By: Gina Ross Murdoch, MSAA President & CEO
Welcome to MS Awareness Month. Each year, MSAA dedicates the month of March to focusing on topics important to the MS community. This month, we will be exploring Life with MS: Different Stages of the Journey. Over the next few weeks, we will explore topics critical to living with MS at varying ages.
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By: Diana Cruz
Motivation is a gift that many people overlook. When motivation is lost, the momentum once encompassed to achieve your goals and accomplishments typically decreases. Loss of motivation and momentum can easily be viewed as laziness or lack of desire to truly go after what you want; however, it is much easier to judge from the outside looking in.
Remaining motivated to complete the goals you have set for yourself, even daily tasks, can be daunting when factors out of your control come into play. Having an impairment or sickness can take a toll like no other – one that can make you feel scared, unmotivated, and alone. It can feel like the universe is out to get you. As someone with an autoimmune disorder, experiencing flare-ups with my health can affect every aspect of my life. It becomes an impairment physically, mentally, and emotionally – making completing tasks and remaining motivated nearly impossible some days.
When my disorder gets the best of me, I tend to remind myself of three things:
Rather than judging the positions of others, praise those who are consistently putting in effort despite their circumstances. Be kind – you do not know everyone’s story. And lastly, please remember to eat, drink water, take care of yourself, and do your best – whatever that may look like today. Keep your support system close and remember that asking for help does not make you weak, it makes you resourceful.
Art is an excellent way to improve your well-being, regardless of your artistic experience. It promotes self-expression, mindfulness, and the reduction of stress. Although all forms of art can be beneficial and promote peace and relaxation, it is important to find an activity that brings you joy and accommodates your lifestyle. Here are some examples of therapeutic art activities that you might like:
Continue readingIn the spirit of spring cleaning, when is the last time you decluttered your emotional life? Spring cleaning isn’t just for the home. Did you know feelings and thoughts have a way of piling up and need decluttering too? Acknowledging our emotions can be the beginning to setting them free and releasing emotional baggage.
Think of those unhelpful thoughts that have been in the back of your mind lately. Am I holding on to anger, guilt, sadness, or resentment? Those thoughts generate feelings that impact the way we see ourselves and everything around us. Make a list or say them out loud and take some time to really acknowledge those feelings. Now ask yourself this question – are these feelings helping me with my wellbeing and goals? If the answer is no, it is time to tidy up!
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MSAA is excited to announce that, in partnership with HealthUnlocked, we have launched a new peer-to-peer online community called My MSAA Community! This free online forum is a safe place for anyone who has been affected by MS, whether they have been diagnosed or are a care partner, to share their stories and find information and support.
Sometimes when you are going through something personal and you try to share your feelings or your experience with someone who hasn’t been through the same thing, you can find yourself hitting an emotional wall. The person you share your feelings with may be able to empathize and understand what you are sharing to a certain extent, but they may not fully appreciate what you are going through, since they haven’t experienced it themselves. In these situations you can feel like you need to talk to someone who “gets it” and has been through what you are going through.
My MSAA Community is designed as an online community and forum for people whose lives have been affected by multiple sclerosis to find each other and share their experiences as a way of providing support and information. This community allows members to post questions and get answers from others on the forum and contribute to other ongoing conversations.
Follow or join the community at: https://healthunlocked.com/mymsaa
Not long ago, patients expected their doctor to tell them what to do about their health and doctors expected patients to follow orders. With the growth and expansion of technology, individuals are given an opportunity to read medical journals, watch health-related television, and visit information sites regarding their specific condition.
With the expansion of medical knowledge, there has been a shift in the doctor-patient relationship. Patients are now expected and encouraged to ask questions and have medical discussions about their care. Some doctors are more open to this relationship than others, so how do you build a relationship with a doctor who may not be as open to this type of relationship?
Communication in any relationship is a key factor; having a discussion with your doctor about what you are and are not comfortable with is very important. By having this conversation, assumptions about what you may or may not know about your disease, or the treatment options is avoided. You have a right as a patient to receive appropriate medical care and the right to have your voice heard.
Just like any relationship, if you do not feel comfortable or feel as though your voice is not being heard you have two choices, leave the relationship or work to change it. Have you had to have a conversation with your doctor about your relationship? What was that like for you? Do you have any advice for others?
Sometimes you may feel like you are talking at someone. As if the things you are saying hit an invisible force field and bounce back toward you with no impact on the person you are speaking to. When this happens it can cause feelings of frustration.
You may think: Are they even listening? Do they care? How do I make them hear what I am really saying (and not just what they want to hear)?
Communication can be difficult when the person you need support from is on a different page. You may feel they are unresponsive, unrealistic, or uncaring. The other person may be thinking about something totally different, they may be unmoved by your appeals, think you are incorrect in your logic, or something else entirely.
You can only do your best to communicate your needs and sometimes you may not get those needs met. Why, because communication is a two-way street. Talking at someone rarely effects change. To make a difference it often requires both sides to give a little and meet somewhere in the middle or for one person to make concessions to another.
When no one gives a little, situations can explode. For example: “I need help with the laundry, it’s getting too difficult to carry it up and down the stairs” over time can turn into “You didn’t change the laundry again. Do you even care about my fatigue and how that makes me feel?”
Or “Doctor xyz about that medicine makes me really uncomfortable.” Response: “You will take the medication prescribed, I’m the expert here.”
If both sides can collaborate and agree to a plan of action it may result in a better outcome. “Let’s make a plan for you to help me with the laundry every Monday so we can all have clean clothes for the week.” “Okay, but if I forget please just remind me when you want it done before getting upset.”
Or “If that doesn’t work then let’s talk about what other options for treatment we have available and try to select something we can both agree on.” Creating a clear plan of action can remove frustration and set realistic expectations for each party.
If ultimately, the other person refuses to listen or budge on an issue you may have to try and get your needs met in other ways. “My mom agreed to come over to help wash the clothes” or “I’m finding a new doctor.” As you can see in some circumstances seeking other support can help to resolve the issue but sometimes at a steep cost.
If you run into a situation where someone will not meet you in the middle you will need to review the pros and cons of your alternative options and remember that communication is a two-way street.
The relationships that we hold with family members are some of the most significant and influential ties that we will carry throughout our lifetime. These bonds, whether good or a little rocky at times, help to build the foundation of our relations with other people. Because these relationships hold so much meaning and importance, individuals put forth much effort into maintaining them to ensure they remain intact. What helps to make this possible?
A key element in all types of relationships is communication. Being able to disclose feelings, concerns, and needs to others is important and can build strong ties in the connections. Reading other people’s minds can be a challenge, so talking openly about things is a good step to knowing what the other person is feeling. This isn’t easy for everyone; it can be difficult to bring matters to other people’s attention and talk about different issues, especially if they are personal or sensitive in nature. Because of this it’s important to think about whom you feel comfortable disclosing things to if challenges arise.
Having that go-to person/support in place is essential to communicating effectively and being able to share your personal experiences. Sometimes you may seek this type of support outside of your family structure which may inadvertently upset family members. So then with family, you may need to have a discussion about communications barriers or discomforts to be able to disclose why communication is difficult. This can help to reduce confusion and misconceptions in these relationships, and still leave the communication lines open. As family remains one of the strongest ties in connecting to others, communication will remain an integral part of this system.
We all trust and hope that medical providers keep accurate records and maintain documentation in an orderly fashion. But things happen – papers get misplaced, lost, or destroyed and when this happens, the patient suffers.
So what can be done in advance to reduce the chances of this negative effect?
Keeping track of your medical records is the best way to assure that the information about your MS treatment stays organized. However, this can mean different things to different people. Finding a way to organize and keep your medical records in a way that makes sense to you is important.
Some individuals may find sorting records by year helps to track progression or change over time. While others prefer to sort based on testing or specialty, tracking things such as MRI results, bloodwork, or therapy. No one way is better than another. It is about finding a way that makes sense to you and one that will help you along the way.
Take into account the type of materials needed to organize your medical records. Three-ring binders are helpful in securing documents, making sure they stay in place and are not easily lost. Dividers and tabs can be used to distinguish a change in the record, whether it’s a year, type of test, or doctor. Labels written on with dark marker can be placed on the outside of a binder to help identify what is inside.
Depending on the size of your medical record, bring the record with you to an appointment. It can be used as a reference with the doctor, or can be a place to take notes during a visit. After the appointment, ask the office staff to make a copy of any records discussed at the time of the appointment and place them into the organized medical record.
By keeping track of your medical records, you are taking an active role in your health care. In which way do you keep track of your MS? Which system works best for you?
By: Jeri Burtchell
Happy New Year! I don’t know about you, but I’m starting fresh, determined to make this year better than the one before.
I try not to make unrealistic promises to myself in January since I’m not so “resolute” when it comes to my resolutions. Instead, I set the bar low so I can cross it–even if I have to trip and fall to make it over.
This year I chose only one goal: to eat better. I figured if I can do that, maybe there will be side benefits like losing weight or feeling better.
I confess I’ve been a junk foodie in the past. I use air quotes when I say the word “food” as some people would beg to differ. Yes, I’ve eaten leftover french fries from the bottom of a McDonalds bag a day later. Am I ashamed of that? You bet.
It’s hard to be a freelance writer covering MS and ignore my own bad habits. The latest news regarding the gut microbiome and how it can influence a whole host of diseases has been in the news and on the internet so much I can’t help but feel guilty hoisting a Coke to my lips as I look on and take it all in. Maybe there’s no definitive proof that diet influences MS, but if I can control what goes in my mouth on the off chance I might feel better, don’t I have an obligation to do that?
So enough was enough. I slurped up the rest of my Wendys frosty and pledged to tighten up my definition of food. I mentally stationed a miniature bouncer at the corner of my mouth who only lets the good foods pass.
I wish this bouncer had a wallet full of cash, though. My first stop after I (loosely) defined my resolution was the grocery store. Who knew eating only organic whole foods and raw honey or cold-pressed virgin coconut oil was only a pastime the rich and famous could afford?
The upside to taking out another mortgage in order to eat right is that you are hyper-aware of expiration dates and the gradual decomposition of your quality fruits and veggies. If I wanted everything to turn to compost in the vegetable drawer I would have cut out the middleman and simply buried my hard earned dollars in the back yard.
Not everyone in the house is on this health food bandwagon, however.
My teenager hates vegetables and my 91 year old mother is set in her routine, and she’s in great shape. “She’s earned the right to eat what she likes,” said her doctor, and I swear I saw Mom stick her tongue out at me.
Even though this is my resolution, I’ve found myself asking “every day??” when I think about how often a person is supposed to eat like this. For a terrible cook (another confession), eating things that aren’t ready to “microwave and enjoy” has been a huge challenge.
So I started out with something easy. We all like shakes, and smoothies are like shakes, right?
I got out the old Hamilton-Beach blender and blew the dust off. I looked at all the fancy stuff I’d bought at the grocery store and began flinging in a handful of this, a spoonful of that. I topped it all off with a generous heap of kale (because you can’t toss an Oreo cookie without hitting a story about how good kale is for you), and I set the blender spinning.
It looked…disgusting! The green of the kale, combined with the red of the strawberries gave the concoction an overall brown color. Even though it looked kind of like a chocolate shake, my teenager wrinkled his nose, well aware there had been no chocolate involved in the making of his mom’s new drink.
Ignoring my own urge to pinch my nose closed before gulping it down, I sipped mine and smiled, nodding to him to give his a try.
It turns out we both loved it so much it has become our daily ritual–and the uglier the better. We throw every healthy thing we can find in there.
Besides the smoothies, I cut out processed foods, refined sugar, and carbs. I have no clue how–or if–it affects my MS, but I can tell you this: in the 22 days since I began, I’ve lost 5 lbs., I don’t need afternoon naps, and my brain fog seems to be lifting.
I can’t wait to see how I feel a month from now. Unlike past resolutions, I think I just might be able to keep this one!
*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.