It’s a Wild Ride – demetria DiGrazia

Three years ago today, I was admitted into the hospital for COVID-19. I went in thinking that I may never come out. In fact, I called my friend, Roxy, who lives in New Orleans and asked her to come help Joe and Izzy sort out my thing should I die. Thankfully, that's not what happened. I struggle with a lot of things nowadays, but I realize that the outcome is much better this way than not coming out at all.

These days I can walk around my house with my cane, occasionally hang out with friends at their houses or someplace that I can sit down-- lol. I have good days and bad days.  Some days I mourn who I was. I look forward to the time when I can truly just rest and appreciate where I am now and how far I have come.

I'm so grateful to my family and friends for supporting me and rooting me on. I struggle to come to peace with where I am at, and I know finding that peace is a practice. While I am still seeking answers to continue to make me better, I am also learning to be at peace with the fact that I am still alive, different, but thoroughly and utterly alive.

Maybe someday I will have the miracle I'm looking for, and maybe I won't. I am determined to find my true self in either form. Systemic sclerosis and Interstitial Lung Disease are challenging diagnoses that have rocked my world. I also deal with Fibromyalgia, Asthma, PTSD, and Anxiety. Additional diagnosis include Bronchiecstasis, GERD, Raynaud’s, Restless Leg Syndrome, Sleep Apnea, ADHD, and Depression. Lol-- it's like I got COVID and a bunch of "fun prizes" to go with it.

I also need to say that these diagnoses and these challenges face a HUGE SHIELD of LOVE. It sounds crazy but in some ways I'm now more connected to my family than I was when I was working all the time. My daughter shows me grace and dignity and kindness in a way that's beyond her 13 years of age. My husband works tirelessly to make sure I'm well taken care of wherever I go. I can't believe how wonderful a family I have. It was always my prayer when I was a young, confused person that felt alone, that I would find and have a beautiful family. I do, in fact, have a beautiful family. I am so grateful and so amazed at the abundance of love in our tiny family of three.

The love and protection and generosity shown to me by my friends is amazing. So many of you contact me and lift my spirits up. Sometimes, people say, “I wish I could contact you more. I feel like such a jerk because we haven't been around.” The truth is that so many of you do reach out. I’m really grateful that I have time with friends via text or messages or seeing people in person it's always such a joy. You don't know how much it means to me. I can't believe how loved I am.

My outside family is also amazing. My adopted sister and my half-sister both reach out to me in ways that I never imagined before. I am so grateful. Joe's family treats me like blood and that is another amazing gift I never thought I would have. Through DNA trees, I have found more of my Native relatives and it’s nice to have contact with them, too.

I am so grateful.
I am so humbled.
I am so at peace.

Still, sometimes I am so angry, so entitled, and so upset I could scream… But those days are lessening.  I get a lot of help from the medical teams I work with as well as my beautiful friends and family.  I have extensive care of my body and mind and emotions.  I am grateful for the professional help.  It’s a superpower to be able to ask for help and then actually “put it to practice.”

The reality is that daily I am trying to make medical calls or deal with insurance. There are days I sleep because I literally can't find the strength to do anything else.

I tend to be able to do 1 activity a day and sometimes I can shower or bathe on the same day as that activity. It's just that I can't breathe well enough to do a lot. I run out of breath. If you've known me a long time you know it's painful for me to run out of energy and I have an abundance of words I always like to talk use! Not being able to find my breath is one of the scariest things I've ever encountered. So, I will just keep working to keep getting better.

This year is the best yet. I just want to tell you all I love you and thank you all for being on this journey with me.

It's a wild ride, right?