I woke up at 6 a.m. having to use the restroom. I couldn't manage to fall back asleep, so I got up and dressed and accompanied my husband to Savannah to pick up my prescription slips so I could finally get the medication I needed from the pharmacy. We stopped at my favorite little bakery, Back In The Day, and got drunk blondies. Trever also got himself a Bourbon bread pudding pastry, and I got one that was lemon cream. We were back home shortly after 10 a.m. and I was already exhausted. I laid down for a minute and woke up four hours later. Thank God for teenagers to help out when their mom crashes unexpectedly.
This afternoon I helped Liberty with her homework, which was all about sentence diagramming and identifying different parts of speech. I am like, super good at this kind of stuff, and impressed the snot out of my daughter. Good times.
We are making nachos for dinner because they are quick and easy and because this week has already seemed very, very long, and it's only Thursday. We managed to use our Kroger fuel points when we filled up our van today with gasoline, and ended up paying $1.26 a gallon. It was like an ode to 1998. We high-fived each other and felt momentarily gleeful and fought the urge to play Gettin' Jiggy Wit It on the radio. This is bound to happen when you get a killer deal on gas and happen to drive a 15-passenger van.
I just sent all of my children outside to play because the weather is mild today and they were driving me crazy indoors. Too much pent up energy. I think the reason there were less violent crimes in my mother's generation was because children were sent outside to play a lot more. The only one inside with me right now is Dylan, who has discovered the Garage Band app on my Ipad and is experimenting with songwriting. It's a little irritating to me actually, because I'd love things to just be quiet for a few blessed minutes, but I don't have the heart to tell him to stop being creative. For all I know, he could be the next Elton John or Billy Joel and if I force him outside to play football today he might give up all that musical genius and become a plumber instead. Not that there's anything wrong with being a plumber. Well. Except when you could be Elton John instead. There is a very good possibility I am over thinking this, yes, I realize that.
I talked to my dad on the phone this afternoon. It was good to hear his voice, his casual chuckle, his soothing shushes to his Springer Spaniel. We talked briefly about my brother and then he had to go, feeling worn out from his work week, and I didn't get to tell him what I really wanted to tell him, which is how nice it's been the last couple years discovering I really like my brother. I did not like my brother much at all growing up, we fought constantly, he drove me crazy. But the last few years, we've gotten to talk, like- really talk, and I enjoy him, which surprised me at first but now I've just settled in to our relationship and feel warm every time I think about him. Who'd have thunk it?
I've felt less pain over the last few days, so I've taken less pain medication, which makes me feel much more lucid, and this makes me happy. I am still remarkably exhausted, and very easily worn out, but I am grateful that at very least my pain level is minimal. Medication really messes with me, and I have to take quite a lot of it every single day. I don't think most of the people I spend time with really realize how sick I am. I don't think they understand that sometimes I repeat my stories or over-share because I can't remember, because my short-term memory is fried, because I can't recall that I've already told them this story before. My medication is always being adjusted, and I am always adjusting to it. A lot of the time I feel out of it.
I try to force myself to meet with my friends on Sundays and Tuesdays because I truly love this group of people, because there are relationships I have tried to honor and nurture over the last year and my attendance despite sickness testifies to this. But I sense a lack of understanding within this group of precious people. I don't think they understand that most days, I am unable to leave my house, that in addition to my Rheumatoid arthritis and fibromyalgia and Raynaud's disease, adding to my depression and anxiety and OCD and chronic fatigue disorder, I have developed a new heart condition called pre-synchope, which makes passing out in public a real possibility.
The thing is, I don't look sick, not really. But actually, I am, I'm nearly disabled.
I usually have to take a LOT of medication to leave the house. Sometimes this makes me appear almost normal. Other times, not so much.
When I am flaring from R.A., sometimes my wrists become so swollen that I can not squeeze a toothpaste tube or wipe my own behind. I can't turn my palm over to receive the pills Trever doles out to me, sometimes he has to put them directly into my mouth. I can't stand up for long without feeling dizzy, and my head is usually foggy from medication. I forget to eat meals because I rarely have an appetite, and sometimes I can't eat at all because my medication makes me nauseated and I can't hold food down, and yet I have gained weight because I have been on steroids for over three years, trying to get the massive swelling in my body under control.
I take baths usually because I can't stand long enough to shower. Sometimes I struggle to lather shampoo into my short, cropped hair because my arms become so exhausted they start shaking and I feel like I've been lifting weights instead of washing my body. Sometimes I have to wear thick socks and bundle up with sweatshirts to go to Bible study, because they keep their house so much cooler than I can handle, and often the entire time I am there my hands and feet go completely numb. I try to read books but can't focus very long and have to read the same passages over and over before it sinks in. My knees and ankles often feel like they are on fire.
These are just realities for me.
I've talked a lot in the past year about struggling with my faith. It's because my body is very actually falling apart, my life has been reduced in so many ways, and I'm having a hard time understanding why all of this is happening to me and how I'm supposed to react to it all. I want to live a much more grace-filled existence, I want to experience defiant joy in the midst of difficult circumstances, I want to believe all things happen for good... I really do.
But I think all I've managed to do is become that person at Bible study. You know the one- the one who never shuts up, who always seems to be griping about something, who is always struggling with something or other. Sometimes I get pretty sick of myself, so I'm sure I must annoy others at times too.
I really don't have a solution. I plan to listen more and share a little less, but the truth is all I really want is to be understood. Maybe for all my words I have failed to choose the ones that will yield this result.
Today has been a good day. I am tired, but I feel okay. I am actually hungry and looking forward to nachos.
Perhaps the thing I should focus on is that, while I am sometimes frustrated that I lack answers, I am still seeking. My heart, though tender and sore in spots, is still open. I feel fragile and yet surprisingly resilient all at once. I look around me and can still see so very much to be grateful for. I have nine amazing children and a pretty darned awesome husband and a little dog who adores me. I have food in my refrigerator and clean water to drink and bathe in. I have central heating and air conditioning, I have a roof over my head, I have a drawer full of fuzzy socks. I have a drunken blondie waiting for me in a cute little box tied up with string. I have good, strong coffee to go with it. All in all, not too shabby.
As dusk approaches, I am mindful of these things.