Have you ever heard this? From family members? From doctors? From well-meaning coworkers? It doesn’t necessarily have to be about RA (or autoimmune disorders in general) but can really be about just about anything. In my case it is about … 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
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…
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.
Irony is amazing isn’t it? I mean, the very people who blow you off when you casually mention the fact that you have an autoimmune disorder that will affect the rest of your life are sometimes the very people who … Continue reading
So, here I sit. Austensibly, I’m working. Scripts are running. I’m keeping an eye on what is running. I’m getting ready for a move of the current enviornment to the almost latest and not exactly greatest technology that will get us by until a year or so from now. Knock on wood.
I smell like Tiger Balm.
I’m thinking… contemplating… the fact that I’m probably going to be adjusting my MTX back up from .8 to 1 cc starting next injection. I’ve been feeling my fingers and toes starting to ache and be stiff (okay, okay, technically “starting” might be a bit of a stretch) more and more. I’ve been wearing Tiger Balm under my fingerless gloves… I don’t see any extra lumps and bumps.. but I’m feeling like I’m using my fingers and toes more gingerly than I have been of late. So… I think going back up a little on the meds (as the doctor suggested I might) is my next step. Probably should call the doctor and let her in on it… but… it is what it is.
I’m kind of sad thinking that I’m not doing any better than I am right now. I’m going to put myself through some less than exciting loops and jumps tomorrow at soccer practice. I will probably regret it after Saturday’s game but it’s all wonderful fun and that is a good trade off.
I’m viewing the resent events with mixed feelings. I have liked the idea of not having to take as much of the chemo poison every week, but I like not aching even more. So, we adjust. I guess I won’t be finding my hair growing back any time soon. So, I keep a few bobby pins so I can use them (one at at time) to hold my thimble sized bun… and my BUffs… and I keep thinking… and keep dealing with the brain fog/chemo brain.
The adventure… continues…
SO…. I’ve got RA and Sjogrens and Raynauds. They kind of all play off on each other. RA is primary, the other two kind of are just co-existing conditions. These kind of affect me to one degree or another pretty much every day.
My RA is pretty much currently controlled. Yeah,I’m on an obscenely expensive cocktail of meds, and I get tummy shots every week but it is a pretty decent trade off at the moment. It means I’m in reasonably good shape for the most part and I can hide my rather thin hair with my rockin cool Buffs. Can’t hide the chemo brain so much, but I’m trying to determine the best way to get around that.
OH… and something weirdly new… since my hysterectomy… I’m having hot flashes… which is wicked cool because my feet are freezing (Raynaud’s) and I’m trying to figure out to keep my tootsies warm while mitigating the hot flashes. In the next couple months that should start to take care of itself. I’m not supposed to take hormone replacement because it can lead to an increased chance of cancer in a body that is already having an increased chance of cancer (thank you RA) so I think I will keep on taking methotrexate to keep that at bay too… I look like a real goofball walking around in shorts and a tank top and fuzzy warm socks. I’m SO glad I’ve never cared a whole lot about fashion… I’m a honey badger!
This week I had my annual eye exam with my Ophthalmologist. I always kind of view this with mixed feelings. He’s… eccentric. It’s late summer and he always whistles Christmas songs. He has an incredibly interesting sense of humor. He also tells me the ongoing saga of my EBMD. Epithelial basement membrane dystrophy (EBMD) is this weird ass condition where the cells of your eye get all loose and weird and can stick to your eyelids in the morning when you wake up, your eyes can hurt a lot, you can get way blurry vision…. blah blah blah.
This medical explanation is pretty good if a little… medical…
It is exacerbated by dry eyes… so, while it may have existed independent of my RA… it never showed up until… oh… about 3 months before my advanced case of RA was diagnosed. Coincidence? Yeah, probably not.
I’ve been kind of trying to dig, but I can’t seem to find anywhere that links or discounts the link between the two even as kind of… well maybe that would make it worse… kind of thing. One website shows that EBMD might help to diagnose Sjogren’s … so maybe…
So… I’ve been on Restasis for a couple years. Apparently it isn’t helping a whole lot. I’m not getting another prescription for that… now… it is a matter of just keeping my eyes as wet as I can. Tear replacement drops (over the counter) and something that isn’t quite over the counter but what they are telling me is BEHIND the counter (kind of like cold medicine and cigarettes… hmmm) called FreshKote… Three times a day to try to rebuild my tears. They kind of burn a little, I hope that means they are working… I’m glad that the pharmacy put the prescription through as a real prescription, because it looks like my insurance is going to cover it… which is good because $40 a pop for eye drops makes my brain hurt… but… whatever it takes to keep on keeping on, I guess.
Oh… and in about 2 weeks, I can pick up my shiny new glasses… Squirrel Girl has given them her stamp of approval… so… 😉 maybe they will be an improvement.
I’ve been cleaning. I’m not quite half way done with the task and I’ve been at it all weekend… but it has been an almost fun adventure. The cleaning has been interspersed with preparations for the upcoming school year (tomorrow … 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
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