I’ve Sprung a Leak

No, I’m not talking about THAT kind of leak, for starters. I just wanted to clarify that before I go any further. I needed to share what I’ve been dealing with a lot lately… and that’s my memory. It seems that I randomly just don’t remember certain things. Even things that are repetitive, like paying bills, it’s all completely slipping my mind. Hints the title, sprung a leak.

Memory issues can be very embarrassing at times. I try to laugh it off as much as possible, but I can’t always find the humor in certain scenarios. I mean, I’ve forgotten my age before… more than once… and it’s MY AGE! Like seriously? How do I draw a blank on that? Some people have probably thought I was severely intoxicated or something.

I’m known to have something pop in my head, which I need to remember. I usually add it to my ‘notes’ section on my phone… but at times, I’m like, “Oh, I’ll remember that.” Not five minutes later, and I’ve already forgotten what I was supposed to remember. I’ve started keeping a small notepad on me, so that I can write things down when need be… But recently, with the weather going from one extreme to another, my hands have been giving me issues… so it just depends on how I’m feeling. It never fails that my brain goes in to overdrive on things to remember, thoughts, article ideas, etc. It ALWAYS happens when I lay down to go to bed… Go figure right?

Setting up reminders

I’ve started adding all of my important dates, appointments, etc. into my phone with multiple reminders, right as my appointment is scheduled, or things of the sort. Or else, I won’t remember at all. Before I started doing this, I would get a Courtesy Reminder Call from my doctor’s office the evening before my appointment, and I would still forget by the morning. I’m sure I drive my husband crazy with this, always forgetting things. Thankfully, he has seen it happen first hand, and knows that I’m not just ‘being lazy’ or irresponsible, etc. If I miss paying a bill, and I get a call asking me what I haven’t paid, and if I can pay today… they have to ‘note’ a reason for the missed/late payment. I don’t know how many times they marked as, “SHE FORGOT”. Then I’m frustrated because they obviously have record of this, and are wondering why I’m always paying late, and that I’m just making excuses or whatever, but that’s not the case. I’m about to the point that I’m going to hand off the financial payments to my husband, because I just don’t feel like my brain can retain the information, ever.

I’ve been at a friend’s house hanging out, and I’ll go inside to refill my drink or something, and after five minutes, walk back outside not even knowing why I went inside. I will literally stand there and try to remember why I came in there, go through my thought process, what I was doing at the time, etc. Oh, by the way, I am on medication to help with my cognitive/attention issue… but it doesn’t seem to help at all times. I do much better around the 11am hour. However, come about 4pm, and it’s like my memory just goes to sleep till the next day.

It’s so frustrating

The worst part is that I don’t even have any one, physically, to be mad at. I try not to hold any negative emotions inside, but sometimes it’s just unavoidable. I remember that I used to be so good and remembering people’s numbers, birthdays, names, all of that. Now, if I meet new people, they have to keep repeating who they are to me, because I forget, especially in a large group setting. It’s almost like it’s ‘sensory overload’. Also, trying to remember things so often, brings on the MS Fatiguebig time.

Then there is the fact that if I get to know these new people and being to remember their names, if I don’t see them frequently, I will eventually forget their name, and I feel horrible about it. Before I was diagnosed, if someone forgot my name, that I knew and was around frequently, it hurt my feelings a bit. Now I’m on the other end of it, and it gives me a completely different perspective.

I’m sure I could write on this subject for days, but I’m going to stop it here. I will most likely revisit the subject in the future.

xoxo

Ashley Ringstaff

**Originally Published on MultipleSclerosis.net** 

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I Just Need to Vent

I know that I’ve said in the past, that I don’t want anyone’s pity. By saying that, it also doesn’t mean that that I don’t ever need to vent. Again, I still do NOT want your pity, just someone to listen to me, to understand and just offer some comfort at times. This all came about because recently I had my routine MRI done and it came back that I had a new/active lesion. Now, I haven’t had a new/active lesion in over two years, so I really wasn’t prepared for the news that came.

Emotional overload

I can tell you that I was angry and upset, and I couldn’t tell you which emotion I was feeling more than the other, because it was just a bit chaotic, in my head. I go to see my neurologist soon, so I’m looking forward to discussing everything that is going on, and make a game plan, if we need to change anything.

There is a difference between pity and support

So back to the subject at hand… I feel that with in the past, I’ve told friends and family, that I don’t want their pity; I was being 100% honest. However, there is a different between someone showing me pity and someone just being supportive. Those times that I need to vent, please feel free to give me your opinion on the subject, maybe show me a different perspective, but PLEASE I’M BEGGING YOU, don’t try and TELL me to do something. Why? Because I’m hard headed, for one. Another reason, because it always has something to do with diet/exercise/supplement/vitamin, etc.

Don’t keep things bottled up

I’m not trying to be rude by what I just stated, I’m just trying to be honest. Because, if I’m needing to vent, that means that something is upsetting me, so my emotions are off balance and there is no telling how I will ‘take’ someone ‘telling’ me to do something. I honestly think that once a week (minimum) that my best friend and I vent to each other. Mind you she has MS also, so it’s not your ‘regular relationship’, etc. However, we have found it beneficial to vent, when needed, instead of bottling it all up. I’ve bottled it all up before, and all my emotions exploded at once and I said things that I didn’t mean, and I took it out on those closest to me and that wasn’t fair at all.

Let me just share this little bit of info with you… I didn’t just ‘decide’ to start ‘blogging’ out of nowhere. I was writing down my thoughts and feelings, just to get the information off my shoulders and just put it out there, in some form. I had started blogging, because I found that I could post from anywhere… computer/phone, etc. So that I always had access to it, and so that it could also form a timeline of how I was doing/feeling.

I ended up chatting online with a support group, in a chat room, and we were giving out tips, so I shared mine. Some of my close friends were in the chat room, and asked to read what I was writing, and the rest is history.

So thank you, for everyone who reads all my vents/articles

xoxo

Ashley Ringstaff

**Originally Published on MultipleSclerosis.net**

Isolation & MS

I know that I have probably touched base on this in the past, as many others most likely have… but I wanted to bring up the issue of Isolation & MS. I feel that this should be categorized as a ‘symptom’ of MS, because it can be very common after being diagnosed with MS.

When I was first diagnosed and learned about the disease, I started to feel isolated… not that I was in reality, but I had some people here and there just distancing themselves from me. So I then started to push people away, because it’s always easier to leave than be left, for me at least.

But my thing is, when I was reading over all the material…. What to expect, what symptoms came with an MS diagnosis, it didn’t prepare me for the isolation I felt, which worsened by depression.

A 12-Step Program for being diagnosed

I almost feel like there is a ’12 step program’ of being diagnosed, in a way. I dealt with steps of denial, anger, depression, acceptance, etc. Except for the fact that we have no control over the whole relapse issue. Well we do in a way, but not COMPLETE control. It should also be known that isolation can come and go… just like MS Symptoms.

One of the big differences in isolation compared to other MS symptoms is that there is no possible treatment for it, at least, not directly. It’s not something that people like to bring up, think about, or even speak to their doctor about… I didn’t speak to my doctor about it at first because I didn’t feel that it was something that was ‘important’ in regards to my illness and managing it. I was wrong.

Easier said than done

Some people would say, well if you’re isolated, talk more… or socialize more… Now let me just say that it’s easier said than done. I may want to talk more and socialize more, but I won’t. Like when I was first diagnosed, I knew that I needed to socialize and really try and bring myself out of the isolation, but I was scared. I didn’t know whom I could socialize with, with the topics that I wanted to discuss.

Isolation is unpredictable

Isolation isn’t something that can be fixed and then never return. It’s just like MS… there is no predicting it. It is present throughout different times/stages of your illness, not just when you’re first diagnosed. For instance, when I’ve relapsed… I’ve gone back to isolation. Yes, I purposefully isolated myself. Some people have asked me why, and it’s because for me, at the time, it was safer. I was safer to isolate myself than to be judged, looked at differently, or just have people talk about me behind my back.

I saw this quote a long time ago, and I wanted to share, because it’s a bit fitting for how I have felt at different stages in life since my diagnosis. It reads

“Sometimes you put walls up not to keep people out, but to see who cares enough to break them down.” ~Socrates

So if you are feeling isolated, just know that you aren’t alone. Do we cause the isolation on our at times, yes, but that’s most likely because we’ve been burned before, and want to prevent it from happening again. Or maybe were making ourselves isolated due to depression, anxiety, stress… there are many reasons on why I have isolated myself in the past, and I’m sure there are other reasons for anyone else who has done it before.

I don’t feel like it’s a bad thing to kind of go on a ‘mental vacation’ for a night, etc. but be careful on how far you isolate yourself and for how long… because you don’t want to push people away that really truly care about you.

Until next time…

xoxo

Ashley Ringstaff

**Originally Published on MultipleSclerosis.net**

My Emotions Are Broken?

Okay, so my emotions aren’t actually ‘broken’, but I feel that they don’t work… normally, if that makes sense. I have taken some time to really think about this, and look back at my reaction to certain things/situations. And I just feel that sometimes, I don’t respond with the right ‘emotion’ at the right time.

The “wrong” emotional reaction

For instance, if someone is mad at me… I don’t react the way I would have say … 10 years ago. I just seem to have no emotional response to the situation. And that can be a problem, cause then people think I don’t care about what they’re voicing to me, but that’s not it at all. There are times, that I feel the ‘right’ emotion, but I don’t show the emotion. It’s like my brain can’t compute how I’m feeling to really show through my actions/words.

I don’t know if this is just me, but it’s something that I wanted to bring up for a while now. And no, I’m not trying to ‘blame’ this on my MS… cause for the longest time I felt like something was just wrong with me… until I discussed with my doctor. He stated that MS could affect emotional behavior.

Now, let me just point out that my emotions aren’t always broken… but just at certain times it seems. And it’s not something that I can predict when it will happen. I’ve never been a very ‘emotional’ person to begin with, by the way. I had the mentality that crying was a show of weakness growing up, so I didn’t do it. But I then learned that it’s okay to be emotional, and it doesn’t make you weak.

My emotional response isn’t predictable

It’s just so weird… I will get in an argument with my husband (because no relationship is perfect) and there are times that I will show emotion during the argument and we hash it out, etc. But then there are the times that we argue, and I sit there, listening to what he is saying and it appears as if I’m ‘bored’, or not paying attention. And I can’t seem to get a hold of it to not make it seem that way. I have been able to repeat everything back to him that he said, and do it with no emotion, almost like I’m reading it off a script.

I guess I just come off with an attitude most the time of “I don’t care” when that’s not always the truth… I just get so frustrated with how my mind won’t let me compute my emotions then I get angry at myself, not the person or situation. It’s almost like being locked up and being held prisoner inside your own head. Same thing applies with the whole “broken brain filter” or “cog-fog” issue.

If you really think about it, MS is inside our nervous system, so we’re being held back from doing certain things, accomplishing certain tasks, etc. But no one is physically holding us back, or keeping us locked down. It’s our heads, nervous system, whatever you want to refer to it as.

There was this video that I saw a while ago that was made for MS Awareness, that I felt really fit what I’m talking about right now. I have included it below… Now, let me just say that the video is kind of scary for some, and doesn’t really sit well with some… but it’s just want I’m trying to communicate in regards to my thoughts, emotions, etc. literally being stuck and not able to communicate them properly.

“Trapped”

So, while I was looking for the video I posted above, I came across a series from MS Society of Australia called “Seeing MS”. This specific video is called “Seeing MS – EXPOSING THE INVISIBLE DISEASE”.

I’m definitely going to look into the whole series, but I always like sharing things I find online, and sharing them with my family and friends, and all of you.

That’s all for now. I hope everyone is having a wonderful New Year thus far.

xoxo

Ashley Ringstaff

**Originally published on MultipleSclerosis.net** 

My Definition of ‘I’m Fine’

I'm fine. Save me.

I know that most of you have said “I’m fine” in the past, when you really weren’t… you hear other MS’ers saying it, when you know they aren’t… It’s just something that I frequently say… and I’m going to try and ‘define’ on what it means when I say, “I’m fine”, when I’m really not.

Well for one, when I hear the statement, “I’m Fine”, it makes me think of this image I saw that I want to get in a tattoo… It shows the “I’m Fine” writing, and then you flip it over… and it reads “Save Me”.

What do I really mean when I say “I’m fine”?

So what do I mean, and maybe others with MS too… what does it mean when we say “I’m Fine”? Well for me, it just seems like it’s easier to say I’m fine, rather than explain everything that is wrong. Now that is not be being overly negative or exaggerating… because let me tell you, if I described to someone everything that was wrong, when it was happening, I would never stop talking. And I already talk a lot as it is (See I got jokes).

It's hurts, but it's okay.. I'm used to it.

So why don’t we explain how we’re really feeling, when someone genuinely wants to know? Please don’t feel like I’m brushing you off by answering I’m fine, for starters. But to try and explain it… I already feeleverything I’m going through because of my MS, I don’t want to have to describe it all the time. I explained this to one of my friends recently… and she sent this to me…

She basically stated that, this is what she feels it is like for me… just by seeing what I’ve gone through over the years. I can’t remember the last day where I went the WHOLE day without feeling any pain, or dealing with ANY symptoms. The only reprieve I get from the symptoms unfortunately is by medication to help treat my symptoms. But who wants to take medicine all the time? Not me… unlike what SOME people like to assume… that I am a pill popper. Which couldn’t be further from the truth.

So easily put, I answer with “I’m Fine” just so I don’t have to describe and listen to myself list off everything that is wrong. I don’t like to dwell on the things I cannot change, and I don’t like to be a downer, if you couldn’t tell from my heavily sarcastic posts in the past. But I do have my moments where I’m being blunt and honest, and I’m not looking for attention, or pity, I’m just explaining the facts.

Sometimes it’s just easier

Sometimes it’s easier to say I’m Fine, rather than explain what’s wrong… then have to explain in depth about each certain thing, because the person isn’t familiar with MS, the symptoms, etc. It’s tiring, and I’m already battling fatigue as it is.

So for the honest truth, that I myself don’t like to admit a whole lot… is that I say “I’m Fine” because it can be extremely depressing for me to sit there and think about everything that is wrong… I don’t want to think about it. Kind of like out of sight out of mind.. This is my ‘normal’ now… This is my everyday. You just grow accustomed to the things you cannot change and grow from it and move on and do the best you are able to do.

Did I even make any sense just now? Or am I just rambling? Oh well, you probably get what I mean.

Xoxo

Ashley Ringstaff

**Originally Published on MultipleSclerosis.net** 

What Were We Talking About?

Have you ever heard of people ‘zoning out’ or doing it yourself? I’ve done it a lot, particularly when I’m not interested in what’s being said. However, ever since my diagnosis, it seems to happen much more frequently than before; and I’m not even zoning out on purpose!

I get so frustrated with myself, because I’ll ask a question, or be talking about something with a friend or co-worker, then my mind just draws a blank. It’s like I see the words you are speaking, I can hear the noise you’re making, but my brain is not computing what your words are saying/meaning and computing in my brain.

Feeling guilty

I feel so bad, when I am having a conversation, and I have to ask people to repeat themselves. This can also be because I’ve lost some hearing, but it’s also because my brain is blocking the information to compute in my brain.

I know that some people have been put off when this has happened with me. Then I feel bad… and try and explain… but it’s hard to explain, unless you actually KNOW what I’m going through.

This can also happen when I’m thinking about something… working on something… etc. I can read an article online, word for word, and I will have absolutely NO idea what I just read. This tends to happen more frequently if I’m tired, it’s at the end of the day, etc.

Forgetting things almost instantly

There are also times that I will be engaged in a conversation, listening and responding… 10 minutes later, I sometimes completely forgot what we talked about. My husband has noticed this because we will talk about something, then like an hour later, I’ll bring it up to him… and he just looks at me weird, then informs me that we just talked about all this not even an hour ago.

I think he finally understands that it’s not on purpose. I think this issue can really be classified as memory issues and cognitive function… sort of a mixture. Let me tell you, where I work full-time, I have to remember mileage on an odometer of a vehicle at times. For example… I went out to a vehicle, checked the odometer and by the time I got inside to my computer I completely forgot the numbers. Mind you, I repeated them in my head the entire walk back to my desk. So I had to go back and do it again… and it happened again! So I ended up taking a picture of the odometer on my third trip, with my phone, so that I could have it plain as day in front of me.

So let me just issue a BIG apology to anyone that I’ve spoken to in the past, that I’ve had multiple conversations with about the SAME EXACT THING… I know I’m a broken record at times, but you will have to excuse my brain, it likes to go on vacations with out me, it appears.

I can tell that me asking people to repeat themselves, sometimes more than once… or bringing up things to them.. more than once, it can be exasperating to some… trust me, it’s exasperating for me as well, once I realize that we’re having a repeat conversation… I’m also embarrassed about it at times, to be honest.

xoxo

Ashley Ringstaff

 

Originally Published on MultipleSclerosis.net

I Miss Me Too

So this is probably really random, but it hit me recently, that in conversations I seem to say, “I used to….”, frequently. For instance, I was playing basketball with my kids and some of my friend’s kids. Okay, not fully playing, but just shooting around. I was asked if I played… I said, “I used to… but not anymore.”

My husband does most of the cooking now a days, so in conversation, it’s brought up. People ask if I cook at all, and I answer, “I used to all the time… but not much anymore.” So what am I getting at? I’m getting to the point that there used to be SO many things that I USED to do, that I can no longer do… or that I can’t do as frequently.

It’s not something that I have fully looked into, until recently. I get random thoughts in my head sometimes, where I will just around and reflect on things that I used to frequently do in the past. They say people change with time, but people change due to changes in their life, and with time.

miss the things that I used to do frequently; maybe that’s why I don’t spend a lot of time thinking about the past. It can be depressing sometimes looking back and realizing that are so many things I can no longer do. It’s almost like I don’t even realize all that I’ve ‘lost’. It obviously didn’t all happen at once, but gradually over time.

One of the monumental things that I miss greatly is being outside. Obviously I live in Texas, so the heat isn’t something that is easily avoidable. It’s not that I can’t go outside cause of the heat, it’s that I can’t do all the things that I used to very easily. Some of them being swimming, fishing, hunting, going to the lake, river, etc. Going to watch outdoor sports, or even playing in them. I know some people are like, well swimming, you’re staying cool… very true, but if it’s over 100 degrees outside, my body is going to be fatigued from the heatand even more so after swimming.

I used to be able to go run errands all day long, or a couple days in a row… now it seems that even going to the grocery store is a chore that I have to plan out ahead of time. Somebody asked me if I was going ‘Black Friday’ shopping… that was a big NO! No way, nope, not gonna happen.

Some people wonder why I only wear comfy clothes, that mainly being jeans and a T-Shirt. Well for one, it’s comfy… the other… getting ‘dressed up’ takes a lot of energy, not to mention the whole girl thing of doing hair and make-up.

I’ve had people tell me that they miss the way I used to be… the things I used to… etc. It’s like, and I don’t… I didn’t ask for this… I didn’t want to stop doing the things I used to. I had to make changes to ensure I am doing okay, and that I do not have to deal with a flare up, or worsening symptoms.

Don’t act like I don’t miss the way it used to be either. But I have made changes in my life and have found new things that I enjoy. So with everything that was taken away, it’s almost like I gained something new that I didn’t know I would enjoy.

The bottom line… I do miss who I was before my diagnosis. I don’t like missing out on doing things because of it, but I do enjoy the things that I CAN do. I have to find the positive in my new life, because if I just focused on the negative, then it would consume me…

xoxo

Ashley Ringstaff

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***Originally Published on MultipleSclerosis.net***

Why Are You So Negative?

Do you know how many times, someone has asked me why I’m so negative? Or why it doesn’t seem like I have hope? I can’t even remember how many times, but way too many, lets put it that way.

I know you’re probably wondering where I’m going with this exactly, but hear me out. I’m not a negative person, and I do have hope for a cure for MS and many other illnesses like it. However, it’s a bit different when you’re actually living with an illness.

When people bring up things they ‘heard’ or something they saw on Dr. Oz, or something like that… they share what they have heard with me. I really appreciate them thinking of me, and sending the information my way, but sometimes it can be overwhelming.

So let me explain the fact that I am signed up to receive all MS news updates to be sent to my e-mail as soon as it hits the Internet. How do I do that? Well, I make a Google Alert, with the key word multiple sclerosis, and I can choose how often I receive the updates.

With that being said, when all these up and coming new medications popping up, it seems that things are looking up for those with MS, and I’m not arguing that. I’m also not saying I’m against trying the new medication coming out… So people wonder why I’m not super excited, over the moon, jumping for joy, etc.

I wanted to take this time to really explain why I react the way I do. I don’t show much emotion when I hear these things, because I’ve been there done that. Meaning I’ve sat there and waited for a medication to be approved, so that I can start it immediately, because of all the great research and clinical trial results it came with. However, it didn’t end up working for me the way it did so many others.

While I am happy that there are more choices out there for people with MS, people also have to remember that a certain medication can work for some, but not for ALL. There is not a ‘size-fits-all’ medication for people with MS.

So, with me not taking well to the big headline medication, I’m a bit cautious now. It’s not that I’m NOT hopeful; I just don’t want to be TOO hopeful…. does that make sense? I don’t want to sit here and be let down, again and again, when I’m already dealing with the disease and it’s symptoms as it is. I’m living with an unpredictable illness that has NO cure to this day.

So no, I’m not going to jump up and down every time there is ‘breaking news’ for MS, because there is no telling if it will work for me PERSONALLY.

Now, because my reaction is polite, but not over-enthusiastic, people act like I’m a negative person, with no hope, and that I don’t even want a cure, which is so far from the truth, it’s ridiculous.

For all of those people out there, that think that since myself, or someone else with MS, doesn’t ‘react’ a certain way… or a way that the person expected, doesn’t mean we are negative people… or that we are Debbie-downers, etc.

That’s not it all… We are just people that have had so much hope in the past, and have tried all these new things, with no positive outcome. It’s called self-preservation… not negativity.

It could also be the fact that you’re probably the 10th person that has shared information with me, and you’re expecting me to scream and be happy and go try it out right away. Again, I’m not trying to be rude, I just get annoyed with it sometimes.

It’s kind of of like hearing Sheldon from Big Bang Theory say, “Did you know…” 50 times back to back.

Anyways, that’s all for now. I just had to vent a little about that, cause it recently came up in conversation. So for those of you who aren’t full of joy, hope, etc.? Don’t feel alone; because I know that you aren’t TRYING to be negative, you are just getting by one day at a time.

xoxo

Ashley Ringstaff

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***Originally Published on MultipleSclerosis.net***

Avoiding Sick People

It’s that time of year, where all of the viruses and infections are going around. Trust me, I just experienced it with my oldest son having strep, and I think he shared. Usually I try to avoid people that are sick, but that’s obviously not an option when your child, or someone you live with is sick.

I’ve been told that I’ve said rude things to people, without really meaning to. When someone says they are sick, while we’re all hanging out, I’m like, “Oh no. You gotta keep a 15-foot radius away from me. Stay away from my imaginary bubble!” Someone got his or her feelings hurt when I said this, and I obviously was trying to make it funny, so I wasn’t being rude, but I guess it came off rude.

So I’m going to try and explain on the WHY I won’t willingly go around sick people, as I’m sure others with autoimmune illnesses are the same way. Basically, with MS, our immune system is mistaking our nerves as bad bacteria, and attacking. So, naturally, I don’t want to have my immune system kick up to fight a virus/infection, cause that’s when it starts misfiring.

Basically, it’s nothing against you personally, if you’re sick. I’m just trying to make sure that I don’t end up in a infusion clinic for 3-days straight on IV Steroids, because let me tell you, some people think it’s relaxing and the atmosphere can be relaxing, but why you’re there in the first place is NOT relaxing. You had to get an MRI to see if you were in a flare, most likely, and those are in no way RELAXING. And then there is the AWFUL taste you get in your mouth, while getting IV Steroids. Which by the way, if you ever have to get an infusion of steroids again, get a big bag of jolly ranchers, or something like that. It helps with the nasty taste in your mouth.

Now let me tell you, some people things I’m overly cautious about avoiding sick people, like I have a time-frame of when I will go around them, depending on when they started meds, the last time they had a fever, etc. I’m not taking any chances. I’ve gotten to the point that I don’t really care if people things I’m a germaphobe, or crazy. I’m doing what I feel I need to do, so that I don’t end up laid up sick, or in an MRI machine, or getting IV steroids.

Also, from experience, if someone is sick with a virus/infection, and I somehow get sick because I was around them, shared a drink, etc. I will not only end up with what they had, but 10 times worse. Not even exaggerating here, it happened last year, around this time actually. My husband is a firefighter/EMT… and they are obviously exposed to illnesses. Even though they try there hardest to kill all the germs they come into contact with, it’s not always 100%. So there was something going around the department, and James, my husband, ended up getting it. Now most of you know, you can have the virus/infection for a little bit without showing signs. So I contracted it, before James started having symptoms.

Needless to say, I ended up with Pneumonia, and they were telling me that I might have to be hospitalized. Yeah, no thanks, I’ll pass. This doesn’t even begin to cover the increase in symptoms that can be experienced when your immune system is fighting an infection/bacteria.

Lets not forget that if you’re getting an infusion of Tysabri, like myself, I can’t get my infusion if I’m fighting an infection. So then there is all of that nonsense that can be affected as well. I know for most, if you get sick, you go to the doctor, rest take meds, and then you’re better. That’s not how it works for me.

Something else that I also want to talk about, that is still on the topic… and can be used in different obstacles of MS as well. So let me just answer the question that I get asked, when people see how crazy I am about not getting sick…. “No, I am not overreacting. The things I am trying to avoid are not being blown out of proportion.”

Obviously, there are people out there that think I’m overreacting to certain situations, or making things to seem worse than they really are. But until you see it first hand, you will NOT understand. My father-in-law that lives with us didn’t fully understand it until he saw what happened first hand. Now, if someone at his work is sick, he tells him or her to keep their distance from him.

Now with that being said, I won’t have the same ‘reaction’ to every situation. It all depends on what illness is going around, etc. It could just keep me in bed for a certain amount of time, or it could cause a flare up. There is no telling what can happen, and the unknown is one of the scariest parts for me when dealing with MS.

All right, that’s all for now. Since I’m currently not feeling good, and I think my son shared his strep throat with me…. Do you see why this topic came up? I know I’ve written about it before in ‘Tis’ the Season’, but I wanted to brush up on the topic.

Until next time!

xoxo

Ashley Ringstaff

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***Originally Published on MultipleSclerosis.net***

Illness is NOT a Choice

Let me start this off by saying that I’m a bit frustrated…. Because I’ve had some people make comments here and there that imply that I ASKED to get multiple sclerosis. First and foremost, there is NO asking for multiple sclerosis. I don’t know anyone that would ask for it, or any other chronic illness. Who in their right mind would do that, let alone IMPLY that we ASKED for it.

It’s for those small-minded people obviously. It’s rude, and no one should EVER insinuate that we asked for this. I didn’t ask to take medications everyday. I didn’t ask to get infusions every four-weeks. I didn’t ask my immune system to attack my Spinal Cord/Brain.

It seems to be that these small-minded people only like to look at things from a certain point of view. That point of view being, having ‘benefits’ with a chronic illness. Now, let me just say that there are NO BENEFITS, except for meeting other patients that are AMAZING people. But to some people, they see certain benefits in having a chronic illness. What is it they see??

Well first off, they see that some are on disability and CANNOT work. Now let me tell you that this is a CAN’T and not a WON’T. Another ‘benefit’ being that we get medications, such-as muscle relaxers, etc. They also see that we take naps, or sleep a lot… because hey, who doesn’t like napping. But it’s the FATIGUE that we’re talking about here. They aren’t thinking about what’s CAUSING us to sleep more often, but just that we ARE sleeping.

It’s sort of like a ‘cause and effect’ theory. Except, these people are BLIND to the CAUSE and are only seeing the EFFECT, no matter how much you try and tell/show them otherwise. Trust me, I’ve tried to tell/show these people that it’s not something that I WANT to have, but they don’t see it that way. It’s almost like they are treating me like I’m ‘faking it’ to do what I want, when I want to. Which couldn’t be farther from the truth.

So, if you know of someone that is small-minded and has view of what I’ve listed about. Let them know this….

While you might see us sleeping a lot, or napping a lot… what you didn’t see is that the pain kept us up all night, with no relief in sight. While you might see us taking medications to help ease the symptoms, what you aren’t seeing is the side-effects of these medications… you also don’t see that these medications don’t make the symptom go away 100%. While you might see us using a handicapped-parking placard and compare it to a ‘valet’… what you didn’t see is us struggling to even get out of the house to get where we are going.

I could probably continue that list for a LONG time… but I think I’ve painted a good picture thus far.

So if you want to keep going through difference scenarios, it all leads down to this…

While you see all these so called ‘benefits’ … what you DIDN’T see is the COST that comes with all of it. So instead of trying to just summarize it all, I want you to take a look at some information I found from Rocky Mountain MS Center Website.

MS has a significant emotional and physical impact on the quality of life of those who have it as well as their families. Seventy percent of people living with MS have a level of impairment from the disease that interferes with at least one essential daily task. After 10 years of disease, seventy percent of people with MS will not be working outside the home. After 15 years, fifty percent will require at least a cane to walk. Thirty percent will eventually need to use a wheelchair.

Because individuals are diagnosed and become symptomatic during their most productive years, the financial cost for the individual and for society can be staggering. Direct costs are high. The medications used to treat MS cost between $20,000 and $30,000 per year and the cost for treatment of a disease flare-up is estimated at $12,870. MS also has high indirect costs— from lost wages to under or unemployment. The direct and indirect costs of MS are now estimated at $57,500 per patient per year. The total lifetime costs associated with MS for an individual is estimated at $2.2 million.

Although the cost of treating MS is great, the cost of not treating MS is probably greater. An estimated seventeen point two percent of Coloradans do not have health insurance. It is also estimated that, nationally, one out of three adults without medical insurance has a chronic disease and many of them do not receive regular medical care. The Rocky Mountain MS Center estimates that at least twenty percent of the MS population in Colorado receives medical care through the Medicaid system and have very limited access to MS specialty care. Individuals who do not receive specialty care are less likely to be on a disease modifying therapy and are more likely to experience more serious levels of disability.”1

On that note I’m going to end this article but I will most likely touch base on the subject in the future.

xoxo

Ashley Ringstaff

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***Originally Published on MultipleSclerosis.net***