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scrumptious

Little things that show yr getting better!

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I am four days post my third tx and i thought it might be fun to list the things i have noticed have changed and prove i'm well on my way to beating this crap condition;

1) for the first time in 5 years i have turned the radiator on in my room

2) i can work a long day and not get that hypersensitivity tingle around 3-4pm that will turn into a flush directly i eat/laugh/go into a heated room etc

3) i can come back from work and have a hot bath and not flush

4) i can come back from work and eat and not flush

5) i am actually functional in the evening instead of laying down in a cool room waiting for the flush to subside

6) i no longer think of suicide twice a day

7) i am happy and optimistic about the future

8) i can actually go into my best mates house in the Winter when her AGA is on and cope!

9) i am not saying no to every evening activity that is offered

10) i am slowly getting some confidence back

11) when i do flush is doesn't go to the next level and turn my face into a pulsating, red mess. It is more like an exercise flush that is tolerable.

12) i can go to college in the evening and concentrate on my work, not my face

13) i actually feel cold sometimes!!! <----- this is unheard of for me!!

14) i can be noisy and animated in a heated room and not flush

15) for the first time i actually feel this condition is beatable

Aaah, i feel better for getting that out, i had to tell someone who can actually understand what a big deal all those things are! :mrgreen:

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Hi scrumptious,

I'm pleased your having good results. I hope the trend continues.

But please don't mention hot baths. The thought alone will drive me crazy. I think its over four years now since my last. :(

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I would add:

Rolling off of my chillow at night isn't a guaranteed one-sided flush in the morning.

Being able to sweat without going hardcore flushed.

Laughing doesn't cause a lasting flush.

I am actually getting to the point where I don't have to prep myself with a spray bottle and a few bottles of iced water every time I leave the house.

It is nice, scrumptious, yes. I'm beginning to think this thing can be mortally wounded as well. :D

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Bob - no idea. I am going to fit in one more before Christmas (hopefully) and then see how my face copes with the weather when it gets real cold <----- good test!

For those who have asked, the link to my laser accounts are here;

http://forum.rosaceagroup.org/viewtopic.php?t=1302 <------ tx 1

http://forum.rosaceagroup.org/viewtopic.php?t=1465 <------ tx 2

http://forum.rosaceagroup.org/viewtopic.php?t=1968 <------ tx 3

It really is quite a slow and subtle change, it isn't like WHAM - i'm fine now! its just a case of slowly, slowly, catchy monkey, hey i didn't flush today! kind of thing. Slowly yr life opens back up again like a flower facing the sun, and you have to come to terms with the fact that somewhere along the line you lost 10 years that you will never get back, and that if it wasn't for the internet you would still be stuck in that terrible dark place where you had no idea even what you had!

So i am trying to accept that whilst i am beyond excited about my improvement, i also have to cope with my loss.

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You didn't necessarily lose anything...that's your background. It's who you are and informs you. Other people I grew up with are dead already, or others are in terminal conditions right now.

That's not to discount our disease...not at all. I'm a hardcore advocate now. I've gotten pretty close to as far to severe as you can get.

I'm just trying emphasize that, given your own personal protocol for a treatment regimen, you can find a way to beat this thing back. :)

I wouldn't be who I am without rosacea and what I've been through. Not wasted time.... But don't get me into value definitions about words that have subjective, personal connotations. ;)

Just glad you're getting better. And I'm feeling much better of late of late. I just want to help others if I can. This disease is so particular, though, it may be another couple of years before we find something that works for most of us. :D

It does feel good to get away from the necessities the disease used to impose on you, tho, eh? :)

I'm a big fan of progress. :headbang: :rockon:

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Noisy and animated? Scrumptious!?

I am so very pleased.

Imagine, coming home at night and having a coffee and a bite to eat without fear. What an exotic notion!

You've got to laugh.

AGAs??

AGHH!!

Roll on a Christmas full of good cheer and unselfconscious fun.

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David - youre quite right, good post to snap me out of my reflective malaise.

I have become a much better person because of this condition, i am more rounded and less selfish, however 10 years of fairly constant pain and around 4 years of mental anguish trying to figure out what to do and how to cope with the symptoms i had, is plenty for the average person to deal with. i think 5 years would have been sufficient, 10 was just cruel, but i guess i should be glad i am still here at all and that the pain has diminished to tolerable.

GJ - i know!! Who would have thought i could come home, have some food, get clean and still have a pale face at the end of it!! What unadulterated bliss. i might even get through christmas dinner this year without a burning red face and fighting the desire to burst into tears at teh patheticness of it all.

Tis a new world and thank god for Dr C and whoever discovered the benefits of laser.

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David - youre quite right, good post to snap me out of my reflective malaise.

I have become a much better person because of this condition, i am more rounded and less selfish, however 10 years of fairly constant pain and around 4 years of mental anguish trying to figure out what to do and how to cope with the symptoms i had, is plenty for the average person to deal with. i think 5 years would have been sufficient, 10 was just cruel, but i guess i should be glad i am still here at all and that the pain has diminished to tolerable.

Understood. ;)

Unfortunately, you can learn a lesson and then get stuck somewhere for several more years just to underscore it.

Glad you're doing better. :D

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Thanks. It was pretty much expected that once i came out and said i feel better i would then flush that evening :wink: Its to be expected and i am not 'cured' but i have to say if i never flush again in my whole life it would be too soon. Bastard condition.

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Thought i'd add to my list 8)

16) i am ridiculously cold! I have gone from someone who hated the heating coming on in the Winter to coveting the radiator and being bloody freezing at night, so much so that i am collecting blankets like other people collect stamps.

I can only think in the past my burning face cancelled out my cold body to give me a feeling of being hot all the time. This change is very peculiar but FANTASTIC :D

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