Arthritis Mom

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 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.

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!

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.....