1st January 2010 10:48 PM
Hmm... well, I just thought I would make a log to track my "progress" and also get some of my thoughts and frustrations out while hopefully improving and moving forward in the long run even w/ all my set backs and down falls etc. Sorry if this is a little too "raw" but there is an undeniable emotional/mental aspect to rosacea and I hope it's okay to express and acknowledge that here.
It is so easy to say to other people that there is hope and to not give up when they are down and out about the torture and tribulations that come w/ rosacea and other skin issues but yet when it comes to myself I just see no hope some of the time. Well beyond that I sometimes see no point in trying as there is something incredibly wrong and screwed with my skin; both vascular and also outwardly, and I feel like it will never even be semi-tolerable or normal looking. I forget what it's even like to just do- to just act without thinking, to eat without thinking, I can't even sit here at the computer without feeling extreme tension and burning in my face- and while I can't see it at present I know it's red red red. How is one supposed to have a normal life when they burn and feel intense pressure and tension just from sitting at a computer yet alone anything actually straining on ones physical or mental aspects??
I have to monitor my every move and keep a glass of ice water permanently attached at the hip; I'm constantly stressed about the state of my skin and it's unhuman state, not to mention food/temperature/air flow and how it's effecting me. My face constantly feels burning hot and I just see no light.
To say I've been depressed over all this is really an understatement. I look at old pictures of myself and it almost brings me to tears. I don't understand how one can have normal skin one year and the next be dealing with something like this. I know it is technically my fault which makes 100x worse, knowing I'm responsible for this. I don't know why in all hell I would ever apply a steroid cream on my face especially for long periods of time and not a day goes by that I don't wonder why in all whys was I so stupid and careless. Obviously at this point I am not dealing w/ "steroid rosacea" as it would of gone away by now- steroid "induced/triggered" rosacea for sure but again, it is my fault. The year before last I spent my time on the beach constantly, this past year I couldn't even step outside my door into the "heat", that of which I've been accustomed to my entire life, without flushing intensely within literally seconds.
And to be honest I spend alot of time thinking about everyone else here with alot of admiration as I don't know how the rest of you all do it, and are able to go out and function when your unable to control your environment/food etc. as such a thing for me is close to impossible 9 days out of 10. For that reason, I just have to guess that most people must have mild rosacea, or very under control rosacea, which I know is a major inconvenience, but very different from moderate/severe rosacea. It amazes me though; I don't know how other people who are dealing w/ moderate/severe cases are able to function at all- and by that I mean "hope" wise, as my hope has been depleted to very low levels. And when I try to categorize myself I don't really know- I would not say truly severe yet, as I don't want to discredit the word or use it lightly, and my heart and soul goes out to those who truly are or were severe as I know it must be debilitating beyond belief- I would say though that I am between moderate/severe, and in the really good days sometimes mild/moderate- I imagine though in a few more years if things continue to progress as they have been it will definitely be severe so I just really hope I can stop that progression and turn things around.
Right now I sometimes question if I'm on the right path, if there even is a "right" path- or sometimes if there is a path at all or is all lost and I'm just completely screwed and hopeless? I feel like in order to conquer this disease I need to be very wealthy and also have a optimistic and persevering demeanor- that of which in truth I do not most of the time, and I'm also not wealthy whatsoever as I'm still a freshman in college and no prospects of making good money for quite a few years, and to even make good money and function well in my work I would need to be able to have the rosacea beast, as Judworth so fittingly puts it, under control.
Also, I feel like I have so many conditions- rosacea, acne, pd, sd, who knows what else- that all cross and get together and plot their sanatic reign over my face. I wonder sometimes if possibly I'm sick but I don't feel sick. Could there be something wrong with my blood pressure, circulation?? I really dont know but it seems unlikely as this is just a recent problem which was for sure triggered full throtle by that stupid stupid evil steroid cream but has sense then evolved into the beast it is now. Blah.
Why can't I be worrying about normal things?? I wish so much that my biggest issues were guys/school/friends or the occasional pimple of doom, not trying to be funny, this is just what most people my age biggest "problems" are, my own sister included. She cries to me about a pimple that I can't even see unless I'm 2 inches from her face and then has the nerve to tell me I shouldn't let this "hold me back" and that I "just need some sun" . Please walk a day in my shoes!! Lord- okay, that's enough on that but it is just so hurtful when my family/friends say things like this and belittle me even if unintentionally, telling me things like I shouldn't let it hold me back and how they are doing so and so yet have a pimple and it doesn't matter. Okay, a pimple or two and constant intense burning/flushing/pressure and the very red/inflamed/irritated face that comes with it are very different!! I would be ready to conquer the world if I was in their shoes, and I just hate how non-understanding alot of people are. I think rosacea is one of those things where you truly have to go through yourself to understand just how extreme and life affecting it can be.
Anyway, this is the end of my huge rant. I'm glad I got this alll of my chest as I've been really down lately and worried about numerous things and the future of my skin and where to go next etc. etc.. My face has been burning/flushing ALOT, its burning really bad as we speak and I just cannot even see the tunnel yet alone the light right now but I hope things turn around again soon and more under control/tolerable.
Oh- also I'm thinking my diet may need some changes. I might want to try cutting a decent amount of the carbs I just don't know HOW to do that, I mean what do you people eat who are on a low carb or no carb diet??? I might make a thread asking that but I always feel like I'm flooding the board or something w/ one lined basic question threads so I try to keep them to myself.
Another thing I've been worried about- am I even taking enough remeron?? I take 15 mgs- it seems most people take 30 mgs, is 30 mgs more effective?? Also- I would really like to get blood tests taken for my vitamin/mineral levels and see if I can get my hands on some clonodine.
I am still very stressed also about skincare as my current cleansers drying me out but I have PD so I have to avoid SLS and then moisturizer is another monster of confusion too! UGH! Accutane has deffinetley helped, my pores are so small and no blackheads but at the same time I'm very dry, more red, and also burning/flushing more but then who knows it kind of comes in cycles for me. I'll see some improvement flush wise and have a few good days then I am right back to major deterioration w/ intense burning/flushing 24/7, and on and on the cycle goes.
I wish this was a more positive post considering its the 1st of the year but none the less I'm glad I got my feelings out. I hope my next post I have some better updates.
Last edited by bluesky; 1st January 2010 at 10:58 PM.
2nd January 2010 08:52 AM
For the low carb diet : I eat only vegetables (sometimes a spoon of rice, or potatoes), and a bit of fresh raw milk goat cheese (contains some lactose), but I have to be cautious because my seb derm flares with that. If I stay on this diet, I do not have any flushes (redness from cold/hot, effort, hot foods,... but not flushes occuring without any reason like it was before) and the redness on my face has tremendously reduced. I don't know the exact cause why I flare on carbs, I have IBS, candida albicans problem, and leaky gut. So this is surely linked to a fungal problem.
I eat meat most of the time, sometimes lentils, and fats (raw butter, non hydrogenated palm oil,... wich are saturated ones, and omega 3 oils). I have enough energy to go running, so it is ok I think we do not need so much carbs in the diet. My blood tests are perfect. I also take vit D3, magnesium, Betaine HCL and pancreatic enzymes.
Happy new year!
2nd January 2010 10:03 AM