Tuesday, August 9, 2011

Cover the Mirrors, Don your Black Threads....

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.


Deb aka murphthesurf said...

You describe the loss we all encounter so well. (((HUGS))) for your loss. And if you haven't already consider, please think about applying for SSDI if you haven't already as there is a time frame by which you must apply. Most people don't realize this and I saw you left your job. I did Enbrel for years and it worked fairly well for me and maybe that might be a good option for you.

kimcollison said...

2 years into this unexpected adventure of ra, and you are the first person who describes what my body and mind are experiencing-you made me laugh, made me think, and gave me a bit of strength to maek it thru the next week-
my best to you in your journey-

The Rheuminator said...

Thanks so much for the advice on Enbrel murph - it is such a comfort to me that so many of those who have been where I am now are so open and willing to share their experiences.

Thank you Kim, for your kind words! *blush* Our shared experiences help to make living with this isolating disease so much easier.

Anonymous said...

Sorry about the diagnosis. I'm into this for 12 years now. Fought it, hated it, grieved, but in the long run I started on Remicade and then when that wasn't enough I started on Methotrexate pills. 10 years on, I'm on Enbrel and Methotrexate and take 100mg Celebrex per day plus a handful of vitamins. Took me awhile, but I'm feeling awesome!! I wish the same for you. Keep at it - read as much as you can and keep kicking and screaming and hopefully some of the meds, some natural therapies, good luck and perseverance will get you to a better place!!

Carla said...

Good luck to you on your journey. The choices we have to make are difficult. Take heart in that many, many of us have been helped lead productive, active lives because of the biologics (me included). I'm glad I found your blog, please keep us posted on your progress.

The Rheuminator said...

Thank you phat50 and Carla. I am still stumbling toward acceptance, and experimenting to find my "magic potion". Advice from those who have gone before me is so important and so appreciated. :)