Hope for Christmas

We're just days away from Christmas, and I've done about a quarter of what I wanted to do over about a month to prepare for Christmas.

What I would love for Christmas, is a break from lupus symptoms.  I'd love to go from Christmas Eve to Boxing Day without pain, or fatigue, or irritable bowel or reflux, or any of the other random things lupus will do for no real reason.

And I hope and pray for the same for all of the lovely lupies who have read this blog, or followed the Sometimes, it is Lupus on social media over the year. I hope you all get to enjoy Christmas, with your family, friends, or whoever you share with, and that lupus leaves you alone for a while.

Thanks for sharing the year with me.

Merry Christmas lovely lupies,

Hang in there, one day, we'll have a cure!

Love from Iris.

Alas! Poor Memory.

Brain fog has attacked again!

Sometimes, my cognitive dysfunction has no real consequences.  I hallucinate that the doorbell's rung.  I open the door and no-one's there.  It doesn't matter.

Sometimes it's a bit more serious.  Not all that long ago, on a Sunday morning, I found I just didn't have sufficient energy to drive to Brisbane for that Sunday's church service.  I figured that it would be all right, there's no great consequence to missing just one church service, after all.  What I had forgotten (and forgotten so completely that I hadn't done any preparation at all that week), was that I was rostered to lead worship that day.  When the congregation gathers at church, and there's no-one standing up the front, people notice. I'd had several worried texts from people asking if I was all right, and I'd just been saying, "I'm fine, just fatigued," before it finally clicked!  It's the nature of the church that I'm part of that no-one thought to tell me off for letting them down, just to all be concerned about my welfare.

For me, that was devastating. Ministry isn't just "the job I had to retire from", it's who I am. That little bit I can still do in retirement is precious. I felt I didn't just let down a congregation of people I love dearly, but I'd also let down God. I understand that neither God nor the congregation is mad at me for the failure. They understand that with my limits, this stuff will happen. But I'm mad at me, on their behalf.

Sometimes, it's not only serious, it's quite ironic.

For more than two years, I've been on a waiting list to see the Neurology Clinic at Royal Brisbane and Women's Hospital.  I've been desperate for that appointment, hoping against hope that my memory problems, my fuzzy thinking, my hallucinations, can all be cured.

I finally got that precious appointment.  I forgot to go.  Really, I forgot to go to the appointment I was desperate to go to for help for my memory.

I went crying to my GP, who told me to call them and ask for a second chance.  I called. I do get a second chance. Some time in the New Year, I will be given a new appointment.  That's my last chance.  If I don't make that appointment, I will have to go back to the bottom of the waiting list.

When I get the new appointment, all of my family members are going to put my appointment in their diaries, so I'm not the only one to try to remember it. I'll get to it.  I hope. As long as I remember how to get there.

Why Face The Struggle?

Sometimes with lupus, or with any chronic illness for that matter, the struggle of just living daily life gets hard.

We all need to find things in our lives that make facing up to the struggle against our illnesses worth while.

For me, the big thing that makes it all worth while is my family.  When I was first diagnosed, and I read about just how bad lupus could get, I promised myself I would do everything within my power to keep as well as possible until my children reached adulthood.  Of course, once they reached adulthood, I suddenly found myself with a grandchild. Spending time with my granddaughter makes any day worth while, no matter how sick I am, no matter what else is happening. (My adult "children" are still very important to me as well, of course.)

Creative expression is another thing that makes it all worth while.  Even though lupus is affecting my mind lately, I still get to enjoy writing, and baking, and  I'm slowly working on getting my sewing and arts and crafts space useable.

Feeling that I'm doing something of use for someone else is also very important to me.  My biggest fear is of becoming "useless".

Another thing I've discovered recently, is gardening.  I'm not very good at it, and a lot of plants die, but I'm learning as I go.  I'm in the process of getting a rainwater tank, so I can actually have enough water for my garden. (There's issues with that, the tanks are halfway installed and now a neighbour says they're infringing on her land - the boundary is very unclear.)  All of life has its frustrations, even, sometimes, the things that make getting up and facing the day the illness worthwhile.

Everyone who has a chronic illness has times when they just wonder why they bother taking all the medications, getting out of bed, and trying to just get through the day.  And we all have to find those things that are so important we will get up and fight for them.

Let's Dance

Here we go lupie loo,
here we go lupie lie,
here we go lupie loo,
all for the rest of our lives!

You have some rashes here,
you have some rashes there,
you disguise them all with make-up.
and you hide from the sunlight!

Here we go lupie loo,
here we go lupie lie,
here we go lupie loo,
all for the rest of our lives!

You have pain in your hands,
you have pain in your feet,
you have sore joints all over,
and cry your self to sleep.

Here we go lupie loo,
here we go lupie lie,
here we go lupie loo,
all for the rest of our lives!

You take your pills today,
you take your pills tonight,
you take your pills tomorrow and then,
you take more  pills again.

Here we go lupie loo,
here we go lupie lie,
here we go lupie loo,
all for the rest of our lives!

You feel fatigued at home,
you feel fatigued when out,
you feel fatigued when you wake up,
and you could sleep anywhere.

Here we go lupie loo,
here we go lupie lie,
here we go lupie loo,
all for the rest of our lives!

You have a blood test here,
you have a blood test there,
and now they want some wee as well,
there's fluids everywhere!

Here we go lupie loo,
here we go lupie lie,
here we go lupie loo,
all for the rest of our lives!

You forget where you left keys,
you forget to....
you......
what am I doing here?

Side Effects

I went to the doctor today with my shopping list of prescriptions I need renewed.  I found myself thinking that what's wrong my my medications is that I have the ones with the wrong side effects.

I have drugs that come with side-effect warnings like:

• avoid sun exposure while taking this medication
• don't eat grapefruit or take vitamin C supplements while taking this medication
• this medication can increase weight
• this medication will deplete vitamin D in your body, but you can't go out in the sun because you're taking another medication that will interact badly with sunlight, besides which you have lupus and can't go out in sunlight anyway
• this medication will deplete your folate so your body can't absorb iron. Take folate supplements
• this medication will give you nausea
• this medication may cause kidney failure - but you have lupus and that could cause kidney failure anyway, so what are you worried about?
• this medication will raise your blood pressure
• this medication will increase your fatigue, but you've got lupus, you're used to fatigue
• this medication will make you retain so much fluid it gives you headaches, and make your feet too swollen to walk on

The drugs I really want are ones that come with side-effect warnings like this:

• this medication will improve memory, concentration and problem solving
• this medication will make you maintain your perfect healthy weight
• this medication will give you perfect skin and hair and generally make you more attractive
• this medication will help you sleep well at night, but keep you bright and alert at daytime when you actually want to be awake
• this medication will improve your vision, your hearing, and your balance

My big problem is that either the drugs I want haven't been invented yet, or they haven't been approved on the PBS.

Maximum Energy

One thing most lupies have in common (and nothing is exactly the same for all of us) is that we have a very limited amount of energy to use in the day.  We have to budget it carefully, and set priorities as to what we will use our precious little bit of energy on.

My daughter observed the other day, that I always seem to have energy for my granddaughter, more than I have for anything else. It's like she's medicine for me.

It's not that I actually have extra energy, just that I am willing to use whatever energy I have with her.  If she needs me, or if she'd like a story read, or to play, I'm always up for grandma duty. Even if I have no energy for anything else all day, I won't miss the chance to spend time with her.

I asked other lupies on the Sometimes, it is Lupus Facebook page whether they also had something that they always found energy for, no matter what.

It turns out I'm not the only one who would use every last bit of energy on someone they loved.  Grandmas said their grandchildren would always get their energy.  Mums said their children would always get their energy.  Other lupies said their partners. Some said they'd always find energy for their friends, while some reported they no longer had friends because they just couldn't find the energy.

Some, of course, said their jobs or housework, because those things were necessary.

Lots of times, lupies find ourselves with no energy left. We push ourselves just that bit beyond our limits - put some energy on the credit card.  Eventually, it catches up.  But some things are too important to miss, even if they mean we will be sick for a while.

Related post: The Energy Budget

What Does Sick Look Like?

Lots of people will say, "You don't look sick" or "You look well", to lupies.

Most of the time, they're trying to be nice, and I accept it as a compliment of sorts.

I know, however, that many lupies get sick of being expected to either "look sick" or "act well".  There's some sort of belief that only people who look sick really are.

I actually go to a lot of effort with make-up to try to not look sick.  When the make-up's off, people who know me can tell when my lupus is flaring, or when I've done too much.

I get a light pink "butterfly" rash on my face.  It's not really severe, and you'd have to know me to notice it.  Some lupies have strong red rashes, and some even hurt.  Of course there's also some lupies who never get a rash, or any other visible sign of what's going on in their bodies.

Lupus is different for everyone who has it.

You can't judge a book by its cover, or a lupie by her (or his) appearance.

If someone you know has lupus, and they say they can't manage something, they probably can't. Even if they look perfectly healthy, they'll have limitations on how much energy they have and what they can achieve with it.


Related post: Ask An Expert: Concealing Lupus Rashes

Feeling Old

Knowing my limits, and sticking to my limits, have always been challenging for me.

On days when I'm feeling good, I want to just go ahead and do as much as I feel I can - even though, over the following days, that usually proves to be a bad idea.

Worse than that, I am starting to feel like I'm getting really old, as I do less and less that I used to do.

I don't think it's a matter of actual age.  I didn't feel old when my kids became old enough to vote.  I didn't feel old when I became a grandparent.

But now, my son has just assembled my Christmas present for my granddaughter - something I would have managed for myself not all that many years ago.  My daughter has announced she's doing the family Christmas lunch, which I did last year (and every year before since I was, well, my daughter's current age.)

I know that they're actually caring for me.  But suddenly, I feel like I'm very, very old. I also feel guilty when I sit by and watch other people do things I used to happily do.

Every generation has to go through handing the baton on to the next - seeing our children take over the things we used to do.  And I'm proud of them being willing and able to just take over. But I also feel old, useless, and rather guilty, that when they're taking on these tasks, I haven't picked up something else to do. Instead, I'm just lying on the couch and letting everyone else do the work.

That's where I suspect the experience would have been different, had I still been healthy.  I would have found other, still useful, things to do. Instead, I'm on a prolonged holiday while everyone else is working.

What was I going to say?

It's Friday.

It was kind of a surprise to discover that this evening, because I personally have been having a Saturday.  It's not that I chose to have a Saturday on Friday, just that I honestly believed it was Saturday.

I've been having issues with cognitive function for a long time now.

I would tell you how long, but I really don't remember.

I'm on a waiting list for the Neurology Clinic at the Royal Brisbane and Women's Hospital, but I've been on the waiting list for years. The latest letter from them tells me I'm still on the waiting list. There's no indication of how much longer I'll need to wait.

In the meantime, my GP has come up with an idea to deal with some of the symptoms of my cognitive issues, even if we can't do anything about the cause.  She's sent me to a psychologist to help me with memory and the fuzzy thinking/confusion I get sometimes.  She's also sending me to an occupational therapist to look at the clumsiness that seems to go with the confusion.

So far I've had my introductory meeting with the psychologist. It was just for him to gather information about the problem. He's thinking about strategies for me for our next meeting on Monday. Hopefully, he and I will both be having a Monday at the same time.

I haven't seen the occupational therapist yet.  I think I may have forgotten to make the appointment, or maybe I did make the appointment and forget to go.  If anyone knows where I left the information the doctor gave me about the occupational therapist, please call me and tell me.

So, hopefully, between the psychologist and the occupational therapist, I may have some very good strategies for managing my brain fog soon.  I'll let you know how it all goes. If I remember.

Oops

We've had to put one of those non-stick mats in the bath.

You see someone, I won't mention who, slipped over getting into the shower the other night.

I could blame lupus for this - brain fog, poor co-ordination, you know all that stuff goes together.

But that's not the truth.

You see the truth is that there's a scientific anomaly in my  bathroom.  Gravity is significantly stronger just in my bathtub.

The CSIRO would have been in to investigate, but they had their funding cut in the last Federal budget.

So, as we've no anti-gravitational devices to counter the extra strength of gravity in just that spot, we've put in a non-slip mat so as to make it harder to slip over.

In fact, when we brought the mat home, my son put it in the bath tub, and then jumped up and down on it to ensure the suction cups on the bottom were holding it securely in place.

Changing Gear

Fairly soon after I was diagnosed, I upgraded my little manual car to an automatic with power

Driving my little mobility scooter
(with help from my small "co-pilot").

steering.

I loved my little Ford Focus, and took very good care of it.  Buying it brand new, I'd planned to stay with this one car for a very long time.  It was easier to drive than my previous car, the steering was light, I could handle it even on days when all my joints hurt.

I failed to take one thing into account in choosing it.  A Focus is a fairly small car.  That was fine to start with.  Once I needed to start carrying extra things to help me with mobility, the car didn't have quite enough space.  First, it was the wheelchair. Then, to be a bit more independent, I got a groovy little red mobility scooter.  Now, I don't need someone to push me around.

The scooter breaks down into small enough parts to put into the boot of a Focus, but then I needed to have someone with me wherever I went, to get all the pieces out of the car and assemble it, and to break it down and put it back in the car again later. The boot of the car was then full, with no room left to put the groceries, or anything else I might have wanted to carry.

So this week, I did the unthinkable.  I traded in my little car that had less than 60,000km on the odometer, for a very well used Nisan XTrail four wheel drive.

The "new" car - with experience.

It's close to the same age as the Focus was, in years, but has more than 200,000 on the odometer.  So I guess it's a car with experience.  Second-hand was the only way I was going to afford a 4WD.

The benefit is, that my scooter doesn't have to be broken into as many parts - so is easier to set up and put away.

Add to that, my son has promised me an early Christmas present - he has it on order to pick up next week - a folding ramp to make getting the scooter in and out of the vehicle simple and light enough that anyone, hopefully even me, could do it.

Of course, there's also heaps of room in the back for me to get shopping and whatever else I need and carry it home, too.

I was a bit sad about changing cars. You might have guessed.  I was also a bit concerned.  I drove 4WDs when I was younger, but haven't done so for years.  I remember them being heavy to handle, but I was much stronger back then. Fortunately, that has changed dramatically.  This is automatic, has power steering, and in two wheel drive mode, is no harder to handle than the smaller car was.  I also remember 4WDs requiring a great deal of effort to climb into. This one's not all that much higher than a regular car, and I can step into it, rather than climb.

Review: The Lupus Encyclopaedia

Everyone who has lupus should have at least one good basic information book about lupus.

The Lupus Encyclopaedia
by Dr Donald E Thomas, Jr.

The one I bought when I was first diagnosed was read cover to cover, front to back, back to front, topic by topic, until the print was almost worn off the pages. That book's a bit dated now, but I still wouldn't ever throw it out.  It's what told me that what was happening to me had an explanation, that I wasn't the only person in the world to go through this, and there was hope of getting things under control.

Earlier this year, I was sent a review copy of a book that I think is going to fulfill that same role for lots of newly-diagnosed lupies for a number of years to come.  It's a good reference for those of us who've been diagnosed for a while as well. It's The Lupus Encyclopaedia, by Dr Donald E Thomas, Jr.

I've been a bit slow to get around to reviewing it for a number of reasons, not the least of which is that I've been struggling with brain fog, and was afraid it was too complex to handle.

It's a huge book.  If you're brain fogged, like me, you may think it's going to be overwhelming.

Good news.  You don't have to have the concentration to read it cover to cover. You don't have to be an expert on the terminology rheumatologists will use, even though it's written by a rheumatologist.

Once I had the courage to open the cover, I found it was not only nowhere near as intimidating as I thought, but actually incredibly accessible and useable.

The book is helpfully broken into chapters, which you can read as you have a particular need or interest (ie, when a crisis comes, and you want to know what this latest test result means, or what this latest term the doctor is using actually means in the real world.) Each chapter can be read on its own - without needing to have read the chapters that precede it.

It also has an incredibly useable index at the back. (And you know not all books, even the ones that might otherwise be useful, do.)

Dr Thomas does use the medical terminology - but he explains it in everyday language. He manages to do that without "talking down" to his reader, which is a plus. I, for one, struggle enough in brain foggy times without feeling that authors might think I'm dumb.

If a doctor uses a term I don't know, I can make a note of it, and then find it in the index of the book, which will take me to a simple, understandable, explanation.

The information is reliable, and up-to-date.  It relies on current research, and Dr Thomas' own and his colleagues' experiences dealing with real-life lupus patients.

I know I'm going to get a lot of use out of my copy.  I suspect other lupies will get lots of use out of theirs'.


THOMAS, Donald E, Jr. The Lupus Encyclopaedia: A Comprehensive Guide for Patients and Families. Baltimore: Johns Hopkins University Press, 2014.

Wego Health Fourth Annual Health Activist Awards

Wego Health has announced their fourth annual Health Activist Awards.

If you have a favourite health activist - a blogger, a tweeter, a Google plusser, a Facebooker, anyone who informs, or entertains with regard to your health issues, nominate them now.

The categories this year are:

• Advocating for another
• Best in show blog
• Best in show community/forum
• Best in show Facebook
• Best in show Google +
• Best in show Instagram
• Best in show Twitter
• Best in show YouTube
• Best kept secret
• Best team performance
• Health activist hero
• Hilarious health activist
• Lifetime achievement
• Rookie of the year. 

Many of you lovely lupies go to multiple sources for information, support, understanding, finding someone who just "gets it".  Here's your chance to nominate the best of them.  

(If you nominate someone I might not have heard of, please add a link in the comments on this post, so I, and other readers, can find out about them too.)

Oops!

I had my soft drink all over the table, the chair, the floor, and myself.

My son asked what on earth I was trying to do.

"I was just putting the cup down on the table," I said.

So what happened?

Well, I think what happened was that the cup leaped out of my hand, did a quadruple somersault with a fancy twist at the end, and pirouetted to a stop, upright but empty, on the table. In the process, it managed to disgorge its contents, which clearly increased in volume from 300ml to 3 litres while flying through the air in all directions.

Why did this happen? Because I have lupus.

Cups, like many other inanimate objects, have an intense dislike of anyone with lupus.

A non-lupie can put a cup on the table, and the cup will simply sit quietly and compliantly where it was placed. It will feel no need to engage in any feats of acrobatics.

However, when a lupie puts a cup on the table, the cup and the table both conspire to do whatever they can to make the lupie's life miserable.

This terrible behaviour is not limited to cups and tables. No. Almost all inanimate objects have a grudge against people with lupus.

Bottle lids will refuse to come off for us.  (Pill bottles are the absolute worst.  No pill bottle ever opened easily for a lupie.)

Doorways, on seeing a lupie approach, will suddenly move 30cm to the left, or the right, whatever they think is the opposite of what the lupie is expecting.  I have lost track of the number of times I have walked into walls or doorjambs because the doorway has suddenly jumped aside as I was about to go through it.

Even the ground is unstable for us.

The other day I went to put some new herb plants in the garden. I put on my gum boots and gardening gloves.  I should have invested in heavy duty overalls. Some very localised earthquakes (which affected no-one in the world but me) caused me to fall into the garden bed three times.  I was covered in dirt everywhere except my hands and feet. (Those gardening gloves and boots were a good investment.) And I had a whole new set of bumps and bruises.

I can't tell you what it is about lupies that inanimate objects find so objectionable that they must attack us at all times. I wish I knew, because then perhaps there would be a way to find grounds for a truce. What I can tell you is there are a lot of inanimate objects in the world - which makes the world a very dangerous place for people like me.

Wheelchairs Don't Bounce

My "new" chair.

Well, I did only go overseas for two weeks. It's a while since I got back.

I needed a bit of recovery time, and then there were some family and health crises (not all the health crises were mine for once.)

So, as an intrepid lupie world traveler, I've had quite an adventure, and I don't know where to begin telling you the stories of what happened.

I guess I'll start with the discovery that wheelchairs don't bounce.

You wonder why I tried to find that out?  Well, actually it wasn't me who did the experiment. But I did provide a brand new wheelchair for it.

I'd bought a wheelchair with the trip in mind. The theory was that if I was pushed around in a chair instead of walking (limping) I would have the energy to do more. This actually worked out quite well, despite the hiccup.

My family pushed me through Brisbane International Airport in my own chair.  At the door of the plane, my chair was taken away.  In the stop-over airports I was transported by airport staff in the airport's own wheelchairs to my connecting flights. (This, in itself, is a great reason to take a wheelchair on a flight. It meant my family had a guide to show us where we were going getting from one gate to another.)

At Manchester, the final stop, the airport wheelchair was awful. The airport staff didn't push this one, but gave it to my son to take me, saying that it would be a while before someone was available and we'd be faster on our own.  The wheels of the chair seemed to have come from the same factory that produces those shopping trolley wheels that go in four different directions at the same time.

My son struggled and I got frustrated, and we were both incredibly glad to pick up my chair from the baggage collection point.

My chair was so good in comparison to the airport one that we didn't even notice that it wasn't behaving as well as normal.

We passed a sign that said, "Check your luggage, no complaints accepted after this point." We'd been travelling for 24 hours straight. We had all our bags. Nothing was obviously wrong. We left the airport.

The next day, the family went for a walk through the streets of Frodsham to the local park.

Family members took turns pushing my chair, and complaining about the rough footpaths, especially the sections that were cobblestones. (Cobblestones may be very pretty, but they're not good for wheelchairs.)

It got worse a it went on, and then we discovered that one of the front wheels wasn't straight. It was bent under part way.  We were all muttering about just how horrible British footpaths were.

Eventually the front wheel collapsed all the way, and I had to walk back to my sister's house.

My sister asked around and found that a place called Motability would be able to fix my chair. We went in to the place suggested, and handed my wheelchair over to be examined.

While waiting we watched a video about the business - which employed people with disabilities to restore and repair mobility equipment for other people with disabilities.

The diagnosis for the chair: it wasn't damaged by the street. It had received a hard knock, probably from being dropped from a height.  The repair people strongly suggested airline baggage handlers had something to do with it. The frame was so badly damaged, it couldn't be repaired.

I bought a red reconditioned chair from them for 50 pounds, which meant we were free to continue the holiday.

And having a chair for trips to all the amazing places we went really was worth it.

So, dear lupies, if you're planning an overseas holiday, taking a wheelchair is a great idea. Just don't buy an expensive new chair to take with you. Get the cheapest one you can buy, second-hand is fine.

What Do I Need To Take?

The day after tomorrow, I leave for my trip to England to visit my sister.

I've done a fair bit of preparation ahead of time. One of the big things was going over to having my medications pre-packed by the pharmacy.

I also had my doctor write a letter for me to explain all of my drugs.  She's also given me sleeping pills, so that I will definitely sleep enough on the plane, and get sufficient rest while overseas so that I shouldn't get sick from being tired.

I've been back and forward to the shops over and over again.  I've got all my medication together with my letter from the doctor in a snap-lock plastic bag.  I've got all the liquid products I need to carry in bottles of less than 100ml, and all together in another snap-lock plastic bag.

I've weighed and measured my suitcase and carry-on bag.  I've been to the bank to get some English pounds. I've checked with my phone company about "global roaming", and decided just to buy a English sim card at the airport. (So, friends and family, my usual phone number won't work... but my email and Facebook and stuff should all be OK.)

Everything I can think of that needs to be done, I've done.

But as I'm packing, I'm struggling to make the final decisions: do I need to take my laptop, or can I live without it? I decided I would take it. Then I decided I didn't need it. Now I'm trying to remember why I'd earlier decided I would take it, just in case that was important.

Do I need my wheelchair?  I can get around without it. But everyone else has to slow down or wait for me. Is it more convenient if I take the chair and someone can push me, so I keep up with everyone else? Is it more convenient for them all to wait for me to hobble along, and not have to push me? With someone pushing me I can last longer at doing things before I need a rest. Will that make a difference for doing "touristy" things? As with the laptop, I've decided I need it and then decided I don't need it, then wondered if I do need it.

Should I take my tens machine? At least I'll take it out of the big case, and put it in my hand luggage.

At 9.15am on Thursday, the airport transport comes to pick us all up. Whatever the most recent decision is at that time is what I guess I'm doing.

Apology, if needed

This message (sender's name deleted) was sent to the Sometimes, it is Lupus Facebook account....

I can't believe you people call yourself christian and you denying other religion into your group telling them they make you sick the fact that they practice another religion ill like to know what kind of bible you own I tought this was a free religion country telling people tey make you sick because they pagan a real christian would try to convert you are out. Of respect sickness has nothing to do with religion, or gender, or color I hope you get hit so God doesn't preach that you are fully ignoran and stupid and you certainly not preaching the bible you are holy mother...

Now, while I don't make a secret of my personal faith, I certainly don't intend to disrespect anyone of any other faith.

The only thing I tend to censor as it comes into the Sometimes, it is Lupus social media pages or in comments on the blog, is when people give "advice" that suggests lupies should abandon their medical treatment (especially without consulting their doctors.)

While I was in hospital chaplaincy, I worked as part of a multifaith chaplaincy department, and I would hate to think I have disrespected anyone's strongly held faith.

If I have done so, I apologize unreservedly.

Disability Support and Lupus

Right at the moment, there's a lot of discussion going on over the review of the Welfare system here in Australia.

There's a 176 page report available. (You can see a copy of it on the ABC news story about it.) There was a time I would have been able to read it, translate and summarize it for you.  That was before lupus brain fog.  Now, I'm settling for reading and watching news and making as much sense as I can of what journalists have already read and interpreted. (In research, that's called using secondary sources instead of primary sources, which is of limited value, but let's make do for now.)

One of the things being talked about is the Disability Support Pension.  According to news reports, the report is recommending simplifying all Centrelink Payments (which I'm sure nobody would argue with.) But it's also recommending moving a number of people off the DSP if they are determined to be not permanently disabled.  People would be on other benefits the same as job seekers, and would be expected to be looking for work.

For the most part, there seems to be some awareness of the reality of disability, but what shocked me, was seeing a copy of the Courier Mail in a shop, and seeing this headline glaring from the front page:

Disabling rorters: Planned Disability Pension Scheme overhaul could force thousands of Australians into workforce

You can read the Courier Mail's whole story (on-line version) here.

I guess you can tell what I'm objecting to here.  There's some kind of assumption that people on welfare are all part of a scam. We're taking advantage of the workers.  Even the Federal Treasurer Joe Hockey, when talking about the need for welfare reform said that Australian workers were working one month of every year to support welfare recipients.

Was that designed to make everyone with a job resent those of us who can't work?  My guess is yes, it was.

So what's the reality here?

I've worked part-time for a while since I began receiving the DSP. (And of course, the DSP was reduced accordingly for that period of time.)  Then my cognitive dysfunction (brain fog) became worse, and it reached a point where I just couldn't work.

I can write, because I do it at times when my mind is working. Having an actual job would require me to have a functioning brain at set times.... something I can't guarantee.  I can't even guarantee a functioning body at a set time.

In a sense, I am doing very well. I did get approved for the DSP.

  I know of other lupies who have been refused DSP, even though their doctors have told them they can't work. They're left in limbo.  As far as their doctors are concerned, they're too disabled to work. As far as Centrelink is concerned, they haven't proved themselves disabled enough to stop work.  Some of them are going without their medication because they just can't afford it. Going without medication will mean they get sicker. Eventually that will lead to extra costs in the healthcare system - which will prove to be a false economy for the government.

I won't write a response to the report and send it in to my local member of parliament.  My brain just won't do anything that difficult any more. But I hope people who are healthier than I am will.


Further information.
ABC News: Blueprint for overhaul of welfare system recommends simplifying payments, extending income management.
Courier Mail: Disabling rorters: planned Disability Pension scheme overhaul could force thousands of Australians into the workforce.
Sydney Morning Herald: Thousands to lose Disability Support Pension under changes flagged by government.

Supermarket

I went to the supermarket on my own today.

That's right, I went out in public, totally unsupervised.  There's no way that could end badly, is there?

I was fine until I started to get tired and sore.

That happened a little faster than usual, because I was pushing the trolley.

Once everything was in the trolley, I was more than relieved to line up at the checkout. I waited patiently for my turn.

When I was finally at the head of the line, the checkout operator looked at my trolley and just said: "That's more than 15."  I hadn't realised I was in the express lane.

I went on to another long line and had to wait again.  Since my hips, knees and ankles were already hurting, standing in line was quite painful.

At last I made it to the carpark.  When I got home, I found my son had arrived before me so was able to take the shopping inside.

All I had to get from the car was my handbag and .... no walking stick.

I can remember having it as I pushed the trolley to the car. After that?  I have no idea whatsoever.

I rang the shopping centre, and it hasn't been found and handed in.

It looks like a need to go shopping for another stick now. I'll wait until someone's free to go with me.

Handing Over Responsibility

I've done it.

My first medication pre-pack.

I've thought about it for years, and at last, with great trepidation, I've done it.  I've handed over responsibility for my weekly pill sorting task to the local pharmacy.

It was getting to the point of being half way through sorting and saying "did I put in....?"  "have I remembered....?"

So the time had come.

It's $2 a week on top of the regular cost of my medications, so that adds up to about $50 a month, and my fish oil doesn't fit into the pack.  But mostly, it's all done for me.

I picked up my first month's packs today.  Actually my first two months' packs, because I'll be going overseas soon and needed to have some to cover that time as well.

The details of all the medications is listed on the back.  Which is good, because it allows me to still be obsessive. I can obsessively check that they haven't made a mistake, instead of me making a mistake. (I just checked the back, and it says I have one methotrexate tablet on Sunday night.  Actually I'm meant to have two and a half.... so I guess I'm ringing them in the morning to sort it out.)

The days of the week are set out so that tomorrow is the bottom strip of pills. I can take the single strip off and carry it in my handbag if I'm going out.  The next day is the next strip from the bottom, and so on, up the pack, making it easy to separate out the strip of pills for whatever day I am going out.

It may take a little getting used to.  But I'm no longer spending half a day each week sorting out my pills. Maybe once the first bugs are worked out of the system and I'm used to just picking up my pills, ready sorted, each month, I'll even feel comfortable about handing over the responsibility.

 

"Expert" Advice

Sometimes I wonder if I am some kind of a freak.

You see, I go to actual doctors to deal with my health issues, rather than Google or television talk shows. And I do what my doctors say to do.

I'm starting to think that makes me a freak, because, there are so many experts around now, who know everything about my condition. They know that if I ate a healthier diet, had a positive attitude, or ate the latest superfood featured on some tv talk show, I wouldn't be sick.  I don't need those dangerous drugs I take.

Really, the drugs I take are dangerous.  That's one of the reasons I regularly see doctors so they can make sure the drugs are doing more good than harm.

That's me. I'm a freak.  If I trusted the internet, I could be like all the experts who give me advice.

People don't even need to know what's wrong with me to be an expert on my condition. For example, the latest random person to see my profile on a social media site and fall in love with me (yeah, that happens) asked me what I do for work. I explained I don't work as such any more. I'm on a disability pension, but I blog and write indie books as something to do with my time. He told me he was sorry about what had happened to me but I needed to get over it and move on.  That was great advice, from someone who didn't know what had happened to me or whether or not it was still happening. Then he asked me what I was looking for in a relationship. I explained in no uncertain terms that I'm actually happy with my life and not looking for a relationship. (And if I were, it certainly wouldn't be with someone who would tell me how to live my life without knowing anything about it.)

I've also been told that people with autoimmune diseases cause them ourselves. If I stopped making myself sick, I wouldn't need all my drugs.

Then there's the diet thing.  Every week there's a new "superfood" which is another name for an ordinary food with a lot of marketing money behind it. If it's not a single superfood, it's a whole diet, or an exercise program.

There's also the "big pharma doesn't make cures, it makes patients" thing.  Usually the people who promote this one, then go on to promote "natural" therapies - made by the big "natural" pharma companies. Like big pharmaceutical companies, the big "natural" pharmaceutical companies are actually in it for the money - the only difference is they don't have the strict regulations about things like proving their products do something.

After all of the advice I get so often, I have to admit, I am recalcitrant.  I choose to continue to be a freak.  I keep going to actual doctors, and I keep following their advice. So I keep taking dangerous medications.

Long Distance Relationships

Do long distance relationships work, I wonder?

Just how much does one give up to maintain a relationship over a distance?

Sure, I can plan appointments, time to see them, and manage the travel, if I plan carefully.  But what happens if there's a crisis, when I really need them, and they're just not there?

Maybe, when I move, I should make a clean break; start over with someone else. But, we've been together for years, and we've got so much history.

Besides that, she's a really good doctor.

Oh, you thought I was talking about a romantic relationship?

No. I'm talking about my GP.

When I move to Ipswich, do I stay with my GP, and travel back by car or public transport every month (or fortnight when lupus is flaring) for my check up? Or do I change over to someone local?

I've been given a recommendation for a doctor in Ipswich who's supposed to be good with complicated conditions by lupus - but I've never met them, and I don't know how we'll get on.

I've been with my current GP since before I was diagnosed. She's been with me through coughs and colds, my hysterectomy, lupus diagnosis, chest and sinus infections, ups and downs and everything in between.

I know I'll probably have to change doctors. When I am flaring, the travel will be far too much. But breaking up with my GP is hard to do.

A Moving Experience

I'm packing to move house. Again.

Hopefully, this will be the last time.

You may remember that a short while ago, I asked lupies what they would do if they had one great big bucket of money to do something for their health.

My own answer was that I'd buy a house, which had a granny flat for me and would be able to house the rest of my family, or a carer's family. The idea was that I could continue to be as independent as possible, but there would be help close at hand if I ever needed it.

Since doing that post, I've been working on how I could make it a reality. You see, my family was keen to have the same thing: a home that really was ours, where we could all have our own space, but be there for each other if needed.

After lots of searching, a very disappointing call to the Qld Housing Department's home loans section, and a lot of daydreaming and scheming, we came up with something.

My superannuation has been paying me a pension - but I've always had the option to commute a part of that pension to cash - to get a lump sum of money in return for a reduction in income. That's what I've done.  I've taken a reduction in my superannuation income, so as to be able to have a home.

The house we've found is perfect.  It has two storeys.  My daughter and her husband and their daughter will have a three-bedroom house upstairs. My son and I will have a two-bedroom house downstairs.  The part I will live in is flat.  If I find I am going up and down the stairs a lot, we can look at installing a stair lift (because it's our house, not a rented house, and we can do what we want with it.) Downstairs also has a large rumpus room that can be an arts and crafts studio and office space, something I've always wanted.

It's a big risk. But most of the big things we do in life involve big risks.

One risk is that I will have a bout of brain fog and sign something I regret, or order three different electricity suppliers or none, or do something that makes the whole contract fall through.  This is where my family's invaluable.  I'm not doing anything on my own.  All the phone calls I have to make, someone else is with me, keeping track of things I might forget, finding easier ways to do things. We're sharing the work, and helping to keep each other organised.  All of the paperwork, someone else reads as well as me. Everything that happens that I have to remember, I tell everyone in the family. Everyone else's brains are working to cover for any brain fog I have. Even going to the shops for bits and pieces for packing, I have someone with me who can tell me if I'm getting vague and declare a rest break. Whenever a problem comes up, we talk it out until someone works out a solution.

Another really big risk is that I will end up with a major lupus flare from the work involved in moving. We started packing early, as soon as I signed the contract.  Packing very slowly means I'm not under as much physical pressure. I'm breaking the big job down into very small jobs.  I want to do my fair share of the packing, but I know if time gets tight, the family will be there to help. At the other end, unpacking can take as long as it takes. If I only unpack a box a day, I'll still get through them eventually.

Of course, sometime very soon after we move in, we'll need another trip to Ikea, and you know the risks involved there.  That always takes me at least a week to recover, with the risk of a flare no matter how careful I am.

One risk I really can't control is that the distance we're moving (we had to go a long way to find somewhere affordable) means that it will make sense for me to get a new GP.  Having been with the same doctor since before I was diagnosed - this is probably the scariest part of the transition.  There's a risk I won't find a doctor anywhere near as good as the one I have now.  I'll get to my specialist with public transport, but travelling an hour or more each way for my regular visit to my GP seems a bit extreme, when there will be several other doctors within a couple of minutes' drive of my new home. I've already had recommendations for someone who's supposed to be good. But changing doctor feels like a much bigger step than buying a house. I haven't yet worked out how I'm going to handle that transition.

Lupus Bites!

Today, the 10th of May, is World Lupus Day.

This year, I've been asking lupies to complete the sentence:  

Lupus bites because...

• it shows no mercy and does not care who it destroys. (Elli)
• the symptoms (major or minor) can hit with no warning. they can affect every waking moment and everything you do in some way or other. (Sal)
• it interferes with my active family lifestyle. (Elizabeth)
• there is no cure for this invisible stranger. (Roz)
• it tears me in two... I am no longer who I was. My body and mind don't match my identity. I have a life half lived and dreams pass me by. I seek a way to find myself amidst confusion and pain. I look for a way forward and try not to loose hope... yes lupus bites, an unseen enemy with fangs bared. I fight on and pray for a cure. (Tammy)
• its insidious, invisible nature destroys the body long before you know you've been bitten. (Roz)
• no one knows how to kill the invisible beast. (Roz)
• it's painful, tiresome, not understood by others, and makes day to day hard to get through sometimes. (Donna)
• it zaps your energy. (Lisa)
•  Lupus bites off more than it can chew! Invisible to the naked eye, it destroys each and every part of our bodies, bite by bite and no one can stop it. (Dianne)
• it makes me feel like I have lost a huge portion of my identity. I am not who I used to be and truly miss being able bodied and energetic! I will always be strong, but won't always have the energy to back it up! (Stephanie)
• I'm sick of being sick. (Janine)
• it makes you feel older than you are. (Cassy)
• my disease is not a joke from a TV show. (Eryn)
• you create new Olympic sports called body tossing to make it 5 feet to the bathroom. (Bree)
• I don't look sick but I AM sick. (Nicky)
• its hard to enjoy summer not being in the sun. (Julie)
• it steals your life. (Claire)
• we have to take so many different medications to treat our chronic illness. (Cheryl)
• it's aptly named the wolf because it sneaks up & attacks the mind, body, & soul. It tears a person to shreds until there is nothing left. The more pain it inflicts - the better it seems to enjoy it.When you think it's finished with you - it returns to inflict more pain and suffering. Lupus bites???- It sure does..... (Cheryl)
• it nearly killed me. (Scott)
• I wanted to be a doctor but who wants a doctor that can't be around infectious people? (Kate)
• it's extremely unpredictable! (Teresa)
•  it is hard to diagnose and it took 3 years of pain, belittling, and exhaustion for someone to finally hear me. (Hollie)
• I'm sick, but I don't look sick; I felt 70 when I was 17; none of my family or friends can really understand what I go through. (Joyce)
•  it robs  me of what tomorrow might be. Everyday before I open my eyes I take inventory of my body. What moves, hurts and what doesn't. (Mary)
• I like going outside, I like having fun,
• but the rays are bad from certain lights and the Sun,
• it hurts so bad when there's so much to do,
• it doesn't always growl to warn, that it's about to hurt you.
• Lupus bites.
I'm too young to feel this old! (Patricia)
• it has taken friends away from me, and taken their lives away from them. (Beth)
• there's only so many times you can cancel at the last minute before people stop asking you to do things. (Iris)
• it causes pain! Lupus bites all my joints. (Cheryl)
• everyone doesn't believe the horrible pain I go through.Lupus bites when lupus wants to cause pain. (Valerie)
• sometimes you forget you have it and pay the price later when you can't get out of bed or worse have to be hospitalized. (name not given)
• I leave in my car to run errands, and get a mile down the road and forget where I had plans to go. So then I go through the coffee stand and treat myself. (name not given)
• I have a great boyfriend but I'm married to my many pills and insurance. (name not given)

This one didn't fit the dot points (because it's a poem)
Lupus bites because
  I like going outside, I like having fun,
  but the rays are bad from certain lights and the Sun,
  it hurts so bad when there's so much to do,
  it doesn't always growl to warn, that it's about to hurt you.
  Lupus bites.
  (Mike)

And finally, my response.... Lupus bites because it does't just affect me.  It also affects everyone who cares about me. It means I am unreliable. I let people down, and I hate that.

Keeping with the theme of today's post, I've added a new design (well, a variation on an older design) to the Shirt Shop.

Making Lupus a not so "invisible" illness

Press release from the Autoimmune Resource and Research Centre.


World Lupus Day is May 10th. The day focuses on; the need for public awareness and understanding, the need for increased research into causes and cures, and the need to improve services, treatments and
diagnosis times within the medical profession. World Lupus Day provides a forum for lupus organisations around the world to share new information about this condition and its treatment and to call for lupus to be recognised as a significant public health issue.

Lupus is a chronic autoimmune disease that causes the immune system to become overactive, causing an individual body to attack healthy tissue. Lupus is a complex autoimmune illness that ranges from mild to severe. Autoimmune illness is the 3rd major health issue behind cardiac illness and cancer. As 1 in 20 people live with autoimmunity, it seems that no-one is immune.

In 2014, World Lupus Day will mark its 10th  year. The Autoimmune Resource & Research Centre, situated at John Hunter Hospital in Newcastle NSW with the help of NIB foundation have developed a series of brochures to help raise awareness and provide information to people living with Lupus and other autoimmune illness and those that care for them. Brochures are available on www.autoimmune.org.au.

Please join the international lupus community in urging your government to adopt and issue the World
Lupus Day Proclamation:-
Whereas, lupus is an autoimmune disease that can cause severe damage to the tissue and organs in the body and, in some cases, death; and 
Whereas, more than five million people worldwide suffer the devastating effects of this disease and each year over a hundred thousand young women, men and children are newly diagnosed with lupus, the great majority of whom are women of childbearing age; and 
Whereas, medical research efforts into lupus and the discovery of safer, more effective treatments for lupus patients are under-funded in comparison with diseases of comparable magnitude and severity; and 
Whereas, many physicians worldwide are unaware of symptoms and health effects of lupus, causing people with lupus to suffer for many years before they obtain a correct diagnosis and medical treatment; and 
Whereas, there is a deep, unmet need worldwide to educate and support individuals and families affected by lupus; and 
Whereas, there is an urgent need to increase awareness in communities worldwide of the debilitating impact of lupus; 
 Now, Therefore, Be It Resolved that 10 May 2022 is hereby designated as World Lupus Day on which lupus organizations around the globe call for increases in public and private sector funding for medical research on lupus, targeted education programs for health professionals, patients and the public, and worldwide recognition of lupus as a significant public health issue. 

The Autoimmune Resource and Research Centre is a not for Profit charity that is dedicated to providing education and support for individuals living with a variety of systemic autoimmune illnesses. We are
holding our inaugural Trivia Night on World Lupus Day 2014, for more information and to donate to help the centre continue its work please go to www.autoimmune.org.au.

What If?

I asked lupies on social media a while ago what they would get, if they had one huge bucket of money
to spend on just one thing for their health.

There were some interesting answers.

One person was so glad of finally having a diagnosis and treatment that she felt she didn't need anything more.

Others wanted to improve their ability to exercise, one suggesting a heated therapy pool, another a personal trainer with special qualifications in dealing with conditions like lupus.

 Someone else suggested that if they had money for something big, it would be for a huge Australia-wide lupus awareness campaign.

As for me?  Well, since my daughter and her family have moved into the next flat, I've come to realize just how much I depend on them. I don't need to be looked after all the time, but sometimes I do need help with all kinds of odd little things - from zips I can't do up, to things I can't reach or lift, and on really bad days the shoes I can't reach to put on.

But as her baby grows up, her flat is getting smaller, and they won't be able to live there for ever.  So if I had the money, I would buy us a suitable home.  Ideally, it would be a house with a granny flat, or be a duplex with room for my daughter and her family in one home, and for my son and I in an adjoining home. Maybe even when my son is eventually married, there could be some way to expand to have three homes which were close or linked. The idea would be to give everyone independence, but also to always have family close at hand when needed.

That's probably a crazy daydream, but it would mean I could be as independent as possible, for as long as possible.

Wake Up and Smell the Coffee

I heard a story on the television news last night about research into people who drink coffee.

Apparently if you regularly drink three to four cups of coffee a day, your risk of getting diabetes is reduced.

The theory was that people who drank coffee did so as an energy boost, so they were more active and being active was what reduced their risk of diabetes.

I didn't catch who did the study, how it was done, or how many subjects there were, so I can't tell you how reliable or otherwise the research was.

I do drink three to four cups of coffee per day, but I'm not sure I get the same health benefits from it.

You see, I drink two cups of coffee at breakfast time to get the energy to eat breakfast, take my pills, and think straight to do a little bit on the computer.  If I'm lucky, I'll still have enough energy to put a load of dishes in the dishwasher.

That's about as far as two cups of coffee takes me, before I need a nap.

Lupus fatigue is more powerful than a simple stimulant like coffee... so even when I get myself thoroughly caffeinated, there's a limit to what I can achieve before fatigue takes over again.

In my house, running out of coffee is a disaster. It means nothing gets done, not even thinking, as fatigue makes my brain fog far worse.

Well, my coffee cup's empty again, so I'm off to lie down. See you later.

World Lupus Day Project

Want to help with the Sometimes, it is Lupus project for World Lupus Day 2014?

I want your first name and your completed sentence "Lupus bites because....."

Either email me your response, comment on this post, or send it to me via social media.

Your sentence can be funny, silly, serious, angry, just be yourself (but keep the language appropriate for publication.)

I'll need responses by the 9th of May, because the post will go live on 10th of May (World Lupus Day.)

I Don't Need Help. Really.

I have friends living upstairs. I have a son living with me. I have a daughter and son-in-law living next door. I am much better off than many lupies.

If I need help with anything at all, I just need to ask.

But usually I don't ask.

Oh, I ask my son to empty the dishwasher or take out the rubbish, but he lives with me. He helps dirty the dishes and create the rubbish. So it's OK to ask him to do those things.

I don't want to be the needy person who's always wanting something from someone.  So even though family and friends have actually offered to do my vacuuming and things, I usually put them off.  I'm going to do it.  OK, maybe not this week, but I'll get to it eventually. And if the vacuuming is done once every two or three months, it's still done. If the stack of dishes in the kitchen reaches to the ceiling, I'll catch up one day.

I refuse help, I think, because if I accept the help, maybe I'll realize it's not an occasional thing, maybe I actually couldn't cope on my own.  Maybe I can't be independent any more. And that would just be too much for me to accept.

Of course, when it's something really important, I can ask for help, and I can accept it.

I did ask my daughter for help recently.  One of the lovely ladies from my church died, and I had a funeral to do.  Ever since the day brain fog messed with my head so much while I was preaching that all my notes seemed to be gobbledygook, I've been afraid to lead worship again in case the same thing happened.  I couldn't refuse this lovely lady's funeral, however.  So I recruited my daughter to help.  I wrote the service, and had  my daughter read through it.  The idea was that as long as she could assure me that what I wrote did indeed make sense as written, all I had to do on the day was read it.  Whether it made sense to me or not when I read it wouldn't matter - because I had it independently verified that it did make sense.  It worked. Actually, I got through the whole service without messing up, although I was exhausted at the end of it.

When my handbag disappeared (presumed stolen because everyone has searched everywhere) I accepted help.  I just searched, and stood by bemused while other people searched, checking places like the microwave and clothes dryer in case brain fog had led me to believe one of those places was the right place to leave my handbag.  When my son said we were making a list of cards to cancel and change, keys to copy etc,  I humbly and quietly accepted the help that's offered.

So I really am capable of asking for, and accepting, help.  I'd just rather not do it.  I'd rather be independent. I'd rather rely on myself... even if the self I'm relying on isn't very reliable. How's that working out for me? Well, some days it's OK.

Gastroenteritis

Things I hate about gastroenteritis:

• If anyone I know has it, no matter how careful I am with hygiene, I will get it. It doesn't matter if I've actually been with the person who has it, or just talked to them on the phone or by text, I will still contract it. My immune system is so mixed up it actively seeks out bugs that are outside my body, runs out to greet them and invites them in for a party. The immunosuppressant drugs I have to take are great for bug parties.
• It always hits in the middle of the night, so I wake up in the dark, and disoriented. At that point, my joints announce, "we decide if you can stand up and the conditions under which you will do so." The negotiations are short-circuited and I have to run, just hoping knees. hips and ankles won't give out completely, no matter how much they are object. 
• Sitting in the bathroom for long enough, and in the right position to become convinced that my legs have become possessed by the ghost of John Howard's eyebrows, and knowing that I don't have the physical or mental ability to use a razor at this stage, and probably not for the next 24 hours or more. (For those overseas, John Howard is a former Prime Minister whose eyebrows have a life of their own, and are more overgrown than any old growth forest.)
• The need to learn skills like sitting on the loo and putting my head in the shower simultaneously. (Where my bucket went is anyone's guess. I'm sure it will turn up tomorrow, or maybe next week, or just after I buy a new one.)
• I threw out a perfectly good shower mat rather than washing it. My bathroom smells like bleach, because I didn't have the energy to clean properly, so I just threw bleach everywhere to kill the germs.
• Instead of using all the food I've eaten for the past six months, my body's been keeping it in storage somewhere (probably my thighs) for just this occasion.
• Despite the ballistic expulsion of about 12,000 kilograms from my gut, I haven't lost any weight.

Well, that was my night.  If anyone needs me this morning, I'll be back in bed... or the bathroom.

Update

For those wondering about my liver function results from the previous post, I've been to the GP, and the second blood test was better than the first, but still not quite right, so I have to go do it all again.

I'm Still Here

I haven't been online much lately, so I haven't posted much.

What's been going on?

Well, as you would have seen from my previous post, trialing going without sulfasalazine effectively caused a flare. And it's taken a while back on the drug to start feeling even slightly better.

On top of that, I think I've had a cold.  It's hard to tell. I've been hot and cold, sweating and complaining about the heat when the air conditioner was on maximum and my son said it was too cold. I've been tired and sore.  All of those symptoms could just be my little lupus flare.  But my usual rhinitis has been worse, and that's what makes me think I may have had (possibly still have) a cold.

Worth the effort -
Johanna discovers Grandma's slippers.

So, for a while, I've been alternating sleeping on the couch with lying on the couch watching tacky detective shows on TV, and the occasional bit of babysitting, just to remind myself there is something in my life that is definitely worth the effort of waking up in the morning.

I have had one other little adventure (or, more accurately, shock.)

I went for my regular three-monthly blood test.

When I was in school, and even in my tertiary studies, I always had a phobia about tests.  I'd know my subject inside out, and I'd do brilliantly on assignments, in practical work or oral presentations, but tests would freak me out. Often, my mind would be full of information before I went into the exam room, and seem to be completely empty as soon as I looked at the question paper.

Some of that anxiety has carried through to other kinds of tests, such as blood tests.  I know I can't study for the blood test, and it's not really a matter of passing or failing, but a lot can count on a blood test.

Over the years I've become used to going, having the blood taken, and hearing in a subsequent regular visit to the doctor that my blood tests were fine, or that I needed a bit more vitamin D, or some other minor, easily-fixed matter. There was never anything that couldn't, or shouldn't, wait for the next visit to the doctor.

That's why I was taken by surprise the morning after blood test when I had a phone call from Dr K (my rheumatologist).  Now, let me make clear just how unnatural this situation is.  In the seven years I have been regularly seeing Dr K, he has never spoken to me on the phone. Once or twice he may have had a receptionist call me with a message, but he's never picked up the telephone, dialed my number, and spoken to me personally.

I must have sounded confused, because after he said his name, he went on to explain who he was. (Or maybe he just doesn't trust my cognitive ability to make that link any more.)

He had called because he wasn't happy with my blood test. Specifically he had some concerns about my liver function test results.

My mind raced.  I'd always been afraid of failing a test. What would happen next? Would there be a make-up test so I could try to do better? Was it just an absolute failure and there'd be some horrible consequence? Was my medication affecting my liver? Was lupus affecting my liver?

As it turns out, there was a make-up test. He told me to go back and do it in a week's time.

I did.  That was days ago. He hasn't called again.  I hope that means I passed.

Finding Out The Hard Way

Overnight, my ankles swelled so much that
the elastic supports that I use to help ease
the pain, were slicing into me.

About a month ago Dr K, my rheumatologist, asked me to stop taking sulfasalazine for a month to see if it was still working.

Well, I definitely found out.

I've found myself in a flare.

To start with my usual aches and pains became more pronounced than usual.

My ankles have been hurting so much that the only way I could keep the pain under control enough to sleep was to put elastic joint supports on them.... but then my feet and ankles have swelled so much that in one night supports that were comfortable (and comforting) at bedtime, were cutting in to me the next morning. Actually, truth be told, by morning my ankle didn't look much like an ankle at all - there was no shaping at all, my leg just seemed to end in a foot with nothing in between.

The pains grew worse, and more diverse until the point when even the small joints in my fingers and toes were hurting.

My fatigue reached a point where I was sleeping all day. I was also nauseous, and had a couple of nights of alternating between sweats and chills. I was guzzling coffee and binge eating to try to get the energy to stay awake for a couple of hours each day.

So, over all, I guessed that, yes, the sulfasalazine had been doing something after all.

I've started taking it again.

After a few days back on it, I'm a little less tired, and a little less sore, but I've got some way to go to get back to where I was before stopping the drug.

My drug cocktail is based on trial and error.  Some of those trials are pretty awful, and the errors I'd rather avoid. But this is life with lupus.

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Well, Bloggone It!

Why do I blog about lupus? Isn't just living with it bad enough? Why write about it as well?

(Yes, this is a meta-post, I'm blogging about blogging.)

When I was diagnosed with lupus all I knew about it was what I'd learned from watching House on tv.

Despite what you might think from House, however,  lupus is quite common.  Knowing about it isn't so common.

So I set out to learn about my condition, then decided to find a way to share what I was learning to help   raise awareness of a disease that although common, is not very well understood by the community.

What the blog has developed into, however, is something different.

I found that the people reading it weren't generally people who were wanting to find out something about a condition they'd just heard of.  Most of my readers were people with lupus, or a similar chronic condition, or people who had friends and family members with lupus.

Readers started saying things like "you say what I was trying to say."

That's when I took Sometimes, it is Lupus into other social media as well as the blog, as a chance to interact more with readers.

I realized that what was really needed was a chance for lupies to know they were not alone, and to be able to express what life was like for them.

Now the blog is still about my life with lupus, but it has an added dimension.  Through social media, I'm also  listening to other lupies, and trying to bring their experience into the blog as well.

Now, Sometimes, it is Lupus, isn't just there trying to tell the healthy population what lupus is, and it isn't just me saying "this is what this disease is doing to me", although it still does both of those things.  It's also an opportunity to give a voice, if only a small one, to a community of people who might otherwise feel isolated and alone.

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This post written as part of a blog carnival hosted by Restoring Quality of Life. If you'd like to see how other bloggers responded to the same topic, the blog carnival is here.

It's The Worst

Lupus bites!

It just does.

I hate all of it: the pain, the fatigue, the limitations on what I can do, the constantly swallowing pills, the risk that any organ could suddenly fail, the avoiding sunlight, etc, etc, etc.....

But for me, the absolute worst, the one thing that just tops everything else for horror, is that my brain doesn't work the way it should.

I've always considered my brain to be the best part of me. I'm intelligent, I'm creative, I've always had a great memory.

But now....

Now, I do and say stupid things. I was holding the baby the other day, talking to her, when my daughter interrupted: "Ah Mum, that's not me, that's Johanna."  I knew that, right? I know that my daughter is 22, and the four month old is her daughter. Well, I do right at this moment.  At that exact moment I was a little lost.

I hate not being able to lead worship - and worse I hate that the last time I did, the sermon I'd written suddenly didn't make sense and the words all seemed to be gobblydegook and I didn't know what to do about it.

I'm not particularly keen on hallucinations, either.  Seeing a strange woman without a face in my flat was disconcerting, to say the least.

Writing is just a part of who I am, and it has been since I started writing stories as a child. But now, half the time I can't spell, have trouble with punctuation, and write ungrammatical sentences.

I have trouble organizing my thoughts, and even more trouble organizing myself to do anything.

So that's the absolute worst for me.... messing with my body was bad enough, but once lupus started messing with my brain, things just became far too frightening.

But that's just my experience.

The one thing that's consistent with lupus is its utter inconsistency, so I asked some lovely lupies on social media what was worst about lupus in their experience.

For lots of people, the pain and fatigue were the worst thing.

For others, it was things they had lost: their jobs and income, their homes, their independence, the ability to do things they used to love, even some friendships.

For some the worst is the cost of managing lupus, some with insufficient health insurance or no health insurance at all.

For some the worst was the unpredictability of lupus - of not being able to plan because there's no way of knowing in advance what will be a good day and what will be a bad day.

For lupie mums, feeling that they're not able to care for their children the way they want to, even being in too much pain sometimes to hold their own babies, is the worst.

Some lupies have other health issues as well, throw in cancer or something equally horrible, on top of the horribleness of lupus and you have a nightmare Stephen King couldn't have scripted.

For some lupies, the vampire life of avoiding the sunlight is a huge sacrifice, especially if they have children who want to do things outside.

Some have found the mental health issues that are often a part of lupus - anxiety and depression - are the worst thing.

For a number of people, the worst thing was becoming isolated.

One lupie who answered, said the worst was when she wasn't diagnosed and didn't know what was happening to her.  Knowing what was wrong and beginning treatment had come as a huge relief.

Some of the people who responded were friends of lupies, who found the worst things were:when their friend forgot they'd been there for them; when they had to watch their friend go through the pain and fatigue; or when they lost a friend to lupus.


As I said at the beginning, lupus bites.

With bodies that don't bend where they used to, pain in places we'd never known we had places, fatigue that makes Sleeping Beauty's 100 year nap seem reasonable, the uncertainty of whether or not we'll be able to do tomorrow what we can do today..... there's a lot that's bad.  But the absolute worst? That's different for all of us. And it's different on different days. Because that's how lupus is. The only thing that's consistent about it is its utter inconsistency.


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