Broken Graft I grew up on a farm. It wasn’t a formal farm. It was a family farm. Even when I was small it had fallen frequently to disrepair. The walls of the barn were even then being pushed out … Continue reading
So, Sunday I finished the half marathon again. It wasn’t easy. It hurt. And my time was way off. And I realized since then that there is a good reason for that.
I am now just as bad as I was the day I was diagnosed (maybe a little worse).
All of my toes, my ankles and one knee are involved. The Rheumy said that she would buy into the fact that it was post half marathon swelly squishiness but I only ran on my feet, and my fingers (all joints) and wrists and elbows and shoulders all seem to be involved now, too… and I didn’t run on my hands.
She was going to keep me on what I was on before and add in Plaquinil… but that will really only help if you have a couple of joints that are being difficult, not if you have back-slid to way where you were before.
So, I’m going to be starting (if the insurance approves it) infusions of Orencia in the next couple weeks. IV drips for 30 minutes every 2 weeks for a month or so then once a month.
I knew my hands have been hurting a lot. I’ve been toughing it out a lot. Using a lot of Tiger Balm (like it is hand cream) and taking a few more Aleve than is probably prudent. I guess there is a good reason. There is a good chance that my hysterectomy changed my body chemistry enough that the Humir a just gave up and now I have to work through whatever it is that is pissing my body off.
The adventure continues.
I did finish though and I did get the bling. I’m scared I will never get to do Disney now… and I have to do Disney at least once.
Posted in flair, rheumatoid arthritis
Tagged body chemistry, Half Marathon, health, plaquinil
No, not me. My baby boy. But, as anyone who doesn’t live their life in a vacuum, the act of coming out as gay doesn’t affect only the person who is actually doing the coming out. It effects everyone. But how … Continue reading
Well, technically, the eve of the spring semester for the kids at college, but you know… it all kind of seems like the same thing.
Mondays and Wednesdays are going to be an adventure. Two different campuses, with work about 33% of the way between the two campuses. Drop Squirrel Girl at campus 1 at 7, Drop Skinny Butt at the bus stop a mile or so from work, work, make sure Adam gets to the bus stop by 4, hopefully leave work at 4 (pager week this week… I REALLY hope I don’t run late) pick him up on the way up to pick her up then home.
Neither of them is going to have a great Monday/Wednesday either. He has absolutely no time between classes. She has ten minutes down time between 8 am and 4:30 pm. She is going to have to carry her book back pack as well as her camera bag backpack. It’s going to be a long semester. BUT I think it is going to be kind of an exciting semester! I’m looking forward to what the semester brings. Wonderful new pictures, boosted self confidence for them both. I think it will be a good spring.
Something tells me that supper time twice a week is going to be kind of late and very “inhale everything that isn’t nailed down”.
Posted in Beginnings
Am I REALLY that weird?
And before my kids (on the off chance that either of them actually read this) have a chance to chime in, yeah, I realize that I’m really kind of that weird in MOST ways… but… am I REALLY that out of the norm?
I don’t think I am because I’ve talked to people at work who are “like me” and they are a lot like me.
I have RA. Duh…
I hurt (big shock there). Some days more than others. Some days really nearly approach what I can remember (from half a decade ago… when normal might have been). Some days it really is like someone poured crushed glass into my joints. Most days I ache but I can take enough of the edge off to not let it rule my life.
Thank heavens that I’m not disabled… at least not yet.
I have days when it depresses the crap out of me. Again… duh…
But as a general rule, I figure dwelling on the why me… being debbie downer… why waist what energy I do have on being whiny about it? They say it takes fewer muscles to smile than frown. Fewer muscles, less work. Logic dictates that means that if I smile (even if I don’t FEEL like smiling) it is less work.
Shutting up is less work than bitching.
If I can lose myself in music (irrespective of what the music is that I chose) then I’m losing myself and not getting upset.
I understand that there are times when you really just need to dump on people who understand. Hell, sometimes you just need to dump, it doesn’t matter if it is on someone who understands or not… but I just don’t understand how can anyone spend so much time dwelling on the worst part of their lives?
Maybe I am that weird. I know that when I’m in the middle of a flair, I TOTALLY don’t feel like being mary sunshine. But I keep remembering… Whether you think you can or you think you can’t, you are usually right
Posted in rheumatoid arthritis
Tagged ache, debbie downer, flair, health, mental-health, positive, think positive
Okay, let me start out by saying that this in not a pity party post. It isn’t a boohoo my life sucks post. It is actually (at least in my own head) a very positive post. Read into it what you will…
I never wanted to have RA. It wasn’t on my bucket list or my to do list or my five year plan. It wasn’t.
Hobbling into the hotel from the parking lot at Disney wasn’t on my To Do list.
Lumps and bumps and swelling and pain. Nope, not there either.
But sometimes you get blessed with things that aren’t in your plans.
Yeah, you read it right, blessed.
There are days when I don’t look on it as a blessing. Watching my little boy struggle with his own pain doesn’t rank up there with the better things in my days. But at least I can understand what he is going through and try to help.
But now I have been through the last three years. I can honestly say that I understand where people who are just going through their diagnosis’ are maybe going through. I’m not a doctor, but I do have some answers to some questions that just might help.
Over the last couple weeks, we have been traveling but I have been kind of keeping up with the goings on (thank you smartphone) on facebook and I’ve learned that a friend I’ve never actually hugged but who I have talked to over the years has a husband who has managed to fight cancer back into submission. And the fight he’s fought so far has woken up his RA monster. He didn’t know it was his monster, but it is.
If I hadn’t gotten my gift that keeps on giving… I wouldn’t have probably been able to understand what my kids are going through with their own pain. I wouldn’t have answers for people who are struggling with their questions. I wouldn’t be able to partly understand what my friend is going through with the pain and confusion and all of the mixed feelings that go along with chemotherapy.
If I didn’t understand, I might not be able to understand. But I do, and I can.
I know there are people who dwell on the negativity of the why me. And that is their adventure. But for me, I think maybe I understand “Why Me”… because it needed to be me so I can be there for the people who need me to be there…
Okay, okay, so I don’t do this so much… talk about places I’ve been hanging out perusing… but I’m sitting here in a less than toasty hotel room reading the “free” issue of the newest UK Writing magazine I found on … Continue reading
Here I sit, listening to the Weather Channel predict a foot of snow by tonight with 45 mile an hour winds. It looks like the plans we had for tomorrow will likely not happen until Friday. We are still going to probably go, just not as soon.
It is what it is.
It is Boxing Day. Yesterday was Christmas. And it was a Christmas to remember.
I started the day out by stopping by the house where I grew up. Intellectually I understand that nothing stays the same… time passes… things change… This was THE hardest thing I have done in a long long time.
The house is still there. There are things growing from the gutters (downward growing grass is what it looked like). The siding is disintegrating. The lights lent an air of warm coziness that really wasn’t there.
The dogwood tree is dead. The pear tree is dead. The corn crib, the wagon shed, the barn and Sonny’s shanty have all fallen down. The wishing well (the one thing I actually went to take a picture of) has no roof and the stones have fallen away. Ironically I found out what was inside the wishing well. The stones were cemented around a washing machine tub. We recycled before recycling was cool.
I took pictures. I even took pictures of the spring house where watermelons stayed freezy freezy cold and alligators guarded them.
I took a couple of rocks.
I took the heavy heart that the pictures in my mind don’t/can’t/won’t match the pictures I took. I have a feeling I’m going to be putting all of this into a story somewhere…
It was a chemo brain day REALLY bad, so the two sentences that I managed to get written were lonely and difficult. I hurt my son’s feeling because I was trying to think over the confusion about a conversation I was trying to have and he was being his wonderful self. I love him dearly and it bothers me still that I hurt his feelings.
Presents were exchanged. Tears were shed.
The most epic Pink Fluffy Stuff War of 2012 was amazing.
It’s been an interesting Christmas.
I’m tired. I’m frustrated. I’m stressed (Merry Christmas… ho ho ho). I’m aching…
Needless to say I’m not taking life in general overly well right at the moment.
Add to this the fact that I have this really cool new feature (dark tan pigmented spots that don’t itch, that don’t hurt, that aren’t raised, that really probably are nothing but which I’m totally not happy being told I should ignore because this… like the knuckle bumps and the fact that for a few weeks I could barely bear weight on my toes six months before I was diagnosed… is probably just me being silly and over-reactive) .
So, I’m venting. It’s my party and I will bitch if I want to.
People who downplay a compromised immune system have started to totally irritate me. I’m sick of hearing how someone with a compromised immune system is getting sick for some convoluted reasoning. When you have deliberately (or by the misfortune of your condition) destroyed your immune system in an effort to save your own life, you get sick. Granted some of us aren’t allowed to get sick and if we do we are obviously not as sick as other people, but that is more a genetic defect of being female rather than any other situation.
I know that if I walk passed a germ, bacteria, virus, fungus, whatever… it is going to jump out and get me. This is less my being histrionic, more being realistic. I don’t think I have malaria because I feel crappy a couple days after forgetting to use hand sanitizer and sanitizing wipes after I take the pager from the guy who has three kids at home all of whom have been to the doctor for upper respiratory infections. But if I start to cough and sniffle after a couple days, I smack my forehead with my hand for being an idiot.
I’ve been lucky. I haven’t been hospitalized yet for it. It will happen eventually. I’m a little scattered sometimes. I forget I’m not a normal person who can push elevator buttons all willy nilly and not have to hurry to the bathroom and immediately upon getting off the elevator and disinfect my hands. I try to remember I’m a freak. Sometimes I forget.
If you don’t have to worry about stuff like this, be grateful and go on. Don’t dump because some of us can’t.
I can’t just not look at dishes and assume they are clean. I can’t shrug off egg or chocolate or ketchup or whatever on a plate or glass or spoon. I would love to be able to. I can’t.
I also can’t spend all my time thinking about all the years that I have spent waiting tables and knowing that people pick glasses and cups up with bare hands by the rims. These people aren’t as careful (paranoid) about washing their hands as I am. Silverware ends up on the floor and put back in the bin. Silverware is picked up by the part that touches food. The silverware bin gets cleaned once a month. People don’t use the scoopy thing when they put ice in a cup… they scoop the ice with the cup which means their hands end up in the ice. Tables don’t get washed off as well as they should. The “check” ends up in the waitress/waiter’s mouth before it gets put on the table. Even when silverware comes all wrapped in the cute little napkins, the silverware didn’t wrap itself, it was washed (if it is metal) and came out of the nice hot dishwasher and someone wraps it. They touched the napkins. They touched the silverware.
I can’t spend all my time on it. But there are times when I remember and I dwell on it.
They I FIDO (Forget It Drive On).
But I know it is there.
I know that no matter how careful I am. No matter how careful my sisters and brothers in the “I’m destroying my immune system in an effort to stay alive” club… you can’t avoid being human.
It would be great if germs were so grossed out by us that they ran in fear when we walk past. They don’t.
Don’t dump on us because we get sick. Don’t dump on us because we are a little on the cautious side. Maybe there is a reason.
Okay, I’ll climb down off of my soapbox now. I think I will leave it sitting where it is though… I don’t know where my feet have been and I was standing on it… I will probably need to use it again later any way.
So, I sit here, listening to the wind blow the cold front through. It’s going to get chilly tonight. I’m looking forward to that with mixed feelings. On the upside, it was 84 degrees when I left work today… it … Continue reading
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A Figment Of Fitness 