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Amanda Thorpe

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Everything posted by Amanda Thorpe

  1. Amanda Thorpe

    In Pain, Feeling Confused and Alone

    Let me clarify...curly is IN. How do I know? I have it! Well but for my straighteners which I often ditch in favour of the diffuser to deliberately enhance my natural cur...it's easier than styling it straight. Liberate your natural curl and frizz!
  2. Amanda Thorpe

    How did you simplify?

    I'm all for this...but I have found to my expense that those I hoped would understand my efforts to simplify my life do not. Recently my husband and I did not go to the "knees up" after a family occasion, having already planned to take that time and do some much needed shopping. You all know the importance of doing what we can when we can, miss the chance and who knows when it will come round again. Unfortunately some relatives, close ones mores the pity, criticised us for it deciding they knew what I could do and when...of course it was what they wanted, we ignored it and would do exactly the same again. What I am saying is that in our efforts to simplify we will meet resistance and we have to carry on regardless. No one chooses to have this illness deconstruct their lives and we have enough to manage without having to manage other people's expectations! As Shelley suggests rethink your priorities, develop creative strategies to minimize stress while increasing happiness and satisfaction...for YOURself and your nearest and dearest...only! Take care.
  3. Amanda Thorpe

    In Pain, Feeling Confused and Alone

    Let's start a sclero revolution! Here you have permission to simplify, adjust your horizons and manage your "dis"ability however you like! Washed or unwashed, coiffured or au naturel...home spic and span or totally down the pan, you are beautiful and capable and so welcome here.
  4. Amanda Thorpe

    Scleroderma and Small Intestine Blockage

    Hello Kamlesh I am really sorry to hear this! That you can no longer hike. I used to read your posts that mentioned hiking, walking and so forth and marvel at a fellow sclerodermian who was so active, I am sorry you've had to give this up. I hope that you eventually enjoy your new activities just as much. Take care.
  5. Amanda Thorpe

    In Pain, Feeling Confused and Alone

    Hello All Excellent points made by Kathy! I call it adjusting your horizons, as soon as you accept your inability to do as before you can accept your ability as it is now, however reduced. I am an infrequent bather and hair washer although having my hair short and investing in the light weight version of the professional hair dryer my hairdresser uses has made drying my hair so much easier, nevertheless, it's not so much rinse and repeat and rest and repeat! It is most definitely whatever works for you is what works. Our lives may be a lesser version of what they were but we don't have to be lesser people. Less is more for sure! Take care.
  6. Amanda Thorpe

    In Pain, Feeling Confused and Alone

    Hello Jane How are you doing and how's your husband? This disease has its ups and downs, it waxes and wanes. Are you up or down currently? I'm down but that means I will go up...eventually! Take care.
  7. Amanda Thorpe

    How do you do dishes without a garbage disposal?

    Hello Shelley Greek yoghurt recipe in the sclero kitchen please! I love Greek yoghurt especially with honey. Thanks!
  8. Hello Kathy Here in the UK large supermarkets offer mobility scooters etc. Have you considered this? I have been a wheelchair user since 2007 and have used a powered wheelchair since early 2013. I am a disabled person, like it or not, because of scleroderma. You might find the occasional use of mobility vehicles enables you to do the things you need to do. Take care.
  9. Amanda Thorpe

    I have scleroderma.

    Hello Fcarpio How's it going? Are you managing symptoms vs side effects? Take care and keep posting.
  10. Amanda Thorpe

    Do I have Sclero?

    Hello Sirenadabat There are scleroderma experts around you but as you say not in your state. You know, the most certain way to get a diagnosis/get the all clear is to see an expert. I don't know if you can pay for this out of pocket, I am in the UK so not up on insurance etc. Take care.
  11. Amanda Thorpe

    Limited Systemic Sclerosis and Morphea

    Hello Laura Could it be hyperpigmentation? I had brown spots on my forearms when first diagnosed with scleroderma but they faded after a year. I think you can get pigment changes at any time though. I have posted pictures of morphea in our photo gallery, have a look at this list which includes others as well and see if anything looks familiar. I think it's worth showing your rheumatologist any changes even if we think they're insignificant. Let us know what they say when you do! Take care and welcome back, is there anyone around you remember?
  12. Amanda Thorpe

    In Pain, Feeling Confused and Alone

    Hello Jane Well welcome to the weird 'n' wacky world of scleroderma! You have already experienced the weird 'n' wackyness of it all, why oh why you were ever referred to seminars about how pain is caused (you already know...scleroderma!) and diversion suggestions (can't walk or boogie as disabled because of...scleroderma!) Pain management is not applicable for everyone with scleroderma simply because physiotherapy, acupuncture, and knowledge either are not enough or just don't work. For many people with scleroderma medication is the only option and if this is you there is no shame in it. Really it's no different from taking something for say reflux or pulmonary hypertension, pain won't kill you (which is why the medical profession usually pay it no mind) but it kills a quality of life! You are now among friends who understand you, your disease and so forth, as others have already shared, your unfortunate experiences with doctors/treatment are all too common. In line with your "mild" diagnosis, a member of this forum was told there are worse diseases than scleroderma. Now this member has had a kidney transplant after 5 years of dialysis, is being assessed for a lung transplant, has a whole host of other symptoms but hey...it could be worse...they could be dead! I spent my first year sat on my couch in my dressing gown wondering where my life had gone, now I have another one, having accepted the "death" of my life before scleroderma enabled me to forge a new life with it. Try to develop a keen sense of irony and allow your humour to grow, grow, grow as you make your way into the weird 'n' wacky world of scleroderma. Take care and keep on posting.
  13. Amanda Thorpe

    Do I have Sclero?

    Hello Siren Welcome to the forums, you can also see the list of symptoms in the video symptoms of scleroderma and you may also find helpful diagnosis of scleroderma and difficult diagnosis of scleroderma videos. Do bear in mind that it can take on average 6 years for a woman to achieve a scleroderma diagnosis and 3 years for men. Take care and keep posting.
  14. Amanda Thorpe

    Trying to get a diagnosis.

    Hello Yvette Welcome to the forums and I am sorry your mother died from scleroderma I am also sorry she lived with it. Scleroderma is not considered a hereditary disease but there is a hereditary form of it as Jo has explained. Bizarre eh? Not more bizarre than this disease though! I don't know how quickly your mother got a diagnosis but it can take years (average for women is 6yrs, 3yrs for men) to get diagnosed, there are so many possible combinations of symptoms and their presentation that you may have scleroderma and it may take a few more years before this becomes clear. Of course as a non medical lay person I have no idea whether you have scleroderma or not. Have a look at our videos, symptoms of scleroderma and diagnosis of scleroderma, and I also suggest seeing a scleroderma expert. I hope you find support on the forums and the information you need on the rest of the site. Take care and keep posting.
  15. Amanda Thorpe

    Oral Specialists

    Hello Amine Welcome to the forum and thank you for being such a wonderful support for your sister. I would agree with Judy in that your sister needs to surround herself with a medical team that specialises in scleroderma. Being surrounded by doctors in the know makes you feel less helpless and more able to cope with the demands this disease places on the body. I would also recommend she gets a referral from her dentist to the Eastman Dental clinic who specialise in all types of dental issues and as already said other members of this forum have been referred there themselves. You may also wish to consider having your sister referred to a scleroderma expert and there are a number of them in the UK, in particular the Royal Free London. Although your sister's main symptom may be dental, scleroderma is a progressive disease and she will lose nothing being under the care of an expert. In addition mycophenolate is only 1 of the immunosuppressants available and if your sister could not tolerate this drug there are others that could have been offered. The idea is to dampen down the immune system and prevent scleroderma from doing as much damage to the body as possible, you don't need to be seriously ill to start immunosuppressant therapy, the hope is that it will prevent you from becoming seriously ill. Of course there is no guarantee it will do anything of the sort. Your sister may also wish to consider some type of counselling, having a rare, incurable, debilitating illness is unsurprisingly a life changing experience, for the person with the disease and their nearest and dearest. I have had bereavement counselling myself and I think I had already had scleroderma some 5 years at that time. Some things you feel immediately and others creep up on you with the passing of time. If you browse the forums you will find many other discussions about the emotional impact of scleroderma and counselling. Although it's not for everyone you would be amazed the difference just talking to another person makes and it is something that we can do to help ourselves, we may not be able to stop the disease from ravaging our bodies but we can certainly do something to keep our emotional life in balance. take care and keep posting.
  16. Amanda Thorpe

    Stomach advice

    Hello Marc Thank you for the update and I hope you all have a fab summer (not talking weather) together. Sometimes you just have to roll with it, you are all together and that's the main thing to enjoy. Take care.
  17. Amanda Thorpe

    Advice needed about treatment for ulcers

    Hello Louise I am sorry! I have heard of the odd one or two having continuing symptoms but don't know for how long. I would guess your symptoms have now abaited and if not I wonder if the Iloprost triggered off something else? How are you now?
  18. Hello Heather Waiting for internal involvement and/or worsening symptoms can mean that the damage is already done by the time diagnosis is achieved, it also means treatment has been delayed which can contribute to damage done. I wonder, how else can sine/sans scleroderma be detected? Blood test results are only part of the puzzle, taken in isolation they can be spurious If skin involvement is the hallmark scleroderma symptom and yet even with it diagnosis can take years, how else can sine/sans be detected if not by damage done? . You'd think they'd be a better diagnostic strategy by now! As awful a diagnosis as scleroderma is, diagnostic limbo is even worse. Once it has a name you can treat it and can face it. Take care and keep posting. Take care.
  19. Amanda Thorpe

    Centromere Antibodies?

    Hello Bigprimmer Let me second what Jo has said, being someone with negative blood work and scleroderma. I have had scleroderma for 7 years and the whole time my blood tests, ANA & SCL-70 have been negative. During that time many people have visited these forums with positive blood work but no symptoms wondering the same as you, they never developed any. Take care.
  20. Amanda Thorpe

    Be Careful with disposable heat packets

    Hello Kathy I have never had to use heat pads etc but I do have ulcers. Did the doctor explain the connection, did the pads cause trauma that just never healed therefore being classed as an ulcer? Take care.
  21. Hello Heather There is scleroderma without skin involvement, really! Scleroderma sine scleroderma, scleroderma sans scleroderma are marked by the absence of skin involvement as only the internal connective tissue is involved. You most certainly need a scleroderma specialist if you don't have any tight, hard skin to flash about, mind you even those of us with tight, hard skin to flash about have a hard slog to obtain a diagnosis. Bear in mind I am a non-medical layperson and am in no way suggesting a diagnosis but if you do turn out to have sine (pronounced sin-ee) or sans please let us know as its quite rare. Of course whatever you turn out to definitely have please stick around! Take care.
  22. Amanda Thorpe

    Kidney Transplant Anniversary

    Hello Miocean Congratulation, I am mighty glad your first transplant was a success and continues to be. I hope that your lung transplant is also something we celebrate at year 4, 5, 6 etc. Take care.
  23. Amanda Thorpe

    Stress fracture

    I though that, in general, scleroderma makes us slow to heal? I have had the same ulcers for 3 year and counting and any trauma to my calves (skin still hard there) takes months not weeks to heal. Heather, I hope that you heal quickly, please let us know how you get on. Take care.
  24. Amanda Thorpe

    Chat Room "News" for ALL Forum Members

    Here are my thoughts... I think Susie and Jo have done, do and hopefully will continue to do a marvellous job hosting the chat sessions. I want to thank them for being there every time they say they will! Despite scleroderma and having lives outside of the ISN Jo and Susie reliably and enthusiastically host many chat sessions throughout the week so members can meet and talk in real time about anything, not just scleroderma. If current times/days don't suit here's your chance to say what does!
  25. Amanda Thorpe

    GI Testing Completed

    "Unless you have lived with something..." Shazzer's comment is true, so very true as it happens! Why then do we insist that we know how someone else feels and vice verse? Well most times the motivation is genuine, benign, to convey a sense of unity and dispel that sense of aloneness. Disingenuous motivation is to *pacify*, dismiss, minimise and this often comes from medical professional as is the case here. **Pacify associates with soothing babies as in we pacify the baby,,give baby its pacifier, it's not really appropriate for adults... Take care.