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There’s a flurry of weirdness going on in my brain

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When people try to rationalize or downplay my fatigue, it can hurt. Many times it seems like the more I try to explain how tired my tired is, the more they try to fit it into their little perception box. Understandably so, they aren’t the ones living with it, but sometimes I just wish I could give them a taste of what my fatigue actually feels like. Maybe then they would get it.

I spent my night with a random flurry of weirdness going on in my brain. My thoughts had no reason and made no sense. I have an overactive brain that just won’t shut up especially when night comes. It just feels so uncomfortable having a torrent of random weird thoughts and questions hitting me every time I try to sleep. I have realized the questions are so odd that most of them are unsolvable.

To go with my busy brain, my body is filled with pain, dizziness, breathing difficulties, tossing and turning, and muscle spasms all disrupting my comfort. A night of sleep… I wish!

But did any of my night time questions or thoughts come to fruition? No. When this happens I pick up a notebook and pen to write everything down. I can guarantee you that when I read them later I’m always thinking omg, these thoughts are so irrational. What the heck is that all about. Then I just let it go. I don’t need any stressful thoughts to complicate my already complicated life.

And because I’m so tired even after a night in bed, the thought of having to get myself dressed and looking presentable in the morning wears me out. If it’s not messy hair, pajama pants and t-shirt doable, it’s too much work.

I appreciate when a friend asks me to do something, but then is ok if I end up declining their invite because my body is simply too exhausted to function, even if it ends up being a last minute change. No one should ever have to spend time defending how they feel and why.

The world is buzzing by at hyper speeds and it tries its best to force me to keep up with the pace it sets, but MS has given me a slower pace that requires pitstops and multiple times of rest. Most of the buzzing about that the world wants me to do isn’t really important anyway.

I choose to hold onto the things that really matter in life like great friends, savory coffee and extra time to stay in bed. My bed is my friend and keeps me company even in the middles of the day when I need fluffy pillows and moments of quiet. I like friends like that.

Why Does Your Brain Ask Weird Questions When You Can’t Sleep?

Something bizarre happened to me

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Sometimes bizarre things happen with multiple sclerosis just because it exists. After all, we live with a strange, unpredictable disease that seems to have a mind of its own. At times I do things so strange that blaming it on MS isn’t even fair. Out of everything that has happened I blame my right hand for it all. My right hand is more of a paperweight than something of use anyway. Between tremors and weakness, it’s useless.

Some of the really strange things that happen need to be discussed more often so more people are aware of the challenges we face.  The strangest symptoms I’ve dealt with include:

  • Feeling as if an internal earthquake is taking place inside my body.
  • Experiencing ringing in my ears that sometimes is louder than a crowd at a ball game.
  • Feeling as if water is dripping on me when I’m no where near a faucet.
  • The unrelenting crushing feeling of the MS hug which is more like a tight girdle wrapped around the rib cage or a boa constrictor that won’t let go.
  • Feeling as if food is stuck in my throat when I haven’t eaten anything.
  • Involuntary movements of my body like me accidentally kicking the doctor.
  • Abnormal sensations on my skin such as burning, pins and needles, and even itching that nothing seems to be able to alleviate.
  • Feeling an electrical shock sensation through my arms and legs when I tilt my neck downward.
  • Feelings of dizziness and being off-balance which accompanies nausea.
  • Experiencing emotional incontinence which brings on uncontrollable laughter or tears.
  • Dealing with 3-D illusions like when an object is moving straight towards me but it appears to be swerving and shifting in its path.

I have also noticed a strange phenomenon since having MS. I don’t have a clue if it’s actually related to MS in any way as I’ve never heard it talked about, but I thought I would mention it so others who are dealing with the same things don’t think they are going crazy.

When I get something as simple as a pimple on my face (it’s not just for teenagers, you know), it will take a few months to fully heal instead of days as in times past. I’ve noticed the same thing happens with cuts too. I cut my finger in the kitchen and after a month it has healed aside for a slightly puffiness. I’m just glad my hand is numb and I can’t feel any pain that is going on inside. It’s healing at its own slow pace. Bizarrely slow, I have to say.

It could be due to some of the medications I take. I take things for muscle spasms, pain, dizziness, help with sleeping, and temors. A daily cocktail along with a slew of supplements and vitamins. It’s crazy because before MS I didn’t even take aspirin or cold medicine, now I have a rainbow collection of pills that would put a package of Skittles to shame.

When I was first diagnosed with MS I was taking a med called Rebif. I had to give myself inter-muscular shots 3 times a week, similar to those taking Copaxone. Those shots would bruise me so bad that over time I looked like I was being abused. I would have bruises on my thighs, arms and belly and they would take forever to heal. But the med would end up making me feel worse than MS actually did. I was medicating myself for the side effects of the medication. Such a vicious cycle that I’m glad ended when I stopped taking it. I would rather let MS progress naturally than feel miserable trying to medicate for a hopeful slower progression of MS.

Keeping a healthy diet helps to manage some issues, but it won’t rid the body of everything MS. I’m truly overjoyed for those that are able to fully manage MS by the things they eat and the supplements they take, but it’s important for people to understand that not everybody has such great results. Each of us is unique with our own cellular makeup and our own responses to diet and medications.

If you face slow wound healing, know that you aren’t alone. I’m sitting here with a puffy finger and a pimple on my chin to prove it happens.

It’s necessary for a person on a journey with MS to be able to recognize why coping with their illness is difficult. Knowing how crazy MS can be can help ease the burden, even if only for a little while. You got this.

Once diagnosed with MS, you find out who your real friends are

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Life was good before multiple sclerosis. I had great friends. We would spend time together on the weekends going out to eat or bowling, and in the summer we would always plan hiking trips through the mountains. When MS became a part of the picture, those nights out and trips dwindled. It got to where I wasn’t even being invited to dinner anymore, they would just go without me. It made me downright mad to be excluded like that. I wanted to scream at them saying, “I have MS, I didn’t die.”

Amazingly, you discover who your real friends are once a challenge arises. They will either stand by you and hold you up or they will walk away dropping you like a hot potato. If they choose to walk away, let them. You don’t need anyone pulling you down. MS is doing a good enough job of that already.

For those friends wanting to understand a little more about how life changes for a person with MS, I’ve listed a few things here. Maybe they will help you to understand MS and help you to be a better friend in the process.

1. Sleep is important to us.

We need to go to bed early. When I say need, I mean NEED, and when I say early, I mean EARLY! Our bodies wear out faster because they are working harder to do just about everything. The simple act of walking across a room exerts twice the energy of a healthy person doing the same thing, if not more. We have to think to walk. It doesn’t come naturally like it does for you. Every step includes a thought process about how to pick up the foot and where to put it back down. Now, add to that all the other things you do in a day. Many times we will be in the bed before the sun goes down, which means we may not be able to have a night out with the gang or stay up to watch a late night movie on the couch. When we do sleep, the time is sporadic which makes us even more exhausted the next day. Sleeping through the night without bathroom breaks and being awaked by pain is a rarity. So, if we say we’re tired, we are “I haven’t slept in days and every muscle, bone and cell in my body aches” tired.

2. Schedules are planned around treatment and sleep.

No longer are we able to plan ahead for a special event. Our meds and sleep patterns changed that the moment MS became a part of our life. If we are out enjoying the night and have to leave early, don’t get mad or think we are being unsocial for being the first person to slip out unnoticed. When our bodies are screaming at us in pain, and our exhaustion has hit an all time high, we would rather be at home in the comfort of our PJs so we can hibernate on our own couch. This way, if we have a moment when things get too intense and we shed a tear or two, we don’t have to explain what’s wrong for the hundredth time. Just know that if we ever say “no” or have to cancel last minute plans, it’s not because we don’t want to be a part of what’s going on or because we are mad at you. Our bodies just won’t let us join in.

3. “Just come over and sit” is not as easy as it sounds.

For one, we have to get ourselves dressed and make ourselves presentable which exerts energy. Then we have to drive through traffic to get to your house which can be dangerous, especially if we have trouble with vision, numbness in our legs, dizziness or fatigue. So, although coming and just sitting at your house sounds simple, it’s not. It becomes even more difficult when we have to leave and drive back home, because by that time we are so tired that driving can be scary and unsafe. It would be so much easier if you were to come to us. And not a loud party kind of come over either. There is a time and place for that, but most of the time we just want to know you care. Having a cup of coffee or tea for an hour or bringing lunch over would be welcomed and help brighten our day.

4. Simple things suddenly become difficult.

Laundry, cleaning, cooking, washing the car, vacuuming, making the bed, going to the store: they all sounds like simple things, right? But they’re not. All of a sudden we find ourselves struggling just to make the bed in the morning. What normally would take 10 minutes becomes 45 minutes. Our energy gets used up fast and our muscles weaken quick. All those things normal people do, we struggle with. We look around the house and want to cry because we have had to neglect things we normally would take care of. You know what would be the greatest thing of all? For you to volunteer to come and help us tackle the laundry or the scrubbing of the toilet.

5. We get tired of explaining the same thing over and over.

We understand that you don’t get it and that much of our pain you can’t see. We realize you can forget from time to time that we are hurting and suffering on the inside. But please, as a friend who wants to be a part of our lives, take the time to read up on MS so you can be informed. Be our biggest supporter: the person that stands up for us and fights for us when others point and stare or are saying stupid things and being rude. Hold our hand through the bad days and help us find our smile when we lose it.

6. Don’t judge us for our choice of treatment.

We are the ones living with MS and, surprisingly enough, we have researched more in depth about MS than most people because again, we are the ones living with it. We would like nothing more than to one day wake up and hear that MS is cured. Until then, we have decisions to make about a treatment plan. Those decisions are ours to make, not yours. Please don’t judge our decisions. Treatments are a trial and error kind of thing. They won’t cure us. They just delay the progression. Let us try what we feel is right for us, and if it doesn’t work, help us to make the next big decision for treatment. Leave the judgements and finger pointing elsewhere. We don’t need condemnation or criticism. We need support and care.

When it comes to friendships, we need them, we want them, we long for them, but we won’t be able to be the friend you have known in the past and we need you to be okay with that. MS has caused our lives to change. We would love it if you would help us through that change by changing with us. We know it’s not easy. Boy, do we know it’s not easy. But know that living with MS isn’t easy either.

True friends are a rare thing for the chronically ill. It takes guts to stand with us. Thanks for having the guts to stay.

I have lots of “almosts” in my MS life

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Lucy and Linus were talking to their coach, Charlie Brown, at home plate. Kicking the dirt in disgust, Charlie Brown said, “Our team is no good. We have lost every game. There is nothing good about our team!”

“But,” protested Lucy, “Schroder almost hit a home run. And we almost won a couple of games. Once we almost made a double play. Don’t forget that you almost made it to first base before the ball, once.”

“If it’s any consolation, Charlie Brown,” interrupted Linus, “we did lead the league in almosts.”

“Almosts” are part of everyone’s life but living with multiple sclerosis our almosts are a bit different. Some almosts work to our advantage and are even celebrated.

For example, there are times when we almost slip getting out of the shower. Yeah! Or, we almost have an accident while driving our wheelchair… oops. Or, we almost choke while swallowing food, air or saliva… yikes. Or, we almost fall going up the stairs… yes, it can happen.

But sadly I have actually had every one of them happen to me and they can be really scary to deal with. It takes a lot of strength to hang in there when everything around you is going wrong and destroying your hopes and dreams.

Then there are the “might have been” occasions like when we almost walk across a parking lot without needing help but fall instead. Or other might have been occasions when we almost are healed by taking supplements and eating a special healthy diet. You know, the infamous unknown cures that heal every illness on the planet. According to those hacks we should be healed already.

Those things are like almost but not quite occurrences. According to Websters Dictionary, almost means “very near but not quite”.

So, the way I see it the “almosts” and “might have beens” are the same as it never really happened at all. I have a lot of almosts and might have beens in my life with MS but I don’t let that stop me from living life on my own terms. Not according to what other people think it should be but how I choose to live it. How about you?

You can’t control multiple sclerosis

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Living with multiple sclerosis isn’t as easy as some people make it seem. It’s not like I can will my body into behaving or talk my muscles into working. Mine seem to have revolted all on their own. I don’t need anyone to pull me down with their words. MS is doing a pretty good job of that on its own.

I have days when I find myself dealing with physical symptoms like tremors, pain, weakness, numbness, vision problems, and muscle spasms. Enough to cause me difficulties but not enough to stop me from continuing on in my day. Then there are times when everything becomes so intense, when the pain and weakness grows so deep, that it bleeds over into every part of my life as it tries to get its grubby little hands on things like my thoughts and emotions.

One thing I have learned over time is that MS is not a disease you can control or keep to yourself. We try though…don’t we?! I know I do. I try to keep the effects of MS neatly contained in its own little space hoping to shield myself and those around me from its impending destruction, but it seems the more I try to contain it, the more it spills out. It’s kind of like trying to rake the leaves in my yard into a pile on a windy day. What a futile task. No matter how hard I try, they just won’t stay where I put them.

Regardless of what anyone thinks, we need people, especially when living with a chronic illness and even more so at this time of year. It’s a time when the weather is unforgiving. It has this sneaky way of causing our nerves and muscles to go a bit haywire as the hot temperatures creep into our lives limiting what we can accomplish on our own. Humidity is the worst.

As the summer progresses more and more cookouts take place. It’s amazing the things we have to consider when receiving an invitation to an outing. Is the location accessible? Will there be adequate air conditioning to keep me cool? Will my body play nice? Will I be able to manage the traffic? Will my finances be stretched too thin, above and beyond any past due medical bills? Will people understand my decision to stay at home or that I had to cancel plans last minute? Will they even invite me in the first place?

Real friends get it though. I was once told, “You can count your true friends on one hand and sometimes on one finger.” How true is that?

I know it’s not always easy to do, but be determined to fill the days ahead with the love of a few close friends. It really does brighten the dreaded summer days. If you can’t get out, invite someone over for a special movie night complete with pizza and popcorn or even have a Zoom meeting with people you haven’t seen in a while. Sometimes something as simple as a text message back and forth with someone you haven’t heard from in a long time can give you a smile that lasts for days.

From one friend to another: do your best to find joy in the steamy hot days and always remember just how absolutely, positively, incredibly amazing you are. I sure happen to think so.

We are living with a forever disease

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We live in a messed up world in a messed up body with a messed up disease, so when things get messed up around us…why are we so surprised? Don’t let the messes mess up your day. One thing to keep in mind is that we are living with multiple sclerosis, a forever disease, as crazy as that may seem.

There is nothing as of yet to rid the body of MS. Yes, you can manage the symptoms and sometimes even make them appear as though they don’t even exist. But don’t kid yourself. You still have MS even when it’s hidden. Be mindful of your body and what it’s telling you. Only you can hear it. Sometimes it will be annoyingly screaming at you to pay attention. Please stop and listen.

Growing up in a family of seven, we had our fair share of messes. I loved baking and would enter contests from time to time. As a ten year old I could make a killer lemon cake. It won me a blue ribbon more than once.

I was taught to clean up as you go. I had fun as I gathered all my ingredients; measured out what I needed; sifted, mixed, cracked, whipped, poured, and baked. The entire time I was also cleaning up, putting away, rinsing and washing to keep from having too big of a mess. By time the cake was in the oven, I was ready to watch it rise.

Now my oldest brother, that was a different story. You let him loose in the kitchen and it would turn out looking like a tornado hit it. He had no concept of order, he just had fun. He could make some amazing oatmeal cookies, scrambled eggs and even sirloin steaks, you just didn’t want to go in the kitchen afterwards. It was messier than messy. It was what I called confused chaos. It would take him time, but the kitchen would eventual get cleaned up and looking just as amazing as his food tasted.

We both had messes to face, we just chose our own way of dealing with them. I would tackle things bit by bit as they came along and he would wait to attack them all at once. We both had fun, we both had messes, but in the end we both had something amazing.

It bothers me when people come along trying to dictate how to live with MS as if the mess we find ourselves living in has a one stop, one way fix. What makes people think they’re the experts at living with a chronic illness just because it works for some, never for all? If I choose to follow a certain diet, something different than you…am I wrong, or are you wrong? If I choose to not take meds and you choose to take something…am I wrong, or are you? If I chose to visit a doctor and you chose to stay home, who’s right and who’s wrong?

Each person is different with different bodily makeup, different cell structures, different DNA, different problems, really different everything. What works for one won’t necessarily work for another. To be honest, one drug may harm a person as well as help another.

You see, we each have our own lives, our own messes, our own chaos and our own fun. No one is right or wrong in how they go about living with MS. There are always things we could do better and new things to learn, but NEVER should we act as if we are the guru of all knowledge and wisdom regarding something as unknowable as MS and the human body, because we aren’t. It’s just that each of us deals with the mess in different ways.

Don’t let anyone make you feel bad because they chose something different than you. You be you and do what you know you need to do for yourself. You know your body better because you are the one actually living in it. Be unique, be crazy, make a mess, try new things, make mistakes, and even succeed…but most of all, hang onto the smiles around you and enjoy living.

There’s only one you and only one today, but there is a potential for lots of smiles to help you through this messed up life we have. Choose to find the smiles.

Vision problems and multiple sclerosis

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My eyesight has been giving me more and more trouble lately. When I wake up in the morning it takes me more time than usual to properly focus. I will prop myself up in bed and have to rub my eyes countless times just to see straight.

At that time of the day don’t expect me to be able to read a text message, email or anything else for that matter, without difficulties. If a text message is not responded to for more time than what was expected, don’t hold it against me. I will eventually get to it… by next year.

At the age of 12 I started wearing glasses and hated all the difficulties just trying to keep them clean or to not fog up in humid weather. Twenty years ago I got Lasik surgery to correct my vision. According to the Ophthalmologist, now my eyesight is 20/20. There’s a lesion in my brain that is causing me to have some blurred vision in my left eye but other than that, all is well there.

The problem for me is that the muscles in my eyes are weak and causing me to see a shadow beside each letter. It’s called double vision. It’s like a copy of the word is overlapping itself but slightly offset making a confusing mess. Even making the text display a larger scale helps to read clearer but doesn’t remedy the issue.

Just writing this post is cumbersome and takes more time than usual to complete. Of course I have become a hunt-and-peck typist unlike in my glory days where I could type over 75 words a minute. Between eyesight and numb fingers, I feel helpless with the internet.

And don’t even talk about telling me to use a speech to text app. The apps always misunderstand what I’m saying and interpreting it with a bunch of nonsense. Then once I correct the word errors, the punctuation takes extra steps to properly add. It’s a no win situation.

I have noticed when I’m watching TV I tend to close my left eye in order to view things clearer and to help keep me from getting dizzy. Yes, my eyesight makes me dizzy at times. Who wants to be on a rollercoaster ride while watching a movie? Not me! Thus the one eye method works. It’s like my eyes aren’t tracking exactly one with the other as they should.

My advice… relax and be grateful for whatever sight you have. Recognize the challenges that show up and look for the bright side through it all. Appreciate the adventures you may encounter along the way for there will be many.

To Meme or not to Meme? That’s the question!

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I’ve put together a collection of my most wonderfully random and entertaining images and memes to keep in one convenient place. It’s a work in progress but hopefully it gives you a laugh and something to think about along with something to share with others to raise multiple sclerosis awareness.

I hope to add at least 2 to 3 images a week so makes sure to come back often. You can find the memes easily from the websites by following the link labeled “MS memes” in the top menu bar at positivelivingwithms.com.

When I first started Positive Living with MS I came across people offended by my sarcastic yet pointedly accurate MS images on topics that were a bit hards to talk about. As time passed the narrow-minded, prudish followers went away. I still meet people that don’t like my use of humor to talk about my life with MS. I find that in the humor there are some heavy subjects that will bring you to tears… but it’s all a part of a life with MS that needs to have more awareness.

As I’ve said many times, it’s better to laugh than cry about what we deal with. It makes the days brighter, the load lighter and the pain easier to handle, both emotional and physical. So laugh and don’t feel bad for it. It does a body good.

MS Facts Memes

Humor Memes

Inspirational Memes

MS Symptom Memes

 

Chocolate… is it good for multiple sclerosis?

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It’s been known for years that flavonoids in cocoa help fight fatigue. These chemicals possess anti-inflammatory properties that may be especially beneficial for people with multiple sclerosis. I know that may sound strange to you, but cocoa (chocolate) has been studied for just that purpose. Amazingly enough case studies show that eating cocoa does just that.

Let’s face it, no matter how you enjoy it — as a candy bar, in a hot drink, drizzled over ice cream — chocolate brings joy. It’s a wonderful flavorful treat. Now, I’m not talking about melt in your mouth milk chocolate, but dark chocolate is what has most of the health benefit for our bodies. Dark chocolate has between 50% and 90% cocoa solids. The higher percentage the better.

I don’t know if it’s because dark chocolate has a slight bitter taste or because you need to ingest it slowly to actually enjoy it, but I happen to think it’s a great alternative to pharmaceuticals. I have always said that the day after a chocolate filled holiday is my favorite day because chocolate goes on sale. I don’t know if it will be on sale after Valentine’s Day this year as in times past, but any discount would be welcomed due to the high price of food around the world today.

Results showed in the cocoa study that participants experienced a 45 percent improvement in fatigue. In addition, the high-flavonoid group was able to walk farther than those in the low-flavonoid group during a six-minute walking test. They also reported less pain.

MS is a challenging disease, and it requires innovative approaches to find ways to prevent, diagnose, and treat it. Could chocolate make multiple sclerosis fatigue better? Only time will tell but I welcome the challenge.

MS bladder issues, when it rains it pours

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I don’t like days filled with constant surprises and uncertainties but living with multiple sclerosis is going to have its share of unpredictability. One day things could be going great, the next it could turn out to be an awful day. And sometimes it doesn’t even happen by days but by moments. Like Forrest Gump says, you never know what you are going to get… with a life of MS.

There are different things people can do for their bladder issues. It’s important to determine the type of urinary issue you have. Some deal with physical therapy learning ways to strengthen the muscles the bladder uses, there are medications to support incontinence, there are support devices that help train the bladder to properly function, but if those treatments aren’t working there are several surgical procedures that can treat the problem.

Ten years ago I had surgery to place a suprapubic catheter in my bladder to help aid in the emptying of my bladder. I no longer had muscle control of my bladder so I was unable to properly manage its usage. It took time to get used to but I was thankful for having it done. My bladder was finally able to be drained to an external bag rather than me peeing all over myself and life was great once again. It was a learning curve but it made life easier for me.

Over time my bladder had created stones causing drainage troubles. I had surgery to remove them but was still having bladder issues. The nurse was having difficulties each month removing the Foley catheter to replace with a new one. My body just seemed to think the catheter was a part of my bladder and would try to seal the opening making the removal each month painful due to it trying to attach itself to my body.

My urologist had suggested I have my bladder removed to alleviate the problems. After taking time to think about it and reading about having it done, I approved the surgery February of this year. It’s been 6 months and I’m so glad I had it done.

I had to learn how to attach my newly needed bladder pouching system which wasn’t too difficult to deal with. A stoma was created to properly drain the urine my body creates I just no longer have an internal bladder for it to empty into. My bladder is now an external pouch / bag. I just have to make sure I wait until early morning to change it out because that’s when I have better usage of my hands.

It can get comical when I try to change my pouching system after having a lot of liquids in my system. My stoma which controls my urine will shoot urine out in a quick stream and without the pouch in place it’s equivalent to me peeing on myself. I usual change it out in the shower so I can have a clean belly to work with. But like most people learn with their pouching system, it’s suggested to replace it while standing up so you can properly place it. But for me, that’s not possible.

My routine is to take a shower to clean myself up, dry myself off, place a dry washcloth over my stoma so if I pee out the cloth will catch it, put my robe on and transfer to my powerchair, make my way to the bed, get comfortable lying down on the bed, prepare my pouch to place on the stoma. Normally by that time I’m thankful I placed the washcloth over my stoma because I will have peed a little in the process of getting ready for the new pouch.

When I get the new pouch on, I’m ready for a nap but also thankful that I got it all done by myself… no nurse needed. Then I get dressed and normally make my way to the living room and rest on my new powerlift recliner. I normally have to change the pouch once every 4 days. Sometimes I can even go as long as 5 days before changing it out. But of course there are also time I have to change it much earlier due to not placing it properly and the pouch pulling loose from my belly much too early.

I know it sounds complicated, but what part of MS isn’t. I’m thankful I don’t have UTI’s anymore or pain like before with a Foley catheter so the pouch change is nothing compared to my issues before. I’m thankful for bladder surgery to remove my bladder. It’s not something for everyone, but it’s doable. As long as I can keep doing things one handed, I will be able manage it for a long time by myself. I’m too stubborn and independent to do it any other way.

Don’t give up hope on ways to manage your bladder issues. There’s always a solution. Maybe not the one you want, but one that will make life easier for your already complicated life. Bladder issues aren’t the end of your life and neither is MS. Talk with your urologist about things that may help you out. You got this.

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