March is almost over…But before we go

This month we’ve been highlighting MS Awareness as we present different topics important to and associated with MS as well as ways in which we can educate ourselves and those around us. In addition to MS Awareness, March is also Social Work Month. Social workers play a vital role in overall health and wellness, mental health, as well as in areas far outside of the health sciences.

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Social workers have been around since before the 1800’s working diligently on issues of injustice, inequality and to help empower individuals and communities to use their collective strength to make a difference. Some of our most noted alums here in the United States started institutions such as the Hull House in Chicago in 1889, which was established to help the surrounding low-income neighborhoods have access to education programs, health care services and recreational opportunities. In addition to reaching out to low-income communities, social workers throughout history have partnered with the Red Cross to treat soldiers returning from war, been civil rights activists, served on presidential cabinets and worked in legislative arenas as catalysts for change. Social workers are often thought of as the caseworkers in hospitals or with children and family services. While those are two of the important roles that social workers take on, social workers also work with the military or international businesses as well as be political campaign workers, community organizers, run nonprofit organizations and are behavior and mental health professionals. Our first lady Michelle Obama has an MSW (Master of Social Work) on her team to initiate new programs and services across the country.

Social work as a profession has evolved from those early years but some things still remain. The individuals who enter into social work are dedicated, compassionate, innovative, inclusive and hard working professionals who cover a bevy of occupations and can be found in almost every avenue. We meet people on some of their worst days and walk with them through circumstances and over obstacles while assisting them to build on their own strengths to come out the other side better equipped to tackle some of life’s uncertainty. It takes a special person to be a social worker and partner with others to be the difference someone may need.

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Thank any social workers you know for all their hard work not just in the month of March but whenever you get the chance.

 

 

 

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MSAA and MultipleSclerosis.net Partner for a Live AMA

MSAA recently partnered with MultipleSclerosis.net to co-host a live Facebook “Ask Me Anything”. For one fast-paced hour on March 22nd, everyone from the multiple sclerosis community was invited to ask questions about living with MS and have their questions answered by MSAA Client Services Specialists and MultipleSclerosis.net staff and patient advocates.

Read more about this AMA and find out what topics were discussed at MultipleSclerosis.net.

AMA March 22 2016

A special thanks to our friends at MultipleSclerosis.net for allowing MSAA to be a part of this special MS Awareness Month event and for helping improve lives today for the entire MS community!

 

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MS and Making Plans: Community Thoughts

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There is a lot about MS that is difficult for “healthy” people to understand, and one of the most frustrating things is that it can be really difficult to make plans in advance. You just never know how you are going to feel the following day, or even the following hour. One of the amazing contributors at MultipleSclerosis.net, Matt Allen G, wrote a wonderful article about his frustrations with being unable to make plans with friends in advance, and then some people not understanding why those plans may have to change at the last minute. Matt’s words really resonated with our community, and so many other people shared their thoughts and experiences with us. Here’s what our community had to say:

It’s emotionally draining

  • My head tells me I can do it but my body won’t let me. For me this is the worst. I look around during my house and there is such that needs done but I just can’t. Depressing.
  • I get so sad and discouraged when I see people posting pictures of everywhere they go and the fun they have…and I do well to get to the store once in a while.
  • This is one of the hardest parts of staying in the family dynamic.

MS Doesn’t Care

  • MS doesn’t care if your children need you to drive them here, there, and everywhere. MS doesn’t care if you got all dressed up and now you need a nap. I have gotten all dressed for church and then as my husband is backing up the van I ask him to stop as I need to go back in the house. Then I take a nap, fully dressed, too tired to undress.
  • I have an international trip coming up, and the anxiety alone is killing me, but I figure you only live once. If I let this disease deter me from making plans and living my life as best I can while I still can I’ll always regret it. Tomorrow is not promised to anyone. You never know when there’ll be a “next time”.
  • I never know when I am going to feel better; 10 minutes good, then it’s downhill.

Tips

  • I always get trip insurance and have used it. It takes the pressure off. Make sure it covers pre- existing conditions as most don’t. I think it is Travel Guard. You have to purchase it within 2 weeks of booking a flight or trip. Really truly despise this part of living with the monster.
  • My experience has been to make plans with the people who understand that I will do what I can. I go, do what I can and find happiness that I did what I could and had an experience that I will remember.
  • I stopped making plans because I never know how I’ll feel. One day at a time.
  • Fatigue and meltdowns make it so difficult to do things around the house. I’ve learned to do things as I can because pushing to finish anything isn’t possible for me.

No one understands

  • This sums up my life perfectly. I HATE the unpredictability of this disease. Especially when “I look so good!” but my body’s numb. Or I can’t lift my leg. People just don’t understand what its like. No matter how much they try to empathize they’ll NEVER understand it. Like the phrase goes, “no one Gets MS Until they GET it”.
  • This is something I wish all my family and friends understood.
  • No one understands what MS is doing to you… You have to listen to your body. You will lose people because they just don’t understand… Keep positive and Never ever give up!!
  • I wish my grown children would understand this.

I won’t let MS run my life

  • It never stops me. I’m going to Thailand, jumped out of a plane, to work I drive a modified car, and I play wheelchair basketball for my local team.
  • One day at a time is all you can do.
  • It’s not about having a good day. It’s about having a good minute!

What about you? Do you struggle with planning? Do you find that friends and family don’t understand?

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Relapses: Not Always Easy to Define or Diagnose

With a majority of MS patients diagnosed with relapsing-remitting MS, the idea of defining and recognizing the signs of relapse becomes very important. This topic can cause both MS patients and neurologists to debate the issue, and some of the lines can be blurry, to say the least. The official definition of a relapse is as follows:

“During a relapse, inflammation is occurring along the nerves and the myelin, causing patients to have a temporary worsening or recurrence of existing symptoms and/or the appearance of new symptoms. This can range from a few days in duration to a few months, followed by a complete or partial recovery (remission). Acute physical symptoms and neurological signs must be present for at least 24 to 48 hours, without any signs of infection or fever, before the treating physician may consider this type of flare-up to be a true relapse.” (MSAA, 2016.)

The new physical signs and symptoms must be separated from a previous relapse by at least one month. As you can see, this definition leaves a great deal of room for interpretation, and every neurologist responds to relapses in very different ways.

Some neurologists treat each relapse with steroids, and do not perform MRIs each time. Steroids are anti-inflammatory medications, almost like “Mega Ibuprofen.” Steroids are very effective at calming the inflammation that causes MS symptoms, but they come with a load of side effects that always need to be considered and weighed. Treatment can be done with IV steroids (Solu-Medrol,) or with oral steroids such as Prednisone. Other neurologists insist on performing MRIs before ordering steroids. Some neurologists prefer to save steroids for only the most severe relapses such as weakness and vision loss, and do not use them for sensory symptoms such as numbness and tingling. It is very much a matter of opinion, and there truly is no “right or wrong” answer in this area.

My own neurologist does not perform MRIs for my relapses, because he does not believe that there is a clinical correlation between the MRI and clinical symptoms. A clean MRI does not necessarily indicate that we are not experiencing relapse, and vice versa. It is also possible that we may be experiencing a pseudoexacerbation. Pseudoexacerbations are temporary increases in symptoms caused by external factors such as heat, which go away after a short period of cooling off. These can also be the result of infections and fever.

I have had RRMS for almost 7 years, and in that time I have experienced very active disease. On a daily basis, I experience new and varying symptoms, ranging from buzzing/tingling/numbness, to burning/pain/spasm, to weakness/vision loss/bladder issues/cognitive issues. These symptoms come and go very unpredictably, and it is truly maddening. The one thing I have learned is that I can’t allow myself to panic if I experience something new, because most often these symptoms with leave as quickly as they appear, within a few hours. However, if they do persist beyond 24-48 hours, make sure you contact your neurologist and get advice, because if there is something you can do, you should! I am always grateful to get my neurologist’s advice in these situations, because it can be very difficult to assess our own symptoms in an unbiased way. Don’t ever hesitate to ask for advice in this area, because it can be very confusing for even the most experienced MS patient!

*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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MS Relapse and Symptom Management Resources

During this final week of MS Awareness Month, MSAA has been focusing on the often overlooked issue of relapse management. MS relapses (or exacerbations) are initially experienced by most people diagnosed with multiple sclerosis. During a relapse, individuals have a temporary worsening or recurrence of existing symptoms or the appearance of new symptoms ranging from a few days in duration to a few months

MSAA’s MS Relapse Resource Center was developed to help you learn, engage, and gain a better understanding of MS relapses. Visit the MS Relapse Resource Center to learn more about relapses, watch a video or webinar, download our relapse brochure, and browse all of the tools available on this comprehensive section of our website. You can also take the new MS Relapse Awareness quiz to test your knowledge!

And if you’re looking for more tools to help better manage your MS and symptoms, check out the features of the My MS Manager app in the video below. To learn more about the app and to download it for free to your mobile phone or tablet, visit mymsaa.org/mobile.

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Monitoring MS Symptoms and Trying To Avoid Relapses

By: Stacie Prada

Most of my energy is focused on managing my health with the goal of avoiding relapses and disease progression. Since fatigue tends to be my earliest symptom when I’m headed for a relapse, I monitor my fatigue level and adapt my activities and schedule to treat fatigue seriously.

By the time I was diagnosed with MS, fatigue had become a constant presence in my health. I felt I had no choice but to push through it and only stop when I physically could no longer do any more. Just because I could push through it at times, it came at the price of relapses. In the span of a little more than a year after learning I had MS, I had three exacerbations.

Fortunately my MS is relapse remitting, and my body has responded well to disease modifying medication and lifestyle changes. It’s now been four years since I’ve felt like I had an exacerbation, and my MRI scans support the conclusion that I haven’t had a relapse in that time. Please know that I know I’m lucky this is working for me, and someone else may do everything they can and still have relapses. What I’m doing now may not work forever, but I’ll keep doing it as long as it works for me.

Specifically I listen to my body and take it seriously when my energy level dips. I track my fatigue level and adapt my activities based on that level. When fatigue overwhelms me or I’m having an exacerbation, I prioritize self care above all else. The hard part about self care is that what I think I may need in the moment might not be helpful for me in the long run. A good example is sleeping during the day. Sleeping more than an hour or so during the day usually upsets my sleep hygiene and keeps me up during the night. Once that starts, it can take a week or so to get back on track and sleeping through the night again.

If I’ve hit the point where I realize I need to stay home from work or other activities, I’ll clear my calendar. I’ll prioritize obligations and only do the top of the list based on mandatory items and those that will support me the most. The threshold for a mandatory item is really high at this point, and they’re things that absolutely can’t wait to be done differently.

Following these guidelines helps me make good use of my time for physical health recovery and mental health maintenance:

1. Look into yourself. What do you need most right now? The answer will be different from moment to moment. Check in frequently.
2. Rally the troops on standby. Let people know who care that you’re managing your health and this is a normal part of your life. Promise to let them know if there becomes cause for worry or a need for assistance.
3. Reduce input. Focus on one thing at a time. Limit technology as it can make your eyes tired and tax your brain.
4. Wear comfortable clothes, but still get dressed and groomed if possible. You’re not sick; you’re maintaining your health!
5. Move your body. Stretch, move each part of your body if possible. A slow yoga sun salutation can stretch most muscles in the body, raise your heart rate and lift your spirit. It takes energy, but the physical and emotional reward is tremendous. If you don’t feel up to much movement, just move from the bed to the sofa or a chair. Any movement helps!
6. Don’t move your body. Lay down. Close your eyes. Meditate. Make yourself so comfortable that there is nothing else you’d rather be doing in this moment.
7. Nap only if necessary. Maintaining a regular sleep cycle is important, and napping can disrupt nighttime sleep for days to come.
8. Open the drapes or blinds. Let in the daylight. Rest somewhere other than bed if possible.
9. Stick to regular routines for meals and snacking if possible.
10. Do something productive. Journal, learn something new, research a topic, declutter, organize, write a thank you note, or make a healthy dish. Limit it to the level of your energy, and don’t push too hard. Intersperse these activities with doing absolutely nothing.
11. Be responsible and responsive. Know your work and social commitments so you may cancel or postpone them proactively. Or go in to work for an hour or so and do the absolute minimum that can’t be postponed or canceled. Leaving colleagues and friends scrambling to cover for your commitments will understandably cause frustration and resentment on their part, guilt on yours, and more tension in your life.
12. Seize opportunities to pause. An unscheduled hour or two during your work day may be ideal for taking some personal time off from work. This may help reduce the instances of needing to take a full day off from work and the impact to your colleagues.
13. Congratulate yourself for having the strength and good sense to listen to your body’s signals and adapt your schedule to accommodate them!

I wrote about my Pause Approach during a particularly difficult week years ago, and I still refer to the guidelines I created for myself when I’m feeling vulnerable to an MS relapse. It reduces time and energy spent trying to decide what I should do, and it helps me give myself permission to take care of myself. That’s the best I can do for myself as a person living with MS.

*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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The Unspoken Symptoms

As we discuss various MS symptom challenges during this month’s MS Conversations blog, we wanted to talk about some symptoms that may be more challenging to disclose or discuss with others at times. This week we touched on the condition of PBA and its difficulties, but there are also issues with bladder, bowels, and sexual function that are some of the other more private, less disclosed symptoms experienced by those with MS. These symptoms can feel a bit embarrassing to talk about or discuss with others at times, and for this reason are sometimes the ‘silent’ symptoms one shies away from even discussing with his/her doctor. Even though silent, these symptom challenges can be loud in their presence for individuals.

Symptom issues with bladder can vary in MS. Because MS affects the nerve responses sent to the bladder that control sensations and contractions, symptom issues can include difficulties with emptying and storing, or both. There are several different medication treatments along with diet and fluid management planning that can assist with these symptoms. If you experience these issues, talking to your doctor about your symptoms can help to initiate some type of treatment plan to address these issues and help manage them. If your family and friends are not aware of this symptom and its relation to MS, this can possibly be an opportunity for them to learn more about the disease and its symptoms so they have a better understanding of what you’re experiencing. But remember, it is your body and the information you wish to disclose or not is your decision. However, when others are more educated and aware it helps to keep lines of communication open so that if needed, it may be easier to discuss the issues you’re facing with additional support.

Issues with bowel function in MS can be due to various causes as well, including lesion effects in the nervous system and medication side effects. Constipation and diarrhea are symptoms that can occur and be influenced by diet and medication practices. Discussing these symptoms with your doctor can help to form a plan of action to manage the challenges and decrease their effects. And again, while including those around you in your experiences can be difficult at times, it may increase understanding and communication when you want to reach out to talk about some of these more challenging symptoms.

Being a private and personal matter, sexual dysfunction symptoms in MS may not always be disclosed and talked about, even with one’s healthcare team. It can feel awkward at times to discuss such personal issues and the difficulties you may be having. Both men and women can experience these symptoms which can present in different ways; loss of libido, sensation and arousal changes, or even pain during intercourse can occur. Along with medication management for these symptom challenges, counseling can be another strategy used to discuss sexual issues being experienced. Communicating openly about the problems can increase cohesiveness and support amongst partners and allow for discussion of alternative sexual satisfaction practices. Education around the ways in which MS can affect sexual function and intimacy is an important piece and allows your partner to understand what you’re going through and how you can work together to manage it. That is why it’s important to try and include your healthcare team as well, to recognize and talk about the issues in order to find ways to manage the symptoms.

The symptoms that can occur with MS all have varying degrees of difficulty and challenge they bring to those affected. But it’s important to know that you are not alone in your experiences—others have faced similar obstacles and have also been reluctant at times to discuss symptoms. This is another element that MS unfortunately tries to impose on those affected—to intimidate or shame because of certain symptoms. But this elicits the moment and opportunity where individuals with MS can recognize their symptoms and discuss or disclose them as they wish—to educate others and increase awareness to bring MS out of the shadows and darkness and into the light.

What are some ways in which you’ve managed these unspoken symptoms of MS?

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Managing the Emotional Impacts of Challenging Symptoms

The first few years living with a diagnosis of multiple sclerosis (MS) are often described as a whirlwind. No one prepares for a chronic illness, especially one as unpredictable as MS. While you work closely with your neurologist and other specialty care physicians to manage the physical symptoms that may present, how do you manage the emotional impact that a chronic illness may put forward.

Symptoms such as Pseudobulbar Affect that are characterized by sudden, uncontrollable expressions of laughter or crying without an apparent trigger can be challenging to emotionally manage. These episodes often occur in public settings and can draw unwanted attention. It is important to remember that Pseudobulbar Affect is a symptom that is a direct result of a neurologic condition; it is not an indicator of a hidden or suppressed feeling. For some who experience this symptom, they question whether or not the inappropriate laughter or crying is an actual feeling that perhaps they were not aware of; this is not the case.

Embarrassing or troubling symptoms call in to question self-worth and can directly impact the way you feel about your MS. These feelings are normal and come along with the grieving process that is associated with chronic illness. Finding support through a friend or family member or even seeking the support of a mental health counselor can be beneficial. The following tips can also be of support during these emotional times:

  • Remain present: Harboring too much thought and attention to things in your past or in the future can cause unwanted stress and anxiety.
  • Value yourself based on your present abilities. Remain positive about what you can do now, versus what you could do before.
  • Put yourself first! Understand your needs and identify ways to meet those needs.

The MS Conversations blog is a support to the entire MS Community. Please use the comment section below to share your story, or to support to another individual with MS.

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Why Do I Cry or Laugh Inappropriately?

As MSAA continues to highlight important MS symptoms during MS Awareness month, this week, Pseudobulbar Affect Awareness Week (week of March 14, 2016), MSAA invites clients to learn about this lesser-known but very impactful symptom by watching a recently produced video featuring Daniel Kantor, MD.

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In this one-on-one interview, MS expert Dr. Daniel Kantor provides valuable insights into understanding PBA and its cause, the differences between PBA and depression and other mood disorders, guidance on discussing PBA with your doctor, and ways to evaluate and treat the condition.

More information, including a survey on PBA can be found at mymsaa.org/pba.

Share your symptom story in the comments below. How has PBA affected your life?

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Living With MS: One (Careful) Step at a Time

By: Jeri Burtchell

I remember my first relapse. Early in 1999 my legs had gradually gone numb from the bottoms of my feet up to my waist over a period of two weeks. By the time I decided it wasn’t just a pinched nerve or something else that would go away on its own, I could barely walk. Every step felt like I was waist-deep in quicksand trying to push my way forward and sinking fast.

That was 17 years ago, and all but a few of my subsequent relapses have also affected my legs. Before I began my current MS therapy in 2007, I would often spend some of my time in a wheelchair during the recovery phase of the more intense relapses.

Although I have only had two mild relapses in the past eight years, it doesn’t mean I am living symptom-free. My legs have betrayed me many times over the course of the years, and my face has become intimately familiar with all sorts of things one’s face shouldn’t see up close — asphalt, dirt, and even kitty litter on one occasion when I tripped and did a faceplant right in the cat box.

So when writing on the perils of walking, I draw from firsthand experience (much to my chagrin).

Besides legs that tire easily, I’ve also developed drop foot. Drop foot is like having your kickstand come down on your bike unexpectedly. You’re tooling along fine when your foot drops mid-stride and causes you to trip over your own two feet, like flying over your handlebars.

So I’m terrified of walking without holding someone’s arm or using a cane, rollator, grocery cart or assistive device — especially when I’m traveling. In my mind my wheels are constantly turning, assessing the terrain, the angle of incline. Judging the surface for the traction I’ll get in the type of shoes I’m wearing. It’s mentally exhausting. I literally cannot walk and chew gum if I want to be competent at either task.

The Doozie of All Faceplants

It was 2010 and my best friend Karen and I decided to take the kids to the county fair. She had her niece and nephew, and I had my youngest boy, Alix, with me. I was wearing sensible walking shoes and told all the kids I’d just watch them ride the rides so I wouldn’t get dizzy and fall. I thought I had covered all my MS safety angles.

It was the perfect day. Laughter and screams of delight filled the blue skies. We ate popcorn and cotton candy, and strolled around until the sun began to set. By that time the kids had ridden every ride except for the Zipper.

The Zipper was halfway across the fairgrounds and as we headed over there for the final ride of the day, I began digging in my purse for the rest of the tickets. With both hands occupied, my feet decided they’d had enough. My left foot dropped, scraping the asphalt pathway we were walking on and I was catapulted into the air.

I landed Tim Tebow style, on one knee for a brief second before launching face first into the pavement. I heard my sunglasses scrape the ground before flying off and skittering away. My initial reaction was “Crap! Those glasses were prescription!”, but I calmed when I remember they were just $5 drug store sunglasses. Then I could focus on what really mattered — the bloody egg-sized bump growing over my left eyebrow.

Alix and Karen came rushing to my side and helped me to a nearby bench, then ran to get some ice. I just kept asking for someone to call an ambulance. With the ice bag pressed firmly to my head, I leaned over my knees trying my best to ward off the nausea that was overcoming me.

Before long I heard a voice.

“Ma’am, can you stand up and get into the vehicle for me?”

I’m thinking to myself, “What kind of an EMT would ask me to do that without even a cursory exam?”

“Can you hear me, ma’am?”

Finally I take the ice from my forehead and look up to see it’s a clown with a big red nose and a huge upturned white grin who is asking me to step into a golf cart. I was certain I’d knocked my brain loose.

After several confusing moments while we discussed the lack of foresight or budget allocated to their first aid preparation, he convinced me an ambulance was waiting at the perimeter gate.

Karen followed behind with all the kids in tow as we rushed to the hospital.

They ran a battery of tests that included everything but shaking a Magic 8 Ball. In the end, all signs pointed to a concussion. I have never felt so sick in all my life. I had two black eyes and a huge knot on my head. When I saw the eye doctor a few days later, he speculated that my sunglasses saved me from breaking my orbital bones.

I managed to come away from that experience without any residual physical effects, but one thing is certain: I had developed a newfound fear of walking. I never leave town without my cane, and if I go to a store for a loaf of bread I’ll be pushing it around in a grocery cart. It’s not that I need an assistive device to be upright, I just can’t trust my feet.

I used to fear balance issues as my body’s greatest source of betrayal, but drop foot has taken its place. When I begin to tire or know I will have to walk for more than 25 feet unaided, I deliberately high step, figuring if I pick my legs way up in the air, my toes have less chance of tripping me up. While it might look silly, I believe it has saved me from kissing the concrete on numerous occasions.

If it gets worse I think I’ll look into a brace, but for now I’m taking MS one (careful) step at a time.

*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.

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