MS is messy

If Covid has taught us nothing else, we have all learned that plans can and do change last minute. The trick is to roll with the punches which is what we did last week when we had an impromptu holiday party that might not have happened if not for Covid. I understand that taking precautions during a worldwide pandemic is crucial for mine and everyone else's health but being with family and friends...

Being around disabled people makes some uncomfortable but after years of self work, I am finally not taking that personally. I know that what others think is none of my business but taking care of myself on a daily basis is now my full time job. My hope is that everyone is accepted and appreciated for being exactly who and what they are.

I have figured out some life hacks to make living with MS an easier task. In this podcast I share some of my daily routine and the things I've discovered that will make accomplishing my goals possible even if those goals are just meeting my basic needs most days. I refuse to let this disease keep me from leading an active, full life I was destined for. Out of both necessity and convenience, I've f...

Several times a month, I run into a business or even a medical facility that is not accessible and I'm tired of tolerating this inconvenience. The ADA or Americans With Disabilities Act became the law of the land in 1990 but you might be surprised to learn how many public facilities are still not adhering  to even the most basic requirements of this important legislation. I'm going to stop ac...

I don't think getting up on a huge horse to improve your MS symptoms is the first or even the second or third option that people might consider after diagnosis but I'm here to tell you, the benefits of equine therapy are immeasurable. This podcast goes into a little more detail about how hippotherapy can also help other disabled people by giving riders a challenging and fun way to manage  gai...

Like so many others, I have been glued to the Olympic coverage seeing so many parallels to my own life: struggling but coming up short, needing my body to perform and dealing with the "twisties" in real time. Like Simone Biles, I have struggled with understanding my place in space because of the dizziness, yet another lovely MS symptom. And like Simone, I will continue to do what I need to do to e...

I have written and talked about MS heat intolerance for years but it bears repeating. Heat and humidity can exacerbate symptoms like fatigue, numbness and blurry vision although cooling the body off will usually return everything back to normal or whatever your normal is. No one wants to miss out on the summer fun because of heat related relapses so make the necessary adjustments and preparations...

I had a full blown panic attack last night at bedtime forcing me to finally seek the therapy I have been putting off for so long. I understand why I am an anxious, codependent woman but feel powerless to get to the bottom of my problems myself. There is nothing wrong in seeking help when I need it and wouldn't hesitate if it were a medical problem so I'm a little embarrassed that I'm just now real...

Ironically, I didn't discover my true purpose in life until I was diagnosed with MS all those years ago now. I was in a vicious cycle of working myself sick while never feeling like I was really present for my family either mentally or physically. In a strange way, MS has given me a very strong sense of purpose that I might never have had otherwise. Because of the fear and isolation I faced when f...

I am starting on my eighth disease modifying medication tomorrow and I'm more than a little nervous about it given my history with MS drugs. I am back to self injections with the newest MS medication on the market called Kesempta. Being at home to take this medicine beats traveling miles and sitting for up to 6 hours at an infusion site but at least there is a nurse on staff who can monitor my rea...

Every year I say I'm done with fundraising for the National Multiple Sclerosis Society yet here I am again. I signed up to be captain of a small but mighty WALK MS team and since there's no actual WALK event this year due to Covid, I've been forced to be more creative than ever in my fundraising efforts. Asking people for money in this climate is very stressful making me feel more vulnerable than...

I have spent years looking outward for ways to heal my MS but it's not working. In fact, I'm getting worse, weaker everyday. Had a lightbulb moment this weekend that I share in this podcast finally deciding that the answers are within me. I am unconsciously bringing more pain and disability into my life because that's what I'm putting all my energy into fighting. What you resist persists. I am goi...

Botox is not for just for smoothing out the wrinkles anymore. It's the miracle drug that helps me deal with an overactive bladder. After years of dealing with this frustrating MS symptom, I am grateful to have discovered this procedure which really has been life changing. When you hear people talk about invisible illness, overactive bladder is one of those symptoms that is easy to hide from others...

I know it's human nature to compare ourselves to others so I'm not immune to this behavior. Life is too short to spend your time thinking about what you don't have instead of appreciating what you do. I know everyone has their own challenges but some days I wish that my disability did not hold me back from the life I once led. I have to constantly remind myself that I'm great just the way I am eve...

It has been a whole year since I have been on a plane but I am so thankful that I took this calculated risk to get out of the cold weather. I share the challenges of traveling when disabled for a couple of reasons, the first being to remind able bodied people to help out when and where they can and to challenge others like me to take a chance to get out of your comfort zone. I can almost guarantee...

I started this podcast in June when life really felt out of control but I've since learned that if I let go and accept what is instead of trying to force the outcome I want, life becomes so much easier. I don't need to have all the answers to question what my purpose is so cutting myself a break is the first step in self acceptance and growth. Sure 2020 has been one doozy of a year but without its...

Being thankful for what you DO have instead of focusing on what you don't have is an important reminder especially at this time of year. After a rough 2020. I'm ready to really focus on improving my health starting with the right attitude of gratitude. I've spent way too much time frustrated with the progression of my disease, inadvertently focusing negative attention on my shortcomings instead of...

Death is part of life but when someone dies of the same disease I have, I am immediately reminded of my own mortality. I am really working on not being fearful, not even letting my mind go to those places of dread and anxiety especially when I'm not feeling well. I realize that I am blocking my own healing by ruminating on my symptoms actually making those symptoms worse by focusing on them. I am...

Is it possible that a little fear could actually be good for our systems? I was an adrenaline junkie in my youth and still seek out opportunities to get that rush these days although it's getting harder to do while in lockdown. I have done it but you don't need to jump out of a perfectly good airplane to get a thrill. There are ways to jumpstart your body with an adrenaline rush if you're creative...

Between the pandemic and the election I have been an emotional wreck for months despite all my efforts to stay calm. Saturday was a watershed day for me as everything finally came to a head and I spent the day laughing one moment, then crying the next. Anyone who knows me would've been surprised to see me in that state but it is a liberating feeling to really embrace my emotions fully. I'm really...

Nothing like a global pandemic with no end in sight to ratchet up underlying anxiety issues. I come across as a cool cucumber to most people who meet me because I try and keep my problems to myself but the combination of so much time on my hands and the unknowns of Covid have me really examining why I react to conflict the way I do. I was an intuitive, sensitive child who internalized the stress o...

Joni and I have been friends for close to 15 years after meeting at the MS Society’s Public Policy conference in Springfield. Like myself, she has done everything in her power to stay mobile and active and is a constant source of knowledge of all things MS.

It's taken me a minute to graciously accept and appreciate the outpouring of prayers that are always offered up for my health challenges with MS. I have come to welcome these well wishes for what they are, understanding that my resistance to prayer has more to do with my own feelings of inadequacy. If prayer can make me feel better, bring it on.

Rather than always thinking about what I don't want to happen, ie. an accident in my pants because of my neurogenic bowel and bladder, I'm trying to focus on what I DO want in my life. The best way that I have found to get out of my head and appreciate my body for what it can do as opposed to what it can't do is meditation. On this podcast, I share a little of an excellent meditation from an amazi...

Everyone who is eventually diagnosed with MS has their own horror story about how painstakingly difficult it is to even get this disease definitively identified. This podcast explains why that is the case, what symptoms to look out for and what options you have for getting to the bottom of these symptoms. Because the symptoms are so different in every person, it is critical that you don't compare...