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Amanda Thorpe

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Posts posted by Amanda Thorpe


  1. Hello Chefkat

     

    You sound determined, focused and mature enough to achieve what you want once you figure out specifically what that is.

     

    You're a parent at 24, everything else will be a doddle! :)

     

    You're no way a has been more like a not yet been but most definitely will be...whatever you decide upon.

     

    Sclero makes you determined and this can only be a good thing...you go girl! :lol:

     

    Take care.

     

    Amanda


  2. Hello Wohali

     

    There is no one test that can rule sclero in or out rather it needs to be a diagnosis resulting from the culmination of info that can include bloodwork. However because you can have a negative ANA and still have sclero bloodwork alone can't provide a definitive diagnosis. I have diffuse sclero and my ANA is negative.

     

    With CREST/limited sclero the skin tightening is usually limited to the extremeties with diffuse it travels to the upper arms, thighs, abdominal wall and chest.

     

    At diagnosis I had skin tightening on feet, calves, thighs, abdomen, hands, forearms, upper arms and shoulders but negative ANA. A biopsy confirmed the diagnosis made upon examination.

     

    There is a list of sclero experts worldwide on this website and it may be worth seeing who is near you if your current doctors have no experience of this disease. You need to make sure you have all appropriate tests, the results of which are viewed by someone experienced with sclero so that you can be given the most effective treatment plan. Please don't plod along with a doctor who is not experienced in this disease.

     

    Hope this helps.

     

    Amanda


  3. Hello Lizzie

     

    I had a manager who tried to bully me, as she did everyone else, a number of years ago before I was ill. It's so hard to deal with daily and even harder to confront which I did officially. Use all weapons in your arsenal and if that means envoking DDA do it, level the playing field. We forget that most of our days are spent at work so when much of that time is negatively impacted by the behaviour of another it's a big deal :angry:

     

    What's with other people saying this/that is no worse or has improved when you know quite well it has not?! Please tell me my skin colour has improved and coo. I still can't use my hands properly but hey their colour...

     

    People try to diffuse what you're saying to lessen it's impact without realising they can't. My mum keeps telling my sister her bald spots (follicular lupus) aren't noticable yet she now requires hairpieces to cover them, no amount of strategic brushing and hairspray will now suffice.

     

    It's like the emperor's new clothes...my skin colour, the bald spots, your skin tightening...people see something that's not there.

     

    Lizzie your skin tightening is progressing but the cellcept can begin to interrupt this process but it can take 3 months before it kicks in. As you know people's mouths can get smaller and their faces can be effected. I think the cellcept has prevented this from happening to me so may help you also.

     

    See how the hot then itchy develops as I realised I had erythromelalgia because I was more itchy when hot and more hot than a sclero sufferer with raynauds should be.

     

    By the way there's something wrong with you as a result of which you have a battery of symptoms some visible some not, some progressing some not.

     

    Amanda :)


  4. Hello Gina

     

    If they made sleeping an olympic sport someone with scleroderma would bag gold, silver and bronze. You can't fight it or work through it you have to accomodate it. Today I spent most of it asleep because my body would not let me do anything else, a crash and burn day as a result of too little rest and too much activity.

     

    Fatigue is common to everyone with scleroderma and some do find meds to help with it whilst others sleep/rest more in response.

     

    I have had the urine test for kidney function when in hospital, what fun it was.

     

    Take care and post as the questions come, someone will have experienced it and someone else will have a comment to make about it. :lol:

     

    Amanda


  5. Sorry for you predicament Ann, you sure have been given some great suggestions.

     

    Smurfette I love Grease, I want to see it now!!! as my day has been awful.

     

    Razz I loved Happy Days, Laverne and Shirley and Bewitched. National Lampoons anything!

     

    I also loved Mork and Mindy, well until it got really weird and they had a grown up baby. Planes Trains and Automobilies is a classic and what about Dirty Rotten Scoundrels, Steve Martin's funniest turn ever!

     

    Shelley-you funny lady.

     

    Amanda :lol:


  6. Hello Gigi

     

    Glad you've joined us!

     

    Swelling in the beginning of this disease is common, my hands and feet swelled, my feet so much so that I went up a shoe size! I don't swell anymore and never treated it as most was prior to diagnosis.

     

    As already stated make sure you are monitored and seen by doctors familiar with scleroderma.

     

    I'm on Cellcept and as with most drugs a few months is required before any changes are seen, persevere with your meds.

     

    I honestly don't think there is any way to get rid of the pain but it can be managed, different things work for different people, it's a case of trial and error. Just make sure the doctors take it seriously and offer you options as sometimes it gets overlooked as a symptom. As far as fatigue is concerned I do my best to work around it because you can't ignore it or work through it so I sleep when I have to whether that's 9am or 3pm or both!

     

    Be realistic about what you now expect from your body and keep posting.

     

    Take care.

     

    Amanda


  7. Hello Little Red

     

    You're right if any of us were a horse they'd shoot us dead for a dirty dog and then send us off to the glue factory! :lol:

     

    Good thing then that you're a valuable and valued human being, you're now allowed to carry on until body parts start spontaneously falling off. :huh:

     

    I have no experience of diabetes only scleroderma so others will post with info specific to your requirements.

     

    Glad you've found us and take care and look forward to future posts. :D

     

    Amanda


  8. Hello Leonidas

     

    Welcome to this forum where you'll find help and support from people living the disease. I have diffuse scleroderma, diagnosed just over a year ago.

     

    Please post any specific questions you may have and folk will chip in.

     

    Please also share any concerns you may have when you're ready.

     

    Take care and I look forward to future posts. :)

     

    Amanda


  9. Hello Mando

     

    Listening to the chest does not tell the whole story. For me it suggests diastolic murmur wheras echo shows no murmur. Presumably the same can apply to just listening to the lungs.

     

    Getting a baseline is a good idea, something to work from.

     

    I hope your low mood improves.

     

    Take care.

     

    Amanda


  10. Hello Ana

     

    Yes I think treatment can slow disease progression. Initially my skin involvement moved like wildfire but now I am into a year on Cellcept and it has slowed with no discernable side effects.

     

    At present the important issues as Shelley said, is that you're carefully monitored by a doctor profecient in scleroderma.

     

    Just think you may never need medication so mayl never have to take 2 horse size pills twice a day!

     

    Take care.

     

    Amanda


  11. Hello Peggy

     

    I am sorry you are having such problems, pain stinks :angry: . In addition to which you are going to have a new doctor, I hope it turns out to be a welcome change for you :) .

     

    I hope your time in hospital is as pleasant as it can be, what's the food like? Last time in hospital my husband and sister brought me food in. As far as the hospital food went, I was actually able to invert the dish with the "pudding" in it and it defied gravity staying in place. :huh:

     

    Take care.

     

    Amanda


  12. Hello Judy

     

    Are you whining...no...have something to whine about...YES!!

     

    Our hands and feet are basic to eveything we do so when we have issues with either or both the impact is really felt.

     

    Keep exercising as any benefit is worth it in the long run, sometimes long term thinking is hard when the pain is immediate.

     

    I hope things improve quickly for you and I agree this is a great group including you. :lol:

     

    Take care

     

    Amanda


  13. Razz

     

    I love parties! :) I loved entertaining especially the cooking. Of course there's all the prep work, cleaning, shopping etc so now it's all quite overwhelming.

     

    I hope your daughter's party goes well and you achieve everything you want to.

     

    Take care.

     

    Amanda


  14. Hello Lizzie

     

    Ah yes Iloprost or die.....hmmmm. I had it 6 hours a day over 5 days and at the time they said they were going to try 24 hours a day over 5 days in the future. I would not go in again for it unless it was over 24 hours as it was horrendous before! I say that now with potentially 3 ulcers as 2 more are declaring themselves, one today one for a few days but I had been ignoring it.

     

    They tell me that some people have no effects from the Iloprost but I say the plastic and or blow up patients don't count.

     

    Amanda


  15. Hello All

     

    Thank you for the replies they are as I suspected. ;) Today I have realised the same issue is happening for the left thumb in exactly the same place...twin peaks you might say.

     

    Razz I will ring my rheumatologist nurse tomorrow and sorry about your new arrival.

     

    Lizzie the hospital offers this service I am just not good at using it! I will ring tomorrow and no doubt be told off for doing nothing for 2 months.

     

    PrinB how weird ours are so similar.

     

    Well I lasted a year without any so that's good going. My dread now is that hospital will want me in for a week for Iloprost infusion to improve circulation, I still say never again!!

     

    It's funny because in the beginning I became fixated with dread at the thought of certain symptoms of which ulcers were one but like the other symptoms that appeared despite the dread...ulcers...oh well. :lol:

     

    Thanks again and I'll let you know what the nurse says!


  16. Hello All

     

    I know you can't make a diagnosis, will get rheumatologist to end of Nov, I am just seeking opinions meantime.

     

    My right thumb near the tip has been unwell for 2 months :angry: . At first I though I had cut the nail too short as right on the outside corner where the nail grows up the problem lies. It was as if I had an ingrowing nail which I cut/filed but nevertheless the site is always red, inflamed, sore and every few days...pus and very painful...yuck. There is definately no nail ingrowing and yet the symptoms continue.

     

    I've never had an ulcer and know lots of you have, sorry, so could you give me your considered opinion as to whether this sounds ulcerish or maybe just infected. :blink:

     

    Thank you in advance. :rolleyes: :)

     

    Amanda


  17. Hello Celiesblues,

     

    Sorry your appointment has left you with many questions, perhaps writing some down for your next appt would be helpful and taking someone else in with you to remember the replies. My husband always comes with me.

     

    Yes Sjogren's is an autoimmune disease.

     

    Keep us posted and I hope you get some definitive answers after your next appointment.

     

    Take care.

     

    Amanda


  18. Georgette

     

    My hands are very similar to Razz's except I would say hers are worse. I did ask my rheumatologist about this and he said it is possible for them to return to normal, however, the contractures can damage the joint. If the skin softens you may/not get normal hands back. Like everything else no one can say for sure!

     

    I always assumed that if the skin softened the movement came back so was rather surprised to find out otherwise. :blink:

     

    Amanda


  19. Georgette

     

    I meant to say that the first sclero sufferer I met was diagnosed 25 years ago. Her mobility was back to normal as was her skin but she is on dialysis having had renal crisis with the early sclero and she still has fatigue. Having said that she's a busy girl even travelling abroad with work frequently. You can most definately improve even if symptoms or the effects thereof of still remain.

     

    Amanda


  20. Hello Georgette

     

    There is no cure for scleroderma only treatments for the symptoms and to try and halt progression.

     

    My rheumatologist said that the disease plateaus and then becomes inactive as opposed to actual remission. The initial activity period is usually 3-5 years when you get the initial onslaught of symptoms but further symptoms can develop after that later on down the line.

     

    I understand that the fatigue is supposed to get better as can some of the symptoms although flares happen.

     

    The difficulty with sclero is that everyone can be so different and it's impossible to predict how anyone will progress so we carry on regardless! :lol:

     

    Take care.

     

    Amanda


  21. Hello Cin

     

    I am in the Uk ond on our equivalent of your disability. Thankfully here it seems to be easier to get and they pay you straight away.

     

    The form, 50 pages long front and back asked for details about everything including going to the bathroom and what assistance I needed as my husband also gets paid as my carer. Although we laughed whilst completing it it was quite unpleasant to have to breakdown how much time my husband spent doing things like bathing me and dressing me, I felt like a total invalid capable of nothing but being this huge burden on society that needed paying as did the husband for looking after the huge burden on society.

     

    When completing the form remember to do it on worse case scenario, thinking of how you are on your worst days not your good ones.

     

    I hope you get it first time round, you've contributed to the world of work now you need it back through no fault of your own.

     

    Take care

     

    Amanda

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