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):
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 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.
December 5, 2012 § 11 Comments
The thing about dermatomyositis is that is can permanently damage muscles and that’s something I’ve been hoping wouldn’t happen to me. If you’ve been reading this blog, you’ll know I’ve got a ‘gammy’ leg – ‘gammy’ translating to a lot of pain in my left leg and associated swelling, when I do a bit too much exercise (by too much, we’re talking here of minute amounts of exercise, not climbing a mountain or anything).
So the other day I went out for a lovely lunch with my daughter, Elaine. We went to a suburb of Newcastle upon Tyne called Heaton, where there’s a few nice vegetarian and generally bohemian type cafes, over a fairly short distance.
In the first cafe we went to, called Sky Apple Cafe, we had a very delicious all day vegetarian Big Breakfast. It was such a lovely bright, crisp, blue sky, winter day that we decided that we would walk to another cafe, Heaton Perk, for cake and decaff coffee, the walk being about half a mile.
Now recently I’ve been building up my strength and stamina and I’ve been able to walk about half a mile (with a couple of rest stops) so, I was fairly confident getting to the the cafe for my cake. So, off we went, on the cold, crisp, bright day and made it, slowly, to Heaton Perk. Once ensconced, we talked about life and books and politics and how much I miss travelling. We ate gluten free lemon drizzle cake and drank steaming decaffeinated coffee and decided that life doesn’t get much better than this: Little pockets of happiness and cake.
Then we walked the half mile back to the car and off we went.
Doesn’t sound like much exercise does it. Well today my leg is swollen and very sore again. When I walk my knee buckles under me and the joint is very painful as well as the muscles around it. It’s so frustrating, not being able to even do a little walk without this happening. How on earth can I get back to where I was at this rate. However, I am utterly grateful Im not in a wheelchair like a lot of people with this disease.
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 19, 2012 § 19 Comments
I was started on 50mg a day of the corticosteroid, prednisolone when I was first diagnosed with dermatomyositis in early June of his year. Well of course, I can’t stay on that dose for too long because of side effects such as osteoporosis. So since around late August I’ve been tapering the dose and factoring in the steroid sparing drug, methotrexate. It has worked pretty well. My disease is in remission because of those drugs.
So here I am, nearly 6 months into taking prednisolone. It has had it’s ups and downs; It has gotten the disease under control, but it has made me look like an advert for moonpig.com with a big round moon face. I’ve put on over 2 stone in weight. It has given me stomach pains. I’ve got osteopenia in my hips. I’ve had heart palpitations and tachycardia because of the steroid. My sleep patterns have been adversely affected. At one point I was also borderline diabetic, but got that under control through dietary changes. My once excellent long vision, is now very blurred. I have lumps and bumps in the strangest of places. It has also left me prone to infections, which, so far, touch wood, Ive managed to avoid.
On the plus side, I’ve felt pretty happy. Steroids like prednisolone are mood elevators and for the past 6 months, considering I’ve had a pretty awful illness, I’ve been a happy, chirpy girl. Until now that is…
This week I’ve tapered down to 20 mg one day, 0 mg the next. Suddenly my mood isn’t so positive and the dark has set in. I feel lost and angry about my life and how it has turned out. I feel like I’m the worlds biggest underachiever. I’ve got to get out of this funk and think how fantastic it is that I’m now on an average of 10mg of prednisolone a day after being on 50 for so long. I’ve got to keep that positivity and remember how I felt when I thought that this disease might take me, but it hasn’t. It isn’t easy though, when you look in the mirror and you hardly recognise yourself from a year ago. How do those positive people, keep so positive?
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.