16 posts tagged “veteran”

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 am working on all of it slowly” — Member David opens up about his experience with PTS

Posted April 13th, 2016 by

Meet member David (david61060), a United States Air Force veteran who’s living with multiple conditions including PTS, sleep apnea, and epilepsy. When we caught up with him, David shared what it was like to grow up as a “navy brat,” his experience in the military, and how It took him more than nine years to admit to himself that he had PTS.

Below, see what he has to say about triggers, coping with more than one condition, and the value of connecting with others on PatientsLikeMe.

Tell us a little about yourself.

To tell you about myself … well I was a navy brat and grew up mostly around just military kids and people connected with the military, every 3 to 4 years moving to a new base. Except in the 70s we stayed in the Republic of Panama for 6 years, leaving there in 1976. I was 16 — that was the hardest move. First year of high school … leaving behind a lot of friends that I knew I would never see again. Moving to California and graduating high school, I went into the Air Force. In my 15 years I saw a lot and did a lot but my last tour was the worst: Desert Shield and Desert Storm.

I came home with so many problems – depression, seizures, nightmares, waking up in a different room than where I went to sleep … then the divorce and losing the house. The car we had broke down and I had to walk or take the bus to the base (fortunately we did not live far from the base).

Most of the military doctors at Kelly Air Force Base did not seem very sympathetic to my problems including weight gain because of the drugs … blackouts at work THEN the notification that I was being discharged because of my weight gain. The next thing I knew I was in a true padded cell with the bed bolted to the floor.

If not for my older brother (a fighter pilot in the USAF) and my father (a retired USN Officer) stepping in and having multiple conferences, I would have been discharged with out a hope of help from the VA or the US government.

You wrote in a forum post, “Some people … did not want to even hear or listen to me.” How did you find the courage to open up about your PTS?

Opening up about my disorders — PTS and my seizures — I was originally very quiet about my problems. I do not even know if my parents who I lived with even knew. An assistant at the VA in Martinez, CA recommended that I go to a meeting at the mental health unit, and I did. I met one of the best doctors I have known, Dr. Kotun.  She recommended that I go into one-on-one therapy, so I did.

It took me more than nine years to admit to not only myself but to my therapist that I was suffering from PTS.

In your profile, you list epilepsy, depression, and sleep apnea as some of the other conditions you live with. How has it been managing these in addition to PTS?

Managing and just attempting to live with them are not really that different. Being sure that I take my pills three times a day is a real trial for me. In the morning there are 12 pills (including vitamins and other OTC pills). Getting my sleep is and can be the hardest part. Sometimes the nightmares and the sweats can be the hardest part of the day. Putting the mask on for the sleep apnea at times seems like putting on that gas mask … just dozing off and I hear a car horn that sounds like the warning siren. The mask suddenly feels constricting … I end up awake for hours afraid to have to put it back on. Usually I do not until the next night.

As I said before I think living with all I have can be really trying for me and my new wife but I have to go on — I have to — the other choice is not an option.

Some people have shared their PTS “triggers.” Do you know your triggers, or do symptoms happen unexpectedly?

My triggers for my PTS seem to happen when anything military is close— the helicopters flying overhead. Hearing munitions going off, and sometimes it could just be a memory that that was triggered — walking in a park and we come to a fence line and the area suddenly looks like the area close to one of the bases I was at, then a car backfires and I drop to the ground and reach for my weapon. In the long run it can be embarrassing to react like that in public. This had stopped me from even going out the park or into the city but I am working on all of it slowly.

And then there are times that I just have that feeling for no reason and the fear comes over me again like a wave. It makes no sense.

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

Connecting with others and talking to others about my problems and seeing theirs has been a remarkable window to work with … to realize that if we all open up we could help each other. Being that there are others on the site that are not veterans but have a lot of the same problems has been very helpful to me, and I hope to others that I have written to as well.

 

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“It is definitely a daily challenge” – An interview with PTS member Holden

Posted January 11th, 2016 by

Holden Montgomery (holdenmonty), an administration support technician for the Air Force Space Command, was deployed to Afghanistan in 2010 and later diagnosed with PTS, depression, and anxiety. He joined PatientslikeMe in March 2015, where he’s been connecting with other vets and sharing how he copes with his conditions.

We recently caught up with Holden, and here’s what he had to say…

Tell us a little about yourself. What are your hobbies and passions? 

So I must admit that when I started with this journey after my deployment and home break-in/vandalism I didn’t really have any hobbies or passions. Since my only focus while I was deployed was to live until the next day, that is the mindset that I came back with and still struggle with, but I will touch on that later.

So the biggest thing that saved me when I was struggling the first several months before my first son was born was photography. I have a Nikon D5100 DSLR and I would go exploring in nature and take photos of whatever I thought looked awesome or beautiful. I have thought about doing that again here in Colorado Springs but when you wake up to Pikes Peak every day and it’s always there you tend to take the beauty that is around you for granted. I must admit though just about every sunrise and sunset is breathtakingly beautiful.

But lately, after I attended my first Soldier Ride with the Wounded Warrior Project towards the end of June of 2015, I really got into bicycling and that has become my main hobby and passion. It’s also kind of amazing how you change because I have started to notice that one of my passions is wellness. I know I need to work on my own personal wellness but I have started to be more passionate about wellness in general.

In your profile, you mention dealing with anxiety and depression in addition to PTS. What are the challenges of managing three conditions?

So even though I was initially diagnosed with PTS in 2011 and anxiety in 2014 it wasn’t until I spent a week at a behavioral health clinic in the middle of June of 2015 that I was diagnosed with all three. But being diagnosed with all three gave me some peace of mind. Well as much as you can with mental health conditions.

For me it seems like the cause of my PTS was several things that combined together. Between multiple different things from my deployment and then a couple months after I got back my home I was living in at the time was broken into twice in the same week. It seems to be very similar with PTS from what I have seen that people that have PTS tend to have anxiety and/or depression as well. It seems like what led to my diagnoses of PTS was kind of a snowball effect of different things, and it seems like PTS tends to be a combination of different conditions. For me it’s anxiety, and depression. That is what people tend to see of my PTS. My therapist that I have here in Colorado Springs told me that she sees me as having anxiety with no other symptoms which was rather aggravating because I knew there was other stuff. It is definitely a daily challenge.

I heard an analogy one time and I really liked it and I hope it doesn’t offend somebody but if it does I’m sorry but it has helped me with my PTS and stuff. PTS is like cancer, you treat it and work to get ride of it and once it is gone there is a lot of relief and you try to move on with your life the best that you can but in all actuality it seems like there is no 100% cure and that it is always in remission. There can be any number of different things that can happen and it comes back. Sometimes it comes back but is very minor and is easily managed and sometimes it seems like it comes back with a vengeance and tries to kill you.

What has your experience been like tracking your moods, quality of life, and PTS symptoms on PatientsLikeMe?

I have really enjoyed tracking my mood and quality of life when I make sure to update it regularly. It may sound kind of weird but when I put how I’m feeling that day or in the moment with a small description of what is going on then somehow I’m not able to lie, or make it sound not as bad. I’m blunt and sometimes brutally honest. Which is really nice and refreshing since I tend to lie to myself about how I’m feeling.

I know there is a way that you can print out how you have been doing to bring to your therapist but I haven’t actually done that yet. I guess I am still trying to tell myself and the world that everything is ok and that there is nothing going on with me until I can’t stuff my emotions anymore and I explode. I guess I’m still afraid of that stereotype that society has drilled into me that if you have mental health issues then you can’t be trusted around “normal” people.

 You mentioned journaling as a way of handling your anxiety. Do you have any other coping strategies for people with PTS, depression, or anxiety?

I really enjoy journaling. It’s kind of like another way of the whole mood tracking and quality of life tracking. I can’t really lie when I’m writing it down.

I did run into a little bit of a big question. I filled up one small notebook that I used. It’s small enough that it can fit in my back pocket so I keep it always with me. But then there is the thought about what if somebody gets a hold of it and uses what I wrote against me or reads it, what would I do? So I thought about burning it or shredding it so nobody would ever be able to read it. I talked about it with my therapist and I wrote a small disclaimer in the front cover that basically states whatever is in here was how I felt at the time and I have addressed how I was feeling have resolved it to the best of my ability.

But anyway bicycling has been my biggest go-to besides journaling. I have created a coping card that is small enough to fit in my pocket which would help if I actually kept it on me and looked at it constantly. But some of the things on it are talking with trusted individuals which unfortunately seems to be growing smaller and smaller. But anyway walking, deep breathing/quiet time, looking up inspiring quotes, reading my Bible, listening to music, taking pictures of nature, take a shower, use my stress ball, and getting to my safe place, and thinking, which might seem weird but tends to be in a tree. I don’t climb the tree but I find a pine tree that is full enough that if I walk far enough into it nobody will be able to tell that I’m there. I guess you could say hiding from the world and thinking.

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

I have really enjoyed connecting with other vets on PatientsLikeMe. But I must admit more importantly than connecting with other vets is connecting with other individuals with PTS/anxiety/depression because even though everybody has their own story, you can end up in a darker place if you start comparing stories.

For instance when I was deployed I wasn’t allowed off base because I was an IT guy and kept the network for my squadron running and computers running. But with an accumulation of events while deployed and after my deployment I have been diagnosed with PTS but one of my best friends that I met here through the Wounded Warrior Project has a spinal cord injury, traumatic brain injury, and PTS from being blown up when he was out on a convoy in Afghanistan. He is worse off than me and I used to tell myself that he is the kind of person that deserves the help that I receive because he has seen and been through some much worse stuff than I have.

I don’t have a spinal cord injury, or a traumatic brain injury. But we help each other, I share with him some thoughts that I have that I must admit I tend to be ashamed of because they aren’t the kind of thoughts that I would normally have had before everything and more times than not depending on the situation he has had the same thoughts or if he was in my situation would have the same thought, and we challenge it together. Just sharing how you feel with another individual that might be feeling the same way or something similar no matter how different your stories are is a really powerful thing. So really the biggest thing is just the fact that you are connecting with somebody that has a similar diagnosis. Really, diagnosis doesn’t even really matter— just somebody feeling similar to you. Somebody that you can relate with.

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Joining the effort to find answers from brain diseases and injuries

Posted November 11th, 2015 by

In honor of Veterans Day, we wanted to share two stories from our partner, One Mind.

First, the story of retired Colonel Gregory Gadson, who was wounded during his military service and was living with post-traumatic stress (PTS). PTS affects more than 7.7 million Americans each year.

The second video shares the story of Roxana Delgado, Ph.D. Roxana’s husband Victor was hit by an IUD during military service. She has lived the emotional toll of being his caregiver.  

If you’re a veteran, you can connect with more than 9,300 others in the PatientsLikeMe Veterans forum. Together, we can join the effort to find answers to brain diseases and injuries.

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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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Tackling brain illness, together

Posted September 4th, 2015 by

Our partners at One Mind are advocating for a better understanding of the brain in general, and they’ve narrowed it down to a single statement:

Our brains need answers.

And that’s why they launched the “Needs” campaign story, underneath the hashtag #BrainsNeedAnswers. Think about it – what does your brain, or the brain of a friend or family member, need? It’s not just about researching better treatments or improving the diagnostic process for conditions like PTS and TBI. Rather, it’s about everybody coming together to share their own experiences with brain injury to help raise awareness and increase general knowledge about brain health. Tankmartin, a PTS member of PatientsLikeMe, is the centerpiece of the campaign. Read what he had to say:

If you’d like to participate in the #BrainsNeedAnswers campaign, visit One Mind’s website to learn more about how you can make a difference. And if you’re living with PTS, TBI or another mental health condition, reach out to others like you in the PatientsLikeMe community and find the answers to your own brain questions.

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“I can see that there actually is help here.” – JustinSingleton shares his experiences with PTS

Posted August 21st, 2015 by

JustinSingleton is an Army veteran who recently joined PatientsLikeMe back in June, and he’s been exploring the veteran’s community ever since. This month, he wrote about his experiences in an interview, and below, you can read what he had to say about getting diagnosed with PTS, managing his triggers and the importance of connecting and sharing with fellow service members. 

Can you give us a little background about your experience in the military?

In 1998, I joined the Ohio Army National Guard as an Indirect Fire Infantryman – the guy that shoots the mortars out of a big tube. For six years I trained on a mortar gun, but after being called back into the Army (I left in 2004), I was assigned to an Infantry Reconnaissance platoon, and I had no idea what I was doing. Before heading to Iraq, we trained together as a platoon for six months – learning not only the trade, but to trust each other with our lives.

It wasn’t until March 2006 that we arrived in Iraq, and I was assigned to the Anbar Province, which at the time was rated as the worst province of the nation. I was deployed in the time leading up to the need for “the surge.” As we drove the highways of the Anbar, we were shot at, mortared, and bombed. Intelligence even found “wanted” posters of one of our vehicles (we named it Chuck Norris).

When were you diagnosed with PTS?

I wasn’t diagnosed with PTS until many years after the war (I tried to “fix” myself), but the traumatic events are actually multiple, including receiving indirect fire on what was supposed to be my last mission – just a week or so after two good friends were evacuated after being maimed for life.

What have you done to manage your symptoms of PTS?

At the beginning, I refused medicines – I thought I was strong enough to beat it on my own. I worked with a VA counselor before moving for a semester. While there, I worked with a university student/counselor, but nothing was really helping. Finally, I went to my Primary Care Physician and told her that I needed more. The VA psychiatrist tested some medicines, but one needed to be changed (this is normal). Finally, the combination of medicine and individual therapy created within me a sense of “I might make it.”

You joined PatientsLikeMe in June 2015.  As a newer member, what do you think of the veteran’s and PTS communities?

I joined this community because although I feel better than before, I still need the help of others. I can see that there actually is help here.

You’ve mentioned in the forum that your triggers seem to be non-combat related – can you describe your triggers?

In one of the forums I mentioned my triggers. These, to me, are odd. Bridges, garbage on the side of the road, and even a midnight stroll have triggered panic attacks or anxiety. Often, simply being in a grocery store too long causes anxiety to the point that I take a quarter of Ativan, squeeze my fists or the cart, and head to the door or checkout (whether finished or not). While this has caused an impairment in life, it has never been “the end” of life. These are objects on my road to a healthy living – objectives to be conquered.

Although there is a prevalent idea in the Armed Forces that a man/woman should never ask for help or ever see a physician, I have found that to be a rather juvenile view on life. The greatest thing a veteran facing PTS or anxiety can do is not try to face it alone. We are a community, a brotherhood, and only together with a good doctor can we ever hope to survive.

What advice do you have for other military members who may be experiencing PTS and related conditions?

Twenty-three of our brothers and sisters quit every day. I refuse to be a part of that statistic.

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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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Patient, caregiver, wife and mother – Georgiapeach85 shares about her experiences with MS and her husband’s PTS

Posted June 22nd, 2015 by

Ashleigh (Georgiapeach85) is a little bit different than your typical PatientsLikeMe member – not only is she living with multiple sclerosis, she also a caregiver for her husband Phil, who has been diagnosed with PTS. In her interview, Ashleigh shares her unique perspective gained from her role as a patient and caregiver, and how PatientsLikeMe has helped her to look for a person’s character, not their diagnosis. Read about her journey below.

Hi Ashleigh! Tell us a little about yourself and your husband.
Hi! I am 29 and my husband Phil is 33. We have been married for 9 and a half years, and we have a son who is almost two 🙂 . I was diagnosed with Relapsing Remitting MS in July 2009 just before my 24th birthday. My husband served in the Army Reserves for just over six years and did one tour in Afghanistan in 2002. I met him while he was going through his Med Board and discharge. We met while working at Best Buy – he was Loss Prevention, the ones in the yellow shirts up front – and I was a cashier and bought him a coke on his first day 🙂 . We dated for nine months, were engaged for six, and got married and haven’t looked back!

What was your husband’s PTS diagnosis experience like?
It has been hard as his wife to see him struggle with first acknowledging that he had stronger reactions to small things in life than most people would and that perhaps he should seek outside help and then the struggle to get the care he needs from the VA. He is finally seeing a counselor next week after requesting he be evaluated for PTS a year ago. He has never had insurance other than the VA so has to rely on their lengthy processes for treatment. He was given a preliminary evaluation in March for the claim and was told that he definitely needed to be seen further, but then the VA made no follow up.

One of his manifestations is getting very frustrated very quickly, so I try to make all of his doctor appointments for him so he doesn’t have to deal with the wait times and rudeness from the VA employees. I have spent hours on the phone getting the right forms filled out and referrals done. I am proud of him for not giving up on it and seeing that he needs to learn some situational coping strategies so that we can enjoy life as a family. Phil loves camping and the outdoors where things are peaceful and open, so we belong to a private camping club and he loves to take our son and dog up there to get away.

You have a unique perspective as both an MS patient and a caregiver for your husband. Can you speak about your role as a caregiver and some of the challenges you face?
The biggest challenge I face is remembering his reactions to crowds and loud stimulating environments when we are choosing where to go. We have had to leave restaurants because they have been so busy and crowded just waiting for a table that he gets very panicked and apprehensive about being able to get to an exit quickly. He does just fine most places, but crowds and small areas stress him out. I handle making all of my appointments for my MS and his for his medical needs so it can be stressful sometimes while trying to work full time and be a mom.

How has PatientsLikeMe helped you expand your role as a caregiver?
I am just exploring the Post-Traumatic Stress section to see what others are experiencing. I never even thought about getting support for being a caregiver for Phil, I just always assumed he was the only one with caregiving responsibilities for me, but I see that I need to learn what I can about what he is going through so that I can give back the support he has given me over the years and through my diagnosis. Just as I want to be open about my MS, but don’t want it to define me as a person, Phil wants to learn to address his experience in Afghanistan and how he reacts to situations outside his control, but doesn’t want to be defined by a label of PTS. PatientsLikeMe has helped me to look for a person’s character, not their diagnosis. I have met many wonderful people and it is a great relief to know I can log on and vent or seek guidance from people all over the world.

What has been the most helpful part of the PatientsLikeMe site with regards to your MS?
Well I found the best neurologist ever through the site by looking up people who were on Low-Dose Naltrexone for their MS (which is an off-label prescription my former neurologist thought was not worth pursuing), then I sorted by those geographically closest to me, and I sent them a private message as to who prescribed them LDN. One of the members gave me Dr. English’s name at the MS Center of Atlanta, and that center has been a godsend for the care and advancements I have been exposed to. In a similar circumstance, I have made a new friend when a lady two years older than me found me under a search for those in her area and through messaging we found out that her son and mine were born on the same day, just one year apart! She lives 10 minutes away and Phil and I have become friends with her and her husband and that has been so great to have a female friend my age, with MS, and with a young child. Beyond the connections, being able to search for a medication and seeing how it is working for others and their reviews has been immensely helpful.

What’s one piece of advice you have for other caregivers who are also managing their own chronic conditions?
Just because there might not be a cure doesn’t mean you can’t learn a lot about life and yourself in the journey for caring for someone you love. Learn to take the good days with the bad and be thankful for life and being around to give support. In my case, I care for my spouse whom I love with all my heart and will be with for the rest of our lives. You have to view the big picture when you get caught up in the stress of day-to-day or certain circumstances, it’s the only perspective you can take when you’re in it for the long haul 🙂 . Also, don’t feel guilty when you need to take a break for yourself, you are only good for others when you have charged yourself up.

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Getting to know our Team of Advisors – Charles

Posted June 8th, 2015 by

We’ll be featuring three Team of Advisors introductions on the blog this month, and first up is Charles, a veteran Army Ranger who is also living with MS. Below, Charles shared about his military background, his thoughts on patient centeredness and how he’s found his second family in the Team of Advisors.

About Charles (aka CharlesD):
Charles has a diverse background. He served three years in the US Army 75th Ranger Regiment parachuting from the back of C-130 and C-141 aircraft. He built audio/video/computer systems for Bloomberg Business News. He worked as an application systems engineer in banking, as a computer engineer at the White House Executive Office of the President (EOP), and as a principal systems engineer for the US Navy Submarine Launched Ballistic Missiles (SLBM) program. He is currently a contractor providing document imaging Subject Matter Expertise (SME) to the IRS. Charles was diagnosed with MS in July of 2013. MS runs in his family on his mother’s Irish side – he has one uncle and two male cousins with MS.

Charles on patient centeredness:
With experience in website design, Charles believes patient centeredness is a lot like user centeredness when designing a web site or a portal: “Information is organized according to the patient (or the user’s) view of the world. Questions that the patient most needs answered are listed front and center. The design is based on addressing the needs of the patients (users). Info is organized cleanly and logically with possible visual impairments, color perception problems, and cognitive issues of patients (users) always in mind. Research should focus on areas that will make the most difference to the patients. Ask them. Survey them. Get to know the ‘voice of the patient’ just like we look to capture the ‘voice of the customer’ in user-centric design.”

Charles’ military background:
“I joined the US Army in 1986. I did basic training and AIT at Fort Jackson, SC. After that I was off to 3 weeks of jump school at Fort Benning, GA. Then I went to the Ranger Indoctrination Program (RIP) again at Benning. I was then assigned to HHC 75th Ranger Regiment.

I spent 3 years with the 75th training for a lot of pretty cool missions. We trained a lot for airfield seizures. Basically parachute onto a foreign airport or airfield, wipe out all resistance, take the tower, and make way for our big planes to land shortly after. We had early generation night vision goggles (NVGs). I drove a Hummer full of Rangers off the back tail ramp of a pitch black C-130 that was still rolling after touchdown while wearing NVGs. They were no help at all inside the plane since they only amplify existing light. If you are pitch black you are still blind. It is a wonder that I did not kill anyone or damage the C-130 that night.

So I joined up right after Grenada and I got out right before Panama. I never saw any combat. These days I volunteer my time with, and financially support, a veterans group called gallantfew (www.gallantfew.org), started by retired Ranger Major Karl Monger.”

Charles on being part of the Team of Advisors:
“Being on the PatientsLikeMe Team of Advisors has been a wonderful privilege and an excellent opportunity for me. As a person with a brain disease, it is not always comfortable talking with others about my illness. When the Team of Advisors first met up together in Boston, I knew that I had found my second family. I was together in a room where every single person there was struggling with one or more diseases, many of which can be fatal. In fact, one of our team members, Brian, died after serving for only a few months. It was such a warm and welcoming environment. All of us were able to speak openly with each other and with PatientsLikeMe staff and we were heard. Each story, no matter how painful, resonated with the whole group.

All of us in the first PatientsLikeMe Team of Advisors shared many of the same goals. We are an extremely diverse group, but we all bonded immediately. What we want is to help conquer the diseases that have caused problems in all of our lives. We want to improve the relationship between researchers and the patient community. We want to help health care providers to better understand the patient perspective. And we want to make the world a better place for the next generation and for all generations to come. PatientsLikeMe embraces those goals and we embrace PatientsLikeMe. Together we are taking on all diseases.”

Charles on healthcare for veterans:
“As a veteran, health care issues are very important to me. I have seen so many veterans return home with wounds to body and mind. Many are shattered and have no idea what to do with themselves next. Some turn to drugs and alcohol, others to fast motorcycles or weapons. Suicide is rampant among newly returned veterans. The VA is woefully underfunded to take on the mission of supporting wounded and traumatized veterans. In the halls of Congress, the VA is seen as a liability, an unfunded mandate. Many veterans are denied the coverage they so desperately need. Many active duty service members are forced out with other than honorable discharges for suffering from PTSD or TBI. This limits the liability of the VA to support the veteran after separation. A good friend of mine who died recently put it this way. He said to me, ‘The military operates on the beer can theory of human resources. Picture a couple of good old boys out for a good time. They go down to the local liquor store and grab a nice cold six pack of beer. They go down to the lake, they each pop the top and they each start chugging a wonderful ice-cold beer. When they get through the first beer, they crush the can and throw it away. They grab another and another until the beers are all gone.’

I didn’t understand how this related to the military. He explained, ‘The brand new ice-cold beer is like a new recruit. The military sucks everything they can out of the person until all that is left is the empty shell. Then they toss that out and go grab another one just like the last one.’

We don’t deserve a health care system that treats returning veterans as empty shells. We can do better, but the current system is clear reflection of the value system at play in Congress. Funding for weapons programs are highly protected. Funding for the people who wielded those weapons systems is not. My answer may seem a bit cynical, but that is how I see the current state of affairs.”

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“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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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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