So… Here I sit… blog in hand… thinking. Thinking about the messages that we hear from the time that we are young and what those messages teach us. Last night I talked to my Dassie Girl a long time about … Continue reading
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So, my determined little Dassie Girl (who has taken to liking Dassie girl more than squirrel girl all of a sudden… I think because it sounds neat, and we know what a Dassie is and they are cute) crept slowly … Continue reading
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
So, here I sit. I’m tired, but the world is crawling around in my brain. So here I sit, Tomorrow I go see my Rheumy for the first time since I was sent for my MRI. The first time I … Continue reading
Up… Hobbit Feet on… lots of water… out the door and into the darkness. My favorite time to “run”
It was so quiet this morning. Crickets, owls, and just a little bit of traffic. Into the dark, into the quiet.
It was a fast walk… 1.7 miles out and 1.7 miles back. I was going to do the big circle, but there aren’t nearly enough lights in the park at o’dark thirty to make me feel even halfway safe, so after a quick drink next to the pool, I turned around and retraced my steps.
Lion King and songs from the 60s kept me company.
By the time I got back to nearly home, I was cooling down to Yoga Walk. Hair dripping sweat down my back. Hobbit Feet feeling the road. Stretching and listening to the quiet…
I feel sore but the shower helped… Eggs for breakfast… coffee and water… and… I can so do this again… which makes me feel amazingly good right now
Posted in Fitness, Half Marathon, Journalling, Vibrams
Tagged healthy-living, nature, outdoors
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
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So… Here I sit, beneath the lightening sky. The morning star slowly fading in the dawn sun. Peanut is laying a short way away on the cool cement of the back porch. I wish I had my rocking chair out … Continue reading
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
I’m trying to decide how I really feel, right now, about adventures. I’m trying to stay my Mary Sunshine self… but it isn’t working. I’m scared and thinking that maybe not knowing really isn’t such a bad thing.
I was having weird hip pain for a couple months. If I keep taking industrial strength Napproxin, it takes the inflammation out and takes the edge off the pain. I can stay reasonably good. Sometimes it hurts a bunch… but mostly I’m okay. But I can’t keep taking industrial strength Napproxin indefinately… so my Rheumy said that (if I stay off of it for 24 hours) if it hurts at least a 5, I should get an MRI to find out what is going on.
It hurt more than a 5… so I scheduled the MRI. It was with contrast. I should have known this wasn’t going to turn out as expected… when I got to the local MRI place, the machine had JUST broken down (yay me) and I would need to wait an additional 5 hours and drive 35 miles one way to get to the only other place I could get in unless I wanted to wait another week.
No… I was not going without NSAIDs for another however long… 5 hours it was…
I like the one where I ended up going. They gave me music and a cloth to cover my eyes and they didn’t blow out my vein when they gave me the contrast. It still took an hour, but it was a less sucky hour.
That was Thursday.
I knew my Dr only works till noon on Friday and I didn’t expect to hear anything then…
Yesterday, when my phone showed her office… I expected her nurse… or PA or whatever…. It was the doctor… not the best sign…
The good news… my hip is fine. I have a little bursitis in the joint which will clear up with time. Also reasonably good news… what is going on isn’t my back (L5-L6 vertebrae) or the nerves, disks or degenerative disease.
OH boy… the GOOD news is that the two things I was concerned with weren’t involved. WHAT was the bad news. NO no no, I really probably don’t want to know…
My uterus is enlarged. And being pushed out of its normal position by a fibroid tumor that is the size of my uterus. I need to find an OB-GYN who is willing to see a new patient this week (THIS week? REALLY? geeze) to talk about what now. I found one. It wasn’t easy, but I found one (most won’t see new patients before middle of July). Apparently, my uterus is pushing against my hip.
I had a back MRI last year that none of this showed up on. THAT MRI showed my ruptured disk and pinched nerves and that happy stuff… but no one saw this… so whatever is going on has been in the last year.
So, I have an appointment. And a computer and an internet connection. So, I’ve been digging. I pretty much know what I’m going to hear on Thursday. I’m going to need a hysterectomy. I’m not sure when I would get surgery, but it will prety much mean a hysterectomy… I told a friend this morning that it will only be a hysterectomy. She is thirty something and fighting her own battles but when she heard “only” a hysterectomy… I could almost see the astonishment at the comment. I had to smile… I understood the astonishment. It was an unsual statement to make.
But… I’m looking down the barrel of menopause anyway… and I get migraines all the time… and… if this will help get rid of the problem, then, it really is just a hysterectomy.
I have a computer and an internet connection… and I did REALLY well in online retrieval class (which is either a really good thing, or a realy bad thing, depending on your perspective… ) I know that I have a 1 to 2 in 1000 chance that this is cancer (a little higher chance because it is associated with menopause).
I know that, if I have to have surgery, I have to stopy my Humera… Last year I had to stop my Enbrel and after I restarted it, It never worked as well after that. I’m scared that will happen with my Humera. I don’t want to go back to having more than 2 involved joints. I don’t want to have to be tied to infusions every 6 weeks. I’m not sure if I’m just fundamentally messed up or not… but I’m more scared of what might be than what probably will be… maybe because I know what happens when my RA gets pissed…
So, my adventure continues. I’m not sure I’m up for this one, but… it is what it is…
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