The joy and joint pain of autumn

September 18, 2012

I love autumn.  The heat and humidity of summer are gone, and with them a lot of my extra fatigue and other symptoms have gone.  And it’s pretty.  The sky is clear most days, the leaves change colors (they’re just beginning now,) and the air is crisp.  I’m happy every time I look out the window and see the lovely weather.  This picture is from last year, but you get the idea.

Of course, right now we’re in a transitional time.  Right now, summer is mostly over, but not quite.  And it’s mostly autumn, but not entirely.  We haven’t transitioned completely to the cool days yet.  Sometimes I’m hot in a t-shirt and sometimes I need a sweater.  It’s mixed.

And we all know what that means, right?  If you don’t experience worsening symptoms during spring and fall, then you’ve probably heard from others who do.  My rheumatologist says that her phone rings constantly in the spring and fall.

For me, spring is definitely worse.  My body seems to know that bad times are coming, with summer on the way, so it goes haywire.  But autumn isn’t the easiest thing either.  For the last couple of weeks, it seems to have manifested itself as worsening joint pain, especially in my fingers and wrists.  Now, I’ve had pain in these areas for more than 20 years, so it’s not like I can’t handle the pain itself.  What’s bothering me is that no movement causes stiffness, and small movements from fidgeting makes it worse.  Big movements are good, like washing dishes or cooking or sorting through a pile of books (as long as they aren’t too heavy.)  And the problem is that I just don’t have enough of these big movements to keep my joints happy.  I’m home a lot these days, so I’m open to suggestions for things I can do at home to keep my fingers and joints useful without using up too many of my spoons.  Typing on the computer or reading or watching tv all seem to be bad things for my achy hands, and that’s how I usually fill my days, so I’d love some new ideas.

How’s autumn for you?  Is it a rough transition, or is your body just glad to be out of summer?

Good luck during the changing of the seasons CI folks!  At least it’s pretty.

4 Comments | Expectations, Frustration, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Could I be healthy?

September 13, 2012

When I wrote a couple weeks ago about being hopeful that maybe my health could improve one day, that was based on my own gut feeling (so to speak) that I could get better.  My doctors have not expressed that kind of hope in many years.  My new naturopath has seemed more optimistic, but she has never spoken about our end goal, and I was not ready to ask.  I was afraid to ask.

Today I steeled myself.  I took a deep breath.  I stared blankly at a spot on the opposite wall.  And I asked: “What do you think my prognosis is?  What’s our goal?”

She surprised me with her answer: “That you’ll go back to work, and that at the end of the work day you’ll still feel good and be able to do things.  That you’ll go out and do things on weekends.”

Obviously she misunderstood, so I clarified: “No, I mean, what’s our realistic goal?”

Imagine my shock when she said that yes, that’s the realistic goal.  So of course I asked when she thinks that might happen.

“Within about 1 year from now I expect you’ll be back at work.”

What?!?  I had figured she had a positive outlook for my recovery, but this was more than I had expected.  I didn’t quite believe it, and I still don’t.  1 year seems like such a short time.  After all these years of my body destroying itself, could I really be “cured” in 1 year?  Of course, I wouldn’t really be “cured,” but to be so much healthier seems like the ultimate cure to me.

Of course, she thinks that 1 year is too long.  She practically apologized, explaining that if I had gotten treatment sooner, before my conditions had taken such a toll on my body, then she could have reversed their affects more quickly.  Still, she has helped me more in the last 3 months than my other doctors have in the last 8 years.  And she says that we’ve “only scratched the surface” in terms of treating me.  So maybe it’s possible?

1 year.  12 months.  I can’t seem to grasp this.  Could it be possible?  Could I be relatively “healthy”?  Could I work full time and support myself, and still have the energy to see friends, pursue hobbies, date?  It just doesn’t seem possible.  When I wrote about my hopes before, they felt like a far-off dream.  I figured maybe in a few years, if I was lucky…. but 1 year?  That feels so soon.  Next fall.  Dare I hope?  What if it doesn’t happen?  Would I be too crushed?  But then, what if it does?

Some people dream of buying a bigger house, or driving a fancy car, or flying all over the world in a private jet.  I only want my health and my loved ones.  Could I really be within reach of having it all?  Could I be healthy?

4 Comments | Expectations, Healthcare, Medication, Raves, Support, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Socially limited

August 23, 2012

There’s a woman I know who I really like.  She’s a friend of a friend and we belong to some of the same social groups, so we see each other around, but we haven’t hung out too much outside of that.  Then this week she invited me to her place to watch a movie and hang out with a bunch of other people.  Social time!  I could hang out with someone I like, and hopefully meet some of her cool friends!  I feel like I never get to be social anymore.

And today was no exception.  I just don’t do as well in the evenings.  I have more energy earlier, but people are at work then.  I had my doubts all day long, but I kept hoping I’d make it.  I took a shower so I’d be all nice and clean.  I planned out what I’d bring for food, since I always have to carry food while I’m on this whacky diet.  I thought about what energy threshold would determine if I’d walk or drive that particular distance, and if I had to drive, what route I’d take to get around the road construction near me.  I had it all figured out.  And then I fell asleep.

Taking a nap is generally not a good thing for me.  After a nap, I don’t feel right.  Of course, this wasn’t an intentional nap.  I was reading a book and I fell asleep, simple as that.  After I woke up I felt groggy and just “not right.”  I finally gave in to my rumbling tummy and had a snack.  Then another snack.  Then an early dinner.  I shouldn’t have been so hungry after the huge lunch I ate, but I was.  And I still felt off somehow.  I rested.  I relaxed.  I knitted.  And I still didn’t feel right.  The clock was ticking.  I should have left by now.  I watched tv. I should be there by now.  I read the news.  They’ve probably started the movie.  I washed the dishes.  They’re probably all having fun right now.

I finally gave up.  If I was going to go, I’d have left already.  If I didn’t feel up to leaving by that time, I knew I just wouldn’t be up to it at all.  There was a time I’d have pushed myself to go anyway.  I’d have felt bad the next day, but I would have pushed through, and by the second day I’d be ok.  But those days are long gone.  If I pushed myself today, it could mean 2-3 stuck inside resting, and it just wasn’t worth it.  I have other, daytime plans over the next few days.  I’m in my early 30s but going out in the evening is just out of the question right now.  Sometimes life just sucks.

Thank goodness I can still go out during the day most days!

Leave a Comment » | Expectations, Frustration, Isolation, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Good bye nausea, hello diet

August 15, 2012

Yesterday I said goodbye to the old diet and today I welcome the new diet – AT LAST!

There’s no doubt that the old diet helped – I felt soooo much better within a week of starting it.  But I think I could be doing even better than I already am.  And on top of that, I can bring back a whole lot of foods that I love (pasta sauce! popcorn!) and sure I have to give up a lot of foods I really enjoy (peanuts, broccoli, quinoa) but at least now I know that I’m on the right track.  Ok, sure, the tests aren’t 100% accurate, but it should be pretty damn close!

No, this won’t be easy, but what the hell is?  It’s WORTH IT!  I think that’s something that “healthy” people don’t understand.  A few have said to my face “Oh, I could never be gluten-free.”  To them, the option is to eat foods they love or to give up those foods.  To me, the option is to suffer nausea, diarrhea, abdominal pain, cramping, and fatigue on a regular basis, or to give up some foods that aren’t necessary for my survival.  When you look at it that way, it’s not much of a choice, is it?  So now I’ll give up a few dozen foods on top of gluten.  Some will be temporary and some will be permanent and I really don’t care – I’m just so glad to have a plan!

By the way, for anyone who’s wondering, the mold and herb tests came back with a few minor reactions but nothing much, and I only have one strong chemical reaction, so I’ll be checking all of my cleansers and nail polish (luckily I don’t wear makeup!) to make sure I’m not getting exposed that way.  For me, the big results were all in the food categories, which was really no surprise.

So now I want to say a big THANK YOU to everyone who has helped me.  My parents have been the most amazing, supportive people I could hope for.  Several incredible friends stood by my side offering advice and comfort.  My grandfather generously paid for the test when insurance wouldn’t cover it.  My naturopath suggested the test and went out of her way to get me a discount.  And so many readers have emailed, commented, and tweeted with advice and support.  Thank you everyone!  Let’s face it, in the CI world celebrations can be a bit too rare, so I’m thrilled to have a good reason to celebrate today.  This is only one step in the journey, but it’s a big one!

1 Comment | Educating, Expectations, Healthcare, Limitations, Medication, Pain, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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