Sunday, January 22, 2012

What you can do to help, part II

My last post got so many more suggestions, that I decided to split it in two, rather than overwhelm people with a ridiculously long list. This way the ridiculously long list has an intermission. Much better. Anyway, here are a few more things people (or I) have suggested:

Yes, I know I don't look sick.
     1.   Do not glare, make disparaging remarks, or in any way harass a young (or not young) person who parks in a handicap spot (assuming (s)he does in fact have either a placard or handicap license plates). Many of us, as I've pointed out, do not look sick. Doesn't mean we aren't. That plus the fact that walking that extra five minutes in the sun from a spot further away could send us into a flare with a fever that lasts a week. Sure, there are people who drive their grandparents' car and park inappropriately. They are jerks. But don't paint all young people with the same brush. Some of us really do own the car and the plates.

    2.   Do not tell us that your one incredible product can cure our disease. Simply put, it can't. Lupus is a complex disease, and many of us are on a number of medications. These medications can have bad interactions with some herbal/alternative medicine products, so many of us are a little wary of adding anything to the mix.
3.   Do not say that "if [we] stop taking all those pills [we’ll] get better." The truth is, we take sometimes toxic pills because the alternative is crippling illness or death. Also, abruptly stopping a drug like prednisone is extremely dangerous because it will throw off the body's hormones. Speaking as a biomedical research scientist, there is no conspiracy I know about to make people sicker with drugs. In fact, many of my colleagues dedicate their entire lives to doing just the opposite. While pharmaceutical companies are, of course, gouging us all cost-wise, lupus patients still need the drugs. "All those pills" are keeping us alive and giving us some sort of quality of life.
4.   Be specific when offering to help. It’s kind to offer to “call me if you need something!” It really is. And it’s helpful. But it’s even more helpful to say something like, “Call me if you need me to watch your kids for a while so you can have some time to yourself. I’m usually free at X time on Y days.”
5.   Don’t make a big deal out of our diminished capabilities. People in my lab have known me long enough that they remember when I worked out twice a day, was an actively training black-belt, etc. I cannot tell you how much I appreciate that when, for example, I have to ask them to open a bottle because my hands are too weak these days, they do so without comment. It really makes me feel less self-conscious and means a lot to me.
6.   On the flip side, please don’t ever say “But you used to do…” Yes, we did. Now we can’t. We hate that fact way more than you do. Don’t rub it in.
7.   Help with everyday problems as they arise. Yesterday I received a note from my building’s maintenance that they’d noticed I had a tire with very low pressure. I currently have such bad vertigo that I fall down in my own kitchen. Imagine me, then, trying to put air into a flat tire. Wasn’t going to happen, and I knew it. Thankfully, one of my dearest and most tried and true friends has offered to help with anything. So I called her, and she came over on a Friday night in a Vermont Winter (single digit (F) weather, people), and filled my tire. I cannot express how grateful I am for that favor, or for having friends I can count on to do such things.
8.   Help patients have social lives. It’s so very hard to get out and see people when one is always exhausted and/or in pain. Offering to drive helps, as it saves us that much energy. Think small: grabbing a cup of coffee (or whatever) with a few friends may be all we’re able to manage. Or maybe even that’s too tiring. Swing by Starbucks, and bring the coffee to us. We can chat over coffee while lying on a couch, and you’ve probably just doubled our weekly social schedule!
9.   Especially for patients with kids: Call before dropping by. And, on a closely related subject, don’t ever be offended if  we say that, while we’d love to see you, we’re not up to it. It won’t be an excuse, it's just the simple truth. 
10. Help/encourage us in new hobbies. Talking about things we used to love to do is depressing; it brings home how sick we are now. But if we’ve managed to find something we can do while sick, see if there’s anything you can do to help us locate supplies, etc. Having an outside interest is absolutely necessary for the chronically ill if we don’t want to go completely bonkers.

My newest relatively non-exhausting hobby:
making ribbon flowers.


Credit is due to wonderful suggestions and ideas from many lupus patients on FB, a family member with the disease, and in one or two cases, inspiration came from butyoudon'tlooksick.com. Oh, and occasionally even to me.

21 comments:

  1. i love your new ribbon flower there beautifull our a verry talented oung ladie...i no you like to bake looking for health ways to make treats easy health meals or hobbies ou could sugest to rest of us lupies i love your blogs our so funny i am happy to have the chance to meet some one even ill ou crack me up laughing good for the soul god bless you sam...hugs

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  2. I do love baking...but all the sudden it seems like I may have either gluten intolerance or an allergy to wheat! So now if I even have the energy to bake (which I don't often), I can't use my old recipes anyway. Sigh. So I took up sewing, which is fun, but can be physically tiring if I'm *really* exhausted like I am this month. Hence ribbon flowers. Some ribbon, glue, needle and thread and voila: pretty things. I've even already received a request for some as a birthday present from a friend of mine. Most of the flowers above were made for her. :)

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  3. Oh, and as to God blessing me, believe me, he does. He really does. I have some of the best friends, the best boss, a lot of supportive family, and a very supportive Episcopal parish. I could be much worse off than I am.

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  4. Love these Sam ~ I make floral pens. I think you should put a pen on some of these.. And you could sell them.

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  5. Aww, thanks, Vic! I thought about penciling them, but may I should pen them, instead. Then I could sell them on etsy or something...but I need a wee bit more practice first!

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  6. Thanks Sam for your great way of expressing "life as a Lupie" Your posts always reminds me, that I am NOT ALONE. I also feel the same way about drop in company. I just had elbow (ulnar surgery), and Curt's Mom called that day and every day after, wanting to come by and visit. I just did not feel like visiting with anyone, esp when I was in so much pain. She really did not get it, and took offense.. I feel the same when I am in a lupus flare. I TRUELY love my privacy.. And having a friend bring by coffee for a short visit, is a great idea. Big hugs to you Love Vic

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  7. Send the link to Curt's Mom? :) When I'm in a bad flare I'm usually glad I can turn off my cellphone, not answer the door, and make people leave me alone to a large extent. But that only really works because I am single. :)

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  8. I'm a friend of your mom's (met you once when we lived in CA). I can't help you with the lupus (except for general, unspecific sympathy) but I applaud your approach of finding something beautiful that you can do--ribbon flowers--like your mom's knitting. It may not sound as cool as black belt karate, but it fills your soul without draining your body. I've done ribbon flowers and ribbon embroidery, which is great because it is SO much easier than it looks. If you ever want some book titles, ask.

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  9. Nice to (re)meet you! Sadly, I've just found out I have to have carpal tunnel surgery on both wrists, so I'm afraid the ribbon flowers may be put on hold for a bit. But I found it necessary, as I had to give up martial arts, hiking, biking, etc. to find new hobbies so as not to go stark raving mad. I also sew quite a bit, which leads to interesting conversations when people want to find out where I bought this or that dress. :)

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    1. Your Mom's blog is the main thing that keeps her from severe claustrophobia. She gets all over the world from her computer. Of course carpal tunnel surgery messes up your typing too. (My dad has had good success with voice recognition software.) If I come up with any brilliant hobby ideas that do not involve bright sunlight, tons of physical exertion, or wrists, I will pass them along. (Fingerpainting with your elbows? Your toes? Digitally turning electron microscope photos into modern art?) And when your wrists are functioning again, if you are interested in more ribbon flowers, just ask your mom to pass the word along. I could send along some silk ribbon, too, so you wouldn't have to hunt for it.

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    2. Yes, I understand the feeling of the world being in the computer. For all that I am fully employed, I am quite limited in what I can do, and have found lupus support forums online to be invaluable! So invaluable, as a matter of fact, that they've (re)shaped to some extent my career plans. Hence the decision to take my extensive science training (three degrees, hopefully) into the field of public health. That plus it's easier to do public health work from a computer when you're stuck at home in bed or in the hospital.

      At this point, I have had surgery on one wrist for a different kind of tendon release (similar to carpal tunnel, but not the same place), and a wide-excision (i.e. HUGE piece of my arm taken out) surgery on my other wrist/forearm due to malignant melanoma. So I have a certain amount of experience doing things one handedly. The only problem is that I'm supposed to be writing my doctoral thesis during all this. Should be fun. But I heal pretty quickly, so I'm hoping I won't be out of commission for too long.

      Thanks for the offer of ribbon; I may take you up on it sometime. I hit the big after-Christmas sales at Joanne's and Michael's, so I'm pretty well stocked at the moment, but we'll see how long that lasts. :)

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  10. Thanks for raising my awareness on the handicapped parking issue. I don't think I've ever glared, but I have wondered. Not next time.

    Good luck with the surgery. I hope the healing goes very quickly so you can get back to hands on hobbies.

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    1. Thanks for being more aware in the future! I look totally young, thin (taking 2 grams of poison a day will do that to you), pretty and healthy. Nobody would ever guess that I have arthritis in all my joints, troubles breathing because of lupus inflammation around my lungs, and such bad photosensitivity that a walk across a parking lot can send me into a flare that lasts at least a week and gives me constant fevers. I understand why people don't automatically assume I'm sick, but I don't like it when they automatically assume I'm somehow gaming the system. I'm not, and would love to be able to walk across a parking lot like a normal twenty-something!!!

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  11. I've got another question for you. Could you explain lupus related sun sensitivity--in terms of minutes and degree of exposure--not biological mechanisms. I'm from a family that views sunscreen as one of the triumphs of the 20th century, but I can still swim for half an hour before the sun comes up all the way without sunscreen and not get burned. (I grew up with the day at the beach/night in the ER sort of dilema, though.) So how sensitive are you (or your mom)? Car to store? Stand in sun for photo? Outside under canvas canopy? Under concrete shade structure? Inside near a window? If I don't know, it's really hard to take it into account and recognize potential problems.

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    1. I did write a post on the subject that is here: http://samvskitchen.blogspot.com/2011/04/where-i-hid-on-my-summer-vacation.html . However, on the subject of how much exposure each person can take it varies quite a bit. Depending on what drugs we're on, our genetic heritage, and many other factors, some can tolerate a lot more than others.

      I know my mom can't spend any amount of time outside, even with a hat and sunscreen without getting hit by a flare. Sadly, I'm actually worse. I cannot be around uncovered fluorescent lights or (closed) windows without starting to get fevers and rashes. Apparently a very small percentage of us are so photosensitive that the small amount of UV that passes through regular glass can spark a flare. I'm one of those. There are special coverings one can buy for sunshields and the like, and it's something I need to look into at some point.

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    2. Oh and I also have a history of melanoma, which I get from my dad's family. Not sure how much/if it complicates the lupus sensitivity, but it's safe to say that I'm as photophobic as an albino vampire.

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  12. sam i love reading your blogs your funny i have learned a lot...do to my lupus.. inneed3 vales replaced my arotic micro one that starts with p has some thing to do with lungs aortic vales severe leakk micro p vale is moderate its matter time be 4 the surgery must i am 49 40 pls over weight i pray every day that it wont become emergency plus disk problems suger few others i get fustrated but its beyon my control all i can say thank god 4 all of you.. my famly pain pills i try to do as much as i can i chase after my granddaughter people in my conplex say you dont look sick..little do they no i am liveing on strong pain meds my belife in god my group famly keep me going and reading your blogs thank you sam 4 being you excuse my spelling typeing suck os course right now my hand twice size...my onley problem is my son just dont get it he causes me 5 minutes befor he needs me to watch bellka my 2 year old granddaughter...,he talks like he has it but he dont have great night hugs sharon

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  13. I too have Lupus, I was diagnosed at age 12 & just turned 50! I found your blog via Pinterest & began following. Your ribbon flowers are lovely! I began making jewelry almost 2 yrs ago; it helps keep my fingers moving & I enjoy making pretty things. My kids are my main source of joy, and although they are grown now, it seems like not much has changed. I try to keep that in mind when I'm having a "I just can't move" attack! But in all the years since I've been diagnosed, what still bothers me the most (besides the constant pain & tiredness) is the "you certainly don't look sick" comment!!!!!!!!!! Even when they know about the countless hospital stays, many surgeries and many, many meds!!! Apparently, there is no cure for Lupus or stupidity! Hang in, thanx for your blog!

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    1. I have to admit that sometimes I consider the "baseball bat" method of "curing" stupidity. So far I've restrained myself, though.

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