Sunday, June 14, 2009

Reality Sets In And The Odds Are Overwhelming

The reality of illness is hard to deal with. Time and again, there is something that will happen that sets off a cycle of crazy thoughts, thoughts that make illness real for me in a way that shouldn’t necessarily matter at this point.

Lab Work

My doctor e-mailed me on Friday to say that all of my tests came back within the normal range. So “we” proceed with “low dose” prednisone on flare days, and see how that works, along with my current medication regimen. You know, normal lab results should put me over the moon. But the truth is, it’s a mixed blessing – normal lab results, but still not feeling great – what’s going on?

So here’s a question. Do regular lab results mean remission? I mean, forgive me for being na├»ve, but I thought remission would come with bells and whistles, or a celebration of some sort. Like I’d shake my rheumatologist’s hand, maybe even give him a hug for doing such a good job, and I’d walk out the door, never to be seen or heard from in the rheumatology clinic ever again. I know remission doesn’t mean “cured,” but I thought it at least meant so little disease activity that you don’t even know you’re sick – not normal lab results, but still feeling like shit. I guess I’m living in a fantasy world of my own making. But I guess that could be said for a lot of things in my life these days…

I’ve become very visual lately. I need drawings, schematics. I need to see it to believe it! So I’ve created this table. There are four possible combinations when it comes to the way one feels and the corresponding lab results.

I think it’s pretty self-explanatory. And I think it’s totally true.


I’m pretty faithful when it comes to taking my medication, but recently I’ve started to feel overwhelmed. All four of my daily medications came up for refill at the same time, plus the addition of prednisone. So I got five prescriptions filled all at once, several of which had changed dosage or companies (Cellcept is now available as a generic, which makes my wallet happy). So as I filled in my weekly medication thingy, I felt overwhelmed for the first time in a while. Which pill is this? How many of this pill do I need to take? But the truth is, this should not overwhelm me. I’ve been adding and subtracting meds since the very beginning. But now with the daily count at eight different medications, it’s a little daunting.

And to my chagrin, as recent events have proven, prednisone, for all of its many, many flaws, really does work. I was pretty much able to recover from my most recent flare in about four hours, which is a vast improvement from four days. I do seriously hope, though, that it does not become an everyday thing, because with everything going on in my life right now, I can’t really afford the food cravings, cystic acne, moon face, and generalized bitchiness that comes with the territory.

Plus, I’m pretty sure that from the combination of spending several hours at the hospital on Wednesday, and several rides on the city bus on both Wednesday and Thursday, I’ve managed to pick up some kind of cough/cold/throat thing. Hopefully it won’t last too long, although it seems to be getting worse by the minute, which probably means an impromptu trip to the doctor. But with a whacked out immune system, so it goes…

Support Group

This illness stuff can be confusing and draining, and sometimes, we need others to help us deal. While I have found blogging to be incredibly helpful, I definitely think there is something to be said for a little old-fashioned, in-person communication. I recently found out about a support group that meets once a month around a 15-minute drive from where I live. Since I don’t drive, getting there was an adventure for me (but that’s a whole other story).

When I was feeling better, the thought of a support group wasn’t as daunting. I felt I’d be able to handle it better emotionally, maybe because I do tend to have lots of emotional ups and downs when I’m flaring. I didn’t want to have that “deer in the headlights” look that I did when I went to my first rheumatologist appointment. I guess as far as illness in concerned, I have come to associate any new experiences with fear and dread.

I contemplated not going to the support group – only a select few others and I would have known my failure to “woman up.” I was fully prepared to chicken out. Going to a support group, meeting other people with lupus, in the flesh, makes everything real – maybe even a little too real. To go to a support group and admit that I have this illness (and others), and that I need support, was something that I really didn’t feel prepared to do. So I bribed myself with a trip to the mall (which was on the way) beforehand, and I bit the bullet.

Ultimately, while I was scared and uncomfortable at first, it was incredibly valuable. I was worried that I would be the youngest one there, as I usually am in the waiting room of the rheumatology clinic. But there was a fairly good spread despite the small crowd; a 15-year old and her mom, a 20/30-something and her boyfriend, me, a 30-something, and a 50/60 year old – all female sufferers.

We swapped war stories about blood draws gone bad and prednisone craziness. It didn’t feel like a competition, and it didn’t feel like a pity party, either. It felt like a safe space to share and learn. And it’s something that I really needed to do for myself, and I would recommend it to others, if you can find a support group in your area.

Owning up to illness is not an easy thing to do, especially in the presence of people who know exactly what you’re going through. It’s easy to tell half stories and sugarcoat things for people who don’t have a clue. And because they don’t have a clue, you don’t have to feel beholden to heed their advice. But when people who have lupus give you advice, they know what they’re talking about…


All of this is to say that being chronically ill calls for constant management and surveillance. With this latest edition of prednisone, I’m really being put in the driver’s seat. And if it seems to work to combat flares, I really have to make a concentrated effort to take it on the bad days, even if I don’t really want to.

And sometimes I have to put productivity aside in favor of catching up on rest. I pretty much was non-stop on Friday, so in reality, the fact that I flared Saturday should not have been such a shocker to me. And the truth is, if I don’t do the best I can to manage things, I’m going to be sick the majority of the time, and that’s no fun for anyone involved.


Also, I feel like I have to give a shout out to all of my wonderful readers. There are many of you now, and I feel very lucky and humble to have so many people who keep up with my blog. With teaching my own class and flaring (that’s a loaded combination right there), I haven’t been posting as much as I used to, but you have continued to read, despite my absence. And there are so many comments coming in lately that it’s hard for me to keep up. I’m not complaining. I love it. Keep it coming! And thanks for letting me share my journey with you!


  1. I've been meaning to buy a pill organizer. I only take 2 pills a day (rx at least) and some vitamins. However, my memory is wacky enough these days that I have moments where i'm ust not sure i've taken it.

  2. I came upon your blog via invisible illness and I absolutely love your sense of humor and approach to dealing with illness. Chronic illness is horrid to handle some days-especially when it involves pain. I have terrible pain and if I could control that I could cope with everything else. I look forward to visiting your site often.

    Take care and hope the flares stay to a minimum!


  3. I have been diagnosed with SLE for 30 years this August. I was blessed to have a nephrologist at the outset who would tell me that the patient can often feel awful because of problems that are subclinical (ie - not measurable by current testing) - and he told me over and over again that the symptoms I was feeling _were_ real even tho they did not measure on any tests.

    Somehow that really reassured me, and helped me to rely on my own perceptions.

    Blessings to you.