For many years, perhaps because of years spent in counseling and battling mental health disorders along with my years of human biology courses required for my degree, I have had a fascination with the workings of the human body. I believe this has given me the unique perspective of viewing the brain as one of the many places where the human body can break, get sick, stop working and be in need medical attention. The head is not separate from the body, but over hundreds of years, ideas about mental illness have led to a perception that problems of the brain represent a fatal flaw in a person's character. With these thoughts on my mind, of late, I have begun seeking out medical related books, articles and podcasts. Because of my own brain's current struggle to write in a manner that I feel can accurately expresses my thoughts and experiences I thought I would share these books, articles and podcasts that have been interesting and helpful to me. Although many of these are not specifically related to bipolar disorder; I have found them helpful. As knowledge is power, understanding the body and medicine in practice can bring, I believe, a better understanding of one's self, medical practitioners and the human beings around us.
A few weeks ago, I came across a story on The Moth Radio Hour, entitled July 1st by Danielle Ofri, MD; I have included the link to it below. The stories, one of which she shared on The Moth, can be found in her book, Singular Intimacies; Becoming a Doctor at Bellevue. After listening to her story, I immediately searched my local library for her books. I am not a voracious reader nor am I a fast reader, but I read this book in three sittings. It is a book of stories of patients and stories of Dr. Ofri as she navigates the world of medicine from medical school to residency. My take-away, among many, from the book, was gaining insight into a human being with insecurities, passions and life challenges we all experience, who happens to be a doctor. A helpful perspective of the person beneath the white coat. You don't need a technical background or necessarily a constitution for the practice of medicine, just an interest in being human and interacting with the other imperfect humans around you. https://themoth.org/radio-hour/mr-rogers-bellevue-super-markets-and-coney-island I have just finished reading Dr. Ofri's newest book, What Patients Say, What Doctors Hear and would recommend this book to every doctor and patient. In particular, I would recommend it to people who have had difficult and frustrating interactions with doctors and/or those who have chronic illnesses or diseases. In fact, I would recommend contacting your local healthcare organizations and encouraging them to suggest that all their physicians read it and then note that they have read it in their professional profiles. If I were looking for a new doctor, researching profiles, I would definitely be swayed by seeing that the doctor had read this book. Yes, I think the information is that important in providing better care! My two take-aways: 1) Doctors, from the moment your appointment begins, give your patient an opportunity to talk and get their concerns out before you start talking and interrupting. 2) Patients, bring a list of your most pressing concerns. If you can bring a log or timeline of your symptoms or illness, this will significantly contribute to helping your doctor provide the best care. In addition, bring a paper and pencil or smartphone to take notes of instructions or recommendations from your doctor. In a nutshell, doctors close your mouths and listen for a few minutes. Patients, come prepared with "data" and a way to take a few notes. In What Patients Say, What Doctors Hear, Dr. Ofri again uses stories of real patients from the perspective of a physician who is imperfect and making attempts to better communicate with and understand her patients. Ofri provides tremendous insight. Although, I would have prefered a book a little less heavy on the citing of studies, I understand the book is also written for physicians. Again, I would highly recommend every patient and every physician read this book. I look forward to reading Dr. Ofri's other books and hearing more from her. You can find a list of all her books, articles and other public works on her website http://danielleofri.com/. Up next, more podcasts, radio programs, books, articles and even a television show that I hope you will find as helpful and interesting as I have. The current book on my nightstand is "The Tale of the Dueling Neurosurgeons"; whether it is helpful or interesting remains to be seen, but the title certainly piqued my interest.
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Thank you for returning to my blog; I have been absent for several months and apologize for those who had hoped to find consistent help and support here. My initial reason for my absence was a new diagnosis of migraine headaches with light sensitivity. Time in front of a computer screen was painful. This battle has continued as my doctors and I have tried and failed over and over to find a source of relief. The first bout lasted daily for 3 straight months. We thought we had found the culprit and I had a nice reprieve for two months, then they returned slowly until they ramped up to nearly daily again. When I was able to start using the computer for an extended amount of time, I made attempts to write posts for this blog, but it was I found that I could not communicate in the experiences I was having; the words seemed to be missing. There have been other challenges in these past months, but for whatever reason, I can't quite seem to put them in words. So, I hope you this will suffice as an explanation for my absence.
With that introduction or rather reintroduction, I have found things I do want to share with those of you who have kindly followed the blog. Because this blog is a space to share my experiences in a hope that it will help others, you will see that my experiences, of late, look a bit different than the past. My heart breaks when I see children who are struggling with anxiety, depression, ADHD, sensory issues or other challenges that specifically affect how they experience the world and relationships. I have often referenced Maslow’s Hierarchy of Needs when discussing my childhood challenges. My loose interpretation, if basic needs are not met, a child has difficulty moving through the stages of emotional, social and psychological maturity. Even if they are “forced” to move through them, if their foundation is not solid at each level, at some point the floor will collapse. They will then fall to the last level at which they had a solid foundation. When this happens later in life, it is makes the process more challenging and often more complicated as it may occur after one is already married and/or has children. The spouse and children are then impacted by the sudden change in the person’s emotional availability. It is my theory that one of the greatest ways we impede this process of growth is when, we as parents, let our pride and appearance become more important than the growth of our child. I am not advocating for “free-for-all” parenting with few rules and all out experimentation, but I am advocating for getting our priorities right. Teaching and requiring our children to be respectful, kind, polite, honest are more important than insisting that their clothes match, their hair is done the way we think it should be or whether they are fitting in with the right clique. But, I digress, I am not here to promote my parenting theories, my point is the importance of seeing the real needs of our children and not getting lost in the superficial. I have a friend who has a child on the autism spectrum, who shared the following quote; “My child is not giving me a hard time; my child is having a hard time”. Just like any other investment, the time we take to find out why our child is acting as they are will be very worthwhile. Often our child doesn’t have the words to express what they are experiencing inside and therefore they act out in ways to get our attention. I am not naive enough to know that children will play us, but more often than not, they are trying to communicate that something is distressing to them. If we don’t take the time to understand what that is and work with them to develop the skills to cope, we are doing them a disservice. Eventually it may lead to a lack of trust in our love for them, which will impede their emotional growth and ability to have healthy relationships in their life. Yes, it is time consuming and yes, it may make you late for appointments, but if you take the time to figure it out, it will create a happier and healthier environment for you and your child. So if your child seems to be distressed by something that you think they need to just get over or be “pushed” through, I would encourage you to give it a closer look. Your child is not you, they are not experiencing the world the way you are. Of course, most of us with children already feel there is never enough time, but I would suggest that there may be a great deal of things you can give up in order to address the situation and get your child help as quickly as you possible. Give up the lessons, the play groups, the camps and clubs (this doesn’t have to be permanent). Use that time and money to take your child to a professional for an evaluation, give them an opportunity to try therapy and, when appropriate, try a medication that has been developed to help them. Recognize that getting into specialists; assessments; regular therapy appointments; finding the correct medication; researching, interviewing and finding doctors and specialists you and your child are comfortable with will take time and perseverance. Let your child know that there may be some ups and downs and that some things won’t work, but that you will just keep trying because you want them to be as healthy as possible. Don’t delay in this process, set appointments now, if you have concerns, it may take as much as three months to see specialists like psychologists and psychiatrists. Don’t wait until you find the perfect doctor, be willing to drive a distance, get a babysitter, do whatever it takes. Most parents, who I know, sacrifice tremendously for their children to give them the most opportunities and best upbringing they can. Rearrange your priorities, your child is vulnerable, they are relying on you to get them the help they need. You wouldn’t delay getting your child to the doctor if they showed signs of strep throat; and if they tested positive you would get them on penicillin. Do the same for them if you see that anxiety, depression, OCD, ADD, etc. are impacting their quality of life; chances are you will recognize it because it is impacting you and your family’s quality of life and emotional health. If you are uncomfortable with medications or psychologists, I would encourage you to recognize that these are proven resources; at least meet with doctors and discuss your concerns with them. Prior to the public awareness of children with sensory issues, I failed to handle my daughter’s challenge with this issue in the best way. From a very young age, she would “freak out” about her clothes. Before she could identify specifics, I saw these freak outs as frustrating tantrums that prevented us being able to get out the door in a timely fashion and sometimes at all! Later, she was able to tell me that tags, sock seams and stiff clothing were uncomfortable on her body. Dressing a little girl is often a dream of mothers and it was for me. I wanted her in frilly, lacy dresses, cute overalls and little jeans. She wanted to be in pants, tops and dresses that were made of soft stretchy fabric. It seems silly now that I would have let my opinions about her clothing be more important than her distress, but I had a lot to learn, just like most parents. When I got down to the bottom of it, looking beyond the tantrums, I was able to recognize it was causing her real distress. From then on, I would never buy clothes without her helping me pick them out. This issue of clothing was not just uncomfortable for her, it was distressing to her- that is why she wasn’t just whining about her clothes, she was “freaking out”. She needed to communicate the seriousness of it to me. Of course, we had lessons on using words to communicate, but often children do not have the words and I hadn’t even heard of, “Sensory Processing Issues”. Medication and children, it is a touchy subject and I can understand why, but I want to go back to my experience. Let me preface, by acknowledging that many medications are inappropriate to start children on before a certain age. Respect that restriction and adjust your world and your child’s world to what works and use other resources that are available. However, when the time is appropriate and your child is still struggling and has a sound diagnosis from a trusted medical professional, please consider medication. As I have explained in a previous post, imagine living your life 10 steps below your neighbors, friends, co-workers and/or classmates. Even with the strongest will and hardest work ethic, you are using considerable emotional energy to just reach step 5 and then you are expected to function similar to others although you are 5 steps below everyone. Once, I was on the correct medication, I was only 5 steps below everyone and so yes, I had to stretch further to meet the normal demands of the day, but life was so much happier and way less exhausting. I could experience a fuller life and my self-esteem was able to grow. The medication wasn’t giving me self-esteem, it was giving me the ability to have more success in what I wanted to accomplish; who I wanted to be was now within reach. Please recognize that your children need every resource you can find for them and make this investment; don’t push them beyond what they can do because of appearances. It won’t do you or them any good. Try considering the worst-case scenario, for instance, your child is overwhelmed trying to attend school regularly and get the treatment they need. Your child's ability to feel happy, healthy and comfortable in their world is much more important than missing school several months or even a year of school. As a parent, your attitude will influence your child’s attitude; if you don’t act like it is the end of the world and let your child know that adjustments can always be made, they won’t feel like it is the end of the world. In the scheme of things, we are talking about 1 year of a life that might last 80 years or more. It is important to have perspective! I am aware of more than one family where the parents cannot agree upon the treatment for the child. More often than not, it is the father who objects to medications and therapy. In marriage, we often have to choose our battles, I would recommend choosing this battle. Let something else go if you need to. Usually, the father comes around when they see the positive results. This is not an easy path, but it is an investment as much as any lesson, camp, educational opportunity you provide for your child. If you are a religious person, pray for the strength to help your child. If you are not a religious person, take courage and persevere- I know you can do it! Parents are always stronger than they realize when it comes to giving their child the best they have! The importance and beauty of receiving validation is that, how a person feels does not require a defence using quantifiable facts, but is rather acknowledged, on its own, as real.
Why would anyone say, “I wish I had cancer”? Yet, I have said it myself and found that I am not the only person living with a mental illness to say or think the same thing. Of course, we don’t want cancer and I can’t pretend to have any comprehension of what it must be like to have cancer or watch a loved one suffer from the devastating effects and treatment. What we are really saying is that we ache to be able to share our diagnosis and receive the same outpouring of love, compassion, sympathy and support we see given to someone who shares their cancer diagnosis. Just as a person who has cancer has pain, treatment challenges, decreased independence, extra strain on their family, the need for a listening ear, financial devastation and/or the loss of employment those of us with mental illness experience the same. Our hearts ache to be received and treated with the same compassion and support. We wish we could speak up and say, "I have bipolar", and have complete confidence that people will rally around us. Perhaps this sounds selfish or even jealous; however, it is not that we want those with cancer, or any other serious illness, to receive any less support, we just wish that we could receive it as well. The Susan G. Komen Foundation is a tremendous example of how a once taboo subject and diagnosis have been transformed. I dream of the time when mental illnesses can receive the equivalent research funding, public support and nonjudgemental embrace that breast cancer receives. That is the reason I am writing this blog, if I have the ability to speak up I need too, otherwise, illnesses such as bipolar disorder will continue to weighed down by stigma. I have been thankful to see the progress that we have made in many more people being able to openly discuss their diagnosis of depression or anxiety and be received with support and compassion. I look forward to the day when those of us with bipolar disorder will be received that way as well. I am also grateful for the public figures with bipolar disorder who have “come out” and shared their diagnosis and experiences. Perhaps a sliver lining to my current situation is that I may openly speak out about my illness without fear of it negatively impacting my career. I understand that others do not have that luxury...perhaps the only time unemployment could be considered a luxury. If you live in the U.S., you have most likely experienced the frustrations associated with filing taxes, obtaining a driver’s license or a social security card; and perhaps that is the extent of your interaction with government processes. Imagine magnifying those frustrations, add a constant stream of requests for documents, lengthy forms to be completed, and conflicting due dates, which jeopardize your ability to receive assistance. Then imagine doing all this when you are very ill, can’t think clearly and can hardly leave your house. It sounds like something you would want to avoid. I don’t personally know anyone who is homeless, but I can understand the thought of giving up and finding oneself trying to survive on the streets when facing this challenging situation. It also explains why, I have chosen to repeatedly get job after job rather than seek assistance, even when I am in a desperate place. Luckily, I have been blessed to have friends, family and my church to catch me before I reach rock bottom. To be fair, I feel that the process of receiving food stamps is very efficient and can be escalated if a person is in desperate circumstances. In previous posts I have spoken about the challenges I have specifically faced in this past year and a half, including taking short term disability (STD) and losing my job due to illness. What I now want to share is the “non-medical” side of this past 18 months. I was blessed to have a job where I could apply for STD and LTD (long term disability), any costs were paid for by my employer. The STD was rather quickly approved, I received 60% of my pay for 13 weeks. As my health problems looked to last longer than 13 weeks, I then applied for LTD, this was again through my employer’s private insurance company. I was told that I should also apply for Social Security Disability (SSD) at the same time. I did all of this. I was granted the STD, but denied LTD. The process of assessing my need for LTD was to request all medical notes and any tests from the doctors who were treating me. This involved phone calls, faxes, email, mail, and trying to make sure the proper information was being given to the correct person and confirm receipt to meet the deadlines. Throughout this process, I continued to direct the insurance company to my psychologist as he had a very good idea, including a great amount of detail, about how poorly I was doing. Although, the company took copies of all his notes-- I was meeting with him at least every two weeks for 50 minutes. This gave me a chance to share much more information than I could in the 15 minute appointments with my psychiatrist. Long story short, I was denied, in good part because the insurance company wanted a definitive statement that I was not able to work, and when my psychiatrist would not give it, they brought in an outside doctor who spent all of five minutes discussing my case with my psychologist. I was denied LTD, which I appealed and which I was denied a second time. It was frustrating and it would have been a great help to have been receiving LTD (50% of my salary) all these months. However, I understood as a private insurance company, they really had the freedom to choose whatever parameters they wanted and deny me if I did not fall within them. Therefore, I knew it was a 50/50 chance. As I had been required, I had filed for SSD, I retained a disability attorney, which was highly recommended if I wanted any chance of being approved. She also had me apply for SSDI (Social Security Disability Insurance). At the time I retained her, she explained the way the process of applying worked. She stated that 90% plus of all disability applications are denied the first time a person applies, hence my subtitle, “Guilty Until Proven Innocent”. I was given massive amounts of paperwork to complete and again my doctors’ notes were requested, they had forms to complete, etc. Clearly, an attorney was needed to manage the what, how and when for the application process. I put more trust in her than I would have otherwise. My cognition and memory were still diminished and so the challenge of just doing my part was already a stretch. I won’t go through the step by step process, but here are the things that I would recommend if you go through this process.
My current status on the disability front; I have been denied twice due to two incompetent psychiatrists and I am now waiting to see a judge, which takes 12 to 15 months. In the meantime, trying to receive financial or medical assistance is difficult since it looks like I don’t have a disability and I am just trying to work the system. A final note, there was a stark contrast in the way I was being treated by my psychiatrist prior to my application for disability. In fact, I had been seeing him for two years, without a problem, prior to this. Once I applied for disability I was viewed and treated in a completely different manner . This is maddening; to add insult to injury, I have an illness for which I am discriminated against and then when I try get help, the very medical professionals who are supposed to be treating me, discriminate against me. As promised, I will write about some of the legislation that is being pushed to make some improvements in our medical treatment, but as usual I have given you plenty to read for now. Keep hope, honestly, it gets better; even with all these trials, I have so many blessings that keep me buoyed up. Perhaps one of the more frustrating things about bipolar disorder is finding and keeping employment, or so it has been for me. As noted previously, I have other challenges that have contributed to employment issues. In the past 20 years, I have had approximately 20 jobs. In truth, if I could have found a part-time job with benefits, I may have had fewer jobs. This is where a great deal of my frustration lies, those who are able to receive government assistance and more specifically medical assistance, have been pregnant woman, parents with children and those who have a disability. So, is bipolar disorder a disability? Yes, however, in order to receive medicaid or government medical assistance you must file for Social Security Disability, which must be approved. This can be a two or more year process, which usually involves a lawyer; I will cover this in more detail in a later post.
The point being, it has been impossible to find part-time work with medical benefits that would allow me to make enough to support myself. Don’t misunderstand me, I wanted and tried, for 20 plus years, to work a regular full-time job. In fact, I have never had any aversion to hard work. I started babysitting at 10 years old. I had three paper routes in elementary and middle school. I babysat throughout my entire pre-college years, I was a bagger at the local grocery store, I kept house for a women. Every summer for seven years, I worked as a tour guide at a state park. In college I worked at a bakery, an ice cream shop and for professors in my department. I lived and worked out of state as a nanny and later on a ranch for a summer. I like to work and I am happy to work, that has not been the problem. The only extended period of time that I did not work was when I was first married and had my daughter, I have always been employed. The exception being this past 18 months when my medical treatment went awry. Following my divorce, I went back to work and started my first professional job. I was living in Silicon Valley during the “dot.com” years and jobs were plentiful as was the chance to increase your salary rather quickly. I took advantage of this and doubled my salary, by doing a bit of job hopping. Unfortunately, the dot.com bubble burst and I along with the majority of my friends were laid off. I returned to college and completed my Bachelor’s Degree and was recruited for a position in Boston. The specific type of work was not something I was terribly interested in, but the opportunity, pay and company looked good. In less than 9 months, I was on short term disability (STD) and struggling to cope with the demands, hours and politics of the position. It wasn’t that I wasn’t smart enough, it was, as I have explained previously, the exhaustion of living each day with bipolar. The exhaustion combined with the normal stresses of a professional job, the politics and the long hours pushed me beyond my limit. After months of being on STD and still struggling to find the right medications, I left. Thanks to a friend, I spent a few months recuperating while working with my doctors to find the right combination of medications. Eventually, we got the medications in a good enough place that I felt I could try working again, which I did. For years, I had what I called a “traveling or moving bug”. If I was in one place too long, I started to feel antsy, this makes living a stable life difficult. Once the medications were in place, for the first time, since I could recall, I thought, "I hope that I can live in this house and stay at this job for a long, long time". This was a new and nice feeling for me. In the meantime, as much as I wanted to remain at my job , the familiar stressors started to increase: the politics, the deadlines, the hours- always the hours. As in school, I had to work three times harder than the other members of my team to keep up. Although, my bipolar medications were in a good place, the long hours and strain of politics took a toll on me. My bosses were impressed with me and I had received some good raises; I wanted to be able to keep up and stay at the company, but it was too much. My boss worked with me and I was able to work from home for a while, but eventually I knew what would happen. I left the job and took a job with less responsibility and hourly wages hoping this would keep me from overworking myself. Of course all of this came at a much lower pay and I just couldn’t make it financially. For the next nearly 10 years, this became the pattern for me-- salaried professional position with a good company and advancement, unable to sustain the demands, quit, take less demanding hourly job with low pay, unable to sustain myself financially, quit and repeat. There wasn’t any way for me to take care of myself and my daughter, financially, and at the same time take care of my health. There were many times, I wished that I could have gone to my boss and explained, I have bipolar disorder, these are my challenges. Technically, I should have been able to do that and, with the support of the law, they would be required to find accommodations to help me succeed. The reality was, that the stigma was so great, it would have caused me more problems than help. Early in my career, I assumed that my conversations with Human Resources would be confidential, but I can’t say I have found that to be true. In addition to the particular challenges I have noted, most psychotropic medications have side effects that make work challenging. Vital to keeping my mood stabilized (and this is true for all people with the disorder) is sleep. Not getting enough sleep can send you into a place of mania, so it is key to manage sleep; I have insomnia and have had it all my life. When I was diagnosed with bipolar, I was told that I would have to get my sleep in place to keep myself stabilized. So, I take sleep medication every night. It has been a struggle to find a medication that works and doesn’t leave me with a hangover. I have tried multiple ones, I have cut pills in halves, quarters, etc., trying to find the amount that will give me the right amount and kind of sleep and the ability to get up in the morning and be fully functional. Another thing that can lead to mood destabilization is too much blue screen--computers, televisions, smart phones, etc. My work has always involved hours on a computer so, trying to manage all of this is terribly challenging. Since, what I might call “the ADHD debacle” and ensuing 18 months of trying to put my life back together, I have worked exceptionally hard at getting my sleep in a good place. Anyone who has had problems with sleep has most likely heard the phrase “sleep hygiene”. It is as important as any sleep medication. My sleep hygiene involves, being home by 7pm every night. I take my medications, all of which causes drowsiness, at 8:30pm and climb in bed sometime before 10pm. I am off all blue screens by no later than 9 pm. As you can imagine, this has a significant impact on the types of activities I can be involved in and eliminates any evening or night time employment. There is a great deal to manage with this disorder and all of us who have it, need, if nothing more, support in keeping ourselves healthy. We do not need to be looked at as hypochondriacs, seeking attention, lazy, looking for a handout, trying to work the system or any other derogatory stereotype. The majority of us are doing our very best with little if any support from society, employers or government assistance. If the disorder doesn't leave a person feeling hopeless enough, the frustration of not being able to support one's self financially and retain your health will. Reducing stigma will be very helpful for those of us with bipolar so that we might receive the support to manage our symptoms and be as self reliant as possible. I want to specifically address this antidepressant for three reasons: 1- the difference between Effexor and other antidepressants; 2- the generic is not equivalent for Effexor XR; 3- a caution about certain people’s response to reducing their dose and/or stopping the medication 1-Many of the well known antidepressants are of the type known as selective serotonin reuptake inhibitors (SSRIs) ; these include Paxil, Prozac and Zoloft. In basic terms, SSRI’s work by increasing the levels of a brain chemical called serotonin. The body naturally produces serotonin and keeps it at a certain level, but SSRIs can increase that level by blocking (inhibiting) the re-absorption (reuptake) of serotonin. Effexor is a serotonin-norepineephrine reuptake inhibitor (SNRI). Similar to SSRIs, SNRIs block the reabsorption of serotonin. But unlike SSRIs, SNRIs also block the hormone norepineephrine. By doing so, brain cells seem to communicate better. This boosts a person’s mood. Doctors prescribe SNRIs to adults to treat major depressive disorder, generalized anxiety disorder, social phobia and panic disorders. 2- There is a generic version of venlafaxine XR (the active ingredient in Effexor XR) that comes in tablet form, compared with the capsule form of Effexor XR. However, they are not AB-rated (one of the Food and Drug Administration’s codes for bioequivalency) because of the difference in tablet and capsule. This basically means that one cannot be substituted for the other. Doctors needs to specify venlafaxine XR tablets on the prescription, if they want to prescribe the generic form. However, the tablets are not FDA-approved for the treatment of panic disorder or generalized anxiety disorder, which Effexor XR capsules are. Like Effexor XR capsules, venlafaxine XR tablets are FDA-approved for major depressive disorder and social anxiety disorder. http://www.everydayhealth.com/drugs/effexor 3- Over the years I have been prescribed a number of antidepressants and stopped them for various reasons. Imipramine, Paxil, Celexa, Prozac, Wellbutrin, Effexor XR and Abilify. I suspect there may be more, but these are ones I recall. Most were either stopped because they did not seem to be addressing my depression well enough or the side-effects were too uncomfortable. (As an aside, I seemed to do well on Wellbutrin, but after being on it for a week or so, I made a pan of brownies, ate the entire pan in one sitting and could have eaten a second. My food intake has always been regulated by a sick feeling when I overeat. That regulator seemed to have gone missing. I called my doctor and said, this isn’t going to work out. The brownie incident still makes me a chuckle). I am not exactly sure when I was prescribed Effexor, but it would have been not more than a year before I started being treated for bipolar. It seemed to work well and so I remained on it as we worked through finding mood stabilizers. At that time, psychiatrists did not have concerns about patients with bipolar being on an antidepressant, in fact, I would venture to say it was rather typical. As my psychiatrist and I were starting to settle in on the mood medications, I must have had some depression issues. A new antidepressant, Abilify, had recently come to market and so my doctor suggested I give it a try. I tapered off the Effexor while starting the Abilify. After two days on the Abilify, I checked myself into the hospital for suicidal thoughts. I had never had any thoughts of suicide previously; I knew it must be the Abilify, as most antidepressants list suicidal thoughts as a potential side effect. The hospital and my doctor worked together; I told them, you need to get me off the Abilify and back on the Effexor. I spent four interesting days in the hospital while they tapered me off Abilify and back onto Effexor. I was fine after that. Until last year, I believed Abilify was the culprit. However, I now suspect that may not be true. As noted in my previous post, the psychiatric community has recognized the problems antidepressants can potentially cause for people with bipolar. Essentially, the two psychiatrists who failed to treat me correctly, believed I should taper off Effexor XR (the XR refers to extended relief). I take two separate capsules per day, a 75mg and a 150mg. So, I stopped the 75mg capsule. I was already doing poorly, but after about a week, I went back on- the results had been awful. I was seeing my psychologist on a regular basis; after hearing my response to the reduced dose he explained that reducing or discontinuing Effexor had to be done very slowly. As many of his patients are on medications, he knew that many of them had to open the capsule and remove one bead at a time. So, I started that method; my psychiatrist thought this very slow method was ridiculous, but I didn’t trust her much so I continued. I was still having so many issues, including continued cognitive and memory problems. My anxiety and social anxiety were ever increasing and I noticed I was starting to feel like I was going to have panic attacks. I also began having frequent and severe headaches. Between my poor memory, social anxiety and illness, I did not see my psychologist for a few months. When I was finally able to see him, he asked me if I was still reducing the Effexor and if so, how quickly. I said, I am removing one new bead from the capsule daily. He explained that this was much too fast and that removing one additional one per week was a better pace. As noted in my previous post, I eventually decided to just go back to my normal dose that I had been on for years. About two days after resuming that dose, I recall standing in the middle of my kitchen and having a thought. As my mind completed the thought, it occurred to me that my normal thought process was returning. I knew that I was struggling cognitively, but it was interesting to feel like, “hey, I recognize that way of thinking, that is how I used to think”. It was a much overdue breakthrough. About a month after I started to feel like I might be able to accomplish more than grocery shopping and laundry, in my life, I got sick. I also began having increasing headaches, which were then diagnosed as migraines. It seemed that my sensitivity to light was growing each day. I has always loved light, I keep my blinds open until the last bit of sunset is gone. I go in the room with the most sunlight during the day. Light has always made me feel happy; now I was having to close all my blinds, keep the lights off, I even started to wear dark glasses while watching TV. Photophobia, which is a term used to describe the type of sensitivity to light that I was experiencing is a side-effect of Effexor. It just occurred to me today that perhaps my body is responding to the Effexor as if I had just started it and these are side effects that won’t last. Or is this a side effect I have developed because I tried to decrease the dose. The good news is that my anxiety, social anxiety and panic attacks have been significantly reduced. I know that some people do not want to be tied to a medication for their entire life. Sure, I understand that, but I am not that person. I tried to live the first half of my life trying to will my way through my disease. Waking each day and wanting to live and not hoping to get hit by a bus and die, that is worth taking medication for my entire life. You may also look at my experience with Effexor and tell me that it is incredibly addicting and that I should get off of it. I would disagree, I have suffered from severe anxiety and social anxiety since I was very young. This particular medication is specifically designed to address all those issues along with my depression. I don’t have a doubt in my mind that my brain has some glitches, I did not make them, it came that way. I can choose to live miserably or I can choose to use all the resources available to me and live as fully as possible. I choose to live as fully as possible; life has good and bad. I have had good psychiatrists who helped me find the correct diagnosis that was life changing for me. I have also had psychiatrists who really messed things up for me. I have a medication that has blessed my life, it has also caused me a lot of trouble. I won’t ever write off either, I believe both are essential to keeping myself as emotionally and mentally healthy as possible. Lots of people have a resume and education that represents their hard work and strengths. I recently realized that I can’t put my more than 30 years of experience living with mental illnesses and the resulting strengths and growth on a resume. However, what I have accomplished and the progress that I have made is just as valid as someone who has honed their expertise for 30 years. There is always hope, it might be barely recognizable or seem to be just out of reach each time you think you have almost grasped it, but it is there. A good, quality, competent and well qualified psychiatrist is not easy to find these days. Until this past year, this was not a huge issue for me. Over time I developed rather low expectations for my psychiatrists; if I happened to find a good one, it was a plus. Once, my psychiatrist and I started treating me for bipolar disorder and we found a good cocktail, things were fairly steady. It was less expensive to see my PCP than my psychiatrist, so when possible I would just see the PCP and have him or her prescribe and renew my medications. To be fair, the psychiatrist who started treating me for bipolar disorder and worked with me to find the right combination of medications, was excellent. I was referred to him by my PCP and they regularly communicated regarding my treatment, which I believe was helpful. As noted, I have not been overly impressed with most, though not all, of my psychiatrists (remember, I have moved a lot so I have seen a quite a few). In 2012, I started seeing a new psychiatrist whom I had been referred to by my previously noted, excellent psychiatrist. This new psychiatrist had little bedside manner; he asked the questions that he was supposed to ask at each appointment… how is your appetite, how is your sleep, have you had suicidal thoughts, etc.? After seeing him for about 2 years, I started having some new and significant problems. I was losing my ability to focus, experiencing memory loss and my insomnia was getting worse. Over the course of the next few months, we discussed these new problems and he made some suggestions. As the problems progressed, my ability to work became more and more challenging, particularly because my job required a significant amount of focus and memory. Finally, my psychiatrist referred me to a psychologist who specialized in ADHD evaluations. Over the course of the next 6 weeks, I was evaluated - there were “take home”, in office, verbal and computer evaluations, totaling about 5 hours altogether. As noted in a previous post, I was diagnosed with ADHD, but the psychologist also found a significant deficit in the executive function portion of my brain. The results were sent to my psychiatrist and he began talking to me about trying ADHD medications. Although, the focus and memory problems were making my job more and more difficult, I was extremely hesitant. When I was in the hospitalization program, there were a number of people with a bipolar diagnosis. One caution that was repeated over and over was, once you had established your medications, you should never go off of them and be extremely cautious about taking any medication that would destabilize your mood. I had taken that to heart and protected my cocktail of medications carefully over the years. I was extremely hesitant about trying the medications because all the ADHD medications listed “mood changes” as a potential side-effect. With my focus and memory getting worse, I finally agreed to try one. Within a week, I had to take FMLA. Perhaps the medication was helping me have better focus, but it was nearly impossible to tell because I felt like a windup toy, I could barely sit still, I would go outside and walk and walk to try to work off the relentless wound up feeling I was experiencing. I eventually took a yoga class to try to cope. I probably lasted less than 2 weeks on that medication. We tried a total of four medications in the course of about 5 months. During that time, I never lost that relentless wound up feeling in addition to ever increasing anxiety. Both my body and my mind felt wound up, I couldn’t walk enough to make it go away. I don’t know how to explain what I was experiencing, but I felt like I was losing my sanity. Throughout the five months, following each medication trial, I would take weeks before I would agree to try another medication. The only reason I kept at it was that I was on FMLA and I figured there would never be another time when I could afford to feel so poorly. Throughout the months, I would tell my psychiatrist how badly I was doing. His response was, “the medication is fast acting and then out of your system. You have been off the medication for a week (or however long it had been), the medication can’t be causing you problems any longer.” As the months progressed, I began experiencing extreme anxiety, which was seriously impacting my ability to have any social interaction, in addition to the tremendous psychological pain I was experiencing. Again, I went to him and told him how poorly I was doing and that I needed help; I told him that I felt like the medications were causing a manic reaction. His comment was, “you don’t look like someone who is manic and if you were you would be in the hospital”.
That was it, it was clear he did not believe me and I was in serious need of help. I asked my psychologist if he could recommend someone. At this point, I had lost my job as I was unable to work in any kind of setting; this also meant that I had lost my health insurance as well. I certainly couldn’t financially afford to see a psychiatrist, but I couldn’t emotionally afford not to. Another frustration I had during this time was the unwillingness of my psychiatrist to communicate with my psychologist, which could have been very helpful in identifying my needs and getting me the proper help more quickly. I will discuss this more in depth in another post, but I believe better and more timely care could be provided to those with mental illness if a more holistic approach were taken. Thankfully, my psychologist was able to get me an appointment with the psychiatrist who practiced in his office. My first appointment, was was a night and day difference from my appointments with my previous psychiatrist. She was well educated and current on every issue I was experiencing. She explained that what I was experiencing was a result of the ADHD medications destabilizing my mood. She also explained that she would never prescribe ADHD medications to her clients with bipolar disorder unless they were and had been totally stable for a very long time and even then she would be extremely hesitant. She also explained that some people’s mania is manifest in the form of severe anxiety. None of what she told me was based on some small obscure study; this should have been information that my previous psychiatrist should have known. She immediately increased my mood stabilizer and after 6 long, painful months; I was able to experience some relief from the severe anxiety. In addition to helping me find some relief she took time to share a great deal of insight and education about bipolar medications. I walked away from that first appointment feeling incredibly grateful to my psychologist and to her. A month later, at my follow-up appointment, she sadly told me that she would no longer be able to see me; she was closing two of her three practices. I was devastated; I asked her for a referral, the pickings were slim, but she referred me to a psychiatrist with whom she had worked with about 30 years ago. Depending on the psychiatrist, it can take one to three months to get an appointment as a new patient. So about a month later, I saw my new psychiatrist. I explained my situation of the past year and why I had left the two previous psychiatrists. I also explained that I still needed help to stabilize my mood and address the other symptoms I was experiencing as repercussions from the ADHD medication trials. The first appointment seemed good and she seemed very compassionate about my situation. Her first suggestion was that I go off my antidepressant. (I will address this more in depth in a later post, but this was the long overdue acknowledgement by psychiatrists of the problem that I had experienced with Paxil). The new recommendation is to pull everyone with a bipolar disorder diagnosis off their antidepressants (or that is how some psychiatrists have interpreted it). So I stopped my antidepressant, which I had successfully been on for over 10 years. The next thing I knew I was starting to have panic attacks and reorganizing every cupboard and closet in my house. I have an anaphylactic allergy to cat dander, which is very challenging to work around. In addition to the reorganization of my house, I washed every single item of clothing in my closet and created a management of my indoor and outdoor clothing to further control the dander. This actually turned out to be a good idea, but in the midst of it, I realized that my OCD had leapt to a whole new level. Thanks to my psychologist, who keeps current on psychopharmaceuticals. I regained control of my OCD and panic attacks by going back on the antidepressant and instead started reducing it very slowly, which my psychiatrist thought was nonsense. In the meantime, she was busy having me try new mood stabilizers and other medications. I seemed to be getting worse and started to have new symptoms. Once again, I got the impression that she was not taking me seriously and thought I was “faking” either my symptoms or at least making them into something more than they were. In an inspired move, I asked a friend, who is a nurse to come to my next appointment. I initially asked her because I knew that my cognition and memory were not up to par and thought it wise to have someone else start coming to appointments with me. Later, I explained to my friend that I needed to address my concerns with my psychiatrist and needed moral support because I was concerned about her response. My friend met me in the office, we talked about my symptoms and that the most recent medication, which was, as the others, causing an increase in anxiety. Near the end of the appointment, I got up the courage to address my concern. I tried to explain my frustration and my friend tried to help as well. The result was more disastrous than I could have ever predicted, she asked me to leave her office and then as I walked down the hall crying, she shouted- “you don’t ever give the medications much of a try anyway!”. I am careful to keep my composure in public, but I was distraught and in tears. I stood out in the parking lot, with my friend, sobbing. To note, I am not an angry person, I rarely raise my voice and if I am upset I do not yell, I just start to cry. This was not an instance where a psychiatrist had a client who was acting inappropriately or threatening them. I went home and sobbed, I was feeling pretty hopeless; here I was barely functioning with increased anxiety and social anxiety and my trained medical providers were not only not helpful, they were leaving me distraught. As terrible as this experience was, I thought about how much worse it could have been for someone else who may have been suicidal, who did not have a friend or who did not have the support system that I did. The results could have been not just traumatic, but much worse, even potentially deadly. I was having so many memory and sleep problems at this point, I finally gave up trying to set appointments with my psychologist; I was falling asleep for hours during the day and unable to recall things from moment to moment even with reminders. I continued to do poorly emotionally, but this ongoing emotional state and so many setbacks seemed to be affecting the rest of my body. As usual, a very bad incident resulted in my finally getting the help I needed. I had stopped all the new medications my psychiatrist had been giving me and stuck with the originals. However, I continued to very slowly reduce my antidepressant. One day, I woke up in the night incredibly angry, I don’t recall ever feeling so angry in my life. It was quite terrifying, I tried all the behavioral things I knew- music, meditation, writing, exercise, etc. Nothing helped, I was not only full of anger, I began to feel scared, not that I would do something dangerous, but because I could not figure out how to regain control. It was also such a terrifying feeling because it was completely unfamiliar to me. Don’t get me wrong, I get angry-- PMS, my ex-husband, drivers who cut me off, co-workers, bosses, bullies--fairly typical stuff. However, this was on a whole new level. The only thing left to do was pray, I spent the entire night unable to sleep and battling this anger. I pled to my Father in Heaven for help all night. I was exhausted, but still unable to sleep, in the morning, in an effort to try to distract myself, I decided to respond to email. I have a friend who has bipolar disorder; she has battled with it for her entire life and has many more years of experience. However, I don’t think of her, as my friend with bipolar, in fact most of the time I never think of it. That morning, I needed to respond to an overdue email from her. She immediately responded back. When I realized she was at home, I called her. She asked how I was doing, I told her about the awful night I had had and this terrible anger; she immediately responded, I know what you are talking about. I am not a doctor, but I would suggest you take an extra dose of your mood stabilizer. I had never done that nor thought to do it; I was certainly desperate and figured it was worth a try. I hung up and took the extra dose; almost immediately I relaxed and fell asleep. I slept for hours. I don’t recall if the anger went away completely, but it was no longer causing me serious problems. About two weeks later, I finally set and remembered to go to an appointment with my psychologist. He and I spoke about all the things I had been going through. When I told him about the anger, he immediately knew why it happened. He asked me how quickly I was reducing my antidepressant; I told him and he said that I was reducing it much too fast. He said he had clients who had experienced the same thing when reducing the same antidepressant too quickly. Currently, I am waiting to see a new psychiatrist (it takes three months to get an appointment with her). I am very optimistic because I recently returned to the PCP who I had been seeing 10 years ago when I was diagnosed and who had worked so closely with my psychiatrist; he is the one who recommended her. He knows and has worked with this psychiatrist for years. In the meantime, he can prescribe the medications that I need. In a later post I will address, in more depth, the antidepressant I was reducing, Effexor XR. On my own, I eventually made the decision to stop reducing it. I went back to my original dose- it made a significant difference and helped restore hope that my life was going to improve. As always, thank you for taking the time to read this post and please feel free to comment or contact me. If you have read my previous posts, you are now aware that they are very lengthy. I am trying to write in the most authentic way possible and this is how it comes out- in a lot of detail. Hopefully, the patience of wading through it is worthwhile. Thank you for continuing to share this blog with others, it is my greatest hope that my experiences will help someone. For many years I had a love hate relationship with therapy. Over time, I have recognized how valuable my therapists/counselors/psychologists have been and are. I started therapy when I was 18 years old, my first appointment was traumatic. As you might imagine, talking with a therapist was that last thing a person like myself would choose to do. I had purposely chosen to never confide in anyone about anything of real depth, including my feelings of depression and severe anxiety about daily functioning in life. My life was about survival, my survival was private. The therapist I saw was through LDS family services, a service provided by the church in which I was and am a member. I met with my therapist, a middle aged woman. I was uncomfortable throughout the appointment, but at the end, she gave me a hug. That did not work for me, some people are comforted by hugs, but I was not the hugging type and certainly not with a stranger who I didn’t want spend time with. I think I saw this woman every week for several months, but I can’t recall. What I do recall is, after each appointment, I would drive to a nearby park and sit in my car and cry. I was angry, depressed and scared of my future. In the 80’s there was so much stigma around mental illness. People didn’t talk about depression, there was no Google or blogs to try to help a person understand. I had significant trust issues, so even if there had been support through some association, like NAMI, I did not want anyone to know anything about what was going on inside of me- not my family, not some support group, not friends.
I stuck with therapy although it was painful; I have wondered why I kept doing something that was so painful. I now know that there was a faint flicker of hope that my life could improve. I don’t recall feeling hope, but it must of been there because I kept going to therapy. I started seeing another therapist when I went off to college, I don’t recall much, but I did feel more comfortable with him than the first one. A couple of years later, I transferred schools and moved back home. I started seeing another one and so on. I moved a lot so I have seen a variety of therapists over the years. There are three particular ones who stand out. After marrying and moving to a small college town, with my husband, I started seeing a counselor on campus. This was a very tough time for me, I was in school, which, as I noted was extremely difficult for me. I was also pregnant and was probably suffering the most severe depression I had suffered up to that point. I attribute much of that to hormone changes, but of course that didn’t make it any less painful. My counselor was very nice, but it was again terrifically difficult. The challenge with her was, in the 50 minutes that I spent in her office, she would only speak for about 5 minutes. That meant I had to fill 45 minutes, for a person who tried to not to talk much, it was awful. I once told her, I hate coming to see you, it brings all sorts of painful things to the surface, which takes about a week for me to recover from and then I come back here again and repeat the same thing. However, I kept going and made progress, very slowly, over the next 4 years. After a about a 5 year break, following a divorce and returning to work, I returned to this same college to complete my last two semesters. I was able to see my same counselor again. This was wonderful, until the day that I was called by the office and told that my appointment had been cancelled. They wouldn’t give me any other information. I went to the office later that week and found that my counselor had killed herself. I was her only client because she was the director and was no longer seeing clients. When I returned to school she said she would be happy to see me again. This was a tough situation, but luckily I had progressed in my ability to speak up, I scolded the office for not following up with me and started seeing a new counselor, who was very good and helpful in working through the situation. The second most significant therapist was a psychologist I had in Boston. I had taken a job out there following my graduation, I knew no one and unfortunately there were many triggers that helped land me on short-term disability and in a pretty bad psychological state. The main stressor with my job was that I was in a small department, 3 other co-workers and my boss. One of my co-workers, who sat next to me, refused to speak to me - ever- not even hello. She also refused to teach me any of the things that I needed to know to do some of my job. It was very upsetting to me, along with other factors in my life. After, a few weeks of spending every lunch hour crying in my car, I decided I had better find a therapist. I started seeing a social worker, but as my depression worsened, she referred me to a psychologist at Mclean hospital (at the time, one of the top mental health hospitals in the country). I met with the psychologist for a couple of weeks and she was great, but she kept trying to talk me into going into a program. I had promised myself that I would never do any kind of group therapy, it was awful enough to do it privately (still so much stigma). She couched the program into something she thought I would swallow- I do not hold it against her because it helped me finally get a proper diagnosis. I started a “partial hospitalized” program. I attended a program at the hospital a few hours everyday for three weeks. This was all out patient. It was basically a series of classes along with one on one cognitive behavioral therapy work with a psychologist. As I was sitting in a class one afternoon, I heard something that changed my life. The instructor said, antidepressants prescribed to someone with a bipolar tendency may cause a manic reaction. He then went on to describe some of the classic behaviors of mania. It was a profound moment, I finally understood what had happened that year I had been prescribed Paxil. I was seeing a psychiatrist at the hospital, I spoke with him about this new information. We discussed it for quite some time, the question was- why did I only have one manic episode, although it appeared to have lasted for months. Did I really have bipolar? We went back and forth, while trying to find a new antidepressant for me. Later, I will talk more about my medication situation, but suffice it to say, when we couldn’t find a good antidepressant, I said, OK, let’s just treat me with the medications that you would use to treat someone with bipolar. It took some time, but low and behold, we eventually struck gold. It was a quite a cocktail, but it was life changing. Not the kind of life changing that the mania gave me, but it was a giant step towards feeling better able to live a functional life. One of the most noticeable things was that I suddenly had “common sense”, all those times people said, “that is just common sense”, I finally saw it. Well, as usual, this is a long post, but as noted, I have one more psychologist who had and still has a significant impact in my life. I have been seeing him for about 3 years. I chose him because he was close to my work, but it was more than a random choice, as he has helped me through another psychological crash. He is a psychologist with a Ph.D and he keeps abreast not only his field, but attends pharmacology conferences and is up on the latest information for antipsychotic medications. Since the majority of his patients are on medications and there are side effects and challenges of changing medications, etc. he feels that he can provide the best care by being well versed in these medications. This turned out to be a tremendous blessing when my psychiatrist introduced a new medication that undid my bipolar medications. It was again, one of the more hopeless years I have had. For some people, especially those of us who have been on our medications for years, adding a medication that may destabilize mood can have serious repercussions. Essentially, your brain gets “scrambled”. It unplugs all the connections that you had working smoothly and the wires get tangled; it can take months to recover from and sometimes you have to start all over finding a new cocktail of medications. This is what I have been going through for the past year and a half and it has been awful! I completely give credit to my psychologist for providing the information that my psychiatrists should have known so I could start to advocating for myself. As you can see, my journey through, now almost 30 years of therapists, has been ultimately very helpful, but it was torture for many years. Now I tell myself, keep a therapist in your back pocket so that when things get rough, you already have help waiting. It has been a good plan for me. As always, I hope that something in my story is helpful, hopeful or educational. I would love to hear your comments or questions, please feel free to leave one. |
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