Five years ago today, I could’ve died. I had the first of 6 surgical biopsies for suspicion of Lymphoma. But, I survived it and all the other side effects from my illness that couldn’t claimed my life, crippled me or left me incapacitated in some way.
Yet, it was because of my struggles with autoimmune disease I realized I wanted to live. It was then I learned a true friend is not someone who pays lip service to you by asking how you are or if you need something but is largely absent from your life without reason on a day like today. They’re the people who actually show up in mind, body and spirit by offering time, assisting with your needs and supporting you without enabling you. They may not understand the pain, complications or intricacies of your disease but they listen and empathize with you while encouraging you to keep fighting.
Today, as I gazed out at the Hudson River from Pier 45 I was surrounded by true friends and family who journeyed to support me at the Autoimmune Walk NYC. As a team we raised $4,000 for research. More importantly, we tested our bodies to walk and raise awareness about more than 100 illnesses.
As I stepped forward to address the crowd, I felt the sun hit my “no excuses” t-shirt. I was beaming with pride as I saw my loved ones wearing them too. They stood with me as I told their crowd their is no excuse for allowing yourself to die without doing everything in your power to get the answers you need to live your best life. There’s no excuse to only support causes focused on one autoimmune disease when we are all the same; human beings suffering from mysterious illnesses with root causes that could be the same. And, there’sno excuse for letting your illness limit you. You can do what you want by adjusting your thinking, accommodating your needs, and not accepting I can’t as the answer.
#aarda #friendship #coworkers #igg4 #spoonies #autoimmunedisease #invisible illness #chronicillness #chronicpain #disability #2018 #joythroughthepain #backpain #blogger #writinglife #kneepain #autoimmunewalknyc
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Congrats on completing the walk. It’s great you have friends and family likebthatband I agree those are the true ones. I have
a best friend like that.
That message is so important for spoonies. But I do wish it was that easy. I do believe you can do anything but just have to do it differently. But I don’t believe you can do everything. For me I’m bedbound I have such little energy… so everything takes so much more. It takes me a week to recover from anything. And I can only go out for a few hours at a time. I have so many hoes and dreams. But I’m stuck here. I do do things adapted. I have a good positive mindset. But I am still unable to do all of the things I want. And it’s not about letting myself. If I had s choice I would be running the world! But it’s really wonderful you have this message to them, because that will help the ones who are able to do things. Like you can live with pain it’s just about adapting and stuff. But severe fatigue? Not so easy to just push through.
Hope you can rest up as you recover from this walk. I hope to attend one of these somedays! Take care xoxo
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I totally understand the fatigue problem. Years ago, my doctor gave me a prescription for Ritalin to take when my extremely low energy prevented me from functioning. I take days off when I need them. I take naps. I look to my family for emotional encouragement, which often helps me fight through pain and fatugys. And, sometimes I can’t do the things I want at the time I want. Unfortunately,’my condition may afford me a little more flexibility and options in terms of procedures to tweak my body than yours. But, I do know that by telling myself that can’t isn’t an option I keep searching for new treatments, tools to assist me, and ways to do all the things I want (money provided).
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