So, I have two wonderful children who are about a year apart. In fact, for 10 days they are the same age. This was NOT my personal choice. They came with the relationship, but I am so glad they did. They are the light of my life and I could not love them more if I had them myself. I had actually chosen not to have children when my husband and I met. But, I fell in love with him, and then the children when I met them.

canwememeThey were toddlers when I was diagnosed in the first year of my husband and I’s relationship – and have only known me to be sick. When they were little they just knew that mama had “owwies”.

We are explaining my issues, and now my husband’s, (who also has RA). more as time goes by. We try to explain in a way that helps them to understand what is going on in their own terms. They are only 6 and 7. It is a fun age and a crazy age, filled with hilarious mispronunciations and crazy questions about how the world works. I love the questions and the ideas they have. I just can’t get enough of them.

But, sometimes I have to say no…..

I have to say no – not because they are getting in trouble, have done something wrong, or because we don’t have enough time to do something they want to do. I have to say no because my body says no. And, my body has been saying no a lot recently.

I was on Orencia, but it began to stop working for me. I wasn’t even doing the infusions for a year when my body protested loud and hard and started to overcome whatever it could do for me. Now, after learning that because I am allergic to latex and I cannot take Humira, I am on Simponi. I have only done one dose.

Those of you who are RA veterans know what this means – it is that awful waiting period where the old medicine is gone and the new one hasn’t built up in your system so your body is going crazy until it kicks in. I am getting migraines more often, flaring like crazy at times, going through periods of exhaustion so heavy that I have to do nothing but sleep for a few days when I go down.

I work Monday to Friday and Saturday is my “sick day”. I am so exhausted from the schedule of my schooling, the kids’ schooling, work, my husband’s work, maintaining my job and getting through the week that my body crashes and burns on Saturday. I have no choice. There is nothing I can do. I usually sleep all night Friday and then sleep most of the day until between 3 and 5 on Saturday afternoon. If I am not that tired, then I have a migraine from the neck pain that has built up through the week and it makes me unable to eat, tolerate light, and I will throw up throughout the day. Once I crash and burn, I start to recover the next day although my muscles are fatigued and I feel like I just ran a marathon. I am so tired and worn out that a walk to the kitchen takes my breath away.

I have tried adjusting and listening to my body more, because obviously I am pushing too hard. But, we have to eat, right? And, we have to pay bills, right? And, homework has to get done, right? And, the kids need to eat and have clean clothes and get a shower, right? So, I am trying to slow down but I am still crashing and burning – despite attempting to listen more closely to the signals my body is screaming at me.

Now, we have a backyard but my kids don’t like to be out there without us because we have tons of flying bugs and they are both terribly afraid of flying bugs. My son thinks dragonflies are the scariest bugs alive, besides spiders. We also cannot safely allow them to ride their bikes down the street. So, in order to ride their bikes, or scooters – we have to go to a park. This is where I have to say no. My husband is in better shape than I am and ends up taking up the slack when he can. And, this responsibility is falling squarely in his lap. He is more than happy to help and just loves to spend time with the kids. He loves to take them to the park. But, he usually works weekends and with his health he can’t squeeze the park in before he goes to work. It is just too much.

But, I have to say no when my son has tears in his eyes because he has been asking me since Thursday if we can go to the park for the weekend and it is now Sunday and I don’t feel a whole lot better. I have to endure him asking me several times with the longing plainly in his face. I have to see his face cloud over by Sunday and the disappointment take over his lovely features as he asks me again and knows the answer – No, I cannot take you. I don’t feel good.

I have no problem telling my kids no. It is healthy and important. I have taught them to only ask me once, and if I say no then don’t ask again. So, my son will ask one day and then wait until the next day and ask….then wait until the next day to ask again.

My heart is broken because my soul says yes but my body says no….

I am sorry son, I cannot take you to the park and sit on a bench while you play. I cannot take you to the park and walk around the track while you ride your bike. No, I cannot drag my exhausted body out into the light without throwing up and my head splitting in two….my body just says no.