Tag Archives: rheumatoid disease

One of the symptoms common to many chronic illnesses is "brain fog".  It's a nebulous thing that doesn't sound like much until you're dealing with it.  Once you have dealt with it, you realize how debilitating it is, all on its own.  Trying to describe it to someone else is probably futile, but here goes.  Imagine being incredibly hung over, and being woken up out of the dead sleep of the hung over by a blaring alarm.  If you can imagine (or remember) that feeling of complete disorientation when your brain is refusing to make connections with what's around you and you can't remember where you are, or what's happening and you can't figure it out because neurons seem to be mis-firing... well, that's about it.  Except it doesn't clear up once you wake up, shower, and get some coffee in you.  Or it only partially clears and like the fog that hangs over a swamp, clumps together and drifts in and out throughout the day.  Yep, loads of fun.

It occurred to me to check my blog today, and I was shocked to see that it has been two months since I've posted anything.  Surely not!  But of course, yes it has.  It doesn't seem like it's been that long from my perspective.  But I've been slogging through the days with worsening fatigue and brain fog and hadn't realized how bad it had gotten.  I mean, I *knew*, but I didn't really *realize*.

True to my nature, I realized things were sliding the wrong direction, and I researched the hell out of everything.  I determined that I had all the symptoms of low thyroid, and had requested labs drawn by my doctor.  I've had increased frequency and severity of my migraines since mid-December, and have essentially quit trying to work out or do anything beyond what I've had to in order to get through life.  This 6-week session in school has been a disaster by my standards, as I'm currently pulling a high "C", and while I'm still effective at work it's been an uphill challenge for me and I don't feel I've been as good as I should.

My labs showed my thyroid factors to mostly be in the low end of normal, and my doctor sent me for a sonogram.  Which showed a number of very small nodules which are not concerning for cancer or anything (thank goodness) but my research turned up a link to a medication I've been on for a couple of years now for my rheumatoid disease.  Dr. B had indicated she wanted to try taking me off of it at our last visit to see if I was in remission due to my lack of swollen joints and good labs, but I'd been resistant to that.  Now that it seems to be implicated in continuing joint pain, fatigue, and brain fog I guess it's not a bad idea.  I stopped taking it last week, and I believe my fatigue and brain fog are starting to lift.

Of course, chronic illness is teaching me (the hard way) not to trust it when I start feeling good.  I view it with total suspicion.  Is it a trap or a trick?  Is it luring me into trying to do too much today so I'll be flat on my back feeling like a truck ran me over tomorrow?  Or is it for real, but removing the only thing inhibiting my rheumatoid disease going to grant me a few days of blissful normality before the spikes grow back in the arches of my feet and my hands start feeling the vices closing in again?

Hope and trust is what chronic illness robs you of.  Today's post should be one of hope and achievement that I've located what was causing my problem (most likely) and that I'll start feeling better again.  That I'll be able to re-join activities that I've been wanting to, and my quality of life will get better.  Instead my attempt at realism likely reads as hopelessly pessimistic.  I really am not a pessimist.  I believe that I'll navigate this chronic illness and find a balance for my life that works for me.  I just have quit believing that I'll ever see what I used to think of as "normal" again.  Which is a little sad, and that's OK.  I'm one who believes that if you constantly expect the world to give you roses, and it doesn't, the disappointment crushes you.  But if you prepare for it to slap you in the face and every once in a while you get roses, then you're delighted.  Maybe there's a middle ground I've yet to find.  We'll see.

In my last post, I referenced my autoimmune disorder as 'rheumatoid disease' (RD) instead of calling it psoriatic arthritis or rheumatoid arthritis.  I'm going to continue using the terms autoimmune disorder (AI) or rheumatoid disease (RD) instead of PsA or RA because it better describes the disease process instead of just one of the symptoms.  The naming of the diseases by one of the symptoms has caused a lot of the public to be very confused about how serious these conditions are.

One of the biggest misconceptions about PsA or RA is caused by the word 'arthritis'.  Without getting too medical with you, the term arthritis basically just means inflamed joints with stiffness.  There are many reasons people get arthritis, and autoimmune conditions are just one group of those reasons.  People tend to think of all arthritis as one thing though, and so those of us with RD hear a lot of things like "my grandmother had that, and Tylenol was all she needed for her pain" or "your joints would quit hurting if you lost weight" or "I have that, and I take glucosamine and it fixed it".

It is incredibly frustrating to have RD and people continually tell you how to fix it.  It's even more frustrating when they're telling you how to fix it and they don't even understand the condition.  This is not your grandmother's arthritis.  Unless, of course, your grandmother had RD in which case you should know better.

I sound harsh.  I should apologize.

But I won't.

Instead, I'm going to offer some insight for those of you tempted to tell me how to fix my RD, imply that my pain isn't real or isn't significant, or imply that I'm suffering this just because I'm not trying hard enough to fix it.

RD is a systemic disease, and a malfunction of the immune system.  If whatever cure you're proposing had real merit, the rheumatologists and patient groups would be all over it instead of prescribing immune suppressing drugs up to and including chemotherapy agents.  So while gluten-free, paleo, nightshade elimination, yoga, magic supplements or whatever can help some RD patients, it is by no means something that will work for everyone.  Some of these, like certain supplements, are contraindicated with some medications.  Many RD patients are struggling just to get by and can't manage special diets or we've already tried them.

There is virtually zero chance that you would be the first person to suggest ANY of these thing to an RD patient who has had the diagnosis longer than 12 hours and access to the internet.  Please, for the love of all that's holy, keep it to yourself.

I know you want to help find a solution for your friend or loved one.  That's human nature.  Believe me, we want a solution.  But by the time we've heard that tumeric will cure our pain for the hundredth time, and either we can't take it with our current medicine or we tried it and it doesn't work, we just want to scream.  Same goes for every other "cure" out there.

You can absolutely help, though.  Until medicine or magic comes up with a real cure, we need all the help, love, and support we can get in adjusting to our new normal and managing our condition the best we can.  Be understanding when we can't participate with things the way we used to, or cancel at the last minute because we're out of spoons.  Offer tangible help when and where you can (and when we need it) in the form of preparing food, childcare, housekeeping, lawn care, handyman services, or just plain old companionship.  If you're a person who researches medical things, by all means let us know if you see a report or journal talking about a truly new treatment or breakthrough.  If nothing else, just let us know that you hear us, witness our struggle, and let us know you're with us.  It helps more than you know.

Winter is a hard time to be a Spoonie.  Well, it is for me, anyway.  Here in Texas, the weather is mostly mild, but weather fronts come through every few days and the temperature variances are crazy.  Yesterday it was in the high 70s, this morning it was in the low 30s and we'll have a high in the high 50s and by Friday it'll be in the 80s.  Even on medication, my joints don't know what to make of this insanity.  I woke up this morning incredibly fatigued even though I slept well most of the night, and all of my joints aching furiously.  Luckily, it's a work from home day for me, so I can wrap up in a blanket and turn the space heater on.

I'm still adjusting to the idea that I have a chronic condition and that my life will never be like it was before.  My brain stubbornly resists even thinking the word 'disability' even though I've technically had one most of my life, and now I have two.  Migraines run in my family and we all just live with it the best we can.  It's only after learning about my rheumatoid disease and researching about it that I've realized that it's really my second chronic condition, and yes, disability.  I don't know why I'm finding it painful and shaming to use that word.  It feels overly dramatic, and somehow minimizing of people with more profound disabilities.  I mean, after all, I can still get around, take care of myself, and hold down a job.  Where do I get off calling myself disabled?

Just typing that out, I find that I really, intensely hate the term 'disabled'.  I'm not disabled, dammit.  I have a condition, and one that imposes some disability, but I'm not disabled.  The distinction seems to be an argument about being politically correct, but I'm learning that it feels completely different to say I'm disabled versus I have a disability.  I don't think there should be a law about it or anything, but I think people who are impacted by something have the right to speak out about it and ask for consideration in the way people refer to it.

So yes, life looks different as a Spoonie.  I have to ask for accommodations at work.  Nothing huge, since I already have the ability to work from home, but I need to be able to use that as needed instead of on a regular schedule.  I have to prioritize things in my life, and some things just don't make the cut.  I can't burn the candle at both ends and then catch up on sleep a week or two later like I did when I was younger.  Something has to give.  Right now the top priorities are family, work, and school.  If I don't have the energy, cleaning and cooking don't make the cut.  I don't bounce back from illness and injury the way I used to, so I have to take an extra day or two when I've been sick.  I'm really having to learn to take better care of myself, because allowing one condition to flare up inevitably causes the other to as well.  The cascade of pain and illness costs are huge when that happens.

I've read articles by Spoonies who say their illness is a blessing.  I can't go that far.  What I can say is that there are beneficial lessons that can come from hardship.  Learning to let go of things that aren't as important as others and taking better care of myself are good things.  I won't ever be grateful that I developed rheumatoid disease, or migraines for that matter.  But I will figure out how to live the best life I can with them.