4 posts tagged “bipolar 2”

Meet Allison from the PatientsLikeMe Team of Advisors

Posted November 20th, 2015 by

Meet Allison, one of your 2015-2016 PatientsLikeMe Team of Advisors. Allison is living with bipolar II, has been a PatientsLikeMe member since 2008 and is a passionate advocate for people living with a mental health condition. Refusing to let her condition get the best of her, she partners with her family to self-assess her moods and tracks her condition on PatientsLikeMe where she’s been able to identify trends. She also gives back to others through her advocacy work on the board of directors of the National Alliance on Mental Illness (NAMI) in Dallas, where she lives, and currently with the Dallas police, helping train officers with the Crisis Intervention Training (CIT) program. Additionally, she works with the Suicide Crisis Center of North Texas helping to implement a program called Teen Screen and has shared her story of living with mental illness to groups and organizations all over the state of Texas. She even testified to the Texas State Legislators about the importance of mental health funding.

A former teacher, Allison is going to graduate this November with a master’s degree in counseling. Sharing about her journey with bipolar II has enabled her to live a life of recovery. This has also fueled her to empower others to share their own stories.

Below, Allison talks about her journey, advocating for herself and reaching out to others.

How has your condition impacted your social or family life?

Living with bipolar/mental illness has had a huge impact on every part of my life, social, family and work. My family has had to learn (along side me) how to cope with my changing moods. My moods do not change instantly but they can change within the day, week or month. When something triggers a mood change for me, and that trigger can be unknown, my physical demeanor can change. When I show physical signs of changing, such as withdrawing and I am starting to isolate (a sign of possible depression) or when my speech picks up and I start to lose sleep (a sign of hypo-mania) my family will ask how I am feeling, without being judgmental, as a way for me to self evaluate my moods. I have lost many friendships due to my depression. When I have isolated for months at a time some of my friends have stopped coming around. Nobody calls. It seems like I have nobody in the world to turn to and that just adds to the darkness of depression. I have learned it is my responsibility to let people know what I am going through so that they can be there for me when I need them most. The hardest part of this is letting people know that I live with this thing called bipolar and I need help from time to time. It is very frightening to be vulnerable because I do not know if people will be willing to stay with me through the ebb and flows of my illness.

Recount a time when you’ve had to advocate for yourself with your provider.

There have been a few times that I have had to advocate for myself while living with bipolar/mental illness. The one time that I will never forget and took the biggest toll on my well being was dealing with my insurance company. There is a medication I take that is VERY expensive and there was not (and still not) a generic form of this medication. There is however a medication that is in the same family/class as the one I need to take. The problem is, I DID take that other, much cheaper, medication for an extended amount of time and found myself in a mixed episode (when I was hypo-manic as well as depressed at the same time) and I was close to hospitalization. My doctor wanted me to try a medication that was fairly new on the market. To my surprise it was the medicine that worked for me. I became stable and life was good for a long time. Earlier this year (2015) my insurance company wanted to put me on the older medication, due to the price of the current drug. I explained the problems and asked that they reconsider their decision. I was devastated when then informed me that I would HAVE to go back to the old medication or pay out of pocket for the newer medication. My husband and I decided to dig deep into the wallet for a month and purchase my medication while attempting to appeal the insurance companies decision. We lost the appeal so I went back to the medication they chose for me (because I could not afford the monthly cost of the newer drug). It was no surprise when I started to feel the effects of the cheaper medication and felt like I may end up in the hospital because the depression was getting too bad for me to live with. I made another appeal and this time they told me the expensive drug was out of stock but when it became available I could have it. With relief in the air I dug into my wallet, yet again, to purchase another month of the newer drug to get me started until it became available. To my dismay they told me it was STILL on back order from their distributor. I am fortunate enough to have a friend who is a pharmacist in that part of the country, so I called and asked her. She did the research and found out it was never on back-order, but there may have been a recall for a different dose many months earlier and that should NOT have effected my request. I immediately contacted my insurance company with the facts I found out through my research and without question, I had my (expensive) 90-day prescription delivered to my door the next day with signature required. There were no questions asked. It infuriated me that I had to do that much work and put my mental health / well being in jeopardy for the sake of the dollar. Not everyone can advocate as I had to do, so when I can I will step up and help those who struggle and do not see a solution to their problem. I know how that feels because there was a period of time I did not feel there was an answer to my problem until I had to be creative and advocate.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?  

Words cannot explain the importance and the role PatientLikeMe has played in my well-being while living with bipolar and mental illness. I do not even recall how I found PLM in 2008, but when I did I started my work right away. I started charting and graphing. I have to say, part of it was because it was fun to see up and down on my graphs after a few days. Then it was a challenge to get 3 stars. When I fell to 2 stars I was frantic to get my 3 stars back and then it started to really come together for me. I started to see my actual mood cycles. After a few years I started to recognize my mood cycle in March and it is a time of year my doctor and I start to become proactive ahead of time. After all of these years I cannot possibly remember when I took a medication or why I stopped taking it. Now I am getting much better at giving myself better details about each medication, which in turn helps the community, as a whole, learn more. PLM has supported me emotionally by standing by my side as I do fundraising walks in my community for mental illness and suicide prevention. PatientsLikeMe has made generous donations on my behalf, sent team shirts for us to wear and in return I have been able to spread the word about PLM and what a difference it makes to me and thousands of others. I feel honored and blessed to be on this year’s team of advisers. I want to help make a difference in the lives of others, like PLM has done for me.

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Getting to know our 2014 Team of Advisors – Dana

Posted October 3rd, 2014 by

Just last month, we announced the coming together of our first-ever, patient-only Team of Advisors – a group of 14 PatientsLikeMe members that will give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients like them. They’ve already met one another in person, and over the next 12 months, will give feedback to our own PatientsLikeMe Research Team. They’ll also be working together to develop and publish a guide that outlines standards for how researchers can meaningfully engage with patients throughout the entire research process.

So where did we find our 2014 team? We posted an open call for applications in the forums, and were blown away by the response! The team includes veterans, nurses, social workers, academics and advocates; all living with different conditions. Over the coming months, we’d like to introduce you to each and every one of them in a new blog series: Getting to know our 2014 Team of Advisors. First up, Dana.

About Dana (aka roulette67)

Dana is a poet and screenplay writer living in New Jersey. She is very active in the Mental Health and Behavior forum. She is open to discussing the ups and downs of living with bipolar II and helping others through their journey. She has been through weight loss surgery three times and is very interested in the connectivity of diet to mental health—she believes that psychiatrist’s need to be aware of the whole person, and have an understanding about diet, physical health and mental health, not just focus on medication.

Dana is passionate about fighting the stigma of mental illness, which causes people to self-medicate. She believes there needs to be more positive examples on television. Here’s a fun fact about Dana: she won the people’s choice (top voted by peers) award in the PatientsLikeMe video contest for her video, I am not alone.

Dana on being part of the Team of Advisors 

It’s really quite an honor, considering the amount of people on the site. I’ve discovered what a wonderful group the advisor’s are and have had some meaningful conversations with a few of them online. I appreciate the opportunity in helping others in anyway I can to understand what we go thru on a daily basis. By getting a glimpse into the life of someone with an illness, I feel that I am educating them and helping them understand a person they might love or know or have dealings with in their own lives. And hopefully open their eyes a bit. 

Dana’s view on patient centeredness

Like those commercials for the Cancer Institute, where there are more than one doctor or professional to treat the whole patient instead of just the symptoms of one illness. Many times when you are mentally ill, it seems your body also suffers in physical ways, your diet also becomes poor. Patient-centered to me means that the doctor should look at your diet, your physical and your mental health. Just asking if you are taking your meds is not enough. Psychiatrist seem like pill dispensers and then dismiss you from their office and therapists talk, but really have no interest in the meds. More of a team effort is needed.

Dana’s contribution to researchers at the University of Maryland

PatientsLikeMe recently invited the University of Maryland (UMD) to our Cambridge office for a three day consortium that kicked off a partnership funded by their PATIENTS program, which aims to collect patient input and feedback on all phases of research, from ideas to published results. As one of the working sessions we invited Dana to join us remotely, to discuss her journey with bipolar II and share her perspective and expertise as a patient. Here’s what she experienced:

I was a little nervous at first, hoping I was able to answer their questions and provide them with what they needed to know. The questions were pretty specific at times and I found that to be interesting. Because it showed me that they really wanted to know and understand my views. I enjoyed the experience and hope that my interview helped them in some way.

I was very honest. Explained what it is like to suddenly become bipolar when you had no reference point in your life to prepare you for the physical and mental storm it brings. I stressed how it’s a 24/7 – 365 a day battle, even when the meds are working. At least in my experience it has been. I feel this was an important point to make and that they should consider this when dealing with participants in their research.

I would tell researchers moving forward to always remember the patient is more than a test subject. That what you are researching addresses them on a daily basis and some days, the best they can do is just get out of bed. That some type of break should be considered and might even work to their advantage.

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“In my own words” – PatientsLikeMe member Eleanor writes about her journey with bipolar II: Part 3

Posted July 7th, 2014 by

Eleanor (right), her daughter Kalea (left) and granddaughter Malia.

Over the past few months, Eleanor (redblack) has been sharing about her bipolar II on the blog, and today, we’re posting the final part of her series (thank you Eleanor for being so open and taking the time to share with everyone)!

Eleanor talks about her relationship with her psychiatrist Jon and how they recently sealed “nearly four decades of struggle, pain and healing.” Read on for the final chapter, and if you missed Eleanor’s two previous entries, check them out here.

 

 

 

My Psychiatrist of Thirty-Seven Years: Jon Betwee

What can I possibly say? Jon Betwee became my psychiatrist thirty-seven years ago, a month after we moved to Maui from western New York. He retired February 1st, but not before personally placing a few of his patients with one of the very limited number of therapists here. I was fortunate to be in that group. I am seeing a female nurse practitioner, licensed to write prescriptions and well-versed in bipolar disorder. As my PatientsLikeMe friend, Kitty, said to me last week, “She’s no Jon, but she just might turn out OK yet.”

Jon is very reserved outwardly, but extremely discerning and compassionate inside. He became the best friend I’ve ever had and the rock to which I clung whenever I was drowning. Jon was available 24/7, at home as well as the office. He treated me for years for severe clinical depression. Twice during the thirty-seven years I was bedridden because of severe weight loss and inability to eat in the depths of my despair. Both times, Jon came to our home for sessions until I was strong enough to go back to his office.

I was hospitalized once in Honolulu and given – it was discovered later – a series of medically incorrect electroconvulsive therapy (ECT) treatments. Jon later sent me to Western Psychiatric Institute and Clinic in Pittsburgh, where I received excellent therapy with my individual doctor, attended classes in Cognitive Behavioral Therapy, Art Therapy, and received a thorough examination of my diagnosis, etc. I was also given ECT treatments, which I stopped. I consider ECT to be extremely inhumane.

About ten years ago Jon changed my diagnosis to bipolar II. He saw me through two suicide attempts. Frequently he communicated with experts on the mainland concerning my symptoms and medication. I was welcome to call him during the night when violent nightmares drove me to sit in the living room and ponder the value of ever leaving again, a darkness which had become my home. I seldom actually called. I would say to myself, “If it gets worse, I’ll call.” Then it would get worse and I’d say, “Well, if it gets worse than this, I’ll call.” Eventually the sun would begin to rise, and I’d breathe a sigh of relief. I had made it through another night. The important thing was not that I called, but that I knew I could call.

In my frequent cycling, it has taken years to accept his constant observations that when I am hypomanic, I think I am “cured” and ignore any and all red flags. When I am depressed, I cannot remember the healthy periods and feel it would be better for myself and my family to die. Having worked in a settlement house and been active in the Civil Rights Movement, I found a strong, liberal ally in Jon. Over the years we exchanged many books. He introduced me to Kay Redfield Jamison whose bipolar caused her to frequently change her hair color, re-arrange furniture and spend money she didn’t have on things, often for others, which seemed unbelievably desirable, rivaling “the rings of Saturn” in their beauty. Just – like – me. He gave me “Darkness Visible” by William Styron. It was like looking in a mirror. Jon studied my extended family and explained that I had come by bipolar disorder honestly through genetics. This relieved much of my guilt over an illness that frightened my children and challenged my husband.

Over the years, I have been on just about every medication that applies to depression and bipolar II. Some were ineffective; some had side effects severe enough to make me stop them. For two years my main medication has been Selegiline. Jon expressed caution about continuing it just before my therapy ended. Since then I have discontinued it with my therapist’s approval because of nightmares, weight gain and possibility of liver damage.

Two years ago, Jon gave me a detailed printed sheet for recording daily my mood levels, hours slept, and my place on a scale that went from deep depression to extreme mania. I also would write in any event that caused cycling. At each session he checked it, asking questions and pointing out how items I recorded affected my bipolar.

When he changed offices a few years ago, he gave me a painting of a depressed woman which had hung in his former office that I’d admired for years. It dominates my living room. I mention this to show how tuned in Jon was to his patients and how he looked for ways to be kind. There was a time when I couldn’t pay, but he assured me it could be made up whenever we could afford it. All this is vital to treating bipolar. Our lives are spent on a rollercoaster. Our loved ones are pained and don’t understand. A therapist who respects you, isn’t puzzled by your rapidly changing behavior, is never judgemental or impatient makes us feel we do have value and maybe continuing the struggle to live with bipolar is worthwhile. That’s why I am here, able to answer this survey.

Last August Jon told me he was retiring. I cried. For forty-five minutes. He said it would take some time, but he would help me make the transition. During the ensuing months we decided to meet twice a week, sifted through possible therapists until zeroing in on one, and tidied up a major issue that had plagued me on and off for years. I wished my last visit would be cheerful, showing my gratitude for all he had done, but that seemed impossible since every session now ended in tears. Before the last session I spent time preparing for it. I gained the realization that 1) my husband had become my main support 2) my friend, Kitty, on PatientsLikeMe – and other members – would continue to give me help and strength and 3) I reviewed what I’d learned from Jon over the years.

I was able to come to the last session in peace with a smile. We laughed about things that happened over the years. He said he would always be available by phone and we parted with a warm hug, sealing nearly four decades of struggle, pain and healing. I will always have what he’s given me. It is enough.

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“In my own words” – PatientsLikeMe member Eleanor writes about her journey with bipolar II: Part 2

Posted June 14th, 2014 by

Back in May, Eleanor (redblack) wrote about her some of her experiences with bipolar II to help spread the word for Mental Health Awareness Month. She’s continuing this month by sharing about the personal support system she’s developed through a wonderful relationship with her husband Jim, her special bond with a particular mood community member and how she’s learned about the value of sharing the “whys” of her bipolar II.

If you’ve been following along, keep an eye out! We’re going to post the third and final part of her interview in July. Miss the first part? Read that here.

The benefits of spousal support

My husband of thirty-seven years, Jim, is my strongest and most dependable support. We met forty-two years ago teaching high school in New York State. I was the single mother of two boys, four and five, who are Native American and Black on their biological father’s side. Jim was a Catholic priest. The boys soon adopted him as a father figure. We married five years later and moved to Maui. Jim adopted Mike and Mark, and later, we had James and Kalea. Before our marriage, he had already helped me through one suicide attempt.

Over the years, we have always felt we were destined to be together. I can honestly say that in forty-two years, he has never even raised his voice to me. Because of abuse in childhood and my first, brief marriage, I could not have borne it. During our marriage, he has seen me through three other suicide attempts and multiple ECT treatments.

He knows my moods and when they change. During depression, he is my cheerleader, safe harbor and my memory, celebrating the loving, talented person he believes me to be, and reminding me of all my accomplishments. When I am in the pit, he makes certain I know he is with me, but never tries to force an affection frozen within me.

As I worked the last six months to survive without my retiring psychiatrist of thirty-seven years, I have become more aware that Jim is the center of my support and always has been – not my doctor. As this realization grew, our relationship deepened. I thought I knew what a loving marriage was. However, our current relationship is stronger and more beautiful than ever. He is the one person I know who, while having no real experience of being bipolar, knows what to say, how to provide safety and strength, and how to let go when I am able to enter life again.

Support from the members of PatientsLikeMe

After ignoring the other members of PatientsLikeMe for the first few years of membership, I felt compelled to respond when several people commented on my InstantMe daily entries. I had mentioned the difficulty of finding a therapist to replace my retiring psychiatrist, and one member in particular wanted to help me. She lives in a major city and suggested I go to the nearest hospital associated with a medical school where there would be residents available for counseling. I explained here on Maui, we raise pineapples and sugar cane, and most jobs are related to the tourist industry. Hawaii is expensive and lacks mainland amenities such as many doctors from which to choose, support groups for mental health, and large shopping malls (which seem to be a priority for would-be residents).

So Kitty became my sounding board, my comrade-in-arms in the challenging world of bipolar II, and most of all, my friend! I discovered I was often more open to what she had to say than when my doctor said the same thing. Being put together very much like me, she had a perception of a situation I might find perplexing. She cut to the heart of the matter. Once, she suggested a different take on the puzzling behavior of a family member, and after following her advice, the relationship was mended.

She is funny and optimistic despite many problems, and with pretty much daily communication, we manage to keep track of each other’s ups and downs. It raises my damaged self-esteem to be able to encourage Kitty and others. I have learned that friends and family, although well-meaning, are often clueless as to the nature and future of being bipolar. Seeing from PatientsLikeMe members that this is pretty much a constant, I’ve been more at peace and even forgiving toward comments such as, “I’ve tried to help you, but you don’t make any effort,” or “Hasn’t that doctor found the right pill yet?”

Members of PatientsLikeMe also assured me by the tone of some of their entries that I am entitled to lose hope and to want to – and actually do – give up occasionally, and even be quite irritable! None of us are saints. We often feel like the last soldier standing in a curious and never-ending war – and that’s OK!

I could have used their wisdom and comfort years ago, but I’m so grateful I have access to them now. Thank you, staff of PatientsLikeMe, for making that possible.

Using patient charts and InstantMe tools

As for the charts and InstantMe tools, I am making more use of them as time passes. The charts are very helpful – and surprising – since my memory has been seriously impaired by depression. I find myself wondering, “How was it last summer?” and then can go to the charts and see immediately how I felt. Remembering the events of those months, I am often glad to see I handled things well, or sometimes, that I struggled terribly and this struggle accounted for the relationship that fell apart at that time. Seeing and using the daily InstantMe e-mail is a reminder and little push to work again.

Now that I have connections with other people on PatientsLikeMe, I find myself always filling in the comment section on InstantMe, something I originally never did. This is because I now realize the value in sharing the “whys” of my InstantMe selection. I get feedback from others and formulating a reason for my choice helps clarify it in my mind.

Reading past comments of my InstantMe, I’ve been able to spot triggers that appear again and again. I learn what feeling and experiences should be red flags for me. Often having questions or doubts about a medication, it’s so helpful to be able to find out what others have experienced with it. After all, my doctor isn’t taking it. Other members of PatientsLikeMe are!

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