MedWorm provides a medical RSS filtering service. Over 6000 RSS medical sources are combined and output via different filters. This feed contains the latest medical blog items that have been tagged with 'everyday health'. Sat, 03 Sep 2011 02:15:16 +0100 http://www.medworm.com/index.php?rid=5107744&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fthe-ms-honeymoon%2F Diagnostics are better. Primary care doctors are more aware. Patients are seeking knowledge. The general population of people newly diagnosed with MS seems to be getting a bit younger. Truth be known, it’s likely that they are being diagnosed earlier in the course of multiple sclerosis, and that’s a good thing! Medications appear to be more effective early in the course of MS. That’s not just to say they seem to “work” better at keeping attacks down. The meds seem to slow the progression to the point where we may have some extra “good years” before (if) our MS decides to get progressive. Herein lay my thoughts for today: The MS Honeymoon. Many, if not most, of us can think back to some physical “oddities” which we experienced well prior to diagnosis. It wasn’t until a f... Life with MS blogs http://www.medworm.com/rss/comments.php?id=5107744 Mon, 08 Aug 2011 19:40:34 +0100 5107744 http://www.medworm.com/index.php?rid=5086380&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fstanding-up-with-multiple-sclerosis%2F It’s not uncommon for me to use alliterations and metaphor when I write about MS. Today, however, I write about the actual difficulties of “standing up” when you have multiple sclerosis. Difficulties with the vertical posture come in many colors, shades, and tones for those of us on different places on the MS rainbow. When I was first diagnosed, and trying to keep my jet-set, full-time employment, my boss in Germany told me of a dear friend of his with MS. Your man had apparently had MS for years and the only way you might notice anything is that he couldn’t stand for very long at a cocktail party. If that is the “infrared” end of the MS standing spectrum, “ultraviolet” would be those who cannot stand at all. I recognize that there are many in our Life With MS Blog communit... Life with MS blogs http://www.medworm.com/rss/comments.php?id=5086380 Mon, 01 Aug 2011 21:00:32 +0100 5086380 http://www.medworm.com/index.php?rid=5077888&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fnew-study-questions-ms-drug-value%2F This study will surely be a part of my decision-making process. We all know that MS meds work better for some than others, that some MS meds work for each of us while others may not, and we know that we really don’t know if a drug was working unless we stop and see our disease kick back into pre-therapy mode. This study, however, makes me believe that it’s time for the price of MS medications to come down — WAY DOWN — and I think that it’s time that we get some regulators involved. Many MS meds have been on the market for nearly 20 years now. Those first drugs have well been paid for and their investors handsomely rewarded. It’s time that we start realizing that. While I’m not diminishing the importance of multiple sclerosis disease-modifying drugs, it is not good for Manyone... Life with MS blogs http://www.medworm.com/rss/comments.php?id=5077888 Thu, 28 Jul 2011 16:28:12 +0100 5077888 http://www.medworm.com/index.php?rid=5028750&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fjuly-check-in-hows-your-ms-today%2F Time once again for our monthly open blog where we ask the question, “How’s your MS today?” After catching up (or trying) on all of your comments while I was away on holidays I’d venture to say that this may be a busy month for comments on this topic. I wrote some of those posts in advance and some during my trip. I didn’t have time to check in very often so I was surprised to see so many comments on many of the posts. As to how my MS is; I can’t really tell… I’m recovering from a sinus infection and we all know how that can muck with MS. In fact, I now remember that my diagnosing MRI showed a big, ol’ nasty sinus infection. The radiologist who read the films even mentioned it in his report: “major sinus infection in three cavities, multiple plaque lesions on brain and ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=5028750 Wed, 13 Jul 2011 19:16:47 +0100 5028750 http://www.medworm.com/index.php?rid=5028752&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fmultiple-sclerosis-and-the-question-of-disability-insurance%2F I’m not sure if the advancement of a post-holidays head cold into a sinus infection (and the associated MS issues related to a fever) had any part of my sensitivity to comments that circulated here on the Life With MS Blog and our Facebook Page but I thought that it might be time we discuss disability insurance and SSDI again. In this day and age of starkly divided political views many see “leaving work” because of MS as yet another way in which too many people are grasping at a government entitlement and suckling from the public teat. Others see SSDI as an insurance plan into which they have paid and, like any other insurance policy, when they need it they expect it to be there for them. There are many, many problems with the entire “disability” system (for lack of better termin... Life with MS blogs http://www.medworm.com/rss/comments.php?id=5028752 Mon, 11 Jul 2011 19:26:57 +0100 5028752 http://www.medworm.com/index.php?rid=5008473&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fmultiple-sclerosis-falls-secondary-damages%2F Supportive, light-weight shoes, a sturdy cane (“stick” in Ireland), cool ocean breezes and keen mindfulness allowed for some “hiking” on my recent holidays in Ireland. We kept to well worn paths and all, but it was nice to get out into nature even if it was only a few feet of the roads. Preparations for these jaunts included cool showers, a fistful of meds and the ever-watchful eye of Caryn as we trod step by spongy, peat supported step… And I’m proud to say that I was one of the few in our group who did not fall during our trekking! Chalk that one up to another lesson of living with MS. So many times, however, we know that we do fall and as I’ve commented before we may meet the canvas more often when we are feeling at the upper end of the MS spectrum. The injuries resulting ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=5008473 Fri, 08 Jul 2011 15:18:28 +0100 5008473 http://www.medworm.com/index.php?rid=5008472&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Flife-can-become-very-weird-living-with-chronic-pain%2F I know. You’re thinking life is weird already but let me say, if you’re newly diagnosed, “You ain’t seen nothin’ yet!” If you are one of us who live with connective tissue or rheumatoid disease you may see a certain set of weirdness. If you suffer from back pain or had a previous injury, you’re not excluded, either. It’s amazing what life can do to twist, shape and torment us. If our diseases or injuries don’t do enough in that department then there are always the medications to take up the slack and pile it on. Get your sense of humor ready and if you don’t have one, well, blessings upon you my friend because you’re going to need one. The other day I was fitted for a sacroiliac belt to aid my sacroiliac joints to stay put. All that was missing at the fitting was Scar... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=5008472 Thu, 07 Jul 2011 20:13:33 +0100 5008472 http://www.medworm.com/index.php?rid=4984585&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fhow-ms-treatments-and-our-expectations-have-changed%2F The old adage is that “Nothing is more constant than change” and there is little truer to someone living with MS. Symptoms change, doctor change, medications change…MS changes. A person living with MS 20 years ago, stranded on an island and newly returned to their home, wouldn’t even recognize the face of Multiple Sclerosis in the world today. Where once there were no meds (or maybe a very competitive lottery to get into a drug trial) there are now 6 approved therapies and scores in the final testing phases. Those once told to “go home and get your affairs in order” are now assisted in living a more fulfilling and meaningful life. Exercise — once the terror of MS docs — is now not only recommended, it is encouraged. Woman who were once counseled to really think about having... Life with MS blogs http://www.medworm.com/rss/comments.php?id=4984585 Wed, 29 Jun 2011 13:04:54 +0100 4984585 http://www.medworm.com/index.php?rid=4976059&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Friding-around-in-a-very-personal-journey-with-ms%2F A bus full of commuters passes you on a busy street. A car idles, waiting for a traffic light to change. The azure-blue, summer sky is unzipped by the contrail of a jumbo jet filled with hundreds of souls… and they all have a story. Have you ever been in an airplane on approach or departure; close enough to the ground to see the ant-like scene below as it gets on with the workaday world? Have you ever thought of the lives going on inside that plane far, far above your head? Have you ever felt yourself cut-off from the world as if you were in a personal space capsule catapulting through time, space and dimension and nobody gets it? Caryn and I have just experienced a very personal grief (and I trust our community to please leave it at that) during which we felt as if the world was going b... Life with MS blogs http://www.medworm.com/rss/comments.php?id=4976059 Mon, 27 Jun 2011 17:48:56 +0100 4976059 http://www.medworm.com/index.php?rid=4968705&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fwhere-do-you-find-true-grit%2F It’s often inspiring how life leads us along, licking our wounds which it also inflicted upon us; we love it, we hate it. These last few weeks I have been immersed in the past. I live in a home that is 120 years old and often wonder about those who lived here before we did. Did they love? Did they find joy and survival, together or individually? Did they have physical pain? Surely, they must have because they were without NSAIDs, biologics, acid inhibitors, a local drug store, or a supermarket. I often run across some little remnant of the past presence of one who lived here, like finding an oyster shell working its way out of the foundation outdoors or the aqua blue marine paint that dripped from the brush of an “ancient” mariner who used to live here, many years ago, still trailing... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=4968705 Fri, 24 Jun 2011 13:08:46 +0100 4968705 http://www.medworm.com/index.php?rid=4968706&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fprogressing-with-progressive-ms%2F Most of us with MS know terms like RRMS (relapsing remitting), SPMS (secondary progressive), and PPMS (primary progressive) when it comes to our disease. Less often heard variations are “chronic progressive” or “worsening progressive,” and I even heard someone refer to their MS as “acute, progressive chronic MS.” Not sure where he had heard that one. While we all want to find a “normal” group of people with MS to which we can identify and belong, it really isn’t all that important as to which group we fall (save for those of us whose doctors are sticklers for medications). What is important is that, as our disease may move from a relapsing-remitting phase – which is often medically described as “inflammatory disease” – to a stage of slow (or not), stea... Life with MS blogs http://www.medworm.com/rss/comments.php?id=4968706 Fri, 24 Jun 2011 13:04:58 +0100 4968706 http://www.medworm.com/index.php?rid=4960209&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fthe-little-things-we-can-still-do-for-ourselves%2F Like many of my generation and those who came before, I feel now like I may have spent too much time in my “former life” chasing the elusive brass ring. It wasn’t enough to be recognized wherever I went, professionally. Not enough to have the house in town and an apartment in the city. Even my dear Jaguar was a few years older than I would have liked. Now, please don’t get me wrong! I was very appreciative of the things I had attained, but they did not make me happy — Things seldom make us happy. Because of the way I have learned to live my life post-MS, I feel much more attuned with what happiness rarely is and I find it mostly on the inside. That being said, there are still a few little things that I do that make me very happy indeed. Last week, while in New York I treated myse... Life with MS blogs http://www.medworm.com/rss/comments.php?id=4960209 Wed, 22 Jun 2011 15:36:22 +0100 4960209 http://www.medworm.com/index.php?rid=4934587&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fhow-would-you-like-your-ms-society-to-use-social-media%2F I am off this morning to meetings in New York City with a newly formed group of advisors to the National MS Society on the topic of social media. Like many organizations, the NMSS is aware that online communities have changed the way that people with MS connect with one another and the whole-wide world around us. The event is to include several roundtable sessions with some of my fellow bloggers and online community leaders on the topic of multiple sclerosis. Lisa Emerich of Brass & Ivory and Carnival of MS Bloggers , Marc Stecker who many of you will know as the Wheelchair kamikaze and Ashley Ringstaff of MS World will all be in attendance for the day-long summit along with several national and chapter leaders from the Society. I am, of course, humbled to be in such lauded company and... Life with MS blogs http://www.medworm.com/rss/comments.php?id=4934587 Wed, 15 Jun 2011 21:08:54 +0100 4934587 http://www.medworm.com/index.php?rid=4934588&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fa-glass-of-wine-a-nibble-of-cheese-and-some-ms-art%2F One of the down sides to my increased schedule of travel schedule, writing deadlines and other obligations (oh, and how our favorite disease is handcuffing me in the heat and humidity) is that I don’t get to do all of the things that I would like to do. It’s something we all have to deal with on some level; right? Well I want to make sure that I share this event – which I’ll, unfortunately, have to miss due to the above listed set of cascading events – with all of you who are within driving distance of Seattle. But in doing so, I hope that it might be a little bit of a spark for those of you who are not. Next weekend, the 18th & 19th, the Multiple Sclerosis Center of Swedish Neuroscience Institute, in association with the Bellevue Arts Museum, is presenting their second annu... Life with MS blogs http://www.medworm.com/rss/comments.php?id=4934588 Mon, 13 Jun 2011 20:30:04 +0100 4934588 http://www.medworm.com/index.php?rid=4921623&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fa-life-with-chronic-pain-dont-panic%2F When we are struck with a life of chronic pain, we are terrified, feel forsaken and usually panic. Those who don’t panic are usually in denial and get around to panic later when the fear of the unknown sweeps over them. Today, as usual, I searched my heart and mind to find the helpful ideas which have and do help me everyday of my life. Please, let me list them for you in the hope that you will also find courage, calm and control in your life if you are also facing this monster each day. Gain Control. I know, you feel like your body has betrayed you and after all the great things you did for it, too. Stop asking yourself why this happened to you and look forward. Of course, it might help you to know if it’s genetic, for the sake of your children, but for now, you have to deal with eac... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=4921623 Fri, 10 Jun 2011 13:20:44 +0100 4921623 http://www.medworm.com/index.php?rid=4893703&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Feveryday-life-with-chronic-back-pain%2F As many of you who have been reading this blog for some time know, I live with sacroiliac joint pain and have for more than twenty years. Those particular joints are the two upon which you place your derriere, hold your two lower cheeks together and keep your legs from falling off. The pain from them often extends into the pubic area, the hips, and the lumbar spine and down the legs. Pain in these regions can have an affect on your bowel and bladder habits as well. Recently, the inflammation of those large joints has, for me, been worse than ever. I share this with you to explain why I have low back pain on the brain today, as well as on my backside. Since I have a brain that tickles easily, I have been remembering an event of many years ago when I was in nursing school. One of my nursing ... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=4893703 Thu, 02 Jun 2011 22:12:47 +0100 4893703 http://www.medworm.com/index.php?rid=4464607&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fis-life-with-chronic-pain-a-reality-or-a-cartoon%2F As most of you already know I have been having a terrible time with some funky new virus this year. I feel like a turtle that got tipped and can’t get upright again. That could explain why the room keeps spinning. Some spirit with a sense of humor keeps rocking my shell and occasionally gives it a spin. On Saturday, I went into urgent care. It was cold and slow. The people were very kind but I had to wear my gloves and jacket to keep from shaking my teeth out of my mouth while shivering. I had a chest X-ray, was given an antibiotic and left there being told I would eventually be okay. The diagnosis was viral with bronchitis. Since, like many of you, I already had a satchel full of problems, all things were complicated. We got out into the parking lot and I could hardly wait to get home a... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=4464607 Sat, 12 Feb 2011 00:46:51 +0100 4464607 http://www.medworm.com/index.php?rid=4460063&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fis-life-with-chronic-pain-a-reality-or-a-cartoon%2F As most of you already know I have been having a terrible time with some funky new virus this year. I feel like a turtle that got tipped and can’t get upright again. That could explain why the room keeps spinning. Some spirit with a sense of humor keeps rocking my shell and occasionally gives it a spin. On Saturday, I went into urgent care. It was cold and slow. The people were very kind but I had to wear my gloves and jacket to keep from shaking my teeth out of my mouth while shivering. I had a chest X-ray, was given an antibiotic and left there being told I would eventually be okay. The diagnosis was viral with bronchitis. Since, like many of you, I already had a satchel full of problems, all things were complicated. We got out into the parking lot and I could hardly wait to get home a... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=4460063 Thu, 10 Feb 2011 22:13:54 +0100 4460063 http://www.medworm.com/index.php?rid=4343245&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Flet-a-child-teach-you-about-a-life-of-chronic-pain%2F The children in our lives bring us many gifts throughout all seasons. They may be your children, your grandchildren, or a friend or neighbor’s child; all seem capable of performing this fete. They bring us the gift of laughter, the gift of acceptance and most of all, the gift of insight. Today, I would like to share with you some of the gifts the children in my life have taught me over the years, if I may? Anything is possible. Unless someone tells you otherwise, there is nothing you cannot accomplish. Just do it. You may not always succeed in doing something well, but you must try. Giving up is not an option. With all of life’s possibilities, why should it be? Santa, as well as Mary Poppins, has a bag that holds anything you want to be in it. Size and weight are not issues; but y... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=4343245 Thu, 13 Jan 2011 21:13:25 +0100 4343245 http://www.medworm.com/index.php?rid=4164556&cid=t_213491_109_f&fid=34750&url=http%3A%2F%2Fpsychcentral.com%2Fblog%2Farchives%2F2010%2F11%2F13%2Fwhat-not-to-say-to-a-depressed-person%2F I’m always on the lookout for articles that touch on ways to communicate to a friend or family member who is depressed because, well, it’s a delicate issue and one that deserves some education. I found this quiz on Everyday Health on what you should and should not say to a loved one struggling with depression. 1. Snap out of it! Your loved one hasn’t left the house in what seems like days. Should you tell him to pull himself up by his bootstraps and just snap out of it? Don’t say it. You may be tempted to tell someone who’s depressed to stop moping around and just shake it off. But depression is not something patients can turn on and off, and they’re not able to respond to such pleas. Instead, tell your loved one that you’re available to help them ... World of Psychology blogs http://www.medworm.com/rss/comments.php?id=4164556 Sat, 13 Nov 2010 21:16:54 +0100 4164556 http://www.medworm.com/index.php?rid=4098463&cid=t_213491_150_f&fid=35777&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2FPharmalot%2F%7E3%2FNHui_6K0h3g%2F Hired someone new and exciting? Promoted a rising star? Finally solved that hard-to-fill spot? Share the news with us and we’ll share with it others. That’s right. Send us your announcements and we’ll find a home for them. Don’t be shy. Everyone wants to know who is coming and going, especially with all the layoffs. Despite the downsizing, there is movement. Here are some of the latest changes. Recognize anyone? And here is something that’s become a regular feature. Send us a photo and we will spotlight a different person each week. This time around, we note that the Biomedical Research Alliance of New York hired Carmela Houston-Henry as business development director. Prior to joining BRANY, she was a senior manager for corporate clinical research at Bracco Diagnostics, and also ... Pharmalot blogs http://www.medworm.com/rss/comments.php?id=4098463 Fri, 22 Oct 2010 12:26:00 +0100 4098463 http://www.medworm.com/index.php?rid=3827248&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fgods-petrie-dish%2F I’m sure you feel like I do Sometimes when life’s too much; Pain happens once too often, Downhill without a clutch. I’m the little smear On the surface of God’s dish Growing in the medium With all that squish and swish. Is my life an experiment, Of some mad scientist? Or is this whole thing planned Like a novel with a twist? Problems upon problems Begin to weigh me down My body, mind, and spirit spent I’m certain I will drown. I can feel the water o’er me As I come up for air Struggling I resurface paddling, I’m driven by despair. I’ve learned what will support me I know what brings me down, But I don’t do either, Just lie there on the ground. I know I will get up, When I pull myself erect And after hunting high and low Will find my self-respect. I know it’s here somepl... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3827248 Thu, 05 Aug 2010 21:18:53 +0100 3827248 http://www.medworm.com/index.php?rid=3648685&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fpeople-say-the-stupidist-things-about-ms%2F While , “But you look so good…” may be intended as a compliment (or at least a deflector) coming from someone talking about your multiple sclerosis, there are other things that people say that is downright mean.  Whether or not it is intended, people can say some pretty hurtful things about (or actually TO) those of us living with MS. While I must admit that the most offensive thing anyone has ever said to me was along the line of, “You don’t really need that cane; do you?”; in a recent article in the National MS Society’s Momentum magazine I read evidence of some pretty awful stuff that people can say. Sure, we could chalk some of it up to ignorance, some comments up to fear and some a deflection device for their own “stuff”.  Some of it, however, is nothin... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3648685 Thu, 10 Jun 2010 14:26:29 +0100 3648685 http://www.medworm.com/index.php?rid=3641160&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fms-and-a-moment-of-silence%2F Multiple sclerosis has created a lot of “noise” in my life.  Either real or perceived or figurative; a lot goes on in the head of someone living with MS.  I think the sheer volume of “stuff” I think about has quadrupled since diagnosis. I mean, seriously, who else has to think about all of the “what if’s” and “then I would’s” and “how will I’s” and “am I able to’s” that go with just about every part of our lives as MS progresses?! Whether it’s sleepless nights during/post attack, as my brain tries to reroute signals or the constant self-talk to get me through-over-around-(sometimes) under obstacles (both real and imagined) it seems that I’ve never a quiet moment. Well, this weekend I got one… well, several. I a... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3641160 Mon, 07 Jun 2010 19:26:45 +0100 3641160 http://www.medworm.com/index.php?rid=3629763&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fnew-beginnings-in-your-heart-and-head%2F There is a great tendency to be discouraged when you have pain everyday. It’s like a slippery slide in our Oregon rain. If you just sit there on that slick slope, you’re going to slide down and probably land in the gooey mud. Sliding through this life is easy. You don’t really have to do anything in particular. Just embrace your depression, know life today and again tomorrow, will be terrible and there you have it; the slow descent into a life of hellish pain and suffering. It’s an interesting fact about suffering that it is not all in the physical realm. Suffering is highly contagious and can infect our hearts, out minds and our attitudes…big time. It spews and oozes over into our social lives, our family lives and our financial existence. All of us know what it is to wallow, we... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3629763 Thu, 03 Jun 2010 22:06:31 +0100 3629763 http://www.medworm.com/index.php?rid=3607677&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fhow-important-is-stuff-in-a-life-of-chronic-pain%2F Do you ever wonder what you’ll leave behind? With Memorial Day approaching and the recent loss of my sweet mother-in-law, I’ve had a lot of time this week to think about the debris we leave behind. We all know we leave a trail of possessions and financial resources when we die but we lay that trail while we are alive, don’t we?   We humans leave bits of our skin as we shed it every day, according to the vacuum cleaner salesmen. Most of us find our hair falling out; some more than others. We have tons of garbage rotting in dumps all over the country, some even out on barges in the ocean. We see discarded disposable diapers lying in parking lots and wonder at the term, disposable. It’s strange to realize many of these bits of debris and garbage will be around long after we are not.... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3607677 Thu, 27 May 2010 19:28:49 +0100 3607677 http://www.medworm.com/index.php?rid=3603716&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fsomething-you-can-do-for-world-ms-day%2F Today, May the 26th, 2010 has been proclaimed World MS Day by Multiple Sclerosis International Federation. This is the second of such observances. When I wrote about the day last year, I noted several of us who would have liked to do something in respect to the day, but didn’t know what, where or how. Today, not necessarily in direct connection with World MS Day, I have something we can all do (in a matter of 5 minutes) which might make us feel like we’ve added to the body of knowledge, as it were. Last week, I was forwarded a link to a short (like 5-question short) survey about MS and the Internet by the National MS Society. The results of which will be published in the fall edition of “Momentum”, the Society’s quarterly magazine. There is no personal information required in th... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3603716 Thu, 27 May 2010 02:34:12 +0100 3603716 http://www.medworm.com/index.php?rid=3595766&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fms-tremor-of-intent%2F Multiple sclerosis tremors can be couched in a few categories; Resting Tremor (more common in Parkinson’s than MS), Postural Tremor (sitting or standing, but not lying down), Nystagmus Tremor (those crazy eye jerking tremors). “Intention Tremor”, however, is the tremor symptom which occurs most commonly in people living with multiple sclerosis. This form of shaking happens when our brains try to tell a body part to move and the “static-y” signal gets mucked up on the way down the central nervous system.  I oft liken this to hearing every other word on a phone conversation or listening to AM radio as you drive past high-power electric lines. While I have resting tremor at the end of the day, intention tremor used to be one of my oddest symptoms. It only occurred in my left arm an... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3595766 Mon, 24 May 2010 18:43:37 +0100 3595766 http://www.medworm.com/index.php?rid=3588963&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Falternatives-scenes-in-a-life-of-chronic-pain%2F Quite often when you rent a movie, on the main menu they give you an opportunity to view deleted scenes, humorous flubs and alternative endings. I find it interesting and have often thought how wonderful it would be to be able to delete many of my past and present “scenes” in a life with chronic pain. I could fill a DVD with humorous misadventures and examples of screwing up and most certainly, it would be a good thing to write alternative adventures, whether they are beginnings or endings. So much of our daily life with chronic pain is far too boring to be an interesting movie. I can see it now in my mind’s eye. The main character is limping to the bathroom. She or he is struggling to get into a hot shower, camera pans to foggy windows. He grumbles into his clothes as life p... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3588963 Fri, 21 May 2010 21:03:33 +0100 3588963 http://www.medworm.com/index.php?rid=3588964&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fms-and-menopause%2F MS affects so many parts of our daily life. I wonder how much of our daily lives affect our multiple sclerosis… There is proof that diet and exercise can help improve symptoms of MS and a growing body of evidence that what we do may change, on at least some small level, the course of our actual disease. Even if it’s written off as “a healthy body recovers faster”, that’s at least something! Of course some things happen to our bodies, over which we have little to no control, which can have significant effect on our symptoms and disease. Infection/fever and pregnancy come to mind. My diagnosing MRI revealed a massive sinus infection; the fever from which made the flair so much worse (bad enough to make me go to the doctor). The issue of pregnancy and its confounding effect on a wo... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3588964 Fri, 21 May 2010 19:27:37 +0100 3588964 http://www.medworm.com/index.php?rid=3573825&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fthings-weve-learned-from-ms%2F Please do not get me wrong; I HATE multiple sclerosis!  The content of this posting does not, in ANY WAY, hint that I’m ok with having this disease.  Like every circumstance in my life, however, I believe it is my task to learn something from and advance myself because of the experience. That said, I have learned much from living with MS. This weekend friends from Europe called to let us know they were arriving (in hours).  We knew they would be coming sometime this month, but weren’t exactly sure (as they have been driving around the western states on holidays). A quick phone call from a national forest in California and we were in full planning mode! On Saturday, just hours before a welcoming party, I suffered a couple of back-to-back self-inflicted injuries which lay me down for ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3573825 Mon, 17 May 2010 19:23:36 +0100 3573825 http://www.medworm.com/index.php?rid=3566720&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fmay-i-ask-how%25e2%2580%2599s-your-ms-today%2F MS changes: Day-to-day, week-to-week, month-to-month. Every month, we try to take time in the first couple of weeks with the intent to allow for a bit of reflection and self-analysis about the current state or your Multiple Sclerosis. Feel free to leave a comment about your current successes and/or difficulties.  Ask questions of one another, or propose a topic for future blog discussions.  This monthly conversation has been going on for over 4 years now, and I don’t see a reason to stop now! As for my MS today? You may have noted a lack of posts this week until today.  I was working in Portland, OR from last Sunday and, quite frankly between the travel and the work I found my limits… about 100yds behind me! My next 6 weeks have me traveling a considerable amount (7 trips, 5 states ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3566720 Fri, 14 May 2010 17:50:04 +0100 3566720 http://www.medworm.com/index.php?rid=3564106&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Ffinding-your-limits-in-a-life-with-chronic-pain%2F There are few subjects we haven’t covered in the four years of this blog’s existence but there are certain themes which keep recurring as we wind our way through life with this “load” of chronic pain on our backs. We aren’t inanimate objects, groceries on a shelf going stale, produce in a bin rotting away with each hour; no, we’re human beings with lives, families and homes. We have chores, jobs, and other responsibilities to fulfill each day. Many of us have stopped working for remuneration but we still have work to do. We live, surrounded by a world that sheds, grows, blows dust, sheds skin, gets hungry, and often needs fixing. The constant issue which keeps arising in our lives is how much to do, how far to go and what is safe for us. How do you find your limits? How do you ... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3564106 Fri, 14 May 2010 01:50:00 +0100 3564106 http://www.medworm.com/index.php?rid=3545542&cid=t_213491_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fstem-cells-for-crohns-disease%2F Since I am now in the midst of a huge flare up, I have been researching new and upcoming therapies for Crohn’s and thought that I would share what I have found out. One of the most exciting areas of research right now is stem-cell research. There are a couple of different investigations with stem cells for Crohn’s disease going on right now that I found very interesting and hopeful. All of the stem cell therapies are still in the clinical trial phase and are not available to the public yet. The first area of research is studying the effects of injecting adult stem cells into the patient. I actually almost joined this clinical trial back in 2007, but decided to wait since I was getting better at that time and had just started my new job here in the states. I kind of wish that I did joi... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=3545542 Sat, 08 May 2010 03:46:42 +0100 3545542 http://www.medworm.com/index.php?rid=3542732&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fspring-cleaning-in-a-life-with-chronic-pain%2F     Those of us who live with chronic pain have looked forward to spring. Slowly, it’s seeping into our lives and we look forward to a respite from the cold, the snow, the wet and the wind. It’s been a long hard winter for so many among us and continues to cause problems today in many areas of the United States. We feel the weather changes in our bodies and we have to use energy we don’t have to cope with all of the surprises and clean-up of severe weather. Life is just more difficult when it’s dreary, cold and wet. There is, however, a down-side to spring’s arrival as fresh light reveals dust, dirt and swinging cobwebs. Somehow it’s easier in the darkness of winter to throw that magazine onto a pile of other magazines. They should be with their friends.  At our house we ... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3542732 Thu, 06 May 2010 20:36:17 +0100 3542732 http://www.medworm.com/index.php?rid=3542733&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fmultiple-sclerosis-home-modifications%2F MS, by definition, is a degenerative disease of the central nervous system.  That term “degenerative” has always bothered me but, it’s true.  For most of us, it keeps getting a little worse – taking (at least) a little bit more from us – as we get older. I mentioned (or “teased” as they say in the broadcast business) the idea of modifications we may need to make to our homes in my recent post about a fall and have moved forward with plans to install a second handrail on the steps to our home office. As we look to an eventual move back to Ireland, there are many considerations to keep in mind when buying a new home. Most of us won’t go as far (unless it’s mandatory) as moving out of our homes because of our MS.  Many of us, however, have considered the need to make ou... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3542733 Thu, 06 May 2010 19:33:23 +0100 3542733 http://www.medworm.com/index.php?rid=3526861&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fwhen-ms-meets-social-media%2F One thing that can surely be said about the World Wide Web; it’s, well world-wide, 24/7. It is now, as I write this post, 5:30 a.m. local time and I’ve been up for nigh 2 hours already.  I was using the wonderful world of the Internet to link into a social media meeting in Switzerland (not travel accepted, no “secret” information exchanged, no harm, no foul);  I said my piece and relayed your comments and half an hour later – I’m ready to go back to sleep! The topic of social media has, obviously, been on my mind for some time now and your comments have helped, but have also left me wondering about the medium… Technically, Life With MS comments are “screened”, as we try to weed out spam and personal attacks.  “Un-screened” social media is something like Facebook;... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3526861 Mon, 03 May 2010 15:05:49 +0100 3526861 http://www.medworm.com/index.php?rid=3519582&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fyour-opinion-matters-to-pharma-and-to-me%2F Our earlier post about ethics has really stirred up a conversation!  I knew I could count on our multiple sclerosis community for thoughtful debate on this as a specific topic.  You always come through! If you hadn’t noticed in my comment to Jane D I have decided that I will not be attending the group mentioned. The broader question, really, is what we want from the pharmaceutical companies (other than the obvious).  We’ve had a bit of a conversation about this before and your comments were, again, thoughtful.  I’d like to open that up again. For your information (if not disclosure) I am going to Skype into part of their discussion to give my/our opinions.  This way, not only will I not be accepting travel, I’m actually going to have to look presentable for a video conference ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3519582 Thu, 29 Apr 2010 18:32:59 +0100 3519582 http://www.medworm.com/index.php?rid=3515517&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fthe-art-of-living-with-ms%2F “Nature abhors a vacuum”, Rabelas said; and so do I! Multiple sclerosis has carved our big gaping chunks from our lives; be it our career, family, activity or some other joy-giving entity.  MS leaves holes; some large some now so.  How to fill them? That question was one of the first to enter my mind once the initial slide abated (read about 6 months post Dx).  It’s still one with which I struggle and suspect that many others do as well. For me, writing, gardening, and volunteer work with the National MS Society (along with the extra time everything seems to take with MS) have filled much of the time I used to spend working; but not all of it.  I’ve learned that many people with MS have turned to art (in many forms) to not only fill the void of available time but to help either... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3515517 Wed, 28 Apr 2010 19:13:50 +0100 3515517 http://www.medworm.com/index.php?rid=3508326&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fms-and-vertigo%2F A couple of short spells of dizziness this weekend brought back memories of my first discernable MS attack. Dizziness is a fairly common symptom of multiple sclerosis.  Many of us will feel the occasional light headed-ness, a slight bit of disorientation, and a sense of being off-balance when placing one foot in front of the other.  Vertigo, however, is a much more severe and significantly rarer (but far from unknown) symptom of MS.  This past weekend I experienced a bit of the former while walking through a parking lot.  Luckily, Caryn was at my side and the episodes passed after a couple of moments.  Being that we were walking to a live-aboard friend’s boat for an early evening supper made me leery of the evening’s prospects but everything turned out fine (better than that; we h... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3508326 Mon, 26 Apr 2010 20:58:11 +0100 3508326 http://www.medworm.com/index.php?rid=3499196&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fethics-big-pharma-and-ms%2F When it comes to living a life with Multiple Sclerosis, the Life With MS Blog community has made mine much more bearable.  This blog, however, is not about me.  As I stated over 4 years ago, in our first posting, “It’s all about you!” So today, I’d like to bring up an important question.  I need to know what you want from this blogger; it’s a bit of an ethical dilemma for me. As our community has grown, so has our visibility to the greater MS world.  It is not simply patients and their loved ones who visit this blog.  More and more, I am approached by the members of the broader MS community; service organizations, other bloggers, care providers, medicos, pharmaceutical companies, etc… In the past, it has been pretty easy to stay above the fray, as it were. I simply used wh... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3499196 Fri, 23 Apr 2010 15:18:07 +0100 3499196 http://www.medworm.com/index.php?rid=3499197&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fms-and-compassion%2F Do you ever feel like you maybe don’t give yourself enough credit for doing as much as you do…MS and all? I had a very busy work weekend (which ran into Tuesday).  I had every intention of waking up on Wednesday, banging out a blog for posting and getting on with a productive day. And now, it’s Thursday! I really have no idea where yesterday went. By the evening I was beating myself up pretty good over what didn’t get done; including (but FAR from limited to) that blog… But this morning, even though I don’t feel 100%, I think I’ll get a little more done.  Certainly, I’ll not get everything done I want.  In fact I hope to get everything done I need and will call that a successful day.  But, here I am writing this blog so things are at least a bit better than yesterday. P... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3499197 Thu, 22 Apr 2010 20:32:31 +0100 3499197 http://www.medworm.com/index.php?rid=3479789&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fis-it-ms%2F A couple of years ago, my local chapter of the National MS Society spearheaded a media campaign under the header “Why Here?” having to do with an increased prevalence of MS in America’s Pacific Northwest (approximately 1:500) Numerous billboards around the area were the impetus for many, MANY in depth conversations about MS in the community. This year the chapter has launched “Is It MS?” and while there are many conversations, the tone of the conversations has changed a bit. “Why Here?” seemed to open the door to questions and discussion about our disease without threatening.  When people found out about my multiple sclerosis, they would mention that they had heard that MS was a big issue here, etc. “Is It MS?”, however has started far few conversations from the general... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3479789 Fri, 16 Apr 2010 21:25:09 +0100 3479789 http://www.medworm.com/index.php?rid=3475946&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fthe-morning-in-my-life-with-chronic-pain%2F Before I open my eyes each morning, upon awakening, I feel pain.  Each day it is the same, that moment never changes because my body has not changed. The area of pain may move, and does, as I take inventory each morning. “Arms, legs…  still intact. Hips in pain as well as the backside. Neck, sore yet functional, etc.” When I am asleep I dream the dreams of the healthy which are shattered on awakening. Each day, I am disappointed. I must be a slow learner because I have not accepted the pitiful side of my fate by now; or perhaps I am just a believer in efforts, faith and possibilities. When I open my eyes, I usually have the front or the rear view of a furry grey Miniature Schnauzer who has cuddled closely to me with the morning chill, trying to horn in on my heating pad. Both ends... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3475946 Thu, 15 Apr 2010 19:46:19 +0100 3475946 http://www.medworm.com/index.php?rid=3471922&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fapril-check-how%25e2%2580%2599s-your-ms-today%2F   Every month, Life With MS opens up the conversation about Multiple Sclerosis to your thoughts. Usually, I try to post this blog the first Wednesday of the month, but last Wednesday was when I heard about the CCSVI webcast and wanted to get that information out to everyone straight away!  In fact, that webcast takes place today (4/14) at 9:00am PDT. I’ve submitted my question.  I hope you did as well! So, this is a little late this month, but; How is YOUR MS today? I’ll not cover up the fact that my MS has been hanging around this past fortnight a bit more predominantly than I’d like. Between the “post-Novantrone” anemia, a 2-hr live TV program, Walk MS in Seattle and my recent fall, I guess you could say that I’ve had my share of MS this month already! But enough about m... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3471922 Wed, 14 Apr 2010 18:26:54 +0100 3471922 http://www.medworm.com/index.php?rid=3463725&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fchronic-pain-blog-to-change%2F After much contemplation, I have decided to write a new blog only once a week instead of the two fresh entries I have been writing since August 2006. Those of you who read this blog frequently know I fight an uphill battle each day with my health which is the source of inspiration for this. I’m trying to decide what to share with all of you. The bad news is that I’m running out of steam with all the current problems I’m having and the blog has become more and more popular and demands more responses from me. I’m thrilled at the popularity of this blog and stubbornly try to answer each entry from all of you. I will continue to do so. As many of you know, there are many days your energy only goes so far and then, that’s it. I thought about shortening the blogs or making them less su... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3463725 Mon, 12 Apr 2010 22:25:51 +0100 3463725 http://www.medworm.com/index.php?rid=3463726&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fms-and-falling%2F We likely all studied Newton’s theory of Gravity in school; “F = GmM/r^2” is how the renowned scientist mapped out the force (F) of attraction between two objects (m, M) which draw them together.  I’ll have to remember that equation the next time I find myself in a crumpled heap at the bottom of the stairs… I’m sporting a wicked bruise on my left arm this week; a result of such a fall. A momentary shift in focus from placing my foot on the bottom step in preparation for a routine assent, as Sadie hurried past in an heretofore unannounced race, and I was inhaling the scent of recently-vacuumed carpet…up close! On my way down the up staircase, my forearm met the end of the handrail with the “F” of “m” meets “M” leaving a 7” deep muscled bruise which is now that u... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3463726 Mon, 12 Apr 2010 22:08:51 +0100 3463726 http://www.medworm.com/index.php?rid=3454051&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fis-it-ever-too-late-to-take-back-your-life%2F Roll up the cuffs on your pants; take off your shoes because it’s going to get deep in here. We’re going to ask ourselves questions like, “What is the meaning of life?” as well as “What does life mean to you?” and “Is it possible to be happy living a life with chronic pain?” What is the meaning of life to you? I know there are as many answers to that question as there are individuals asking it. To some of us it has changed over the years as we have changed. We age, we decline, we become more educated, we get sick, and we get rich or poor and our goals in life change. Nobody stays the same, ever. The glitch in the answers to life seems to come in at that change part. When we live with someone else and we change, they have to adapt, or adjust to that change or there can be su... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3454051 Thu, 08 Apr 2010 22:00:01 +0100 3454051 http://www.medworm.com/index.php?rid=3443859&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fadapting-to-a-life-of-chronic-pain%2F I may look the same as everyone else, but inside, I feel differently because I always have pain. It doesn’t come and go, like an errant neighbor; no, it stays, more like an inconsiderate relative who moved in without waiting for an invitation. When a cataclysmic event occurs in your life, like the advent of chronic pain, it changes you. Not only do you have the physical part of it to deal with, but because you still walk, hopefully, talk and breathe, you have to find a new and often inventive way to do everything. Life’s personal responsibilities remain, our family duties continue and the mere simple tasks of daily life call out to us; therefore you find new ways to do old, everyday jobs. Over the years on this blog I have discussed with all of you the many ways to ease life while at t... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3443859 Wed, 07 Apr 2010 00:33:52 +0100 3443859 http://www.medworm.com/index.php?rid=3440935&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fnew-webcasttelecast-ms-and-employment%2F Multiple Sclerosis is a disease which affects our lives in so many different ways; employment being one of them. Many of us have, for much of our adult lives, associated our identities with our careers.  Many of us derive great satisfaction and meaning from the work we do or from the independence our work (or at least our paycheck) affords. Many of us living with Multiple Sclerosis are struggling to say employed. Tomorrow (Tuesday, April 6th) night, I’ll be hosting a 2-hour live telecast/webcast entitled “Staying In The Employment Game”. The program will air live, with a studio audience at 8:00pm (PDT) on the stations of the University of Washington.  If you don’t live in the Seattle area, you can watch live via webcast on either the University website or Research Channel on the ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3440935 Mon, 05 Apr 2010 18:59:00 +0100 3440935 http://www.medworm.com/index.php?rid=3435144&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fwhen-ms-wrings-you-out%2F MS is a condition which, no matter how well we plan, takes us by surprise now and again.  Go to bed “fine” wake up with part of our body not responding to a call to action.  A simple battle with the circulating bug du jour and a fever sits you down like a crumpled boxer in his corner. Vertigo, which can make a turn of the head into a cyclone-spiral to the floor… MS can really wring one out…with little warning! I’m currently on a planned slide into anemia after my treatment on Monday.  I’ve been able to pretty much plan a lighter schedule (ok, who am I kidding?) knowing that I’d be far from 100%.  Still there are things which should get done by me.  It’s just taking a little extra effort. So, it got me to thinking about those times when our requirements wander beyond t... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3435144 Fri, 02 Apr 2010 18:18:02 +0100 3435144 http://www.medworm.com/index.php?rid=3429326&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fwhat-excellent-ms-care-looks-like%2F   ‘Hello, I’m Trevis and I’ll be your veins today!’ My parents’ (or was it my grandparents’?) generation is the one which coined the phrase, “We were poor; we just didn’t know it because everyone else was too…” Well, I had always thought I was getting excellent service/treatment at infusion centers… until I really had excellent service/treatment! On Monday I went in for my last dose of Novantrone, as I posted that day.  The overall experience I had was leaps and bounds beyond any infusion center I’ve ever encountered. I’ve always considered myself pretty well informed, as a patient.  In the first 5 minutes of conversation with my chemo nurse, I was told everything I already knew about the treatment. You may think that was a waste of time.  Thin... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3429326 Wed, 31 Mar 2010 19:51:53 +0100 3429326 http://www.medworm.com/index.php?rid=3420632&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fnovantrone-one-last-dose%2F Well, today ends an era for my MS treatment. Today I max out my lifetime allowable dosage of Novantrone. Much has changed since I began taking the drug. Most notable, my symptoms have changed dramatically for the better. Of course it should be noted that things had gotten pretty bad by the time we made the decision to use that drug. I was about a year and a half post Dx and had experienced 6 additional attacks. I was walker-dependant for most things outside of the house and fighting every indication that I should purchase a scooter. My disease had gotten aggressive so, my medical team and I decided we had to respond in kind; we got aggressive! At the time, Novantrone was the only drug available for a “breakthrough disease”, meaning MS that was not responding to one of the (at that time... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3420632 Tue, 30 Mar 2010 03:28:36 +0100 3420632 http://www.medworm.com/index.php?rid=3411196&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fms-care-partners%2F There is a lot of Politically Correct language out there in the world of multiple sclerosis and disabilities in general. One of the terms bantered about is “Care Partner”.  This replaces caregiver and other terms deemed by some to be demeaning and misunderstood.  I like “care partner” as it gives a sense that people are in the thing together and working in tandem. I’ve thought that Caryn will be a good care partner to me if and when my MS progresses “that far”.  Then, a couple of weeks ago, I had something of an epiphany.  She already is my care partner…even when I don’t think I need care! Those of us who live with this disease at any stage, be it in remission or in the midst of a full-on attack, rely on others in our everyday lives.  Caryn lives with my MS every si... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3411196 Fri, 26 Mar 2010 19:25:13 +0100 3411196 http://www.medworm.com/index.php?rid=3408531&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fkeeping-it-simple-in-a-life-of-chronic-pain%2F Today’s challenge is enough;  the next flight of stairs, that next load of laundry or the next weed that needs pulling is all you need to be concerned with, for now. Did you know you can wash one window at a time? Simple foods can sustain you as readily as complicated dishes; such as veggies, fresh fruit, yogurt and a can of soup. Frozen dinners are often healthy, tasty and convenient.  It’s easier, safer and wiser to fill your refrigerator with fresh food than to go out for fast food that is fraught with fat and needless calories. Keep food simple. It’s okay to sit or lie down and rest after any chore. It’s legal, wise and renewing. The “goof off” police will not show up at your door. Laughter and humor feel like sunshine on a cold, damp day. Laughter is allowed even when yo... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3408531 Thu, 25 Mar 2010 21:29:41 +0100 3408531 http://www.medworm.com/index.php?rid=3385512&cid=t_213491_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fa-funny-surprise-from-breast-cancer%2F There is one positive thing that I can honestly say came out of chemotherapy. It came up with my hairdresser today when she happened to notice that I have great eyebrows. I know it sounds funny, but hey, let me have this one thing. I have always had darker and thicker eyebrows than most women, but not quite as great as Brooke Shields. I was constantly plucking and shaping them and then breast cancer hit. Chemotherapy thinned them out quite a bit, but it couldn’t quite get rid of them. After my hair grew back, my eyebrows took on a new shape – and I couldn’t be happier. So today, my hair dresser commented on how great my eyebrows looked. When I told her I did not have to pluck or shape them ever, I knew she was impressed. We suffer so much through chemotherapy. Many of us struggle wit... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=3385512 Fri, 19 Mar 2010 21:05:55 +0100 3385512 http://www.medworm.com/index.php?rid=3385460&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fms-at-work-thrive-to-survive%2F Last week I was “workshopping” some of the topics for the upcoming “Staying in the Employment Game” MS TV program.  We sat, a group of about a dozen of us, talking about issues with staying employed after diagnosis. My full-time work experience ended abruptly within 4 months of Dx.  Most of the people in our group were still employed with the same employers (if not in the exact same jobs) as they were when they learned of their multiple sclerosis.  For this reason, I wanted to learn more about the nuts and bolts of their experiences. I was a little surprised at the universality of one of the sentiments I heard that night… “I’ve gone from thrive to survive,” said one man; EVERYONE chimed in with the same feeling.  The conversation that ensued about promotion, income, sta... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3385460 Fri, 19 Mar 2010 20:46:28 +0100 3385460 http://www.medworm.com/index.php?rid=3378617&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2F4-years-of-the-life-with-ms-blog%2F Sometimes, life with MS can be an annoyance.  Sometimes, life with MS can be depressing.  Sometimes, life with MS can be frightening.  Sometimes, life with MS can be uncertain.  Sometimes, life with MS can be exhausting… I hope, however, that you’ve found the Life With MS Blog to be, at least sometimes, a comfort! This week marks the 4th anniversary of the Life With MS blog and I quite frankly cannot believe it’s been that long!  Well over 600 postings, thousands of comments, tens of thousands of regular readers and I sometimes feel as if we’re just getting started! Many things have changed since that first posting in 2006; new website, new formats, new topics, new treatments… lots of new!  We’ve consistently seen new readers join our community. We’ve also lost track of... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3378617 Wed, 17 Mar 2010 19:12:00 +0100 3378617 http://www.medworm.com/index.php?rid=3374261&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fweakness-in-the-hands-and-the-price-of-dishes%2F I’m dropping things! Pre-diagnosis, back in my 20’s, I simply thought I was clumsy.  I’d trip on exposed tree roots on a hike.  I’d slip and fall down the stairs.  Rugs (and cats) became my introduction to the floor more than once and oh, the glassware I’ve broken… That was then; this is now and I’m still dropping things. Over the past couple of weeks, I’ve noticed that I’m sweeping up more broken glass and porcelain than I have in a while.  Wine glasses (empty, thank goodness, up to this point) seem to have an additional gravitational pull these days.  Plates (not all empty, unfortunately) have simply flung from my hand as I turned.  The cost of toothbrushes I’ve had to replace is starting to need its own line in my budget. The incidents are not coincidence.  I ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3374261 Tue, 16 Mar 2010 19:14:44 +0100 3374261 http://www.medworm.com/index.php?rid=3362491&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fms-and-social-media%2F The topic of MS and social media brings a joke to mind: Man I: Did you hear about the latest tech news? Man II: No. Man I: YouTube, Twitter and Facebook have announced a merger. Man II: Really; what are they going to call it? Man I: YouTwitFace. I was never a social media person; remember I didn’t even know what a blog was when I was asked to start this journey.  I must, however, admit that I’ve really enjoyed being able to catch up with long-lost pals through the medium. Many people who are limited in their access to the “outside world” due to MS, find such sites and their communities at least a diversion and at best a real lifesaver. I’ve noticed, especially when it comes to the “MS Underground”, that social media sites are full of people spouting opinions as facts and dec... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3362491 Fri, 12 Mar 2010 21:34:18 +0100 3362491 http://www.medworm.com/index.php?rid=3359128&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fcreativity-is-a-miraculous-treatment-in-a-life-of-chronic-pain%2F I know you want to be healthy and as well as possible, of course you do. We have covered so many chronic pain treatments over the last few years. We’ve discussed medication, physical therapy and exercise, as well as alternative treatments. We’ve discussed diet and nutrition and the influence on our lives by other people. I always love to chat with all of you about pet therapy and it’s powerful, loving influence on our lives and health. Today, I’d like to talk about another kind of therapy and that is the importance of creative therapy. So grab a lollipop, a Popsicle or a Tootsie pop and read along with me. Those of us who are around small children have the benefit of being reminded of the joys in creativity. When a small child sits down at the dining room table with a large pad and... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3359128 Thu, 11 Mar 2010 22:05:05 +0100 3359128 http://www.medworm.com/index.php?rid=3354467&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fnaturopathy-and-ms%2F Today, I am keeping one of my New Year’s Resolutions! I am packing myself off to see a new doctor for my MS (and for my whole health).  Today I’m off to see a Naturopath. For well over 2 years, I’ve had the very good intentions of adding Naturopathy to my medical regimen.  For just as long, I’ve found reasons not to make the appointments.  It’s not like it was difficult; there is a wonderful clinic not 5 miles from my house with NDs who have a keen interest in multiple sclerosis (in fact, the clinic chief is recommended by my MS neurologist!) I’m not using Naturopathy as an alternative to more standard “western medicine”.  Rather, I intend to augment and compliment my other MS treatments/procedures with the practice. I’m sure that the battery of lab work will expos... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3354467 Wed, 10 Mar 2010 23:45:45 +0100 3354467 http://www.medworm.com/index.php?rid=3350439&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fwisdom-from-the-ages-in-a-life-of-chronic-pain%2F If there’s one thing we need as we chug along with this life of pain everyday, it’s wisdom. Many of our founding fathers were full of profundity and wisdom which sure could come in handy in today’s fast-paced world. Thomas Jefferson said, “Take care of your change; dollars will take care of themselves.” Certainly, many of us have discovered the same truth applies to minutes. Take care of your minutes; your hours and yes days, will take care of themselves. If you have to scoot, push, pull or crawl toward that goal, surely, you and I can do it one minute at a time. My goodness, Jefferson and a handful of other independent thinkers founded a whole new country. They did it one act, one township and one battle at a time. So often we look down this road of chronic pain and it appea... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3350439 Tue, 09 Mar 2010 23:34:30 +0100 3350439 http://www.medworm.com/index.php?rid=3346595&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fms-awareness-week-are-you-ready%2F Even though World MS Day is still more than a month away (May 26th), this is MS Awareness Week in North America. It’s time to dust off the talking points, break out the MS buttons and get ready to answer questions. There will be television adverts, billboards and radio PSAs this week which could afford each of us to speak about MS this week. I know that here in Seattle, our chapter of the NMSS (which has just recently been expanded to support people living with MS in Alaska) has a new “Is It MS?” campaign which has been stirring up questions and conversations…and doctor’s appointments It’s not like each and every one of us has to give a press conference or stand on an overpass waving an “I Have MS; Ask Me!” banner. But, I think we owe it to ourselves and to one another to b... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3346595 Mon, 08 Mar 2010 21:16:24 +0100 3346595 http://www.medworm.com/index.php?rid=3338351&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fno-%25e2%2580%259cdeath-with-dignity%25e2%2580%259d-for-ms-patients%2F I am not a morbid person - a black sense of humor; that I’ll cop to – but a recent batch of comments on a previous post on the subject brought the topic back to my mind. I’ve been meaning to post something of a follow-up ever since my state passed a “Death With Dignity” Act, back in 2008. It was a hard-fought battle between the two sides with impassioned pleas from proponents and opponents alike.  In the end, the measure passed overwhelmingly. The thing is, the law was crafted with such tight restrictions as to make (some say “appropriately”) difficult to carry out.  In fact, a reading of the 10 pages of legalese which is the law makes it quite clear that a person in the final throws of MS would not be eligible for the relief intended by the law. A person, in Washin... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3338351 Fri, 05 Mar 2010 22:42:03 +0100 3338351 http://www.medworm.com/index.php?rid=3335484&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fa-life-of-chronic-pain-and-the-domino-effect%2F In the last twenty years, since I’ve been living with chronic pain, I’ve met very few individuals who have only one problem. Most of them, like me, have numerous ones. Some of them are permanent and some come and go like unwelcome guests. I often have to be careful because some of my friends feel they are in crisis when they have some current issue arise and their life is in a spin, trying to deal with it. The size of the problem is not the real issue; it’s the jarring effect it has on the life of the individual as it disrupts, worries and often, hurts. Since I’m an old hand at this suffering gig, I often have to watch my level of empathy and keep it in check. It’s not their fault I’m a veteran in the game and they’re not. Thank God they’re not. As I’ve mentioned so often... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3335484 Thu, 04 Mar 2010 22:00:44 +0100 3335484 http://www.medworm.com/index.php?rid=3327181&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fmarch-forth-and-tell-us-hows-your-ms-today%2F Tomorrow is the only day I know of which sounds like an order: “March Fourth!” So, we do…with MS, we March Forth! Every month we take a moment and assess our MS symptoms, treatments, coping mechanisms, triumphs and tribulations; our lives with MS. Today, have a check-in moment with yourself and answer the question; “How is your MS today?” My MS has been static the past several weeks.  I’m pretty glad as I have not been!  Maybe it’s because I’ve gotten used to the “stuff” MS has already taken away, but life with MS has been alright (relative) this past four weeks.  Anyway, I’ve had a lot going on (I’ve already traveled away from home 2 weeks on three trips this year…and it’s only the third month!) and I’m happy that I haven’t had any new stuff to deal with... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3327181 Wed, 03 Mar 2010 16:34:58 +0100 3327181 http://www.medworm.com/index.php?rid=3327250&cid=t_213491_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fbattling-breast-cancer-with-memories%2F Cancer is a family affair. One life may be affected but all lives are disrupted. When you talk to someone who had a mother or sister or wife or daughter that battled breast cancer, it is plain that they felt the pain of that diagnosis and the fear of loss. It is at those times a family needs to remember all the happy days they had. I think of all the happy days in my family’s life and am grateful that they outweigh the cancer days. Making memories becomes so important for those of us that survive cancer and realize how much those happy days we created before the diagnosis meant to us during the battle. I think this is what is fueling my need for family pictures all over the house. For the past three months I have been buying frames and photo books and even have one wall in the hallw... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=3327250 Wed, 03 Mar 2010 15:34:14 +0100 3327250 http://www.medworm.com/index.php?rid=3327180&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fa-life-with-chronic-pain-and-my-enemies%2F GRAVITY is always there, to trip us up, drag us down or rocket some object into our pathway. It is also an enemy to us as the pull of the earth draws all body parts downward. It’s truly amazing how quickly your face can hit the floor. PAIN of course, that’s a given with the title of this blog. Pain everyday pokes, prods, tugs, needles, cramps and generally befuddles, bewilders and baffles a normal existence. Pain is the giant wrench in the engine of life as it attempts to chug along life’s track. NEGATIVITY can rock your world, darken your day and cause the skies to open up. When you need every bit of positive fortitude within you to tackle a challenging life, this comes along to tie your hands, dim your wits and cause tears to stream down your face. It very soon can warp into it’s... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3327180 Tue, 02 Mar 2010 22:38:12 +0100 3327180 http://www.medworm.com/index.php?rid=3322519&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fhow-are-you-proactive-with-your-ms%2F Let me begin this posting with a disclaimer.  I am not an expert at living with multiple sclerosis.  I am a student of living with my MS. Last week we began an 8-week course of “Empowered Living for Couples”.  The program is offered by my local chapter of the National MS Society and taught (though she prefers “facilitated”) by my dear friend Maureen Manley. For the next eight weeks, a group of 7 couples will take 2-hour journeys of discovery and (hopefully) learn skills for living our lives more aware.  I suspect the concept may be a little touchy-feely for some, but I’m looking at it as; anything that may help us live our lives better, in the company of this uninvited guest, is worth a go. Part of our initial meeting divided us into two groups (the haves and the have nots) w... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3322519 Tue, 02 Mar 2010 00:18:10 +0100 3322519 http://www.medworm.com/index.php?rid=3311834&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Ftime%2F The clock is non-judgmental It doesn’t care at all No thought it gives to me As it stands within the hall. The gold watch on my wrist The alarm clock by the bed, What care they for misery Or what may lay ahead? They only serve one purpose And that’s to track my life, Moment by moment, clock ticking Time maps this life of strife. The good days and the bad They are the same in length As you and I struggle to balance Our pain against our strength. I try to stop the pendulum Save time for better days But the treadmill of time keeps moving It cares not if I’m ablaze. When I was very young, time dragged Christmas’s eons apart and I measured life by birthdays Not knowing what life would impart. Why does wisdom come so late? Why wasn’t I prepared? Is everyone caught by surprise? I didn�... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3311834 Thu, 25 Feb 2010 23:09:10 +0100 3311834 http://www.medworm.com/index.php?rid=3311835&cid=t_213491_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fsupport-the-ibd-research-and-awareness-act-for-crohn%25e2%2580%2599s-and-ulcerative-colitis%2F Last year, an important Act, The IBD Research and Awareness Act, was introduced to the House and Senate to expand research for Crohn’s Disease and Ulcerative Colitis.  The legislation would enhance activities at the Centers for Disease Control and Prevention (CDC) for Crohn’s and Ulcerative Colitis, as well as, expand biomedical research for IBD (Irritable Bowel Disease). You can help advocate for the passage of the IBD Research and Awareness Act with the help of the Crohn’s and Colitis Foundation of America (CCFA).  They have made this really great website where they make it easy for you to contact your legislators and ask them to cosponsor H.R. 2275 (House bill number) and S. 981 (Senate bill number). It is very easy to do.  Just click here. Then, scroll down to the ‘compose m... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=3311835 Thu, 25 Feb 2010 19:00:56 +0100 3311835 http://www.medworm.com/index.php?rid=3306982&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Flatest-ccsvi-results-raise-a-question%2F We’ve had a few postings here at Life with MS on the topic of CCSVI and they’ve all stirred a spirited debate. Well, as I was re-reading the latest research results something new stirred inside my brain. Unlike Dr Zamboni’s original research findings, wherein none of the “non-MS” subjects showed signs of CCSVI, this (more extensive and single blinded) study showed over a quarter of non-MS patients also living with CCSVI. While everyone is focusing on the 55%-62% (depending on which way you read the results) of people living with MS who show signs of CCSVI, I’d like to know more about the nearly 26% of “healthy” subjects who exhibit signs of something that was heretofore thought to be (nearly) exclusive of people living with multiple sclerosis. Don’t get me... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3306982 Wed, 24 Feb 2010 21:09:21 +0100 3306982 http://www.medworm.com/index.php?rid=3302493&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Freward-yourself-with-a-treat%2F My dogs have taught me over the years, the importance of the reward. There’s nothing quite as inspirational to a pooch as the question, “Want a bone?” The only other motivator that comes close is a platter of juicy steak, but that’s a bit messy to pop into your pocket. Sure, you smell good and have every dog in town following you, but oh, the grease stains. Our Jack Russell, Annie, is aging and often has a recalcitrant, doubtful attitude about climbing the stairs in our home. I can hear her little nails tapping on the wood floor at the foot of the steps and often go to the head of the stairs and utter that question to her, “Want a bone?” That simple question gives her the “oomph” she needs to ascend the dreaded stairs. It reminds me that many of us who have chronic pain al... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3302493 Tue, 23 Feb 2010 22:52:51 +0100 3302493 http://www.medworm.com/index.php?rid=3298550&cid=t_213491_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fbreast-cancer-and-the-power-of-napping%2F There is new information out of the University of California at Berkley that indicates that napping during the day boosts cognitive power. I like this! I am a napper. I don’t always get the opportunity for a short afternoon nap, but when I need it I take it. It might just be a few minutes before dinner or an evening class but it helps. When we go through chemotherapy or radiation one of the most distressing side effects is fatigue. Usually I worked in the morning and then went to Chemotherapy in the afternoon, returning to work the next day. This resulted in only a half day off from work. After a couple of months I would take the day after chemo off as I began to feel the cumulative effects of months of treatment. That would give me the whole day to rest. I then learned that if I cou... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=3298550 Mon, 22 Feb 2010 22:16:14 +0100 3298550 http://www.medworm.com/index.php?rid=3290967&cid=t_213491_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Ftaking-inspiration-from-other-breast-cancer-survivors%2F There is a lot of transition in my life right now. I am working on new projects and my husband is refocusing his career while my boys are working on major plans of their own. During times like this, not necessarily bad times, but when I am not the one being able to predict how we will all end up, I feel agitated and overwhelmed. I am not one to back away from risk or change, but I do fantasize about going in my office covering myself with a blanket and sitting under the desk until everything works out. Sounds crazy, but I’ve come a long way from when I used to imagine locking myself in the closet. I didn’t have these feelings when I was diagnosed with breast cancer. I really am a fighter. Show me injustice and I’ll speak up, pick on my friend and you pick on me. Take on o... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=3290967 Fri, 19 Feb 2010 20:22:33 +0100 3290967 http://www.medworm.com/index.php?rid=3290901&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fgoodbye-to-our-behind-the-scenes-ms-advocate%2F Why is it, do you suppose ,that I had an easier time writing a farewell blog post to a fictional American president with MS than I am writing this goodbye? For nearly four years this blog has been quietly (to most of you at least) nudged along in its existence to the place of recognition we currently hold.  Through diligent behind the scenes efforts one cannot search for an MS blog and not have our Life with MS pop up “above the fold” on the first page of a search engine’s results page. New readers join us every day and partake (and sometimes participate) in our lively conversation, advice and experience because of her tireless work. It may seem that I have been at the helm of this ship but I’ve had a little (one might say “pixy-like”) voice on my shoulder, whispering things l... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3290901 Fri, 19 Feb 2010 19:21:15 +0100 3290901 http://www.medworm.com/index.php?rid=3287889&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fdont-feed-the-chronic-pain-monsters%2F Please don’t feed the chronic pain monsters, it only encourages them. Never make them feel welcome or they will move in and make a complete mess of your life, your home and your mind. Please don’t feed them anger and bitterness, it only makes them thrive and feel empowered, and you don’t want that. The best way to deal with the monsters is to turn your back on them and get on with your life. It will frustrate them when they realize they aren’t winning, which is of course their goal. They will throw an ugly tantrum, they’ll scream, and rant and rave; just find a peaceful place of safety and they will eventually go away. Certainly they will come again, probably every day. These monsters are tenacious and stubborn. Once they dig in they hold on tightly, but if you firmly tell them, ... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3287889 Thu, 18 Feb 2010 20:42:22 +0100 3287889 http://www.medworm.com/index.php?rid=3283722&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fwe-need-information-not-hype-on-ccsvi%2F CCSVI, CCSVI, CCSVI.  For the past three months, the world of multiple sclerosis world has been turned on its ear with discussions of chronic cerebrospinal venous insufficiency (CCSVI). The concept broached by Italian medical doctor and professor, Dr. Paolo Zamboni, was a reexamination of several old theories (with significantly more sophisticated equipment) as to the relationship/correlation of tiny iron deposits in and around MS lesions. While Dr. Zamboni and his team of researchers presented academic papers showing a unique similarity (dubbed CCSVI) in 100 percent of MS patients they studied, these publications called for further investigation within the peer-review system.  Dr. Zamboni’s specialty is the vascular system and hence began experimental treatment of these patients with ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3283722 Wed, 17 Feb 2010 21:32:44 +0100 3283722 http://www.medworm.com/index.php?rid=3283721&cid=t_213491_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fbreakfast-with-crohns-disease%2F I think that I have mentioned before that I have been experimenting with my diet for the last year in an effort to improve my Crohn’s symptoms.  I have eliminated all dairy products and now use only Rice milk because it causes the least amount of trouble and tastes good.  I am also limiting the amount of gluten that I eat.  I still eat some items that have a little bit of gluten, but have for the most part deleted that out of my diet too.  I also don’t eat a lot of fiber because it seems to make matters worse.  Once you get rid of dairy, gluten and fiber, there are not a lot of choices left for breakfast. For the last year, I have been eating Trix for breakfast.  I recently discovered Berry Berry Kix and have switched to that instead because it has a lot less sugar.  I don�... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=3283721 Wed, 17 Feb 2010 19:26:52 +0100 3283721 http://www.medworm.com/index.php?rid=3280093&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fbeware-of-the-legal-drug-pushers-theyre-out-there%2F Occasionally, in my experience as a nurse I have run into doctors who are very, shall we say, “loose” with the prescription pad. I don’t know why or what drives an educated physician who has practiced for a short time or long to decide to take the road of least resistance; but some do. You have to wonder why they would risk their professional trust, but occasionally some do. I’m sure there are a myriad of reasons but that’s not for me to say. Part of the problem is the complete subjective nature of pain. When a patient enters a doctor’s office and states they have pain, it often is not as simple as it sounds. Sometimes it is a legitimate complaint, sometimes it is not. There are many ways this can be expressed to the doctor during an office call. I would presume there are as ma... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3280093 Tue, 16 Feb 2010 22:26:57 +0100 3280093 http://www.medworm.com/index.php?rid=3280094&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fwhat-do-you-think-about-your-ms-society%2F As many of you are aware, I am an ambassador for my local chapter of the National MS Society (the US organization). There are “MS Societies” all over the world and, even here in America, each chapter runs things a little differently. Of course I know that not everyone has the same relationship with their chapter of the society.  I also have come to the understanding that some are vehemently opposed to these organizations. As I reviewed comments on the web about CCSVI I was taken aback to read that some of you were even calling for “war” against organizations (NMSS being one) who were conspiring to “keep us sick.” I do not think that this is a pervasive attitude but I thought it was time to check in on this topic. I’m not a member who thinks these societies are above reproach... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3280094 Tue, 16 Feb 2010 22:06:12 +0100 3280094 http://www.medworm.com/index.php?rid=3269852&cid=t_213491_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Ftoo-quiet-on-the-breast-cancer-front%2F I have been in the breast cancer business for six and a half years. I call it “the business” because of how it affects my life, not because of the science or medicine. In all that time I have held to the hope of a cure for breast cancer. Not a treatment, not just a drug to eliminate risk; a real cure. In the past four years I have read and written about research studies and findings and breakthroughs. I have even blogged about British scientists that said there would be a cure in two years – that was in 2009. Things are very quiet right now about breast cancer and the quiet is deafening. We are in a war. The war against cancer. Remember, Nixon declared war on cancer and no one to my knowledge has declared a truce. When you are in a war you need to know what is happening on the front ... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=3269852 Fri, 12 Feb 2010 19:38:40 +0100 3269852 http://www.medworm.com/index.php?rid=3262760&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fstaying-employed-with-multiple-sclerosis%2F A topic which seems to thread itself into the tapestry of nearly all of our conversations at our Life with MS blog is employment. In these economic times, finding and/or keeping a job is difficult for “typical” people.  For we of the compromised myelin, the idea of finding new employment is daunting, while the thought of losing our jobs (and oft, thus our health insurance) is downright frightening! There are so many questions we have about MS and employment: Who do we tell and when?  How much do we disclose?  What are reasonable accommodations to request?  What does discrimination look like?  When do we say when? There is no shortage of questions…the problem is: Who do we ask? That one, I can answer! I am in the process of writing a two-hour television program/webcast which I’... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3262760 Wed, 10 Feb 2010 23:12:11 +0100 3262760 http://www.medworm.com/index.php?rid=3262758&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fis-your-dna-your-destiny-in-a-life-with-chronic-pain%2F For many of us who have daily pain due to disease, we are very familiar with the role genetics play in our lives. Do we have to allow fear to enter our lives and our futures if we had close relatives, such as mothers or fathers, who suffered similar diseases? Most of us have been taught in college that your DNA is more or less set in bedrock and determines your future. I have a relative who has been obsessed for many years in finding health information on all our relatives, living and dead. At a family gathering she corners a relative or two and questions them about their health in minute detail.  I believe she does this out of sincere concern for the future health of her children and grandchildren but also out of fear for herself. Sadly, I often sense a feeling of hopelessness in her man... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3262758 Wed, 10 Feb 2010 22:10:55 +0100 3262758 http://www.medworm.com/index.php?rid=3262847&cid=t_213491_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fwhy-am-i-keeping-this-wig-after-i-survived-cancer%2F Like a lot of women I know I have fat pants in my closet. You know, the ones you kept from when you were at your heaviest so you can remind yourself how much weight you lost. They are usually one or two sizes bigger than you are now. Only some of us keep them because every now and then our weight creeps back up and we actually need a pair of bigger pants. We refuse to pay for fat clothes because we are convinced the weight will come off again. Some of us never even tell anyone but sisters and close girlfriends about our fat pants. Certainly my husband doesn’t know. When he comes with me to doctor’s offices I don’t even let my husband see the nurse weigh me or check my height; I don’t want to ruin his image of me as tall and thin, which isn’t easy to accomplish... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=3262847 Wed, 10 Feb 2010 21:29:19 +0100 3262847 http://www.medworm.com/index.php?rid=3254586&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fnew-information-from-the-fda-on-tysabri%2F As if progressive multifocal leukoencephalopathy (PML) wasn’t a big enough word to get out of our mouths and a big enough concept around which to get our brains…now there’s immune reconstitution inflammatory syndrome (IRIS)! This morning, the US Food and Drug Administration (FDA) has posted notice to the neurologic community (and thus they believe to patients) that the risk of developing PML increases with the number of doses one receives.  In the same MedWatch bulletin the FDA mentions another adverse event which is, “characterized by a severe inflammatory response” and can create serious issues for people even after return of the immune system to normal function. As of last week, the number of confirmed cases of PML for patients using Tysabri as their MS disease modifying ther... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3254586 Mon, 08 Feb 2010 21:42:05 +0100 3254586 http://www.medworm.com/index.php?rid=3243920&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fsize-doesnt-matter-in-a-life-with-chronic-pain%2F I’m constantly amazed at the power of the human spirit. I’ve met so many wonderful people in my nursing career and on this blog. The degree, the size or the intensity of the pain is not nearly as important as the size of the courage that is called on to meet it. When you think about life it is sometimes the little things that get you down; the splinter in a finger, the blister on a heel or the flea on the dog. If you’re in the right frame of mind, little things can “do you in” as much as the larger incidents. We all have learned the power of the insistent “little things” as they persist in nagging and niggling at our self-control. How many times can you be stuck by the tiniest pin before you react? How many red, raw areas beneath surgical tape does it take to make you miserab... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3243920 Thu, 04 Feb 2010 22:12:42 +0100 3243920 http://www.medworm.com/index.php?rid=3235973&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fchoices-you-can-make-in-a-life-of-chronic-pain%2F Either I accept my limitations and challenge them Or I use them as an excuse to lose my life, without putting up a fight. Either I lie here and feel the full weight of my self-pity Or I rise up and do just one thing that is productive. Either I sit here during this commercial Or I arise off my seat and perform one quick chore. I either water that pot of African violets Or I watch them wither and die. I either walk down the stairs to let the dog out to pee Or face the consequences with paper towels in hand. I either snatch a small fragment of time to be productive Or I achieve nothing, willingly and without guilt. What’s with all this guilt, anyway? Either I consider the act of resting to be healing and do it without guilt Or consider it wasteful and of little importance. I’m the judge ... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3235973 Tue, 02 Feb 2010 22:12:53 +0100 3235973 http://www.medworm.com/index.php?rid=3231679&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fweighing-in-on-ccsvi-and-the-liberation-treatment%2F Before I launch into this topic for a second (and more informed) time, let me remind us all that just because I write this blog, it does not mean I have all the answers…not even a plurality of them, really. Earlier in the month we posted my preliminary thoughts on the subject of Dr. Paulo Zamboni’s research into chronic cerebrospinal venous insufficiency (CCSVI) and what he calls the Liberation Treatment.  At that time, I stated a skepticism which I felt healthy but others equated to some form of conspiracy, in which I was a player. I am not. After reading the published papers of Dr. Zamboni, et al, I could sum up my thoughts in just four words: “I don’t get it.” I don’t get it, and that’s why I’m excited to know that there is further research into the premise. While the t... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3231679 Mon, 01 Feb 2010 22:59:33 +0100 3231679 http://www.medworm.com/index.php?rid=3220648&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fdo-we-ever-get-too-old-or-ill-for-dignity%2F “A rose by any other name would smell as sweet.” It’s an old quote, and often used but do you think it’s true? Yesterday we received a brief update on Lolly, my husband’s Mom. As many of you know, she is quite elderly and receiving help at home in an effort to allow her to stay in her own comfortable environ with her beloved pets. Her case manager sends us updates from time to time and in each one she refers to Lolly as “Mother” or “Mom.” I confess, this affectation really bothers me. As far as I know Lolly only has one living child and I’m married to him. It reminds me of an incident, many years ago, when my family took my Dad out to dinner for his birthday. We were all stretched out along a large table at our favorite Italian restaurant, classic red and white checked ... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3220648 Fri, 29 Jan 2010 03:13:50 +0100 3220648 http://www.medworm.com/index.php?rid=3216802&cid=t_213491_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fwhat-did-you-learn-from-breast-cancer%2F I had to stand in a long line to pay for my groceries this weekend. Once I finished reading all the covers of the gossip magazines which updated me on the important stuff in the world, I decided to entertain myself by making a mental list of all the things that I learned from having breast cancer. I thought I would share it with you. Breast cancer taught me: That it’s not what you have but who you are that matters. That healthy people get cancer. That good people get cancer. That if life was fair no one would get cancer. That you need to be grateful for the good times. That a real friend is one who calls just to chat when you have cancer. That one great sister is better than twenty good doctors. That there is always something to smile about. That people will tell you your wig looks g... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=3216802 Wed, 27 Jan 2010 20:41:52 +0100 3216802 http://www.medworm.com/index.php?rid=3212459&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fbring-it-on-life-and-ill-just-write-a-blog-about-it%2F Our children and grandchildren have a lot more literature than we did while growing up. We had all of those scary fairy tales about witches burning children, babies rocking out of trees with their cradles falling and wolves with drooling jowls dressing up like Grandma. I also remember one trouble making little guy called Chicken Little who came around in a near panic exclaiming, “The sky is falling. The sky is falling.” Well, Mr. Little, I have news for you. The figurative sky fell and we survived. I’m not sure if you thought it was just going to fall on you or if it was going to fall on everyone but voila, here we are with dust and debris all over the tops of our heads yet we’re still alive. We’re fortunate in so many ways. We’ve had a painful reminder in Haiti of thousands of... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3212459 Tue, 26 Jan 2010 22:53:46 +0100 3212459 http://www.medworm.com/index.php?rid=3200554&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fmultiple-sclerosis-and-headaches%2F I’ve read your comments enough times to realize that we’re likely over due for a discussion about headaches, particularly migraine headaches and multiple sclerosis. Many have made statements, in comments left on other general topics, of experiencing migraine headaches along with their other MS symptoms.  Some state that they’ve experienced these most of their lives while others have only gotten these monster headaches after they experienced MS symptoms or were diagnosed. The topic of migraine is a difficult one for medical science to explain in general.  Terms such as “cluster headaches,” “sick-headaches,” “ocular migraine” and “vascular headaches” are bantered about the medical community within a cloud of certain mystery. Even the National MS Society states that �... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3200554 Fri, 22 Jan 2010 22:19:35 +0100 3200554 http://www.medworm.com/index.php?rid=3200629&cid=t_213491_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fbuying-shoes-to-get-through-chemo%2F I have decided that I need a pair of red patent leather high heel pumps with a platform. I saw them somewhere a couple of weeks ago and they keep creeping into my thoughts. I have a real weakness for shoes. This doesn’t make me unique as a woman, shoes have a real appeal for most of us. These shoes are pretty sensational though, they are shiny and the perfect shade of tomato red and have at least a four inch heel. I picture them with a skinny pair of jeans (I was envisioning when I was skinnier). Truthfully I didn’t buy them because I sensed they would end up with the rest of my collection of shoes, many of which are still new and in the box. OK, I confess, I am obsessed with shoes and have a very weird relationship with them. They make me happy! Before I had the second surgery... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=3200629 Fri, 22 Jan 2010 21:02:09 +0100 3200629 http://www.medworm.com/index.php?rid=3197793&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fwho-is-your-mama-in-a-life-of-chronic-pain%2F When I was a child of eleven years of age, I had to go to bed for a year due to rheumatic fever. I was never a particularly healthy kid and had strep throat more times than I can remember, before and after that time. Naturally, it worried my parents and my mother, who had trouble expressing her feelings, did so by being very protective of me. My father was an adorable and loving man who wept when I was diagnosed and over the years, each time I became ill, he brought me milkshakes, usually strawberry, and of course, the latest comic books. As I recall my favorites were always the Archie comics and another character named Lulu. Even then I decided you could only watch so much TV. The thing I hated the most, besides being cut off from my friends at school and church, was this most miserable l... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3197793 Thu, 21 Jan 2010 21:48:00 +0100 3197793 http://www.medworm.com/index.php?rid=3189288&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Freally-weird-ms-symptoms%2F If multiple sclerosis symptoms are nothing else, especially to the newly diagnosed, they are weird!  Sure, symptoms can be frightening, challenging, difficult and even debilitating… but how many times have I caught myself saying, “Hmmmm, that’s weird!” Often we are told, “That’s doesn’t sound like MS,” or something of the kind, by our medical professionals only to find out (oft, via the pages of this blog) that we are not alone in our experience of something not in the medical text books.  It is one of the aspects of the Life with MS blog of which I am most proud! I have a real doozie to share, with a discussion of MS symptoms from the X-Files. The middle of last week, I developed a cold.  You know that feeling when you wake, somewhere between the back of your nose and t... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3189288 Wed, 20 Jan 2010 17:14:22 +0100 3189288 http://www.medworm.com/index.php?rid=3178899&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fdo-you-have-any-triggers-for-an-ms-attack%2F Over the years, we’ve come to understand that medical science is a ways behind those of us living with multiple sclerosis when it comes to the experience of our disease.  The biggest of these lags comes to mind in the form of multiple sclerosis pain.  Most of us can remember a day when leading minds didn’t believe that pain could be a symptom of a disease which also caused numbness. Now, of course, most scientists agree with what we have known all along: MS can hurt! Current thinking about the progression of disability, by way of exacerbation (or attack), is fragmented at best. I thought we might have a discussion headed into the weekend about “triggers” for our multiple sclerosis. Many people will convey a memory of great stress before their first big attacks (which, if the dise... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3178899 Fri, 15 Jan 2010 20:51:03 +0100 3178899 http://www.medworm.com/index.php?rid=3178952&cid=t_213491_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fcommitting-to-better-health%2F Well it’s my first week back on Weight Watchers and I lost five pounds. I love the program, I always have. There is no reason that I can’t follow the principles of Weight Watchers for the rest of my life except that food gets in the way. Not the good food, but things like potato chips and chocolate. You know that is why Weight Watchers should really work for me because it allows even these things a little at a time. Health takes commitment. It’s easy for me to commit to my family and friends, but I fall down when I commit to me. This is a new decade and I think I really have to make it about me. It is a little cliché, but so true that if you don’t take care of yourself you can’t take care of anyone else. I let myself get run down before Christmas. I ran throu... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=3178952 Fri, 15 Jan 2010 17:20:26 +0100 3178952 http://www.medworm.com/index.php?rid=3172104&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fa-new-decade-begins-hows-your-ms-today%2F We try to take the second week of each month and post the query: How’s your MS today?  It’s a chance for you to check in with yourself and with other members of this community and it’s a chance for me to be true to something I stated in our very first blog nearly four years ago, “It’s all about you!” This monthly open forum allows for new threads of conversation as well as an opportunity to take stock of where we are with our multiple sclerosis relative to the previous months.  I have found it a very helpful part of my health care plan! As for me and my MS… two day-long flights and bouts of eight hour time change induced jet lag have made me quite very aware of how different my body reacts as compared to just four years ago (my last extended trip to Ireland was just pri... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3172104 Wed, 13 Jan 2010 17:46:04 +0100 3172104 http://www.medworm.com/index.php?rid=3172163&cid=t_213491_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fdiscovering-who-you-really-are-after-cancer%2F “In a world where you can be anything… be yourself” I saw this wonderful quote today. It is brilliant! Imagine really choosing to be who you are and knowing that’s enough. If breast cancer teaches us anything it teaches us how to be our self. Cancer affects who we are, not who we are trying to be, and it takes our real selves to live through it. That person deserves to be heard. Think of the times you gave up your voice. When you wanted to question your doctor’s decisions but didn’t, or when you were in a hospital bed and needed something but didn’t want to cause any trouble. If you don’t listen to your voice, no one else will either. It hasn’t been easy being me. I have always had a deep rooted need to be who others need me to be. And you know... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=3172163 Wed, 13 Jan 2010 17:09:46 +0100 3172163 http://www.medworm.com/index.php?rid=3167281&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fthe-road-of-chronic-pain-is-not-a-smooth-ride%2F Bumpy rides are right up there in my book of horrors. When you have to sit on your problem all day long, any bumps along the way can hurt, often to the point of nausea. Sometimes I think about our great, great grandparents and find it amazing they lived as long as they did without the medications we have; riding around on horses or in covered wagons and having to perform all their own chores without the aid of machinery. Small wonder 35 years of age was considered old. Besides the physicality of those bumps in a life with chronic pain, there are other pits, ditches and potholes we need to watch out for along this path of life we’re on. SELF-PITY is the first pothole that comes to mind. I have a relative who suffered an injury last year. I called to see how she was feeling and she said, w... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3167281 Tue, 12 Jan 2010 22:53:17 +0100 3167281 http://www.medworm.com/index.php?rid=3163916&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Flasting-side-effects-from-ms-meds%2F I can’t remember what I was doing the other day, but the way I moved my arm coupled with the angle of the light showed two very deep groves from the back of my hand, running serpentine around my forearm before they fade into the muscle near my elbow.  I’ve seen these collapsed veins before; the result of treatment with Novantrone for my progressive multiple sclerosis. But that day, again in that certain light, they looked deeper, older and more prominent than I’ve seen in a while. As I made this morning’s coffee, I saw them again and I thought they (and other lasting side effects) might be a good topic for today’s blog. Though Novantrone is “baby chemo,” it is still a pretty potent and dangerous drug.  Anyone that has watched their chemo nurse “suit-up” before h... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3163916 Mon, 11 Jan 2010 19:33:22 +0100 3163916 http://www.medworm.com/index.php?rid=3156577&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fa-controversial-new-cure-for-multiple-sclerosis%2F By this time, you may be wondering if I’ve taken my finger off the pulse of MS research.  It’s been over two months since Canadian television broadcast a “breaking story” about Italian Dr. Paulo Zamboni and his vascular “cure” for multiple sclerosis.  Where have I been on the topic? This subject intrigues me greatly, I’ll admit.  It also frightens me more than minutely and I am still gathering information.  That said, I wanted to open up the lines of communication about the topic today. A brief history for those who may not have heard the news: In 2008, Dr. Zamboni and his research colleagues began publishing findings  referencing something called chronic cerebrospinal venous insufficiency (CCSVI).   In other words, constriction of the blood vessels leaving the brain a... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3156577 Fri, 08 Jan 2010 21:34:11 +0100 3156577 http://www.medworm.com/index.php?rid=3156628&cid=t_213491_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fthe-ongoing-battle-with-breast-cancer%2F I am getting back on track. I have found some great supplements which includes a foul tasting green powder full of vegetables. Thanks to all of you for responding to my lament on my blog about my bad habits; I received some great advice and tips and I am really feeling motivated. I have even decided to follow Weight Watchers to make sure I am eating good food and the right portions. The doctor’s decision that I switch from Tamoxifen to Femera is still a little concerning to me.  I figure if I really get on track and in good physical condition then I will be able to note any changes Femera wreaks on my body more quickly. I haven’t really experienced any adverse symptoms from Tamoxifen except Sister insists it is what is making me fat and makes it more difficult for me to lose w... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=3156628 Fri, 08 Jan 2010 17:37:56 +0100 3156628 http://www.medworm.com/index.php?rid=3153513&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fwhat-secrets-lie-in-a-life-of-chronic-pain%2F This whole business of online sharing is very public. Those of us who share on this blog often hold back a bit because of the glaring nature of our words staying here forever. We hide behind first names, try to watch our language, although that isn’t always easy to do, and often hold onto our emotions to be civil. In short, we make a noble attempt to behave like ladies and gents. All the while, we know, within each of us we are so much more than just our pain. We all have homes to run, many have jobs to hold down just to survive and many have children with needs, tears, laughter and love to share. We worry about money, family problems and mortgages, just like everyone else. The difference is that we have this “albatross” to carry, each and every day on top of the usual stresses of li... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3153513 Thu, 07 Jan 2010 22:16:06 +0100 3153513 http://www.medworm.com/index.php?rid=3149202&cid=t_213491_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fcrohns-book-club-january-edition%2F Happy 2010!  I can’t believe that we are in 2010 already,  time really flies. I should not have written in my last blog about how well I was doing because I got sick that very same night!   I picked up a stomach bug and on top of that had a sinus infection.  I am now taking antibiotics.   So, I have started my New Year off with a blast; sick as a dog.  But, it is getting better now.  I just need to work on gaining the weight back that I lost from being sick.  I was already getting kind of low with my weight and then I lost another three or four pounds on top of that because I’m sick.  I may try drinking Ensure for weight gain again to see if it still bothers me or not. For those of you new to this Crohn’s blog we decided not long ago that we would create a book club since ... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=3149202 Wed, 06 Jan 2010 21:24:40 +0100 3149202 http://www.medworm.com/index.php?rid=3149274&cid=t_213491_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fback-to-the-front-lines-in-the-battle-against-breast-cancer%2F I’m at four month visits with my oncologist now. After five years of trotting off to the same office, I still look forward to visiting my old support network that saw me through chemotherapy. It appears though that after five years, the old support staff has changed. The oncology nurses that hooked me up to the drip bags have all moved on to other jobs and I didn’t recognize anyone in the chemo clinic this visit. Maybe that’s a good thing. Nothing to link me to the chemo period. This visit I met with my doctor’s physician assistant. She checked me out and told me everything looked good, gave me my prescription for a chest x-ray and sent me to the chemo clinic for a blood sample. Before she finished though she advised me that I was finishing with Tamoxifen this month... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=3149274 Wed, 06 Jan 2010 19:37:25 +0100 3149274 http://www.medworm.com/index.php?rid=3146110&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fhow-to-stay-warm-during-the-cold-winter-months%2F I had something else in mind for today but after receiving so many notes from all of you who are reacting to the extreme cold, I thought we’d talk about some practical matters. It may be a bit repetitious because some of us have been chatting about these things, but for other, it will be new information. I often think by gathering all of our experiences together we often come up with some very helpful information. I’d like to chat about current problems and challenges so we can all help each other by pooling our information. FACING THE COLD. One of the greatest challenges those of us with rheumatoid disease face is the effect of weather changes on our bodies. There is little doubt that barometric changes affect us and the effect that both heat and cold can have on us. The most common c... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3146110 Tue, 05 Jan 2010 22:15:38 +0100 3146110 http://www.medworm.com/index.php?rid=3142706&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fa-new-year-and-a-new-outlook-on-life-with-ms%2F A very happy New Year to all! We are finishing up our trip at a most fabulous 16th century castle (with free Internet), so I thought I’d jot a few thoughts before we make our way back to Dublin and onward to Seattle. This year, with the help of a bunch of Irish youngsters, I’ve decided to experience the joys of life…even if it’s a life with multiple sclerosis. I’ve had the wonderful opportunity to lodge at this castle on a number of occasions and every time, I am taken by its beauty and grandeur.  I walk the grounds (study Hazelwood at my side) and see the game kept on the grounds, the statuary and the old, old beauty.  Every time, I enjoy it as I did the first time. This, however, is the holidays and thus in Ireland the wedding season.  We arrived in the middle of many weddin... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3142706 Mon, 04 Jan 2010 20:44:56 +0100 3142706 http://www.medworm.com/index.php?rid=3142785&cid=t_213491_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fsurviving-breast-cancer-to-celebrate-another-year%2F Happy New Year! What are you going to do with this new year, this new decade? A new year is like a clean sheet of paper just waiting to be written on and you get to choose the story that gets written. Breast cancer may have impacted the last decade of your life, or maybe you’re still not quite through the battle but the new decade is marching in so get ready for great things. That is the one problem I have had with being a survivor, the idea that something great is going to happen to make up for the fact that I had breast cancer. Each birthday, each new year is supposed to be this milestone or a marker for something special I’m supposed to do. The wisdom I have gained these past years though informs me that something great does happen each time one of these milestones is reache... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=3142785 Mon, 04 Jan 2010 18:54:56 +0100 3142785 http://www.medworm.com/index.php?rid=3133711&cid=t_213491_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fhow-is-your-crohns-today-christmas-and-new-year-edition%2F Merry Christmas everyone!  I hope that you were able to have a pain free Christmas and I also wish you a Happy and Blessed 2010.  Since we haven’t had a “How is your Crohn’s Today” blog in a while (I think since August), maybe we should have one now and you can tell us how your Christmas was.  In case you are new to our Crohn’s blog, I try to have a blog once a month where we all write in and tell how we are doing (physically and emotionally) with our Crohn’s disease and pretty much just share as much as you want. I am doing really well.  I am always afraid to make that statement because I feel like whenever I do, things go bad, but I’ll risk it today.  I have recently reduced my prednisone to 8mg a day and am hoping to keep going down little by little.  So far, not... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=3133711 Wed, 30 Dec 2009 22:06:03 +0100 3133711 http://www.medworm.com/index.php?rid=3133713&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fholiday-blog-contest-winner-how-ms-has-affected-my-family%2F Today’s holiday guest blog comes to us from Airial of Portsmouth, New Hampshire. We had more submissions to this topic than any of our others which I’ll admit surprised me a bit.  Maybe it’s because this is a place where many of us take time to be alone with our thoughts and others who may share them…or at least have experienced many of them firsthand.  It was very difficult to choose which one of these entries to publish.  Perhaps we should somehow make all submitted entries to this contest available on Everyday Health because I think we could all benefit from them. Airial writes as to how MS has affected her family at its very inception…or, in this case it’s very conception. How MS Has Affected My Family by Arial Sillanpaa It was a chilly New England Tuesday when I was dia... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3133713 Mon, 28 Dec 2009 18:02:29 +0100 3133713 http://www.medworm.com/index.php?rid=3118982&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fwishing-all-of-you-a-memorable-christmas-song%2F We may be maimed, sore and hurting but our hearts and minds are, for the most part, intact; that is if you don’t use too strict a sliding scale of rationality. When assessing ourselves, I think we’re allowed to be a little “loosey Goosey”, don’t you? Our Christmas celebrations may change, our festivities become more simplistic and our pockets more lean but we still have our memories, our friends and families who love us and whom we can love in return. I sometimes wonder if it’s better to love or to be loved. I guess you’re a winner both ways. One good thing about being older is all the memories of Christmas past. I’m old enough to especially remember all the wonderful, silly and often beautiful songs of past years. It’s funny how some of them stay with you even though you... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3118982 Wed, 23 Dec 2009 21:45:22 +0100 3118982 http://www.medworm.com/index.php?rid=3118983&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fholiday-blog-contest-winner-the-good-that-has-come-from-ms%2F The second of our Holiday Guest blogs comes to us from Sarah of Boston, MA.  This may have been the most difficult of our editorial panel’s decisions as we had so very many wonderful submissions.  It seems that there are many of us who, facing the stark realities and unknowns of multiple sclerosis, choose, for reasons of solace or of survival, to see some kind of good which has come as a result. Sarah’s new gained perspective and thus compassion is a good way to enter the Christmas holidays. Growing with MS by Sarah Tourjee Multiple sclerosis appeared in my life when I was 17 and just edging into adulthood.  Recently, I read and have to agree that some of the most formidable years of personality development occur in your late teens to mid 20s.  As such, I realize now that my diagno... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3118983 Wed, 23 Dec 2009 21:37:37 +0100 3118983 http://www.medworm.com/index.php?rid=3119027&cid=t_213491_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fsurvive-and-rejoice-this-christmas%2F Another Christmas to rejoice! As breast cancer survivors, Christmas provides another milestone each year. More importantly we can look to those we love and cherish our moments with them. I wish you and your family the happiest of Christmases and the joy you deserve. (Source: Life with Breast Cancer) Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=3119027 Wed, 23 Dec 2009 20:44:42 +0100 3119027 http://www.medworm.com/index.php?rid=3111550&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fa-christmas-wish-list-from-a-chronic-pain-person%2F In an attempt to keep my requests modest, I will begin with something simple; for instance could I have a new body? It’s the magic season, isn’t it? If reindeer can fly, then…? If I have to be stuck with the same old me, could I please have understanding, empathy and caring from those near and usually dear to me? I would like a big bag full of jollies…approximately one per day. I would like at least a few hours each day without pain. Do I have to be legally stoned to achieve that? I would like my favorite chocolate or caramel dessert to be magically cleared of all calories. I would like to be shapely, sexy and voluptuous. (Hey, it’s a wish list!) I would like for my life to be filled with kisses and hugs…giving and getting. I would like to keep all the wonderful old friends I h... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3111550 Tue, 22 Dec 2009 16:19:54 +0100 3111550 http://www.medworm.com/index.php?rid=3111647&cid=t_213491_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Ftake-it-easy-this-christmas%2F I’m ready for Christmas! My tree is up, my house is decorated and even the outside of my house is all lit up for the holidays. My Christmas shopping is pretty much done and some of the gifts are wrapped. This is a major breakthrough for me. Every Christmas Eve I wish I had two more weeks to get ready, not this year though. In the midst of the busiest season I have ever known, I somehow managed to pull it all together. Being organized doesn’t come easy for me. I’m one of those people who does better when I have more stress and a lot to accomplish; it makes me focus. Another successful Christmas that I can remember was the one I celebrated in the middle of chemotherapy. I was working, I was bald and I was chemo challenged – that’s what I call being physically weaken... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=3111647 Mon, 21 Dec 2009 21:46:18 +0100 3111647 http://www.medworm.com/index.php?rid=3105248&cid=t_213491_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fmemorials-to-the-battle-with-breast-cancer%2F Almost all breast cancer survivors can remember where they were, the day and the time when they heard the words “you have breast cancer.” Lately I haven’t thought about this very much, but the other day I drove by the building that housed the clinic where my doctor was, and where I was the day she told me I had breast cancer. But, this is Michigan and now that building like many others here is empty and for lease. That morning, (the one when I heard “those” words) I dropped my husband off at the airport which is only about three miles from the doctor’s office. He had to take a flight at 11:00 and my doctor’s appointment was at the same time. He had to be away for work and though he wanted to be at my appointment I made it clear he needed to go and that I would be ... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=3105248 Fri, 18 Dec 2009 20:52:13 +0100 3105248 http://www.medworm.com/index.php?rid=3100932&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fmr-scrooge-be-gone-and-take-the-grinch-with-you%2F Really! Don’t you know it’s Christmas? Yet, here you are, bringing it on. Your “bah humbug” presence is trying to louse up the happiest time of the year.  I know your type.  You’re the grouch at every family gathering; the insensitive friend who has no comprehension of chronic pain and no respect for the courage it takes to live this way. You’re that individual who cannot see life beyond yourself. How tragic is that? You’re missing so much. But I don’t really want to convert you; that’s Tiny Tim’s job. I just want you to be gone. The problem with you is you take many forms. Isn’t life difficult enough without all the struggles you throw our way, compounding our predicament with further complications? Life hands us disease and you hand us discouragement. Life assault... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3100932 Thu, 17 Dec 2009 20:37:58 +0100 3100932 http://www.medworm.com/index.php?rid=3100933&cid=t_213491_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fmore-on-my-anxiety-and-crohns-disease%2F As you recall from my previous blog, I have been working on trying to figure out what triggers my anxiety, recognize it when I experience anxiety and try to handle it better.  I am also trying to bring myself back to the girl that I used to be.  Before all of the terrible episodes with my Crohn’s disease I didn’t have to worry about falling down and breaking a bone, or taking a medicine that will cause me to flare up terribly, or have to worry about all the scary side effects of medicines.  I used to be so carefree and outgoing.   I feel like I have lost sight of who I am.  I know that I am a good worker, a good mother and a good wife but with all of my ups and downs with my medications and side effects galore, I am not really sure who I really am.  I have all these feelings tha... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=3100933 Thu, 17 Dec 2009 20:02:16 +0100 3100933 http://www.medworm.com/index.php?rid=3089504&cid=t_213491_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fbad-habits-and-breast-cancer%2F Both my boys are living away from home now and I am finding it hard to get motivated for the Christmas season. This used to be such a huge holiday for me. I have been so busy this fall with working and taking classes at college that the fall has zoomed by. The other thing that has happened is that I have fallen back into some pretty bad habits. I am not eating as well as I should since junk food and fast food drive ups seem to fit my schedule better. This is not good. Every now and then I get that little nudge from that little voice that reminds me that I can’t take my health for granted. Breast cancer survivors know what I mean. We had our warning and we need to heed it. Especially now that I am a half century old, my health matters. Although I have not been eating that well or exer... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=3089504 Mon, 14 Dec 2009 22:06:36 +0100 3089504 http://www.medworm.com/index.php?rid=3079465&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Feditors-note-a-sue-update%2F I wanted to give everyone a quick update.   Sue has acquired a virus that seems to have spread to her eyes.  She is having problems with blurred vision today and is unable to write a blog entry.  Sue is such a fighter and loves this community so you know it takes a lot to make her miss a day on the blog.  Please wish her well and a speedy recovery.  We’re all pulling for you Sue! Take care everyone, -Natalie @ Everyday Health (Source: Life with Chronic Pain) Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3079465 Thu, 10 Dec 2009 21:24:18 +0100 3079465 http://www.medworm.com/index.php?rid=3079466&cid=t_213491_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fanxiety-and-crohns-disease%2F The phrase that one of our blog community members, Todd, writes often in our comments is, “Keep your mind in the game.”  That has sort of become my mantra lately.  I have to tell myself this so I can remember what is important in the big picture so I will stop worrying about the little stuff.  I have had problems with anxiety for a while now and I think that it has been building up the last few years.  One of my problems (probably due to the fact that I am female) is that I tend to over analyze everything.  Things happen to my husband, he acknowledges them, and then he forgets them and moves on.  Things happen to me and I analyze every facet of every emotion that I felt and what it was or what could I have done differently.   I am now trying to emulate my husband and be more li... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=3079466 Thu, 10 Dec 2009 16:37:26 +0100 3079466 http://www.medworm.com/index.php?rid=3067194&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Ftysabri-what-do-you-want-to-know%2F Your attention to the Life with MS Blog has made us a visible part of the multiple sclerosis community and because of that, people will take our calls. I had a long and in-depth conversation the other day with the Senior VP of Drug Safety and Risk Management for Tysabri.  She was very open in proffering information and answering all of my questions so that I could relate them to the community. As I look to my pages of notes from this conversation, I know that we’ll have much to talk about in the coming weeks.  In return for the time and attention I was afforded, I wanted to give something back to the people who are trying to make our lives better: feedback from our readers. In reading through the comments on our other Tysabri blogs (and for my own purposes) it’s obvious to me that we... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3067194 Mon, 07 Dec 2009 22:58:19 +0100 3067194 http://www.medworm.com/index.php?rid=3059825&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fend-of-year-wrap-up-how-is-your-ms-today%2F It’s hard for me to believe that another year has slipped away!  The holiday season has begun and the days will seem to pass even more quickly now. Time to take a moment for our monthly check-in: How’s your MS today? We open this posting each month for ruminations and thoughts on the subject of each person’s personal journey with multiple sclerosis.  Reading back through your comments this past year, I see that much has been going on in our bodies for many of us. As for my MS, I’ve “recovered” from the MS thing that was plaguing me last month.  I put the word in quotation marks because I’m not back to the old baseline, but I seem to have stopped the slide.  So, that’s good; right? The next two weeks are going to be very busy as we prepare for our trip to Ireland.  I’... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3059825 Fri, 04 Dec 2009 16:35:44 +0100 3059825 http://www.medworm.com/index.php?rid=3056782&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fan-update-on-sues-irritable-bowel-syndrome%2F Every once in awhile I run across articles, have experiences in my own life and learn something from someone else that I believe would be beneficial or at least of interest to all of you. I say this as explanation for the fact today’s blog will be a hodge-podge of things, not necessarily connected. Many of them are anecdotal experiences, not necessarily the subject of some vast scientific study; just little old me trying them out. Just think of me as a human guinea pig with a bit of nursing knowledge to keep myself safe. You will recall I have had, among my dirge of complaints, been fighting irritable bowel syndrome for a number of years. A recent bout of it resulted in a blog not long ago which stirred up a lot of response. Many of the ideas were of great interest to me. Two of them, in... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3056782 Thu, 03 Dec 2009 23:05:02 +0100 3056782 http://www.medworm.com/index.php?rid=3052284&cid=t_213491_129_f&fid=36036&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fkelly-building-a-crohns-disease-community%2Fcrohns-disease-book-club-blog-december-edition%2F A few weeks ago I suggested that we start a book club to get our mind off of Crohn’s disease for a bit and allow us to think about something else.    It seems like you all agree, so let’s try it out.   Remember, there are no set rules here, we can change our book club format as many times as it takes for this to be fun for all of us. Since I am the one who writes the blog, I will write about the book (or books- since I read several in a month) that I read the previous month.  I will give a short synopsis of the book and state whether it was a good read.  I will rate the book on a scale of 1-10, 1 being the worst and 10 the best and then tell you what I liked best about the book and what I liked least.  Since this is the first real Crohn’s book club blog, we should all write i... Life with Crohn's blogs http://www.medworm.com/rss/comments.php?id=3052284 Wed, 02 Dec 2009 22:18:38 +0100 3052284 http://www.medworm.com/index.php?rid=3052345&cid=t_213491_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fbeating-cancer-is-a-family-affair%2F This Thanksgiving I did something a little different; I went to Canada to see family. Although they had already had their feast last month, it was really nice to have the time with them. Sister was a little under the weather and hasn’t been sleeping well lately. I think there is a lot going on with her since the hysterectomy to reduce her risk for ovarian cancer. As a BRCA carrier she has taken steps to address her risks for breast and other cancers due to the gene mutation. I have to say I worry about her. I also got to see my niece and her new baby. Nicole also tested positive for the BRCA II gene mutation and having her babies in her twenties is something we have heard can help reduce her risk. More importantly, once she has had all her children she can turn her efforts to other w... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=3052345 Wed, 02 Dec 2009 21:53:39 +0100 3052345 http://www.medworm.com/index.php?rid=3048242&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fhands%2F These hands once strong and busy Now seem so inhumane, Compared to applying bandages Or searching for a vein. To wipe emerging newborns Who are screaming their first breath, To hold worn, experienced hands Of those embracing death. Nursing felt so worthwhile With its many healing arts, My hands touched many bodies As well as aching hearts. Some days I feel the burden, Of your pain and my own. Its descending heaviness Like lead within my bone. Were I Mrs. God Almighty So many things I’d change Beginning with your life and mine, So much I’d rearrange. I’d start with all the injured From war and accidents, All the fine young men and women Dealt life’s cruelest incidents. Courage has new meaning When I witness what they do Returning into battle, wounded, Much like me and you. We slog a... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3048242 Tue, 01 Dec 2009 21:33:16 +0100 3048242 http://www.medworm.com/index.php?rid=3044889&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fhalt-ms-and-stem-cell-research%2F My wife, Caryn and I were talking the other day about my next options for MS disease modifying therapies. As many of you know, interferon treatments are out for me.  Copaxone is prohibitively expensive (and because of Medicare Part B, I am not eligible for drug company assistance) and I’ve used my lifetime maximum of Novantrone.  That would seem to leave Tysabri as our only (FDA approved) option. Then we started talking about the HALT-MS (high-dose immunosuppression and autologous stem cell transplantation for MS) study as a possible option.  HALT-MS is an experimental treatment for multiple sclerosis which is showing some very impressive results. The problem is…well the problems are many.  The first problem was that I didn’t know as much about the treatment as I should! I ma... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3044889 Mon, 30 Nov 2009 22:40:07 +0100 3044889 http://www.medworm.com/index.php?rid=3029967&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Flife-with-ms-holiday-blog-contest%2F How would you like to blog about living with multiple sclerosis?  That was the question posed to me nearly four years ago now. It’s hard for me to believe much of what my affirmative response to that question has meant.  The fact that we are creeping up on our 500th post here at Life With MS is astonishing to me.  The fact that so many of you have made checking-in a regular part of your life humbles me.  That so many of you leave comments about my thoughts is an honor. When, however, I read your words of advice, condolence, solace and encouragement to one another…I am proud! Now, Everyday Health and Life With MS announce your chance to blog, here on these pages!  How would YOU like to blog about living with multiple sclerosis? At the end of this year, during the holiday weeks, we ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3029967 Wed, 25 Nov 2009 17:34:28 +0100 3029967 http://www.medworm.com/index.php?rid=3026814&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fa-personal-thanksgiving-list%2F As each year passes, living with chronic pain and disease, I find myself grateful to still be alive to be grateful, to be grateful to still be alive, well, you get the picture. I’m thankful for modern medical care which saves us from the old fears of scurvy, consumption and the ingestion of laudanum; but we still have a long way to go. I’m thankful for the many medications, like the dreaded prednisone, biologics, NSAID’s and anti-malarials, in spite of their numerous side effects. I’m thankful there isn’t as much fat in my behind as there is in my chin…chins…I think. In spite of living with daily pain, I look back in awe and wonder why I still have as many “marbles rattling around in my jar” as I do. I’m thankful for the insight which I have gained from all this sufferi... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3026814 Tue, 24 Nov 2009 18:51:29 +0100 3026814 http://www.medworm.com/index.php?rid=3023377&cid=t_213491_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fanother-side-effect-of-chemotherapy-smell-sensitivity%2F This Saturday I had an amazing day with one of my close friends. She planned a fun girl’s day for us starting with a pedicure for me. She wanted me to unwind – I’ve been a little overwhelmed lately. It was a wonderful day and I am so grateful to have a friend like her. In fact I have the most wonderful friends in the world, they all care deeply and make me feel loved. My darling friend had a sample of a fragrance she loved and wanted to purchase a bottle of the spray cologne. The problem was she didn’t know the name so the sales associates had to spend some time to track it down, which involved smelling a lot of perfume samples in the store. I used to always wear perfume. It was one of my favorite gifts, and my mother always gave me my favorite fragrance for Christmas. ... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=3023377 Mon, 23 Nov 2009 20:55:15 +0100 3023377 http://www.medworm.com/index.php?rid=3015387&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fneuropathic-pain-from-multiple-sclerosis%2F Multiple sclerosis can hurt! Pain is a real part of life with MS for over half of us. Pain can come in several forms and affect several areas of the body.  The pain I’d like to proffer for our consideration in this post is called neuropathic pain or neuropathy. This is a pain which is caused by a dysfunction of the peripheral nervous system (PNS).  Owing to the fact that we have a disease of the central nervous system (CNS), many of us may not be familiar with the PNS. These are the nerves which connect the limbs and organs to the CNS. While there is not suspected demyelination of the PNS, the stripping and scaring of neurons and axons in the CNS is thought to cause misfiring of signals from the PNS, which then tell the brain that we are feeling pain in an uninjured part of the body. I... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3015387 Fri, 20 Nov 2009 20:11:58 +0100 3015387 http://www.medworm.com/index.php?rid=3012528&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fsue-takes-the-day-offsort-of%2F I will not be submitting my regular blog format today. I’m feeling overwhelmed and fatigued and after giving it some thought, decided this was the best way to go. I’m certain all of you have noticed how popular the pain blog has become and over the last few days we have received an overwhelming response from readers. It troubles me when I can’t answer each and every one of your entries, although I try. There are still about 25 entries from the last few days that deserve a reply and I want to spend the time today, when I would normally be writing a new blog, in answering all of those. I believe if you take time out of your life to share your opinions with me, I always want to reply. I’m still having a struggle with IBS as well as the regular pain problems, therefore, today, I’ll p... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3012528 Fri, 20 Nov 2009 16:36:05 +0100 3012528 http://www.medworm.com/index.php?rid=3003928&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fms-recipe-for-success-apple-pie-oats%2F Breakfast: It’s the most important meal of the day. We’ve all heard that and, at some level, we understand that eating a good breakfast is good for us.  We also all know that, MS or no MS, we don’t always do that which is good for us… Each month we take one of our posts here at Life With MS and chat about food.  This month, I have a special recipe from my friend Heather Nucifora R.D.  Heather and I have been part of a team teaching nutrition, sanitation, menu planning/shopping and cooking to home health aides these past few months. Home Health Aides are trained assistants that help (in this case, older) people stay at home and live more independent lives, even if they need help with most of their daily routine.  It is not, of course, lost on me that I know of several people liv... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3003928 Wed, 18 Nov 2009 16:33:59 +0100 3003928 http://www.medworm.com/index.php?rid=3003927&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fhow-to-prepare-for-the-holidays%2F Can you hear the gobble of the feisty turkey that got away? Can you hear the icy tinkle of sleigh bells on a passing sleigh or perhaps flying overhead? Ready or not, here they come. The holidays are upon us or at least rounding the corner while on their way. Ignoring them won’t keep them from arriving but early preparation can make them more enjoyable and more than survivable. We have to adapt to survive and to enjoy our traditional celebrations. When you live a compromised life due to chronic disease and/or pain, the rules change. I think our values also change. We have to learn to sort, choose and prioritize as we decide what matters most. It’s different for each of us. I used to be a “last minute” kind of gal. It was not at all unusual for me to be sewing a special pillow, quilt... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3003927 Tue, 17 Nov 2009 22:13:18 +0100 3003927 http://www.medworm.com/index.php?rid=2999779&cid=t_213491_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fbreast-cancer-and-hot-flashes%2F I have been on Tamoxifen going on five years now, after you account for the breaks I took. At first I experienced hot flashes as a side effect. For the past several months I have to say that the hot flashes have really tapered off. This past week though I noticed that the hot flashes have returned with a vengeance. It seems odd, but I think I know why. I even wrote about this before. My husband is your typical football fan. He loves to spend the weekend clicking from college football games on Saturday to pro football games on Sunday and every game in between. In order to accommodate sitting through 36 hours of football he likes to snack – recreational eating he calls it. One of his favorite snacks is fried spicy hot wings. He buys them frozen and sticks them in the oven with pizza snacks... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=2999779 Mon, 16 Nov 2009 20:57:36 +0100 2999779 http://www.medworm.com/index.php?rid=2989295&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fyour-owners-manual-for-a-life-with-chronic-pain%2F Your body is not warranted against defective workmanship or defective parts. No additional person, priest, minister or even your Mama, may issue you an extended warranty. You are to use your body according to the package directions or what your parents taught you to do. This also applies to learning from school teachers. You have a responsibility to learn, grow and behave. In case of defect, you can not return the product to the manufacturer. You’re on your own. Defective genes or other defects brought on by damaged DNA are blamed on God and considered natural disasters. Please keep a copy of your date of purchase or date of birth. You will need it when you have to fill out reams of repetitious paperwork in the coming years. We recommend your product, or body should be insured at all tim... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=2989295 Thu, 12 Nov 2009 22:05:03 +0100 2989295 http://www.medworm.com/index.php?rid=2977449&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fa-new-warning-label-for-tysabri%2F Tysabri has been a popular topic here on the Life with MS Blog for several years.  In fact, one post on the subject has nearly 1300 comments and is still an active source for people taking or thinking about taking the drug more than three years after we posted that blog. Events of this past month, and this past weekend specifically, bring the topic to the fore once again. In early October of this year, the pharmaceutical companies which make and market Tysabri were acknowledging 13 cases of the rare and potentially fatal condition progressive multifocal eukoencephalopathy (PML) Last week it was disclosed that an additional 10 cases of PML were reported (most of them in Europe; in fact, most of the now 24 reported cases are in European MS patients).  To say that finding information on any... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2977449 Mon, 09 Nov 2009 22:23:10 +0100 2977449 http://www.medworm.com/index.php?rid=2977529&cid=t_213491_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fwe-interrupt-this-life-to-bring-you-breast-cancer%2F Do you ever feel like that? It’s like someone just put a stop to your life and stuck you with breast cancer. I have to wonder every now and then how things would be different if I had never been diagnosed with breast cancer. I found a picture of myself recently that was taken a year after breast cancer when my hair was a dark brunette after growing back. If I had never had breast cancer I never would have known what I looked like with dark hair. Isn’t that silly? But those are the shallow thoughts I have sometimes. Another one is thinking about how I might have gone for a breast lift and implants now that I am aging a little bit. With my reconstructed breasts I may have ended up on the better end of this deal though. Anyways, what I am talking about is the private world where we en... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=2977529 Mon, 09 Nov 2009 21:46:27 +0100 2977529 http://www.medworm.com/index.php?rid=2970385&cid=t_213491_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fa-tattoo-to-cover-up-my-chemo-port-scar%2F A real growing trend is tattoos. Remember when you only saw them on sailors? Well if you are my age you do. Anyway, I have been researching tattoos for a paper I am writing for one of the classes I have been taking at the university this fall. It seems they could be dangerous, certainly hard to get rid of, and even a hindrance to success in the work place. Still, more and more people are getting them. As one young person told me; “By the time I make it to management, the CEO will have a tattoo, so my tattoo will be a usual thing.” He is probably right. For anyone that has had breast reconstruction you may have had your areola tattooed onto your new breast. One thing that I have been thinking about getting a tattoo for is my port scar. On the right side of my upper chest the scar that w... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=2970385 Fri, 06 Nov 2009 20:28:57 +0100 2970385 http://www.medworm.com/index.php?rid=2970336&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fmultiple-sclerosis-on-the-radio%2F As many of you remember, I’ve been lucky enough to host several webcasts on the topic of living with multiple sclerosis over the past few years.  This weekend, I’ll be on the other side of the microphone. Along with my MS specializing neurologist, Dr James Bowen, I will be a guest on the Saturday morning health program, Real Medicine with Carrie Curtiss. The program airs at noon on Saturday, November 7th (good grief…is it November already?) and we’ll be on for an hour (maybe a bit more if there are loads of questions). For those of you in the greater Seattle area, you can listen on KVI - AM 570 (http://www.kvi.com/).  If you are not in the area, you can listen live (again, 12:00pm Pacific Standard Time) via their “Listen Live” function. We’ll be talking about MS: The living... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2970336 Fri, 06 Nov 2009 20:06:42 +0100 2970336 http://www.medworm.com/index.php?rid=2967430&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fbattle-of-the-sexes-in-a-life-of-chronic-pain%2F The question is often raised whether it is men or women who are more susceptible to feeling pain. The actual amount of pain an individual is experiencing is difficult to assess because our interpretation of pain is extremely individual. Does it vary according to our sex? We have all been asked the question about our amount of pain according to the pain sliding scale. I know you’re all familiar with it. You remember the scale which starts with 1 and goes up to 10? The physician or his/her assistant usually asks you, on an office visit, where your pain is currently with number 1 being the least amount, 5 being in the middle and 10 being the worse pain you can experience. I have always thought that pain scale to be a bit useless because it so greatly depends on your mood at the time, your f... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=2967430 Thu, 05 Nov 2009 23:02:20 +0100 2967430 http://www.medworm.com/index.php?rid=2963237&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fspeaking-of-november-how-is-your-ms-today%2F I love the folk song January Man by Dave Goulder.  The first time I heard the song was in a version sung by Christy Moore while driving a back road of County Kerry, in Ireland. In this song, each month is represented by a man.  “The poor November Man” as the song goes, “Sees fire and wind and mist and rain and winter air.” Good Grief…the November Man has MS! Each month we take time in the first week to allow for an ongoing discussion of how your multiple sclerosis is treating you.  This is a popular spot for comments and an open exchange of ideas and issues. I love to go back and read the comments throughout the month. As you may have gathered from my last few postings, my MS has been making itself known even more than most days.  I’m battling, these days.  My legs are hea... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2963237 Wed, 04 Nov 2009 21:27:19 +0100 2963237 http://www.medworm.com/index.php?rid=2963288&cid=t_213491_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fenvious-of-breast-cancer-awareness-month-dont-be%2F This time of year people get breast cancer envy. I agree that sounds a little startling, so let me tell you what I mean. Cancer touches so many lives and there are so many different types of cancer. All of them are insidious. With Breast Cancer Awareness month it is pretty evident that breast cancer gets a lot of attention. I think for many who battle other types of cancer or have watched their loved ones battle colon or lung or brain cancer the question becomes, “Why does breast cancer get all the attention?” This is something that I wonder about as well. Since my niece had childhood leukemia and my dad battled non-Hodgkin’s lymphoma I think more effort needs to be placed on addressing these types of cancers. My mother also battled lung cancer and I know how egregious that disease i... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=2963288 Wed, 04 Nov 2009 20:11:55 +0100 2963288 http://www.medworm.com/index.php?rid=2954673&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fvoting-and-multiple-sclerosis%2F Worry not!  This isn’t a blog posting about something/someone I think you should or should not vote for.  Rather, I want to bring up the topic of voting, as in the act of going to the polls. I’ve always enjoyed the experience of going to my local polling place on Election Day. When I could, I would walk to the polls, stand on line (sometimes for great periods of time), cast my vote, and walk home a fully engaged member of the Republic. Now, however, my county is 100% vote by mail for all elections. I’m not going to say I don’t miss the activity of fulfilling my civic duty alongside and shoulder to shoulder with my fellow precinct members.  I’m also not totally sold on the idea as far as being able to factor in eleventh-hour information into my vote. As a person with a disabili... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2954673 Mon, 02 Nov 2009 19:49:15 +0100 2954673 http://www.medworm.com/index.php?rid=2943958&cid=t_213491_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fflying-witches-and-lamp-posts%2F Since this is the fall, our thoughts turn to falling leaves, fresh rain, and the smell of dry earth with the first raindrops hitting it as well as all the preparations for Halloween. In our small town we have these seasonal decorations of wooden witches attached high above the street to lamp posts all along the avenue. The witches are facing the posts with their little striped stockings and high heeled shoes hanging on one side of the post, their hats askew, as if they are hugging the posts. My little grandson just loves them and says, “Let’s drive by and see the smashing witches.” During this season we feel like many of the traditional characters. Most of us know what it’s like to feel like a witch, act like a witch and even smash into an occasional post. That post is often repres... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=2943958 Thu, 29 Oct 2009 21:52:12 +0100 2943958 http://www.medworm.com/index.php?rid=2939450&cid=t_213491_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fhow-do-you-cope-on-a-bad-multiple-sclerosis-day%2F I have good days and bad days.  I don’t suffer from multiple sclerosis; I live with MS.  I’m a healthy person with MS.  And, the ever popular,  I have MS, MS doesn’t have me! OK, these are lines we use to comfort others and to get ourselves through.  I have no problem with them; I use them myself.  They’re slogans, if you will, that we use to get through/past that part of a conversation.  Slogans may be trite and glib but they’ve helped elect officials, sell products and recruit militaries for centuries. So, what about the days that are “bad days,” the days we do suffer the effects of our disease…the days multiple sclerosis does have us? No sense hiding it I’m in the midst of a “thing” right now (for those new to the Life with MS blog, I tend to use “thing”... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2939450 Wed, 28 Oct 2009 21:34:10 +0100 2939450