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):
October 19, 2012 § 2 Comments
I went to the specialist dermatomyositis clinic at the Royal Victoria Infirmary the other day. I am incredibly lucky to have a specialist clinic, so close to where I live for such a rare disease. It is probably because my neurologist has a special interest in myositis: Whatever, I feel quite lucky.
And with dermatomyo-shite-is you get two for the price of one, so I see both a neurologist and a dermatologist. The dermatologist checks out my skin for any signs that the derma part of the disease, i.e. the rash, is causing any trouble. Fortunately for me it is almost gone, apart from some faint traces of it still visible on my hands: Apparently, the hand rash is usually the last to go.
The neurologist tests my muscle strength and also decides upon any changes to current treatment. And it’s the neurologist (bless his cottons) that has decided to taper the prednisolone, so I now have, 30mg one day and 0mg the next.
I actually shouted “YIKESY!!!”, when he announced I would be taking 0mg every other day, at which he exclaimed, “why yikesy?” To which I said “because it’s scary…MAN!”.
Anyway, Ive been on this regime for a few days and I can report that I seem to be getting a delayed effect. On the day I take 0mg prednisolone I am actually not too bad, but the next day, urgh, Im incredibly tired, have more significant pain and feel nauseated – pretty bad when my sister in law made the most amazing vegetarian, gluten free, trifle for us, which I have named ‘The Trifle of Delight’ as it looks so good.
However, I will persevere. It’s not like the last time where I was incredibly ill and had to go back up to the higher dose, that must be a sign I’m improving too. The good thing about this dosage is that it is under the magic number of 20mg a day (averaged) so I’m hopeful some of the side effects of the steroid will abate, in fact the neurologist said some of them should, not all, but some – let’s hope that means bye bye Moon Face.
October 6, 2012 § 18 Comments
When my daughter was born and until she was about two and a half, she hardly slept. Well, she did, but it felt like she hardly slept. She definitely woke at least four times a night. I was exhausted all the time, it was horrific and I was desperate for rest.
I am now experiencing my second bout of extreme exhaustion, this time through illness and not children. Since before I was diagnosed, probably around May of this year, I’ve been experiencing, extreme, all encompassing tiredness. At one point I was sleeping between 14-18 hours a day. The tiredness has decreased with my treatment for dermatomyositis, but it hasn’t abated: And this week, I’ve been particularly bad.
“Oh, but you’ve got enough energy to write a blog post, etc.”. I hear you say. True, I am able to sit and slowly type, but only after a long afternoon sleep. I suppose at least I can have an afternoon sleep, you can’t, often with small children around.
My neurologist said to me the other week when I saw him, that I must not do too much, because the exhaustion you will feel will set you back. He’s right, I’ve been a fool and done way too much this week. I have been working (from home, part time, but still it’s very tiring). I spent time with my daughter and grandchildren (such wonderful, happy times, but small children are so tiring) and I had friends stay over for a few nights (good friends who did my garden and entertained me – I did ask them to wear clown suits too and sing, but they refused, tch (selfish friends).
The exhaustion you get with diseases like this is all encompassing, I’ve never experienced an intense tiredness like it – it is actually worse than the tiredness of motherhood.
I, like many others, try to fight it. I am sick and tired of having this disease control my movements, so I try to pretend to myself and others Im not so bad and then I crash, literally, its like a sudden crash where you feel physically sick with the tiredness and HAVE to lie down and sleep.
I’m still sleeping about an hour during the day at the best of times anyway, but when the crash comes, wooo, it’s sleep as much as possible.
So, carers and friends and family of the ‘diseased’, if one of us sick people say we are tired and aren’t up to, what must seem to you like the most trivial of things, such as a phone call, it’s not that we don’t care, or are being flippant about our friendship, etc. it’s because we are really, really unable to do it.
(Well unless i just can’t be arsed and you’re getting on my nerves this week – JOKING!!!!) I LOVE you all!
September 29, 2012 § 2 Comments
Friends and family kept going on saying I should get one. But I kept resisting because it just seemed so final, so accepting of the disease’s badness. In the end, I was at a small family gathering and my sister in law’s, mother, had a rather dapper one with her, so I ‘had a go’ and actually it was pretty good. It was like something to lean on when you’re tired: Not a bad thing at all. In fact, I felt kind of cool, like a female version of Steed from the Avengers (although he used a brolly rather the a stick).
So, I bit the bullet and got one. It’s very cool, it has silver spiral galaxies on it.
I’m going to use it and not be embarrassed, or feel ‘old’. I’ll not use it all the time, just when I really need a bit of support.
Also, it has a useful, dual use. I can use it to whack Steve with when I need a glass of water, or a slice of toast, etc.
“whackkkkk! Steve I need a drink”
“whackkkk! Steve get me a slice of toast”
So it is a very useful thing indeed.
Oh and I’ve also found it’s good for poking the dog when she makes a smell, so she moves away from within my nose range.
My whacking stick (me looking a bit grumpy and fat of face (more about steroid ‘moon face’ fun in another post):
September 18, 2012 § 7 Comments
I’m off to hospital tomorrow to see my dermatologist and neurologist (two for the price of one with dermatomyositis). During the discussions about where I’m at, I need to talk about using IVIG (intravenous immunoglobulin) as an alternative to methotrexate. This was brought up with me last week during my stay in hospital as I’m having quite a few side effects from the steroids and methotrexate and I suppose, they are hoping that IVIG will be a quicker and more effective control for the disease.
But…I just feel a but ‘funny’ about the whole thing. I think it might be a combination of factors, one of which being, that each bottle of immunoglobulin is made from the antibodies of 20,000 people. Now…I don’t know about you, but that sort of freaks me out. The thought of 20,000 other persons, ‘little bits’, floating about inside me feels just weird. Rationally, I know I’m being silly. Im a trained scientist for gods’* sake! But it feels weird, I’m telling you: A little bit yeurgh.
Then there’s that damned cannula. Please no more needles and cannulas!
Last week when they took that awful thing out, I bleed for ages, all over the place. My trousers were covered in blood.
Oh, but funny story. I had put those bloody trousers in my suitcase to come home and when I got back and opened the suitcase, the dog immediately jumped in and went into a state of crazed madness dragging the blood stained trousers out of the bag, shaking them and trying to lick the blood off: You’ve got to love dogs for their carefree attitude towards personal cleanliness.
Since taking my weekly Methotrexate on Sunday evening, I have been quite poorly. Nauseated, diarrhoea, weakness and extreme tiredness, headaches and any pain seems to be amplified. IVIG doesn’t come without side effects and they seem to be similar to those caused by methotrexate. I suppose the difference is that the treatment with IVIG is over a shorter period. If I stick with methotrexate we are talking at least another 2 years of taking the drug.
So, I am left with the question, IVIG or not IVIG?
I’ll let you know after tomorrows meeting…
* I purposely have used a small g and the apostrophe in this place, so as not to offend christians and to take into account the fact that some religions have multiple gods.
September 12, 2012 § 16 Comments
The swellings in my neck and throat area, aka the marshmallows, have exacted their revenge and put me in hospital: Thanks for that, light, fluffy, glucose laden sweet , masquerading as some weird anatomical anomaly.
I have to admit to feeling extremely sorry for myself at this moment in time.
I am sitting in a hospital in Newcastle upon Tyne, the RVI. It’s a very nice hospital, with lovely staff, but it’s not home.
Before this whole dermatomyo-shite-is episode I had very little experience of hospitals – they were for those sad, sorry ill people. You know, those people with ‘health problems’ of which I wasn’t one. Since dermatomyositis took over my life, hospitals are part of my rich circle of experience. The smell of them is faintly reassuring. Walking down the corridor feels comfortable. I instantly took to my bed, on which I am now typing this post and settled in.
But it’s still not home. I want to be in my own bed, with my stuff around me.
But at least I am being checked out and looked after. The NHS at its best. I came into the ward and within an hour I’d had a CT scan and thorough body exam by two neurologists. The CT scan results have not been very helpful and I have to now have an ultrasound. But it doesn’t look like lymph nodes, which is good, as I was worried about non Hodgkins which has an association with dermatomyositis (be something if I ended up with the same illness as Suz wouldn’t it).
So now I wait for Ear, Nose and Throat to check me out to see if they have any ideas what the lumps are. I’m a medical mystery. I wish I wasn’t.
Oh and I HATE canullas, hate them, loath them. And I have to keep this one in overnight, arggggggg.
Here it is, if I have to suffer it, you may as well see it, in all its bloody glory (or is that gory):
I’ll update you on the marshmallow mystery once I know what’s going on. If only Scooby Doo was here.
September 8, 2012 § 18 Comments
Arse: The thing you sit on, also known vicariously as (in English, please insert other language versions as appropriate) posterior, bottom, bum and in North America…’fanny’. Note… Americans, some advise, never use the word ‘fanny’ when in the UK to describe an arse, because it means something completely different!
Knickers: Under garments worn by women to cover their arse
So there I was just finished showering and I tried to pull my knickers on and they didn’t fit me! My ginormous fat arse rejected them. It may be time for a pair of elasticated ‘granny knickers’.
I can put up with the pain, cope with the exhaustion, ignore the rash, deal with the blurred vision and so on, but putting on weight…nooooooo!!!!!!!!
It’s those damned steroids again. I’ve put on at least 14Lbs (a stone, or 6.35 kilos) in weight in the last month and I’m now at the point where I’m too scared to go on the scales, so who knows how much I’ve really put on.
Thing is, I’ve always made sure I’ve stayed around the same size. I’m an average female, so my weight does fluctuate, but only a little. This, however, is the heaviest I’ve ever been in my life and I do not like it, not at all.
I love clothes. I love them so much, it’s a hobby and a passion. I’ve got 2 wardrobes full of clothes and an overflow wardrobe and a rail with my oldest (true vintage now) items.
I love to wear them, touch them, have them. I love the fabric, I love the design. Now hardly any of them fit me and I’m extremely upset about it.
But I don’t want to go out and buy new clothes, because I feel fat and it just puts me off. My belly sits there looking up at me and laughing. My double chin, on my moonpig.com steroid face hangs down, mockingly. It’s horrible, this disease has taken my strength and now it’s removed my clothes (metaphorically…).
However, looking on the bright side, I could give Kim Kardashian a run for her money in the booty department and my swollen face does mean I have no wrinkles at all. So it’s not all bad.
Hmm in fact thinking about it, I prefer to think of myself as steroid induced bootylicious.
P.S. Sightings of my arse from space are grossly exaggerated!