Friday, September 30, 2011

Planning for the Future

A few weeks ago, I wrote a post entitled 'If I Should Die Before I Wake.' It may seem morbid to some, but to me, it was a way to express some things that are important to me. Chronic Lyme Disease is unpredictable. Symptoms can come on suddenly and, in some cases, be quite severe. But, as important as it was for me to write that post, it is even more important to write this one.

You see, I may not feel well now, but I am fighting for my health and the health of my children, so that one day we can truly live. We're thinking positive. We're looking ahead. We're making plans for the future! And I've made a list (because I do that.) Here it is...

Make A Difference
When we get our family to a good place financially and our health is much-improved, we will help others whenever we can. I will be that anonymous person who donates $500 to a family in need. Or make dinner for a sick friend. Or host a fundraiser to help raise much-needed funds. Or send a note to bring some light to an otherwise dark day. I'd like to volunteer more and teach my children the importance of helping others. We have been so touched by the kindness of others and look forward to paying it forward a million times over.

We have an amazing family and we have been so grateful for the love and support they have given us through this ordeal. We will be there for them if and when they need us, but we also hope to spend more time with them, especially our awesome nephews! Family is so important and we want to treasure every moment we have with them.

Fight, Advocate and Educate
Most doctors are not educated on Chronic Lyme Disease and therefore many, many people are going undiagnosed or are being misdiagnosed with Alzheimer's, ALS, MS, Autism, Fibromyalgia, Chronic Fatigue Syndrome, IBS, Ulcerative Colitis and more. Claims from Lymie's are rejected by their insurance companies after 30 days of treatment. The exorbitant costs of treating this disease are bankrupting families, even making some homeless. Some just don't treat because they can't afford it. This is an outrage. I vow to fight with my last breath for an overhaul on how doctor's are educated on this disease, how patients are treated, how their treatment is covered and how people are educated about this disease. There is no reason for this disease to be as endemic as it is. Something must be done!

Take Less For Granted
Everything is relative. I get it. But, when you go through something like this, you start looking at life so much differently. You find the things that used to worry you seem petty and small. You start looking at people differently, wondering what battles they are fighting that would make them so angry or sad or distant. I know I'll have my moments when things get me down. But, I know in my heart that I am forever a good way.

Right now, it takes a lot of energy to talk and walk, let alone find the energy to laugh. Our kids help us in this area, but we still don't laugh nearly as much as we should. Laughing is therapeutic in itself, so I should make more of an effort. But, it is hard to muster joy when you feel awful! I know when I feel better, laughter will just come naturally. But, I'm putting it on the list anyway.

Travel has always taken a lot out of me. Chronic fatigue worsens when exposed to stress, pressurized cabins and altered sleep schedules. So, traveling is not always enjoyable. I look forward to the day when I can travel with my family and not feel worse than I do on a normal day. Japan, Ireland, Paris, Italy, St. John, Hawaii, Seattle, New York City...I'd love to take my children to all of them, plus more. And they would love a Disney Cruise, so I hope to get them on one before they are teenagers and it is no longer 'cool.' Right now, all of this seems so out of reach...physically and financially, but I'm putting it out there. Why not? Might as well DREAM BIG!

Don't get me wrong, I play with my kids. But I want to have the energy to run outside, play catch without getting winded and walk around the block (or across the room) without needing to sit down. I want the mental clarity to create stories, come up with fun games to play and help boost their imagination. Right now, they watch a little too much TV, but it isn't forever. Hopefully soon, we will be running and jumping and playing hopscotch and pretending to be pirates and creating more art projects than our walls can hold.

Enjoy The Arts
Plays, Dance Performances, Musicals, Concerts, Cirque du Soleil, Blue Man Group, Art Festivals, Museums...I love them all and want to introduce them to my children. There is nothing like a powerful performance to move and inspire you and I hope they can experience that magic!

I love to read! When I was younger, I would read book after book. As I got older (and sicker), reading became more difficult. I would find myself re-reading the same paragraph over and over and over again and not retaining anything. Or I would look at the page and all of the words would blur together. I miss reading...and right now that stack of books I've been meaning to get to will have too wait a bit longer. But, I will get back to it when I feel better and I can't wait to lose myself in them. Up first...Kingsolver's newest work!

Get Creative
I've always loved creating things. Just like with reading, however, brain fog, fatigue and shaking hands have taken this favorite pastime from me. When I feel better, I plan to make time for crafts with the kids, mosaics, dance lessons, Soul Collage, scrapbooking, art classes, photography classes, drawing and more. I think I will enjoy it even more because I haven't done many of these things in some time, but also because I worry a lot less about what people think. I feel my art would come from a much purer place and that freedom would make it so much more enjoyable.

Before my diagnosis, we weren't doing bad financially, but we weren't prepared for the financial nightmare that awaited us. Once we get on the other side of the never-ending medical bills, we will save, save, save. We need to. There is no cure for this disease, so we must be prepared to fight it as the need arises. Plus, the things on this list cost money and I don't want anything holding me back from my dreams...or my children's from theirs.

Face My Fears
Losing someone I love. Public speaking. Spiders. Heights. TICKS. When you have Lyme and co-infections, anxiety and paranoia come with the territory. But, they were some of my first symptoms, so I've had them for a looooong time. And let me tell is no way to live. I need to learn to let go of my fears and live in the moment!


I've learned that you don't get anywhere by playing small. And I don't go down without a fight. This is one fight I intend to win. So, get ready kids...things are going to get better. They may get worse first, but we are strong and we have a lot to look forward to!


  1. Love you friend. You will have/do all of those things. Keep fighting. XOXOXO