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    My story

    I was diagnosed with CRMO when I was about 9. Since they were worried it was cancer I didn’t get to know much at all. It affected my knees and I remember lying to my doctors at the age of 9 it was only one of my knees so they would believe me. They found 2 lesions on my right knee and 1 on my left. For a while after my diagnosis it didn’t affect me much. I have always been a huge swimmer to help with my EDS. It didn’t affect my sport for a while. I was one of the top swimmers on my team in my age group. I was humbled quickly with my shoulder pain. Again it was 2 lesions in one 1 in the other. I sat out a lot more and my coaches told me to swim it off. It destroyed me mentally to be treated the way I was. I had only 2 coaches on my team who understood what was going out despite explaining it over and over again. After covid I went to my club practices on occasion but quit during my high school swim season because I got lesions on both sides of my pelvic bone. I continue to swim on my highschool team and I’m currently coaching a summer team. Outside of being a student athlete. Most days I struggle to walk more than a block. I often use mobility aids like wheelchairs and crutches. I don’t want this story to be completely depressing and it’s not. reading through the CRMO # I see that a lot of you are parents. I promise it’s not all bad. I’ve been inspired to persue a career in health care to help kids with chronic pain and conditions. This world is not built for us but with a support group it is something that is easy to cope with. If someone you care about struggles with CRMO make sure to not push them to hard. We know our bodies limits. Tip: Fruits are great foods for inflammation- genuinely have been a life saver for me! #ChronicRecurrentMultifocalOstomyelitis

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    Journeying with Janus: A Mythic Perspective of Blood Cancer

    When first diagnosed with a rare blood cancer, I saw it almost exclusively as a mechanical problem; something was wrong with my body that required fixing. It took many years to understand its true nature; that it was not something to be feared and fought, but an attempt to initiate my own process of deep healing.

    Furthermore, a realisation that the physical manifestation of my illness might be the latter stages of something that has resided inside me since I was a young boy — a tightly held story that was no longer serving me.

    I am reminded of the D.H. Lawrence poem, ‘Healing’.

    I am not a mechanism, an assembly of various sections.

    And it is not because the mechanism is working wrongly that I am ill.

    I am ill because of wounds to the soul, to the deep emotional self

    and wounds to the soul take a long, long time, only time can help

    and patience, and a certain difficult repentance,

    long, difficult repentance, realisation of life’s mistake, and the freeing oneself

    from the endless repetition of the mistake

    which mankind at large has chosen to sanctify.

    A decade after my diagnosis, I have been led to a very different space. My life has transformed from the corporate world to that of meditation teacher, mentor, and an avid scholar of the mythopoetic — a storyteller of sorts.

    The realm of myth is always with us; while often deeply veiled in our ‘adult’ existence, it is retained in our imagination, our childlike curiosity. It allows us to remain malleable, keeping our minds open to a worldview that does not become diminished and myopic, but remains as big as the world itself. It offers us the opportunity to let go of rigid ideas and of how things should be — so often a misguided concept of what it means to ‘grow up’.

    Entering, or allowing for, a mythic perspective opens us to a life not bound by time. It is the middle way, the space between. Similar to a meditative practice, we can better see the true nature of our issues and then bring imagination to bear upon the surface level of hard facts. We emerge from this process more open to becoming whole; to heal.

    In early 2011, I was diagnosed with a Myeloproliferative Neoplasm (MPN), a chronic condition in which the bone marrow makes too many abnormal red blood cells, white blood cells, or platelets. In my case, it is predominantly platelets.

    I have always found this interesting, as I’m well aware that my early life experiences seduced me into holding onto a story around ‘protection’, which over time distorted to become ‘overprotection’. This played out again and again in all aspects of my life, from relationships to self-care, even body dysmorphia.

    It’s of no great surprise to me that platelets play a key protective role in the body and that I now make too many of them.

    The stories we carry can put us in touch with our own unique potential, our genius. However, we are more often than not inclined to grasp for a story that makes us feel more in control and less anxious. They become coping mechanisms, and we hold onto them for — quite literally — dear life.

    Perhaps over time, this ‘clinging’ can lead to related physical manifestations.

    Would it be more useful to become curious and ask the story what it wants of us — what it is pointing at, rather than what it appears to be — and therefore not attach to it so completely?

    With that in place, let us take a deeper dive into the world of MPNs. For many of us impacted, it involves a gene called JAK2. This gene provides instructions for making the JAK2 enzyme, which is very important for both encouraging and controlling the production of cells, especially blood cells. As such, the JAK2 enzyme is usually acting inside the stem cells in our bone marrow as a kind of traffic cop — however, in certain MPNs, a mutation in this gene causes the JAK2 enzyme to always stay on, so overproduction occurs, creating a cascade of serious issues over time.

    Janus kinase (JAK) is a family of intracellular, non-receptor tyrosine kinases that transduce cytokine-mediated signals via the JAK-STAT pathway.

    Read the full story: asherpackman.medium.com/journeying-with-janus-a-mythic-persp...

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    Mental Illness has been passed down from me to him

    My son and I got matching tattoos for mental illness. But, customized the colors for each one. I have been depressed and have considered suicide since I was a kid. It later turned in bipolar behavior. My son has Aspergers, ADHD, depressed and considered suicide a few months ago. But, he asked and went to an Inpatient therapy center. The heartbeat is a promise that we won't flatline. I have pink on my heartbeat. As a breast cancer Survivor, it's a promise to not let cancer kill me. He has red for ADHD, colors for depression and OCD. I have them for autism, depression, and bipolar. Hopefully it will help start a conversation to help someone deal with mental illness. When I started talking I started healing.

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    Love/Hate

    I saw this one and it really reminded me of my relationship with my dad when I was a teenager. My dad was great but made some mistakes. Overall, he did everything he could to support me. As a teenager, I took this for granted and took out all my frustration with life, myself, and the world, out on him. Of course, I loved him, but I also felt like I hated him. My hate was a reflection of my pain, not a reflection of his parenting. But I was too young to know this at the time. Fortunately, I ended up getting a lot of help and we have a great relationship now. Is there anyone out there that can relate to hating someone that they love? What happened and where are you now?

    ~ Thanks to all. Thanks for all. ~

    Speaking of thanks for all, I was hoping we could acknowledge everyone who comments below. I know it seems like a small gesture, but many people here have never opened up to anyone before and being open and honest with strangers can be quite scary. So, if we could show our gratitude by giving their comment a simple reply or heart, I’m sure they would really appreciate your team support. What do you say?

    Also, I recently launched my own mental health company called Neurora, where my team and I help other companies in Copenhagen with stress-related burnout. I'd really love it if those of you who are on LinkedIn could follow my company's profile for support. Here's the link:

    www.linkedin.com/company/neuroranordics

    #MentalHealth #Depression #Suicide #Anxiety #BipolarDisorder #BorderlinePersonalityDisorder #Addiction #dissociativedisorders #OCD #ADHD #Fibromyalgia #EhlersDanlosSyndrome #POTS #PTSD #Cancer #RareDisease #Disability #Autism #Diabetes #EatingDisorders #ChronicIllness #ChronicPain #RheumatoidArthritis #MentalHealth

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    Moving forwards

    I know it's easy to fixate on all the mistakes we've made in the past. But all this does is make us feel guilty, depressed, or angry. It's of course good to learn from the past and use it to reflect on how you can be better, but don't hold yourself hostage in the past. Let yourself go so you can face forwards and focus on how you can work on making your life better. Are there some things from that past that you can use to be a better you for tomorrow?

    Also, I recently launched my own neuroscience mental health company called Neurora, where my team and I help other companies in Copenhagen with stress-related burnout. I'd really love it if those of you who are on LinkedIn could follow my company's profile for support. Here's the link:

    www.linkedin.com/company/neuroranordics

    ~ Thanks to all. Thanks for all. ~

    Speaking of thanks for all, I was hoping we could acknowledge everyone who comments below. I know it seems like a small gesture, but many people here have never opened up to anyone before and being open and honest with strangers can be quite scary. So, if we could show our gratitude by giving their comment a simple reply or heart, I’m sure they would really appreciate your team support. What do you say?

    #MentalHealth #Depression #Suicide #Anxiety #BipolarDisorder #BorderlinePersonalityDisorder #Addiction #dissociativedisorders #OCD #ADHD #Fibromyalgia #EhlersDanlosSyndrome #POTS #PTSD #Cancer #RareDisease #Disability #Autism #Diabetes #EatingDisorders #ChronicIllness #ChronicPain #RheumatoidArthritis #MentalHealth

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    The Evolution of Grief

    Grief changes over time, or perhaps more realistically it’s our thoughts, our feelings, and emotions, that become altered and change with time. The grief is still there. Other life things are added, and the grief then presents itself not as predominantly. #Grief #BreastCancer #Cancer (-not me, but my daughter) #Family #PTSD #Depression #Thoughts
    #anticipatorygrief

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    Just arrived

    Honestly, I am here because my multiple diagnoses have caught up to me. I am searching for a safe place where I can be myself and let my feelings flow.

    I have had MS for approx. 15 years and I am accustomed to putting a positive spin on my diagnosis...it could be so much worse, I can still walk!, etc... After finding out twice (yep. twice!) that I also have cancer in the past 10 months, my anxiety and deep depression has returned with a rage!

    I believe that I got through those two cancer diagnoses, treatments, surgeries, etc... with the same attitude "It could be so much worse, I'm so thankful that I caught it.....". However, after completing a month of radiation, I am shook to my core.

    I do not want to spend the rest of my life waiting for the next shoe to drop. I don't want to hear that I am so "emotional". As I mentioned in my profile... my rose colored glasses have fogged up plus my drinking glass feels emptier than it has in some time and I don't have my usual desire to fill it back up!

    So, that is most of my story.... Reading it aloud, I feel selfish for reaching out but as I said... a safe place to share sounds like a wonderful respid from where I am currently at.

    My very best, Hautumn

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    How do you pace your energy levels throughout the day?

    Symptom management when you live with a chronic health condition can be challenging, especially when you only have so much energy to work with on any given day. It can sometimes feel like a guessing game of how much you can get done, right?

    What is the most effective way you’ve found to measure how much energy you have to complete your daily tasks? How do you delineate your responsibilities if needed or slow down the pace?

    #ChronicPain #ChronicIllness #MentalHealth #Disability #Caregiving #RareDisease #Migraine #Stroke #CardiovascularDisease #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #Spoonie #Lupus #Endometriosis #Hospital #Cancer #Anxiety #PTSD #CheckInWithMe

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