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
Tags: ,

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

 

Survey: Managing Chronic Diseases May 18, 2009

Filed under: Education,Misc — jwz1978 @ 6:24 pm

Today I started reading RA Guy, and one post in particular caught my eye.   It was a link to a study regarding obstacles those with chronic illnesses face.  The definition of chronic illness is very inclusive.  Needless to say, my interest was piqued, and I decided to check out the survey.  It’s on the longer side, but well worth the time (and you don’t have to do it all at once either).  Your input can make a difference.  Consider sharing your thoughts and experiences.  The information below is about the study and includes the link.   Also, it’s not just for those with chronic diseases, but for caregivers as well.

Advocacy for Patients with Chronic Illness, Inc. and the University of Michigan Center for Managing Chronic Disease have been awarded a grant by the National Institutes of Health (NIH) to study the obstacles facing the chronically ill and caregivers, interventions that do and do not work to surmount those obstacles, and ways in which the work done by the NIH, including research and clinical trials, may be helpful to patients with chronic illnesses. With the help of twelve patients and caregivers, we have drafted a survey which is available online at:

http://chronicdisease.survey.sgizmo.com .

If you have a chronic illness such as Crohn’s disease, ulcerative colitis, rheumatoid arthritis, fibromyalgia, multiple sclerosis, immune deficiency, or other chronic illness or are a caregiver of someone with a chronic illness, are at least 18 years old, and would like to take the survey, please do so. If, for any reason, you are unable to take the survey online, or you would prefer to be interviewed by telephone, or if you have any questions at all about the research, please contact Jennifer Jaff at (860) 674-1370. She will answer any questions you may have, provide more details about the study and arrange for an interviewer to call you to schedule the telephone interview at a time convenient to you. Any services you or the person you care for may receive from Advocacy for Patients will not be affected by your participation or decision to not participate.

 

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

 

Could I Have Lupus? April 1, 2009

Filed under: Education,lupus,Lupus Foundation — jwz1978 @ 9:37 pm
Tags: ,

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