I have started and restarted this post many times. This isn't my typical tongue-in-cheek, goofy, entertaining fare. There are no punch lines, no giggles, no jokes. I debated whether or not I should even write it. Something about putting the difficulties of the last few weeks in writing makes it seem more real, and I'll confess there is a very loud part of me that spends inordinate amounts of time in denial.
Now that I've been unforgivably vague and mysterious, I suppose I ought to get to the heart of the matter. It boils down to this: Sometimes life gives you lemons. Sometimes it hits you in the face with a cast-iron skillet.
My cast-iron experience began about five weeks ago. I went to bed feeling normal, fine, peachy. I woke up the next morning and I could hardly move. Every joint in my hands and feet, my wrists and ankles, were swollen and stiff. They were red and warm to the touch. The pain… I can't even really describe it. I felt wiped out, like I had a flu bug or something. I assumed that's what it was and just kind of put up with it. Days passed and things didn't improve. Then weeks.
There was a pattern to my suffering. Mornings were terrible. The stiffness left me with the shuffle of an 80-year-old. My hands were so stiff and painful I couldn't open doors or jars or type. By midday the swelling and stiffness improved, though it didn't disappear. The pain never left.
I finally admitted to myself that, whatever this was, it wasn't going away and made an appointment with my doctor. Blood tests and exams and lots of waiting later, we had an answer.
This was not what I wanted to hear. RA is degenerative, often miserable, and incurable. There are some great treatments. The longterm prognosis, while not fabulous, is far better than it was even ten years ago. Strides are being made all the time and I cling to those possibilities. At the same time, I am struggling to accept the reality of this. I will be living with Rheumatoid Arthritis for the rest of my life. The rest of my life. There will be days when just getting around the house will be a struggle. I may very well reach a point where my joints have been deformed and destroyed by this disease. I already struggle to dress myself in the mornings. I can't use a can opener. Doorknobs… don't get me started.
The next months and years will be filled with more tests, with plenty of visits to the doctor, with good days and bad days. We'll be searching for the right combination of treatments and therapies and exercises and life adjustments for me. No two people are the same. No one treatment will work for every RA patient.
I am finding this is a battle with more than pain and physical limitations. This has already been an emotionally devastating experience. The future I'd always anticipated has changed, though I don't know yet how much, how drastically, or in what exact ways. I have never been one who enjoyed uncertainty. I am a planner and go-getter. Having to wait for answers and accept that some things are simply unpredictable has been very, very hard. I haven't told many people about this before now, in large part because so much about it is still uncertain.
I am also in a constant war with my own pride. There is something so humiliating about being out in public, whether at the kids' schools or the grocery store, shuffling along, depending on perfect strangers to open doors, pushing the grocery cart with my elbows because my hands and wrists hurt too much or are too stiff. I recently missed one of my favorite writing conferences and not entirely because of the physical pain it would have caused. The thought of limping around the conference, asking people to lift my bags for me or open doors for me or pry the lid off my pain meds for me, was more than my battered little heart could take.
And, on top of everything else, I am bracing myself for the inevitable flood of unsolicited advice I am likely to receive. Plenty of people will give me lists of things I have done to bring this on myself--foods I shouldn't have eaten, vitamins I should have been taking, etc. I'll, no doubt, be inundated with miracle cures and alternative therapies and reasons to ignore the advise of my extremely intelligent, expert doctors. Please don't be one of those people. Please. Chronic illness, whether physical, emotional or mental, isn't an open invitation for criticisms, sales pitches, or laymen's diagnoses and prescriptions. If those dealing with chronic illnesses want those things, we will ask. If we haven't asked, we don't want it.
I have a busy year ahead in terms of this illness and my family life and my writing career. I will be focusing my writing for now on editing and preparation for those books already scheduled to come out in the next 12 months. I likely won't be doing many signings or appearances, especially in the very immediate future. I cannot say when I will have something new ready to go. (What is coming out will be new to you, so that's something, right?)
I just want to thank all of you now for being supportive and understanding. I firmly believe there is a power in positive thoughts, in collective caring, and I am grateful for all those who have and will keep me in their thoughts and prayers as this new chapter in my life unfolds. You will likely hear more about it than you actually want to in the coming months and years, but words have always been an outlet for me. I hope that writing about my struggles will help me get through them.
In the words of one of my favorite Irish proverbs, "It is what it is."