Anxiety and frustration too easily morph into martyrdom and I’ve found that…
A warm review by a mental health provider came in today for my little book:
“Since laughing is (of course) therapeutic, folks with chronic illness would benefit from reading your gem. They’d also get the bonus of very helpful tips, not to mention your compassion.”
-Ann Freese, LCMHC
This is wonderful encouragement as I try to hone my writing through blogging, essay writing, and a someday 2nd edition of the book (in paper and including my colorful graphically-designed thoughts!) It’s a journey that much to my own frustration, is often interrupted by my own chronic illness. But the benefits far outweigh the costs, as writing enables me to endure the mental battles that accompany physical illness. Especially when someone thinks the writing is funny. Now that is a great feeling.
I always have a pack of Salonpas Large Size (5″x3″) patches in my handbag. One patch covers up the site of my worst shoulder muscle spasms. It does kind of feel like it’s chemically burning your skin, but if you have muscle spasms like mine, you welcome the distraction. Some days it even relaxes the muscle enough that hours later when I peel it off, the spasm is almost gone. I get them at Rite Aid, a pack of 4 patches costs $2.99.
As I’ve mentioned before, I am a big fan of prunes and a certain prune/plum juice to combat the common constipation problem that comes with chronic illness and medication side effects, but I thought it was worth mentioning for those of you that prefer Miralax that a doctor wrote me a prescription for it this summer, and I got a giant bottle for way less than the cost of a tiny bottle of OTC Miralax. I checked to make sure it really was the same thing, and as you can see below, the generic Rx seems to have exactly the same formula.
I hope this information is helpful to someone out there!
I’m not very good at getting rest when I’m home alone. Chris was home sick for a couple days this summer, and I was lounging about with him, taking naps, reading, watching tv. Yet when I’m at home and he’s at work I can’t settle. Which isn’t some kind of hard-working virtue of mine, it’s just unwise and stupid. Because if I spend any length of time cleaning or working on little projects, the muscle spasms and the dizziness kick in and then I’m laid up and miserable and totally useless for another day and half. But I just can’t seem to learn. I’ll stagger around with blurred vision all tachycardic like my life depends on putting the dishes away.
So my new strategy involves mediocre television. Say I want to sweep my downstairs floors. Instead of push, push, pushing through it until I’m forced to lay down on my not-yet-clean floor, I’ve been queuing up Nextflix and playing a mediocre tv show in the living room. With a mediocre show, I’m happy to listen to it in either room and occasionally sit down on the couch to watch. Bingo. That’s me, taking it easier while I clean.
Great article on “Requesting Disability Accommodations” in school settings here. The author Julie, over at Counting My Spoons blog, reminds us that accommodations doesn’t just mean a stereotypical wheelchair; one of her accommodations is that she can wear sunglasses in class, another that she be able to type long exams instead of handwrite them. And remember this isn’t just for colleges – if you’re the parent of an ill child, don’t be afraid to insist (well, ask nicely first) on creative accommodations that would help even the playing field for your child.
Sometimes I meantally start a list of the accommodations my childhood self needed, but the minute I start thinking about it, I feel my pain getting worse from the stress of the memories. There’s no point in going there, none whatsoever. For my physical and mental health, I have to let go of that crap, live for now, and look forward to the future. Which, by the way, is way more fun.
If you are interested in something that draws you so far into its reality that you nearly forget about your own reality (sounds pretty good doesn’t it?), then get your hands on the books of The Southern Beach Trilogy by Jeff Vandermeer.
I sped through the first book, Annihilation, and last night finished the second, Authority. I’m now waiting for someone to return the third book to my local public library. Love that place.
I toyed with the idea of including a chapter in my little book entitled, “Go to the Library.” If I ever were to include this in some newly revised edition of the book, here are my reasons I think everyone – but especially the chronically ill – should go to the library:
- It’s free. I would hate to make assumptions about your personal life, but I feel pretty comfortable asserting that if you are chronically ill like me, there’s a darn good chance you’re broke like me.
- Reading is a blessed distraction. From pain, from the fact that yet again you’re sitting in a waiting room, from the fact that you’re broke (see #1 above).
- This one is less a reason and more of an observation: Doctors love to see their patients reading. I’m telling you, doctors will walk into the exam room, see that you’re reading, and all of a sudden they find you intelligent, interesting, and worthy of respect.
- It’s a great way to rest your body when your mind does not really feel like resting.
- With the right person, it can be quite fun to chat about the plots of the books you’re currently reading. Especially helpful on dates.
- As well as books your library probably also offers: Free Wi-Fi and use of computers, audio books, large print books, magazines, newspapers and DVDs of both films and television shows. Because sometimes, even a Redbox rental isn’t in the budget.
A free public library card, however, is always in the budget.
Along with major emergencies, chronic illness gives us many days with situations that are worse than an inconvenience but less than an outright emergency…such as having to rush home from work because of violent GI problems or having an appointment that involves things more invasive than just looking down your throat with a tongue depressor. Despite the fact that these instances can be extremely frequent, they’re never quite feel commonplace.
The years I spent getting acclimated to being chronically ill – and by that I mean, like, the first 8 years – I felt as if nothing else can could get done on these days, nothing could be enjoyed; it was declared a disaster, and a total loss.
I look back now and realize that a lot of that was emotional. I felt guilty for going home from work early, I felt embarrassed I couldn’t stay for the whole baby shower, I felt angry and despondent that part of my day was interrupted by something inconvenienced or unpleasant. So I plunked down on the couch and lived the Sick Girl part well all day and night.
Sometimes we are really so sick that the day is a wash – which in that case – staying in bed all day is totally the best and only course of action! But with my illness, there are often days that feel like an emergency room disaster and then gradually improve to a kind of icky/painful stay at home day instead. And the difference between me now and me in the beginning of my illness, is that on those days, I’m able to move on emotionally and mentally. Which is much more enjoyable and productive.
Some examples. Just because I had to cancel lunch because I’m on muscle relaxers and can’t drive doesn’t mean I can’t clean out my sock drawer or write a bunch of thank you notes. (Although I wouldn’t mess with too many big words, because as my first rheumatologist used to say, “The only muscle these things actually relax is the one between your ears!”) Or just because you had to come home from work due to that violent bout of violent diarrhea doesn’t mean there’s anything wrong with later in the day catching up on your house cleaning. (It would be bad form to hit the mall though, you just know you’d run into a coworker there!)
I think we often call a day a wash when it isn’t because we’re a little traumatized by the minor emergency (some things you just never get use to), we feel guilty that we had to cancel working/parenting/whatever the original plan was, OR we feel we must play the role of a proper Sick Person so that others know we really are sick. This last reason is especially relevant if people close to you don’t understand your illness or are still in denial that you need special accommodations. That just sucks, I’m sorry if that’s your situation.
But once the people around us have caught up with reality, (or you’ve just moved your reality away from them!), it’s really quite something to be able to move on from a hellish midday and actually have a slightly productive or slightly fun evening at home. (Again, hat’s only if you’re physically up to it, of course.) It’s emotionally healthy because it stops the illness from controlling your whole day, and often it’s physically healthy as well because if you sleep ALL day, your sleep patterns could get all thrown off.
My mother was talking to a friend on the phone, asking about a surgery the friend recently had because of the breast cancer she’s fighting. The friend’s surgery story ended with something like, “…and I didn’t have to stay overnight, so I left the hospital and stopped at the Armenian Market on the way home.” I thought that was so great, and a perfect example of not letting the disease own every minute of your day.
Here’s a picture of me during my 7 minute reading Thursday night at the Currier Art Museum in Manchester, NH. It went well, meaning – people laughed when I’d hope they’d laugh and didn’t laugh other times. My mother described my piece as a combination of my little book and my article in the latest issue of The Pillow Fort, which I appreciated because I suppose that’s what I was going for.
Some time ago I wrote two posts as part of my “Running List of Extremely Part-Time Jobs” here and here. On that same theme, I’d like to direct you over to the clever blog “Let’s Feel Better: Dragging Dysautonomia Through My Twenties one Bitchy, Blunt and Belligerent Blog Post at a Time.” (Love that title, cracks me up every time.) Yesterday Blogger Illana posted a great article named, “Working From Home: Jobs You Didn’t Even Think Of!” It was solution-focused, which I love. Not that one solution works for everyone of course, but I like the atmosphere of brainstorming solutions. Well done.
My landlord received a catalog in the mail the other day which caught my eye because it was from a company named Solumbra who specializes in clothes for people who need to hide from the sun – alert the Lupus community, right?
Well, after paging through it, I would say alert the wealthy members of the Lupus community.
This very lovely lady’s outfit comes to $362.80 Contrary to what you believe, that does NOT include her shoes OR even one hour of labor for the team of landscaping guys who keeps the path to her bungalow looking so neat but at the same time so luscious. Nope, just the outfit. Which, if you’re like me, you’d spill things on within the first week of owning it.
So, no, I will not be spending 2.5 car payments on this outfit. But I’ll tell you what – if I win the lottery – I mean really big – I’ll track down that landscaping team and send them to y’alls houses for one week each. Because whether you’re photosensitive or not, WE all know that landscaping probably doesn’t even appear on our list of priorities and even if it does those big-ass rocks that make up the path to her bungalow aren’t getting moved by any of US. I put the catalog back in my landlord’s mail basket.
In my little book I talk about how how I’m all for prunes to solve the constipation that often comes with chronic illness or is medication induced. Prunes are all natural and MUCH less expensive than some of the OTC pharmacy aisle remedies (yes Miralax, I am talking about you!)
Lately I’ve been gettin’ wild and going with prune juice instead of whole prunes. But gettin’ wild often comes with a price and last week I bought the wrong prune juice and it tasted AWFUL . Like, so bad I threw it out. And I’m really cheap, so that’s saying something.
So if you feel like getting’ wild in the prune juice aisle, I want you to know, that in my humble opinion….
The yucky stuff looks like this:
The yummy stuff looks like this:
Fun fact: prunes are dried plums. Hope this is helpful! (the whole post I mean, not just the fun fact)
Yesterday’s outfit and post were centered around the wish to avoid the pain caused by bras for people with chronic illnesses involving muscle soreness, muscle spasms, extra nerve sensitivity, etc.
Today I must share with you a video that was sent to me last night by my friend Liz. The lady in the video demonstrates how to take a large scarf and turn it into a drapey shrug/vest that perfectly conceals any evidence of…well, as I mentioned yesterday, it starts with an “n” and rhymes with “ripples.” Here’s the video:
After watching the video, I immediately went to my scarf drawer and picked out a couple that I really like but never wear as scarves and with some adjusting here and there – I had three new tops! I’m still amazed when little “fashion hacks” actually work. Here’s some pics of my results.
I did the first two just like the video showed. This last one is made out of a thick knit so the knot ended up being enormous. I’m currently working on replacing the knot with some safety pin and/or a few sewn stitches.
Those of you who have a chronic illness involving muscle pain and/or extra sensitivity know that straps are problematic. Bra straps, purse straps, halter top straps, and God forbid – backpack straps. I will go out of my way to avoid all these. Hence my rolly (that’s not a word but it’s maybe it should be?) backpack.
When I must wear a bra (somedays considered a torture contraption), I’m very picky about the style. When I find one that works, I buy it in every color. Wal-Mart had a great $5.00 bra I wanted to give y’all a link to, but apparently they no longer sell it. Sad face.
But most of the time I avoid wearing a bra. BUT my mama brought me up to be a lady so those days I have to put some effort into hiding…you know…the word that starts with an “n” and rhymes with “ripples.” Here’s today’s outfit. This is a $10 dress from Ocean State Job Lot, made out of an incredibly soft material, and this $6 drapey vest from Burlington Coat Factory provides just enough of another layer of fabric to be decent. I stayed cool, avoided muscle spasms and wasn’t embarrassed when my dad and niece stopped by for a visit.
Hope this is a helpful post for someone out there whose in the same pain boat as I am.
Last week I wrote about How I “clean” the bathroom when I’m not feeling well enough to actually CLEAN the bathroom.
Well, this is a week where I’m not doing ANY cleaning. A couple slightly busy days in a row have exacerbated GI problems, weakness and dizziness. So housekeeping is a low priority and I don’t feel bad about it at all. (She wrote with a wry smile.)
But I did want to post about how I “clean” the kitchen during those in-between weeks where I’m up for a little cleaning. Or rather, a few tactics that make it look like I did some cleaning.
- Empty the sink and dish dryer of ALL dishes
- Clean everything off the counters besides those appliances which live there
- Take everything old or non-essential off the fridge (for some reason, that makes a huge visual difference)
- maybe sweep the floor (less arduous than vaccuuming)
- get someone who’s strong to take out the garbage
- if need be, spray some Glade “Fresh Linen” air freshner
Written by AshleyJane Kneeland, who can be reached at firstname.lastname@example.org
Unfortunately, it is an incurable illness which can be fatal if preventative measures are not taken. One of the many manifestations of the disease is called “photosensitivity.” This is where exposure to bright sunlight causes flares of painful and potentially dangerous symptoms of the disease.
(By AshleyJane Kneeland, who can be reached at email@example.com)
Here are some of the highlights of the HealthCentral Anti-Stigma Tweet Chat I participated in yesterday (my first ever tweet chat!) They’re in no particular order, as I took screen shots of some of my tweets and my favorite tweets of others. To read all the tweets, search for #HealthTipsChat on Twitter.
Here’s a very well-written concise article about chronic illness over on “HuffPost Healthy Living”
- Using a 409 type cleaner and paper towels, clean the sink and back of the toilet
- Windex the mirror
- Wash or at least vacuum bath mats (This is totally a visual trick – for some reason it makes the whole room look cleaner.)
- Maybe sweep the floor (less strenuous than vacuuming for me)
- Spray Glade Clean Linen air freshener
Props to PetSmart today. When I walked in I (hesitatingly because I’ve never done this before) asked if there was anyone who could help me with the heavy kitty litter? All I said was that I had a muscle condition and it was hard for me to do myself. I figured they’d just lift it into a cart for me. But the young guy who helped me carried the bag (42lbs) to the cashier, waited while I paid, and then carried it out to my car.
So now it’s 5 hours later and I’m not in horrendous pain from muscle spasms – thank you PetSmart!
Lesson: Don’t be afraid to ask nicely for help – and a short vague explanation suffices just fine. (I’m sure they did not want to hear all about my health condition any more than I wanted to share it.)
This is the kitty I was shopping for – I’d do most anything for him, but why pay for an incapiciatating muscle spasm if you don’t have to, right?
Yesterday Christopher, his daughter, and I took advantage of free admission to the Strawberry Banke Museum in Portsmouth, NH. I knew I’d be doing some outdoor walking between touring the historic houses,
so I got dressed strategically that morning. Anyone who is sensitive to the sun due to Lupus or medications knows that it’s a battle between staying covered and staying cool. (I figured my parasol would be cumbersome to open and close at each and every building.)
I got the light, silky, slightly sheer top on clearance at Old Navy (for my purposes, I got a size XXL). I was wearing it with just a little bralette type thing, but if you’re looking to be more modest you can wear a strappy tank top underneath. The pants are also from Old Navy, they’re called Pixie Style and I like them because they’re very stretchy. I love me an oversized shirt and some stretchy pants, no matter what the season. The hat was a find (from Target) because I have several large beach hats but they seem to block my vision half the time and I can’t wear them in the car. This little 40s style hat shades my face but is small enough that you almost forget you’re wearing it. In the car I cover my hands and feet with a light white scarf wrap while I dream of a car with tinted windows.
Took me years of uncomfortable outfits and flared-up symptoms before I figured out outfits like this to keep me protected and cool, yet still feeling like a semi-stylish young person. As they say, better late than never. To me, that’s what my blog and my little book are all about – things I wish I’d figured out right away when I first got sick. I really hope my writing saves someone else time, energy and avoidable flare-ups of their own chronic illness.
The Lupus Foundation, in all its wisdom, has a great page on its website entitled, “How do I explain Lupus to others?” Now this is something I really appreciate. It’s gives practical advice to a question many of us have fussed over in our heads. Figuring out what to say to common questions ahead of time allows you to say nothing more, nothing less than you’d like. In my little book, I call them “Talking Points” because that’s what the Press Secretaries called them when I worked on Capitol Hill. As in, “Get me a copy of the Senator’s talking points on Afghanistan!”
Here’s some particularly troublesome questions I’ve been unprepared for over the years:
- How do I tell my boss I can’t come in today because I have 12 Lupus lesions on my lady parts – and NO they are not from an STD!
- How do I extricate myself from a conversation with a person denouncing “people who are on Disability but still manage to have hobbies”?
- How do I tell my partner, without being mean and martyred, that unlike him I do not announce all the pain I feel, and contrary to him, I actually get quieter as the pain gets worse? (Love you babe!)
Now, I want to hear your troublesome questions. I’m sure everyone has some really interesting/funny ones unique to their own chronic illness experiences. Join me and reply in the comment boxes below!
I will be speaking about living “incurably” at the Currier Museum of Art in Manchester, NH on August 7th.
Earlier in the spring, the Currier presented a new exhibit – a series of paintings by Romare Bearden based on the famous epic, The Odyssey. The Currier accepted submissions for a program called “Swappin’ Stories” (based on the old NPR show, The Moth Radio Hour) describing one’s own personal journey, or odyssey.
My story is based out certain selections from my little book and was chosen amongst others to be shared at the August ‘Currier After Hours’ event. Christopher, Sierra, and I went and saw the exhibit when it first opened. Here’s a few of the paintings in the exhibit.
In my ongoing effort to increase my participation as a “Health Advocate,” I have created a profile on WEGO, a social network of leaders, bloggers, and tweeters to strengthen Health Advocacy. I also signed up for the WEGO Health Press Corps and, should they ever need me, to be a WEGO Health Activist Speaker. Attending a conference or speaking at an event would be a really great experience. I certainly have things I’d like to say about being young and chronically ill!
I also signed up to be an Arthritis Ambassador through the Arthritis Foundation. An ambassador commits to 2 hours/month; one hour is training via a webinar and the other spent completing an assignment that furthers the Arthritis Foundation mission and raises awareness about the many different conditions that the Foundation encompasses.
Two other organizations I would love to get involved with are the American Autoimmune Related Diseases Association and, of course, the Lupus Foundation of America. Unfortunately, NH does not have its own Lupus Foundation Chapter.
I was reading about CreateSpace today during a break –
(This was before the onset of some violently painful G.I. symptoms which caused me to call down to the office frantically and pitifully abandon the Kindergarteners I was supposed to be librarian-ing to. One of the things I hate most about being chronically ill: having to tell the person in charge that your too sick to stay the rest of the day. I’m used to it by now, as I’m sure many of you are, but I hate that feeling.)
– anyway, I am considering the future possibility of selling my little book in a printed-on-demand form (in addition to its current Kindle format) with this Amazon-owned company. Exciting for me to think about!
(a few of the promotional copies I got printed up recently – not cheap!)
Due to sore muscles that are very prone to spasms, carrying anything is a big obstacle of mine. If a bra or purse strap hurts like hell, then a backpack or any kind of heavy handled tote has always been a nightmare. So over a decade later, I now feel like an idiot that it took this long to find this solution. Only $19.99!
This will be perfect for things like taking Christopher’s daughter to the local pool. It’s maybe a 2-block walk and I like to bring a bunch of stuff with me to camp out in the shade with (towel, book, snacks, etc). She has her own stuff to carry so now I can roll along with her. Here’s hoping that’s not too embarrassing for her.
I broke it in this weekend at the NH Walk to Cure Arthritis, where I handed out Living Incurably Goodie Bags. It worked great, I outfitted the back with zip ties to attach a camera, water bottle, and parasol.
The event raised a lot of money for the Arthritis Foundation, which is wonderful. Despite all my layers of protection, however, it was way too sunny for me and have been feeling very sick ever sense. BUT despite that, I’m feeling very victorious that I found a solution which allowed me to transport stuff without a helper. So, feeling like a bit of a dreadful sick Lupus patent today – but a dreadful sick Lupus patient with wheels that make her a little more independent! I look forward wheeling somewhere else soon – but in the shade.
As I lay in bed last night an absolutely awful muscle spasm started in my jaw, spreading to my neck and into a headache. I got up, did every thing I could think of that might help and lay back down feeling very miserable, alone – a martyr in the dark.
Soon my very large cat Gill Pender starts slowing crawling up from the foot of bed. Gill sleeps most nights cuddled around my foot, but never really cuddles on my torso like I so wish he would. So as he climbs up to my chest, I choked up and started thinking my wonderful cat had identified my moment of need and was coming to comfort me, God bless him…….until he reached the head of the bed and started ZEALOUSLY LICKING every spot I had applied Icy Hot to.
(If you’re not familiar with Icy Hot, it’s an OTC pain-relieving ointment similar to BenGay.)
I felt betrayed. Betrayed by what in a human, we would consider a chemical substance abuse problem. Disappointed in life, I pushed him away only to have him reappear out of the dark a minute later even more determined to have whatever hopped-up experience a cat gets from an Icy Hot fix .
It tickled, he was purring loudly in my ear and the whole thing was suddenly funny. My giggling hurt my jaw something awful but it was worth it anyway.
While substitute teaching today I used the parasol I blogged about the other day during my two outdoor recess duties.
Friendly staff members and shy little girls coplemented the fancy designs (the edge of the parasol has both lace and sequins) but my two favorite interactions were:
1) A group of tiny but testosterone-filled boys strutted up and asked to borrow it. In all fairness to their manhood, it was a VERY sunny day.
2) Another group of boys stood nearby and finally sent one brave messenger with a big smile to ask if I was a vampire. (I told them they’d have to figure that out on their own. Give them something to think about next time I’m at the front of the class and they’re wondering if they should try to get away with being fresh.)
Loss can weigh you down if you don’t recognize it (perhaps you have heard that the stages of are the same as the stages of grieving – denial, anger, grief, bargaining, acceptance) and process it (I so recommend seeing a counselor on a regular basis.)
This poem talks about loss. I’ve liked it ever since it was assigned reading in my AP English Class. I like how she recognizes loss is no trivial thing, referencing a house, or worse yet, a person, but at the same time uses a light tone of voice, referring to loss as “an art. ” Hope you like it. Maybe you’ll want to hang it on your wall too.
The art of losing isn't hard to master; so many things seem filled with the intent to be lost that their loss is no disaster. Lose something every day. Accept the fluster of lost door keys, the hour badly spent. The art of losing isn't hard to master. Then practice losing farther, losing faster: places, and names, and where it was you meant to travel. None of these will bring disaster. I lost my mother's watch. And look! my last, or next-to-last, of three loved houses went. The art of losing isn't hard to master. I lost two cities, lovely ones. And, vaster, some realms I owned, two rivers, a continent. I miss them, but it wasn't a disaster. —Even losing you (the joking voice, a gesture I love) I shan't have lied. It's evident the art of losing's not too hard to master though it may look like (Write it!) like disaster.
When I happened to peruse this book, Organizing Solutions for People with ADHD, I got some very helpful tips that surprisingly apply to chronic illness patients as well.
It caught my eye because some in my household deal with ADHD obstacles which seem to be incompatible with my many organizational systems. The same clothes were worn over and over, nothing got thrown out, and there were piles of things everywhere. Drove me nuts. Plus, my own systems ended up being a lot of work for me and my tired/sore body.
I was impressed with this book because not only did this book explain the ADHD mind and its challenges, it also gave some very practical suggestions that could help chronic illness patients manage their households as well.
I think there’s a crossover effect between the two issues because people with ADHD need simple, short systems with fewer choices while chronically ill people benefit from this as well because they have diminished energy levels and often “foggy” minds tied to flares and medications.
The author wrote that systems need to be realistic, which meant me abandoning some of my elaborate plans in favor of systems that speak to other styles of thinking and my not-so-healthy days. At first it felt like a big compromise, but it resulted in greater harmony and less energy being expended on trivial stuff, so of course it’s worth it.
Here are some of the specific tips the author touched on:
- Lots of people who hold onto an ideal of a perfect aesthetically pleasing house/apartment achieve that once every two months and the rest of the month(s) it’s an unorganized mess. Go for practical instead and have a home that looks organized most of the time, if not fancy and lush. Abandon complicated decorations, systems and decorations that require daily energy.
- Compromise to make realistic systems. You may want to tuck your laundry basket away in a hidden corner, but if it results in you/others leaving dirty laundry all over the bathroom, then give in and put the laundry basket out in the open where it will actually get used.
- Why fold your dish towels? Energy wasted. Get a basket and just toss them all in.
- Abandon complicated and fussy beds. No tiny little pillows. Two pillows to sleep with and two large decorative pillows matching the comforter will look just as put together. Get a thick bulky comforter so you don’t have to mess with the sheets, just pull the comforter up and you’re good.
Very convincing book. Check out if your library has it!
PS. If one of you in your marriage has ADHD, I recommend this book as well. I was definitely ignorant regarding ADHD – it’s way more complicated than just having a hard time focusing.
If you’re like me and need to hide from the sun (from Lupus photosensitivities, medication sensitivities, migraines, etc.) you’re probably just as sick as I am of wearing hats (I loathe hats) and long-sleeved clothes (especially when it’s hot) just to walk around outside in the warmer months.
Well, it only took me about 8 years, but I finally came up with one solution that I like – a parasol, a small umbrella to keep out the sun instead of the rain. Doesn’t mess up your hair, keeps your whole body in the shade, and lets you wear the clothes you’d normally only wear inside out of the sun.
Here’s a photo of me, back when I was a brunette, using my parasol. Just now I typed “parasol” into Amazon.com and got all these results. And if you’re trying to avoid such a “girly” look, there’s some more neutral colors and styles here and here and here.
Hope someone out there finds this idea as useful as I did!
Christopher, being the nice guy that he is, hopped on Amazon to add a review to his purchase of my little book. Amazon rejected his review because they could tell via my Amazon account that he and I are connected (by mailing address, I assume). Which is too bad that he didn’t get to help it keep a 5-star rating, but on the up side – we should all be reassured that Amazon is cleverly checking out reviews to make sure they’re legit. So when you look over the 47 reviews of that iron you’re considering buying, be reassured that they’re not all written by people coming from the same address with different accounts.
On that note, if any of you bought my book and enjoyed it, I would love it if you reviewed it for me. If it offended you for some reason, I would most appreciate an email instead of a 1 star review – recently someone emailed me their concerns instead of rating me with 1 star and I thought it was most decent of them. I’m sure they are going to have good Karma down the line.
To write a review on Amazon, you go back to the item, in this case, my little book, and scroll to the bottom where it says Customer Reviews. At the bottom of the Customer Reviews section is a button that says “Write A Customer Review.”
In the little book I put together, Living Incurably Despite Chronic Illness, (shameless plug, once again) I wrote about what I call “Talking Points,” or pre-crafted answers to tough questions. We’d all like to be able to say no more, no less than needed when put on the spot but that rarely happens to me, so instead I pre-package my answers to common questions/comments ahead of time.
So I was delighted when I came across this March 24th post on the blog, Freckles & All. Faye wrote about having a “trusty little script” that she uses when she is talking about her illness, CFS/ME. I was very glad to find out I’m not the only one who prepares ahead of time! Great post, thanks for the reassurance Faye!
And the most thoughtful review of my little book over on the blog, “Freckles & All.“
I recently read this post on the blog Finding Freedom With Epilepsy about a young man in Cameroon (which is located in what I would pretty ignorantly describe as central west Africa) who is trying to change the way Epilepsy is understood and treated in his country. Epilepsy patients there, such as his sister, face a lack of treatment resources, a lack of disability rights, plus the common belief that seizures are caused by evil spirits. It’s hard to get treatment, it’s hard to work or attend school safely and there is a widespread belief that something about you is being controlled by dark forces.
Reading about this, I feel pretty ridiculous about my occasional whining that I have to drive all of 9 minutes to get to the Target pharmacy to pick up my practically-free-of-cost prescriptions. And that I got completely outraged yesterday when I came across a blog post that dared to suggest Lupus is caused by emotional problems.
(One of the emotional problems this post mentioned was “shyness.” Listen, I am open to all kinds of theories as to what wakes Lupus up in some people but I can guarantee to you that it was not shyness that got me sick. I’m not going to even give a link to this blog because I don’t want to give them any more attention than they already get. The blogger is probably Scientologist, and by saying that I just opened myself up to the danger of the Church of Scientology spamming my public email account until it no longer functions. They actually do that as a practice to punish naysayers.)
Yes, my periodical whining is pretty darn ridiculous compared to the battle epileptics, and I imagine other chronically ill patients as well, have to face in other parts of the world and my heart goes out to them. Today being Memorial Day in the United States, my heart is also grateful for the men and women who have fought to make our country such a safe and stable place, a place where I have my choice of doctors, accessible medications, and am so spoiled to have limitless internet where I can publish the little book I have dreamed about for years, and then receive such warm support from you folks.
Happy Memorial Day and bless those whose service keep me in such spoiled comfort.
There are countless studies proving that getting enough sleep is key to managing a chronic illness. For that matter, it’s the best thing anyone – healthy or not – can do for themselves. Productivity, susceptibility to infections, weight loss, mood swings, anxiety, even your appearance – they’re all drastically affected by the amount and quality of sleep you get.
I myself often have trouble falling asleep due to pain and then once I do fall asleep, I often have “night terrors.” Whether I remember these screaming and hullicinating episodes or not, they prevent me from getting deep, restful sleep. If you have sleep disturbances or if you’re still tired when you wake up in the morning, try making some nighttime adjustments – they can make a big difference. Here are the accessories I swear by:
Sound Machine to block out any nighttime noises that may wake you or disturb you during deep sleep…
And I’ve already mentioned the Snoogle….
And deep sleep requires a dark room, so make sure you’re blocking out the light from passing cars, street lights, etc with some roller shades or heavy-duty blinds…
I cover all those little glowing lights on my electronics with a little square of black electrical tape…
And, during the winter I swear by this humidifier. It prevents your sinuses from drying out and thus prevents sinus infections, dry cough, etc…
I find it annoying that Apple and Amazon Kindle don’t play together well. But I don’t want to complain too loudly because at least – with a little nudging – they will agree to coexist together.
Here’s how to make it work:
1. If you don’t already have it, download the free Kindle app. This first time you’ll need to set up an account that links your amazon purchases to this iPad Kindle app.
2. Using your browser (but not the Amazon app) go to Amazon.com and search for the ebook you’re looking for, probably my book, right? (hint/nudge) and click on “Buy now” (only $2.99? what a bargain!). Just this first time, you will need to enter in your debit/credit card and the email address that you registered your Kindle app with back in step 1.
3. The amazon.com page will confirm that you want to send it to your iPad app.
4. Switch back to the Kindle app and your book will download.
5. Next time you want to purchase a book, you’ll still have to use your browser to go to Amazon.com but it should remember your payment/Kindle account info.
Hope that’s helpful and happy reading!
Mission Complete. All I wanted was one stranger to come away from reading this little book and feel at least slightly uplifted or slightly less alone. I got this tweet and felt successful. Celebrating.
I struggle with my sugar consumption. It’s yummy tasting, plus I crave the little “high” it gives when I’m fatigued or headachy. But the crash afterwards feels just awful and this year I found out that sugar also feeds any kind of yeast imbalance in your body. I failed miserably at being “sugar-free” so now I’m focusing on being “low-sugar” with an occasional cheat. For example, yesterday I cheated because my book is finally available on Kindle.
To put what I call “low sugar” in perspective, here is the sugar content for two of my favorite sweets:
Milky Way Candy Bar – 31 grams of sugar
1 cup of Friendly’s Forbidden Chocolate Ice Cream – 26 grams of sugar
Here are two alternatives I feel less guilty indulging in on a regular basis:
Peanut Butter Chocolate Chunk Balls
This recipe was originally passed on to me from someone else’s blog, but since then I have made it my own. Each bite tastes like a crunchy raw cookie dough. A regular batch of chocolate chip cookies has 1 1/2 cups of sugar, plus the sugar in the chocolate chips. These have 3 teaspoons of sugar in the whole batch.
1 cup oatmeal
1 cup rice crispies
1 cup peanut butter
1 teaspoon vanilla extract
1 teaspoon white sugar
2 teaspoons brown sugar
1 Lily’s Chocolate Bar (they sweeten their chocolate with Stevia, not sugar), chopped up into chips/chunks
Mix ingredients together well. Cover and cool in fridge for at least 30 minutes. Form into bit-sized round balls (I use a cookie dough scooper). Keep in a tupperware container in the fridge.
As my fiancé says, these taste like a soft Oreo cookie.
Cool Whip (2 grams of sugar per serving)
Nabisco Chocolate Wafers (about 6 grams of sugar in a serving)
Alternate a wafer with a dollop of Cool Whip. You can build upwards to make mountains about 3 layers deep or sideways in a casserole dish. Cover and store overnight in the fridge to soften. Serve with cut up strawberries for a beautiful visual presentation. Keep leftovers in the fridge.
For those of you who are able to eat Splenda-type products without having GI problems, I envy you, because these cookies below taste amazing.