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…

2010 Des Moines Arthritis Walk May 19, 2010

Filed under: Fibromyalgia,fundaising,lupus,walk — jwz1978 @ 5:42 pm

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

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Changing Seasons, Changing Health October 22, 2009

Filed under: Fibromyalgia,Flare,Medicines — jwz1978 @ 8:01 pm
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Ah, welcome to fall.  Falling temps.  Rising temps.  Rain. Snow. Sun.  One day to the next, no idea what the weather might hold.  Isn’t that just a joy.

The truth is, I love fall.  I really do.  Sweatshirts and football, always fun.  What’s not fun is how my body reacts to the fall.  I’ve always had some sort of reaction to fall.  I don’t know if it’s the weather, or if it is the change in the light cycles, but something always hits me.  This year it’s been worse than it has been the past few years.  I think it’s because this year I’m still trying to build my way back up from where I ended up this past winter after the flares.  I started off the season not feeling quite as good as I have these past few fall seasons.  On top of that, I had a crazy couple of weeks with work (long hours, increased stress) preparing for a trial that just came to an end.  I powered through on adrenalin (love that hormone) but then crashed.  Back on pain meds, sleep issues, tension, stiffness…ah yes, I love fall 🙂

The good part is that this year, I have some extra tools to deal with this.  I’m going to get back to taking my supplements (I’ve been bad), I’ve got the gluten-free diet (need to work on sticking with that), I’ve got the acupuncture and the chiropractic appointments, massage appointments at least monthly, and although I hate to use them, I have my pain meds.  I’m learning that taking them is not a sign of weakness.

So bring on the rest of the fall season.  I’m ready to work with the season, instead of letting it take control.

 

30 things about my illness… September 2, 2009

Filed under: Education,Fibromyalgia — jwz1978 @ 11:59 pm
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September 14-20 is Invisible Illness Awareness Week.  As part of that week, I’m adding my thoughts to this “about me” list of questions.  I recommend both doing one yourself and checking out the others.  Invisible illnesses affect more people than most realize, and often people suffer silently (for a variety of reasons).  Share your thoughts and read the insights of others, it’s worth your time.  (And if you do fill one out yourself, do so by September 5th, post your link here, and you are entered in the prize drawing as well!)

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Fibromyalgia
2. I was diagnosed with it in the year: 1998
3. But I had symptoms since: at least 1993, when I first was diagnosed with mono but never seemed to quite recover
4. The biggest adjustment I’ve had to make is: accepting that I can’t always do everything I want to do or everything that everyone else wants me to, and acknowledging that when I forget that, there are consequences to pay
5. Most people assume: that I’m fine because I don’t “look” sick or that I can’t really feel that different one day to the next
6. The hardest part about mornings are: waking up exhausted, yet knowing that even if you did sleep all day, you’d still feel just as tired, just as sore
7. My favorite medical TV show is: I don’t watch any of the current ones, but loved Doogie Howser, M.D. 🙂
8. A gadget I couldn’t live without is: my blackberry and the calendar function…without it I wouldn’t make half my appts/phone calls/meetings or anything! My brain requires reminders, always
9. The hardest part about nights are: going to bed thinking about all the things I didn’t manage to get done because I just couldn’t find the energy to get to it, whether they be necessary tasks for just for fun
10. Each day I take 26-30 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: believe they are a tool to help me manage at the highest level I can, whatever that might be
12. If I had to choose between an invisible illness or visible I would choose: invisible.  This one took some debate, but it makes me part of who I am, and that I don’t think I’d want to change.  For better or worse, invisible illness both weakens and strengthens me.
13. Regarding working and career: A year ago I would have said little to no impact.  When things were good, little to no impact on my daily, high stress, busy career, but since a major flare almost a year ago, I’ve had to reevaluate that statement and say that there is no doubt an impact, but that if you are open and honest about your limitations and your health with those that need to be informed that it is possible to have a career.  It’s not easy, and I’m often frustrated with myself and my body, but I’m managing, if not truly succeeding in that managing.
14. People would be surprised to know: that I can’t remember the last time I had a day with no pain, no aches, no stiffness.  Not a day goes by that I don’t deal with this a majority of the day, even if I do find some relief, it’s temporary at best
15. The hardest thing to accept about my new reality has been: the fact I need to say no, to myself and to others…and learning that accepting it is one thing, implementing another
16. Something I never thought I could do with my illness that I did was: make it through 4 yrs of graduate school without any major flareups, despite all the stress and NOT taking good care of myself in many ways
17. The commercials about my illness: are good in that they are make the public aware that this is a disease, yet are frustrating in that they don’t reflect me or my reality
18. Something I really miss doing since I was diagnosed is: not thinking about my health or how I feel.  It’s amazing how much time that thinking about or dealing with health issues takes up
19. It was really hard to have to give up: parts of my diet that I loved and craved, such as coffee, pizza and breads (gluten) and ice cream…ok, I didn’t give them up very well, but I’ve severely limited my intake (most of the time) and when I’m very good about this part of my diet, especially coffee and gluten, I feel all the better for it and do notice a difference.
20. A new hobby I have taken up since my diagnosis is: sewing…can’t always do it when I’d like, whether from lack of energy or time or physical inability, but it’s a great hobby that I can work on in spurts, with a variety of tasks so that there’s usually some type of project I can work on even the days I can’t get off the couch and my fingers are clumsy.
21. If I could have one day of feeling normal again I would: wake up early, feeling refreshed, run with the dog, drink a big cup of coffee, organize my house, and throw a big party with lots of food, games and drinks, and then go to bed pleasantly tired (BUT NOT EXHAUSTED) and sleep soundly
22. My illness has taught me: to listen to my body, to try to prioritize and to learn to delegate areas that are not as important …as much as I feel like I should be, I cannot and do not need to be Superwoman and be able to do it all…instead I can do what’s most important and arrange for others to do the rest (like hiring someone to clean every two weeks!) 🙂
23. Want to know a secret? One thing people say that gets under my skin is: you’re just tired, if you take a nap you’ll be fine
24. But I love it when people: don’t try to set my limitations for me, but let me set my own as I need to
25. My favorite motto, scripture, quote that gets me through tough times is: I have several inspirational quotes I love, but really, I have two basic mottos: “For every hill there is a valley” and “It could always be worse”.  The first reminds me that when things are bad, they will get better and to keep working towards that hill.  The second is my mantra.  It keeps me appreciating that while I’m sick, while there are things I can’t do, while I get frustrated and angry and all these other things, that really, I’m pretty lucky.  While I have ups or downs, I still have ups.  And I have people that love and support me.  Overall, I’m lucky, and I need to remind myself of that.
26. When someone is diagnosed I’d like to tell them: talk to others, but really listen to yourself and find support in a way that is meaningful to you.  It’s ok to be frustrated, angry, sad, etc., but that if you let those emotions rule, you let the disease win.  Acceptance isn’t easy and isn’t perfect.  And above all, learn to listen to yourself, your body has a million ways of talking to you, giving you signs of trouble ahead and helping you learn your limitations. 
27. Something that has surprised me about living with an illness is: how important a positive attitude can be to help you accomplish your goals, despite dealing with symptoms (and the amazing power of adrenalin to get you through deadlines before you crash!)
28. The nicest thing someone did for me when I wasn’t feeling well was: my husband, without being asked, taking on household chores I normally did and continuing to do them often even when I’m feeling better so I don’t have to worry about them as much; a friend, who despite dealing with health concerns of her own, listens to me complain, whine, and carry on in general, always offering support and just being there, even though miles away
29. I’m involved with Invisible Illness Week because: 1) this year I’ve realized what an amazing online community there is of others with invisible illnesses and I’m proud to be a member of that community and 2) that general awareness/education regarding invisible illness is much needed
30. The fact that you read this list makes me feel: gratitude that you read it to this point, and thankful that opportunities like this exist to help us express ourselves and share our thoughts about our illnesses

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

 

Resources May 17, 2009

Filed under: Education,Fibromyalgia — jwz1978 @ 2:42 pm

I haven’t had the time to check all these out yet, but this is a great list of resources for those looking for information on Chronic Fatigue Syndrome and Fibromyalgia.  I’m bookmarking it now so I can go back and click on each one at some point in the near future.  I’m so far behind on my blog reading already, but I think I need to add some more to the reading list.

Fighting Fatigue CFS/FMS Resources

 

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…)

 

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.

 

Fibro or Lupus? March 11, 2009

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!