I had to take a trip to Boston for an appointment on Friday. I went with my Mom & two of my granddaughters… girls trip!

It was a follow-up with rheumatology. Rheumatology is the primary for my Scleroderma treatment. My long-time rheumy recently took a leave from practice. I saw the doctor covering her patients, while they search for her replacement. Anyone with any kind of chronic illness understands how hard it is to lose a doctor you trust. It’s terrifying to meet a new doctor.

The doctor was very kind & knowledgeable from what I could tell in 30 minutes. But I was so anxious. My PTSD was in full force. Every question he asked felt like a personal attack. I was a bumbling idiot. I felt like I was defending almost 20 years of being sick. Did he not believe all of my previous doctors, tests, diagnoses? Will he make me do all these awful tests again? Damn it. I hate that my rational mind knows none of this is reality, yet my PTSD brain takes over and I don’t stand up for myself. I’m not clear & direct in the moment. I sit there feeling like a victim being bullied. Again, he was very kind. My mind left me feeling this way, not him.

Normally I’m a strong and assertive person. When my medical anxiety is sent into overdrive I’m like Lucy Ricardo trying to explain her latest blunder to Ricky! I can almost hear his voice, “Lucy, you’ve got some ‘splaining to do!”! I feel like a child in the waiting room of the principal’s office. It’s a terrifying feeling to not feel in control of anything, even my own feelings.

“Lucy, you’ve got some ‘splaining to do!”

When I have to go to Boston, I usually stay the night. It takes me around 2 1/2 hours to get there. It’s a long, painful drive. I’m exhausted and not at my best by the time arrive. All of this is what this person, who’s never met me sees and tries to assess for treatment. A babbling fool who can’t coherently convey what she’s feeling. I’m a hot mess who can’t shut up, edgy & defensive. I get through the appointment & it’s like a hurricane of emotions all at once. I feel victorious I made it through meeting yet another doctor. I feel like an ass for being such an idiot at my appointment! I’m exhausted and feeling lousy. I’m so sick and yet I made plans & I’m determined to follow through with them! I’ll be damned if this body and this disease take anything else from me. This is how determined I am, yet somewhere in my soul I know, my body is the navigator of my life.

I go back to the hotel & collect myself. Then I head across the street to meet a friend & colleague I’ve been working with online. I bring my Mom & 2 granddaughters along to meet him for coffee. I’ll be honest, I was looking forward to meeting him and now I feel so poorly. I do my best to engage fully in a conversation and not seem disinterested. I don’t want to insult this beautiful soul, who took time out to come and meet me. I knew I wasn’t myself. I wasn’t even close to being myself. I truly believe I would’ve canceled if it weren’t for the fact that I know he deals with his own health issues. I knew he’d understand & I’ve been so looking forward to seeing him. But it really sucks that anyone has to understand & that I feel like I need them too.

A picture says… nothing. A 10 second shot of someone’s life, tells nothing. They convey exactly what they want you to believe.

Thankfully my friend was amazing & I know we will see each other again. I want to see him when I’m feeling myself. I want to introduce him to my husband. I want to meet his husband. I want to live life like normal people do!

After saying our goodbyes, you’re probably thinking, I made my way back to the hotel to lay down. I did not. How could I? I promised the girls I’d take them shopping. I tell myself, I’ll be ok, I’ll be in my wheelchair. I’m not ok. I’m getting worse. I smile, I watch the girls smiling & having fun. My body is screaming, but my heart is happy.

Finally, we go back to the hotel. I lay down to rest. As we all know, I never rest. I’m lying there slowly feeling worse and worse while sorting through messages, organizing notes, and looking at my schedule. I am trying to stay focused so I can watch some friends’ shows later that night & take the girls to the pool for some swimming, before ordering them some dinner to be delivered. Then I’ll “rest” some more, watch my friends perform, live online & trek home tomorrow.

Making memories, full of giggles & silliness.

I make it through everything! I did it! I feel like I was dragged behind the car for this entire adventure, but I did it!!

Ride 2 1/2 hours ✔️

Appointment ✔️

Meet friend ✔️

Take girls shopping & swimming ✔️

Get some work done ✔️

Watch my friends shows….NOPE

I was so sick at this point. It wasn’t happening. I lay there feeling awful. I listened to the girls giggling and having fun. Again my body was pissed off, but my heart was full. It was a long night. I ended up so sick, I couldn’t travel the next day either. This adds stress. Again my body controlled my plans, my wallet takes a hit & I’m left having to be helped with everything.

Finally, on Sunday, we travel home. It takes most of the day. I have to stop multiple times, at different stores & let the girls shop while I literally lay down. I don’t want to ruin the girls’ fun experience by stopping at rest stops, where there’s nothing to do, but watch me lay there recharging! We finally make it to where the girls are being picked up. Then we go to Mom’s, I’m done. All my defenses collapse. I’ll be staying at Mom’s and I’ll head home tomorrow.

It was a long difficult weekend, physically & mentally. I know I’ll hear a thousand times, how was your weekend? Mostly from those who have no idea how I really spent my time. They’ll see the smiling picture, my friend, & I will share or posts the girls will make of all their fun & assume it was a perfect girls trip. I will take some time to get better and then I’ll decide how I’ll remember this weekend.

In a few days, all the negative will fade into the background and I’ll “choose” to only remember the fun parts of this wonderful, memory-making, girls trip. I know the girls are growing and there won’t be many more of these moments. I’m also keenly aware that I won’t have my mom forever and that I don’t know how long my body will allow for these kinds of trips. I’ll take every minute. Even the ones when I don’t feel like I can endure much more.

My moments may not be easy, but my memories will be beautiful.


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