29 posts tagged “PTSD”

Lady Gaga reveals her struggle with PTSD

Posted March 3rd, 2017 by
Lady Gaga PTSD

LADY GAGA / TWITTER

Musician Lady Gaga recently revealed in an open letter that she is living with PTSD. In the letter, posted to the Born This Way Foundation website, she discussed her struggle with the condition since being sexually assaulted as a teenager: “I have wrestled for some time about when, how and if I should reveal my diagnosis of Post Traumatic Stress Disorder (PTSD). After five years of searching for the answers to my chronic pain and the change I have felt in my brain, I am finally well enough to tell you.”

In the letter, Gaga touched on living with and managing the symptoms of the condition, and that she experiences something called dissociation, which can present itself in a range of experiences – she opened up about how it impacted her: “…my mind doesn’t want to relive the pain so ‘I look off and I stare’ in a glazed over state… My body is in one place and my mind in another. It’s like the panic accelerator in my mind gets stuck and I am paralyzed with fear,” she wrote. “When this happens I can’t talk. When this happens repeatedly, it makes me have a common PTSD reaction which is that I feel depressed and unable to function like I used to.” Gaga also revealed she tends to experience somatization, which means she experiences physical pain related to her mental state.

Along with fighting against the stigma associated with mental illness, Lady Gaga also hopes to raise awareness for all people living with PTSD, including those outside of the military: “Traditionally, many associate PTSD as a condition faced by brave men and women that serve countries all over the world,” she wrote. “While this is true, I seek to raise awareness that this mental illness affects all kinds of people, including our youth. I pledge not only to help our youth not feel ashamed of their own conditions, but also to lend support to those servicemen and women who suffer from PTSD. No one’s invisible pain should go unnoticed.”

The news made headlines globally and the musician pledged to continue to share her experiences and manage the condition as best she can. “I will never give up on my dreams of art and music. I am continuing to learn how to transcend this because I know I can. If you relate to what I am sharing, please know that you can too.”

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Meet Christopher – “PTSD is not just soldiers whining and complaining about struggles in life”

Posted February 15th, 2017 by

Say hello to Christopher (ChrisBC), a father, musician and Purple Heart recipient living with PTSD and bipolar disorder. We recently caught up with him to hear about how PTSD affected his marriage and how his diagnosis pushed him get the help he needed and connect with his feelings.

Keep reading to learn how he copes with stigma and the one thing he wishes people understood about PTSD.

Can you tell us a little about yourself? What are you passionate about?  

I was born in Seattle WA, and my family moved to Alaska where I grew up. I joined the Army when I was 19 years old and went to my first assignment at Fort Polk, Louisiana. I spent the next 22 years in the Army. During my time in the Army, I was stationed in seven different locations including Germany. I had five different deployments of varying lengths with three combat, and two peacekeeping. I received a Purple Heart as well as many others in my platoon during my Iraq tour for being wounded under enemy fire. I retired in 2014 and have one daughter who is 11 years old.

I am passionate about music and I play the electric bass guitar for the church that I attend now here in NY. I have played guitar since I was 8 years old and have been playing bass guitar about 12 years. I’m also passionate about family, church community, and raising my daughter.

How has PTSD affected your life? What’s the most challenging aspect of your diagnosis?

PTSD affected my life in a big way in my marriage. It was my then wife who noticed the differences in me and encouraged me to go get help. I finally went after struggling with the symptoms and believing that I didn’t have it and I was strong enough to forget the things I had been through.  Once I knew that I had PTSD and was diagnosed, then I started getting help for even more things that I was struggling with that needed to be addressed.

The most challenging aspect of my diagnosis is being in touch with my feelings. I would tend to block out my feelings and hide them deep inside and put on a false persona because I was scared. I still struggle with this today and have so much support helping me to make it through this.

How do you cope with stigma? 

I believe there should be a law against stigmatizing those of us with PTSD and other mental illnesses. I cope with stigma by not talking about it with those that stigmatize, that don’t understand it, because they already have their views and I don’t like to confront people. I believe the stigma is a real thing and when I see it makes me angry and upset. People are going to do what they are going to do and I just don’t want to discuss issues with them when they won’t understand it. Basically, I use avoidance to deal with stigma.

What’s one thing you wish people understood about PTSD?

I wish people understood that PTSD is not just soldiers whining and complaining about struggles in life. We all have those, but when you have PTSD you are dealing with a 24 hour, 365 days a year illness that is a constant struggle.

What advice can you give others who are struggling with PTSD? What do you find most helpful?

The advice I would give others is to have a support team to help you. Find a psychiatrist, and a psychologist, for those that don’t already have those. Those are the two most important people that will help you through those real hard times when the symptoms are overwhelming.

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“I have been trying to push myself more, little by little.” Member Christopher shares his journey with PTS

Posted October 11th, 2016 by

We recently got the chance to talk with Christopher (crine312), a computer-savvy dog lover and U.S. Air Force veteran living with PTS and bipolar. Christopher opened up about life after serving in the military — how he sometimes still  thinks in military time and tries to avoid news reports about war — and the challenges of holding a job with PTS. Get to know him him better below, and see what he has to say about the PatientsLikeMe community: “I keep coming back and posting in the hopes that I, in turn, can help someone else.

Can you tell us a little about yourself and what you’re interested in?

First, I am adopted. Due to being adopted, I have a rather LARGE family. I have five older brothers and sisters, and seven younger brothers and sisters. Due to the adoption, I am the youngest of six and second oldest of nine (my oldest half-sister and I were adopted by the same family). I grew up in Charleston, South Carolina as a Navy brat. My interests are reading anything I can put my hands on, computers, gaming and my dogs.

After serving in the Air Force, how has it been adjusting to everyday life again?

In some ways it is rather hard adjusting to civilian life. First, I still eat too fast. Second, I have to think in “military” time, since it helps me with timing and alarms, and translate it for others. Third, in the North, they are not used to the “Yes, Ma’am,” “No, Ma’am,” “Yes, Sir” or “No, Sir,” and I have to mentally cut myself off at “Yes” and “No.” Fourth, it was especially hard to watch news reports of the war in Iraq and Afghanistan due to seeing or hearing names of people I had served with or knowing that equipment I had worked with was being used and what it could do. I had to avoid Greta Van Susteren especially, since she posted names before breaks on her show on Fox News. Finally, it was hard to come back to civilian life and face some people who, not knowing anything, would call me a killer. It took a long while to grow a thicker skin and some help from Vietnam Veterans who could identify with the same problems.

You mention in your profile about the challenges of working with PTS. Can you share some of these difficulties?

Hypervigilance, although it was a good thing in the military and drilled into you daily, just leads you into paranoia and anxiety about everything. I second guess everything I do and I have to do it perfectly or as near-perfect as possible. Most jobs have only been six months, mainly because I lose focus or get bored (I do not feel challenged). I have a lot of lows that are what I call “energy sappers.” At these times, I do not really feel like getting out of bed or doing anything. Another challenge I face is forgetfulness, which my psychiatrist says is “normal” for PTS and some bipolar patients (unfortunately, I have both). I can and will forget what seem to be simple things — wallet, keys, phone or words. It is frustrating to search for my wallet, keys or phone when they are right in front of you the whole time. I used to be a spelling bee champion while in school, so imagine how irritating it is to have to search for the word that should be right on the tip of your tongue, but is not.

Along with PTS and bipolar, you’re also living with other conditions including diabetes — how has it been managing multiple conditions?

It has been difficult at times. My lows are usually extra low (PTS and bipolar II do not play well together). I am irritable if I go too long without my Metformin. I have learned quite a bit about my limitations, but have been trying to push myself more, little by little.

You’re pretty regular about updating your symptoms and tracking your health on PatientsLikeMe. How has your experience on the site been, and what keeps you coming back?

I have had positive experiences with the site since I joined it. I have found that the people are helpful and insightful. I have learned about alternative treatments I want to try. I keep coming back and posting in the hopes that I, in turn, can help someone else.

Things that help me in my everyday life are my wife and friends who encourage me. I have dogs who help liven up my day, no matter how annoying they can be at times. I play games on the Xbox on days that are especially bad, it helps to distract my mind from things.

 

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“I’m happy to say that I’ve made tremendous progress” – An interview with PTS and TBI member Trevor

Posted October 14th, 2015 by

Trevor Martin, a Veteran of the United States Army was deployed to Afghanistan twice from 2009 to 2012 and was later diagnosed with both a mild TBI and PTS. He joined PatientsLikeMe to connect with others living from these conditions. Our friends over at PatientsLikeMe sat down with Trevor to learn more about his life with PTS and TBI. Here’s what we learned….

Some people talk about PTSD ‘triggers.’  Do you know your triggers, or do symptoms happen unexpectedly?

I know some of my triggers, like trash on the side of the road. In Afghanistan they would put IEDs under piles of trash to hide them on the side of the road. So I know if I see that today, my heart starts to race, I get hyper-vigilant, and I start to think something’s about to happen that I need to avoid.

You mentioned that you feel a lot of pressure to be who you were before the war.  How are you different since returning home? 

I used to be the fun guy. All my friends would come to me and we’d go out and go shooting and joke around. It’s hard now because a lot of my friends don’t really understand. They don’t really know what I’ve gone through and what I’ve seen because it’s hard to talk about. The friends that I have told don’t really believe it.

What has it been like connecting with other vets on PatientsLikeMe?  

There are things you’ve done or seen that you will never forget. I don’t want anyone to ever imagine the things I see when I close my eyes at night. I wouldn’t wish that on anyone. It takes a lot for me to come out and talk about it. It’s been easier to connect with people online instead of in person. If I hadn’t found the site, I honestly don’t think I’d be here right now.

I haven’t been on this site for very long but man, I’m glad I found it. Since telling my story in a forum called “PTSD, my story and a cry for help” a couple months ago and reading all of your stories, I’m happy to say that I’ve made tremendous progress within myself. I’ve only had maybe 5 “freak outs” since joining. Whereas I was having 5 a day before. Half of the battle is knowing that you’re not alone in this, we’ve all done and seen different things but in reality, we’re all the same.

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The Patient Voice- PTS member David shares his story

Posted June 27th, 2015 by

Today is PTS Awareness Day, so we wanted you to meet PatientsLikeMe community member Cpl. David Jurado, who lives with post-traumatic stress (PTS). David developed PTS while serving in the military. After he retired, he continued to deal with daily symptoms, and he encourages members to connect with others on PatientsLikeMe, because “if you want to make changes for yourself and the PTS community, you’ve got to share your story. The same thing may be happening to them.”

David is not alone – and neither are you. There are more than 1,000 vets living with PTS that are part of the community. We’ve heard members like David talk about how important it is for them to connect with people who ‘get it.’

Not a veteran living with PTS? You’re not alone either. With more than 8,000 PTS members, it’s easy for anyone with PTS to share their story and get support.

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Give veterans access to the care they need

Posted March 11th, 2015 by

By Peter Chiarelli, retired U.S. Army general & CEO of our partner One Mind

As originally seen in the Washington Post

Soldiers listen as U.S. Secretary of Defense Ash Carter (not pictured) holds a question-and-answer session with U.S.military personnel at Kandahar Airfield in Kandahar February 22, 2015. (Jonathan Ernst/Reuters)

 

The high-grossing film “American Sniper” was nominated for an Academy Award for best picture, but it deserves higher honors for highlighting one of the greatest causes of casualties in our recent wars: post-traumatic stress (PTS).

The story of Iraq war veteran Chris Kyle, who was killed by a Marine veteran suffering from the effects of PTS and other mental-health problems, makes a powerful case that PTS needs to be a higher national priority. (You’ll note that I don’t include the word “disorder” at the end of PTS; the longer PTSD label actually discourages some service members from seeking treatment.) Since “American Sniper” debuted, Veterans Affairs and Defense Department leaders have been highlighting their programs for helping veterans diagnosed with PTS. But are those programs working?

In too many cases, the answer is no. Our PTS diagnostics remain crude, and no drugs have been approved specifically for treating the condition. Complicating matters, because of genetic and other differences among individuals, patients react differently to varying drugs and dosages. Finding the right mix can be a frustrating saga of trial and error. The wrong drug or dose can, if not caught in time, become a factor in other serious mental-health and behavioral issues, even including suicide.

It only makes sense that once Defense Department doctors identify an effective treatment for a service member, that same treatment should be available when the service member leaves active duty and moves to VA for care. More often than not, however, it is not.

The disconnect occurs because Defense has an all-inclusive drug formulary that allows clinicians to prescribe almost any medication approved by the Food and Drug Administration, while VA has a very limited formulary, primarily to control costs. Medically discharged service members who are given a 90-day supply of PTS prescriptions eventually must report to their VA medical facility for refills, where they are often denied — not for medical reasons but because the medications they rely on are not on VA’s approved list.

This is not a case of one prescriber issuing Bayer aspirin while another uses Saint Joseph. Service members whose symptoms are being controlled by specific anti-depressant, anti-anxiety or anti-psychotic drugs, as well as pain and sleep medications, are forced to give them up and search for a replacement — often a painful and dangerous process — simply because Congress has failed to require Defense and VA to harmonize their drug formularies.

Let me be clear: The problem is not that doctors within the two systems disagree over which drugs should be part of their formularies. Their hands are tied. They must operate within the rules set out by Congress.

Rather than repeating the laborious process of finding another drug that works, many veterans have told me they sought out private providers to fill their prescriptions, usually paying for their medications out of pocket. Imagine how they feel about VA when their first experience with the agency is a doctor telling them they cannot fill a prescription that has relieved their PTS symptoms for months or even years. In some cases, the veteran is not even given enough of the recommended drug to safely discontinue its use.

I have testified about this serious discrepancy, most recently as a member on the Military Compensation and Retirement Modernization Commission, and have discussed it privately with members of Congress. A few have said they will try to address the problem, but most have declined, citing the added cost to VA of a fuller formulary and the time the Government Accountability Office would require to determine the budgetary impact of such a change. Shouldn’t the long-term cost, danger and social impact of denying vital medications to veterans provide a sufficiently compelling reason for Congress to act?

The obvious solution is to include the same medications in both formularies. If this is not possible, Defense Department doctors should exhaust all the options available on VA formulary first before considering any drugs not covered by VA. If neither of these options can be adopted, Defense doctors should at least warn service members that their current prescriptions will be unavailable in the VA system.

This problem needs to be fixed immediately. A directive released by VA in late January seeking to address the problem without correcting the misaligned formularies contains too many loopholes and is totally inadequate. We need a solution, and not a patch. Chris Kyle’s death underlines the urgency of providing effective treatments for PTS. We can start by getting the Defense and Veterans Affairs departments on the same page.

Learn more about One Mind.

Read what the PatientsLikeMe community is saying about Peter Chiarelli’s article.


“I am slowly building my self-esteem “ – PatientsLikeMe member SuperChick shares about her journey with PTSD

Posted March 4th, 2015 by

PatientsLikeMe member SuperChick is a veteran living with post traumatic stress disorder (PTSD), and her story is one of learning to cope with emotions and frustrations. She’s living proof that things can get better – she’s a loving mother of two, has a great husband and is managing several other mental health conditions. Below, she shared about the sexual abuse she experienced while serving in the military and explained how her previous husband physically assaulted her. Superchick also describes the symptoms of her PTSD and how the community on PatientsLikeMe has been “a huge help” to her. Read about her journey below.

Note: SuperChick shares about her story of abuse, which may be triggering.

Can you speak a little about your PTSD and what led to your diagnosis in 1986?

I was originally diagnosed with PTSD after being raped while I was in the military. I believe I was more susceptible because I had been molested as a child and didn’t have good family support or dynamics. I worked through it, but was diagnosed again in 2007 after leaving a severely abusive marriage, where I was raped multiple times and choked at least twice. I was emotionally abused and didn’t even realize it was abuse. I stayed for fourteen years trying to change myself because my ex-husband had convinced me I was the problem and couldn’t do anything right. It destroyed my self-esteem and any healthy coping skills I had.

What are some of the symptoms you experience because of your PTSD?

Since being diagnosed with PTSD the second time, I have numbed my emotions, I experience anxiety, and I have trouble falling and staying asleep even though I may be thoroughly exhausted and am taking medications for sleep. Sometimes I am afraid to go to sleep. I sometimes have nightmares, although not nearly as often as I used to. I have difficulty fully trusting my current husband, or people in general for that matter, even though I know he would never harm me and treats me with tremendous respect. I have suffered from a very low self-esteem and for a long time felt responsible for the trauma. I react more intensely to triggering situations than other people would. I am slowly building my self-esteem, but that is still a struggle for me.

You’ve got two wonderful children – how does PTSD affect your family life?

Because my children spend half their time with their father, I worry about them when they’re with him because I know how abusive he can be. I worry about them being sexually abused or harmed and am very protective of them around anyone I don’t know very well. I’m afraid of my daughter becoming involved in abusive relationships when she grows older and my son becoming an abuser. In a positive sense, I am very affectionate and make time to listen to them and engage in activities I know they enjoy because I want them to experience healthy love. I am remarried to a man who truly loves and respects me. My husband and I try to model a healthy relationship for them.

It’s hard for my husband and me, though. The fact that I still have to be involved with my ex-husband and am told over and over again by the court system, child protective services, and all the mediators we’ve worked with that I have to get along with him makes things very difficult. It minimizes or completely dismisses the trauma I’ve experienced. My husband wants to protect me, and this makes him feel frustrated and powerless. There is no way to get along with a narcissist and abuser. I want to move on and not have him as the focus of our lives, but then something happens and it starts all over again. Sometimes my husband feels shut down when he suggests something I have already tried and found to be futile.

I’ve come to realize that while I have been dealing with all of this for over seven years, he came into this halfway through and is in a different place than I am, having to deal with emotions and frustrations I’ve already experienced and dealt with. He is beginning to understand that his approach can sometimes trigger my symptoms, so when he feels like I’m shutting him down I am actually trying not to go back to that pain. It’s hard in that respect for me to be there for him. We plan to go back to family therapy to help develop a healthier focus for our lives. We’ve been dealing with adversity that has out of necessity been the major focus of our lives, but now we need to move on.

How have you learned to live and cope with your PTSD?

I’ve been in therapy since before I left my marriage, and finally found a therapist who has helped me overcome many of the symptoms of PTSD through EMDR (eye movement desensitization and reprocessing), which helps change the way I react to the memories. For the most part, I am able to remember the trauma without it bothering me. I still experience triggers, but am able to process the emotions using cognitive behavioral therapy skills and journaling. When I am triggered, I make sure I take care of myself through prayer, talking with my husband and therapist, and doing things that help me relax, ground me, and fully engage my mind, like playing my flute and piano.

The community on PatientsLikeMe has been a huge help. I’ve been able to get support from people all over who have been through what I was going through, and that has helped me cope and make better decisions about my health. I was able to see what my main issues were through the mood map and monitor the effectiveness of my medications. There were many times the PatientsLikeMe community were far more helpful than my doctor.

You’re also living with bipolar II, depression and a few others conditions – how do these affect each other?

I believe the PTSD triggered the bipolar, because I never had symptoms until after I left my marriage and had symptoms of severe PTSD. As I look at symptoms of PTSD, it explains a lot of behaviors I didn’t fully understand, like self-harm, which began as I started to talk about and process the trauma of long-term sexual abuse in my previous marriage. As I’ve worked through many of the issues causing the PTSD, I’ve found that I no longer experience the symptoms of bipolar and have been able to decrease my medications. If I do experience depression now, it is short-lived and related to a specific experience.

As a veteran, what is one special message you’d send to your fellow veterans also living with PTSD?

I think veterans have experiences that only people who have been in the military can understand. Military units are like family, and I find I miss that sense of community now that I’m retired. Meeting with other veterans, especially those with shared experiences of PTSD, may be helpful because those people are more likely to relate well.

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“You can get better” – PatientsLikeMe member jeffperry1134 shares about his journey with PTSD

Posted February 12th, 2015 by

Many veterans are a part of the PTSD community on PatientsLikeMe, and recently, jeffperry1134 spoke about his everyday life after returning home from military service. In his interview, he touched upon his deployment to Somalia in the early 1990s, and how his memories of Africa cause daily symptoms like anxiety, hallucinations and nightmares. But despite everything, Jeff remains upbeat and reminds us that there is always hope. Scroll down to read what he had to say.

Note: the account below is graphic, which may be triggering.

Can you tell us a little about your military service and your early experiences with PTSD?

I entered the military in the Army in July 1990 as a heavy wheeled mechanic. I went through basic training and AIT at Ft. Jackson, SC. I went to my first permanent duty station in December in Mannheim, Germany. I was assigned to a Chinook helicopter unit. My unit was very relaxed and we got along well. As soon as the war broke out we received our deployment orders. We returned home in July from deployment. My PTSD was early onset after returning from Desert Storm. I experienced nightmares, depression, alcohol abuse and drug abuse. At the time I was a 19 year old alone in Germany away from my family struggling with this mental illness. My supervisors were able to help me hide my problems well and it was not discovered at that time. I feared being singled out for having these problems. Three days before it was my time to PCS stateside our company was deployed again, this time we were going to Somalia. I was told I could leave but I felt guilty so I volunteered to stay and deploy with my teammates. We deployed in November 1992 and returned in June 1993. During my time in Somalia it was rough. During the deployment my job was perimeter guard duty and body remover. During the deployment I used local drugs of Khat and Opium Poppies to control the symptoms of my illness. After returning from Somalia not only did I have the symptoms that I had earlier but now I was hallucinating hearing voices, smelling smells and seeing flashes. I went stateside a week after we returned. I went to Ft. Leonard Wood, MO in an engineer unit that was strict. I made a huge impression with my skills as a mechanic and a soldier so when I was having problems my superiors hid it for me to keep me out of trouble. I did get in trouble once after a night of heavy drinking and smoking marijuana and was given an article-15 for being drunk on duty. Before that day I had still considered myself as a career soldier and I decided then that I was not going to re-enlist. I spent the rest of my military time waiting to get out and finally July 1994 came and I was out and had a job at a local car dealership as a mechanic. After working a while I got into a verbal confrontation that turned physical with the business owner and had to be removed by the police from the dealership. After that my thinking became bizarre and very hyper-vigilant. I took newspaper clippings and taped them to a door so it would motivate me to exercise harder and be ready if I were ever in a life or death situation. At the time I was working with a great therapist and she did wonders for me keeping me stable. She convinced me to take my medications and stop drinking daily.

What were your feelings after being officially diagnosed? 

I was blown away when I was diagnosed in 1995 after a suicide attempt that ended up with me being hospitalized on a psych unit for a week. My sister walked in on me at my apartment with a loaded gun in my mouth. I was resistant to treatment or even acknowledging that I had this illness. I was linked up with a therapist and psychiatrist before leaving the hospital.

What are some of the symptoms you experience on a daily basis?

On a daily basis I usually deal with a lot of anxiety, some depression, occasional hallucinations and nightmares. On a bad day I will have sensory hallucinations with me smelling dead bodies, burning flesh or cordite. Usually when that happens I get physically sick.

You recently completed the Mood Map Survey on your PatientsLikeMe profile – what have you learned about your PTSD from your tracking tools?

I learned that my PTSD is not as well managed as I would like it. It made me press my doctor to give me an antipsychotic medication and I have a new therapist at the VA that is working hard to help me identify when my symptoms are becoming worse.

By sharing your story, what do you hope to teach others about PTSD?

I just wanted to show that you can get better and that there is hope and that they can get through it.

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2014 recap – a year of sharing in the PatientsLikeMe community

Posted December 23rd, 2014 by

Another year has come and gone here at PatientsLikeMe, and as we started to look back at who’s shared their experiences, we were quite simply amazed. More than 30 members living with 9 different conditions opened up for a blog interview in 2014. But that’s just the start. Others have shared about their health journeys in short videos and even posted about their favorite food recipes.

A heartfelt thanks to everyone who shared their experiences this year – the PatientsLikeMe community is continuing to change healthcare for good, and together, we can help each other live better as we move into 2015.

Team of Advisors
In September, we announced the first-ever PatientsLikeMe Team of Advisors, a group of 14 members that will work with us this year on research-related initiatives. They’ve been giving regular feedback about how PatientsLikeMe research can be even more helpful, including creating a “guide” that highlights new standards for researchers to better engage with patients. We introduced everyone to three so far, and look forward to highlighting the rest of team in 2015.

  • Meet Becky – Becky is a former family nurse practitioner, and she’s a medically retired flight nurse who is living with epilepsy and three years out of treatment for breast cancer.
  • Meet Lisa – Lisa was diagnosed with Parkinson’s disease (PD) in 2008, and just recently stopped working as a full-time executive due to non-motor PD symptoms like loss of function, mental fatigue and daytime insomnolence. Her daughter was just married in June.
  • Meet Dana – Dana is a poet and screenplay writer living in New Jersey and a very active member of the mental health and behavior forum. She’s living with bipolar II, and she’s very passionate about fighting the stigma of mental illness.

The Patient Voice
Five members shared about their health journeys in short video vignettes.

  • Garth – After Garth was diagnosed with cancer, he made a promise to his daughter Emma: he would write 826 napkin notes so she had one each day in her lunch until she graduated high school.
  • Letitia – has been experiencing seizures since she was ten years old, and she turned to others living with epilepsy on PatientsLikeMe.
  • Bryan – Bryan passed away earlier in 2014, but his memory lives on through the data he shared about idiopathic pulmonary fibrosis. He was also an inaugural member of the Team of Advisors.
  • Becca – Becca shared her experiences with fibromyalgia and how she appreciates her support on PatientsLikeMe.
  • Ed – Ed spoke about his experiences with Parkinson’s disease and why he thinks it’s all a group effort.

Patient interviews
More than 30 members living with 9 different conditions shared their stories in blog interviews.

Members living with PTSD:

  • David Jurado spoke in a Veteran’s podcast about returning home and life after serving
  • Lucas shared about recurring nightmares, insomnia and quitting alcohol
  • Jess talked about living with TBI and her invisible symptoms
  • Jennifer shared about coping with triggers and leaning on her PatientsLikeMe community

Member living with Bipolar:

  • Eleanor wrote a three-part series about her life with Bipolar II – part 1, part 2, part 3

Members living with MS:

  • Fred takes you on a visual journey through his daily life with MS
  • Anna shared about the benefits of a motorized scooter, and a personal poem
  • Ajcoia, Special1, and CKBeagle shared how they raise awareness through PatientsLikeMeInMotion™
  • Nola and Gary spoke in a Podcast on how a PatientsLikeMe connection led to a new bathroom
  • Tam takes you into a day with the private, invisible pain of MS
  • Debbie shared what it’s like to be a mom and blogger living with MS
  • Shep spoke about keeping his sense of humor through his journey with MS
  • Kim shared about her fundraising efforts through PatientsLikeMeInMotion™
  • Jazz1982 shared how she eliminates the stigma surrounding MS
  • Starla talked about MS awareness and the simple pleasure of riding a motorcycle

Members living with Idiopathic pulmonary fibrosis:

Members living with Parkinson’s disease:

  • Dropsies shared about her frustrating Parkinson’s diagnosis experience and how diabetes might impact her future eating habits

Members living with ALS:

  • Steve shared the story behind his film, “My Motor Neuron Disease Made Easier”
  • Steven shared how technology allows him to participate in many events
  • Steve shared about creating the Steve Saling ALS residence and dealing with paramedics
  • Steve told why he participated in the Ice Bucket Challenge
  • Dee revealed her tough decision to insert a feeding tube
  • John shared about his cross-country road trip with his dog, Molly

Members living with lung cancer:

  • Vickie shared about her reaction to getting diagnosed, the anxiety-filled months leading up to surgery and what recovery was like post-operation
  • Phil shared the reaction she had after her blunt diagnosis, her treatment options and her son’s new tattoo

Members living with multiple myeloma:

  • AbeSapien shared about his diagnosis experience with myeloma, the economic effects of his condition and his passion for horseback riding

Caregiver for a son living with AKU:

  • Alycia and Nate shared Alycia’s role and philosophy as caregiver to young Nate, who is living with AKU

Food for Thought
Many members shared their recipes and diet-related advice on the forums in 2014.

  • April – first edition, and what you’re making for dinner
  • May – nutrition questions and the primal blueprint
  • June – getting sleepy after steak and managing diet
  • July – chocolate edition
  • August – losing weight and subbing carbs
  • September – fall weather and autumn recipes
  • Dropsies – shared her special diabetes recipes for Diabetes Awareness Month

Patients as Partners
More than 6,000 members answered questions about their health and gave feedback on the PatientsLikeMe Open Research Exchange (ORE) platform. ORE gives patients the chance to not only check an answer box, but also share their opinion about each question in a researcher’s health measure. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

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Finding others with PTSD

Posted December 5th, 2014 by

Sometimes it’s nice not having to explain yourself to people who don’t really understand what it’s like for you, and to surround yourself with people who just get it. As the PatientsLikeMe post traumatic stress disorder community grows, we’ve heard from our members who are veterans about how important it is for them to connect to other vets.

Here’s a conversation with our Product Manager and former Marine, Sean Horgan and community member, David Jurado (Jrock121). They shared about their struggles returning home after war, and how they missed their rooftop cigar time with the boys.

David shared some personal details about his journey living with PTSD: after self medicating with Jack Daniels and oxycontin, David found help and peace of mind, connecting with other Veterans, communing with mother nature, and stepping up as a role model for others. He now teaches people you can “replace bad memories with good memories” by working through your bucket list.

The beginning of his transformation started with this cute pup, Willett. Named after a service buddy who died in combat, Willett helped David get out of the house and re-engage with society. David is now Executive Director of Companions for Heroes, a company that places shelter dogs with vets living with PTSD.

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Raising awareness on Veteran’s Day

Posted November 11th, 2014 by

Right now, there are almost 22 million American veterans living in the United States, and every one of them has a story to tell. So today, we’re honoring their service by raising awareness for life after the military.

Like many others who are living with chronic conditions, the injuries our military men and women sustain are not always visible. Thousands of veterans are affected by post-traumatic stress disorder (PTSD), 30,000 have been diagnosed with a traumatic brain injury (TBI) since 2000 and many others are living with depression. Sometimes their symptoms don’t even manifest until many years after their service.

These eye-opening statistics are why we’ve recently announced a new multi-year collaboration with One Mind to help the millions of people worldwide who are experiencing post-traumatic stress traumatic brain injury, or both. We’ll work together to expand and enhance the PatientsLikeMe online registry experience for people with these conditions, to provide better resources for day-to-day living, and to capture more patient-reported data for research.

If you’re looking to learn more about US veterans, head to your nearest book store and grab a copy of “For Love of Country,” Howard Schultz’s and Rajiv Chandrasekaran’s new book (just released on November 4). Check out the video synopsis below:

 

There’s also the Concert for Valor today – it’s a free live event that is being organized on the National Mall in Washington, D.C. for veteran’s awareness. If you can’t make it in person, tune in on iHeartRADIO.

If you’re a veteran living with PTS or TBI, you can find others and connect to people who understand what you’re going through on PatientsLikeMe. There are more than 4,000 of members in the Veterans Forum, and every day, veterans are learning more about their health and the best ways to cope. Share a bond, and live better, together.

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“I was just doing my job” – PatientsLikeMe member Lucas talks about his experiences with PTSD after serving in the Marines

Posted October 21st, 2014 by

PatientsLikeMe member Lucas (Freedom666420), or Sarge, as his friends and fellow soldiers call him, served in the Marines during two tours in Iraq and was injured while literally hoisting his entire squad up and over a wall to take cover from enemy fire. He recently spoke with Sarah, a PatientsLikeMe community moderator, and shared about his experiences in an interview. Lucas talked about his recurring insomnia and nightmares, and how quitting alcohol and speaking with fellow veterans has helped him cope with his PTSD. Read what he had to say below.

Will you tell us a little about your story?
I enlisted in the military right before I turned 18, graduated basic training about a week after I turned 18. I was in the Marine Corps for about three years total after all the paper work was done. I was discharged medically- honorable retirement discharge because I was injured.

I was on my second tour, about half way through when we were taking air fire and I was trying to get everybody over the wall and I looked back, after I got the last person over, I looked back to make sure everything was clear and that’s when I saw an RPG coming at us and I pushed the last guy over the way and I was blown up. I was hit by shrapnel and the explosion blew me about 61 feet past the wall and when I landed I shattered my right heel and I had shrapnel across my face and shrapnel in my right hip. I walked back to base.

You want to make sure, whenever you’re a squad leader, you want to make sure everyone is safe before you are.

How many people did you get over the wall that day?
I got 22 people over the wall that day.

Wow, you’re such a hero.
I don’t say I’m a hero, I was just doing my job.  I like to be recognized for some things but I served in the military, I was just doing my job.

What are your experiences living with PTSD?
I have nightmares. Basically I have insomnia because I don’t sleep. Every time I do sleep, all I think about are my brothers that didn’t get to go home to their families. And the men that I served with all the way through basic SOI (School of Infantry) training and all my other training, there were several that I went with and I actually went to their families and gave them all the information they needed to know. I wanted them to know personally what happened and how everything went. Because most families never get closure from the military, they just get a statement saying your son (or daughter) has been KIA (killed in action) and they never give a reason of how they went. I wanted everyone’s family in my platoon to know how they went. I know my family would want closure if I were killed.

Are you currently treating your PTSD?
It’s something that I don’t know that I’m ever going to get past. There are things that are drilled into my mind right now that I don’t know that I’m ever going to get past.

That’s why the VA wanted to send me to a counselor and I told them I’m not going to go talk to someone who’s never been there before. There are people that I’ll talk to about some stuff, and there are people I won’t talk to.

It’s one of those things where you have to be very comfortable with the person you’re talking to. I had a horrible experience when I was younger with a counselor, so I don’t like counselors. I’ve been through ten of them.

I think I’m just better off going to the VFW (Veterans of Foreign Wars) because there’s one right in my town. I quit drinking so I go and drink a non-alcoholic beer or soda and I talk to them. I quit drinking a couple years after the military because for the first two and a half years there wasn’t a day I went sober. I drank constantly. There were days when people worried about me because I was always drinking. But I was able to sleep. I needed to be able to sleep, so I slept. I’ve been sober for going on 4 ½ years now, but I just wish I could close my eyes and not see faces.

What helps you cope?
Mostly I talk to another Vietnam vet. It just seems like talking about it makes it a lot better. It’s very helpful when you talk to somebody about it. I feel like you have to talk to somebody else that’s been through something similar. If you find an older man who maybe fought in Vietnam, they give you great input on everything.

It’s better to connect with somebody who you can open up to because you’re able to speak about it and try to get some relief for yourself because if you keep it all bottled up inside, it just gets worse from there. You know before I started talking to the Vietnam veteran who I’m talking to, there were plenty of times that I thought about killing myself. But after talking to him for the past two years now, I’ve honestly begun to feel like I don’t want to anymore. I’ve started a family and things are going better for me, I just still have nightmares and flashbacks, but things get better when you actually talk to somebody that has been through something similar.

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It’s time to recognize mental illness in October

Posted October 6th, 2014 by

Think about this for a second; according to the National Alliance of Mental Illness (NAMI) 1 in 4 people, or 25% of American adults, will be diagnosed with a mental illness this year. On top of that, 20 percent of American children (1 in 5) will also be diagnosed. And so for 7 days, October 5th to 11th, we’ll be spreading the word for Mental Illness Awareness Week (MIAW).

What exactly is a mental illness? According to NAMI, A mental illness is a medical condition that disrupts a person’s thinking, feeling, mood, ability to relate to others and daily functioning. [They] are medical conditions that often result in a diminished capacity for coping with the ordinary demands of life.”

There are many types of mental illnesses. The list includes conditions like post-traumatic stress disorder, bipolar II, depression, schizophrenia and more. MIAW is about recognizing the effects of every condition and learning what it’s like to live day-to-day with a mental illness.

This week, you can get involved by reading and sharing NAMI’s fact sheet on mental illness and using NAMI’s social media badges and images on Facebook, Twitter and other sites. Don’t forget to use the hashtag #MIAW14 if you are sharing your story online. And if you’re living with a mental illness, reach out to the mental health community on PatientsLikeMe – there, you’ll find others who know exactly what you’re going through.

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“This is a very serious issue” – PatientsLikeMe member Jess shares about her PTSD

Posted August 18th, 2014 by

Talking about past trauma isn’t easy – so we want to say thank you to Jess right off the bat. She’s a PatientsLikeMe member who suffered a TBI, and she recently talked with us about her experiences. Jess walked us through her accident and her diagnosis and went on to explain that even though you may not see visible symptoms, a person can still be suffering on the inside.

Will you tell us about your story and what happened?

On January 11, 2012, when my husband Tim, my daughter Amanda and I left home around 5:45 PM to pick up my friend’s children for church, we had no idea how much our lives would forever be changed. Statistics show most accidents are within 2 miles of your home, but I wonder what statistics are for accidents caused by your neighbor’s teenage daughter.

I was driving and waiting to turn into the development where my friend lives, and as I looked in my rearview mirror, I noticed headlights coming closer and getting brighter. I started yelling to my husband that the car behind us isn’t slowing down. I tried to hit the gas, BANG…I remember seeing the Ford emblem on my steering wheel, then next thing I knew…I was screaming for my daughter and husband. Then my husband jumped out of the car screaming at the other driver. All the while I’m stuck in the car and nobody realized how bad my injuries really were. My husband comes back to our car saying Jessie, it’s our neighbors daughter. My heart sank.

The EMTs called for the “Jaws of Life,” but I apparently wouldn’t have that with our daughter there, so they somehow relieved pressure and got me out.

I was taken to the nearest hospital, where I was diagnosed with a concussion, neck and back injuries and sent home that same evening. Yes, same evening. The doctor instructed me to follow up with my primary within two weeks if I felt no improvements. So here’s where it’s gets interesting: went to primary within in couple days because I wasn’t improving, and I was referred to neurologist and physical therapy.

I met with neurologist, and this would be the first time I would hear the term that would haunt me forever: Post-Concussion Syndrome. I was officially diagnosed, and I feel it’s been a downward spiral since. I started PT shortly after, all the while I had perforated my colon during the collision and was never checked. It leaked for 4 weeks until it finally ruptured and I went into septic shock at home. The surgeon said if my husband wasn’t home my daughter may have come home from school to find me lifeless in the bathtub. So the PT and head injury took a backseat to the rupture. That took many months of recovery, and my husband even put a temporary bedroom in our dining room because I wasn’t able to go upstairs to bed. That was the worse pain I ever experienced in my life.

I know I’m getting a bit winded here but there’s just so much to my story, all because of a 17 year old driving while on a device…

Once I recovered from the rupture, the neurologist and therapists discovered how severe my other injuries truly were/and still are today. I’ve been diagnosed with Post-Concussion Syndrome, PTSD, vision issues, dizziness, short-term memory issues (which my last evaluation showed was severely impaired), and tremors, which we are hoping isn’t Parkinson’s. These are just a short list because I can’t remember all of them at the moment.

How has that changed you and your family’s lives?

This has changed everything! I was supposed to be going to school to be a dentist at this point. It’s sad how somebody else can control your destiny for you and completely mess you up forever. I have God awful mood swings! I’m not the person I used to be, someone who my husband could count on that he could tell me a list of things to get done in a day’s time and I’d remember to do them. He doesn’t like me to cook when I’m home alone because I forget things are cooking and walk away from them on the stove. I’m only 41 years young and trapped in the mind of a 90 year-old sometimes. This injury has put a lot of pressure on my husband to not only provide for us but to worry about me and my health. He knows my health is never going to get better, and there’s always the fear of the long-term issues with head injuries. The unknown. All because of a 17-year kid, I’m sorry to keep saying it, but sometimes I can’t believe it myself.

What are some ways you cope with your conditions?

I cope with my conditions by leaning on my husband, he makes me laugh a lot! I cry a lot. I would like to speak out more about not driving while on a device but I’m working on it. I’ve done therapy but I didn’t feel as though the therapist “got it,” if you know what I mean. I’m learning every day to cope with my condition and so are my family members. It’s harder for them since this is a harder injury to see.

What is a good day for you, what’s a bad day?

I wake up every day hoping is this the day I will be “normal” again? A good day is when I can fully function without snapping or flipping out on my loved ones, when I can actually complete a full grocery shopping trip in one trip, when I have the energy to do laundry and make beds, and when my vision issues don’t act up to the point where I can’t see.

My bad day, I feel I could dig my own grave and lay in it forever, when the ringing in my ears is so terrible (like this very minute) I have to drown it out with white noise just to sleep, when I have to take medication to sleep every night so I get brain rest otherwise, I only get 2 hours of sleep, the worst day is when I’m falling a lot and so dizzy it’s like the drunk spins but without the party.

What do you want others to understand about living with PTSD and TBI?

The one thing I would like people to understand about PTSD is it’s not something to brag about having, it’s not glamorous, this is a very serious issue. I have panic attacks, nightmares and terrible anxiety sometimes so bad I won’t leave my house because I want to avoid getting back into the car again.

I want people to understand about TBI. Think of it this way: go home, turn on every television in your home full-blast, radio same thing, have your kids play around you really loud, and have flashing lights – now get on the phone and try to pay attention. You can’t. That’s what’s it’s like to have a TBI for me. I can’t filter things out, it’s really hard to. Sometimes I just need a quiet break.

To sum it up for both, please don’t judge a book by its cover, it may be masking a bigger issue. I hide my symptoms a lot more often than I should. Just because you can’t see the injuries doesn’t mean I’m not screaming on the inside.

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