Tuesday, November 17, 2009

Let's get technical.

I have to admit the terrain over the last 12 months have been challenging to say the least but I have come to a decision. It has been a long and painful one where plenty of blood and tears have been shed on the battle field but I am happy with my decision. If mr lupus is going to continue to be such a 'humongous' part of my life it was time he went to work. So I have decided that instead of allowing mr lupus to control my life I am going to use him to improve my life and the life of others.

I'm not sure exactly what that means yet but I do know that just the thought of it has made the days seem brighter. To this end we have a new look www.laughingwithmrlupus.com and if you are a follower, subscriber or just an interested party I urge you to go over and check it out and make sure you subscribe or resubscribe as the old links will no longer work.

I look forward to engaging with you and with you accompanying me on my journey.

Here's to a relatively pain free experience.

Sunday, May 10, 2009

mr lupus as a new home!

Laughing with mr lupus has moved to a new home. Check out the new look website www.laughingwithmrlupus.com.

I look forward to continuing to share with you.


World lupus day!

Today the whole world are joining together so we can make a ripple across the globe. It feels as though we should be observing a 1-minute silence or something like that in anticipation of his death (I’m referring to mr lupus of course). Yes that’s exactly what I want to do, so let’s do it!

Lupus pause

For the next minute or so, I want you to stop what you are doing and dream of a time when lupus will be a thing of the past, a time when men and women, young and old, black and white will not be subjected to the antics of mr lupus. A time when people like you and me, our families and friends, will feel free again to be and do all the things they want to whenever they want to. (This reminds me of Martin Luther King and the I have a Dream speech. Watch this space I may just write my own)

Okay, I realise that this may take a little longer than 1 minute so take whatever time you need and then get a glass of whatever your favourite tipple is (mine is sparkling mineral water with a slice of lemon) and join me in raising your glass in honour of the death of mr lupus.
For more information about ‘World lupus Day’ visit http://www.worldlupusday.org/

Monday, April 06, 2009

Another mr lupus production!

I’m sure this whole lymph node thing is a mr lupus production.

But sitting around waiting for something to happen or not is no fun at all and is almost worst than the pain itself but if it was anything serious they would have seen it by now wouldn’t they?
I am convinced that mr lupus clearly knows that there is nothing seriously wrong so to keep me occupied I now have another lump in the very area of the biopsy which we are not yet able to identify.

mr lupus really seems to be on a crusade this year. I have decided that it is a bit like being on a detox where all of the crap needs to come out before you can look and feel healthier.

So there you have it I am on a ‘lupus detox’, which means that when I come out of the other side I will be free from mr lupus and his antics.

Well that’s my theory and I am sticking to it

Saturday, April 04, 2009

And no George Clooney in sight!

How is it that after watching so many hospital dramas I have not been able to find one good looking, to die for (pardon my pun) doctor on all my trips and stays in hospital? (Answers on a postcard please)

The operating theatre was smaller than I had imagined, stark and white with a accent of silver. I imagined the operating table to be wider and the feel of the place to be less clinical.

The nurse was friendly and had warned me about the bright lights and all of the people who would be there. It seemed like the staff waiting room when there was nothing else going on they could come and hang out and watch. Definitely not for the feint hearted.

I couldn’t believe that I had actually consented. I knew that I had because they had twice checked my signature on the consent form but I was clearly under the influence why else would I have willingly done that. I had consented for them to cut my throat (okay my neck) whilst I was awake. That had to be utter madness, after all why would anybody in their right mind do that (which probably answers some of those other questions)

At least I wasn’t living in the days when there was sawdust of the floor and patients being instructed to bite down, but seriously cutting my neck whilst I’m awake. I don’t even like having blood taken and we know how often I have to do that. I was good, you would have been proud of me, although when the 10 minutes turned into 30 I was getting just a little agitated and any novel factor that existed had almost certainly worn off and I could swear that mr lupus was in the room laughing at my expense.

I had two surgeons, which they assured me it was because I was special (okay it might have been me who suggested that) and between the two of them they eventually managed to prise my lymph node from its depths.

This is where it all went pear shaped and I discovered just how insensitive doctors can be. I had focused so much on the operation that there had been little space in my mind for ‘the results’ and then one doctor casually said to another “it looks like *****” I didn’t hear the “*****” because I got stuck at the “it looks like...” and tears started to roll down my cheek. (Tears are amazing how do they know when to show up?)

I didn’t ask because I didn’t want to know but now as I wait for the results I’m not sure that was one of my better ideas.

Because of its size I was told I could give it a name, so Joey was introduced to me and the outside world before being sent off to explain himself to the experts.

Am I worried about the results, a little but then worry never got you anywhere did it?!

Thursday, April 02, 2009

Have you lost weight recently?

I was really excited the night I went to sleep and woke up a size thinner okay maybe it wasn’t quite an overnight thing but it sure felt that way. One day the clothes I was wearing as a result of the steroids clung snugly to my hips the next day they didn’t and I found I could step in and out of jeans without having to unzip them. How cool is that!!

Although there were still some ‘tummy’ issues I was excited as I could actually parade around, hold my stomach in and pretend I had a six pack and it became believable and people started to comment on my new look. I was even able to take things out of the jumble bag because they now fit me and then all of that turned sour by the uttering of one simple question:

“Have you lost weight recently?”

Now don’t get me wrong there is nothing wrong with the question, in fact I would happily answer “yes” to anyone who asked. The problem here was the source of the question; the way in which the question was uttered; the fact that it had been asked several times and always in response to pain and swollen lymph nodes which incidentally were not responding to the cocktail of drugs being administered and lastly the fact that as soon as I proudly said “yes” the questioner immediately bowed their head and started writing.

How could the joy of dropping a dress size suddenly become a sinister occurrence?

I had had an uneventful lupus few days was this one of his tricks to lull me into a false sense of security and then pounce or was it something more sinister and he had teamed up with one of his friends to whack me from behind and trip me up all designed to keep me under his thumb?

It definitely threw a spanner in the works but on Friday 13th (it’s okay I’m not superstitious) all would be revealed they were going to operate!

Monday, March 30, 2009

A stay in hospital has its good points!

As a single woman living alone, there are very few browny points when mr lupus comes to call so much so that I have to admit that my recent stay in hospital highlighted just what I have been missing (sad but true). Sitting alone on the settee, comforted by 24hr TV I realised that being in hospital, although it meant you were sick and liberty impaired also brought some perks:

  • Three meals a day. Okay there was no cordon bleur chef but it was hot and hand delivered
  • Fresh linen every morning
  • Drugs. You have 24hr access. Not that I'm a drug adddict (although mr lupus is working hard to make me that way) but it could be a perk
  • Clean clothes everyday. Okay the hospital fashion label may not be the best for your street cred but you're not going anywhere.
  • Transport to and from appointments. A very nice man wheeled me to my lung scan and inspite of looking a little the worst for wear he found me attractive.
  • A choice of being with people or being on your own in your own private space. Well curtains drawn around the bed is private isn't it)
  • Room service. At the touch of a button you have access to a team of people who are there to serve you.
When put like that maybe being in hospital is not that bad!

Okay I'm not advocating more stays in hospital just highlighting some of the benefits just in case you or I find ourselves there.

Here's to a pain free and hospital restricted 2009.

Tuesday, March 24, 2009

Surely I must be up or some kind of award!

Before the end of February I had been to casualty three times, visited my GP twice, met up with my rheumatologist and spent six days in hospital. I don’t know about you but if I had to schedule those times in my diary I wouldn’t have been able to do it. Not that I am in a competition with you or anything like that but I challenge you to beat that.

I wonder if there is a Guiness Book of Records opportunity here. Now don't get me wrong it's not that I am excited about this 'achievement' it's just that I believe that we need to make use of what we have in our hands. There has to be some benefits in it :-)

Apparently (just in case you didn't know) mr lupus is active and he seems to have plans!

I am grateful, however, that this month has so far been a quiet one apart from the bald patches and the biopsy (but that’s another story)

I think that I am still recovering from the lupus noise of previous months. But the great thing is the sun is shinning and it’s a wonderful day particularly as I have prised myself free from the settee and inspite of mr lupus chatter I’ve made it out of the house and into the real world where there are people around and he has to keep himself in check.

mr lupus eat your heart out because today I win!

Monday, March 16, 2009

I understand the power of a shower!

The white of the sides were dazzling and the water that moved between them was at first warm and soothing but then before she knew it, it was cold and uninviting and just as she thought it could not get worst she found herself in an awkward and uncomfortable situation and the stark reality hit her, she was alone and she couldn’t get out….

If this was the opening paragraph to a best selling thriller novel it would have you gripped and ready to read whatever came next. Unfortunately this is not the case it is the story of the day I decided to take a long soak in the bath and found that the combination of inflammation and reduced power meant that try as I might, I couldn’t get out. mr lupus had me in his grip and there was nothing I could do about it.

Armed only with a telephone, an iPod and my sense of humour, I realised that I would simply have to wait it out. mr lupus would have to let go of his grip eventually wouldn’t he?
Of course he would!

After what seemed like forever and several phone calls later I was finally able to wrestle myself out of his grip okay perhaps not wrestle exactly just get onto my knees and push myself to my feet and get myself out of the bath vowing to never return. Know I really understand the power of a shower!

I did however learn some lessons along the way:
  • Let the water out first, an empty bath is so much easier to manoeuvre in.

  • When mr lupus is on the attack and you are home alone having a bath is not the best decision to make.

  • Humour is a powerful weapon. My friend laughed all the way through my desperate phone call to her but fortunately for her I was laughing too.

  • Faith and hope are great friends to have along the way. I believed that I was going to get out…eventually.
mr lupus is really upping his game so I simply need to up my because I cannot let him win.

Tuesday, March 10, 2009

I've got lupus!

Okay that may not be a startling revelation as I have now been diagnosed with lupus since 2001 but today, in this place, right now I know that I have lupus and no amount of reframing and thinking positively is going to change this moment right now (the next moment will of course be different) and I have to admit that this is really difficult to get my head around.

As the harsh reality that 'de nile' is a river in Egypt (that joke is so much better when you say it) hits me it feels like being stuck in quick sand (not that I have ever been in quick sand, but I have seen the movies) where the more you wriggle the deeper you sink. I am sure that those are words from a song, hold on for a moment I'll check (Don't you just love the power of the internet). I was right, the words are from UB40 and Guilty. I bet you are happier now that you know that)

Where was I, oh yes, 'de nile' There is something so different from having mr lupus display random acts of 'kindness' to knowing that you are tied to him 24 hours a day 7 days a week. It'a bit like having a partner and you suddenly get to see his true colours and realise that you really don't like them.

lupus like any other label, not just illness, has a way of defining you (if you let it of course) and becomes the lens through which you see the world. I don't mind sharing with you how I have been feeling and a lesson that I learnt recently.

My fertile imagination had created a whole new world in my head, a world where mr lupus was king and living a rich and opulent lifestyle and I was his reluctant servant.

I could only see the things I couldn't do. I couldn't run, concentrate for long periods of time, walk long distances, sweep down the stairs, run the marathon etc. The last one jolted me into reality I had never wanted to run the marathon so the fact that I currently could not (and believe me I couldn't) really shouldn't have been a problem but there I was caught up in the web of his deceit and lies.

he was working overtime to plant serious doubts and exploit weaknesses in my mind and believe me he is good, he could win awards for his efforts.

I found that my value was linked to his antics and the harder he worked to challenge me the lower the price of shares in me became with no obvious way out of the slump.

And that is when it happened (well you know I couldn't stay there for too long). Like a bolt of lightening (well I needed something to rise out of the slump) out of the blue I had a brain wave (great to know that that part of me was unaffected by mr lupus' antics) all this focusing on the stuff that I couldn't do really was getting me nowhere and quickly.

I needed to find a lifeline and at that moment, I knew exactly what I needed to do. I simply needed to focus on all the things I could do. (Interesting how lying on the settee and flicking the channels suddenly becomes a skill.) and ask for help with the things I couldn’t. Well that last part is still a work in progress but at least I am on the road and what a great opportunity to learn a new skill.

Monday, March 09, 2009

The power of The Pred!

I'm sorry but I need to start this conversation by singing the praises of prednisolone. Yes you heard me right, I actually have some good things to say about steroids.

I know that Prednisolone has a bad rep and I, for one, have been waving that flag after all it gave me the familiar 'Moon Face', an excess of bodily flesh, euphoric highs and almighty lows but following 'Swollen Fingers; it also gave me a life line.

The very moment prednisolone entered my blood stream, my whole body seemed to jump for joy and get excited. In fact I could almost hear the third finger on my left hand squeal with delight as it recognised the familiar sensation trickle through my veins.

prednisolone actually helped me to feel better and to quite literally regain my grip on things and I have to admit I started to get cocky and I really believed that I had found the weapon I needed to fight mr lupus head to head.

Well I now know that at the first sign of prednisolone, all mr lupus did was withdraw for a little while to regroup and then come back with a vengence.

So there I was left hot (should have been cold but inflammation is a heat thing) and alone having to fend for myself against the evil of mr lupus.

Prednisolone is still on the menu but I will never trust it again because it chose to betray me and didn't live up to its promise!

I guess you could say I don't forgive easily, well I think I've got justification don't you? I've issued myself a challenge and I am going to work hard to achieve it. I will not get moon face and having lost weight I refuse to take it back so whilst it may be knocking vehemently at my door, I'm choosing not to open it!

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Swollen Fingers!

No, that is not the name of a new rock band, (wasn't there a band called Stiff Little Fingers or something similar) although I am sure it would go down a treat. I can see it now, a music venue full of screaming fans all ready for the band to perform their latest offering. 'No Grip' oops, there I go getting away where was I oh yes mr lupus.

So what exactly is Swollen Fingers?
It is in fact the new game mr lupus is playing with me and although it now seems to be a daily routine, I have no idea what the rules are or how exactly I am supposed to play it.

I tried to be really cool and sophisticated about it all allowing mr lupus to play his little game afterall I'm a big girl and I'm not phased by that kind of thing.

I've noticed one of the things about mr lupus is that when he is ready he becomes 'he who would not be ignored' and he continued to play his game until I had no choice but to take notice of him. It was then that I began to fully appreciate the role the third finger on my right hand played in my life. When last have you stopped to give it any kind of consideration?

Until that point, I never realised that finger was actually a star player, quietly bringing up the rear without conversation or complaint doind and supporting.

I am not ashamed to say I have found a new love and appreciation for my fingers and whilst there is no significant other in my life they are the current object for my affection.

So you see mr lupus I can still see the benefits in the challenges you throw my way.

Wednesday, January 21, 2009

My least favourite place in the world!

I just wanted to tell you about a recent visit to my least favourite place in the world. The reason I am sharing it with you is not because I want to promote it but because whilst it is my least favourite it can sometimes be useful and this is one occasion when this was definitely the case.

I would have let you know earlier but mr lupus was playing with my hands and the experience was such an amazing one that I couldn't really focus on anything else. It was something that I had never felt before (and to be perfectly honest will be quite happy if I never feel it again).

I was also disappointed that I managed to fall at the first hurdle with one of my major 'resolutions' for 2009. Having discovered that the power of asking for what you want is more likely to help you get it (providing you are not being selfish of course) I promised myself that I was going to exercise my right to 'ASK' in 2009 on the belief that the universe and everyone in it is willing to help and answer my call!

And then it happened.
I woke up and realised that things were not quite as they should be. My hands refused to comply, my balance was a bit off and the dreaded pains in my legs were my morning companion. I am not sure whether it was at this point that I thought I should visit 'that place' or whether the effort to squeeze toothpaste or turn on the tap alerted me to the fact that my body was not quite operating as it should.

Now you'd think that all of this would be pretty straight forward, I'm not doing too good, I need some help and I know where to go and get it but due to the 'hand' challenges driving was out of the question, (although it did cross my mind) but still I didn't ask.

I cancelled a workshop that I was doing that day for obvious reasons, made a call to a friend on the same road but on no answer I left a rather jovial message on the machine and carried on with my morning (albeit slowly) as though there was nothing wrong. I got a call back from my friend who had also been called by the person I called to cancel the workshop to check that I had ‘asked’ My friend was appalled that I hadn't 'asked' her to take me to the hospital and quite frankly so was I.

Having gotten over that, I arrived at my least favourite place in style and spent the time entertaining the medical team, well they have a challenging enough days without me adding to it.

I lay around for hours half naked on a gurney and then on the assessment ward, which might have been quite exciting if it wasn’t a public place, I wasn’t in pain and I wasn’t alone (well my friend was with me for most of the time) but I did manage to connect with a patient who softly enquired ‘Did I hear that you had lupus? My sister has lupus can I ask you a few questions?

I put my pain and situation to one side and did my usual encouraging thing, pointers to look out for and ways in which she can help oh and for good measure I gave her my number should she or her sisters ever wish to call. Not bad for an afternoon’s work.

And then they did it!
The Rheumatologist looked at my notes, did her observations, asked me some questions and left me with a handful of white things that she assured me would help. I willingly took them. At this point I probably would have taken anything and in that moment, in that place she was write and I started to feel better.

I learnt the things I cannot do when my hands don’t work and realised that I am not bothered by all of them.
  • Turn on the tap
  • Wipe my bum
  • Squeeze the toothpaste tube
  • Put on my underwear
  • Put my hair in one
  • Open the front door
  • Eat
  • Connect with people online
But more importantly I learnt the importance of 'asking' and I now know that it works, so the next time you need help, support, love, prayer etc. remember that a small word can make a huge difference in your world.

Friday, January 16, 2009

“Hold a true friend with both hands”

That is a wonderful African proverb and although I am not his friend, I'm convinced it is one that mr lupus is taking very seriously.

His latest antics are interesting to say the least. I wake up in the morning and he appears to have been holding my hands between his for the whole night.

I like the idea of a man holding my hands all night, well not just any man, a tall dark handsome, breath taking reflection of God's heart for me kind of man, what a romantic vision! I could dine off that one for a while but alas mr lupus does not fit the bill in anyway shape or form, so let's get back to talking about my hands.

My fingers are swollen and my rings are developing a relationship without me, but I'm still full of hope, keeping driving to a minimum for obvious reasons, but still believing that, whilst it may not be today, it could be tomorrow that my hands resume some kind of normality.

I will otherwise have to resort to some form of defensive action which includes bending, stretching and probably a lot more pain. I'm hoping I won't have to resort to that one.

Saturday, January 10, 2009

There are always consequences!

Today I spent most of the time in my usual horizontal position cuddled by my the settee and comfortably located behind the curtains and away from the outside world. Do you know that after three years of watching Diagnosis Murder I actually found one I hadn't seen before. Amazing I didn't think that was possible, but it just goes to show you that the world really is full of possibilities. You know that this means I will have to continue to watch Diagnosis Murder just in case there are some others I have missed. This gives me a valid reason to keep watching mindless TV (for research purposes of course).

After my day on the settee I thought I would do something different in the evening and ended up walking around the Tate Gallery. Yes you heard me right I was walking around the Tate Gallery and all without any crutch support. I have to say I am impressed and not just because I didn't use crutches, art really is interesting.

But as the night closes in and the day comes to an end I realise that the no crutch thing really was me being ambitious and as I take up my regular spot on the settee I know that am currently paying the price for an evening of fun.

Was it worth it? You bet it was.

And tomorrow is always another day.

Tuesday, January 06, 2009

Okay who turned the freezer on?

I've discovered something new about mr lupus (is there no end to this man?) he loves the cold.

How do I know that?
Well as I sit here writing this my hands are swollen (but I am a writer so the words must go on) and my feet feel like blocks of ice so I am convinced that he and his mates are taking advantage of the change in weather and are currently skating over the ice that now seems to have formed in the nerves in my legs and my hands and are having themselves a whale of a time. I on the other hand am not faring quite so well but I have never (well almost never) let pain and discomfort stop me from fulfilling my mission.

I am now totally convinced, even though the medical practitioners may state otherwise, that I am a child of the sun and only regular doses of sunshine can save me. I wonder if I can get that on prescription? Now there's a thought and definitely something I will take up with my Rhematologist when next I see here.

But for today, I am just going to wrap up warm and wait for my legs to thaw so that I can use them again.

Nothing like the simple pleasures in life!

Friday, January 02, 2009

It's a new day!

I have successfully navigated my way through three or maybe four weeks of hell living with mr lupus, three doctors visits and mountain of pills and pain killers to be able to say Happy New Year and now that normal positive thinking has been removed. Now the half full glass is back in its rightful place I am led to believe that the iron grip of mr lupus in the last few weeks of 2009 was actually him doing me a favour. Yes he was working for me this time (I know that maybe hard to believe but..) and having his wicked was with me in 2008 to make room for a more positive 2009.

Well in order to make room for something new you need to get rid of something old first. (I must try that with my wardrobe :-)) So here is the new me (almost) pain free but definitely up from the settee, no longer watching 24 hour tv and drawing my curtains. If nothing else happens that's okay because that alone says mr lupus I'll take it from here.

What do you need to get rid of to make space for 'healing' and fun in 2009? Maybe now would be a good time to make a change and do something different. Sit up instead of lying down, turn off the TV and turn on the radio, write down how you are feeling, anything that means this is not a prolonged 2008 and infact a new year, a new dawn and a new beginning.

I'm actually looking forward to the powerful possibilities for 2009 so I wish you a pain free, fun filled 2009!

Watch this space because whilst I have the energy I am going to use it!!