Friday, January 30, 2009
Looking for a fun way to work out those fingers? Check out the new line of instructional sewing videos from "The Sew Teacher" at http://www.sewteacher.com/. Each video demonstrates how you can design and produce a different home decorative product in the comfort of your own home (provided you have a sewing machine). Some of their featured products include pillows, window treatments, and bedding. Their creative director (and instructor), Beth Bates, does a fabulous job of guiding you through each step of the sewing process, using simple and easy-to-follow instructions. I like to say she makes everything seem "sew" easy!
And if you're more interested in picking up a pair of needles, check out the 5 knitting tips below (some which can apply to sewing, too), featured in a recent article in the "Just Diagnosed" issue of Arthritis Today. The article, titled "Make Knitting Finger Friendly" encourages arthritis sufferers to work out the kinks keeping the following in mind:
1) Start small and pick a project like a hat or a scarf
2) Support your arms and hands with pillows for maximum comfort. The activity should make your joints more comfortable. If not, take a moment to rest.
3) Use rubber fingertips to help you grip the needles
4) Bamboo needles are lighter, warmer and not as slippery as Teflon-coated or metal needles
5) Take a break every 15 minutes or so - just to stretch your hands, neck and back
Take it from someone who used to cringe at the thought of threading a needle ("you want me to thread this skinny little thing into that little hole using these big ole' throbbing fingers?"). If I was feeling good enough and needed a little finger exercise to loosen up the joints, knitting or sewing a small project would be just the thing!
Wednesday, January 28, 2009
Monday, January 26, 2009
Friday, January 23, 2009
Of course, all of my doctors are located in the Northern Virginia area, which is great for those of you who are local. But that doesn't do much for those of you in Boise, Idaho or Phoenix, Arizona. Sure, you could get a referral from my doctor for a trusted colleague in your area, but wouldn't it be great to have a list of good, highly recommended doctors in your area, created by Lupus patients across the country?
That's where you come in -the dedicated readers of Despite Lupus. I'm hoping you'll share the contact information of one or two doctors in your area that you couldn't do without - those select medical professionals who have helped you whip Lupus into shape. I'm looking for names from all across the country - so if you've got a good doctor, let us know about it!
Feel free to post a comment with the information, or email me at firstname.lastname@example.org. And include a quick blurb while you're at it - maybe just a sentence or two about what makes your doc so good.
Don't have any names to share, but are desperately looking for one? Put your request in a comment - and we'll see if we can put this Lupus network to work!
Check back over the weekend for my list of tried and true doctors in the column at the right.
Wednesday, January 21, 2009
The sicker I get, the less I resemble myself
The less I resemble myself, the harder I push to try and regain
Monday, January 19, 2009
Recap and Review
My doctor uses a funny little recording device at the end of each appointment to document everything that’s been discussed. While I now understand how sensible, even vital, it is to have a recount of the finer points of an appointment, I’d never seen a professional use a tape recorder before. In the beginning, it just seemed so melodramatic and over-the-top. Whenever he would launch into his full-bore recap of an appointment, I would avoid making eye contact and do my best to suppress my laughter. Who knows why it was so funny back then, watching him speak into a little recorder about all of the terrible things that were happening to my body. Maybe it was the novelty, but I imagine the routine allowed me just a few minutes to refocus my thoughts, not toward myself, but on him. Here was this intelligent, experienced, highly-respected physician in whom I had put my complete faith, hope, and trust, struggling to speak normally into this teeny, tiny little recorder. He’d start speaking, then stop, rewind, rephrase his words, and start over again. He’d repeat and stumble over words, often tripping over the easiest phrases. I would have the same trouble, of course; the daunting task of recording’s one voice never seems to be an easy one.
At the end of each recording session, Dr R. enumerates the action items that are to be taken between now and the next appointment. Whether I need to start (or stop) a prescription, get an X-ray, see another doctor, or watch for symptoms to change or arise, it’s all recapped at this time. It’s the perfect way to summarize what has happened, what needs to happen, and in some cases, what should happen. The conclusion of the recording session is the definitive moment when we can look each other in the eye and confirm that, yes, with absolute certainty, doctor and patient are in agreement. In fact, it’s like a temporary reversal of roles, where I get to be the teacher and him, the student. He gives the oral report, and then I grade him on it. It is Dr. R’s moment in the spotlight, the few minutes where he tries to succinctly recount everything we’ve discussed while I sit back, “testing” his recall. In most cases, he records the details accurately. In the rare event that he misses something, I signal for him to stop, I correct his mistake (or ask for clarification), and then he continues on. I used to only half-listen as he repeated the happenings of our appointment, but I soon realized that this simple, albeit amusing, routine exercise is as much for my benefit as it is for his.
I overheard a phone conversation between him and an evidently frustrated, confused patient once. She was denying that he’d prescribed a medication to her and he said according to the dictation, he had. Didn’t she remember him mentioning it at that time? He expects his patients to listen intently, correcting his mistakes and double-checking his work, and I’m happy to oblige.
Don’t be too hard on yourself if you find that you’ve missed major points of the appointment. I never realized how disoriented I was during my sickest appointments until recently. I made an appointment to see someone other than my primary doctor in my perinatologist’s office, thinking I was seeing someone new. At the start of the appointment with her, I immediately launched into my entire medical history as it related to Lupus and pregnancy. Halfway through my story, she pointed out that I didn’t need to rehash my past history. She had actually seen me before. In fact, she’d performed an outpatient surgery and had followed up with me several times afterward. Those previous appointments had taken place during the early stages of a bad flare and in the midst of a miscarriage, so I definitely wasn’t as alert as I could have been. Thankfully, she understood my haziness and wasn’t offended!
It’s understandable if you’re not as coherent as you’d like to be during your appointments. Just be honest with yourself, and realize you may need to prepare or take extra steps to ensure that you’re getting the most out of your visit with the doctor. You should benefit from every appointment, both parties working in unison to ensure a successful outcome and a healthier, happier you!
Friday, January 16, 2009
So what am I to do with the couple of hours where the pain from the infection seems intolerable, but eventually passes? I've tried a couple of things - all of which have worked pretty well:
Keeping my plans - Last week, when the pain came on shortly after I finished nursing, we were getting ready to leave for church. I considered staying home - but you know what? The pain wouldn't have subsided any faster, I couldn't have slept it off, and since Johnny and Deirdre were headed to Mass anyway - there would be no one home to complain to. So, I decided to go - and it worked. The pain, thankfully, lasted less than an hour, and my mind was sufficiently distracted for most of the time. We had plans to go out to eat afterward, and I was relieved that we could keep them. It's always such a bummer to have to reschedule a good meal due to pain and suffering.
Taking a hot shower - I've tried this several times, and it seems to work pretty well. The only downside? When I step into the shower, I instantly relive my years of taking hot, scalding showers to numb my body from Lupus pain, which wasn't ever a fun experience.
Exercising - I guess maybe I like this one because with Lupus pain, I could never pull this off. But with the pain localized in a body part not so affected by walking or running, burning a few calories seems to help.
Running errands and cursing up a storm - I'm supposed to be honest, right? One morning, I was in such pain - I had to get out of the house. Deirdre, Johnny, and the boys were sleeping, and I knew I needed to let off some verbal steam. I needed to pick up a prescription (for the infection, ironically) anyway, so I hopped in the car, pulled out of my driveway, and let my tongue run amuck. Thankfully, the drugstore's only a couple of miles from my house, so I ran out of choice words by the time I got there. But you know what? I felt a lot better, and Deirdre didn't have to get out her earmuffs.
Of course, with chronic pain, sometimes these workarounds aren't so successful. I just read that my nearest hospital offers a pain management program, designed to "help those with chronic pain return to the highest level of function and independence possible, while improving the overall quality of life." Sounds good to me!
They're offering a free pain management lecture later this month - a valuable seminar for anyone fighting Lupus, Arthritis, etc. I'll include the details of the lecture below, just in case there are some Northern Virginians reading along who are interested. Let me know if you attend!
Presented by Talal Ghazal, MD
January 22, 2009, 7pm
Register by calling 703-750-8800.
Lecture is free, but registering is encouraged.
Wednesday, January 14, 2009
Monday, January 12, 2009
Just because I'm a glutton for punishment, I thought I'd call to make sure there wasn't a mistake made, or to see if I could appeal the increase. While the woman on the phone was very nice, I definitely heard a giggle or two on the other end of the phone when I posed my questions. She said three things that pretty much shut me down:
*The increase is based upon the past year's insurance claims and benefits paid.
Despite the bad news she delivered, she was very sympathetic, citing how her daughter also had a chronic illness and she, too, had very high premiums. Well - misery loves company, I guess!
Friday, January 9, 2009
A friend of mine was diagnosed with cancer several years ago. She was young, single and completely blindsided by the diagnosis. She spent months in and out hospitals, undergoing various treatments like chemotherapy and a bone marrow transplant, trying to rid her body of the cancer. During that time, she kept a journal, logging her innermost thoughts, feelings and experiences that she later compiled into a book. In one entry, if not several, she describes making a list of all the things she was going to do once the cancer was gone from her body. On her list were things like running, dancing, and singing, among many others. Although she was bedridden and staring death in the face, she believed she would regain her ability to live again. She never lost sight of the possibility. She never gave up hope. Today, she is cancer free, probably off running, dancing or singing somewhere. I certainly hope she is.
Now make your own list - see the Lupus Lesson column on the right for details!
Wednesday, January 7, 2009
I've found that the hardest part of having a blind dog is allowing him the freedom (and time) to figure out how to cope without vision. It's taken up to 45 minutes just to get Henry from the kitchen to the front door so that he can go outside -and then another 20 while he figures out where and how he should relieve himself. (Don't even ask how long it takes for him to get back inside and back to the kitchen.) He's getting more efficient every day, but it's been very tempting to just pick him up and carry him out so that he can get the job done. He hates when we do it though - watching him try and re-orient himself from scratch isn't any fun (I'll liken it to a panic attack.) We've succumbed a couple of times, which isn't so bad, so says the doctor, but we know deep down how important it is for Henry to exert his independence and find his way around on his own.
In watching Henry, I'm reminded of my own experience with Lupus. When your health has been compromised, the last thing you want is to have someone else doing everything for you - as if you can't help yourself. While I realize Henry doesn't suffer from the exact same psychological effects that I do, I know he needs his space. Our vet has confirmed that it's best to let Henry be Henry, as pampering him too much is only going to prevent him from learning how best to deal with his new situation.
I can tell that he likes figuring things out on his own. He wags when he manages to find his way outside, and seems pleased when he makes it to his bed independently. Most of all, he likes being treated the way we've always treated him - like a perfectly, normal little puglet. Certainly not like an invalid. (Although if bonbons were included in the "invalid" scenario, he might think twice.) The next time I start to rush Henry from one place to another, I'll remember how much I appreciate being treated like a normal person, despite Lupus.
Monday, January 5, 2009
Friday, January 2, 2009
That last bit of good news (#6) is somewhat bittersweet, since Henry has recently gone blind due to his disease. Dealing with a blind dog is proving to be quite a challenge, so I'm just thankful that Johnny and I are able to tackle it together. Henry may be a candidate for eye surgery down the road, but for the time being, he's going to have to tough it out. He's a good guy - and means well - so we're trying our best to help him learn his way around. It requires more patience than I have some days - but we'll make it through. It's Henry we're talking about, after all.