Amanda Thorpe

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Everything posted by Amanda Thorpe

  1. Well what food could I bring from ole Blighty? How about the ever traditional chicken tikka massala with the unnaturally bright red sauce thanks to colourants, or chinese sweet and sour chicken with chow mein and MSG from which its flavour comes, or fish and chips with Pollock as cod is dead. Please supply me with Fritos instead as I ain't had such a crunchy yet greasy snack in years. I will bring just for me (no gastro) a chilled, oaked bottle of Australian chardonnay that I will drink straight from the bottle with a straw once someone with working hands opens it for me. Post chardonnay m hands do a mean impersonation of plastic barbie hand or floating manaquin hands or I can play the pick it off the floor game where I flounder like a flapping seal whilst trying to pick up an object, any object off the floor. Well the food's done and entertainment but wait I can't come...I can't stay awake that long and oh I must medicate! You all have a great time and someone snowshoe for me. I can't think of a better bunch of people I'd really like to partay with. Here New Year's come and gone it's now 2009, full of fun and possibilities for all us extraordinary people with equally extraordinary family/friends surrounding us. Amanda
  2. Hello Looking4answers Remember the original and best black and white film "Invasion of The Body Snatchers? You closed your eyes, fell asleep and crossed over into the world of...SCLER O DERMIA!! If you listen carefully you can here the twilight zone music playing in the background, it builds to a crescendo as realisation dawns, you have become one of...THEM...a SCLERODERMIAN!! You're in with the in crowd now baby so roll up for the magical mystery tour, step right this way! Amanda *The concept and phraseology of sclerodermia/mian is reproduced here with the kind permission of the owner *If you don't have a sense of humour go find one as it is the more effective at warding off the symptoms of scleroderma than garlic *Happy New Year to all
  3. Shelley's just started a post about natural pain remedies, you might pick up info from that thread. Amanda
  4. Also welcome urangel! Still awaiting a definite diagnosis eh? Let us know when you get it! Amanda
  5. Pain meds all come with a warning label and I think that pain should also come with a warning label that reads "won't kill you but you may kill a passerby just because they passed you by." I used to use distraction methods when I had a mild to moderate migraine by listening to the radio with earphones on and the volume down very low. After a pain injection for a severe one my husband would read our favourite book to me whilst it tapered off and that would help. As already acknowledged distraction doesn't work for severe pain or pain in the wee small hours when you want to be viewing the inside of your own eyelids, these are my times for medicated relief. Even if the pain is only lessened that's good enough for me because I need a bit of psychological relief which comes from knowing that I can still treat the pain. Mind you I have had that awful heart stopping moment of realisation that I am well and truly in trouble when the strongest pain relief available to me it isn't working this time. To me the most natural approach to pain is accepting that pain in varying degrees is something you are going to live with for the rest of your life so that you can then begin to assimilate pain into your life rather that it assimilate you. As part of your life it becomes something to manage and cope with and we employ various strategies in order to do so whether medicinal, herbal, physical, psychological, religious and the like. The only thing that does not work is denial oh yes and trying to keep it to yourself. I accept that I have varying degrees of pain all day everyday and what helps me is knowing that there are lots of others living the same thing and that I can share with them in this forum. To read about another's struggle with pain and their management of it assures me that I am not the only one doing this day after day. For me what works is acknowledging the pain, accepting it, sharing about it, partaking in others sharing about theirs and finally taking pain meds when I think I need them, being fully aware of the effects in the long term but nevertheless making my own informed consented decision to use them whenever I feel it appropriate. Having started at the point of acknowledging I will have pain my use of pain meds has lessened as I no longer expect them to take the pain away completely and an happy to just have a degree of relief. I would be open to herbal/natural alternatives, I've just never heard of any that actually work. I'll continue reading this thread in the hope of picking some up. Amanda
  6. Hello I don't have any info on vit c/d but no doubt someone here will. I wanted to say sorry your blood results are what they are and yes it is all a bit overwhelming in the beginning. There's so much broad info on the internet that it's hard to take it just in the context of your own situation. You are definately moving in the right direction seeking info/experience of others and I trust they will soon come in with answers/suggestions regarding the vit c/d query. Take care. :) Amanda
  7. Sorry Jefa that would be logical. I've never been to Oklahoma although I did live in Illinois and Texas for 10 years. Amanda
  8. Well I thought I'd share the deep psycological significance of my current screen name of ohboyoklahoma!! You see at college I studied theatre studies which involved learning about the great theatre practicioners one of whom set the foundations of the method later made famous by the Lee Strasbergh studio the rest is history. Such a background left me with a thirst for great dramas with gritty dialogue and smouldering performances all of which I did not find in my favourite film of all time Dirty Rotten Scoundrels starring Michael Caine and Steve Martin. Steve Martin plays Ruprect described as the monkey boy. We see him in an orange suit with the trousers too short, socks too high slicked forward hair and an eye patch, you get the picture. He sits perched on the bed next to a toilet with a large tyre hanging from a rope where he has been playing with his pans again. He walks with knuckles scraping the ground and utters in a nasal tone mother not mother at every femail. Having been told he is being taken to Oklahoma he grabs his copper pans bangs them together and proceeds to run around the room shouting oklahoma oklahoma oklahoma oh boy oklahoma. We are told he'll enjoy the wide open spaces as he loves to run and run. The film is an oldie but a goodie, hilareous without being offensive and one of my family favourites. Of course I would have to bang my pans to oh boy scleroderma scleroderma scleroderma!! Amanda
  9. Hello Lisa Welcome to this wonderful forum! Sorry you've been having pain for a few weeks in different places. It is possible that the pain is sclero related, it does cause pain in joints, hands, feets, back etc. Having said that it could be totally unrelated. The difficulty with where you are is that until sclero declares itself it's easy to think every ache/pain is it. Ring you rheumatologist for their considered opinion as if it is sclero the sooner treated the better. What is in your favour is no internal involvement to date, you already have a rheumatologist on hand and now you have this forum :) where you can ask what you need when you need. Let us know what happens and take care. Amanda
  10. Hello Jeannie Yeah what's with the sweaty feet? Not that my feet sweat you understand, I's a lady, they just glisten enough to require sock changes throughout the day. I won't say how many times as I is a lady and a lady never tells. Purr I was suffering foot cramp something chronic, at one point it was in all toes on both feet! The scleroderma nurse told me it was being caused by the Raynaud's. I had been strapping toes together in a desperate bid to keep them still to no avail. Now I just warm them up and the cramp goes. I had no idea Raynaud's caused cramp and I now do the same when I get cramp in my hand by putting gloves on and within a few minutes it goes. She also said vitamin e in high doses would help the cramp. Excellent point to make Jeannie! :) Take care. Amanda
  11. Hello Jetta Welcome to this forum, it's a most excellent place to be! I don't have this problem but picking up on one of the other posts, what about a goopy cream and gloves left on overnight? My hands peel and I was going to try this but with erythromelalgia my hands would get to hot. I really enjoyed reading this thread, what with the do do and crack cream...like being in the school playground again! I hope you find relief soon. Take care. Amanda
  12. Hello Georgette I use a sports physio who is a personal friend and after she's done my calves they are bruised and if she does my shoulders they are tender for days so much so that I need pain relief BUT she warns me first. I know exactly when it's going to hurt during and after. I think the after effects could be normal but your guy should have told you what to expect and should communicate with you whilst doing the physio. Having said that there's no way of getting around the fact that physio is painful during and after. Hope this helps. :( Amanda
  13. Hello All Coming up to holiday I hope you are all doing well and here's an early "Happy Holidays!" Now to the crux of my post, Cellcept. I have been on it for 14 months now and have always thought I had no side effects, however, I am now wondering if it is causing me frequent debilitating headaches. I, in reluctant agreement with my rheumatologist, am stopping the Cellcept for 3 weeks to see what happens with the headaches. Has anyone experienced an increase or the start of headaches whilst on Cellcept? I realise they may be totally unconnected but I'm now desperate to pin the headaches on anything so I can make them go away! :( If it does turn out to be the Cellcept I will be put on methotrexate, which I know nothing about so in that eventuality guess what my next post will be about!! Take care. Amanda
  14. Hello Wendi I've just read this thread and wanted to say what a great job you are doing, sorting out the best care for your mum. Remember that you can also post here for support for yourself which youy may need being as you're giving out so much to make sure someone else is cared for. Why ever you post keep doing so and take care. Amanda
  15. Hello Aaron Firstly welcome to this forum! :) You will find support and understanding because even if someone is not familiar with your illness, I am not, we are all familiar with living with an illness that has fundamentally restructured the way we live our lives. I have actually heard of faciitis as I was diagnosed with this but not EF so I googled it for some info and it sounds unpleasant and well painful. I found nothing about the white blotches so can't actually help with the crux of your query, sorry. Needless to say there is info on this site about EF on the home page, under medical, under skin diseases where there are personal stories about others with your condition, it may be worth reading their experience if you haven't already. No doubt someone will chime in with better info for you. Just remember you're one of us now so we expect updates etc! Take care. Amanda
  16. Hello All Thanks for your kind replies even if you have given the wrong answers! I suspect that blaming Cellcept may be a long shot :angry: but I am going to go the whole 3 weeks just the same. Thanks Janey I don't have lung involvement but only found out MTX was bad if you did from this site! I'll keep you informed. Thank you one and all. :D Amanda
  17. Hello Erin :) I was told by my then doctor, some7 years ago, that stomach ulcer pain can appear between the shoulder blades. I make reference to an ulcer as he thought that's what I might have had at the time but I assume therefore that stomach caused pain can appear between the shoulder blades. Heart attach type pain can appear in unusual places such as in the jaw or neck, my mother experienced this with her first attack. You could try reflux meds meantime nevertheless mention it to your doctor. Take care. Amanda
  18. I agree with the findings except one: It says lots more of us what got this ssc also got no good schoolin we's a bit fick I fink it saying but my readin aint good so may of got it wronged. I thoroughly refute the allegation that there is a correlation between sufferers with SSc and a deficiency of educational achievements. Make your own mind up! AmAnDa
  19. Hello Kamlesh When a new symptom appears it's difficult to determine whether it's scleroderma or A.N. Other at fault. Personally I hold scleroderma responsible for everything, if you view the footage carefully you can see sclero hiding on the grassy knoll. I have had unusual eye problems, unusual as in not had them before, and as they occured during winter I don't think they're allergy related, unless of course I am allergic to myself! Possible I suppose as my husband is allergic to, now get this...his own sweat. I am glad you have found relief though and my sympathy to those who have ongoing eye issues, it's extremely unpleasant for a short period so I can't imagine what it must be like on a continuous basis. Take care. Amanda
  20. Hello Erin :) Long time no talkie! Sorry you're dealing with this, it makes you feel so uncomfortable and all you want to do is sit still sort of curled up. I have constipation, lack of appetite and extreme sleepiness when bactirial overgrowth is around and it's just this week come back to say HI! :angry: I hope you get an answer as to what it is and accurate treatment. Take care and don't be a stranger, just strange! Amanda
  21. Hello All Itching is part of this disease and my rheumatologist said it stops when the disease becomes inactive. Great something to look forward to...in 3-5!! ;) I use creams, sterioc ointments, antihistimine and a reflux med as its side effect counters itching. All help but it never goes away. I might try the oatmeal bath, I wonder how much to put in? Amanda
  22. Hello Autigerfaninatl Welcome to this forum where loads of people have info to share regarding blood test markers and their relevance in relation to diagnosis. I don't know about the antisclero-70, what I do know is that it takes more than blood work results to rule scleroderma in or out. For example people with scleroderma can be ANA positive and have high positive numbers and feel great. They can have low positive numbers and feel awful. In addition 5% of people with scleroderma have a negative ANA so it's neither high or low and they fair the same as those with a positive result. :blink: Having looked at this issue myself my personal conclusion is that bloodwork alone means nothing and does not even tie in with how someone is feeling. In the beginning we want factual information the difficulty comes when we realise that the application of the factual information does not necessarily indicate anything or at least what it's supposed to indicate dependant on which doctor you talk. :huh: Someone will no doubt explain the scl70 to you so you can make up your own mind. Just don't put all your eggs in one basket as a result of one test. ;) Take care. Amanda
  23. Hello JG07 I am sorry things are so tough for you right now. You're getting good care and no doubt have loads of family support. I was on prednisilone low dose, for EM, for a number of months. You are right they don't like giving it in cases of SSc but they do use it. I hope you are able to make the best decision for you, it's a hard call with so many variables beyond your control. I am sorry things are progressing as they are for you, please let us know how things go Take care. Amanda
  24. Hello All I am sure I read on a site I can't now find that detailed loads of personal sjogren's stories that in the beginning things can swell up and be painful. My question is this, my eyes have been painful for weeks, feels like it behind the eye, and tonight they are swolled, particularly the left which is of course more painful. They are not dry the left is almost filmy, the vision won't clear. Reading close up is weird as it looks like the print is shuddering. According to a recent eye test my vision is perfect as is the health, no glaucoma. Any guesses? Thanks. :)
  25. Hello Melissa I don't know anything about your condition or the suggested meds. What I do know is that you are in the right place to find support because even if some of us may not be familiar with your illness and treatment most of us are familiar with the benefits vs side effects debate for medication as well as concerns regarding our long term plans and whether they may be thwarted by our illness. I am glad you've found us and hope we can provide the support you need. Thank you for sharing with us. Amanda