Arthritis Mom

As you may have read, we just returned from vacation. It was a fun vacation but the purpose was also to see my husband's family as they vacationed with us. Now it's my turn.

Home is in Colorado and I have not been there in 2 years. It's my longest absence. I used to go at least once, sometimes several times each year. I miss my family a lot and I love going home. The last visit was August 2006 just before I married my husband. We quickly figured out that trips home would be more difficult all 6 of us, and a lot more expensive, and agreed we'd plan a trip once a year from here on out. The 2007 trip never happened because the entire year was spent with me either pregnant, on bedrest, waiting to get the twins home from the NICU or adjusting to life with newborn twins at home. We are now taking our 2008 trip.

I'm so excited to go, but daunted by the process of getting all 8 of us out there. Thankfully we got a direct flight. We are mostly packed, very organized, and endlessly optimistic. We have a few activities planned for the older kids, they are ready. But this whole event is a rheumatoid arthritis flare waiting to happen. It will be an hour driving to the airport, 2 hours getting through the airport and keeping the babies happy while we wait to board, 4+ hours juggling the babies in flight, getting off the plane, through the airport, retrieving the luggage, and the icing on the cake, getting 8 people and an estimated 13 suitcases, duffel bags and backpacks, two car seats and one stroller on the shuttle to get the rental car and then getting all of us to my sisters house. That would be a challenge for a healthy body, much less my body.

So here we go - wish us luck. I'll post again from the other side.

My twins were born 10.5 weeks premature and what that means is they have two ages - an adjusted age and a real age. Right now their adjusted age is 11 months old but they are actually 13.5 months old. We go every three months for a developmental assessment with a team of specialists who evaluate the babies and determine if they are on track.

The last two appointments have been very stressful. They usually go like this....

I have the babies nap as long as possible in preparation for the exhausting afternoon. Despite feeling like I left my house on time, I arrive late. I remind myself how much I hate arriving late. I pull into the parking lot and are no spaces available except in the very back of the lot. Either my hands or my feet hurt, or both. I park and get the stroller out as quickly as I can, unload the babies, strap them in and go. I get inside and have to register, this takes way longer than I expect and makes me wonder why I don't leave my house earlier to allow time for this. I tell myself next time I am going to be on time.

Once registered we go to see the physical therapist. This part is the easiest because the babies aren't tired yet and they can play on the floor together. Then we move to the behavioral assessment. The babies are getting a little tired, they sit in a high chair instead of on the floor and they really want to be playing on the floor and they have to be assessed one at a time. The one not being assessed is squirmy and I'm having to constantly keep from escaping my lap (a challenge with rheumatoid arthritis even on a good day). This assessment seems to take forever. Somewhere in the middle I try to get both babies fed, then we see the pediatrician. Both babies in turn get undressed, ears checked, weighed and measured and muscle tone evaluated. By the end both are screaming, exhausted and we are all ready for a good cry and a nap.

Today was totally different because today my husband was able to go along too. I had him put it on his work calendar when I made the appointment in the hopes that nothing would come up and conflict. It didn't and what a difference! It was still an exhausting afternoon but not nearly as stressful. He fed one baby while I fed the other. He went to the hearing test with one while I sat through the behavioral assessment with the other. He got one undressed and dressed, I took care of the other. The best part, they scored right at 11 months old in almost every aspect (this is an improvement over last time when they scored below their adjusted age in several areas). When we were done we all needed a nap but nobody was crying, most importantly not me.

We finally got the Wii for the kids a couple weeks ago. Right away Wii Boxing became a big hit in our house. What's impressive about it is that as you are punching air you can feel your heart rate increasing and the next day all of us have sore arm muscles. It's no impact and it's fun - in my opinion that makes it perfect for a busy mom with rheumatoid arthritis. They make a game specifically geared toward exercising called Wii Fit and we were going to buy it but it was sold out. The game includes many different types of exercise and tracks your performance. If my husband and I can turn it into a competition that will be all the motivation we'll need to get into a better exercise routine.

I found an article on Arthritis Today online that says it's a good option although you won't burn as many calories playing Wii Tennis as you will by actually playing tennis. As a mom/stepmom of six, I'm not sure when I'd be finding time to organize a game of tennis, plus I'm not very good at tennis. The good news is that playing Wii Boxing you won't get any black eye's or bloody noses. My personal thought is that Wii Fit is at least as effective as most other forms of exercise you might do in your living room. It includes yoga, balance, strength training and aerobic exercises.

If anyone else out there has tried Wii Fit post a comment and let me know what you think. Otherwise I'm pretty sure we are going to buy it and try it out.

I read somewhere about a woman with rheumatoid arthritis who ran a marathon. I am really impressed by this, I don't know how she would do that and not ruin her feet. I remember the days before rheumatoid arthritis when I would embark on the occasional lengthy shopping excursion, nothing as challenging as a marathon. I've only done this a couple times since developing rheumatoid arthritis because it can take a few days to recover, and it really hurts my feet! A lot!

But it can be done when necessary. I have occasionally pushed myself beyond what I should because I had to - my all day shopping trip to find wedding shoes a couple years ago is one example. This week was another example.

As soon as we got home we unloaded, or should I say "exploded" our luggage, baby gear, dvd players, video game devices, books, towels, fishing and swimming gear, toys and laundry. Some things got put away, the boys went back to their mom's, my husband had to go out of town, and I had a bunch of other tasks that took priority at the beginning of the week. Monday and Tuesday were very busy and exhausting, I spent no time cleaning or organizing.

On Wednesday my daughter and I woke up to no TV and no internet. Within a few hours and amazingly only two phone calls to my husband and one to Direct TV, I was able to fix the TV issue by resetting the circuit breaker. The modem and router were fried and needed to be replaced, but I felt up to the task. I honestly thought dragging the twins to the store would be the hardest part of the process. It was not. I spent several hours Wednesday night and Thursday morning attempting to install the new modem and router, and speaking to various technical support staff at HP, Verizon and Linksys. Just for fun, I'll tell you HP wins on friendliness, Linksys wins on effort, and Verizon comes in a distant third. A company named Zoom made the modem and I didn't need to call them, so they win the grand prize.

By Thursday afternoon I had been running on empty for about 4 days. I had one late night because I couldn't sleep from my cold, a second late night because my kids couldn't sleep due to their colds, and a third very late night trying to get online. On Thursday in addition to finally getting the modem working, I got two kids to music lessons, one to an orthodontist, entertained twins in a waiting room for an hour where there were allowed to touch nothing (they did their best to destroy magazines and potted plants), made three other quick stops, bathed the twins and put them to bed and drove my daughter an hour round-trip so she could go back to her dad's house. By 7:45pm I was home and done with everything that absolutely had to be done that day.

However, I knew my husband was coming home around midnight from a long day of working and traveling, and I really like for him to come home to a semi-clean house. I wanted the house to be cleaned so I could enjoy it when he came home too. It's that moment in the race where you think you can't go on but you push yourself to keep going anyway. So I picked up the toys, did the dishes, wiped the counters, shook out the rugs, swept the floors, did some laundry, made the bed and cleaned the bathroom. I felt so much better when that was all done. My feet hurt but it was well worth it.

I may not be able to run a marathon, but there are days (or weeks) where it sure seems like I do. My favorite part? The satisfaction of crossing that finish line.

We returned from our vacation on Sunday. We had a long exhausting drive home with unhappy, stuffy nosed babies. There was not much time to recuperate - on Monday the boys went to their mom's house, my husband had to go out of town for work and I had two appointments to which I unfortunately had to drag the twins and my 8 year old daughter. It was a really long day for all of us but we plodded through and it wasn't nearly as bad as I imagined it was going to be.

I woke up today with nothing left, no energy, no motivation to do anything. Sadly, we all had to go to my rheumatologist appointment. We needed to leave the house by 10:00am so of course by 10:05am we were headed to the car.

Just because we were running late I was hit with a bonus dirty diaper on the way to the car. I changed it and we were on our way. Just because we were running late, I had forgotten that I was almost out of gas. We stopped for gas. Just because we were running late the gas station was having technical difficulties and could not take credit cards. Just because we were running late I threw a $10 bill at the gas station attended and quickly pumped my 2.5 gallons of gas. And finally just because we were running late the highway was under construction.

I hate being late for doctors appointments. I feel like a loser when I'm late, and sadly, I am often late. I walked into the office and they looked at me a little funny - wondering how I got my double stroller up the stairs. I didn't. I rode the elevator as usual. Apparently the elevator had been out of service and the last two arriving patients had to climb four flights of stairs. So thank goodness for poopy diapers, running out of gas and road construction! They collectively saved the day!

We spent a while in the waiting room and the twins entertained everyone. One fellow patient commented that I looked too young to be there with all the old people (her words) so I told her my story. It's true that when I go to my rheumatology appointments I appear to be the only non-retiree. I know it's common to get RA at a young age like I did so I wonder why that is? A couple of us then discussed the very full waiting room and I shared my opinion: it's better to be sitting in a packed waiting room to see an awesome rheumatologist than to get right in without waiting to see a bad one.

When it was our turn the babies expressed extreme displeasure at being returned to the stroller. I think they wanted everyone to share in their frustration, and we all did. I had a much improved grip strength in my right hand but my left grip scored the worst ever. This qualified me for not one, but two cortisone shots. One in the left wrist and the other in the left middle finger knuckle. I've never had more than one before so I was feeling special (they are incredibly painful but I managed not to whimper and cry in front of my 8 year old). My rheumatologist said the double cortisone injection would hopefully help to avoid increasing my prednisone dosage. I had thought we'd be decreasing the prednisone at this appointment but I had to settle for status quo. We are going to see how I do over the next 10 weeks and we might consider increasing the Humira dosage to weekly if the RA doesn't get under control (which would be great because you know, I love those injections so much).

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.

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 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.

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.

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.....

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.

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.