There’s More?

So I would like to talk about day-to-day well-being. I’m not saying this is what it’s like for everyone, but it is for me… and many others I know that have been diagnosed with Multiple Sclerosis.

Okay, so MS is the ‘big’ thing that I’m living/diagnosed with… but that isn’t all I’ve been diagnosed with… I have also been diagnosed with more ‘common’ (not as life changing) as MS.

So – just for a bit of background, let me just say that I’ve been a walking accident ever since I was little. If there was something to fall/trip over (yes even flat surfaces) I was the one to do it. I was very active in sports and things like that back in school, and my mother liked to tell me that I did things in life going 110mph…

Needless to say, I’ve broken a few bones here and there since I was like… 5 years old. Two of the times I broke a bone, I had to have surgery and pins inserted, and all that lovely stuff. Okay, I’m rambling… what am I getting at?

I have arthritis. Living with that AND multiple sclerosis, I can tell when the weather is going to change without looking at the forecast a day or two before the change happens. (Mind you, I live in Texas… so the weather is bipolar.)

Interesting enough, when I was getting imaging done when they were trying to figure out what was causing my symptoms (prior to being diagnosed with MS) they told me I have degenerative disc disease and spinal stenosis. After those two findings, I then got my diagnosis of MS.

Now, this is what I’m talking about when I named this blog “There’s More?” because when I’m hurting or having obvious pain, everyone assumes/blames my MS, but that’s not always the case. Now do I think that the pain I experience is worse because of my multiple diagnosed issues, YES.

So, the moral of this story… I’ve experienced it and heard from others with MS, that we usually aren’t JUST dealing with MS, but multiple issues… Like being diagnosed with MS isn’t enough as it is… I know that I’m reaching my limit of ‘strength/tolerance’ on dealing with all the medical issues I’ve been handed.

**Originally Published on MultipleSclerosis.net**

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Taking Tecfidera

So, I was very excited/nervous to start Tecfidera. After taking 3 other medications and them not working out… I hadn’t been on any medication for a few months. So, for the first week, I took have the “normal” dose, twice a day. The side effects I experienced were what I expected.

If you’re looking at the information posted about it, it states that the common side effects are GI problems, but studies showed that it would go away after a month.

Sure enough, I’ve been taking it for a little over a month, and I am not experiencing any of the side effects anymore. But unfortunately, I’m dealing with my MS symptoms that hate this Texas Heat!

I’m not saying that the medication was simple with no side effects at all. But compared to what I’ve dealt with in the past with the other medications I have taken (which are AvonexTYSABRI & Copaxone, in that order). So I have dealt with the Flu and Site Reactions, etc. For me, the side effects for Tecfidera were mild. It’s nice to be able to just add the pill into my daily medication schedule, rather than prepping for shots and stuff.

Were there times where I did dislike the medication from the side effects? Yah, no doubt. But I kept thinking about the long-term goals; how I want this medication to work for me and help slow the progression of my MS.

I think that every medication has it’s own set backs, it’s just up to you to debate the pros and cons.

I know that a lot of people are wondering about Tecfidera – and that’s why I wanted to kind of give an insight into how I was doing on it. Of course, it doesn’t help my MS symptoms… and we don’t really know how it’s working until we do an MRI (after taking it for a while), but as far as how it makes me feel… I don’t feel any different than normal, now that I’ve gotten passed that first month of side effects.

They even sent me a little pill box, it holds your daily dosage for a week:

TecfideraPillBox2 TecfideraPillBox

I have come to the realization that there isn’t going to be this magic pill that is a “DMD” that you won’t experience any side effects with. I hope we get it, but that just isn’t reality at the moment.

If you just want to know more about Tecfidera, you can also go to their website:
Tecfidera.com.

I’ll let y’all know how things go!

xoxo

Ashley Ringstaff

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**Originally Published on MultipleSclerosis.net**

MS & Things People Should NOT Say

I think we have all dealt with people making comments, or just doing something that is bothersome to us, when discussing our MS… or if it gets brought up at random… I’ve had some people tell me that I talk about my MS too much. Well, this was when I was first diagnosed and I was going through a LOT of changes, how could I NOT talk about MS a lot? But as time went on, and when I was having discussions with family, friends and sometimes-just acquaintances, there were things said or done that really bothered me and I had to bite my tongue and just nod and let it roll off my shoulder. So, just to vent, and hopefully provide something useful for others to consider when speaking to someone with MS, I’ve made a list of things that should NOT be said to someone with multiple sclerosis.

  • You don’t look sick
  • You shouldn’t drink diet coke
  • OMG this diet cures MS
  • OMG this vitamin will leave you symptom free
  • Aren’t you gluten free? … You should be
  • Aren’t you too healthy looking to have MS
  • Try this herb; it helped my cousin’s uncles’ sister’s friend who has MS
  • Well aren’t you taking your meds?? (Yes….) Then why is your MS bothering you still?
  • Are you contagious?
  • You shouldn’t eat meat…
  • What did you do to get MS?
  • How DID you get that? You must’ve had mono
  • If the heat bothers you, don’t be in it… or move…
  • I heard a vaccine caused it
  • Can’t you just walk slower?
  • Why are you dragging one of your feet?
  • Why are you always so tired? It can’t be that bad…
  • Well if you’re in remission, why are you on meds?
  • If pregnancy makes it better, why don’t you just keep having more kids!
  • That celebrity with MS seems just fine, why aren’t you?
  • Do you take enough vitamins?
    Are you sure it’s MS…? How can doctors be so sure?
  • Stop using MS as an excuse… you can’t feel that way ALL the time.
  • Maybe you just need to try a little harder.
  • Why don’t you try a different medication, that doesn’t cause so many side effects?
  • You seemed fine the other day…
  • You slept ALL night, how can you be so tired?
  • (This is for the younger MS’ers) WOW… you take more medicine than my grandma…
  • MS… isn’t that the muscle illness? (No. That’s MD = Muscular Dystrophy)
  • You daydream a lot in the middle of a conversation, that’s rude! (No… it’s cognitive issues)
  • Why do you keep forgetting things?
  • Oh TRUST me… I know exactly how you feel!
  • Oh, you should just exercise more…
  • It really can’t be that bad…

Oh… and when they compare how they feel or have felt in the past, with your symptoms… like it’s the EXACT same feeling…

Or when they just give you that “look”… you know the “real housewives” kind of look… nose in the air, scrunched up… Yeah that one…

I’ve come to learn that when some people (not all) ask how I’m doing… they are just doing it out of politeness… they don’t actually want to know how I’m felling, so I simply respond w/ the phrase we are ALL too familiar with… “I’m fine”

I could probably add to this list daily but I didn’t want to make the longest blog post in history! So while those of you are reading this that have MS are nodding your heads while you were reading, because you’ve been told the same thing before, I hope those that have a family member, friend or just an acquaintance with someone diagnosed with multiple sclerosis, take “the list” in to consideration. It’s not that we don’t enjoy people wanting to help out with their suggestions… sometimes it’s just nice to have support from individuals, and not their suggestions.

And I’ll just add this in there, this post is not meant to offend anyone or say that diet and exercise is something we don’t want to hear about… and that’s great if you’re on a specific diet that helps manage your MS… but I’ve heard too many times to count, “This certain diet will CURE your MS…” Well, the reason I disagree with that, is because I have a certain definition of the word “cure” when it comes to MS…

Cure for MS: Something that not only stops progression from happening in the future, but also reverses the damage that has already been done to my Central Nervous System. Even though stopping future progression is something we all strive for, we still have to live everyday with the symptoms that were caused by previous attacks.

xoxo

Ashley Ringstaff

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**Originally Published on MultipleSclerosis.net**

Being Unique with MS

I’ve heard a lot of things since I’ve been diagnosed with MS. Some of them are like, “Why don’t we have a ‘famous’ spokesperson for MS to represent the MS community?”

Well – it’s really hard to choose ONE person to define MS for ALL of us! Just because we are all diagnosed with MS doesn’t mean that we all experience the same thing living with it. Some of us have more flare-ups then others and some of us deal with symptoms that a lot of other patients never experience.

I’ve had people tell me, “OH! You have MS… but you look so good!” And I’m thinking to myself, “Well what am I supposed to look like?!”

Just because I’m walking around right now, and you can’t “see” anything wrong with me, doesn’t mean that’s how it’s always been. Or how it’s going to be in the future.

MS is known as a debilitating illness, so should we have a disabled person (someone in a wheelchair/someone who shows physical signs of being disabled) as our “Spokesperson”? Personally, I don’t think that’s such a good idea.

When I talk to people who have just been diagnosed and are around my age (I’m 25, by the way). I’m always asked, “Am I going to end up in a wheelchair?” The truth is, there is no correct answer to that, because no one can predict the future.

I can say that, yes, I’ve been in a wheelchair… I also have a Walker and Cane. Do I use them right now on a daily basis? No. I was in a wheelchair during a VERY bad flare, but that was right after I was diagnosed, so it was a lot to take in.

What I’m trying to say is, we’re all different, even though we are all living with the SAME illness. MS Patients are kind of like snowflakes – no snowflake is the EXACT same.

So just because someone is talking to you about someone else they know that has MS who isn’t doing well (or are completely disabled) that doesn’t mean that you are going to end up the same way.

Is MS scary with how unpredictable it is? I would be lying if I said no.

I’m not saying that you don’t have anything in common (as far as symptoms go) with others living with MS, but you’re not going to be “living MS” the same way as another person.

I know a lot of people who suffer from spasticity… some take an oral medication to help with their muscle spasms while others have had to get a Baclofen Pump or have Botox injected to control their Spasticity. So even if you are dealing with the same symptom as another patient, it’s still going to be different.

A good example-I have a cousin on my dad’s side who has MS. She was diagnosed a few years before I was. She has only been on one therapy with 2 or 3 lesions shown on an MRI and the only symptom she has had is Vertigo. Well… my MRI reports stated that they stopped counting lesions in my brain at 20… and I suffer from fatigue, spasticity, optic neuritiscognitive functionpain, nerve pain, etc. That just shows you that even ‘family’ aren’t the same with this illness!

The bottom line is – Yes, we’re all living with Multiple Sclerosis. Some of us are worse off than others, but we still connect because we’re all still living with the unknown of MS.

We just all need to be here to support one another… and understand and listen to each other with out passing judgement.

Embrace being unique – in more ways than just your MS!

xoxo

Ashley Ringstaff

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**Originally Published on MultipleSclerosis.net**

View of MS to Others

We all know that MS is a complicated illness to live with… so how do we even begin to explain it to our family and friends???

There is a very popular article called “The Spoon Theory.”1 If you haven’t read it, I suggest you read it soon and share with those who you would like to explain MS to.

People also use other analogies when describing MS. Such as – A wire… something cuts through the outer coating of the wire, leaving the actual wire exposed… this is used as an example of what happens to the myelin when it is attached, and the actual wire, is your nerve being exposed (the wire coating being the myelin).

What I have come to understand by living with MS is that when people have a “general” idea of MS… they believe that you are only affected by MS when you’re in a flare. But that isn’t the case for most of us… Just because others have a general concept of what MS is… that doesn’t explain to them the symptoms that come along with the damage that has been done to our Central Nervous System.

Spasticity/Tremor & Fatigue seem to affect me the most. Along with Neuropathy (Nerve Pain). One thing I find VERY difficult to describe is the “MS Hug”. I guess the best I have come up with is getting squeezed in a big hug by the Hulk, or something in that general area.

So, for all of these symptoms that we suffer from due to the damage done by MS… those medications have side effects.

I don’t think everyone can grasp the concept of “I’m tired” … coming from someone with MS. I especially don’t feel that they can compare how they feel to how we’re feeling, like it is relatively close. I’m tired ALL the time. I take Fatigue medicine just to be awake during the day, but then you add on the side effects of say my Spasticity medicine, that causes drowsiness.

Another thing that is difficult for me to really have people understand, is that MS is different for every single person diagnosed. Kind of like a snowflake, we all have something in common… but none of us are identical with the things MS does to us and how it makes us feel.

I’ve had to explain to strangers WHY I’m using a Handicapped Parking Spot…. That conversation began when someone yelled at me, “How DARE you abuse your grandparents parking pass like that! You should be ashamed!!” So, I’m getting out of the my car during this… once I’m fully out of my car, I have my cane by my side… this person decides to high tail it far away from me as fast as possible!

Needless to say, I think there is a misconception that makes some people believe MS means your in a wheelchair, or in some other way it “shows” that you are disabled in a way, or have an illness. Now I know that first being diagnosed, a lot of people first think “Am I going to end up in a wheel chair???” … Well, obviously, no one can answer that question for you, because no one can predict the future or how your MS will treat you. When I was diagnosed at 22, a few months later I was in a wheel chair. I’m not anymore. I’ve had to use every assistive device you can think of, but it’s not all day every day like when I was in my flare, it just depends on how I’m feeling that day/time.

A lot of my friends will see me when I’m having a “Bad MS Day”… the day before I “appeared” perfectly fine. That’s another misconception. Just because I was fine last week, yesterday… heck even that morning, doesn’t mean I’m going to stay that way.

The people who have been around me enough, know that when I stopped talking about something mid sentence… it’s not because I am off day dreaming… I just forgot what I was going to say… or just can’t find the word I want to use, so I start stuttering… Sound familiar? I’m thankful that my close family and friends help me find the word I’m looking for, or just wait for me to figure out what I was trying to say. Sometimes an hour later I remember – and I just jump right back in to a conversation with what I meant to say in the first place.

The thing is, MS is soooo different for every single one of us. There isn’t someone who could be like a “spokesperson” for MS… because not ONE person can speak on behalf of what MS is like for ALL of us.

You will also learn, if you haven’t already, to frequently say “I’m fine” when someone asks how you’re doing – even when you’re not. It’s just easier than trying to explain it to someone, who probably was just asking you how you were feeling out of common courtesy.

I know I’m rambling right now, I’m just going to blame that on my MS… just sayin’.

Hope everyone enjoyed my blog/rant! Let me know how you describe MS to others and how you’re feeling! I’de love to hear how others handle this situation.

xoxo

Ashley Ringstaff

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**Originally Published on MultipleSclerosis.net**

Tips for Managing the Heat with MS

Okay – if you’re anything like me… you can’t tolerate the heat due to your MS… if you can, you are SO lucky! Now I know we all classify different temperatures as “hot”… but I live in Central Texas, and let’s just say these past summers have not been easy! And not to mention the Electric Bill… that’s painful to look at during the Summer.

So I figured… if I can “tolerate” the Texas Heat with some of the tips and tricks that I have, I would share them. Let me just say that I loathe being stuck inside… So, I go out on my front porch and watch the kids play, join in when it’s not in the heat of the day if I can… But I still manage and I have come to learn my “limits” with the heat and overdoing due to my MS.

Okay, so if you haven’t heard of “cooling products”… you are missing out! There are cooling products for different areas of your body (yes, not just the vests). These make it easier to be outside, as long as it isn’t 115… I just don’t even tempt it when it’s that hot. I have products that I received from MSAA, they have a Cooling Distribution Program you should check out to see if you qualify. I also have products from PolarProducts.

There are also just some little things you can do if you wanna sit outside on your porch and things like that. My husband went to Lowe’s and got one of those hose misters… so I can cool off while being on the porch, with out having to have anything on me and it’s a light mist, so you don’t get soaked. I also have outdoor fans that I use to help me cool off. I also have two kids (boys), so they are very energetic and if I need to go out, I have a little tiny handheld fan that I use that you can get from any local store for a very cheap price. Then I have those water bottles that you can squirt your self with – but also drink from.

There are so many options on there to help us “handle the heat”… but for me, it doesn’t make it to where I can be out there like the heat doesn’t bother me at all. It’s a learning process… I’ve found the signs for when my body is getting fatigued from the heat, and I go rest inside. I really try to stay focused on staying hydrated as well.

I really enjoy swimming, so I try and go to the lake as much as I can to swim. Or since I have kids, I am one of those parents that has no shame hanging out in the little kiddy pool from Wal-Mart with the kids. Whatever works, right? Oh and of course wearing “light-clothing” … not just in color but in material as well!

If you’re one of those people who’s electricity bills sky rocket during the Summer Months, sometimes your Local MS Chapter can assist you with resources in helping with your utility bill.

I just thought I would share this little tid-bit of info, since it’s something I have to deal with a lot. I hope it helps out with everyone and try and stay cool!

xoxo

Ashley Ringstaff

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**Originally Published on MultipleSclerosis.net**

Getting on a Disease Modifying Therapy

Well, we have all heard it… why is it “so important” so start a medication once you’ve been diagnosed with MS?

First off, it’s already a difficult time in your life, dealing with being diagnosed, then you have to make all these decisions about your future with your health. How are you supposed to make a decision on a medication? And why are they so important to begin with, if it doesn’t “stop” anything?

I went through all of that when I was diagnosed! I was diagnosed when I was 22; I had NO idea what MS was, so everything I was going through was a lot to take in… I think it also depends on your neuro, on how you handle your diagnosis and choosing a medication. When I was diagnosed, it wasn’t by a specialist for MS, or anything like that. I was told I had MS, given a general description of what MS is, then handed a packet to start a medication. (No, I wasn’t given a choice on what medication to take.)

It’s well known that “the sooner you start a medication, the better”… but why is that? I’ve been told by MANY neurologists that specialize in MS, that you have a better chance of slowing the progression… where as, those who were diagnosed with MS when there was no medication available, those are the patients who are more disabled than others. So really the question is, Why wouldn’t you get on a medication?

There are so many options out there now for those with MS. It just depends on the individual on what medication you take. A lot of people choose medications by the “convenience” of how to take the medication… but I think this is a decision that needs to be discussed with your health care team, VERY thoroughly. Because, it’s not something for you to choose based on “how” you take the medication, but how it works… the percentage of relapse reduction… how it will fit in to your lifestyle, etc.

That’s a lot to think about, I know… but why wouldn’t you want to be VERY thorough when it comes to your health and your future concerning your mobility… As patients, we need to take it upon ourselves to educate ourselves the best we can… you don’t want to fully depend on others to make the decision for you… based on just their knowledge on each medication. The more you learn about the medications, the better prepared you are to make a decision and ask any questions you need to with your health care team.

I know that it seems like a lot to go through… but personally, I like to think that I’m doing everything that I can do to make sure that I can live my life the way I want to.

And you also need to keep in mind, that not one medication works for everyone with MS. Yes, we all have MS… but every individual is different with it. I’ve been on AvonexTysabriCopaxone… now I’m going through the process to start Tecfidera (BG-12)… Not all of those medications “failed” me so to say, but I didn’t tolerate them well when it came to side-effects.

That just goes to show how many factors come in to play when taking a DMD… While it’s important to be on a medication after being diagnosed, it’s also not a decision that can be made quickly…

My advice… do your research, talk to your health care team, ask as many questions as you want to… compile all that information, and then look into making a decision.

xoxo

Ashley Ringstaff

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**Originally Published on MultipleSclerosis.net**