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…

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


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.