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Life Life Rare

Stephen V. Smith

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Are you facing trials? Are physical and mental challenges weighing you down on our journey? Through his experiences with the rare disease myasthenia gravis, host Stephen V. Smith shares encouragement and inspiration as he seeks to create a life of meaning and connection. "Live Life Rare" is the companion podcast to the newsletter of the same name, which can be found at liveliferare.com. Join in the conversation as Stephen helps us discover and pursue what a rare life means to each of us.
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Living Beyond the Pain is a faith-based podcast set out to reach women who are living with women's health issues from IC, Endometriosis, & any associated autoimmune disease daily. It is my mission to empower, encourage, inspire, educate, and support women to come out of the shadows so, you can live the life God intended you to live. As I share my story I hope that women like myself will feel more inclined to share theirs. If you are feeling like no one understands what you are going through. ...
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Hello, I'm Stephen Smith and today we're going to talk about being present. Our one and only grandson turned two years old recently. He had a small party and he was blessed with many gifts from his family, mostly toy tractors, dump trucks, cars, and things like that. And while the things we bought for him were special, it was, it was really the wee…
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Hello, I'm Stephen Smith and today we're going to talk about how family is really the best medicine when you're in ICU. I can still see the images today. The noise was unnerving. The banging and the clanging reverberated throughout the dark halls of Trinity Medical Center in Birmingham, Alabama. This is where I'd been an ICU patient for weeks. It w…
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Hello, I'm Stephen Smith and today we're going to talk about grief. I've been thinking a lot about grief lately. The word often conjures up a widow mourning for her partner. But, you know, grief has a much broader definition. Grief is part of processing the loss of something important. You know, that could be your career, your health, a hometown yo…
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Hello, I'm Stephen Smith and today we're going to talk about living life inside the margins. As a child, I struck an unusual balance between grasping a lot of concepts for my age and completely overlooking the obvious. In school. When we started using ruled three-hole punched sheets of paper, I would turn in work that would get high marks along wit…
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Hello, I'm Stephen Smith, and, you know, sometimes it feels like living with a rare disease should come with a degree in project management. It's not for weaklings. It takes a lot of strength to manage a rare disease. Now, that might sound doubly strange coming from someone whose rare disease impacts their muscles. But throughout a tough year with …
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Hello, I'm Stephen Smith and today we're going to talk about when you're too tired to swing, when there's just not enough fight to get off the mat. Living with a rare disease is often challenging. Sometimes it can be downright exhausting. You know the feeling. You've hit the mat so many times you don't have the strength to lift your shoulder, to pu…
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Hello, I'm Stephen Smith, and welcome to the premiere episode of Live Life Rare. This podcast is a companion to the newsletter that you will find at liveliferare.com. So what is this work all about? I guess we could sum it up by saying that Live Life Rare is my attempt to help you discover and to pursue what a rare life means to you. Really has its…
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Hey overcomer! I know that life has a way of turning things upside down. When it seems like you have everything under control and then something happens that changes your life. Whether it's something good or not, do you ever find yourself having to readjust? Have you ever found yourself growing tired or weary because you put so much effort into tak…
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Hey Overcomers! I don’t know about you but if you’re like me, as soon as you begin to feel the weight being lifted you might find yourself wondering what’s next or now what am I supposed to do? Especially when those doctor appointments and/or physical therapy visits have ended. Then you end up having to find a way to maintain your health on your ow…
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Hey overcomer! When you think about crying, do you see it as being a weakness? Have you ever found yourself hiding your emotions because you felt that way? I know that I am so guilty of doing just that. After being diagnosed with Endometriosis and IC then, hearing all that comes along with my conditions. I tried my hardest not to show any signs of …
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Hey Overcomer! Mood swings how many of us have them? If you are anything like me they seem to come and go as it pleases. I know it is something that I have personally struggled with over the years. Living with any chronic condition can be overwhelming and can take its toll not only on your body but your mood also. The thing is if you do not find a …
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Hey Overcomer! Do you find it hard sometimes to just get out of the bed in the morning but, somehow you manage to pull yourself together, get up, and start your day? Have you ever looked at your life or your situation and wondered, what am I suppose to be doing with my life now? If you are like me from the first moment you received a diagnosis (End…
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Hey overcomers! Have you ever had someone very close to you suddenly become ill and all you want to do is help? You stop worrying about yourself when life sometimes throws some unexpected curveballs, that have you going through so many different emotions all at one time. Even though you know that stressing only makes the pain worse, you find yourse…
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Hey Overcomers! Do you believe in God or a higher being? Have you ever felt like you were loosing your faith after battling with your condition for so long? Have you ever questioned whether or not your prayers were even being answered, which only made you feel even more discouraged. I know that I felt that same way after being diagnosed with Inters…
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Hey overcomers! I pray that all is well with you and that you are staying safe. I am so excited to have you join us as our guest Dr. Alexis and I dive deeper into our series discussion on #Let's Talk: Overcoming sex and interstitial cystitis. In this episode we will open up and share some personal experiences with you, bout how I.C. affected our re…
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Hey Overcomers! In today's episode, we would like for you to join us as Dr. Alexis and I discuss sex and Interstitial Cystitis. That's right! I know if you are like me sometimes discussing how IC can affect our sex lives and being intimate with your significant other can be a little much. You may even feel that it is not necessary to talk about, bu…
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Hey Overcomers! Living with Interstitial Cystitis can be overwhelming, especially when you realize that this condition forces you to not only change the way that you eat, drink but also the way that you exercise. If you struggle with trying to figure out the I.C. diet and/ or finding it hard to exercise because it only makes your bladder/pelvic pai…
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Hey Overcomers! Have you ever been prescribed Elmiron to treat your Interstitial Cystitis? Have you ever suffered from Fibromyalgia pain? We unfortunately have and still had some side effects long after we stopped taking it. On today's episode, Dr. Alexis and I will discuss how the commonly prescribed drug Elmiron has effected the both of us. We wi…
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Hey Over-comers! So often it is easy to lose hope that we will never find any relief from the constant irritating pain that comes along with Interstitial Cystitis and fibromyalgia. If you are anything like me, you have tried countless things to help alleviate the pain, whether it is prescription medications or natural remedies. Join me on the first…
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Hey Overcomers! I know that there is so much going on in this world right now that we can become so serious and forget to get our daily dosage of the Good Medicine. It's hard enough as it is to have to deal with chronic pelvic pain due to Interstitial Cystitis, Endometriosis, and pelvic floor dysfunction. Adding more stress to our lives as you may …
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Hello Overcomers! I think that it's about time that we talk about something that can be a little embarrassing to talk about sometimes. If you have Interstitial Cystitis or any other bladder condition I am sure that at some point you found yourself having to stop what you are doing and make a mad dash to the bathroom to pee. Sometimes the urge to go…
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Hey Overcomer! Have you find yourself struggling to get out of the bed in the morning because of the pain? Do you still find yourself getting caught up in the news and getting upset? If so, I really do hope that you have made or are making the decision to block out some of the noice and take the time to focus on your health and doing what makes you…
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Hey Over-comers! I don’t know about you but it has been a struggle for me lately. There is so much going on right now in this world that can having you feeling so heavy. No matter how hard you try not to let things get to you, somehow all of a sudden it just hits you and maybe you begin to feel overwhelmed by anxiety, fear, anger, doubts, and stres…
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Hey Overcomer’s! I always believe that there is power in speaking your truth. Everyone has their own unique story about their lives and struggles with pain. After being diagnosed with Endometriosis, IC, and Infertility I felt like I was the only one that was until I was told that my great aunt had the same condition. A month before her health took …
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Hey Overcomers! Do you struggle with pelvic pain? Do you sometimes feel a sharp, dull, or aching pain in your lower back, hips, thighs, or lower abs after sitting or standing to long? I know that I have for years now. Have you ever spoken up about how you are feeling? Well I think that it's about time that we start shedding a light to the pain that…
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Hey Overcomer! I realize that with everything going on in the world right now that maybe the last thing on your mind is learning something new. You are probably wondering what’s the point. Join me on today’s episode where I will be discussing how important it is for self-love and growth. If we have made it this far while living with IC, Endometrios…
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Hello Over-Comers! Are you tired of watching movies and binge watching tv shows in your spare time? I know that I am! So, instead of spending so much time watching tv, have you thought about taking the time to learn or try something new? Just because we are in quarantine doesn’t mean that we have to stop living? Who knows you might be surprised wha…
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Now that we have started to create some kind of normalcy as we create new routines for our lives. I can only hope that you are not excluding yourself from the equation by putting what you need on the back burner. It’s so easy to do so, this I know from experience. We get so caught up with work, family homeschooling, and what’s for dinner etc. by th…
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Hello over-comer's! There has been so many changes in our world lately that can be overwhelming at times. It seems like each day that we are blessed with brings about new challenges that we have to face. Whether it's working from home, home-schooling, or the added stress from social distancing. It can all have a toll on you. I know that I have been…
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There is so many things going on in this world lately that can be so overwhelming. It seems surreal that this storm (COVID-19) has turned our world upside down. The uncertainty of it all and watching the news change everyday can cause fear, anxiety, and stress which are all things that can trigger more pain. It can trigger a flare up if you're deal…
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Can you remember a time when someone in your life stepped in and helped you when you needed it the most? So often we get so caught up with the pain due to our medical conditions(i.e. Endometriosis and IC), that we can sometimes fail to notice when support is being given. We pray that God will not only heal us but we also ask for God's help. I know …
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Can you remember a time when someone in your life stepped in and helped you when you needed it the most? So often we get so caught up with the pain due to our medical conditions(i.e. Endometriosis and IC), that we can sometimes fail to notice when support is being given. We pray that God will not only heal us but we also ask for God's help. I know …
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It’s one thing to have a hysterectomy but it’s another thing dealing with all that comes with life after the surgery. I know that the month of February is known for having love in the air. so, on join me on today's episode where I will be discussing my journey to self-love after having a hysterectomy. So let’s talk about it!…
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No one ever really wants to have a hysterectomy but for some people like myself it's the only option left. Having this type of surgery can be a difficult choice to make especially when you have never been pregnant before. Join me on today's episode where I will be discussing how my condition (Endometriosis) lead me to have to make the life changing…
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Being diagnosed with Endometriosis is hard enough to process itself but, now the doctors are saying that it not only causes pain but it causes infertility too! Hearing these words can be so overwhelming and scary at the same times, especially when you desire to have children on your own. Just when you think you have enough on your plate with battli…
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On today's episode I will continue to share with you my journey. I will be discussing how I dealt with chronic pain while trying to hide it at work. I'm sure that many of you at some point( if not currently) have gone to work while battling with chronic pain or medical conditions but no one can tell when they see you that anything is wrong with you…
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Happy Holiday's Overcomers! How often do we really ask ourselves about how our families and loved ones may be feeling about our mood swings, outbursts, and our behavior when we're dealing with Endometriosis, Interstitial cystitis, or chronic pain? I believe that it's a good idea to see things from a different perspective sometimes. Our struggles no…
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Happy Holiday's!! In this episode, I will give you an update on what's been going on with me as I continue to share my story with you. When you are dealing with pain every day, I'm sure that you have those moments when you just do not want to be bothered. . You don't want to be rude or cuss anyone out so, you start to think that maybe it's best iso…
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