Tag Archives: RA

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Guilt and Exhaustion

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I’m currently running on 6 plus weeks since my last orencia infusion.  I’m recalling how much it sucked to be eight weeks without it.  Last night it hit me hard what this time it is feeling like.  I had to … Continue reading

The Reaction

I know I’m guilty of it too, so let me start out by saying that I think this is just human nature and it doesn’t mean what it feels like it means when you are on the receiving end.

People hear (read, whatever) a comment you make about… seeing a Rheumatologist… or taking Methotrexate… or… whatever… and suddenly they get “that look” and they make “that comment”… oh, I hope you don’t have Rheumatoid Arthritis.

Of all the things I could have, I have to admit, RA wasn’t at the top of my list.  I probably would have picked something that sounded sexier, or that more people understood or could relate to, or that wouldn’t ever change the angles at which my fingers or toes pointed.  But I didn’t actually get a vote.  And frankly I don’t think I suck that bad at carrying on my life.  It could have been better, but it could have been worse.

I understand that people feel empatheticly bad that I have a forever condition that frequently hurts and that sometimes can knock the shit out of me and that might shorten my life and that (outside chance) could wind me up on disability some day.

It does suck that it hurts.  It way sucks that it makes me tired a lot.  Combine those two and it makes some days be way cranky days.

But don’t for one minute forget the fact that I do not let it get in my way.  When I’m not controlled, it has a huge impact on every day.  But I’m back to being controlled.  I’m back to taking Yoga (and starting to train for next year’s big races) and thinking about smaller races later this year.  I’m enjoying yard work (WITH my work gloves on, thank you very much).  I am back to writing for a contract.  I’m back to living my life.  Yeah, I have to be mindful and not stress too much and not work too much and to take time for myself, but I’m back to being me.

And today, I’m working from home (too many hours, I know… and I’m on pager duty so have to be “on line” till 8pm) with the windows wide open.  The birds are singing and the breeze is making my dozen or so wind chimes dance.  For a while, I worked from the front porch.

I was reminded this week that, there but for the grace of god go I by a friend I used to work with.  She is considering, very seriously planning on, applying to go on disability.  She is Sero-negative RA and has been fighting for a diagnosis for two or more years.  I understand why she would be thinking this way.  There are days that I am terrified of getting to that point.  So I fight.  I fight every day to stay ahead of my condition.  And I write, so other people know that they aren’t alone.  And I reach out to educate people, so maybe for some people, “the reaction” is more… Oh… that sucks… I’m sorry… Come on, let’s go have a cup of coffee (tea, ice tea, banana split…whatever).

it could be better.  But it could be worse.  Be gentle with yourself.  Know that there are thousands and thousands of us out here who have heard those words and we are more than willing to help you on your journey

Long Hard Month

So… we are in the new house and it is starting to feel like home.  I still have a good bit of cleaning to do, but it is feeling much more like we live here and not we have a maze of boxes.  The new job is incredible!  I’m having fun and learning and I’m being a productive part of the team.  It makes me smile.  I don’t always look forward to the drive in right now, but that is because the roads are sometimes kind of iffy not because of the job.

I realized it had been a month since I posted.  Yesterday I was way busy with trying to get boxes unpacked and put away… so another day passed with no posting.  But here I am.  Alone in the dark, realizing how much my RA took a toll on me for the past month.

I don’t EVER want to go over two months without my meds again.  I got my infusion on Thursday last week and it was almost 9 weeks between.  Not good.  Way not good.  The last couple weeks it was all I could do to get up on the morning and get to feeling human.  I was running on prednisone (not a good thing) and determination.  By the time I got home from work every night all I wanted to do was take napproxin and sleep.

I was tired, short tempered, and I hurt.  The day before my infusion hurt so badly that my fingers wouldn’t work when I told them to and my knee wouldn’t bear my weight for long (and my weight is starting to come down slowly!).

I’m glad I spent an hour on the phone with the insurance company.  Goodness only knows how long I would have had to wait if I hadn’t pitched a fit.

But the infusion was Thursday.  The infusion center at Cleveland Clinic is incredible.  They give you graham crackers and juice and a TV and a blanket and you can have company while you are having your infusion.  For me, given it is 30 or so minutes, the visitor part was kind of nice to have but not as important as if I had been one of the longer infusions.

The infusionists use a neat light to find the good veins to hit and it went really well.  I still miss Keoto, but I think I will be able to do this.  In July I will be able to start getting my infusions in my town rather than having to go clear into Cleveland to get them.  I will probably try to do a work from home thing those days and save some time.  It’s way better to have to drive 2 miles to the clinic and back than to take thirty minutes by bus or car and have to pay for parking.  I’m starting to really like the city but I’m starting to really dislike parking again.  Eh, it all comes out in the wash, I know. but if I can avoid the extra hassle I think it would be awesome.

And here I sit, alone in the darkness, my creatures at my feet… coffee and a shawl… missing my left behind son… and contemplating getting around to do my daughter’s hair (the thought of that doesn’t make me wince this morning either!) and getting my butt ready for work.

 

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.

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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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

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.

In The Midst of the Holidays

The holiday season is upon us (ALL the holidays… Hannachua, Christmas, KWanza, New Years, Winter Solstice… lots of them) and RA doesn’t discriminate based on what hoiday you celebrate.  Probably not an incredibly popular centiment, but you know what… I’m so totally passed being worried about people getting bent with me.
I sit and think about all of the Christmas’s past and all of the Type A memories I tried to make for my kids.  For years I made batches of cookies that no one ate but that I made becuase that is what I grew up with… making cookies.  I hustled and bustled and busted my behind.  And I made memories.  But the memories I made didn’t actually corespond with what I thought I was making.  The memories… Sitting in the chairs of the laser light show and watching the “jello” dance across the ceiling.  Putting up the Christmas tree and letting the kids decorate the bottom.  Dominick the Donkey and I Want a Hippopotomos for Christmas and Santa Baby bringing smiles because of their connotation.  And going to see the Christmas Lights regardless of where we are.  You don’t necessarily have to “do” to create the memories, you have to be.
Now that I’m celbrating with the addition of RA, I rethink what I do and what I plan to do so I don’t turn Ho Ho Ho into HoHumBug.
I know i can’t “do” traditional eggnog or a hot toddy or even spiced wine.  Meds and alcohol don’t really go together well.  It’s not that I have done any of this anyway, I know I’m a cheap drunk and it isn’t good for me to drink on a good day.  But I also know that a lot of people who are on similar meds do or have.  There are ways to celebrate in less alcohol rich ways.  Apple cider is wonderful, spiced grape juice is an awful lot like spiced wine and is <ghasp> healthy.  Look for the little things.  Look for ways that you can find your own bright spots.  Music sometimes help, too.  All things considered, finding the bright spots are going to be the best treat you can give yourself.
I know that it is especially hard, particularly when many of our families themselves don’t “get it”, but try to set expectations realistically.  You know how much you “need” to get done, be it wrapping, or baking or decorating or cards or whatever.  Be realistic with yourself and with everyone else. And don’t discount hiring out some of the things you feel you have to do.  Buy your cookies from a bakery or from some orgaization having fund raiser bake sale.  Have your gifts wrapped the same way (lots of stores hae charities who come in and do wrapping for a donation).  This has the side benefit of having a bunch of different wrapping paper that no one has seen before (hint hint, wink wink).  There is a big trade off between time(stress… effort) and money.  Even today when money is more tight than ever, sometimes spending a few dollars that you might be able to write off as donation to charity to keep from overtaxing yourself is the better option.  Save your engergy and effort for things that you really enjoy or that bring you happiness.
Find the easiest way to do whatever it is that you are goin to do.  I know this sounds obvious, but it is sanity.  ANd not just during the season, all the time.  A lot of getting by is just learning new ways of doing things.
Ask for help.  When you can’t figure out a way to do something without hurting, ask for help.  This was the biggest deal for me.  I have always been the one to try hard to do things for everyone else.  I’m not sure if that is a girl thing, or a mommy thing, or what.  It is what it is.
Keep in mind, though, that there are also tradeoffs for cutting back, especially if you cut back too far.  When you cut back (or out) on things that really matter to you, or that really matter to those who are important to you, sometimes th cost is your depression or even more stress than actually going through with whatever it is that you cut back on.  Those tradeoffs aren’t worth it.  Sometimes, in those cases, it is better to cut something else out or at least cut back on and find a way to deal with the added stress that the events or the tasks might cause.
So… I guess it all boils down to… do what makes you happy and enjoy the holidays!!!

On Getting a Rheumatologist

I’ve been reading some posts on my RA discussion groups 0n facebook about people trying to decide if they should get a rheumatologist or stick with ‘just’ their regular doctor.  I know that it is a personal decision coupled with the decision your insurance company tends to… um… encourage you to do.

I was lucky.  My PCP encouraged me to go to a good Rheumy.  I have a hunch, now, that she just really didn’t want to deal with me and the obvious problems that putting off going to the doctor about my symptoms for SO long was causing.  But I know that it was also the best thing she could do for me.  Dr Holly suggested a couple doctors, one that they tend to try to send people to and another one if the suggested one didn’t suit… I called Dr Booth and I’m so glad I did.

Having a Rheumy on your team gives you someone who really understands your condition, they understand what your body is going through and they have the background to tell you that this doesn’t work or that might help or don’t listen to the people who preach something else.

She talks to me at every appointment about what she sees in me, what I’ve been going through, what I’ve been up to, what the meds are doing to my body.  She tells me about the up and coming stuff in the ‘industry’ and what new marvelous drugs are being tested.  I don’t qualify for a clinical trial.  I don’t have enough joints involved.  But it is good to have that information.

The rheumy has the inside scoop on support groups and on exercises that you should maybe avoid given your current condition.

and they can answer all of the questions that you run into… questions that your PCP might know, or might have to research and get back to you on…

things like…. methotrexate if taken the way they used to prescribe it (a bolus dose rather than ramping up) you get horrible diarrhea … explosively… and that isn’t great and sometimes it is better to take things prudently rather than the way it has always been.
things like, be gentle with yourself, you will hurt, you will be tired, you will have horrible days and you will have less horrible days.  do what you have to do to get life done.  Slow down and love your good days, adapt tools when you can’t love your days, and don’t be afraid to ask for help.

So… if you have the choice… I would say… get a rheumy, even if only for a while.  They are vastly knowledgeable about what your body is going through and can be one of your best tools in the world.

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Rain… YAY… Oy Vei

Woke up this morning to the wonderful music of rain on the side of the house.  It had been so long (months) since we had any really appreciable rain and we have needed it so desperately.  We currently are looking … Continue reading