Yesterday was an unusual day. Want to hear all about it? Have some time? You do? Pour yourself a cuppa and settle in. It's a long story.
So it all began with a morning appointment with my internal medicine doc. She and Dr. Young Guy
have been inflicted with taken on the task of managing my care together, and her attitude is amazingly empathetic yet honest.
I love how she has dry-erase boards on her exam rooms and has her nursing assistant write the patient's names there. I kind of feel like I do when I shop at clothing stores that reserve a dressing room for me and label it with my name.
Well. Kind of.
I went to see her because I've been having an increasingly difficult time with the symptoms from restless leg syndrome and peripheral neuropathy in my hands, thighs, calves, and feet. I was and am not happy about it, to put it mildly.
It's so strange, peripheral neuropathy. Everyone's experience with it is different, but mine goes like this: I feel as though my muscles in my legs and feet are constantly twitching and my skin feels as though it's vibrating. It feels as though if I were to sit quietly in a pool of water that the surface of the water should be rippling with all the movement that I feel in my lower limbs. But here's the weird thing - the surface of that water is smooth because my muscles and my skin aren't moving at all. It just feels as though they are and this drives me crazy. I can deal with this during the day because I'm doing stuff that can direct my attention elsewhere, but these strange and uncomfortable sensations are exponentially worse at night. They really are.
Every night, I slug down my medicines and ease myself into a bed that has a lovely mattress and plump pillows. I have a snuggly schnauzer next to me and of course, John. As I stretch out and pull up the covers, I'm always naively optimistic. I really am not that uncomfortable, I think. Maybe tonight I will be able to sleep. John and I hold hands and say our prayers and I feel a lovely drowsiness begin.
Then it all starts. Bah.
It begins with the creepy wiggly feelings intensifying bit by bit. Then the burning in my feet ramps up and if I don't have my covers propped up so that they don't touch my feet, the sensation becomes even more painful. The indescribable restless leg symptoms begin - just faintly at first - but become more pronounced until I find lying in bed completely intolerable and I just have_to_move_my_legs so I irritably throw the covers aside, stuff my burning feet into my slippers and head downstairs.
I pace. I sit. I watch TV. I read. I meditate. Sometimes I draw a basin of warm water, dump in some epsom salts and soak my tootsies in it. All of which helps marginally, but not enough for me to consider sleep even remotely possible. This routine continues without fail until somewhere around midnight, or one, or two AM, I feel all the weirdness begin to recede a bit and I finally can get back into bed and wait for sleep to come. Dozing off in the wee morning hours wouldn't be completely intolerable except that the three or four hours that precede it are downright painful. And this make me very cranky.
Then there's the daytime neuropathy incidents which are not only embarrassing, but potentially unsafe. I have a distinct tremor in my arms and hands and it's oddly more pronounced in my left hand. And of course I'm left handed. Which is mildly entertaining when I'm trying to put a spoonful of soup into my mouth and instead of being eaten, the spoon contents are dribbled on the table and anything else in the path between my lips and the bowl. I'm wearing lots of scarves these days, not as a fashion statement but as multi-colored large bibs handily tied around my neck. What a great goober hiding accessory. Aside from the goober/embarrassment factor, I worry about dumping something dangerous onto my person or someone else as a result of my tremor -- like a big mug of steaming coffee, for example.
I shared this all with Dr. P. and bless her heart, she sat eye-to-eye with me watching and listening intently. She told me that she was so sorry to hear that I was having real troubles right now and that she wished that she could make things better. And then she said this: "I believe that all these symptoms are - if not created by - then made worse by your immunosuppressant CellCept. I know that your lupus symptoms are not controlled unless you're taking it, and that you and Dr. Young Guy have tried many many other drugs without success. So we're kind of stuck here."
What are my options? I need to sleep! If only I could make it temporarily better at night, I could live with the rest during the day!
"I know. Here's what we need to do. In an ideal world, I'd encourage Dr. Young Guy to take you off the CellCept. But I know that right now that's probably not a good idea since we know that your other choices of medications to keep your lupus in check are limited. So we're going to have to just experiment here. I'm sorry."
"How about this: we will increase the dose of Neurontin that you're taking which will hopefully diminish some of these symptoms. And we need to get you in to see Dr. YG soon so that he can evaluate these symptoms as well. Perhaps there is another treatment alternative for you that you haven't considered."
I eyed her skeptically and wondered to what other treatment she was alluding. She patted my arm and said that we would continue this discussion, and not to despair. We'd find something to make this if not all better, then at least tolerable.
See why I am so lucky to have her on my team? What a gal. My appointment with Dr. Young Guy is tomorrow.
In spite of her reassurances I left the clinic feeling as though I was walking under one of those dark grey cartoon clouds that pour rain over the character's head constantly. As I gloomily slogged my way to the car and slid into the driver's seat, I just felt so tired. Tired of it all. Tired of being sick. Tired of every aspect of my life being dictated by my weirdo auto antibodies running unchecked through me. Tired of....well, everything.
I know. I'm being overly dramatic. I know that I'm blessed beyond belief in other areas of my life, namely family and friends and medical care.
But here's the crux of the matter: I know that neuropathy isn't a life ending problem. Neither is many other aspects of my disease. But there's so many THINGS involved in AI disease. Dozens of bothersome THINGS. And the appearance of ONE MORE THING added to my roster of autoimmune related garbage THINGS is kind of depressing.
So. I thought seriously about what the rest of my day would look and feel like as I sat in my car in the clinic parking lot and watched it rain. I figured that I needed an attitude adjustment big time. I had a few choices of cheering up strategies, the front runner option initially involving Rose's Deli, a fork, and an extremely large chocolate cake.
But then I thought about how hard John and I have been trying to eliminate those kinds of foods for the last ten days and about our commitment to stick with a healthy diet for a whole month. We'd come one third of the way. What a shame to just trash all of that good work just because I need to make some kind of medication adjustment, I thought. Hmm. What else would work almost as well? Suddenly an inspiration struck and I knew just what I needed.
It's extraordinary how some simple pampering changes everything, isn't it? I walked into my favorite nail salon and had a wonderful manicure and thoroughly enjoyable hand massage. Ahhhh.
I knew that I was definitely onto a seriously excellent mode of mood therapy and decided that the afternoon was young and that there was a whole world of pampering out there just waiting for me.
So I headed over to a trendy hair salon and asked for a shampoo and style. Unbelievably, they had a stylist free. "How would you like your hair styled?" she asked. I told her that as long as it didn't involve cutting, coloring, or a perm, that she could call the shots. I wanted something fun that was purely temporary. I'd need to be able to wash it all out and be plain old me by tomorrow.
She laughed and said she thought that this would be fun. So while I sipped bottled water she shampooed, scalp massaged, moussed, sprayed, blow-dried, teased, combed, and curled all while engaging me in light and highly entertaining conversation. In short, this woman was a real pro. The hour we spent together was wonderful and I left the salon feeling strangely giddy. The style she chose was curly beyond belief and something I'd never have asked for; but it was exactly what I needed. Pouffy. Sproingy. Silly.
Deep red nails. Floofy goofy hairdo that was completely temporary. Brilliant.
As I made my way back to the car, the sun broke through the clouds which boosted my sprits even higher. I spotted a boutique and impulsively strode in, bought a bright pink scarf and draped it around my neck. By the time I reached the car and was backing it out of the parking spot, I was whistling.
Like straw in the winnowing fan
I toss up my prayers to you, O Lord.
My arms are tired, hands are weak, Reaching for your answer;
But I cannot stop.
My hope, my faith, do not quit.
The wind of your promise does not still. My spirit does not lose your breath. Living Spirit, blow through me,
Make bricks, make answers
From the straw that are my prayers.
As long as you have faith in me,
I shall have faith in you.
I believe you are my Shepherd.
I believe I shall not want.
@2015 Chaplain David Rapp, B.C.C. CHI Franciscan Health Tacoma,WA
I'm thinking that my prayers for the day were answered. What a fortunate woman I am.