Friday, January 18, 2013
Take just a moment to read this short blog/article. Really consider the implications of what the author says.
I've been using the same imagery of linking the flu to what it feels like to have Gastroparesis, for nearly 2 years. It knocks people off their feet for a moment while the consider the implications. When you have the flu do you feel like doing normal activities? Do you want to take out the garbage, vacuum, cook or even smell food, go to work, play with your kids, or even stand upright? Usually that's a resounding NO. I've had a pretty bad case of Gastroparesis since July 2010, but I've had mild symptoms of it since I was an infant - over 31 YEARS of not being able to eat like everyone else around me. I was yelled at as a kid for not finishing food, for not eating fast enough, or because a single taste of some foods made me sick to my stomach. It has gotten worse over time, but the last few years the condition has become downright dangerous. Even so, I am still berated and harassed by a few people because I don't eat like others. Some people refuse to believe there is anything wrong with me because I 'look fit and healthy'... because having 11 medical conditions that are invisible illnesses isn't enough to make them see and believe how impossible it is for me to even stand some days. Yet many times I have gone out of my way and even risked my safety for someone else.
The words you choose to say might have one meaning in your mind, but mean something entirely different to someone else. Be careful of what you choose to say, and if you don't know what to say then be willing to admit it. It is better to admit ignorance than to pretend to understand. I am so sick of people saying I look perfectly healthy when every part of my body is screaming in pain, I can barely eat, and I know that most of my conditions are incurable, untreatable, or have failed to respond to treatments. I am not healthy and if they really looked in my eyes for a moment they might realize how much those words just hurt me, but instead I feign positivity and acceptance of their ignorance because I don't want them to feel hurt. I deal with hurt every day of my life, so I can take a little more, right?
Take note of what people say to you when you feel sick, depressed, hurt, or let down. What makes you feel better and what makes you feel worse? What do you want to say in response when you appreciate or hate what they said? If you have a friend with a medical condition, take a moment to really think before you speak. Sometimes just giving someone a hug and saying you're there for whatever they need means more than any other pseudo-supportive comment you can come up with. And please do not try to commiserate with them, because support doesn't mean one-upping someone, it means allowing them a chance to explain their pain. If they need to talk about what's bothering them, don't say how you've felt the same before because (this) happened to you. If they understand the same, when you need the support they'll sit back and listen to you.
Thursday, January 03, 2013
I think this is incredible and awesome. As someone with a partially paralyzed digestive system, I spent part of 2012 underweight due to an inability to digest food and was put on IV nutrition to be able to gain back some of the weight I lost. When I was underweight I felt absolutely horrible; while most of it was from my other medical conditions, I had no energy from lack of food and the shape of my body was not much fun to look at.
There is more to beauty than being skinny from malnutrition. Being healthy is beautiful. Living a healthy life is far more important than being able to count bones through skin. Children and young adults should not be comparing themselves to an unrealistic standard to determine their worth.
Wednesday, December 26, 2012
Right now there's a trending topic on twitter: #In2013NoMore
Some of the responses are jokes (#In2013NoMore 2012). Others are totally not unique or thoughtful (#In2013NoMore BS/laziness/excuses/dealing with XXX/end of the world predictions). Most of these are really stupid and have no meaning beyond reading the last word. Still, it got me thinking. What do I want to put a stop to in 2013 that I can make happen?
#In2013NoMore letting others' negativity, hate, and insecurities dictate my goals and dreams. To never try is to guarantee failure.
That's what I wrote. But that's only a small part to what I want to be different next year. I don't want others' problems to determine how I feel about myself. I'm so done with people telling me what I can and can't do because of the fake rules they've created about what are the acceptable and unacceptable ways for a person to behave. So what if I enjoy a tv show someone else thinks is stupid or if I abhor what they choose to watch? If I know I'm unable to do something because of my disability no one has the right to tell me to 'suck it up' and 'you're not allowed to complain.' I choose to stand up for my rights to be treated with respect.
I also am making the choice that while I am a giving person who enjoys helping others when and how I can, I will stop selling my own fragile self-esteem to anyone who chooses to complain about everything while never doing anything to change what they don't like. Every person chooses how they act or react to the events in their lives; allowing others to dictate our emotions and our actions is selling ourselves to the loudest bidder. I will always emotionally support those who strive to emotionally support themselves. It's my choice that in 2013 I will let go of those who are using emotional blackmail to force me to give them the negative attention they desperately crave. I will fight the urge to feel that I am a bad person if I can't help someone to change their lives when they are so entrenched in their unhappiness that they refuse to move beyond it. I can't help someone who refuses to help him/herself.
I noticed recently that there are some people in my life who do everything they can to suck every bit of happiness from my life (several of them are family members). As I reflected on it more, I realized they are unable to feel joy because they only feel alive when they are miserable. By emotionally destroying me and pulling me back to their level, they feel content because there is no reason for them to move beyond their misery. Because my deep empathy causes me to take others' emotions into myself, then try to haul them out of the misery with me, I'm drowning. So I believe the next stage in my recovery from my life-long battle with depression is to stop trying to make others follow me out of the misery. It is not my fault they are there and it is not my job to make their problems my own in order to fix them. I am but a single person, thus I have but a single person to fix. I must be okay with that. I will still help and support others, but when I am expected to feel guilt over someone else's choices it will be the sign that it is time for me to move on.
Here's to 2013 and a better me.
Sparkfriends, finish the phrase for yourself: In 2013 no more...
Friday, December 21, 2012
I know it's been thrown around that today, 12/21/12 is the end of the world. It's doubtful. At most, I believe it's the start of an incredible change. What the change is, how it starts, and the exact moment it starts probably won't be known until the change has affected us and we look back to find where it started. But that doesn't mean you can't make today the day that you decide to change your life and the lives of those around you. Think about this:
What do you wish for? What changes can you make and what plans can you put into action to make those wishes come true?
What do you need? What can you do to meet your needs (not your wants)? If there is a significant barrier, who can you ask for help?
Who around you needs your help to get what they need? There are people everywhere in this world who need help. Have you opened your eyes and really looked around you to find someone that can be helped with a small - or large - gesture of goodwill?
How can you make the world a healthier and happier place? Even a small act can make a difference. Can you spare a moment, a dollar, or a word to support positive changes?
Is there a reason you haven't done something you want to or need to do? Examine the reason(s) and debunk them. Is there really any reason big enough to completely derail a hope for the future?
By searching within yourself you will find answers for so many of the questions you have. You are the #1 person affecting your life and the #1 person who can change EVERYTHING for you. You are the only person who chooses how you feel, how you act/react to outside forces, and whether you are making a positive or negative impact on those around you. No one can do this for you and no one can force you to be someone you're not. It is completely up to you to decide how you will project yourself to the world.
If you knew for certain fact that the world was ending today or that you alone would die today, what would you do differently? Would you treat others better or worse? Would you give up or would you try to fight it in any way possible? Would you beg forgiveness from everyone you've ever hurt or would you tell off every person who has ever hurt you? How people act in times of crisis often shows who they really are as a person. What if you made your choices about how to spend the last day on earth, but then the sun came up on a new day and you had to explain why you did what you did? Would others understand and respect your choices or would they feel betrayed and hurt? How would you react if your choices caused you to get every hope, wish, and dream you've ever had, or if your choices destroyed everything good you've ever had?
No one ever knows for certain how much time they have left before tragedy strikes. Any bad event can happen unexpectedly and no one knows what day is their last day to prove to the world who they are. We must make every day be a reflection of the person we want to be, because last words and last moments can last forever in those around us.
Make today a day of great change for you. Choose what kind of person you want to be and work to be that kind of person. I guarantee people will take note and choose for themselves if you will be a help or a hinderance to them being the person they want to be.
Forgive yesterday, hope for tomorrow, do better today - because every day is a chance to do a little better.
Monday, December 10, 2012
I used to love living in MN and didn't totally hate the snow. I've disliked it more and more as I've gotten sicker and less mobile. I already have a hard time walking and am a fall risk, so adding in snow and ice makes it really bad for me. I walk with a walker, but it's still not safe. Plus the cold makes the metal of the old walker (it's a hand-me-down from my grandma) hurt my hands, even through gloves (thanks chilblains!).
Well, today was the first big snow event in the Twin Cities metro. The official amount at the airport was a little over 10", but I think my area was pushing 11" at least. When I woke up at 3 pm (I didn't fall asleep until 7 am) the snow was so deep on my satellite dish and in the air that I couldn't get a signal. I opened up my patio door to my deck and spent about 15 minutes throwing snowballs at the dish to clean it off. I couldn't get outside my house safely and there's definitely no way I could get a broom or something to the dish to clean it off without seriously hurting myself. Just throwing snowballs was bad enough on me! I totally throw like a girl, so it took a few dozen snowballs to clean it off somewhat. Then it took another hour or two (I was watching something from the DVR so I don't know for sure) for the storm to clear enough to get signal. Well, my shoulder is hurting from throwing (thanks Ehlers Danlos) and my thighs are burning because I was basically doing squats to keep picking up more snow. I've had problems walking all day from it.
A little after that a guy came to shovel my walkway, which is the only way in and out of my house (without jumping off the deck that is). I poked my head out to ask him to make sure he clears enough space for my walker, and we talked for a few minutes. Whenever someone is working on my house I offer for them to let me know if they need anything, like water. He asked to use my bathroom, and I sent him downstairs so he didn't have to take off his boots (I don't go downstairs often, so it would have time to dry). I let him get back to his work then, being sure to thank him for taking the time to clean off my sidewalk well for me.
It sucks to be 31 and so sick I'm disabled. I'm so afraid to leave my house not only because of snow and ice, but because of the cold. I'm trying to enjoy the fact that I don't have to go to work every day in the snow, but I still have doctor appointments and errands I need to run. Oh how I wish I wasn't like this, or at least had someont to help take care of me!
Also, because of the cold (my thermosat is at 60* and I usually have about 8 layers on between clothes and blankets, because I have no money left, so I keep the heat down and use as little light as possible) and extreme stress, my stomach isn't working well again. I'm back to more liquids and less solid food because my abdomen is cramping and so painful when I eat solids. I'm drinking hot chocolate, gatorade (room temp), and ensure (room temp) to get calories, but it's not enough. I've gotta start figuring out how to get food into me again. If I lose more than 15 lbs then the doctors will put me on a feeding tube into my small intestine.
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