Being me really pisses me off

I’m going to tell you the truth: I am really pissed off.

I am pissed that my body hates me, that I can no longer eat sweets, or fries, or bread, that I can’t control the tremors in my hands, that my mind doesn’t work the way it should anymore.  I am pissed that I am no longer the person I used to be, that my looming unemployment is doubling frightening because I have so many limitations, that no matter what I can’t seem to get all of my illnesses in check at the same time.

I am just pissed.  And there’s nothing I can do about it any of it. I know I need to accept who I am and find a way to see the good in myself and my life.  But what I really want to do is throw an epic temper tantrum and then hide in my bed under the covers.

Today I just don’t know how to pretend to be “normal” because today I want to answer honestly when someone asks how I am.  I want to spew the truth and tell everyone what is like to live with a chronic illness (or three, in my case) that controls your life.

But I can’t. I know I have to function, I have to say “I’m fine,” I have to find a way to make peace with myself.  But wow, I am pissed today.

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So Very Tired

I am so tired.

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.

And I’m Back

 

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!

 

 

One Step Forward, Two Steps Back

Even though I know that life with chronic illness is a series of ups and downs, a whole lot of trial and error.  I know this.  But, I let myself lose sight of this as a process.

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.

Keep On, Keepin’ On

I had a rheumy appointment yesterday, a simple follow-up appointment.  I guess I’ll be having lots of those from here on out.

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!

World Autoimmune Arthritis Day

Tomorrow is World Autoimmune Arthritis Day!  For anyone who doesn’t know about it, there is a virtual conference this weekend hosted by a whole bunch of autoimmune arthritis peeps.  Here’s the link: http://worldautoimmunearthritisday.org/event/

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!

One Size Does Not Fit All

I sort of want to whine about post-MTX day misery and having a cold on top of it, but I’ve decided to spare everyone that fun.  Instead, I’m going to rant on another topic.

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?

 

R.A. on the Web

I’m going to take a break from my ranting today to share a couple of links I found yesterday.  The first I came across while I was reading my Zite feed last night.  (I really like Zite and totally recommend it to Ipad users.  You can customize your interests to get articles on things you care about.  Arthritis, for example, which is how this article popped up.)

Top Ten Online Influencers- Rheumatoid Arthritis.

Sharecare.com (which I hadn’t heard of til last night) put together a top ten list of online “influencers” in the world of RA.  Top of the list is Kelly Young, of RA Warrior, a choice I totally agree with.  She is probably the most influential online presence in the world of RA.  I am not sure if I agree or not with the rest of the list, but I understand why they chose who they did.  For the most part the list is actually not people, but websites, that are not even specific to RA.  But…I did find a few new blogs that might be interesting.   Check it out, see what you think.  Let me know if you agree/disagree!

On a side-note, the fact that a chunk of the list isn’t even RA specific, made me realize how hard it is to find actual good RA specific resources out there.  I mean, yes, there are lots of articles on webmd and medpage.  And yes, most of the health message boards have discussion boards for RA, but there are not a lot of good resources.  If I remember and have the energy, I’m going to start trying to compile more  here on my blog for easy use (by me and you!).

Sadly, there are even fewer fibro resources than RA ones.  I am actually pretty disappointed by how little information there is on the supposed fibro organization websites that give you little info for free.  I would like to see something like the arthritis foundation except for fibromyalgia.  But that’s just me.

Back to last night.  I decided to subscribe to Everyday with Rachel Ray (because I love Rachel Ray!  Also I love paper magazines, which is weird, because I do almost all other reading on either my ipad or my kindle), so I was on her website and came across this:

Hero Foods

Rachel’s got a link on her main page to this (RA mentioned on her website- yay!).  Anyway, Seamus Mullen is a chef in NYC who also happens to have RA and he wrote a book called Hero Foods, which is, I guess, about foods that are good for you/make you feel better.  There are a few recipes and a list of a few of those hero foods on the website.  For the most part the foods were berries and greens, and none of the recipes looked remotely appealing to me.  There is a short “What is RA?” section that does very little in the way of explaining RA and (in my opinion) also seems to simplify the treatment of RA with his eating right makes me feel better focus.  I am not disputing that eating right makes him feel better, and that eating right is very important.  It is. But I really do not believe that what we eat is the only factor in how we feel.  I don’t believe food is the answer to RA problems.  I do know specific diets have helped some with RA and other autoimmune diseases; I believe that.  But I don’t think specific diets can cure all of us.  So, I guess I am a bit disappointed by this gloss over approach here.  But…it’s a food related website, so maybe I’m being over-sensitive.  It looks like there is going to be more added, so I’ll keep an eye on it.  Maybe they will actually do RA right with good information.  I hope so.

If I run across any more good (or bad) websites for either RA or fibro, I’ll be sure to share them.  I know not everyone is like me and wants to read every single thing possible about this stuff, but, I’ll share them, just in case.  🙂

 

Good Days and Bad Days

We have good days and bad days.  All of us.  I didn’t think much of them when I was well.  It simply was either a good or bad day, and I knew the bad days would pass and I would have a better day tomorrow or maybe the next day.

It’s all different now.

When you have a chronic illness, the bad days are the norm.  There are, of course, levels of badness.  There are the normal bad days that pass as average to us.  There are the really bad days which mean we have to stay in bed all day.  But, honestly, most days are some level of bad.  Sure, they aren’t all miserable and horrible.  They are just days when our bodies hurt.  When our functioning is compromised by pain or disability.

Yesterday, I had a good day.

It was maybe my first really good day since I started getting sick.  It was a damned good day.  I had very little pain.  I was high-functioning.  I was able to do things like clean out my closet, go through old clothes and sort out for Goodwill, take care of general household chores.  I was able to do things.

It was pretty great, honestly.  I had to try to pace myself but it was hard not to try to cram everything into that good day.  After all, I don’t get many so I figured I should take advantage.  By the end of the day I was tired, worn out, achy.  But no pain pills yesterday, so that was pretty great, too.

Today, I woke up and I didn’t feel too bad.  I thought- hey, cool, maybe another good day.  And then I got out of bed and could barely walk.

Today, I am having a bad day.

And it sucks, after having experienced a good day yesterday.  It sucks.  But at least now I know a good day is possible.  I know it might happen again.  So, today, the thing that can get me through the bad day, is that the little possibility; what has to get me through all of this is hope.

When Physical Therapy Isn’t Therapeutic

It is safe to say that my physical therapy office is not going to be on my team.

I liked my original physical therapist (K) at my first visit.  She seemed helpful, interested in my well-being, ready to help me gain some strength and eliminate some of my pain.  I was pretty optimistic after that first visit, honestly. Which is maybe why I’m bummed now.

At second visit, I liked K a bit less.  She spent most of her time we were together doing paperwork while I was on the tens unit or on the recumbent elliptical (which is a good machine for people like me).  But we did a few strengthening exercises and she sent me home with homework (three of the exercises twice a day ten times each).

So, today, third visit, I am not having a good day, pain-wise.  I didn’t want to go.  Couldn’t find convenient parking.  Walk in and K says, “I can’t see you today, so A will see you.”  Fine.

But A doesn’t know anything about me.  First few minutes of session is her asking me questions I answered on first visit.  Ok, fine.  I can deal with that, I guess.  She puts me on a bike-type machine which was much less friendly to my joints.  Fine. I can deal, I guess.

But here’s where I start to get pissed.  She says “So K went over bio-mechanics with you last time, right?”  Me: “What do you mean?”  A: “Like the right way to stand, the best way to sleep, ways to get up.”  Me: “No.  But I would really like to know those things.”

Evidently K’s notes indicated we covered those things.  We didn’t.  I went to physical therapy partly for that information, and I am so upset that my care is being compromised because K was lazy and took the easy way out by writing that she had covered something she hadn’t.   Lucky for me, A did go over some of those things (unfortunately no new information).  A also add some abdominal exercises to my routine, which I am happy about.

But then at the end, I am confused again.  She recommended I do my exercises “Maybe every other day.”  K told me twice a day.  Which is it?

Physical therapy’s purpose is to help me, right?  But how is helping to get inconsistent care?  To get inconsistent information?  To get therapist’s who don’t actually give a shit about my outcomes?

Arg.

I have three sessions left that my insurance will cover.  After that, I guess I need to consider whether I can afford to pay for my own physical therapy at a decent therapist.

Arg again!