About Ashley

Volunteer for MSWorld.org - Diagnosed with RRMS August 2010

Stress and the Holidays with MS

Can you believe it’s already that time of the year again for the holidays? With everything we have going on in our lives and tacking on multiple sclerosis with it, it can be very hectic.

The holidays are meant to be a time to be with family and enjoy ourselves, not stress over shopping, hosting parties, cooking, etc. Then you tack on the crazy weather we have been having on top of everything else, it’s just down right insane.

(Now maybe some of y’all are used to the cold weather, but it’s a bit of a shock to us down here in the South.)

So I thought I would share some of the things that I do, so that I’m not adding stress to my already stressful life. It’s hard to be completely stress free, so I’m not even going to attempt to say something like “stress free.”

Sometimes it feels like there aren’t enough hours in the day to get everything that we need to get done, completed.

For me, when the day is coming to a close, I feel like it’s family time and time to relax. Not to run around ‘till I’m exhausted getting Christmas shopping done, etc. I don’t have the energy and/or strength to stand in lines, to fight the crowds, and everything else that comes along with holiday shopping.

Many sales aren’t just limited to ‘in-store’ purchases, but are also online. One thing I’ve done in the past – and will do this year as well, is shopping online. I know it’s not the same thing as actually going to the store and buying things, but it’s better for me and my MS, so that’s what I’m taking in to account. I don’t want to run down my body or cause my MS to flare-up trying to shop for the holidays. Where is the fun in that?

You would be surprised on what all is offered online. I love shopping at Amazon, because they seem to have almost everything available because they have outside vendors. Plus, a lot of the time when you’re shopping online certain stores offer free shipping if your total price is over a certain limit. Even if you have to pay for shipping, I think that the same amount would go towards gas if you’re actually driving around and shopping.

Now, whether you are shopping online or in the store, see if they offer gift-wrapping. This is a very big problem for me. I have spasticity in my hands, so if I’m trying to wrap multiple gifts at a time, my hands start giving me issues, and then the wrapping isn’t so pretty.

If you enjoy doing your own gift-wrapping, try and make a schedule out of it, so that you aren’t wrapping everything at once. I’ve done that before, and it wasn’t nice at all.

I know that it can be annoying that we have to make certain changes in our ‘routine,’ but I feel that those changes are worth it personally. By doing some simple, small changes, I can make sure that I’m not going to ‘pay for it’ from my MS in the future.

If you’re hosting a holiday event at your house, kudos to you! I don’t think I could handle all that. But if you are one of those people, don’t feel like you have to do ALL of the cooking for the gathering. Ask family/friends to bring certain dishes. Have a little sign-up sheet online, Google Docs, or something.

Something I have come to absolutely love is my crock-pot. This way it prevents standing for a long period of time cooking certain things. I can throw things for a recipe in to my crock-pot and turn it on, and it’s one less thing to worry about.

I love getting recipes on Pinterest and similar websites. If you just Google search “Holiday Crockpot Recipes,” I’m sure there will be plenty of results to choose from.

One last note… If you are going to make a run to the store to get your ingredients for a recipe, or anything else for that matter, have a list put together. I like to organize my list by section; this way I don’t have to scan through the entire list every time I look at it.

Most importantly, have fun with your family and friends. This is a time to spend time together, and be thankful for what we have been blessed with. I know it’s easier said than done, but it’s okay to allow someone to help you out. There is no shame in asking someone to help out with simple tasks.

Happy Holidays, everyone!

Ashley Ringstaff

MSWorld Volunteer

www.msworld.org    

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Why I Choose to Medicate for my Multiple Sclerosis

I know that there are a lot of people with Relapsing forms of MS who wonder why we are encouraged to medicate. Especially, when these medications do not ‘stop’ progression, but have only shown to slow progression. It’s a big decision to make when choosing to medicate, if you do plan to do so.

I can honestly say that looking at the ‘world of MS’ from 20 years ago to now, it seems that disability rates have improved, along with patients Quality of Life.

I know that a lot of the MS medications available have side effects that are associated with the treatment, but the way I look at it is, at least we have options. We aren’t without medications to help slow our progression anymore. We also don’t have to all take ONE certain medication either.

I haven’t been one of those patients with MS, who gets on and stays on the first medication that I chose. Not one medication works for everyone living with MS. I have changed medications multiple times since my diagnosis, not because I ‘wanted’ to, but because I needed to.

So, the question people ask me a lot is, “Why do you choose to medicate, if you have failed multiple treatment options?” This isn’t an easy question to answer by any means. For one, I’m scared. I’m scared of the unknown… I’m scared to know what would happen if I didn’t medicate. Even though these medications don’t promise to STOP progression, they have shown to slow it… and I really don’t want to know what my life would be like if these medications weren’t slowing at least some of my progression.

Another response I have is, why not? What do I have to lose? Before I actually got diagnosed I was miserable and could barely function, and ended up being in a wheelchair. (I am no longer in a wheelchair, by the way.) I’ve already been at my lowest and it’s not somewhere I want to go again.

Whenever you read anything about multiple sclerosis, it states that it is a progressive illness. I don’t want to take my chances to see just how ‘progressive’ my disease can be.

So, as long as there are options available for me try, I will. I know that having flu-like symptoms with an interferon, or GI issues with Tecfidera aren’t pleasant, but the truth is, it could be a lot worse if we don’t deal with those side effects and get on a treatment.

Now I’m not just saying I play ‘eenie-meenie-minie-mo’ to choose a medication – this takes a lot of research and discussing these options with my neurologist and family. Something I use when wanting to compare the medications is MSAA’s S.E.A.R.C.H. Program. There are many resources available to those with MS when trying to decide which medication to take, so make use of them.

The medications available to MS patients have been increasing since I was diagnosed in 2010. Try to stay informed and educate yourself about what’s going on with MS Clinical Research. This way you know if a new medication for MS is on the horizon.

MSAA even has a Research Update publication that you can check out to learn more. As most of you know, I’m a volunteer for MSWorld.org, and we attend Multiple Sclerosis Conferences, helping to keep everyone at home up-to-date on all things MS. You can view all of MSWorld’s Conference Coverage at the Conference Center or YouTube Channel.

Best Wishes!

Ashley Ringstaff – Volunteer for MSWorld.org

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Spring into Action

Spring into Action

Well, it’s officially spring… although I know a lot of people up north would disagree with the cold weather… but I thought I would talk about some of things that I do to “Spring into Action” around this time of year.

Since the weather is actually REALLY nice in Texas right now, I’ve been trying to spend a lot of time outside… and for those of you who enjoy the outdoors as much as I do, there are some things we need to take into account. Like… how long should we stay outside? For me, it’s all about reading the signs my body gives me. If I start to feel overheated, I go into shade, or go inside. If I’m REALLY overheated, like I get in the 100+ Degree Weather we have in Texas during the summer, a cold shower always helps!

Now, before it gets TOO hot outside, there are some things you can do that will help you manage the heat later on. Do you have any MS Cooling Packs? If not, I highly recommend checking out MSAA’s Cooling Distribution Program. I’ve come to find that the Cooling Neck & Upper Spine Wrap, from Polar Products, really cools my core temperature. Also, there are those little Wrist Cooling Wraps that help as well. Also, when sitting outside on those hot summer days, I LOVE my Cooling Seat Cushion. Now these are just my personal opinion that I’ve found through trying different types of cooling products that help me out, and that I also don’t have to put on under clothing.

When it comes to any type of cooling product used for Heat Intolerance & MS, I feel like it’s a personal preference. The ones listed above are what I use when I’m just sitting outside, watching the kids play, etc. But when it comes to doing things outside like going on walks, yard work, etc. This is when I would use my Cooling Vest. There are A LOT of different types to choose from, so again, personal preference. By clicking on any of the links above, it will take you to different things offered by Polar Products. But there are other Cooling Product Companies out there; I just listed the ones that I have personally used.

Now, I know that a lot of us made some promises to ourselves for the New Year to become more active, eat healthier, etc. I’ve been doing that… and I have a gym membership… and I can say that the exercise that I can do the easiest is swimming. I did make sure that the gym I got a membership to had an INDOOR pool, because with the way the weather has been lately, you never know what you’re going to get.

I’m not going to say it was REALLY easy beginning exercising regularly again, but I do enjoy it. I think one of the most frustrating things I’ve been dealing with is the fact that I was so used to what I was able to do BEFORE I got MS, when I was in Athletics in school, Swim Team and things like that. But I’ve come to the realization that if I don’t want to overdo and aggravate my MS & MS Symptoms, that I have to make a new routine. It takes time, but I feel like I have more energy now. I don’t go to the gym every day, but I do try and walk a little bit on the days that I don’t.

Now about this whole “eating healthy” thing… let me just say that I am a born & raised Texan, and I love my southern food and Mexican food… so this is a REALLY tough issue! I’m not being REALLY intense with it, but I am watching my portions and things like that. I won’t ever be able to stay away from carbs and all of that yummy stuff that I crave, so I decided I wasn’t going to make a plan that I wasn’t going to fully stick with. But by watching my portions and having small snacks in between meals, it’s pretty easy, for me anyway. Oh, and let me just tell you that I am a VERY picky eater and don’t eat the suggested fruits and vegetable intake that you’re supposed to, but I did find a yummy supplement at a health store that I mix with water in the morning and drink that with my breakfast (it tastes like candy, by the way) and that way, I have had my “suggested daily fruits and veggie intake.”

Okay – I hope I didn’t overload you with all that information, but I did want to cover a few of those topics that I know are really popular right now. I hope everyone is outside enjoying the weather- if it’s not too cold, that is.

For more information about Resources for your MS, check out MSWorld’s Resource Center.

Best Wishes!

Ashley Ringstaff – Volunteer for MSWorld.org

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My MS New Year’s Resolutions

So, the usual New Year’s resolution has to do with being healthier, losing weight, etc. I’ve decided to make a resolution, but it has nothing to do with what I just listed.

So what’s my ‘big’ resolution? I plan on working on not being SO STUBBORN! I know that seems odd, but if you continue reading, you will understand.

I am a very stubborn person in many aspects in life, especially when it comes to my MS. Here are some things I plan on being less stubborn/hard headed about:

  • When someone offers me help, when it’s obvious I’m having a difficult time, I’m going to try and accept the help that is offered instead of being stubborn and trying to do everything on my own. While we don’t want our independence taken from us, and we like to do things on our own like we used to, sometimes it would make life easier to accept the help that is offered because that offer is coming from someone who obviously cares.
  • When my MS gets in my way of doing certain things, I’m usually too stubborn to stop what I’m doing or just take a break. I try and push through it all, but in the end I seem to suffer more in the aftermath of it all. So, I plan on ‘listening’ to my body & MS better, which will of course get on my nerves, but I believe it will benefit me in the long run.
  • When a loved one asks how I’m doing (and isn’t just asking it to be polite), I will not be so stubborn and disregard their question with an, “I’m Fine” answer… if they’re someone who genuinely cares about how I’m doing, I will give them a genuine answer. By doing so, I’m hoping that it will ease some of the tension I gather when holding all the information of “how I’m feeling” bottled up inside.
  • I’m also going to work on not being so stubborn about ‘remembering’ things. I always tell myself that I will remember a certain bit of information and I don’t need to write it down… but I end up forgetting the information in the long run, so I’m going to start making notes on my phone or a small spiral notebook.
  • Finally, I won’t be stubborn at my neurologist’s office, and I will ask the questions that need to be asked, and I will be completely honest when answering questions. I’ve realized that by being truthful about how I’m feeling, which isn’t good all the time, I’m not showing any weakness, but I show strength by being able to communicate this information.

So that’s my New Year’s Resolution…what’s yours?

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Making Commitments When You Have Multiple Sclerosis

Before I got diagnosed with MS, I would make plans, mark off the ‘Attending’ box on RSVP’s that I received,and I could also just up and do something if there were plans made abruptly, without a second thought.

That’s not the case anymore; I can tell you that much. And I have a feeling I’m not alone on this…

Now, I’m not saying that since I got diagnosed with MS that I don’t want to attend certain events or go out with friends, etc. I still want to do those things; there are just different circumstances now.

I really hate cancelling plans that have been made or not attending something, (like a wedding) that I had replied I would be attending, but my MS isn’t on a “regular schedule.” I can’t tell people, “Well, on Monday, Thursday & Sunday my MS is not cooperative, so I can only do things on Friday & Saturday.” If only it were that easy, right?

So the reasons I don’t like making commitments to plans are because I don’t know how I’m going to be feeling on that day… or at that particular ‘part’ of the day. I know it seems as if I’m “blowing people off,” but that’s not the case. If I said I wanted to attend something, it means I really did. My MS is just not “allowing” me… Kind of like it’s grounding me, like my mom did to me when I was younger.

So now, when people invite me to do something that evening… or the upcoming weekend, I tell them… “I really want to! But I don’t want to make any promises, so let’s see how I’m feeling when the time comes.” For those people who are close to me, they understand my reasoning for saying this… others don’t, and I have to explain, which can be difficult with people who don’t have MS, or who do not have a lot of knowledge of the illness.

My main message on this blog… “Yes, I want to do things…. But sometimes my MS has other ideas that I can’t control!”

 

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Keeping Track of your MS

I thought I would share a “tip” on how I keep track of my MS – so I’m able to recall things when needed or share information with other members of my health care team (who are not my neurologist).

So here is what I’ve done. I went and bought a HUGE binder… and I requested all my Medical Records… Personally, I had to get medical records from my diagnosing neurologist (general neurologist) and my MS Specialist neurologist. But I also got my records from all my other doctors.

I find this a lot easier when I need to recall past treatment… while I can sit here and name off MS treatments I’ve taken, I can’t always recall the dates in which I was on certain medications and/or received a specific treatment for something.

My medical records binder also includes my MRI reports. I also requested my MRI reports from the radiology clinic, because I’ve found that when I have a followup appointment, and I have the records on hand… it’s easier to go over with my neurologist… especially since results can take some time to be sent.

Now let me say that this is a work in progress… because I’m always getting more medical records… I usually collect them after I have a “change” in my health… or every 6 months.

I also take the time to place my records in order by date. So it’s kind of like a binder timeline of my MS…

I’m currently working on getting dividers for the binder. While I like things in order by date, I thought it would be beneficial to categorize things further, for example: Primary Care, Neurologist, MRI Reports, etc. I’m also contemplating getting a small binder for each category, so if needed, I can take a binder with me.

It’s all about personal preference… and honestly… some people could carry their medical records with them at once… but I have A LOT of records, so that wouldn’t be so easy.

It may not be needed a lot… but I can tell you that I’m very happy that I requested my records… because it has helped me make  decisions since I was diagnosed. For example, I decided to change from my diagnosing neurologist, to a specialist. I had been contemplating the idea, but then  I went over my medical records and I saw that there were things documented in the records that were “discussed” with my mother and I… that actually were NOT.

Just know that as a patient, you have the rights to your medical records. You never know when they might come in handy and they may help to keep you on track.

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Dealing with Changes in Weather When You’re Living with Multiple Sclerosis Symptoms

Well, I can honestly tell you that I’m looking forward to the change in weather. Dealing with multiple days of 100+ degree weather is NOT fun.

The heat really bothers my MS, but then again so does weather change in general. I know I’m not the only one… but it’s really hard to deal with the way my MS “acts up” when the weather changes… it’s not something we can control (obviously).

By keeping an eye on the weather forecast, I know what to expect, but I also know that when the weather changes (which it drastically does in the great state of Texas) I need to take it easy. It sometimes feels as if my body is protesting the weather change… it doesn’t help that I have arthritis as well, from being a walking accident most of my life and breaking bones non stop.

I know everyone that lives further north, has a hard time dealing with cool weather, but I don’t have that problem, and I frequently joke on how I want to live in Alaska, or something. Where I wouldn’t have to deal with the constant heat here in Texas!

One way I’ve found to “help” my body’s aches and pains from the weather change is taking an Epsom salt bath. It really helps me relax, and I make sure not to have the water TOO warm. But, it does ease the ache my body gets when the weather is changing.

That’s all I have found that helps a little bit, when dealing with the weather… but I would love to hear how others cope with it.

It’s too bad we couldn’t conquer an Island, and name it MS Island, where it’s a wonderful 70 degrees outside constantly… One can dream :)

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Getting a Second Opinion When You’ve Been Diagnosed with Multiple Sclerosis

So when I was diagnosed with MS, a general Neurologist diagnosed me. Everything was so hectic at the time; I was just trying to understand what was going on … and why I needed to get IV Steroids…

I had never heard of MS, so I was trying to find out everything I could about it. Once the initial shock wore off, I had multiple people ask me if I had received a second opinion. At the time, I was getting aggravated, wondering why everyone was in denial, when I was just trying to cope w/ the changes going on in my life.

I finally decided to get a second opinion, not only from a different neurology office, but also from an MS Specialist.

I can honestly say, that was the best decision I had ever made. Come to find out my general Neurologist was intelligent, yes, but didn’t know as much as my MS Specialist did, and it turns out I was being over medicated on things…

I honestly don’t think I would be where I am right now in living with MS, if I hadn’t gotten that second opinion, which others were suggesting I do. I later learned that a lot of people get a second opinion, or want to see a Specialist in the MS field to ensure they are receiving the best care possible.

I know some people who have had more than 2 or 3 opinions on their diagnosis, and I’m glad I only had to make one change in neurologists, rather than keep on searching.

It’s very odd to think back and see the difference in the opinions of my previous and current neurologist. While they are both very well educated, they just treat their patients differently than one another. Which, in this case, was a VERY good thing. (Did I mention that my diagnosing neurologist stuck me SEVEN times, yes that’s right SEVEN times, to get my spinal fluid for a lumbar puncture aka spinal tap.)

I think all patients should exercise their patient rights… if you aren’t comfortable with your current neurologist (or any physician for that matter) you have a choice to find someone you are comfortable with. It’s a VERY important matter, considering your health is in their hands, so to speak.

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Staying Active with MS

Usually when we hear “stay active” people are referring to some sort of exercise. But, that’s not what I’m implying when I say it, I like to keep my mind active.

And I don’t mean keep your mind active by stressing about what’s going on in your life or how your MS is affecting you that particular day. I mean, test your brain. Play some games online that really make you think; get  a crossword puzzle book; or you can play games on Facebook, like I do!

However,  if it’s one of those days where you just don’t even want to think too hard, because your head just can’t handle it, get lost in a book! That’s my favorite thing to do! I don’t sit there and worry about what’s going on in my life when I get lost in reading a book that I can really get into.

I can’t even describe how time goes by when I’m doing these things and how I don’t worry about how I’m doing with my MS, or anything else going on in my life. My brain is being active, but not to the point where it’s stressful, it’s relaxing. Something I really enjoy that we do at MSWorld.org is every Friday Night at 8pm ET, we play “Trivia.” One of the chat hosts puts together an hours worth of trivia, and the whole chat room plays.  It’s nothing that is a “competition” or makes you think too hard, it’s really fun and gets you thinking!

Of course, it’s always good to stay physically active with MS… that’s a given, but I like to have a workout session with my brain more often than physical workouts! Needless to say, the only physical workout I can endure with out “over doing” or hurting myself is swimming. And I’m not just talking about hurting myself from doing too much, but I have made a fool of myself at the gym because I’m a walking accident!

So since it’s Summer time, take this time to enjoy and get your brain working, but in a fun way!

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Preparing for a Doctor’s Visit

Okay, so we all go to doctor’s appointments… and we have to get there early, in order to fill out paper work… and while we’re filling our paper work in the doctor’s office waiting room, we have to try and ‘remember’ everything that we need to write down for the doctor.

So I’m going to share some things that I do, in order to prepare for a doctor’s visit… without forgetting information that needs to be shared.

For starters, I keep a journal. In my journal I keep note of any changes in how I’m feeling or how I’m reacting to medication. It’s also very handy, when I need to write down a question I want to ask my neurologist, and if I don’t write it down right then… I’m going to forget, even if I tell myself that I won’t.

Something I always have on me when I leave the house, (as well as at home saved on my computer), is a medication list. This way, if something was to happen and I have to go to the ER or anything like that, my medication list is always with me.

I can also say that I would be completely lost, if I didn’t program alarms on my phone for upcoming appointments, and to even take my medications! Yeah it’s annoying, but I don’t forget!

Having a list of my medications as well as my journal of how I’m feeling and how I’m doing on medications, etc., really helps when I go to see my neurologist. It also cuts down time that I have to fill out paperwork, which can sometimes be troublesome as I also have issues with Upper Limb Spasticity (in my hands) mainly in the summer months, so it’s not always “easy” to fill out paperwork.

One of the benefits  from keeping things written down  in my journal is that, my neurologist can see what triggered me not feeling better… like I stated earlier, my spasticity gets worse when it’s hotter outside, so I know what has caused the increase in my spasticity. (Mind you, I live in Central Texas, and it’s almost always hot here… so let’s just say “hotter”… like today’s “Real Feel” is 102 Degrees Fahrenheit.)

Now, I don’t carry around a small notebook with me anymore, but I do use my phone to keep notes on how I’m doing. You have to enjoy and embrace technology these days, as the famous saying goes … “There’s an APP for that.” (MSAA does have a mobile phone app, My MS Manager, which offers a journaling feature) It’s all true.

One last tip, if you’re the type of person to forget things easily, like I am see if your doctor would mind if you brought a voice recorder to your appointment. This will allow you to  play back the visit and conversation to yourself when you’re at home. This is especially helpful if your doctor answered some of the important questions you had been waiting to ask.

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