I have had difficulty with the idea of "after the surgery." Since everyone is different, every recovery is different and not knowing how I will feel 1 day, 1 week, 1 month, 2 months, 6 months out is frustrating. For those going through the process you want to know as much as possible and you can know everything (or try to) about the surgery and about your condition, but you cannot know the future and how your body is going to respond. Even among those who have had the surgery multiple times, each surgery has a different recovery time and feel.
I am personally scared of the boredom and the pain. I want to have fun during the Christmas season and not be sad, drugged up and in misery the entire time. This has become the primary stress so I have created a specific solution to address it. This solution does not always take away the anxiety, but it gives me hope and something for which to look forward.
My creation: a wall in my room with sticky notes devoted to activities and gifts I am going to give myself before and after the surgery. They are ways to reward me for what I am about to go through and what I will go through. Even though this surgery is going to hurt like a monster, I don't have to be filled with dread, but can also be filled with excitement because I have fun activities to which I can look forward.
Being the 19 year old young woman I am, these include:
- Getting a gorgeous diamond necklace to show off my scar (surgery, Christmas and birthday present)
- going to see Christmas lights in my car
- listening to Christmas music CONSTANTLY
- Spa days!!!
- having my mom read the entire Harry Potter series to me from when I wake up in ICU until we come to the last page (yes I'm a bit of a nerd).
- Crowning myself Queen of Christmas Land (our house) and making sure the Christmas spirit is Merry and Bright in the Buchanan household
- Going to church on Christmas Eve, even if I have to sit in a wheel chair in the back row. If I can't make it, I'll have Eucharist brought to my home
- Going to see the new Narnia movie if its out
- Watching "Christmas Vacation" (before the surgery so the laughs will not kill my chest)
- Walk or ride down our road every day that I feel able
- On the one month anniversary, walk around the neighborhood
- "High" coloring with my best friend in the hospital (these will be beautiful expressive pictures of which I will have no memory)
- Going to the mall (wheelchair, and probably wearing a mask) just to appreciate the fun hustle and bustle everyone else is experiencing
There are more, but I will not bored you with those. This is one of my many coping mechanisms which focuses on the recovery fears.
As for my anxiety about the surgery and long term worries, I have found INCREDIBLE resources that have helped me work through some of the stress and continue to be a comfort to me.
- The first is the American Congenital Heart Association. I became a member and through my membership received packages of information about my defect, the services available, where doctors and clinics were located etc.... If you are not already a member, BECOME ONE! Here is the website: http://www.achaheart.org/
- My Ambassador. This is a program offered by the American Congenital Heart Association for patients who are preparing for surgery or just receiving a diagnosis. My ambassador is there for me in whatever way I need. She and I email and Facebook all the time and she constantly provides support for me. Whenever I have a question or worry she is able to share her own experience or use her expertise to calm the stress. She is not a doctor and will never provide medical advice, but has given me all the information I need to be the best patient I can possible be. Here is the link to learn more about Ambassadors and to get your own (if you are going through this experience like I am): http://www.achaheart.org/resources/for-patients/heart-to-heart-ambassadors.aspx
- Finally, the Facebook communities I have found have been such a tremendous help. These groups allow patients (and in some, family members) to talk about the issues they face, ask advice and questions of other CHDers. . I love these groups because I am able to find out so much more about all the diverse disorders and symptoms and to feel the support of others going through the exact same thing that I am. These groups include:
- https://www.facebook.com/groups/womenwithchd/ (exclusive to Women with CHD, you will verified after requesting membership)
- https://www.facebook.com/groups/301558156578389/ (for people with CHD as well as family members and loved ones. My mother LOVES this group)
Another mechanism for coping is to see a counselor. I have one on campus who has been such a tremendous blessing. She is able to help give ideas for coping and dealing with the stress and is always ready to offer a sympathetic ear. Without her I have no idea where I would be in this whole process. She has been one of the most influential voices throughout this process.
My final piece of advice is to embrace your community of friends and family and let them support you. Also, distract yourself with hobbies, books, movies, shows etc. Let the community lift you up in love and save time to appreciate yourself. You are going through a lot and you need the support of your friends and the slower, relaxed pace for yourself. Take this surgery prep as a time to get in tune with your person and to recognize and support yourself as an individual.
Now that I have written a dissertation sized blog post, I will leave you with a quote to give you strength for your day.
No, I think I'll just go down and have some pudding and wait for it all to turn up.... It always does in the end. - Luna Lovegood, Harry Potter and the Order of the Pheonix
(You guessed it, Harry Potter!)
While out of context, remember to enjoy life right now, and just let go of the worry of the upcoming surgery. I still am still anxious, but like Luna, I know things will turn out great in the end :)