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…

Midrin – an update February 1, 2011

Filed under: Drugs,Medicines — jwz1978 @ 1:32 pm

When I first started suffering from migraines several years ago, Midrin was one of the only drugs I found that helped ease my migraines and headaches.  I’ve been able to wean down most of my use of it over the past two years, particularly with dietary changes, but always thought it was there if I needed it…little did I know, I was wrong.  I used the last of my stash back in December.  Sounds like I might be out of luck should I want a refill.  For more information on what I’m talking about, check out this interesting post today from Teri over on migraine.com

This is something I need to start paying more attention to.  While I’m not on it currently and didn’t have plans to try to get a refill at the moment, I’m now left here to worry about what happens next should I need one?!

 

Sun Protection August 8, 2010

Filed under: lupus,Skin care — jwz1978 @ 11:48 am

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

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

 

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

 

All You Need Is Love… August 20, 2009

Filed under: Entertainment,Misc — jwz1978 @ 9:18 pm
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This week my husband and I celebrated our second anniversary.  It’s hard to believe it’s been two years already, yet it also seems like we’ve been married so much longer!  I am so fortunate to be married to a wonderful guy.  Not to say he doesn’t drive me nuts some days (and vice versa I know) but he is so thoughtful and caring that those crazy moments are almost instantly forgotten.  Through this past year, with its various health challenges, he’s been so patient, as understanding as he can be, and helpful.  This was all totally foreign to him when the flares kicked up this year, and he just rolled with it, helped where he could, hugged me when I cried, and took wonderful care of me when I needed it.  I’m so fortunate to have him in my life.  We are headed out to vacation for a week in the beautiful desert area of Sedona and the Grand Canyon, our first vacation really since our honeymoon.  It will be so nice to get away, with just J, to relax and spend time together without all the pressure and stuff that goes on at home.  I’m hoping that some time away from the stress of work and life will help me health-wise, but it is going to be wonderful for the two of us to have that time together too.

While maybe love isn’t all you need to get by, I have to say that it certainly makes a girl happier and I think healthier.  So Happy Anniversary to my wonderful husband, with high hopes for a restoring, rejuvenating, relaxing holiday away🙂

 

Books Books Books August 15, 2009

Filed under: Entertainment — jwz1978 @ 7:00 pm
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With just  a few exceptions, there is little I love more in this world than books.  Whatever the genre, if it entertains me, I’m happy.  With that in mind, it was fun to run across this posting on The Princess’s blog today.  I just found it today since I’m so behind on my google reader, but I thought I’d share it here (copied in part) since it’s a list of BOOKS! Yea Books!  I have a long list now to start downloading to the Kindle…

The list is from The Times Online and is the Top 60 Books of the Last 60 Years. I’ve bolded the ones I’ve read. Any of your favorites on the list?  Any that I need to download RIGHTNOW?  One of my all time favorites is The Lion, The Witch and the Wardrobe.  I have the whole series and every couple of years I re-read them, and enjoy them like it’s the first time!  As you can see, I have a long way to go to complete this list.  I’ll probably try a few off here and see what I think.  I find I generally don’t always enjoy the books that end up on lists like these.  But, it’s a good opportunity to try a new author, read a classic, expand the circle of books I surround myself with.  Happy reading!

1949 Nineteen Eighty-Four George Orwell
1950 The Lion, the Witch and the Wardrobe C. S. Lewis
1951 The Catcher in the Rye J. D. Salinger
1952 Pigs Have Wings P. G. Wodehouse
1953 Casino Royale Ian Fleming
1954 Lord of the Flies William Golding
1955 Lolita Vladimir Nabokov
1956 The Hundred and One Dalmatians Dodie Smith
1957 Doctor ZhivagoBoris Pasternak
1958 Our Man in Havana Graham Greene
1959 The Leopard Giuseppe di Lampedusa
1960 To Kill a Mockingbird Harper Lee
1961 Catch 22 Joseph Heller
1962 The Golden Notebook Doris Lessing
1963 The Bell Jar Sylvia Plath
1964 Funeral in Berlin Len Deighton
1965 Dune Frank Herbert
1966 Wide Sargasso Sea Jean Rhys
1967 Towards the End of the Morning Michael Frayn
1968 2001 Arthur C. Clarke
1969 The French Lieutenant’s Woman John Fowles
1970 Play it as it Lays Joan Didion
1971 Americana Don DeLillo
1972 Watership Down Richard Adams
1973 Crash J. G. Ballard
1974 Fear of Flying Erica Jong
1975 Salem’s Lot Stephen King
1976 Even Cowgirls get the Blues Tom Robbins
1977 A Scanner Darkly Philip K. Dick
1978 The World According to Garp John Irving
1979 Smiley’s People John le Carré
1980 Earthly Powers Anthony Burgess
1981 Lanark Alasdair Gray
1982 The House of the Spirits Isabel Allende
1983 Waterland Graham Swift
1984 Money Martin Amis
1985 Love in The Time of Cholera Gabriel Garcia Marquez
1986 Tourist Season Carl Hiaasen
1987 More Die of Heartbreak Saul Bellow
1988 Mother London Michael Moorcock
1989 Sexing the Cherry Jeannette Winterson
1990 Get Shorty Elmore Leonard
1991 The Famished Road Ben Okri
1992 The Secret History Donna Tartt
1993 Trainspotting Irvine Welsh
1994 How Late it Was, How Late James Kelman
1995 Northern Lights Philip Pullman
1996Angela’s AshesFrank McCourt
1997 Harry Potter and the Philosopher’s Stone J. K. Rowling
1998 The Wind-up Bird Chronicle Haruki Murakami
1999 Disgrace J. M. Coetzee
2000 The Blind Assassin Margaret Atwood
2001 The Corrections Jonathan Franzen
2002 Atonement Ian McEwan (already on my to-read list, might have to move it up now…)
2003 The Time Traveler’s Wife Audrey Niffenegger (I’m taking this one on vacation with me next week, so I’m preemptively bolding it!)
2004 The Line of Beauty Alan Hollinghurst
2005 Twilight Stephenie Meyer
2006 The Road Cormac McCarthy
2007 A Thousand Splendid Suns Khaled Hosseini
2008 Netherland Joseph O’Neill
2009 The Little Stranger Sarah Waters

 

 
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