My Poor, Nodule-Ridden Foot

I have never liked my feet.  Even before lupus and RA, my toes are genetically defunct.  They go every which way and are just gross. 

But recently, I've noticed a new development with my right foot.  First there was a nodule on my big toe, and now there is also a nodule on my little toe.  My foot literally hurts all the time, especially when I put weight on it (which is most of the time).

I am aware that nodules are a very common consequence of RA, but I never realized how debilitating they can actually be. 

It is pretty crazy.  I feel like the nodules get worse by the day, unless I am completely off my feet.  Then they seem to calm down and retreat a little bit.  But otherwise, they hurt something fierce.

I have to grit my teeth in pain, but I have to go on with my daily life because I don’t really have a choice. 

And the nodules also remind me of the nightmare that I've had many times that I wake up and my hands are totally deformed. 

RA can change by the day.  I go to sleep with the nodule looking one way and wake up with it looking differently.  I go to sleep with one nodule and wake up with two.  It's very distressing; I’m not going to lie.

My body is finally starting to show its wear on the outside.  But to the untrained eye, these nodules might not be noticeable.  That's why I point them out in the picture (see photo at the end of this post). 

To me, I noticed them fairly quickly and wondered if my eyes deceived me.  Maybe my feet have always looked like that, with strange bumps of bone forcing their way out.   

But my rheumatologist confirmed that I do in fact have two very angry nodules on my foot. 

I'm not crazy.  They are really there. 

And what this really means is that my illness is in active-disease mode.  Even though it seems that lupus may have the upper hand at the moment, clearly RA is there competing for prominence. 

And visible, painful nodules are a really great way for RA to declare itself to me. 

I thought that maybe I was lucky enough to escape some of the ravages of RA, but I guess not. 

I only hope that the nodules don’t get worse, because that might necessitate a review of, and changes to, my current treatment regimen.

But I’ll just have to wait and see…and keep my eyes peeled…  

My Post-Steroid Life: Stretch Mark Cream And Strap-On Ice Packs

Sounds sexy, right? 

Sometimes RA is so sexy…and soul-crushing.

I’ve been off of steroids for about two months now.  And it has been a struggle.  But I am determined not to go back on them for a long, long time.

Being on steroids is a pain (figuratively).

And being off of steroids is a pain (literally). 

For me, being off of steroids means that I have a significant increase in pain and swelling, especially in my knees and feet.

I haven’t really found a way to deal with the feet pain.  It’s pretty insidious when the bones in your feet hurt. 

For my knee pain, I was really excited to find an ice pack that actually “straps on” with Velcro.  It’s great because I can wear it at night and not worry about it falling off.

Oh, the simple things in life.  Who would have ever thought that an ice pack would be so exciting?    

The other issue I had during this round of steroids, while on Methylprednisolone, which I never had when I was on Prednisone, is that I have stretch marks on my sides and on my under arms just above my armpits. 

Apparently this is something that can happen.  Although, like I say, it has never happened to me before.  It’s also troublesome because I didn’t gain the amount of weight while on steroids that you suspect would cause stretch marks.

They don’t hurt or anything, but they are totally unsightly and embarrassing; luckily they are mostly unseen, although I am constantly aware that they are there. 

I got some stretch mark cream, which seems to be lightening them up a bit, but seems like a product I shouldn’t need at this point in my life.

One thing I do miss about steroids is that they make my shoulders feel so much looser and lighter, like an unbearable weight has been lifted off of them.      

But I obviously don’t miss all of the pesky side effects, and even though I am off of them, I am still trying to get rid of the side effects. 

The whole steroid thing is something that I really struggle with.  Of course I would rather not be in pain than be in pain, if I had a choice.  But sometimes, steroids just feel like more work than they’re worth.

I recently met several women in their 20s who have had to have full hip replacements due to being on chronically high doses of steroids.  This is definitely not worth it to me. 

The prospect of a hip replacement does not thrill me at all.

So I’m going to try and stay off of steroids for as long as I can.  And I’m going to try and complain to a minimal degree while I’m off of them.     

But the reality is, I have seen my body change in myriad ways over the past six years that I have been sick.  And I think it’s a really difficult aspect of being chronically ill that you don’t have control over.  Your body changes – whether from the ravages of the disease, medication side effects, or many other reasons – and you’re helpless to stop it from happening.  You have to sit back and watch it happen.  And so do the people around you. 

When I first got sick, I was so ill, that I would have done anything to get better.  And I have made concessions along the way in terms of telling myself I would never give myself injections to then getting to the point where I did give myself injections.

But I am still on the fence when it comes to steroids.  I’ve made concessions and have gone back on them when I didn’t want to, but they will never be a permanent solution for me.  Finding that permanent solution is something I’m not sure I will ever find.     

Sometimes I feel like when you’re chronically ill, it’s expected that you’ll evolve and not worry about superficial aspects of yourself.  Like if steroids are helping my pain, I shouldn’t be worried or annoyed that I’ve gained weight and feel fat. 

But the truth is, one of the most stunning aspects of being chronically ill is looking in the mirror and not recognizing the person that is staring back at you, whether the lack of recognition is due to literal or figurative changes.

I try to be realistic about my situation.  I try to focus on the positive.  And I try to cut myself some slack when my illnesses or medications change my body.  But sometimes it’s more frustrating than being in (literal) pain.   

X Marks The Spot: Pain And The Reality Of A Little White Pill

On the Arthritis Foundation website, they have a feature called “Look Up By Body Part,” which allows you to select a body part and see what symptoms are common in that area of the body.

I started looking at it and I realized that for me, the question isn’t what does hurt, but what doesn’t.

It’s creeping in.  And not slowly, I’m afraid.

Increasingly I struggle with hours of morning stiffness, doing and undoing buttons, maneuvering my coat on, and fastening my bra.  My left ankle has been swollen for the last few weeks.  I haven’t really had issues with my ankles before, so this doesn’t make me very happy, to say the least.

I feel like I am becoming my 86-year- old grandmother.  And I mean no disrespect by that at all.  It’s just incredibly frustrating and discouraging to see my body in a constant state of flux, and not always in a good way.

I am trying to play the “I don’t need meds game,” but I think I’m only hurting myself at this point. 

And 5mg of Prednisone is unfortunately doing nothing for me.  I wish it was.  Because I hate being on steroids.  And if 5 mg is doing nothing, that means I will probably have to consider the option of increasing the dose.  And I don’t really want to do that.    

On a good day, “X” marks the spot.  I can easily pinpoint one or a few areas where I am in pain.  On a bad day, I can’t pinpoint the pain.  It’s everywhere.  And it weighs me down.  I feel like I have the weight of the world on my shoulders, and my shoulders feel like they will collapse under the weight of everything.

Sometimes when I get really exhausted, I cry.  Like a four-year-old.  But I’ve come to realize that this isn’t a babyish thing.  It’s frustration.  That I want to keep going, even when my body says stop.  And sometimes fighting against it works better than other times.  But that’s the thing about this body.  When it wants me to stop, it makes me stop.  Pain and exhaustion are hard to fight against.

And Thanksgiving was crazy, in a good way.  We were in New York with my boyfriend’s family.  And his brother got married the day after Thanksgiving.  It was busy.  And I was worried that I would crash.  But I didn’t.  At least not while we were gone.  But just a few hours after getting home, pain and exhaustion hit me.  This isn’t a reflection on the week that we spent away.  Overall it was pretty chill.  We didn’t go to bed super late, and we were able to sleep in.  We didn’t do a ton of strenuous activity. 

It’s just me.  This is my body.  It’s the way it works now.  All activities cost me, whether I want them to or not.  I fared very well overall on this trip.  I think a lot of it had to do with excitement and adrenaline.  I skated through and didn’t really have to think about it.  Even though my boyfriend’s family was very good about checking in with me about how I was feeling. 

This is just the way it is.  I lucked out.  For the time we were away, I felt reasonably well.  And now my body is paying me back.  You get a reprieve and then you suffer the consequences of that reprieve.  This is about checks and balances.  A reprieve isn’t free.  It comes at a cost. 

And I know this.  But I think this is one of the hardest things to accept about illness – that my body has limitations that I just can’t always fight against. 

I woke up this morning feeling pretty bad.  I got up and went back to bed three times.  I didn’t even know if I would have the energy to write this post.  But here I am.

I wish I could say that tomorrow will be great.  It might be, or it might not.  The reality is that I don’t know from day to day, or hour to hour, for that matter, how I am going to feel. 

And I try not to burden other people with this.  I could complain all the time, about every little ache and pain.  And there are certain people in my life who do get the laundry list of things that aren’t working for me.  But I don’t see how complaining serves me or anybody else.  I guess I do vent my frustrations here, and maybe that is akin to complaining.  But I’m not trying to be whiny.  I’m just stating the facts. 

Life is hard.  I have good days, and I have bad days.  It’s a good period when the good days outnumber the bad days, less so when the bad days outnumber the good.  And I’m eagerly awaiting the appointment I have with my rheumatologist in about ten days.  I wasn’t supposed to see him until February, but things seem to be getting worse and not better and we need to figure out what the next step is going to be.