February 12, 2013 § 10 Comments
I havent written anything in this blog for ages. It hasn’t been because I haven’t thought about writing posts, I have. It just seems to evade me to actually write them down.
I was wondering about this and asking myself, why haven’t I been able to tell you about some of my latest health issues. Like the fact that I had some bloods done lately that found an auto antibody called PMscl which basically means I now seem to have an overlap disease, schelraderma. And this (and I need to confirm this once I have my next consultancy appointment) means I have a rare form of dermatomyositis called schleradermatomyositis (say that while eating an apple!). It’s so rare there isn’t even an article about it in Wikipedia.
So why haven’t I written more blog posts of late?
I think it is because I am starting to feel better (with, or without, the schleraderma).
I am back at work full time (although often that really takes it out of me and I get exhausted).
I feel a lot stronger in myself.
I am managing to do 4 minutes on the cross trainer, twice, most days.
I can walk much further.
I am even going to my first business meeting next week: It’s been at least 10 months since I was able to, not only travel to a meeting, but actually have the strength and stamina to sit though one. It’s in london at Imperial College and its also signficant as it’s the end of a 2 year project I’ve been involved in that I’ve somehow managed, through the illness, to stay afloat with.
Myself and Suz started this blog to help us cope with a shocking and difficult reality, of being very sick. This blog and the people who read it and had conversations with me about the trials and tribulations I wrote about, has helped me to get through what has been, probably, the most difficult year of my life, both emotionally and physically.
I know I’m not completely better and it’s an incurable disease anyway, so will rear its very ugly head from time to time, but for now, I am moving forward. Dermatomyostis may be clinging onto my shirt tails and causing some drag, but I’ll wear some skates and pull it along with me, I will no longer let it control me, I want to live.
So my blogosphere friends, I say, for now, au revoir and thank you for being there with me: I wish you all, health, love, happiness and peace.
January 19, 2013 § 10 Comments
If you have been reading this blog, you’ll know I’ve got a bit of a gammy leg.
My neurologist said he didn’t know about legs so I needed to see a rheumatologist – so my GP had to set up an appointment and it took a few weeks (the wonders of the NHS). Yesterday I saw a rhuematologist at the ‘Freemans hospital’ in Newcasle upon Tyne.
In case you don’t know, my gammy leg swells up both in the front and the back of the knee and into the thigh. The back is most likely a Bakers Cyst. But the front, the doctor isn’t sure if it’s an independent problem, or connected to the cyst. The Bakers cyst isn’t that big a deal, to be honest, it’s stiff more than sore, but the front swelling, well that’s another thing altogether and affects my muscle above the knee right up the length of the thigh and that really hurts! All I’ll say is that analgesics don’t even touch it, but heat packs are great, they sooth it, thank god for heat packs.
The rheumatologist did an examination of my legs and came to the conclusion that something wasn’t right with my knee, but that she had never seen this in dermatomyositis before – she’s one of the north of England specialists in the disease, so I take her word for it. So, she offered me an MRI, or treatment and then an MRI if treatment didn’t work. I took the latter as I really wanted/hoped for relief. The ‘treatment’ involved inserting a rather large needle into my knee and injecting steroids in. It wasn’t too bad because my knee was anaesthetised (bit like getting a filing at the dentist).
I came home and within hours my knee had swollen up and the bakers cyst appeared (it sort of ‘pops’ out) and my leg was extremely painful. I had to resort to the heat packs again. I called the doctor and she said it was most likely a reaction to the steroids and it would settle down, which Im pleased to say, it has.
SO, the point of his post is really just to give you an update on the whole gammy leg episode and where I am at with it. To tell the truth, the whole thing depresses me, it stops me from building up my strength – if I do anything much, I end up with a very painful leg that I have to keep off for days. Dermatomyositis is an insidious disease that relentlessly attacks not just your muscles but your very being. I’ve not given up though, Im still fighting it and I’m determined to win. Fingers crossed this treatment works, then its onwards and upwards, no more gammy leg tales…
Oh and before I go, for your delight, here’s another ‘leg’ I found in the field next to our house (not sure who had been chomping on it):
January 15, 2013 § Leave a comment
Well it doesn’t at the minute, at least the vegetable patch that I used to love to tend doesn’t.
The pictures above were taken about 3 years ago – a good harvest that year.
Around this time of the year (in the northern hemisphere anyway) thoughts wander to little green heads, poking out of their soil beds, preparing to become delicious vegetables to adorn my plate in a few months time.
Last year at this time, unlike my normal routine, I did not plant any tomatoes, or prepare for various other germinations to happen. I had a feeling things weren’t right. At that time I only really had a rash, but I did keep getting various infections, stomach, respiratory and urinary tract. Might be a coincidence and not be connected to the autoimmune condition, but I had a series of them and felt very unwell, on and off for months. If I hadn’t been suffering from them, I may have started to plant out my vegetable patch and by the time it was nearing harvest time, I’d have been unable to tend to my babies, or bring them in. By that time, I had serious muscle involvement with my dermatomyositis and could hardly walk, let alone did the earth. So the feeling I had to not plant out that year was very prophetic.
But this brings me to this year, 2013. I really want to get my vegetable patch going again. It’s good the ground has had a year break, but I so miss growing stuff.
It took me 7 years to learn how to grow vegetables and fruit. In those years I learnt when to best plant the seed, how to look after it and tend to its needs. Growing vegetables is a little like rearing children. They need love and care, you can’t neglect them at all.
One of the things I struggled with early on was attack of the butterflies. I learnt quite quickly that unless you net your Brassica, you may as well forget about having cauliflower cheese. But when I did learn to net them, it felt so mean to stop the lovely butterflies getting their lunch, that in the end I always left a few, un-netted ‘sacrificial’ Brassica’s for them – they made short shrift of them, laying their eggs all over them and the caterpillars scoffing the Brassica’s and growing fat.
This year, I don’t think I will be able to extend myself to Brassica, but I am planning on germinating some tomato seeds soon – around mid February is when I start the germination process and it’s usually been successful.
I’ll also put some cucumber seeds in too, I like the small yellow varieties, like this heirloom cucumber.
And I will put a few potatoes in (or tatties as we call them up north). I like the yellow flesh ones like Charlotte. I might put a couple of courgettes in too (Zucchini) they are easy to grow.
And finally a few lettuce, so we can have lettuce, cucumber and tomato sandwiches.
So, dermatomysotistis, you may have cheated us out of our vegetables last year, but this year I will be eating freshly dug potatoes and having delicious salads.
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.
December 26, 2012 § 14 Comments
I’m not going to write a post about being ill or my bad leg today. No, this post is about my new Rudolph jumper and some memories it has invoked.
My brother, Andrew, whom I love and adore and with whom I shared a difficult and mad 70s childhood, is one of the worlds worst buyers of presents, ever. Some of his presents should go down in history for their tackiness, the teddy bear on a bike is one that springs to mind (I ended up giving it to the scouts for their jumble sale – isn’t that awful). But I have begged my brother to either let his wife, Bev, buy the presents (she is very good) or give the money to a charity on my behalf, or better still, don’t buy me any presents at all, I really am happy to just see him at Christmas, that is present enough for me (at this suggestion, he said I was being selfish, not allowing him to give me a ‘proper present’).
For several years this worked and Bev bought the presents and all was well. Then this year I woke up on Christmas morning to one of the worst presents anyone could have possibly bought me…a Rudolph jumper….ARGGGGGGGG
Now I know they are ‘in fashion’ but really, I don’t care about that, I actually screamed when I opened the package, then sat, face aghast for several seconds while it sank in, then realised, “Oh God, Andrew has bought the presents this year”.
Now me and my brother have a very close relationship, born out of particularly horrible shared experiences of Christmas. Let me give you an example. We were brought up in a very poor household, by quite old parents. Our mam and dad had a full set of grown up children by the time me and my brother were born and so by the time we were around and wondering if Santa was on his sleigh, they literally couldn’t be bothered. Coupled with that, they were of a generation that had lived through rationing and World War 2, so gift giving was not at the top of their agenda.
One year, our mother actually told little Andrew and Susan that they had a choice this Christmas, “food or presents, which will it be?”. Being sensible children and knowing our mother didn’t have that good a sense of humour, we chose the food – however, it still turned out to be egg and chips for Christmas lunch that year.
So out of this close relationship I am able to be quite frank and honest with my bother, so I called him up after the shock of Rudolph had worn off and I just had to tell him it was possibly the worst present he’d ever bought me and that is saying something. He got quite upset at this and I did feel a bit guilty, but I held my ground, otherwise god knows what might turn up next year. I said that under no circumstances would I be wearing it when I came round to his for Christmas dinner today and in fact I would only wear it under several other layers of clothes, to keep warm. He continued to be upset and I did feel pangs of guilt about being so honest about Rudolph and his merry nose.
That morning I continued to hum and har over that bloody jumper and as I got ready to go to my brothers for Christmas lunch the guilt took over and before I knew it, I was wearing the jumper and you know what…I think it actually quite suits me.
When I walked into my brothers house, he saw me wearing the jumper and clapped his hands with glee, his big ugly face lighting up, how I love him: My brother is one of the best things about my life.
Oh and you can see in the picture of me and Rudolph above, my moon face from the prednisolone has come down a bit, but its still quite puffy.
December 21, 2012 § 3 Comments
Dear Blog Readers,
just a post to wish you all a Merry end to the year; whether you celebrate that as Christmas, or the Winter Solstice (my favourite) or the Dongzhi Festival, or Pancha Ganapati or Al-Hijira (already begun) and Hunnukah (already done) whichever one you have chosen in life and I’m sure I’ve missed several out, sorry.
Whatever your religion or philosophy, whatever your gender, or the shade of your skin..I wish you the happiest of times now and always.
(And wouldnt it be a better world if none of the above mattered)
December 10, 2012 § 6 Comments
I’ve been putting off going to the dentist for ages. Well, I have had a good excuse, but I really had to bite the bullet (pun intended) and just go, as I’ve had a bit of tooth ache.
You’d think, after having gone through all those horrible invasive tests when I was diagnosed with dermatomyositis; Crying like a baby after the horrible muscle biopsy, having all my bits prodded and poked and various metal things inserted in various places, you’d think the dentist would hold no fear for me.
Well think again.
I hate going to the dentist, even though my actual dentist is lovely beyond duty and kind and sweet and caring.
I first met my lovely current dentist, after a particularly horrific experience at the dental hospital with an impacted wisdom tooth, she righted the wrongs, lets just leave it at that. Anyone reading this, who has had the misfortune to have an impacted wisdom tooth, will know that this is no laughing matter (more mouth references, I can’t help myself). In this case, not only was it impacted, but it was also infected. I can’t quite remember how I ended up at the dental hospital, but I had at one point, two students and their lecturer trying to saw their way into the tooth, hidden by some pesky bone which just wouldn’t budge (yes, it was like something from a horror film). Oh and I forgot to mention, the anaesthetic wouldn’t take, after many attempts and so this was pretty much done with no pain relief. At one point the dentist was virtually standing on top of me trying to extract that tooth. Dear god, it was horrific, yes worse than the muscle biopsy, maybe worse than childbirth, Im undecided on that, certainly up there with childbirth. I ended up sans wisdom tooth (some may argue, sans wisdom too) and I couldn’t eat solids for a week because my mouth was so swollen – there is an analogy there with childbirth and something else swollen and painful, but I’ll leave that to your imagination.
The above horror tale, may well be behind the whole fear of dentists thing. By the way, I also only have one child…
So any excuse not to go, is used and having been pretty ill for a long while now, has played nicely into my excuse list.
But I went today and now I have to have a old filling removed and replaced as it’s got decay starting around it, BOO HOO me! Not fair, I’ve had enough this year of being poked and prodded. Santa, why me, give me a break you rotten sod!
I know that it will be pretty painless and fine, but I still feel nervous about it. If you asked me if I wanted a muscle biopsy, or a filling removed and replaced, I’d choose the latter in a heartbeat that’s for sure. So bring it on dentist, I’m ready for a drilling.