Tag Archives: rheumatoid arthritis

But it’s just arthritis… Yeah… Right…

The “just arthritis” that people talk about when they impart their wisdom on those of us who have courage enough to admit to having RA (or one of the other ‘flavors’ of autoimmune arthritis) is usually osteoarthritis.

The comments are usually something along the lines of…

If you would just lose weight you would probably feel better
Exercise helps everything
Have you tried Gluten Free
Oh, yeah, I have that too in my left knee.  I hate when it rains.
Oh, my grandma had that, but she was fine if she took a couple aspirin
You’ll be fine.  It might hurt but no one ever died from having a little arthritis.

I’m never really sure how to feel about the comments, because I am an odd person who tries hard to believe that most people are well meaning when they make these kinds of comments.  I try to not think they are being deliberately mean or uncaring.  I try to understand that they probably don’t understand.

What bothers me most are the people who, when you try to explain to them that I’m not just fat and lazy, I’ve been tested for gluten sensitivity (and every freaking other thing under the sun) and I’m actually finished three half marathons since my diagnosis.

I know that, after my half marathons,  my body gets a little ticked at me from the stress I put it through.  My joints swell, and I get what feels almost like the flu for two days.  I know people mean well by telling me what is probably wrong with me (and I completely understand that there are SO many things that can be wrong with me), but I know my body.  And I know my doctor.  And I know my test results.

I have shoes in three different sizes.  So I can be decently comfortable no matter how fluffy my feet joints are.  I have wool socks so I can make my feet warm no matter what the weather…. ones for my regular shoes and ones for my Hobbit Feet shoes.

My fingers hurt… in the joints and in the knuckle bumps (hello… knuckle bumps).

My toes hurt.

My ankles hurt and my knees hurt

Not all the time, but usually bilaterally, and when I flare, they swell to nearly twice their normal size.

I have to take infusions every month.  Infusions don’t do anything for “just arthritis  and I certainly wouldn’t spend $2500 a month for something that wasn’t going to be working at all anyway.  And it does (for which I’m very happy).

My hair is thin (I can hold it in an entire hairstyle with one bobbypin) because I’m on chemo drugs and I will be forever.  Chemo drugs do nothing for osteoarthritis.  When I tried by wean off of my chemo drugs, my body got so pissed at me I had to go back to the old dose and add in some extra meds.

I know that I can’t touch elevator buttons, pop cans from a machine, or doorknobs without thinking.

I have to hum happy birthday twice when I wash my hands after I use the bathroom.

I have to carry Clorox wipes with me.

I have to THINK about whether I can deal with buttons and jeans today or if I need to resort to elastic pants and pull over shirts (usually sweats and a t-shirt).

My primary care physician doesn’t even actually bother with diagnosis any more.  If I call with a problem that I’ve had before (and I’ve had many) she just calls in whatever it is I had last if it worked.  I’ve been her patient for nine years.  My record was three inches thick by the time they went full digital.

I think, though, that the bumps are the scariest.  “Just Arthritis” doesn’t come with fancy nodules that grow on your knuckles.  I have them.  I don’t yet have enough joint damage that my fingers lock in any one position or that twist and turn back on themselves.  I can still see the hands of my great great great (something like that) aunt that we used to visit who wasn’t as lucky as I am.

I fight every day to maintain where I am and to scratch a few inches back to where I used to be.

It isn’t the worst think that could happen to me.  I understand that.  But it certainly isn’t “JUST” anything, let alone Just Arthritis.

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But You’re Too Young

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

Why Me

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…

 

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When Someone Else Gets an Autoimmune Disorder

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

Not Quite So Far Into Remission

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…

EBMD One of RA’s extra special gifts

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…

The corneal epithelium produces and adheres to its underlying basement membrane. Corneal abnormalities associated with map-dot-fingerprint dystrophy are the result of a faulty basement membrane, which is thickened, multilaminar, and misdirected into the epithelium. Deeper epithelial cells that normally migrate to the surface can become trapped. Epithelial cells anterior to aberrant basement membrane may have difficulty forming viable hemidesmosomes and basement membrane complexes, which attach to the underlying stroma, resulting in recurrent erosions. Irregular epithelium centrally can cause decreased vision.

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.

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Fear Bites

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

Chemo Brain… the gift that keeps on giving

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.

 

Yoga? Really?

 

 

 

 

 

You’ve heard them.  And you have probably gotten extremely irritated by them. Those ever so well meaning people who tell you that, if you would just exercise more (maybe take up yoga) you would be all better and you wouldn’t have to rely on those silly meds any more.

You know the first thing that goes through your mind.

If I could do yoga, don’t you think I would love to do yoga, but I know how badly my body hurts just getting through my day and trying to stick my left big toe in my right ear while standing on my head is just not happening.

Why exactly do you think that people who weigh over 120 pounds, or who hurt or aren’t limber or who aren’t “perfect” don’t take up yoga?  Any guesses?  Anyone?

Look at the people coming in and out of a Yoga studio.  Look at the pages of Yoga magazines.  You will get a pretty quick idea of why.

I get the Nook version of Yoga Journal and I read it (albeit with a bent to what I can learn not usually because I want to be able to stick my right toe in my left ear while standing on my head.  There are some amazingly well written and insightful articles.

But lately (as I hear more and more people talk about how maybe I could be fixed if I would just <insert quick fix here>) I have been looking as much at the pictures in the magazine to see if I can’t figure out why people I talk to don’t think they can take up Yoga.

OH BOY.  Yeah, I know why no one feels they can.

On this month’s cover…

Blonde with not a hair out of place despite doing poses on a cliff side overlooking the ocean.  Bare midriff.  Tight spandex pants.  She might weigh 125 pounds.  The only thing missing is a bellybutton ring.

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Random pages…

Vintage VW Bug with another 115 pound girl on the roof… in the middle of a field of flowers…

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Two women sitting on a wooden deck, laughing together… neither has an ounce of extra flesh…
There are the women at the south pole (I guess they are at the south pole. they are standing on mats outside in the snow next to a pole and it says the south pole) and the quote in THAT bit says “it lets us take our big boots off, feel our feet, and just stretch”.  The picture is outside in the snow… Funny… Not one of them has their boots off, but they don’t look like they are freezing, either… despite not one of them weighing over 120 pounds and despite the fact that one is doing tree, one is standing on her head, and one is squatting with her butt inches from the snow.  The poses are perfect.
There is the well muscled woman on the side of a granite rock.
OH HEY, a guy.  Also buff and fit.
None are sweaty.  Not one are doing any kind of adaptation of the perfect poses. NONE look like they hurt or are in any way sweaty or un-perfect.

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WOW… I found her!!! The ONLY woman in the last couple issues of the magazine (I haven’t gone any further back but I have a hunch…)  on page NINETY TWO of the magazine, back buried in the “continued on” section near the rest of the adverts… The token woman who weighs at least 150 pounds.  She is doing a way better job at the pose than I could, but at least it isn’t perfect.  She isn’t the stereotypical yogi.  SHE IS ON PAGE NINETY TWO.  And she is in advertisement for a yoga retreat (not ACTUALLY in an article)… but she is there.  Hidden in the back… where you would not likely look if you were flipping through the magazine.

I love the magazine.  I read the articles.  I hate the fact that no one in any of the articles looks ANYTHING like me.

You can do yoga.  Honest.  I started yoga right after my diagnosis to try to stay ahead of the pain and the stiffness.  You can adapt poses and use props to do them.  Some of my favorite parts of yoga are the Pranayamas (like here http://www.abc-of-yoga.com/pranayama/)… breathing… thinking about where stuff hurts, and taking as deep a breath as I can and sending my thoughts and the breath to where the pain and stiffness is.  Some days, this is the only yoga I can do (the poses are just so far beyond where I am that I just can’t).

You CAN do yoga.

You don’t have to be perfect at it.  You don’t have to look like the stereotypical yogis.  You don’t have to wear the “right ” clothes or even do half the poses.  The point is more taking time to meet yourself where you are and change the way you are thinking during that short amount of time.

It isn’t going to “fix” you, but it can help make you more comfortable in your own mind.  It can help with the way you feel about you, if not the way you feel.

Yoga doesn’t have to have anything to do with being perfect, only meeting yourself where you are and meeting your own needs.

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Long Week

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