It’s an angry woman country songs type of morning. I just started my day on the wrong foot. I always check my email when I wake up, and there was something in there from my Long Term Disability insurance and it just totally set me off and started my day off in a terrible way. The hubs is driving up the coast with his brother to see a friend so will be gone this whole weekend. My mom and I got in a big, rather frustrating conversation last night. It’s been a days-long battle with LTD. Just a big pile of crap all around.
So today, I’m going to turn it around. I’m going to find the right music; I’m going to find the right words to describe how I feel. I choose not to let all of this weigh me down.
I have come to a stage of acceptance of my illnesses in my life. All of my conditions are chronic, with no cure. But despite that, I lead a rich, fulfilling life. I have love. I have a wonderful hubby. I have a great family. I have great benefits. I have two wonderful dogs. I have friends willing to drive me around. I see all of my blessings and I give all the glory to God.
When I was an infant, I was in congestive heart failure at two months old. They told my mom it was possible that my heart was incompatible with life. My mom was 23 years old and dealing with the fact that she might lose her baby girl.
Since then, it’s been me and my mom. Throughout all of the surgeries, all of the hospitalizations, the mental illness, the chronic illness. We are a team. My hubs joined the group about four years ago. We are the Three Musketeers. We have Friday Funday in the ER at least once every two months.
I’m at the point where I’m transitioning away from my mom and into my own family. But it’s weird because I’m disabled. I need extra care. I need multiple people on my team. I need my mom.
What I don’t need is negativity. What I don’t need is criticism.
I realize many of my spoonie friends don’t have the type of support I have. I read your struggles on a daily basis and know how hard you are fighting. I am fighting too. It’s all we can do sometimes.
My mom will always be there for me. I know this without a shadow of doubt in my mind. She will always make sure I am taken care of and that I am housed, clothed and fed. She has housed me for over a year now. I love my mom. More than anything.
It’s hard to make the transition from your family of origin to your family of your own. I still want my mom. I want her at all my appointments and all of my tests. When you are sick, you want your mom. It’s natural.
My mom is on my team, forever. And for that, I am grateful. So is my dad and my whole extended family. I have a wonderful family, for which I will be eternally grateful.
I know she suffers watching me suffer. It doesn’t help that she has two out of her other three children fighting their own battles.
But I am grown. I must do this. I must learn to take care of myself, but how does that balance out with my needs as a disabled person and my need for extra help taking care of myself?
We are still working out the details. We are still sorting things out. We are facing new diagnoses, new challenges. But I know we will get through.
We are The Three Musketeers after all.