Saturday, 27 September 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.)

Monday, 15 September 2014

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.

Monday, 1 September 2014

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.

Tuesday, 8 July 2014

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.

Sunday, 29 June 2014

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.





Thursday, 26 June 2014

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.

Monday, 23 June 2014

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.

 

Monday, 26 May 2014

"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.

Tuesday, 20 May 2014

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.