The Horrifying Truth

It was a freezing cold morning, and I was lying in my nice warm bed, waiting for the coffee my son had offered to bring me.

He was taking an unusually long time, and I thought back to our conversation.

As well as offering me coffee, he'd asked me to cut his hair (he hasn't had his hair cut in about 12 years) and talked about the upcoming taekwando competition (neither of us has done taekwando since before his last haircut.)

The whole conversation had been an hallucination, or possibly a dream.

That's when the horrifying truth hit me. There was no coffee being made!

Lupus is Sexy Too

This email I received was just so awesome in so many ways, I'm just going to give reprint the whole thing:

Hello!

My name is Genevieve Flati and I am the creator/director of a show called "(Wo)men Rule Broadway." The show is a musical theater review where women perform roles that were originally written for men. But, we perform them as women.The show went up last year, and we were super successful. We sold out every show, with a high demand for more. We had Tara Strong and Eg Daily as our featured celebrity guest performers. (Powerpuff girls, Rugrats, Harley Quinn, etc.)

The concept came from a lifetime of being in entertainment, and seeing that most of the "good" roles went to men, while the women were stuck with the boring songs, side romantic plots, and overall uselessness (except to be objectified and overly sexualized). There ARE amazing roles that express all parts of human nature (Alexander Hamilton, The Phantom, Elder Price, etc), and even though I am a wooooommmaaannnn, I am still a fully complex human with more to me than "O look at that man! I hope he notices me and rescues me from my predicament!"

I wanted to give opportunities to women that have been previously denied because of their gender and/or race. I was tired of waiting around, hoping that someone in a position of power would recognize all of this untapped talent in these women and POC. Eventually, I realized that I was someone, and decided to put myself in a position of power, so I could do just that for the women around me.

In April of 2017 I had a huge medical attack and was diagnosed with lupus. It's an autoimmune disease where your immune system is overactive and attacks your organs. Essentially, your body is trying to kill itself.

As there is no cure, they battle it by putting you on chemo. I have been on weekly chemo treatments every Friday since April, and still have a ways to go. (CHEMO FRIDAYS ARE EVERYBODY'S FAVORITE DAY, YO.)

I was unsure of what I wanted to do about this for a long time. I only told a few friends and family. But, as I am a sociopath, I was like.... "Ok, so what am I gonna do with this?" The answer, of course is... A FREAKING SHOW! YAS KWEEEEN!

So, my Co-Creator and I discussed it for a while, and I said that I wanted to do another Women Rule Broadway and we will donate a portion of our proceeds to a lupus research foundation. (Last year we donated to The Downtown Women's Center)

SO THIS YEAR WE ARE DOING...

(Wo)men Rule Broadway Presents: Lupus is Sexy Too!

https://www.youtube.com/watch?v=-PpTyEdgsRQ&t=1s

Only this time, WE ARE ADDING MEN INTO THE CAST because feminism is about equality for everybody, and men have their own stereotypes/societal pressures to deal with as well.

Please please please help us spread the word about our Kickstarter and our show. We want to fight racial and gender stereotypes in Hollywood, society, and the media. We want to raise money for a disease that many people (including Selena Gomez, Nick Cannon, Michael Jackson, Lady Gaga, and more!)

So we are doing: (Wo)men Rule Broadway Presents: Lupus is Sexy Too!

The name comes from the fact that when you tell people that you are on chemo, they usually get all hot and bothered and say:

Them:  "Oh my god, you are so brave and wonderful for being on chemotherapy..."

                          *heavy breathing* 

              "If you don't mind..."

                         *they stroke your hair, all turned on by your tragedy* 

            "what kind of cancer do you have?"

Me: "O, I don't have cancer, I have lupus, but I'm still on chemo-"

Them: *OUTRAGED* "YOu DoOnt have CANCER?!?! Who cares about your NONCanCER disease!?!?! GET OUT OF HERE YOU HOBO!"

SOOOOOOO....

I want people to know that LUPUS IS SEXY TOO. We want your pitty sex too. Give it to us.

OH, and, I want to help make the world a better, less racist, less sexist place for everybody. That would be great too.

I hope you can help me get the word out about our show!

Thank you for your time!

Genevieve Flati

What can I add to all of that except - is there some wealthy person out there who would sponsor my trip to America to review this?  No? Never mind.  I'll just be happy knowing this is going on...

The Tooth, the Hole Tooth, and Nothing...

It should have been a good thing. My son and I went to the movies to see the new Guardians of the Galaxy movie.  It was great - especially Baby Groot.

What was not great was the popcorn - I bit on a hard an unpopped corn kernel.  I felt a filling in my tooth crack.  Because it was a busy week, I thought dealing with it could wait.

Two days later, the filling simply fell out. So I called the dentist.

It wasn't good news.  It wasn't just the filling that cracked, it was the whole tooth, down to the bone.  After a couple of needles, and lot of pushing and pulling it was good-bye tooth.

So now I'm recovering with a stitch in my mouth, and apparently my options going forward are to leave a gap or get an implant.  In the back of my mind I see dollar signs flying around.

The lesson?  I'm never eating popcorn in the dark again.

Look after your teeth lovely lupies.  We have enough health issues without dental issues as well.

I've received a few tips for the World Lupus Day project, would love to have lots more.

Just email me, iris@sometimeitislupus.com, with your name, country, and what you would say to someone newly diagnosed with lupus. I'll put everyone's comments in together for a resource for people newly diagnosed.

Want to support this blog? (And maybe help with my tooth situation?)  You can become a sponsor for a dollar a month. www.patreon.com/IrisCarden

I'm home

Here's the photo I wasn't able to put on the
United Nations of Lupus post while I was away.
This was the meeting of representatives of
lupus groups from around the world, the day before
the Patient Information Day at Lupus 2017.

I'm home.  For a little while I wondered if I'd make it.

If you're in Australia, you've definitely heard of Tropical Cyclone Debbie. That didn't come anywhere near my area.

But what happens after a cyclone has crossed the coast and burned out most of its energy, is that it turns into a rain depression.

Lots of rain, with flash flooding, and often further flooding once the water all moves its way down the rivers, starts to move generally southward.

So after the eastern side of North Queensland suffered the effects of a severe cyclone (Debbie was Category 4, the second-highest category there is),  North Queensland, and very quickly Central Queensland received a great deal of rain.

By yesterday, when I was travelling home, the rain depression was reaching South East Queensland.

View from the train.  This is usually a tiny creek,
not a river.

So while I was waiting at the airport - my plane was delayed, the a flight to the Gold Coast (further south than Brisbane) was cancelled, the flight after mine to Brisbane was cancelled, and other travellers and I were starting to speculate on what we would do if ours was cancelled.

About that time I told my family members not to drive into Brisbane to get me, I would catch the train to Ipswich, rather than have them drive on potentially flooded roads.

Other friends offered me places to stay in Brisbane in case I couldn't get to Ipswich.

As it turned out, my flight did eventually take off.  We got into Brisbane just before the worst of the rain. By the time I got back to Ipswich the rain was coming down hard.  I was absolutely saturated walking from the train to the car. But I was still home before the worst of it.

Percy, recovering from his bath.

As it turns out, I wasn't the only one to get a bit wet.

My ragdoll cat, Percy, had an adventure of his own.

Percy has a routine.  He gets up in the morning, and goes to sleep out in the back yard in the sun, or in the gazebo if it's too hot in the sun.  Then he comes inside to eat, and moves to the couch to sleep, eats some more and goes to bed.

With the rain, going out to the back yard was a much messier affair than usual - so much so that when he came inside, my son found it necessary to give him a bath. (Percy does not like baths.)

So now I'm home, and just about recovered from the journey.  My brain and my notebook are both over-full with news from the conference.

I've got so much to tell you.  Over the next couple of days you're going to see a heap of posts about the conference, but you'll also notice the links to support and information on the Links page getting bigger, as I add in some of the amazing resources that I've found out about.



Update.

This is what the creek near my place looks like normally.

This is what it looks like now.

The water was just below the bridge when I got home last night.  (Crossing the bridge was a part of getting home.)

This sign that says "Use Other"  said "Use Other Footpath" before I got out my phone to take the photo.

Passwords and Brain Fog

lupus.cheezburger.com

You know what it's like.

You go to an on-line account you use all the time, and instead of just logging you it, it asks for your password.

If you're thinking clearly, you might remember it. If you're suffering a bout of brain fog, you're probably stuck.

Some people get around the problem by using the same password for everything.  The problem with that is it's not very secure.  If someone gets hold of your password, they can get into all your accounts everywhere.

Here's another option, one that I learned from my tech-savvy son.

When you have to create a new password: think of a phrase, or a song or book title that you are going to remember.

For those of us with brain fog, I'd add to think of something that has a relationship, at least in your mind, with the thing the password is for. The link will help spark your memory.

So, say you need a new password for your Google accounts.

The word "Google" might make you think of a googley-eyed monster.

Take your phrase and remove any punctuation or spaces, so now you have googleyeyedmonster.

Good passwords have a capital letter or two in them.  So now capitalise the first letter of each word and you have: GoogleyEyedMonster.

Good passwords also have a number or two in them.  An easy way to do this is to replace some of the letters with numbers that look like the letters. Let's change each lower case "e" to "3".  Now we have Googl3yEy3dMonst3r.

Because the phrase is related to what you're using the password for, you are more likely to remember it, and it's quite a secure password because it's long, contains a combination of numbers and lower and uppercase letters, and is quite difficult for someone else to guess.

If you have an Instagram account, you might decide it's a File0fPh0t0s. You might think all the drama your friends share on Facebook is a bit like a Shakespearian play and have a password like AlasP00rY0rrik. Your bank account might make you think of an old ABBA song: Mon3yMon3yMon3y.

Of course, if you do all of that and still forget, write your passwords down.  Do not write them on scraps of paper you leave lying around, or in a notebook you keep with your phone in your handbag (because when your handbag gets stolen the phone and the passwords are enough to get someone into all your accounts.) Write them down in a password saving app on your phone or other device.  (You can get quite good apps that save passwords securely for free.) But make sure you remember the password or access number for the app.

And don't use Googl3yEy3dMonst3r as your Google and Gmail password.  That one's taken.  (Just kidding.)

Wisdom of the Ages

lupus.cheezburger.com

Early to bed, early to rise ... makes a lupie exhausted.

Hair today, gone tomorrow.  (Where is it? Oh, the brush, the drain, the couch, the bed, everywhere except my head.)

A stitch in time ... will probably get infected because of my stupid immune system.

Out of the frying pan, into the fire - oh no, it's just another fever.

It's always darkest ... when random pains wake me up, disoriented in the middle of the night.

A friend in need ... is another lupie wanting to know how to cope with the latest surprise symptom.

Hard work never killed anyone ... but it has been known to cause lupus flares.

It's a bitter pill to swallow ... and here are another dozen of them.

Love conquers all ... but, sadly, it can't cure lupus.

If you have your health, you have everything ... so what have I got?

Two's company, three's a ... lupus support group get together.

You have to count the cost ... to know if you can afford this trip to the pharmacy.

Good judgement never follows ... a bout of brain fog.

Lupies in glass houses ... should wear lots of sunscreen.

To understand lupies, you have to walk a mile ... in their sore joints.

Merry Christmas

lupus.cheezburger.com

Merry Christmas lovely lupies.

Or Happy Hannukah, if that's what you celebrate.

Or have a wonderful day whatever you are or are not celebrating.

I hope you all have a low-pain, low-fatigue day whatever and however you are celebrating.

Let's all try not to over-do things.

Not Going Back

lupus.cheezburger.com

I was walking around the Ipswich Mall today, and discovered a lovely little shop I'd never seen before.

It sold craft items, which looked lovely.

I asked, and was told that yes, they were all locally made.

The shop assistant said local craftspeople left items with them on consignment.

Seeing an opportunity, I asked if they could take my books on consignment.  She wasn't sure and said to come and see the boss during the week.

She asked my name, and was sure she recognised it from somewhere.  I said if she followed the mayor on Facebook, she might have seen him sharing lupus catch-ups I'd organised.

That was a mistake.

She launched into a long story of how she'd cured someone's lupus.  The woman had a terrible rash, and these products a Malaysian nurse had told her about fixed it right up. The shop assistant herself had been taking these treatments and she hadn't seen a doctor for 20 years, even though she used to sometimes get headaches.  I really should think about trying it.

Regular readers know what I think of unsolicited and unqualified medical advice.  (In short, if I didn't ask you and you're not my doctor, I don't want medical advice from you.)

I could have explained the rash isn't the bit of lupus that can kill us.  I could have pointed out that there is no known cure.  I could have done any number of things.

What I did was smile nicely, leave, and decide to never go back there. (Not even if they could sell books for me.)

Wego Health Activist Awards

lupus.cheezburger.com

It's on again.

Time to nominate your favourite on-line health activists for the Wego Health Activist Awards.

Now's the chance lovely lupies: let's try to get recognition for all the amazing lupus advocates out there.  Think of people who have Facebook pages, blogs, Pinterest pages, etc.  Everyone who tries to get information and understanding about our condition out there.

Please nominate now, all your favourite lupus advocates.  And please let me know who you nominated - there might be some great resources out there I haven't caught up with yet.

Nominations are here: https://awards.wegohealth.com/

But...why?

I've often wondered this.

Why do we need a bottle this size ....

...for this volume of pills?

Patchwork Available Now

My new book, an anthology of short stories and poetry is available now, direct from the publisher here: http://www.lulu.com/spotlight/IrisCarden.  Over the next couple of weeks it will appear in all your favourite on-line bookshops as well. (The paperback has one bonus story you won't find in the eBook version.)

Dr Irwin Lim - A Blogging Rheumatologist Worth Following.

I love that there are rheumatologists who blog, and share useful information with people like me who want to stay well informed about our condition. Taking time out of a busy practice to keep us all informed is a pretty awesome thing to do.

One of the rheumatologists who has a blog I find well worth following is Dr Irwin Lim.  You can find his blog here. 

The following article is reposted from his blog (original is here) about his appearance on the cover of a magazine for Australian doctors.

BJC Health in Best Practice magazine.

I feature in an article in Best Practice magazine, produced by BOQ Specialist, a finance company which deals with the health industry. BJC Health funded our recent expansions at our Chatswood and Parramatta clinics with BOQ Specialist's help.

They then kindly profiled our clinic and yours truly.

Given my mission this year is to keep sharing the narrative of our clinic, why we do what we do, and why we aim to keep improving, I thought I'd share with you the article:

'From the start rheumatologist Dr Irwin Lim was in no doubt as to the type of practice he wanted to lead. He didn't have to look far to find others willing to support his vision.

It began with a broad mind and a grand plan. It resulted in a unique arthritis and rheumatology centre that operates across three separate Sydney locations, with over 40 staff and servicing a 50,000-strong client base.

Father-of-three Dr Irwin Lim completed his rheumatology training at Sydney’s Westmead Hospital in early 2004, joining Parramatta’s two-year-old The Bone and Joint Clinic shortly after.  The clinic, which had been started by another rheumatologist and exercise physiologist, involved a group of individuals working towards a team approach in the treatment of musculoskeletal disease.

“My brother, Errol, who is conveniently a top physiotherapist, owned a successful practice in Chatswood called Help St Physiotherapy and Sports Injuries Clinic. Between 2002 and 2008 Errol steadily built up that clinic, introducing remedial massage and gym services, as well as employing additional physiotherapists.

 “It made sense for the two clinics to join.” But the brothers were worried about mixing business and family. However in 2008 the temptation grew too great and the two clinics merged, with Errol joining as director.

Having evolved to incorporate endocrinology, psychology, geriatric medicine and dermatology to its list of services the duo felt a change of name was in order, so the clinics relaunched as BJC Health.

The year 2010 was a big year for the group, commencing an in-house ultrasound service and pathology collection at its Parramatta site. In May the same year, BJC Health opened its third clinic at Brookvale while a third director was invited into the fold—rheumatologist Dr Rob Russo. Another rheumatology colleague, Dr Herman Lau, joined as director in July 2013.

Dr Lim says while expansion has always been on the cards, the group took its time to develop its offering so that everything fit with BJC Health’s vision.

“There is a key theme of patient convenience and communication. We recognised that the way forward in improving the treatment of acute and chronic musculoskeletal injury would involve a coordinated, comprehensive service that no one doctor or allied health professional could reasonably provide. So we’ve set out to recruit practitioners who, under the right working environment, will come together as a team.”

Technological advancements have seen the group welcome arthritis patients from all over the state, drawn to BJC Health’s unique positioning as a world-class arthritis clinic.

Dr Lim says the group has moved beyond standard consulting rooms to better assist its patients. Clients have direct access to the practitioners via email, can call between appointments and can interact with them online.  Client files are kept on remote servers that the doctors can access at any time, and a recent upgrade has seen the group set up a system for online appointment booking.

Its physiotherapy team use an online exercise portal called MedBridge. Clients are able to watch video links or have handouts printed with pictures. All of which has been done, Dr Lim says, to engage, motivate and empower patients.

“For our patients with inflammatory arthritis, our rheumatology care coordinator can email them videos detailing aspects of the condition as well as the medications to be used. There are hyperlinks to access more patient information on our website and blogs.”

“We want to enhance the conversation and empower our clients. While we are proud of what we have achieved, there is so much more we want to do.”'

Five Years of Sometimes, it is Lupus

Sometimes, it is Lupus is five years old today.

Yes, five years ago today, I wrote my first, hesitant, post, not knowing if anyone would read it.

I don't know that I expected it to last this long. I don't even know that I expected to last this long myself.

One of the initial reasons I started blogging was to make money, in five years, I've made less than $200.  So that's not funding a big party to celebrate five years in business.

Another reason was to tell people who didn't know about lupus about this disease.  It turns out that almost all my readers actually have lupus or are personally touched by it in some way (a family member or close friend has it.) So actually I'm not telling anyone anything new.

Looking at its original goals, this blog's been an abject failure.

I keep writing, because I've discovered those goals were second best.



I've gained something much better than money, however.  I've gained a community.  The people who read this blog, who make comments, who speak with me on social media, remind me constantly that I'm not facing this rotten disease alone.  Whatever happens to me has happened to someone else, and will happen to yet another person.  We're all in it together. And for me, that's important, because one thing chronic illness is really good at is making me feel alone.

So dear readers, thank you for the five years of ups and downs that we've shared.  Hopefully, we'll have many more years to share as well.

And if you were thinking of a birthday gift?  Can you spare a fiver?  On the right-hand column of this blog, you'll find a couple of organisations that are busy doing lupus research.  Choose one and send them five dollars in honour of five years of this blog. If each of the  4000+ people on the Sometimes, it is Lupus Facebook page sent five dollars to lupus research that would be .... not nearly enough .... better all send ten.

Happy Mothers Day

Being a mother can be a tough gig.

Being a mother juggling her family's needs

with her own chronic illness

is even tougher.

To all you lovely lupie Mums out there

Happy Mothers Day,

you deserve a medal,

a holiday, and pretty much any

other form of recognition or reward

you can think of.

Unfortunately, all I can give you is 

this photo of some flowers.

I hope you are all having a great day.

What's the worst that could happen?

May is a big month for me.

The fourth is my birthday.  (I was 50 this year.)  The second Sunday of the month is Mothers Day. The tenth is World Lupus Day and the sixteenth is the Sometimes, it is Lupus blogiversary (the anniversary of starting the blog.)

Given that it's such a big month, I have actually been doing some things, other than sleep, eat and write.

I went with my family to Australia Zoo on Monday.  That was fun.  Tiring, but fun. It was a couple of days early for my birthday celebration, but it was when family members could make it.

I've always loved to get out and do things that were different from the everyday grind - but there's always been a limit.  I get scared easily. I'm afraid of heights and any number of other things.



Something happened after I was diagnosed - something that you might not expect.  In some sense, I became less afraid, or at least more willing to do things I was afraid of.

Shortly after I was diagnosed (about ten years ago), I took my kids to Aussie World (you might be able to see a theme in family outings over the years. One of the rides there was of a kind I would never have considered going on before.  It went up in the air and spun around, and all the things I have always been afraid of.

The kids wanted me to go on it with them. I looked at it and thought, "What's the absolute worst that could happen?"  I decided the worst that could happen was that the machine could have a catastrophic malfunction and I could end up dead or disabled.  In short, the absolute worst consequences were what lupus was trying to do anyway. The ride had the potential to at least be fun along the way, quite unlike lupus.  So I went.  I was scared, but I had fun too. Then I went on more rides.  I was frightened to a greater or lesser degree on all of them, but I had fun.

Let's duck back to Monday this week, and the birthday presents my kids gave me.  My son is giving me a bigger phone (so my old eyes can see more clearly and my fat, clumsy, fingers can press the right numbers and letters) but I have to wait for that until next time we go to Brisbane.

My daughter gave me a voucher for ... a hot air balloon ride!  Did I mention I'm afraid of heights?  I'm terrified!  But what's the worst that could happen? It's got to be more fun than lupus, right?

Once May's over, I guess I'll go back to doing nothing much except eating, sleeping and writing.

Defining "Fine"

When a healthy person says "I'm fine", she/he means: "I'm well, there's nothing wrong, I'm quite content, I don't need anything, it's all good."

When a lupie, or someone else with a chronic illness says "I'm fine",  she/he means: "I don't think I'm about to die right at this minute, but I could be proven wrong."

The Cat, the Mat, and the Lupie

A while ago, I told you about how one of our cats ran away and we couldn't catch him for ages, and I was so stressed out I had a flare.

That's not the cat in this story. This is the other one.

Since those fateful events, we've had an "air lock" system in our house.  Both the little entry hall has both the front door and the door to the rest of the house closed - only one can ever be opened at a time so as to make sure no cat can get out.  We have the same system with the laundry and the back door - the door between the laundry and the rest of the house has to be closed before the back door is open.

This has left us with two cats who have begrudgingly accepted becoming "inside cats", but who still look enviously at a dog who is regularly taken outside.

Another piece of background to this story is that on good days, I try to do many of the things that I would leave for my son/carer on bad days.

So it happened that on Wednesday, I was taking my washing out to the clothesline.  It was late in the day and I was a little tired, so a little brain fogged, and I didn't properly close the door to the laundry before I opened the back door to go outside.  Out of nowhere the older cat appeared, and disappeared through the gazebo and into the trees before I had a chance to catch him.  (He may be getting on, but you wouldn't know it.)

I called for my son, who failed to catch the miscreant, but did give me a lecture.  (Whose job is it to make sure I close doors, turn off the stove, etc anyway?)

As I said this cat isn't the one who stayed away for ages.  This one will always come home, the issue is just how much mayhem he will cause and what injuries he will come home with.

I finished hanging out my washing, and came inside.

A little later it was getting dark, and I thought it might be time to check if Mr Bumpy Cat were back home.  I went to the front door, making sure to shut the other door behind me.  I didn't think to turn on the entryway light, I wasn't going to be there long. Just outside the front door was said cat.  He'd apparently been considering coming home.

Trying not to scare him away, I squatted down to try to coax him in.  I had one foot on the doormat and one on the tiled floor.

Mr Bumpy took one or two steps in, but once he was half-way through the door he turned to go back out again.

I grabbed for the cat, not wanting him to run off into the darkness.

The next thing I knew I was lying on the tiled floor in a tangled mess of arms, legs, cat and doormat, with my bad hip and shoulder both making their pained objections quite clear.

There was only one thing I was certain of:  if I let go of the cat before I got that front door closed,  I wouldn't be able to catch him for hours.

I thought of calling for help, but my son was in his room at the back of the house, and if I called too loudly, I would wake my toddler grand-daughter upstairs.

I lay there for a moment, trying to gather my thoughts, and discovered they were as hard to catch as the cat had been.  Eventually, I rolled the entire ball of cat, me and mat fully inside so I could lean on the door to close it.  Done.  I could let go of the cat.

Now, I was in the dark, on the floor and in pain.  I slowly rolled over on to my hands and knees.  Sadly, my left hand was on the corner of the mat, which was now upside down (so the stuff to make it stay in place was on top, not on the tiles), and it shot out from under me.  Have I mentioned that my bad shoulder is the left one?  I almost screamed.

I made it back to my hands and knees, making sure no part of me was on the mat.  I stopped for a moment to recover and make sure nothing was actually broken, before I got completely to my feet.

I opened the door back into the rest of the house.  Just at that moment, the cat darted under my feet, and I fell against the wall. (It was my left shoulder that hit the wall.)  At least I stayed basically upright.

There were no real consequences, other than that my bad hip and shoulder hurt a bit more than usual.  But I can tell you, fatigue, brain fog and basic clumsiness are a very bad combination.

Oh, the washing machine's just finished.  I have to go and hang out another load.

You can read the same story, from the point-of-view of the cat here: http://www.mrbumpycat.com/2016/04/mr-bumpys-version-of-certain-events.html

Movies of our Lives

If there was a movie made of my life, I think the title might be either "Tales of the Unexpected"
(stolen from Roald Dahl) or "Oh No, Not Again" (stolen from a line from Douglas Adams).

It would be about all the times that I just get used to life being a certain way, and lupus suddenly changes everything in an instant.

There would be the "hey I think this flare's over" followed immediately by "I don't think I can get out of bed."

There would be diagnosis, re-diagnosis, un-diagnosis, re-re-diagnosis.

There would be pills started, pills replaced, pills started, pills stopped, pills started ad infinitum.

And in the midst of it all, there would be me, trying to find ways to have a life that seems to me worthwhile despite all the weird things my body and my medications are doing.

I hope it would be a positive story, despite all the setbacks.

I asked some other lupies what the movies of their lives would be called, here's what they said:

• " A life half lived" - Julie
• "The Battle Inside" or "I'm Killin' Me!" - Renee
• "LU?US"  L.ets U.ndo P.eoples U.ndesereved S.uffering.. because  ......L.upus U.nfairly P.unishes U.s S.everely. -Randall
• "Life with the Butterfly" - Patricia
• "Is There Life Out There?" - Jeannine
• "Lupie, Purple Butterfly"  or "Purple Butterfly, Battle Within" - Myra
• "Lupus Living Nightmare" -Maria
• "Rebellion: Attacking Lupus" - Maggie
• "Counting the Spoons!" - Garnet
• "The Invisible Battle" - Melinda
• "Death Becomes Her" - Courtney
• "Duel in the Sunshine!" - Judy
• "Carry On Regardless" - Julie
• "The Rage Inside" - Kimberly
• "I Know I Look Well!" - Christel
• "The Daily Struggle" - Kathleen
• "Here We Go Lupty Lu" - Suzie
• "Pyjama Day Again" - Amy
• "No Pain No Gain" - Anne
• "Girl Interrupted" - Rose
• "Lupie Madness!" - Michele
• "Living Dead" - Angie
• "Fatigue" - Char-less
• "Miserable Me" - Rolinda
• "Mayhem" - Di
• "Oh Loopy" - Sal
• "Lucky Me" - Kim
• "El Transformó Mi Vida" - Monchy
• "Hard Times" - Rena
• "Fearless" - Sheri
• "YES it is Lupus!" - Karen
• "Lupus Warrior" - Lisa

Some of these movies would be epic stories of battling against the odds.  Some would be sad but sweet stories of people putting on a brave face for the people they love.  Some would be dramas about someone juggling all the elements of life, with an extra set of challenges that no-one else suspects. Some might even be madcap comedies about brain fog and practically living in the doctor's surgery.  Every one of them would be different, unique.  Everyone experiences this disease differently, and everyone handles the challenges it presents differently.  Every story is worth telling.

Anti-Arthritis Packaging.

I'm having a little rant about an everyday problem suffered not only by lupies, but by everyone with
weak or sore joints in their hands - anti-arthritis packaging.

You know what I mean.

Even people who don't have weak or sore hands struggle with it.

It's the pill bottle for your sore joints, that you can't get the lid off because of your sore joints.

It's the five thousand cable ties  pulled so tight you can't get a pair of scissors into them to cut them.

It's the completely sealed ultra plastic that you need a knife, scissors, scalpel, chainsaw, lightsabre and atomic bomb to open.

Today, I discovered a new level of hell in packaging.

I ordered a gizmo to help me pull weeds out of the garden.  If it works, I hope to be able to, over time, get the mass of weeds out of my herb and rose gardens. It doesn't require bending or much strength to get the weeds out roots and all.

You might think that the manufacturers of such a product would stop to think that the type of people who might want to buy it could be people who can't bend much and maybe don't have a lot of strength - maybe people with arthritis.

If you were selling this and wanted to be kind to your customers, you might want to consider that in your packaging.

You might.  Or then again, you might make the packaging of a plastic and cardboard combination that you can't cut or tear and then screw it, very securely, to the product itself.

Now I have a product I bought to make me a little more independent, and before I can use it, I have to ask my son to open it for me.

Anatomy of a Lupie

Time for an anatomy lesson.  This is a Lupie's body, and what each part does.

Let's start from the top of the illustration.

Face - for butterfly rash.

Head - for headaches, brain fog, forgetfulness.

Back and neck - for mystery pains.

Joints - for pain.

Gut - for IBS, intolerances, general discomfort.

Skin - for random rashes.

Hands - for dropping things.

Feet - for tripping over on flat surfaces.