MS Warrior Series – Katie Caputo

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I met Katie Caputo on Instagram close to six months ago. The fire and strength that you hear in her voice in conversation, or  hear on her instagram stories is more than inspiring. Although recently diagnosed she hasn’t taken the news lying down  Read below to find out more about this incredible firecracker or a woman. 

How do you describe yourself? 

Katie

Does MS take a front seat or a backseat in your life? 

I’ve been diagnosed for 8 months now and I have to say it’s taken the front seat for the last 7/8 of them. In the beginning I was in and out of a flare up, and learning how to deal- and I still am, so everything that was in front of me wether it’s emotions or a new symptom, It was MS related. Now that I’m getting my “foot work” and learning what to expect, and having such a great support system – it’s kind of taken the back seat, especially because I feel good. When you feel good, you don’t think of the bad. 

What keeps you going? 

 Learning new things about the disease, and other warriors stories is what keeps me going. MS is such a wide spectrum as far as individuals and their symptoms. Every person is so different in their own way. No one is the same. And that blows my mind. How can we all have the same disease, and essentially, be all different? So the studies keep me going. The getting to know other people. But also, the fight in me.

Do you challenge your doctor or do you accept their word as gospel? 

I’ve been with my doctor for 11 years now. Longest relationship! I never used to challenge him UNTIL I started connecting with other warriors and friends in the MS society. Once I started finding out more info from others, I was curious, and would ask questions. I would ask about things that aren’t even up my alley yet. He knows I’m not MS’ing around, as no one should with their health, but I’m def the hard ass with him.               

What do you want or  wish people knew about you?

I used to HATE being home. Hate laying In bed on a day off. I don’t like to waste a minute of spare time. Now, my spare time, heck even most of my time is spent at home, in bed. My life changed; but I’m forever grateful. Sometimes I’m angry but I’m learning. I’m learning how strong my body was actually built, and what I was made for. And I won’t let it beat me. #DONTmsWITHCAPUTO

To continue being inspired by Katie or to learn more about her journey follow her on her instagram below: 

Instagram 

#Goals

Happy New Year! I know its February, but I’m just going to be honest with you. My new year started in February this year and I’m not mad about it.  Let’s talk about goals

Oh yeah, #Goals.

I’ve thought a lot about this although this year is a little different than most years- I usually have my goals at least thought about before the beginning of the year- but unfortunately this year I was a little stuck. When I asked myself what it was I wanted to accomplish I went blank. Like literally my mind was like a blank slate.

So I decided to start small, maybe I need to just look at how I can set goals around my health. As we know if we don’t have health we don’t have anything, right?

The question that came up was: How do you define wellness?

I think a lot of us can agree that it is a connection of mind body and soul. If that’s true what areas of your life can you work on to achieve an optimum goal of mind body and soul

  • Diet/ Exercise
  • Emotional Wellbeing
  • Spirituality
  • Cognitive Wellbeing
  • Work-life balance
  • Relationships

Now that you have that how can we make sure that we are accomplishing this goal?

I think we have all heard of SMART goals and while I agree with that system,  there is also the PAUSE system:

  • Plan your strategy – let’s make a plan plan
  • Account for change – don’t be afraid to go back to the drawing board
  • Understand your barriers – who, what, when, where
  • Slow your pace – it’s a marathon, not a race
  • Exercise your options – there’s more than one way to get home

Dealing with this illness I’ve learned to be agile, so I like that this system makes you think way outside the box, and I love the last bullet. “Exercise your options”.  Basically, there’s more than one way to get there, and if someone tells you differently tell them to kick rocks.

I encourage you to think about the different areas of your life and if you haven’t already make a goal on how to optimize one or all areas of it. Let’s make 2019 the best health year yet!

Whatever your goals are this year, if they are as big as biking the MS150 or as small as making sure your health team is connected- which is a feat in itself- just remember there’s no right way to reach your goal, its a marathon not a race. Breathe!

Happy 2019! Let’s crush it!

The D word

We MS’ers know the feeling… the sudden wave of anxiety, crazy bouts of insomnia, bone-crushing fatigue, and loss of energy that lasts for days. Difficulty concentrating or the inability to make a decision, the feeling of rage, the crushing feeling of our world closing in on us, or my personal favorite the feeling of hopelessness. That feeling of no matter what – this moment will, in fact, live on forever.  Your life will continue to be nothing more than waking up, taking pills, watching TV if your eyes will allow it, and going back to sleep. It will never get better is your thought.

Never.

These thoughts and feelings are common in the MS Community. It is said that the most common symptom of MS is depression, in its various forms.

And it’s not surprising, Multiple Sclerosis is one of the most debilitating diseases and the worst part is you never know when an attack is going to reveal itself. If your MonSter is anything like most, it comes to play at the most inopportune times.

Let me give you a recent example:

MS: Oh you’re planning to go out of the Country tomorrow? Cool! But first, let’s give you problems speaking, and walking.
Me: *heavy eye-roll* as I choke down steroids for what feels like the 100th time. Hoping I will regain my ability to speak and walk before my 17-hour flight.

Now, this example isn’t so horrible, but live this life long enough and scenarios like these can become downright miserable if you let it.

So what can we do? What can we do if we live this funk? If there isn’t any light at the end of the tunnel and no matter how much you love Grey’s Anatomy, if you see Meredith Grey ugly cry one more time you might just lose it, for various reasons?

I thought a lot about this and then decided to do some research.

These are the top 5* strategies (besides medication) I found for helping us beat depression:

1. Exercise: Even though it’s the last thing you want to do or feel like you can do its important. When you exercise your body releases a chemical called endorphins the endorphins make you feel better. No one is telling you, you have to run a marathon, even walking around your house once a day or doing little stretches as your watching a show or in bed can help you feel a little better.

2: Make a stress Management program – Try meditation, yoga or guided-imagery meditation.

3: Talk about your feelings – This might be a “duh” type of suggestion, but let’s be honest a lot of us most of us don’t do it. We’re too concerned about not wanting to bother our loved ones, thinking they/no one will understand, or maybe just not having the words. The thing is if we keep these thoughts/feelings bottled up inside its only a matter of time until we explode. If you don’t have someone to talk to reach out to the National Multiple Sclerosis Society, MSAA or join a support group of people who are going through the same thing you are. These three places will be skilled in helping you and will provide you with more resources to help you through this.

4: Commit to one activity each week: A friend of mine suggested I do this a few months ago. He suggested that I chose one thing to concentrate on a month, and every day tell myself “I will, I can, I must, XXX” The hope is the simple act of being accountable for doing one thing will make it easier for you to do more things, making the depression haze lighter, and giving you a feeling of purpose.

5: Create a gratitude list: By shifting your focus from the bad to the good, you will create a moment of pleasure. It can be a something as small as I took a shower today, or I left the house for 10 min and walked around the front porch. Both of these things are major accomplishments and should be celebrated.

Whatever you decide to do to try to kick depression is great, and should be celebrated!

Your life is too precious to feel this way

P.S. Another thing is to make it known to your health care professional that you are feeling this way. You might not even know you’re depressed. You might just feel down, or have minor feelings of agitation. Whatever the case may be it doesn’t hurt to bring it up. If you don’t feel comfortable talking to your doctor about these things or feel like he/she won’t be responsive, I urge you to find a new doctor if you can, it is so important for you to have a good relationship with you Dr. However, If finding a new doctor isn’t an option please reach out to the NMSS or MSAA for help. If you’re having thoughts of depression please reach out to the National Crisis Hotline

National MS Society: MS Navigator: 1.800.344.4867
MSAA: 1.800.967.0398
National Crisis Hotline: 1.800.273.825

SAMHSA National Hotline: 1.877.726.4727
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For more ways to help cope with depression, click here

What About Kale?

After my diagnosis I like most of the MS population was put on a Disease Modifying Drug. My drug? Copaxone. It was good for a few months and then it wasn’t.  

Post diagnosis, like most people, I researched. I mean, I felt like I was back in school with the amount of researching I did. But this time it was different…I was researching for my life.

Why do I have to take these drugs? It’s a progressive disease. Why can’t I just pour coconut oil over this and prat it gets better. What about Kale?

Well after a few  months of being on the drugs and feeling like total crap I got desperate. I took all the research that I had done and decided that was it! I stopped the injections, bought the oils overhauled my kitchen and threw away everything that wasn’t “healthy”

Processed food? Gotta go.

Diary? Adios

Pork? See ya

There is currently a study that is being done at New York’s Mount Siani Hospital by Dr Iliana Katz Sand, where they are looking at how food might be the medicine to combat MS. This  new study uses the microbiome (a bacteria that lives in the digestive tract) and diet. Mostly they are trying to see if it is possible to reprogram the immune system to inadvertently slow down the immune systems attack on it self.

You might be thinking, well what about the meds? I hear you! I’m back on mine – not by choice. However it doesn’t hurt to put the facts out there. About 70% of the immune system is made up from the gut . So it only makes sense that what we feed it will have a direct impact on how we feel right?

So what are they eating? They are all following a strict Mediterranean style diet. Basically trading in the processed food, dairy and meat for fruits, veggies and whole grains.Why these foods? They are thought to be anti-inflammatory.

I’m not sure why this is such a new concept – the gut and how it affects the entire body, but it is, and the research and studies that are being produced are pretty incredible. The phrase you are what you eat is not just a saying any more folks!

For more information on this study and Dr. Katz Sand press here

I Should Write This Down…..

Brain fog, it’s one of the many amazing symptoms of MS, and it affects nearly all of those with this neurological disorder.

While there are great apps and strategies out there to help you with your memory, when the fog rolls in, it’s no picnic, pun intended. For those of you not familiar with Brain Fog, it can be described as an episode of mental confusion that comes without warning. It can be hard to focus, to recall memories and can cause a decrease in accuracy. [1]

I remember being at work and trying to explain a new procedure to a colleague. In the middle of explaining this new concept (that I came up with, mind you) I completely blanked out. It was as if I had the entire plan written on a white board and someone came and erased it right before I got to tell it! After about 5 15 minutes of trying to calm down and recollect my thoughts, I was able to tell them most of the plan,  but ultimately had to reschedule time with them to go over it again.

That fifteen minutes consisted of me breathing deeply and trying my hardest not to focus on what I was just talking about, or the lack thereof. Thankfully, the person I was meeting with was super understanding.

When MS is involved the cause of Brain Fog is said to be due to the loss of myelin sheath around the nerves. Without this protective layer the brain has difficulty with transporting memories to storage areas of the brain, or retrieving form storage areas. [2]

When MS is not a factor the following can be blamed

Stress

Menopause

Lack of Sleep

Poor Nutrition

Diabetes

Nutritional Deficiencies

Medications

MS or not, either way I think that we can all agree that it sucks! So what can we do? I’ll tell you!

These are my top five tips for dealing with the fog…

  1. Take a break– most times if it comes on strong and fast you might be overwhelmed and get a little out of sorts- step away, stare at a wall, take a walk, whatever just stop trying to make yourself remember. Because news flash- you probably wont.
  2. Tell your Dr. – I admit it I’m not the best at telling my doctor like, anything. I’m the absolute worst. But when I do remember to tell him what’s going on he gives me a solution. Go figure!
  3. Exercise – Get physical. I don’t know what it is (probably Science) but whenever I work out, even if it’s for 20-30 min I feel better and the fog doesn’t come as much.
  4. Talk it Out- I remember when I was going through a lot of changes, the fog being one of them. I mean- I can be a little ditzy some times, we all can. But, when the fog came the first few times around I was like, um…so this is horrible. This needs to stop. I have shit to do! Mostly, I was just embarrassed. Finally, I talked to someone I trusted, who doesn’t even have MS, and just talking about it made me feel better. Like it somehow made it not such a big deal. So… talk it out!
  5. Mind games – Its like exercise for you brain. Seriously guys, keeping your mind sharp is the biggest way to help with this. So whether it is reading, using the an app like Luminosity, or doing crosswords, the more you can use your brain the better.

For more information on Brain Fog, check out the links below:

WebMD

Livinglikeyou

Health line

[1] http://www.nutrex-hawaii.com/common-brain-fogfatigue-causes

[2] https://multiplesclerosisnewstoday.com/blog/2016/09/06/feeling-your-way-through-ms-brain-fog/

A Little Care And Tenderness

Did you know June is boring Self Care month?

This weekend was the perfect time for me to practice Self Care, I say this loosely since not only was my attention span limited but also my energy. I took full advantage of some of what @makedaisychains had listed as some of the Boring Self Care rituals.

Her list spans from taking a shower, doing the dishes and remembering to breathe. I don’t know about you, but the last one is a good one! There are countless times where I have had to literally remind myself to breathe. Does that happen to you?

Its almost as if you are waiting for your body to throw something else at you or for someone to respond negatively towards you that you literally hold your breathe as a defense mechanism. Am the only one here? Bueller?

 

Anyway, like I said I did some boring self care this weekend and shared a little bit below, but what I’m really excited about is the list I found below

 

Saturday- I took a shower. The shower took everything out of me. I had to take a nap afterwards due to the amount of energy it took. But, I took one! Not a year ago I would of forgone the shower and stayed in bed staring at the TV screen. After my shower – induced nap I felt a little bit better. I was clean and had somewhat of a rest. I made it out to run and errand and get chipotle to eat, but that was pretty much my day. Shower, nap, errand, eat, go back to bed and sleep. I guess my GTL days are over.

 

Sunday- I Did the dishes and made a meal – sort of. I definitely did the dishes and loaded the dishwasher. I had a little lot more energy Sunday compared to Saturday. I was able to go to the market and get groceries, something I would have had Instacart do not too long ago.

During one of the many breaks in between cooking, I did some perusing on the internet about what others were doing for self care month or in general. I came across a great list on a website called uncustomary.com – Check it out when you get a chance. Anywho I thought the list was something that we could all use, whether you are a Spoonie or not. I’ve listed some of what I found on Uncustomary and also listed a few of my own.

  1. Ask for help- how many of us actually do this? I know it is, and has always been really hard for me to ask for help. This didn’t come with MS, this has been a struggle for years.

 

  1. Make a Self Care basket- THE BEST IDEA. Fill it up with comfy socks, a heating pad, favorite movies, essential oils ( my go to is frankincense), a journal, and a pink mug for tea, water, or wine)

 

  1. Appreciate the body you have, not the body you had – speaking to the congregation

 

  1. Find Dr’s or Specialist you trust- I cannot stress this enough! You have to trust the people that are treating you, if not then what’s the point? Make this a priority!

 

  1. Acknowledge that you will have horrible very bad days. Its okay, its part of it – ride the wave -Because they will always end, and then you’ll have amazing very GOOD days.

 

  1. Treat your energy like currency- can you physically afford this? If going to an event will take everything out of you, and maybe take from the next day(s) its not worth it. Tell them you cant go and don’t beat yourself up about it. Shit happens.

Which brings this to the next one

 

  1. Keep only those around that “get it”. What do I mean by this? If you have people in your life that make you feel like you’re hard to love, or make you feel like you’re an inconvenience tell the bye!

There’s nothing worse than walking on eggshells with people because they either don’t understand or care to understand what you’re going through. It’s their problem and not yours show them the door, close it, and then keep it closed.

#Feliciabye

 

  1. Find something to believe in, I was Christian before my diagnosis, but didn’t really start having a relationship with Jesus until after my diagnosis. My relationship with him definitely makes the hard days easier and sleepless nights not as horrible as they could be.

 

  1. Make a routine- I know it can be difficult, its something I struggle with, but it makes things easier. Even if it’s just a routine for the morning when you wake up. Having control of that little bit of your day helps the day go by smoother- try it. I promise you won’t be disappointed. And if you are, all you risked was a morning.

 

  1. Make goals and keep dreaming- Just because you were diagnosed with something doesn’t mean your life ends. It could just be the beginning.

 

  1. Drink Water – Seriously, we are made mostly of water so rehydrate your self! Your body will thank you I promise, and you’ll probably feel a little better once you do.

 

  1. Share your story- I was reminded by a lady today that if you have a testimony your praises become stronger. And we all know you can’t have a testimony without a test. So go through it, do your best everyday and share that story! You never know who you could be helping by sharing your truth.

 

 

For more comprehensive list check out uncustomary.com