Sun Protection August 8, 2010

I am a sun goddess.  Well, I like to think that I was in a former life.  As it is, I am far from a goddess, but I do love the sun.  I love the warmth on my skin, I love not looking like a ghost.  However, the sun does NOT love me.  The sun sensitivity that many with autoimmune issues have hits me hard.  I burn in like 2.2 seconds (sometimes, I think I get red just THINKING about the sun).  I get the rashes and all that, and in general, too much sun makes me feel cruddy.  But I love boating, and so I’ve found ways to manage the sun.  I wear a lot of big floppy hats, I should buy stock in SPF 100 spray, and I found shirts like this rashguard from Athleta.  If you are sun sensitive, this is well worth the investment.  It is unbelievably lightweight, and despite being longsleeved, does not make you hot, even on 90+ degree days.  Air moves right through it, but it has sun protection built into the fabric.  And, right now, it’s on sale!  If you use the code “Hang 20” through today, you get an extra 20% off.  Well worth the investment for anyone with sun concerns who loves to be outdoors.

P.S.  This is the one I love, but they have several other types on sale too!

2010 Des Moines Arthritis Walk May 19, 2010

I sent this out (with a few edits) to the folks at work, and also a similar one to folks on FB.  I thought I’d share it here as well since I’ve been horribly lax in posting lately.  It’s been an interesting experiment in social media as a fundraising tool.  What are some other options people have tried?

Hello everyone!

This upcoming Saturday, May 22, my husband and I are participating in the Des Moines Arthritis Walk as part of Team Hy-Vee. The Arthritis Walk is an Arthritis Foundation event that raises money for arthritis research. Arthritis affects so many of us in so many different ways. As some of you know, I’ve been diagnosed with Fibromyalgia and autoimmune issues for over ten years now, both which fall under the arthritis umbrella. As someone that deals daily with the challenges of arthritis in some of its many forms, it’s my hope that someday a cure can be found, and in the meantime, that we can actively search for more successful treatment options. To say that the current options for treating some forms of arthritis, such as Lupus and Fibromyalgia, are limited is an understatement. But, with continued research, I have hopes that the options available will continue to increase and that mysteries as to cause will continue to be solved.

If you’re free on Saturday, consider participating in the Arthritis Walk this weekend (I’m sure Team Hy-Vee would love more members!). And please consider pledging your support to help us reach our fundraising goals and to support arthritis research. Any pledges are much appreciated!

Thank you for your support!

My page – http://www.kintera.org/faf/donorreg/donorpledge.asp?ievent=312439&supId=289141000&msource=boundlessfun

Could I Have Lupus? April 1, 2009

Me, I already know the answer to that question, and sure enough, I could.   But for others, lupus is not a disease that comes to mind when things start to happen with their health.  It may not be the first thing (or twentieth) thing your doctor will think of.  And it’s hard to try to put all the pieces together and realize that certain things (like that annoying rash over your cheeks) can actually be a symptom of a serious condition.  But now, thanks to a new public education campaign, this might change.  I’m so excited to see this campaign.  Not only is it important to make people (especially women) aware of lupus for their own health, but personally, I love the idea of increased awareness of lupus in general.

As I worked these past few months to sort through and deal with my health problems, I realized a couple of things.  One, I was hesitant to talk about my health (for a variety of reasons) and two, when I did talk about it, most people, even if they had heard of lupus, had no idea what it actually was (or even just auto-immune in general).

I was hesitant to talk about my health issues in part because I didn’t want it to affect the way people viewed me at work (and really, who wants to be that girl in the office whining about being sick all the time?).  I didn’t want people to shy away from giving me projects or take me out of projects because they were worried about if I could handle it or because of other similar concerns.  So far, that has not been the case, and I hope it stays that way.  The other reason I was hesitant though, was because in some ways, I was almost embarrassed.  Embarrassed isn’t quite the right word, but it’s all I can come up with to describe.  I think part of the problem was that lupus and similar auto-immune conditions almost seem like something that kept “hush-hush”, not conditions to be discussed with the world at large.  I know though, that there is NOTHING to be embarrassed about.  But I don’t think that it’s uncommon for those with chronic illness to feel a bit ashamed about their conditions, despite there being no reason.  I did find that the more I talked about my health and the problems associated with a flare up, the easier it was to share more.  But  there’s almost a line.  I don’t want pity.  I do want understanding, and I do appreciate concern.  I don’t want to be treated any differently.  I want people to bed educated, and understand (to the point they can).  With lupus being such an unknown though, most really don’t.  I don’t want people to think I’m making excuses, to wonder why some days I seem good but others, I look like I got hit by a truck or I move slow or I have to sleep and am not in the office until late.

This is where I think a public education campaign can help.  While I really hope that this government campaign (in conjunction with the Lupus Foundation of America) makes an impact quickly, I realize more and more that those of us with lupus have a role to play in this education campaign too.  I do think that by talking about lupus more, and our struggles with it, that we put a face to the disease.  By putting a face to it to friends, family and coworkers, it makes it real, makes them realize that this is a health problem that doesn’t just affect “other” people (or in some cases, makes them aware that there even is such a thing as lupus).  I’m still not 100% comfortable with talking about it, but I’m getting better.  And talking about it had an added bonus for me, as in talking to friends, I was able to make connections with others who share the same struggles and issues, and at that time (and now) talking with them turned out to be exactly what I needed to help me deal with it all on an emotional level.

So please share the information about the new public awareness campaign.  Information is available at: http://couldihavelupus.gov or through the

Diet and Pain March 22, 2009

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…)

Fear of the Unknown March 18, 2009

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.

The Spoon Theory March 10, 2009

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