// March 2nd, 2011 // No Comments » // Eric's Blog
I finally feel like I’m approaching “pro” status in being sick. Something that has not been easy, and has required a LOT of work and time put into it. I may be at the bottom of the pro level of being sick, but I think I’ve gotten there.
I was diagnosed in 2009…spent the next 6 months just waiting for the day I would feel better. They said it would happen within 3 weeks…eventually it had to happen, right? By the end of those 6 months I was in with a Lyme Literate MD and beginning to delve deeper into my tick borne infections and Chronic Lyme Disease. At that point he couldn’t say if it would be an easy case or a hard one, just that we would begin treatment and see how I responded.
2009 was my year of sweet innocence. Then 2010 arrived. I spent the new year’s eve alone in my apt, sick, watching TV and realizing I had about 30 days to be packed and ready to move back in with Mom. After 6 months of fighting to keep my home in Albany, while not working and paying for a Lyme Dr, I had no choice but to give up my apt and move in with Mom. It just happened that the day I began my IV therapy is the same day I moved in. (Talk about great timing.)
So I moved in with the idea this would be temporary, a few weeks to months until I was “better”, could return to work and get a new apartment and start my new healthy life. That was 13 months ago.
But that didn’t happen. The next 10 months or so were spent fighting unexpected complications instead of the Lyme, just to get me back to the place I need to be to fight the Lyme again. (Yes, that feels discouraging, but I’m so thankful I already have so much of it out of the way, and that this time I’m not going into this blindly, I know what I can expect.) So now we’re back to a point where we begin again where we were last summer, with treatments we know work. They may work a little too well as I plan on a lot of rough patches and sickness from the medicine.
But knowing ahead of time what is coming, it makes it easier and less scary because there is no unknown. At same time, while the unknown is scary, the known can be pretty scary too.
Now that 2011 is here, I’m prepared for this illness. I don’t have any plan of attack or secret cure to battle it. But after a year and a half I’ve figured out how things work. This year I’m organized. All medical receipts are in one location. I keep track daily of everything, from the meds I take to a generalized symptom list. I have a dry erase board up in the kitchen now, so I can make notes. If I wake up tomorrow with no memory, mom can tell from the board that I have a few refills to be called in and picked up. In addition, with the new iPhone apps I’m using, I can submit a daily or weekly symptom tracker. It’s pretty generalized, but shows any changes from day to day. The developer (who I’ve talked to) has submitted the changes for new version of the app. Included in an upcoming upgrade will be a comment field. The symptom info is great but what’s lacking is a narrative to explain any major changes.
I now spend my afternoons with post it notes marking everything as I go through it for the file it will end up in. I have the filing cabinet all the supplies and many folders already started. What is lacking is the time and physical strength to go through the piles and put them in the appropriate folder. Then I think that pile is just the past couple months, I still have all of last year’s paperwork packed in bins waiting to be gone through. That’s usually when I give in on the whole idea. But as it’s that time of the year to submit all my 2010 claims to insurance Ive been forced to spend time going through those bins finding what I need.
But this year wil be different. As I said, I’m approaching pro status in this game of being “sick”. It took a year and a half of being confused, searching for paperwork I couldn’t find, and wondering why nothing was organized to bring me to this year where I have a system in place. Right now that includes having 2 notebooks, with several colored pens for color coding my notes with me at all times. Slowly my phone is replacing those notebooks. By summer I hope to not have to carry a backpack just to leave the house.
It’s taken a long time to get from the beginning of this post back to my point. But here it is. While we all want miraculous recoveries, and to believe the IDSA is right and that 3 weeks of antibiotics will cure us, most of us know better. For those new to the disease, you are in the state of finding out exactly what the disease can do and what it can take away from you. I share the truth with you for honesty’s sake. When I got sick there wasn’t this huge online presence and support. All I found was conflicting info, and nothing that warned me what I could be up against. Now we are lucky for the help and support we receive from our “Lyme family”, as well as a plethora of information online to help us make an educated choice. One of the hardest parts about being diagnosed with this disease is finding out the fight you’re up against. With the Dr’s, with the insurance companies and most of all with ourselves, as we are left to fight the battle of our lives for our lives. So honesty in the journey is important, but should not act as a deterrent. Every Lyme patient will tell you the life lessons they’ve learned from being sick. The way their priorities have changed, the way they see the world now. No matter what stage of this disease you are in, it is a learning experience for each of us that struggle. But we have to pull ourselves out of our own struggling to find the good around us.
So we’re now in the 3rd month of this new year, my 3rd calendar year of ilness. I’m pleased with my note taking, keeping up my calendar, work towards a proper symptom journal as well as getting so much ready to be filed. But it gnaws at me daily how much work is involved, and that I should really start moving the important info to a safe place. 2011 will be a year of proper record keeping, balancing checkbooks, documenting everything from every appt and phone call, and the ability to have the info I need at my fingetips when I need it. But it doesn’t happen on it’s own, so each day I have to motivate myself to make a few steps forward.
It’s a little late to be giving advice to all of you for the new year, but never being a fan of New Years resolutions, this is as good a time as any to make the conscious decision to treat each day of suffering as a blessing from God (or whatever supreme being you believe in). As you take each day as a new adventure, finding ways to be grateful for the little things and the opportunities afforded us, you’ll eventually see you’ll begin to give more attention to the good and slowly let go of some of the bad.
That is my goal this week (to become a part of my daily ritual). I challenge each of you struggling so hard right now against this disease to join me. We are sick, there’s nothing we can do about that. It has already happened, there’s no going back. But that doesn’t take away our power to turn an awful experience into something positive. But that can’t happen until you allow the change to happen from within.