Being ill sucks

Sunstorm · Post by **Sunstorm** » Tue May 20, 2008 6:31 am

A few of you who know me may know that I've been unwell for some time. For the past 4-5 years, I've been having bruises/lesions appear on my body for no apparent reason, with the number and seriousness of the lesions varying each time. It had been explained away by my GP as something called Erythema Nodosum - basically, I contract anything like a basic cold virus, or flu, anything at all, and then my skin decides to react by producing these lesions. In late January this year, I fell very ill with the condition and that's why I spent so long away from the site... I've actually never got rid of the lesions since late Jan/Feb, and in the past 3 weeks have seen them go completely nuts and appear everywhere.

I very recently spent a few days in hospital and fortunately, those few days eliminated anything life-threatening that could be causing the bruises. However, I had some chest x-rays done and they have now revealed what has been described as a dark patch on my right lung by my breast-bone. Now, it is thought that I have Sarcoidosis, which is very similar to Erythema Nodosum, but the lesions manifest themselves in my lungs too, as well as all over my body....

Now, I can cope with the pain the lesions cause, and since I know it's not life threatening or shortening, it's not something that causes me huge worry, but the problem is that when I have these bruises, my salary drops to 60% - when you're saving for a wedding, this is a huge problem. I'm actually more worried about hosting the wedding next year than I am about these stupid lesions.

So here I am, sat at home - bored stupid. Under-earning. Getting seriously p**sed off that I can't even basically provide my salary without these lesions interfering. That's the biggest kicker - there's nothing I can do about it. When the lesions appear, like I said, they're a result of anything from as simple as a cold-virus. There is no painkiller or antibiotic that even touches the lesions - all they can do is give me antibiotics to clear any other virus/infection I might have, then the lesions begin to disappear of their own accord. I was advised that I should try and stay healthy in general, and I should be lesion-free for most of the time, but here's the irony - I haven't drunk alcohol or smoked (anything, legal or not!) in over 9 months, I've been eating nothing but healthy, and yet the condition seems to have actually worsened in it's appearance than it was before I quit all the good stuff

So, there we go. Being ill certainly sucks - moreso when there's bugger all you can actually do about it. What I can say at least is - I'm obviously still lucky. With the likes of Dirge's accident and Richard's passing, I count myself very lucky that nothing more serious has happened to me. At least now if I do have to spend any time away from the site, you'll all know why. As frustrated as I am sat here, sharing my thoughts gives me something to do.

Razorclaw · Post by **Razorclaw** » Tue May 20, 2008 6:50 am

I had been ill and sat a whole month at bed a few years ago.The pain on my neck was so intense i couldn't even breath. And i had to eat light foods for a year.It was a serious one.Enjoy your life dude,even if it's an under-earning. Come to think of it,marriage is just a more official image of a relationship. You will be treated and treat Mrs Sunstorm the same way before and after the marriage

Bumblebee · Post by **Bumblebee** » Tue May 20, 2008 11:25 am

I know hearing this isnt much but our thoughts and prayers are with you and eveyone else who has fallen on tough times. Hopefully your illness will work itself out of your system.

Commander Megatron · Post by **Commander Megatron** » Tue May 20, 2008 1:34 pm

Will you always have it Sunstorm? Will it ever just **** off on its own?

Arcee · Post by **Arcee** » Tue May 20, 2008 1:38 pm

Commander Megatron wrote:Will you always have it Sunstorm? Will it ever just **** off on its own?

That's what I was wondering. Also, do they know what causes it? I'd never heard of such a thing before--what an ordeal.

Kup · Post by **Kup** » Tue May 20, 2008 3:27 pm

well in any case you've got our support, lets hope that you can battle this thing out of your system

Commander Megatron · Post by **Commander Megatron** » Tue May 20, 2008 3:53 pm

Agreed, and if there is anything we can do to help you only have to ask.

Kup · Post by **Kup** » Tue May 20, 2008 4:15 pm

does that include poking it out wityh a stick? j/k

Dinobot · Post by **Dinobot** » Tue May 20, 2008 4:16 pm

I've asked a friend of mine in the medical field about the disorder and he has no idea whats going on. I hope it does go away soon for you. We're all here for you if you need anything. Although I dont think I can drop anything by seeing as you're nearly across the world from me.

Arcee · Post by **Arcee** » Tue May 20, 2008 4:36 pm

Dinobot wrote:We're all here for you if you need anything. Although I dont think I can drop anything by seeing as you're nearly across the world from me.

But we are good for emotional support.

At least, we try to be...

Sunstorm · Post by **Sunstorm** » Tue May 20, 2008 5:34 pm

Thanks guys, seriously.

I suppose I'm almost as much in the dark about the condition as anyone else, really... as I understand, there is no "cure" to stop them happening and currently, there isn't a known treatment that reduces the lesions. I take antibiotics to remove any causing viruses only, they have no effect on the lesions... I have tried all sorts of painkillers to help, right from simple paracetamol through to the real serious stuff like Naproxen and Tramadol, but they only ever take off "the edge", as it were. Since the lesions are on the surface of the skin, it's physical contact that actually hurts, so ironically standing gives most comfort, where I'm not touching anything. Sitting kinda sucks, and laying down is just hell as lots of my body is touching a surface. Until they invent weightlessness in your home living room, I can't see a solution

I am hoping to learn more when I return to the Chest clinic, so fingers crossed they may have some more answers... after 5 years so far though, I'm not holding my breath

Kup wrote:does that include poking it out wityh a stick? j/k

Actually, Mrs S likes to poke at the lesions sometimes to make me yelp. She's twisted. It hasn't had any positive effect yet, apart from making her laugh

Roar · Post by **Roar** » Tue May 20, 2008 7:58 pm

I can only mirror the sediments of our collegues about needing help and asking as well as hoping you feel better soon.

I know that it has to be infuriating to need help and answers and not know if you will get either.

Ramjet · Post by **Ramjet** » Tue May 20, 2008 9:59 pm

Sounds like the shingles. But they go away after a while. Anyway, anything we can do, let us know!

TheDawg · Post by **TheDawg** » Wed May 21, 2008 3:11 am

I know how you feel and how frustrating an illness can be, especially when it's been going on for some time and there's seems nothing 'out there' that can cure it.

I myself have been off work for six months now (the first time in over 14 years of working, i never been out of work). In November of last year I was rushed into hospital after having some sort of seizure. Few weeks before this I was getting really severe headaches and thought nothing of it. I still get severe head pains daily and some days can't even get out of bed there that bad. Since Novemeber I've been in and out of hospital with fits, dizzy spell and episodes of feeling really unwell where I can't control my bodys reactions although I'm fully consious. I've had MRI scans, blood test, seen numerous spealists with still no answers. They've ruled out the obvious like MS, epelipsy etc... but it's still very concerning that they can't put there finger on the exact problem/cause. I'm taking numerous tablets whcih seem to supress the fit/episodes a little so I can try and live some sort of normal life, but it's difficult. I've recently even been to see a reflexologist for treatment as well as a course of Bowen treatment and have felt slightly better in recent weeks, but still not right.
Enough of my rambling. I hope you get well soon SS and everythings ok with the dark patch on your lung. Thinking of you

Sorry for the thread hijack, but glad I got it off my chest.

Sunstorm · Post by **Sunstorm** » Wed May 21, 2008 11:57 am

I can only wish you all the best, Dawg. It is indeed SO frustrating when even "the experts" have no answers for you, just a selection of pills and every test under the sun that show nothing.

What a bunch we are on tfl!

It's like a soap opera on here recently, honestly. I've been on many forums and although this is by far the smallest, yet closest knit, I've never read about so many incidents like Dirge, Richard, Dawg and me.... I'm sure there are more of us with some dark times going on in our lives... Funny thing is, I'm a very private person and this is probably the first time I've shared my own frustrations and experiences with people in such an open manner, and I have to say it already feels like a hundred-weight has been lifted off the chest.

Thanks for all the words of support guys, I know I'll get through it

You're all the best

Rumble · Post by **Rumble** » Wed May 21, 2008 12:49 pm

Sunstorm and Dawg, hope that it all eventually turns out better and that you both get the answers sooner rather then later. Also to echo my fellow TFLers, if you need anything just ask and I will see what I can do.

Rumble.

Countdown · Post by **Countdown** » Wed May 21, 2008 12:58 pm

Sunstorm & Dawg, I wish you both the best with your relentless illness. With the advances in the medical fields out there, they'll whip it out of your system. I'll pray for you both to beat them.

I know I am not a doctor, but for now I prescribe a few transformers figures for each of you.

Maybe, one for each hand. You can have mock battles. Not that I ever do that...

Sunstorm · Post by **Sunstorm** » Wed May 21, 2008 1:16 pm

Ratchet wrote:
I know I am not a doctor, but for now I prescribe a few transformers figures for each of you. Maybe, one for each hand. You can have mock battles. Not that I ever do that...

and not that I ever make the voices for each of them when I do it too

optimusprime · Post by **optimusprime** » Wed May 21, 2008 5:24 pm

i hope u feel better having a version of the plague is not good at all my friend

Post by **Time Traveller** » Thu May 22, 2008 12:15 am

Kein scheiß! We are a bunch here... You guys are a bit too young to remember my incident, i almost dropped dead of a genetic heart condition i had here a couple years back. after winning out against tough odds, i survived, and they did an emergency heart surgery to fix the condition. what made me ill for five months after was dealing day and night with the insurance company and the hospital's billing dept... Hang in there, guys, and for those of you with no huge health problems... be careful!!!