Adaptation

I had thought it would be hard, coping with less steroid.

Actually, it's not too bad. Of course, I've only gone down from 12.5mg per day to 10mg per day - so the story may change in the next few weeks.

What I've found is that my pain levels have increased a bit, and my fatigue has come back. (While I was on 12.5mg per day, I didn't even need an afternoon nap. I had so much energy and so little pain, I even tried riding a bike.)

So why isn't it as difficult as I expected?

lupus.cheezburger.com

I guess because I've been here before.  This isn't the first time I've felt like this, and I know how to handle it.  I have to re-examine my energy budget to ensure I get what is most important done, even if everything else fails to be done. I need to go back to my energy conservation strategies, some of which have fallen by the wayside. Some of my energy conservation strategies - like using the dryer for the big stuff, I had stopped doing because in my new year's resolutions, I had decided to be more energy conscious. I've had the clothes dryer unplugged since the start of January - while I still have some energy, I'll leave it off, and hang the big stuff on the clothesline. In a month's time, when I'm down to 5mg of prednisolone, I might be reviewing that decision.


I've done basic things, like buying a hose to water my few herbs and vegetables, instead of carrying buckets of water. Thankfully, it's rained so much lately I haven't needed to water much anyway.  I have to resist the urge to pull out weeds, even though the ground is soft at the moment - but wait for a fine day and spray them instead.

It's time to rediscover all of the arthritis gadgets I haven't bothered using in ages. One day, I must share with you photos of my gadgets and descriptions of what I use them for.

New favourite shoes, worn twice, now retired.

My fabulous new stiletto shoes have been relegated to the back of the wardrobe, even though they are less than a month old.

 Yes, the prednisolone had been at a high enough dosage that I could wear high heels for short periods of time without pain.  Now my ankles are hurting when I wear flat shoes, or even clump around the house in my slippers.

All in all, after a couple of wonderful months of being pretty much "normal", I'm returning to my miserable, tired, much-pained self. But at least this time around, I'll know how to handle it. Experience is a great teacher, and I've been here before.  I survived then, and I'll survive now.

Weight Loss Group: The Glycaemic Index

My weight: last week 89.2, this week 90.6.  This shows that while I can face the end of a relationship without binge eating - a visit to my rheumatologist is far more traumatic.

This week, we're looking at the Glycaemic Index.  We've talked about the GI before - but there are new members in the group since then, and this is one of those topics we need to revisit regularly, if we want to get healthy and stay healthy.

The things I learned about carbohydrates as a teenager and young adult were basically: sugars=simple starches=bad; grains=complex starches=good.

It turns out that theory was wrong.  Once scientists actually started testing on real people what happens to their blood sugar levels after eating different carbohydrates, they discovered that sugar didn't really have a serious impact. The carbohydrate that was actually by far the worst was white flour.

For most of us, we can't just look at a food and predict what its GI will be. Most fruit and veges are low - but the humble spud is high. (You can now get some white potatoes that are grown to be lower carb or lower GI. They are, of course, more expensive.)

White flour is definitely not good, but when it's turned into pasta it is OK - that's related to the geletanisation of the starch.  (No, I don't understand that any more than you do, but it does make me sound smart, doesn't it?)

Mostly, grains are best the way God made them - with that coating of fibre on the outside.  The fibre in whole grains means it takes longer to digest them - which means they don't have a sudden impact on our blood sugar.

The good news is that we don't need all our carbohydrate foods to be low-GI. We just need to include some low-GI carbs in each meal - they reduce the overall impact of the meal on our blood sugar.

Let's focus on how to have some of our favourite meals, and still improve the GI.

• Pasta: is great - the carbohydrate is already low GI. Of course, the issue with pasta is the company it keeps. Think about what's in your sauces, and what you're having as side dishes. (A salad with your lasagne is so much better than chips.)
• Meat and veges: yes, you can have your potato, but have it with a low-GI vegetable to balance it out. So, white potato and sweet potato together is fine. Most of your other vegetables are just fine as they are.  
• Toast for breakfast: is fine, but have whole grains. The more grains you can see the better. Extra nutritional value if you top it with sliced tomato or a boiled egg instead of jam.
• Rice dishes: where possible substitute basmati rice for other white rices. Basmati, and doongara (if you can find it) are lower GI than other rices.  If your recipe calls for brown rice, that's a higher GI, but has other good nutritional values, so include a low-GI carb in the same meal with it.
• Breakfast cereals: the ones labelled low GI are helpful. Otherwise go for the stuff with the most whole grains. The more refining and processing, the less likely it is to have anything your body actually wants or needs.
• Sandwich or salad roll for lunch?  Great, just make sure your bread, roll, or wrap has lots of visible whole grains. It gives you more fibre, and lowers the GI. As a bonus it has a lot more flavour than anaemic white bread.

So that's the GI. You don't have to avoid carbs - in fact avoiding carbs can be a very dangerous thing to do.  You don't have to obsessively eat only low GI carbs.  Just try to make sure that at each meal, you have at least one low-GI carb to moderate the overall effect the meal has on your body's blood sugar and insulin levels.

References

My Rheumatologist is a Sadist!

I have come to the conclusion that my rheumatologist is a sadist who actually wants me to be in pain.

How do I know this?

Late last year my lupus flared up again.  I couldn't get an appointment to see Dr K (rheumatologist) much earlier than usual because he had holidays. In the interim, my GP Dr Trish increased my steroids.  Since she's done that, I've been out of pain. I've been able to work out so hard at the gym that I actually need my asthma puffer. I have been superwoman.

Dr K was not impressed when I saw him yesterday.  Dr Trish had put my prednisolone up as high as 15mg per day until the symptoms were under control, then brought it down to 12.5mg per day.

Dr K looked at my file - he'd had me down to 2mg less than a year ago. Maybe that was too low, but it shouldn't be this high either. There are too many problems with taking high doses of steroid for long periods of time.  He wants me down to a maximum of 5mg.

I'm down to 10mg today - 7.5mg in a fortnight - 5mg a fortnight after that. He says the other drugs I'm taking (methotrexate, plaquenil) should be able to control my symptoms with a minimal amount of steroid.

Then he asked how much meloxicam I was taking.  I confessed I was still taking that daily - every night so I could sleep.  No good. He wants me to try not taking it, only take it when I absolutely have to. How do I know when I absolutely have to take it? Just how bad does pain have to be before I take the pill? I've always just taken the meloxicam so that the pain would settle enough to let me sleep - if I don't sleep the pain gets worse, which makes sleeping harder, which makes pain worse, and it just spirals into a black hole that I really don't want to go into again.

I didn't get Standard Lecture Number One (stop trying to prove you can have a normal life), but I did get a variation of it: "You know physiotherapists tell you to use it or lose it, with lupus it goes the other way too. Use it too much you'll lose it. You've got to keep a balance." He wants me to take less of the pills that allow me to do some normal things, and just do fewer normal things.

To make matters worse, I took public transport to the hospital to see him. (Parking at the Royal Brisbane and Women's Hospital is not priced for people who are on pensions.) That meant buses I was unsure of, and the train, and time walking and standing around. So, even with meloxicam, my back was killing me last night. I would have got up and used my tens machine, but I just didn't have the energy. Today, I'm on reduced steroid, and I'm starting out tired and sore.

There were some good points out of my visit to Dr K. The Royal Brisbane is the hospital I used to work at as a chaplain, so I dropped into the Chaplaincy Department to catch up with some old friends, and had a coffee with the my former team-mate.

And best of all: Dr K didn't ask how much panadol osteo I've been taking. So I'm keeping my maximum dose of that at least until he finds out! (Another big plus - I don't see him again until June.)

Lupus and Relationships

While we were still together, I'd complained to Mr Wonderful that I didn't want our whole relationship to be about lupus - and he replied that whether we liked it or not, lupus was a part of our relationship.

I'd love to hear from other people with lupus who have successful marriages/relationships, who can tell me how to make things work.

Here are some of the things that I've found can complicate a relationship:

• Medication. I can't do anything on impulse. I always have to plan, make sure I have the pills I need. If I'm out for lunch - I have to go home before dinner time if I didn't think to take my dinner time pills "just in case". I also have limitations on when I can eat - one of my pills has to be half an hour before meals.
• Fatigue. This gets better and worse depending on whether my lupus is flaring. But going away on a holiday is complicated, if planning every day's activities has to revolve around my afternoon nap. Even when I'm well, I have to allow for nap time in my day, just in case that proves to be the day I stop feeling well.
• Food. I'm gluten and lactose intolerant. I know a lot of lupies are. That limits where I can eat. 
• Pain. I'm no fun whatsoever when I'm in pain. Like fatigue, pain limits what I can do.  Planning ahead can be difficult, when there is no way of knowing ahead of time what my pain level will be on any given day.
• Brain fog.  Try having an in-depth conversation with someone who's barely on the planet. It just doesn't work. It takes a lot of patience to put up with someone who is usually quite intelligent not even being able to work out what day of the week it is.
• Depression/anxiety. Emotional issues just come with being sick. It's hard to be sick and keep up a positive attitude. Sometimes it just all gets too much. 
• Time. I spend a lot of time doing things just to maintain my health: doctor's visits, physiotherapy, etc. My time for normal life is limited. 
• Money. Not being able to work full time, being on a part-pension, means I don't have a lot of spare money. That shouldn't make a difference to "love" but it does impact on what I am able to do.

Do I have an answer to the question of how to make a relationship with lupus work? Not really - but I suspect it takes a lot of both commitment and flexibility. I know a lot of reasons I probably wouldn't recommend anyone wanting to be in a relationship with me. 

If you can tell me how to make a relationship work - please leave a comment with your ideas. Maybe one day I'll need to know.

Weight Loss: Can't Stop Thinking About Food

My weight last week 90kg; this week 89.2kg.

Tonight's topic at our weight loss group is those times when you just can't stop thinking about food.

One of the things Dr Dorie McCubbrey writes about people who are overweight in her book "How Much Does Your Soul Weigh?" is that people who are overweight or obese tend to think about food much of the time. Her observation of people who are naturally thin was that they just didn't do this.

This, of course isn't helped by television, radio, magazines, all of the advertising that is constantly telling us about food we can buy at the supermarket, restaurants, coffee shops, fast food places, etc. There's food being constantly shoved in our faces. When we're trying not to think about food, it can seem like the whole world's against us.

So what can we do?

All of the things we looked about last Thursday with regards to stress eating, can be used to distract us from obsessive thinking about food. We can try to get our minds engaged in other things (or if desperate eat vegetable sticks.)

We can also try something I've taken from Dr George Blair-West's book "Weight Loss for Food Lovers."

(We're actually doing this experiment in weight loss group tonight - if you want to try it at home, you need a really good quality chocolate, at least 70% cocoa.)

I'm bringing several blocks of good quality chocolate to weight loss group. Everyone is allowed to eat as much as they like - providing they eat it mindfully.  Take just one piece at a time. Notice its smell, its colour and texture. Put it in your mouth and let it melt there slowly. Close your eyes if you like. Notice the silky feeling, the rich taste. Really savour this piece of chocolate. Take several minutes for this one piece of chocolate - get the absolute most you possibly can out of the experience of eating it.

If you want another piece - you're free to have it, but repeat the whole process of eating it mindfully again.

How much chocolate are you satisfied with, if you eat it this way?

How much would it have taken to satisfy the craving, if you'd just munched your way through the chocolate?

Dr Blair-West in his book says that we need to have our treats, so that we don't feel deprived and binge.  He recommends having the treat at morning tea time, because that's when we're least likely to lose control of our eating - but to eat our treat, and everything else we eat, mindfully.  His theory is that if we make a point of really enjoying everything we eat - we will be satisfied with eating far less food than if we just rush through our meals or eat while distracted.


References;

The Limitations of Lupus

I've said it numerous times, lupus impacts on all areas of life.

A friend asked me recently if I could live in another country. The country we were discussing was India, but it could be anywhere.

What I realised was: I can't live anywhere else. It's not because I'm completely in love with Australia, although I do think this is a good place to live, and it would be hard to go anywhere my children weren't (even though they are adults now.)

I can't live in another country because of lupus.

Without the Pharmaceutical Benefits Scheme
the cost of lupus medicines would be
astronomical.

In Australia, I have health insurance.  I've had it since I first started working - so for many, many years before I was diagnosed with lupus.

If I moved to another country, the chances of getting health insurance, when I'm already diagnosed, would probably not be good.

Then there is the cost of doctors.  Here, I am on a pension concession card. The government heavily subsidises the cost of my doctors - and some doctors charge only the government rebate.

The biggest expense of all is medication. The Pharmaceutical Benefits Scheme subsidises  prescription medications for Australians in Australia. With my concession card, every medication I take which is on the PBS schedule is only $5.80 for a month's supply. That does add up with the number of different drugs I take - but is nothing like what I would be paying if the government didn't subsidise it.

And of course, as an Australian living in Australia, since my health means I can't work full time, my income is supplemented with a part disability support pension. That's income I wouldn't have overseas.

So for me to live in another country, I would have to have a very good job, working full time, to be able to pay for my doctors and drugs. And I'd have to somehow become well enough to be able to work full time. Either that, or I'd need to find a very rich husband (and I haven't had any offers so far.)

It's all immaterial. I wasn't actually planning on living anywhere else anyway.

It's just another lifestyle limitation.  My younger sister has travelled to places I'll never see, and lived in a couple of other countries. She's spent more time away from Australia than she has here. For me to see the world - I meet people from other countries on social media - seeing the world through their eyes is the closest I will ever come.

ZDogg MD

ZDogg MD:

Getting impatient with being a patient? Wondering if the doctors get as restless with the whole dealing with sick stuff as we do? This link will give you a great laugh.....

Weight Loss Group - Stress

My weight: last week  90.4kg, this week 90kg.

Weight Loss Group is talking about stress tonight. We actually chose that topic before the events that led to my last post.

The problem with stress eating, is that it makes us feel better for a short time, then we get mad at ourselves for having eaten too much, and that increases the stress. By the time the next crisis comes, we're already stressed, and it doesn't take much to push us into eating to make ourselves feel better again.

So what do we do about it?

Here's some suggestions. Not everything works for everyone.

1. Keep carrot and celery sticks, green beans, etc in the fridge. If you are going to stress eat, then fresh raw veggies won't do you any harm, and you won't feel the guilt and stress afterwards from having eaten them. Think of Bugs Bunny. He's got to be a stress eater - Elmer Fudd's got a gun pointed at him, and he's nibbling furiously on a carrot.  Bugs never gets fat, because no-one gets fat eating carrots. This is your safety net.  If nothing else works, be like Bugs and nibble those fresh veggies.
2. Put a big "stop" sign on the fridge door. When you go to open it, stop and ask yourself why you are eating.  If you are actually hungry, eat something healthy. If you're not hungry step away from the fridge go and sit somewhere quietly and try to work out what is happening for you. 
3. Distract yourself. Find something else to do when you are stressed: go for a walk, read a book, watch some mindless tv, scrub the bathroom, whatever. 
4. Start out less stressed: say "no" to things rather than get overloaded; break the big jobs you have to do down into little ones and give yourself credit for achieving the little things; learn that not everything has to be perfect.
5. Look after your physical health. Physical, spiritual and emotional health are all linked. A routine of healthy eating and exercise will help protect you from becoming overly stressed.
6. Relax: make a habit of taking time for yourself, to relax, to meditate or pray, to do relaxation exercises. Taking time out each day to intentionally relax will help to keep the effects of stress under control.
7. Reflect. Keep a journal (or see a counsellor or psychologist or minister if you can't manage to do this on your own) to track what is going on in your life. Look for the patterns, and see what is causing the stress. We may stress eat at crisis points - but usually the stress is building up from any number of sources before the crisis causes us to lose control. If you can see what is causing stress, you can start to address it. 

Remember, if everything else fails, rely on point 1: eat the way Bugs Bunny does. But if you can get control of the stress levels in your life, that will be healthier for you in many ways, not just in terms of those out-of-control eating binges.

A Bit Stressed!!!!!!

I'm still feeling very good physically.

Emotionally, I'm a bit fragile. Mr Wonderful and I broke up. I don't want to say too much about that except to say that there was nothing angry or malicious - I still absolutely adore him, it's just how things are. He is still the person who has been nicer to me than anyone in my life, so any comments critical of him will be deleted, not published.

That said, I'm a bit stressed at the moment.

Normally, I have a standard response to stress. I go to the fridge, open it, and eat everything in it. Then I go to the pantry - when I've run out of food, I'll go on to the ingredients that make up food.

If you've followed my New Year's Resolutions, you know I'm not doing that any more.  I'm taking care of myself.

Which means I got to the fridge, looked inside, picked up a block of chocolate the kids had started and stood looking at it. That was the point at which I realised that punishing myself would not help anything at all. A huge eating binge would make me feel better for about five minutes. Then I would feel miserable - I'd beat myself up about being self-destructive as well as for the cause of the stress. I put the chocolate back.

Instead, I spent an inordinate amount of time checking the social networks - twitter, g+, facebook, in case anyone had desperately wanted to talk to me about anything.

Mr 17 suggested I visit one of my best friends who lives near by - but she's on a fabulous holiday in France at the moment. So I texted another friend. We went out for dinner. (I had a lean steak and salad - no dessert and a diet soft drink.) We talked. She was actually the right person to contact because she's one of my oldest friends (not as in age, but as in we've known each other for 25 years.) She knows me very well.

I'm still a bit fragile. I'm still a bit weepy, and I'm sure I will be for some time to come. But I'm also proud of myself here - I've broken a lifetime habit of harming myself with food. I've found a more constructive way to deal with my stress.

So now, I hardly get comments from you, but I want answers to this. What do you do to deal with stress? When a shock comes out of nowhere do you respond by hurting yourself (food, alcohol, gambling - some other "addictive" issue)? Do you go to the gym and sweat it out? Do you sit and cry with your girlfriends? Is there someone who knows you so well you don't have to tell the whole story, they just understand?


I am being gentle with myself this week, extra rest, extra care with my nutrition and exercise.  There can be a link between stress and lupus flares  - and I need to be very wary of not stressing my body along with my emotions.

Don't Panic

lupus.cheezburger.com

The Hitchhiker's Guide to the Galaxy is a remarkable book - which has the words "Don't Panic" written in friendly letters on the cover.

"Don't Panic" is good advice, whether you're out adventuring around the galaxy, or in everyday life, or in dealing with a chronic illness that sometimes sends strange things your way.

I am a panicker (I don't know if that's a real word, but you know what I mean.)

I have a tendency to over-react to things.  Mr Wonderful and my kids would say something like "Really? We'd never noticed!"

The good news is my psychologist is helping me with this. (Yes, I see a psychologist. As well as having a tendency to panic, I also have a tendency towards depression. I have lupus, I've got stuff to get sad about.)

lupus.cheezburger.com

She has had me start on a program called "Overcoming Panic" which is written by psychologist John Franklin. (I couldn't get you a link on Amazon for details of this one, but you can take a look at it on the Australian Psychological Society's website.)

This program involves nine weeks of daily work at home, combined with visits to the psychologist.  It works the basis of Cognitive Behavioural Therapy, which tells us that what we think affects what we feel.

The training in the book gives an explanation of panic attacks, helps to go through and say exactly what things in my life lead me susceptible to them, and then teaches techniques to help prevent them in future.

lupus.cheezburger.com

I'm just getting through the theory at the moment, and almost on to learning relaxation exercises and techniques. (Relaxation - that's my kind of exercise!)

I've come up with something interesting in the theory.  I said CBT works on the idea that what we think affects how we feel.

Panic attacks happen because I (or whoever else has them, but we'll use me for the sake of making it easy to talk about) am stressed or under pressure.  This pressure may have been building up for some time for any number of reasons: physical, environmental, emotional, relational, etc, etc. The stress I feel causes bodily changes eg a racing heart, sweating, breathlessness, etc. The panic attack happens when I notice the physical feelings and misinterpret them as something really, incredibly, bad (eg racing heart as a heart attack.) One of the things one needs to do is to stop and say, whatever is happening, how bad can it really be?

I have lupus - if something strange is happening in my body, it could be incredibly bad. That pounding heart may be anxiety, or it may be any number of conditions that can be caused by lupus. That shortness of breath? Maybe it's anxiety, or maybe it's asthma, or maybe it's lupus attacking my airways.

Realistically, if my heart is pounding, I'm sweating profusely, finding it hard to  breathe, and maybe even feeling light-headed, I'm probably having a panic attack, or coming down with the flu. But there's always that  chance that what's happening is that a really big, bad, lupus flare is doing something big and bad to me.

Then again, if it were a massive lupus flare doing something massively nasty, panicking probably wouldn't help me much at all.

I'm looking forward to getting on to the stage of the program, where I learn the techniques to stop the panic attack, just in case something happens that I really need to keep my head together for!

Reference:
Franklin, John. Overcoming Panic: A Complete Nine-Week Home-Based Treatment Program for Panic Disorder. Melbourne: Australian Psychological Society, 1996.
Available from The Australian Psychological Society.

Weighting Again

lupus.cheezburger.com

Weight Loss Group at church resumes tonight after about a month and a half break. (It's only a very small group, when a few people are away, there's no group left.)

I can't tell you how my weight is going as of today - because when I got on the scale it said "Lo", which is a reference to the battery, not my weight.  When I weighed earlier in the week, I was still exactly the same weight as I was when the group went into recess.

Tonight, we're going to work on getting refocussed. We're looking at what our goals are. Whether it's to fit into a particular sized clothes, to take of a certain amount of weight (one of our ladies actually needs to put on weight), to meet a health goal, everyone has a reason to go to a group to look at their weight loss.

My goal had been to get to a healthy weight range, to reach a point where my rheumatologist doesn't glare at me when I get on the scale.   I've revised that. If you read my new year's resolutions, it's to stop worrying so much about the numbers on the scale and the tape measure (sure, I'll keep checking them). My focus now is on healthy eating and exercise, simply because they're good for me.

For me, and I blame the medications I'm taking, the fluid retention, or I don't know what, the numbers on the scale don't always reflect the true picture of what I've been eating, or how much exercise I've been well enough to manage. So instead of the "end product", I've determined that my weight management goal is about the process.

My questions myself each day now will be:

• Did I eat lots of fresh vegetables of lots of different colours?
• Did I eat two or three serves of fresh fruit?
• Did I have some good quality protein, without accompanying fat?
• Did I have a sensible amount of low-GI carbohydrate?
• Did I have at least half an hour of exercise (if I was well enough)?
• Did my calories, tracked on Calorie King, fit within the number I ought to eat?

So that's my big weight loss goal for the year - to answer that set of questions with "yes" on every day.  Hopefully, I'll lose weight as a consequence. If I don't, I'm not going to get stressed about it.

Domperidone

I went to the doctor yesterday, afraid that with all the nausea I'd been suffering, I might have to give up or reduce some of my medication. I don't want to do that, because I'm out of pain, and I kind of like that.

Fortunately, the doctor didn't think my medications were causing the problem.  Her theory was that my stomach wasn't emptying. (I have a mental image of stuff sitting for days in my stomach going off, fruit flies buzzing around. It's all pretty gross.) She gave me yet another tablet - domperidone. I take it half an hour before meals and that will ensure my stomach empties appropriately.

"Domperidone" sounds to me like something you get at a fancy restaurant. "I'll have a bottle of the Domperidone 1985 with my meal, thanks waiter."

Whatever it sounds like, it works.  I still have a little bit of reflux discomfort, but the worst of the nausea's gone already. I hope it will just keep getting better.

So, after a week of feeling miserable, everything's good again. And I'm still taking all my pills, and still out of pain. If this keeps up, I'm going to have trouble finding something to write about!