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MS is messy

MS is messy

By Kimberly Albin

A closer look at the good, the bad and the ugly of living with Multiple Sclerosis. Although I will share with listeners the different challenges and solutions I've stumbled upon for coping successfully with this disease, I am in no way an expert so please consult your own doctor for specific treatment options. My hope is that other people living with MS and those who care for them will find comfort in the fact that they are not alone. We are all in this together until there is a CURE.
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Hippotherapy or horseback riding for improved health

MS is messyAug 31, 2021

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Our Healthcare System is Broken

Our Healthcare System is Broken

I know I’m not the only one who is aggravated with trying to navigate our shoddy healthcare system. Anyone who doesn’t feel this way has clearly never been really sick having to depend on doctors and insurance to do the right thing. It’s bad enough to be sick but to add insult to injury, healthcare now is not set up to benefit the patient but to further line the pockets of big pharma but the good news is together we can make a difference by using our voices to fight for our rights to get and sustain our well-being in a world driven by profits.
Mar 22, 202405:47
Cancer scare

Cancer scare

A cautionary tale of facing a serious diagnosis while already living with the equally serious and daunting reality of MS. My hope is that listeners will hear something that might help them when and if they get some other illness. It doesn’t seem fair but having MS won’t protect you from getting sick with something else.
Jan 25, 202411:19
MS is tough but I’m tougher.

MS is tough but I’m tougher.

Trips to the gym have gotten harder and consequently less consistent than I’d like but a nice comment from a stranger recharged me. I didn’t ask to be an inspiration but if my situation makes others feel motivated to keep their body strong, then so be it.
Oct 23, 202303:15
Overachiever Withdrawals

Overachiever Withdrawals

After 3+ years of producing the MS is Messy podcast I thought it was time to hang up my mic but a nice woman who I don’t know personally sent me a heartfelt message about how much she was getting from my podcasts. I always said if I could help just one other person dealing with MS, then the effort was worth it so I will continue for as long as I have topics to share. Thanks for listening and sharing with those who might benefit from my message.
Oct 03, 202303:46
Home elevator

Home elevator

After years of talking about our home's lack of accessibility. we finally decided to install an elevator as stairs have become too challenging for me to manage some days. This free standing lift designed by Stiltz is the answer we were looking for when we ultimately agreed that our home, community and friends are too important to us to leave. We realize that this expensive home modification is not feasible for most but after crunching the numbers, it's cheaper than pulling up roots and relocating to a single level home or at least one with a master on the main floor. I'm also excited that my aging Mom will find the elevator helpful as well when she comes to visit. Life is hard enough without having to struggle to get up the stairs in your own home so I'm extremely grateful for this modern marvel that will make my life easier in the end and to the end.

Jul 24, 202303:14
Where there’s a will there’s a way. Traveling with a disability.

Where there’s a will there’s a way. Traveling with a disability.

All the planning in the world won’t prepare a disabled person from running into challenges while traveling anywhere but especially oversees. After a magical family vacation to Italy, I learned firsthand how hard it is to travel but I’m glad I did it.
Jun 13, 202310:44
June 13, 2023

June 13, 2023

Jun 13, 202300:24
Is MS a life sentence? The short answer is NO.

Is MS a life sentence? The short answer is NO.

Part 2 of my conversation with Dr. David Bilstrom, MD, Director of the International Autoimmune Institute & Bingham Memorial Center for Functional Medicine who gives us concrete answers on how people with MS can reverse and even prevent this disease from progressing through simple lifestyle changes.
May 12, 202318:46
Part of my interview with Dr. David Billstrom Director of the International Autoimmune Institute

Part of my interview with Dr. David Billstrom Director of the International Autoimmune Institute

My conversation with Dr. Billstrom from the Bingham Memorial Center for Functional Medicine is extremely informative for anyone with an autoimmune disease specifically MS. You will hopefully feel empowered to start making positive changes in your own health journey immediately with his tried and true advice for slowing and even reversing your MS symptoms.
Apr 30, 202328:49
Conversation with Dr. David Billstrom, Director of the International Autoimmune Institute & Bingham Memorial Center for Functional Medicine

Conversation with Dr. David Billstrom, Director of the International Autoimmune Institute & Bingham Memorial Center for Functional Medicine

I had the unique opportunity to speak with Dr. David Billstrom, a longtime, respected functional medicine doctor who has made it his life's goal to educate and treat those of us living with an autoimmune disease. In this part 1 of a 2 part series Dr. Billstrom shares his belief that all autoimmune disease can be prevented and /or reversed with some simple lifestyle changes.t You will hopefully feel as empowered as I do to start making these changes immediately especially if everything you've tried up to this point hasn't really made much of a difference. Wherever you are on your health journey, I think Dr. Billstrom's advice for slowing or even reversing your MS wll be life changing.

Apr 29, 202300:43
Maintaining a healthy diet is crucial for people with MS

Maintaining a healthy diet is crucial for people with MS

After a recent visit to my primary doctor I learned that I'm at risk for heart disease if I'm not more careful with my diet. I decided to heed this warning since my Dad died of a sudden heart attack at the age I am now. I was pretty lax during the holidays with my food choices so I feel confident I can get back to healthier eating mainly because I don't want to take medicine for elevated blood pressure and cholesterol for the rest of my life.

Jan 31, 202303:56
New Year, New opportunity to learn and grow

New Year, New opportunity to learn and grow

After reading Michelle Obama's most recent book, "The Light We Carry" where she describes how her Dad's MS made her feel helpless and afraid aa a young person, I realized and immediately felt guilty for what my kids are carrying into adulthood themselves. I decided the vulnerabilities and lack of control they may feel at times will ultimately serve them in their relationships with others reminding me that in yet another way MS has been a gift to our family.

Jan 03, 202305:25
What are you grateful for?

What are you grateful for?

As Thanksgiving approaches I can't help but reflect on my many blessings, some that I may not have even recognized if not for being diagnosed with MS. This disease has taken so much from me while at the same time giving me gifts I never knew possible. Gratitude is just an attitude, one that will make you happier if you practice it.

Nov 17, 202204:52
Pain, what do we do with it?

Pain, what do we do with it?

Pain and I are old friends after years of living with a disease like MS but I'm well aware that it could always be worse. I try and focus on activities that make me forget about the pain while doing my best to manage my ever increasing symptoms. Pain is just part of life so learning coping strategies is your best option for living your best life.

Oct 14, 202203:53
Listen to your body and not that bully in your head.

Listen to your body and not that bully in your head.

After taking the summer off to recharge and readjust my priorities, I still struggle with not feeling enough. This society places so much emphasis on being active and busy but sometimes MS prevents me from doing all I would like to. I've been working on true acceptance, not conditional, which only allows me to feel good about myself if I've ticked off enough on my to do list. It's ok if I don't get as much accomplished as I think I should, in fact, taking care of myself has become a full time job and that's ok too. I'm learning to release the attachment I have that keeps the illness in place while working on getting and staying as healthy as possible, a tough balancing act.

Sep 12, 202205:14
We all have 2 choices in life: to Give up or Fight.

We all have 2 choices in life: to Give up or Fight.

While trying to keep up with a busy schedule I neglected to put myself and my health first and I'm paying for that neglect. I am refocused and re energized to make my health a priority because if I don't, MS will take over which I am determined to prevent. As they say, "I have MS, it doesn't have me." It's a whale of a disease but with effort and attention to getting stronger it is manageable.

May 26, 202206:27
WALK MS 2022

WALK MS 2022

For 20 years now I have been participating in WALK MS, the largest National Multiple Sclerosis Society fundraising event of the year that has always been so crucial in helping people like myself who are living with MS. The money we raise goes towards helping people dealing with this costly disease while also funding the all important research that will finally END MS once and for all. If you haven't already but would like to donate a little something towards this worthwhile cause, here's the link to my personal fundraising page. 

https://mssociety.donordrive.com/index.cfm?fuseaction=donordrive.participant&participantID=94206

Thanks for your support.

Apr 28, 202204:04
Thank God for steroids

Thank God for steroids

I've been MIA for awhile so today's podcast explains why. I am so thankful today for a good doctor, helpful meds and the support and encouragement of family and friends which are all important to feeling better. Fighting this disease never stops but with this most recent steroid course, I am feeling up for the battle again. Don't ever give up the hope of feeling better because there is always an answer if you look hard enough for it.

Mar 13, 202206:05
Mom

Mom

After my recent trip to Arizona to visit with my mom, I learned alot about how each of us are handling our own MS journeys. Having been recently diagnosed with MS, my mom still leads a very active life which was nice to see. I also realized while I was there how many short cuts or energy savers I employ on a daily basis, some of which I discuss in the podcast.
Feb 17, 202204:46
Miracle drug or temporary fix?

Miracle drug or temporary fix?

My Mom turned me onto a little pill that has literally changed my life so I needed to share that news with you.I had resigned myself to living with this annoying and painful symptom but for now, this medicine is working great and I am beyond thankful. Just when I'm ready to give up hope of feeling better, something like this comes along but the trick is to never give in or give up. Be your own advocate because no one but you knows what you're dealing with on a daily basis.

Jan 14, 202204:26
Making the most of a bad situation

Making the most of a bad situation

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 this holiday really filled me up and I don't want to go back to quarantining.

Dec 29, 202103:26
MS isn't contagious.

MS isn't contagious.

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.

Nov 27, 202103:11
Life Hacks: Necessity is the mother of invention.

Life Hacks: Necessity is the mother of invention.

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 found that being creative in meeting your needs is necessary if you want to continue pursuing a rewarding and involved existence. 

Oct 21, 202106:23
Accessibility is a BIG problem.

Accessibility is a BIG problem.

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 accepting the status quo and I invite you to also say something when you see that a business is inaccessible. 

Sep 21, 202103:32
Hippotherapy or horseback riding for improved health

Hippotherapy or horseback riding for improved health

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  gait, coordination, balance, cognition issues and the lack of confidence that can go along with having MS.

Aug 31, 202104:11
lessons from the Olympics

lessons from the Olympics

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 ensure my own health and safety.

Aug 05, 202103:54
Summer heat and humidity

Summer heat and humidity

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 to stay as cool as possible.

Jul 12, 202104:44
Anxiety

Anxiety

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 realizing I can't get through this alone....none of us can and it's alright to admit that.

Jun 07, 202104:50
Purpose in Life

Purpose in Life

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 first diagnosed, I've spent my life since I stopped working outside the home trying to give back to the MS community in whatever way I could. Right now I am really enjoying podcasting while hopefully helping others who are facing this or any other health crisis of their own.

May 16, 202105:41
Will this one work?

Will this one work?

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 reaction to the drug if any. Although I have plenty of trepidation about this new medication, I am also curious to see if it will alter what feels like the quickening of my MS progression. I have a busy, full and enjoyable life for the most part and will do whatever I need to continue living it to the fullest including taking scary drugs with possible life threatening side effects.

Apr 26, 202104:43
Fundraising season stresses me out

Fundraising season stresses me out

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 ever because I HATE asking for anything but I guess I HATE this disease more so as long as I'm still able I will do my part to continue the funding so necessary to finding a CURE for this disease once and for all.

Apr 08, 202106:03
True healing comes from the inside

True healing comes from the inside

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 going to let health flow through me and love myself back to better health.

Mar 15, 202104:35
Botox is a miracle drug

Botox is a miracle drug

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 but can make life miserable for the person living with it.

Feb 27, 202106:25
Comparison is the Thief of Joy

Comparison is the Thief of Joy

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 even on days I don't really believe that.

Feb 17, 202104:11
On the Road Again

On the Road Again

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 that the hassle of traveling is well worth the effort. Besides, it those of us with disabilities don't take full advantage of opportunities that others take for granted then there is no need to make the world accessible for us.

Feb 09, 202105:57
My Messy Little Life

My Messy Little Life

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 challenges, I might never have come to a clearer understanding and appreciation of what makes me tick. Without the bad things that happen in life, I would never really appreciate all the good and for that I am eternally grateful for 2020 vision.

Dec 29, 202005:37
Gratitude

Gratitude

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 manifesting what I Do want, a healthy body. I'm a long way from getting the results I want but I'm on my way filled with gratitude for all the friends and family along for the ride.

Dec 21, 202004:08
Squiggy died, am I next?

Squiggy died, am I next?

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 trying to live in a place of ease and acceptance that I am doing the best I can instead of fighting and resisting my MS every step of the way which may be keeping me in this state of illness. I'm a strong believer in what we put our attention on expands so I need to visualize myself healthy before that will actually begin to happen.

Dec 07, 202006:06
The Role of Fear in Our Lives

The Role of Fear in Our Lives

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. My advice is to always push past your fear so you can live your best life.

Nov 22, 202005:09
What to do with these emotions.

What to do with these emotions.

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 going to try and stay in that state of emotional honesty going forward because keeping it all in only makes me sicker.

Nov 10, 202003:49
Anxiety

Anxiety

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 of my family dynamic. I would guess that many others with MS or any other autoimmune disease can look back on their childhoods to make some critical connections between how they were raised and the symptoms they now experience. I don't believe it's ever too late to be a better communicator with my friends and family so I will continue to question why I get emotionally charged when challenged so I can continue to learn and grow.

Oct 29, 202007:27
Catching up with my friend

Catching up with my friend

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.
Oct 14, 202026:54
The Power of Prayer to heal

The Power of Prayer to heal

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.

Oct 05, 202003:33
What we put our attention on grows

What we put our attention on grows

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 amazing meditation teacher, Emily Fletcher, who founded the Ziva meditation community. For years I thought that I lacked the focus to meditate "correctly"but Emily has made this life changing practice easy and accessible most notably because she stresses  that its ok if your mind wanders, something that always happens to me. I feel like I have more time on my hands than ever before yet my mind races at all hours of the day and night with self doubt and recrimination. Meditation helps me appreciate this broken body I have allowing me to appreciate my life even while dealing with exasperating MS symptoms.

Sep 29, 202011:37
Why is MS so hard to diagnose?

Why is MS so hard to diagnose?

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 yourself to others with MS. My recommendation is that you do take your symptoms seriously and do not get discouraged in what for many is a long and arduous journey.

Sep 06, 202004:33
Saving the best for last

Saving the best for last

On this episode, our eldest Erin and I discuss how my MS has impacted her both positively and negatively. As with all these conversations with my close family I have learned so much about their fears, frustrations and feelings from dealing with a family member who is sick. These conversations are long overdue and probably should've been discussed in a therapist's office years ago but better late than never, I guess. I am so thankful for this opportunity to put a podcast out there that might help other sick people gain  better understanding and compassion for what their family members might be going through. We have a tendency as people with a disease to forget the impact our illness has on the ones we love because we become so self consumed with getting and staying healthy ourselves.

Aug 25, 202020:20
How to raise an empathetic child

How to raise an empathetic child

Nature or nurture? I've always wondered how my MS has impacted my family and my children in particular. In this episode, I interview our youngest son Matthew who has never known me without this damn disease as I was diagnosed shortly after he was born. He is one of the most empathetic, caring and responsible young men I have ever known. I would like to believe that he was born with all those traits but our conversation makes it clear that me having an illness kind of forced him to grow up more independently while he also had to be aware of my daily challenges, helping when and where he could. Matt admits in this podcast that he has taken on the role of caretaker in all his friendships and relationships too while acknowledging that he doesn't mind being in that role. I am beyond proud of the sweet, empathetic man he has become and thankful to MS for helping Matt see how important it is to help those less fortunate than himself.

Aug 16, 202011:51
Chat with a Friend

Chat with a Friend

In this episode, I sit down with my friend Eileen who was diagnosed with MS just a few months after I was 23 years ago. Eileen was one of the very first people to join my MS support group all that time ago and we became instant friends having so much in common including being diagnosed right after giving birth to our 3rd child. We both have a positive attitude despite all the trials and errors of trying a multitude of treatment options that didn't work. We share our trial and tribulations as we navigate this bumpy road of MS together because together we can do anything.

Aug 10, 202030:49
Life is for Living so Get to It.

Life is for Living so Get to It.

In this podcast, I discuss the importance of a positive attitude when dealing with a life-changing disease like MS. Although we have every right to, I have never met another person with MS who didn't make the most out of a bad situation. I am proud of my fellow MSers who are both resilient and resourceful, staying positive in the face of immense challenges. Maybe it was my destiny to get MS all along so that I could help others struggling with illness see how very precious their life is and how important it is to keep on keeping on.

Aug 02, 202006:36
My special caretaker

My special caretaker

My husband Bruce is the definition of "for better or for worse" because for the last 23 years since my MS diagnosis, he's had to cope with the worst on a daily basis. I really appreciate how he handles everything thrown at him with grace, humor and a determination to keep our lives running smoothly. I am not sure what I would do without his love and support and are beyond thankful for his quiet tenacity and love everyday. My husband is not a big talker but he is a doer, taking care of me and all of us with unbelievable strength. He is my rock and I love him beyond words.

Jul 26, 202011:21