5 posts tagged “coping”

Going the distance for MS awareness

Posted March 6th, 2017 by

Meet Cheryl (CherylRunner), a marathoner living with MS. Since it’s MS Awareness Month, we sat down to chat with her about what she’s doing to raise awareness: running 7 marathons on 7 continents in a 12-month span. So far under her belt are South Africa, Argentina, Hawaii, Antarctica and Japan, and now she prepares to cross Austria off her list. See what she has to say about overcoming the physical limitations of her condition.

You’ve run 54 marathons and 41 of those have been after your MS diagnosis. How has running changed for you since your diagnosis?

Cheryl Hile MS marathon runner

Photo by Rachel Hatch

Running has given me so much. When I was first diagnosed and depressed, running was my therapy to cope with the overwhelming sadness. However, I started tripping and falling while running. I thought I was tired from overtraining. I soon learned that I was falling because I have a common symptom of MS called drop foot. My running became laborious and depressing. My neurologist told me to lower my expectations and that ignited a fire in me to not give up. I found an orthotist and he fitted me with an ankle-foot orthotic (AFO). It’s made of carbon fiber, so it’s light and flexible enough for running. It is not necessarily made for marathons, per se, but I make it work despite the cuts and bruises. I guess that is a long way of saying that running has made me stronger.

Aside from your custom carbon fiber ankle foot orthotic, what other things do you do to help with your running?

I cross train to help with cardio-vascular fitness. My husband and I ride 20-30 miles along Pacific Coast Hwy very early in the morning (traffic scares me, especially being clipped into the pedals).

I also lift weights. My right thigh is very weak from MS and I can only lift it 3-4 inches off the ground. I do a lot of compensating with my left side when I run. I try to strengthen all of my muscles to try to keep them in balance, but I do have atrophy in my right leg.

In general, what advice would you give for someone living with MS who wants to work towards becoming more physically active?

First, I have to throw in the caveat to talk to your doctor first! Next I suggest setting small, attainable goals. For example, if you don’t exercise at all, make a goal to walk 10-15 minutes, then start increasing by 5-10 minute increments when you feel confident.

My very first running race was a marathon (because I’m crazy). That was a big goal and I attained it, but I suffered a lot at the beginning. My first training run was down my block and I walked back home crying. My husband likes to tell everyone that story! But I kept at it and in 6 months I went from one block to 26.2 miles. It was a slow marathon, but I did it! However, I should have signed up for shorter races first to keep my morale high.

Small attainable goals and small concerted efforts to make change!

Right now you’re in the middle of a big idea you had to raise money for the MS Society. You committed to running 7 marathons on 7 continents in the span of a year. You’ve already run in Cape Town, South Africa; Buenos Aires, Argentina; Honolulu, Hawaii; King George Island, Antarctica; and Tokyo, Japan. Next up are Vienna, Austria, and Christchurch, New Zealand. What’s been your favorite experience so far? What’s been a challenge?

Cheryl Hile MS marathon runner

Photo by Rachel Hatch

I’ve had a lot of great experiences. My favorite marathon so far is Cape Town. The scenery was beautiful, the people were very friendly and even though it is a large international marathon, it felt like a tight knit community. The highlight of the trip for me was connecting with the Multiple Sclerosis South Africa group. They were absolutely lovely and even though our trip was short, we bonded. Meeting people and making friends are my favorite things about my trips. People really make it more special.

The White Continent Marathon was by far the biggest challenge. I was prepared for the cold, but I underestimated the terrain. It was very rocky (from pebbles to boulders) and it was so painful on my feet. I had to walk a lot of it because my right foot kept sliding. I can feel my left foot and use my toes to balance myself. However, my right foot is numb and I cannot move my toes well. That, coupled with a rigid footplate on my AFO, made it hard to keep steady on the undulating terrain. I was sore in places that I didn’t know had muscle!

We’ll be following up with Cheryl once she finishes her final two races in Vienna, Austria, and Christchurch, New Zealand. You can keep track of her progress on her blog!

On PatientsLikeMe

Cheryl talks about having drop foot, something reported by 990 members on PatientsLikeMe. She’s had success using an ankle foot orthotic (AFO) to treat it. Here’s what members have to say:

In fact, members have a lot more to say about this – 101, 941 forum posts worth, to be exact. See what they’re saying and learn more about who’s experiencing drop foot!

What are you doing to raise awareness about MS this month?

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“The most important thing is to know you are not alone” — Member Vicki opens up about her TBI

Posted September 13th, 2016 by

Vicki (Vickikayb) is an avid gardener, volunteers at a wildlife rehabilitation center and loves to cheer on the Kentucky Wildcats. She’s also been living with a traumatic brain injury (TBI) since 2004. In a recent interview, Vicki shared how she lives a full life in spite of her condition and how it’s inspired a new interest in brain injury advocacy: “Who better to give a voice to this cause than someone who is living with a TBI?”

Check out what she has to say about discovering new coping methods and finding support from others who understand.

Can you tell us a little about yourself? What are your hobbies and interests?

I am originally from the Kansas City area in Missouri until 2010 when I moved to Kentucky to be closer to my daughter and her family. I received my traumatic brain injury in 2004 from an impaired driver who rear-ended me going 74 miles per hour while I was at a dead stop.

I spend my time volunteering for Kentucky Wildlife Center in Lexington, KY. We take in all kinds of wildlife babies and rehabilitate them so that one day they can be released into the wild again. I helped them with a vision that they had to raise a vegetable garden with no pesticides which has been successful. I am also helping with a garden at Neuro Restorative where I attend therapy sessions. I find working in the dirt and growing plants, vegetables and flowers is a successful coping skill, which is helpful when I become emotional.

I also volunteer with Brain Injury Awareness of Kentucky. Just this past summer I helped distribute bicycle helmets, bringing awareness to the safety of riding a bicycle with proper equipment — a helmet — no matter what age. We fitted the helmets to children, teenagers and adults.

When it comes to watching sports on TV or at a stadium, I am there supporting my team, the Kentucky Wildcats. I am always eager to learn about different topics, especially brain injury, which is close to my heart. At the end of the day I am working towards being an advocate for any type of brain injury. Who better to give a voice to this cause than someone who is living with a TBI?

What was your diagnosis experience like?

Getting my diagnosis was the easy part for me; the difficult part was finding the right help I needed to start my journey to healing. At the time I was still living in Missouri and my daughter was living in Kentucky. So everything was left up to my doctor and me to work on my deficits, which at the time I didn’t view as severe. I participated in physical therapy and speech therapy until I hit the amount of units you were allowed per year on Medicaid. My daughter found out from other people that I was not doing as well as I was portraying. I was broke because of my impulsivity with money and I was sleeping on other people’s couches here and there. This is why at the end of 2009 I moved to Kentucky because my daughter was expecting her first child and I wanted to be close by.

Even in Kentucky I continued the downward spiral till I hit bottom, not taking my medication when prescribed, sleeping at odd times of the day and not eating well. That is when my family said they didn’t have the education or knowledge to be able to help me. That is how I ended up at NeuroRestorative in Georgetown in 2011. I started in the residential program where during the days I received occupational therapy, behavioral support, counseling, and speech therapy. Since that time, I have graduated from speech therapy and moved out on my own in November of 2012. I am fortunate that Kentucky has a waiver program that covers the cost of these services. I wish more states would have this option as well. This is when my journey to healing started!

In your profile you talk about writing down your thoughts as a form of therapy. How has it helped you manage your TBI? Do you have any other coping methods?

When I came to Neuro I had no idea what coping skills were, let alone how to practice them. First of all, I learned about the Coping Skills Triangle which consists of thoughts, behavior and emotions (pictured).

At first I started journaling for my sessions with my counselor so I wouldn’t forget to talk about certain topics. That’s when I started seeing that writing was a way to express myself. At the time they had a newsletter at NeuroRestorative in which I decided to write each month entitled, “Just My Thoughts,” where I would write about my struggles, coping skills and any issues that I was going through at the time. My purpose was to show other participants that they were not alone and that other people were struggling just like them. I have everything that I have written since 2012 and recently have put them all into a blog called “Learning Vicki.”

Furthermore, I have a big list of different coping skills that I use to help me when I feel overwhelmed or I’m not thinking clearly. I had them written down at first so I could pull them out when needed but today I find myself just doing them without thinking. Some of these coping skills are taking pictures of nature, walking my dog and visiting with my neighbors. At home I even turn up the radio and start dancing in my apartment. I do whatever brings enjoyment to me and takes my mind off the situation until I am ready to handle what is bothering me.

You’ve mentioned that “education is the biggest tool you can give other patients.” What’s the most important thing you’ve learned in your journey with TBI?

First of all, I have put myself out there to others to let them know that they are not alone on this journey. I feel the most important thing I have learned in this process is to share my experience. When I first found out that I had a brain injury, my thoughts were all over the place and I wondered what my next step would be.

I found out that a few of the people I went to high school with also had head trauma. So, I contacted them personally saying that I also had a TBI and maybe we could support one another. I kept talking to one friend in particular to see how he was doing and gave him an outline of how I began my treatment — who diagnosed me, how to talk to his doctor and how to receive therapeutic rehabilitation. That was a year ago, and I am happy to say that friend is now back at work and starting to regain some of his life back.

If I can’t answer a question for someone, I will see if I can find out the answer and get back to them. The most important thing no matter what disease or injury you might have is to know you are not alone and there are others who are either going through the same battle or have beaten it. We all need to be each other’ cheerleaders, to encourage each other to hang on because tomorrow is going to be better and we will get through it together.

How has it been connecting with others on PatientsLikeMe?

It has been a wonderful experience being able to talk to other people who are going through the same illness that I’m experiencing. It helps because you realize, “I am not the only person going through this or that feels like this.” It has also taught me to be thankful for what I have. It has been a tool to educate myself on what some other people might be trying or what didn’t work. I love being able to keep track of my moods, my emotion charts and how I’m feeling overall, and to read others’ messages of encouragement.

I also like sharing my data with researchers to help them with clinical trials, and being able to find articles that help me better understand my condition. It is great to be able to go to one site and find everything that you need. I wish I had known about PatientsLikeMe back in 2004. Every chance I get I tell people to go check the site out!

 

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“I am not a quitter, I never have been” – An interview with lung cancer member Jacquie

Posted November 19th, 2015 by

Jacquie today.

For Jacquie (Jacquie1961), a business owner and entrepreneur from New Mexico, 2013 was the worst year of her life – she’d lost two beloved pets to old age and then was diagnosed with lung cancer, which soon turned into colon cancer. After rigorous chemotherapy and the adoption of a new dog, Roman, Jacquie joined PatientsLikeMe this past

Jacquie in September of 2013, shortly before her diagnosis.

September and has been sharing her positive, never-back-down attitude with the rest of the community. We took time to connect with her recently and this is what we learned…

Tell us a bit about your life.

After a long career of juggling my own real estate firm and landscaping company, I decided to obtain my esthetician’s license in 2011. In late 2012, I opened a spa for skincare. It was in 2013, as I was building up my new business, that I got my first diagnosis of lung cancer.

What I didn’t know was that I also had cancer in my colon that went unnoticed by the first oncologist I had. I was getting sicker by the day, losing more weight, but no one even did any blood work on me or examined me for five months. I asked about chemo and was told every month that my doctor hadn’t decided on that yet. After Christmas of 2013, my parents urged me to change oncologists.

Jacquie with her boxer, Roman.

Because I was severely anemic, I spent a month and a half getting blood weekly before I could have a colonoscopy under the care of my new oncologist. In March of 2014, I was diagnosed with stage 4 metastatic lung to colon cancer. My surgeon told me that there were only 12 documented cases of lung to colon cancer and the prognosis for life expectancy was not good. I had the colon surgery with resection and started a hellish year of chemo. It wasn’t until May that I closed my business because my job was now to save my life!

I have a new dog, a Boxer named Roman. He is my rock! He’s a rescue and came into my life at the right time. He gave me a reason to get up in the mornings, take short walks, laugh and have a constant companion as most of my time was spent in bed if I wasn’t at chemo or the hospital or a doctor’s office. I never had children so animals to me are my family. The only good part of 2013 was finding Roman.

Jacquie and her father on her wedding day.

How has your life changed since your diagnosis?

Wow, I have to say I am not the same person I was before I was diagnosed and gone through everything I did. I don’t think anyone can. I find myself less tolerant of people who complain about the smallest of things like burnt cookies because they don’t matter.

Material wealth means nothing to me anymore. I lived well, worked hard and made good money. Now that is not that important to me. I’ve had all that and lost it due to cancer. And anyone’s life can be changed on a dime. So cherish what you have now, enjoy life and create memories. And take care of your health.

I am also now in the process of starting a new business with my father – a pawn and antique shop. It’s coming along slowly, but we’ll get there soon to open.

Cancer is a mentally and physical life altering journey. Mine was pretty extensive, but I am sure there are a lot of other women and men who can identify with this. If you approach it with knowledge and a positive attitude the transitioning is much easier.

In 2013, Jacquie was recovering from lung cancer surgery and her family wouldn’t let her be without a Christmas tree. Knowing her love for the ocean, they brought her a white tree. In 2014, after recovering from lung and colon cancer, Jacquie added 2 smaller trees as symbols of her strength in fighting cancers.

I lost all of my hair head to toe in the first few treatments of chemo, but I made it work with hats and an assortment of wigs. Cute hats, wigs, and learning ways to use makeup can make a huge difference in how you see yourself and how you feel about yourself. I still went to charity dinners, events, and I’ve done several fashion shows for cancer even on chemo. No one was the wiser that I was even wearing wigs. I never liked looking at myself in the mirror but accepted it as part of my “job.” My hair is growing back in and I’ve gone out in public. It’s not me at all, but it’s who I really am right now.

Now is the part where I pick up the pieces and put myself back together. How do I deal with the hair growing back? I let it breathe, use some cream to style it and a headband. I wear my wigs or a cute cap when I am running errands. I am trying to put together a monthly course to teach women how to apply makeup and wear scarves. I am lucky that I already have the experience, but it surprised me how many women do not know what to do with themselves so they stay home. Not right…Getting cancer is bad enough but having to feel ugly shouldn’t be part of it.

You mention that you had to be your own advocate with doctors. What would your advice be to others who must advocate for themselves?

As I explained above regarding my first oncologist, I learned from that experience that I better watch out for myself. I didn’t have anyone who had experience with cancer to tell me what to do. Having been through this and seen the mistakes made with my care, I’m adamant that if something is not right with me or I don’t feel right I talk to my doctors about it. I read every scan and I ask questions. Doctors are very busy and it’s easy to get lost in the shuffle. Keep a file with all of your tests. Keep a journal of things you need to have done. I know every three months I have to have scans and a colonoscopy. I often have to remind my doctor that it’s time. Keep track of your scripts as well.

You’ve said in a recent forum post that you’re “a firm believer in keeping up a fight even in the face of adversity.” What keeps you going? And how would you encourage others in your situation to keep going?

I am not a quitter, I never have been. Even given a diagnosis I may not live very long, I was sure to prove the doctors wrong. And yes, I am still here. I was ready to start living life again and then recently hit another bump in the road with a diagnosis of coronary artery disease. My cardiologist will decide whether to put in stents or do bypass surgery. Okay, whatever it takes. And now, I’m also supporting father – my best friend – through his first experience of chemo. After a bout of bad health, I took him over to my doctor and she diagnosed him with non-hodgkins follicular lymphoma stage 4. Since I’ve been through this, he is now my patient.

This August, Jacquie modeled for a local cancer charity, CARE. All funds raised go to people of her town for assistance with bills and medical expenses.

Some days I think my world is falling apart, but I still keep going. I think there is more work for me to do on this earth and God picked me to do it. I’m not a religious fanatic by any means but I have had a world of prayers around me. Everyone is different in how they handle traumatic and life-changing events. I try to tell people to find strength within, that there is light at the end of the tunnel. I see the beach at the end of mine and know I will get there someday soon. People need goals, baby steps – and remember that tomorrow is another day. Every morning and day is a gift that was not promised. Take that gift with gratitude. And spread it!

It doesn’t have to be a curse or a death sentence. It is an illness. You’ll have good days and bad days. If people find themselves depressed or anxious and unable to cope there is help. Find a support system, a therapist, a best friend, a forum like PatientsLikeMe. Surround yourself with positive people. You are a survivor and that is something to be very proud of. I have a group of friends and we call ourselves the Warrior Women. We are a tough group who’ve fought the beast and we are winning.

You’ve been very supportive to other members in the PatientsLikeMe forums. What has been your experience on PatientsLikeMe?

I’m very glad that my mother actually told me about this site. It makes me feel good to think that just maybe I can help someone else because of my experience. Or maybe I know of some way that their journey will be easier on them. I’ve enjoyed conversing with several other women. I’ve also learned more about lung cancer than I knew before through others’ experiences and how they are dealing with it now. I know it’s better and helpful to talk or converse with others who’ve experienced the same thing you have or similar. It’s hard with family and friends as I believe one can’t truly understand what you have been through unless they have gone through it themselves. PatientsLikeMe brings like-minded people together.

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A Peek at the March Newsletter for Members

Posted March 27th, 2012 by

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our March edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to recently, and if you are member who’s not opted in to the newsletter, sign up today

MONTHLY MUSINGS

Flare.  Exacerbation.  Attack.  Acute episode. These are a few of the different terms used to describe a multiple sclerosis (MS) relapse—which can last anywhere from 24 hours to several weeks to even months.

MS isn’t the only condition that has exacerbations, however.  This pattern is also common with fibromyalgia (FM), rheumatoid arthritis (RA), psoriasis, IBS, depression and more.  Just check out all the threads tagged with either “flares” or “relapses” across the forum.

A Quote from a PatientsLikeMe Member Regarding Her Personal Coping Trick:  A "Bad Day Box" of Favorite Items

How do you get through an attack?  In a recent discussion in the MS forum, suggestions included lots of rest, watching movies, a pinch of good humor, letting go of guilt, accepting help, pacing yourself, having easy-to-prepare food on hand, talking to your doctor and trusting that “this too shall pass.”

And in the FM forum, one patient has shared her unique trick: a “bad day box” full of uplifting items.

Got your own coping techniques?  The forum is all ears.

Kate, Emma, Liz, Jeanette & Sharry

Kate"" Emma"" Jeanette"" Sharry""

JOIN THE CONVERSATION

What’s happening in the forum?  Check out some of the recent threads about flare-ups below.  Then jump in with your own questions and answers.

Need help with something on the site?  Visit the PatientsLikeMe Site Help Room for answers from veteran members.

LABS, LABS AND MORE LABS

One of Many Labs You Can Add to Your PatientsLikeMe Profile

Things have gotten a lot more lab-tastic at PatientsLikeMe. Thanks to your requests and suggestions, we now offer some 200+ labs to help you monitor your health conditions.  Here’s a sampling of some of the new labs and tests you can add to your profile:

Wondering about another lab?  Search for it here.


One for All: A Cross View of Patient Sharing

Posted February 4th, 2011 by

With more than 82,000 patients on PatientsLikeMe, there’s a lot of information being shared with one another.  Last month, we highlighted how your sharing affects the experience of many on our site (One For All series).

commgraphicToday, we continue that theme by taking a look at information being shared across all of our communities that many of you may have in common. Can you guess how many of you are on similar treatments or experiencing similar symptoms even though you are in different communities? Read on to find out.

DID YOU KNOW…

  • Of the members who have reported their age, more than 8,000 of our of you have indicated you’re under 30-years old and more than 12,000 are 55-years old or older.
  • Approximately 31% (or 27,013) of patient members across all communities experience depression.

How are you treating your condition?

What are your major symptoms?

What are you talking about?

  • Some of most frequently “tagged” topics in the forum include research, symptoms (e.g., pain), SSDI (Social Security Disability Insurance), coping strategies and side effects.

A special thank you to all of our members for continuing to share your data and experiences to help others just like you.