You’re Hot and You’re Cold

There’s no doubt that weather can have a marked affect on MS symptoms, but the question we posed to the MS community is: which season is worse for you? The community was evenly split between the two seasons-–for some, the summer heat can be unbearable, but for others, the bitter chill of winter is enough to make you research human hibernation.

See what they had to say and which faction you below to:

Baby It’s Cold Outside

  • Everything is sensitive
    • Even a slight chill causes bone-shattering pain for me
    • Even temps of 50° can leave my feet blistered with frostbite. My shoes in winter are 2 sizes bigger, just to accommodate extra socks.
    • My skin feels like it’s covered in needles
  • Can’t control the spasms
    • Cold causes major muscle spasms in my feet, legs and back!
    • My legs hurt from muscle spasms and I’m even more clumsy because my hands are numb
    • Cold makes me spasm more
  • My muscles are stiff and painful
    • Just being outside for 10 minutes in the snow and I lock up like a mannequin in a window
    • The cold kills my hips
    • My cold body feels stiff and won’t move
    • My legs are in constant pain in the winter

It’s Getting Hot in Here

  • Humidity is my kryptonite
    • Humidity is like wearing cement boots
    • When you add humidity to heat, I’m a dishrag – just done for the day
    • Humidity is intolerable – like having an anchor tied around my waiste
  • Heat sucks the energy right out of me
    • It’s a struggle to walk; I feel weak like I’m melting.
    • It makes each foot feel like 200 pounds
    • I have such a hard time walking; I call it drunk legs
    • I wilt like a weed in the Sahara!
    • Heat makes my muscles like wet noodles
  • I can’t think straight
    • Heat shuts me down
    • Heat causes my brain to just go flat, like I’m in a steam fog
    • My brain just doesn’t work in the heat

Stuck in the Middle with You

  • Any extreme temperature is awful
    • Extreme temperatures, either way, affect me very badly
    • Heat makes me feel rubbery and the cold makes me walk like Frankenstein
    • I hate extremes of both – heat makes me fatigued, cold makes me numb
  • I thought I hated one, now I hate the other
    • I used to say that heat was my kryptonite. It still is, but now I find that any mildly extreme temperature whacks me out
    • It used to be just heat but last year the cold was very hard too
    • My MS hates the heat, but I hate the cold.

The general consensus amongst the community seemed to be that 65-70 degrees is the ideal temperature, so spring and autumn take preference. But how about you? Which camp do you fall in—hater of heat or contempt for cold? With the colder months approaching, here are some tips to ensure you’re prepared for the impending weather!

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Giving Thanks

V2-2015-MSAA_Thanksgiving_Cards5This week many individuals around the country will celebrate Thanksgiving, a national holiday symbolizing the notions of graciousness and appreciation. This holiday and others represent different things to different people and hold varied meanings for all who celebrate them.  But a concept that can be universal and celebrated all year through is that of gratitude. Finding what you’re thankful for, no matter how big or small or different, is a part of this holiday tradition. Expressing your gratitude can help pay it forward and inspire others to do the same, and to hopefully further inspire acts of appreciation and kindness across our society. Celebrating the holiday can simply mean appreciating and reflecting on the words themselves-‘Thanks’ and ‘Giving.’

Please note that MSAA’s offices are closed for the Thanksgiving holiday on Thursday, November 26th and Friday, November 27th.

From all of us here at MSAA, please enjoy a safe and happy Thanksgiving!

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Responding To Comments That I Need To… (Fill In the Blank Here)

By: Stacie Prada

It personally bothers me when I read online articles telling people “What every person needs to do…”and presenting it as fact. They don’t know me, and what may work for the masses may not be appropriate for me.

A simple example of this is kale. Kale is very nutritious, has a lot of health benefits, and I feel good when I eat it. People with hypothyroidism or taking blood thinners need to avoid kale. What’s good for many people is not good for every individual.

It’s common for me to explain to people suggesting I take immune boosting products why I don’t. People think that because they’re successful avoiding or recovering from colds by taking immune boosting products that I should take them too. I’ll nicely explain that I take a disease modifying drug to suppress my immune system because it works too well. While I want to maximize my health, intentionally trying to trigger my immune system to start fighting isn’t good for me. I also explain that eating foods with anti-inflammatory properties does work well for me. We’re all different.

So while it bothers me to have someone tell me they have the answer to my problems, I respond to it the same way as if they’ve just made a suggestion. I’ll honestly let them know whether I’ve already tried it, I’m doing it now, I’ve tried it and it didn’t work for me, or that I’ll look into it. I have a mental list of things I want to try but am not ready to do yet. Some of them like doing yoga and seeing a naturopath took me years before I was ready to try them. When I did, they were a huge benefit to me and I wished I’d tried them sooner. I followed up with the person who’d made a suggestion and thanked her. I let her know I’d finally done it and loved it.

Response Tool Box: I like to think of communication as a toolbox with tools that we use regularly and others that don’t come as naturally. Sometimes we use our standard tool and it works great. Other times it takes three or four tries with different tools before we convey our message. I’ve found that the following methods have worked in response to comments that make me uncomfortable, that seem hurtful, or that I’m not up for answering in the moment:

  • The blow off: If a comment is too ridiculous or mean and you don’t want to address it at all: pretend you didn’t hear it. Focus on something or someone else and continue the conversation.
  • Incredulous silence: If you want them to know it was inappropriate or hurtful, a paused look of shock can work. And move on to something else.
  • Honesty: Say their comment is hurtful or too personal for your comfort level and you’d rather not discuss it. And move on to another topic.
  • The improvisational approach: Consider the comment as valid, build on it to the ridiculous and humorous conclusion, and laugh it off. It works best if your response really is funny and doesn’t embarrass the person who made the initial comment.
  • Find an advocate: Turn to a friendly face in the group and ask what they think about the topic through eye contact or explicit words.
  • Connect: Find the kernel of accuracy in what they’re saying, and comment on how that is true before explaining more about your experience.
  • Insight: Someone has said something completely foreign to anything you’ve thought before. Say that’s interesting and you’re going to think about it.
  • The delayed response: Sometimes a comment sticks in my head long after the conversation is done. I allow myself permission to bring it up later after I’ve thought about it. There’s no time limit to letting someone know that something they said made an impression on you.
  • Reschedule: If my energy is low or the event isn’t really conducive for the conversation and I really would like to discuss it another time, I’ll tell them.
  • Defer: There is a lot of information on the web about this topic, and I’m still learning all the time. I know some terrific websites and articles that can explain it much better than I can. If you’re interested in them, I’m happy to send them to you.
  • Question: See if you understand their questions accurately. Ask them if your understanding of their question is correct. Ask them to tell you more about why they’re asking. Sometimes people ask leading questions because they want to tell you something. Let them.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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Talking About MS

By: Stacie Prada

Over the years, it’s gotten easier and easier for me to talk about my MS and respond to questions and comments. When I was newly diagnosed and didn’t understand how MS affects my body, I felt a little anxious when people would bring up the subject expecting me to have all the answers. And sometimes I was just too fatigued to have the energy for thoughtful discussion.

I went from knowing nothing about MS to being an expert in how MS affects me. It took a lot of time and effort, and it’s helped me to manage my health better and be able to respond to questions and comments. Now I think of MS conversations as more of an opportunity to connect than a list of pat responses.

Lose the guilt: I think a lot of my anxiety in these early conversations was due to me not wanting to accept that MS will affect my life. I wanted my will to override the physical restrictions MS was placing on me. It took time for me to fully accept that I can’t control or outsmart my body and do everything I used to do or want to do. While I was holding on to the feeling of inadequacy, I couldn’t discuss my MS without feeling a little shame or guilt. And that mindset makes every conversation uncomfortable for all parties. Accepting I can control some things and not others allows me to talk about my MS with confidence. MS is not a character flaw; it’s a medical fact about how my body functions.

Assess the situation: Think about the event and make a goal. Is it to get through the occasion? Is it to have fun and avoid drama? Is it to connect with certain people and have long, meaningful conversations? Each situation will lend itself to a different response.

Determine their motive: Why are they saying what they’re saying? Are they trying to be mean and judgmental? Or are they seeking assurance that you’re okay and they don’t need to worry about you? There’s a difference. A person genuinely trying to help deserves compassionate response. On the other hand, a miserable person that enjoys drama and putting people down is always going to win at their game. They’re too good at it. They’re not reading articles about how to get better at dealing with people they want to make feel bad. If you don’t feel comfortable talking to these people, avoid them if you can. Solicit someone to be with you that can help you cope, by either sticking up for you or diverting the conversation. Lashing out or trying to make the person feel hurt like you feel won’t help in the long run.

Consider the source: Is the challenge how that person interacts with you, or is it the topic that worries you? There’s a big difference. People that are consistently aggressive or love to put you down because they’re “just kidding” can be dealt with differently than people that are trying to be helpful but are pressing your buttons.

I try to remember if I’ve ever had a good interaction with this person and what made it good. It sometimes gives me some ideas for how to deal with future conversations. It’s also helpful to consider how informed this person is. Even if they know a lot about MS, I know they don’t know my body or experience as well as I do.

Know yourself: When we’re at the top of our game, we might be able to roll with an insensitive comment easier than when we’re tired, feeling overwhelmed, and experiencing MS symptoms. We all have certain things that make us uncomfortable. Knowing and accepting my triggers allows me to get through situations better.

Stay true to yourself. Be you. Be the person you like being. The interactions I’ve regretted have been the ones where I felt baited to respond in a way that doesn’t align with my core. Don’t let another person’s comment dictate your mood or change how you feel about yourself. This can be tough when you’re feeling low or frustrated that you even have to deal with MS at all. The guidelines I aspire to may be different than yours, but I’ll include them here as an example:

  • Be genuine and sincere. Coming from a place of anger allows them to diminish your feelings with justification. Coming from a place of curiosity and connection may not always succeed, but at least you can feel good about how you behaved in a stressful situation.
  • Be funny. Be willing to laugh at your situation if you’re able, whether they’ve made the joke or you have.
  • Lead by example. You teach people how to treat you by how you react and how you treat them.
  • If you blow up, make amends when you can, and forgive yourself.
  • Remember it’s a conversation and not a pop quiz or Q&A. The focus doesn’t have to stay on you. You don’t owe anyone a response to a question that makes you uncomfortable.
  • Remember you don’t have to be perfect, and neither does anyone else.

Invite Connection: Some people are worried about saying the wrong thing, and they may need you to give them permission to talk about your MS. When someone like this asks how you are, answer them honestly. And simply tell them that you’re happy to answer any questions they have. It lessens their anxiety and invites conversation. It also reduces the burden on you to figure out what they want to know.

Ask them what their experience with MS is. Have they known people with MS? What’s their knowledge about it? I didn’t know anything about MS when I was diagnosed, and I knew of one person socially that had MS. I’d seen her once with a walker and visibly struggling, and a year later saw her looking fine. Given my extremely limited knowledge of MS before I was diagnosed, I can relate to people that have no concept of MS or other chronic illnesses.

I’m glad when people have an interest in learning more, and I want to encourage them. Being a safe person to ask questions builds compassion and empathy on both our parts. I’ve learned a lot and come to a greater understanding about myself and others through these MS conversations. Even better, I’ve received a lot of support, felt good about myself, and enjoyed a LOT of laughs.

Stay tuned for part 2 to read about tips for responding to questions.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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Unwanted Advice During the Holidays: How to Cope?

By: Meagan Freeman

During the holidays, we may find ourselves in the idyllic, peaceful scenes depicted in a Norman Rockwell painting. Surrounded by loving family and friends, sipping hot beverages and laughing by a crackling fire. Along with those scenes, we often partake in traditional meals, full of wonderful foods and desserts. The downside of this beautiful family tradition might be the hazards of incredibly high calorie, high fat, high sodium foods that may take a toll on those with multiple sclerosis.

For the past 6 months, I have made tremendous changes in my own diet. I have made fruits and vegetables the focus of my diet, along with low fat, low sodium options. I have worked very hard on maintaining this way of eating, and in general, have been supported by my family and friends in this process. In a few short months, I saw dramatic reductions in my blood pressure (I have hypertension in addition to MS,) and I have also seen large reductions in my cholesterol. In combination with my medication, I have reduced the severity of my MS symptoms through this lifestyle.

Why do the Holidays seem to completely derail healthy lifestyle choices? I have already begun to hear comments from family, such as: Why don’t you just take a break from the diet? Why don’t you skip a few days? What is the big deal? Why are you being so extreme? It is amazing how quickly “tradition” becomes the priority at holiday meals, rather than health. I am a believer in the concept that healthy meals can also be incredibly tasty.

In addition to these dietary comments, we may also find ourselves being showered with the ever-present “helpful advice” from family members about how to best manage our MS. “Have you tried———?” I happen to be a licensed family nurse practitioner, and even with my medical background, I have family and friends who ask me this very question constantly. They send me articles about new research, suggest different alternative and traditional therapies, and question my treatment decisions with regularity. Sometimes I feel a twinge of anger, and I have to hold back an emotional response. Instead, I find the response, “Thank you for letting me know about that, I will look into it,” to be the best.

Sticking to our choices while being gracious recipients of unwanted advice can be especially trying during the holidays. The most important thing to keep in mind is that we are loved and surrounded by people who only want the best for us. This is important to remember when you find yourself at the Thanksgiving dinner table receiving your 50th comment about the food (or lack of) on your plate!

Happy Holidays!

*Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.

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Planning Around the Holidays

As the holiday seasons steadily approach, so do the holiday events and planning. Perhaps you have already received an invite or two, or are a part of an elaborate e-mail chain or Facebook group. For some, the mere thought of having to plan around the holiday season is stressful; and for those living with MS, an often unpredictable disease, the stress burden can increase even more.

So how do you tackle the holiday planning in a polite and self-determined fashion, while making sure to keep your health as a priority?

  1. Recognize your limits and be honest with yourself. Sometimes we are our own worst enemies when it comes to planning. We want to be able to do everything, but realistically, it is not in our best interest. Knowing your limit and sticking to it can help alleviate the overwhelmed feeling that is commonly seen in planning events.
  2. Have a game plan. Use a calendar to keep track of events and use this to track tasks that must be completed for these events. For example, you signed up to bring a side dish to a friend’s holiday party; write down the day of the party, and plan ahead the grocery shopping day and cooking day and build those into the calendar. This will help avoid the last minute day of dash to the store that often leaves you too tired to cook or even go to the party!
  3. It’s OK to say no! For some, this is an on-going struggle; but saying “no” from the beginning of planning is a lot easier than the last minute “I can’t make it”. Place yourself and your health first, and build around that. Use the prior two steps to build a holiday plan, and know which events to say no to.

Eleanor Roosevelt said “No one can make you feel inferior without your consent.” When having to say no to an event, don’t allow others to make you feel bad about yourself because you cannot attend. By choosing to place your health and wellbeing on a pedestal, down the road one day, you will see what was actually important and thank yourself.

What tips and strategies have you established to help manage holiday planning?

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It’s Beginning To Look a Lot Like…

The holidays…that’s right. They’re quickly approaching and if you’ve seen any advertisements or store displays you’d think it’s been here since the start of October. Right about mid-November straight into January are some of the most festive times of the year. Gatherings, parties and decorations as the sounds and smells of old holiday classics fill the air. Most people think of this time of year and are instantly thrown back to childhood memories of parades, waiting to open gifts, big family dinners and traditions that predate you. They break out the recipe cards and address book in anticipation of all that the holidays bring.

This year before the holidays actually start (I’m telling you they should begin the Monday before Thanksgiving not the end of September) take some time to look at how you have celebrated the season in the past. Do you gather with family around a warm table and welcome meal? Get together with friends who are from far and wide to celebrate the connections you’ve built over the past year? Do you lend a hand and volunteer for an organization? Spend every waking moment coming up with just the right gift? Plan the details from décor to the meals to the stamps for your cards? Or maybe your holidays are quiet and calm.

keep-calm-holidays-are-comingYour holiday doesn’t have to look just like mine or like anyone’s for that matter. It doesn’t have to be a Norman Rockwell painting or look like the commercials you see for Pillsbury to be wonderful. There’s no one way to celebrate this time of year. Maybe this year your celebration will be completely different than years past and that’s ok. Take the time before the holidays begin and give yourself permission for this year to be this year. Circumstances may be different and life may not look the same. Take a moment to feel any losses and acknowledge the shift. Take in the changes and celebrate even the smallest of victories and good memories.

As the weather begins to turn cold and the days seem shorter take a moment to think back and find those things you most want to make part of your holidays this year and celebrate them.

Happy New Year… oh wait, we aren’t there yet 😉

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Tips For Managing MS Fatigue

Fatigue is one of the many symptoms of multiple sclerosis. It affects the majority of individuals with an MS diagnosis, and can be challenging to manage. According to Can Do MS, there are many helpful and practical things you can do to help boost your energy and improve your daily activities.

Can Do MS sponsored a webinar in October titled, “Tired of Being Tired? Tips, Tools & Techniques to Keep You Going.” This webinar can be watched on the Archived Webinar section of their website.

To summarize, Can Do MS recommends the “4 P’s” as a potential solution for managing fatigue:

  1. Planning:  Consider using a day planner or phone app to help manage what you may have going on. This could help you track doctors’ appointments, medication regiment, meal planning and shopping trips, and ensure you do not try to do too much on any one specific day.
  2. Prioritizing:  If you are feeling tired on a particular day, decide what is important or must get accomplished and what can be put off for another day. Do those things that need to get done and give yourself permission to push the other tasks off for a day when you have more energy.
  3. Pacing:  This strategy will help prevent you from feeling overwhelmed when at work. If you expect a task to take an hour, don’t pressure yourself to get it done in an hour. Instead, give yourself an hour and a half and take a ten minute break for every 20 minutes of work.
  4. Positioning:  This involves rethinking the location of physical things in your life to make your daily activities simpler and more efficient. One example of this would be placing everyday cooking utensils in a convenient, easy to reach place in the kitchen so you do not have to exert yourself every time you reach for them. Making simple adjustments may help you save some energy for use at other times throughout the day.

In addition to managing your fatigue, it might also be a good idea to track your activity to determine what is causing you the most fatigue. This better understanding of your fatigue could help you modify your activities and help you conserve energy throughout the day. MSAA’s free mobile app – My MS Manager, now has a newly added fatigue scale to help you track and measure your fatigue. The app also allows you to connect to physicians and other members of your care team via the app to securely share your progress and reports. Click here to learn more and download the free app.

By following the “4 P’s” and tracking your fatigue, you will hopefully have a better understanding of what activities affect you the most and an easy tool to you manage your daily fatigue better.

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New Features Available Now on MSAA’s My MS Manager App

My MS Manager appCheck out the updated features on My MS Manager – MSAA’s mobile phone application, provided free of charge to individuals with MS and their care partners to use on your iPhone, iPad, iPod Touch or your Android mobile device.

My MS Manager, the first-of-its kind app created by MSAA to help individuals with multiple sclerosis better manage their disease, now offers new features – including a way to measure changes in fatigue and a way to connect and share information with your physician!

This free tool allows you to input and store important medical information, track symptoms and disease activity, and generate charts and reports across various metrics such as treatments, moods, symptoms, and more.

Other HIPAA-compliant features include:

  • private reminder settings
  • links to MSAA’s educational materials
  • a fatigue scale
  • **EXCLUSIVE to My MS Manager** – the ability to connect to physicians and members of your healthcare team via the app to share your progress and reports securely and as needed.

“In this world that is increasingly powered by all-things-digital, efficiency and clarity are at the top of my list. Having been diagnosed with MS as a 23-year-old, I wanted to do my best to take control of my health. Having a tool to help me do this has been extremely helpful. The Multiple Sclerosis Association of America’s mobile app, My MS Manager, allows me to not only keep track of all of my notes, meds, doctor info, labs, and journals, but also gives me access to local resources, current MS research updates, and so much more. I can now manage my disease with an incredible amount of clarity and efficiency – things I have not had before. A huge thank you to MSAA, for giving me the tools to be in control.” – Anna Webber, My MS Manager App Ambassador

My MS Manager is now available to everyone in the MS community on your Apple or Android mobile devices.

Google Play Store

Apple App Store

If you need assistance with the My MS Manager app, please call (800) 772-8277, ext. 178 or email us at apphelp@mymsaa.org.

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Insurance Open Enrollment Begins!

It’s that time of year again when individuals can enroll in a Marketplace health insurance plan. The open enrollment period to sign up for 2016 health insurance coverage begins November 1, 2015. For those who are uninsured, this marks the time when you can search for insurance plan options and assistance that may be right for you within the Marketplace. You may even qualify for lower costs on insurance premiums depending on your household information. Be sure to review the deadlines to sign up for insurance coverage to ensure that you are covered on a plan beginning January 1, 2016.

According to the U.S. Department of Health and Human Services, the Affordable Care Act is working and continuing to increase access to healthcare. Millions of people were able to obtain healthcare coverage through the Marketplace as of March 2015 and this has decreased the rate of those uninsured. Insurance affordability has increased also, with the eligibility to qualify for lower premium costs, the expansion of Medicaid coverage and additional plan options to choose from being key factors in this act.

While this open enrollment period is a significant time for those uninsured, it marks an equally important time for those who have previously purchased health insurance through the marketplace as well! If you are not satisfied with your current plan purchased for 2015 and would like to make a change, now’s the time to do so! During open enrollment you can review other insurance plans to see if another plan better matches your needs.

For those currently enrolled in marketplace plans, you may receive a letter from your insurance company explaining if the company will either automatically re-enroll you for 2016 coverage, or if you will not be automatically re-enrolled. If your insurance company plans to automatically re-enroll you for coverage but you would like to make a change, it’s important to review other policies during the enrollment period and take action to change it by December 15th to ensure coverage beginning January 1st.

Whether you’re notified that you’ll be re-enrolled in your current plan or not, you do have to update your expected income and household information for the 2016 coverage year. This ensures that your premium tax credits are correct and you will receive the appropriate coverage costs and plan options. A letter from the health insurance marketplace is also sent out to individuals currently enrolled that better explains the actions needed to receive the accurate premium tax credits for 2016.

Besides updating your own income and household information, be sure to take the time to review the different insurance plan policies and prices for the new 2016 coverage year as these do change. MSAA has resources that can help you in the decision making process with the My Health Insurance Guide and The Affordable Care Act and Multiple Sclerosis brochure that provides an overview of the insurance planning process and steps to help you PLAN ahead.

Sources:

https://www.healthcare.gov/lower-costs/

https://www.healthcare.gov/marketplace-deadlines/2016/

http://www.hhs.gov/healthcare/facts-and-features/fact-sheets/aca-is-working/index.html

https://www.healthcare.gov/keep-or-change-plan/

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