54 posts tagged “patient interview”

“Everyone needs a “Me too!” moment” – Member Shannon on exposing her truth

Posted July 17th, 2017 by

“With every part of me that becomes less than what it used to be, a different part of me usually becomes more than what it used to be. In fact, maybe that’s the point, but it doesn’t make it any less difficult.”

Shannon (Sna2164) is a wife, mother, animal lover and writer, living in southern California. She was officially diagnosed with multiple sclerosis at 27 years old, with three children under the age of four. In a recent interview, Shannon told us about her diagnosis, starting a blog and her journey to peace and contentment with MS.

Check out her story about exposing her truth and helping others who feel misunderstood.

Searching for answers

While others can go through years of suffering while waiting for a diagnosis, Shannon’s experience was comparatively quick. It started six months after her youngest daughter was born. She began having terrible pain in her right eye, combined with temporary loss of vision in that same eye anytime she went from darkness to light or vice versa. In her quest for an explanation and solution, she used eye glasses she didn’t need and took antibiotics for sinus infections she didn’t have.

A few months into trying to solve the mystery of her eye pain, she rapidly began experiencing other symptoms including numbness, tingling, and Lhermitte’s sign (a burst of pain that runs down the back, arms and legs when the neck moves). As if slowly going numb from the feet up by inches every day wasn’t enough to alert her primary care doctor that she needed a specialist, one night she got up out of bed in the middle of the night to go to the bathroom and hit the floor. She tried again, and hit the floor again. This temporary paralysis subsided within minutes, but it alarmed her primary care physician enough to insist she see a neurologist right away.

Shannon saw a neurologist for the first time in August 2004 and was officially diagnosed with multiple sclerosis (MS) in October 2004 after an MRI of her brain and cervical spine revealed multiple lesions. She was 27 with three small children and had just been diagnosed with a condition she knew nothing about.

Finding strength through words

Starting her blog, diaryofadisease in 2015 was both a terrifying and freeing decision that Shannon says was the best decision she ever made. She’d been writing about her experience living with disease over the years and wanted to find a way to share it with others.

“I asked myself if creating a blog was really something I wanted to do, would I have regrets about not doing it, simply out of fear, in twenty years? And the answer was yes, so I forced myself to do it despite my long list of reasons I felt afraid and inadequate.”

Many months later, her dream became a reality. While there were many times she wanted to give up, her son stepped in and helped complete her vision for the site.

“He also took the photo on the home page which was anything but candid. I told him I felt like I was standing still in a world that was passing me by, and since he already was quite the photographer, he knew just how to capture my feelings in this photo that speaks volumes.”

When she released her blog, even those close to her knew very little about her struggles living with disease because it was, and still is, very challenging to talk about. Despite her fears, she knew it was important to be honest about her health and experience with MS. She also felt like there wasn’t enough information online that spoke to the heart about living with disease.

“There are volumes of information about MS and disease that speak to the brain about the scientific ‘ins and outs’, but nothing on how darn hard it is to suffer the symptoms. Everyone needs validation for their feelings, everyone needs a ‘Me too!’ moment.”

Although Shannon started her “diary of a disease” as a way to cope, she hopes that it’ll help others who feel equally as lost and misunderstood in their journey of disease.

“One of the greatest rewards is that in surrendering my pride and exposing my truth, my burden is much lighter, and the people who love me in my life have a means to really understand me in a way I could never communicate verbally.”

 

Adjusting to a new normal

Shannon’s new normal with MS looks and feels very different than what she thought normal meant before. As she moves forward, she’s learning that there are many definitions of normal and that it is okay to have limitations, to live against the norm, to change the way she does things, admit her weaknesses and slow down.

Shannon’s goal is acceptance and contentment. It isn’t always easy. Since living with MS means that each day can look different, the journey to acceptance and contentment needs to happen not once, but again and again. The principle she attempts to follow daily is:

“My value is in who I am and not in what I do, because I have spent too many years drowning in the ‘do better try harder’ mindset, and true peace isn’t found there, and I think that’s what most of us long for.”

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“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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