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…

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.

 

Statue or Bird May 19, 2009

Filed under: Flare,Misc — jwz1978 @ 8:09 pm

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.

 

Diet and Pain March 22, 2009

Filed under: Diet,Fibromyalgia,Flare,lupus,Natural,Organic — jwz1978 @ 5:32 pm
Tags: , , ,

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…)

 

Prednisone me… March 11, 2009

Filed under: Drugs,Flare,Medicines,Questions — jwz1978 @ 7:55 pm

While I was thinking about medicines and long term therapy, I thought I’d ask another related question about prednisone.  I started a prednisone burst just over three weeks ago.  20 mg made a quick difference in bringing up the energy level, dramatically.  The pain was improved, at least for a few days.  Then randomly (or so it seems), the pain kicked back in, but different in some ways.  It was more the muscles, not just the joints.  A switch to Ultram ER helped, and the week I was at 15 mg was the best I’ve had in so long.  I even managed to be social over that weekend and stay up late(r)!  But last week I went down to 10 mg, and within two days, the body was letting it be known that it didn’t like it.  Major fatigue again and the pain just ratcheted back up, to where I was doing the Ultram and several doses of Relafen and still not feeling much relief.  I talked to the rheum, who told me not to drop down to 5 mg this week and to stay at 10 mg until my Monday appt.  So now I’m left wondering what next?  What are other options for treatment if lower dosages of prednisone don’t seem to help? The other times I’ve done prednisone bursts, I didn’t have this problem at all, so that sort of worries me too, but it’s been probably close to 10 years since I’ve had to do a burst.  It’s so frustrating (what isn’t with these things), but I was really starting to feel better, really feeling hopeful about things improving, and it sort of felt like the rug was pulled back out from under me.

Does this happen often with prednisone bursts, where you see improvements in your symptoms but then hit the halfway point or so and see it start to go the opposite direction?

 

Fibro or Lupus?

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!

 

Admitting I can’t do it all… March 8, 2009

Filed under: Flare,FMLA,Misc,work — jwz1978 @ 8:22 pm

Friday was probably one of the hardest days I’ve had emotionally dealing with my health.  I had to admit, to myself and to others, that I just couldn’t, and haven’t, been able to keep up.  Anyone who lives and dies by the billable hour knows that once you get yourself in a whole, it’s hard to dig yourself out of it, even if you’re feeling particularly healthy.  Since my flareup started in November or so, I’ve had a huge drop in productivity.  It’s amazing how fast it all adds up.  Arriving at work later and leaving earlier.  Not working nights or weekends and just sleeping.  Less productivity even at work because I’m so tired or in so much pain it’s hard to focus.

Unfortunately, the drop in productivity and work is just one more stress and one more thing to worry about.  On Friday I had to sit down with two partners and talk, try to figure it all out and figure out what I needed to do.  The first time I had a flareup, when I was diagnosed, I was in college.  It was a whole lot easier to manage when in school than when working.  I could work with professors, had a much more flexible schedule, it wasn’t a piece of cake, but it was easier.  Later flares, when I was working before I went to law school, were harder, but still easier.  I had a job with a lot less pressure and many fewer demands.  Now, the fact I’ve chosen such a stressful, demanding, time-consuming career is an added challenge.

In the end, I had to call and talk to someone in our main office and start the process of working with HR, getting medical/physician forms filled out, and getting a paper trail on this.  The partners were very good about it all, stressing we needed to get it sorted out for my benefit, and making it less of a concern for me.  That however, didn’t make it easier for me to accept.  All my life I’ve been a total overachiever.  Involved in everything, volunteering for everything, generally trying to do it all.  And for the most part, I’ve done it, or at least managed to keep up.  After my call to HR on Friday, I sat there in my office and just lost it.  In fact thinking about it makes me start to tear up again.  Luckily I have an office door, and no one tried to touch base with me until I managed to get myself under control and until the facial redness had relatively faded.  But it flat out just sucked.  I felt/feel like a total failure because I can’t manage my health, my job, my family, I just can’t manage.

In my head, I know that lupus and fibro, autoimmune diseases in general, aren’t something you can control.  I know that I can’t do it all, that in trying to do so I actually can make it worse.  Knowing that, and admitting that, are two different things though.  I’m fortunate that I have people who care, and a job that is going to work with me on this.  I just really, really, really hate the fact that it’s come to that.  I hate not being able to tell them, well, I was sick, I flared up, but now I’m over it and it’s all better.  Or, I’m flaring, but hey, I’m really almost done and by next month, I’ll be back to myself.  It’s the not knowing I hate.  One of the things I hate.

When I get the paperwork from HR, I’ll be taking it to my doctor or my specialist, depending on what it requires, and getting a doctor to sign and fill it out.  At this point,I really have no idea what that all entails.  It’s all a bit new, a bit scary.  And aside from the feeling like a failure, and hating having to admit that I can’t keep up, it bothers me too that now this is on my record.  I have no problem talking about my health problems, and the treatment and how I’m feeling, but I hate that this is now part of my employee file.  I think that comes from a lot of years of being in remission, and a lot of years of convincing myself I was ok.  I know that it could be a lot worse, and I think that’s what scares me a bit too, knowing how much this is affecting my life now, wondering what will happen if the next time I flare, whenever that may be (and assuming we finally get this one under control) it’s worse yet?

In the end, I came home Friday, and then totally lost it again when my wonderful husband took one look at me, gave me a hug, and asked me what was wrong.  It’s his first time dealing with me and lupus and all the effects, and he really is handling it all well.  And then I decided I needed to do something (other than hug my husband and my dog) to make myself feel better and made the massage appointment for Saturday.  🙂

That’s my vent for the week.  Again, I know, the logical part of me, that overall, I’m fortunate.  But, even “knowing” that, accepting the changes and limitations that my body is wanting to force on me is not an easy thing.  The emotional side of me is back to the kicking and screaming and whining phase (at least internally, and now thanks to the internet, on this blog). I’ll probably never accept it, but at least now I guess I’ve started a process on the professional side that will let me deal with whatever my archenemy the wolf decides to throw my way.

 

Sending up a flare… March 6, 2009

Filed under: Flare — jwz1978 @ 8:39 am
Tags: , , ,

One of the things that both amazes and frustrates me most about lupus is the randomness of flares.  Over the years I’ve noticed that there commonalities between my flares, yet each is totally different.  My best guess is that this current one started back maybe November or December and built up a full head of steam before I finally started doing anything to address it other than sleeping and Tylenol and blaming stress.

For me, a “flare” (or at least this particular one) consists of pain.  Not just aches and stiffness, those are commonplace anymore, but P-A-I-N, literally from head to toe.  My toes will hurt, up to the roots of my hair, and everything in between.  And then there’s the fatigue.  The absolute, bone-weary, how-in-the-world-can-I-function, fatigue.  I think that’s one of the hardest things to explain to others.  It’s more than just being tired, it’s more than just not wanting to get up in the morning.  It’s having to lay in bed after the alarm goes off in the morning and think about each part of my body and try to wake it up, just a little.  To even just lift my arm feels like it takes superhuman strength and energy.  Those are the two problems that impact daily life the most.  The rest of the flare symptoms seem to just made it all a bit harder to deal with.  The mouth sores, the brain fog, the inability to sleep (which is just unreal considering how tired I am), the swelling, etc etc etc.  Then there’s the impact on daily life and the emotional strain that goes along with that  I’ve been back on meds for about a month now, and even since then, I have good days and bad days.  Just when I’ve had a couple days of improvement and things are feeling better, I wake up the next morning, and I hurt so bad I don’t want to move.  Yet somehow, albeit slowly, the day goes forward and I attempt to go with it.

I’m always looking to try to figure out the signs the body is sending, and hearing about other sufferer’s flares and symptoms helps try to put some pieces together.  For me, one dead give away sign that I need to slow down is that I get a mouth sore.  Usually along the gum line, but that’s the main way my body sends me the signal telling me that something’s not right.  I think there are a lot of symptoms and other issues that are precursors to my flares, or signs, or warnings of the impending doom, but that I either don’t notice them anymore or don’t link them.  That’s something I’ve found interesting in the reading I’ve been doing and in talking to others, and I’m always interested in hearing from others…