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Frustrated and Angry

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#1 uknlv18


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Posted 31 March 2011 - 09:59 AM

Hi Everyone,

Well I had an appointment today with my new Dermatologist and I thought I was going to be given some type of autoimmune suppressent to help with my Lichen Sclerosis. I have had Lichen Sclerosis for 6 years now, apparently it was caused by the Scleroderma but that was never diagnosed. I have been going regularly to a Dermatologist since this all started 6 years ago and was told that I needed to lose weight at every visit and if I had not lost enough the doctor would be annoyed with me. I asked if it would help with my LS if I lost the weight, and was told no it won't affect it at all but you will feel better. And when I why I have constant flair ups and pain I was told to go home as there was nothing they could do, needless to say I switched Dermatologists, thinking that this would help. Well after three years of being told that what I was doing was he right treatment and that the ointment I was given is the only thing for it, that I would just have to deal with the monthly flair ups and constant pain the rest of the time, I was diagnosed with the Scleroderma.

I was then referred to a new Dermatologist who works in conjunction with the Scleroderma doctors as skin disorder is so common in Scleroderma. He examined me and said I was not bad enough to need medication and that all this time I had been doing my LS treatment wrong. I had to apply the cream for two weeks, then a week off, then two weeks and when I had a flair up I needed to apply the cream for two weeks even if the symptoms subsided. If I did this he was fairly sure that I would not have many problems with my condition, I was not applying the treatment long enough to get down in to the lower skin. Well imagine my surprise as I had been told that I had to limit my application of the cream because of the steroids, I told him this and he said normally that is true but with Scleroderma the skin thickens underneath the top layer of skin and the steroids help to thin this, which is good.

I suppose I should be thrilled that this may be a big help and keep me from having constant pain and bad flair ups every month and I am really, I am just so angry that no one else has ever said this in the last 6 years. I lost my job due to these problems and have not had a day in 6 years without being in some kind of pain from the Lichen Sclerosis, it is just so frustrating that the other doctors couldn't think to try this and see if it would help instead of telling me I was too fat, just deal with it, it happens sometimes!

Sorry for the book, I am just so angry because this has really put a wrench in my life for so long and to think that something so simple may of made it better. I suppose I could say it may not of helped but to have the chance to try it would have given me so much hope and saved a lot of heartache and depression. Thanks for listening, rant over.

On the upside I have been asked to help cater a party for a friend, which I find really nice as she said I am one of the best cooks she knows and it would be great if I could cook something up for her party! I need suggestions for cold finger foods if anyone has any really great ideas!


#2 Jeannie McClelland

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Posted 31 March 2011 - 01:12 PM

Hi Jean,

Boy, I can understand how frustrated and angy you are. I was in the same boat to some extent. I was diagnosed as having asthma (I don't) and told to get rid of our dogs and everything would be fine (I didn't). Then for 2 years they treated me off and on for pneumonia, completely missing the fact that the shadows they were seeing in my lungs were pulmonary fibrosis. Plus they missed a diffusion defect on a PFT they ordered~ The high ANA was ignored. Sigh~ I still get angry when I think about the lost time to starting the proper treatment. I try not to think about it, wanting to move past the anger, but every now and then I'll another story about one of us having gone through something similar and bang! I'm grumpy again~

Now, cold finger foods, eh? I used to make mini-quiches (usually cheese) because they are good at any temperature and especially nice at room temperature. Or how about cream cheese mixed with tinned jalapeno peppers (or chutney) and piped on a Ritz? Cherry tomatoes stuffed with highly seasoned bread crumbs and then baked and allowed to cool are good too. Thin slices of baked ham with a dab of strong mustard and then wrapped around a piece of pineapple - you can even cut strips of the ham and wrap them around tinned pineapple chunks for very small bites. Quail eggs from a Chinese market make nice mini Scotch eggs or even deviled eggs. If you could slip a baking tray into the oven for a few minutes, water chestnuts or dates wrapped in bacon and grilled are good when reheated. Gotta stop now and go find a finger food!
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#3 Joelf


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Posted 31 March 2011 - 01:48 PM

Hi Jean,

Well, at least you have had a positive result from your new dermatologist; even though it may have taken 6 years to get there!! ;) It must be infuriating to think that this could have been resolved much sooner and I can understand the frustration you must be feeling; the only thing is that now hopefully your LS will improve and you won't be suffering such horrible pain. I'm really glad that there's some light at the end of the tunnel for you!

Cooking for a party is not really my forte and Jeannie has given you some wonderful ideas; my mouth's watering just reading about them. What about some cold pasta to be served up with salad? I know it's not exactly "finger food" but pasta always seems to be very popular at parties (soaks up the alcohol, too! ;) ) I realise this will probably date me horribly, but what about vol-au-vents with tasty fillings? (circa 1970? :lol: ) Unfortunately it says a lot about the sort of parties I go to!! ;) :lol:

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#4 uknlv18


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Posted 31 March 2011 - 02:58 PM

Thanks guys and also thanks for the ideas; so far I am going to do two types of pasta salad, a potato salad, tomato/mozzarella/basil tarts, and I saw this on a program once so gonna try it before I commit; you take slices of regular bread, cut off the crust, press that into a muffin tin, brush with butter and bake and it makes little crusty pouchs and was thinking of filling them with mushroom/cream cheese/and some salsa. But I need more so thank you both so much for the ideas, keep 'em coming, my brain is not what it used to be so I need all the help I can get! hehe


#5 Amanda Thorpe

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Posted 31 March 2011 - 04:05 PM

Hello Jean

I was initially misdiagnosed with something called necrobiosis lipoidica (NL), a condition associated with diabetes, neither of which I had. They gave me a steroid cream and offered me cyclosporine which I declined because of the side effects. When I look back I am convinced that a particular doctor should have known that it was not NL but scleroderma and if they had I would have received treatment 6 months prior to my actual diagnosis. In addition when I first saw a scleroderma expert they commented that declining the cyclosporine was a good thing because of the effect it can have on the kidneys and as all of us with scleroderma know we need to by kind to our kidneys! Interestingly I carried on using the steroid cream, for itching, assuming that as I had hard skin from the scleroderma I wouldn't need to worry about skin thinninghowever :emoticon-dont-know: I do not recommend this type of assumption.

Sorry I can't help with the finger food as I tend to do sit down meals or buffets, mind you with summer coming on I am looking forward to barbeques and yes summer is coming to the UK...or else! :lol:

Take care.
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