Funny, Not Funny

Posted on August 16, 2021 by MSAA

By Lauren Kovacs

OK so there is nothing funny about a chronic illness. Injecting a little bit of humor can go along the way. Don’t force it.

Yeah, the fire breathing dragon on my path to a decent night’s sleep is not funny. His blow torch breath on my arm for hours kinda sucks. But, maybe he can get a part on Game of Thrones instead of being part of my nightly nerve pain.

So my right leg identifies as a tree log. A very heavy log. It is my Barbie Leg. The Floppy Fish Foot is a special added MS gift.

If I can’t manually bend Barbie Leg, Floppy Fish Foot steps up and makes movement extra hard. It gives 110%. It really knows how to increase the difficulty.

I left many things behind when my boys became teens. Not so much in reality. I load my van for a trip with as much stuff as when my boys were little. Only now my bed rail has replaced the pack and play. My wheelchair replaced the stroller and protein powder pushed out the baby food.

Ah, to be young again. Wait… my special fork replaced baby spoons and my water bottle with a straw replaced sippy cups. At least I am accustomed to needing lots of stuff.

Try and find a wee bit of humor in things. Not everything is funny though. I spend many moments in frustration tears. Take something you deal with and turn it around. The back of my thighs are starting to burn a bit. Nothing big or painful yet. Getting ready to turn that around with humor.

Yes, my right leg is spastic, but I turned it into something silly. I can laugh most of the time. Plus I am finding people understand a Barbie leg better then spasticity. Make your descriptions as simple as possible for everyone. Your silly analogies can clarify things for people.

30 Things that Give Me Hope

Posted on January 27, 2021 by MSAA

By Doug Ankerman

Fitting with this month’s theme, here are 30 things that give ME hope…

Falling asleep before the legs begin to dance
Elastic waistbands
Good hair day
Stoplights turning green
Summer shade
Kohl’s Cash
Puppy licks
Slippers on a cold morning

Zippers with large pulls
Curbside pickup
Low threshold doorways
Laxatives
Red sky at night
Slow news day
Finding money in a pocket
Automatic toilet that doesn’t flush five times
Staying awake past 9:00
Open drive-thru lane at the bank

Getting one final squeeze from the tube
Opening chip bag without ripping
Springtime
Coming Attractions
Food I can cut with a fork
“You May Already Be A Winner”
Air conditioning
Inaugurations
Zip closure bags that stay zip closed
A vaccine
Working shake machine at McDonalds

And finally…

Bathroom scale that is “light” (but you don’t know it)

Did I leave something out? Leave a comment by sharing what gives YOU hope.

*Doug is a member of the MS class of 1996. He writes silly stuff about multiple sclerosis and other junk on his humor blog at myoddsock.com.

Holiday Assistance

Posted on November 20, 2019 by Angel Blair

The holidays can be a magical time of year. There’s a different feeling in the air—of wonder and joy, that feels unique compared to any other time of year. Though the season can evoke much happiness and excitement, it may also create stress and challenging expectations for some. Financial stressors and limitations can be especially difficult this time of year.

Holiday celebrations can symbolize something different to each person. Special traditions and pastimes may not center around gifts or feasts. The holidays can be what you make of them. But it’s important to know that for those who may need a little extra help in carrying out their holiday activities, there are resources available to help.

Salvation Army
- Offers seasonal services and holiday assistance programs to help families in need with holiday dinners, toys, and clothing.
The United Way
- Provides information and referrals for holiday assistance programs in the community.
Toys for Tots Program
- Distributes new, unwrapped toys during the holidays to children in need through community outreach and support efforts.
Catholic Charities Services
- This group and other local religious organizations may offer seasonal assistance based on location. Contact groups directly to inquire of services available.
Lions Club organizations may also have holiday assistance programs available in the community.
County department offices of family/social services may have additional holiday assistance and resources.
Local schools in the community may know of holiday assistance programs for families.
Community food banks may also be able to offer holiday assistance programs in the area during the season.

Many community assistance programs have specific application deadlines and requirements in order to receive holiday assistance by a certain time. Be sure to reach out to the resources to see what’s available in your area and how to apply.

My Mother’s Advice on MS Diagnosis… from Heaven

Posted on May 13, 2019 by MSAA

By Alene Brennan

Today marks the third year of my mother’s passing after a 10-year battle with cancer.

Just six weeks after she passed, I was diagnosed with multiple sclerosis.

It was hard enough to grieve the loss of her absence in my daily life. But now having my own diagnosis to process, I needed her more than ever.

I was scared.

I was angry.

I was overwhelmed.

And she was my person.

She always Continue reading →

Intimacy and Family Planning with MS

Posted on February 25, 2019 by MSAA

Couples living with multiple sclerosis (MS) can often experience challenges in their relationships, levels of intimacy and changes in roles and expectations. Join MSAA, as we present a new webinar on relationships and MS:

“Intimacy and Family Planning with MS”
Tuesday, March 5, 2019
8:00 pm (Eastern)

To help strengthen and foster healthy relationships, MSAA invites couples affected by MS to Continue reading →

Anyone else out there…?

Posted on April 6, 2018 by Angel Blair

As we’ve just finished a very active MS Awareness Month here at MSAA we wanted to take some time to talk about support networks and positivity for this month’s blog theme. When dealing with an illness like MS, its helps to create and focus on connections to others within the community, to know that one is not alone in what they’re experiencing. From our Ask Me Anything events in March we saw lots of similarities in what others were asking when it came to their MS symptoms and disease course. On MSAA’s Helpline we often receive calls from clients asking ‘Am I the only one who’s experienced this?’ ‘Is this normal for MS?’ ‘Does anyone else have this issue?’ And we consistently find ourselves validating all of these questions and concerns, because the fact is that individuals are not alone, as there are many others out there wondering the same things.

I think the feeling of knowing you’re not alone in a challenging experience can help to quiet the fears, concerns and anxieties that accompany it. Asking if there’s anyone else out there going through the same thing and learning that there is, can make someone feel more validated and less isolated. This is why having a support network is so vital, and not only to connect with during difficult times but also to share good times with as well. It’s comforting to vent, cry or scream in times of strife and have others listen, but it’s also important to relay positive experiences, humorous moments and celebratory occasions with those in your circle. Life will have its ups and downs as these inevitably come with the ride, so sharing in the ups when they do occur can help combat the downs. If you find yourself feeling alone and asking questions just keep in mind that you’re not, and there are others out there asking too.

Gratitude and Thankfulness

Posted on November 17, 2017 by MSAA

By Susan Russo

The holiday season is once again fast approaching. I honestly feel like I just finished boxing up all my decorations from last year. This is a time when everyone tells us to be thankful and to be grateful. But why are these sentiments so pressured into us at this time of year? Why not all year around? I don’t actually have an answer for you except for what these graces mean to me in my own life and why I choose to celebrate all year long.

I remember when I was diagnosed with multiple sclerosis. Was I grateful and thankful for this disease at the onset? Absolutely not! I was angry and frustrated and in a serious “why me” phase. But, as time seems to heal all wounds, over the following months, my heart softened and I started appreciating MS for what it is; a disease that can crush you or build you up. I chose the latter. MS taught me a strong lesson about gratitude and being thankful, I promise you.

I am a single lady with no man to date as far as the eyes can see. My son is grown and my family lives out of state. So when Thanksgiving arrives, I tend to feel really sad and lonely. It’s a time for families to celebrate. And I’m reminded it’s just me.

I try to chalk it up as just another Thursday in a world of Thursday’s. But the season itself reminds me I am alone. Many people are alone. I get that. I can choose to wallow in self pity or I can choose to see what is all around me.

I have a home which did not flood during Hurricane Harvey. I have people who love me. I have a strong faith in Jesus. My son has grown up into an amazing man. (I raised him by myself; jus’ sayin’). I can still walk and when I can’t, I’ll buy myself a purple scooter. I’ve always wanted one anyway. And purple is my favorite color.

My point is this: being thankful and grateful are a choice. It’s not easy to be appreciative of life when all around us, our world is falling into pieces. But here’s the thing: choose to take a long hard look at all you have in your life. I am certain there is always something to be grateful for. If you feel stuck, begin a life of service to others. I did, and this one choice completely changed me for the better.

About a year ago, I became a member of the Pearland Citizens Police Academy Alumni Association. I volunteer to serve our officers and believe me, if anything will teach you to be thankful, it will be the police officers and their stories of courage and strength against all odds. These men and women leave their homes every day to keep us safe, not ever knowing if they will come home. But they do it anyway. This choice alone has made me eternally grateful for our men and women in blue.

Here’s the thing: becoming a police officer was never a choice for me, but serving them and my community are; MS was not a choice. But becoming healthier in mind and spirit was a decision I happily made. Being alone at the holidays is not my choice. But giving back to others is something I have grown to love. Not having a decent, God-fearing man to share my life with is not my choice. But believing God will one day answer my prayers, well, that truly is my choice.

And baking apple and pecan pie is not my choice either, but eating every single one in sight until I disappear into a sugar coma, well, now that’s a decision I never regret.

Until I stand on the scale…

How Do You Create Space?

Posted on October 18, 2017 by Ro Washington

Though it doesn’t feel like it in most of the country, Fall is officially upon us. There’s the activities and the get togethers. The smells and the lead up to… the holiday season! Arguably fall is my favorite time of year and easily also one of the most stressful. In gearing up for the pending holidays, trying to enjoy outings with loved ones and friends and preparing for the end of the year in terms of work and personal life (I’m someone who likes to file my taxes in January if I can help it to get them out of the way) I inevitably run into a wall of burnout. It’s not permanent and to be honest is totally avoidable if I just created some margin. I know, it’s easier said than done when the kids, the spouse, the job, the (insert religious organization you belong to), the neighborhood watch, the scout troop or sports team, the friends, the family…the lists go on… all need something and they need it soon. If you are anything like me you’re a doer. But doers…they need margin most of all. We have to build in safe guards and set boundaries to make sure that while we’re caring for and participating with others, we’re also monitoring and taking care of ourselves. That we don’t run into the situation that we run totally out of steam, burning the candle at all ends and find ourselves in the dark.

Like I said, it’s easier said than done but just think how much better you’d be if you weren’t laying under the desk completely done at the end of the week. So, what have I done to help create space and boundaries for myself? I have people in my life who understand my doer mentality and essentially pull the plug from time to time. They’re there and not only listen to the litany of items on my ever growing To-Do list but also challenge me and say ‘Can someone else pick up the donations from the restaurant’ ‘Who can you call to finish making the activities for the carnival’ ‘Do you need to volunteer to run another event’ and most importantly, ‘What have you done this week that’s just for you’. They ask not because they are nosy or because they are looking to judge or condemn me. No, they ask because I’ve let them in and given them permission to tap me on the shoulder when it looks like I’m headed for the red zone. And vice versa, I’m part of their team. Their team that pulls them from the edge when they’re baking for the 5^th bake sale this month or about to volunteer to run the fundraiser that drove them insane last year. You should surround yourself with people who you trust to step into your life and help you keep up with the boundaries you need…not the Jones’ down the block. So how do you do it? How do you build in the buffer? Because creating space and implementing margins in our time and energy may not feel natural at first if you are a doer, but it’ll help keep you from smacking into the wall of exhaustion…and who doesn’t want that?!

MSAA Closed – Friday 4/14

Posted on April 14, 2017 by MSAA

Please note that MSAA will be closed on Friday, April 14, 2017.

We will be back in the office on Monday, April 17, 2017 at 8:30 am.

Enjoy the spring weather!

Recovering from ‘Overdoing It’

Posted on March 31, 2017 by MultipleSclerosis.net

Recently, one of our community experts wrote an article detailing how she recovers after a day of “overdoing it.” Whether overdoing it means doing too much physical activity, traveling, or just pushing yourself past your limits to take a shower, so many of our community members could relate to this feeling. Whether this occurs frequently or only occasionally, you are not alone! So many people responded with what overdoing it means to them, how it frustrates them, and they you recover. We received so many wonderful comments, we wanted to feature several to share with everyone!

The Overall Frustration of Overdoing It

“For me, overdoing it brings foot drop, a very bad mood, balance issues and trouble getting things into words. Oddly enough, reading books gets hard too……my mind just can’t seem to concentrate”

Overdoing it is rough and what might get you one day, might not be as bad on another day. You never really know until you’ve done it. And dealing with those who have no idea what it’s all about only adds to the problem”

“It stinks when ‘overdoing it’ consists of walking my child to the bus stop so she can get to school, coming home to make myself a bowl of cereal, and going all-out and brushing my teeth immediately after eating!”

Overdoing it can take on many forms and can be caused by completely varying triggers, causing much frustration and agony.

Attempting to Avoid Overdoing It

“I try to pace myself and not schedule too much for one day, but I also want to live as much as I can while I still can.”

“It is important to pace yourself which is why it’s important to put some breaks in between long days. But even doing that I’m still exhausted”

“I’m trying to make sure I eat healthy and pace myself, but it’s really difficult once I try. I’m still looking for a balance between work, classes and personal life”

Even the best laid plans and precautions can still lead to exhaustion later. If this sounds like you, you are certainly not alone!

What to Do Once Exhaustion Sets In

“For me, the fatigue is the hardest hurdle because you can’t navigate around it. It must be recognized, respected, and my body rested. Always when it’s the last thing I WANT to do. Surrender. But meditation and focusing on releasing that anxiety from being forced to stop is an ongoing practice”

“I’ve been getting OT/PT and they made me keep a log of activity. I can do 1 to 2 activities a day. We practice taking breaks. Breathing between steps. Sitting before it’s too far. Laughing more”

“Try everything you can imagine to pull yourself through this maze. Exercise at home if you can’t get out. Don’t feel bad if you can’t accomplish tasks as you once did”

“Today I went in my room and took a nap. I explained that I had to. When I got up I apologized and told them I really had to take that nap”

“Sleep, shower, sleep, sleep, and sleep!”

Everyone handles their exhaustion after overdoing it differently. Whether it’s distracting yourself with a good book or movie, getting some exercise, shifting your mindset, or just getting some good, old-fashioned rest, you know best what your body needs!

Let us know how you overcome the exhaustion after overdoing it. Your advice may help someone else in the community who finds themselves struggling with this experience!

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