The Vulnerable Parts
Last November I attempted to take a year long break from Facebook, and with a few exceptions I was successful. The first exception was confirming the anniversary date of a loss I experienced. It seems PTSD will remind you of things you haven’t written on the calendar. We have our own biological calendars. I was right, it was that day. I looked it up and left.
The second exception was checking in on a friend going through cancer after having a dream about her. She was doing ok, but this is when I kind of hated Facebook for being the place where I had to go to know. The third exception was a quick look to see if a missing person I love had checked in, she hadn’t, but she’s no longer missing. I have had enough things happen in the last ten months to write ten books, but I have been in a silent respite from social media, experiencing life without comment.
Yes, deaths, cancer, and missing persons are the few things that can drive me to Facebook. Now, today, two months early, I’m going to go back to that place, because I need to. I need help, and this where the vulnerable part starts.
Just over two weeks ago I found a lump in my forearm. It’s not supposed to be there. It’s rare. It’s so rare that a renown surgeon from The Mayo Clinic has kindly emailed me back today (on a Sunday) and his exact words were, “Deep lipomas at the elbow are not very common,” and he’s not removed more than a few. And that’s if we are sure it’s a lipoma. More testing is required to rule out a sarcoma. Lipoma = rare, complicated, but NOT CANCER. Sarcoma = let’s not go there just yet.
Anyway, here’s the breakdown, benign or malignant this rapidly growing “giant” tumor (I didn’t make that up, science calls it a giant tumor, is pressing on the nerves that make my right hand work and it’s got to go before it gets to my bone, and it’s pretty close. I saw it on the ultrasound. Funny, I’ve spent so much time in ultrasound rooms looking at Liam’s heart that I was able to navigate the muscle and bone surrounding my tumor.
This rarity means I will be traveling to have surgery. I don’t know where yet. It might be the Mayo Clinic, it might be NYC, it might be Boston, it might be Texas. This is not new territory for me – facing a rare medical issue and needing to go on a quest for treatment. Before it was my baby’s heart. Now it’s my right arm. As a mother, it’s always been so much easier to fight for my children than for myself. Regardless, here we are.
So, yeah, this is happening. I will take unpaid time off for travel and surgery and recovery. My job is really great. However, I only get 3 weeks vacation/sick combined time each year, and I had horrible bronchitis and a nasty cold earlier this year, and I took Liam to multiple clinics at Children’s Hospital in Aurora. My favorite vacation day this year was taking a day off to take Moira to get her braces off after 49 months. Sadly, the fun days are not plentiful, but I try to make the best of things.
If you know me, you know I am independent to a fault. I pride myself on being responsible and prepared for life’s challenges. Yet, I wasn’t prepared for this. I am the first person to offer to help and the last person to ask for it. So here we are in the deep and difficult vulnerable part, I need help.
I set up a Go Fund Me to help with the lost pay and medical expenses to keep us from falling into crippling debt. I hate doing this and it takes a lot for me to admit that I don’t have tens of thousands of dollars saved for surgery or that this is not a thing I can fix on my own. Just saying that I am not in control, as true as it’s always been, makes me queasy. I might hate asking for help more than the fact that I am about to a scar that runs from my wrist to the crook of my elbow. I don’t hate asking for help more than I hate the thought of losing the ability to type or write with my right hand. As a writer my hands have always been my voice, and the thought of being silenced by this terrifies me.
Yes, this is really happening. I feel validated and empowered by the good surgeon who is affirming that this is real, and I’m not overreacting by seeking the best medical care to preserve my arm and all its functions, especially those of my hand. At the same time I feel overwhelmed with the price (both in humility and dollars) required to prevent my right arm from getting worse, or worse, losing the arm completely.
So, I’m crawling back to Facebook to ask for help. I’ll need more help after the surgery with driving, etc., but for now, even a small cushion for plane tickets, medical bills, and time to recover will be a great comfort in a time of uncertainty.
Hello, Just reading up on your post, and wanted to let you know I’ll be thinking of you. Wishing you the best in treatments and fast recovery. May the fingers stay nimble and the scarring be light. ❤
Dana Brock Hageman Mended Little Hearts, National Advocacy Chair MLH of Little Rock, Awareness and Outreach Coordinator Arkansas CHD Coalition, Founder A Twist of Fate – Arterial Tortuosity Syndrome, VP 501-454-6667
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On Sun, Sep 8, 2019 at 4:17 PM Amanda Rose Adams wrote:
> Amanda Rose Adams posted: ” Last November I attempted to take a year long > break from Facebook, and with a few exceptions I was successful. The first > exception was confirming the anniversary date of a loss I experienced. It > seems PTSD will remind you of things you haven’t written on” >