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Thread: 10 Years In - If Your Struggling Please Read

  1. #1
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    Default 10 Years In - If Your Struggling Please Read

    Hey Everyone,

    Spoiler - this will be long, sorry in advance

    I wanted to write this post as it has been about 10 years since I first started having some pretty noticeable symptoms of Rosacea and ultimately got the diagnosis. I can tell you that it was a very rough start as we all know this is progressive and affects you in so many ways. I have been through some bad depression, thoughts/contemplation of suicide, and just some very dark places mentally over the years. That being said I have lead a pretty happy and successful life especially the past 4-5 years because I have learned to accept most of what comes with this disease and instead focus on what I am doing and enjoying life vs trying to hide. I have a very successful career, have some great family/friends, have had great relationships/girlfriends, go to bars & sporting events all the time. All of this which when I go back to the first five yrs dealing with this I never thought was possible.

    Quick background on me: I am 31 yr old male and have what used to be called type 1 but basically deal with persistent redness and constant flushing. I have tried the gambit of treatments to include: Vbeam (5-6x), all moisturizers/redness reducers/skin care products, different meds to include years of taking clonidine, RLT (Had IowaDavids device), Mirvaso which was a horrible decision haha, I even wear make-up (just foundation).

    I went through the first five years of this disease changing who I was and avoiding everything except my work to get away from being seen with this condition. I got lucky to initially work in fitness and sports so I could work out during the day and blame that for all the redness. Ultimately though I couldnít sit or move in a warm room or dare be in the cold for 5 mins without a reaction. I found this forum which was a blessing because I learned so much and got to see everyone elseís experience although it just didnít seem like it was enough to push me to accept and instead I spent countless hours daily waiting for a new cure or remedy. I actually donít come back here often anymore because I found that I was constantly thinking about my condition which took time from more important aspects of life. In no way is his place bad, it is amazing it was just what I had to do.

    Fast forward to now, I still battle with this I wont lie but I worry more about loss of hair (thank god for hims!) or my noisey stomach then I do my rosacea. I refuse to let my condition stop me from doing anything even if I know I will flush because I know that ppl wont remember the one night you went out and had a red face but they will remember all the fun, deep talks, and hard work you put out. I love going out to bars, red face ears whatever, sometime ppl are too drunk to notice idk haha, I work out daily, I go out with friends to games and go to the beach. Sure I still have my strategies to try and avoid symptoms and flushes but it doesnít stop me anymore and I am happier for it.
    The whole point of this post is that I wish I had someone I could have talked to who could have told me in 10 yrs your gonna laugh and learn a lot and think how dumb it was to let this stuff prevent you from living life. So I wanna offer that help if anyone is needing it whether your struggling for support, donít know how to live normally, or have questions on my treatment/strategies. Again, I wear make-up daily Ė have never been asked about it (wearing for 4-5 yrs) so if youíre a guy and maybe thatís something you wanna know about let me know. I donít get on often but will try to more even if its to respond to DMs and comments. If there is one thing I have now in these 10 yrs is experience and I would like to help if I can, maybe I cant and thatís fine but if this resonates at all with you feel free and reach out.

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    So did your condition improve? It sounds great to just stop caring about it, but people are always making comments to me about my face and do so almost with anger, like they find me disgusting. If other people would just let me off the hook I would too.
    I'm recovering from Mirvaso-induced skin damage. Ask me about it if you are too.



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  3. #3
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    Quote Originally Posted by darren1 View Post
    So did your condition improve? It sounds great to just stop caring about it, but people are always making comments to me about my face and do so almost with anger, like they find me disgusting. If other people would just let me off the hook I would too.
    Hey Darren, I would say my condition has not improved overall honestly but how I manage it has drastically. The ****ty part of this is that when you feel the eyes on you and ppl make comments it makes you more anxious and aware and then more flushing. Itís a vicious cycle and absolutely brutal at times. I guess the best way to put it is that itís not that I donít care at all but I accepted it more and it sounds weird but that has lead me to be less anxious which has actually helped with flushing.

    One of the hardest things I accepted was wearing make up daily which tones it down and makes it seem more normal. I still flush through it at times, but that and initially with clonidine improved it drastically and got me to start to seem normal. The first two weeks flushing I would fly to the bathroom to look at myself in the mirror and it was like holy **** it doesnít look bad at all even though it felt like hell. This didnít happen overnight but took time and now I am more relaxed which has helped improve bad flushes even if I think persistent redness has increased overall. I tapered off clonidine bc I didnít like taking it for 4+ yrs which sucked for a week but was fine after.

    Lastly, no one lets me off the hook. If itís bad itís bad but I learned when you feel itís bad you act differently and ppl respond accordingly. The winter is awful for me so I was at work laughing at a joke and my co worker was like you are bright red so I took a min walked outside and tried to cool down bc I didnít want others to notice but walked back in and went on to my daily tasks. I felt red still and not great but I basically acted like it was nothing and moved on. I know it sounds so easy but like I said itís taken me a lot to get here and you gotta suck up the really ****ty parts.

    I still look at others with a lot of envy at times and get mad but the more you keep doing that the worse you will feel and then what you look back in regret wishing you change all of it. Anyway man if you wanna get into it or talk DM me, been there man.




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  4. #4
    Senior Member Mistica's Avatar
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    Hello,

    I am glad you have been able to have a happy life, despite having what are probably fairly mild facial and flushing symptoms compared to many other people, but
    please don't insist or encourage that others ignore their symptoms and just get on with life
    .

    Some people, including myself, have such severe symptoms, which can include, not only facial redness, but severe flushing, edema and pain. These are symptoms which can not be ignored. There is no just forgetting about them and going to the beach and sizzling in the heat, with the attitude of "oh well, never mind, if I don't react to my symptoms, no one else will care".
    Some people here, including myself, have been declared disabled by specialists. More than one in my case.

    Each unattended flush does damage and perpetuates flushing.
    I became a REALLY, REALLY SEVERE FLUSHER with just ONE UNATTENDED FLUSH.
    That is all it took. I was even standing in the bathroom in front of the mirror when it happened. I saw it in motion but determined to finish washing my hands and drying them before I grabbed an ice pack. Too late. My face engorged and remained that way for over 2 and a half years. I curse the day I didn't act quickly to shut down that flush.

    I never fully recovered.

    As for accepting this beast of a condition, forget that.
    At my worst, I was sent to a 'suite' of specialists including immunology and dermatology. I saw the heads of department. These doctors stood there and declared they had never seen anything like it, there was no treatment unfortunately and I just had to accept it.
    My friend, who is a fair bit older than me, had accompanied me and the doctors kept referring to him as my father, and it was good I could live with him as I would need on going assistance.

    Accept my condition? Bugger that!
    Fast forward 9 years or so, after MUCH, MUCH hard work and experiments, I am by no means cured, but I am leagues improved. In order to maintain my improvement, however, I have to be attentive to my regime, lifestyle, dietary and supplemental.
    Any deviation from this results in a deterioration of health.
    I still struggle.
    During all of this battle, I developed autoimmune disease, which is another battle.

    Ok, I am at the extreme end of the flushing spectrum, but so are many others.
    I often sit and think to myself,
    if only I knew years ago, what I know now. I'd likely not be in this mess.
    If I had not ignored what I considered minor flushing, if I had not taken this or that medication etc. If I had done my research, found myself Professors of science who actually understood biology - before I deteriorated, If, if, if.......

    I do agree with you that looking in the mirror every five minutes only serves to exacerbate stress and by extension flushing, and one should try and get on with other things, if they are physically capable, but never to the point it actually worsens their disease/condition.
    The crazy idea a number of people have, (including you it would appear) is this condition is purely cosmetic. Medical schools are devils for perpetuating this myth.
    It has to change. This is a physical condition and the range of debilitation differs for everyone.

    I am not sure what you meant by your noisy stomach, but if you have digestive issues (and most people here do even if they are not fully aware of them), if you don't address that, you will be heading for more health issues down the track.

    Finally, I do admire you for wanting to help people, but I had to add some balance to your perspective.
    Previous Numerous IPL.
    Supplements: Niacinamide, Vit K2, low D3, Moderate Dose Vit C, Iodine, Taurine, Magnesium. Very low dose B's. Low dose zinc (to correct deficiency).
    Skin Care: No Cleanser, ZZ cream mixed with Niacinamide gel 4% and LMW HA.

    Treating for gut dysbiosis under specialist care. (This is helping).
    Previous GAPS diet. Testing tolerance of resistant starch.
    Fermented Foods. 2 to 3 days per week, Intermittent fasting -16-18 hours.

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    Hey Mistica,

    First and foremost I appreciate the honesty here in your post, I actually remember reading some of your posts early on and I know you have been here for awhile. I am not here to play who has it worse, I think if your in this forum unfortunately you got the s**t end of the stick, but I can easily say that you have more severe symptoms then I do, no question. Also, if my post makes it seem that this is merely cosmetic then I completely missed the mark because by absolutely no means is this just a cosmetic problem and can be easily dealt with. Let me say in 10 years I have been to about 10 different dermatologists and all have said the same s**t and I am having to explain to them treatments they dont even know about becasue they hold this condition in such low regard. I mentioned Mirvaso below, when this came out I saw a derm and he brought in a rep who was there that day trialing that produt. I was given the whole show and I did as much research as I could at the time but was assured there will be no ill effects except a return to baseline. I used it for 3 days and the effects after took a year and multiple v beams to recover. I took a sabatical from work for a month because I couldnt go 5 minutes without such a severe flush, full face, forehead ears which is why I beleive my flushing got worse in my forehead and extended to my chin. If I could go back in time and stop myself I would have and would have just told myslef to pursue better options.

    I have gone through every treatment I could see but at some poitn I just got tired of it, I am not healed and I still flush and have bad times. When you say mild flushing that triggered me becasue I can picture my first derm telling me "ohh its just stress and you can manage" but no when you distinctive butterfly pattern redness that is almost purple and lasts for hours its not normal. Heck, if I take a hot shower my ears are legit purple untilI fall asleep, but oh wait god forbid i take a nap becasue then I will have red ears and face for 3 hours. Idk maybe I should post some pics to validate my point but thats not my justification behind this, I dont want to be the person saying suck it up and deal I am saying find your treatment and what works and dont let it keep you in this strict bubble of mental anguish and disablement. When I go to the bar, beach, whatever I am not ignoring I am using my experience to compete against the elements and rally behind the success I get. I wear a hat over my face and put spf 50 on every hour, I actually think the sunscreen gets to my bloodflow by the end of the day. But through all of this I find myself less stressed today and in a 10x better mental state then where I was.

    Anyway, the point I want to make with this all is that there are such a big group of us and whatever side of the spectrum it freaking sucks. I use to get jealous of the seb derm types becasue I use to think that I could deal with the flaking and acne vs this purple redness. And if it wasnt for all this experience and trial by error, wearing make-up, taking two diff BP meds, using three moisturizers at night, putting my head in ice baths before going out that I wouldnt realize how far I have come. We are all on the same team and prob should support BBarrows more too on the R&D side, but we all just want to have a better life. I found a way and I want to help anyone who can resonate the same.

  6. #6
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    Quote Originally Posted by Mistica View Post
    Hello,

    I am glad you have been able to have a happy life, despite having what are probably fairly mild facial and flushing symptoms compared to many other people, but .

    Some people, including myself, have such severe symptoms, which can include, not only facial redness, but severe flushing, edema and pain. These are symptoms which can not be ignored. There is no just forgetting about them and going to the beach and sizzling in the heat, with the attitude of "oh well, never mind, if I don't react to my symptoms, no one else will care".
    Some people here, including myself, have been declared disabled by specialists. More than one in my case.

    Each unattended flush does damage and perpetuates flushing.
    I became a REALLY, REALLY SEVERE FLUSHER with just ONE UNATTENDED FLUSH.
    That is all it took. I was even standing in the bathroom in front of the mirror when it happened. I saw it in motion but determined to finish washing my hands and drying them before I grabbed an ice pack. Too late. My face engorged and remained that way for over 2 and a half years. I curse the day I didn't act quickly to shut down that flush.

    I never fully recovered.

    As for accepting this beast of a condition, forget that.
    At my worst, I was sent to a 'suite' of specialists including immunology and dermatology. I saw the heads of department. These doctors stood there and declared they had never seen anything like it, there was no treatment unfortunately and I just had to accept it.
    My friend, who is a fair bit older than me, had accompanied me and the doctors kept referring to him as my father, and it was good I could live with him as I would need on going assistance.



    Fast forward 9 years or so, after MUCH, MUCH hard work and experiments, I am by no means cured, but I am leagues improved. In order to maintain my improvement, however, I have to be attentive to my regime, lifestyle, dietary and supplemental.
    Any deviation from this results in a deterioration of health.
    I still struggle.
    During all of this battle, I developed autoimmune disease, which is another battle.

    Ok, I am at the extreme end of the flushing spectrum, but so are many others.
    I often sit and think to myself,
    If I had not ignored what I considered minor flushing, if I had not taken this or that medication etc. If I had done my research, found myself Professors of science who actually understood biology - before I deteriorated, If, if, if.......

    I do agree with you that looking in the mirror every five minutes only serves to exacerbate stress and by extension flushing, and one should try and get on with other things, if they are physically capable, but never to the point it actually worsens their disease/condition.
    The crazy idea a number of people have, (including you it would appear) is this condition is purely cosmetic. Medical schools are devils for perpetuating this myth.
    It has to change. This is a physical condition and the range of debilitation differs for everyone.

    I am not sure what you meant by your noisy stomach, but if you have digestive issues (and most people here do even if they are not fully aware of them), if you don't address that, you will be heading for more health issues down the track.

    Finally, I do admire you for wanting to help people, but I had to add some balance to your perspective.
    Hi Mistica I completely agree with your point that people with early stage rosacea or flushing conditions should pursue treatment and answers as early as possible. Family, friends and doctors without expertise specifically in rosacea (including some dermatologists) will easily dismiss early stage flushing, giving the patient false assurance. As you and I know the consequences of NOT getting early effective treatment to deal with such flushing can lead to permanent vascular damage that requires all sorts of difficult changes to one's life (and can really be quite disabling at times). I wanted to reinforce your point that if people have early stage flushing and feel things may be getting a little worse, don't take no for an answer and find the best possible doctors to help you (which experienced members of this forum can often advise on). Taking a few gentler medications, and making mild lifestyle changes, at an early stage can potentially avoid you having to make a lot more changes later on after the vascular damage has been done!

  7. #7
    Senior Member nat007's Avatar
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    Quote Originally Posted by sportsfan81 View Post
    Hey Everyone,

    Spoiler - this will be long, sorry in advance

    I wanted to write this post as it has been about 10 years since I first started having some pretty noticeable symptoms of Rosacea and ultimately got the diagnosis. I can tell you that it was a very rough start as we all know this is progressive and affects you in so many ways. I have been through some bad depression, thoughts/contemplation of suicide, and just some very dark places mentally over the years. That being said I have lead a pretty happy and successful life especially the past 4-5 years because I have learned to accept most of what comes with this disease and instead focus on what I am doing and enjoying life vs trying to hide. I have a very successful career, have some great family/friends, have had great relationships/girlfriends, go to bars & sporting events all the time. All of this which when I go back to the first five yrs dealing with this I never thought was possible.

    Quick background on me: I am 31 yr old male and have what used to be called type 1 but basically deal with persistent redness and constant flushing. I have tried the gambit of treatments to include: Vbeam (5-6x), all moisturizers/redness reducers/skin care products, different meds to include years of taking clonidine, RLT (Had IowaDavids device), Mirvaso which was a horrible decision haha, I even wear make-up (just foundation).

    I went through the first five years of this disease changing who I was and avoiding everything except my work to get away from being seen with this condition. I got lucky to initially work in fitness and sports so I could work out during the day and blame that for all the redness. Ultimately though I couldn’t sit or move in a warm room or dare be in the cold for 5 mins without a reaction. I found this forum which was a blessing because I learned so much and got to see everyone else’s experience although it just didn’t seem like it was enough to push me to accept and instead I spent countless hours daily waiting for a new cure or remedy. I actually don’t come back here often anymore because I found that I was constantly thinking about my condition which took time from more important aspects of life. In no way is his place bad, it is amazing it was just what I had to do.

    Fast forward to now, I still battle with this I wont lie but I worry more about loss of hair (thank god for hims!) or my noisey stomach then I do my rosacea. I refuse to let my condition stop me from doing anything even if I know I will flush because I know that ppl wont remember the one night you went out and had a red face but they will remember all the fun, deep talks, and hard work you put out. I love going out to bars, red face ears whatever, sometime ppl are too drunk to notice idk haha, I work out daily, I go out with friends to games and go to the beach. Sure I still have my strategies to try and avoid symptoms and flushes but it doesn’t stop me anymore and I am happier for it.
    The whole point of this post is that I wish I had someone I could have talked to who could have told me in 10 yrs your gonna laugh and learn a lot and think how dumb it was to let this stuff prevent you from living life. So I wanna offer that help if anyone is needing it whether your struggling for support, don’t know how to live normally, or have questions on my treatment/strategies. Again, I wear make-up daily – have never been asked about it (wearing for 4-5 yrs) so if you’re a guy and maybe that’s something you wanna know about let me know. I don’t get on often but will try to more even if its to respond to DMs and comments. If there is one thing I have now in these 10 yrs is experience and I would like to help if I can, maybe I cant and that’s fine but if this resonates at all with you feel free and reach out.

    Hi Sportsfan

    I 'm really happy for you that your rosacea doesn't stop you anymore. Thanks for sharing your experience. The only thing you probably should be careful with, is advising everyone else to do the same things that have helped you. It may have come across even more kind, compassionate and well-informed if you had accompanied your personal experience and general advise, with the foot note that some readers here have absolutely debilitating gradations of this disease. That is one thing that really needs to be hammered into people, even members of this forum; that Rosacea is just an umbrella term for vaguely similar symptoms. Which can vary enormously in nature and severity. As you know, some people have it so severe that they are burning alive from the inside when doing those sort of everyday life things.

    It is a lovely message you give, and I can personally agree with the gist of it. Having suffered from severe facial flushing and burning for 20 years now, I also came to a point where I no longer wanted to experiment or try new treatments, and no longer wanted to be swallowed up whole by this disease. Instead I also focused on my normal life, work, family, friends, travels.

    But you must understand that the variations between rosacea cases can be gigantic. Even though rosacea is not a terminal condition in itself, there are members here (myself included for long periods of the year) who have tried all treatments, got worse from IPL or laser, use a ton of medication and are basically no longer treatable. Who literally cannot get out of their airconditioned house, or away from a ventilator. Which has nothing to do with mindset (!) or optimism or not. It can be strictly a physical need for controlling of their triggers. As everyone knows, with severe rosacea the triggers can be all-encompassing.

    So you need to be aware that your advise, no matter how well intended, can tick off or downright hurt some other members here. I'm not one for political correctness myself, but this does not come across right to me either. I'd want to compare it with me having cancer for instance (I know, a very different type of illness) and writing on a cancer forum, telling members that truly, if they want to get through it all they just have to forget about their cancer and go out and do whatever makes them happy. That would come across a bit ignorant, or naive at best, because I would not consider the situation of those patients worse off than me. People who don't have the energy to leave their beds, or who are in such pain that they simply cannot do the things I so happily and contently described to them.

    Your message, well intended for sure, goes past the fact that some people here simply cannot endure the sun or warm air, or shops, or holidays. Because they are in such facial pain from nerve damage and flushing. You shouldn't take their words as a personal dig at you, or feel insulted or offended by it. Although I understand the general message; do not let your life get dictated solely by rosacea. But it is not always a matter of mindset, whether or not people can go to the beach and spend evenings out with friends. Let alone having a career or going to bars & sporting events all the time.
    Last edited by nat007; 1st February 2020 at 04:53 PM.

  8. #8
    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by Mistica View Post
    The crazy idea a number of people have, (including you it would appear) is this condition is purely cosmetic. Medical schools are devils for perpetuating this myth.
    It has to change. This is a physical condition and the range of debilitation differs for everyone.
    Finally, I do admire you for wanting to help people, but I had to add some balance to your perspective.
    To me the crazy idea is that rosaceans don't want to do something about this themselves and come together into a cohesive patient advocacy group for rosacea. They want the cure handed to them in a pill or topical. I have tried since 2004 to bring rosaceans together and instead rosaceans prefer and support the NRS with donations. RF has dwindled to a handful of posters compared to years ago when hundreds posted (Members: 38,189/Active Members: 144 as of this date today) not to mention the 1300 plus members of the RRDi who are basically silent when it comes to posting.
    Brady Barrows
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  9. #9
    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by sportsfan81 View Post
    We are all on the same team and prob should support BBarrows more too on the R&D side, but we all just want to have a better life. I found a way and I want to help anyone who can resonate the same.
    Thanks for the plug for the RRDi. Go team. Join the RRDi

    As for the merits of what sportsfan81 has done in starting this thread, let's focus on the fact that he came back and posted an update. If only half of the 38K members in RF came back and posted I doubt if the servers for this forum could handle the load. So, sportsfan81, thanks for your post. I see you have retracted your initial 'cosmetic solution' and clarified what you meant. And even the experienced posters in this thread acknowledge you meant well and I give you the benefit of the doubt that is why you posted this thread. Your post touches on a post I wrote about the Placebo/Nocebo Effect in Rosacea, particularly this sentence, "Understanding the psychology of treating rosacea can better help you find a way to control your rosacea, since emotional pain can be a huge factor in your life." Also in a similar vein, L Boole wrote an article [published Nurs Stand. 2010 Nov 17;25(11):33.] in entitled, I live with rosacea without feeling depressed about it (article no longer available). Or this quote:

    "The problem of stigmatization and psychosocial distress in rosacea is still underestimated, and it is important for clinicians to acknowledge the psychological impact of this disease to stimulate them to introduce more comprehensive treatment. Psychological support may be considered as an additional therapy to medical treatment as it may improve patient’s outcomes." Source

    There has been a great deal of papers written about psychology and rosacea. So sportsfan81, you are spot on but take the criticism of our mature rosaceans in RF so that you can be an even better helper in the future. And please, join the RRDi.
    Last edited by Brady Barrows; 2nd February 2020 at 01:48 AM. Reason: More to post
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    Quote Originally Posted by sportsfan81 View Post
    I am saying find your treatment and what works and dont let it keep you in this strict bubble of mental anguish and disablement.
    Coping methods are personal. It is admirable that you re-evaluated yours and decided what needed to change to better enrich your life. But, do not write in a way that suggests others are not trying to find treatments + choosing to be trapped in a bubble, mentally or physically. Pain + chronic illness are something I've come to respect. It's an easy bias to think, "it's the patient's fault" or "the patient can do better", or "I did the right thing and you probably did the wrong thing". I will likely forever mourn what this condition has taken from me, and I don't know that's a process that can be "rushed" or "snapped out of".

    "The whole point of this post is that I wish I had someone I could have talked to who could have told me in 10 yrs your gonna laugh and learn a lot and think how dumb it was to let this stuff prevent you from living life." => I think this unnecessarily minimizes what others might be going through - whether it is self-consciousness over appearance or extreme physical pain. Actually perhaps you're pushing your own experience away + lessening your ability to sympathize w/ others having the "same" condition.

    I think like Mistica mentioned, it's important to just keep reminding others, that rosacea can be a cause of disability. This is under-recognized, and people seek other diagnoses actually because of the false idea that rosacea shouldn't even be able to do this.
    Last edited by laser_cat; 2nd February 2020 at 07:33 PM.

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