My family is in mourning, but no one knows. We are fortunate that we haven't lost a loved one. What they mourn is life as we knew it just a short year ago.
Sometime in the last few months, dawn has broken and my family has realized that I may not ever be who I once was. At the risk of sounding brash, I was the spark plug of our family life; the one who had ideas, planned & executed gatherings, cooked too much food, urged the grandkids to try new things, and cared for those who needed help. I was Type A and proud of it - my mantra was "let's make it happen!" My family is seeing what I have known for a long time - this rheumatoid arthritis is not just an illness that you treat and it goes away.
Since my diagnosis with ra (I am now refusing to grant it capitalization in my blog - take that!), I rarely have the energy to make more happen than personal hygiene and basic household chores. In fact, as I type this I'm sitting in my pajamas at 1:20 in the afternoon because I'm not quite up to showering & dressing "for the day".
I have left my job, stopped my volunteer activities, and essentially become the last person they can count on, because I never know what pain, stiffness and fatigue each day will bring. I often have to cancel plans at the last minute with family and friends. It's just the nature of the disease, and frankly, I have become very selfish of my energies because I've found I fear the payoff if I overdo. Two of my grandsons came for their week at Nana's in June and determined to make some fun for them, I was too active - I spent the next 10 days in the worst disease flare I have had since starting treatment. I can actually see the damage that those 10 days caused when I look at my hands. I simply can't risk that happening again until I find a medication that is suppressing my disease activity better.
So, I have a plan (Type A all the way). After resisting, studying, soul-searching, vacillating ... I have decided to take my doctor's advice and start one of the new biologic drugs for ra (didn't forget, you won't get a big letter out of me!) I hate the idea of putting that crap into my body for many reasons, but mostly because it's so new and no one knows what the long-term effects can be. I have decided to choose hope of improvement over fear of what may be.
And I've decided to choose a chance at returning to the person I used to be over the safety of being the person I've become. Because I want my family to mourn me after I'm gone, not now.