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Archive for October, 2012

I  received an appointment for my initial consultation to discuss the Stem Cell Therapy / Bone Marrow Transplant treatment option in the post this morning. It’s with Dr Akil, who is another Rheumatologist that specialises in Systemic Autoimmune disease, on November 28th. The appointment is at the Sheffield Hallamshire hospital over in Yorkshire, so is going to be quite a trek, but my dad has offered to come with me and my fiance, for support and to share the driving.

The most recent information sent by my own Rheumatologist was a lot more helpful in understanding the procedure itself and I feel like I’ve got my head round things a bit better now.  That doesn’t mean I’ve made a decision, but I’m more open to the idea of discussing it.  I took a break from reading too much into it, but now I have the appointment I’m going to have start looking at the information available online (related to the procedure itself, although mainly aimed at Leukemia patients). I’ll be doing this in small chunks again, so as not to get too bogged down and overwhelmed by it.

I think our main issue is still fitting this option into our longterm plans to have a family and this is something I want to discuss thoroughly. I’m also seeing another Rheumatologist who is now having input on my care – a Professor Moots at Aintree – on Novemeber 14th. He’s been a part of the decision to put me forward for the Stem Cell treatment, but I’m also going to ask about a previous suggestion of trying a combinaton of two biologic drugs; double check there are no trials or new drugs in the line up and possibly, what his opinion is on pregnancy and remission.

This last thing is something we have been thinking about in light of having to turn to the Stem Cell treatment one day, since the chemotherapy would leave me infertile. If there is a chance that pregnancy could result in some sort of remission, even only temporary, it may be worth pursuing. After that, there may be more options to consider before resorting to the Stem Cell treatment, but if not it, at least it wouldn’t seem quite the sledgehammer to our future family plans. That’s our thinking anyway, but obviously it would need the support of my doctors.

So there we go, that’s where things are up to right now. I have lots of thinking to do and questions to make a note of before both appointments.

Who knows where they will take me.

L

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I’ve posted about the dreaded ‘How are you?’ question a few times before but it is an issue that just keeps rearing its ugly head.  A question that most people with chronic illness have dreaded hearing at one time or another, if not all the time.

On Saturday we went to a house warming party – one of my best friends from university has moved back up North after living in London for a few years and having her closer by is definitely something to celebrate! It was more than I’d done for quite a while, but I figured I could handle it if I stayed sitting and luckily we were able to grab a spot on the sofa. For once, it wasn’t the physical side of things that I was worried about but the socialising.

Of course there were no problems with my friend and her husband, but although I knew most of the others, only on the distant terms of friends of a friend.  And at the moment I am not very good at small talk; it is hard to know what to say when your current life consists mainly of staying in the house all day, not working, not having exciting hobbies or nights out to talk about. In fact, the majority of things relevent to my life right now are quite scary – the prospect of needing Stem Cell Therapy / Bone Marrow Transplant / Chemotherapy etc. People don’t want to hear about that, to be dragged down into the negatives in others’ lives; so I start to panic when I sense that dreaded question on someone’s lips.

‘So how are you??’

*awkward pause*

Do I lie and say I’m fine, even though I’m obviously not and they may be told otherwise by someone else later? I’m thinking now that might have been easier. But me being me and all honesty instead said ‘I’m not doing so good at the moment…’

I was going to follow this up with a postive comment about our engagement, to change the subject away and stop me from sounding like a miserable party pooper, but I didn’t the chance.

Instead, halfway through my sentence, the person I was talking to hastily turned their back and blanked me completely. Now, I’ve had people look awkward, at a loss for things to say; had them change the subject and so on, but never have I had someone physically turn their back on me.  My fiance and I were both gobsmacked and I had to stop him from tapping them on the shoulder and saying something.

At first I kicked myself for giving the wrong response to the question, but then I thought no, I just said it as it was; the problem was their’s. If they couldn’t handle the answer, they shouldn’t have asked the question – even if they were just doing it out of politeness, since the outcome was anything but polite!  Most people know I have health problems, so they must realise that the question ‘how are you?’ is a loaded one. I would much rather they didn’t ask and stuck to talking to me about The X Factor, than ask when they obviously don’t care about the answer.

Maybe then I wouldn’t have to gage people’s reasons for asking, wouldn’t have to worry about tailoring my response to each individual and then maybe, maybe I wouldn’t dread hearing the question so much. Ugh.

Anyway, on a more positive note, I had a great time at the party and managed to stay until just after 10pm, which is late for me. Yes, I wished I could have stayed later and chatted away with everyone and maybe had a few drinks and gone home a bit tipsy. But this was a step up from being housebound and unable to move, so I was pretty pleased that I actually made it and didn’t have to let my friend down.

Oh and I think she liked the ‘Home Sweet Home’ cross stitch I made for her; the first I’ve managed to do this year I think.

So yay for being able to function, even if it is all the demon Prednisolone’s doing.

L

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This morning I received a letter from someone I used to work with.  A lovely letter but it made me feel sad all the same.  It made me realise that I’m really not going back.

It feels strange even calling it my ‘work’ now, when I haven’t actually been there for almost two years.  We are stuck in a bit of a quandry where I can’t resign because I’d lose entitlement to a certain financial benefit; yet they can’t end my contract because Still’s Disease is covered by the Disability Act and if they did I could make an issue of it – not a good advertisement for a top Special Educational Needs school.

The decision we have made recently is to go for Ill Health Retirement, which means an independant doctor needs to agree that I will be unfit for work for the next X amount of years.  My employers think this should be straightforward, but we have played it quite positively up until now, hoping against hope that I would one day be well enough to return. That could go against me now, even though my Rheumatologist’s report will stress how dire my circumstances have become.  As sad as I am to see the job go, I just want it all tied up now. I’m tired of the ‘disciplinary’ meetings and reviews; the phonecalls and letters, of just having it lingering in the background all the time – guilt.

The letter was from one of the few people that I’ll miss and I’m glad that he wrote, because I made the mistake of isolating myself from them; hiding myself away, embarrassed by the difference my illness made to me from the person I was when ‘well’ and working. I kept telling myself I’d go and see them when I was feeling up to it, but up to it never happened and now I feel bad that two years has passed. This letter has spurred me on to write to the ones I will miss and hopefully we will be able to keep in touch away from work. Maybe one day I’ll even feel strong enough to go into the place that I used to love so much, a space that was once mine.

And hopefully I’ll find another job one day, one that I’ll enjoy just as much and be able to give my all to. Because, despite the retirement label, I can work again in the future if I’m declared fit and that is my goal.

L

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So I was laid up all yesterday with a nasty stomach bug. I can usually carry on and work around these things, but this one stopped me in my tracks; in fact, I didn’t actually get out of my pyjamas and pretty much slept through the whole day, feeling weak, shaky and fuzzy whenever I did wake.  My stomach started to settle down a bit late afternoon but then the joint pain kicked in, excrucatingly so in my right knee and hip and my left shoulder. Of course, since I’d puked after trying to take my morning medication, I was probably running med-free and without my usual Morphine for pain-relief. Yowzer.

What do you do if you literally can’t stomach your meds? Even the 50mg Prednisolone probably didn’t get into my system but I didn’t want to risk taking more.  The rest I took again at night, as always, and managed to keep them down so no longterm harm there. But I’m never sure what the protocol is for medication and vomiting.

I’m feeling much better today and have even managed some lunch, so hopefully it was just a 24 hour thing. Now I’m just dealing with an extra bit of pain and stiffness from missing the meds and lying in bed all day. I should hopefully be able to get back on top of things without my joints flaring any further though I hope and at least I’ve caught up on all that sleep I was missing!

On a sort of related note, the thing that kept going through my head when I was lying on the bathroom floor, not knowing what end was going to protest next (sorry); was could I cope with that for however long a course of chemo would effect me? Not to mention the chemo sickness being ten times worse, at least. These are the things it is hard to think about choosing to put my body through – because once I decide and go ahead, there’s no way to stop it all no matter how tough it gets.

How do I know I’m strong enough?

L

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Prednisolone and Diabetes

There isn’t much to report at the moment. Things are pretty stable thanks to the high-dose of steroids and, although I do still have pain, it is manageable and I am able to function around the house. I’m hoping that we have managed to prevent any major joint flare from developing, although I have been without any biologic drugs for nearly two months now so I guess I’m not safe yet.

I have had a bit of an issue with the 50mg Prednisolone though – I happened to comment on Twitter that I’d barely slept thanks to needing to pee seven times in one night. I thought it was just water retention, but someone pointed out the risk of Steroid-Induced Diabetes at such high doses, something that hadn’t even crossed my mind. A good example of how Social Media can be a useful tool in raising awareness and highlighting such issues.

When I looked into this condition further, I found out that around 60% of people taking 40mg or more, for more than two days, experience some level of hyperglycemia and that I had all the classic symptoms:

  • Longterm, high doses of steroids such as Prednisolone.
  • Thirst, drinking more water and passing more urine than usual.
  • A change in eyesight, particularly an inability to focus properly.
  • Oral or Genital thrush.
  • Poor Healing
  • Fatigue
  • Relatives with Diabetes.

I’d noticed my eyes were blurry a while back and thought nothing of it; have been fighting oral and esophagal thrush since before my hospital admission (treated with Nystatin and Flucanazole); then my Dad is Diabetic too, so I ticked all the boxes. I thought I’d better check it out with my GP just in case and was able to speak to him on the phone. He said there is a good chance it could be Steroid-Induced Diabetes and that he would check my blood sugar next time I saw him. In the meantime, he advised me to be ‘sensible’ with sugars and saturated fats.  I had a look online and found this dietry advice from the NHS.

But how does this happen and why is it important? Here’s a sciencey bit:

Steroids mimic a hormone called Cortisol, which increases blood pressure and levels of Glucose in our blood. Insulin usually counteracts this, but the higher the dose of Prednisolone and the longer you take it for, the more you become resistant to the effects of insulin, allowing blood glucose level to rise higher and remain that high for longer. This is called hyperglycemia. If left uncontrolled over a long period of time, hyperglycemia can cause damage to blood vessels in the kidneys, heart, eyes, as well as neurological damage.

So diagnosis and control are pretty important. I was supposed to get my blood sugar tested the other day but wasn’t able to make it into the surgery; I’m just waiting to fit it in again, which I will, very soon I promise. I’ve really been watching my sugar intake though and have noticed some improvement in the symptoms already, including less nocturnal bathroom trips, so that’s a good sign. I have also been sweating less – another symptom that can be attributed to Hyperglycemia, but one that I’d obviously blamed on the Still’s Disease!

From what I’ve read on the subject and what my GP told me, it is simply a case of controlling sugar levels through your diet rather than needing any oral medication or insulin shots, although I did come across a couple of extreme cases.  It is probably a sensible thing to keep an eye on when taking steroids anyway, what with the temptation to give into the steroid munchies. Ironic that they make you crave the stuff that could do so much harm.

The good news is that if you do develop Steroid Induced Diabetes, it is usually reversible once you reduce down from the high dose of steroid, although some do go on to develop Type-2 Diabetes.

I guess it’s one more thing I can add to my Love-Hate list for Prednisolone.

L

Further Reading:

How Steroids Could Give You Diabetes (Daily Mail)

Diabetes Guide: Steroid-Induced Diabetes  (Johns Hopkins)

What is Steroid Induced Diabetes? (Diabetes UK)

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Two posts in one day.

But I HAD to share this video of my Still’s buddy Kirsten, author of the NotStandingStillsDisease blog, talking about her experiences of Still’s Disease on behalf of the Arthritis Foundation, at an event in America. Kirsten is constantly trying to raise awareness about Still’s Disease and I think you’d agree she makes an amazing public speaker, a skill I would love to have.

Like a lot of us, Kirsten has had a rough ride with Still’s Disease, but she never loses her sense of humour and is always thinking about the effect of the disease on others too.

The video says it all really. Watch it, Save it, Share it and hopefully we can get more recognition for this terrible disease and maybe, one day, even a cure.

L

Ps. Forgot to say, I get a mention on there too!

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Things all felt a bit too much for me on Friday; I guess reading about the suggested Stem Cell Therapy affected me more than I expected.  So I decided to give the whole thing a rest over the weekend – no reading, or discussing it; in fact, it was a banned subject. I needed some ‘me’ time, some ‘normal’ time, just doing ‘stuff’, which is what I did and I’m pleased to say it worked and I felt much less overwhelmed almost immediately.

On Saturday we went shopping to the retail parks near us. It’s mainly my fiance that does the shopping, while I go along for a ride to give me some fresh air and a change of scenery. I do have a little wander in some of the shops when I can; I love looking at the craft supplies in The Range and picking out cards in the gift shops and yesterday I even made my way round the Supermarket. The good thing with retail parks is I know that the car is close by if I find myself struggling and in need of a rest. I always take a blanket (like a little old grandma!) and sit under that, people watching, until I’m ready to go again. We treated ourselves to a takeaway in the evening, since neither of us was up to cooking, and then settled down to watch The X Factor.

Today, I was a little bit disappointed that I had to let my fiance go to a Christening on his own as I was exhausted from the previous day. It was mainly the fact that I feel we’re missing out on doing these things as a couple that upset me but have to believe it isn’t forever. Staying home was the right thing to do as I didn’t have the best of days. My fevers have been quite bad and I caught sight of myself in the mirror at one point and gave myself a fright, so probably would have scared the kids. Instead, I made the most of this ‘steroid high’ that is keeping any major joint issues at bay and had a go at baking. Just a very quick flapjack recipe, but it felt good going through the motions of measuring and melting and mixing. Soothing really. Plus, there is always that sense of achievement when you have a finished product to share at the end, especially one that tastes good.

So I feel much more relaxed now but I need to make sure it lasts. I will have to face the reading and the decisions I need to make but I also need to know to hold back if it’s getting too much so I don’t get in a state again. I guess it doesn’t help that I am spending so much time on my own during the day; it’s so easy to let emotions run away with you.

I’m going to try and read a little bit more tomorrow, but maybe just one section rather than pages. And I’m going to have something nice lined up afterwards to take my mind off it again. No dwelling on it for the rest of the day – easier said than done but I need to try it.

Like everything, it’s all about balance.

L

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Feeling Overwhelmed

I’m not feeling like myself today and this post probably isn’t going to be like my usual posts either.

Most of the time, I feel able to fight this disease and everything it throws at me. I try to think positively, to make the best of what I’ve got, to look forward to a future that is not ideal but is mine. Most of the time, I feel like I have managed to adjust to living with a chronic illness; to the highs and lows of the rollercoaster and the hurdles it throws in my way.  Most of the time, I can honestly say I am happy too.

Today is not one of those times. Today I feel like I’m carrying a huge weight right next to my heart and my mind is racing. I feel alienated from everything that is going on around me. I’m emotional and restless, unsure what the hell to do with myself. I’m not even confident which way is up right now.

I guess the cause of all this is being faced with Chemotherapy and Stem Cell Therapy / Bone Marrow Transplant. It’s nearly two weeks since it was first mentioned and I held it together pretty well for a while, but suddenly I feel overwhelmed. I’ve been trying to get through the reading my Rheumatologist sent me by reading only a little bit at a time; firstly, because I want to understand it but also, because it is such a difficult read emotionally. Which would explain why each time I have read some, that weight in my chest has got a little heavier. Yet, it needs to be done. I need to at least have the knowledge to help me make a decision, so what choice do I have?

I honestly can’t believe that it has come to this and really don’t know how I am going to make the decision. There are so many related issues and things to consider. There isn’t just me now, there’s my fiance’s future in the balance too. We still haven’t given up on having a family one day, but then how does that fit it with this? Chemotherapy will probably make me infertile and so we’d have to look into fertility treatment to preserve embryos beforehand and then face the horrendous process of IVF afterwards. Or there’s a small chance we’d be advised to try naturally first, but wouldn’t that make the decision to go ahead even more difficult as a mother? What if something happened to me? People do die from this treatment.  Then I’m supposed to be getting married in a couple of years time and suddenly I’m scared of arranging anything. I want to travel, but do I do that now ‘just in case’?

My thoughts go on and on in circles like this, with more and more questions arising with each point.

It may sound like I’m focussing on the morbid but those are the things that are hard to get my head round and the risks feel very real to me right now. I want to talk to somebody about how I feel but I’m actually worried about scaring my family, my friends and especially my fiance too much. I can’t even bring myself to discuss what I’ve read so far with him because the fear in his eyes at the mere mention of it is too much. I’ve asked my GP if there is a counsellor or anything I can access but he says this is ‘too big’ for them, that the appropriate counselling will be offered to me at Sheffield. But I kinda feel like I need someone now.

I know things will be put into place in due course and that I might be getting ahead of myself, but from the moment this option was voiced my mind has been racing. How can it not? It is very difficult to think about anything else right now.

I also know that the outcome of this procedure could be very positive; don’t worry, I haven’t forgotten that, it’s just not why I’m posting today.

I’m posting because I’m tired of being brave. I’m scared and for the first time I feel very, very alone.

L

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After emailing my Rheumatologist with an update yesterday, he replied to say that the referral to start the Stem Cell Therapy and Bone Marrow Transplant procedure had gone through.

Yikes. That conversation was real then.

I’m not commited to anything at this point, nor am I even close to making a decision about it; I have simply agreed to hear about what the procedure entails as a treatment option for Still’s Disease.  It has been agreed that we have exhausted all other options and the medications are just not working for me. There was a suggestion that maybe I could try a combination of biologics, which is unchartered territory but perhaps less risky than the SC/BMT. I need to revisit this idea with him at some point as I forgot to ask about it during our last conversation; the focus becoming SC/BMT.

There is only one hospital in the North of England that carries out the procedure and that is in Sheffield, about 90 miles away from home. That’s going to make it tough spending any long amount of time there. The funny thing is, that the only Haematologist to carry out the procedure also happens to be my Rheumatologist’s brother, which makes me feel I will be in safe hands. There shouldn’t be any communication issues between the two at least!

The first step is to see a Rheumatologist called Dr Akil at Sheffield Hospital. My Rheumy thinks it’ll be about four weeks before I get an appointment, but I wonder if even that is optimistic. It doesn’t sound very long and I’m kinda nervous about seeing a new doctor after all these years. I’m wondering if he will have access to my huge volume of notes, or if he will want to do some tests and investigations himself.

I was also sent some information about the procedure, although it is so rare that he hasn’t been able to find any patient-based info. Instead, it is a 21 page article full of medical jargon. I couldn’t face reading it straight away, it was enough to have it and realise that all this is very real. Today though, I decided there was no point sticking my head in the sand and that I needed to face it head on. It is going to be a massive decision and so I’m going to need as much information as possible to make it properly, plus enough time to process and take it all in and to address any questions I have about it all. Better to start now then.

And start I did, but after two and a half hours of reading I am only six pages in and have decided to leave it there for the day. Because I want to fully understand what’s in front of me, I’m constantly checking up on word meanings and acronyms and making notes in a separate document. It’s like being at school again, which would be great if it wasn’t such a personally daunting subject. My GP, (who popped round earlier to see how I am getting on since leaving hospital), has kindly offered to interpret anything I don’t understand though at least.

So what have I learnt so far?

  • Only 3000 of these procedures have been carried out for people with autoimmune disease since 1995 – worldwide; about 175 a year.
  • It will be an ‘Autologous’ Stem Cell Transplant, which means harvesting and replacing my own cells.
  • Remission is possible, both longterm and temporary; if temporary, returning symptoms tend to be easier to treat.
  • It is also possible that there will be no change and there is, of course, risk of death.
  • With Still’s Disease, the main risk of death comes from Macrophage Activation Syndrome, which can occur at either stage of the procedure. This is something I have already suffered from, I discovered recently.
  • My Still’s medication would be stopped as early as possible and I would have to rely on Steroids to prevent any further flaring.
  • I would need chemotherapy – I guess that might seem obvious but seeing it in writing makes it real.

And that’s about as far as I’ve got really, wading through all the medical jargon. I’ll read some more tomorrow and keep posting about it here. Since it is such a rare procedure, I think it is a good idea to keep a record of it for others that may need it in the future, even if I don’t go the whole way. Because it doesn’t just stop at understanding the procedure itself, or even coming to terms with the risks – it’s the whole impact on my life and future, the future I share with my fiance and any plans that we might have to start a family etc.

So much to think about,

L

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I spent the weekend being looked after by my Mum at her house while my Fiance was working. It was lovely to spend some time with her but, of course, sad too after the loss of Lucy. It did give us chance to talk and grieve though and I feel more at peace now.

I did something really stupid on Saturday. After sixteen years of taking Prednisolone, I somehow forgot to take my 50mg dose in the morning and soon started feeling grottier than I had been. Thankfully, I realised what I’d done some time in the afternoon and took them straight away, but boy did I suffer that night. The pain and fevers crept right back in and I was worried I’d lose a grip on all the progress I’d been making.

I woke up feeling okayish yesterday morning and the day seemed a reasonable day in general. This morning, however, I have woken up with excruciating pain in the whole of my right leg – from hip to toes. I had felt it niggling away in the night, but when I moved the leg first thing it was like waking a beast. There are dull pains, sharp pains, spasms, waves and other sensations running through the joints and the bones. A hefty dose of Oramorph has taken the edge off a little (I’m not tempted to swear now at least!) and I can have some more soon, but I am a bit concerned what this means.

You see, the pattern with my Still’s Disease is that I get a Systemic flare first, with the fevers, rash and random illness (Pericarditis, Neutropenia, Pleural Effusion to name a few); then a few weeks later the Joint flare hits big time. I was hoping the considerable dose of Prednisolone would keep things at bay this time, but this pain does not bode well. Plus the weird bubbling sensations I’m getting could well be the start of some fluid accumulation. I’m trying not to worry about things before they happen, but after things got so bad at the beginning of the year it is hard not to. For now, I’m resting up and back to using a stick since the leg doesn’t seem to want to bear any weight.

Book Recommendation: Another Alice by Alice Peterson

For the past few days I have been reading an autobiography of a woman who was diagnosed with Rheumatoid Arthritis at the age of 18ish and thought I’d share it with you. There are some differences between life with RA and Still’s Disease, but I still felt that I could relate to a lot of her experiences and found it an interesting read – one of those that makes you want to shout ‘I know exactly what you mean!’ She had a tough time of it, especially as she was a budding professional tennis player when symptoms started, yet I didn’t find it depressing just realistic. There is a section on her tennis career at the start; but, if that doesn’t interest you, it is quite easy to skip ahead to the RA story as chapters have obvious titles and you don’t miss anything from doing so. Equally, bear with that section if you can; I did and felt it summed up that sense of loss that comes with initial diagnosis, especially as a young person.

This could also be a good book to share with friends and family that want to try and understand what it is like to go through life with an illness like RA or Still’s. She explains her pain, her alienation and how she adapted and got over her feelings of shame/embarassment towards such an illness really well.

Give it a go and see what you think,

L

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