It’s been awhile since I’ve written and honestly, where do I begin. The last several weeks have felt like years!

I’m still recovering from my jugular compression surgery and have my final post-op appointment and ultrasound in mid-July. At the same time, I’m dealing with repercussions from the surgery that I never expected. My shoulder blade, collarbone, and joints have had so many problems. The pain is often times unbearable. I have had multiple subluxations in my shoulder, requiring a lot of bracing, pain meds, and heat/cold packs. I really don’t know how to “stop” my shoulder from essentially falling out.

Still not sure why it is happening but it could be worsening due hEDS and instability, the miscommunication between my nerves and the rest of the shoulder, extreme muscle weakness, or all of the above. My shoulder blade is out of place and “wings” with any movement and I can’t go more than 40 degrees without losing all feeling down my arm. This has been so hard to deal with and I have no idea what to do about it!

I’m seeing an ortho specialist this week just to take a look at the physical structure. I think a nerve conduction test is likely next to determine if nerve function is playing a role. My X-ray and CT scan were normal (except for a flat glenoid) so I don’t have any fractures or tears that need to be fixed.

My physical therapist, my family, and I are struggling to understand how all of this could be this severe from “one spinal nerve,” as my vascular surgeon believes. It should be getting better and those nerves should be “waking” up. The uncertainty is scary.

What else has happened in my life?

I lost my grandfather last week. He was just shy of his 97th birthday. Even though we are devastated and miss him terribly, we are so happy he is finally at peace and reunited with so many people he loved.

I also gained a family member! My bonus brother had a sweet baby boy named Jude Alexander and he couldn’t have come at a more beautiful time. I can’t wait to watch him grow.

I found a new apartment, finally back in the city! This is something I’ve wanted for so long and am incredibly proud of myself for accomplishing. Yet somehow, excitement and anxiety seem to coexist. Starting over, moving, and taking on another big life change feels overwhelming.

At the end of July, I’ll be undergoing surgery for May-Thurner Syndrome. Thankfully it is minimally invasive and recovery will (hopefully) be short and smooth.

Work has been incredibly full. My plate somehow keeps getting bigger while my salary reflects much less than the value, responsibility, and effort I know I bring. It’s been a conversation for many weeks now and I am struggling to feel validated. Reconciling knowing your worth while trying not to burn yourself out is one of the hardest balances I’ve faced.

My hand tremors and memory issues have continued to progress, and I don’t know where this leads. My neurologist has recommended other specialists in various fields, which also adds to my anxiety and everyday struggle.

My MCAS symptoms have improved, which feels like a small victory, but my stomach issues have flared again because apparently one thing in my body can never improve without another thing acting up.

And then there’s dating.

I’ve been seeing someone for a few months, and it’s been truly great. No expectations, no rush, no drama. Of course, chronic illness has a way of complicating even the most beautiful things. I’m still learning how much to share, when to share it, and how to communicate my needs without feeling like I’m asking for too much. I don’t think I’ve figured out chronic illness and dating yet. I don’t know if that will ever come.

The strangest part in all of this?

Everything I’ve wanted and worked for seems to be falling into place. A new apartment. A healthy, growing relationship. Career opportunities. Progress in some areas of my health. A life I’ve fought incredibly hard for. DECADES for. Somehow, instead of feeling peaceful, I feel unsteadiness. Anxiety.

How do I hold grief and joy at the same time?How do I celebrate new beginnings while preparing for another surgery? How do I allow myself to be happy when my body is so unpredictable? How do I make room for excitement when I am scared?

How the hell do I balance all of this?!

I don’t know if balance exists. I think some seasons of life are simply about surviving the weight of everything happening at once. The load of chronic illness is always heavy and you’d think I’d have figured out some magical formula for balancing it all by now.

I’ve done the work. I’ve planned. I’ve prayed. I’ve advocated. Ive waited. I’ve been patient, more patient than anyone!

No one has a handbook for this or tells you how to grieve the life you thought you’d have while simultaneously building one you’re quite proud of. I don’t know how to hold excitement and fear in the same hand. I definitely don’t know how to move forward confidently when you’ve learned, time and time again, that everything can change overnight.

What I do know is that this is one of the wildest, most beautiful, and most terrifying seasons of my life. Somehow, everything I’ve wanted and worked so hard for is finally falling into place, and I’m trying not to let fear steal that from me.

Thanks for reading.