Taming the Wolf

The ups and downs of life as an early 30s career girl trying to balance the various demands of life, including fibromyalgia. autoimmune and dietary issues. Somedays I succeed more than others, but it’s an adventure…

Diet and Pain March 22, 2009

Filed under: Diet,Fibromyalgia,Flare,lupus,Natural,Organic — jwz1978 @ 5:32 pm
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The last couple weeks I’ve been thinking much more about my diet and how it can affect/ease/increase my pain and symptoms.  I’ve seen a dietitian (not overly helpful, but some) and my naturopath and I have been talking diet too.    It’s not that I’m sceptical.  I know that some foods are moe inflammatory than others.   And I’ve made an effort these past few weeks to cut back on dairy, eat less processed foods, and cut WAY back on sodium (to try to avoid prednisone weight gain).  I thought that the overall effect of diet was pretty mild though.  When I was asked about “trigger” foods, I sort of brushed it off, knowing there were certain foods I just can’t eat because I don’t digest them (eggs, onions and most anything containing “fake” sugars-particularly diet pop), but not knowing of any that would set off pain or headaches, etc.

Until this weekend.  Yesterday was my husband’s birthday and we spent the day out with friends at the golf club (beer and cards and basketball) then a local pizza joint (pizza and beer) and back to the house.  I didn’t drink a ton of beer, but over the course of the day I certainly drank a lot more than I have recently.  And for both lunch and dinner, my meals consisted of pizza.  By the time we got home last night about 10 pm, I was not doing well.  Mega headache.  Hurting everywhere.  Absolutely wiped (in all fairness, it was 10pm, but still).  I managed to make it until 11, but I was miserable.  And so despite a houseful of people, I took myself up to bed, took an Ambien, and slept.  A total wake up for me as to diet and “trigger” foods.  This was a definite, food-related incident for me.  I don’t know that I’ve ever noticed something like this before, blowing my theory out of the water that my my diet wasn’t affecting my flares in any real way.

I thought it was the beer that did it.  So last night I took down a TON of water, same with all day today.  Today was better, but I was still achy and tired, a bit more than nomal the past few days.  Turns out I think I was wrong on that though being my “trigger”.  Tonight, out of laziness, I ate the last two squares of my BBQ chicken pizza and the crust/sauce of a deep dish slice (having removed the pepperoni and cheese).  The reaction my body had seemed almost instant.  Within 10 minutes, I had a splitting headache, the roof/back of my mouth had swollen and I felt like crud again in general.  While I’m sure the beer didn’t help last night, it appears as though pizza is not a friend of mine.

Now I’m left with questions…and a splitting headache.  Is it pizza in general?  The BBQ sauce? The cheese? The crust (gluten)?  I’d been fighting the idea of the elimination diet and removing meat, dairy and gluten from my diet for 3 or 4 weeks to see what, if any, the effect would be.  I’m now a believer and will probably start sooner rather than later.  I still think gluten is going to be next to impossible to eliminate, particularly since I’m coming up on a big period of travel for work over the next several months.  But, I now feel the need to do this, and to start planning out my meals more carefully.  Last weekend I bought a book on a whim – Anti-Inflammatory Foods for Health – when I was at BN.  I think I’ll spend some time tonight perusing its pages and recipes.

But the moral of this long, rather boring story: I’m now a believer that my diet affects my pain and my headaches, at least, or maybe especially, during a flare.  It’s going to be a while before I brave pizza again.  If anyone has tips or experience with this, I’d appreciate hearing from you, particularly if you have suggestions on eating out (considering I’ll do this for days, if not weeks, at a time…)

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Fear of the Unknown March 18, 2009

Filed under: Fibromyalgia,lupus,Treatment — jwz1978 @ 8:15 pm
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At my rheumatologist appointment on Monday, I was told again, by yet another specialist, that he wasn’t sure how to classify my ailments.  Confident on fibromyalgia, but wasn’t sure if low-grade lupus or perhaps a non-associated auto immune disorder.  Something is wrong, but there just isn’t a definitive answer.  This isn’t the first time I’ve heard this, years ago when I made the rounds of doctors, I heard similar things.  My blood results are never quite conclusive the more testing that is done.  (It also makes me wonder if perhaps there is too much reliance on blood testing, but that’s enough for a whole ‘other posting 😉 )

For some reason, this really bothers me.  I know that as far as treatment goes, it really doesn’t make a difference.  And it’s not like there’s a “cure” or set path of treatment for lupus, general auto immune issues or fibromyalgia.  But for some reason, I want to KNOW what is wrong with me.  I think it’s easier for me to wrap my head around maybe, to be able to put a name to the problems. That, and it’s easier to try to explain to others too.  But when it comes down to it, I want to know what’s going on with my body and not knowing drives the control freak in me nuts.

After about 11 years of this though, part of me doesn’t wonder if the control freak side of me didn’t develop in part out of my health issues and all the uncertainty that surrounds them.  So much unknown and so many things I cannot control arising out of that making me overcompensate by trying to control everything else to the extent possible?  I read a blog toast today on http://www.livingrheum.com about acceptance, and it’s made me wonder what I’ve really accepted about myself and my health and my body and what I just think I have.  And the honest answer at this point is, I just don’t know, but I don’t know that accepting the unknown is something I’ll ever really be able to do.

 

Natural/Organic Bath & Beauty Products March 16, 2009

Filed under: Natural,Organic,Skin care — jwz1978 @ 8:11 pm
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The one thing that came out of my meeting with a dietitian last week that seemed truly aimed at helping me deal with inflammation issues was her suggestion to switch over to organic and natural products to the largest extent possible  To a certain extent, we do that already with our food, but there are definite steps we can take to do that even more and we’re going to try to do that even more.

While at the makeup counter today though at the mall, I got thinking that if the switch to organic/natural was good for me in terms of what I put into my body, that wouldn’t the same be true for what I put ON my body?  Which had led to me thinking about organic/natural bath, beauty and makeup products.  But I have no idea where to begin.

I have super-sensitive skin, but I hope that will be less of an issue with fewer ingredients.  But is there a difference or one I should prefer organic vs. natural?  What are some good brands that are not horribly expensive?  I was looking at Origins and Pangea, but have not used either before.  Does anyone have any suggestions or input on this?  Thanks!

 

Prednisone me… March 11, 2009

Filed under: Drugs,Flare,Medicines,Questions — jwz1978 @ 7:55 pm

While I was thinking about medicines and long term therapy, I thought I’d ask another related question about prednisone.  I started a prednisone burst just over three weeks ago.  20 mg made a quick difference in bringing up the energy level, dramatically.  The pain was improved, at least for a few days.  Then randomly (or so it seems), the pain kicked back in, but different in some ways.  It was more the muscles, not just the joints.  A switch to Ultram ER helped, and the week I was at 15 mg was the best I’ve had in so long.  I even managed to be social over that weekend and stay up late(r)!  But last week I went down to 10 mg, and within two days, the body was letting it be known that it didn’t like it.  Major fatigue again and the pain just ratcheted back up, to where I was doing the Ultram and several doses of Relafen and still not feeling much relief.  I talked to the rheum, who told me not to drop down to 5 mg this week and to stay at 10 mg until my Monday appt.  So now I’m left wondering what next?  What are other options for treatment if lower dosages of prednisone don’t seem to help? The other times I’ve done prednisone bursts, I didn’t have this problem at all, so that sort of worries me too, but it’s been probably close to 10 years since I’ve had to do a burst.  It’s so frustrating (what isn’t with these things), but I was really starting to feel better, really feeling hopeful about things improving, and it sort of felt like the rug was pulled back out from under me.

Does this happen often with prednisone bursts, where you see improvements in your symptoms but then hit the halfway point or so and see it start to go the opposite direction?

 

Fibro or Lupus?

Filed under: Drugs,Fibromyalgia,Flare,Medicines,Questions,Treatment — jwz1978 @ 7:46 pm

This is probably my fault for being uneducated about my illnesses in many ways, but I struggle quite often with trying to figure out what it is that is causing my issues day-to-day.  Is it the auto-immune system rebelling?  Is it the fibromyalgia kicking in?  When I’m not flaring, which I haven’t really in years, I’ve always just assumed that fibro was really my problem, that it was causing my aches and pains and making me more tired than I otherwise would be.  But, over the past few weeks, I’ve begun to wonder, particularly as I accept the fact I need to look at long term treatments here, medically, at least for a while.  Should I push to try some of the newer fibromyalgia treatments such as Lyrica and Cymbalta?  At the same time, I worry about trying those when it seems like the lupus is the major problem at the moment, but then again, I’m not sure I ro the rheum know the source of the symptoms.

The only treatment I’ve tried and had much success with on the lupus front is prednisone, but it seems to be taking fairly high doses for relief this time, so I don’t know how long that will be an option.  Plaquenil and I didn’t get along well when I tried it back in college, so that’s another option that is probably not available to me, or at least would be a last resort.

Not having had to think about this for about 10 years (but knowing that the options are pretty much the same due to a lack of new drugs for treating lupus), I am curious what others take and do to treat and control lupus flares, both short term and long term.  Has anyone with fibromyalgia used Cymbalta or Lyrica?   Thanks for sharing!

 

Taking your meds, with style March 10, 2009

Filed under: Etsy,Fun,Pillbox — jwz1978 @ 7:44 pm
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I’m keeping my posts today short and sweet.  Since this latest flare, I’ve gone back on a variety of meds and a LOT of supplements and vitamins.  I was needing something to carry them around in since I have them split up over the course of the day, but I wasn’t finding anything fun.  I should admit here that I have an addiction to Etsy.  A serious addiction.  But, as related to this, in my Etsy browsing, I came across an artist selling decorated pillboxes.  And better yet, she’ll work with you and customize them!  They really are pieces of art, very pretty, yet sturdy enough to use daily and chuck in the purse on the go.  I started out with one, now I’m up to 4 (variety of sizes for daily use and long weekends) and am gifting them.  If you’re like me and like unique, practical, useful things (but with style), check out this site!  If I can figure out how, I’ll try to post some pictures of mine too…

http://kristilynglass.com/pillboxes.htm

 

The Spoon Theory

Filed under: lupus,Questions,support — jwz1978 @ 7:01 pm

An excellent, well-written piece describing living with lupus.  Well worth reading and sharing http://www.butyoudontlooksick.com/the_spoon_theory/