All You Need Is Love… August 20, 2009

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

Out of sight, out of mind June 10, 2009

So I’ve found I’ve been very neglectful of this blog these past few months.  It’s due to a variety of factors, some good some probably not so good.  I’ve been spending a lot less time on the computer, and I can’t decide if that is due to me feeling better and being able to work on other projects, or me just being tired of the computer screen.  Probably a bit of both if I’m honest.  I find myself wanting to avoid the computer after I get home from work and on weekends anymore.

At the same time, I’ve felt sort of blah lately, and just can’t work of the energy to think of anything interesting to write about. I figure if I don’t want to read it, no one else would either.  So instead, the blog just sits here, collecting imaginary Internet dust.  At the same time I’m not writing mine, i’ve also fallen behind on my blog reading, which bothers me more too.  I learn so much from reading other’s blogs, even just their experiences dealing with similar problems or issues of life.

I’d like to get back into writing.  I like to write, I love expressing myself in written form.  That being said, I’m not real optimistic about improving on the writing.  I think I need to rethink topics in general, maybe expand my mindset a bit more.  Figuring out how to post from the blackberry would help too, I need to work on that.

So that’s the status now and update.  I’m going to make more of an effort and ponder topics (suggestions always considered .

Acupuncture Today May 20, 2009

Today was round 6 of the acupuncture.  Each time I go, I’m a bit more convinced to keep going.  These past few visits we’ve done all the work on the back, which for some reason just relaxes me so much more.  I doze off every time.  I still find it odd that I can do that, but it’s wonderful to have that absolute reaction, even if just for a short while.  My muscles that are normally so tight and tense just seem to let go.  I think I need to do some more reading up on acupuncture to get a better understanding of how all this works, because it just fascinates me.

I’m still trying to sort out how I feel longer term after a treatment.  I know that I’m parched after each one, like all the water has been sucked out of me.  Today I took down a vitamin water in about 2 minutes while I was making lunch, and the same water craving has continued all day.  The rest of me feels pretty good, but today I’ve had some “head” issues afterwards, that I don’t think I can claim/blame on the acupuncture.  Lightheaded, nagging headache, that sort of stuff.  So we’ll see how tomorrow goes.

Even though I’m not at this point noticing huge long term benefits, I’m feeling so much better overall with all the changes, including the acupuncture, that I’m sticking with it.  I think it fits in well with my more holistic view of my health plan, so two weeks from now, I’ll be back again, looking forward to one of the few occassions I get to take a nap in the middle of the day

My Life Works Today May 20, 2009

I had the honor of being asked by Maria over at My Life Works Today to be today’s guest blogger.  It’s a wonderful site and a great web resource that I highly recommend checking out.  There have been a series of guest bloggers throughout the month, all with wonderful and unique perspectives and views of dealing with chronic illness.  Thanks, Maria, for the opportunity to be a part of My Life Works Today, and welcome to those who wander over this way for the first time.

Statue or Bird May 19, 2009

Today was one of those days where it felt like everything I did took that much extra effort.  Why today is the part I don’t get.  I slept the same, if not better, than the past few nights.  I didn’t have that hard a Monday or weekend.  Couldn’t think of anything I’d had to eat that would set me off.  Yet from the moment the alarm went off this morning, I could just tell.  The effort to wake up.  The effort to get ready, taking much longer than normal.  And throughout the day, it just continued down that same path.  I made it through the calls at work and the odds and ends, but I just didn’t feel productive.  I’m finishing up a few things tonight, and it is the same.  In addition to the fact I must have had some wheat in with dinner without knowing that brought on a headache, I’m ready for this day to end.

Days like this just bring me down.  I’m tired.  I hurt. I get cranky.  I know that it’s just because it’s one of those days, but you know what, I HATE these days.  I was working up a good funk earlier today after dealing with some work issues, when I was on Twitter and saw a post someone had made that seemed to fit today.  It gave me a good chuckle, and seemed to fit both how the day was going for me all around.

“Accept that some days you’re the pigeon & some days you’re the statue”

Today, I’m a statue.  Tomorrow, I’m aiming to be the bird.

Trying to find a background May 19, 2009

I played around with the “themes” available to me from wordpress last night trying to find one that I liked.  This was the best I could come up with, although I’m not a huge fan.  Odds are you might see a few changes in the theme over the next few days if I find out a good source for wordpress themes!

Survey: Managing Chronic Diseases May 18, 2009

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.

Time Flies By… May 15, 2009

I can’t believe that it is already May 15th.  The month has flown by, and not necessarily in a good way.  It also made me note that it’s been way too long since I’ve written or posted anything.  I missed National Fibromyalgia Awareness Day even, an error that will be remedied soon.  I’ve worked pretty much non stop the past month.  Nights, weekends, days, travel to the home office for annual meetings, and it’s starting to take it’s toll on me.  The more stressed and more tired I get, the more I hurt (although the rainy days haven’t helped that at all).  By the end of the week, it’s rough.  I need to do this for one more solid week.  Then, without (too much) guilt, I plan to take off the entire Memorial Day weekend.  If I don’t, I’m afraid I’m going to drive myself right into another flare, which is something that I can’t afford to do.

The good part about all of this, is that while there are downsides and I’m tired, sore and relatively cranky half the time, I’ve been able to push through and get a lot of this work done.  That’s a huge sign of improvement from how I was feeling back earlier this year.  If I’d had these types of work demands back in January and February, I don’t know what I would have done.  There was no ability to just push through and deal back then.  I think that has a lot to do with the more proactive than reactive approach to my health I’ve tried to take since this last prednisone burst.  Between the dietary changes, the supplements, the acupuncture, getting off the pill, I’ve noticed a marked improvement in the overall way I feel these past 4-6 weeks or so.  Am I great?  Heck no.  But, I’m not miserable, I’m not curled up sleeping on the couch the moment I get home or crying from the pain, and I’m able to feel like I can be fun again.  My hope is this lasts.  I know that it won’t, but right now, my goal is just to not get as bad as it was before.  I think that’s doable.

The dowside I’ve noticed these past few weeks is that I still don’t know how to deal with the demands my body puts on me and the demands of work.  Some of the people I work with now who are setting some of these work demands know and are aware of what I’m dealing with.  And one asks me often how I’m doing.  I also say “ok” or “managing”.  I don’t want to say that I worry I’m on the verge, or that I need about three days to sleep, because I know everyone else working on this project is dealing with sleepless night and crazy hours too.  And I don’t want to be the one who is slacking and causing problems for everyone else.  Yet, at the same time, I know that in some ways I’m just not like everyone else and at some point, before it’s too late, I’m going to have to do something.  I’m hoping that by taking a long weekend and relaxing next weekend, I can put that off a bit longer and keep pushing through.

With that, I’m off to my physical therapy on the old rib cage.   Much improved, so I’m sure I’m about done with the PT.  Another positive.  I’m keeping track of those to help remind myself how many there really are and how lucky I am.

Words to live by April 30, 2009

Let me not beg for the stilling of my pain,but for the heart to conquer it.” ~ Shantideva

Another week April 21, 2009

I realized today that I just didn’t feel like I had anything worthwhile to write about this week so far.  But, I still felt like writing (I get that way sometimes, I just like to write) so I thought I’d just take advantage of the fact this is my blog and sort of just prattle on for a bit.  I’m tired, and stressed with work and the craziness of the week hasn’t even really started.  It’s going to be a couple long months, where I”m just not sure that I’ll manage to meet all the demands and deadlines and stretch all the different directions I’m being pulled. That, and I totally feel like I’m failing at home now, not spending enough time doing what needs to be done around the house or just good quality time with my husband.   Times like this where I’m crazy busy, traveling, and what else make me appreciate his World of Warcraft addiction (as compared to the times I want his attention, ha!).

On the positive side, the ribs are improving with PT, I don’t have the “take away your breath” pain any more, just more discomfort and a few twinges.  And so far I’ve been, I think, pretty good about the gluten-free diet, with the exception of Saturday.  Taking that day off though wasn’t all bad as it did hit home that there are some definite differences in how I feel when I eat wheat.  These next few days will be my first real test with it while traveling, so it should be interesting.

Tomorrow I hit the dentist, PT, and the acupuncturist, work, and then drive 3 hours so I can attend a conference for work Thursday 1/2 a day.  After that, it’s more work, and then a late flight to MI for a family funeral service on Friday.  While not the best of circumstances for a family gathering, I’m so looking forward to seeing my parents and my brother and the rest of the family.  I haven’t seen my brother since last summer, or my parents since Thanksgiving, it’s past time.  And I know my mom’s been so worried about me these past few months, I think just getting a chance to see me herself and fuss for a bit is going to make us both feel better.  Short trip though, as it’s a flight and drive back on Saturday to make it to a law school dinner.  To sum: a busy few days.  I’m hoping that it doesn’t wipe me out too much. I’m already feeling low on spoons, I’m hoping that this doesn’t put me in the whole.