Arthritis Mom

Since the early days of my diagnosis I have been aware of the need for an odd balance: staying active but not over doing it. Being sedentary is a problem for rheumatoid arthritis patients - stiffness is worst in the mornings after we've been mostly inactive all night long, stiffness improves when you wake up and start moving around. Being active during the day helps but anyone with rheumatoid arthritis knows what happens when you are too active. Doing too much can lead to more pain, a day or two of worsened symptoms or an all out flare. So it's important to stay active, exercise daily and avoid all day shopping excursions.

Being busy is also a good motivator. I once asked my mom how she made it all those years with untreated RA and she thought it's because she had to get up each morning and get to work no matter what. Staying in bed, not going to work, not getting my sister and me to school, was simply not an option for her. That's how it goes - there are days you just do what you have to do because you have no choice. You might wish you had a lift to help you get out of bed, but if not you will wrangle yourself out on your own eventually. You might curse your shoes for being too tight that day, but then you shove your feet in and go.

It's also important to stay mentally active. When I have lots to do it keeps my mind off the pain. Especially when it's something you want to be doing. The other day my husband asked me if my feet hurt - I stopped and asked him what had he said? He asked again and I said "oh yes, they do." I was so focused on what I was doing that I wasn't even aware I was limping around.

There is no doubt all of us have busy days that are made harder by rheumatoid arthritis. But it might help to realize that having those busy days can be a blessing too.

I have been dealing with rheumatoid arthritis since 2002 (diagnosed in 2003) and I have always sought out online resources to learn about my disease, treatment options and the experience of other people with RA. I am always surprised when I read about individuals treating rheumatoid arthritis without medication. I realize that some may have mild rheumatoid arthritis that can be effectively handled with diet and exercise, and I think that is awesome. I admit I should do a better job understanding the connection between diet and RA flares. I know I feel better when I exercise regularly. And I totally understand the desire to avoid medications. Who would want to have a daily regimen of pills and pill bottles if they could avoid it?

There are some RA patients for whom the medications are simply not effective. For those who can be treated effectively with medication, there is one very important and undeniable reason to take that path - to avoid long-term joint damage. My mom had rheumatoid arthritis before there were effective treatments. She had aspirin at high doses and prednisone, both of which have serious side effects and did not control her RA symptoms effectively. She tried a series of other treatments that varied from having no affect, to allergic reactions. After several years of struggling daily to function as a single working mother with untreated RA, she was prescribed methotrexate. It was a significant improvement over aspirin. As soon as Enbrel became available her rheumatologist prescribed that and for her just like many others, it was a miracle drug. The closest thing an RA patient can have to a cure. Unfortunately the joint damage was already severe. Severe joint damage is extremely painful, an added layer of pain and difficulty on top of rheumatoid arthritis.

Since we first speculated I had rheumatoid arthritis, my goal was to get on one of the biologic drugs like Enbrel. I knew from my mom's experience that the biologics gave me the best chance of leading a normal life with rheumatoid arthritis. I knew after watching her struggle in pain for so many years, and seeing her hands and feet become disfigured, that I wanted to do everything possible to avoid that outcome.

A normal life to me was good daily function (being able to do my regular activities) and prevention of joint damage. It took a while to get there. Since there is no test to determine if you have rheumatoid arthritis, it took 9 months to get an official diagnosis. Once I was diagnosed, I had to wait for the disease to progress to the point it could not be controlled with methotrexate alone before my insurance company would pay for one of the biologic drugs. When I reached that point, my rheumatologist and I agreed to start me on Humira.

In the past when an RA patient started on a biologic drug they stopped taking methotrexate, but the more common treatment option now is to stay on both methotrexate and one of the biologics. There have been studies to show the combination gives you the best chance at preventing joint damage. The study results were surprising because doctors and patients assumed if you were not experiencing pain and swelling then your joints were fine. It turns out that is not true. You can be functioning fine on a daily basis and still be experiencing joint damage.

Regardless of what treatment option you take, even if you are not on any medications, is vital that an RA patient be monitored for joint damage. My rheumatologist does this through periodic x-rays of my hands and feet. If you have RA and you are not being monitored for this, ask your rheumatologist or find a new rheumatologist! Do not wait until it's too late, preventing joint damage is too important. You don't get a second chance to do it over.

The babies are 1 year old! It's been an amazing year of stress, anxiety, sleepless nights, joy, excitement and blessing. The babies have grown from these tiny little 3 lb. miracles to healthy, happy, mobile and talkative little people. I knew going in that the first year with twins was tough, I was ready for that challenge. I did not know how hard it would be to be a mom of infants with rheumatoid arthritis. But I did it, I am that mom and I am surviving every day and very grateful for all that I do have.

I really want to sit down and reflect on the past year more but I can't seem to find any time. We haven't actually celebrated their birthday although it was two days ago - because we can't find any time the 8 of us are home at the same time longer than a few minutes. We think Saturday looks promising. Some days I am so busy I have to spend the babies morning nap time psyching myself up for what lies ahead. Yesterday was probably the worst it's ever been.

I knew it was going to be a big day. My husband was out of town for the entire day, a trip he tried to get out of but could not. I had errands that could not be put off, my daugther had a ballet rehearsal, my oldest stepson had 8th grade graduation and I had no help. Both my feet hurt, the fingers of my left hand, and my jaw which is the most annoying joint to swell up since it effects eating.

We were all up at 7am, the babies had their first bottle, ate breakfast, I put them down for the first nap and got my daughter off to school. After the babies woke from their morning nap around 11am, we ate an early lunch and headed to the car. We had to run by the post office to mail a camp registration, then to the pediatrician to drop off a health form to be filled out, then to the ballet store to get slippers, and to the grocery store. This was my first experience shopping with twins with no help - and I know I'm lucky to make it a year and say that (many thanks to online grocery shopping and a husband that often works from home). When we got home a little after 2pm and they were ready for another bottle and another nap. Once they were down I had exactly 1 hour to myself. I must tell you first that I do not cook, nearly ever. In that 1 hour and solely driven by 2nd graders desire to have a normally mommy - I whipped up 30 cupcakes. At the end of that hour I went in the babies room, grabbed one, put him in the car, ran back, grabbed the other one, into the car she went, ran back in grabbed the last batch of cupcakes out of the oven, covered them with foil, turned off the oven, ran out the car and sped down the driveway.

3 minutes later we were at the school. I had prearranged to have the school secretary walk my daughter outside so I did not have to get the babies out of the car. My daughter hopped in and 10 minutes later we were at ballet rehearsal. Stroller, babies, diaper bag, ballet bag, dinner/snack bag and off we went. Leotard, tights, slippers, braids, stage makeup and walk her back and get her settled. Stroller, babies, diaper bag and back in the car. Another hour successfully timed and completed. Special note: ballet tights should have a warning: "May be hazardous to mom's with arthritis." Drive home, babies dinner, bottle, diapers, down for last nap, throw in a load of clothes, time for my shower, get dressed, hair, makeup, change babies clothes and back in the car. 2 hours successfully timed and completed. Head to rehearsal location, pick up mini ballerina, change her clothes, wash off her makeup and off to 8th grade graduation for oldest stepson. At the graduation babies acting wonderfully despite being past their bedtime - last 2 hours survived. Home at 9pm.

We got in and my daughter helped me get the babies changed and into bed. They were exhausted and went right to sleep. It was then that I found out not everyone in 2nd grade likes chocolate cupcakes. It's one of those moments where you say to yourself, why did I not think of this myself? Is it worse to be a mom who never makes cupcakes, or one who makes cupcakes 1/2 the kids won't eat? You want to put your foot down and say "I made these cupcakes and those kids are darned well going to eat them!" But it doesn't really work that way, and the point is to make it be a special day for my daughter so I moped to the cabinet and pulled out a box of yellow cake. Her face went from sad to relieved to happy. We baked more cupcakes and decorated the chocolate ones. It was very late when she finally went to bed, even later for me but we had fun and it was a really cool ending to a very long, exhausting day. I'm glad I had the extra box.

I suppose I am doing better than just surviving. As hard as yesterday was mentally and physically, I think it turned out to be a pretty great day. I don't need to repeat it all today though!