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By Wendy Burnett
What do you want for the holidays? Do you want things to make your life easier, a cure for your particular illnesses, jewelry, books, electronics? No matter how much we share, our own particular wants and needs are very individual; and whatever you want is okay. Never let anyone tell you that what you want is wrong, or that you’re being selfish because you want something for yourself for a change.
I want so many things that it’s hard to know where to start, but here are a few of them, in no particular order:
- A job for hubby, and everyone else who is willing and able to work, that actually pays enough to live on. (Preferably one he actually likes, but one he can tolerate would work.)
- Family and friends that are actually supportive and understanding for all the chronic illness peeps that don’t have anyone in their life that “gets it.”
- Access to adequate pain relief for everyone who needs it.
- A doctor who will actually listen and believe what you say for everyone who fights with an invisible illness. (And who actually knows how to HELP, too.)
- Homes for the homeless; food for the hungry; hope for the hopeless; solace for the grief-stricken; and joy for everyone living a joyless, bleak existence.
- More love and less violence; more generosity and less greed; and most especially, more ethical behavior from those in power instead of the current grasping, self-serving dishonesty that is rampant in our government and corporations
Of course, there are a few things I’d like for myself, too . . .
- A subscription to a good-quality auto-responder so I could set up a newsletter for the site.
- The ability to get all the herbs, supplements and essential oils I’d like to experiment with to see if they’re actually helpful.
- Certification classes in herbalism and aromatherapy.
- Time. Uninterrupted time to write, to study and research, and to do the things I need to do to take care of myself so that I’m ABLE to do all the things I’d like to do.
- Strength. The strength to keep going, even when things are bad, when it feels like nothing will ever go right again or that the pain will never end.
Posts like this always remind me of how much I do have, of all the wonderful people in my life. They remind me that no matter how bad it feels sometimes, I have so much more than I ever did when I didn’t have to worry about being able to buy groceries or pay the bills; when all I had was money and things . . .
This post was written for the December 12, 2011 edition of the ChronicBabe Blog carnival.
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Are you confused by the whole healthcare reform hoopla, and what it will mean to you as a person with a chronic illness? Most of the articles I’ve read about it have been written from the perspective of healthy people, and that wasn’t very helpful for me. In addition, political biases and slanting to encourage readers to support one view or another made it even harder for me to figure out whether the reform package was something that would help me or hurt me.
I’m still not really sure what I think of it, other than that I DON’T think it’s going to last long enough to really make any difference. If the republicans get control of Congress, they’ll gut it (or repeal it,) using the money for more bailouts of rich companies; and it’s looking more and more like they’ll be back in power after the next election.
The only thing I’m really sure of in this whole thing is that the system we have now DOES NOT WORK. For-profit healthcare leaves the poor out in the cold, but the government-controlled systems in other countries don’t work any better, with ridiculously long wait times for “elective” surgery and referrals to specialists.
I think what is needed is some sort of “hybrid” system. We need controls on the insurance companies so that they can no longer “play God” by refusing necessary treatment or setting premiums so high that those with “pre-existing conditions” aren’t priced out of the market. (The current law appears to address that issue, but until those provisions are implemented, we have no way of knowing if it will be effective.)
We ALSO need controls on the government’s ability to determine what treatments we have access to, and their ability to interfere between doctors and patients by determining what level of treatment is acceptable. (Some jackass in congress (or on a committee;) has no idea what my pain levels are, or how they interfere with me being able to live my life, so why should they be able to decide how much medication is “enough” to treat that pain?)
Personally, I’m totally confused by the whole mess, so I’m going to “wait and see” if it actually does me any good.
The latest ChronicBabe carnival is up and ready to go . . . Lots of points of view and helpful information about dealing with doctors, etc. is available for your reading pleasure.
The next ChronicBabe carnival topic is “how do you deal with the medical establishment.” Since I lost my insurance two years ago, I hadn’t dealt with them at all until last month when I had to go to the emergency room, and ended up in the hospital for 5 days with no pain meds. I had my first visit with a rheumatologist since Oct. 2007 on Monday, and that experience wasn’t a whole lot better. Continue reading The Medical “Establishment” – Thanks; but No, I Don’t Think I Will »
The new ChronicBabe Blog Carnival theme is “who’s on your team” and I thought it would be the perfect time to let some very special people know how important they are to me, and how much I appreciate them (and hopefully, to help others figure out how to develop their own support team.)
Like so many of us, when I was diagnosed with a chronic illness, most of my family and friends didn’t “get it,” and even the ones who tried to be supportive ended up making me feel as though I was at fault for getting and staying sick. It’s taken me a lot of years to find people who either understand “incurable but not fatal,” or are willing to accept my experience without actually understanding it. It’s been a painful road, with many losses along the way, but I’ve finally managed to surround myself with people who love me for who I am and provide the emotional support I need to survive. Continue reading My Support Team: They weren’t Easy to Find, But They were Worth the Wait »
The new edition of the ChronicBabe Blog Carnival is up! There are tons of tips for new (and not so new) chronic babes from 15 chronic illness bloggers who have been living with chronic illnesses of various “flavors” for a WHILE, and have lots of experience and resources to share.
Check it out – and if you haven’t already, be sure to check out the previous carnivals as well . . . You never know when you’ll find exactly what you need to help you out.
Being diagnosed with a chronic illness turns your life upside-down, and it can take you some time to figure out how to deal with it. The sooner you start managing the illness, instead of allowing the illness to manage you; the sooner you’ll start finding ways to live a fulfilling life in spite of it. It can be totally overwhelming at first, but if you take one step at a time, you CAN do it.
The first, and most important, thing you can do is find out everything you possibly can about your illness. Continue reading New to the “Chronic Illness Game”?: How to Survive and Thrive Anyway »
Jenni, over at ChronicBabe, has Blog Carnival #6 up! The topic this week is “passion” and there are plenty of different perspectives covered.
“Passion is the energy that comes from bringing more of YOU into what you do.” –Curt Rosengren
When I saw the topic of this edition of the ChronicBabe Blog carnival, it threw me a bit. After all, passion requires energy, and energy tends to be in short supply when you have a chronic illness because dealing with all the crap that goes along with being sick drains you. As I thought about it, though, I realized that passion also PROVIDES energy, and the more passionate you are about something, the more energy that passion gives you.
Work is a good example of this idea – watch the people who love their work. They always have the energy they need to do what they love doing, even when they’re sick. The passion they feel for their work helps them find a way to do what they need to do, and even seems to help reduce the severity of their symptoms.
Contrast that with those who hate their jobs, who are just putting in the time they have to so that they can bring home that check, or keep that insurance, and survive just a bit longer. Continue reading Find Your Passion, Find Your LIFE . . . »
The new ChronicBabe Blog Carnival theme is favorite self-care tools and techniques, and will go live on Tuesday June 1.
I love this topic . . . self-care is a very important part of managing a chronic illness, and we all deserve to take good care of ourselves. I use a lot of non-medication methods to manage the symptoms of my multiple chronic illnesses (the short list is fibromyalgia and bipolar disorder, but if you’re really interested in the entire list, check my “Who Am I” page,) and I love sharing them with anyone they might help. I use a lot of aromatherapy and herbal teas for symptom control; and stress reduction techniques to minimize flares, anxiety, and bipolar cycling; so let’s get started. Continue reading You CAN Feel Better: Self-care Tips and Tricks for Fibromyalgia and Bipolar Disorder »