So… here I am, faced with my ultimate dilema. I’m starting to feel human again. I can make decent tme on my walk. I can feel like getting out and pushing again. I am looking forward (deranged individual that I … Continue reading
It’s Sunday August 5th. I’ve gotten past my one week post-op appointment with flying colors. The pathology report came back on the tumor and all of the removed structures and everything was benign. So, I can start to feel better and I can go back to training for the Austin Half Marathon. I missed last year because of my back. I want SO bad to do it again this coming February. Knowing that I may be physically pffft but physically fit enough to do 13.1 miles in under 4 hours clock time… well under 4 hours chip time keeps proving something to myself.
So here I am… curled up on my bed thinking about my training plan. I’m drinking my water and thinking that maybe I need to splice in some black coffee mornings rather than morning with coffee with cream or iced coffee cream and sugar. I know the extra calories won’t amount to much but mentally there is a difference.
I went looking this afternoon for the shirt I want. This year I’m buying it.
If found on ground please drag across finish line
Adam thinks it suits me very much. I think he’s right.
I’m torn… I like the other one (God, please let there be at least one person behind me to read this) but I think the Drag me Across the finish line suits me better. Of course, I like the one that says “The miracle isn’t that I finished, it is that I had the courage to start”… because really that’s true.
I know that the kids and I will go into Austin alone. Every year on Marathon weekend, bear gets sick and can’t go… He’s never seen me cross the finish line. I don’t know if he knows how much that bothers me or not.
I know that I’m doing this for me… only for me. I know that no one that I pass will understand that I have RA or what the half represents to me. I know that there are a lot of other people there that are fighting their own battles and they are fighting even harder than I am. But I’m fighting my battle with myself and I know that I can do it. No one understands why I have to do this, no one ever does… but it matters to me. It is the one thing that I do where I have only myself to rely on (myself and last time Jimmy Buffett…wonder who I will race to this time).
I know that I won’t run. I won’t even jog. I will walk every step of the way. I will walk each and every one of those steps this time in my hobbit feet. Those shoes have seen me through a lot, they are now a part of my definition of myself. They have brought me into many conversations that I wouldn’t have had otherwise. This year they will see me across the finish line.
I may not be the fastest, and I may have to start at the end of the pack and take an entire half hour to cross the starting line, but I can walk every step of the way and I can enjoy the experience. This year, I carry my waterproof camera every step of the way and chronicle my training and my race.
Posted in rheumatoid arthritis
Tagged austin half marathon, Half Marathon, hobbit feet, vibrams, walking a marathon
People think I’m kidding. I know they do. I can see it in the faces of my family members even… so I know other people don’t get it.
Once upon a time, I can vaguely remember… I used to be pretty much on the ball. I know I’m not stupid. I graduated with my BS (with a dual minor) in two years and four months… while raising two toddlers. And I maintained a 3.45 qpa. I have an MBA. I’ve published reasonably decent geek books. I only had to re-take one class (NEVER EVER EVER take 21 credits in a semester and try to maintain any kind of real life at the same time)
Not bragging… I don’t really think of it as something to take bows about… I did what I needed to do. I “got-er-done”. I’m kind of just reminding myself that, once upon a time I could multi-task and I didn’t have the attention span of a gnat………….
hey look… shiny chicken!!!!
I’m coming to understand (through some very pointed research) that what I’m dealing with is pretty much Chemo Brain.
I used to think that having kids sucked the brain right out of you… that as long as you were talking baby talk the brain cells were jumping out your ears at night out of sheer frustration. But I did my BS with a 2 year old and a 6 month old. That really doesn’t hold water so much.
Now… Now I have to put my headsets in at work to drown out the people in the nearby cubes just to get my work done day to day. Without the headsets and random music, I would end up sitting curled in the fetal position in the bathroom crying hysterically because I can’t THINK straight.
When I’m trying to make a phone call and someone is just making “being in the same room and moving around” noises, I get frustrated and I have to leave the room and lock myself in the bathroom or I can’t quite deal with what is going on on the phone. I can’t remember what number I’m supposed to push, why I’m calling, or what I’m supposed to be doing.
I’ve noticed my hearing changing. I can’t hear half the time and other times (when I’m on the phone with my headsets in to talk hands free) someone runs water on the other end of the phone, or opens an envelope, or farts sideways and I’m freaking out and screaming so I can hear myself over the din.
I get frustrated with myself so much more easily now than I ever have before… because I just can’t THINK the way I know I used to be able to think. It’s like I’m thinking through white Karo syrup. I can see through it like it is window glass, but trying to get through it (to think through it) is like trying to swim through oatmeal.
I’ve even managed to pretty much convince myself that it is ME. The problem is something fundamentally messed up with ME personally, not the me that is fighting RA.
But I remember that this isn’t me. This isn’t the me I used to be… now, I need to focus on what is really going on and coping mechanisms to help my head not explode trying to deal with my new reality. And I realize that this is part of what is happening to a wonderful friend of mine who is fighting with way higher doses of real Chemotherapy (like low dose poison for years isn’t real… duh) even if I don’t think she realizes it herself yet. Maybe… just maybe I can help…
I found this article today and it has some coping skills, some things that maybe I can incorporate with my Yoga and Meditation practice that seems very much to help me when I can remember that I matter enough to work it into my routine.
I think, though, that the best thing I’ve learned is that, this is really really real and that it isn’t just me. Maybe I can share this adventure with the rest of the people dealing with the continuing adventures of Captain Chemo (whether it is for Cancer, or HIV, or RA or any other condition that they prescribe this wonderful poison to control). My reality isn’t going to change any time soon. Maybe, just maybe I can learn how to cope and deal.
Here’s to hoping you have a fog free week.
Posted in chemo brain, rheumatoid arthritis
Tagged chemo brain, memory issues, rheumatoid arthritis, short attention span, support
Got your attention, huh? The reaction to that statement seems to be kind of varied. My OB-GYN (who is an AWESOME doctor… I lucked into one with a good bedside manner when I went on a panic stricken hunt for … 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
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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
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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.
Posted in hair, medicine, rheumatoid arthritis
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!!!
Posted in reflection, rheumatoid arthritis
Tagged Humera, rheumatoid arthritis, rheumatologist
It has been a thoughtful week… thoughtful, as in a week full of thought. I’ve decided (again??? eeesh) that it is okay to be me.
Let me start out by saying that I’m really not very good at reading people. It took me quite a while to realize that there is a very reasonable explanation for this… Aspergers. Not making excuses… some very amazing people are Asperger-ians… just stating facts. It explains why I have a very unique sense of humor, why I can’t play poker (and why I’m not invited to several kinds of meetings at work) and why I don’t read people face to face very well.
This week one person who I have come to realize really is just poking me when he says stuff comments on my Hairless Hobbit Feet and my wicked cool fingerless gloves made comments again and then did the knuckle bump thing. The knuckle bump thing gives it away… that and the fact that the first time he saw me wearing my Vibrams he told me the story about how he was out to dinner one night in town and he ran into the guy who invented them and was out trying to scare up support in one of the weirdest (keep austin weird) towns and one of the running-est towns around…
I’m still trying to work out the conversation earlier in the week when someone read my RA hands poem and made what I’m trying to decide if it was a snide remark or not… “Woo, people read what you wrote on the INTERNET…. what you wrote… on the INTERNET… wooo”. That one really hurt. I’m not entirely sure why it hurt, I really don’t fundamentally care what people think of me much anymore, but I am really proud of my poem. I’m touched and proud and amazed that it touched so many people, that so many people like it. I’ve had dead tree books published. I’m not convinced more than 500 people have read most of them. MOST of them I’ve never seen more than my advance on royalties. I’m proud of them but… you know… yeah… this poem touched people and somehow that matters more. I’m not sure if the person who commented was just poking fun or if that was really what they thought…
You, person who is such a putz that you are scared of me because of my scars, you can bite me. I’m done with the whining, I’m done with hearing about how I give you nightmares just because I had my broken arm fixed and how my horribly deformed bumpy hands scare you silly. Bite me. I’m done letting your shallow criticism hurt me.
I’m really deciding more and more that the me that I am is okay. It beats being some of the people I have been learning about this week. Hurting people just because you can isn’t cool.
I kind of like me. I haven’t always been able to say that. I can now. And that’s a good thing…
Posted in reflection, rheumatoid arthritis
Tagged aspergers, fingerless gloves, RA poem, sense of humor, snide remark
Lots of quality Rheumatoid Arthritis Information from RA Warrior.
You are not alone
Together, we can enlighten the world
A Figment Of Fitness 