I’m an Acupuncture Convert

I have decided I like acupuncture.  Quite a lot, actually.

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.

 

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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!

The Lies We Tell Ourselves

I just posted something on facebook that I decided would be a good blog:  “I am going to pretend that all of my hair that is falling out from my MTX is my newly found gray hair. I am also going to pretend that I look good in my new sun hat. Pretending is good.”

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?

 

 

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!

Nothing is at all the same

Today’s blog is going to be random, mostly because I haven’t blogged in two days and I have a whole bunch of little things I want to say.

First up: my hair is starting to fall out.  Thanks, MTX!

This was mother’s day weekend. I dislike mother’s day, partly because of my own  very challenging relationship (or non-relationship) with my mother. I could bore you with all the reasons mother’s day is awkward and not my favorite, but I won’t.  Instead I’ll get to my point (for once!).  My middle child gave me a frame with a poem he wrote at school.  It’s called “My Mother” and I am sure the assignment was to write some poem to honor your mom.  Anyway, his starts with “I don’t see you on weekends or during summer vacations, you are always at work. But I love you anyway.”

Ouch!  (I should point out that I have only started to always be at work the last two years so he had eight years with me being primarily at home, and “always” at work means I am home by six).  Anyway- him saying that reminded me how grateful I have been the last few weeks to have so much extra time with my kids.  I have been home for homework and snack time; I have been around to talk to them about their day.  So, yeah, it’s totally sucked to be sick, but it’s been very nice to be home more.  Going forward I feel like I need to find a healthier balance between work and home.  I don’t want to miss out on all the good stuff with my kids, and I definitely don’t want their memories of me to be as someone who was “always at work.”  Of course, that seems less likely now anyway, with my broken body telling me to chill out.

My other interesting weekend tidbit: I went to the theatre where I work so my daughter could see the children’s theatre performance.  It was a challenge getting there: my partner had to drive us, I had to take pain medication before we left, etc.  When we got there, I was nauseous and light-headed (thanks again MTX!), and it became evident pretty quickly that I needed to use my cane.  So, I hobbled into work with my cane, and ran into both my boss and my boss’ boss.  It was hard for me.  Part of me is so embarrassed  that I can’t be at work, that I am so broken.  Part of me was embarrassed I had to use my cane in front of my co-workers.  It was hard to be back there, to see things that are different that I didn’t have a part of, to meet a new employee that I didn’t help train, to be an “outsider” at the place where I have spent so much time and energy.  It was great to see everyone, but at the same time, I was so uncertain of my role there, of their opinion of me, of everything.  It was all just strange.

I guess some of it comes down to this: I am different now, both physically and emotionally.  I have a different perspective on everything.  I have different priorities.  I think differently.  Every choice I make now is based on my body.  I am no longer the person I was, but looking at me, the only difference is a cane, a slower walk, more deliberate movement.  I look the same, essentially, but nothing is at all the same.

Even my hair.  Maybe if it falls out enough I’ll look different enough to signal the changes to the people around me.  I hope not.  But I guess I need to find a bright side right?   If I find the bright side (like time with my kids), maybe I can find some peace with this whole new normal where nothing is the same.  Peace would be nice.

 

Mornings=Pain

I feel like I should warn you: I’m in a bad mood.

I really hate morning.  I was never a morning person, but now mornings are so awful, so painful, that I just absolutely dread them.  For whatever reason, the first two hours of the day, so many parts of my body hurt, parts that don’t hurt any other time, from head to toe I hurt.  Oh, I am always pretty sure it’ll dwindle within a couple of hours, when the prednisone, naproxen and Lyrica hit.  Til then I am miserable.

It’s hard to deal with mornings when you are in this much pain.

Add to that, no one in my house seems to get it.  I mean, how can they?  Until you have experienced this kind of pain on a consistent basis you can’t really imagine it.  So the uninitiated, the normal people, can try but the most they can come up with is a stubbed toe or maybe even the time they broke their arm.  After all, that kind of pain is bad, no one would quibble with that.  But I don’t think that’s a good comparison.  I am not saying my pain is worse than that, but that it is different.  Having a continual amount of high pain is different, is wearing on the mind and body, in a way that short-term pain just isn’t.  A big chunk of why this pain is so awful is the knowledge that it will be with me forever, that I may have breaks of days or weeks, but this pain is mine.

So no one in my house gets it, and that’s understandable.  And I try not to lash out.  I try hard not to tell everyone to leave me the hell alone until at least nine.  Most days I succeed.  But wow, it’s hard.

Today, it’s just a lot to deal with.  I hurt all over (in case you’re wondering my pain right now is probably around a 6-7 from head to toe), and I have a full day ahead of me, including physical therapy, and all of that just seems like way too much to handle. It feels like too much to expect of me to handle kid pick up, acupuncture, physical therapy, dishes, dinner.  It feels like too much to expect me to keep a positive attitude on top of all of that, to listen sympathetically as everyone else expresses their frustrations which seem so silly to me.  I know I am being unfair, and I don’t care.  I know everyone’s feelings are equally important, but today I just don’t want to do it.  I don’t want to be kind and supportive and understanding.  Instead, I want to take pain medication and hide.  I want someone to take care of me, to be kind and supportive and understanding of me.

But…that’s not the way it goes.  So, I need to pull myself together, ignore the pain until it becomes more tolerable, find some energy to go out and manage my day.  I need to find some damned spoons, because it’s just not going to work if I am out before 8 am.

Yeah, I hate mornings.  And pain.  And pain in the mornings.  But what can you do?  This is my life now, so I guess I have to make the best of it.

Please tell me I am not the only one who feels this way!