53 posts tagged “patient interview”

“I finally feel like there is hope for me to have a life that has purpose.” – Member Robin shares her story living with complex PTSD

Posted June 21st, 2017 by

Robin (survivinglife) is a PatientsLikeMe member living with complex PTSD. Recently, she shared her story with us, from her childhood to now, delving into the hardships she’s faced and how she continues to find the courage to forge through. Content within this story may be triggering for some readers. Here’s her story…

complex PTSD story

I am a 41 yo female. I’ve never been married. I’ve never dated or had any type of long term relationships – even long term friendships. My mood swings and constant need to be reassured that I am cared about and wanted is too much for people to put up with for more than a couple of years at best, a few months at worst. My faith is very important to me – it is one of the reasons I have been able to be as successful as I have been in my life. I struggle every day with my faith – with believing that I was not an accident and that I have purpose to my life.

I live on 6 acres which I enjoy watching the wildlife and listening to the birds. I have 2 dogs – a pit mix and a poodle mix. They are so important in my life. They are my constant. My pit mix is a rescue and is extremely nervous around people she doesn’t know. My friends say we are like two peas in a pod, and I guess we are on some level. She is the reason I am still here. The only reason I chose to live was because she didn’t deserve to die and I know she will be put down if something happens to me – because of her nervousness around people and her breed.

I enjoy reading and watching TV. I also do most of my home repair and enjoy working with my hands – from building to plumbing to electrical. I use art to deal with emotions I can’t figure out or when I’m feeling overwhelmed. I used to self-injure but now have learned to channel that energy into art and writing. My art isn’t so good as I am self-taught, but I am learning about different mediums and also learning not to judge myself so harshly.

My PTSD is a result of childhood abuse and neglect. I was sexually abused by six different perpetrators from the ages of 3 to 15. At the age of 14 I miscarried my brother’s baby – alone and not knowing what was happening to me. I thought I was going to die. None of my sexual abusers knew about the others. I was physically abused by my brother, father, step-father and mother. I was mentally abused by my brother, step-father and mother. My mother stopped caring for me at the age of 6 when she and my dad divorced. I learned that it was best to be invisible from an age before I can remember. I only remember that I tried to hide constantly when I was home. I either stayed outside or in my room silently. I became a latchkey kid in kindergarten. In fourth grade while I was at my dad’s one weekend my step mom threw all my stuff on the lawn and told me never to come back.

 

“My escape from all that went on at home was school. I wanted to be there, I wanted to stay there and never go home. The only bad thing about school was that I never had any friends. I never learned how to make friends. I was always alone even though I went to the same school all twelve years.”

 

In 6th grade I was labeled gay by the kids in my class. I lived in a small town in the Midwest and this was the 80’s – being gay was absolutely unacceptable. I didn’t even know what gay was.  One of the teachers pulled me aside and ask me if what they were saying was true. I told her I didn’t even know what it meant. She told me to ask my parents and I said I couldn’t. I knew that if she couldn’t tell me then asking my parents would only result in violence. She finally told me in an age appropriate way what it meant and then ask me again. I told her I didn’t know. That I didn’t really like anyone that way and did that mean something was wrong with me. She assured me there was nothing wrong with me and told me the teachers would do what they could to get the kids to leave me alone. I was a total outcast from that point on, but I still excelled in school. It was my only out.

By high school my only friends were the custodians and teachers. They all knew something was wrong, but no one would address it because of my family’s standing in the community. I remember thinking the whole time I was in school, “What’s wrong with me. Why can’t I function like the other kids?” I didn’t know that everyone else wasn’t having sex with members of their family multiple times a week for their whole life. I thought it was normal to have sex with family members and to get beat up and told I was stupid and a waste of time. “Why can’t I smile, why can’t I laugh and have fun, what’s wrong with me?” I started being suicidal around 10 years old and began self-injuring in 6th grade. When I finally graduated from high school I got a scholarship for twelve hours’ tuition at a college a couple of hours away and even though I was told I would never make it, I packed up and went. My first roommate’s boyfriend was stalking her and would break in in the middle of the night. I thought I had escaped, but I just landed back in an unsafe environment. After that semester I changed roommates and things got a bit better. I still didn’t feel safe, but I could justify that I was. I was constantly suicidal and I still battle those feelings today, just not as often.

 

“While I was in college I met a family that kind of adopted me. They wanted me around. They invited me to their house over and over. I had no idea what a family looked like – what a family was supposed to be. It was the first time in my life I felt accepted.”

 

They loved me in spite of my anger and suicidal thoughts and addictions. They didn’t try to change me, they just loved me. They did tell me about counseling and helped me find my first counselor. At that point I had already been on antidepressants for several years. My first counselor decided I didn’t need help – that I had it all together. I tried a different place and while they realized I needed help, my counselor didn’t show up for my appointments pretty often so I quit going. I talked about my symptoms to my doctors and spent the next 17 years seeing different doctors and counselors. I was labeled as major depressive disorder with dysthymia, generalized anxiety disorder, psychosis, dissociative disorder / dissociative fugue, and a host of personality disorders including borderline personality disorder. None of my doctors or psychiatrists ever did a complete history on me. None of them asked me questions about my past – just how I was doing currently. In 2010 I was hospitalized 3 times in 6 months. I was in a middle management position at work and the stress and feelings of inadequacy finally triggered me to the point that I was catatonic. I still had no friends and no family support. My doctor had her nurse take me to the ER and get me admitted. I would come out of the hospital with more diagnoses and on so much medication I couldn’t function and then I would go back to work unable to perform the way I had before.

The last time my company put me on administrative leave and told me I couldn’t come back to work until my doctor said I could. My doctor released me to go back to work 3 months later with the stipulation that I could not go back to work there so I had to quit my job. When I quit my job I lost my insurance and couldn’t afford my meds so I went off them cold turkey. It was horrible. I thought I was going to die before I made it through the withdrawals. After 4-5 months, I finally found another job only to be fired 6 months later due to behavioral problems. I had begun to see a different psychologist, but because of all my diagnoses she treated me as a child instead of a 35-year-old woman. Once again I lost my insurance, but could still afford my meds because they were all generics and my psychiatrist supplied the one that wasn’t generic through samples. This time it took 10 months for me to find a new job. I had been black balled in my career due to my behavioral problems on the last two jobs. I finally found a place that would take a chance on me and I still work there. It is a low paying job for my career field, but I have a job and insurance.

I finally got fed up with my psychiatrist treating me like a child and not listening to me so I searched for a new one. The one I finally decided to try actually did a history on me during my first appointment. I walked into her office with about 13 diagnoses and came out with 3. Major depressive disorder, generalized anxiety, and “complex” PTSD. I felt like a million pounds had been lifted from my shoulders. The course of my life finally made sense. My lack of being able to trust people, my lack of friendships, the “moodiness” that is really reactions to triggers that I know and some that I am continuing to figure out. Why I always felt different, like I didn’t fit in, why I still feel that way today. We changed my meds and realized the adult levels of medications are too strong for me – often resulting in serotonin syndrome, excessive sleepiness, liver damage, and more. My current psychiatrist works with a child psychiatrist in her group to get me on meds at a level that I can tolerate. This has made a difference, although I still stay in the severe depression category nearly 100% of the time. The frequency of self-injury and suicidal thoughts have decreased dramatically. The amount and severity of my panic attacks has decreased for the most part although I still have times that I can’t go to a store or public place alone.

There was one point about 2 years ago when I was triggered constantly at work and I ended up in intensive outpatient therapy and then inpatient and back into intensive outpatient, but I was able to go back to work. I know I have a therapist that is experienced in treating PTSD in both children and adults. She is able to meet me where I am emotionally – which is around 6-8 years old – and she doesn’t try to force me to “be an adult”. She is okay with whatever way I can figure out how to tell her what I am feeling and if I can’t put words or pictures on it she is okay with that too.

 

“I am finally making progress at the age of 41. I am finally being able to change some behaviors and figure out why I react the way I do and work to change it. I finally feel like there is hope for me to have a life that has purpose.”

 

I finally understand that there isn’t anything inherently wrong with me. I finally realized and have been able to acknowledge that what I thought was normal was some of the worst abuse my psychiatrist and therapist have dealt with. They both tell me that because of the severity of the neglect and abuse I may never be fully rid of the triggers and mood changes, but that with time, hard work and taking care of myself I should be able to come to a place that I am no longer haunted by the first 18 years of my life. I’ve never had hope before, it is a foreign feeling, but one I am getting used to. In the last few months I have finally been able to talk about my miscarriage, to separate that life from the events that surrounded it. I have been able to memorialize that life and begin to grieve the child that I lost 27 years ago. The child I always said I never wanted because it was just too painful to say anything else. The only child I will ever have. Today is my 41st birthday. No one has wished me a happy birthday, but I didn’t expect anyone to since I still live a pretty isolated life. Yesterday I realized that the only thing I wanted for my birthday was to say goodbye to my child in some way. Today I had the courage to purchase 27 daisies which I took to the local lake (we don’t have any rivers near me) and I dropped the flower heads one by one into the water and watched them float away. In so doing I said goodbye to the part of my past that says my child was not wanted and embraced the fact that I was a scared child myself who didn’t know what to do or say. It was very hard to do, but I did it. I said some words over the daisies as they floated away on the water and I could see the hard and painful part of that story going away. As I left that place I was a bit more free, a little less burdened by the secret that I have carried for 27 years. Moments like this are priceless for me. All the pain of therapy is worth it when there is a breakthrough like this. I took pictures and recorded what I said so that I can remember the positive, so I can remember the service that I finally had, that my child finally received. This gives me hope. This is why I continue to fight for my life, for my future….

 

“The advice I would give someone in my situation is to not give up just because your therapist / counselor / doctor / psychiatrist has given up on you. If you feel like they have written you off as someone who will never get better fire them and find someone new…. over and over if you have to until you find the one who does believe in you.”

 

Be open to trying new things, unconventional things – eastern medicine, art therapy, or other types of therapy you might not know about. Even if something hasn’t worked for you before with another therapist, be open to trying again with a different one.  Even if you have given up on ever being better, try to find the courage to fight one more time, and then one more time. You are worth it, worth every ounce of courage and strength you can find. Take comfort in the things you can – art, nature, pets, friends, family, a stuffed animal or a weighted blanket. Keep looking for things that work for you no matter what anyone else says. Let people care for you especially when it’s hard. Learning to trust is hard, learning to have healthy relationships is hard, learning to love yourself is hard…. they are all so worth it though! Be kind to yourself, learn to accept where you are, but not to settle for less than you can be. The next step may be the one that takes you on the journey to wholeness, to freedom from your past, to freedom to live in the now and look to the future.

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“There were so many people asking the things that I was too afraid to ask”

Posted May 15th, 2017 by

It’s the 10-year anniversary of the MS community, and we’re sharing a story from one of our members, Jackie (OldSalt). Jackie was diagnosed with relapsing-remitting multiple sclerosis (RRMS) in 2007 and more recently, her condition transitioned to secondary progressive MS (SPMS). She found PatientsLikeMe in 2008 and believes that being part of the site over the last nine years has made a difference in her life, and the course of her illness.

A jarring diagnosis

“Some may say I was “lucky” that I had little trouble being diagnosed compared to many who spend years chasing answers to understand why they are feeling as they do. It can be frustrating wondering what’s happening to your body.”

The summer before her diagnosis, Jackie found herself suddenly unable to walk or move her limbs for nearly two full weeks. After diagnosing her with an unspecified virus, her physician prescribed an antibiotic over the phone. The antibiotic didn’t help.

A month later, after experiencing terrible pain in her left eye, Jackie went to an ophthalmologist. He believed she had MS and contacted her physician to request an immediate consult with a Neurologist for a Lumbar Puncture and an MRI.

“This all took place within a 48-hour period and I had my diagnosis immediately.”

 

Coming to terms with her new normal 

“To say I was stunned would be a gross understatement. My only prior knowledge of this illness had been of my maternal uncle and his hard-fought battle with MS, which he lost while bed-ridden to pneumonia 25 years earlier. I was terrified.”

Jackie, a mother of three children over 15, was grateful that she could rely on her family for support, but still worried about her future and the future of her family.  As an active woman who enjoyed downhill skiing, boating, working in the yard or just tending to her family business, she worried.

“What would this mean for me?  For us as a couple?  Would I be in a wheelchair soon or bedridden young as my uncle had been?  I was only 44 years old and my husband and I had so many plans…so much life ahead of us. What would life be like now?”

Treatment challenges

Following the advice of her neurologist, Jackie began having monthly IV infusions of steroids After 15 to 18 infusions, Jackie thinks that, though an infusion of steroids may help hasten the duration of a relapse, she came out of it with additional bone damage.

“My bones and teeth have been weakened to a point that I am best described as “Humpty-Dumpty” if I were to ever foolishly attempt to ski and fall or merely slip on the ice in my own driveway.”

Jackie began taking a disease modifying drug (DMD) called Rebif that caused flu-like symptoms that severely impacted her quality of life. One week after starting the drug, she experienced full anaphylaxis.  Jackie’s daughter found her unable to speak or breathe properly, requiring an emergency trip to the hospital.

She also tried Copaxone. Since she was still relapsing and paying out-of-pocket, (Jackie lost her insurance because she has a pre-existing condition) the price of $3,500 monthly just didn’t seem prudent.

Finding hope in the forum

“PatientsLikeMe is invaluable to me. I’ve learned everything of value about how to come to terms with (early on), live with and manage my illness through the people I have met here throughout the years. I’ve made some wonderful and lasting friendships and met many in person. I continue to communicate with several on a regular basis both on and off the forum.”

With an overwhelming diagnosis, difficult symptoms and frustrating treatment experiences, Jackie wanted to connect with others who were experiencing the same things.  For Jackie, finding PatientsLikeMe changed everything about her life and how she views herself and her illness.

“There were so many people asking the things that I was too afraid to ask and the number of replies were staggering. I felt like I had finally found a place that I could really belong.”

Jackie found more than social support in the forum. After seeing a photo of a strange red line moving from Jackie’s foot to her calf, and thinking it might be MRSA, lady_express_44 (whom Jackie considers to be the guru of all things medical) encouraged her to go to the hospital immediately. It was MRSA and Jackie’s doctors told her she could have lost her lower leg.

Taking back control

 Being diagnosed with a chronic and progressive illness is perhaps one of the most daunting things that can happen to a person. It’s frightening and for good reason. Jackie’s advice?

“Don’t waste time worrying about things unknown and make your best effort to live for today. Take charge of your illness and make the very best possible decisions for your health. We must advocate for ourselves and our future.”

Jackie also advocates for connecting for connecting with others, especially on a web site such as PatientsLikeMe where there are so many wonderful and knowledgeable people to share their experience and expertise.

“It has made a monumental difference in my life and I believe, the course of my illness. I don’t view my MS as an end to anything but rather as something I simply have and something I’m managing to live with. It truly isn’t who I am, but rather just one more aspect of my being.”

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Meeting PF patients where they are

Posted May 8th, 2017 by

Say hello to John (John_R), a father, grandfather and idiopathic pulmonary fibrosis (IPF) survivor. Sound familiar? Last year he shared his story about life after a double lung transplant and the importance of considering a lung transplant early. This year, John started a Facebook group to live-stream pulmonary fibrosis (PF) support group meetings and conferences.

“I am very passionate about honoring the precious gift provided by my donor family and in living a life worthy of their generosity.”

John received a bilateral lung transplant on January 1st, 2015, and believes he’s alive today thanks to his donor family and care team at UT Southwestern in Dallas. Now, he’s committed to raising awareness for the needs of the pulmonary fibrosis community.

Life after transplant

John’s life before transplant included the use of supplemental oxygen 24 hours a day, and what he calls, “an eminent expiration date” in his near future. He couldn’t visit family in Colorado or the higher elevations of New Mexico due to the altitude, and every breath was a struggle.

“The biggest thing about life after lung transplant is that I no longer have a firm expiration date, I can have hope. I can go to Colorado and attend medical conferences. I can help others by sharing my experiences and the knowledge I’ve gained. I have also learned to cherish the moments that make living wonderful.  A moment of kindness, shared empathy or even a smile mean so much to me now. The rest doesn’t really matter. Life is good.”

Fighting isolation with the help of Facebook

According to John, many people diagnosed with IPF have never even heard of the disease prior to hearing of it from their doctor. Then they learn that their disease has no cure and only a couple of treatments that slow the progress of fibrosis for some. Online research about IPF offers little comfort either. John’s experience motivated him to start an online support group using Facebook Live.

 

“IPF can be a very isolating disease. Your friends and family have never heard of it and you are reminded of your mortality with every breath. In my case, each trip to the pulmonologist was just proof that my disease was progressing. A support group can help with the feelings of isolation and loneliness, plus provide valuable information and hope for the future.”

 

After trying a paid platform to share their meetings, but finding it too difficult for some participants to access, John thought Facebook Live seemed a good option. Once someone has joined the group they get a notification when the support group goes live.

“They are then just one click away from being able to join the meeting and participate with folks who share the same journey.”

Though the Facebook group is new and participation is growing, John hopes that it will help people understand that they are not alone, and that he can provide some valuable information about IPF and lung transplants.

Managing with PatientsLikeMe

“I use PatientsLikeMe to track my data and as a platform to share with others in our community. I can easily view my lung function both before and after my transplant, track my weight loss and ensure I am maintaining a healthy weight, and keep an eye on A1C, cholesterol, and all my medications in one place. PatientsLikeMe has also given me the opportunity to participate in studies and share my voice with the healthcare community.
 

“The pulmonary fibrosis community on PatientsLikeMe was my anchor when I was coming to terms with my IPF diagnosis, and continues support now that I’ve had a transplant.”

 

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Oceans of Hope: An interview with PatientsLikeMe member Beth

Posted March 1st, 2016 by

Beth (sailebeb) has been living with MS since 2010, but it hasn’t stopped her from leading an active lifestyle. In the spring of 2015, she joined a crew of MS patients on a sailing trip from Tahiti to American Samoa. The journey was organized by the Sailing Sclerosis project, Oceans of Hope, to change perceptions that people with chronic diseases like MS are “trapped by their condition.”

Here, Beth describes her experience onboard and what she learned about herself along the way: “Oceans of Hope is showing me I can still take chances.”

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

I like to garden, both flowers and vegetables. Started glass fusing after I got MS. Love to travel. We have had many different types of campers and are also trying to figure out what will be the next best one (for the least money of course). Always have four or five projects, and most of them are 90% done. I also have a 14-year-old son, and that is a hobby and a passion all by itself.

What went through your mind when you were diagnosed with MS in 2010?

Denial. I think that is common. I thought I’d take some medicine for the rest of my life but other than that things would go on just like normal.

Actually I was lucky for a couple of reasons. I have a very large number of lesions on my brain and spine but for the most part they had lousy aim and I didn’t know I had MS until late in life (late 40s).

How did you find out about Sailing Sclerosis: Oceans for Hope?

I was reading the multiple sclerosis forum on PatientsLikeMe and a poster mentioned the Sailing Sclerosis project, the boat Oceans of Hope and the route it was currently taking. That route almost exactly matched the one I had taken in my 20s with my brother on a 38’ sailboat, Sirena, so that piqued my interest.

What was your experience like with Oceans for Hope? Where did you go, and what was it like to sail with other people with MS? 

I roomed with another MS crew for a few nights in Papeete, Tahiti before boarding the boat. We had all made contact via the Internet well before the trip, and had arranged to meet, rent a car and tour the island together. It was a good way for the six of us (three Americans; three Danes) to make first contact.

We were also able to met two people from the MS4 crew (people leaving the boat), and have dinner with them. They had done a longer Pacific crossing so it was very interesting! Gave us some good pointers and told us what berths to avoid. Unfortunately, I got one of those berths!

After a few days of provisioning and safety lectures, we took an overnight sail to the island of Moorea and anchored out for a few days. The professional crew introduced the MS crew to the finer points of “jumping off a moving boom.” I didn’t partake! (I’d have jumped off the boom…it was getting UP ON the boom that was the problem!)

Then a multi-day sail to Bora Bora which is as beautiful as everyone says. The locals were even more lovely and the folks at The Black Pearl Farm, where we were anchored, took amazing care of us. We even dove for pearls! The last leg was an 11-day leg to Pago Pago in American Samoa.

The great thing of traveling with other folk that have MS and with people that are now so used to being with people with MS was that the MS wasn’t hidden, wasn’t shameful…it really didn’t matter. People talked about it at times, comparing experiences, drugs, etc. but not dwelling on it to an unhealthy extent.

The best thing about this trip was easily the people I met and the camaraderie.

What’s one thing you learned about yourself on your journey from Tahiti to Samoa has spread?

The second thought that went through my mind after I got done denying my MS was, “Boy, I sure am glad I traveled and took those chances when I was younger, because I’m not going to be able to do anything else, now am I?”

Well I am still glad I took those chances back then, but Oceans of Hope is showing me I can still can take chances like that now.

What has your experience been with PatientsLikeMe? What keeps you coming back to the site?

I found out about sailing sclerosis on the site, for that I will always be grateful. I come back when I need to research a topic, ask a question or just find out what some fellow MSers are thinking.

 

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“We are the ones that know what is required to give us the care we deserve” — Member Ann shares her story for Rare Disease Day

Posted February 29th, 2016 by

 February 29 only comes around every four years – and this year, it’s extra special: Today marks the 9th annual Rare Disease Day. In the United States, a disease is considered rare if it affects less than 200,000 people at any given time.

This year’s theme is all about elevating the patient voice, so we caught up with member Ann (annpkerrigan) to learn more about what it’s like to live with alkaptonuria (AKU), a rare disease that affects 159 PatientsLikeMe members. Here’s what she had to say…

How would you describe AKU to someone who has never heard of it?

I suffer from AKU, which is a rare genetic disease with no cure or treatment but not fatal. This is what I was told six years ago when diagnosed after many years attempting to identify my condition. AKU is a metabolic disease, which causes severe early-onset osteoarthritis. It can be a painful and degenerative disease.

Over the years, I’ve learned to adapt and make changes to my home. I live alone and it’s crucial I can manage everything. Prior to diagnosis my knees were very painful so I moved to a ground floor apartment in Bristol to be closer to work and because using stairs became impossible. My GP referred an occupational therapist to assess my home and she provided equipment to help, like a sock aid and a long-handled comb. She also authorized the council to install a wet room, which provided safety and independence. When my shoulders deteriorated it became painful to change gears when driving so I was able to get an automatic car through the Motability scheme in the UK.

How has your life changed since your diagnosis?

A major problem was washing my hair because I was unable to hold my arms up for any length of time, so I’ve been going to a hairdresser weekly for years. I’ve also lost three inches in height because my spine’s compressed. I’m only five feet now, so I’ve had shelves lowered in my flat and I’m currently saving to adapt my kitchen.

As for work and social life, everything’s changed. I haven’t worked since diagnosis, which coincided with redundancy because of my disease escalating. I contacted The AKU Society in February 2010 and was invited for three days to undergo tests to aid research and to help me. The trip was wonderful because I met experts who understood my disease and I no longer felt isolated. The tests revealed a lesion on my chest and I was referred for a CT scan, which identified a 9cm tumor tucked underneath my breast bone – beside my lungs and heart – which had to be removed. I wasn’t symptomatic and it was thanks to Liverpool this was identified!

The main problem I face is financial. Having left work at 50 I’ve lost a good income and standard of living. I’ve also spent my redundancy on emergencies like a new washing machine, refrigerator and to supplement my income, and have lost 15 years of pension contributions. However, the worst part is knowing there’s no cure, and trying to come to terms with it.

However, the AKU Society’s been brilliant, as has peer support, and I’ve been surgery-free for more than two years. But moving forward, I’m having a right hip replacement in March and carpal tunnel surgery in May. My social life is very different now because there are activities I can’t participate in, and although I’ve always loved to travel this is also difficult now. Essentially, my life has completely changed and while I try to remain positive and independent I sometimes suffer from depression.

What changes do you think need to happen in society to raise awareness about rare diseases like AKU?

AKU is largely an invisible disability – patients look perfectly normal on the outside. I have a blue badge for parking because I need the extra space to get my legs out of the car, and because I have a problem walking, but I’ve been shouted at for parking in a disabled space because I don’t fit the stereotype. So I’d like to see a campaign to highlight the difficulties of invisible disabilities. The government hasn’t helped either because they’ve targeted vulnerable groups in society and labeled the disabled as fraudsters. Families of AKU patients need support, too, and could help each other if a group was established or a forum available.

How can healthcare become more compassionate towards patients with rare diseases?

I’d like to see every newly diagnosed patient given counseling and have an AKU buddy for peer support.

Rare diseases like AKU are known as orphan diseases because they affect a small percentage of the population. As a result, they lack funding and largely remain unknown to government, medical practitioners and the general public. I would love to see a campaign to educate government, medical practitioners and the general public about invisible disabilities and rare diseases. I’ve been involved in teaching third year medical students for the last three years so that they’ll know how to identity AKU earlier and to think outside the box!  Medical practitioners need to listen to their patients and if a patient reports something that doesn’t easily fit a diagnosis, this could be the red flag pointing to a rare condition.

I think patients will start to receive better care once doctors listen and respond quickly, which will come about through teaching, improved resources, funding and changing the mind sets of the public and government. I’d also like to see more partnerships between patients with rare diseases, medical practitioners and government because we are the ones that know what is required to give us the care we deserve. Therefore, we need to educate and inform all the key stakeholders so that they too will become advocates.

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1http://www.rarediseaseday.org/article/what-is-a-rare-disease


“I had no idea that my thyroid controls so much” — PatientsLikeMe member Barbara shares her experience for Thyroid Awareness Month

Posted January 29th, 2016 by

January is Thyroid Awareness Month. So, how much do you know about the small, butterfly-shaped gland that influences the way your heart, brain, liver, kidneys and skin function? To help spread #thyroidawareness, we asked member Barbara to tell us about living with thyroid cancer and hypothyroidism, a condition that affects over 6,000 PatientsLikeMe members.

Barbara shares how her thyroid issues have taken an emotional toll on her, as well as some advice on being your own advocate: “Fight for your right to feel normal again.”

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

I really love photography and a new passion is gemstones. I have been taking photos since I was a kid.  I love landscapes and different and interesting people. I still have several film cameras but I love the freedom of digital. I enjoy video and web design as well. I have gotten the opportunity to study gemstones and it has opened up a big new world. I am currently studying how to identify gemstones. It is like being a detective.  There are so many different types. Learning their origins has been fascinating. I also love watching Kung Fu movies with my husband.

When you were diagnosed, what went through your mind?

Barbara took this picture on her trip to Holland.

My diagnosis was a little odd.

I went in for a regular Pap appointment and the doctor felt my glands and made an offhand remark, “Oh, you’ve had that checked,” and then continued on. I sat there stunned. I did not like this doctor so I didn’t say anything about it. When I got home I immediately called and scheduled a physical. It was during the physical that they examined the lump on my thyroid. They sent me to an endocrinologist who did a biopsy after joking that he could do it blindfolded. I did not like that doctor either. The results were abnormal but inconclusive. I was told that I needed surgery and that there was only a 20% chance it was cancer and a 20% chance that I would need thyroid medication.

I thought that I might die. I know that was an overreaction but I was scared.

I didn’t get a real diagnosis until after the surgery.  It was cancer, and within two weeks I knew I needed medication even though I still have half my thyroid.

How has your life changed after having thyroid surgery?  

I have become intimately familiar with exhaustion. I was told by doctors and friends and co-workers that managing my thyroid would be no big deal. Only one person gave me a real glimpse of what was to come. That was a professor that had a friend with extreme exhaustion due to his thyroid issues.

I have been tired, exhausted, angry, unreasonable, irrational and a nightmare to live with. The worst was the first year but it took many years before I started to feel close to normal again. The surgery was nothing compared to my symptoms afterwards especially since I didn’t have any to start with. They have no idea why I got cancer. There is some in my family and I have been told that there can be a link with melanoma, which does run in the family. That is something I am still learning about.

I can empathize much more with people dealing with mental illness because looking back it seems like I was crazy. I know I was not in my right mind.

Barbara took this picture on a trip to Holland.

I have learned to be very sensitive to my emotions.  If I realize that I am not feeling “right,” then I can take precautions. If it is a really bad day I may call in sick to work because it can affect my job performance. I seem to be more prone to migraines when I am off. It can be really hard to tell if I am hypo- or hyper- from my medication. The symptoms can overlap or be very similar. I have charted all of my lab results and read a lot of different research so that I can be my own best advocate. Learning more and paying close attention along with an alarm set for my medication helps a lot. I never ever miss a dose. Depending on my blood work I may adjust my dose by half a pill a week or every other week. I have found that I am very sensitive to dosages. I miss Levothroid — it worked better than the Levothroxine I take now.

In honor of Thyroid Awareness Month, what’s one thing you think people should know about living with and recovering from thyroid cancer?

There are many different ways each person may be affected. If they push you away, please be patient. I did not realize how horrible I was until I came out of the fog. I didn’t feel that sick at the time but looking back, wow. There is help; once I switched doctors the new one listened a lot closer to what I told him and he believed me. Fight for your right to feel normal again. I had no idea that my thyroid controls so much.

In your profile, you mention your doctor: “He doesn’t seem to really understand what I am feeling because by now I should be ‘fine.’” How have you dealt with this? Do you have any advice for someone in a similar situation?

Doctors have been frustrating at times. I have tried to restate things in a different way and if that didn’t work I would request a different doctor. I have also seen a chiropractor that does muscle testing and she helped me a lot even though it seemed an odd way to see what could help. We found that a vitamin and mineral supplements helps me a lot.  We went through a few other supplements to get here but I felt better with each step and she was excited to see me improve. She started with a supplement that helped my liver. I would think that everyone may be a little different. She said that I improved about twice as fast as she thought I would so we were both very happy with the results. Now I have the energy to go out and take some photos.

What has it been like connecting with other PatientsLikeMe members with your condition?

It has been very helpful to see what other people try and what they feel works for them.  It has given me hope. I love the thought of all of our data helping others so they will have a faster, easier time with whatever their ailment is. If I don’t feel well I can see that someone else is doing much worse so I better be happy for what I do have.

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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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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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“Don’t go it alone” – IPF member Christine shares about her health journey

Posted April 24th, 2015 by

Christine_Williams was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2009, and ever since, she’s been managing a “rollercoaster ride that’s terrifying and not fun.” But she’s connected with your community on PatientsLikeMe for inspiration and was even referred to a new medical center to be evaluated for a lung transplant by her “rehabilitation buddies.” Below, read what Christine shared about her diagnosis, progression and thoughts on living with IPF.

Can you share a bit about your diagnosis experience? We’ve heard from many members that finding an official diagnosis isn’t always easy. What that true for you, too? 

Mostly no. In March 2009, I contracted pneumonia back to back within 8 weeks. It was around the time when the swine flu became a big deal, and I had visited Cancun, Mexico that year. I wasn’t necessarily in great health but fairly healthy. I had always attributed my shortness of breath to me being overweight. Because of the pneumonia, a CT scan was ordered. Then a bronchoscopy and finally a video assisted lung biopsy. I was diagnosed however right after the bronchoscopy. I started exhibiting shortness of breath symptoms in 2001. Even went through a series of PFTs at the time but was given an inhaler and told to lose weight. Ironically I didn’t start to suffer from REAL shortness of breath until after the diagnosis. Perhaps I had an exacerbation when sick with pneumonia. 

How has your IPF progressed over the past five years?

To tell you the truth, I really don’t know. I figured the doctor would tell me if there was an exacerbation or not. No news is good news? I do know that my disease had stabilized within 2 years because I was “kicked out” of the lung transplant program so to speak. I no longer needed to see the transplant team doctors however was recommended to still see my pulmonologist which I did. It was only the diagnosis of pulmonary hypertension (in October 2013) that the option of lung transplant is back on the table. I know I need to know this information and will ask my pulmonologist how my PF has progressed when I see her this month. I was only using oxygen at night until March 2013. Then I started using it full time. My liters per minute (LPM) has increased since then too (from 2-4 at rest and 4-6/10 on exertion).

Take us through a typical day in your life – how are you managing your IPF?

I officially retired from my job December 2014. I have up days and down days. Every morning I open my eyes, I thank God! I attend pulmonary rehabilitation (PR) twice a week (Tuesdays and Thursdays). I used to attend a yoga class given by the PR until it was cancelled. I hope they bring it back soon because it brings me much needed peace and helps me breath better. I try to be as “normal” as possible. I cook, clean, spend time with family and friends. I also help take care of my 5-year old twin grandsons for about 3 hours every day after school. I run errands; post office, dry cleaners, etc. Sometimes I go to the doctor by myself but most times I ask for someone to go with me; just to have another set of eyes and ears. I rely heavily on my support system both in person and on-line.

Since it looks like a lung transplant might be back on the table for you, can you tell us a little about what the experience has been like?

It is a very exhausting experience. I’m being evaluated by three different centers (University of Pittsburgh Medical Center, Temple University and New York Columbia Presbyterian). Every other week, I’m changing my mind. Traveling back and forth, making appointments, getting all the tests done can be extremely stressful. I was initially with the University of Pennsylvania lung transplant center. I was rejected by them because of esophageal issues. I was so defeated that I went home and cried and said I can’t do this anymore. But I guess God has something else in store for me. I was referred to UPMC and my cousin had a double lung transplant at Temple. One of my “rehabilitation buddies” went to NYCP and referred them to me. I am a part of the NYCP program and UPMC and Temple are in the process of testing me. I know that lung transplant is not a cure but an option. It’s trading one set of challenges for another. It is good to see some people that I have met on-line over the years thrive with transplant.

How have others in the IPF community on PatientsLikeMe helped support your journey?

Words cannot express how I feel about the IPF community! As I mentioned earlier, they are an important part of my inspiration. Their honesty, love, courage and encouragement help keep me going when I think I can’t go on anymore. I pray for our individual and collective healing on a daily basis. 

You post a bunch to the “Today’s Thought” thread in the forum – what is one thought you’d share with someone who has recently been diagnosed with IPF?

DON’T GO IT ALONE!!!! Please reach out to family and friends. Stay connected even if it’s online. Research face-to-face groups on the Pulmonary Fibrosis Foundation website. Talk to a therapist, priest, rabbi, etc. This can be a dark, lonely and scary experience; a rollercoaster ride that’s terrifying and not fun. Remember that you are not alone!!! And there is a whole community of us just waiting with open arms.

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PatientsLikeMe member TMurph58 shares about his advocacy efforts and journey with ALS

Posted April 20th, 2015 by

TMurph58 is a longtime PatientsLikeMe member who is living with ALS. You may remember him from his 2012 interview, when he talked about the “Treat Us Now” movement and his experiences with ALS. We recently caught up with Tom, and he shared about his extensive advocacy efforts over the past few years, including his recent presentation on patient-focused drug development with Sally Okun, PatientsLikeMe’s Vice President of Advocacy, Policy and Patient Safety. Catch up on his journey below.

Hi Tom! Can you share a little about your early symptoms and diagnosis experience?

I think I was very lucky to have a knowledgeable general practitioner – my actual diagnosis only took three months to complete even though I had to see three separate neurologists. My early symptoms started in my right hand with weakness and the atrophy of the thumb muscle – I thought it was carpal tunnel syndrome.

How has your ALS progressed over the past few years?

Thankfully I have been in the category of a slow progressor:

The ALSFRS-R measures activities of daily living (ADL) and global function for patients with Amyotrophic Lateral Sclerosis (ALS). The ALSFRS-R provides a physicians-generated estimate of patient’s degree of functional impairment, which can be evaluated serially to objectively assess any response to treatment or progression of disease.

Description:

  • 12-question scale with 5 possible responses each (0-indicates unable to 4-indicates normal ability)
  • Individual item scores are added to produce a reported score of between 0 = worst and 48 = best

What sort of advocacy efforts have you been involved in since your diagnosis?

  • PatientsLikeMe (PLM) Member since January 2011.
  • Active with the ALS Association (raised over $80,000 to date) – my most current activity.
  • On 8/2/2011, FM 106.7 The Fan (Sports Junkies) hosted an ALS Awareness Day Interview.
  • March 2012: Featured Interview on PatientsLikeMe (PLM) –Meet ALS “Treat Us Now” Steering Committee Member Tom Murphy.
  • April 24-25 2012 Visit to Capitol Hill with Former Neuraltus CEO (Andrew Gengos) – Summary: I think Andrew Gengos (CEO Neuraltus) and I made a good “team” – Both Industry and Patients “partnering” with a consistent message related to Expanded Access and Accelerated Approval for Rare and Life Threatening diseases such as ALS.
  • Raised over $30,000 for a collaboration between ALS Treat Us Now and the ALS Therapy Development Institute (ALSTDI) and rode the last 15 miles of the ALSTDI Tri-State Trek in July 2012.
  • Presentation made to the FDA CDER on 8/24/2012.

You’re a 3-star data donor on PatientsLikeMe – what do you find helpful about tracking your health on the site?

Because of this site, I think I have the most complete documentation of my disease progression in treatments than anyone in the health industry. It is a great tool and has been unbelievably helpful to me over the last four years. 

Finally, congratulations on your 33-year anniversary! As a father and husband, what’s one thing you’d like to share with the community about ALS and family relationships?

At the end of the day, given all the challenges those of us with ALS face – nothing is more important than your family relationships and the love you share.

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“ALS is not for sissies.” – PatientsLikeMe member SuperScout shares about her journey with ALS

Posted March 30th, 2015 by

That’s what SuperScout likes to tell people when explaining her personal motto. She was diagnosed in 2009, and in a recent interview, she explained how she takes her life one day, and sometimes one hour, at a time. In her interview, she broke down what goes on during a typical visit to her ALS clinic, and shared how technology has been simultaneously frustrating and extremely helpful. Learn about her journey below.

When did you first experience symptoms of ALS?

In August 2008, I was attending a Girl Scout event. As we recited the Promise, I noticed my fingers weren’t making the sign correctly. Over the next few months, I began to lose the fine motor skills in my right hand. Writing was hard, & I started using my left hand for most things. I thought I had some form of carpal tunnel. I had NO pain, so I wasn’t concerned. In December 2008, I went to my family doctor for my annual check-up. I told him my problems & he sent me for an electroencephalogram (EEG). That began the series of tests that eventually led to my diagnosis in April 2009.

How did you feel after being officially diagnosed? And what was the first thing that went through your mind?

I don’t think I will ever forget that day. I suspected something unusual was going to happen because the technician at my second EEG commented that the neurologist must find my case interesting because normally, it’s difficult to get an appointment with him. He entered the exam room, sat down, and said, “I have bad news for you. You have Lou Gehrig’s Disease.” I was stunned, and asked if it would affect my longevity. He said yes, but couldn’t tell me how much. He asked if I had any questions, but I didn’t because I didn’t know much about it. Sure, I had heard of it, but didn’t know what it would do to me. I went home, and looked on the Internet for information on ALS. It was scary. The first thing through my mind was how it would change my life and that of my family. I was used to doing for others, now they would need to do for me.

You tell people “ALS is not for sissies.” Can you elaborate on that?

A sissy is defined as someone who is timid or cowardly. No one who has ALS can fit that definition. We all know it will shorten our life, and rob us of many functions we once took for granted. I really like the PSA Angela Lansbury did for ALS in 2008. She’s sitting on a stool, and a gun is fired. As the bullet races toward her, she describes what ALS does to the body, and ends by saying “There’s nothing you can do to stop it.” She asks for donations for the ALS Association (ALSA) stating that with this help those with ALS can do this: She rises and avoids the oncoming bullet. We all see the bullet, yet can’t do anything to stop it. Unlike other serious diseases, there are NO options for a treatment that will cure this disease that’s been described as horrific. However, every day we People with ALS (PALS) are fighting the daily battle to stay positive. Sometimes, it’s easy, sometimes, it’s hard. You take it one day at a time, or even just one hour at a time. That makes us BRAVE, and not sissies.

Take us through a typical visit to your ALS clinic – what’s the experience like?

Every 3 months, I visit the ALS clinic at Penn State Hershey Medical Center. Once my weight is checked, I’m taken to an exam room, then the team of specialists each stop in to see me. In addition to the neurologist, I see a respiratory therapist, nurse, ALS representative, MDA representative, speech therapist, dietician, occupational therapist, physical therapist, social worker, & a pastoral care minister. They each make recommendations to help me have the best quality of life with ALS as possible. My family members are asked if they have any needs. Each room has a sign – “Have we answered all your questions?” About 1 week after my visit, I receive in the mail a summary of my visit with their recommendations. Prior to the visit, I also complete a Quality of Life survey, similar to the one on this website. Although lengthy (around 3 1/2 hours), I enjoy my visits because each person makes me feel important and they truly care about me.

How has technology helped you with your communication?

When I began using my Eyegaze Edge, I found it frustrating, but gradually got better at not moving my head and was able to be successful. Now, it is my sole means of communication. Before my caregiver arrives in the morning, I type out for her what I want for my meals, what channels I want to watch on TV, and any special information. My son says I sound like Charlie Brown’s teacher when I talk, so using my device is a necessity if I want to communicate. We even take it to Sunday School, so I can participate in our class discussions. My most favorite thing to do is connect to the internet. Sending emails is easy, and I go on Facebook, play games, read, Skype, shop, and do whatever I’m in the mood for. Once, when the camera broke, I was without it for a few days and I really missed it. I wound up grunting “Yes” or “No” to questions which was frustrating. Using technology to connect to others makes me feel I still have a purpose in life, and I have something worthwhile to contribute.

Finally, what’s the most positive surprise you’ve learned while living with ALS?

The most positive surprise I’ve learned while living with ALS is that I have more people thinking about me, and supporting me with their prayers, than I expected. I learned this during the ALS Ice Bucket Challenge. I began to see videos posted on my Facebook timeline of people participating in the Challenge in my honor. It warmed my heart to see them. They featured friends, former work colleagues, and some fellow Girl Scout volunteers. Many said how I’ve inspired them with my smile. It was never my intention to be an inspiration, but just to cope with ALS the best way I knew, with my faith in God and a sense of humor. Due to the Ice Bucket Challenge, the world now knew more about ALS, and money will be used to find a treatment and cure for ALS. I feel hopeful for the first time since my diagnosis.

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“I am not alone in this” – PatientsLikeMe member Rikwood55 shares his journey with lung cancer

Posted March 23rd, 2015 by

New member (and New Zealander) Rikwood55 was diagnosed at age 58 with non-small cell lung carcinoma (stage 4), and he said he joined PatientsLikeMe in the hope of connecting with people on the same or similar lung cancer immunotherapy treatments. Rick took part in a clinical trial, and is now tolerating the immunotherapy treatment well. His scans are looking good, and he sums it up this way:

“Five rounds of Carboplatin Chemo was hard going, as it is for everyone. Now more stability has returned and with it, hope for the future.”

Read Rick’s interview below and share your own experiences.

Tell us a little bit about yourself, Rick.

I am Rick, and I was diagnosed at age 58 with NSCLC stage 4 metastasis. I am a New Zealand-born resident currently receiving immunotherapy treatment in a clinical trial every 3 weeks at Auckland Hospital. I have received 14 treatments to date. Scan results have been good and I am tolerating the treatment well. I have joined PatientsLikeMe in the hope of connecting with people on the same or similar lung cancer immunotherapy treatments. Please, no clinical specific info, which would in any way compromise study results. Let’s talk about living day to day…I think you’ll know what I mean.

You were diagnosed about 2 years ago – what went through your mind after your diagnosis?

Diagnosis day was a tough day. Mentally paralyzing. No soft landing. I dealt with it as best as I could. Fortunately my beautiful wife was there for me. 

You’re a brand-new member of PatientsLikeMe – welcome! What do you think of the community and site so far? 

Thank you for your ‘new member’ welcome to PatientsLikeMe. What I have seen so far, this site looks to me to be very impressive, I found the section on sleep very reassuring. Insomnia is a big issue for me. I see now from your research data that I am not alone in this.

On your profile, you’ve noted that one of your interests is in clinical trials. What about clinical trials makes you passionate about them?

I do not think I am passionate about clinical trials per se. However, I am very enthusiastic about the immunotherapy study treatment that I am fortunate to currently be on. It has given me hope. A sense of hopelessness was never far from my mind in the first year after diagnosis. Five rounds of carboplatin chemotherapy was hard going, as it is for everyone. Now more stability has returned and with it, hope for the future.

Finally, what is one thing you’ve learned over the past two years since your diagnosis that you’d like to share with the lung cancer community?

Maybe one small way that I can try and say thanks to the cancer researchers, biotechnicians, study administrators and clinical care staff is to show support and encouragement for the groundbreaking work they are doing. They deserve all the flag waving acknowledgment possible for giving me back hope.

To paraphrase Mel Bernstein/Harris Yulin in Scarface, (1983), “Everyday above ground is a good day.”

Cheers!

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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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