Tuesday, January 19, 2010

With Privilege Comes Responsibility

I've had many thoughts this past week, and today when I was mentally trying to summarize them all, I came up with this title (not original, but very true and very quotable).

Anna had an appointment to check her eyes last Thursday. This comes one month after increasing the frequency of the Humira injections from every two weeks to every ten days. The right eye remains the same with a trace of inflammation; the left eye has improved by 50%. Last month, she had 20+ cells of inflammation in the little beam of light which the ophthalmologist uses to determine the amount of inflammation. This past Thursday, she had 10+ cells. So that's good. I must admit, though, that my expectations were too high. Anna had received her last Humira injection less than 24 hours before the appointment. In my mind (which doesn't totally understand exactly how this medication works), I was thinking that the injection of medication should have "zapped" out a whole lot of inflammation! Oh, well . . . as friends have reminded me, this battle with juvenile arthritis and uveitis is a marathon, not a sprint (now I do understand that! My son is a long-distance runner, but not a sprinter).

As I was mulling over these events, the earthquake in Haiti occurred. And then as I was thinking through Anna's disease(s) and medications, I was thinking of just how privileged we are, and I've been wondering how can I even begin to complain about any of that. I wonder just how many little children in Haiti may have arthritis or uveitis issues, and are they even diagnosed, and do they even get any help or have any hope? And even if they did . . . Anna's Humira is delivered right to our doorstep, and the people at the MedMark Pharmacy are always so helpful and bend over backwards to ensure that we receive what we need, when we need it. I also think of friends who have to travel far and wide so that their children can receive care from reputable pediatric rheumatologists and ophthalmologists. Anna's specialists are just 20 miles away, and we are within several hours drive of a myriad of specialists should we ever need them.

Our blessings are great. Anna remains symptom-free, so she has no pain, even with past active arthritis in her TMJs. She really lives a relatively normal 12-year-old life. We have really good insurance, and our state offers supplemental health care for children with chronic illnesses.

Even though our family would not be considered "privileged" or wealthy in our own community, I know there are people around the world who would think we are very privileged indeed. That thought is truly humbling. So what does that mean as far as responsibilities? I can't answer that yet. I'll be praying about that and really listen. For right now, it means sharing Anna's story so that others in similar situations might be encouraged and find hope for the future instead of despair.


Natalie said...

I stopped by once or twice before but lost the link when my computer crashed. Anyway, I had some rare free time this morning and spent an hour reading through Anna's journey. This post is beautiful and inspiring.

My daughter is only 3 and we found out this week that she needs cataract surgery due to complications from uveitis. I've been looking at this as the first step toward goiing blind, but perhaps that is not the case.

I see through Anna's uveitis that life can still be normal even years later and there is always hope. Thanks for sharing,


Tammy Z said...

Natalie, Thank you so much for your kind words! I'm glad you found my blog again (computer crashes are never fun). I appreciate your comment so very much, because what you describe (that you see through Anna's uveitis that life can still be normal even years later) is exactly why I blog about this. I was looking for similar stories when Anna was in the early years.

I'm so sorry your daughter needs cataract surgery. However, I can tell you that I know of many children who have had similar surgeries because of uveitis, and they are also living relatively normal lives years later.

When people ask me about uveitis (as you may have found out, not many people have ever heard of it), and they ask what can happen with it, I tell them (quoting from research, "Untreated uveitis can lead to blindness." But then I always tell them (and remind myself), "But we are treating it--Anna has regular appointments with the ophthalmologist."

In a discussion with Anna's rheumatologist about medications, he said that while cataract surgery and/or glaucoma surgery are not preferable, he feels they are better options than some of the risks of some of these brand new medications (or some they have shown to cause strange malignancies) that are new without much data. I agree with him. When he explains some of the "cons," of some of these new, strong medications, I would rather have Anna on the steroid drops for a while and risk cataracts & glaucoma.

If you're on Facebook, please look me up (Tammy Barger Zeigler) and feel free to add me. I always post updates to this blog as "notes" on Facebook. There are several other JA and uveitis moms there that comment and converse.

Thanks again, Natalie.