What is to Blame?

I have been thinking a lot about something that was recently brought to my attention. I was asked, “What caused your MS? What or who is to blame for it?” So I was sitting there trying to come up with an appropriate answer, then my mind wandered and I thought… You know, this would be a great thing to write about.

It’s a really good question though, who is to blame for getting Multiple Sclerosis. Is it something I did? Am I the one to blame for getting it? Was I exposed to something by someone else that ‘triggered’ my Multiple Sclerosis onset? Or… was it something just in my body that is to blame? Did a certain food cause it? Did getting sick cause it? There are so many questions that we don’t have answers to, and this is one of them.

I think a really big thing that people need to be aware of is that we DON’T KNOW what caused us to get MS. Are there scientific theories for the cause of MS? Yes, there are. But none of those theories are 100% proven/accurate. So it’s just a big guessing game for the MS Community.

However, I don’t like to respond with just an “I don’t know” when I’m asked this question. I want to be able to give them SOME sort of an answer. I would like to have SOME sort of an answer, rather than nothing at all to explain it.

There are so many ‘unknown’ things in regards to MS and I just want to make that list shorter.

In the past, I’ve blamed myself. I felt like it was something I did, or something I exposed myself to, that triggered my MS onset. I still do blame myself at times; even if it isn’t the ‘logical’ thing to do.

I know that I’ve written things in the past that can relate to this specific topic, like… “Accepting the Unknown”, “It’s Not My Fault”, “Unanswered Questions” & “I Don’t Know“. So as you can see, this topic is not only a frequent topic for myself, but judging by everyone else I’ve spoken to who has read those articles, it’s on their mind as well. Maybe even possibly on your mind, now that I brought it up.

I sit here and hear people talking about wanting a Cure for Multiple Sclerosis. I see campaigns to raise money for research, to find a Cure for MS… of course I want that! What person with MS wouldn’t? But I’m still sitting here wondering how researchers are going to find the Cure for MS, when the cause hasn’t even been determined…

When I think back to schooling, on the steps we had to follow in science class when beginning a experiment, I was taught to use a Problem-Solving Technique and one of the first steps was always “Identify the Cause”. How can you fix something, when you don’t know the cause of the problem? If something is wrong with your car, you take it to a mechanic. They find the ‘cause’ of the problem – then you discuss how to fix the problem aka “cure”.

Even if you have been to counseling before, they talk about finding the root of your issues… aka The Cause

Is anyone else on the same mindset that I am? Sadly, I do know that the word “Cure” in regards to Multiple Sclerosis is usually done in order to catch someone’s attention to raise funds… and it works. You don’t hear something like… Donate to the FIND THE CAUSE…. You hear “Donate to FIND THE CURE”

I guess I just wish that there were more studies being done to find the cause of MS – not just a cure, or Band-Aid. Now, don’t take that the wrong way… because I do want a cure, I do want studies to be done to find it… I guess I just feel like that if the Cause was found, that we would be closer to having a Cure…

I’m rambling on about this, I know… but I’m just very passionate about this topic… I even wrote an article, in regards to finding a Cure… it was more about calling people out on their misleading promotions, but you get the idea. In my article, “Calling Y’all Out” (yes I used the word y’all, I am a Texas girl after all…) Anyways, in that article I stated the following:

Ashley’s Definition of a CURE for Multiple Sclerosis: A medication and/or technique/procedure that stops any future demyelination to a patients Central Nervous System to happen EVER again. BUT this certain medication and/or technique/procedure ALSO corrects any and all damage done to patients Central Nervous System due to Multiple Sclerosis. How do you have a CURE for MS when there is not even a (for sure) CAUSE of MS?

What are y’alls thoughts on this matter? What are we supposed to blame for being diagnosed? I want an answer to that…

Wow, I didn’t realize I was going to go on and on so much in this article… but I’m glad that I at least got it off of my chest, for now anyway. Since March was MS Awareness Month – I’ve been doing a lot of thinking on the matter.

xoxo

Ashley Ringstaff

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P.S. I did a video for MS Awareness 2015 – it’s more of an interview type video… but I answered a lot of questions that I’ve been asked over the years by individuals in the MS Field. You can check it out by clicking here or by visiting MSWorld’s MS Awareness Page.

**Originally Published on MultipleSclerosis.net**

So Much Change

As we all know, “Change” happens all the time. It happens as time goes on, it happens in technology, etc. So, with life, you have change. And… when you get diagnosed with Multiple Sclerosis, you have a lot of change going on at once and you are frustrated and can’t keep up and you want to pull your hair out. At least that’s how I felt at times.

I’m still dealing with change, due to my MS… even after being diagnosed for over four years. I think that’s something that a lot of people who don’t have MS can’t understand… we don’t just have to deal with change once we’re diagnosed, we have to deal with change throughout our diagnosis. Do we need to change our DMT meds? Do we need to change our Medication for Symptoms? Do we need to change our lifestyle?

I’ve made a lot of changes since I was diagnosed in August 2010. I’ve changed DMT meds a few times, and I’ve changed symptom management medication more times than I can count. But I’ve also had a lot of changes in my day-to-day life. I’ve also had a change in my priorities/morals along the way as well. Meaning, what mattered to me a lot right before I was diagnosed, probably isn’t that big of thing to me these days.

I’ve changed in regards to my maturity. I was diagnosed in my early 20’s, and now I’m getting closer to 30, and with that my mentality has changed. But not just how it would with “growing up” but with the realizations I had since I’ve been diagnosed.

I’m not so worried about making everyone happy. I’m not trying to be everyone’s friend, like I used to, sadly. Instead I have a select number of friends, and I’ve come to realize that I’m much happier now with fewer friends, than I was with A LOT. I don’t care for drama…. I don’t like to admit that I used to be into ‘drama’ but in a way, I was. The whole gossiping thing, which caused a lot of issues w/ me back then, doesn’t cause issues now. As you may have learned, I’m not good with holding back with what I want to say, so when I WAS gossiping, I wouldn’t just do it behind the persons back… if I had something to say about someone, I would say it to their face as well.

But I had an eye-opening experience since I’ve been diagnosed, and I’m actually thankful for it believe it or not. I don’t judge others like I used to, just by seeing someone out in public. Why have I changed in that way? Because I’ve had it happen to me… I’ve had people judge me out in public, without knowing me personally… and it hurts. Why do I refrain from as much gossip as possible? Because it’s stressful, and stress isn’t good for us MS’ers! Another reason is because I knew at some point that I was being ‘gossiped’ about too. It’s not a good feeling, especially when you can’t control what’s going on within your body. So it hurts when you’re being talked about in a high school drama “mean girls” type way, when you are going through so much as it is. Do I still gossip at times? Why yes of course… I am a female, after all. But I don’t gossip like many would think. I gossip about certain situations I went through, I gossip about books, TV shows, etc. But I try to refrain from doing any negative gossip about another individual… but I can’t say I’m an angel… sometimes people just deserve my attitude. Is that rude? Yes… but I’m no saint, that’s for sure.

What else has changed? I don’t go out all that much. Not because I don’t want to interact, but when I do get invited to go out and do something, sometimes my MS prevents me from doing that. Now let me just say, has MS impacted my priorities and the things I do, yes most definitely… is it all about my attitude or who I am as a person that caused that change, not necessarily. Why? Because let’s face it, having Multiple Sclerosis is EXPENSIVE!

So that extra money I had here and there to do something that I wanted to do or go do something with the family… it doesn’t happen as often as it used to, because I have medical bills in a BIG way. I know that it’s not usually discussed out in the open all the time, but when I have a $3,000 deductible for myself… and a $9,000 family deductible on insurance, and I meet not one but BOTH deductibles within a month or two, that’s saying something. Especially when I have to tell different doctors offices to check and see that I’ve met my deductible, when they try and make me do a co-pay… a lot of office staff at doctors offices find it hard to believe that at the end of January, beginning of February, I had already met my deductibles. Fewer headaches for the rest of the year, but it’s a big cost no matter what.

I’ve had people tell me that I’ve changed since I got diagnosed, that I’m not the “Ashley” that they once knew… well DUH! I guess it’s hard to understand what a life changing diagnosis can do to someone’s personality… So take me as I am, or move on. Since being diagnosed I’ve realized everything I took for granted… the easy things that I did before, that now take a lot of time. So I’m more appreciative of the smaller things in life, and I don’t have to deal with people who don’t like who I have become, that’s the bottom line of it all.

With all this change caused by my diagnosis of Multiple Sclerosis, you would think I would be fed up, but I’m the opposite. I’m thankful, in a way, for the eye opener. I don’t know who I would be today had I not been diagnosed because I’ve adapted to the change that this diagnosis brought on. Because of my diagnosis, I’ve met so many wonderful people, that I now call my family with MSWorld & what started my involvement in the MS Community. I’ve interacted with so many people due to my writing here at MultipleSclerosis.net… and I feel like I’ve made a difference within the MS Community, and helped some people out along the way.

So maybe not everything that MS changed in my life is a bad thing.

xoxo

Ashley Ringstaff

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**Originally Published on MultipleSclerosis.net**

I’m a Homebody

I’ll admit it – I like being at home… if people want to hang out, they come to my house… I don’t like to leave it that often… but why? Does it make me lazy? Do I just not want to get out of my comfy clothes? What’s the deal?

Well, it’s not something that I can answer with just ONE simple answer. Why do I not like leaving the house all that much… well because, leaving the house I can’t just grab my keys and wallet and head on out. Nope, not happening. Depending on where I’m going, it takes a lot of ‘planning’ at times, just to leave the house.

I have to make sure that I have taken my meds, that I have the meds in my bag that I might need while I’m out. Is my cell phone charged, in case I need someone for something? Oh gotta take a potty break during all of this… then right before I leave, I probably will need to take another potty break.

OH! Did I grab something to drink to have with me in the car, so that in case I need to take one of my meds, I have something to take it with? How long am I going to walk while being out? Will there be a lot of standing? Maybe I should bring my cane… I should probably wear something that is comfortable, if it’s going to be awhile.

Do you see where I am going with this? First of all, I’m not a big fan of carrying purses/bags whichever. But now I have to carry one so that I have a place for my medications. While I’m doing everything I listed above… that’s not including how much time it takes to actually get ready. I have longer hair, so it usually ends up in a ponytail. Mostly because it’s hot in Texas the majority of the year.

So yes, since I have to go through all of the steps above, just to leave my house… I prefer to stay at home if I can. It might come off as being lazy to some people, oh well. Call me lazy then, whatever floats your boat. But I have to conserve my energy and use it wisely. I’m not super woman. I can’t clean my house all morning, shower, then get ready to be out all afternoon. Nope, no way, not happening.

It just makes me realize the things I took for granted before I was diagnosed with MS, or showed any symptoms for that matter. Because I used to be able to just carry my little wrist wallet and phone and keys and that was it. Not so much these days.

This is another reason I don’t like shopping. I was never really a big fan of it before MS came along… but I could have a girls day and go shopping if I wanted to. Now I love online shopping. Again, this is not because I’m lazy. It’s because I’m using my energy wisely. Kind of like, we are told early in life to “spend your money wisely”… Well, to me, I feel like my energy is as valuable as money these days, so the same terms apply.

So when I stay at home all day – and I don’t change out of my sweats aka pajamas… yes I like to keep them on cause they are comfy, but also because who needs to add to the laundry pile, unless necessary. Now remember, I have two boys that love to play outside and get dirty, so my laundry pile can take a whole day to go through, just for them.

Some days I will just order food, so that I don’t have to cook… because I’m totally exhausted and I don’t have it in me to do the dishes. Is that lazy? Again, who cares?

I’ve learned from past experiences what I can and cannot handle, and I’m making decisions based off of that experience. Doesn’t mean that I’m always taking it easy and listening to my body. There are times that I push myself, but I do so in knowing that I will ‘pay for it’ later.

Now, while I’m being a homebody, I like to be on my phone or iPad or computer… Why, you ask? Because I can’t just sit down and watch TV for a long period of time. So I try to keep my brain busy by doing things for MSWorld. We just launched our new website, so that’s kept my mind busy, but I love it. I also like to challenge myself. So I will do brain games… they aren’t all titled that way. But there are a lot of ‘strategy’ games that I can play that keep my brain from wanting to take a nap.

But let me tell you, in between me getting things done at MSWorld, playing games and of course writing these articles, I’m still doing the whole stay-at-home gig. Which is laundry, cleaning up, etc. I try to remain as active as I can, so who cares if I’m doing it at home, in my sweats? If people have a problem with that, then they are just jealous. Not everyone can be an overachiever in his or her comfy clothes, but us MS’ers know how to pull it off, with style ;)

There are a lot of people that have MS that still GO to work every single daily. Kudos to you! That’s all I can say. I mean I know that what I do at home is productive, but actually having to get ready every morning on top of everything else you have to do… I can’t even imagine.

Anyways, I just had to address the whole, “homebody” comment… because I’ve heard it a lot lately and felt that others needed to know that it’s okay to feel that way. Now, don’t seclude yourself and all that… but there is no harm in taking it easy when you are fighting your own body each and every day.

xoxo

Ashley Ringstaff

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**Originally Published on MultipleSclerosis.net**

Dealing with MS Diagnosis

Well, if you’re reading this… you or someone you love has been recently diagnosed with Multiple Sclerosis most likely… or you have been diagnosed for a little while now. In any case, I wanted to share the ‘emotions’ I went through when I was diagnosed. I still go through some of these emotionsat times, if I’m in a relapse.

(These stages are not in any particular order; I’m just listing them as they come to mind.)

  1. Relief – That sounds weird right? That I was ‘relieved’ once I heard the words, “You have MS.” However, it’s the cold hard truth of the matter, for me anyways. I didn’t know what was going on with me and what was causing the symptoms I was having. I, of course, looked online for what it “could be” and that wasn’t such a great idea. I thought I had a brain tumor or something… so I was of course relieved when I found out that I did not have any sort of tumor.
  2. Confusion – I know that a lot of people might have had SOME knowledge as to what Multiple Sclerosis was before they were diagnosed, but I wasn’t one of those people. So I had no clue what it meant, how to treat it, is it genetic, what do I have to do to get back to “normal”… Unfortunately, I was seeing a “general neurologist” and he basically answered a few questions for me, then handed me a packet and told me to call the number in it to get on Avonex.
  3. Overwhelmed – Now I’m just overwhelmed with information and overwhelmed with so many questions on what to do next. I, of course, came home after I was diagnosed and started researching Multiple Sclerosis. Now, the main thing I saw when I was researching back in 2010 was disabledwheelchairs, people crying, etc. So that didn’t calm down my emotions what so ever. My husband and mom did this research with me, because I was having visual issues and couldn’t see properly to read it for myself. So while I was being overwhelmed, they were going through their own emotions of what was going to happen to me. In which case, I didn’t even think to ask them how they were doing because I just didn’t know what to do or how to feel.
  4. Shock – I feel like I was in shock at some point after being diagnosed. I just grew numb and mute about what was going on with me<, as well as things that were going on around me. It was like I was having an out-of-body experience. Like I’m just someone looking in on total chaos happening in front of me and not knowing how to stop it and change directions of the course that I was going down.
  5. Depression – This is a big one… something that I still deal with today. I’m coming to terms with the fact that I have to live with this disease for the rest of my life, or until a cure is found. I start going through so many emotional changes… I’m depressed and stressed out and anxiousall at once, because I’m still experiencing all these symptoms that are happening to me, with no idea of when they will go away. I was just told that it takes “time.” And right after I was diagnosed, it felt as if I didn’t have a lot of time to get better.
  6. Denial – Now, my mom is a nurse, my husband is an EMT/Firefighter, and I watch the news… I’ve heard about people being misdiagnosed with different illnesses a lot. So I’m wondering if I even have MS. A few months after my first big relapse, that got me diagnosed, I had another flare, but this time worse. How can it be MS, if I’m on medicine for it now? It wasn’t ‘explained’ to me fully (or I just didn’t hear it through all the chaos) that treatments for MS don’t STOP the attacks; they TRY to slow down progression. That’s a big difference. So, I had another MRI, I also had a lumbar puncture (spinal tap) to rule out other things, like Lyme Disease, etc.
  7. Isolation – So, at one point I finally came to terms that I do have Multiple Sclerosis. What am I going to do about it? I was seeing my whole families lives turned upside down, and I didn’t want that for them. I didn’t want my friends to have to deal with it either… so I pushed people away. It wasn’t to be mean or done because I was mad at them, I was trying to keep them from having to live through this with me. In the beginning, I didn’t know that when someone is diagnosed with MS, it doesn’t just affect him or her, it affects those that surround him or her as well. I already had a good understanding by this time as to what I was going to be dealing with and I didn’t want that for them.
  8. Finding Others with MS – Once I got over my pity party and stubbornness, I decided I wanted to talk to others who lived with Multiple Sclerosis. I wanted to find out personal experiences. Not just reading scientific information on the Internet. I wanted to know what it was REALLY like for others. So, I once again, went online and was searching for ways to speak with others who have MS. I had just turned 23 two months after I was diagnosed, and with all the images I had seen online, I was very skeptical/scared of meeting anyone “in person”. I didn’t want my first time meeting someone else with the disease to be a person in a wheelchair, I didn’t want to see what was “in store” for me. Not at that time anyway. So yes, I went online, found MSWorld and I now have my second family.
  9. Fighter – I finally gained support… not that I was ever without. However, there is a difference between your family and friends supporting you versus others who have MS supporting you. I had people reassuring me that what I was going through was normal. That I’m not dumb or stupid for what all I have said/done or how I reacted. It was an acceptance I needed to really give me that boost of confidence and bring out my inner fighter. It’s how I decided that I’m not going to just give up. So, taking the advice I was given, I went out in search for an MS Specialist, and let me tell you, that is one of the best things I have ever done. Having the right health care team on your side, makes such a difference, I can’t even explain it.
  10. Acceptance – I’ve come to accept my life as it is now. I’m happy, I’m involved with the MS Community being a Volunteer now with MSWorld, as well as Blogging for MultipleSclerosis.net – I have the knowledge about MS now. I stay as educated as I can about MS. And I live my life the best way I can with MS included. Why is MS included? Because it’s something I live with every single day, it’s something I have to factor in to my lifestyle all the time. I can’t just ignore it. So I live with it, and I live the best way I can. Now – I’m not saying I always have a positive outlook on things… because we all have our meltdowns, but for the most part, I’ve accepted what I’ve been dealt with & I won’t give in to it.

I just want to remind y’all that these stages/process… isn’t something that I ONLY went through right when I was diagnosed. I’ve gone through it almost every time I’ve relapsed. Every time a medication I’ve been on has failed. Every time my MRI comes back with more lesions… I go through these stages. Sometimes it’s a few of them and sometimes all of them. There is no telling.

So this is my reminder to everyone that you aren’t alone. I probably left out some ‘stages’ in here – but I do have an MS Memory, so please forgive me for that. But just know that it’s okay to feel the way you feel. There is nothing wrong with the emotions you are feeling and don’t let anyone tell you something different.

At the end of it all, it’s your life. You get to choose how you want to live it. Live it the best way you can and don’t give up. Know that you are never alone. Some people just don’t want to admit that they feel certain ways, but I’m telling you right now, it’s OKAY! If someone wants to TELL you how to feel, TELL THEM where to go… ;)

You can also check out a video I made for the “You’ve Got This” campaign. Click here to watch.

I wanted to share a song that someone on my Facebook page sent me. When I listened to it and read the lyrics, it was like it was MADE for people living with Multiple Sclerosis.

Live Like a Warrior – Matisyahu

xoxo

Ashley Ringstaff

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**Originally Published on MultipleSclerosis.net**

Day in the Life of Ashley

Well, I recently had a idea for an article come to me, seeing if I could share what it’s like to be me for a day. This is also for MS Awareness Month… to raise awareness about Multiple Sclerosis to the general population.

So, where do I start? Because I don’t have a normal routine for EVERY day of the week, but I figured I would go with the one that I’m used to, as long as nothing ‘eventful’ happens.

As you may know, I am a mother of two boys, who are 6 & 8. They are both in school, so I have to wake up Monday-Friday at 6am (central time) and get things ready to take them to school.

First thing that I do when I wake up, is of course, take my medicine. Now when I wake up, it isn’t a hop out of bed and walk around kind of routine. I have to lie there and fully wake up. Then I have to carefully get out of bed, to make sure that I’m ‘stable’. Once I get the boys up, I have to make sure that I remember to take my morning medicine.

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After I’m done with the craziness of getting my kids ready, I drive them to school, then most likely come back home. Now, I don’t have a job that I “go-to”. I’m a stay-at-home mom, but I also volunteer for MSWorld, as well as write these blogs.

Now, I don’t come home and just jump on the computer and get things done. Nope… I have to waitfor my brain to wake up. Even though my body is up and moving (or trying to) my brain isn’t on the same schedule. And there is no forcing my brain to wake up, it’s just a wait and see kind of thing.

So I make sure my dogs are taken care of. I have five dogs, so it’s a bit of work at times, because they aren’t even small dogs. I also have to make sure that my Rooster is good on food and water.

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Now, one good thing about being a stay-at-home mom… I don’t have to get all dressed up, hair done, make-up on every day. So I’m most likely going to be in comfy clothes for as long as I can.

So I of course, have to do things around the house throughout the day, as much as I can anyways. Some days, all of my ‘chores’ just have to wait, because I’m having a bad MS day, as I like to call it.

So once my brain decides to join the party, I get on my computer and check my e-mails, social media, etc. Not only do I love social media for my personal use, but I am also the Social Media Director for MSWorld. So I check up on everything, then set off to get things done on the computer that need to be done. We just launched our updated website at MSWorld, so needless to say my days have been busy with a bunch of technical work as well as design.

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I usually run any errands that I need to while both my boys are in school. So I have to make that trip to the grocery store that I just ‘love’ so much [insert heavy sarcasm]. Going to the grocery store doesn’t sound like much, but for me it’s an adventure that takes time and patience. Do I have my list? Do I have any meds that I might need while out? Do I need to eat before I go? The list goes on and on. And I hope I’m not the only one who goes to the store for a few things, then comes home with way too much.

Once I’m done shopping, I have to come home and unload the groceries, so that takes a lot of time as well. If I got anything heavy that a store employee had to help me load up, it has to stay in the back of my car until my husband can get it out.

With everything I’ve done so far on this type of day, I’m exhausted and want to take a nap. I know it doesn’t seem like a lot, but it is a lot for my MS and me. So, I’m contemplating taking a quick nap, but would you look at the time? It’s time for me to go pick up the boys from school.

Once I get home from getting my kids from school, we have to get their homework done, go through any papers that are sent home, etc. Then they need a snack and to get situated with whatever they are going to do…. Now, can I take that nap I need yet? Well… No.

My oldest son is in competitive gymnastics and has practice that he must go to certain days of the week. So I have to get him ready for that, along with helping my younger son with anything he needs. Then I have to load them up in the car, to go drop my oldest off for practice. Once I battle traffic and get back home, I feel like my bed is calling me. But of course… I can’t lay down just yet. What are we doing for dinner? Did I wash the clothes? Oh, I better check my e-mail. Those three thoughts/questions seem to come at me all at once, but I can’t do them all at once. So I’ll do them one at a time, then I will end up forgetting one of the things most likely.

Once I get my son home from practice, the kids need to take a bath. I have to get everyone fed and ready for bed, this includes my dogs. Maybe I can relax a bit in the bath? Yes… you heard me right, a bath. Why not a shower? Because I tend to not be graceful barefoot on wet surfaces, so the bath is the safer option.

When things are finally calming down for the night, I go to take my medicine again. Sometimes I have to really think back or ask my husband and kids if I took a certain medication already, because even though it wasn’t that long ago, I’ve already forgotten.

Once the kids are asleep, I usually get on the computer… check in with friends, MSWorld, Social Media… then I go lay down to go to bed.

I’ve wanted to go back to bed since I woke up this morning, so can you even imagine how relieved I am that I finally get to lay down? So glad it’s bedtime, because I’m exhausted. Now remember when I told you even though my body is awake, my brain isn’t. Well, now it’s the opposite. My body is ready to sleep, but my brain isn’t. It loves to go into overdrive whenever I don’t want it to.

My brain then decides to remind me of those tasks that I was supposed to do. I got dinner done, checked my e-mail… but I forgot about the laundry. OOPS. Guess it will have to wait for tomorrow, unless I forget.

So I’m trying to go to sleep, but my brain is just going on and on. After lying down for at least an hour, if not more, I can usually finally go back to sleep… where I’m not battling my own body on a constant basis. Which of course, if I’m tossing and turning, my husband doesn’t appreciate it all that much… but oh well. Through the good times and the bad, right?

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Okay, so I know that if you’re reading this, it probably seems like it’s a walk in the park for me. Unfortunately, it’s not. At times I literally have to force myself to stay awake. I, of course, didn’t go in depth about EVERYTHING I do everyday. Because me telling you about cleaning, organizing, cleaning some more (I am in a house full of males) and much more. It’s just boring to write about, but exhausting to do.

It seems that lately I’ve been saying, “There aren’t enough hours in the day.” And there really aren’t. Especially if I have doctors appointments going on, functions for my kids, etc.

So, there you have it… a summarized day in the life of yours truly!

Do you feel the same at times? Too tiredForgetfulHurting?

Xoxo

Ashley Ringstaff

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**Originally Published on MultipleSclerosis.net**

Excuse the Sarcasm

So if you have read my articles in the past, or if you follow me on Facebook or Twitter, you have probably seen first hand that I am a very sarcastic person at times. Some people find my sarcasm as being rude, but that’s not the intent… most of the time at least.

I use sarcasm as a buffer, so to say. If there is something going on with my MS, I will probably have a lot of sarcasm, because it’s much easier to be sarcastic than depressed. Well, not necessarily EASIER, but not as… negative?

So when it comes time for me to write about something that is bothering me, or something I’ve seen in regards to MS that I don’t particularly like, I’m going to be sarcastic. It’s either that, or I can be flat out rude…. So I think sarcasm is the better road to go on.

Some people have asked me, “Why do you let these things bother you?” Well, that’s a very good question. See the thing is, I DO let things go, and not let them bother me. But there is only so muchthat I can tolerate to ‘let go’ of. I’ve never been the kind of person to hold back on what I want to say, if it’s something I’m passionate about.

When I’m in a crowd, and people say something to me that’s on the list of, MS & Things People Should NOT Say, my irritation comes out. So instead of going off on the person, I’ll just say, “Oh, you don’t say!” or “If I had a dollar for every time I heard that, I would be rich.”

Could I respond in a different way? Probably, but like I said and as most of you probably know, I’m a blunt person. Now let me just clarify that I’m not rude/sarcastic to the people who speak to me with actual facts or news, and that they are doing this out of kindness, not to be snarky. It’s the snarky people who are on the receiving end of my rude sarcasm.

I have two kinds of sarcasm, by the way. My Rude Sarcasm and Humorous Sarcasm. Rude sarcasm goes to the snarky people, Humorous Sarcasm is for people who ‘get it’… as well as my family & friends.

I also don’t want to be handled with “kid gloves”. I’m not going to break… I’m not less of a person because of my MS, so I want to be treated like I would without my MS being known. Does my MS define me? Yes, in some ways it does. I wouldn’t be the person that I am today, had I not been diagnosed with MS. The person I am today because of MS, is strong, educated, vocal and supportive.

I had a lot of feedback on my article, No Sympathy for You, which pretty much stated that I shouldn’t react the way I do, in that scenario. But I just want to clarify that I’m not cold or mean to those who should be receiving sympathy. It’s the people who fake things, who I know personally, that I will not give sympathy too. Kind of like what I was stating in my other article, You Can’t Compare…

Now there are times that I need to be careful on how I react to things. I mean, y’all have probably experienced this before, but those days that you are just annoyed/tired and want to be alone without any responsibilities, someone needing something, etc., I have those days… and I don’t know how to react to people trying to talk to me during that time.

I guess at times, I also get fed up with receiving “pity” from others. I know that a lot of them mean well, well most of them anyways… but how many times do I have to hear, “But you look so good!” or “Oh wow, but you’re so young! You poor thing!” At the beginning, when people first started saying that to me, I thanked them. But when you have heard it over 400 times (minimum) … it gets REALLY old. It’s like that song that is on the radio every time you turn it on. For example the song, Happy by Pharrell Williams… I can’t STAND that song anymore! Because I have heard it WAY TOO MUCH!

“Support me, don’t pity me.” I need a shirt that says that… and I need to wear it whenever I’m at a gathering of some sort. I know that not everyone has the same viewpoint as I do, and I’m fine with that. It would be pretty lame, if we all had the same viewpoint.

So this is a public service announcement, in a way… WARNING: Please Excuse my Sarcasm, not suited for all eyes & ears.

So, if I get asked… “How is your MS treatment going? Is it slowing progression?” My response is most likely going to be… “My treatment is going well. I don’t know if it’s slowing progression, I don’t have an MRI machine in my closet.”

Like, some people find my response to be rude, but that’s not how it’s intended… it’s just me stating in a humorous way, that I don’t know if the medicine is fully stopping progression, unless I have had an MRI recently.

Another one I have been asked is, “How come you have to take medicine that doesn’t guarantee to stopping progression?” My response… “So that I don’t end up in a wheelchair again, and get ‘in trouble’ for popping wheelies.”

((Yes, I did get in trouble for popping wheelies, but my dad is the one who gave me the idea… and showed me how to pop up the wheelie bars. ))

Am I the only one who responds to certain situations with sarcasm? I hope not…

I’m rambling now… I’m gonna end on that note.

xoxo

Ashley Ringstaff

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**Originally Published on MultipleSclerosis.net**

Tips to Staying Organized

I know how hard it is to stay organized in general – but throwing MS into the mix of life itself can be downright unattainable. How do I know this? Because I used to try my hardest to be a very organized person but ever since I was diagnosed with MS it just went out the door. Not on purpose, of course, but because there is SO much involved in staying organized and on top of things with just daily life but having to be organized for doctors appointments, medications, remembering ANYTHING at all, is just a struggle.

I think that a lot of the chaos for me, has to do with having way too much on my plate and not enough time or brain power to conquer it all… but I also think a REALLY big part of this problem for myself, is my cognitive dysfunction aka Cog-Fog.

  1. If you have a phone that allows it, put your upcoming appointments into your cell-phone calendar, with an alarm reminder on it. Maybe even two, if it allows.
  2. Dry-Erase Board Calendar (Month) – Put it somewhere that you will see it frequently. This way you can also add your upcoming appointments to the dry-erase board. This will also allow you keep track if you have taken a certain medication that morning and don’t remember. You can make a little symbol that indicates you have taken that certain medication.
  3. If you are the ‘chef’ and ‘grocery shopper’ for you household, make a weekly menu, if possible. This way you don’t have to worry about last minute plans and shopping for meals.
    • Having crock-pot recipes handy are great. There are some that you can just add all of the ingredients to at once and freezer pack it so you can just dump into the crock-pot if needed. (I usually just Google: crock pot meals freezer pack)
  4. Don’t wait until the last minute to get certain things you might need and/or prepare for a doctors appointment that’s coming up. I know that it’s easier said than done, but we often say we will “remember to do it later” and end up forgetting all together.
  5. Doctors Appointments: Have your most recent medication list ready for your appointment. Along with 1-3 questions/comments you want to go over with your doctor. (While getting your medication list completed, make two copies. This way you can have one on hand, just in case) –While writing this – I decided to share some of the things I use to prepare for a doctors visit in MSWorld’s Resource Center. So take a look at the Patient Documents area to view/download/print forms.
    • **This Section of MSWorld’s Resource Center is still growing so check back often**
  6. If you are the person that pays the bills for you household… auto-pay is a great resource to use if it’s offered. This way you don’t have to ‘remember’ to pay those bills on time. You can also use that alarm reminder, I talked about this in the beginning, on your phone for bills that have the same due date per month.
  7. Have an early morning ahead of you? Do as much as you can the night before (shower, get clothes out, etc.) so that you aren’t trying to get everything done the morning of.
  8. Cleaning: Instead of having a ‘cleaning day’… have a ‘cleaning week’. Don’t over-do. Clean a room per day. (Kitchen = Monday, Living Room = Tuesday, etc.) Trust me, I know this is easier said than done because when I start cleaning, I just want to get it all done in one go. But I have learned over the years, to pace myself, and that the cleaning will be there for me to do the next day.
  9. Have a shopping list ready for you when you go to the store. To make things easier and quicker on yourself, list your grocery list by section. (Produce, Dairy, etc.) And as for most things today – “There’s an App for that”.
    • One that I use is: AnyList – which I’m thinking is only with the Apple Store – but you can also see it on your computer as well.
  10. If your pharmacy offers this, sign-up for auto-refill for you prescriptions. Some places even offer to have your medications delivered to you. This also depends on your Insurance Carrier.

Anyways, I figured that I would share the things that I use with everyone, so that maybe it can help some of you stay on top of things. Living with MS isn’t easy – it’s a struggle, a battle, a fight… and I feel like helping out each other and working together, we can really make a difference… big or small.

xoxo

Ashley Ringstaff

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**Originally Published on MultipleSclerosis.net**

Picking Sides

Don’t ask me how I come up with the titles to these articles at times because I honestly couldn’t tell you… I promise I’m writing about something that does involve MS, trust me.

So what do I mean when I say “picking sides?” Well, I’m referring to the fact that it seems that my MS likes to pick sides of my body that it’s going to affect, usually worse on one side in comparison to the other. I’m not sure if this applies to you, but I know that it applies to not only myself but also my friends with MS as well.

For me, it seems that my right side is more affected with MS than my left side. Now this isn’t completely visual either. I have that burning/fire feeling on the right side of my lower body and leg.

I think to myself that sometimes I wish my MS would “show itself” on both sides of my body, instead of just one, so that I’m not favoring one side, etc. Why? Well, let’s say that my right left is “on fire”… when that happens I don’t want to walk on it, I don’t want anything or anyone to touch it, nothing. So my left leg will overcompensate due to my lack of use of my right leg. No big deal, right? Well, it’s not that easy.

See, when I’m overcompensating for a symptom that has flared up on one side of my body, I’m over exerting myself on the side that is compensating…. So sooner or later, not always, but for me it mostly happens… I will start to have issues on the leg that was fine when my other one was on fire. Does that sound familiar?

I’m just going to go out on a limb and say that my Multiple Sclerosis is a lefty…. Because as most of us have learned… is that each side of your brain controls the opposite side of your body and the function it’s supposed to carry out. This is why I say that my MS is a lefty, because I’m mostly affected on my right side. This is a really great article about MRI Images & Symptoms by Laura Kolaczkowski,Why Don’t My MRI Images Match My Symptoms?”

Kind of stinks that I’m a ‘righty’ though, it can make things VERY difficult at times.

Now, I’m not at all saying that I’m not affected on the left side of my body at all, because I am. It just seems that my left sided symptoms are even harder to “see” than the symptoms on my right side.

I was “lucky” enough to not only have Optic Neuritis on my right eye, but on my left as well. After thinking about it and speaking with my doctors about this, I asked them if my left eye Optic Neuritis could have been brought on my it over compensating for the vision issues I had with my right eye. The answer I received??? “It’s possible…” Well, okay then.

So why am I going off and ranting about MS picking sides, blah blah blah? Well, it does matter… to me at least. My whole right side is weaker than my left, but now that I’ve had to become accustomed to that, my left side gets very tired and seems to want to “give out” on me at times.

I’ve even had comments in the past like, “Why is your left foot dragging? I thought it was the right foot you had problems with at times?” It’s really complicated to answer that… So I’ve just said, “My left leg can’t carry the whole team and not have a second string.” (I’m into sports, just a FYI.)

I still wonder at times, is there something in the ‘functioning’ that is MS, that causes it to ‘pick a side’ that it’s going to attack? How does it target its victim (nerve)? I sound like I’m discussing a video game or something… and MS is the bad guy, like Bowser from Mario Bros. or something. Oh – and the princess is my nerves? I do get easily sidetracked at times so excuse me for that. Although, you probably do to, so I’m glad we’re apart of the same (SBC) Sidetracked Brain Club. (Yes I totally just made that up.)

So in a way, if you really think about it … while MS can attack and affect only one side of the body… it still affects both sides in the long run. And I totally just thought about that while I was writing this. See?! Y’all help me all the time to come up with all these insightful thoughts.

On that note, I’m going to give my brain a break for now…

Wishing everyone well!

xoxo

Ashley Ringstaff
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**Originally Published on MultipleSclerosis.net**

Traveling with MS: What You Need to Know

As most of you may have seen or heard, I tend to travel a bit every year to attend MS Conferences, on behalf of MSWorld’s Conference Center. I started doing this for ECTRIMS 2011 in Amsterdam, which was October 2011.

When I look back to what happened on my first time traveling, especially international trips, to how I prepare and travel now… there is a HUGE difference.

It was pretty much, learn from previous experience(s) for me. From 2011 to now, I’ve also traveled while being on different Disease Modifying Therapies for MS. I’ve also traveled during easy times with my MS and at times when my MS impacted my life a bit more than “normal”.

So I have sort of a list I go by when preparing for travel, whether it’s by car or plane, which I wanted to share with everyone.

I don’t just travel with one bag for clothes, etc. I have a bag/suitcase that I use for my clothing, shower bag, etc., but I also have a separate bag that I have with me at all times. This bag isn’t apart of my ‘checked bag’ at the airport and it’s not in the back of my SUV (or trunk if you have a car).

So for my bag I keep with me, I include:

  • Medicine
    • This includes medicine I might need while traveling, as well as any medications I could possibly need. You never know when you might need it and having it easily accessible is a must.
      • Make sure that you have enough medication on all of your prescriptions, so that you don’t run out while you’re away.
    • Medical Card/Information
      • When I’m traveling, I usually use a different wallet/purse. So I make sure to have a Medical Information ID Card in my wallet/purse, but also another one in a front pocket on my bag that I carry. This is just in case of an emergency, but you never know when it could come in handy. It’s good to be overly prepared for any emergency situations.
        • I also have the “American Medical ID” Necklace & Charm… this is also just in case.
      • Hand Sanitizer
        • I’ve talked about this in my blog, “Tis’ the Season”… I don’t want to be miserable on my trip because I picked up somebody’s nasty germs and got sick. Use it often!
      • Travel Pillow/Blanket
        • Yes, I know that certain airlines offer pillows and blankets, but do you know where that stuff has been? I don’t… and I don’t want to find out. So I bring my own, thin/comfy blanket, so it doesn’t take up too much room.
      • Electronics (and chargers)
        • Is it a pain to keep this with me at all times? Yes it can be. But I don’t want my electronics to be left in my checked bag and tossed around during transfer. I do have a rolling bag for traveling by plane, this way I’m not carrying a heavy bag on my shoulder. Also, having my computer/iPad & phone w/ me at all times, I know I won’t get bored.
          • Mind you, I have a Macbook Air & iPad Mini, so they aren’t very heavy to begin with.
        • Folder for Travel Information
          • I always have a printed-paper of my hotel confirmation, flight confirmation, etc. This way I don’t have to search for this information in my e-mails, etc.
            • Apps on my phone: I have a lot of travel apps, this way I have a lot of the information I might need on my phone.
          • Cane
            • In the past, I’ve had to travel with a cane. The first time I did this, it was just a normal cane that you see at your local pharmacy. That was BIG. I now have a cane that can be folded, this way I can put it away when I don’t need it. (By the way, I don’t just want to have a plain looking cane, I like it to have a design… so if you’re like me, look up fashionable canes on the internet.)

Now, when it comes to what I include in my suitcase… I know I’m a girl, so you’re thinking oh goodness; this is going to get complicated. Now, my first time traveling, there was a lot of stuff in my luggage but I’ve come to figure out some things that make it a bit more organized and easier.

You know those infomercials you see on the TV that are usually VERY annoying or pointless?? Well they aren’t all like that. I got me some “Space Bags” to use when I’m going to be gone for a while and need more clothes than usual. Using the vacuum packed bags really helps make room in my suitcase for more clothing. But this can be a problem with the ‘weight limit(s)’ that some airlines have, so be sure to check what your limit is. I have one of those ‘luggage scales’ now, so I don’t have to pay overage fees, or move things around to different bags. (Now, I didn’t actually order the “Space Bags” from TV… I found that my local store had a similar product, so check that out!)

It’s also hard to plan accordingly with your wardrobe just by looking at the forecast for your destination, because we all know that those aren’t 100% accurate! 

Now what do I wear to the airport? Comfy clothes! I’m not going to see any of these people ever again while traveling most likely, so I dress for comfort, not style: Easy shoes, sweatpants or jeans w/ no belt, T-shirt & sweatshirt. This way I don’t set anything going off when I go through security. Yes, even if it’s not cold where I’m going, I take a sweatshirt, cause it gets cold on planes, etc.

If you’re going on an international flight, make sure you have some foreign currency on hand before you leave the U.S. – Most airports have places to do this.

Oh – make sure you let your bank and phone carrier know that you are traveling and where to, so that there are no complications. If your phone carrier doesn’t have coverage where you’re going, get one of those pay-as-you-go phones.

DON’T FORGET YOUR PASSPORT/IDENTIFICATION! And don’t forget to have enough room in your bag for souvenirs! Be sure to have enough time to get from point A to point B. Most airports/airlines offer assistance to those who have a disability, like MS. Do NOT be stubborn like I have been in the past. If you need it… use it. Don’t wear yourself out!

Hope this helps y’all out! I’m sure I forgot something, go figure… so be sure to comment with your own tips!

xoxo

Ashley Ringstaff

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**Originally Published on MultipleSclerosis.net**

If it Ain’t Broke, Don’t Fix it…

You may have heard the term before, “if it ain’t broke, don’t fix it.” Usually it’s pertaining to something in our lifestyle, home, etc. Basically meaning, if there is nothing wrong with it, don’t change it. So why am I saying this phrase now? And how does it have ANY relation to MS?

As a lot of you may have seen, heard and/or read, there have been a lot of new medications made available in recent years. For example, when I was diagnosed in August 2010, there was AvonexBetaseronCopaxoneRebif & Tysabri. Now, there were probably some other medications used to treat multiple sclerosis, but I named the top ones that I heard about after being diagnosed. Used to be, there was just the “ABC’s” meaning AvonexBetaseron & Copaxone. Since I was diagnosed in late 2010… There have been 5 new medications approved by the FDA, but there have also been changes in administration of an existing medication, dosing changes, etc.

As some of you may know, I’ve tried a handful of MS medications… but I wanted to make it clear as to why I have had multiple changes in my disease modifying therapy. So let me just say that, I started off on Avonex… and I did well on it, but it wasn’t slowing my progression in any way, so I went to Tysabri. This was in 2011… and the JC Virus Index testing was not available at that time. So when I came up JC Virus positive on my routine labs, I decided to try a different medication, where I was more comfortable with the risks, side effects etc. (For more info about the JC Virus and PML, click here. To view more info about Tysabri, click here.)

I then went to Copaxone… and at that time, the only available dosing for Copaxone was once-a-day injections. I did well on Copaxone as well, but a few months into the treatment, I developed a reaction to it, and had to discontinue Copaxone. I decided to just wait for Tecfidera to be approved, because it was going to be happening very soon, and I didn’t want to have to worry about doing a “clean-out”… flushing my symptoms of drugs, which is basically waiting a period of time to make sure the medication is out of your system.

So I went on Tecfidera once it was FINALLY approved… and I did very well on it. I didn’t have severe side effects. The side effects I did have, pretty much went away after the first month of taking it. I was finally very happy about the medication I was on, with little to no side-effects once my body adjusted and then studies had shown that it did really well in slowing MS progression. (Article Post: Taking Tecfidera)

I went in for my routine MRI, and it seemed that Tecfidera wasn’t working for me the way it should have… so I made the decision to return to Tysabri, seeing as they now had the JC Virus Index Testing, which monitors your JC Virus ‘level’ that correlates to the chances in getting PML while on Tysabri.

So, as you can see from my in-depth explanation, every time that I made a medication change, there was something wrong with how I responded to the medication or the risks (at the time) were greater than the benefits, for me personally

But my point here is, I didn’t change medications at any time, just because there was something new out there. While it’s exciting that there are more and more medication options becoming available to those with MS, there isn’t just ONE medication that works for ALL of those with Multiple Sclerosis. (Read more about my article describing how no two patients are the same, MS Snowflake.)

As you may know, I attend major MS conferences with MSWorld and Dr. Daniel Kantor, and I get to speak with numerous medical professionals while I’m attending these conferences. And it seems to me that most of them believe that if there is nothing wrong with the medication the patient is currently taking and it is managing their disease positively, then there shouldn’t be a reason to change. Now, when I talked to some neurologists that were from the South like myself they pretty much said or directly quoted, “If it ain’t broke, don’t fix it.”

The way I see it, if you have something that is keeping your MS progression under control, is it worth the risk to change to something else, just because? I know that the answer is different for everyone. A lot of people want to go to an oral medication because they’re tired of injections, or something like that. I can completely understand that.

But if you’re comfortable on the medication you are taking to help slow your MS progression and have no problems with the administration of it, why would you want to change? It has been said by numerous medical professionals that they have not found ONE specific MS disease modifying therapy, that works with the whole entire Multiple Sclerosis Population.

If you aren’t on any medication for your MS, I completely understand. Some people do well managing their MS without medications, others don’t have any medication options left unfortunately. But for me, personally, I’ve had a “Drug Holiday” as I like to call it, and it wasn’t good for me AT ALL.

So why am I rambling on about this? Because I know that a lot of us living with MS reach out to others that are living with MS for opinions, insight, etc. So I want everyone to keep in mind that, just because one person you speak to had a horrible time with one certain medication, doesn’t mean that YOU will. We are all different; MS affects each and every one of us differently. Yes, we have a lot in common symptom wise, but our MRIs are not all identical.

Speaking of symptoms, I feel the same way about symptomatic treatment… “If it ain’t broke, don’t fix it.”

I understand that we all want to discuss certain medications, treatment options, etc. with one another and that’s amazing. We need to be there for each other. But I’m not going to make a decision about my MS care based on another MS patient’s experience. I will, however, keep their opinion in mind when I discuss things with my neurologist, nurse, etc.

I know that not everyone will have the same viewpoint as I do about this, and that’s okay. We are each our own person and we each have our own circumstances surrounding the decisions we make in regards to our plan to battle MS.

Anyways, I wish everyone the best! Until next time…

xoxo

Ashley Ringstaff

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**Originally Published on MultipleSclerosis.net**