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Showing posts from June, 2018

Firsts.

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Firsts: one of the scariest parts of MS. Whether it's your first MRI, your first neurologist appointment, your first relapse, your first round of steroids, your first MS hug, your first bout of severe pain, or any first experience of the other mysterious symptoms that tend to pop up for those of us with MS, firsts can be scary and overwhelming. The good news? You aren't the first . I've found that to be a comforting sentiment; when I experience a first, I turn to the endless number of resources and people online who have likely had this first before - maybe even had their second, third, fourth, or tenth round of whatever I'm experiencing for the first time.  I think my hardest first with MS was the MRI's; not only were they my first MRI's of my head and spine and therefore the first times I had to be entirely inside the MRI machine - ankles and knees are much easier - but they were also accompanied by the uncertainty of "is it MS or is it not?"

Your News to Tell

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Should I tell people I have MS? Who should I tell? When should I tell people? Do I have to tell people? Who can I trust with this information? This might be one of the hardest initial steps to take on following diagnosis: who and when and how do you tell people if you even do. When I was diagnosed, I knew right off the bat I wasn't going to be secretive about it; I totally and completely respect people who choose to keep this news to themselves or a few very close confidants. This situation has to be tailored to you and what you need, what you're comfortable with, and what and who is going to make you feel safe. Unfortunately, even if I had wanted to keep my diagnosis private my symptoms weren't allowing for that. I had been struggling with nausea and vision issues to a level that it had been impacting my social life and ability to carry on my life normally for months leading up to my diagnosis; many of my friends and most of my family was already very aware somethin

The MS Roller Coaster

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This last week has been a serious roller coaster, both with regards to my MS and beyond. I had one of those weeks where my disease wanted to make itself very much known, and I felt as though it was reminding me of its presence at every turn. In living with MS, these things just happen sometimes - sometimes we can't escape acknowledging the burden of the disease and how it impacts our lives.  I went on a long-awaited weekend getaway to Arizona with my husband, my brother-in-law and his wife and toddler, my in-laws, and another couple that are friends of the family. It was planned with the intention of having a weekend full of golf for the boys, beers by the pool, relaxation, and a substantial amount of In-N-Out (obviously). We kicked off the trip with a flight delayed by two and a half hours...you can imagine how happy my 16 month old niece was about that...and my body was just about as thrilled as she was to be sitting in uncomfortable airport chairs for hours prior to being con

Maintaining a Social Life with MS

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This weekend I had my first major test of my newly discovered MS limitations. While I've maintained a decent social schedule since being diagnosed and starting treatment, typically I'm in complete control of that schedule or have my husband by my side to identify and help manage triggers and acknowledge my limits. This weekend however, I was on my own to experiment with what I can and can't handle: it was bachelorette party time.  I had every intention of talking about how I worked through selecting a treatment option this week, but honestly this topic felt just as important. I think it's scary at first to go into situations you could have previously taken on with the confidence of health; at the same time, you don't want to sit out of life's moments and celebrations just because you have a chronic illness, so I wanted to give some reassurance that it  is  possible to continue being actively involved in life even if you have MS.  I know what you're think

The Holy Grail of MS Exercise

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Just as with all other aspects of MS, each person's tolerance for exercise and ability to work out is different. Many of us need to be careful of a rising body temperature, which eliminates many cardio options. For some, balance and stability is a limiting factor for safety reasons. Strength can also be an issue when selecting your best form of exercise; while we want to build and maintain it, it's hard to find a starting point if you don't yet have it.  Growing up I was an athlete. I played soccer from the age of four through high school, with the majority of those years being at a competitive level. Even after high school I continued to play in recreational adult leagues to stay in shape and continue my love of the sport. After a hip injury during a game that required surgery, my surgeon ( shout-out to Dr. Ellman! ) informed me that it was time to retire unless I wanted to see him again for the other side eventually. This was my first experience of struggling to find a

Tools to Make Life Easier

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One thing I've learned since being diagnosed, is that if there is a tool/method/strategy/product that is going to make life with MS easier, I'm willing to try it . That being said, I think we'd all like whatever help we can get to make life a little more manageable so I figured I'd start a list and just update as life goes on, sharing my favorite aids. (And no I'm not getting paid to post any of these, just tryin' to help y'all out!) So I just discovered this product and I'm so obsessed with it I'm moving it to the top of the list. This one comes compliments of my FabFitFun box, so I didn't even find it myself I just got lucky that it was one of the products included in the summer box: Aromatherapy Associate's De-Stress Muscle Gel . It's recommended for sore muscles and joints, and is also said to help with stress headaches if used on your neck. I can't vouch for the science behind it, but it feels so good  on days that I'm dea