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    • #16716
      Jodi Enders
      Keymaster

      In my column today, I shared some of the struggles I believe many of us can relate to. Living amid a pandemic can and should be alarming to everyone. However, not everyone understands how individual actions can affect others.

      Emphasizing our disapproval of strangers’ actions is something we must practice in moderation. It is super to use our voices to speak up for causes we support. Still, at some point, we need to accept that some people are unwilling to listen or be open-minded to change.

      Unlike strangers, vulnerability, acceptance, and compromise are required in our relationships if we want them to benefit both parties. When we allow ourselves time to recognize our triggers, we may realize that accepting discomfort in a closer relationship fuels our constant judgment and frustration with strangers.

      Actions converse louder than words. Those with higher health risks may feel disheartened and confused when folks who are part of our daily routine don’t understand how not taking preventive measures affects us. Encouraging identity, independence, and healthy indifference in our relationships should not involve compromising our health.

      As an individual with MG, have you felt you’ve had unfair additional stress during the pandemic? If so, do you think the problem is always other people? Or could it be our perceptions and how much we force ourselves to compromise when we are uncomfortable.

    • #16742
      Craig
      Participant

      I don’t feel like I have experienced additional stress, everyone has been trying to figure out what is right for them.  I made the determination I was going to do what is right for me at any given time and just assume that others are doing what they feel is right for them.  I guess any additional stress would have been in that I need to have a heightened level of awareness and caution compared to many other people but I don’t let their decisions affect me in that way.

      I have very healthy friends who are not going to get the covid vaccines at this time, some of them have received quite a lot of different vaccines over the years through their military service or because of overseas travel and experienced significant side effects from those.  They’re not interested in receiving these vaccines until they feel more comfortable with the information that’s available about them. Because of their decisions, I don’t hang out indoors with them for any period of time but we’ll still pull up chairs outside and hang out.

      I feel like a key thing is in how we choose to respond to situations.  My healthy wife gets very stressed if she feels like someone doesn’t give her enough space in a store but she responds to that situation differently than I do.  (Picture this at the meat counter in a supermarket, where maybe you’re trying to judge freshness and select a particular size package and it can take a couple minutes to make a selection) I just move away from that person and do the rest of my shopping and come back to that item when the person has moved on, while my wife will stand there and try to continue to shop while worrying about the person standing next to her.  She finds shopping to be much more stressful than I do but I see that as a result of her choice to respond in that way.

       

       

    • #16759
      Thomas Lee Clark
      Participant

      Craig, What a great outlook. I certainly enjoyed your post. Jodi, your post statement, “something we must practice in moderation. It is super to use our voices to speak up for causes we support. Still, at some point, we need to accept that some people are unwilling to listen or be open-minded to change.” Craig, J have a shot record saved from the military as a keep-sake. Most I had no idea what they were for, I just got in line. Some caused a reaction, some hurt for days. I was even exposed to agent orange but never carried one of them rifle-guns, my weapon of choice was a screwdriver.
      I have had kidney stones, appendicitis, and cancer but nothing caused fear and concern for the unknown like MG! I am a control freak and being completely out of control, been lead around as an invalid makes me determined not to be skated off the pond. Life for me is a bowl of olives and I spit out the pits. Never wash my hands unless I cannot hold my sandwich. Am I resistant to change? Don’t know, don’t care. Stay on the sunny side of life.

    • #16778
      janell
      Participant

      I find it very interesting this site would not post my reply because it disagreed with everything written in the column.  Apparently, this is just for people who are willing to “fall in line” and “comply”.  As I stated in my original reply, arrogance.  I thought we were free to express our thoughts, I am obviously incorrect.

      I have now lost faith in this site altogether.

    • #16780
      Thomas Lee Clark
      Participant

      Janell, A spoon full of sugar makes the medicine go down. This site has been a Godsend for me. I am reminded of the parrot that kept using bad language and his owner admonished him if he kept going he would stick him in the freezer. After a short sentence in the freezer he came out very quiet and subdued. He politely asked his owner, “What did that TURKEY say?”
      I would get angry at someone when hopped on steroids and wanted to hit them but there were two of them and I always swung at the wrong one and it was always his TALLER TWIN.

      • #16788
        janell
        Participant

        Thomas, You do you and I will do me, I am no parrot, neither am I “hopped up on steroids” or being put in a freezer.  I am entitled to an opinion that may differ from you and I am entitled to express that opinion with admonishment from someone just because mine is different.  Thanks for your comment, save the sugar for yourself, I find it bad for my weight.

    • #16789
      Thomas Lee Clark
      Participant

      Janell, I owe you an apology. We have all taken lots of meds and steroids have caused me to get unsettled and my doc always asked me how my mood was. I worked hard just to keep balance in my life. So I often sing the Mary Poppins song ” a spoon full of sugar makes the medicine go down, in a most delightful way”. What I said was aimed at me, not you and I am sorry if you took my levity wrong. My assumption is you too have suffered with this disease and what has helped me is to laugh. I think we would like each other if we give it a chance. This site has helped me immensely. Let’s compare notes!

      • #16790
        janell
        Participant

        That’s nice and I thank you.  However, I do not feel you owe me an apology at all.

        I have had this disease over four years and after my initial few months I had a deadly crisis and spent a few weeks in the ICU and hospital.  I am one of the lucky ones though, I have been on CellCept only for four years and my life is close to normal.  I do tire more easily but then, I am old.  I use a heated mattress pad at night that helps to ease any muscle pain I may left over from the day.  I really do not fit in with most of the people on this site and I rarely even read it, this particular article just caught my eye.

        My Neurologist (who happens to be a world renowned), tells me I am his Gold Star patient because my attitude is, I will not bow to this disease, I will not allow this Covid “thing” to change me, change my life, change my interaction with others or the world.  His opinion is that attitude and demeanor are half the battle.  I give all the praise to him and to God, my life is in his hands and I do my best to be representative of that faith.

        In my opinion, we are all responsible for ourselves and others are just as entitled to their opinions as I am and it is nothing but judgmental to fault others for an opinion different from our own.  The world owes us nothing, it is up to us to make our own way and be personally responsible for our own actions without expecting others to “bow” to our way of thinking.

        That’s why I found the article arrogant and condesending but again, that’s my life rule, it does not have to be yours.

        Best wishes, may you be blessed in your MG journey and be as lucky as I consider myself.

    • #16791
      Thomas Lee Clark
      Participant

      Janelle, you sound like me only use a different and better way of expressing it. As peoples we make judgements and one of mine is seeing and trying to understand our commonalities. At 76 years now and what my journey has been, I realize how blessed I have been for a dead man. Over the doorway of my “Cave” I compounded a saying for my benefit when I get the downer; “Have you considered my servant Job. Though He slay me, yet will I trust him.” There is one major difference though. I had the best neuro doc. A little 5 foot Syrian gal that shepherded me through my diagnosis and the chain-smoking surgeon who whacked out my thymus. (He wanted to go for it the day I first met him.) By the way, I quit drinking beer. I now freeze it and eat it. Finally, Getting old ain’t for sissies.

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