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Stephanie Buxhoeveden, RN, MSCN- Accepting help is not something I’m good at, but I excel at being stubborn! I am fortunate to have people in my life who would drop everything and lend me a hand, the only problem is that I never let them. I’m a fiercely independent spirit and it crushes me to make excuses, cancel plans, or ask for help. However, as you all know, when you have MS there are times when you need to put your health above your pride. MS has been a humbling experience for me. No matter how relentlessly I tried to deny its presence, or... Read more
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Multiple Sclerosis Association of America - MSAA- ‘Tis the season of giving! Did you know that you can give back to the MS community and help support MSAA just by doing some things that you’re probably already doing? Below are seven ways you can make a difference this holiday season and all throughout the year: Are you doing any holiday shopping online this year? Use Amazon Smile and a percentage of eligible purchases will be donated to MSAA. It’s easy to get started! Just go to smile.amazon.com, sign in to your Amazon account, and select the Multiple Sclerosis Association of America (MSAA) as your charity. Then shop... Read more
Kim Dolce- Sexuality goes hand in hand with identity. It is a partnership between sense stimuli and brain chemistry. We are inspired by love and intimacy, visual titillation, a word whispered low and for our ears only. But when we get very sick, lust disappears. This is only temporary if we have an acute illness such as the flu. But chronic illness leaves permanent disability in its wake, changing our bodies and what we have come to know about how they work. The more important question is: Do I feel sexy? When our lust is intact, we are feeling pretty much like ourselves.... Read more
Cathy Chester- A friend of mine sent me an article published by Saint Louis University about managing the holidays while living with MS. She thought it would be the perfect topic for our MS community, and she was right. The article, titled “Managing the Holiday Hustle with Multiple Sclerosis: SLU Experts Offers Eight Tips for You and Your Family” is both informative and valuable if you’re already feeling the anxiety of the upcoming holidays. The author focused on subjects such as managing expectations, communications, pacing yourself and managing travel, and then broke them down into YOU and YOUR FAMILY. Under these subtitles... Read more
Editorial Team- The holiday season is a busy time of year for most, however when you are living with a chronic condition, this time of year may be a bit more stressful. In a recent survey, 134 of our community members shared their thoughts on facing the holiday season with MS. Among those surveyed, an average of 4 holidays were typically celebrated this time of year, making it a time for numerous occasions to see friends and family. Nearly all of those who responded (94%) indicated they enjoy spending more time with their friends and family during the holiday season. Despite so many... Read more
Matt Allen G- “Knowledge is power”. That is true in all aspects of life (if you ask me) but especially when you have been diagnosed with a chronic disease like Multiple Sclerosis. “No one cares about your health as much as you do”. OK you could make a really good argument against that one, I know, but what my point is, is that you have a vested interest in being healthy. Being able to function and enjoy life positively helps you more than it helps anyone else. You may have a crappy doctor, I know I have gone through more than I can... Read more
Kim Dolce- December is upon us, and besides being the holiday season, ‘tis also the season to renew our prescriptions for disease-modifying therapies and reapply for co-pay assistance. I take Tecfidera, so during the month of December, I will contact Biogen’s patient support arm, MSActiveSource, to submit a new application for 2016 co-pay assistance along with my 2015 tax documents. Next I will contact my specialty pharmacy, OptumRx, and have them fax a prior authorization form and request for prescription renewal to my neurologist. This seems pretty straightforward, and it ought to be. However . . . There might be some extra... Read more
Donna Steigleder- No, I’m not talking about the “take no prisoners” rules but instead am referring to rules associated with social engagements. This is the holiday season and there are family gatherings and parties at work or at friend’s home that are cherished events and a great way to keep those social connections. However, participating can be a challenge and a heartbreak for those who are mobility challenged and their caregivers. If you are having an event and want to invite someone who is a caregiver or gets around in a wheelchair or uses other equipment for stability, please consider the following:... Read more
Lisa Emrich- Unchanged, grossly normal, unremarkable —– These are some of my favorite words that were included in my most recent MRI report. Very good news. It confirms that my MS has remained stable for another year. I have been very fortunate. In fact I haven’t had a BIG, steroids-required, symptoms-out-of-control relapse in four years. When I think back to the last one I realize what a difference four years and a minor change in treatment philosophy makes. Back in 2011, I had a lot of health issues going on and I was suffering from ‘doctor fatigue’ – that feeling you’ve had... Read more
Kim Dolce- It plays out like a psychological thriller. Innocent me, minding my own beeswax, going about the quiet business of living. Then comes November, the start of the holiday season. I’m in a form of denial, not anticipating, still operating as usual. But my birthday is November 25th, occurring on or around Thanksgiving. This is when the home intrusion begins. On November 23rd, my guy makes a surprise visit to celebrate my birthday. Fine, but I’d needed and planned to have a long block of alone time to do my work, which had fallen behind. And, I don’t sleep well with someone... Read more
Stephanie Buxhoeveden, RN, MSCN- I love living in a world where I can Google anything, and instantly have an answer at my fingertips. It especially comes in handy when you are living with a disease like MS, which loves to throw curve balls at you constantly. You can turn to the internet and find pages and pages of information about symptoms, medications, and even browse forums of other people living with MS trading information and experiences. Almost every informational MS site you visit has loads of information on the common symptoms like numbness and optic neuritis but what about the other lesser-known evils of... Read more
Matt Allen G- You know what really grinds my gears? Since I was diagnosed with Multiple Sclerosis I have been dealing with this and I know almost everyone with MS has had this experience. It probably does not even get to many people that much but for me? It really starts to boil my blood with frustration. I am talking about when you try to explain what you are feeling to someone who does not have MS and they tell you “oh, that is normal”. I am not sure why it gets to me so much, maybe I am really just frustrated with... Read more
Laura Kolaczkowski- The other day I was listening to XM Radio and had it on the Doctor Radio Channel – yes, that is my guilty pleasure. I tune in to in and listen and learn, a few moments at a time while I make short drives here and there. I often learn something new, but sometimes I am surprised at how much I already know. This particular day it was a cardiology radio show and they were talking about an email they had received with a question about a heart condition, but instead of spelling out all the words, the writer had used a... Read more
Steve Woodward- Recently I’ve gone back to read a book which my brother bought for me a while ago. The Consolations of Philosophy by Alain de Botton. Each chapter focuses on the works of a different philosopher – Socrates, Epicurus, Seneca, Montaigne, Schopenhauer and Nietzsche – and showing how they can be of practical use in certain aspects of our lives. So there are philosophical consolations for Unpopularity, Inadequacy, Difficulties, A Broken Heart, as well as the one which really struck me, Frustration which is all about Seneca. Seneca was a philosopher from Ancient Rome who took stoicism... Read more
Editorial Team- #GivingTuesday is a global campaign created to inspire generosity and to give back. In honor of #GivingTuesday, we want to give back to the multiple sclerosis community and are enlisting your help! We have complied a list of MS organizations from suggestions provided by our team of awesome MS experts. We’d like you to vote for which organization you would want the donation to go to. Our parent company, Health Union, will make a donation to the organization with the most community votes. To learn more about each organization, click on the links below: The MS HOPE Foundation Can Do... Read more
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I was diagnosed in 2007 with RRMS. I worked 12 hr days 5-6 days a week as a QA Supervisor in a food plant. The only doctor I made time for was my Neurologist. She told me over a year ago to stop working and go on disability, my job was to stressful, I never took lunch or breaks. In March 2015 I got up at 4 am to get ready for work. When I stepped out of bed I fell, right leg was completely numb,couldn’t walk. Called the doctor that morning, she took me out of work for good.... Read more
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