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.

Tuesday, 13 May 2014

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.

Saturday, 10 May 2014

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.

Wednesday, 7 May 2014

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 2014 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.