Arthritis Mom

Last week I was in class and we were discussing medical illnesses and the affect stress can have in developing the illness and on treatment of the illness.

Not being shy, I offered up that I had an immune disorder and the effect I felt stress had on my disease. I like to tell myself I'll keep these details private but I am a very open person, so it often comes out. Even when sitting in a room of 25 people I don't know.

At the break two people approached me to tell me about their experiences, one with rheumatoid arthritis and one with another immune disorder.

My invisible illness was visible that day, because I made it be visible. Sometimes speaking up is the best way to find out you are not alone. And it has the added benefit of helping others around you to feel less alone too.

It appeared the babies were learning to be helpful. They have figured out how to get the wipes out of the wipe dispenser and knowing I am the one who uses the wipes, yesterday my little girl decided she could hand the wipes to me while I was changing the her brother's diaper. That was nice. It lasted one day.

Today might have been a better look into the future. One baby pulled out a bunch of wipes in rapid succession and made a break for it. The other baby, noticing that I was distracted, saw an opportunity to escape diaperless. The first baby swung back around to confiscate the unattended dirty diaper.

There was a moment there when I was unsure of my ability to get the situation back under control. I saw myself giving both of them baths and having to clean the carpet before we had even eaten breakfast. I wanted to go back to bed. I managed, but it was close. Too close.

I see it, it's just around the corner. They are going to double team me and this RA mom is going to need to be very creative to survive.

I feel that I have turned a corner that I am now having about as many good days as bad days, but even so it is always there.

I was wondering if I've ever gone a full day without thinking about my rheumatoid arthritis. I may have, especially before I went off my medications and got pregnant. The medications used to work really well and I had days that I felt totally normal. Of course, there have been lots of ups and downs in the 2 years since then.

It seems whatever RA throws at me becomes the new normal. When I did well on medications and had no other major challenges, that was normal. When I was off my medications and doing miserably that became normal. Now that I have a few good days, a few bad days, then a few good days, now this is getting to be normal. Even the inability to go a full day without thinking about it, that is normal now too.

This morning I woke up and immediately had the image of being on a roller coaster. I was at that point where even though you love roller coasters, you are screaming "noooooooo" and wishing you had not gotten on the ride that day.

I never really know how it's going to go. If I have a few great days and then a not-so-great day, will the following day be better or will I head toward an RA flare? It's a little like riding that roller coaster blind, not sure where the drop-offs are or when it is going to end. That's the most thrilling way to ride the roller coaster, but the scariest too. I'd bet most people want to know what's coming next.

When I woke up today, in addition to my foot that was hurting yesterday, I also had pain in one knee and in my elbows and hands. Once I was up and moving all my joints did start to feel better. The fatigue was probably the worst part of the day. Now at the end of the day nothing is hurting too much and the fatigue is mostly gone too. Time to go to sleep and see what tomorrow morning brings.

I remember when I was younger my mom had our whole house carpeted. We had great hard wood floors but they were cold in the winter, and they hurt my mom's feet to walk on because of her RA. I missed the hard wood but carpet is nice too.

But even with RA, I prefer hard wood floors. I have had hard wood in every place I have lived in the last 10 years. Unfortunately for me, I'm having one of those days where a joint on or near the bottom of my right foot is painful. If my mom said I told you so, she'd be right, it is harder to walk on hard wood floors when your feet hurt! Note: my mom has never actually said "I told you so."

I'm not giving up my hard wood floors just yet. I might use the slippers my mom left here on a visit a few years ago. They are very soft, in fact so comfortable that they often walk away while on my stepson's feet. I suppose I will need to reclaim them this morning.

I felt really good today. No significant pain or stiffness earlier in the day and only a little bit tonight because I'm tired. We had a huge storm this morning so that's surprising, I guess my RA doesn't predict the weather so well after all.

The day started with my little girl growing up. She has been trying to feed her food to me when she is done eating. She previously threw her extra food in her brother's high chair so this is an improvement. She offered me a piece of banana this morning, and then said "mo?" which means "more?" I'm always encouraging them to ask "more?" because their preference is to scream at the top of their lungs when they want more food. So I took another piece of banana from her little banana-covered hand and when I did, my little girl clapped for me! She was so proud of her mommy learning something new!

The day ended with my little guy growing up too. He took his first steps. Three unsteady, uncertain steps all on his own before he collapsed giggling in my lap.

It was a great day.

I have another rheumatology appointment coming up in a few weeks. I can tell my RA isn't doing well enough to start weaning off prednisone. I don't like being on prednisone and it takes such a long time to get off of it, and I can't even start yet. It's depressing.

Most of the time I try not to think about it when I take my medications. I much prefer being on methotrexate and Humira without the prednisone, not only because the worst side effects I have experienced are from prednisone, but also because prednisone is daily and the others are weekly and biweekly. It's easier to forget about the medications when the only thing I take daily are extra folic acid and calcium.

Today I had to think about it. I looked into that bottle full of little white pills and paused. Such an unwanted partner in making me functional every day. Can't be happy with them, can't throw them down the drain. That's prednisone.

I have not been back to work since the twins were born and I guess I'd forgotten. I'd forgotten what it's like to be around people who don't know about the rheumatoid arthritis.

I was sitting in class tonight and feeling fine. At the break I stood up and realized my knees had stiffened up. As I made my way to the restroom the old thoughts ran through my head. Are my knees going to loosen up after walking a bit? Is it noticeable? Can I walk a little more normally even though it hurts? No. Is someone going to ask me if I have a sprain? If they ask what am I going to say?

I often decide what to say at the last minute. On one hand I don't know the other students, and it's none of their business. On the other hand I'm going to be in class with them for several months and some of them I'll see in future classes, and it's better to be open and honest if asked directly. I can go either way.

Luckily for me by the time I returned to the classroom the stiffness had worked itself out. During the rest of the class I adjusted positions several times and stretched my legs under the table every so often. My knees felt pretty good at the end of class. Now I am at home with my feet up and all those old questions have been put off for another day.

I had a good four days last week where I remembered to exercise each morning. When the twins first wake up they have a bottle and after that are usually ready to play for a while before breakfast. During that playtime I can work in about 15 minutes of exercise. But on the fifth day I forgot to exercise and I felt noticeably worse. I was more tired and achy. Then I forgot to do it the next day, and the next. My on track is officially off track.

I have no doubt that exercise will improve my RA symptoms and that the morning is the right time to do it. Unfortunately the kids are back in school now and that only adds to the list of morning activities to fit in. So it's back to the drawing board.