Thursday, March 31, 2011

Things that Make My Life Easier: UV Monkey

Here we are again, with another installment of “Things that Make My Life Easier.” Some people with SLE/Lupus are mildly to very photosensitive. I am one of those 'very'  people. Some medications can make you photosensitive or more so if you were already dealing with that situation. I am taking one of those medications.

Recently I was gifted with a UV Monkey, from ThinkGeek.

This is a small, round device with four colored panels around one circular central panel. The whole thing measures barely an inch and a half across. It can be put on a key-chain, but since I am unsure about how durable or fragile it really is, I keep it in a pocket in my purse.

The colored panels correspond to different UV Index ratings, and you are able to determine the reading by matching one of those to the middle circle, which changes color to let you know what the rating is in your current location. Level 1 is a UV Index of 1-2, Level 2 is 3-5, Level 3 is 6-8, and Level 4 is 9 – 11. Once you have been sensitive to UV light for a while, you start to get a handle on what your own particular tolerances are and how to manage them. I may do a separate post on how I manage, but I do not have any really nifty secrets (hell, my skin will burn and blister sitting in a car!).

I have only used this a few times so far, but I see the potential for it and it looks good. Cloudy days are the ones that screw with me, when I forget that UV rays are not blocked by clouds. Sigh. This will help me remember.

If you have photosensitivity, I recommend the UV Monkey if you have $9.99 (currently on sale for $7.99) plus shipping. In the long run, it is probably cheaper and definitely more comfortable and convenient than treating the sunburns, headaches, and nausea that can result from over exposure!

*Note: The UV Monkey is also useful for knowing when is best to charge solar devices.

UV Index

Wednesday, March 30, 2011

Things that Make My Life Easier: Online Rx Refills

“Things that make my life easier” was an idea from Amanda W., and she wrote about it at her home site, Three Rivers Fog. I read about her idea on FWD: Feminists with Disabilities (the site is still there, but is no longer producing new content, which is a shame and I will talk about that soon).

I think that the idea is a really good one, and I would like to lend a hand in helping to keep it alive. So here is my first PatientC: Things that Make My Life Easier!

I use a CVS. Our family has since we moved away from a really great family owned pharmacy. CVS has been convenient for us, and we have been pretty happy with them most of the time. I manage my own ‘scripts along with my husband’s and both our daughters. Unfortunately, that is a fair amount of pills, etc. Recently I have started streamlining our habits and trying to cut out time and effort that is ill-spent (relaxing or goofing off counts as time well spent, unless something else really needs to be done!). So I finally investigated the web site functions offered by CVS.

I could really kick myself for not doing this sooner! They offer prescription refills, transferring prescriptions online, and easy access to your annual Rx records should you need them. I was also able to set up my daughters Rx’s on my account. My husband had to set up an account to give me permission to manage his ‘scripts, but I do appreciate that they do try to keep fraud down.

So setting up the accounts and getting them connected was a bit fidget-filled, but it paid off almost immediately. When I log on to fill a ‘script, it is red if it is eligible to be refilled now, I check the box next to the ones I want, and then click the big red button near the bottom of the page. Depending on your insurance, they may be able to tell you how much it will cost before the next screen. The next screen you can enter when you want to be able to pick it up, just like their automated phone line refills. Once done, you receive a confirmation e-mail, and the stuff has always been ready when we came in to pick it up.

*Note: if you use their customer card for discounts and savings, you can manage it from the same log-on.

*Note: this service is not helpful for refilling prescriptions of controlled substances (painkillers, ADD/ADHD medications, etc…) as you have to deal with the physical prescription, but is otherwise very useful.

The following all have, or as best I can tell, appear to have, online refills available. Some of them also allow you to transfer prescriptions, get e-mail reminders, and whatnot. This is just a quick hit of places that offer similar services based of off a quick mental list and then a scan of their available services. Feel free to add more in the comments section, and I will list them here.

Rite Aid
Tucker Pharmacy (used to be Tucker State Pharmacy) was bought, but is still around, but if it does have a web page, it is not under that name. Upon a Google street view search, they are still there, but are now a Tucker (Walgreen’s). So they have it.
Marwood Low Cost Pharmacy does not appear to have a web page.
Dr. Aziz Pharmacy does not appear to have it.
Marsh does not appear to have it.

Tuesday, March 29, 2011

There is No Family Cookbook

Yes, I say that with confidence. You see, at the household here, schedules have shifted around, and the only person with the time (?!?) to cook is me. If you know me, you know that I rarely, rarely cook. I make a decent pot of chili, but that is about it. So lately I have been browsing cook books, internet recipe cites, and the cooking brains of friends and family.

There is no family cookbook. At least, there is not a cookbook that adequately addresses cooking around a family. I know this, because a real family cookbook would say things like the following:

" must stir the pot constantly for the next five minutes. Sh when Timmy has his daily meltdown, tell him he will have to wait. If it happens on a schedule, try to plan around it..."

"...Here is a good place to stop if Betty skins her knee. Again. Everything can wait - just fridge the sauce if you take more than thirty minutes. Maybe you should get her tested..."

"put the beater in the bowl and now would be a good time to hold Chad. The standing mixer just needs to be watched for six to eight minutes and you know how the vibration and a verse of "Summertime" settles the child quite a bit. Are you sure that is not colic..."

See, now that would be a family cookbook!

SmartAss Protips: Bedrest

I wrote this on a disability discussion board, and thought it would be good to post on PatientC!

I wracked my brain to think of the things I do when I am stuck in bed, and here are a few things I remember. This tips may help you in a temporary bed rest situation, and if you think they will, feel free to use them. If you have tips of your own, please share them in the comments!

Planning - this helps me a lot, as it reminds me that bed rest will not last forever. I take my upcoming projects, write them out and plot each step. If the malady itself will screw with the project (say the project is knitting and my hands are messed up), then I include what recovery milestone I need to reach in order to complete each particular step. If I can, I may go ahead to work on the project up to the point where I cannot anymore, in anticipation of getting out of bed again.

Communicating - I try to get things out of my system. I talk with family, e-mail friends. Feel around, see who is able to get it enough to share with them and then do so. I say that with this caveat: people will surprise you. Some folks you thought would be there will flee and some that you maybe thought couldn't be bothered will come through in amazing ways. Writing works for me when I do not feel like another person is available, or I am trying to sort something out for myself first, or I am having a fit of pique.

Change things up - tell folks when you are up for company, if fresh faces help you at all. If I am up to making bathroom trips, I use that to my advantage and change the scenery. Sometimes I will make the morning trip and then retire on the couch. That night, when I make my last trip, I will end it in the bedroom.

Brain play - Got a book you always wanted to have time to read? Heard of a subject you always meant to research when you had the opportunity? Is there a neat but maybe useless-in-daily-life skill you wish you could develop? Video games are one of my favorites here (I less-than-three PopCap games!) and they usually take minimum to moderate mental acuity. I bought my first Xbox right before I had my tonsils removed. It was one of my best calls ever! Volunteering for phone work is a great idea! If you are a mind for it, this is a great time to work on skills like meditation, creative visualization, focus and concentration...

Ask for help - when people say "If you need anything..." let them know that you do. Even if you are not comfortable asking for something big, like babysitting, maybe you can ask for them to bring over a movie your kids have not seen, pop some microwave popcorn and turn watching TV with the kids for 90 minutes into an event! 

All my best for your speedy recovery. This sort of thing can be so much more taxing than a lot of lucky people will ever know.

Monday, March 28, 2011

Bitch on Gaming

I am working on about 22 pages of ideas for this blog, but while I am at it, I want to recommend this article on Bitch: The Games We Play: Access This. It brings up some of the same thoughts I have had about gaming, and great new ones too!


Thursday, March 10, 2011

SmartAss Protips: Puking

Puking, vomiting, upchucking, worshiping the porcelain alter/goddess/god, driving the toilet bus, Technicolor yawn, horking, chunder, hurling, blowing chunks, ralphing, spewing, extreme anti-peristalsis, spewing, barfing, rainbow gagging, heaving, retching...

We have a lot of names for it, and none of them are nice – because vomiting is never pleasurable (outside of say, a fetishist, but that is not the topic of this post).

Here are some handy tips for those days when food just won’t stay down. This is not your standard nausea battle guide, this is stuff that has worked for me, and may work for you! I had two pregnancies that were full of fail when it came to keeping food down, and it has come up (?!?) again as a new med had me face down on a fairly frequent basis. It took two months to fix the situation: I was hesitant to call, because the pain medication was actually working, the first time I called they assumed the problem was on the other end of my digestive tract, when the medication they prescribed for that did not work I spread out my dosage more evenly through the day and eventually found dosages/times that worked for me (and still had me at or under my allotted amount per day).

Important note: I say this again later, but I want to be clear up here -- this is my own personal advice for handling a bout of puking. If you have any questions at all about why you are sick, you should talk to your medical professional, if possible. This is not meant to be a substitute for qualified medical advice!

Let's get too it!

Put your hair back – ponytail, clips, pins, whatever. My hair is long, so it is definitely a concern when I am throwing down with the porcelain.

Have a tidy bowl – if my stomach contents are already unsteady, one sure path to a speedy exit is a disgusting toilet. So, keep it tidy or ask your partner/caretaker/aid to lend a hand here.

Protect the pretties – if you wear [edit - spelling] long necklaces, consider taking them off until you feel better, or cheat like I do: tuck them into your shirt or bra straps.

Pearly whites – always brush or at least rinse afterwards. You don’t need old food or digestive juices hanging out on your teeth. Post-puke teeth are gross anyway, and you do not need that reminder hanging around while you try to hold something down.

Find your balm – some folks swear by ginger, starches, or mint. I am a shortbread girl myself. Experiment and find what works for you. Ice cream works occasionally for me. My boyfriend swears by drinking a Coke to settle his tummy. Motion sickness pills can help, too, by the way.

Be prepared – if you feel queasy, and unsure of your ability to make it to your bathroom, there is no shame in preparing ahead of time. Keep a basin, bucket, or wastebasket handy. Think about how you want to manage afterwards: are you up to cleaning it out, or would you rather double bag line it so you can tie them up and toss them?

Listen up – pay attention to what your body tells you. Do not wait until the last minute to do what you need to do. This, coupled with the above, can help prevent a lot of accidents.

Get it over with – I have found that when I am dealing with a bout of antiperistaltic movement, sometimes it is best to just get it over with, rather than fighting it tooth and nail. Your mileage may vary.

Talk it out – if you have a partner, roommate, caregiver, aid, let them know what is going on. Do you want someone to hold your hair back, or greet you with a bottle of water when you are done? Have a conversation, and do not be ashamed of things you have little or no control over, okay? Early in my relationship with my husband we both caught a stomach bug so terrible we were both prescribed anti-nausea suppositories -- as you can guess, we worked through the awkwardness then.

Watch what you eat – keep an eye out for how things may come back up when you are chowing down. I tend to stick to soft stuff: pudding, ice cream, apple sauce, flavored oatmeal. You may want to stay away from other foods: popcorn (eck! Don’t ask!), hard chips like potato or corn, spicy foods (if it stings going down, it is going to be a bad scene when it comes back), big leafy foods can be unpleasant, avoid anything that usually upsets your stomach or is uncomfortable (spicy foods at or beyond your tolerance point).

Along these lines, if you don’t already – chew your damn food! Seriously, you should do this whether you are puking or not. Take small bites, and chew thoroughly. Do you ever watch people eat? Even when there is no time constraint, many folks eat like they are in a huge hurry. But when you are nauseated, the idea that a bite could get wedged in your nose is likely to encourage you to develop this good habit.

Water, water -- stay hydrated. Seriously, no matter how frequently you are vomiting, you must stay hydrated. Dehydration is one of the big problems with vomiting as with diarrhea. 

Knowledge is power -- if you have a condition that can be worsened by vomiting (diabetes comes to mind), make sure you know if you should do anything special to keep disaster at bay.

Doctor, doctor – it is always okay to ask your doc for advice and help with this issue. I recommend it, especially if you think that it may be a sign of illness, or intolerance to a medication. Some areas have nurses you can consult by phone. Your medical professional may recommend anything from ginger to an anti-nausea ‘script. Work with them to come up with a solution you can manage.

Have any tips? Feel free to share in the comments! Have a question? Go ahead and ask! Got an opinion? Check out the comment policy, and fire away!