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A Quarter Century Sick: Where Am I Now? (Part 1)





Each year, I spend time around my anniversary of getting sick/becoming disabled (June 18, 1998) giving myself some space to feel all of the feels. I also take some time to do some fun stuff to celebrate my life, my perseverance, my relationships and my survival. This has been a year of tremendous growth around my disability and my understanding of disability, which I'll tackle in Part 2! :)


The first thing I did this year was get my nose pierced! Those who have known me for a long time probably never would have imagined I'd do this! On my 21st anniversary, I got a butterfly tattoo. This time it was a nose ring. Some years it's planting a tree or something more traditional, but this year I was adventurous. :)


My stepsister went along with me, which made the experience extra special. I really appreciated having someone there with me. Monica asked the piercer, Jake, what gauge the nose ring was and he said it was an 18. I had no idea of that when I asked for a ring over a stud, but it sure felt perfect.


I got sick on the 18th of the month. And 18 is chai/life in Hebrew. Perfect.


I can't wait to change it out once it heals! :)







The second thing I did was go back to my very favorite hairdresser for the first time since the pandemic started! No one cuts my hair as well as she does (plus I adore her). I'm embracing my curls again! :) What made this special as well is that I feel well enough now to actually style my curls a bit, whereas for quite some time, I've not been able to do much with my hair.





Next up? On my actual anniversary, I went out for the most amazing sushi with my close friend Marcy, who lives an hour away, so it's always an extra special treat to see her . My relationships are what sustain me, so taking time for them regardless of the length of my to-do list is my top priority.





Last year at this time, I was in the midst of a pretty awful relapse and struggling with some huge new diagnoses, so it has been great to feel well enough to do these things.





Last of all, I invited my crew of women friends out to see our local improv group (and see two of my friends performing that night). Sadly, almost everyone was out of town or busy that night, but I still got to see three of my four of my favorites (one is missing from the photo!). It felt great to laugh....and laugh...and laugh.


It feels like a huge celebration on so many levels to have been able to do all of these things this year--sometimes I'm too sick to do these things (and certainly was much of the pandemic). Speaking of the pandemic, this is the first time I'm out and about doing these types of things again. And, oh how I missed them--I am someone who needs and craves being with people and being able to get out sometimes!


It wasn't all smiles around my 25th. I made plenty of space for grief. For me, the most difficult part of my disability is how much rest I need and how short my days are because of it. I'm incredibly limited in what I can do in a day and this is incredibly frustrating for someone with lots of ideas and passions and who is extroverted. What is 'part of' someone else's day (like a medical appointment), can use all of my spoons for the day. I constantly struggle with the ways that my disability keeps me from being able to visit with those I miss and love. I haven't seen many of my favorite people in many years, or even decades.


In addition, I've been struggling with what I thought were just run of the mill perimenopause symptoms, but we've been unable to regulate the heavy bleeding. So, around my anniversary, I had a vaginal ultrasound that revealed adenomyosis, which I had not even heard of previously. It's another difficult to treat, not well-researched women's illness. And all I could think is that I could not handle ONE MORE THING. The timing of the diagnosis was rough. It's a reminder that chronic illness is always changing, always presenting new challenges, always requiring constant vigilance. Not gonna lie, I cried a few tears filled with overwhelm and frustration with my body!


I have a life of many comforts and supports, including a fantastic medical team. I'm grateful that, overall, I'm stable enough that I'm not suffering right now. I'm just plain lucky in so many ways. I work a lot on acceptance of what is, and am often able to find peace and contentment with it, however, grief is ever-present. This is why it's so important to me to 'make space' for all of the emotions I feel around becoming disabled. My life really did change overnight.


Blessings,


Emily






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