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    Daniel Graups

    Chronic Pain, Disability, Ehlers Danlos Syndrome

    Anxiety Depression Mental Health Bipolar Disorder Chronic Pain Autism Fibromyalgia Borderline Personality Disorder Disability Migraine Rare Disease Rheumatoid Arthritis Epilepsy Cancer Chronic Illness Down Syndrome Crohns Disease Multiple Sclerosis PTSD Staff Breast Cancer Lyme Disease Suicide News Check In With Me Parenting 52 Small Things Ehlers Danlos Syndrome Eating Disorders Lung Cancer Mental Health, Chronic Pain, Disability, Chronic Illness, Ehlers Danlos Syndrome, Suicide, Parenting, Eating Disorders, Rare Disease

    Community Voices

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    #Anxiety #Depression Mental Health #BipolarDisorder Chronic Pain #Autism #Fibromyalgia #BorderlinePersonalityDisorder Disability #Migraine Rare #Disease #RheumatoidArthritis #Epilepsy #Cancer Chronic Illness #DownSyndrome #CrohnsDisease #MultipleSclerosis PTSD Staff #BreastCancer #LymeDisease Suicide News Check In With Me Parenting 52 Small Things #EhlersDanlosSyndrome Eating Disorders #LungCancer

    Mental Health, Chronic Pain, Disability, Chronic Illness, #EhlersDanlosSyndrome, Suicide, Parenting, Eating Disorders, Rare #Disease

    3 people are talking about this
    Community Voices
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    This test is so random

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    Community Voices

    How Surviving Rape Helped Me Survive Lyme Disease

    When I’m faced with the questions of “how can you handle your life with chronic Lyme?” or “How can you stay strong?” I’m not sure. How can I tell others to survive Lyme when I’m unsure of how I do. The last year of my life has been lost under the chaos of trying to treat my #LymeDisease with antibiotics, as I flare so extremely bad. I’ve never known such pain, true, true pain until now. I’m starting an herbal protocol, and I’m been able to stay on it for 2-3 months. This is a first. So I finally see glimmers of hope, although I don’t feel any better. Yet.
    my first year as a Lyme survivor just ended. And part of me still has no clue how I managed to not just make it, but successfully live my life to the fullest. Another part of me knows all too well why I made it through this year. I was raped at a party while I was a drunk 16 year old virgin. I had no coping skills, no real trust that authority would care. All my friends were younger, none of us had sex before. I quickly began to drink and use drugs more and more. I had no idea how to live, or why. I eventually told my parents, who put me into therapy. I never pressed charges because I was terrified of any more attention, and I truly did not understand what was happening. A part of me has regretted not reporting it, but statue of limitations and all.
    My #MentalHealth was another huge thing I didn’t understand. Why did I get so angry and sad when I drank? Why does my heart start to pound out of my chest if I imagine seeing him again? I did not know what #Depression was, or #Anxiety. I was diagnosed with PTSD, but as I worked on it in therapy I still couldn’t or wouldn’t put the pieces together. Eventually I drifted back to my friends, and partying all the time. I didn’t really care anymore.
    And on went years of confusion, unhealthy relationships, self destructive tendencies. I found a way to grow cold, put up walls, distrust even further. Drugs were fun and I spent years just doing whatever came up, while functioning at school. I still really didn’t care. It wasn’t until the end of college when I was in the most unhealthy relationship, just doing things I truly hated, something snapped in me. I knew I needed to get away, so I moved to Hawaii to work as an organic farmer and spent years traveling, exploring the world and who I truly am. I made a very conscious choice to just stop doing everything I always did. It wasn’t a simple clean cut life transition, but I came out the end happy to be alive and me.
    Now that I have chronic Lyme disease, I do know how to survive. I know I will never doubt myself. I know that letting negativity be a constant will honestly kill me. I know what my heart contains and has to offer, and that I don’t have to stop living and loving because I am debilitatingly sick. I know that I had to talk about my Lyme, often and openly. I Know there is no quitting, it is not even a thought. I know what it feels like to have a body that doesn’t feel like my own, a body that hurts so much. I am being treated for my mental health issues with therapy and medication. I know when it’s time to toughen up and when it’s OK to feel my emotions. I can’t let them make decisions for me, or be present during all the hard times. But they will come out in someway, so when I feel like it I curl into a ball and scream and cry. And I don’t feel guilty about it.
    I know that using our voices will be our savior, and help humans everywhere. I know there is so much room for love. I know when it’s time to let go, and when to open the door with a smile on my face. I know what blessings are and how to shower myself in them. I know no person or disease will cause me to lose my life and self identity. I know the isolation and estrangement from people standing just next to me, so alienated it’s like I’m not even made for normal. I know brokenness too well.
    I know the inspirational survivor community will always support my journey. We have fought so much to be where we are today. Don’t add hate to the plate, there’s no room. To heal, we can only forgive and love. Unconditionally, everywhere. In our darkest moments, love is always there. Maybe your mind is telling you otherwise. Prove your depression wrong by loving yourself and your life more than you ever dreamt. Walk hand in hand with your anxiety, slowly and calmly. Hold your head high. Look at all you have survived, and all that is before you.

    Community Voices

    What my experience in Peru did for me

    I’m in a state of ‘pesado’, a dream-like state locals describe as having a weight upon you. I’m trying to stay calm; trying not to fight it like I’ve always done. I can see everything around me in the room. I want to scream out to my dad who’s napping in the bed beside me, but I know it won’t work. You can’t move unless your dream or conscious allows you to. You can’t escape. So, I let go and travel deeper than I’ve ever gone before; to that scary place that harbours my inner ‘demons’. It turns out the plants I’m using in my treatment want me to face a big one. Its name is #Anxiety#Anxiety, and today I’m finally ready to acknowledge and embrace it. It’s been one week since my dad and I left Canada to come to Mayantuyacu – a healing retreat in the Puerto Inca Province of Peru. We’re on day four of a 15-day ‘retreat’, and I’ve already told him numerous times that I want to leave. This place is far from my current definition of a retreat. And it’s not because of the tasteless diet, inescapable heat (31 degrees Celsius/88 degrees Fahrenheit), lack of electricity or cellular range, millions of insects (including the five tarantulas in our tambo), or the 2-hour vomit purge I went through on day two…to name a few. It’s because, when I think about my pal Merriam-Webster’s definition of retreat – an act or process of withdrawing especially from what is difficult, dangerous, or disagreeable – my experience at Mayantuyacu was anything but that for me. I learned to embrace rather than withdraw. I became grateful and, more importantly, mindful of something that has been blocking me from fully living my life. Ironically it took me getting very sick to use the strength I’ve always had to shift my mindset, and ultimately find happiness. For my fellow UC’ers and Crohnies, it also means less anxiety-driven visits to the bathroom. My surroundings, while raw and sometimes dangerous, were at the same time mesmerizing and healing. A magical waterfall that electrified you with energy the moment its water touched you, the abundance of amazing plants and animals playing their role in the circle of life, and the wonderful people from all around the world, sharing their stories, love, and support for one another. #LymeDisease#LymeDisease, #Cancer#Cancer, #Addiction#Addiction, #Depression#Depression, broken hearts, many chronic illnesses. We were (are) all connected by pain and suffering, and the power to heal and learn more about ourselves. During my stay at Mayantuyacu, life became simplified and yet so deep and fulfilling. Most of us would wake up when the sun (and rooster) came out, around 6:30 am. The rest of the day was something each person could pursue alone, or in the company of another or others. My dad and I were a team. My love for (and understanding of) him is so much stronger because of this journey. We would eat breakfast, wash ourselves and our clothes in the stream, go for a walk along the boiling river and jungle, or nap in the hammocks of the Maloka (place of ceremony). Then it was lunch, which for me was usually followed by hours of lying in bed thinking, dreaming, writing, doing nothing. There were no distractions. I was there for me and allowed myself to let go and live in the moment. Dinner was generally the tastiest (sometimes we were treated with chicken and papas fritas) and every second night at 9:00pm, guests and locals would participate in a ceremony which consisted of optional Ayahuasca journeys, incantations (speaking to the plants), meditation, and discussion that sometimes carried on until sunrise. For me, I received clarity, focus, and awareness. If you take a moment to reflect that 25% of modern pharmaceuticals are derived from rain forest plants, and currently less than 1% of tropical plants have been analyzed for medical purposes, maybe you can understand the hope I felt when I decided to try plant therapy. While at Mayantuyacu, I became very close with someone who had been suffering for more than 15 years from a disease similar to UC. I can’t remember the name of it but, in addition to her gastro intestinal system, her symptoms affected her reproductive system. I spoke with her a month ago and she told me that she is symptom-free for the first time in 16 years. Is it a miracle? Will it last? Would it have worked for me if I would have stayed longer? While I sometimes ask myself these questions, I’m authentically happy with the path I have chosen and have no regrets. I’m in a good place today. I came back with a greater level of awareness and acceptance, which means that anxiety no longer cripples me. In short, I’ve learned to visualize as something that comes and goes and therefore does not define me or my life. This shift in mindset has opened doors for me mentally, physically, and spiritually (still working on this one). I used to feel like my life was being stolen from me, piece by piece. Today, seven years after being diagnosed with UC, I feel very different. I’m more mindful and grateful for all the amazing relationships and experiences I have in my life. I’m building something special with the people I love. My story might sound a bit extreme and maybe crazy to some people. Heck, if you had met me seven years ago and asked if I’d consider plant therapy in Peru, I probably would have politely responded ‘no’, and then made up some creative excuse to escape our conversation. That’s why I’m so grateful for the amazing people in life. From my family and friends (especially my wife), to my doctors and workplace, they have all unconditionally supported my decisions and the journey I’ve chosen to create. Peru turned out to be a fundamental part of my personal journey. For you, it might not necessarily be a physical place or plant therapy. For other people, it’s been meditation, mentorship, exercise, and the list goes on. For me, the takeaway has been a shifting of my mindset and the ability through visualization to not let my and fears define me. So, if you’re interested in this story, my advice is to do as much research as you can around the next steps if your journey – read, listen, ask, digest. If you have a question, I promise to do my best to respond as a thriving and fellow human being. Hang in there and embrace your journey. Don’t let your define you or your life. You are so much more.

    Community Voices

    Why I Won’t Stop Making a “Production” out of My Lyme disease

    I once had a manager who, when speaking about the gay pride parade, said something to the effect of ‘I have no problem with gays; people can do whatever they want, but I just don’t understand why they need to make such a big production out of it.’ That mentality is precisely what people refer to when they talk about the concept of privilege. You don’t understand why some people feel the need to make a production out of their visibility, equality and freedom because you’ve likely never known what it’s like to be without it. As someone who has been plunged into the nightmare of Late-stage #LymeDisease, I am all too familiar with both sides of this sentiment. I understand that there are people who are sick and tired of hearing about Lyme disease. They may be unaware of just how serious an illness it is, or they may simply feel that it’s a private matter and should remain one. Must we really make such a big production out of our personal matters? Are we really that desperate for attention? The answer is YES. Living with Lyme disease isn’t just a matter of being sick. Most people will rightfully argue that they have health issues too; they just aren’t necessarily advertising them. This mind frame is exactly why it’s so critical that we continue to share our stories and educate the public about . “Advertising” our illness is the only chance hundreds of thousands of men, women and children will ever have of getting better. This is because, simply put, The Center for Disease Control says that Chronic Lyme Disease doesn’t exist and that the thousands upon thousands of people who are incredibly ill after three weeks of antibiotics are suffering from what is known as Post-Treatment Lyme Disease Syndrome, which is something the CDC refuses to address, and therefore, insurance will not cover. This, despite the fact that scientific research shows that Lyme bacteria can survive and persist even after long-term treatment which can last for years. That is like telling someone with #Cancer that if one cycle of chemotherapy didn’t cure them, they must be one of the unlucky patients to be experiencing post-treatment Cancer, in which case, good luck and god speed. That means that those of us suffering from this brutal illness are left virtually on our own. Most doctors either flat-out deny our illness or admit that they simply don’t know enough about it to help us, which means that our only choice is to spend our days doing our own research, traveling to distant cities while ill to seek out a small pool of experts, pursuing various pricey alternative treatments (something virtually every Lyme doctor, will advise whether we are treating with traditional antibiotics or not), draining our finances, and being poked, prodded, stabbed, scraped, stung, and sickened in a desperate effort to relieve some of the relentless pain we feel on a daily basis.
    And if this sounds dramatic, imagine what it feels like to live it. Many sufferers have been bed-ridden for years and have spent well over six figures trying to regain their health. So, when you see another one of those Go Fund Me campaigns from someone who is asking for help covering their medical expenses, understand why we have to resort to such measures in the first place. Trust me when I tell you that putting yourself out there when you are ill, vulnerable, frightened, and desperate for help is the last thing any human being in their right mind wants to do. It’s terrifying, humiliating and physically, mentally and emotionally draining. We do it because we have to, not because we want to. So, if we seem to be making a “production” out of our illness, please understand why. We need you to see us, hear us, and stand with us in solidarity and demand that the medical community start taking notice. We need you to reach out, offer support, and treat us the way you would any other person in your life that is going through a life-threatening illness. We can’t do this alone, and we shouldn’t have to. Today it might be our personal matter, but with over 300,000 new cases reported every year, tomorrow it might be yours. Please support us as we continue to spread awareness, raise funds, and advocate for better testing, affordable treatment, and a cure for this devastating illness. No one deserves to suffer like this, and together, we can ensure that future generations won’t have to. For more information about , visit www.ilads.org or reach out to someone you know with Lyme and lend an ear.