Oh yes I can!

It's not even that hard. Well your hands start to hurt after a while from holding on - but it's not any harder than a day changing diapers for wriggling 1 year old twins.

This is the kind of thing that I want my daughter to think of when she looks at me. I'm not just a mom who has rheumatoid arthritis. I'm a mom who does things in spite of the arthritis. I'm a fun, adventurous mom (especially when I'm not stressed out and have managed to relax and enjoy something like a vacation).

If she can look at me on the bad days when I can't do as much and remember days like today - then she might grow up feeling that she can do anything no matter what challenges she faces. This is what I learned growing up watching my mom struggle with rheumatoid arthritis. I pray my children do not have any diseases to deal with, but I do know they will all have challenges of some sort. I want them to face those challenges head on and succeed no matter what they are.

Plus it was fun. I went a few times on the tube - with my 11 year old stepson, with my daughter, by myself and then with my stepson again. The outing was short and planned to end around the same time that the twins woke up from their nap (my father-in-law and oldest stepson stayed with the babies). The last run ended with my 11 year old stepson and I in the water - it happened fast and I'm not sure if we let go or flipped out (probably both). There were no injuries. I do have limits though; I am not going on the water skis. I leave that to the younger less chronically challenged family members.

The Weather and Me

I was so certain earlier today that my aching joints were the result of taking my medication a few hours late. It made perfect sense, I had forgotten to take it at my usual time, I did remember when my feet started hurting. This afternoon as I watched my oldest stepson make a second attempt at water skiing we heard a loud bang of thunder. A huge storm was rolling in, the kind where the afternoon sky quickly turns dark and you have to turn all the lights on inside.

It leaves me wondering if I should be predicting the weather. Does having arthritis give the people who do predict the weather an advantage? Are they aware of the direct link between storms and my hands and feet? Should I issue a press release? I can see the headlines now, "RA Mom is Amazing Resource in Weather Prediction." Because you know, it really is amazing.

It's a vacation!

It's taken me several days to settle in but I think I have managed it. Sometimes realizing what you need to do is a lot easier than actually doing it. After a couple days of getting everything unpacked, groceries bought, all the baby supplies set up and trying my best to keep our routine in place I realized I was still not relaxed and I was starting to make the vacation less fun for everyone else. Having a routine makes life with twins more manageable but now I have developed a resistance to change, which is funny because my mom is always surprised at how easily I adopt change in my life.

I think the only major change that has really given me difficulty was developing rheumatoid arthritis. Other changes like having children, buying and selling my home, divorce, dating as a single parent, remarriage, becoming a stepmom, having preemie twins.... are all things I took in stride without much resistance. Now I am struggling with minor changes to my daily routine! I have to take a page out of the book on accepting that I had RA and use some of the lessons I learned then.

So yesterday I woke up and decided I had to improve my attitude. I made a good effort and it was a much better day. We took the babies swimming in the lake with the other kids and they had a great time. I managed to get connected to the internet - woohoo! The rest of my day included the usual diapers, bottles, naptime and playtime while my husband took the older kids fishing and tubing on the boat. Overall it was a great day because I was relaxed and not letting myself feel stressed over every little thing.

My arthritis was doing great too until today. I was feeling extra tired around lunchtime today and noticed my feet were hurting. When that happens I start to think what changed? Did I do too much yesterday? Is the weather changing? Did I not get enough sleep last night? OH! I know! I didn't take my medication this morning. That will certainly do it.

I feel so dumb when I forget my medication. It causes unnecessary pain and seems so, unnecessary. I managed to relax but I don't get to take a vacation from the rheumatoid arthritis and I most certainly can't take a medication vacation! Although a medication vacation sounds nice, that would be like having no vacation at all. So now I am on track, I think. I am settled in. I am relaxed. I am medicated. Time to go see what's next. I'm sure it's not anything on my computer.

I am not in control here

It's easy to think I'm in control. I have routines and schedules and I know what needs to be done. Sometimes I am the one doing it and sometimes I am the one ensuring everyone else helps do it. But I was reminded today that I am really not in control at all.

We are about to go on vacation and I have an appointment with my rheumatologist when I return. It's time for my periodic blood test and I had a few other errands to run in preparation for our trip. So late this morning I set out with the twins and my three stepsons to get everything done. The last time I got my blood drawn I was in and out in about 15 minutes. I was hoping for a similar experience - ha ha that was the first wake up call. Of course that wouldn't happen two times in a row! We sat and waited and waited and waited - the twins getting tired and cranky, the older kids getting hungry and cranky. The repeated questions of "how much longer Jennie?" were repeatedly met with "I really don't know." What I did know was this was going to throw off the rest of our plans for the afternoon.

Finally I was called back for the blood draw. I've done this countless time, I know the routine, it's quick - a little pinch and you are done. The phlebotomist said to stretch out my arm straight and guess what - I couldn't do it! My elbows both hurt that morning and must have been swollen. She asked me again and I just had to laugh. I give up, I'm not in control. I looked at my arms and tried to stretch them straighter and laughed even harder. I told her that my arms were as straight as they could go. She said okay and she managed, and we were all on our way.

This was my reminder in getting ready for this vacation and trying to manage all the details while we are gone - let it go! I am not in control here. I am merely a passenger so it's time to just sit back and make the most out of the ride.

Surviving on the Road

Going on vacation is fun, a time to relax and get away from it all. I love vacation and I've always been a "go with the flow" and "let's hit the road anytime" kind of girl. We are getting ready to go on vacation this week and I think it's coming too fast. I'm not ready! I need more time!

There is so much to do and I'm not mentally prepared to do any of it. I don't think I'm mentally prepared for the vacation at all. This will be our third trip as a family since the twins were born but our very first going somewhere that does not have a washing machine. How can I possibly keep a family of 8 running for a week without the ability to wash clothes? Should I be planning to wash them in the lake and hang them up to dry? Hmmm, maybe that would work.

I have to do my Humira injection while on vacation. I don't know why this discombobulates me so. It's not that hard, throw the box in a lunch cooler with a cold pack, put it in the fridge when we get there. If it's possible to have obsessive-compulsiveness related to one activity - this would be it for me. I obsess over whether the cold pack is cold enough, or two cold, check a hundred times if I really did remember to put the prescription in there. When we get there is the fridge cold enough, did anyone accidentally throw the box out not knowing what it was.....

Beyond that, I have a boatload of laundry to do before we go. My luggage ripped on my way back from Oklahoma so I need to find time to go buy a new luggage bag, we found an infant life vest but they only had one left so we have to go find another one somewhere, and I need to get a blood test before we go (the fun of being on methotrexate).

I've been doing a lot better lately, fewer flares and less morning stiffness. But this vacation is about fun and activity, and I'm not sure I'm up to the task. The idea of keeping two suddenly very mobile babies away from water danger frightens me. I know there are lots of helping hands on this trip but somehow I'm taking all this worry, fear, planning, obligation, responsibility on myself. And it's making the vacation not sound like much fun.

My final depressing observation is that I always looked forward to vacations because it was a break from work, the normal daily grind. But now that I'm not working, my normal daily grind is going on the trip with us! Bottles, diapers, cleaning, and oh my gosh, I am a nut about vacuuming since the babies are crawling around on the floor now - do I need to take my vacuum on vacation with us?

My normal optimistic view seems to have flown right out the window. Deep breath. It will probably all be fine once we get there. I need to find a few positives. The trip will be fun, the kids will have a blast, they will wear dirty clothes and not care or I'll find a way to wash them, I might be able to convince my husband to pack the vacuum and that I can't bait my own hook due to having rheumatoid arthritis.....

The Fear

We all have fears. I have had a few new one's since developing rheumatoid arthritis. I have a recurring fear is that I will be alone and unable to open my child proof medicine bottles. I have feared driving up to a gas pump alone not knowing if my swollen fingers would be able to grip and turn the gas cap. I have dreaded taking a shower during a particularly bad flare, wondering how it would turn out because I could barely hold the shampoo bottle much less squeeze the shampoo out of it.

None of these fears has ever kept me from accomplish my goal. I have struggled for several minutes and cursed those darned medicine bottles, but if nobody is around to help I always win the battle eventually. For things we cannot do, there are other options. My mom puts shampoo in small bottles that are easy to hold and don't require squeezing. I have used my chin and shoulder to squeeze the shampoo out. You can use a combination lock box to safely store medication so you can avoid those arthritis-proof, I mean child-proof caps. If I really was stuck not being able to get the gas cap off, there would probably be someone nearby I could ask for help. Where there is a will, there is a way.

Unfortunately the fear is more than that. I fear the pain I will experience getting that gas cap off, and I fear the embarrassment of having to ask someone else to do it for me. I want to be self sufficient and I don't want it to hurt. I hate knowing both are a regular part of my life. Those fears are a little harder to conquer.

There are times that all these fears rushing around in my head even during a simple task like trying to open a medicine bottle. Logically I can see that I have a choice. I can struggle to accomplish a task and feel the reward of independence, or I can ask for help and avoid the pain. Sometimes I can't decide and I struggle with something too long. My husband will notice I am frustrated and will see an easy solution - let him do it. If my issue that day is needing to do it myself, that solution won't work for me I am sure that is hard for him to accept. He doesn't want to see me struggle in pain, so now he feels frustrated.

It's like the game of tic-tac-toe. There is no way to win this.

I read a book a few years ago, "Chasing Daylight." It written by Gene O'Kelly, a man with a terminal brain tumor and who was given three months to live. He talked about making the most of the time you have, and about creating perfect moments in your life. A perfect moment doesn't have to be spectacular, it's just a special moment you want to hold in your heart and remember forever. It can be planned or spontaneous. A perfect moment could last an hour, or last just a few minutes. It could be as simple as taking a walk with your husband or doing something that makes your child laugh hysterically or watching the perfect little butterfly land right in front of you. The trick is to realize they are happening and enjoy them as much as possible.

I've had a few perfect moments this week. Those moments are so much more important in my mind than the frustrating moments where fear is driving my actions. So I think this is the solution to all those fears. This is the way to feel like I win. Let the frustrating moments come and go, but hold onto all the perfect moments.

Your Rheumatologist and the Internet

If you have or suspect you may have rheumatoid arthritis, you need to find a rheumatologist. A rheumatologist treats diseases of the joints, muscles and bones like rheumatoid arthritis, fibromyalgia, osteoporosis and many others. Using a specialist for rheumatoid arthritis is important because they have the most training and experience when it comes to these types of diseases, they are most likely to be aware of the newest treatments and what know what to try if the more common treatments are ineffective.

Once you find one, you can make great use out of internet resources to help you evaluate and communicate with your rheumatologist.

When I first suspected I had rheumatoid arthritis, I tried to learn as much as I could about it. I did this through websites dedicated to arthritis and messageboards for people with arthritis. I learned about symptoms (common and rare) and treatments (most effective, less effective) and what to expect from a visit with a rheumatologist.

With this information I was able to determine that my rheumatologist was very up to date on all the latest recommended treatments that I had read about. Whenever I received new information from my rheumatologist I went home and did my own research to determine if I agreed with his advice (with the exception of breastfeeding while taking Humira, I always have agreed with him). Having the right rheumatologist can make a big difference in getting your RA under control, so this was very important to me.

The benefits are mutual. There are times when my rheumatologist will give me a quiz to see if I already know what he's about to tell me. The day he was going to show me how to inject Humira, he asked if I knew how to do the injection. I did. I had already read the injection instructions on the Humira website. What can I say, I was curious, and my rheumatologist was not surprised. It made the process easier for him because we weren't starting from scratch, and more comfortable for me because I knew a little about what to expect.

I think this is one of the best uses of internet health information. It doesn't make you able to diagnose and treat yourself (not recommended), but it can make you an informed patient and it can help you determine if the rheumatologist you've chosen is the right one for you.

Busy

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.

Why medicate?

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.

I survived!

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!

Deep breath!

I'm mentally preparing for this evenings activities. I'm lucky that my husband does not often travel on Thursday's, when he has to and especially during little league season, it's crazy! I have already gotten one child successfully off to school, fed the babies twice (4 bottles plus table food), changed 5 diapers, started laundry and showered. So I am off to a good start. If the swelling goes down in my foot I will be ready, if not I might be doing this all in slippers. Below is what the evening will look like. Can you imagine if I had to hold down a job too?

3:30pm Stepsons arrive home (my daughter is going to a friends house after school and will get a ride to baseball game later)

4:30-4:45pm Load up car with everything everyone needs including sports equipment, musical instrument, music bag, school bags, diaper bag and bag of toys and blankets, plus two babies

5:00pm Drop 11 yo at tutor

5:15pm Drop uniform and equipment at 7 yo's friends house where she is playing, thank friends mom for taking her to baseball game

5:30pm Pick up dinner on the run

5:45pm Drop 14 yo off with music instructor for ride to band rehearsal

6:00pm Pick 11 yo up from tutor

6:10pm Drop 11 yo off for baseball practice that started 10 minutes before

6:15pm Arrive at 7 yo baseball game that started 15 minutes before, watch game, feed babies, change diapers, play with babies

7:30pm Game ends, pack up babies, blanket, toys, etc.

7:45pm Arrive at 11 yo baseball practice

8:15pm Pray practice is almost over

8:30pm Arrive home

8:30-9:30pm Make sure homework gets finished, instruments are practiced, bathe babies and put them to bed, clean up, do laundry, send older kids to bed

9:30pm Collapse

Help me out!

I was searching around for information on the age people typically get rheuamtoid arthritis for this blog post, and I found this which I did not know: "RA develops more often than expected the year after giving birth."

Well that certainly explains a lot! I knew that 75% of women with rheumatoid arthritis go into remission during pregnancy and that it typically comes back like a train wreck a few weeks or months post-partum. My rheumatoid arthritis did not go into remission although I had a fairly easy first trimester and I did get a break for a few weeks after the births. I did not know the train would keep popping and running me over for a year or so.

I take some comfort in knowing this is common. It means I'm not the only one, and that always feels good (sorry for those of you who have to suffer along with me). And because it says "in the first year after birth" it means that at some point in the not too distant future I can go back to my normal RA life health where the drugs do their job.

What I was going to post about, before I found that tidbit above, was a request. I am throwing this out there to anyone who wants to take up this cause. As the population ages there are more and more gadgets on the market that help with daily living when you have difficulty gripping, doing housework, preparing meals, etc. You know, all those Good Grips products. Because rheumatoid arthritis can hit women of childbearing age, I think we need a line of arthritis mom friendly products. Here's my initial list.

Arthritis Mom Wish List

Diaper changing machine or at least something to keep the babies from kicking me in the wrist and wrangling away while I change their diapers. It ends up looking like I'm on the losing side of a wrestling match. If I can't have a machine, then something to keep them from flipping over and trying to get away. And perhaps something to keep one baby from rolling over and smacking the other baby or from putting a foot in the other one's dirty diaper. If not that, then at least something to squeeze the diaper cream for me, perhaps something that would also work on my shampoo bottle.

Automatic snapper for those tiny snaps on baby clothes. Until this one is invented I've started snapping every other snap on bad RA days.

Robot arm to lift babies out of the crib on bad RA days. Some people worry about their kids learning to crawl out of the cribs themselves, this arthritis mom is look forward to that day.

Infant car seat release to help me remove the seats from the base without having to simultaneously squeeze hard, pull and lift over 20 lbs in an awkward position. I need something that fits in my pocket or is attached to the seat. Right now my coping mechanisms are called Husband and Stepsons but it's hard to take them everywhere I need to go.

Adjustable shoes. I know they exist. But I'm 37 years old, I need attractive shoes. I don't want shoes that look like my grandma's slippers, and I'd like buy them without having to take out a loan first. An area they specifically need to expand is the bottom - what is up with the inside/bottom of the foot swelling anyway, it's incredibly bothersome.

Most importantly, I really need medicine bottles that the kids can't open but that I can.

Love/hate relationship

At my rheumatologist appointment several months ago I was happy to report I was back on methotrexate and I was ready to start weaning off prednisone. I was down to taking 5 mg daily at that point and was told I could drop to 4 mg daily. I know it takes a while, the only other time I've weaned off prednisone the entire process took 9 months. I was prepared for the long haul. With osteopenia caused from my first lengthy use of prednisone, I was ready to be on my way.

I had been faithfully taking my 4 mgs along with my other daily, weekly and biweekly doses of RA medicines when my recent flare hit. It took a break for my trip last weekend but showed up in full force the day of my regularly scheduled rheumatologist appointment a few days ago (that was nice, usually Murphy's Law dictates symptoms disappear right before the doctor appointment). I figured I was in for a cortisone shot and I was right. Woohoo! They sting but they sure are effective!

Unfortunately the other recommendation was to take 10 mgs of prednisone for one week to knock the socks of this flare, then go back to 5 mgs daily. Ugh. One step forward and two steps back, not exactly how the saying is supposed to go. I keep reminding myself this is short-term, rid yourself of the flare and then worry about prednisone intake.

It's such a love/hate relationship with the medications. I used to be one of those people who never took medications. If I had a headache, I would lie down and rest, drink water and wait for it to go away. If I had a cold, I stayed hydrated and ate well and let it pass. In hindsight, I'd say I was proud of my immune system and trusted it to work properly.

Not any more. Today I wake up every day and take motrin, prednisone, calcium to combat side effects of prednisone and a prescription strength folic acid tablet to combat side effects of methotrexate. During the day I take more Motrin and calcium. Once a week I take methotrexate and biweekly I inject Humira. There are advantages. Last Saturday I was able to impress the younger children by holding 11 tablets in my hand (6 methotrexate, 2 prednisone, 2 motrin and 1 calcium) and swallowing them in one gulp.

I know I'm lucky. The drugs work for me. They let me be myself and face the world and care for my children. I know what it means to not have that, I watched my mom struggle for years taking asprin and a serious of horribly ineffective and sometimes damaging treatments before more effective treatments were available. But I still hate that I have to take all these medications. I love them for what they do, and I hate that I need them.

We made it!

We are finally home! The trip was good, my RA flare finally took that hike and just in time. I had my normal aches and pains but noting that knocked me off my feet. My stepson was an awesome help. We were at the airport 10 minutes when he turned to me, holding a bag, two pack n' plays and pulling another bag on wheels while I pushed the twins in the stroller with the diaper bag and a second bag, and asked me "How exactly were you planning to do this by yourself????" I told him I had no idea but it was obviously a crazy idea and I'm glad that his father had the good sense to realize that.

The babies did fairly well on the plane rides. It was really hard to land and take off two times each way, and changing plans in the middle was no easy task either. My general policy was that my stepson got to pick whichever baby seemed the happiest to sit with him, and a couple times we switched off when the baby he had got too cranky. There was only one of the four flights that we ended up one row apart from each other, so most of the time he was on his own dealing with toys and bottles. If we were keeping score I'd give him an A+.

I often get comments on the twins are or people ask questions like "are they really twins?" but it was interesting in the airport we didn't get much of that - I think most passengers were anxiously looking at the two babies and thinking to themselves "please don't let them be on my flight!" My stepson is over 6'1" so many times he was mistaken for being a new father. One flight attendant kept referring to him as "daddy" although he did his best to correct people along the way. One seat mate asked his age and commented "wow, you are really starting young!" and it took him a few minutes to realize what he meant before he said "wait, no, this is my little brother!"

My stepson got to see a little of small town Oklahoma life - he found a bike and went bike riding, he found some fishing supplies, made some of his own and caught a few fish - one was a 14" catfish! He went horseback riding, met some local rednecks and we showed him what a "double-wide" was.

It was happy and sad to see my grandmother. She's 93 years old and not doing too well. She did not recognize or understand who my sister and I were but she did notice we brought two babies and she loved seeing them. She tickled their feet and talked to them and went on and on about babies - I am glad she got to see them even if she doesn't know who they are. It's interesting and difficult to see the similarities between infancy and the end of life. They both need help for even the simplist self care tasks, their daily activities are dependant on what everyone around them is doing or planning, they have difficulty communicating, most of their communication is through yelling, crying, smiling or laughing. I was glad to see my grandmother mostly laughing even if I was not sure what she was laughing about.

I would have liked to see her more, if only we lived closer. But it felt great to get home last night - I love my home and my family. Having a chronic illness has made me appreciate life a little more (especially the good days) and given how long some of my grandparents have lived, and the fact people in general are living longer these days, it looks like I have a lot of living left to do.

The end is not in sight

I wonder if rheumatoid arthritis has infected my brain. When the pain gets really bad and I get so angry and frustrated, I become an instant jerk to my caring, loving, husband. I think it's because he's there, he's in the path and gets run over.

The truth is I know that he will move mountains for me if only I tell him what I need. The most frustrating part is that he can't give me what I really want, which is RA to take a hike. This is incredibly frustrating for him too because as much as he would do it, mountains cannot be moved by people and it seems my RA won't be taking a hike any time soon. Deep breath.

I have a trip coming up this weekend, I am flying to see my 93 year old grandma and my sister is meeting me there. I decided to take the twins and my husband will stay here shuffling the younger boys to music lessons and baseball games all weekend, my other daughter will be with her dad.

Since this flare is going on three weeks of ups and downs, my husband started to doubt the wisdom of going on this trip with no help. He suggested I take my oldest stepson with me, he's 14 years old, over 6'1" tall and an incredible help with the babies. I told him I had it all worked out in my head how I would manage with just me and the twins - he knows I'm an optimist and sometimes incredibly stubborn about accomplishing something even if I'm in pain. But it's was really hard to argue I should go alone when I could barely walk. So my stepson is happily taking a couple days off school to go with us.

Connecting flights that require us to switch planes, a several hour drive from the airport, all that travelling there and back in 4 days..... it should be an interesting adventure. Wish us luck!

Where did that come from?

I woke up Monday morning in a huge amount of pain. My mind quickly flashed to Saturday and helping to rearrange the kids' room - I must have over done it. I got the babies fed and back to bed, made sure my older daughter was dressed and ready for school, and went outside to take her to the bus stop. It was raining and of course my first thought was on top of feeling miserable I'm going to have a bad hair day!

Oh, it's raining.

Why is it that when it rains and I have a flare it takes me so long to make the connection? Even after 5 years of having rheumatoid arthritis, I still have trouble making the connection between pain and weather. Over doing it and rain, double whammy.

Around noon I thought I should be feeling better than I was. The morning stiffness and pain was not subsiding. It occurred to me this was not a small flare. I don't often have big flares while on medication. I must have really over done it. Everything hurt and with 10 month old babies to care for there are no breaks. I wanted to curse every snap on their cute little outfits. Pulling the tabs on the diapers was painful. Lifting them was painful. Making the bottles was painful. Everything I did was painful.

Being in pain has a way of putting you in a sour mood. You can't really go around the house screaming "why me?" but the thought was in my head, and the expression was on my face. My poor husband wasn't sure what to do with me. I know I send mixed signals because I don't want to be babied and to ask for him to do everything for me, I have a need to be self sufficient. At the same time I can't do anything without it hurting and I needed help to make it through the day. I spent most of the day being mad at myself and at RA and unfortunately my husband had to experience that right along with me.

Day 2 was worse. I hate not knowing when the flare will end. I hate that the world wasn't stopping so I could take it easy until I bounced back. I kept thinking if at least it was summer the the babies could stay in diapers and I could avoid those evil snaps.

I know from experience that if I can go with the flow and accept what is happening it's easier to cope but every now and then that is just too much to ask of myself. I wanted to be mad and I didn't want to accept this latest slap-in-the-face reminder of my limitations.

On day 3 I started to think this would go on all week. I was fed up, I'd had it. But that didn't change anything - still just as many diapers to change and bottles to make. I was just as mad about all of it. I cried, I yelled at my husband that there was nothing he could do, and I again cursed the cute clothing with all the little snaps.

The evening of day 3 was like a fever breaking, I suddenly started to feel better and my mood changed just as quickly. My husband noticed and commented on it. He seemed relieved but not quite sure if he could relax just yet even though the happy "me" was coming back. But it was subsiding, the end of the flare was here. The return to normalcy. Until the next time.....

The Torture Pen

I have to give myself a Humira injection tonight. I don't want to. I never want to. Who would? I feel like a wimp complaining but I just don't like it!

I recently exchanged my regular needle for the new pen (push a button and the needle shoots in all by itself), I was told people like it better. It is supposed to be better, easier and hurt less. Maybe I'm doing it wrong, I agree it's easier but it definitely hurts more! Is it just me? Why is this pen so popular?

I need to find a way to psych myself up for it. Maybe I could have cookies as my reward after. Kind of like when kids get a lollipop or stickers at the doctor after their immunizations. Some kind of consolation prize. If you have any suggestions, please send them along. Thanks.

Thank Heaven for Little Boys

....and the not so little one's.

It seems they went and made infant car seats a lot heavier since I had my daughter 7 years ago. I have two of them to lug around and it can be a lot even without RA. Now try to imagine two babies in heavy car seats combined with an RA flare and my unreasonable need to do everything for myself.

Recently my 11 year old stepson and I were out running some errands. That particular day my left hand was hurting, which is good for many reasons, the right hand being out of commission makes almost all tasks harder. I can get away with not using my left hand easier. However, unlatching the car seats from the bases requires a difficult squeezing motion with the left hand, while pulling up with my right forearm under the car seat handle, standing on the runner on the side of the minivan to give me the most leverage. Most days I can manage it, but on this particular day it was nearly impossible. The first couple times I did it that day I was able to get the car seats out after several attempts. We got out of the car a third time and I was trying but making no progress. My stepson looked at me and asked, "do you want me to do it?" He said it with a smile and an upbeat voice - he was glad to help. I sighed, defeated. "Yes, thank you."

I remember another time not too long after my diagnosis, I was visiting a friend and getting my sleeping child and a bunch of bags out of the car. My friend's husband asked what he could carry and I gave him one bag, loaded two others on my shoulders and went to pick up my then 4 year old daughter. He asked if he couldn't carry all the bags and I said "no, I got it." He said "yes, I see that but wouldn't it be easier if you let me help you?" He made it really hard to say no.

I have a ton of examples of my husband, my stepsons and my daughter helping me when I want to do something myself and simply can't - almost daily. Those medicine bottles I can only sometimes get open, carrying the car seats to and from the car, unloading groceries so I don't have to, running to the other room because it's painful to get up and walk there myself.... I suppose I like to pretend I can do it all myself, but I really don't do it all myself.

So maybe RA is life's way of trying to teach me that it's okay to accept help from others, and to stop fighting so hard against it....

You can do that?

Wait. You wanted to nurse twins? Yes, I wanted to nurse my twins.

I feel blessed I was able to nurse my first daughter until she was 23 months, I did not have RA then. I knew being a mom with RA that it might not be possible to nurse the twins, or I might only be able to nurse for a short time. I set about doing my research early in the pregnancy. Where there's a will there's a way, sometimes. I found mom's online who had chosen to nurse on Enbrel and Humira or by waiting to go back on any medications. I spoke with several lactation consultants and read what Dr. Hale had to say about Enbrel, Remicade and Humira. I talked to my rheumatologist and the babies' pediatrician. The ultimate answer after talking to all those experts was I had to decide for myself with very little scientific research to base my decision on.

While most people think it's probably safe to nurse while on Humira, nobody is willing to say it is definitely safe. It is not safe to nurse while taking methotrexate. One can nurse on low doses of prednisone and motrin. I took all the information I had gathered from every source and much to my rheumatologist's dismay, decided I would try to make it 6 months nursing the twins.

I stayed off the Humira as long as I could, which was about 6 weeks. I was able to stay off the methotrexate for 8 months. Eventually there were just too many bad days but I am glad I made the decision to nurse them for what ended up being 7.5 months. I am thankful having RA did not take away the opportunity for me to do something I consider so important.

I know you!

When the twins were born they were 10.5 weeks early, so they had to spend some time in the NICU. Our son was in the NICU for 6.5 weeks and our daughter was there for 9 weeks. This meant twice daily trips to the hospital most days.

All the pain relief I received during and after the deliveries to recover from surgery must have beat my RA into submission because those first few weeks were great! Hardly any pain or swelling at all. But of course the rheumatoid arthritis did begin to slowly return. I was trying to go as long as I could without taking medications to give myself more time to decide about breastfeeding while on Humira. As I gradually got worse I just paced myself more, tried to take it slow. The walk from the parking lot through the hospital and up to the NICU was long. I endured a lot of "are you okay?" questions from strangers as I plodded along.

One day the nurse manager stopped by to talk. I knew she had RA because a nurse had mentioned it, but she did not know about me. She said she saw me walking said she knew I had RA because "you were walking the way I feel." We had a nice chat.

I know others with rheumatoid arthritis have had similar experiences when they have disfigured hands. It's like rheumatoid arthritis patients belong to a not-so-secret society of limping, bent-fingered almost-cripples. Shhhhhh, don't tell. Others might get jealous....

Rheumatoid arthritis and bedrest don't mix!

I knew before I got pregnant than 75% of women who have rheumatoid arthritis go into remission during pregnancy. I was certain I would be among that 75%. Of course I would be.

I stopped taking methotrexate about 6 months before I got pregnant, and I stopped Humira as soon as I found out we were expecting. I had morning sickness but I did not have much RA pain in the first trimester. I assumed I'd be fine the rest of the pregnancy. In the beginning of the second trimester I had a few flareups, but they weren't too bad and as long as I got up and got moving I did well.

At a routine ultrasound we ended up in triage for preterm labor that I did not know I was having. Surprise! I was put on bedrest to slow the preterm labor and that is when the problems started. I could get up if I needed to and had an hour a day I could do some light walking around. I could exercise my arms and legs from a laying down position. It was not enough!

This was bad. The kind of bad where you wake up and can't move at all, frozen in whatever position you slept in. The kind of bad where you have to give yourself a pep talk to stand up. The kind of bad where you need assistance in the shower because you can't twist the water faucet, squeeze the shampoo bottle, hold the soap or get the conditioner out of your hair.

Eventually I had to ask for prednisone. It helped some. I managed because I didn't have much of a choice. No matter how much it hurts, if you have to pee you are going to find a way to get up and to the bathroom!

Bedrest ended when I went into full labor at 29.5 weeks gestation. My husband and I did not want the babies born that early but we didn't have a choice, and he said relief just washed over my face when the doctor said it was time to deliver the babies.

We had a midwife and a doctor because I wanted a midwife, and being high risk dictates a doctor be present as well. My experience birthing twins turned out to be just as much of a roller coaster as staying pregnant. As we were being wheeled into the operating room, just as a precaution, I explained how my best friend has twins and had one naturally and one via c-section. My nurse had just birthed twins herself a few months earlier, and she promised that would not happen. Ooops. She apologized later.

My little girl was born first, completely uneventful except for her small size, 2 bls 14 oz. She was perfect but very small. My little boy made several attempts to enter the world the wrong way, and finally was born via c-section 1 hour and 21 minutes after his sister, weighing 3 lbs 1 oz and very bruised. He needed some help from a ventilator for one day, but then was breathing on his own too. And we were on our road to get the babies healthy and home, while I recovered from the c-section, had a little breather, and prepared for the return of RA.

Why are you walking like that?

I call it the duck walk. It's the walk I've seen my mom do a million times. It happens when your feet hurt and don't want to bend the right way, so you try to walk without bending them and you look like a duck, walking.

My daughter was 2 years old when I started having RA symptoms. She doesn't remember anything else. But my stepsons met me as a pseudo healthy person, and were slowly introduced to RA. I went off the methotrexate in order to get pregnant, and one day we all decided to go fishing. After sitting in the car a while my legs and feet stiffened up and when we got there and got out of the car, I was doing the duck walk. My youngest stepson asked me why was I walking that way? Welcome to rheumatoid arthritis. I will be periodically walking funny and suddenly unable to do simple tasks I did just the day before. If you can find some entertainment value in the oddness of it, that is a good thing.

It's not all RA

Thankfully my life doesn't have to revolve around rheumatoid arthritis all the time. I am lucky that the medications work most of the time and as long as I am on them and I don't over do it and a weather system doesn't knock me down, I'm in good shape.

I met my current husband through match.com. We started dating and instantly knew we each had to offer what the other was looking for. Our relationship moved fast but we focused on making intentional choices and basing our decisions on what was best for us and our children. He proposed on a beautiful day on a trip to San Francisco after a short hike up a mountain overlooking the Bay and the city. Thank goodness RA wasn't active that day!

We spent the summer of 2006 preparing for a life together, selling my house, planning the move and the wedding. The wedding was in September and it was a very small affair, 25 guests - half of whom were under the age of 8. We skipped the honeymoon, with four school aged kids and it being September, we thought we'd take a trip in the spring.

Postscript: Becoming pregnant with twins tends to ruin vacation plans.

Dating with rheumatoid arthritis

Hi, my name is Jennie, I am smart, have a good career, a few hobbies and interests, a great daughter and a potentially disfiguring disease that can occassionally and without warning keep me from getting out of bed. Oh, and I take a lot of prescription medications.

That is NOT how I wrote my Match.com profile.

It's hard to know when to tell a person you meet that you have rheumatoid arthritis. If it's a co-worker you might get away with never telling them. If it's a stranger you will never see again you might not care. But when you are dating you have to decide if who to tell (probably not every first date you'll never see again) and when to tell (for those lucky guys that make the cut).

I decided it definitely was not a first date topic. Better to give the poor guy a chance to see that I appear to be healthy before I disabuse him of that notion. Plus what a terrible first date topic! It can be a second date topic, if you think it might be going somewhere by the second date. I settled on the third date or any appropriately cozy phone conversation between the second and third date.

Unless....

...they ask me to have an alcoholic beverage, and then I'm stuck between lying that I'm not in the mood for a drink or admitting that I can't drink due to the medications I take. If you brush that off then you might feel funny explaining one week later that there really a reason you don't drink. So my opinion on that is better to be honest. Of course, after you go through all the gory details you are going to want that drink.

Another dating tip is have your RA under control first. It's no fun at all to get all ready for a date and then not be able to fit your swollen fit into your cutest comfort-fit shoes.

No Soup for You!

Stress can exacerbate RA. Most people with RA know this, most people without RA know it's good to reduce your stress level. It's easier said than done.

Shortly after being diagnosed I was going through my divorce and my job was at a very stressful point. I set out each morning insisting I would not let the stress get to me. Usually by 10am I would get a phone call or an email that would raise my stress level and almost immediately my hands, fingers and my jaw would swell. I knew as soon as my jaw swelled that I would be ordering soup for lunch. It was nearly impossible to eat a sandwich when my teeth would not close together properly.

Day after day this happened. On the rare day I could keep it under control I would be so happy to not have soup for lunch.

I was determined that I was going to stop letting stress affect me this way, I was getting sick of soup! So I set about anticipating stressful situations a little better, and taking steps to reduce my stress level during the situation, not after when it was too late to avoid the pain and swelling. When I start to feel stress I stop and remind myself what is really important, remember the world does not rest on my shoulders alone, and that any situation can be handled better with a calm response than a panic response. Slowly I started to get better at it. I really could control my stress level! I perfected it by trial and error over several months. Perfected may not be the right word, it's not perfect because some situations catch me off guard, but I do have a process of mental gymnastics I go through that do a fair job of getting the stress before the stress gets me. And if I eat soup these days it's usually because I want to.