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    In reply to: Perspective

    Looking Back to Gain Perspective – My Journey from 2011 to 2016
     
    I had been having all-over pain for quite a few years, but never mentioned anything about it because I attributed it to getting older. I was way beyond fatigued – it had become really difficult to get out of bed, go to work, prepare my meals, and even bathe. Every day everything hurt, all the time. I was exhausted and couldn’t get my energy level back up no matter what I tried. When I went to my follow-up appointment after knee surgery, my doctor asked if there were any other health issues I needed to talk to her about. As usual I said, “Nothing but the usual aches and pains.” We said our goodbyes and I was on my way. On the 45-minute drive home I could not stop thinking about how bad my body felt. Why hadn’t I mentioned this to my doctor?
     
    I took me more than a year to finally tell my doctor about the all-over, 24/7 pain. She asked what seemed like a million questions, poked and prodded, and then referred me for some lab tests. She said her preliminary diagnosis was fibromyalgia, but we would wait for the test results to see what they said. A few days later she called me: I had a positive anti-nuclear antibodies (ANA) titer, which when coupled with some of my other symptoms and physical traits was an early biomarker for systemic lupus erythematosus (SLE). I needed further testing and evaluation and she referred me to a neurologist. This was early September, 2012 and unfortunately the first available appointment with the neurologist would be after Thanksgiving. I couldn’t do anything but wait. Or could I?
     
    I googled and tried to absorb everything I could about lupus. I downloaded research papers. I read the blogs of people with the disease. I devoured books about auto-immune disorders and leaky gut syndrome. What I knew for sure was that I didn’t want to be on medication that I had to take daily, for the rest of my life – so I watched YouTube videos about alternative and complementary treatments.
     
    I asked myself what I would do if in three months, I was diagnosed with lupus. I decided I would completely overhaul my diet to better support my immune system; I would employ more mindfulness techniques, more regularly and frequently; I would search and experiment until I found an exercise regimen that would accommodate my pain and lack of energy without derailing me; I would reduce my stress by taking breaks, and by taking a long, mindful walk around our beautiful university campus during every workday; and I would negotiate with other administrators to balance the workload. I thought I would get everything figured out and planned in advance, so that if I got the diagnosis I could “hit the ground” (forget about the running!) with my new diet, work, and lifestyle changes. Then I thought – what is the point of waiting until I get a diagnosis? Why shouldn’t I start implementing these changes now? So I did.
     
    I was not diagnosed with lupus, but the diet, work, and behavioral changes I made brought my life back to me. It wasn’t the same as my old life pre-pain and pre-exhaustion, but it quickly became my “new normal”. I have continued living in this way to this day, and have no intention of reverting. That would mean returning to a diminished existence, and I sure don’t want to go back there again!
     
    When I look back to September 2012, I almost cannot believe the transformation. It has been quite a process, but the 3.5 years would have passed whether I had made these efforts or not. Yes, I still have some pain, but ever since the sixth day on my elimination diet it is no longer the 24/7, all-over kind. After extinguishing that constant all-over pain, I was able to begin the slow process of identifying each muscle and joint that had its own issues and receive physical therapy and alternative pain management techniques to eliminate or manage them. Using mind-body and subtle energy modalities I have experienced healing, and received illuminating insights into my life’s issues and my life’s purpose. I have also learned or developed coping skills for both physical and emotional pain. Important relationships in my life have been strengthened and deepened as I have progressed in my own personal development.
     
    In September, 2012 I didn’t know how long I would be able to continue tolerating the quality of life I had. It was difficult to see the point of pushing myself to get through every day. My life since then hasn’t been a cakewalk – along the way there have been some very large hills, and some really deep valleys. This is life, after all. But looking back now I can attest that today I have greater wellness, resilience, self-knowledge, peace of mind, and the feeling of freedom that comes from living my life authentically. It has definitely been worth all of the work.
     
    #eliminationdiet #mindfulness #subtleenergy #stressbreak #balancedworkload #whatalongstrangetripitsbeen
     


    Gail Moser

    My questions for you related to this topic are about how practicing mindfulness has affected your relationship with yourself and others. Has your attitude towards yourself been impacted? Have your relationships/interactions with others been impacted by your mindfulness practice? Has mindfulness increased your awareness of your input into social relationships or increased your acceptance of help from others?
     
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    From reflecting on my own experiences, I’ve realized that mindfulness, and particularly the mindful therapies I’ve been working with, have had a really positive impact on my relationships. Firstly with myself. Acceptance and compassion are two of the things that have led me to feel gentler with myself and my limitations. I think this, in turn, has affected my relationships with others in a couple of ways. It was hard for me to feel like I had anything to offer in a friendship when I was stuck at home having a hard time getting around, and constantly stressed out from the pain. I was no fun to be around at all, I thought. For a long time I didn’t work on my friendships or relationships at all. I focused solely on myself, thinking “once I kick this pain then I’ll go back to having a life and being with other people.” What this ended up doing was disconnecting myself from my social network and looking back I realize I was wasting time by putting my life on hold. I’ve been searching for more balance now, in focusing on myself and my relationships with others. I think acceptance and compassion have enabled me to feel more comfortable with myself in my relationships with others, which I think has also made me more pleasant to be around – bonus!
     
    Another aspect of my relationships that have really improved through acceptance and compassion is asking for and accepting help from others. I hate to ask for help! I value my independence, and even though I love to help other people it feels like such a burden and imposition to ask for help from others. At the peak of my pain, I was relying on friends and family for everything – grocery shopping, cooking, laundry, and even help caring for my pets. It was really difficult for me to accept that I was in a position where I could not repay the favors being done for me, and social norms taught me that I needed to reciprocate! I think therapy really helped me deal with this, and humbled me to the fact sometimes this is what it means to be human.
    #mindfulrelationships #compassion #acceptance #connection
     
    Have any of you noticed any aspect of your relationships that has changed through mindful practices?


    Rachel Carriere
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    I had a similar experience where I had a boss that refused to be accommodating. I had to take it up with HR and it was quite exhausting to have to fight for what I needed. I ended up having to leave the job because they pushed me out but it taught me that not every work environment can adjust to my needs or is a conducive environment. Its baby steps finding the right balance but advocacy is key

     


    Jerrie Kumalah
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    <p style=”text-align: left;”>I see a balanced butterfly mask with soft eyes, a star above a nose, furry antennae, and soft dog feet.  The star contains a crystalline third eye.   It is a calming yet bright image balanced by the yellow sun dots.  #third-eye-butterfly</p>


    ListenToYourBody
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    I learnt pretty quickly that for me to be the best employee that I could be I had to be able to advocate for myself in the workplace. This also meant understanding that not every work environment will be supportive or understanding.

    Step one to advocating for myself was disclosing that I live with a chronic pain condition and that it was essential that I find a flexible and manageable way to do my work. Before i even got to this point I spent months tracking my symptoms in an excel spreadsheet jotting down how I felt at work. Through this process I was able to identify my peak moments and I was able to start brainstorming how I would address the foggy days and the days when i might not be at my peak but still functional enough to work on something. On foggy days I mostly organized files and did the simplest of tasks. On very tough days I had to learn to step away and take the necessary rest that I needed otherwise I knew my body would make me pay for it. Regular stretch breaks, quick naps, accepting that some days nothing will get accomplished, and very clear communication with my supervisor are a few of the things I do to find balance. How have you gone about managing the challenges of multiple symptoms in the workplace?

    A few simple resources for the workplace:
    http://www.webmd.com/fibromyalgia/guide/fibromyalgia-work-and-disability
    http://www.everydayhealth.com/fibromyalgia/coping-physically/fibromyalgia-at-work.aspx


    Jerrie Kumalah

    I learnt pretty quickly that for me to be the best employee that I could be I had to be able to advocate for myself in the workplace. This also meant understanding that not every work environment will be supportive or understanding. Step one to advocating for myself was disclosing that I live with a chronic pain condition and that it was essential that I find a flexible and manageable way to do my work. Before I even got to this point I spent months tracking my symptoms in an excel spreadsheet jotting down how I felt at work. Through this process I was able to identify my peak moments and I was able to start brainstorming how I would address the foggy days and the days when I might not be at my peak but still functional enough to work on something. On foggy days I mostly organized files and did the simplest of tasks. On very tough days I had to learn to step away and take the necessary rest that I needed otherwise I knew my body would make me pay for it. Regular stretch breaks, quick naps, accepting that some days nothing will get accomplished, and very clear communication with my supervisor are a few of the things I have done to find balance.

    How have you gone about managing the challenges of multiple symptoms in the workplace? How do you learn to stop and take inventory of how your body is reacting to your work environment or the stresses of your task at hand? What are some of your work survival hacks?

    #advocate4yourself

    A few simple resources for the workplace:

    http://www.webmd.com/fibromyalgia/guide/fibromyalgia-work-and-disability

    http://www.everydayhealth.com/fibromyalgia/coping-physically/fibromyalgia-at-work.aspx


    Jerrie Kumalah
    permalink

    I am lucky to have a flexible work environment where I can work at home if I don’t need to be in the office. This is especially useful on days (like today, alas) when I am having some GI issues that necessitate me being near a bathroom, I have the ability to stay home and not have to walk down the long hallway and make noise around others.

    Just to reply to what you mentioned above, Jerrie – most people don’t know that fluorescent lights are a trigger for migraine sufferers. I am happy to report that the VA hospital in the city I live in has recently been making the change from those to LED lights. That will be good for the patients as well as those who care for them!

     

    #creatingbalanceatwork

     


    AppleStrudel

    Living with any chronic condition is a challenge but living with a chronic condition and managing work is a whole adventure of its own. It is essential to listen to your body so as to find the right balance at work. Finding a balance also means understanding how much you can handle and learning to clearly articulate your needs. So what does this mean? For me, it means knowing what symptoms will affect me the most and taking the time to start brainstorming ways of alleviating the symptoms.

    For example, I suffer from migraines often triggered by the fluorescent lights found in many offices. Every time I was at work I would not be able to concentrate because of the discomfort. Once I realized the lights where a major problem I spoke to my doctor first to see if she would be willing to write a note that I could use with my employer explaining the need to adjust the lighting. Armed with support from my doctor I asked my boss if the lighting above my desk could be removed. It was a relatively easy adjustment to make so they were able to accommodate my request. I had the same issue at another job but they couldn’t remove the lighting due to the way it was set up so I bought myself prescription sunglasses which I wore while at the office. I also would ask staff if I could turn off or dim the lights when we had certain group meetings. It was a hard exercise because it meant being vocal but it was my first lesson in advocating for myself in the workplace.
    How have you found balance at work? What are some of the things you have done to adjust?


    Jerrie Kumalah

    The principles that I follow in terms of food choices are a combination of my life experience as well as different cultural traditions.
     
    A lot of my choices are also based on heating and cooling characteristics of foods, which is a concept from Traditional Chinese Medicine (TCM). I tend to have a lot of problems with temperature fluctuation, in three senses: 1) I am sensitive to the temperature around me, both indoors and out of doors; 2) exercise can cause a large drop in my body temperature; and 3) eating food can make me extremely cold after I eat.
     
    So I try to avoid eating meals that have a disproportionate amount of foods that have cooling properties. One example is that I rarely have salads, and if I do have them, then I try to diversify the ingredients in them.
     
    This goes along with another principle that I try to follow whenever I make my food choices. I pay attention to color balance. This is a habit that I developed when I lived in Japan, as consideration of color is an important part of food culture there. It is interesting to think about how different traditions might have different reasons for emphasizing color. For example, one might think about how the color of foods is due to the different nutrients that they contain. So these different traditions can lead us back to the same place.
    #TCM #TraditionalChineseMedicine #heatingandcoolingfoods #bodytemperature #colorbalance


    annie

    This week we will discuss how we convey the information we glean from listening to our bodies in different contexts. How do you share (or not share) what your body tells you with family? With coworkers? An additional moderator, Jerrie, will be sharing her experiences with us this week to expand our conversation to workplace contexts. I hope to hear from you. – Sami

    Monday: Once I start listening, am I the expert?
    Tuesday: Will you hear what I hear?
    Wednesday: Guess what my body told me today
    Thursday: How do others learn to listen to my body?

    Jerrie’s discussions:

    Thursday: Creating the right balance at work
    Friday: Disclosing in the Workplace and Advocating for yourself
    Saturday: Accepting that your professional success might look different from everyone else’s


    Samantha Kaplan
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