December 31, 2012 § 8 Comments
Well it has been a bit of an odd year. A year out of perspective, one that really, I’d rather hadn’t happened. But it has and I need to get on with my life and move into the New Year and take advantage of the freshness of that change.
I was talking to a friend this weekend and she said to me, “but Susie, when people have life changing events happen to them, like being told they’ve got an awful illness, they change their perspective on life and start to make changes, do things they’ve always wanted to, you need to do that too”.
I just didn’t know what to say, other than, I just want normal back. Yes, I did go through a period where I had an almost religious reaction to my diagnosis and felt I should do something ‘worthwhile’, but I quickly moved into the next phases of denial and depression. Maybe that’s a failing in me, but I can’t force myself. Yes of course I’d love to travel and achieve some professional goals and loose weight and spend more time with friends and all the usual stuff you want to do in a new year. But, what I really want, is normality, to be able to go for a proper long walk without fear of hurting myself so badly, that I’ll be unable to walk for a week, to not feel dreadful all the time and tired and sore. If I can achieve this in 2013 I’d be very happy with that.
To all the blog readers, sick and well, hope your 2013 is everything you want and hope for.
November 24, 2012 § 6 Comments
It seems there are two types of people, those that shower and those that bath. I’m normally a shower person, but I used to be a bather. In fact when I was growing up, in 70s northern England, having a shower was for posh people, or those from ‘down south’. In fact, where I grew up, I’d probably have been beaten up at school if I’d had a shower (beaten up by both the teachers and the other kids…).
I eventually did become one of the posh kids and had my first own, private shower, when I bought my first house at age 30. Even then, the house was so run down that the shower was held up by Sellotape.
Ever since, I have showered, it’s just quicker and you don’t have to wait around for a bath to fill up.
But today, I was having a sore day and my chest was bad and I felt generally unwell – probably because of tapering the prednisolone. I felt like I needed some soothing, something that would ease my aches and pains and suddenly I remembered I have a bath! That strange white thing in the corner of the bathroom with shiny taps on the end that allow water to flow out of them.
So I ran the bath and yes it took ages to fill up. But when I got into it, the immediacy of the soothing effect was astonishing. I instantly felt comforted. The aches and pains flitted off into a memory and even my breathing problems subsided. I lay there in a happy bubble feeling almost normal.
As I lay there, I remembered back to my first shower after getting out of hospital for the first time; I remembered being afraid of falling because I was so shaky and weak. I remembered needing Steve to come in afterwards and change my biopsy dressings and put my creams on. I remember feeling very ill.
And as I remembered all of those feelings I thought to myself, haven’t I come a long way.
November 12, 2012 § 4 Comments
I went to see a pulmonary specialist the other day to try and get to the bottom of my chest problems. I came away from that appointment, angry and insulted and let down.
I’ve have had a cough and chest problem since April, which if you’ve been reading my progress you’ll know coincided with all of the muscle involvement. Dermatomyositis can have lung involvement and can cause interstitial lung disease (ILD) which is a very nasty condition and basically, you do not want to get that.
In the early stages of my diagnosis (early June this year) I had a full body CT scan and chest x-ray and various pulmonary function tests and the conclusion after looking at the results of all these tests, was that I must have asthma and I may well have had all my life, but had never been diagnosed (just as an aside, Ive never had any inkling that I had any asthma like symptoms prior to getting this disease).
When I was told this, it was about a month after starting treatment for Dermatomyositis, which includes taking high dose corticosteroids, namely prednisolone. So the doctor said, let’s leave it a few months, as this is the treatment we would give you for asthma anyway, so it should clear it up. Great I thought, kill two birds with one stone and brilliant it’s asthma rather than ILD.
So here we are 4 months later and a hell of a lot of corticosteroids ingested. My chest problems remain. I have good and bad days. My worst days cause me pain on breathing and very shallow, tight breaths and a constant dry cough: It’s just as bad sitting as when I’m moving about. Good days, I have a bit of a cough still and a slight tight chest.
I presented the above to the consultant: A different one to the one I saw initially. He was very young, should that make a difference, maybe? I asked him why, after being on high dose steroids since June, did I still have asthma symptoms? He couldn’t answer that. I asked, could it be muscle involvement, after all, I have a disease that wastes muscle tissue? He said he didn’t see any reason to believe that, as the pulmonary function tests didn’t show muscle involvement.
He then said he needed to consult another doctor and would I mind waiting. He went off and was away a little while. When he came back he said that the only explanation for the continued asthma symptoms was that I was too overweight and I need to cut down on food as I must be overeating.
Ok…well I have put on weight since being on steroids, but seriously I am not that overweight, I am a UK size 14 now, that’s a US size 10. I absolutely do not overeat, my calorie intake is less than 2000 calories a day, I am gluten free, I eat fairly low carbohydrate and I make sure my protein intake is through fish and eggs. I also eat only high cocoa solid chocolate (70%+) as a treat, rarely, I will eat some ice-cream, but in very small amounts, in other words I am very diet aware.
I made sure the doctor knew this, as he did not once ask me about my diet, also he did not once make any comment on my disease and the fact you need to have a good diet. He insisted that because I was on steroids they would effectively force me to eat more (I know some people have food cravings when they take steroids, that has not been the case for me, I eat less now than I did before I was ill).
I explained to him I had a disease that affected my muscles and exercise was difficult, so I ate fewer calories to compensate, but i didn’t want to eat even less as it may affect my nutrient and protein intake. Not once did he offer dietary advise, all he said was that basically it was my fault and I wouldn’t get better unless I accepted that.
I was so angry!
Then to make matters worse, he said I need to take a steroid inhaler and that..wait for this one, this is the most amazing statement…it was a ‘test’ and he didn’t expect it to work, but just in case.
So, now Im expected to take even more steroids into my body, even though it has been shown they are having little, if no affect, on my chest problem.
I don’t expect doctors to be miracle workers, especially when it comes to a rare disease that has had little research, but taking the time to empathise with a patient and ask questions and listen, rather than make assumptions, might actually open up some area that hasn’t been explored and by doing so, we may find out a cause that wasn’t expected. Good science and in turn good medicine, come from an open mind and a willingness to explore.
Intersting, most recently, there’s been some research in the UK that states that, “working out a patient’s preferences is as important as an accurate medical diagnosis”. Hmmmm food for thought (pun intended).
I’ve decided I won’t be using the steroid inhaler and I’ll be seeking the opinion of my local GP instead. In the meantime, i’ll put up with the chest problems and hope they improve as the dermatomyositis improves.
I’m still well annoyed though. ROAAARRRRRRRRR!!!!!!!
And he has spoiled my dinner.
October 25, 2012 § 4 Comments
I was having a really great coffee in a little cafe in town and on my way out heard someone call my name and say hello. I have to admit I had no idea who it was but said ‘hi’ and obviously looked sufficiently dopey and vague for them to remind me of who they were. Well even that didn’t click immediately but we started a short conversation – with me madly trying to remember who this person was. Thankfully it finally dawned on me, but not until they reminded me that I gave them their first permanent job some 21 years ago. And so now I remembered. He went on to remind me that he was just out of school at the time and was engaged in the organisation I was in as a very young trainee. On reflection I remembered him as a really nice, friendly, motivated guy and yes did recall helping him out with a job for all those reasons. Anyway in the course of the brief conversation he went on to tell me that he is now doing consulting work in the IT industry, earning an excellent executive salary. He concluded the conversation thanking me for helping him on his way – in fact said that that was the important break in terms of getting him on track for a decent career in the IT industry. I felt very proud and very humbled.
Why is this story so important? Well for me its important because it reminded me that despite the ups and downs of this year (of which there have been plenty), that I have made a difference that counts to someone. For me it was a reminder to look at the good things that happen rather than the things that are bad or don’t work out. It made me realise that the impacts we have we may not realise until years later or may never even know at all – but notwithstanding that, the impact has been made and someone has been touched. It was a sobering conversation at a time when I am thinking abut my future. I think we all have these moments. This is the one I am sharing with you.
October 20, 2012 § 6 Comments
This last week has probably been the most difficult of all in terms of how I have managed my treatment – the chemotherapy. I have probably felt sick and tired more than most weeks and my mouth is now very sensitive and sore. I think I have been pretty lucky to escape the constant nausea feeling but this week there have only been a couple of days where I haven’t felt ill. I also think I might be stressing out a bit about it because I wake up most mornings with a headache. I have also been pretty lucky with my mouth which has been in good shape until just the last couple of days. My tongue feels burnt and raw, the sides of my mouth feel like they have been cut and inside my mouth there are ulcers. Even my teeth hurt when I clean them – so much so that I dread having to do so.
On the up side i did manage to go for a couple of little walks this week. It is warmer here now which makes me excited to get outside and into the warm air – a change from the freezing weather of a cold Canberra winter. I suspect that the little bit of extra walking has added to the tiredness.
I have chemo again on Monday and for the first time I am really dreading it. Perhaps what I am dreading is that I know the couple of weeks that follow will likely be more like the last couple than when I started – when everything was a bit easier to manage. I can smell the chemo on me most of the time and especially when I go to the toilet. I dry reach these days just thinking of the smell. It is hard to explain what it is like – just awful and all the m0re awful because now I associate it with the nausea.
Another person I know was diagnosed with breast cancer this week. I thought of her all last night – knowing what it is like in those early days and not knowing what to expect in the future. Her journey is just beginning and I am all too familiar with how scary that is. I was talking to someone else yesterday who told me about a young guy with three small children that died during the week. He was diagnosed with kidney cancer three weeks ago. How is it possible for it all to happen that quickly? How is it that someone doesn’t know they are that sick until they literally have only three weeks to live? Life is such a mystery sometimes. The family of that guy have also been on my mind as have my own thoughts about what you would do if you were told you only had three weeks to live. I decided I wouldn’t try and do too much – i’d just want to help the people I love come to terms with it before I left. I don’t know there is all that more I could do.
Life deals some tough blows.
October 9, 2012 § 5 Comments
As you know I am trying to stick to a gluten free and autoimmune boosting diet. But sometimes, you just crave something sweet. So today I made some gluten free banana muffins and I want to share their banana goodness with you.
Here’s the recipe (not mine, I got it elsewhere, but can’t remember where now). One thing, because we are all weak runts of the litter and have hardly any arm muscle left, we are allowed to use a food processor without guilt. I love mine, I couldn’t bake without it.
I try to use fair trade and organic where I can, but of course, you don’t have to.
110 g unsalted organic butter
110g organic fair-trade caster sugar (alternatively, you can use a natural sweetener like Stevia if you want to reduce the carbs)
2 free range eggs
1 tsp vanilla essence
3 ripe fair-trade organic bananas
1 tsp baking powder
175g Rice flour
50g corn flour
75g sultanas or raisons
Using that all important electric food processor:
Add the sugar and butter and whisk them together till fluffy.
Then add the eggs and vanilla essence.
Keep whisking till mixed.
(I always have to stop at this point and make sure all the bits are pulled into the middle to ensure even mixing)
Squish the bananas one by one into the mix, mixing as you go. It feels quite nice, but it’s a bit messy.
Then measure out the rice powder, baking powder and corn flour and sieve this into the mix slowly folding it in.
Finally add the sultanas and fold them in, then spoon the mix into little bun or muffin cases.
Now I put mine in an AGA, which is already at temperature, for about 20 minutes. But, if you have an ordinary oven I’d try it at about 200C.
Let them cool before eating. Well you don’t have to…
Then turn around and look at the awful mess you’ve just made in the kitchen.
They are really nice, delicious in fact. I wouldn’t eat too many at once because they do have sugar in, but at least they’re gluten free which according to the US based Myositis organisation is a good diet to follow – there’s some good advise on Myositis and nutrition here.
In the end I only ate two, as I realised I do like the odd sweetie but I think I actually prefer savoury.
September 24, 2012 § 10 Comments
As I said in a previous post, I’m following a diet that will hopefully boost my immune system and help me fight dermatomyo – shite -is (AKA dermatomyositis).
The problems with following this diet, whilst suffering from this illness, includes the fact that sometimes you literally do not have the energy or strength to cook. My leg hurts often and I am very tired a lot of the time, so sometimes it’s hard to stand for extended periods to cook – and trust me, getting Steve (bless his cottons) to cook for me, is NOT a good idea…
So I rely on easy meals and often ready made meals. When I say ready made meals, I’m here talking about very high quality ones that tend to cost a lot. Therein lies another problem with following a good autoimmune diet whilst very ill – it’s expensive.
However, here’s a simple meal I made, as an example of what I try to eat (I must admit that sometimes you just have to have a plate of gluten free fish fingers and chips).
Take your salmon fillet and add a butter slice and some herbs of your choice – no salt!
Wrap it in foil and cook in an oven for about 20 minutes. You could pan sear it, but it makes a right mess in the pan and remember we’re trying to reduce time standing.
Then use a good quality stir fry mix, or salad, to finish off your meal:
I use olive oil to fry with, it’s apparently good for handling cholesterol and has all sorts of positive benefits, including preventing colon cancer and reducing blood pressure (things that we DM’ers are at an increased risk of).
When finished, stick ’em both on a plate and eat heartily (unless you have post methotrexate nausea in which case, just try to eat a little bit).
A simple meal, but by no means cheap. Maybe you know of a good, easy to prepare and cheaper meal?
Thank you Mr or Mrs Salmon, I really appreciate it
UPDATE: An excellent presentation by the USA Myositis Association, on diet can be seen here: http://www.myositis.org/storage/documents/2012_AC_Presentations/TMA-_lantner.pdf