Knowledge as empowerment

“Hi, Dr. Lim,

“I’ve had RA for 23 years, but it has only been during the last three years or so that I’ve really learned about this disease, thanks to Internet medical websites and patient/doctor bloggers. When I was first diagnosed, there was very little info about RA available to patients. My doctor at the time, an internist, explained the basics to me, but of course, the basics really aren’t enough. I spent many, many years deeply frustrated by having to take medicines with unpleasant and sometimes dangerous side-effects, only to discover that, one by one, they didn’t relieve my pain nor cure my disease.

“Today, I understand a lot more about RA and the drugs used to treat it. I know and accept that RA is a uniquely individual disease; not only do the symptoms and intensity of the disease vary from person to person, but how each person’s body reacts to the different drugs varies as well. I understand, now, my own frustration and anger (and have forgiven myself for it). And I also understand how frustrated my poor internal medicine doc must have been when his compassionate attempts to treat me failed time and time again.

“Today, with the help of a good rheumatologist, a combination of drugs and a much better education about the disease itself, my RA is under fair control.

“I guess what I’m saying here is thank you. I’m simply delighted that good doctors like yourself are doing all they can to educate not only their patients about their illnesses, but also pass that vital information on to the world at large. It’s SO important for patients to understand all they can about the diseases they battle, particularly diseases like RA: mysterious, terribly painful, potentially disabling, sometimes deadly and so far, incurable. Thank you for taking the time to post about your specialty and the diseases you treat. Your dedication, care and compassion for those of us who cope with these diseases is greatly appreciated. I’m looking forward to reading more of your posts in the future. Knowledge translates to hope and empowers us all.”

I wrote the above as a comment to a post written by Dr. Irwin Lim, an Australian

Dr. Irwin Lim

rheumatologist, a few weeks ago. Dr. Lim recently took up blogging. He writes that he was encouraged by his business manager to start a blog as a marketing tool, something that seemed vaguely mercenary to him. For a long time, he resisted.

And then, this:

“A few more weeks passed. During this time, I experienced a strange run of patients developing unpredictable, serious side effects to medications I commonly use to treat their pain and to prevent their joint destruction. In all cases, the patients attended hospital and there were aspects to their treatment that suggested a lack of understanding about their underlying disease states and the medications they were using. And this lack of understanding occurred on the part of the staff treating them, and to an extent, the patient’s family members.  I had previously thought that I was good at communicating and educating my patients. I need to do better. I accept that I have a responsibility to educate the people around them, both medical and social. One way of doing this is through this blog.

“I hope to share with you my thoughts on musculoskeletal disease, healthcare in general, and our Connected Care philosophy. While I know that I am opinionated, I hope that I can interest you and maybe, even educate you in some way. Who knows, I may even be able to use social media to actually help someone. ”

Well, yes.

Dr. Lim is not only a good doctor, he’s a good writer. His posts are chock full of useful, insightful information. Still, I hesitated to add his blog to my blog roll because its main purpose is to market his medical group. Nothing wrong with that, of course, but by adding his blog, I felt I’d be perceived as advocating his medical practice. Since I live on the other side of the world from Dr. Lim and am not one of his patients, such advocacy seems both unwise and untoward.

It was a real conundrum. Today, I visited Dr. Lim’s blog again, and found even more useful information about a variety of subjects, including sciatica (his wife has been battling it), osteoporosis, RA and several posts by his colleagues about physical therapy.  Impressive. All of the posts are thoughtful and well-written. It’s info that people like me, who cope with rheumatoid arthritis and other autoimmune and musculoskeletal diseases, can use to better understand and manage their condition.

While I in no way advocate Dr. Lim’s business, I surely do advocate his knowledge and ability to put it into layman’s terms in his excellent blog posts. Such good information should be shared, and to that end I’ve added BJC Health: Connected Care, to my blog roll. I encourage you to visit Dr. Lim’s blog and hope you’ll find it as inviting and informative as I have.

P.S.: I’d like to extend a heartfelt thank you to all of you for your compassionate thoughts and comments regarding my Mom as she battled sciatica and, later, that serious and debilitating nausea. The good vibes you sent our way helped me keep my own spirits up. Mom is doing very much better with each passing day. She feels good, her pain level is nearly nil and, to my astonished delight, she’s eating with real gusto and enjoyment. The change in her is night-and-day. What a huge relief!

And thank you, too, for your constant encouragement regarding my hip bursitis. There’s not much to say about that at the moment, except that it continues, it hurts and I look forward to physical therapy soon in the hope that it will provide some relief.

Have a lovely, peaceful Sunday, friends. Walk in beauty.

Looking up

Good news!

Mom is recovering. It’s been a long slog, but because of a compassionate gastroenterologist and a caring pain doctor, she’s doing much, much better.

The tummy doc (sorry, but my term for “gastroenterologist” is not only easier to type, but I think it’s much more appealing) gave up a morning of his day off in order to discover why Mom was so dreadfully nauseated. She couldn’t eat. She couldn’t even comfortably drink water.  Desperately worried and frustrated because the stomach med he’d given her was having no effect, and because the soonest the doc could do the upper GI endoscopy was a month away, I called his office and left him a message that said, “If you don’t do this now, there won’t be anything left of her to scope!” I used those very words. Mom was losing weight fast. She was so weak she could barely walk. She was disoriented and confused. She couldn’t remember from moment to moment what was wrong with her or why, only that she felt awful.

She was slowly starving to death before my eyes.

That good doctor responded to my concern by arranging for the procedure the very next day (last Friday). Fortunately, he discovered no terrible diseases. What he did find was a stomach that was producing way too much acid, and places near her esophagus and in the lining of the stomach where the acid had caused injury. He took some tissue samples for biopsy, just in case, but his diagnosis was a severely acidic tummy. He also said that the narcotic pain killer she’s been taking for the last month and a half was causing further upset in there, even though she was now taking very little of it.

His solution? A new form of strong acid-reducing medication, taken in the morning. Her recovery began the following day, as the nausea lessened and she was able to eat. She even got hungry. And now, a week later, it seems like she’s hungry all the time! She can only eat a little at a time, but she eats frequently. The change in her general health, both physical and mental, is profound.

Stomach acid. How amazing that too much of it could bring an elderly woman to the brink of starvation. And that once neutralized, her recovery could take place so quickly.

It’s a huge relief, believe me.

The sciatica, while greatly improved, was still causing her some pain. At rest it was bearable, generally no more than a dull ache. But if Mom tried to walk around for more than a couple of minutes, it would wake up and shoot pain down her right leg. She’d have to stop. Combined with the lack of water and nutrition, it was still serious. And though she didn’t take more than a tablet or two a day, she still needed the narcotic pain med.

She saw the pain doc again a few days ago. He gave her another steroid injection. She was quite sore afterward, but by the end of the following day, she felt great. Yesterday, she wanted to go out and buy some new jeans—her old ones had gotten way too big. So off we went.

She shopped for a full hour and a half before tiring. Got her new jeans. And then, hungry as a horse, directed me to Panda Express for Chinese take-home. When we got home, she ate well. She had very little sciatic pain—certainly not enough to cut her shopping short. And through it all she was mentally sharp, oriented, and totally enjoying herself.

I cannot tell you how relieved I am.

As for me? The last steroid injections a month or so ago failed again. I’m still waiting for my physical therapy appointment, during which I hope to learn exercises that might relieve the bursitis pain in my hips. That appointment was originally scheduled for last Friday, but I had to cancel it so I could get Mom to the tummy doc—far more important, at the time.

So, I have a new appointment coming up on March 7. My hips still ache constantly, but the intensity of the pain varies. Sometimes they hurt a lot, sometimes only a little. And so far, they haven’t affected my ability to move or walk. I count my blessings.

I’ve had the occasional rheuma pain in my right hip as well, though that seems to be transient. And of course, my hands are always stiff and achy. Tramadol helps though, taking the sharp edge off the pain in both my hands and my hips.

We’re having a lovely rainstorm here in Northern California today. Twenty-five miles up the mountain at my house in Camino, it’s snowing. They got about two feet of new snow up there about a week ago, and the forecast now is for about the same amount between now and tomorrow afternoon. I’ve talked with Mr. Wren, with my daughter Cary and her fiancé, Matt. They’re all doing just fine. The woodstove is blazing, they’re nice and warm, and they’re stocked up for the weekend. Shadow and Finny are having a ball playing in the snow.

I miss seeing them, and I miss the snow, but I have to admit I don’t miss having to shovel paths through it so I can carry in firewood. I’m pretty spoiled down here in the low foothills with Mom—we have central heat, no need for a wood stove and nothing more serious than a little wind and rain.

I think we can handle it.

Dancing

We’ve begun that age-old dance, my mother and I. It’s the one that most parents and their adult children do, eventually; the one during which we exchange our lifetime roles. As we dance, my mother becomes the child and I become the parent.

It’s difficult. Mom and I are equally reluctant to do the dance. It’s painful. Infinitely tender. We’re unsure of the steps; we find ourselves awkward in our sudden intimacy; shy with love, two women who share ancestral blood and the complex history of mothers and daughters. There’s no way of knowing how long the dance will last. It could be a marathon. It could be very short. Whichever happens, we’re both in it for the duration. We’ll see its end together.

The sciatica Mom’s suffered with for the last three months is nearly gone. We’re celebrating its slow departure, delighted that she now has so little pain. But in its place has come a low, evil brown nausea.  It’s stealing her appetite, her enjoyment of life, and burdening her with frustration… and fear.

In the morning she’s having an upper GI endoscopy. We hope to discover what’s causing this dreadful, debilitating nausea. Mom has lost nearly 12 pounds, most of them in the last three weeks. She can barely eat or even drink water; I took her to the ER a week ago because she became so dehydrated. They gave her IV fluids and sent us home.

The lack of food and water has not only left Mom alarmingly weak, it’s also affected her ability to think clearly. She’s confused and forgetful. She cannot understand why she’s so sick. She cries, and I try not to. To stay strong.

Tonight, a few hours after going to bed, she got up to use the bathroom and fell, scraping and bruising her back. I helped her up and back to bed, cleaned the ugly scrape and painted it with antibacterial salve. Mom said that no other part of her seemed to hurt, but of course I’m worried about her ultra-fragile bones, or that she might have irritated her sciatic nerve again. She was able to walk back to bed unaided, though, which I think is a good sign. I think—I hope—she’s all right.

That fall scared the dickens out of both of us.

I hope the gastroenterologist will be able find out what’s causing her awful nausea. I hope he can treat it quickly and effectively, so she can get on with recovering her strength and stamina. And I hope that we’ll be allowed to stop dancing, at least for a little while.