Katie Golden

@katie-golden | contributor
Katie had her first migraine attack at age five. Right before her 30th birthday, she had an attack that hasn’t stopped, she is always dealing with some level of pain. Unable to work in her beloved career, she found purpose in writing about her struggles and triumphs in her ongoing migraine journey. Her personal mission is to “Live a Fulfilled Life with Chronic Migraine and Pain.” Katie is passionate about education, breaking the stigma and raising awareness of the effects that migraine disease has on the person as well as those who love them. In 2013, she joined the writing team at Migraine.com, the largest online migraine community, which reaches 500,000 people weekly through all social media outlets. In 2017, Katie began her own blog, Golden Graine. She has also written for Pain Pathways Magazine, The INvisible Project, US Pain Foundation, The Mighty, The National Pain Report, Medium.com, and XOJane. Katie is a member of the American Headache and Migraine Alliance (AHMA), National Headache Foundation and a proud Ambassador and Advocate for the US Pain Foundation. She’s been on several patient panels about “Patient Centered Clinical Trials” and met with pharmaceutical companies who want to understand the patient perspective. Katie supports the efforts of Miles for Migraine (including running her first 5K last year) and has created an opportunity for advocates to commune together during the annual Headache on the Hill event. A native of West Virginia, Katie moved in 2016 from Washington, DC to Santa Monica, CA. She credits her amazing support system with giving her the drive and energy to tackle the issues of migraine head on.
Katie Golden

Why Being Disabled Is a Full-Time Job for Many People

*************************SEEKING APPLICANTS************************* Job Title Chief Medical Officer of Personal Health Affairs (AKA Social Security Disability Beneficiary) Job Description Full-time position, flexible hours. Prerequisite : Ideal candidate would have a background in all of the following areas: analytics, accounting, patient advocacy, medical billing, insurance underwriting, legalese, pharmacology, healthcare administration, Social Security Disability, Medicare and Medicaid. Preference for those with M.D., Ph.D., CPA, RN, NP or Esq. after their name. Skills : The ideal candidate would be well organized, exhibit patience, possess a friendly phone manner, anticipate problems, show initiative, diligent in finding correct answers and keep meticulous notes. Job Duties May Include: Schedule, prep and arrange transportation for 1-3 doctors’ visits per month. To include compiling a list of questions, a list of medications, changes in symptoms and providing medical records from other healthcare providers Interpret insurance policies and medical billing codes Reconcile medical bills Track payments toward deductibles Inquire about incorrect medical or insurance bills Fill out paperwork proving disability 3-6 times per year Coordinate medical records between doctors, insurance, and disability carriers Research medical conditions and make recommendations for changes to treatment plans Keep up with latest medical advancements Understand health care legislation Ability to multi-task while being on hold for hours on the phone Excellent note-taking skills Spend an abnormal amount of time at the pharmacy Develop and implement a plan for organizing medication Willing to be a medical guinea pig Ability to educate others Must be able to face stigma, prejudice, patient-blaming, accusations of being a drug addict, labeled as lazy, being fired by doctors, lose friends and miss important events *Candidate must be able to perform these functions regardless of, and in spite of, his or her health condition at any given time.*Candidate is also expected to maintain all household duties such as cleaning, laundry, cooking, parenting and managing relationships.*No training is available for employees.*If you are unable to perform your duties, you must nominate a loved one to take over your duties.*Inability to master all of these skills can result in loss of benefits, health insurance and access to care. Salary Candidate will only receive insurance benefits and compensation if he/she is able to complete the tasks above. Lapse in attention to these details could result in loss of benefits. Sick days and vacation days will not be offered, however candidates will be able to work from home. Are you qualified for this job? Chief Medical Officer of Personal Health Affairs is a title befitting for those who are applying for or are maintaining Social Security Disability benefits. There are 8.8 million Americans employed in this job, with another 2 million having applied with no response or are actively appealing a denial. No one could ever be prepared to perform all of the job duties listed above, but we don’t have a choice. No one ever grows up saying, “I want to be disabled.” Some people go to school for multiple years to master just one of the dozens of areas we have to learn as a trial by fire. The description and prerequisites are not an exaggeration of the skills needed to effectively manage the Social Security Disability system. Having an accounting degree, a background in law, and a medical license would be the right combination of a perfect candidate. Being disabled can be a full-time job. The amount of time it takes to stay on top of your health and keep up with paperwork while often feeling the worst you ever have in your life can be all-consuming. The next time you hear that those on Social Security Disability are “milking the system,” or we “need to take ownership of our health,” remember that for many, being disabled is a full-time job. And we are some of the hardest working people you may know. We want to hear your story. Become a Mighty contributor here. Thinkstock photo by iStock.

Katie Golden

Describing My Typical Day With Chronic Illness to Social Security

It’s always scary to get an envelope in the mail from the Social Security Disability office. Recently, one of those showed up in my mailbox. It was time to recertify my disability. It’s been three years since I was awarded benefits. The Social Security Administration has the following guidelines on when and how often someone would be asked to recertify their condition: If medical improvement is: “Expected,” your case will normally be reviewed within six to 18 months after your benefits start. “Possible,” your case will normally be reviewed no sooner than three years. “Not expected,” your case will normally be reviewed no sooner than seven years. I fit into the “Possible” category. I rely on these benefits and can’t afford to miss anything in this process. I spent countless hours gathering up all the information I had so there would be no doubt my chronic migraine disease was still stopping me from being able to have a “regular” job or lead a “regular” life. Out of everything that was asked of me, I found answering this question to be the most important. “Describe what you do in a typical day.” But our days aren’t typical, are they? Here was my reply. Describe what you do in a typical day. I do not have “typical days” anymore. I have low, medium, or high pain days. I have functioning, semi-functioning or debilitating days. With chronic migraine disease, I am never able to fully escape the pain as it is an everyday occurrence. My day depends on how intense the pain is and for how long. I will illustrate how my days vary widely and without any warning. I make adjustments to my schedule throughout the day depending on the intensity of the symptoms which I experience daily on varying levels. These symptoms include head pain, aphasia, allodynia, fatigue, phonophobia, photophobia, impaired cognitive dysfunction, nausea, akathisia and visual aura. Low Pain / Functioning Days – When I wake up around 9 or 10 am with a pain level 3-4, I know this is the best I am going to feel all day. I am most productive for about an hour after waking up. I eat breakfast, usually yogurt and fruit. I take a handful of medication, both prescribed and over-the-counter, just to maintain a tolerable pain level. I respond to emails and check the daily news. I may take some time to write, a practice that has become helpful to me in dealing with my illness. I also take this time to make doctor’s appointments and deal with insurance issues, which is a never-ending battle. Even on good days, if I do any housework I usually only focus on one area of my one-bedroom apartment, as this can be exhausting. During the day, my pain level spikes around 6-8, which forces me to take a nap for an hour or two mid-day. When I wake up, the pain has decreased slightly to about a 5. I try to get in some form of exercise every day after napping. That may be taking a 30-minute walk, going to a yoga class or going on a bike ride. After one of these activities, I usually shower for the day. On a good day, I am able to run some errands, which I usually break up throughout the week in order to not increase my pain. The grocery store and laundry are two tasks that generally wear me down. While eating healthy is part of my life, making dinner can be challenging. I spend little time making dinner and my partner often helps in making meals and with clean-up.I spend the evening watching TV, however, my pain increases and I become fidgety. With newly diagnosed restless leg syndrome and periodic limb movement disorder, I find it very hard to sit still. Even with medications to manage the full-body, uncontrollable twitching and jerking movements, nighttime is very hard for me. The head pain generally spikes as well back up to a 7 or 8, making getting to sleep difficult. I take another handful of medication to prevent worsening migraine attacks and to control the symptoms for the next day. High Pain / Debilitating Days –  I try to stick to a normal sleep schedule so I wake up between 9 and 10 a.m. I eat breakfast depending on how nauseous I am. On these days, leaving the house, driving and exercise are out of the question. It is rare that my symptoms improve throughout the day; they typically get worse even when using rescue medication. Some of the medications I take to cut down the pain and inflammation on high pain/debilitating days cause side effects that make me sleepy. That, coupled with the excruciating pain, cause me to spend the majority of the day in bed. I spend little time on the internet or watching TV. I use sleep as a coping mechanism. Even while sleeping, my body is tensed up to battle the pain. I curl into a ball to protect myself and often find fingernail marks in my palms because I’ve been clenching my fists while I was asleep. I also grind my teeth and need to wear a mouth guard. During long stretches of time with high levels of pain, my sleep cycle is interrupted, my food intake is altered, showering is a chore and my body feels like it has been beaten up. I can be in this state for days, weeks or even months at a time. I rarely see friends or spend time outside when this happens. It can take weeks to build my strength back up. Summary I spend 80 percent of my time in my apartment. The 20 percent I try to venture out has to be carefully planned out. Will there be any noise, lighting, food or other triggers that will make the migraine attacks worse? I have to take medication before I leave and have all medications with me for any possible scenario when I leave the house. I need an exit strategy. Will I be able to lie down if the pain is suddenly unbearable? Do I have a way home if I feel I can’t drive? Will my impaired cognitive function cause me to become disoriented, forgetful, or lost? I always carry a notebook with me because I can easily forget my tasks or what people tell me. I build in extra time because any task now takes me twice as long to complete. I have a small radius (about five miles) around my house where I am comfortable going by myself. Anywhere outside of my comfort zone, I prefer to have someone with me no matter what my pain level is that day. These questions and considerations dictate my “typical day.” Follow this journey on Golden Graine. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by Jacob Lund.

Katie Golden

15 Pieces of Advice From a 'Professional Patient'

My business card says “professional patient.” I get so many questions about this. What does that mean exactly? To me, I have acquired skills and knowledge that healthy people don’t always have. Having chronic migraine and pain has exposed me to situations that many others never have to face. When your health turns suddenly, a lot comes at you quickly. Questions you never thought about before come to your mind. What are my treatment options? What if I can’t work? Which insurance plan is the best for me now? Where can I find support? How do I fill out this mound of paperwork, go to doctors’ appointments, keep my job and run my household at the same time? I’ve been there. I’m still there. I should get some credit for the battle scars I have earned since becoming chronic, and the term “professional patient” just seemed appropriate. I had to not only go through the grieving process of a dramatic change in my life, but I was hit with having to navigate a complex medical system. As a professional patient, I have learned the following lessons. By no means do I excel at all of these! Just thought I’d share observations I’ve had over the years: 1. Understand if your employer offers short-term or long-term disability benefits. If not, it is so important to cover yourself. You never know when illness can strike. 2. You are your own best advocate. 3. Go into an appointment armed with information and questions. 4. Research your disease or condition until you feel like an expert. 5. If you feel like you know more than your doctor, it’s time to find a new doctor. Never be afraid to get a second opinion. 6. Find support, whether through online communities, in-person support groups or therapy. You don’t have to go through this alone. 7. Ask for help when you need it, it’s a sign of strength, not weakness. 8. Don’t ever let anyone tell you it’s “all in your head.” 9. Educate the ones you love about your disease so they can understand how to help you. 10. Plan ahead as much as you can so that if you are too ill you have backup plans. This is easier said than done and something I need to work on, but I know it’s important! 11. Be persistent with doctor’s offices, medical billing, and insurance companies. Become a squeaky wheel. It sucks that we have to do this to get answers. However, inaction can create serious financial distress in the long run. 12. The approval process for Social Security Disability is a nightmare. Get an attorney or advocacy group to help you through the process. Keep meticulous records and be incredibly detailed in describing your daily struggles. Send them a mountain of evidence that can’t be ignored. 13. Review your insurance options every year. How much did you spend out of pocket last year? Would switching to a new plan save you money? Are your doctors covered? 14. Exercise in whatever shape or form you can. Chair yoga, gentle stretching, walking. It can help you to heal faster and teach you to listen to your body. 15. Lastly, your disease does not need to define you. Find things that still make you happy. I know how incredibly difficult each and every one of these points is to put into practice. I struggle every day. Sometimes I’m really good about following up on insurance questions, but I put exercise on the back-burner. I still feel bad about missing events, but I try not to let it consume me. I’m never done researching and learning about my disease and I’m open to evaluating new or even experimental treatments. Having to face these complex issues makes us all professional patients. It’s daunting, it’s overwhelming plus you’re sick. Give yourself some credit for managing each day the best you can. Why are you a professional patient? Follow this journey on Golden Graine. We want to hear your story. Become a Mighty contributor here . Thinkstock Image By: jujustr

Katie Golden

Why I Wear Makeup When I Go to the Hospital for Migraines

Four-inch heels, power suits, cocktail dresses, regular hair and nail maintenance and appropriate make-up. That was me in the professional world. Client meetings, networking events and charity functions. They all require the professional look. I already looked younger than I was, so I used my wardrobe to prove my legitimacy. I actually met with a prospective client who assumed I was a summer intern. My hair was pulled back, I wore a blazer over my new J. Crew dress and had a stack of papers prepared for our meeting. Yet he questioned my abilities. I looked at him, very seriously. I told him I had been in banking for 10 years and was the youngest employee at my company to become a vice president. It didn’t take long in that meeting for him to realize that I knew what I was talking about. We did many deals together over the years. I’ll be honest, I’m a serious girly-girl. I loved playing dress-up as a kid in my grandmother’s costume jewelry and makeup. I got involved in community theater at a young age, which only fed my love of dressing up. Then I got sidelined with chronic migraines. Soon, my clients started asking if I was OK. Or commented that I looked nice but seemed to be in pain due to my pale pallor. I slowly revealed to my clients what I was going through and they were very sympathetic… as long as I got the work done. I used makeup to perk up my face. To put on the appearance of being OK. Some people could tell under the makeup and business suit that I was not OK, while I could easily fool others. Over the course of two years, the pain overtook my body and I couldn’t work anymore. Heartbreaking. I vowed to not stay at home in the same clothes for days. I’d shower and wear makeup every day. I wanted my daily routine to stay as close as it could to what my normal life had been. (It’s a good aspiration, but I don’t beat myself up when it doesn’t happen!) As I searched for answers, I began to notice that doctors reacted differently to me depending on my attire. I wouldn’t show up in a full business suit, but if my jeans and T-shirt were clean, my hair blow-dried and an appropriate amount of makeup on, I got more attention. If I came in sweatpants and a hoodie with no makeup on, I found I wasn’t taken as seriously. Or I looked like I was seeking drugs. I was confused. Looking “normal” got their attention, but arriving in shambles due to the intense pain set off alarm bells. Shouldn’t they see the “real” me? One time I went into the ER looking like death warmed over. I knew exactly what drugs I needed that would help me to get out of this bad migraine attack. The doctor did not take me seriously. I was scolded on the use of opioids, a medication prescribed by my doctor that I had never misused. No relief was offered except 800 mg of Tylenol. Apparently, I looked like I was seeking drugs and was quickly dismissed. *** I wrote the section above years ago during my first inpatient ketamine stay. It was a planned five-day visit. I remember packing my makeup bag. My reasons? Vanity. Sanity. Normalcy. To be taken seriously. At this point, my docs knew and trusted me, but the four other departments that were involved in my care have never met me before. If I didn’t have a polished look would they take me seriously? Six hospitalizations later and I wash my face every morning and slap on the most basic makeup so that I can feel better about myself. I’m lucky if I get one shower while I’m there. Thanks, dry shampoo! I’m not as vain as I used to be due to the pure energy it takes just to look presentable either at home or in the hospital. I’m more comfortable now with my looks and body in general, which translates into interactions with medical professionals. At the hospital, the pain team knows me, I’ve had the same nurses multiple times and I have a strong relationship with my doctors. It’s horrible that we have to be strategic about our appearances to feel like we’ll be taken seriously. This goes hand-in-hand with the stigma I try so hard to work against and this occurs within the medical community, who still don’t understand migraine disease. How do your doctors react to you and do you feel it is related to your appearance rather than the stack of evidence and questions you have? This blog was originally published on Golden Graine. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by Design Pics