Back Into Hell

[Brighteyes]

Long story short - I've been on Ciclosporin for two years now. I can honestly say it has made a huge difference to my severe Palmoplantar Pustular Psoriasis.

However, my math deficient Dermatology Clinic can't seem to give me an appointment that occurs before my meds run out.My next appointment is June 11th but my meds run out on Monday. Consequently, after just 3 days dry, I revert back to looking like the surface of Mars.

So I'm keeping a Journal and hopefully pictures (don't worry, I will warn you in advance) of my journey Back Into Hell.

The rationale behind this Journal is

a) because I'm probably going to need somewhere to rant
b) so I can raise awareness via social networking (and hopefully steer more sufferers to the site)

Might as well try to get something positive out of it.

I'll be absent over the weekend as I have to get ready for the onslaught (stocking up on books/DVDs, food, organising school runs and setting up my bed downstairs etc) as I wont be able to walk further than the loo by next week.

At the moment my Psoriasis score is a lovely, snuggly 8. Lets see what it looks like by June 11th. I'll begin the updates on Monday.

TTFN!

P.S Dear Mods. I hope posting this in the Please Help Me section is correct. If not please move to wherever you feel it's appropriate.

[Hanna]

Sorry to hear your having trouble getting your meds, its amazing how quick that stuff kicks in
I've been on it a few times, I was able to get repeat prescriptions off my GP as dem clinc sent reports to my surgery so they knew I was on it, never a check up with them just the drugs, it might be worth checking if you can do this, save you a lot of stress.

[Fred]

P.S Dear Mods. I hope posting this in the Please Help Me section is correct. If not please move to wherever you feel it's appropriate.

That'l be me then I find this is one of the hardest decisions to make when someone posts in this section, and I try to get it right.
The idea behind the Please help me section is for those members who are desperate for someone to talk to. They can start a thread and those that subscribe will get an email and hopefully rush in and help if they can. I don't want to put people off posting in this section but I have to make a decision, so if you don't mind I will move it to Psoriasis And Psoriatic Arthritis Topics Ooh I felt just like Alan Sugar then.  

Please carry on with your journal I wish a few more members would do it. But try not to talk about going back to hell, I know you probably will but if your only on an 8 at the moment I don't think you will help yourself by looking to far in to the future.

Please don't hesitate Brighteyes or anyone to tell me I'm wrong in moving this thread. I want this section to work and welcome your feedback.

[Brighteyes]

Hey Mr Sugar ............. actually I see your point re: moving the thread.

I can edit the title (if you tell me how) as, on reflection, it does sound a bit over the top (my dark sense of humour I'm afraid). Bad me.

Yes, you are right that my score was only 8 when I posted but I know all too well that my condition deteriorates faster than the speed of light without the meds. Believe me it will shoot up but I'm preparing mentally for the inevitable.

I'm publishing the journal on my blog too (have added a linky to direct people to the Psoriasis Club forum). I'll make sure the posts are balanced. I want to keep it real but I don't want to grind people down with doom and gloom either.

Right..........am off to stock up on coconut oil......and clingfilm.

Make of that what you will.

[Fred]

I can edit the title (if you tell me how) as, on reflection, it does sound a bit over the top (my dark sense of humour I'm afraid). Bad me.

No I didn't mean the subject tag "Going Back To Hell" when I said try not to talk about it. What I was trying to say was don't think of it as going back to hell as it's a negative thought and I was trying to cheer you up.

But as I posted in your other thread I remember who you are now. And I know no matter what I say to you, you will have forgotten it within the next couple of minutes.

I will leave the title as is, it's more you.

[Troll]

Fred I have been thinking about this and I think you should put it back in help me! Brighteyes gave a lot of support to others on the Lime Green and like she said in her intro

Quote:

---

I stopped posting because, frankly, I went into a deep pit of depression for ages and by the time I climbed back out of it I was too 'embarrassed' to post again.

Maybe she came back to us and posted to test the water ready for what she may be facing in the next few days and see what support was available in return.

Sorry but you did ask and you did point her there in the first place. RE: Hello..........again!

Oh and while your here please make this internal live.

Edit by Fred: Link made live.

[Fred]

Fred I have been thinking about this and I think you should put it back in help me! Brighteyes gave a lot of support to others on the Lime Green and like she said in her intro

Quote:

---

I stopped posting because, frankly, I went into a deep pit of depression for ages and by the time I climbed back out of it I was too 'embarrassed' to post again.

Maybe she came back to us and posted to test the water ready for what she may be facing in the next few days and see what support was available in return.

Sorry but you did ask and you did point her there in the first place. https://psoriasisclub.org/showthread.php...95#pid5595

Oh Troll I must admit I obviously didn't read it properly first time round, I feel awful now

You don't need to apologise, I want the Please Help Me board to work and yours and anyone else's feedback is very welcome.

I had a lot going on behind the scenes on the forum at the time and suddenly got notification of a new thread in Please Help Me. But that is no excuse, I should have left the other problem alone and not dived in so quick.

What to do now? I'm unable to contact Brighteyes as she has PMs and notifications turned off. I could contact her via Email but as she has the other options off I feel that would be an invasion of her privacy.

If I move it back it may not get noticed and those that do subscribe to the Please Help Me board won't get a new notification. When they got their original notification they would have already seen it had been moved so probably wouldn't have bothered logging in to help.

Oh B*&^%r what shall I do.

Brighteyes if you are reading this off-line I'm sorry for moving your thread, you know by past experience on the old forum (or as Troll kindly said "Lime Green!) the members of Psoriasis Club have been and still are a great bunch of people, and I can assure you there is always someone here willing to talk to anyone who is feeling down.

I cocked it up this time and can only apologise. Please feel free to start another thread if you feel the need, or you can contact me direct via the Contact Us button bottom left to give me a thick ear

---

Regarding the Please Help Me board if you want to get notification when someone starts a new thread and you feel you may be able to help please see this thread:
EDIT: The Please Help Me board has now been removed.

[Brighteyes]

Hi Fred,

sorry, I wasn't aware I had PMs & notifications switched off. How do I switch them on (you know me, I type, I can boil a kettle, but that's about as technical as it gets with me)?

I'm getting e-mail notification of new replies (which is how I saw this). You have permission contact me via personal e-mail if required. I check it everyday.

Troll is correct about 'support'. I know from past experience I've needed it in spades at my lowest points. The question of where you put the posts is entirely up to you though. I'm happy whatever. I know you're all a lovely, supportive bunch.

[Fred]

Sorry, I wasn't aware I had PMs & notifications switched off. How do I switch them on

I just went to change it for you but noticed you have now figured it out. For future reference if anyone else has the same question: https://psoriasisclub.org/showthread.php?tid=1243

I'm getting e-mail notification of new replies (which is how I saw this). You have permission contact me via personal e-mail if required. I check it everyday.

Email notification is on by default for replies to posts you have made, you can turn them off if you wish see "Messaging and Notification" in your UserCP under "Default Thread Subscription Mode" though I recommend you keep it on if you want to know when someone has replied.

The question of where you put the posts is entirely up to you though. I'm happy whatever.

OK let's leave it here now, but please don't hesitate to start a new thread in Please Help Me if you do need help and I will come running with some very strong Coffee.

EDIT: The Please Help Me board has since been removed.

[Brighteyes]

Well here we are on Day 1.

I doubt I'll have much to post about as it takes around three days for my system to dive into Cyclosporin Deprivation Mode.

I'm as prepared as I can be. My 'bedroom' is ready. I'll be sleeping on the sofa bed in the lounge for the duration as it's close to the bathroom and the all important kettle.

My side table is stocked with everything I could want entertainment wise and I get to order some treats (I.E. Books & DVDs) tomorrow. Of course, I'll be using the Amazon linky from here.

The school have sorted out an emergency place at Out Of School Club for our Pesky Kid so Dad is on school run duties for the forseeable. Now all I have to do is concentrate on getting through the next couple of weeks without completely losing my sanity/sense of humour but am feeling calm and positive at the moment

That's about it really.

XXX