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    Community Voices

    Vacation

    I have a 14 year old black Labrador. She has a ton of benign tumors and arthritis and joint pain. She sleeps most days away. She will be staying home alone while we go on vacation for 10 days. The dog sitter will be by 3 or 4 times per day. I trust the dog sitter, but I still feel badly leaving her. I mean, she sleeps 247, so she won't miss us much, but it's really getting my anxiety up there. I want to enjoy my vacation, not constantly be concerned about her. (Yes we have cameras and I can see her and dog sitter.)

    14 people are talking about this
    B.L. Acker

    Dealing With Mental Illness as a Newlywed During the Pandemic

    People often say that when a couple gets married, they have their whole life ahead of them. That first year following the nuptials is often a flurry of excitement and monumental life changes. Often, the honeymoon period is kicked off with a trip to celebrate. For many newlyweds, there’s the prospect of new houses, new babies, perhaps even new jobs or new pets. Getting married for most people kickstarts an exciting new chapter of life. However, in my husband and my first year together as a married couple, we barely did more than survive. Due in part to the pandemic, and in part lack of finances, we never had a honeymoon. The only traveling we’ve done in our first year of marriage was to and from doctors’ appointments. There were no new homes, new babies, new pets or new jobs to signify and celebrate our new roles as husband and wife. Beyond filling out extra paperwork and putting on rings, our lives barely changed at all. Since we’ve gotten married, all we’ve really done in the last year was continue to survive. My husband and I are both currently considered disabled. In all honesty, both of us having that designation was one of the only reasons we were able to actually get married. If only one of us were disabled, tying the knot would have jeopardized my much needed health coverage. Up until he received his disability diagnosis as well, we were one of many couples in this country who could not afford to get married without putting my coverage at risk. Few allowances are made for couples where only one spouse is disabled — usually the marriage penalties are too steep unless both partners are disabled. My husband has bipolar disorder and post-traumatic stress disorder (PTSD), as well as multiple painful physical issues related to past injuries. I have major depression, generalized anxiety disorder, PTSD, and two benign tumors on my brain. Between the two of us, we have a lot of bad days where one or both of us struggle to even get out of bed. Some days I cry — a lot. There are a lot of days where one or both of us withdraw from the world because everything outside our home feels too overwhelming to face. Due to our disability statuses, finances are ridiculously tight. The paltry amount we receive for disability assistance, supplemented by periodic small sums for my writing, never seem to be quite enough to make ends meet. I clip coupons and shop sales religiously, yet we regularly fight to keep our heads above water. While in theory getting jobs would ease our financial struggles, it would also mean losing the disability coverage we’ve both fought so hard to achieve. Even beyond that, we both know that honestly we’re in no place mentally to work right now. Neither one of us is reliable enough right now to adhere to any semblance of a set schedule, even on a part-time basis. We both struggle with depression so bad that there are days we can’t even pull ourselves out of bed.  Though our depression comes in waves and some days are better than others, we never know when those really low days are going to hit or even how long they will last. Employers tend not to want an employee they can’t count on to be there from one day to the next, whose availability is spotty at best, and is likely to change on the drop of a dime for undetermined, unpredictable periods of time. I do sporadic freelance writing when I can in order to earn a little extra money, but even that is unsteady and unreliable because I am unable to write regularly due to my mental health struggles. I’ve resigned myself to doing what I can when I can, and forgiving myself for all that I cannot do at this time. We have a lot of days we have fondly nicknamed “F*** it” days, where we are both struggling so badly that we know our chances of any possible productivity is low. We’ve had many days we’ve microwaved TV dinners, heated up frozen pizzas, or had other minimal effort meals on TV trays while curled up on the couch together or on lap trays in bed. It isn’t that I don’t know how to cook. I actually enjoy cooking and baking when I am up to doing it. There are just many days I am physically, mentally and emotionally not up to the task. So we’ve learned to adapt together and throw together minimal effort meals on those days when we are not capable of doing more. Most days there are dishes in the sink and laundry piled up waiting to be washed. There are times it takes days before we make it into the shower. Sometimes it takes days or even a week to brace and prepare myself to do even the simplest of tasks like making phone calls or running errands. Depression isn’t pretty and it isn’t easy. Some days it takes hours before we’re even able to pull ourselves out of bed to pee. Most of this past year we took one day at a time, sometimes even one hour at a time, plodding through life moment by moment, just trying to survive. There have been times I have wondered whether I might have made his life harder by becoming his wife, and I’m sure he has pondered the same about being my husband. But at the same time, we give each other more compassion, empathy, understanding, love and support than either of us had ever received prior to reconnecting with each other. In each other, we have found everything we never realized we needed and everything we could ever want in a partner. I have never before felt so heard or understood. We may have done little more than survive together this last year as newlyweds, but there is nobody else I would ever want at my side. I know the idea of going through an entire year just surviving might sound pretty sad and pathetic, but for us it was monumental. We survived. That’s huge for us. We fought an ongoing, daily battle with huge monsters on our backs and lived to tell the tale for another year. And more importantly, we did it together as husband and wife. It may not have been the exciting first year that many newlyweds get, but we got through our first year together. We survived! If any of you made it through the past year — if all you did was survive — I’m proud of you. You’re still here! That’s huge! We’re all doing our best to get through life however we can, doing our best when possible, even if our best some days is just treading water. Whatever you can do is enough. Just keep plodding on, day by day, minute by minute if you have to. And know there are others out there, like my husband and I, who understand and empathize, and are cheering you on along the way.

    Kathi Hunter

    Cowden Syndrome Facts: What to Know

    If you’ve read my story with having two cancers in four years, you’ll know that after having my first cancer, I found out I have Cowden syndrome. If you ask the average person, they’ll likely tell you they’ve never heard of it. So, here’s a reminder. Cowden syndrome is also called PTEN Hamartoma syndrome. Your PTEN gene is your tumor inhibitor gene. It causes growths, benign tumors, skin tags, thyroid goiters, hamartomas, vascular issues, enlarged heads, and puts you at risk for many cancers. Once diagnosed, your doctor will want to refer to many specialists who will want to watch you closely to make sure you don’t develop cancer — or if it does come around, it’s caught early. As someone who has dealt with this for going on four years now, here are five things I want people to know about Cowden syndrome. Every year, I go through what I like to call “testing season.” My skin is checked for anything suspicious. My thyroid is scanned via ultrasound. I used to get mammograms, but then I went and got breast cancer. I have colonoscopies. (I had 37 polyps this time around, and my doctor feels I need to do them every year now. My soul is still weeping at this news.) This period of my life is something I live with, but it’s not easy. If you’re a cancer survivor, think of your three, six, yearly check-ups, but done all at the same time. It’s something we have learned to live with, but anxiety during this time is real. Testing season is exhausting, but the alternative — getting a third cancer and not finding it before I need chemotherapy or radiation, or God forbid, it kills me — is much worse. It’s not unusual for people to remove parts of their body to avoid getting cancer. I know people who have had preventative mastectomies, hysterectomies, even thyroidectomies because they did not want cancer. I used to think this was extreme; why go through surgery if you don’t need to? But now, after having undergone so many tests and being watched so closely in the name of preventing a third cancer, I see why some people take this measure. Sometimes, the lesser of two evils, removing a body part to make sure you don’t have to face a cancer diagnosis, is the best choice. Hamartomas are not the same thing as blackheads. As a teen, I thought I had an excessive amount of blackheads on my forehead, nose and parts of my cheeks. I later discovered they were hamartomas. They don’t go away, no matter how hard you wash your face, scrub it, or pick at them. My dermatologist has even said burning them away is pointless, they just grow back. Not everyone has “bad skin.” Sometimes, they’re dealing with something much more complicated. Cowden feels like the gift that never stops giving you gifts that you cannot give back. I have had a goiter in my thyroid since I was 22. I have pretended I was the earth, and the skin tags that invaded my neck, under my breasts and legs were the trees, sprouting up throughout my body as a way to deal with all of these skin tags for years now. I have had two cancers because of Cowden, and some days I am overwhelmed because I keep thinking about the possibilities of what will happen next. Next year my thyroid comes out because the nodules are still growing, and starting to cause problems. No cancer is there — but thanks to Cowden, it’s still growing. The last thing I want you to know about Cowden syndrome? It exists. Those of us who have it exist. Back in 1978, when I was born, no one knew about Cowden syndrome, and my doctors were so perplexed they referred to my large head and numerous issues as “Kathi Hunter syndrome”. The more we talk about this condition, the more people will see it and maybe go get tested. The more doctors will learn so they can improve how they treat their patients.So, there you have it. Cowden syndrome. It’s real, it’s out there, and it affects more people than you realize.

    Community Voices

    I have had two cancers in four years. I might get more.

    Four years ago, I was diagnosed with endometrial cancer. I was 36. I’m 40 now. I remember the shock I felt. My gynecologist had just told me a week before she didn’t think it was possible I had endometrial cancer, after all, “I was too young.”

    About four weeks later, I was having a complete hysterectomy that later revealed that my cancer had spread into my cervix, my fallopian tubes, into one ovary, and into my lymphatic tissue. I did three sessions of chemotherapy, then 28 external pelvic radiations and then three more sessions of chemotherapy. I finished treatment March 2016. Now, almost four years post finishing my treatment, things are still great. My last checkup I was told everything looked healthy and good.

    Me shortly after going bald for the first time. Do you see the relief in my face?

    Shortly after treatment ended, I was talked into genetic testing by the physicians assistant for my oncologist. “Don’t you want to figure out why you got cancer?” she said. Reluctantly, I agreed. I thought for sure it would come back negative.

    “Good news! You are not BRCA positive. But you do have Cowden’s Syndrome.”

    Cowden’s Syndrome is also called PTEN Hamartoma Syndrome. It is a mutation of the PTEN gene. The PTEN gene is your tumor inhibitor gene. It causes multiple benign tumors (called hamartomas) all over your body, an enlarged head, goiters in the thyroid, skin tags, and puts you more at risk for certain cancer, like breast, endometrial, colon, rectal, thyroid, and melanoma.

    It was like so many things regarding my medical history that I had wondered about for ages finally made sense. My big head could be explained. The goiter I’ve had for almost twenty years, lodged firmly in my thyroid, explained. The weird bumps and skin tags that never seemed to go away, despite my best efforts? Explained. I was no longer a mystery, things made sense.

    They went through the list of cancer I was at the most risk for. Endometrial was at the top of the list. Next was breast. I was advised I had a 77 percent chance I would have breast cancer before I was 70. Then thyroid, colon, and skin. I asked what all this meant, and they said that I would have to be tested every year. Breasts would be tested twice a year. I would have to rotate every six months between a MRI and a mammogram. I would need to start annual colonoscopies. I would need to see a dermatologist for skin checks.

    I began the annual testing. My life began feeling like I was just waiting for the moment where I would be told I would have to repeat the hardest nine months I’ve ever had to go through. It took me at least two years (two rounds of tests) before I finally accepted that this was just something I was going to have to deal with. This is my new normal. Living, working, breathing — but also doing everything I can to make sure that if cancer wants to pay another visit, it doesn’t stay for long.

    Fast forward to May of 2019. I had been putting off my mammogram/MRI cycle. I had no symptoms to indicate that I had an issue, so instead of going and just getting it over with, I waited. Finally, upon the insistence of my Mother, I went. I thought for sure this would be like the others, that I could go, get my boobs squished, and leave.

    Well, you know what they say about assumptions.

    I was diagnosed with DCIS, or DCIS, early June of 2019. DCIS is an early, non invasive form of breast cancer. Typically DCIS, depending on the stage and grade, requires either a lumpectomy along with radiation or for those that wish it, a mastectomy for treatment. No chemotherapy.

    Now, the thought of radiation again, even on a different body part, made me nauseous. The thought of having a lumpectomy and then potentially, needing to do this all over again with a recurrence made me feel even worse. If I was going to do this, then I was going to go for the most aggressive treatment option. I was going to do this and decrease my chance of recurrence down as low as possible.

    I decided on a bilateral mastectomy, along with sentinel lymph node biopsy. My surgery was seven weeks ago today, on August 7th.

    Now, I’m a fat woman. I had big boobs. I didn’t like them. They sagged. They were in the way. I thought losing them would be fine, because the most important part was that I do everything possible to make sure I did not have to repeat this process again later.

    I remember the first time I looked at my chest after the surgery. I cried. I cried because my boobs had been replaced by a mess of bruising, swelling, staples and drains. It took me a good month before I could shower without crying because I couldn’t stand how I looked. Today, the swelling is mostly gone, the drains and staples took a hike weeks ago, and I am still adjusting to my new body shape. Reconstruction was not an option because my surgeon does not do reconstruction with mastectomies, so I went into this knowing I would be “flat” for awhile, if not permanently.

    Me after getting my drains and staples removed.

    I am back to work post surgery. My risk of recurrence for breast cancer has gone down to less than one percent, so body issues aside, I made the right choice for me regarding my treatment. I go to physical therapy once a week to work on getting my range of motion back to where it was pre-surgery, and it improves every day. I am trying to get back to a place where I feel reasonably okay with how I look. Some days are better than others, but I’ll get there. I beat two cancer in four years, and let me say this here so I can come back to this when I am feeling low — I beat two cancer in four years, so I can do anything.

    My annual Cowden’s Syndrome tests have started, and unfortunately I’ll be going for a biopsy for my thyroid in about two weeks. Three of the nodules in my goiter that I have had for about twenty years now are growing per the ultrasound I had two weeks ago, and my endocrinologist and I both feel a more aggressive approach in monitoring them is needed. So yes, I’m still trying to shut the door on one cancer only to have the possibility of needing to open another door. I am nervous for the possibility, but am choosing to cross that bridge when I get to it.

    Right now I’m just a Kathi who is trying to find her place in a post cancer world while hoping I don’t have to go back to the having cancer world.

    Community Voices

    My Experience Befriend with Dysthymia Disorder

    Before I begin this writing. I’d like to remind you that I write this not in order to blame or accuse anyone who are involved in this story because what happen to me is something that I should handle by myself. I’d also like to remind that this writing will openly share about my personal history and personal struggles dealing with my #Depression including my past and my #Suicide attempt. I write this in order to increase the awareness towards mental illness and also to wipe off the stigma and prejudice about mental illness in Indonesia. I write this not as a teacher, not as a writer but as human being who needs help.

    Also, another reason I write this because I’m honestly afraid that I can end up killing myself someday.

    Here I go,

    Hi, my name is Bhakti Satrio Nugroho. I’m 24 years old and I currently live in Purwokerto, Central Java, Indonesia. I studied English when I was in college. I work as an English teacher, amateur writer and also freelance translator. However, I’m currently jobless but I still have couple part time jobs for living.

    I have good life as person. I don’t come from wealthy family but I have good family, wonderful parents, lovely 6 years old brother, and relatives. But honestly, I don’t feel close with my parents because they have dysfunctional relationship towards each other. I also have amazing friends in my hometown and my college. The last one is probably the best friendship I’ve ever had but I don’t want to compare them with others. We call ourselves as “Elite 12”. They support me when I’m down. However, of course as someone who has mental illness. Somehow I still struggle to be grateful with those.

    I was diagnosed with dysthymia a couple months ago but I suspect it had begun since my childhood. Now, it has been part of my life and my personality. I mean, the way people judge and know me.

    Since I was a child, I have closed personality. I don’t say that I’m introvert but when I’m hanging out with friends. I usually feel alone, no matter how funny the situation is. As a child, I lived far away from my parents. They worked as labors in China Taipei for more than 8 years. I lived with grandparents for years. Even though they support me financially but I never had parent figure as I wanted when I was a child.

    As a Moslem child, I never had exact lessons about being Moslem from my family. They just sent me to the teacher after my school. They never did prayer and fasting like any other Moslem family. My family is little bit complicated to be explained. My mother’s family was actually Christian. My late grandfather was a communist party leader who ran away after G30S/PKI movement. He faked his identity after that movement and started a new life. When I was a child, he taught me a lot about being Christian rather than being Moslem. On the other hand, my father’s family was Moslem family but they tended to close with mystical things which we usually called as Kejawen. Long story short, when I was child, I never had strong faith as Moslem. I ate blood, pork and also snake even though those are forbidden in Islam. But, that’s what my family taught me.

    Then, finally it comes to my depression part.

    During my junior high, I began to know new things in my life including the good ones and the bad ones. As a teenager who lived without parent’s guidance, who also lived in village environment, I began to lie. In order to fulfil my curiosity as teenager and also to blend in with my friends, I used my allowance to buy cigarette and, the worst part of all, to buy drugs. Not even my parents know about this yet. Since this moment, my life became darker than I used to know. I skipped many classes only to gather with my friends. Fortunately, I could past the exam to go to high school.

    During my high school, I began to stop smoking and using drugs. For some reasons I was able to stop from those behaviors even though some of my friends couldn’t do that. However, life doesn’t really feel like it used to. I began to isolate myself from my friends and my family. My life just attended classes and went home. I spent a lot of my high school time in my bedroom rather than being active. I became more closed personality than I was. Until now, I only have few friends from high school. At that time, I felt different with others. My experience of low self-esteem and self-worth begin. It continues and worsens till I went to the college.

    College period was one of the happiest periods in my live. I met a lot of influencers in my life including my teachers and my friends. It seemed like I finally could begin my new life. However, in this certain time, I also had problems with the way I should behave.

    A couple semesters before my graduation, I became a subject of bully. It’s not that kind of bully. It was just part of joking. I’m sure that it was part of our friendship. I became a laughing stock among my friends. However, sometimes the jokes went too far which also dealing with my personal appearance. At this point, my personal way of thinking shifted into something way worse than before. I begin to look down at myself. My low self-worth and self-esteem issues started haunting me again. I didn’t know how to begin a conversation. It’s like being social awkward, social creep, social outcast and loser. Sometimes I feel I am not good enough only to blend with everyone I know, especially women. I also didn’t know how to talk about my feeling to everyone because I didn’t know what it was. At that time, I began to isolate myself again because expressing feeling throughout social media only makes my friends named me as Drama King. Because they think that I was too sensitive and just looked for attention.

    Until came to the part that I was rejected by woman that I love and had malignant tumor at the same time. Since this moment, my dysthymia symptoms are getting worse than ever. These were really bumping me down. I lose her as a woman that I love but as a good friend as well. The fact that everything that I did for her only makes her feel embarrassed is something deeply hurtful to remember. But well, I never hate her and she deserves someone way better than me. I wish the best for her.

    Meanwhile, my tumors were really hard to handle. They grew back no matter how many times I remove them. I underwent five surgeries for this. Fortunately, some of them are benign tumors so I just leave them there as long as they are not malignant tumors.

    My moods change every hour a day like rollercoaster. Form excitement to sadness, form happiest to worst. I no longer enjoy gaming and reading. I lose passion towards something I used to like. I felt “not good enough” and worried about myself everywhere I go because of rejection feeling and physical pain that I had. It was not only a broken heart feeling but it also triggered my depression into something way worse than before. The way she avoids and rejects me sometime just unacceptable for me. Those thoughts are always on and on in my head. At this point, my exaggerated thoughts turned into this chronic depression.

    I feel like I don’t live. I just exist.

    One night after my third surgery. I was alone in a hospital. Nobody visited me at those nights. I really wanted to say to my friends that I need a help but I had no one to talk too. Since then I thought that my life wasn’t worth for living. After I went home, I started to abuse many medicines I had, to numb my pains, from broken heart, malignant tumor, dysfunctional family things etc. and of course to slowly commit suicide. I woke up in serious condition. I was in heavy tremble, heavy breath, low heartbeat, and paralyzed. However, Alhamdulillah. God was there to save my life. I’ve learned that that’s not the way world works. It was a huge lesson in my life and I hope I never do it again.

    Being dysthymic is something that unexplainable. I mean, you know that you are different with others, socially and mentally. You know that you’re in trouble but somehow you don’t know what is it, how you should handle it and where you should ask for a help.

    Having someone to talk to only make yourself being avoided because they will probably think that you are just weird, abnormal, over-melancholy, bad listener, stubborn, childish and crybaby. As a result, I lose a friend who I considered as my family because I vented and overshared to her even though no matter how hard I try to be more positive. It was one of my biggest regrets in my life. But I never blame her or anyone because I don’t know how to deal with myself as well. It was my fault, I snapped.

    For me, the heaviest part of being dysthymic is when I keep losing my friends because they wanted to help but they finally had enough. I’m also worried if I openly say that I have mental illness, they probably think that I’m crazy and start avoiding me one by one.

    I just don’t want to be alone. I want to have normal life like others too.

    Well, I have a lot of things to do now in order to bounce back from this mood disorder and my tumorous cells problem. Trying to stop beating myself up over this whole saga and focus on putting back the pieces of my life together. I know that there are a lot of factors as to why things don’t work out, but I deserve to have a life like normal people too. Start being grateful even though dysthymia makes me hard to do that.

    And last but not least, trying to stop blaming anyone and focus how to manage and understand towards all of my problems. Thich Nhat Hanh in his book entitled At Home in the World: Stories and Essential Teachings from a Monk’s Life says,

    “When you plant lettuce, if it does not grow well, you don’t blame the lettuce. You look into the reasons it is not doing well. It may need fertilizer, or more water, or less sun. You never blame the lettuce. Yet if we have problems with our friends or our family, we blame the other person. But if we know how to take care of them, they will grow well, like lettuce. Blaming has no positive effect at all, nor does trying to persuade using reason and arguments. That is my experience. No blame, no reasoning, no argument, just understanding. If you understand, and you show that you understand, you can love, and the situation will change.”

    I can only say sorry for all of my friends for being too negative, and being this kind of weird to be friend with. Especially for those whom I have an argument with and now avoid me. I never blame or hate you for this. I’m trying my best but I just don’t know how my brain and my heart work that way sometimes. Yes, now this dysthymia maybe has become my personality. I might feel sad all the time but that doesn’t mean I can’t also be happy. I have wonderful people around me.

    After all, I’m not a famous figure. I’m just an English teacher who lives in third world country and I’m just an amateur writer who also wants to share his experience and good fortune about #MentalHealth with the world. I wish someday I could say these words below in front my family, my friends and everyone without being discriminated and avoided.

    “My name is Bhakti Satrio Nugroho, I live with chronic depression, and I am not ashamed.”

    Thank you for listening to me, and please be kind to each other.

    Community Voices

    My newfound superpower

    “If you could have any superpower what would it be?” Answers to this question usually include things like flying, invisibility, mind reading, or x-ray vision. The definition of a superpower basically says that it is an imaginary superhuman power. I think that it’s time to change the meaning, or at least be able to apply it to everyday people and their everyday abilities. There are super humans all around us that don’t get the recognition: black women, women that don’t experience uterine cramps, people that “just don’t like ice cream,” or people out there working and grocery shopping with one kidney or one lung. 16 days ago I found out that my body creates way too much spinal fluid and I have decided that this is my superpower.

    I used to get migraines when I was a teenager. They were hormonal and would usually show up right before a period and take me out for a day or two. My mom and sisters got them too. I stopped getting them sometime in my twenties and I think I have only had a handful of them since then. I am now the sexy age of 39, and about eight weeks ago I started getting recurring and consistent headaches, but I didn’t want to call them migraines because they presented differently. Instead of being one sided with that pulsating/throbbing feeling and light sensitivity, they were more generalized. My whole head hurt and would worsen through the day. I had nausea too, so it made me think it was something else. Everyone kept joking that I was pregnant. I kept saying that was impossible because I have had the Mirena IUD in for a few years now. I take medication for acid reflux and have had the meds stop working and end up with headaches and nausea, so I decided to self treat and change my meds. It seemed to help and I went on with my life. Then the headaches returned. I had a #Headache for seven days in a row before I went to see my primary doctor.

    I am a nurse. Sometimes it takes our friends to pester us to go to the doctor. In this situation it happened to be my boss, Brenda. I had just submitted my resignation, was in my final days of work, and was suffering the headaches. I tried working through them; I would leave early after wearing sunglasses at my desk and cringing through every conversation because my head throbbed with each word that came out of my mouth. She asked a few times why I didn’t go to the doctor and then it turned into, “when are you seeing your doctor?” I went to the doctor on a Friday. (Brenda’s superpower is making people go to the doctor.)

    My primary doctor is pretty rad. I even told him once that he was great for two reasons: he listens to me and he does not fat shame. He started laughing and asked what I meant. I explained what fat shaming was in the medical world and how so many of my friends or people I have interacted with online have horror stories of doctors fat shaming (think of going to the doctor with pneumonia and being told you have to lose weight before they even listen to your lungs or read this story about a woman that recently died from #Cancer and her dying wish is that women advocate for their health and refuse to accept that fat is their only health problem). He was horrified and said he was sorry that anyone experienced that. Anyway, he was unavailable, but I got to see another doctor in his office that I also adore. She is so great that at one point I tried to transfer my care to her – she is every damn thing you want in a doctor: kind, thorough, available, and relatable. Also a woman – hello! She examined me and tried to get a good look at my eyes. She asked if it worsened when I leaned over and I said that yes, I had just dropped something on the way in and when I bent over to pick it up, I thought my brain was going to fall out of my skull. She suggested treating it like a #Migraine, even though it was not presenting that way, and that it was very important that I follow up with an eye doctor. She had concerns about benign tumors behind my eyes, at least that is what I thought that I had heard. She gave me Imitrex, a popular migraine drug, and told me to take one a day for three days. She said to call her after I saw the eye doctor.

    I tried to get into the eye doctor right after leaving her office, but they could not fit me in for a week. I took an appointment for the following Friday. In the meantime, I followed the instructions with the Imitrex and the headache went away. I was feeling good again. I made it through the weekend, worked my last few days and was looking forward to having time off with my boyfriend before starting my new job. We had a trip planned up in wine country and had rented a house with a pool and a hot tub and just wanted to do nothing. So we were going to run errands, get ready for the trip, and go to the eye doctor before our vacation.

    I knew that they were going to dilate my eyes, so he drove me to the appointment. I was hoping it would be quick and we could grab some lunch afterward. The doctor was nice and started the vision test. I don’t remember at what point during the exam this happened, but he said that I had to go to the emergency room after he did a few more tests. He said that he saw bilateral papilledema (swelling of the optic nerves in both eyes). He said it was mild, that all of my vision tests were totally fine, but based on my headaches and this, I had to go get a brain scan and possibly a lumbar puncture.

    Do you know what a lumbar puncture (LP) is? It is a spinal tap. Do you know what a spinal tap is? It is when a medical professional sticks a needle in the lower part of your spine to collect some of your cerebrospinal fluid. I was NOT PUMPED to have this happen especially because I had been a part of these procedures before as a nurse and the patients either scream or cry during it and then feel extremely ill with the “worst headache ever” for days.

    We went to the UCLA Ronald Reagan ER with some pictures of my eyeballs.

    I saw a lot of residents, a few interns, a few doctors, and some nurses. We were there for 11 hours. I got a CT of my brain to rule out an actual tumor (which can cause papilledema) and then was told I had to have the LP. I told the resident that 1) I was terrified because of my experience as a nurse 2) I did not want one at all, and when he assured me that he had done plenty, I asked 3) have you performed them on fat patients, though? See, the tricky thing about doing them is that sometimes it is very difficult to find the right spot. And the risk for injuries are pretty lengthy including brain herniation and hemorrhaging. He did not answer my question, but sorta laughed it off. I inquired about having it done by Interventional Radiology (IR), which everyone that has had them say it is so much better when done in IR. They use a scanner to guide them to ensure the needle goes to the right space on the first try. He said due to time constraints it would be best for him to try. I asked for anti-#Anxiety medicine and he obliged.

    I was asked to put on a gown and the nurse that brought it to me was lovely. I do not know where he went to get it, but it actually fit. I commented on that and he laughed and said, “girl, it’s an extra small!” (Roxane Gay recently talked about her experience at UCLA while getting weight loss surgery and the gown did not fit, maybe her story caused them to buy some other sizes?) They set everything up and I was asked to lie on my side. He was looking at my back and said to hold on, that he was going to have someone else take a look to confirm placement. The woman, who I did not see, but assume was the attending, came in and laughed after looking and said, “no.” She left and he asked me to sit up and told me that he could not do it (yay) and that we would have to schedule an appointment with IR (boo). I said, “aren’t they here now?” and he ran to check. He came back and said nobody was in to perform it, but they paged someone who was on their way.

    The IR LP went well. It took about 20 minutes for them to prep everything while I laid face-down on a table under the scanner, and the procedure itself was maybe 5 minutes. The LP itself is best described as weird. I just felt the initial poke for the anesthetic and then it was like someone was rooting around inside. The doctor was lovely and from Canada. He was shocked that I recognized his accent and that usually people in California assumed he was from there. (The guy was all “aboot” and “you’re welcome” so I have no clue how this would ever happen.) He said, “I am taking aboot 8 mL of fluid and your pressure is a little elevated – I am getting 35.”

    QUICK SCIENCE LESSON: Our brain is in our skull which is connected to our spinal cord which is inside the spine. Our brain makes cerebrospinal fluid (CSF) and that is in both the skull and spinal cavity. CSF protects our brain in a bunch of ways, including keeping our brain buoyant so that it can take a hit a little easier, and removing waste from our brain.

    The resident told me that the diagnosis was “#IdiopathicIntracranialHypertension.” They said that I would be given Diamox (medication), to start taking 1000 mg, that weight loss was necessary, and that neurology would contact me on Monday to set up appointments and that they would be increasing the dose of the Diamox. I said that we were going on vacation on Monday – was that okay? He said yes, as long as we were not flying.

    As you can imagine, being a research nurse, I have been using my logins on every medical site to find any piece of information that I can and have found support groups and a research foundation for this diagnosis. Here are some major points:

    Idiopathic intracranial hypertension (IIH) is a disorder and the words literally mean, “we don’t know why but you have high pressure within your skull.”

    It used to be called #PseudotumorCerebri (false tumor) or #BenignIntracranialHypertension. (Patients and the research foundation really dislike the old names because they imply that this is benign or not a big deal.)

    It is rare, but incidence is on the rise.

    Partial or total vision loss is the worst complication.

    Treatment options are very limited and cause a lot of side effects. Some folks end up with a shunt or two.

    The largest study thus far focused on weight and therefore EVERY DAMN LINK will tell you that weight is the culprit and if you lose weight, you will be cured. The support groups will tell you otherwise as they include patients that aren’t overweight at all, patients that were forced to have weight loss surgery now have worsening symptoms and have lost their vision, or patients that did not lose any weight but are in remission. (This being said, some folks report good results with losing weight too – the safe guess is that IT IS ALL A FUCKING GUESSING GAME BECAUSE NOBODY KNOWS ANYTHING).

    There is a pending class action lawsuit against the IUD that is currently in my uterus for this very disease. It is a crap shoot since the thought is that any hormones can cause this, but I signed up.

    The days following the ER visit have been complete torture. Remember that I was feeling totally fine, I had no issues and went in for what I thought was going to be a regular ol’ eye exam and ended up in the ER where MY SPINE WAS ASSAULTED. I actually went back to the ER two days later because I took aspirin unknowingly and because of the major alert warning of potential interaction with the new meds, I was told to come back. I was okay, but had a not so friendly run-in with someone demanding I put on a gown that did not fit. Then I suffered a tiny CSF leak from the LP so I had the worst headache of my life that was totally fine if I laid completely flat, but was so bad the second I moved that I legit thought I was dying and/or wanted to die. We canceled our vacation. I was on bed rest for two days. I started to feel better. Then the side effects of the Diamox kicked in. I am so dizzy it feels like I am constantly spinning, but not visually, just my body. Spinning like on a merry-go-round or riding the waves on a shitty ass boat. This is not any better when I have to run to the bathroom for the diarrhea that it has also #blessed me with, and surely not any better when I try to sit up like a functioning adult and eat something not in a horizontal position.

    I saw a Nurse Practitioner in the neuro department on Friday. She is pretty awful. Her bedside manner can be described as argumentative at best. At one point she told me to calm down and it felt like my eyeballs got as big as my head because I was trying to determine what would happen if I just kicked her and walked out. A doctor knocked on the door and asked to talk to her and while she stepped out my boyfriend calmly asked me, “how do you think this is going?” She basically gave me two options: space the doses apart so instead of taking two doses of 500, take four doses of 250 OR remove one of the 250 doses and see her husband (don’t ask) in ophthalmology right after to ensure I wasn’t causing more harm to my vision. We went with option one and it did nothing and now I am sorta doing option two. Today I took 250 in the morning and haven’t taken anything else because I felt awful.

    Tomorrow I am supposed to start a new job. It begins with a two-day orientation that is all day, sitting in an auditorium, with the exception of a walking tour. Currently I am typing this while laying down because sitting up is near impossible and walking is out of the fucking question. I need the job for money, obviously, but also my insurance with my last job ends on September 1. I am sure that my current provider has paid thousands of dollars so far for just the first week of the diagnosis, and so I need insurance.

    I am nine days into this diagnosis and feel overwhelmed, terrified, depressed, frustrated, and enraged. I have a new superpower and it comes with a ton of drama. Although, I guess flying would have to cause some other drama too – it’s gotta be cold up there and I bet birds fucking hate you. At least I get to lay down a lot and not piss off the feathered ones.

    Community Voices

    Living Large through the Uncertainty of Rare Disease

    “I refuse to let her world be small.  I refuse to let her world be small. I refuse to let her world be small.”

    I chanted rhythmically in my head as I heaved her eight-year-old body and the 50 pound oversized medical stroller through the rough hiking terrain; she alternately squeed in delight and grabbed on for dear life as I struggled over rocks, roots, and various forest detritus. There was a chill in the air as the sun’s beams struggled to stretch through the canopy above and reach us below in the shadowy underbrush.

    We were going to catch up with the group in spite of the clear lack of handicap accessibility, my #Anxiety around taking a child who just had a www.epilepsy.com/learn/challenges-epilepsy/seizure-emergenci... two weeks ago into a remote wooded area, and the school’s hesitance to take her on the field trip.  Because, the only other answer would be to stay home and live scared of what could happen.I refuse to live in fear; I refuse to teach her to live in fear.  I refuse to let fear make her world small.

    The current state of the world calls us to live in fear.  We live in a seemingly terrifying time.  Week after week the walls of terror close in–shootings happen in www.cnn.com/2013/07/19/us/colorado-theater-shooting-fast-fac...www.cnn.com/2018/03/02/us/school-shootings-2018-list-trnd/index.htmlwnep.com/2017/06/08/victims-shooter-identified-in-weis-marke...www.motherjones.com/politics/2012/12/mass-shootings-mother-j...www.nytimes.com/2018/10/27/us/mass-shootings-church-synagogu...www.cnn.com/2017/05/03/world/terrorist-attacks-by-vehicle-fa... against the pedestrian;  a murder happens in www.nytimes.com/2018/10/29/us/north-carolina-school-shooting.htmland it doesn’t stop at death because even religionnews.com/2018/07/17/theyre-still-here-the-curious-ev....

    Hate crimes happen with alarming frequency.  In one week alone occurred crimes occurred that killed two people at a www.cnn.com/2018/10/29/us/kroger-shooting-hate-crime/index.html in Kentucky and eleven at a www.cnn.com/2018/10/28/us/pittsburgh-synagogue-shooting-vict...in the Squirrel Hill section of Pittsburg.  There is fear that surrounds us and fear that arises with in us; it whispers to us and demands we hunker down and fortify against potential attack.  Fear calls us to protect ourselves from others and those who we view as potential threats.Terror forces us to make our world small.  To live small; to think small; to be small.I refuse to let my world be small.

    I refuse to live small; I refuse to be small; I refuse to think small.I refuse to let the external climate of the times frighten me into submission. There is too much at stake.  My children are at stake; our children are at stake.

    Our daughter was born with a terrorist within.  A rare genetic disorder, #TuberousSclerosisComplexwww.tsalliance.org/about-tsc/what-is-tsc  TSC causes benign tumors to grow in her vital organs, #Epilepsy, autism, and an endless list of other medical complications can occur across her lifetime.  It breeds fear and uncertainty; it steals any sense of safety and security for our daughter and for us, as her parents, raising her.  The goal of every terrorist is to make his/her victim’s world small and frightening.  TSC is different than a terrorist in there is no why and it has no goals, nevertheless there was a time it made our world very small and terrifying.TSC made our world small until I looked into the eyes of our daughter and saw past the terrorist, faced the primal fear of losing her, and reconnected to the love that drives the all encompassing horror of potential loss.

    The underbelly of the beast remains and the only difference is that I approach it with love and steadfast resolve:  I refuse to teach her to live in fear; I refuse to live in fear; I refuse to make our world small.

    The lesson is universal, whether the terrorist is inside one’s self or in the world at large.  There is fear and uncertainty across the spectrum–from terminal illness, to mental illness, to #ChronicIllness; to hate groups, divisive political groups, or the threat of lone criminals.  There will always be things in life in which we have an utter and complete lack of control.

    The solution is acceptance of the very fact that we do not have control of everything.  It is to stare in the face of our fears and look past the terror to the wealth of pure humanity and love that remains in this world.  It is to embrace life and scream to the world:

    I refuse to live in fear.  I refuse to live small; I refuse to think small; I refuse to be small.  I refuse to let my world be small.

    I embrace life with love.

    Dawn Shaw

    Facial Reconstructive Surgery: Is Any Improvement Better Than No Improvement?

    When it comes to facial reconstructive surgery, it’s not like I can just say “please put it all back” if I am unhappy with the result. When the producer of “Body Bizarre,” the show that shot a segment about me to air later this year, asked me if I’d be willing to do a consultation with a surgeon regarding facial reconstructive surgery, I was reluctant. But curiosity quickly got the better of me. A little back story: I was born with a benign but fast-growing tumor that threatened my airway. It was deeply embedded, so removing it meant taking out bone, nerve and muscle as well, leaving the left half of my face paralyzed. I had a number of reconstructive and cosmetic surgeries during my youth. It’s been 29 years since my last facial reconstructive surgery. I quit having them because when I was 21, the one I had went terribly wrong. I woke up in intensive care with a tube down my throat that was holding my airway open so it wouldn’t swell shut. After that horrific experience, I determined that the infinitesimal improvements made by each procedure did not justify the physical and emotional cost. Therefore, I needed to accept my appearance as it was and move on with my life. Over the intervening years, I’ve learned not only to accept but also embrace how I look. But medical science has advanced and I am always open to discussion, so at the behest of the TV show, the appointment was set up. The producer had done some research, and the surgeon I was to see came highly recommended. There were six of us in the tiny examining room that day: me, my husband Ian, the surgeon, his associate, their intern and the videographer from the TV show. After some poking and prodding, demonstrations of movement (or lack thereof) in my face and shoulders, and a lot of discussion, the surgeon made his recommendations. His first option involved a pretty major procedure. [Paraphrasing] “We would take a muscle from your thigh and transplant it to the left side of your face.” I was quick to interject. “Well, you’d have to take it from the right thigh because they’ve already taken one from the left thigh. But then at least both sides would match!” “We’d have to connect it to a working muscle in order to animate it,” he continued, “and since the masseter muscle on that side is missing, we would have to use one in either your neck or shoulder.” “Um, so what you’re saying is that I’d have to shrug my shoulders to smile?” “At first, yes, but by doing exercises and training the muscle over time, most of our patients are able to activate it automatically. They no longer have to consciously shrug — it becomes more involuntary. Here, let me show you what it would look like.” With that, he positioned me in front of a mirror, stood behind me and gently pulled up the left lip. It made my mouth rounder in its relaxed state, but all I could see was that my front teeth were fully exposed and prominent. I did not say this aloud, but I thought to myself: So basically there would be a gaping hole in my right thigh, I’d have to shrug my shoulders to smile and I’d look like a woodchuck. Plus it is a six-hour procedure and would keep me in the hospital for approximately four days. Add to that a significant recovery time with limited ability to take care of my horses, let alone ride. “I really think it would be a great improvement for you,” the surgeon insisted. “It would not only improve symmetry, but would really improve your speech and your ability to eat.” My speech is fine… and I really don’t get how it will improve my eating since it won’t add teeth or improve connectivity on the left side. But that’s just it. The surgeon has the ideology lots of people seem have — that any improvement is better than no improvement. If it can be done, then it should be done, and he sincerely believes he’d be doing great things for me. I’ve had a number of people suggest to me that additional surgery can really “help” me, sometimes even giving me the name of a surgeon I should contact. As stated in my new book, “Facial Shift, Adjusting to an Altered Appearance,” people don’t understand it can take just an infinitesimal amount of asymmetry for it to be noticeable that someone is “different.” The degree of difference matters little. I’ve opted out of this particular procedure. It’s too invasive, and the outcome too nebulous. Most significantly, the thought of it fills me with dread, not optimism. If I were 16, I might well go for it. In fact, up until the surgery at age 21, I went along with doing surgeries because I understood this was the thing to do. Until the one nearly killed me, I never gave much thought to stopping. Now, however, as I near age 50, I’m used to this face in the mirror. I don’t want to look in the mirror and not see me, or worse yet, a face that looks worse, not better. It’s not like I can just say “please put it all back” if I am unhappy with the result. I am not opposed to the concept of surgery, especially if it can improve something that causes discomfort or fixes something that might cause potential problems in the future. In fact, I have elected to go ahead with the surgeon’s second option, which is a much less extensive procedure. My left eye doesn’t close all the way, so it gets dry and irritated. It tears up, often dripping down my face. While I do not seem to have a problem with eye infections, that is certainly a possibility, increasingly so as I get older. The surgeon will take a tendon from my wrist and use that to pull up the sagging lid below my left eye. He will then insert a gold weight in my upper eyelid. When I expressed concern that it would pull my eyelid down, he said the muscle that keeps the eye open is working, so that won’t be an issue. The hope is that by bringing the lower lid up and weighing the upper lid down, the two would more effectively meet, allowing more protection for the eye. What it will not do is restore my ability to blink that eye. It helped my decision that this is a two-hour outpatient procedure. The worst part will likely be the incision in my wrist, for which I’ll have to lay off horse handling and horse chores for two to three weeks. I hope it works, but after all the surgeries that failed to meet expectations, I’m not overly emotionally invested. But I figured if it makes my eye more comfortable and causes less irritation and dripping, it’s worth a shot. My takeaway is that it’s OK to be OK with who you are and how you look. Anything you doundertake should be for yourself and no one else. The procedure involving my eye may slightly improve my appearance. But I don’t really care about that. Follow this journey on Facing Up to It.