Last summer my children spent ten days on the family farm. It was the longest time I had ever been away from them, but I had very little guilt about their trip. My in-laws packed each day with outings, games, and memories. When it was time for the kids to come home, David and Durenda made photo albums for each child that highlighted different times on the farm – playing in the barn, visiting relatives, and going to the fair.
While they were gone, I completely reorganized my house. I dug into closets, bagged up old clothes and toys, swept out the garage, and wiped out each cupboard. My house has never been in such fabulous shape. I had days of uninterrupted time to finally “catch up” on all the work that I never have time to do. It was heaven; I felt giddy with every new trash bag that I took to the dump.
This summer looks so much different. David is gone. Durenda sends my children letters in the mail counting down the days for “their annual summer trip to Indiana”.
“They can’t come by themselves, Mom,” Hugh has tried to tell his mom, “especially with Jess being sick. We just can’t swing it.”
Although I don’t feel good, I still decided to embark on a big project this summer. It didn’t seem big at first, especially with my best friend heading up the painting and decorating. But over the last seven days, I have gotten increasingly frustrated at how little I can do with RA.
Last summer I could move boxes, bag clothes, and spend sixteen hours a day working on my house.
This summer I am tired if I go to Target and try to make dinner. My aching joints remind me that I am not strong, after all.
Last summer my father-in-law drove ten hours one way every few weeks to see his three grandchildren.
This summer feels empty.
But I know there is life right now, too. I have to hope that there is joy to be found in my new limitations. The pausing and the “less able to do” will somehow make me richer in spirit and closer to the heartbeat of Jesus.
Jesus could do anything, but He spent a lot of His time listening, hanging out with His disciples, and talking about His Father. He didn’t spend hours organizing his stuff; He was too busy building relationships.
A little like my father-in-law, really.
Suddenly life seems more hopeful and full of potential. I can’t move bags, but I can hug my kids. I can’t cook a big dinner, but I can make a salad and listen to Hugh tell me about work.
Instead of focusing on what I can’t do, I want to focus on the things God is putting in front of me. Right now, in this moment.
This summer.
A summer of possibility.
I am really, really nervous about this week. The next few days is “HUGE PROJECT TIME” at our house and I am a little panicked.
Here is the list:
1. Move all children temporarily downstairs (sleeping bags, a few toys, small tv, etc…)
2. Tape off two upstairs bedrooms
3. Move furniture out of both bedrooms
4. Organize all toys, etc…
5. Paint bedrooms
6. Set up new rooms with new (well, “newly brought in from garage and spray-painted”) bunk beds
7. Buy needed mattress, bedding, desk for Jon-David’s room
8. Take four million black bags to dump/Goodwill
9. Organize all books on new Ikea shelves.
AHHHHHHHHHHHHHHHHH!!!!!
I can do this. Breathe, Jess, breathe.
Actually, Amanda is doing most of the painting and moving. Hugh is taping off the rooms. Beth is helping me with organizing.
So I should be calm.
But I haven’t ever tried to get a big project done while operating at my new RA normal. And my new RA normal is about 30 percent energy.
AHHHHHHHHHHHHHH!!!!
Okay. I’m going to drink another cup of coffee, reread my list, take another breath, and try to keep this in perspective.
It’s going to be fine.
*I’ll post some “after” pictures in a few days showcasing Amanda’s excellent decorating ability. I will not show “before” pictures because I DON’T WANT TO.
1. Go to Target and spend forty dollars on new Play-Doh.
2. Set up the play table in bathroom for easy clean-up.
3. Instruct children to play with Play-Doh for at least eight hours.
4. Occasionally yell at children to play nicely.
5. When the children are done playing, promptly forget about the huge mess in your bathroom until the next day.
(Repeat at needed throughout July and August.)
*Note the Tampons and US Weekly in the background…Also, the lack of toilet paper. Yes, this picture sums up my life.
Today I woke up and took a walk with my dog.
Today I prayed in my chair while sipping on organic Starbucks with Silk Vanilla Creamer.
Today I spent almost three hours working on lesson planning for the fall – my favorite.
Today I talked with my grandmother for two hours on the couch.
Today I played Bingo with my children.
Today I read “The Omnivore’s Dilemma”.
Today I tried to make homemade wheat bread.
Today Hugh and I ate dinner by candlelight after putting the kids to bed early.
Today we sipped on raspberry wine after dinner, kissing and talking about our future.
Today has been lovely, lovely, lovely from start to finish.
Bettie, my Bible study leader, encouraged me to make a thankful list about my life right now. Can I just tell you how MUCH I DID NOT WANT TO DO THIS???
“How can I be thankful for being sick?” I complained on Monday night a couple of weeks ago.
“You can be thankful your spirit isn’t sick,” she shot back, “and start there.”
Bettie is this crazy, wonderful gift in my life and she keeps pushing me towards Jesus even when I don’t want to go.
So, Bettie, here is my list (and it took me awhile to come up with it because of my overall spiritual immaturity…oh well) :
MY RHEUMATOID ARTHRITIS THANKFUL LIST:
- I am thankful that I have health insurance.
- I am thankful that I have a good rheumatologist.
- I am thankful that I have a loving husband who puts me first, even when he has a lot to do.
- I am thankful that I did not get RA when my children were really young. Babies – now that would have been really hard.
- I am thankful for a couple of good friends that I can be extremely honest with right now – even swearing at and being angry (really angry) in front of when I’m having a bad day.
- I am thankful for a shorter teaching day in the fall. I didn’t know I would need it – but God knew.
- I am thankful that Hugh has budgeted enough money for us to have a cleaning lady once a week. I am thankful that she helps me with laundry. This makes me want to cry.
- I am thankful that RA is not life-threatening.
- I am thankful that I didn’t have RA when Hugh’s father died.
- I am thankful that I live near farmer’s markets and Earth Fare – making my transition to an all-organic/anti-inflammation diet convenient.
- I am thankful that RA is teaching me to slow down and really focus on things that matter – like reading to Lucy and spending time with my grandmother. These are things I’ve always felt guilty for not doing. Now I understand their value more. I only have so much life to live, and RA is teaching me that daily.
- I am thankful that I am starting to believe that God is allowing this to happen because He has a purpose for me in this situation.
Does He want me sick? No.
Is He going to use it to make me more like Jesus? Yes.
And I will “consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don’t try to get out of anything prematurely. Let it do its work so you become mature and well-developed, not deficient in any way…” (James 1, The Message).
The Word tells me that tests and challenges are a gift. A GIFT.
So today, I’m choosing to be thankful.
Hugh and I ended up staying two nights in Greensboro because:
1. We have the best babysitter on the planet. “Stay another night,” she said as we were leaving. “Sounds like it’s going to be a full day on Saturday.” I love you, Beth!
2. Hugh decided to be spontaneous and get us a room at one of the most fun hotels I’ve ever stayed in. The O. Henry Hotel has great rooms, gives copies of O. Henry’s short stories away to each guest, and has a killer hot breakfast.
After two nights away from my children and home, I am returning to life completely reconnected to my husband – something that hasn’t happened since April.
The only difficult part of my weekend was trying to stay faithful to my anti-inflammation diet. I actually missed my kitchen full of organic fruits and vegetables. As soon as we got in the door, I ran over and grabbed an organic rice cake.
What’s happened to me?
I live for animal fat and processed sugar, right? Yet I longed for soy creamer in my coffee this morning. And whole wheat bread instead of sugary pastries. I even thought about asking our waiter if they had Stevia for my Irish Oatmeal.
Somehow over the last few weeks I have learned to enjoy making healthy eating choices. I am so stunned…wondering how this is possible…and I hesitate to even type the words out.
Being sick creates a lot of motivation to make drastic lifestyle changes. All of a sudden, the usual “Ben and Jerry’s because I had a hard day” or “loaded baked potato because I have a crush on cheese” meals have lost a lot of appeal.
Now I want to be healthy more than I want to enjoy foods without restriction.
Someone told me recently that the best way to live a long time is to get a chronic illness. “You just start caring about your health.”
They were right – and this weekend showed me that I care about healthy eating even when it is difficult.
Now I’m off to go have another bowl of Spinach Pasta with Feta.
Yum-o!
p.s. the title of this post comes from HOW MUCH WEIGHT I HAVE LOST SINCE I CUT OUT PROCESSED SUGAR AND ANIMAL FAT FROM MY DIET. Yippee!!!!
Hugh is in a wedding today. We drove up last night to Greensboro and spent an evening full of wedding rehearsal . My favorite part of the rehearsal was watching Hugh attempt to bow at the front of the Catholic Church (”in honor of the Eucharist,” the large wedding coordinator commanded). He has never looked more Protestant.
I am grateful to be here with him. My doctor gave me a shot yesterday to eliminate some of my fatigue and pain while my long-term RA meds begin to work. I began feeling the effects of the medication after a few hours, and I felt almost normal.
As I watched the rehearsal, I noticed my husband for the first time in a few weeks. I’ve felt so weak that I haven’t really looked at him lately. Gosh, he’s so attractive, I thought. Hugh stood solemnly at the front of the church, grinning when he’d catch my eye where I sat watching in the pew.
The priest went over the vows. “For richer or poorer…better or worse…in sickness and in health…” Hugh caught my eye again and smiled.
My eyes welled up with tears, and I smiled back. Ten years of marriage, and we’ve seen richer, poorer, better, worse, health..and lately, sickness. When we stood together in Hopwood Chapel nearly a decade ago, we did not understand the depth of the commitment we were making to one another.
Yet day by day, even when life has gotten extremely hard – the way life seems to do – we’ve gotten a little stronger, a little wiser, and a little closer.
With the pain that comes from living – the losses, the unexpected illnesses, the financial hardships, the tough decisions, the late-night phone call giving you devastating news – comes the joy. The joy of watching a bearded man walk carefully down the aisle of Our Lady of Grace, every movement of his body familiar.
Every day with my husband is a gift: the better days, the worse days, the sick days, and the healthy ones. It’s life – and we live it together.
The day Hugh and I got back from our ten-year anniversary trip to the Oregon coast, I broke out in a rash. Over the next few weeks, I developed a fever and severe joint pain. I have spent a difficult few months going from appointment to appointment, looking for answers.
Fourteen days ago, my new rheumatologist told me that I had some form of rheumatoid arthritis. She wasn’t sure which type – there are several kinds of autoimmune inflammatory arthritis and there were more tests to run. In the meantime, my symptoms got worse and I have spent most of the last two weeks in bed.
Today I went to see Dr. Z. again. She had all my lab results and we were finally able to map out a medication plan for me. This is wonderful news because:
I AM NOW STARTING MEDICATION!!!!!!!!!!!!!
GLORY, GLORY, HALLELUJAH!!!!!!!!!!!!!
Every person that I have talked to with a chronic autoimmune condition encourages me that my life will get better once I am taking medicine. That small hope has kept me going as I have spent hours staring at the ceiling, wondering if I will ever get out bed again and be able to work or care for my children.
But today I am beginning immunosuppressants!!! Woo hoo! This heavy duty medication is designed to target certain parts of my immune system – the parts of my body that are “over cleaning” some of my joints, causing swelling, pain, and loss of movement.
I never thought I’d be so excited about starting on medication…Ever. But after these last few months, I am crying with relief at the thought of this medicine. Maybe soon I will be able to go on a walk! Cook dinner! Have sex! Go to church AND Sunday School! (Um, no one else I know talks about sex and Sunday School in the same paragraph. I’m so odd – but also in a GREAT mood!!!!)
So, today I am REJOICING!!!! Rejoice with me! I am going to be on DRUGS, people!!!
Hallelujah!
Now I’m off to calm down and dream about what life looks like when I’m actually living it.
