I keep saying that to people. At work, at home, at the doctor’s office. I can’t even help myself from saying it sometimes.  But here’s the thing I know, and maybe it’s why I keep saying it: I know that none of these people really understand what I mean.

I remember, vaguely, back in my healthy days how it felt to be tired. Sometimes I’d even be exhausted. I have kids, after all, so there were sleepless nights and long days. So sure I was tired.

It’s not the same now, and I wish there were a better word for this kind of fatigue.  When I say I am tired now it means that I wake up exhausted.  I can sleep for eight hours straight and wake up and feel like I haven’t slept at all.  It means that my body feels like it is carrying around a whole extra person, because my body just feels that heavy, that over-extended.  It means that thinking about my day makes me want to cry because I can’t figure out how I am actually going to get things done.

I am tired to my core.  And I don’t know what to do to get through this.

I guess I should back up to say that I’m in a flare, and have been since January when I caught a cold.  The cold passed, but here I am, swollen and tired and in pain.  About a week and a half ago, I finally emailed Dr. K and asked what she thought I should do.  She said I was probably still bouncing back from the cold (she said something I had never heard before, that it can take us 4-6 weeks to recover from even minor viruses- crazy!) and that I should try increasing my prednisone for 10 days and then we would see where things were. I really thought that was going to fix things.

I called to make a follow-up appointment on day 7 because I still felt awful.  Pain and fatigue hadn’t really improved, despite the extra prednisone.  I went to see her yesterday, and she said, yes it looks like something is going on.  She ordered labs, and pending results, I will likely be increasing the MTX and switching to injectables because there’s no way my stomach would be able to handle the max dose.

Hearing all that just made me more tired.  It will be weeks before an increased dose kicks in and makes a difference. During those weeks I have to stay at the higher prednisone dosage.  It took me months to get myself down to 6 mg and now I’m back to 15. Yeah, I know it could be worse, but I wanted off of it. I feel like that will never, ever happen. My last visit with her I was feeling so much better that we were talking about what we could do once I got off the prednisone. We were talking about lowering the MTX, or getting off the naproxen.  We were talking about progress.

But no. Here we are again. Going the opposite direction.  And I am so very tired, so very discouraged.  And I know that I need to say to my work, to my family, to everyone- I need a break. I need to rest.  But I just can’t. There’s no time to do that, no way to do that now. I have to keep going to work, and keep plodding along, and trying to not be the worst parent in the world, and I just don’t know what to do.

In my head, I know that I have been here before. I know that things will get better and that this is the way of chronic disease. There are ups and downs.  I know all of that, but today, and all the days lately, I feel defeated by this disease.

And I’m just tired.

Last night it snowed, our first actual snow (snow less than inch isn’t actual snow when you live in Wisconsin).  We have a couple of inches on the ground, very cold temperatures.  And my body just….hurts.  L asked me if my joints were hurting and I answered that my hips hurt, and my back hurts, and my hands hurt.  Then I stopped and said, “So, yes, my joints hurt.”  It took me actually adding up all the pains to put it together in my head that yes, I am having a very bad day.  In the back of my head, a little voice is saying “Be prepared for a flare.”  I have been so lucky this winter, these last several months actually, to have been getting progressively better, to be responding to treatment.  I have been so lucky, and I have known it.  So now on this bad day, I am scared.  Could this be more than one bad day?  That’s one of the many things I hate about chronic illness- the fear.

So today, I gave into feeling crappy and didn’t go into work.  I am alternating walking around my house and wrapping myself in heat through my heating pad and my heated throw blanket.  I am drinking lots of water.  I am trying not to feel stress. I am stretching, as my physical therapist has shown me.  I am trying to do all the things I can do to stop the bad day in its tracks.  But none of that prevents the fear when I look down at my hands and see the red joints, which has been gone so long I had forgotten their ugliness.

F’ing winter.  I can’t wait for spring.

But really, I’m hanging in there.  The Enbrel/MTX/plaquenil combo seems to be just what I needed.  I am down to 7 mg a day of prednisone (woo!).  This Saturday I am going down to 6mg.  Except for withdrawal symptoms, I haven’t had much problem going down on it, in terms of joint pain.  So that’s been pretty amazing.   The fibro pain is still pretty icky, but I am not sure what to do about that.  We’re at the top of the dosage for lyrica.  Dr. K thinks I just need to get more active.  So..I’m trying. I’m trying to walk more.   Started physical therapy again for my back, which seems like it’ll be good, too.  I have a great physical therapist, and I already feel like it’s been worth going, after one session.

So, back to walking.  I’ve discovered this really interesting thing (interesting to me anyway!).  A couple of months ago I got a pedometer so I can see how many steps I take a day, and I pay close attention to the number of steps and how I am feeling.  I have found a direct correlation between how I feel and how much I walk.  In fact, I now know that if I take under a certain number of steps, I am going to feel crappy the next day.  So I have a baseline now for how active I have to be, which has been really helpful. And it’s also been great to feel like I have control over one thing that can make me feel better.

The trick has been that I live in Wisconsin and it’s cold outside!  So getting enough steps takes some creativity, lots of pacing around my house.  Lots of short walks with the dog.  I am toying with getting an elliptical machine so I want to have to go outside but I can still be active.  Anyone have suggestions?

Next week I see Dr. K again.  And then we’ll see where things stand, I guess.  Hoping you are all hanging in there, too!

I haven’t blogged in so long.  I wish I had a good reason.  Mostly, I have just been busy.  I went back to work part time, and balancing work and home has been tricky.  I had a brief period of feeling a lot better, so I tried not to think about being sick during that time.  And then, the rest of the time, I guess I have still been trying not to think about being sick.  It depresses me.

But I guess that’s the way it goes.

So, an update: I have been completely unable to get off of prednisone. I actually haven’t been able to get below 10mg a day, which is pretty scary.  So, several weeks ago we added plaquenil to the mix.  Then we did my labs to check on where I am with things, and my inflammation numbers were still really high.  My pain was pretty high too again.  So, I went to the doctor about a week and a half ago, and we discussed options.  Dr. K recommended we add Enbrel once a week, and hopefully it will work well enough that I can get off the prednisone.  Here’s hoping.

I don’t know what else to say, honestly.  I am trying to be “normal.” I am trying to do chores, and go to work, and enjoy my family.  I am trying not to let pain consume things, but there are days I feel so completely defeated by pain, by the idea of pain, by the prospect of my life being this way.  I feel….tired.  It’s so hard to think about, and it’s so hard not to get discouraged by your body when your body doesn’t like you.

But, I am hoping the Enbrel is the fix.  Or at least helps enough to make it easier to be normal.  We shall see!  I will try to be better at updating here.  I’ll try not to hide away too much, from myself or from you all!

The last couple of weeks, I had been feeling a lot better.  I was able to walk more, to use my body more.  I started cleaning around the house (the kind of cleaning that ends with big garbage bags of unneeded stuff).  I felt good.  Not great, not pain free, but I felt decently good.

Last Saturday I started my prednisone taper, with the help of my acupuncturist.  The first day was awful- I was nauseous, achy, miserable.  But after the first day, things started to be ok, and by mid-week, my taper withdrawal effects seemed to be pretty much over.  I was psyched.  I started wondering if I could actually move down to the next level (5 mg) sooner than next month.

And then the pain and swelling started.  First in my hands, which were stiffer than they had been.  Then, I noticed my feet were swollen. But hey- I can handle a bit of swelling.  No problem.

Then yesterday, the horrible pain started.  My shoulders and elbows hurt when I moved (though acupuncture helped those); my hips hurt when I walked.  There’s a stabbing pain in my foot.  This is a problem.

Because I know that swelling in my joints means that things are not where they need to be, means that there may be permanent joint damage in the works, I reluctantly emailed my doctor.  I told her about the pain and swelling, that even though I know some of it is related to pms, there is more pain and swelling than there should be; I also added that I really want off the prednisone.  Is there something else we can do, I asked?

Her answer: increase the prednisone back to the 15 mg until my pms pain is over.  And increase the MTX, from 15 to 20 mg a week.

I know this is all a process.  I know that this is normal.  But I can’t help but feel like I went backwards. Taking the extra prednisone this morning, I am just so discouraged.  At the same time, I am willing to risk the moon face and weight gain, if it means being able to function again.

So I guess we’ll see.  I’ll wait a bit and then try to taper again.  I’ll hope for the best with the MTX dosage increase (please, don’t let the nausea also increase!).  We’ll see where it goes, and hope that we keep moving forward.

At first, I was undecided.  It didn’t do much for me the first few sessions.  It was awkward, finding the perfect chair, adjusting to being in a room with other people who are asleep or zoning out.  (I go to a community acupuncture clinic- for more info, click here)  I didn’t totally believe that putting needles in me at weird places would help me with anything.  I had actually started thinking I might quit.

Then, Linda found a good treatment for me (the ouchie one, as she calls it), and it’s really helped with my pain levels.  This past week I have had a cold and allergies on top of it, but acupuncture has helped so much.  It actually blows me away how much the acupuncture helped my symptoms.  Without cold medicines or anything else.  Just some needles.

So, I’m a convert.

Besides the obvious plus side of these good results, there are other aspects of acupuncture that I have to come to really like. Having someone pay attention to me, even for those few minutes it takes to get the needles in, is comforting somehow; Linda pays attention to where my pain is, what my symptoms are, what I need at each session, and she tailors the treatment accordingly.  I like that.  I have also gotten to a good place mentally when I am there.  It’s like my brain now knows: this is quiet time.  I zone out, doze a little (unheard of for me, lately).  I relax.

On top of that, there’s a positive vibe there.  I am not sure I have ever been one to think about positive or negative energy.  I have never believed in that kind of thing, particularly.  But I think I get it now because there’s a positive energy that comes from Linda, but also comes from the entire experience.  I feel good when I am there.

All in all, I’m so happy L. talked me into going.

On a somewhat side-note, I talked to Linda today about whether there’s a treatment she can do to help with the prednisone taper that is coming up (will start the taper down on Saturday- dreading it).  She is going to try the NADA treatment, which is essentially, standard acupuncture treatment for drug and alcohol addiction recovery.  So….should be interesting.  Will keep everyone up to date on that because I know getting off prednisone is a big problem for many of us with autoimmune diseases.

Anyway, things looked okay.  No weight gain from the prednisone (yay!), blood pressure holding steady.  The “squeeze” test showed a lot less pain in my hands, which was great.  Still some pain in my feet and my arms during the test, but overall much improved. So the basic message from Dr. K was to keep doing what we’re doing.

A couple of things stood out for me during out visit.  First, I have to start weaning off the prednisone.  Which is good.  But also bad.  It’s going to suck, and I know it’s going to suck, so I don’t want to do it.  At the same time, I would love to be off of it.  So after my next MTX dose, I am going to go down to a lower dose.  Fun!

I find Dr. K’s approach to things  really interesting.  She phrases things like this “you can lower your dose.”  Not “you should” but “you can”.  My partner says it’s because she wants the patient to be part of the treatment, and I think he’s right.  Ultimately when I lower my prednisone is up to me, in Dr. K’s mind.  I like that, knowing that I have some choices.  At the same time, I would love there to be one right way to do things, one perfect path that will make me feel better.  I guess that’s the difference between treating curable illnesses and chronic (incurable) ones.

The other big stand out with Dr. K was a conversation we had about managing multiple diseases.  Our big challenge, she said, would to be to make sure that we are treating each disease correctly, to make sure that we can identify what is causing each kind of pain.  So when I go down on the prednisone, an increase in back pain is not reason to put the dosage back up, nor will my back pain improve with the MTX.  It’s a separate entity.  I knew already that this was a challenge, and that it was important for me to pay attention to my body so I can decipher what is really flaring up or improving, but it was nice to know that she’s paying attention to this.  It’s almost as if she is treating me as three separate, but entwined patients, in order to find the right level of treatment for each problem.

So for now, I am going to keep on, keepin’ on.  And maybe we’ll get somewhere on this path!

After I wrote this, I started thinking about all the other lies we tell ourselves.  Oh, not just as sick people. Everyone does it.  Things like: My job will get better if I am patient or This dress makes me look thin or He hasn’t called in a week but that doesn’t mean he isn’t interested.

We all do it.  It’s how we cope with life, how we go through the day to day.  Sometimes those lies turn into full-out dangerous denial (he hit me because he loves me too much), but for the most part it’s normal.

We (sick people) do this, too.  We convince ourselves of positive outcomes because how else can you go through each day in terrible pain.  We tell ourselves things like:

Tomorrow I will feel better.

This medicine won’t have any side effects.

My doctor knows best.

Those could all be true, of course.  But we have bigger lies we tell ourselves:

I am not missing anything by not being able to go out with my friends

Moon face is actually flattering on me.

It’s my fault I’m sick (if you are telling yourself this one- CUT IT OUT! And yes we all do it)

Today my lies are all about vanity.  I hate to buy a bigger sun hat today because the first one I bought (that did look not terrible on me) didn’t shade my face enough.  I don’t have lupie sun sensitive (thankfully!  sorry to those of you who do!), but I am on several meds that will make me photo-sensitive so I am being cautious.  Anyway, I bought a bigger hat today and I completely trusted my style-deficient partner to tell me which looked best on me.  I looked in no mirrors.  All very dumb.  But I bought it anyway, and now I’m going to tell myself I look fantastic.  Because that’s what I need to believe.

I also need to believe that those gray hairs I have spotted lately are the ones falling out in bunches everyday.  That lie kills two birds.  Look how efficient I am.

So, what lies do you tell yourselves to get through the day?

I found several interesting articles already and there are going to be a bunch of presentations as well.  From what I understand most of the presentations will be accessible for a couple of days so you don’t have to watch them at their original air time.

Why is World Autoimmune Arthritis Day important?  Awareness.  Do most people even know what autoimmune arthritis means?  (It’s a  term that encompasses a bunch of different diseases- lupus, RA, spondylitis, and a bunch more. )  I’m excited about the conference because it is bringing together a bunch of information from a variety of sources and putting it in one easy to access place.  I love being able to find information easily and the amount of time I spend researching is a bit crazy.

Anyway, that’s it for today.  Unless I am going to whine about having a cold and not being able to sleep.  Or about my hair falling out.  Or about the new swelling in my ankle.  Or… well, that’s it for today.  Hope everyone has a good weekend!

I posted the top ten influencers the other day, and I made sure to check out all the sites I hadn’t yet.  Some of them will be good ones to follow, I think.  Anyway, on one (http://midatlanticarthritis.wordpress.com/) she had made a list of some good books to read, related to RA.  I am always on the look out for good reads, so I put them on my to-do list.  Yesterday, sick in bed post-MTX, I decided to read Take Me Home from the Oscars by Christine Schwab.

I get why people like the book; it was an interesting read, especially with all the behind the scenes “stuff” about the entertainment industry.  But I’ve got to be honest.  Until that last chapter, she was not the arthritis advocate that people are saying she is now.  Oh, I know she’s turned around and started publicly advocating for the Arthritis Foundation and that’s great.  But I really, really hope that NO ONE looks at the first however many chapters of her book as an example for how to live with arthritis.  She was so focused on perfection, of hiding her disease, that in a lot of cases she did not take care of herself.  AT ALL.  That should not be the lesson we give the newly diagnosed: go about your life, popping pain pills and using prednisone as a fix it drug, and make the best of it.  We should not be telling people with RA that they are expected to be able to continue their pre-disease life without anyone knowing they are sick.

I wish somewhere in her book she had explicitly told her readers that following her example would be a bad idea, that pretending you are not sick is a bad idea, that using prednisone like a fix-it drug is a bad idea (she does talk about that a bit, but not to the degree I would have liked).  I wish that she had told people that it is okay if you can’t be who you were before you are sick.  She spends the whole book saying it was not okay for her to be anything less than perfect, and I get that feeling.  I get why she felt that way.  But even in the last chapter she does not give her readers permission to be different, to be sick.

And yes, I know she didn’t write a self-help book, but a memoir.  But all I could think through much of the book is that I wanted to smack her for being stupid and short-sighted.  I wanted to smack her for the lessons she’s giving people who don’t know enough about RA to know that she was being stupid and short-sighted.  Healthy people who read the book are going to get the idea that with some pain pills and some steroids, all of us can mostly function in high-pressure jobs with lots of travel and loss of stress.  But this isn’t the case for most of us.  Hell, there are going to be sick people who read the book and feel guilty because they can’t do everything that she was doing.  Or even close to that.

I get why she’s a good voice for RA; I get why the Arthritis Foundation is happy she is advocating for them.  But I just feel like her book should have come with an extra couple of chapters with some good information, with some practical advice for living with RA, with an explanation that not everyone will be able to do the things she did and get away with them, that not everyone will find a miracle drug that puts them into remission for years.  Her story is only her story and for people to look at her story as the shining example for life with RA is bullshit.  And also a total disservice to people with RA.

Ok.  Soapbox over.  Obviously I’m feeling a little sensitive about this.    I have some guilt about all that I can’t do right now, and I guess that’s pretty obvious when I’m ranting about a book!  Anyone else read and have an opinion?