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Stacie Prada
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13 followers
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“I like to think of all of these professionals as consultants for the business of my health. I’m hiring them to help me be in the best health possible.…They are on my health care team, and I’m the boss. Given I manage people as much as possible as a team, it’s a very egalitarian conversation. That said, if there’s disagreement, I make the call. I’m the one who will need to put the effort in, and I’m the one who will live with the consequences.”
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“It’s occurred to me that if I have too long a span between belly laughs, I better find a way to do it. Not because it changes my situation, but because it feels like it changes things. A belly laugh is an immense boost. Letting loose, guffawing and snorting with laughter makes everything seem better. Laughter has been shown to relieve stress and help us tolerate pain better…. It doesn’t remove my fears or change my future, but it distracts me, bonds me to others, reminds me how fun life can be, and just makes me feel good.”
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"I tackle the challenges of my invisible MS symptoms from a lot of different angles. Lists help me immensely to eliminate wasted effort on tasks I need to do every time I go somewhere or do a specific activity. I streamline my self-care routines so that I’m able to do them when away from home. Simplifying what it takes to pack and leave my home vacant lessens the stress and effort it takes to get away. I pay attention to air travel restrictions, schedule travel to minimize disruption of healthy habits, and bring snacks that don’t sabotage my dietary preferences."
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"If my provider isn’t on board with a treatment but it’s not dangerous, I’ll make it clear it’s my decision whether or not to continue non-conventional treatments. It’s uncomfortable for me to go against my doctor’s recommendation, but standing firm and owning my treatment decisions is a good skill to cultivate. I’m the one who will live with the consequences, and my comfort level with the risk is ultimately the one that needs to prevail."
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My thoughts on building a positive support network, "Striving to follow these guidelines has improved my relationships immensely, and it's created a positive support network that I can count on when I need it. We support each other and don't keep score. Having them around makes every challenge easier to tackle and every loss more tolerable to accept. Plus, the effort I put into adding positive energy in the world helps me feel I have value and just plain feels good."
Creating the Support Network I Want
Creating the Support Network I Want
stacieprada.blogspot.com
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March is MS awareness month, and my topic for MSAA's blog MS Conversations was Relapse Management. I haven't had a relapse in over six years, so I shared how I approached them when I was having them and how confusing and scary it was.
"People with MS do not have complete control over whether or not they have a relapse. If someday there is a determined cause, cure and 100% effective management regimen, then that might be possible. Until then, the only ways I think relapses can be managed are to tackle them when they happen, reflect on them after they happen to try to find any patterns or contributors that you might be able to control, incorporate what helps, avoid what doesn't, and try to make the fear manageable when they do happen."
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Part 2 of my pharmaceutical medication denial and decision reversal: "This time, it worked out for me. There are others that either aren't successful in navigating the system or just can't prevail even though they're dogged in their efforts. If you don't have any health issues, please see yourself in me and in others that do. We don't cause our conditions, and we're not sick because we deserve it. It's the luck of the draw sometimes, and it can happen to anyone."
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"I think the key to why this matters is that having a chronic illness can make a person feel weak, powerless and like a victim. Feeling like that is depressing. Setting goals or doing things outside of our comfort zone creates a feeling of adventure and accomplishment. It adds to a sense of strength and empowerment. This is one area of life where I think one can help offset the other. It's hard to feel powerless when you're kicking butt doing something you've never done before."
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I wrote this tonight given my recent insurance denial on my medication and the State of the Union Address. I know it's long, but I hope you'll take the time to read this to understand how national politics, pharmaceutical companies and patents are affecting this patient that desperately relies on them. I'm one person. Others have it worse with more dire consequences, but my consequences will come if I can't get medication. We have many, many issues to address as a nation. I hope this one gets attention and some action.
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I had a rant in me that needed to get out. "Good rule of thumb – if someone tells you what you need to do before asking any questions, they don’t know. Keep learning, dealing with problems and becoming who you want to be, but don’t let an uninformed internet oracle decide what’s right for you."
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