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 17, 2012 § 5 Comments
Yesterday I went to this fund raising lunch to support research into depression. The guest speaker was a relatively prominent member of a national football code. His talk was interesting, a good speaker and personable enough but to be honest the content was pretty shallow. While I have no doubt he suffered from a depressive episode his recovery sounded as simple as waking up one day, deciding not to be depressed, going for a jog around the block, changing his diet and getting back on track with his professional football career. Thankfully for him, he only had to see a psychologist 4 or 5 times and he didn’t require any medication. Of course the audience ( most of it) found his talk ‘inspiring’ and his honesty in ‘outing’ his illness similarly inspirational.
Perhaps I am a sceptic but having suffered multiple episodes of depression throughout my life (including years of medication), two incidents of anorexia nervosa (including a three month hospitalisation), domestic violence/abuse at the hands of a partner, several failed relationships, at least two failed businesses, significant financial loss, cancer and a daughter who herself suffers from mental illness (depression and anxiety) – I couldn’t help but think that neither he nor the audience had any real insight into the reality of depression and mental illness more generally. I know that people look to celebrities as sort of role models including as evidence of strength against adversity, but there are so many more of us that really experience very serious life challenges and who manage to get through them pretty much by ourselves and with our families, whose efforts go unnoticed. This is not to say that I think we all need this kind of celebrity attention, but that there are many of us who should simply give ourselves more credit for facing and overcoming the challenges we face – sometimes on a daily basis. I say this because I know there are many people who read this blog who deserve that acknowledgment and who should be proud of the simple achievements they have made. You guys are the real celebrities. Cheers to you !!!!
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.
November 8, 2012 § 18 Comments
I too have a most wonderful doggie called, Ella. Ella is beautiful and clever and funny and is one of my best friends. But she is also a poorly dog and is called the Miracle dog by our local vets for good reason.
In 2008 Ella was diagnosed with diabetes. She was 9 years old then and was starting to go blind because of cataracts caused by the disease. It was awful to watch that wonderful dog, who had stood by my side through some awful emotional times over those 9 years and had been my stalwart friend, being unable to climb stairs or manoeuvre through rooms easily. So we took her to a specialist doctor, in Cumbria, who removed the cataracts and gave her back her sight, she became a pup again and was so happy to be able to see again: A dog may have an amazing sense of smell but trust me, they need their sight too.
We were able to get Ella’s diabetes stabilised and for a while she was her old self. Then one day she became very ill. She started getting bruises all over and her normally, beautiful deep pink belly went ashen white. We again had a visit to our wonderful vets. This problem was a difficult one to diagnose and at first they thought it was poisoning, perhaps rat poisoning. Ella was put on vitamin K therapy, which entailed being given a VERY large vitamin K tablet every 6 hours, including through the night. Anyone reading this who has a dog, will know that giving dogs big tablets, isn’t easy, it’s a massive pain in the bum, especially at 4am. Still, it seemed to work and she became a little better. Then about 3 weeks later she collapsed. Seeing a dog faint is a very shocking experience and I was horrified at how badly I responded, I didn’t know what to do and panicked. Thankfully Steve has first aid training and he resuscitated her. We rushed her to the vets and she was kept in for tests and observation. To cut a long story short, Ella was diagnosed with an autoimmune condition known as thrombocytopenia. This condition is treated with the same drugs as dermatomyositis, so me and Ella have much in common.
Since then Ella has gone into remission, but then the disease came back again recently, so now, again, she is back on prednisolone with her mumsie. She has also since developed a heart conditions and pancreatitis.
To look at her, you’d think there was nothing wrong with her. She continues to do her dog jobs which mainly involve guarding the house – she’s actually a bit rubbish at it (don’t tell her I said that): Once she was sitting guarding the house beside an open sliding door and a mouse ran in the house right past her – she didn’t even notice. She is 14 next March and that is around the limit of life for her breed (bolognaise) but yet she loves life and she is a firm member of the pack, only second to me – I’m top dog, she is second in command, followed closely by her toy, Suckling Pig and finally bottom of the pack is Steve (completely ruled by Ella).
The vets call her the miracle dog and she is, she has cheated death on many occasions and is an inspiration to me everyday. I love her so incredibly much and I know that she won’t be around for much longer and that feels like a terrible pain in my heart.
Ella has many names, Ella, Minstrel, Pushkin, Lambskin, DD, Little D, Chi chi L’amour, Monster Mash, but she is and always will be, my darling, inspiring dog.
Here’s a video of Ella bullying Steve:
November 7, 2012 § 2 Comments
Well this week was chemo number six and I hope it was the last one. It has been a tough couple of weeks and I have to say that this week I have felt totally depleted – I think the expression I used to some friends was feeling like a truck had literally hit me. While I wanted to be excited about getting through the chemo I didn’t really have the energy – maybe in a couple of weeks when by body starts to get over some of the drugs. I have a PET scan scheduled for the first week of December which I am hoping will be positive. I think it will be – I feel pretty positive in myself that the outcome will be OK, though sometimes I dare not get to confident, just in case. Over the next month I still need to have a two doses of the Rituximab but am told that it doesn’t have the same side effects as the deadly chemo drugs.
At this stage my skin is a bit splotchy, I still have the metallic taste, feel exceptionally tired and while my mouth is not too bad at the moment recent experience is that is gets bad the second week after chemo. So that’s what I am anticipating for next week.
I still know there is a way to go – and thinking about having to get back on my feet and finding a job is pretty daunting at present. That is probably what worries me the most. But I have a goal – to meet Sus in Rome around September next year when we are both feeling well and able to reflect on what a big year 2012 has been and how we faced the challenges, the demons and beat them all. It is more than something just to look forward to – it will be a significant milestone for us both and we are both determined to get well so we can celebrate our respective achievements. I have no doubt we will have a marvellous time and lots and lots of laughs – that in itself is worth work towards.
For the moment let’s just see what the next week brings.