A Bit Foggy

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I think I've said I've been feeling really well lately.

But yesterday afternoon, something happened that reminded me I do still have lupus, even if it's pretty much under control.

It's been dark, rainy, cloudy weather here for days, and since all day is dark, I'm losing track of time.

I looked at the clock yesterday, and panicked - it was 6.33pm, and I was supposed to be at a meeting two suburbs away at 6.30.  I wasn't ready! How could I forget it? I have the same meeting every Thursday.

I started to rush around picking up the gear I needed and said to my son I wished I had a mobile number for someone who was going, because it was too late to call anyone at home.

That's when my son pointed out that I wasn't late at all. I was almost 24 hours too early. My meeting's always 6.30pm on Thursday, and it was only Wednesday.

Brain fog is a normal part of lupus. It can leave me doing the strangest of things - forgetting my coffee is being made, and find the cup is overflowing, and the coffee maker has also made coffee for the bench, floor, etc. It can make me a bit hazy on the days of the week.

Most of the time I manage it by writing things down.  My mobile phone keeps all kinds of data for me: appointments, lists of things to do, shopping lists, pretty much anything it's important for me to remember. Even so, I sometimes do things like walking into a room and wondering what I'm doing there, or lose track of the day of the week.

Being Miss Havisham

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I've come to a conclusion that really surprised me....

For ages now, I've been thinking that the reason I don't put my profile on a dating site, and start dating again, was because I was still feeling so sick.

But I'm feeling much better since starting on sulfasalazine. Someone has asked me out, and I guess he's nice enough, but I'm just not interested.

This is it - pretty much every issue in my life I'm used to blaming on lupus. I'm too tired, I feel too sick.

Right now I feel fine, physically. I'm as well as I ever feel.

But I'm still not back on track with my diet. And I'm still not doing anything about starting a new relationship. Why? I'm still stuck wanting to be with someone I clearly can't be with.

What am I going to do about that? That's what you really want to know, isn't it?  I guess now that I realise that I'm still in grief, I will do what it takes to deal with grief.  I'll accept it, wait for the worst to pass, and see what my life looks like then. There's no way to avoid grief or speed it up or just get over it.  It's something that just has to be lived through.  The good thing is it is survivable, and while every loss in life leaves a permanent change, the pain is not permanent.

And no, I don't intend to model myself on Dickens' Miss Havisham. I'm not going to lock myself away.  When I'm ready, I'll get out there and start looking again.

Panacea

The dream: to be able to replace all the whole
drug cocktail with one effective treatment.

A panacea is a treatment that will cure all ills - and if you believe some of the tweets I've been sent lately, you'd believe that one has actually been found. It's low-dose naltrexone.

Naltrexone's a drug which is used to treat drug addiction - it reduces the affect of opiates on the brain.

But there's also been some initial research that suggests that it low doses, it might be able to one day be used to treat other conditions.

Now, here's the kicker, this research is at its most early, basic stage. Science is about setting a theory and testing it, and retesting it, and retesting it, constantly trying to prove it wrong. Only when numerous tests have achieved the same result does the theory then become adopted as something that can be used for practical purposes.

Early tests for some things have proved positive. But one has to say that running a trial on a single lymphoma patient is hardly evidence that it will cure all lymphoma everywhere. Nor does a positive result for a small group of fibromyalgia patients mean that this is the idea treatment for everyone with autoimmune disease.

Claims have been made that LDN can be used to treat all autoimmune disease (where the immune system is over-active), through to AIDS/HIV (where the immune system is deficient), along with multiple kinds of cancer and numerous other conditions, even autism and Asperger's.

These are all off-label treatments, that is they are non-approved uses for the drug. As in not approved anywhere. (It's not like a drug being not approved in one country while it has been widely approved overseas.)

It would be wonderful to believe in a panacea - in a single drug that could cure everything. But so far, that is a long way from being found. As for LDN, some of the early research looks promising for some conditions. Let's hope it continues.




References:
Genetic Engineering and Biotechnology news.
LDN Science Clinical Trials
Science-Based Medicine
Wikipaedia

(OK I read a lot wider - but these are a good starting point if you want to read both sides of the argument for yourself.)

Taking Time Out

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I had a list of things to achieve today.

It's lunchtime, and not only have I not done anything, I'm still on the couch in my dressing gown.

I think I'm still getting over the shock of not being in pain.  (I did have some pain during the night, ankles, lower back and left shoulder. Given how much I did yesterday, that's not surprising.)

I haven't had a nap yet today - and probably will have one, but I'm not at that point of exhaustion that I've usually reached by now.  This is something I haven't experienced for a few months - not since my steroids were reduced in February.  After a week on sulfasalazine, it looks like I've turned a corner.

I'm going to catch up on my work - but just today, I'm going to set the day aside to enjoy feeling well.

A Pleasant Surprise

"Birthday" Celebration in Church today

It's almost 5pm and I've come to a sudden realisation - I'm not in pain.  I haven't been in pain all day.

The sulfasalazine must be starting to work.

I'm still tired and nauseas.  But to be fair - I've only had a half hour nap today. I was up at 6.30am to get ready for church. It was the 35th anniversary of the Uniting Church in Australia, and my son and I went in early to surprise everyone by having the church decorated for a birthday party.  Since church and morning tea, I've been shopping with my son, and been out for coffee with twice (with different friends). And I went to bed late last night because I was making birthday cake.  So maybe I've earned being tired at the moment.

The nausea's annoying, but it's not as bad as it was earlier in the week when I started the sulfasalazine.

All in all, I've got to say, it's been a surprisingly good day.  I think I'll have a little nap before I cook dinner. And hope for more good days to come.

Sulfasalazine

I went to the rheumatologist on Monday.

I've really been missing how well I felt with 15mg of prednisolone in my drug cocktail. I'm down to 5mg now, and with the reduction in steroid, I had an increase in pain and fatigue.

On Monday, the rheumatologist added low dose sulfasalazine into my cocktail instead.

I've had sulfasalazine before - but I'd had it instead of plaquenil. It didn't work as well as plaquenil for me - but this time around, I'm taking it in combination with the plaquenil.

Like most of the drugs in my cocktail, it does have side-effects. It can cause nausea, diarrhea, loss of appetite, and sun-sensitivity. Of course, with those side-effects, that's pretty much half my drug cocktail, so I wouldn't know what was causing it anyway. I did have a very upset stomach for the first couple of days, but I seem to be adapting quite well now.  I also slept for a fair bit of the first two days of taking it - but was sleeping all day most days since my prednisolone was reduced anyway, so that really doesn't mean anything.

What am I hoping for from this new drug? That in combination with all the other drugs I'm taking, it will cut down on my pain and fatigue, and allow me to get through the day with only a short nap.

Feeling Flat

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I went to BreastScreen Queensland for my regular mammogram today. The letter arrived months ago telling me it was time to make the appointment. I delayed and delayed - and two more reminder letters arrived.  Eventually, I made the call.

If you've never had a mammogram, there's a simple way you can approximate the experience at home. You'll need two hard sheets of perspex, a stranger, and a vice.

Have the stranger (preferably with very cold hands) push and prod your breast and place it between the sheets of perspex.  Then place breast and perspex sheets into the vice, and tighten to the point where you are just short of passing out from the pain. Then hold your breath for 20 seconds.

Loosen the vice, and have the stranger rearrange your breast so the perspex is on both sides of it from another angle. Then re-clamp in the vice as before and hold your breath.

Repeat the whole process with the other breast.

The whole thing was over in less than half an hour. Now the x-rays from today will go to a BreastScreen doctor, who will look for any abnormalities, and compare them to my x-rays from two years ago. I'll get a letter in a couple of weeks with a result and so will my doctor. Unless there's something wrong, then I'll get a phone call to come in.  I don't expect the phone call - there's no lumps or bumps or anything else I can see or feel. (Although, of course, the mammogram can pick up things too small to be seen or felt.)

A mammogram is far from pleasant. But I've known lots of people whose lives have been damaged for ever by breast cancer, a mammogram to detect it in the earliest phases is worth the unpleasantness.

This Person is a Compulsive Liar

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It's confession time. I'm a compulsive liar and a con artist.  To be fair, however, so are most people with lupus or similar chronic conditions.

Take the following situations for example:


Situation: Someone says: "How are you?"
My answer (lie): "Fine."
Truth: Everything hurts, getting out of bed this morning was so tiring that I need a nap to get over it and my head is aching.

Situation: Someone says: "Hey, I like your new hair colour."
My answer (half-truth): "Thanks I love this colour."
Truth: Plaquenil strips the colour from hair - so my hair grows translucent. The see-through roots make me look bald unless I re-dye my hair regularly.

Situation: Someone says: "You look good."
My answer (evading the issue): "Thank you."
Truth: I look good because I used up half the energy I have available for the day in very carefully applying make-up so I don't look like Dracula's sister.

Situation: Someone asks: "Do you need help?"
My answer (flagrant lie): "No, I've got it under control."
Truth: Yes, I need help. I am too proud/independent/stubborn/pig-headed/choose your own adjective  to accept it. I will make myself sick trying to take care of things myself before I accept someone else's help.

Situation: Someone says: "That colour you're wearing really brings out your eyes."
My answer (half-truth): "Thanks, maybe I should wear it more often."
Truth: That low-grade fever I always have is a bit higher than usual, and as a consequence I have really glassy eyes.

So there it is. I am a liar. I constantly try to con the people around me and about half the time I get away with it. But before you go throwing stones, if you're a lupus patient, I bet you've told a few half-truths or blatant lies yourself.

Sticking My Neck Out

Stress is not good for lupus. Which is why I shouldn't have done it.

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On the other hand, the reason God gave me a neck is because sometimes there's a right time to stick it out.  Mind you, I didn't realise I was sticking it out when I started this morning.

I'd heard yesterday that the Premier had announced a change to civil unions. (For people outside Queensland: civil unions were implemented by the previous government as an alternative to marriage - available for anyone but mostly for people who are gay and don't have the legal option for marriage.) The change announced yesterday, was that civil unions would continue to be legally registered, but there would no longer be a civil ceremony for the unions.

I'd been thinking about the situation overnight, trying to work out the appropriate pastoral response to the matter.  I was thinking pastorally - I'm a minister, that's what I'm supposed to do.

What I did this morning was put out a tweet.  I put out lots of tweets. They don't normally get retweeted a dozen times and get me an interview on the ABC radio drive show.

What did I say? Just this:

Iris Carden ‏@IrisCarden

No ceremonies for civil unions? See me for a Christian blessing service. @theqldpremier has no authority over the church!

All I intended to convey in the few words Twitter allows was that the change in law might affect civil celebrants - but ministers of religion can do a blessing service of pretty much anything we like. I've been asked to bless everything from babies to houses. I see that it's important for some people to feel that they have dedicated all aspects of their lives to God - including their relationships. (After all, that's what brings people to the church for marriage.) I am always willing to pray with people, to help them celebrate the significant points in their lives, and to thank God for those significant points.


So now, in a bit over an hour's time, I've just had a call from the Westside News, and I'm being interviewed on 6.12 ABC local radio's drive show here in Brisbane.  I'm a bit stressed.  Sure, part of the time I was a journalist I actually worked for ABC regional radio. Back in those days (and they are long ago) I was the person asking the questions. Today I don't get that kind of control. 


And I've now started emailing the various levels of the church to confess what I've just blundered into.


And I am very stressed.

One Step Forward, Two Naps Back

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I was patting myself on the back on Friday. I'd got the service for church on Sunday written, and even with the powerpoint presentation ready, and I'd gone out for lunch with a friend.  And of course, I'd had the obligatory morning and afternoon naps. I had achieved heaps.

Of course, to do that, I didn't do any dishes and I missed hydrotherapy.  I've missed dishes a few days lately, and never quite catch up.  There's a whole lot of things I miss, so the undone work always seems to outweigh the done work.

There's a house inspection coming up in a couple of weeks. I haven't been able to tie kids down to help clean because they're in the middle of exams and assignments and are precariously balanced on the borderline between frantic and manic. Fortunately for me, one of the ladies at my church is a professional cleaner, and says she can fit in helping us catch up - for far less than a regular cleaner would charge.

It's a wonderful thing to have the support of a church family.  My lunch today was a delicious home-made chicken and vegetable soup - not made in my home because the smell of meat cooking has been making me sick. One of the ladies from church gave it to me. All I had to do was reheat and eat. (I'm very good at doing both of those things.)

Another lady (a member of the weight loss group) regularly gives me low-GI potatoes when she buys them for herself.  You can't get them just anywhere, and not at the shopping centre that's right near my home.

Those practical gifts make a of difference. One less thing to think about or worry about, one thing off the "to do" list, makes a huge difference when energy is so scarce.  But it does a lot for me emotionally and spiritually as well, to know that not only do these wonderful people accept me as I am - but that they love me and want to help.

There may be things I miss out on in life.  But God has given me some great compensation, in the form of some of the most amazing, loving people in the world.

Bunnings, That's Where the Men Are

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For as long as I've been seeing my rheumatologist, he's had a couple of standard lectures for me. One of them is the one about how I should get married.

Yesterday, my GP joined the chorus.  It's been so long since Mr Wonderful and I broke up, I ought to be doing something about getting into another relationship.

She even had some helpful advice. I should go and hang out at Bunnings (hardware chain) because that's where the men are. Amazingly, she managed to deliver this profound advice with a straight face.

I hadn't known that Bunnings was the equivalent of the nightclub scene for people past a certain age (and am I ready to admit I am past that age?)

What kind of pick-up lines do you suppose people use there? "I see you're buying tomato seedlings. I like tomatoes too. You want to go out for a salad?" Or perhaps: "Hammer and nails - wow, you're just prepared for anything aren't you?"  Maybe: "Do you know which aisle the saws are in? I just love to cut things up, don't you?" How about: "We're buying the same kind of glue? Maybe we should stick together."

Of course, I have some problems with Bunnings. It's the kind of place a girl could break a fingernail.  Not only that but I gave a friend, who does shop there a lot, Bunnings gift vouchers for her birthday. I'm fairly sure that if she'd got a man with them, she would have mentioned it.

Beyond that, I always take one or other of the offspring if I have to go there. I may grow herbs and strawberries in pots, but I don't personally lift and carry bags of potting mix. Who meets a new partner when they're with their kids?

I'm also told that most men hang out at Bunnings on Sunday mornings. I'm kind of busy on Sunday mornings.

It all seems overly complicated, so I'm going to propose a new system. How about this? Bunnings introduces a "dating board".  Women can give them our photos and profiles (just like for an internet dating site), to go up on a big notice-board.  While men are browsing the aisles for their tools and toys, they can also collect contact details for women they might like as well.  That means we get the advantage of hanging out at Bunnings, without actually risking a nail by going there.

Weight Loss: Other Issues

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Tonight at weight loss group, we're going to look at issues other than diet and exercise.

Health is a matter of more than the physical.  Human beings are social, emotional, spiritual, intellectual, as well as physical.

Whatever is happening in one area of our lives will have an impact in other areas.

A person who is struggling emotionally is unlikely to want to exercise or eat healthier. A person in the middle of a huge family dispute has concerns other than looking after themselves.

Tonight, we're having a discussion about our lives, about how each person in the group looks after the other needs in our lives.

Disney Lied

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I've re-read some of the Grimm Brothers fairytales lately. (Got them free on my new ereader.)

Do you know what the difference between the original fairytales, and the Disney version is? The Disney version invariably ends with them living happily ever after.

In the originals, some people do live happily ever after - and some suffer horrible fates.

I've been thinking about this whole love and living happily ever after lately, and I think either Disney lied to me, or I've been short-changed somewhere.

Last week, someone lupies on Twitter if we had the choice of love or a cure which would we take.  I said I wanted both, but either would be better than the neither I have.

Seriously, which would I choose?

I can tell you that not having someone here to hold me on those days when I just want to give up, really is awful. If I had someone to love me, that would be easier. If I had a cure, I wouldn't have those days anyway.

Well, that explains everything!
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Of course, the times I most feel I want someone, are the times I'm least well enough to look.  I don't put my profile back on the dating site where I met Mr Wonderful, because I don't have the energy to go through the whole process of searching again. Sure, I did it all before when I was relatively well, but the wheels fell off just in time for me to get sick again.

Maybe next time I'm relatively well, I'll try again. But in the meantime, while I'm sick, I'm facing it pretty much alone. Yes, I have kids, friends, church, but it's really not the same.


Love, or a cure? I can't decide which I would rather have.  But I can tell you for certain, having neither really is miserable.

Gluten-Free Pumpkin and Lentil Soup

This one is easy to cook, and freezable. This amount serves about 4-6 good serves. It's gluten-free, lactose-free, and vegan-friendly. The ingredients are low-fat and low-GI. Best of all, it's a great dinner for a cold, rainy day!

Pumpkin and fresh herbs straight from the garden
add colour and flavour to this soup.

1 kg diced pumpkin
1/2 cup red lentils, washed
1/2 large onion
2 teaspoons prepared curry paste
2 teaspoons vegetable stock powder
A big bunch of Italian parsley
A big bunch of chives

Water, as required.

1. Place ingredients in large saucepan.
2. Add water to cover.
3. Bring to boil, cover and simmer until pumpkin is soft (will vary depending on how large you cut the pumpkin.)
4. Mash or puree.
5. Add water until soup reaches your preferred consistency. 
6. Bring to the boil again, stir and serve.
7. If soup is thinner than you'd like, leave the lid off and boil, to reduce the liquid.
8. (It stops it being vegan-friendly, but I serve mine garnished with a tiny drizzle of low-fat lactose-free cream, and a shave of parmesan cheese.)