Happy New Year’s everyone! Hope everyone made a healthy and happy entry into the new year.
We spent New Year’s Day outside. It was in the mid-sixties here in Kansas, a good day for yard work. Cody’s friend Sullivan came over, and they spent the day doing target practice with Cody’s compound bow and Sully’s long bow. Carsten hung out with BB and I, (when she wasn’t professing her love to Sully that is), while we got a good start on picking up all the piles of Cedar wood that the tree trimmers left us. We drove around the property with the truck and trailer while she played in the front seat with her Princess sticker book. BB and I would pile the trailer full, drive back to the house, and stack it next to the rest of the wood. We found a mouse house in one pile! If your ears hurt on Sunday if was probably because you could hear my screaming all the way from Kansas! Mr. Mouse had a pretty nice set-up, a nest under a metal bucket in the woods. All nice and dry. He scampered into the nearest wood pile, where BB disturbed him again, and then he leapt about three feet up into a tree and started hopping to the top! That FREAKED me out! I suppose it is rational that a mouse could climb a tree, but it is pretty freaky to see it! The rest of the day I kept replaying that scenerio in my head, (thank you steroids), if he would have jumped to the right instead of the left it would have been my leg he was scampering up! Gives me the ebbie-geebies just thinking about it. Kind of puts a whole new spin on taking a walk through the woods, for me at least. Now I look at the trees and don’t see pretty evergreen trees, I see potential mouse catapults.
ANYWAY. The next day was Cody’s 11th Birthday and my parent’s 35th Wedding Anniversary. We went to Wichita for the day. We did some shopping and ate lunch at The Macaroni Grill. I forgot to take my medicine in the morning though, so I was pretty messed up by early afternoon. We headed home before my parents did, and within a half hour of getting home and taking my medicine I was crazy Steroid Mommy again. I was up that night until midnight again, fighting the desire to not go to bed at all.
Today is the first day of tapering Prednisone. I am taking 30mg now instead of 60mg. I can already feel myself turning back into a lazy ball of goo. It takes the edge off of the manic cleaning feelings, and I suppose that is good. I am starting to see drawers as drawers again, not as oppurtunities to organize. All this activity has sent my joints into a tizzy. A few days ago I was reporting that my ring may slip off my finger from lack of swelling, today I can barely spin the darn thing. Joint update for today; if it bends, it hurts. I am like the STAY-PUFF MARSHMELLOW Mom. All big and round and swollen. Prednisone gives you what is called “moon face” too, you retain a lot of water and the most noticable place is in the face. I don’t like the looks of that. Why oh why can’t drugs have GOOD side effects? How about some common side effects like; makes the appearance of cellulite shrink, may notice decrease in the size of your thighs, clear skin, makes your fingernails long and strong, teeth whiter, hair longer, hair on your legs stops growing, etc…….
I suppose I am my worst enemy though too. I know I have been doing more than I should lately, and that I should be pacing myself. Even when the need to clean is INTENSE I know I should stop, but it is hard to do that. I want to take full advantage of the time I have, and that time seems like it is so short. Which is why BB says I am functioning with 1/2 of my powdered muscles today. Poor guy, after only two days I think he was really getting weary of coming home to all the “surprises” I accomplished while he was away. To him, half powdered power is a good thing, to me it is just plain sad.
The mettalic taste and all other related food issues have dissipated though. I am back to being a chow hound. It will be interesting to see if I have the same reactions after the next infusion, which is a week from today. Kasee is driving me to Wichita and dropping me off, and then BB is going to come pick me up in the afternoon. That way no one has to sit there with me while I drift off with visions of chewing tin foil dancing in my head……
I have a new friend named Becky, and she lives in New York. We started e mailing from the online RA Support group I belong to. She is the same age as me, and we have had RA for almost the same amount of time, (her just a little bit longer). A lot of our experiences within the cycle of the disease, the drugs we have taken, and our responses to the treatments are the same. It is really exciting to talk to her, kind of like finding a long lost twin you never knew you had. I don’t know if she is too excited about the ten page e mails I have been sending her almost everyday, but maybe it will take some pressure off of everyone else.
Sometimes it feels like I have had RA so long now that I have forgotten what it feels like to not have it. It is hard to explain things without this guilty feeling, I want everyone to “get it”, but it is hard to explain it to someone who doesn’t have RA without everyone feeling awkward. I have difficulty finding a balance. I feel like I am either saying too much or too little. I think when I run into difficulties asking people for help/support it is not because I think my friends and family lack compassion, it is because I don’t even know how to explain it so that it makes sense and that you don’t think I am asking for pity. Since I don’t know anyone with RA, I don’t know if this a problem that most people with chronic illnesses have, or if it is just my personal problem Hopefully corresponding with Becky will help me to be a better communicator with everyone else.
Having to decrease the steroids today is a weird feeling. On one hand, I don’t like taking them, they make me a whacko. But, it gives me a little taste of how it would be to be “normal”. It makes me really curious about how my life would be different if I were not sick. It is also really scary to know that in a week I will have no steroids to depend on. Then this new medicine has to start working or it doesn’t. It is really hard for me to live in the moment, I am a real “what if” type of girl. What if it doesn’t work? How will I manage the pain of a huge flare with no other viable treatment options avaliable to me? But also, what if it does work? I have gotten my hopes up so many times, and then after a few months the medicine just stops working again. It is so emotionally draining to think about going through that again. It is getting difficult to maintain a positive and hopeful attitude. I don’t know anyone else who is trying or has tried Rituximab for RA, so there are no typical responses to research, no testimonials from people who have tried it. I am a little bit of a guinea pig. Oink, reluctant oink.
Well, sorry today’s entry has been somewhat of a downer. Usually I pride myself on being able to make myself laugh out loud. Today was more of a weak grin than an audible laugh.
Until next time ~ May all your trees be mouse free, and mine as well!