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:

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 ( 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. (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?


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.



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!

Side Effects

Let me be honest: I find side effects totally insulting.

Most of us with chronic illnesses take a whole lot of medications.  Most of those medications come with a long list of side effects.  As patients, we are forced to decide (more often than most people) whether the risk is worth the reward.  We must choose whether possible liver problems are worth relief from joint pain and swelling, whether mood swings are worth relief from inflammation.  Constant choices.  It’s exhausting.

I have learned to read ALL of the patient information on my medications.  I google them all and check multiple websites.  I make sure I know the rare side effects as well as the common ones.  I check for medication interactions before I take anything new.  Oh sure, I believe my doctor is smart and knows what the best treatment is for my RA and fibro, but I also believe mistakes happen.  I believe that my health care is ultimately my responsibility.  So I research, double check, triple check.  That too is exhausting.

But neither of those is why I find side effects insulting.  I hurt all the time.  I am tired beyond tired.  I am weak.  I get depressed.  So I take medication to help with those things.  Sometimes the medications help a lot, sometimes not at all.  But…all of them come with great big side effects that I must learn to live with.

So, on top of being in pain, being tired and weak, having depression, I now also: have difficulty sleeping (side effect of Welburtrin AND prednisone), have mood swings (prednisone), am a bit foggy brained for part of the day (Lyrica), have fish burps (fish oil), have occasional stomach issues (naproxen), and most fun of all, have a day or two of horrible fatigue and nausea (Methotrexate).

Those are my regular side effects from my medications.  What about the possible long term ones- hair loss, bone depletion, liver failure, kidney problems, ulcers, cancer.  Fun!

Is all that worth it?  Yes, probably.  I am not sure how I would feel without all the chemicals.  Probably horribly depressed and unable to actually move.  So yeah, the side effects are better than that life.  But here’s the thing I wonder, the thing that makes me get upset and insulted:

if scientists can figure out how to make these meds, can cure cancer, can find ways to travel to space, can do all the amazing things they can do, why in the hell can’t they make medications that don’t make us so miserable?  I know I’m asking a lot.  I really do.   But wow, those of us who have to take so many medications, so many really strong medications, have too many side effects.  It is TOO much, and I think scientists and/or drug companies should start thinking about chronic illness and chronic care in a different way.  Don’t make a pill that trades joint pain for cancer!

Ok.  Rant over.  As you might have guessed today is my post-MTX day, aka day from hell.  Day of fatigue, nausea and headaches, despite doubling my dose of folic acid.  But…I will stick with it.  Because if MTX works (in another two months, we may know!), it will likely be worth one day of hell if it gets me six days of functional.

And now I am going to bed.

Being Selfish: Learning to be a Parent Who is Chronically Ill

I have three children, ranging from age 8-14.  I have been a single mother for a large chunk of the youngest’s life, so I know a whole lot about self-sacrifice.  I know a lot about having to put their needs before my own.  I have had years of practice.   There were times I absolutely gave them too much, put myself too far into the background.  But for the most part, I think I struck a mostly healthy balance of their needs and mine (with mine, nearly always, in the background).

I can’t do that anymore.

Don’t get me wrong.  They are still at the top of the importance scale.  I still make sure they are tended to, that all their needs (and many of their wants) are met.  My partner does the same.  But I am no longer a distant fourth to them.  I am pretty well tied for first.  And that’s a huge, difficult adjustment.


This morning, I drag myself out of bed and start my morning, which includes eating breakfast, taking pills, and trying to survive the morning pain and stiffness.  The kids have gotten themselves out of bed (too early-grrr), gotten their own breakfasts and gotten ready for school.  Youngest comes out from brushing her teeth and says to me, “My throat hurts and my head hurts.”  My first response (and one I unfortunately said out loud): “Crap. You can’t get sick.”  Because I am selfish.  Because I can’t take care of another sick person right now.  Because I absolutely can not run the risk of getting sick myself.

I feel so guilty that I no longer seem capable of completely selfless responses.  I feel guilty that I can’t seem to be able to just put my own feelings in the backseat.  At the same time, I am totally aware that right now, it would be bad for everyone if I did put myself last.  The truth of it is: I need to get better.  I need to do all of the things I am doing right now to feel better, so that I can be their mostly selfless mother again.  I need to feel better so I can take care of them, and enjoy being with them.  And I have to take care of myself, have to put myself near the front of the line, in order to feel better.

I feel so so guilty, so much like a bad mother (even though deep down, I know I am not a bad mom. Maybe just not a great one right now). But I keep reminding myself of something that my best friend says when we as parents are making a choice for our kids (usually it’s deciding whether to buy some odd toy or whether to take them to, say, Chuckie Cheese): “You have to love yourself, too.”  That has helped me steer clear of so many toys that would have made me crazy, so many choices that I would have hated, and my kids have survived every one of those decisions intact.  So, now, when I am struggling with the guilt of making my health a priority, I remind myself that I have to love myself, that I have to do this for myself, for my sake and for theirs.  It makes it just a little easier to live with the decisions I make each day.

You have to love yourself, too.  A lesson for all of us, not just the parents.  A definite lesson all of us with chronic illnesses need to learn, to remember, to believe.

You have to love yourself, too.

Building a Team

One of the first books I read about chronic illness, You Don’t Look Sick by Joy Selak and Dr. Steven Overman, talked a bit about building a health team of doctors you feel like are really on your team.  These aren’t just doctors you go to because they were the first in the phonebook or because your insurance company made you.  They are doctors you feel have your best interests at heart and who really get what you want in your journey.  At the time that I read that, I had had exactly two doctors, both of whom I liked just fine, and I wasn’t really thinking about needing an entire team to help me.

But since then, I have had been to a few more doctors.  I have had a whole lot of conversations with various people.  I have expanded my care.  And I am realizing that I do, in fact, have a team behind me.  My team includes:

My Primary Care doc, Dr. W, who didn’t blink when I went in and said at the end of an appointment for something else, “oh and I have been really feeling awful for several months.  Very tired, weak; everything is hard to do.”  Instead, she ordered a ton of labs and promptly referred to me to an excellent rheumatologist.

Which brings me to Dr K, my rheumy.  I like her, though she isn’t warm and fuzzy.  There’s something about the way she doesn’t think you’re odd when you explain a symptom, the way she even remembers the phrasing (“my arms feel heavy”) to ask you about it later.  I also very much like that she and her staff never seem to hurry through an appointment, and yet never keep you waiting for long.

Next up, and this one seems silly probably, is the entire staff at the CDI (Center for Diagnostic Imaging) that is located within my rheumy’s building.  I have now been there for two ct’s and several xrays, and every person there is friendly, knowledgeable and helpful.  They explain everything they are doing, and truly have the patient’s best interests at heart. I will have all of my imaging done there, if I can help it.

Even though he’s an odd duck, I also have to add my shrink to the mix.  Dr. A always tells me weird stories about articles he read in journals, or books he’s read.  But he also explains his clinical outlook, and he doesn’t dole out meds like candy, the way so many other psychiatrists do.  I like that about him.

I also feel like my team is made up of some non-doctor types.  My pharmacist, Michelle, who knows me by name, remembers all of my medications and diseases, and always asks me how it’s going.  There’s my acupuncturist, the newest addition to my team, who isn’t intimidated by high levels or multiple problems.  She truly loves what she does and it has made me a believer in acupuncture, as a healing mechanism (even if it doesn’t work for me- jury is still out).   There’s Jean, the nurse at my rheumy’s office.  I have never met Jean because she’s not the nurse who helps with patients in the office, but every email and every phone call is routed through Jean, who always answers promptly and who is always supportive and helpful.   I also feel like I need to add my best friend L to my team, not just because she’s my best friend, but because she is so knowledgeable about all of the stuff I have been going through because of her own health journey; she has also been the one to encourage me to try alternative treatments and who found me my acupuncturist.  L is on my team because she gets how I feel without having any doubts, because she helps me figure out ways to feel better.  I couldn’t ask for a better friend (or team member!).

NOT on my health care team: the urologist who was so disorganized and so incredibly unhelpful at my own appointment with him and who has never called me back with test results over a month later (I got the results on my own, thank you very much).  But that reminds me, I need to find a new urologist!  *Sigh*

So far, I feel pretty good about the team I assembling.  I hadn’t thought at the beginning of this that I would need a whole team, but I really do.  Today, I am hoping to add a physical therapist to the mix, but we’ll see how I like them.  The truth is, these diseases are hard; living with chronic pain is hard.  We can’t do it alone, and we shouldn’t try.  I have been so lucky to have found a good team without too much effort, but I know it won’t always be this easy.  I know it isn’t that easy for most people.  But, I feel so strongly that it is necessary that all I can really say to people who don’t have a good team is keep trying!  It’s worth it.  Because we all need to know that we have a group of people in our corner, people who don’t just have good attitudes but who genuinely want us to be well and don’t feel like there is only one right way to get there. We need doctors, and health providers, who have open-minds and a willingness to try new things.  We need people who will answer our questions honestly, who will give us information and allow us to make our own decisions (when possible, of course).

I have been feeling pretty blue lately, pretty discouraged with how crappy my body feels all the time.  But I do know, at the bottom of all that worry and fear and sadness, that I have a team who will help me feel better eventually.  I just have to stick with them and be patient.  I just have to do my part on the team, hard as it may be.