Gluten-free day 1: The merry-go-round

February 20, 2012

Drugs, physical therapy, hypnosis, more drugs, diet, tai chi, acupuncture, meditation, psychotherapy, herbal medicine, yet more drugs…. I’ve tried a lot of different “treatments” over the years, and so far some have helped a bit, but none has eliminated any of my symptoms.  At best, a couple have lessened the pain, but that’s about it.

Now I’m looking at what could be the holy grail of treatments: a gluten-free diet.  According to books, web sites, doctors, and the nutritionist I met with last week, this could be the key.  Of course, the logical, weary, tired part of me knows that this could be just one more false lead.  Still, I’d like to hold out a little hope.

If the books and experts and such are right, then gluten can triggers an autoimmune response in the body, and eliminating gluten and relieve that response and therefore the symptoms.  In six months I could have less pain, less fatigue, less nausea…. it’s almost too much to hope for!

I’m realistic.  I don’t expected to be “cured” or anything close to it.  But if I could get a little energy back, that would be the best thing I could imagine right now.  So I figure it’s worth a shot.  Even if this doesn’t work, it probably won’t hurt me.  I just had two days of worse-than-usual nausea from adjusting a medication dose.  Sure, going gluten-free is inconvenient, but if it works, I’ll gladly do it for the rest of my life.

So today was day 1 of being gluten-free.  It was what could literally be the first day of the rest of my new life.  I sure hope it is.

If you can relate to this, it would be so awesome if you’d click on one of the social media icons below to share this.  Thanks!

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High on life and Prednisone

February 17, 2012

After months of feeling tired, run-down, and sometimes even fatigued, I suddenly had two good days in a row!  I was so excited that maybe something could be changing.  I mean, I wasn’t about to do some huge amount of activity, but I could do a bunch of little things and still feel good.

And then I remembered that I had taken Prednisone these two days.  Damn!

The clinical details aren’t important.  It comes down to this: trying to prevent physical and mental harm, and also trying to avoid another long stint on Prednisone, my doc and I agreed that I’d take the steroid for just a few days, including the taper.  It seems to be helping the pain that it’s supposed to treat, but it’s too soon to be sure of that.  In the meantime, it gave me an energy boost that is both exhilarating and depressing.

It’s a bit depressing to know that this energy burst probably won’t last, but it’s also so wonderful to remember how it feels to not be tired all the time.  True, even with the drugs I’m not exactly about to take a super long walk or go to the gym, but yesterday I saw a doc, read at the library for a couple hours, then hung out with a friend at her place for an hour (and even played with her kid a bit), then came home and was a bit tired, but not really worn down like usual.  And for the last few months, that would have been too much activity for one day and I would have felt horrible the next day, but today I’m actually ok.

It’s always the same old thing: I know I could take Prednisone long term and feel better.  I could go back to work, hang out with friends, date, travel…. get my life back!  But I’d also be slowly poisoning myself, and that’s not ok.

Then again, living like this isn’t ok either.  There’s no good answer.  I’m going to try some dietary changes and maybe that will help.  In the meantime, I’ll be holding onto the precious memory from this week of what it feels like to do things without feeling exhausted.  I can hardly wait to feel that way again…. one day.

If you can relate to this, it would be so awesome if you’d click on one of the social media icons below to share this.  Thanks!

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Time to stop editing my health

February 14, 2012

“Can you come to brunch on Sunday?”  Gee, why does that suddenly seem like such a complicated question?

I was invited to a potluck brunch for this weekend, and as I was giving my answer, it occurred to me just how many different answers I constantly give to that same kind of invitation, depending on who’s inviting me and how I feel at the time.  Right now I’m starting to flare (well, a flare within a flare) and that makes this weekend especially unpredictable (or maybe just predictable in a way I’m refusing to believe at the moment.)  There’s always the question of how much to share, and what do I really want this person to know?  And then I realized the most important point of all.  But I’ll get to that.

Invitation: I want to be there, but I know I might not be able to make it.  What to say?  I need an excuse, in case I don’t show up.

Close friend: I’m starting to have some bad pain in my foot, so I don’t know if I can make it, but I’ll be there if I can.  I’ll let you know, but it might be at the last minute.

Everyone else (these answers hint at the truth for less-close friends, and are totally uninformative for acquaintances): I may have to [insert weak excuse here], but I’ll try my best to be there.

Preparing: I don’t know if I can go, but even if I can, it might be tough.

Close friend: The pain is worse.  If I make it, I won’t be able to bring anything for the potluck.  Cooking isn’t happening now, and I wouldn’t be able to walk through a store to pick something up.

Everyone else: Um, by the way, is there parking at your place?  Yes, I’d normally walk, but I, um, have to be someplace afterwards and I’ll need my car.  Oh, and what floor do you live on?  Is there an elevator?  Oh, just wondering.  I, um, have a bad knee.

Day of: If I can make it, then all’s good, and if anyone comments on my limp or other visible symptoms, I’ll just make something up.  But if I can’t make it…..

Close friend: Damn this fucking pain!  Hopefully I can make it next time.  I hope you have a great party – let me know how it goes!

Everyone else: [Short email] I couldn’t get out of that other thing [mention previous weak excuse].  I won’t be able to make it, but thanks anyway.  Hopefully I’ll be there next time!

How do you handle this kind of thing?  I do this because it’s the best I can think of, but what I wonder what other people do and if there’s a better option.  I hate hate hate editing myself.  In all other parts of my life I just say what’s on my mind and it’s so much easier.

And then the most obvious point came up and whacked me on the head: Why do I do this?  Why do I make up different stories for different people?  Why not tell everyone the truth?  Obviously I wouldn’t tell a stranger the whole truth – that’s way too complicated.  But why not just say that I have pain sometimes, and right now it’s acting up, so I can’t predict if I’ll be able to make it to the brunch on Sunday.  Sure, they may have a lot of follow-up questions, but if I’m not in the mood to deal with it, I can always brush them off.  I can say that I can’t talk about it now, but I’d love to set aside a time to go over it with them later.  Why not?  

I think that I may just have to try this from now on.  It may not be easy, but balancing out the different lies and half-truths isn’t so easy either.  Besides, I’m generally a very honest person.  People think I’m honest to a fault.  The one thing I lie about is my health, and that’s just stupid.  I don’t have the physical, mental, or emotional strength to deal with that kind of crap, so why am I wasting my precious energy on it?  So for the next few months I’ll try telling the truth to everyone.  I can’t wait to see how that goes.  And it’ll have a fantastic added bonus: I won’t have to worry anymore about when and how to broach the topic – everyone will already know!

If you can relate to this, it would be so awesome if you’d click on one of the social media icons below to share this.  Thanks!

2 Comments | Decisions, Expectations, Frustration, Isolation, Limitations, Pain, Rants, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

The stress of handling stress

February 11, 2012

“Avoid stress and get more sleep.”

That was my doctor’s advice when I was first diagnosed with an autoimmune condition.  After 11 years of symptoms, I finally had some idea of what was wrong, and the best he could do was “avoid stress and get more sleep”???  Was he kidding me?  After all, if it was so easy to do, everyone would do it, right?

Well, it’s not easy, but it is possible.  And I’m pretty good at it, especially for an uptight type A control freak.

But sometimes stress isn’t so easy to avoid.  There’s the stress of meeting a work deadline.  There’s the stress of handling these damn CIs.  But then there’s the stress involved with the illness or death of a loved one.  I’m doing pretty well with the first two, but this last one is really a problem.

I know what can happen if I let the stress get to me, but when the doctor says a loved one could die “any day now”…. well how is anyone supposed to not feel stress?  Today was a tough day.  She was in the hospital for the second time in just a few weeks.  And it was also the anniversary of the death of another loved one.  I couldn’t visit the hospital thanks to my crappy immune system, so I stayed inside, did laundry, watched tv, and worked on a project that I know she’ll love.  I just hope she’s around to see its completion.

Anyone would feel stress at a time like this.  I just have to find a way to handle it the bet I can.  Because I know what the stress can do… and I have to somehow make sure that doesn’t happen.

 

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