Monday, September 28, 2009

Not Dead Yet

(For those who don't recognize it, the headline refers to a song by one of my favorite bands from the '90s: the Bad Examples.)

I have at least half a dozen blog posts that are half written but I can't seem to finish lately.

I wish I could say it was because I was feeling so great that I was busy doing lots of things with Ellie and Scott, but no.

School started Sept. 9, and within a couple days, Ellie and I were both sniffling and congested. She, of course, is over her cold, and I'm coping with a lingering sinus infection and a major pain flare.

Anyway, I wanted to poke me head up and let everyone know I'm still here, and I hope to get back to posting regularly soon.

Tuesday, September 8, 2009

Patients For a Moment!

The latest edition of Patients For A Moment takes a creative twist, thanks to Leslie at Getting Closer To Myself.

Leslie uses a Michael Jackson theme to introduce the various blogs written by, for and about patients. Whether you loved him or hated him, this blog carnival is not to be missed with some of the best contributions ever.

Monday, September 7, 2009

Permission Granted (Via Lengthy Rationalization)

When I got sick as a kid, I'd tell my mom my symptoms and how badly I felt in the hopes that she would decide whether or not I should stay home from school.

Essentially, I wanted permission. I didn't want to make the decision on my own, but from a fairly young age (I don't remember exactly how young but definitely starting before I got to junior high), my mom made me make the call myself.

And I would dither and go back and forth. It's hard to know right upon waking up whether feeling yucky would pass or get worse as the day went on. Sometimes my mom would lose patience with me and my wishywashiness over whether I was too sick to go to school or not. But mostly she would simply say something like, "Only you know how bad you feel, so only you can decide if you're so sick you need to stay home today."

Sometimes there was no choice. If I was running a fever or throwing up or something like that, clearly I couldn't go to school. But colds or tummy aches or, once I hit junior high and developed migraines, bad headaches, those were all something of a coin toss.

The consequence for staying home from school sick, though, meant that I wasn't allowed to do anything "fun" until I'd been back to school at least one day, even if I later decided I felt better. Which meant I'd try hard to drag myself to school on Fridays (or, once I had a part-time job, on a day I had a work shift) no matter how lousy I felt unless I was sure I'd be sick all weekend! :-)

Since I started the Prednisone taper and my pain levels skyrocketed, I've wavered on whether to talk pain meds. I'm not supposed to take ibuprofin because of my propensity for peptic ulcers caused by NSAIDs (and even the Prednisone irritated my stomach so it's probably a good thing the doctors made me taper off). Tylenol rarely helps my pain. I take Flexeril, a muscle relaxant, and I know it helps because I can feel the difference if I skip doses, but my pain has still been out of control.

But I haven't taken narcotic pain relievers since around Thanksgiving, when I went cold turkey to see if a neurologist was right that my fatigue was caused by my pain meds. She wasn't right, but it seemed like a good idea to resist going back on the pain meds just for philosophical reasons.

But lately, I've been passive-aggressive looking for someone to give me their blessing to take the edge off my pain with oxycodone. I told my internist that my pain was so bad lately that I'd taken to looking wishfully at the bottle of pain pills. She was unhappy to hear that, but didn't overtly give me the permission I thought I was hinting at but didn't outright ask for, which is silly because she told me all along that I wasn't addicted to the pain meds and it was OK to take them if I needed them.

I've cried to Scott about my pain levels, and he's supportive and sympathetic but clearly not a mind reader either.

On top of the usual aches and pains, my back and neck have been way worse than normal lately too. And I've been having really severe headaches daily lately that I thought were caused by my weird eye pain and odd vision but now that the ophthalmologist ruled out eye problems, I think it's the headaches causing the eye issues. And the Midrin I've been taking for headaches for a year or so doesn't even touch them lately. (Since the headaches have become a daily event, my internist had me start a daily drug that hopefully will cut down the frequency and severity. Hasn't kicked in yet, though, as far as I can tell.)

My sleep is affected because it's harder to fall asleep when pain is bad and I'm more likely to wake even more frequently than usual, which means I'm either extra tired on top of my normal high fatigue levels or I'm relying on Benedryl or Ambien to help me fall asleep and stay that way.

This weekend, I finally decided that, just like when I was a kid deciding whether I was too sick for school, only I could decide whether or not I needed pain meds.

So, approximately 9.5 months after the last time I took a narcotic painkiller, I took another one. And you know what, it helped. I think it's a reasonable thing to keep in my arsenal, especially if I only take them occasionally, which will keep them more potent on much smaller doses. I plan to limit my usage and not slip back into taking narcotics daily.

But being a martyr and suffering needlessly wasn't beneficial to anyone. So I gave myself permission to do something about it when it got too intense.

Saturday, September 5, 2009

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Still a mystery. But some of the diagnoses I've picked up along the way include asthma, many various allergies, hypothyroidism, dysautonomia, inappropriate sinus tachycardia, anemia, degenerative disk disease, neuropathy, migraines, optic neuritis, hypersomnia, monoclonal gammopathy of undetermined significance (MGUS), undifferentiated connective tissue autoimmune disease (UCTD).

2. I was diagnosed with it in the year: Again, I'm still waiting for an official diagnosis, but I became incapacitated due to invisible chronic illness in 2007.

3. But I had symptoms since childhood for some of my invisible illnesses and had chronic pain since a 1995 on-the-job injury that left me permanently partially disabled.

4. The biggest adjustment I’ve had to make is accepting that this is what life is like for now, even if I continue to hope it isn't going to be like this forever.

5. Most people assume I'm healthy because nothing that's wrong with me shows on the outside.

6. The hardest part about mornings are getting going and/or motivated.

7. My favorite medical TV show is Grey's Anatomy!

8. A gadget I couldn’t live without is my laptop. My quality of life improved so much once I could be online whenever I felt up to it without having to sit at my desk, which I can't do for very long most of the time.

9. The hardest part about nights are falling asleep. When I try to relax and fall asleep, there's no distraction from all my aches and pains. I have trouble getting my body comfortable enough to sleep, and then I wake up frequently.

10. Each day, I take at least 10 pills & vitamins. (No comments, please)

11. Regarding alternative treatments, I get acupuncture weekly.

12. If I had to choose between an invisible illness or visible I would choose invisible, I think, because at least I have a choice sometimes of hiding my illness and acting like I'm "normal" and healthy for at least a little while. Sure, I pay for it later, but sometimes it's good to be able to pretend.

13. Regarding working and career, I miss feeling like a productive member of society. I can't even honestly call myself a stay-at-home mom anymore since Ellie's in full-time care because I can't manage taking care of her on my own.

14. People would be surprised to know how much pain I'm in on a daily basis.

15. The hardest thing to accept about my new reality has been that it might not be temporary.

16. Something I never thought I could do with my illness that I did was have houseguests and entertain them adequately.

17. The commercials about my illness: n/a

18. Something I really miss doing since I was diagnosed is taking care of my daughter by myself, taking her on fun outings and really being a part of her life.

19. It was really hard to have to give up being Ellie's primary caregiver.

20. A new hobby I have taken up since my diagnosis is blogging! :-)

21. If I could have one day of feeling normal again I would ... oh, there's too many things for just one day! If I really can only have one day, I think I would spend it with Ellie and Scott at Disneyland, going on rides, enjoying Ellie's excitement and glee, not running out of energy way too quickly.

22. My illness has taught me to appreciate the little things.

23. Want to know a secret? One thing people say that gets under my skin is, "You look/sound great! You must be feeling a lot better!"

24. But I love it when people offer to do something that gives Scott a break from being both Ellie's and my caregiver, like inviting Ellie over for a long playdate or sending their teenager over to babysit for an afternoon.

25. My favorite motto, scripture, quote that gets me through tough times is "And this, too, shall pass."

26. When someone is diagnosed I’d like to tell them to find and/or create a support network. The chronic illness community on the Internet has been a lifesaver for me. Being sick is isolating, but the Internet lets us connect with other people with chronic illnesses, and for me at least, that really helps combat the sense of isolation as well as being a wonderful source of information.

27. Something that has surprised me about living with an illness is how quickly people forget about you once you're sick and don't get better in a typical time frame.

28. The nicest thing someone did for me when I wasn’t feeling well was find me a regular babysitter so my husband could get a few hours for himself each weekend. (Thank you, Mairi & MOMS Club!!)

29. I’m involved with Invisible Illness Week because I think the temporarily healthy and/or able-bodied don't realize that eventually we all develop health problems.

30. The fact that you read this list makes me feel cared about. Thank you!

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

Wednesday, September 2, 2009

On Marriage & Chronic Illness

Today is my eighth wedding anniversary.

And yet, more than anything else, it's a day in our life like any other.

Couples who use traditional vows promise during their wedding ceremony "to have and to hold from this day forward, for better or for worse, for richer, for poorer, in sickness and in health, to love and to cherish; from this day forward until death do us part."

But apparently way too many people say those words, or some variation of them, without really thinking about the meaning behind them:

In sickness and in health.

The most common statistic I've seen for divorce among couples dealing with a debilitating chronic illness for one or both members is 75 percent.

That number terrifies me, which is silly because it's not like perfectly healthy couples aren't getting divorced every day at an alleged rate of 50 percent. In my small circle of friends and acquaintances, I know of four couples who started the divorce process in the past six months and several more who are in troubled marriages that may or may not survive.

And I have to admit that while Scott and I used a mostly traditional vow, neither of us expected to have to deal with the kind of chronic illness I seem to have. Sometimes I think Scott got a pretty raw deal by marrying me. (Of course, without marrying me, he wouldn't have gotten Ellie, whom we both adore. So maybe that's some compensation ... :-)

I got an email last week from someone at More Magazine asking for feedback on an article in their September issue focusing on exactly this subject. The best part of the article, besides the fact that it quoted several of my friends for the blogosphere's chronic illness community, is that it focuses not on why marriages break up due to chronic illness, but on how they survive.

There's a lot of wisdom in this article, and I highly recommend it. It's long, but well worth the time to read it. And the tips from people who are managing to cope and even thrive would be useful for anyone in a relationship.

I'm lucky that my marriage is a strong one. I think we benefit from having married later in life than many do, and we both learned some good communication skills before we met. And Scott is a glass-half-full kind of guy, which helps a lot. He regularly acknowledges that even though he's doing more than his fair share of keeping our household running, he knows I still contribute and that being a single parent would be far more difficult. And of course he loves me. :-)

I think it helps that I acknowledge how much he's doing and how hard it is on him. And although he doesn't seem to need to very often, I let him vent when he does. (And vice versa, he listens when I need to vent too.) We've both mastered asking for what we want, and not feeling like it's any less valuable for having had to ask. Neither of us expect the other to be mind readers. And we know how to give the other one space when s/he needs it (although, since we're not mind readers, we sometimes have to explicitly ask for that space).

There's no guarantee that our marriage will survive, either my chronic illness or simply the tests of time. But I hope so. And I'm grateful every day that we found each other and found our own path to follow.

Happy anniversary, Scott!