So… here we are again fair reader… (yeah yeah… it is a weird morning… give me a break)… It has been a long week… and my body is reminding me that it has been a long week. This week… Adam … Continue reading
This past week I had my visit with my Rheumy. She poked and prodded (physically and metaphorically) and she got me thinking. For starters, I’m thinking that 85% back to ‘normal’ might be good enough if it means that the … Continue reading
This gallery contains 1 photos.
Okay, so… like I said, I like my Buff. And I have been wearing it to work. It has met with some very mixed reviews. I have heard that some people like it. That seems to be what passes for … Continue reading
This gallery contains 1 photos.
Wikipedia suggests that… A person who has an immunodeficiency of any kind is said to be immunocompromised. But… what exactly does that mean? When you have RA (or any of a family of autoimmune ‘diseases’) your immune system has totally … Continue reading
So… I’ve decided to embrace the fact that I’m going to continue to be on methotrexate for the foreseeable future. I don’t think buying a wig is really me. For starters, while I do some how fundamentally “care” about my hair and the fact that I can pull it all back, now, in one of those baby clips, I really don’t care that much. It is what it is.
I found this at REI. We went during their recent ‘yard sale’ (where we found squirrel girl an awesome pair of Vibrams Hairless Hobbit Feet) and I saw this. It’s purple, so I think it is awesome anyway… but it is amazingly versatile and neat.
I may not have fashion sense, but I do think this will make a statement.
So… today was my rheumy appointment. I was TOTALLY not looking forward to this appointment. The last couple hadn’t been stellar and I was worrying myself about half sick over what she might say. I know what my next steps are and I really really didn’t want to hear them.
Got there and went right into the office (going RIGHT after lunch is a good thing). I didn’t get weighed. I didn’t have my BP taken or my temp or my pulse. That was really creepy. When Sean was there I always always always had vitals. I don’t even know that Dr Booth cared so much, it was just what we did. Today, nothing. Great. I actually wanted validation that my weight is down.
So, I kicked off my hobbit feet and my rainbow toe socks and tucked my feet under my legs to try to keep my tootsies warm. It didn’t work. “Yay” Raynauds… :0(
Dr Booth came in and we chatted and she poked and prodded. Then we chatted some more. Turns out she was anticipating my going on the IV drugs in the VERY NEAR future. I was instantly petrified. Tied to the doctor’s office for the rest of my life.
But… looks like I’m down to three involved joints, and those three only the eensiest bit squishy… and none of that squishy is in any way looking like it might even chance extra damage to the joints. I am staying on Humera until at least the end of May (when we will re-evaluate and determine if Remicade or Orencia are next). If I can hold in there at about 80% back to normal or even gain a little more ground…. I may be able to hold out for even longer on “just” the tummy shots and not have to go onto the stronger and stronger drugs.
I did get a script for Napproxin (I was coming to the end of the ones from my wrist surgery from last year) to take the edge off when I’m having an achy day.
I’m not sure if I’m looking forward to the next appointment or dreading it… but I did make it the whole day with my hobbit feet and my toe socks and nothing ached at all! Yay!!!
This gallery contains 1 photos.
I’ve been thinking an awful lot about things that people say and that people do. I’m not sure if I’m going to get up on my soap box yet or not… or if this is just going to be a … Continue reading
In general, it has been (in case you didn’t read about it) a kind of crappy feeling several days. I’ve been inordinately down on myself. I have felt very insignificant and to a great extent like a looser. I’m still feeling kind of disgusted because even among RA people I’m “sick” enough to qualify as technically part of the group, but I realize that I don’t reach nearly enough people to count as someone who makes a difference and I’m not sick ENOUGH to be held up as a poster child. It kind of makes me feel like the fact that I can actually finish a half marathon and dream of walking a Disney half some day means that I am too healthy to be sick and too sick to be healthy. Sigh… so… I will figure out how to deal with all of that.
The rest of the poor me crap that has been plaguing me, I figure I’m pretty much past. I went for a walk. I took a mess of pictures. I enjoyed a beautiful day.
I went out and played. I played in the rain and in the after rain. I got soaked multiple times, froze my tootsies and got some really interesting pictures. It kept my mind occupied and let me get out and get some much needed exercise and de-stress.
It is still promising to be a long week. Tomorrow I have my rheumy appointment. I’m kind of looking forward to it so I can find out for sure if the Humera is working well enough or if I’m going to have to add some other uber industrial strength meds. I’m feeling some better. I still ache. But… I guess that is a given.
Here is to looking forward to a better tomorrow…
Tuesday, my baby girl gets injected with radioactive die and will be stuck laying on an xray table for two hours for her HIDA scan. I’m worried. I don’t like that she is getting so irradiated. But she is still puking and that worries me even more than the radiation. so… I will worry and suck it up.
I am still not completely back to Mary Sunshine. I am still worried about friends and family and what is being faced tomorrow and over the next couple weeks. But it is starting to feel a little bit like butterflies after the rain. There are still weeds. But at least the weeds are blooming and there are butterflies dancing and playing in the warm afternoon sun.
Today is just kind of a totally lame kind of day. I don’t know why. Everything is feeling that way.
Thursday night I got a text message… three “words” (except not all of them were actual words… “how r kids” was all it said). Guilt? Yeah, probably. So I did my good little girl duty (doody?) and crafted a nice long email response to the ever so personal text message. AND… everything went off into /dev/null (the great bit bucket that passes for email for some people). But… I did my duty. Will I hear back? not likely…. at least not until it is to the advantage of the texter to get back in touch with me out of obligation. Sometimes I wish she would just send me a “hi how ya doing”text or an email that isn’t telling me about how wonderful she is or how much it would be wonderful if I would do something fabulous for her. But I know better. Some day I will get my 30th birthday sweatshirt and the Christmas cards for the last three Christmases. And Peter Cottontail is hopping down the BUNNY trail… lameness
I know that I will get to hear about how much I don’t need to go spend time with my son while he is having his VEEG test week after next. I should have been there more for them when they were little, now I don’t deserve to pretend to be there for them. Yeah… it was put that way. It isn’t like I’m already beating myself up for the fact that I had febrile seizures and maybe part of this whole epilepsy thing is my fault. It’s not like I don’t already beat myself up because I worked so much when the kids were little. It isn’t like I’m not already pretty much the best in the world at beating myself up. I can’t fix it, I know I can’t fix it. But I really don’t need people who I KNOW don’t matter making sure I’m aware of how much I don’t deserve to be there for my kids… feeling lameness…
Add to the VEEG deal, he had his wisdom teeth out yesterday and I had to go to work and couldn’t be there for him for his surgery. I think that is when this whole lameness feeling started. I know it is “only” oral surgery and there wasn’t anything I could really do there… but I was 40 miles away and feeling very insignificant… and sad… lameness…
This morning, I made chili. That added to my lameness feeling, too. To start with, my mom and I chatted during our phone call this morning about stuff. One of the things was the fact that they were having dad chili today (huge pot of chili, all the kids who aren’t half way across the country would be stopping in for a bowl of chili and a chat) and I talked about the fact that I wanted to make chili because it would be soft enough to not have to chew (I forgot about the TINY little fact that tomatoes burn open wounds and Adam has several open wounds in his mouth… duh). I was supposed to tell Amandya that we would be able to vicariously participate in chili because we were going to have it at the same time. I did. It made her cry. lameness for making her cry… lameness for making Adam’s mouth hurt…
AND, I always put a jar of picante sauce in my chili. Opening the jar this morning brought me to my knees. It made all of my knuckles scream and brought tears to my eyes. That made me realize that 1. I am entirely too stubborn for my own good and 2. lameness in a whole different way… :0(
In my head, I know… yeah… I’m doing this to myself. I’m not lame (except for the ‘it hurts’ kind of way… and I just have to suck that up and realize that it is what it is) and I’m messing with my own head… but it was just that kind of day. I feel very far away from home. I feel very insignificant. I feel very very disconnected. I see how much pain and fear that so many of my friends are going through and I know I can’t help and I can’t fix it and I want so badly to help… and I feel lame… And I keep reading and re-reading the form letter that I got for putting in my “application” to be in a “hands of RA” book and realize that even among my own people I don’t fit in or belong. My hands hurt, but they don’t LOOK like they hurt… I am one of the people who are invisible enough to be invisible. I am one of the proverbial ‘poster child’ people who look healthy enough to be really invisible… and I’m not even deformed enough, I don’t even fit in with my own kind. Lameness…
So, the rain falls down and splashes against the window. The coffee is cold now but still as yummy for all of its creaminess. My shiny new Hobbit Feet (since Amandya swiped her hobbit feet back now that I broke them in and they are easy to put on) are warming (on my feet) under the heating pad. (Amandya got a wicked cool light blue and gray pair of shiny new hobbit feet too… Yay REI… she is running around with black and white striped toe socks and her hobbit feet below men’s basketball shorts and her Taco Bell hoody). I’ve discovered Buff Headware that is keeping my head warm and hiding my hair from myself (it looks better to have a wicked cool purple hat thing going on than to see how thin my hair is being… and I’m deliberately ignoring the hair restoration commercials and the “this is how you can make you marvelous main of shiny flippy amazing hair look even more amazing” commercials). The pine scented candle that I have burning by my side makes the room smell yummy… I’m working my way out of my lame feeling…
How do you shake the sulky feeling that you sometimes fall into? I’m usually the one who always wears a smile (even if sometimes it feels like a clown face). I know that I will shake it… but in the mean time, I really don’t like feeling this way.