Arthritis Mom

We took the kids to a baseball game last night. I was walking around with one of the babies and noticed many people there with visible illnesses or disabilities. To them I look like any other mom walking around with her cranky baby. On this night I was feeling lucky to have an invisible illness. I always say if you have to have a disease there are worse one's to get than rheumatoid arthritis, and the visible/invisible factor is another reason this is true. If I want to share my invisible illness with someone it's my choice. If I want to pretend I am healthy and normal, most days I can. Even when my foot hurts people easily assume I sprained something and it's temporary, not a chronic illness that I will be dealing with every day for the rest of my life.

There are many with rheumatoid arthritis who's illness is visible, who need canes or wheelchairs to get around and who have noticeable joint damage. There might be a day in the future when I don't have the luxury of faking it. So for now I think I'll count my blessings.

It's been a long time since I sat in a college classroom. Last night was my first graduate studies class and it was fun! I'm definitely ready for something new.

The professor went over the syllabus and there was a section covering disabilities. It was standard language about requesting special accommodations if you need them. I don't need any now but who knows when I might need accommodations in the future, in school or the workplace or wherever. A society should be open to providing assistance for even the often hidden disabilities like rheumatoid arthritis. When I went to college years ago that language was not included in the syllabus or covered in class, even though the American Disabilities Act had already been passed. I know our society has room for improvement when it comes to people with disabilities, just ask someone with an invisible illness who has used a blue parking tag. But I also see improvements, increased awareness and acceptance in a lot of places too. For those who are part of the effort, it's noticed and appreciated.

I thought the order goes first sit up, then crawl, then walk, and finally run. My little boy has a different idea. He's ready to walk but has decided to take a detour and work on climbing first. Yesterday he climbed up on a box. This morning he climbed up on the fireplace hearth. By this afternoon he was working on wedging his little toes in between the cushions so he could scale the couch and checking out the side table for vertical possibilities.

I admire his determination. When I tell him "no" he gives me a gigantic grin and keeps on going. Sometimes he stops for a second when he looks at me but his knee goes right back up in an effort to go higher. He can't help himself.

It was a good RA day for me. And it's a good thing because I needed the energy and quick reaction time. I am told my oldest stepson was breaking other babies out of the infant room at his daycare as soon as he could walk, and by 18 months he was borrowing the keys and backing the car into the front yard. So a little bit of this might be genetic.

I wonder what tomorrow will bring.

I was thinking the other day about how much rheumatoid arthritis is part of who I am. During and after my diagnosis I worked to accept that I had this and even embrace it.

But it's often a secret part of who I am. I can't go around having everyone feeling sorry for me. I don't want pity. When other parents see me lugging twins around it might look to them like a lot of work but they don't know about the pain that comes with it. When I look tired they don't know about the fatigue that I'd have anyway. Even when I do tell people, I tend to minimize what it means to my daily life.

I can't think of anything else that is such a big part of my life that is mostly hidden from others. I feel like some epiphany should come from this realization and I was going to post about it, if only I could come up with a point to make. Then yesterday I checked my arthritismom email and found out that National Invisible Chronic Illness Awareness Week is coming up soon. Oh heck, that's right, I'm not alone!

This year National Invisible Chronic Illness Awareness week is September 8-14. They have a website and a blog where you can read more about it. It's not just for the couple million of us with rheumatoid arthritis, but those with depression, diabetes, eating disorders and other chronic illnesses as well. They have some good articles about invisible illnesses and the issues you face when people don't know you are battling something every day of your life.

Mostly I think it's fun to say. National Invisible Chronic Illness Awareness week. It's a mouthful, but catchy.

Today it's not so invisible. My right foot is swollen and painful, my 11 year old stepson just informed me I am walking with a limp, just in case I didn't realize. I did realize. Hopefully I can get back to being the invisible arthritismom tomorrow.

The twins are on the verge of walking. I have received numerous warnings that when they start they will automatically run in different directions causing me to split in two in order to save them both from certain peril. This may be true but I'm excited anyway. I'm hopeful that having them walk with me is easier than carrying the both of them everywhere. Yesterday I was able to encourage both of them to crawl to me for a diaper change instead of chasing them down like I usually do. Being able to tell them what they need to do and have them understand me is another big step forward. These milestones are going to make my life easier especially on bad RA days. I think. I hope. I'll let you know either way.

I've been watching the Olympics and as usual I am amazed by all the athletes. The amount of work and determination they all have to get where they are is unbelievable. They all look so fit, healthy and strong. I can't imagine the hours they spend training.

It makes me wonder why I lack the motivation to do simple regular exercises. I don't have any sports related skills to perfect but I do know regular exercise makes my rheumatoid arthritis better. I know this because I have had times when I have exercised regularly. But right now it's not part of my daily routine so it just does not happen. As much as I want to count it, I don't get that much of a physical benefit from chasing after the twins or even carrying them out to the car one in each arm. It's not just the RA benefit I need, I've got some pregnancy weight still haunting me (prednisone certainly doesn't help) and I'm sad to say that flabby part on the back of my upper arm has made waving goodbye a thing of the past.

So is it okay to have a new years resolution in August? How about a new school year resolution. I will prioritize exercising and make it part of my daily routine. Starting tomorrow. I'm pretty sure.

Not long after developing rheumatoid arthritis I changed jobs. I did so in part because my job was stressful, and I knew that reducing my stress was a key to managing my illness. Over the years I've been conscious of my stress level and always made major decisions with that in mind. Stress isn't the only consideration when making major decisions. I became a stepmom and had twins, so I'm obviously open to adding some stress to my life. But in both cases the benefits are huge - I love being a mom and a stepmom.

When the twins were born premature my husband and I agreed I would stay home with them. Staying home can be a stressful job especially with twins, but I think it would be harder if I were working full time and juggling everything else too. For a long time I have wanted to change careers and not working has given me the perfect opportunity to do it. I've found a graduate program that offers part-time evening classes and is not far from my house. Classes start in less than two weeks. I'm really excited and about to find out if I can balance being a wife, mom, stepmom and student along with my rheumatoid arthritis. Something tells me I can.

Side effects are a reality of most medications. I've been lucky when it comes to side effects. I've had bone loss from taking prednisone, but prednisone wasn't ever supposed to be part of my long-term treatment plan. I do take extra calcium now to combat the bone loss, just as I take folic acid to help minimize the side effects of methotrexate. Unfortunately even with the folic acid I have had some hair loss. The first time I took methotrexate the hair loss seemed to stop after about a year or so. Now that I am back on methotrexate, the hair loss is back too.

I'm not going to lose all my hair, just some. Compared to liver damage, bone loss or stomach problems a little hair loss doesn't sound so bad. Really, what do I even have to complain about?

Well it's my hair! I don't want to see globs of it coming out. I just don't. It's not only troublesome because it's my hair and I'd rather keep it, but it's messy. It's all over my clothes. I'm constantly feeling it on my arms and I can't get rid of it. I feel like a dog shedding for the summer. It's all over the babies. They already liked to grab my hair and pull. But now even if they don't grab my hair, it ends up in their little balled up fists when I pick them up because it's all over me. It gets all over the floor where they crawl.

I know I can't change it, I have to accept it as a reality of my rheumatoid arthritis treatment. So I guess the only thing left to do is add "more frequent vacuuming" and "lint brushing the babies" to my list of things I do to combat the side effects of my medications.

I don't want to rate our return trip from Colorado. But if I were to use the rating system from our trip out to there - the first part of our trip (through the airport and onto the plane) would score "lots of room for improvement." It did not go smoothly, mostly due to my stress level. My foot was in terrible shape for the trip home and I'm sure that contributed to my crankiness and stress as well. Stress can cause your RA to flare and a flare can cause you to feel more stress. A vicious cycle.

Once we were on the ground the stress evaporated (although my foot still hurt terribly). We had an easy time getting our luggage. Everyone was happy and joking around during the drive home. We walked in the door and it felt like we had been gone a month. It's good to be home, but I'd turn around and go right back if I could.

It was bound to happen. The last day of our trip I over did it and my rheumatoid arthritis is making sure I know how much. I wanted to fit everything in so I woke up around 6am to get myself my children ready early. I needed my sister's car so I dropped her at work and took her two children and my three children to visit to our grandmother. I really wanted to see her one more time before we left and I knew she'd love to see the twins and the other kids again. I spent most of the visit keeping the babies from breakable objects and from chewing or pulling her oxygen tank tubing. I was exhausted almost as soon as I got there but it was definitely worth it.

Then my parents and I took the children to the science museum (my husband had taken his boys to the mountains for some adventure bike riding). We ate lunch and then walked and walked and walked through the museum.

We drove back to my sisters house, ate dinner, got the babies bathed, bottled, diapered and in bed. My parents stayed with the babies while the rest of us went to a baseball game. The walk from the parking lot to the stadium would not have been too bad if not for all the other activities that day. We had a one hour rain delay and didn't end up getting home until around 11pm. A very long but very satisfying last day of our vacation.

Unfortunately my right foot is very upset about all this activity and I'm having that overwhelming urge to remove it. Not the whole foot, just a 2 inch sized middle section in the ball of my foot which is throbbing in pain. Couldn't I still balance if I had most of the foot in tact? I know, I know, that is silly. The foot is a well designed body part that really does need all the components to work properly. It's probably better to get rid of the entire foot.

I am staying with my sister on this trip home. Today she was at work and my husband had to go work for a couple days himself, so it was me and 8 children. It was scary but we did survive using these simple arthritis mom survival tips:

> Get up early and shower quick (you won't get another opportunity)

> Do NOT forget to take your medication (you will need it more than ever today)

> Make sure you have plenty of cereal, milk, bread, lunch meat and ice cream (the ice cream is for you)

> Get some exercise (ie. chasing babies from room to room, sprinting to the bathroom when you have a free second, getting up and down from the floor 10 dozen times)

> Have younger children take naps (consider taking one yourself)

> Take advantage of any voluntary helpfulness from older children (even if you must insist)

> Call in reinforcements (aka loving grandparents).

By following these few easy tips your rheumatoid arthritis should not hinder your ability to manage all the kids and keep your sanity. If something goes wrong, review the list. Most importantly, check that you took your medication, stop and take a few minutes to exercise or plan a bonus naptime for the younger kids and yourself. If all else fails, well that is what the ice cream is for.

I always get homesick when I'm home. Knowing I'm here for such a short time only makes it worse. I moved away 14 years ago and I don't think I had a good reason. It seemed adventurous to move when I was younger but you miss a lot when you aren't near your family, and I didn't appreciate how much back then.

After I had my oldest daughter I realized it was better to have family nearby, so they can see her grow up and be there for her special events. I grew up with lots of cousins around and big extended family holiday celebrations, I wish I could give that to my children. But she was just a baby, and it didn't seem urgent then.

I was trying to remember when I really started thinking of moving home, really thought about job hunting and planning it. It would make sense that it was when I first developed rheumatoid arthritis symptoms. But it wasn't then. When I was going through the diagnosis life was chaotic and uncertain and I just took it day by day. By the time I got the diagnosis my marriage was ending so even more chaos. Back then getting my life in order took all my focus.

It was after my life settled down and my rheumatoid arthritis was under control. Having rheumatoid arthritis made me realize life is too short and once I had rebuilt my life as a single mom with a chronic illness, I realized something new. I proved I could do it all on my own but I no longer wanted to. Needing others is part of living and I needed my family.

It was not meant to be though. My ex-husband was not interested in moving home and I made a promise that I would never take our child away from him. So I stayed put and worked on being happy with that outcome. I am happy with that outcome. I would not have my husband, my stepsons or my twins if not for the decision to stay and I wouldn't trade a single one of them for anything in the world.

Even with all the rationalizations and facts that can't be changed, I'm still homesick today. I still need my parents and my sister and the rest of my extended family. It's tough to need something you can't have. We do our best with phone calls and email and trips but nothing is as good as having them over for dinner on a regular basis. My hope now is that I can convince our children that they should settle down close to home for all the reasons that I wish I could come home to stay.

We made it, and it went fairly smoothly. Here are my ratings.

1 = lots of room for improvement
2 = could have been worse
3 = not to shabby
4 = very nicely done
5 = watch and learn

The Departure. I give credit to having an afternoon flight because it left plenty of time for waking up late, eating, finishing packing and loading the car. I get credit for being mostly caught up on laundry the day before. We left a couple minutes early. As a family we scored a 5.

Airport Arrival. My husband dropped us all at the curb so we could check the bags and he could park. My two oldest stepsons filled out luggage tags while the two 8-year-olds sat on the sidewalk with the babies. My husband got back from parking and noticed I was a little hyper and panicky even though it was going super smoothly and told me to take a deep breath, which I did. In my defense, all those kids standing there with all those strangers walking by and all the bags trying to get 1/2 of them checked was unnerving. I give myself a 4 for being prepared and we all get a 5 for execution. The incredibly friendly and helpful Southwest employee who spotted us unloading and helped us right away without having to get in line - he gets a 5 too.

To The Plane. After checking our luggage, I changed diapers and got babies into the stroller, the kids got the car seats into bags, and my husband returned to the car to retrieve his carry on item. We got to security and the stroller went one way while we all went another. My oldest stepson and I each carried a baby while my husband got the rest of them to remove shoes, put bags on the belt, through the metal detector, retrieved the bags and shoes and moved off to the side so we could regroup. At the gate we used our carry on bags, the stroller and a row of chairs to create a makeshift play area for the babies. We took turns running to get food and making bathroom trips. Just about the time we were all getting restless it was time to board the plane. We got on the plane and found seats relatively close to each other. I give us all a score of 5.

Plane Ride. I feel bad for the people waiting to board wondering how obnoxious two 1-year-old babies can be on a 4+ hour flight. They did amazingly well in my very humble opinion. They ate, they played, they slept. Both babies were fond of the teeny tiny changing table in the teeny tiny bathroom. My son needed one change of clothes due to drool and spitting up, thank goodness I remembered to pack spare clothes at the last minute - that would have certainly lowered my score. We got off the plane exhausted but all in tact, nobody crying or freaking out, and given hat we were up against I give us a score of 4.

The Arrival. I was unsuccessful at renting an 8-passenger vehicle. The only one I could find was off-site and not available until 4 days into our trip. After much discussion and deliberation, we decided to rent a 7-passenger minivan and have my sister pick us up at the airport. We got our luggage while my husband went to get the rental car I headed to the curb. My sister pulled up and took two of our children and nearly all our luggage, and handed me directions to her house. I got the babies out of the stroller and into the car seats just before my husband pulled up with the rental car. I was a little stressed getting the babies and everything loaded in, it came out of nowhere but I got a little snippy. So for that I give myself a score of 3. My husband and kids get a score of 4.5. My sister gets a 5 for picking us up, for borrowing pack-n-plays and high chairs so we didn't have to bring ours and most importantly for having dinner ready for all of us when we got to her house.

My RA. My feet get a score of 2 and my energy level gets a 1.5. I was running back and forth all morning finish up packing, and doing last minute things for the house. It's no surprise with rheumatoid arthritis that my feet were hurting even before we left. I could feel them swelling during the plane ride but I think that happens to people who don't have rheumatoid arthritis. The day after my feet are feeling particularly beat up and swollen, my energy level is very low and my wrists hurt a little. My husband took the older kids white-water rafting but the babies and I need our rest so we stayed home. We don't have anything big planned for the next couple days, just visiting family and relaxing which is perfect.