease spreading to your arm...so you are no longer allowed blood pressure or shots in your arm.

You know what sucks? Your new specialist smiling and clapping and saying "This is one of the rarest cases I've ever seen!"

You know what sucks? When people say, "But it could be so much worse."

You know what sucks? When you wake up in the middle of the night to the searing pain of your knee cracking because you stretched it out.

You know what sucks? Being a 29 year old in a 75 year olds body.

You know what sucks? Watching videos on Youtube of people with the same disease saying if it gets any worse...they just don't even know what they will do.

You know what really sucks? People staring.

You can't wear boots, sandals, open toed shoes or...anything. Shoe shopping is like a nightmare and always ends in tears.

You aren't supposed to shave. Or use scented lotion. Or paint your toenails. Or get pedicures. So you do shave, because you aren't going to not shave, but you shave knowing that if you cut yourself you might end up in the hospital.

You know what sucks? NO ONE, including your doctor and yourself really understanding this condition at all. What also sucks is the complete lack of interest or concern the medical community has for it. Insurance won't cover our medical supplies, which cost way into the thousands, because they are viewed as "cosmetic".

You know what sucks? When you hear, "There's not really anything more we can do" "This is a lifelong journey" or "It's something you'll just have to learn to live with."

You know what sucks? When you tried to ignore it for years and years and shoved yourself into shoes that didn't fit and pretended like it didn't exist...which made it move from stage one to stage two.

You know what sucks? When Maury Povich brings out people who have never taken care of their lymphedema and parades them around while the audience gasps. And then people think this is me, that this is what I have. It is not.

You know what sucks? Washing out your ripped up stockings in the sink every night because you just can't afford new ones.

You know what sucks? When you have your inhaler with you, you took some aleve for your knee, you are wearing your compression stockings and you have cleared up your whole face...you have done all the work and done everything right...and still...and still...

You know what sucks? When your eyes get all watery because your face is all flushed because you have rosacea...and the only treatment is $2000 and bad for your lymphedema so you just have to learn to live with it, but it kind of makes you panic which brings on your asthma so you sit down to relax but that hurts your newly arthritic knee.

I know, I'm being a whiny baby. I'm sorry. It just gets annoying. And I decided to take a more active role in taking care of everything this year so I've been reading a lot of books and visiting a lot of websites and stuff and it can get a little depressing. But the most depressing part is that it is so hard to find anything online about this and no one is doing anything about it. FINALLY I found a lymphedema community on facebook which has been cool. And there is lots of good info at lymphnet.org. But, it still kinda sucks.

Anyway, I just needed to vent. Thanks for listening.