Lana Koehler

@lanakoehler | contributor
I’m an author, speaker, blogger, former music teacher, wife, mother, grandmother, and autoimmune overcomer. Contact me at www.lanakoehler.com.
Lana Koehler

3 Things Doctors Never Told Me About Arthritis Pain

I have inflammatory arthritis and I’ve seen a lot of doctors concerning my chronic pain. I think that I have a specialist for every part of my body and my respect for the medical profession is monumental. And yet, sometimes, I’m sure I frustrate them as much as they frustrate me. I once had a doctor who made me promise to walk 30 minutes every day. He stared into my eyes until I said that I would do it. Really? Did he think I didn’t want to exercise every day? Did he not hear me when I said that the arthritis pain has been getting worse? I felt guilty as I left his office, knowing that there was no way I would be able to keep my promise. Needless to say, he’s no longer a part of my medical team. And, yes, I look at those I put my trust in as part of my team. Just like any football or baseball team, each player on my team has a purpose. And, just like any sports team, I want to win! Sometimes, I’ve had to think outside the medical box in order complete my mission. I’m willing to pursue help anywhere I can find it and I’ve found it in some of the most unusual places. I’d like to share some of the results of my quest. Here are three things my doctor never told me about pain: 1. Medications may not be the only answer. OK, truthfully, they’ve usually been my first line of defense. But as time went on and their ability to cut the pain decreased, I needed to look into other options. I have access to top-notch medical care. After a little research, I went to a local pain management program. It was there that I learned about meditation, mindfulness, yoga, acupuncture, heat/cold therapies, herbal supplements, and regular massage. I met others who were going through similar pain issues. I was able to try out all of the above without commitment to any one. And some of them have worked out better for me than any medication I can take. 2. I don’t have to do it alone. As “the mom”, I always thought that I had to take care of everyone. The hardest part has been giving up control and allowing my family to take care of me. They’ve been great about making sure I’m comfortable. I can do as much or as little as I’m able and I know that everything will be OK. Friends have offered to bring me meals on some of my most difficult days. In the past, I turned them down out of misplaced pride. Now I happily accept their help to make my day easier. And it’s surprising how much I enjoy their brief visit when they stop by. For many people, having someone clean their house is a luxury. For me, it’s a necessity. The sacrifice to afford it pays dividends in my sanity, serenity, and pain level. Again, I don’t have to do it all alone. 3. I am in control of my life. So many times in my life I have felt out of control. The multiple doctors’ appointments, the painsomnia, and the discomfort of every day living, have long controlled whether or not I was having a good day. And out of control usually means more pain. While I can’t always control the circumstances in life, what I have finally realized is that I can control my outlook on life. While I can’t change what’s happening to me, I can change my attitude toward what’s happening. I can choose to be grateful and I can choose to be happy. Or I can choose to be miserable. It’s my choice. I am in control. I use my doctors now as medical consultants. I take what they say as suggestions for my medical care. However, in the end, it’s on me. My life is what I make it. I must choose wisely. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by CentralITAlliance

Community Voices

My achy stiff neck is killing me today.
Been hurting for three days and not getting better. CBD roll-on doesn't work, neither do lidocaine patches.

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Tessa Hearth

Finding Self-Worth in Life With a Chronic Illness

“But how will she earn her bread?” The voice on the other end of the phone asks my soon-to-be husband expectantly. The question surprised him, and he didn’t really know what to say. To him, it didn’t matter. But that question, casually thrown out by my soon-to-be in-law, echoed things buried deep down in my subconscious — although I would not realize it for many years. At this point in my life, I had quit my job in order to move in with my boyfriend. Distance and commute limitations dictated that I would have to find work somewhere closer to where I was now living, but I had not yet started working again. I expected to go back to work shortly, though we had already discussed that when we started having kids we both wanted me to be able to stay home with them, especially when they were small. Although I already had frequent pain and fatigue, at this point in my life I had no idea it wasn’t the norm. So I continued life as it was, with no consideration or thought to what the future would bring for me in regards to my health. We had children not too long after we got married. By the time our children were school age and I had an inclination to rejoin the workforce, my health had taken significant downturns and I had daily debilitating pain and fatigue with no answers. Like many of us here, I started to recognize that what I could do versus what others my age could do were drastically different, and in a world that is not very understanding of differences or disabilities I felt considerable and constant pressure to be doing more. In America, at least, there is very much the cultural mindset that your value is in your job. How much money do you bring in for the family? How many things do you do for others? I couldn’t say how true that is in other countries, but certainly, I have run into this mindset frequently in the United States. I grew up in a very demanding and abusive environment, where there was no room for failure, differences, disobedience, illness or self-worth. It was a grave sin to “raise yourself above others” and suffering was expected. The trauma experienced from my childhood had given me a very solid foundation of personal persecution and the inability to trust my own instincts, which had been systematically suppressed while growing up. This was added to when I started seeking medical care and was met with “You’re faking it” and the like. It was so easy to believe them. I’m just being dramatic. Nobody has pain every day. My instincts were telling me something was wrong, but I was woefully unprepared in skills, knowledge and self-confidence to listen to that instinct and act on it. Because on top of fighting doctors, I was fighting myself. That voice in my head that told me I had to keep going was enforced when I was told “push through” and would come out loudly. And often. When I couldn’t push through, or I had pushed through so long that the inevitable crash was debilitating for weeks, I laid there feeling useless. Worthless. Work was a distant memory. I feared that my husband would get sick of me always being sick and leave. I thought I was lazy, weak. I struggled with this for almost two more decades. I still struggle with it in many ways. It took two years of weekly therapy to even begin to realize that my sense of self-worth was so low because I put on such a good front I could fool even myself sometimes. I was taught that acknowledging your own skills and intelligence was vanity.  It was a weird shift when I started seeing the things that my family and friends would tell me about myself. That I am intelligent, and what’s more, I’ve learned to wield that intelligence expertly. This in itself has given me confidence in a lot of areas that were lacking before. That I am kind, at least to others. I’m working on being kinder to myself. That I am absolutely not lazy, but instead have limitations that many people don’t have to think about or understand. And that not all strength is obvious. That the things I am able to do for my family are enough, even though there is always more that needs to get done. That’s just life. There will always be more things to do. I don’t have to break myself for others in order to be loved or valued. That I’m a good writer. Writing articles for The Mighty has helped build my confidence, and I am about to start a project that has been a long time coming, which will hopefully lead to me having a book published. Hopefully more than one, eventually! This has been a dream of mine for a very long time. That I’m a great patient advocate, and I’ve learned to use those skills for myself. I learned them for my daughter, and a few years ago had that light bulb moment where I realized I didn’t apply those skills to myself and started going, “And why don’t I?” Once I realized that, it changed my entire approach to how I manage my health care. Part of the process of recognizing my value outside of the things I do for others was building trust in my instincts. Instincts that had been trampled through childhood, then trampled by the health care system I was in for 15 years as an adult. Turns out, my instincts are often spot on. It hasn’t changed the fact that I hurt every day. It hasn’t changed that I am always tired. I still have lupus, Sjogren’s, fibromyalgia, chronic headaches, spine issues and more, or that I now work too much for the state of my health. But it’s allowed me to stop when I have to with less guilt, and hopefully, eventually, that will be with no guilt. That in itself has made my pain better because I am much better about not just pushing through until I crash for weeks (though it still happens). I take time off now just for the sake of having time off, since we all know that time off due to crashes is not restful or pleasant. It also takes a lot of mental energy to beat oneself up. I had to find an equilibrium within myself that allowed me to see these things and really start to feel them. It’s not a process I would have been able to do by myself. But I can say that finding a sense of self-worth and confidence in myself, even though it is still a work in progress, has been one of the most positive changes in my life.  That question of “But how will she earn her bread?” no longer represents the way I think about myself. Remember this — Your illness does not define you. While it dictates many things in our lives, remember that you have value because of who you are.

Community Voices
Community Voices

Can anyone recommend cute but comfortable shoes for Rheumatoid Arthritis?

I’ve had Rheumatoid Arthritis for 12 years and my feet and ankles are only getting worse. Can people please reccomend comfortable but stylish shoes that they have found to bring some comfort?! I’ve been looking at Stegmann’s, Clark’s, Dansko etc. I just don’t want to buy an expensive pair if they won’t be comfortable enough. Thank you! #RheumatoidArthritis #Fibromyaliga

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Jessica

Yes, I'm Fat and Disabled

“Hi! My name is Jess, I’m 22 years old. I’m fat and disabled.” There’s a sentence you don’t see every day, and probably for good reason. Most people don’t feel the need to start a conversation by announcing these facts. However, sometimes, when people stare at me for parking in disabled spots or using mobility aids I feel that I need to explain and justify myself. You see, I have chronic fatigue syndrome (also known as CFS or myalgic encephalomyelitis). Due to my CFS, I often find I don’t have the energy to cook, so takeout food is ordered most nights. Post-exertional malaise means working out is often not an option. I’m trying my best to get a handle on this, but it’s not easy. I’m sure many of my other chronic fatigue crusaders struggle with the same. My weight gain has caused my anxiety to skyrocket, but a recent situation made me really think. I was on a train home from a work meeting. I was too embarrassed to use my cane in public (rookie error) and instead struggled on without it. I found an empty carriage, but after finding the first few steps in difficult, I plonked myself in the disabled seats. A few stops down the line a couple enter the carriage, they stare at me angrily before sitting down in two of the many empty seats. Then starts the not-so-hushed conversation: “ She doesn’t need that seat at all. How disgusting.” “ I know, she’s just fat.” There we have it ladies and gents. I couldn’t possibly need my disabled seat because I’m fat… This is when it hit me, whether I used the seats, parking spaces, and aids or not, I was going to be judged. As upset as I was, I vowed to myself to do what was best for me, and everyone else would have to deal with it. I wish this was as easy done as said, but we all know that it isn’t the case. I try my hardest and when people give me evil eyes for looking after my health, I try and tell myself that it says more about them than it does about me. So please, make it easier on all of us. Next time you see an overweight person struggling with their health, stop. Please don’t stare. When someone shares a “Walmart fail” of a plus size person falling out of their mobility scooter, please don’t share it. Just because someone is overweight does not diminish the fact that they’re disabled. Getty Image by Staras

Bernie Sanders' Campaign Plans for the Disability Community

The 2020 presidential election is now less than a year away, yet there are still many candidates — especially Democratic candidates — vying for your vote. Earlier in the election cycle, Lauren Appelbaum, vice president of communications for RespectAbility, pointed out that disability was hardly considered in most presidential campaigns, despite nearly 25% of the population living with a disability. Though candidates such as Andrew Yang, Pete Buttigieg and Julián Castro have since spoken up on the campaign trail for people with disabilities, Mighty contributor Brooks explained that people with disabilities shouldn’t be an after-thought during campaign season. Brooks wrote in the article, “To the 2020 Presidential Candidates, From a Voter With a Disability“: Presidential candidates should actively talk about and raise awareness of the plethora of issues those in the disability community face. You all should speak to us, get to know our stories, our hopes, our fears and our struggles. I believe America is at its best when everyone has a chance to contribute to his or her God-given potential. So this election, please don’t use us as mere photo props or as another talking point. The Mighty reached out to the leading Democratic presidential candidates and asked them to weigh in on some of the most pressing questions our disability, chronic illness and mental health communities wanted answers to on how they will prioritize accessibility, health care costs and mental health treatment. Sen. Bernie Sanders’ (D-Vt.) campaign was the first to respond to our interview request. Appelbaum pointed out that Sanders was the only candidate as of June to have a section of his website dedicated specifically to disability issues and, as Sanders’s explained in the responses to The Mighty’s questions, he has included the disability community in his plans for America’s health care. Here’s what Sanders’ presidential campaign had to say: How do you plan on lowering medical costs for people with disabilities and chronic illnesses? Bernie Sanders believes health care isn’t a privilege — it’s a human right. That’s why he’s always fought for Medicare for All, a single-payer program that will guarantee comprehensive health care coverage to everyone in America. Under our current broken system, 11 percent of people with disabilities are uninsured. One-third of adults with disabilities ages 18 to 44 skipped receiving the care they need because of cost. One-fourth of adults with disabilities did not have a check-up in the past year. Under Medicare for All, everyone is covered. There are no premiums, no co-pays, no deductibles, no networks, no surprise bills. Health care will be free at the point of service. Medicare for All ends the institutional bias in our system and provides home-and community-based long-term services and supports to all people without waitlists or asset or income restrictions as well as: Covers medical devices and assistive technologies. Ensures no one in America pays over $200 a year for the medicine they need by capping what Americans pay for prescription drugs. Bans Medicaid Estate Recovery. Provides transportation for individuals with disabilities to receive the care they need. Mental health care, under Medicare for All, will be free at the point of service, with no copayments or deductibles which can be a barrier to treatment. Require an evaluation of health disparities, including geographic disparities, and a plan for addressing the disparities found in the evaluation. And create an Office of Primary Health to figure out how to increase access to care, including how to train the workforce we need to address these disparities. When Bernie is in the White House, we’re going to bring down the outrageous costs in our health care system by eliminating the profits of giant pharmaceutical and insurance companies. We’re going to bring down costs for hospitals and doctors by replacing the administrative paperwork bloat of our current insurance system with a single payer — Uncle Sam. And we’re going to make massive corporations like Amazon, who didn’t pay a nickel in federal income tax last year, pay their fair share. How do you plan to protect patients with pre-existing conditions and ensure they have access to affordable, high-quality health care? Bernie believes that health care is a human right and has fought consistently to end the despicable practice of denying people coverage based on pre-existing conditions. No one should lose health insurance coverage due to a pre-existing condition. Our profit-driven health care system is failing our people. Our country deserves better. It’s time to end a system that lets insurers make money by denying care to people with disabilities. That is why, under Medicare for All, every person will have comprehensive coverage that cannot be taken away or changed based on the status of their health. Furthermore, his Medicare for All plan will address the disparities in our system for people with disabilities that we still see in our country. Specifically, his plan requires the Department of Health to conduct an evaluation of health disparities, and to submit a plan to Congress for addressing the disparities found in the evaluation. It also creates an Office of Primary Health to increase access to care, including training the workforce we need to address these disparities. Finally, his Medicare for All plan includes explicit language that bans providers from discriminating against patients, including discrimination based on race, color, gender, and disability and allows courts to award damages to patients if this is violated. He will make sure every person gets the care they need. How do you plan to improve or change mental health care in the U.S., including access and affordability? We are experiencing a crisis in mental health treatment in this country. Bernie’s Medicare for All plan would address this crisis by providing comprehensive coverage for mental health and substance abuse treatment services as well as prescription drugs. Mental health care, under Medicare for All, will be free at the time of service, with no co-payments that can be a barrier to treatment. Furthermore, Bernie firmly believes that no one should have to choose between being taken out of their homes and communities or being denied the support they need to survive and thrive. Bernie is committed to fulfilling the promise of the Olmstead decision by ensuring that all people with disabilities have access to both home and community-based services, mental health care, and accessible, affordable housing to ensure they can enjoy their right to live in the community. In a Bernie Sanders administration, the Olmstead decision will be vigorously enforced through the Department of Justice Civil Rights Division, reversing the Trump Administration’s disgraceful rollback of disability rights enforcement. What is your perspective on pain medications (especially opioids) for those with chronic pain and how does that fit into your health care plans? Roughly 50 million Americans struggle with chronic pain. Bernie will ensure they get the treatment they need by passing Medicare for All to guarantee health care as a human right. At the same time we address the addiction crisis in this country, we must cover the full range of pain management treatments including pain medications for people struggling with chronic pain and offer the option of evidence-based alternatives when appropriate. When Bernie is President, we will: Pass Medicare for All to provide pain management care and treatments to everyone with chronic pain issues. Under Medicare for All, we will stop the pharmaceutical industry from ripping off Americans by making sure that no one in America pays over $200 a year for the medicine they need by capping what Americans pay for prescription drugs. We will follow CDC guidance on pain management to ensure people with chronic pain receive the medication they need, and offer the option of evidence-based alternatives when appropriate. And we will educate providers on evidence-based best practice treatment options for chronic pain conditions. Make significant investments in funding for addiction treatment, recovery, prevention, and research. When we are in the White House, we will provide communities across the country struggling with the epidemic of addiction with the money and resources they need to address this issue while ensuring people receive the pain medication they need. And we need to remove the greed and profit motive from pharmaceutical companies, who willfully ignored the risks of misuse and hold those responsible accountable by passing the Opioid Crisis Accountability and Results Act. This bill will prevent illegal distribution of opioids and large unreasonable number of opioids from flooding rural communities and states, hold CEOs of drug companies criminally liable for illegal advertising, marketing, or distribution of opioids, penalize drug manufacturers who do not comply with the new regulations by eliminating patent exclusivity and require federal funds received by the company to be reimbursed to the government, and create and enforce fines on drug manufacturers who are found liable for worsening the opioid crisis. How do you plan on continuing to prioritize the needs of the disability community if you are elected? When Bernie is in the White House, he will champion the rights of people with disabilities. As a nation, we have a moral responsibility to ensure that all people with disabilities have their rights protected. We will guarantee people with disabilities the right to live in the community; truly integrated employment that pays a living wage; affordable, accessible housing; and the right to health care, including mental health care and home and community based services and supports. We will reverse the criminalization of disabilities and ensure the immigration and citizenship process is fully accessible to people with disabilities. We will guarantee safe and accessible transportation for people with disabilities; we will increase educational opportunities for persons with disabilities, including an expansion in career and technical education opportunities to prepare students for good-paying community; we will protect and expand SSDI and SSI and eliminate the SSI asset test; we will ensure no person with a disability experiences discrimination or barriers to living a full and productive life by fully enforcing the Americans with Disabilities Act; we will ensure people with disabilities have full access to the internet; we will ensure justice for people with disabilities to recover from, and prepare for, the climate impacts; and we will ensure that ensure every voter has access to accessible, private, and expansive voting options. When Bernie is in the White House, we will return to a government of, by, and for the people – not the billionaires and giant corporations. We will not have former corporate executives, big donors, and lobbyists in our administration. Instead, we will ensure people with disabilities are well represented in the administration and that everyone working in a Sanders administration makes it a priority to fight for the rights of people with disabilities in every aspect of their lives, from the right to affordable and accessible housing; to a livable wage by ending the subminimum wage and increasing the minimum wage to at least $15 an hour; to a complete high-quality education; and to comprehensive health care as a right – including mental health care, home- and community-based services and supports. As President, Bernie will create a National Office of Disability Coordination focused on coordinating disability policy making to advance the full inclusion of people with disabilities, including ensuring every aspect of our public resources are ADA compliant and that the civil rights of people with disabilities are enforced. This office will be run by a person with a disability. Every person with a disability deserves the right to live in the community and have the services and supports they need to pursue the American Dream. This right must be available to all, free of waiting lists and means tests. It is our moral responsibility to make it happen. What disability-related questions do you want to ask 2020 presidential candidates?

Elaine Rush

How Long Does It Take to Get Used to Having Fibromyalgia?

I had my fibromyalgia diagnosis over a decade ago, and have had the symptoms my whole life. So when will I get used to it? In some ways, I’ve always been used to it because it’s all I know. However, I still have trouble with feeling upset or disappointed at the things I can’t do. How long does that take to go away? Does it ever go away? Throughout day to day life, things are pretty routine (we have a 4-year-old, so it has to be organized around here), but every time something out of the ordinary happens, I am reminded that it’s different for me. If I’m attending any kind of public event or show, I need to plan ahead to ensure I will have a seat. I have to make sure there are no long distances to walk from parking lots or stations. I check for lifts if it’s not on a ground floor. I make sure I only go out when my husband is off work the following day because I know I will not be able to move much and will have loads of extra “payback” pain. I’m sure many of you may be familiar with these obstacles, but have you gotten used to them? When we took our son out a while back to a place with go-carts and little tractor rides, my husband and sister had to go with him while I watched from the sidelines. On that particular occasion, it hit me pretty hard. It was as though I had forgotten I couldn’t do certain things, and being reminded was a bit of a gut punch (even though I was happy to see the others so happy). Don’t get me wrong: I have great support and help from my loved ones. I just always want to experience the things that are not physically possible for me. Still, I do practice gratitude every day for the privilege of being able to do what I can do and for the people I am lucky enough to have in my life. It’s not that I feel sorry for myself – I just seem to keep forgetting my fibro restrictions. As I sit here on the sofa, I honestly think I could go to that show with my friends, do that walk with my family and help my parents with their shopping or cleaning every week. Then it pops up and stops me in my tracks: You cannot do that! You have fibromyalgia and it won’t let you! I admit to being fairly stubborn, so perhaps I’m subconsciously refusing to “give in.” (Maybe.) My life is wonderful and I’m mostly very happy despite the pain and fatigue. I think I need to just tell myself that I am enough already and I have enough already. So, if you are also chronically ill and find yourself periodically unaware of the many challenges that come with it (thanks, fibro!), how do you deal with it when you’re reminded of them? As I mentioned earlier, I think gratitude is always a good place to start, so I would recommend starting there first. I guess it’s about finding a balance between not giving up on life and it’s endless possibilities, and not pushing ourselves too far, too often. Thanks for reading and sending love to all. x.

Lana Koehler

The Constant Life Changes That Come With Chronic Illness

No matter how much I long for some things to stay the same, everything changes. I am not the person I was yesterday. And I’m certainly not the person I was a year ago…five years ago…10 years ago. My inflammatory arthritis has continued to progress. My joints hurt all the time now, and if you saw my hands and feet you’d agree that they look painful. It makes doing some of the things I love difficult, challenging, or even impossible. The fibromyalgia continues to be ever-changing. Some days I feel like I can conquer the world and other days I feel as though the world has conquered me. Illnesses like colds and the flu seem to last forever because my immune system is so compromised. And yet, I have been able to carve out a life through all of these difficulties. I have learned to accept the help of others in areas that I had previously (and stubbornly) refused. I love to cook, but I can no longer make a holiday meal for my family. Instead, they have all rallied to take care of most of a meal so I can spend my time and energy on one small part. (I make great meatballs!). I can no longer stroll the isles of a store, so I shop at places that have electric carts. Amazon has become my new BFF. I love the new delivery programs at our local grocery stores. Uber Eats has been a godsend. Accepting these changes has been hard. I am not the vibrant, industrious person I was 10 years ago. Now, I get my worth from just being present in the moment and doing whatever small thing I can do. I’m trying to be a better wife, mother, grandmother and friend. And that’s a change I can live with.

Community Voices

🎥 What’s your favorite movie?

<p>🎥 What’s your favorite movie?</p>
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