Diary of a Chronic Pain

I was diagnosed with Rheumatoid Arthritis in November, 2003 at age 43. This is a diary of my thoughts on living with daily chronic pain: its effects on my relationships, activities, outlook and faith life.

Monday, September 05, 2005

JPII on Suffering

Faith in the fact that we are sharing in the sufferings of Christ, [Pope] John Paul II says, gives a person "the certainty that in the spiritual dimension of the work of Redemption HE IS SERVING, like Christ, THE SALVATION OF HIS BROTHERS AND SISTERS. Therefore he is carrying out an irreplaceable service. In the Body of Christ, which is ceaselessly born of the Cross of the Redeemer, it is precisely suffering permeated by the spirit of Christ's sacrifice that is THEIR REPLACEABLE MEDIATOR AND AUTHOR OF THE GOOD THINGS which are indispensable for the world's salvation. It is suffering, more than anything else, which clears the way for the grace which transforms human souls. Suffering, more than anything else, makes present in the history of humanity the force of the Redemption" ("Salvifici Doloris",27).

Navarre Bible Commentary on Colossians 1:24-2:3

Sunday, June 12, 2005

Doing a 180

You know what it's like, we all do. You have a sore toe/finger/whatever... and suddenly that's all you can think about. You bump it on everything and it hurts! You're surprised by the pain every time you hurt yourself. It's not normal. You can't wait until it's healed and you don't have to be so careful with it. When you don't hurt you take the absence of pain for granted as the way life is. Pain is an anomaly - something that shouldn't be there, something we forget about until it happens. And when it happens we're surprised.

That's what life used to be like for me too.

Now that pain is a way of life for me - it's become the normal daily experience. What's become surprising for me is feeling good. Every morning I wake up and wonder which part of me will hurt most today. Not feeling sorry for myself, just a morning routine, part of my daily reality check. If I get out of bed and my feet don't hurt I'm surprised! What a gift! I can walk to the bathroom without wincing and shuffling! If I can lift the milk gallon out of the fridge without my shoulders hurting, yahoo! Another gift! I have so much more to be thankful for these days than I did when I took life for granted. It's become an opportunity for giving God praise and for deeper personal reflection and prayer.

Funny how much we take for granted until we have some kind of wake-up call in life. Good health is a gift, but we take it for granted until we get sick. Life itself is a gift! We take it for granted that we'll wake up every morning. But some morning in the future we won't wake up. And we'll have been given a greater gift - eternal life. No more taking good things for granted. No more pain. And all the time in the universe to praise and thank God for all the gifts, large and small, we've been given. But don't wait until then, and don't wait until you lose the gifts to thank Him for them! There's no time like the present to do a 180. Just turn around and look deeply into the eyes of the people you love the most - and tell them you love them - every day.

Tuesday, June 07, 2005

Falling Apart....or, Welcome to my World

"How are you doing? You look great!" I've been hearing that a lot lately. Few people know what to make of me - I don't even know what to make of me. On the outside I look pretty normal. Most of the time I'm smiling and cheerful, dressed neatly, makeup on, going about my normal busy life - not grimacing in pain, not even limping. I even fool myself into thinking I'm just fine and normal.

Then I fall apart.....

I feel so good I don't bother to take a nap, or take it easy. I run one too many errands, stay up a little too late or get up too early. It's an easy mistake. After all, I feel fine, I look fine and I've got a lot to do! I'm the mother of seven children. I've been home educating them for the past 14 + years. Three have moved on to university and adult life, four are still at home and the youngest one is only 6. I run a home business, publish my own homeschool curriculum and have a large circle of friends. I don't have time to lay around when I feel just fine. But if I don't, I fall apart....

Two years ago right now life was really, really good. A year earlier our family had moved to the area I'd dreamed of living in for the past 10 years. We'd found a new house in an semi-rural suburban neighborhood near church and friends after 8 long years of isolated life on a hobby farm. I was back in "civilization", the kids could finally get together with friends on a regular basis, I was exercising regularly, losing weight and feeling better than I'd felt in years. It seemed that life had finally come together for us and we were the happiest we'd been in years.....
Then things began to fall apart.....
The house fire happened on July 15, 2003. We were home, we all got out, even the cats escaped safely. But we lost nearly everything we owned, the dream house was destroyed, we didn't even have shoes on our feet............. The fire wasn't the worst part. It was the aftermath. The insurance adjuster. The ambulance-chasing construction companies. Not knowing if we could trust any of the people sent by the insurance company to "help" us. The well-meaning advice that overwhelmed us. The shock of adjusting to sudden homelessness and trying to keep our family of nine calm as we found a place to live and attempting to deal with the sudden unexpected decisions of life after a disaster while still going to work, having to eat and keep children happy and occupied while mom and dad tried to sort through the debris (literally and figuratively) of life. STRESS..... Friends commented over and over - you're handling this so well, you're smiling, you're functioning, I can't believe how well your family is coping with this! I was so busy coping I didn't even realize how stressed I was.

Three months went by, we were still dealing with trying to get the house torn down and rebuilt, still fighting with the insurance company and trying to chose a contractor that we could work with and who could handle the insurance complications. And my wrist began to ache. Every day it hurt more. Then my ankles swelled up. They looked like they were sprained. They ached, they hurt, I couldn't fit into my shoes. My wrist still hurt too. The doctor was pretty sure it wasn't congestive heart failure. He hoped it was 5th disease. He was pretty sure, though, that it was the start of rheumatoid arthritis. By Thanksgiving I was sure. In December I started the methotrexate and prednisone treatments along with Vioxx. January, 2004 I was finally able to get in as a new patient to a rheumatologist. He also hoped it was 5th disease because that can very closely mimic the symptoms of RA but is temporary. Well, it's a year and a half later and it's permanent.

Most of the time I function pretty well. At first it was really bad. I slept about 16 hours a day and was exhausted when I was awake. I hurt everywhere. I couldn't walk far and started using a wheelchair when I had to go to stores for errands. The cold winter made my joints stiff and painful. For a while I couldn't drive and had to rely on friends and family for childcare, help with housework and errands. Meanwhile we were rebuilding the house and I was acting as assistant general contractor as well we doing the massive paperwork involved in a big insurance claim, as well as running my home business to prove to the insurance company that it would be viable so that they would pay for the total loss of my pre-fire business. STRESS

It takes a long time for RA meds to kick in and make a difference. Then, once they start helping your body adjusts to them so you have to either take higher doses or change to new meds and wait for those to kick in, the usual adjustment period is 6-8 weeks. Meanwhile you suffer. I can deal with the pain, it's not usually too bad. It ranges from achey to acute. And it moves from place to place all over - every joint is a target. But RA isn't just arthritis, it's not just about joints. It's an auto-immune disease, which means my own immune system is the enemy. Instead of protecting me it's attacking me. So it has to be calmed down. If it's not stopped it won't stop until it's "won the war." The rheumatologist says the average for untreated RA is 5 years til you're in a wheelchair and 8 years til you're dead. Yes, there are the exceptions and the miracle stories. And other options besides the heavy-duty meds, many of which cause their own damage to the body. But first we had to get my system calmed down and under control. It's called a flare-up and it basically means that my immune system is on constant heavy attack. So the meds do double duty: decrease the swelling that can cause permanent joint damage and get the immune system to call a truce. The tricky balance is to take enough meds to do the trick without harming my liver and kidneys (these drugs are also used as chemotherapy to fight cancer) and not take such high doses that my immunity is seriously impaired and I start getting sick from the immune-suppression.

This past February I caught the flu - a really mild case. But the after-effects went on for several months. From February 6 to May 5 I literally had two days when I felt good. It's June now and I'm still suffering from a chronic bronchial asthma that began with my little bout with the flu over four months ago. That's life with RA.

The biggest adjustment after dealing with the realization that I'm going to be dealing with a chronic, incurable disease for the rest of my life (I'm 44), is the adjustment to lifestyle. I can't do much. When I don't do much I feel pretty darn good. But my stamina is so low..... if I try to live my normal, pre-RA life for more than a day or two (at the most) I begin to hurt all over, can't sleep at night, shake, get nausea and "the runs", migraine headaches, and experience a profound exhaustion that feels like I haven't slept in weeks. I can go from feeling good to feeling really bad in just a matter of a half hour or so. So yeah, I look pretty good, and yeah, I feel pretty good at the moment, but when you turn around I'm going to sneak off to bed for another nap so I can continue to look and feel good - and not fall apart.......